Adaptation to Inflammatory Bowel Disease

by

Lawrence Matini

Thesis submitted for the award of Doctor of Philosophy January 2017

School of Psychology

Faculty of Health and Medical Sciences

University of Surrey

Declaration of originality

This thesis and the work to which it refers are the results of my own efforts. Any ideas, data,

images or text resulting from the work of others (whether published or unpublished) are fully

identified as such within the work and attributed to their originator in the text. This thesis has

not been submitted in whole or in part for any other academic degree or professional

qualification. I agree that the University has the right to submit my work to the plagiarism

detection service TurnitinUK for originality checks. Whether or not drafts have been so-

assessed, the University reserves the right to acquire an electronic version of the final

document (as submitted) for assessment as above.

Signed:

Date:

Abstract

Inflammatory bowel disease (IBD) is a term used to describe two chronic diseases of the

gastrointestinal tract: Ulcerative Colitis (UC) and Crohn's Disease (CD). Although the

efficacy of treatment is continuously improving, Quality of Life (QoL) in this illness

population remains low with many patients suffering from psychological and psychiatric

comorbidities. Psychological interventions aimed at improving outcomes in these patients

have largely demonstrated little improvement. This thesis argues that this may be the result of

poor understanding of the experience of living with this condition with too little focus on the

adaptation of the patient to their illness. This thesis aimed to address this gap in the literature

through four empirical studies. Firstly, Study 1 used a qualitative design to (n = 22) to

explore the lived experiences of patients with IBD and to conceptualise adaptation to IBD.

The results highlighted the importance of making sense of the illness and the impact and

feelings associated with the illness. This was transcended by a notion of uncertainty which

was resolved by employing coping mechanisms to restore equilibrium between their identity

before and after diagnosis, resulting in a 'new normal'. Study 2 then employed a cross-

sectional design (n = 307) to develop a new measure of adaptation to IBD (the A-IBD) which

after psychometric analysis revealed four subscales including person identity, patient identity,

acceptance and expectations. This study also explored the degree of association of the A-IBD

with existing measures of sense making (BIPQ) and QoL (IBDQ), to assess the ability of the

A-IBD in predicting QoL and ascertain whether it could predict QoL over and above sense

making. The results suggested the A-IBD was not synonymous with these constructs and had

utility as a predictor of QoL even when accounting for the predictive ability of the BIPQ.

Finally, Study 3 used a combination of qualitative and quantitative design (n = 16). Patients

scoring in the top and bottom 25% of the A-IBD from Study 2 completed the measure again

to assess the dynamic nature of adaptation and were interviewed about the factors that either

encouraged or inhibited their degree of adaptation. This analysis revealed that adaptation is

indeed dynamic, and that antecedents of adaptation include 'engagement', 'resilience' and

certain 'contingencies' including disease and social factors. Overall, the findings from this

thesis indicate that the treatment of IBD must be approached in a biopsychosocial manner,

that adaptation can be measured effectively with the new tool and that adaptation, with an

emphasis on the notion of person, not patient, predicts quality of life.

Acknowledgements

Firstly, I would like to extend my utmost gratitude to my supervisor, Professor Jane Ogden,

who has supported and encouraged me every step of the way over the past three years. Your

understanding throughout the toughest point in my life health-wise gave me the time and

space I needed to re-focus and see this PhD through to the end. I couldn't have wished for a

better person to be my supervisor, so thank you.

I would also like to thank Dr. Deborah Cooke for her support and guidance as well as the

numerous other staff and students of the University of Surrey School of Psychology that have

assisted me along this journey. I must also thank the School of Psychology for selecting me

to be a recipient of the Russell Wicks memorial fund which was of great help in seeing me

through the final year of this PhD.

I of course also owe a huge thanks to all the individuals who took part in my research. The

willingness of those who gave up their time and shared their personal stories with me was

staggering and I am forever grateful. I hope this PhD contributes to an increased awareness

and better management of IBD and thus goes some way towards paying back all that were

involved.

Finally, I would like to thank my family and closest friends. My Mum, Dad and Brother have

been unwavering in their support ever since I expressed my desire to one day complete a PhD

a number of years ago. Through the toughest of times they continued to stand by me and help

me realise this dream. I'm particularly glad my Dad can now tell everyone about how his son

is a doctor without me having to stop him.

Table of Contents

Chapter One

Literature Review 1

1.1 Definition of IBD 11.2 Prevalence of IBD 51.3 Causes of IBD 101.4 Consequences of IBD 15

1.4.1 Physiological consequences 151.4.2 Psychological consequences 21

1.5 IBD as a chronic condition 251.6 The process of having a chronic condition 26

1.6.1 Coping 261.6.2 Criticisms of the coping literature 301.6.3 Sense making 321.6.4 Criticism of the SRM and CAT 42

1.7 Outcomes of a chronic condition 431.8 The working model of adjustment to chronic illness – integrating both processes and outcomes

46

1.9 The central role of adaptation 491.10 Process, outcomes and adaptation in IBD 501.11 Overview of aims for thesis 54

Chapter Two

Study 1: Patients’ experiences of living with IBD: a qualitative study

57

2.1 Overview 572.2 Introduction 572.3 Method 60

2.3.1 Design 602.3.2. Sample 602.3.3. Procedure 632.3.4 Interview schedule 632.3.5 Data analysis

2.4 Results 642.5 Discussion 76

2.5.1 Summary of findings 76

2.5.2 Links to literature 772.5.3 In summary 782.5.4 Methodological limitations 782.5.5 Conclusion 80

Chapter Three

Study 2: The development of a new measure to assess adaptation in patients with IBD and its utility in predicting QoL: a cross-sectional study

81

3.1 Overview 813.2 Introduction

3.2.1 Literature review3.2.2. Steps involved in development and validation of the adaptation to IBD questionnaire

828285

3.3 Method 873.3.1 Design 873.3.2 Sample 873.3.3 Procedure 873.3.4 Measure 88

3.4 Results 893.4.1 Conceptualisation 893.4.2 Operationalisation 903.4.3 Assessment of the scale’s psychometric properties

91

3.4.4 Reliability assessment 973.4.5 Final scale with response options and instructions

97

3.4.6 Association of the A-IBD with existing measures of sense making and QoL

99

3.4.7 Using the A-IBD subscales to predict QoL

102

3.4.8 Adaptation formula 1113.4.9 Does the A-IBD predict QoL over and above the BIPQ?

111

3.5 Discussion 1133.5.1 Summary of findings 1133.5.2 Links to literature 1153.5.3 In summary 1173.5.4 Methodological limitations 1193.5.5 Conclusion 122

Chapter Four

Study 3: Patients’ explanation for their degree of adaptation: a qualitative study with a quantitative component

123

4.1 Overview 1234.2 Introduction 1244.3 Method 126

4.3.1 Design 1264.3.2 Sample 1264.3.3 Classifying degree of adaptation 1274.3.4 Change in adaptation 1274.3.5 Procedure 1294.3.6 Interview schedule 1294.3.7 Data analysis 130

4.4 Results 1304.5 Discussion

4.5.1 Summary of findings- thematic analysis

148148

4.5.2 Links to literature - thematic analysis

148

4.5.3 Summary of findings – adaptation - state or trait?

150

4.5.4 Links to literature - adaptation – state or trait?

150

4.5.5 In summary 1514.5.6 Methodological limitations 1524.5.7 Conclusion 153

Chapter Five

General Discussion 154

5.1 Overview 1545.2 Summary of findings 1555.3 Story of the thesis – What is adaptation? 1575.4 Methodological limitations 1605.5 Implications for literature 1635.6 Implications for research 1655.7 Implications for practice 1685.8 Conclusion 169

References 171

Appendices 195

Appendix A - Study One Information Sheet

195

Appendix B - Study One Consent Form 199Appendix C - Study One Interview Schedule

200

Appendix D - Study One Debrief Sheet 201Appendix E - Study One University Ethics Committee Approval

203

Appendix F - Information Sheet (Studies Two, Three and Four)

204

Appendix G - Consent Form (Studies Two, Three and Four)

208

Appendix H - Debrief Sheet (Studies Two, Three and Four)

209

Appendix I - Adaptation to IBD Questionnaire (Study Two)

211

Appendix J - Brief Illness Perceptions Questionnaire (Study Three)

213

Appendix K - Inflammatory Bowel Disease Questionnaire (Study Three)

214

Appendix L - Inflammatory Bowel Disease Questionnaire Stoma (Study Three)

221

Appendix M - Study Four Interview Schedule

232

Appendix N - University Ethics Committee Approval (Studies Two, Three and Four)

234

Index of tables

Table 1. Participant demographic information 62

Table 2. Scale development and validation steps included and not included 86

Table 3. Factor loadings for 18 item adaptation questionnaire 95

Table 4. Means and standard deviations for 18 item adaptation questionnaire 96

Table 5. Correlations between A-IBD, Brief IPQ and IBDQ/IBDQ-S 100

Table 6. A-IBD and BIPQ predicting IBDQ scores 112

Table 7. A-IBD and BIPQ predicting IBDQ-S scores 113

Table 8. Participant demographic information 128 Table 9. Themes and subthemes of thematic analysis 131

1

Chapter One

Literature Review

1.1 Definition of IBD

Inflammatory Bowel Disease (IBD) is an umbrella term that encapsulates two very

similar yet distinct idiopathic, chronic diseases of the gastrointestinal system: Ulcerative

Colitis and Crohn's Disease. The validity of this grouping term is justified by the fact that

both diseases are characterised by inflammation and ulceration of the gastrointestinal tract,

frequent recurrences, and many gastrointestinal and systemic complications (Kirsner, 1995).

The two diseases do however possess individual nuances. Ulcerative Colitis is a diffuse

disorder of the colon which always affects the rectum and extends proximally to include

variable degrees of the rest of the bowel. If only the rectum is diseased then this is often

referred to as 'proctitis', which may be followed by 'distal colitis' involving the left or 'distal'

side of the large intestine and finally 'total colitis' if the disease has spread throughout the

large intestine. The disease never extends beyond the caecum (the intersection between the

large and small intestine) and thus does not involve the small intestine. With Ulcerative

Colitis only the innermost lining of the bowel wall becomes inflamed. In contrast, Crohn's

disease can affect any part of the gastrointestinal tract. Although most commonly found in the

ileocaecal region involving the terminal ileum (the most distal part of the small intestine) and

the caecum, it is possible but rare for the disease to manifest itself solely in the anus, where it

is referred to as 'perianal Crohn's', the mouth,known as 'oral Crohn's', or in the upper gut

region - the oesophagus, stomach or duodenum, in which case it is referred to as

'gastroduodenal Crohn's'. Crohn's disease may involve several segments of intestinal

inflammation simultaneously (known as 'skip legions') with regions of histologically healthy

bowel in between (Jewell et al., 1992) and unlike Ulcerative Colitis, inflammation in Crohn's

2

disease is transmural, i.e. all layers of the bowel wall may be inflamed. Patients with Crohn's

disease also frequently suffer from strictures of the bowel (also known as 'stenosis', a

narrowing of the intestinal wall) or fistula formation (ulcers that extend completely through

the intestinal wall creating abnormal connections between different body parts) into adjacent

loops of the intestine (enteroenteric or enterocolic fistulas), the bladder (enterovesical or

colovesical fistulas), the vagina (enterovaginal fistulas), the skin (enterocutaneous fistulas),

often occurring following surgery along the incision line on the abdomen, or most commonly

the anal area (perianal fistulas) (Crohn's and Colitis UK, 2013).

While the areas of the gastrointestinal tract that the two diseases may inhabit differ,

their symptoms share more similarities. The symptoms that IBD patients suffer from are

commonly characterised by phases of exacerbation and intermittent remission (Jewell et al.,

1992). During periods of disease relapse, symptoms that are commonly experienced by

patients are phases of acute abdominal pain, spasms, nausea, fever, fatigue, diarrhoea and

rectal bleeding (Cooper et al., 2010; Daniel, 2001). Even in times of remission, which are

usually scarce, fatigue still largely affects patients' daily functioning (Czuber-Dochan et al.,

2013).In conjunction with this, some may suffer from extraintestinal manifestations (EIMs)

of the disease that may include maladies of the skin (most commonly 'erythema nodosum' - a

condition where the layer of fat underneath the skin becomes inflamed causing red rounded,

tender nodules to form, and 'pyoderma gangrenosum' - where pustules form on the skin and

enlarge, coalesce and ulcerate) joints (arthritis and spondylitis) and eyes ('episcleritis' - mild

pain and redness of the thin layer of tissue between the conjunctiva and connective tissue that

forms the sclera of the eye, and 'uveitis' - inflammation of the middle layer of the eye called

the uveal tract) (Vermeire & Rutgeerts, 2005). As well as these dermatologic,

musculoskeletal and ocular EIMs, manifestations of the hepatopan-creatobiliary system such

as 'primary sclerosing cholangitis - inflammation of the bile ducts inside and outside the liver

3

causing scarring (Navaneethan & Shen, 2010)as well as renal and pulmonary manifestations

such as 'nephrolithiasis' - the formation of kidney stones (Levine & Burakoff, 2011). These

EIMs can be classified into two major groups: the first including reactive manifestations

often associated with intestinal inflammatory activity and thus mimicking a pathogenic

mechanism common with intestinal disease (of which arthritis, pyoderma gangrenosum and

uveitis are examples), while the second includes many autoimmune diseases that are not

considered specific to IBD but are associated with a major susceptibility to autoimmune

diseases as IBD is thought to be (including spondylitis and alopecia) (Danese et al.,

2005).Some form of these EIMs are observed in as many as 25-40% of patients with IBD

(Bernstein et al., 2001).

Ulcerative Colitis and Crohn's disease, the latter originally being known as 'regional

ileitis' and eventually 'regional enteritis', most likely began their rise to prominence as among

the more challenging of human illnesses several centuries ago as isolated cases, their

ambiguous nature reflected in the decades it took to identify the diseases as distinct diagnoses

from more common gastrointestinal issues. The beginnings of Ulcerative Colitis may even

date back as far back as to the days of Hippocrates (Hippocrates, 1886) who is said to have

recognised different forms of diarrhoea but obviously lacked the technology by which to

identify the underlying physiological issues and formulate diagnoses. The later epidemics of

dysentery and bloody diarrhoea in Colonial America (Kirsner, 1990) were almost certainly of

an infectious nature, the exact cause lost somewhere in the complex mixture of infectious

colitides such as 'Clostridium difficile', 'Esherichia coli', 'Shigella', 'Salmonella',

'Campylobacter' and 'Colonic Tuberculosis', to name but a few. The plausibility of

"nonspecific inflammatory bowel disease" was retrospectively suggested in an account of a

40 year old Irishman who in 1756 developed a persistent "bloody flux", but it wasn't until

1793 in British pathologist Matthew Baillie's Morbid Anatomy of Some of the Most Important

4

Parts of the Human Body that it was suggested that patients were dying from Ulcerative

Colitis (Kirsner, 2001). The first "impact" description of "simple Ulcerative Colitis" was put

forward by Samuel Wilks, a physician at Guy's Hospital in London, in 1859 (Wilks, 1859)

who observed transmural ulcerative inflammation of the colon and terminal ileum upon

performing an autopsy on a 42 year old woman who had died after several months of

diarrhoea and fever. A century later this diagnosis would in fact be later identified as Crohn's

disease (Fielding, 1985) and it wasn't until 16 years later in 1875 that Wilks described

complete inflammation and a scattering of ulcers in the colon of a young woman who had

died from severe bloody diarrhoea that "simple Ulcerative Colitis" was formally identified.

The proper diagnosis of this disease became increasingly possible soon after with the

introduction of the electric sigmoidoscope that enabled health care professionals to more

readily distinguish it from illnesses such as 'infective dysentery', 'catarrhal Colitis', one of the

milder forms of Ulcerative Colitis, or nervous diarrhoea (Baron, 2000). Indications of Crohn's

disease meanwhile began to surface in the early 17th century when an autopsy of a boy who

had died after persistent abdominal pain and diarrhoea and was described as having an

'ulcerated caecum' that was 'contracted and invaginated in the ileum'. Similar observations

were later made by the likes of Fenwick (1889) who encountered "adherent loops of intestine

with a communication between the caecum and adherent small intestine" along with a dilated

and hypertrophied ileocaecal valve that "was contracted to the size of a swan's quill" in the

autopsy of a 27 year old woman with a history of diarrhoea and weight loss. The descriptions

of Crohn's then began to rise significantly in the early 20th century with case reports

predominantly from Europe and North America documenting the occurrence of tumour-like

granulomas (a collection of immune cells that cause inflammation) of the small intestine that

were initially regarded as malignant and required surgical removal (Kirsner, 1988). The first

clear description of the disease and the recognition that the granulomatous inflammation was

5

not tumour-related came from the work of Dalziel (1913) who described that one of his

patients had experienced bouts of cramping abdominal pain and diarrhoea which progressed

to intestinal obstruction and death with an autopsy that revealed entire chronic inflammation

of the small intestine. This work actually preceded the seminal paper of Burrill Crohn,

Ginsburg and Oppenheimer (1932) in which they described eight cases of regional ileitis

from which the disease eventually derived its name. Confirmation that the disease was not

localised solely to the ileum was later documented by Lockhart-Mummery and Mason

(1960), yet the label of 'Crohn's disease' would remain.

1.2 Prevalence of IBD

Although IBD initially rose as isolated cases in Great Britain and northern Europe, as

well as more industrialised countries such as North America, the diseases have steadily

increased numerically and geographically and today are recognised worldwide to now

include reports from Asia, Africa and Latin America (Hanauer, 2006), suggesting it is now a

global disease. This statement is backed up by Molodecky et al.'s (2012) time-trend analysis

data which demonstrated that 75% of CD studies and 60% of UC studies included in a

systematic review had an increasing incidence of statistical significance (p<0.05). Current

epidemiological studies suggest that, in the West, the incidence and prevalence of IBD has

increased in the past 50 years, up to 8-14 per 100,000 persons and 120-200 per 100,000

persons for UC, respectively, and 6-15 per 100,000 persons and 50-200 per 100,000 persons

for CD, respectively (Cosnes et al., 2011; Meyer, 1984). It is now estimated that, in total,

roughly 1.4 million people suffer from IBD in the United States and 2.2 million in Europe

(Loftus, 2004). Specific examples of the increasing commonness of IBD have been illustrated

by the likes of Munkholm et al. (1992) who found that the incidence of CD had increased six

fold from 1962 to 1987 in Copenhagen, Denmark. These figures were later backed up in a

prevalence study conducted by Vind et al. (2006) who found incidence rates of 8.6 per

6

100,000 for CD and 13.4 per 100,000, confirming the aforementioned current incidence

estimations in the West. Indeed, Scandinavia appears to be a region in which IBD has

become an increasing problem. Figures for CD from Stockholm, Sweden collated by Lapidus

et al. (1997) had seemed to stabilise at 4.6 per 100,000 persons but, upon a recent review of

these figures gathered during the period of time from 1990 until the turn of the millennium by

Lapidus (2006), the statistics reflect those of the previously mentioned Danish studies,

demonstrating that CD rates of incidence had markedly increased to a mean incidence rate of

8.3 per 100,000 persons, with 0.2% of the population being found to suffer from CD. Further

to this, until recently there has been little data available on the epidemiology of IBD in

Eastern Europe, but new studies from Hungary and Croatia are reporting steep increases in

IBD incidence suggesting they are now comparable to Western European countries (Burisch,

2014; Lakatos et al., 2004). In conjunction with this, as mentioned the rest of the World

alarmingly seems to be catching up to Europe too. Figures on the incidence and prevalence of

IBD in Canterbury, New Zealand provided by Gearry et al. (2006) reflect the previously

mentioned general Western statistics with UC incidence rates at 16.5 per 100,000 persons and

CD rates of 7.6 per 100,000 persons, suggesting that IBD is at least as common in Canterbury

as in Western regions where it was once suggested incidence and prevalence was low (Schlup

et al., 1986; Eason et al., 1982). Meanwhile, age-adjusted prevalence figures from Lebanon

report figures of 106.2 per 100,000 persons for UC and 53.1 per 100,000 persons for CD

(Abdul-Baki et al., 2007), echoing similar prevalence rates to the West. Furthermore,

although the epidemiologic profile within some countries is still developing, it is thought that

even in these regions IBD is not as rare as previously thought, such as in Iran (Aghazadeh et

al., 2005) where UC is of particular predominance, outnumbering CD cases at a rate of 9:1,

and Korea where the incidence and prevalence rates of CD specifically have been thought to

be increasing rapidly (Lee & Lee, 2014).Indeed, figures from Asia generally, but particularly

7

East Asia suggest an increasing incidence and prevalence of IBD over the past decade (Thia

et al., 2008) with a twofold to threefold increase in incidence in several Asian countries (Ng,

2015). Even in regions where absolute incidence figures may not match those mentioned

above, they are still noteworthy as indicators of IBD as an increasingly worldwide issue. The

incidence of CD in Puerto Rico was recently investigated for the period 1996-2000, showing

an increase from 0.49 to 1.96 per 100,000 persons, with a similar increase but double

incidence for UC (Appleyard et al., 2004). Similarly, a report from Saudi Arabia from 1983-

2002 showed an increasing median annual incidence for the period of 1993-2002 (1.66 per

100,000 persons) compared to 1983-1993 of more than 500% (Economou et al., 2009).

Worryingly, but perhaps unsurprisingly, the escalating rates of paediatric IBD and in

particular of CD have also been demonstrated in both developed and developing countries in

a systematic review conducted by Benchimol et al. (2011). They found that of 28 studies that

used statistical analyses to assess trends over time, 77.8% reported statistically significantly

increased incidence of paediatric IBD, with 60% of these studies reporting a significantly

increased incidence of CD and 20% reporting significantly increased incidence of UC. In

England alone, recent figures from the Health and Social Care Information Centre stated that

the number of teenagers with CD has jumped more than 300% in the last 10 years, from some

4937 16 to 29 year olds who were admitted for treatment between 2003 and 2004, rising to

19,405 in 2013 (Knapton, 2014). This suggests IBD is likely to become an increasing health

threat to future generations, compounded by the indication that CD may be becoming more

common than UC and with that coming the issues that arise with treating the more

complicated, aggressive nature of CD.

Besides the outlined international differences in both the incidence and prevalence of

IBD, intranational differences also exist, further complicating healthcare professionals'

understanding of and ultimately pursuit for a cure of the disease. For the most part, these

8

differences within countries tend to be associated with ethnicity. Sewell et al.'s (2010) study

of a diverse group of IBD patients in an ethnically diverse healthcare system in San

Francisco, USA, found that Asians and Hispanics were diagnosed at older ages (41.0 and

37.1 years, respectively) than whites (30.5 years) and blacks (31.7 years). Furthermore, CD

was more common among blacks (50% of patients) than Asians (25.5% of patients) and a

significantly higher proportion of whites had a family history of IBD (25.7%) than blacks

(8.8%, p=.04) or Asians (5.9%, p=.003). These ethnic differences have been found to not be

an artefact of ethnicity itself however, as studies have by the likes of Damas et al. (2013)

examined the phenotypes of IBD in Hispanics in the USA and demonstrated differences in

disease presentation between US-born and foreign-born Hispanics. Among the significant

differences found were that foreign-born Hispanics were diagnosed at an older age than US-

born Hispanics (45 vs 25 years of age) and manifested more UC (59.9% vs 41.0%).Similarly,

and perhaps most well-established is the recognition that UC is three to five times more

common in Jews than non-Jews living in Western countries (El-Tawil, 2009). Jews are likely

particularly susceptible genetically to UC which will be elaborated on further in the following

section on the supposed causes of IBD, but explaining research that has found that in Israel,

Ashkenazi Jews have a higher incidence of UC than Sephardi Jews, but a lower incidence

than Ashkenazi Jews in the USA or Northern Europe, complicates matters and suggests a

complex genetic and environmental interplay which will again be discussed further.

In terms of a gender bias in IBD, it is thought that women face a 20-30% greater risk

of developing CD than men (Loftus et al., 2002), with recent figures from a North American

study finding IBD was more prevalent in females than males (417 per 100,000 compared to

284 per 100,000) (Betteridge et al., 2013). However, this gender bias has not been supported

worldwide and may be a characteristic of Western IBD as Ye et al. (2010) have found the

opposite to be true with male-to-female ratios of 2.2:1, while Hu et al. (2014) reported a

9

male-to-female ratio of 1.8:1 in CD patients in their recent geographic mapping study of CD

in an eastern province of China.

Peak incidence for UC and CD occurs between the ages of 20 and 34 years (Gearry et

al., 2006). IBD is thus typically perceived as a younger person's illness with an even more

worrying incidence of IBD in childhood and adolescence which occurs in 25% of patients

and is characteristically extensive and progresses quickly, impacting growth and development

(Van Limbergen et al., 2008). Some studies have also found a bimodal distribution of IBD

incidence, with another peak in the number of cases of IBD onset occurring at around 60

years of age (Ananthakrishnan & Binion, 2009).

Finally, there is a relationship between IBD and a number of unfavourable

socioeconomic variables, highlighted by Bernstein et al. (2001). Namely, patients with IBD

are likely to be unemployed, with CD being more impactful in terms of the ability to maintain

employment than UC. Similarly, and unsurprisingly, patients with IBD, and especially those

who have undergone surgery, take more sick leave than their healthy counterparts (Marri &

Buchman, 2005). Despite this, patients with IBD have a low rate of reporting themselves as

disabled (1.3%). Fewer patients with IBD also achieved postsecondary education and among

those married while living with IBD, approximately 10% of men and up to 20% of women

were no longer married 5 years later. There is a slightly paradoxical relationship between

socioeconomic status and IBD occurrence however, with some reporting that diagnoses of

IBD are more frequent in those with a slightly higher socioeconomic status (Blanchard et al.,

2001).

10

1.3 Causes of IBD

Current theories on the cause of IBD are an amalgamation and interplay of

environmental, infectious, genetic and immunologic factors (Fiocchi, 1998). This makes the

identification of a cure an extremely difficult task due to the high probability that even if a

single initiating factor is found for CD or UC, there are likely numerous complex interactions

that may trigger and exacerbate the illness.

In terms of understanding the genetic and immunologic factors that may underpin

IBD, genome-wide association studies - studies that examine common genetic variants

associated with a particular disease have identified approximately 100 loci (specific location

of a gene, or significant DNA sequence, on a chromosome) that are significantly associated

with IBD. These loci that have been implicated as factors in the pathogenesis of IBD include

a diverse array of genes and pathophysiologic mechanisms including microbe recognition,

lymphocyte (white blood cell) activation, cytokine (protein cells that aid cell to cell

communication in immune responses and stimulate the movement of cells towards sites of

inflammation) signalling, and intestinal epithelial defense (cells responsible for mediating

intestinal homeostasis) (Cho & Brant, 2011). While technological advancements have

revolutionised the understanding of complex genetics influencing diseases, the genetics and

immunology of IBD are particularly complicated due to some susceptibility loci being

specific to CD and UC while others are associated with both (Thompson & Lees, 2011). For

example, an interleukin (a group of cytokines important in stimulating immune responses

such as inflammation) known as IL-17 is strongly suggested to contribute to the development

and progression of UC (Li et al. 2014), as well as immune function-related genes such as

IGHG3 and IGLL2 (Lawrance et al., 2001). Meanwhile, for CD, defective processing of

intracellular bacteria and interactions with intestinal flora which regulate inflammatory

response by stimulating the immune system has been suggested as key to its pathogenesis,

11

with the NOD2 and ATG16L1 genes (Cho, 2008), along with elevated Interleukin-12 levels

(Mannon et al., 2004), are implicated as culprits contributing to this breakdown. One reason

why understanding IBD poses such a difficult task however is that certain gene regions such

as STAT3 and NKX2-3 are associated with both CD and UC indicating common but also

unique mechanisms for the genesis of IBD. This is compounded by the fact that many

immune-mediated diseases, as IBD is largely suggested to be and an argument that is

supported by the aforementioned genes being responsible for regulating immune function,

indicate a genetic overlap, such as with type 1 and type 2 diabetes mellitus (Lees et al., 2011).

Similarly, the IBD diagnoses of patients from different backgrounds have been found to not

necessarily be related to commonly implicated genes. For example, Ouyang et al. (2005)

found a remarkable difference in the CD diagnoses of patients from the Asian Pacific region,

stating that there was an absence of any association with Asian CD with the aforementioned

NOD2 gene as has been repeatedly observed in white and Jewish patients. In conjunction

with this, Halfvarson et al.'s (2003) study on monozygotic twins found that the concordance

level of IBD was only 50% for CD and 19% for UC, reiterating further the need to

understand more than genetics of IBD in order to explain how it is borne. Even as cutting

edge research has revealed that CD and UC are also associated with the absence of a gene

known as 'uhrf1', which is said to be responsible for preventing TNF (tumour necrosis factor)

molecules from signalling pro-inflammatory immune signals into the intestinal barrier, it is

still not clear what triggers increased TNF levels in the guts of patients with IBD or how this

event leads to disease onset (Duke University, 2015).

Others argue that the pathogenesis of IBD can be attributed to infectious agents. In a

population based study from two Danish counties comparing those exposed to salmonella and

Campylobacter gastroenteritis with unexposed persons, the hazard ratio of the onset of IBD

for those exposed compared to unexposed was 2.9 (95% CI 2.2-3.9) for the whole 7.5 year

12

observation period and 1.9 (95% CI 1.4-2.6) for the first year (Gradel et al., 2009). Other

infectious exposures have been argued as being beneficial in protecting from IBD. For

example, Luther et al. (2010) in their systematic literature review suggested that there is a

protective effect of Helicobacter pylori infection against the development of IBD,

demonstrating that in the 23 studies that were included in their review, 27.1% of IBD patients

had evidence of H. pylori infection compared to 40.9% of control group patients. More

generally, it is also hypothesised that "cleaner" environments with lower rates of

communicable diseases are associated with higher rates of IBD onset, with the opposite also

being true. As such, protective factors against IBD that have been suggested in accordance

with this hypothesis are lower usage of antibiotics, increased number of pets and livestock,

larger family sizes, and increased exposure to pathogens such as the aforementioned H. pylori

(Ponder & Long, 2013).Indeed, this theory has been attributed to the increasing incidence of

IBD, as well as allergic reactions such as gluten intolerance, that are thought to be linked to

the worldwide adoption of a contemporary westernised lifestyle (Wills-Karp et al., 2001).

Following on from this, other behavioural and lifestyle factors such as smoking, diet

and stress are also thought to have an impact on the risk of IBD genesis. The issue of

smoking and its link to IBD pathogenesis has been extensively researched is now the most

well understood of the three contributors listed. However, in line with the ambiguity of IBD,

smoking has been found to have a clear opposite effect on CD and UC with it proving to be a

risk factor for CD, increasing the frequency of disease relapse and need for surgery while

being a protective factor in UC, with cessation of smoking increasing the risk of developing

UC ((Rubin & Hanauer, 2000). Once again the particular mechanisms by which each form of

IBD occurs, namely CD and UC, is shrouded in uncertainty (Thomas et al., 1998). Dietary

factors meanwhile provide a far less clear picture of their link to IBD onset, but given the

importance of food in everyday life along with the increasing vigilance of artificial

13

components used in the manufacture of food it undoubtedly warrants investigation.

Furthermore, given the fact that IBD is a gastrointestinal disorder, it is reasonably safe to

presume that dietary factors are likely to be at least influential. However, as stated, this logic

is as of yet not definitively proven, mostly because establishing a cause and effect

relationship between dietary factors and IBD is extremely complex and defining the true

composition of a diet is problematic (Danese et al., 2004). Studies that have attempted to

indicate diet and IBD associations include Ananthakrishnan et al.'s (2014) study which

suggested that high intake of trans-unsaturated fats may be linked with an increased risk of

UC, while Andersen et al. (2012) suggested a diet high in protein, particularly animal protein,

may be associated with increased risk of IBD and subsequent relapses. Yet advanced research

into dietary hypotheses, such as the 'FODMAP' hypothesis, may be bringing us closer to the

answer on whether certain types of sugars in particular, implicated in research as far back as

Sonnenberg (1988) are indeed a culprit in IBD, or at least in CD. The FODMAP

(Fermentable Oligo-, Di and Mono-saccharides, and Polyols) hypothesis states that CD

susceptibility may be associated with an excess in the delivery of highly fermentable but

poorly absorbed short-chain carbohydrates and polyols (sugar alcohols, reduced-calorie

carbohydrates that provide the taste and texture of sugar) to the small intestine and lumen of

the colon which rapidly ferment in the bowels and leads to increased intestinal permeability,

which as discussed previously, predisposes one to CD onset. It is argued that this hypothesis

is supported by the increasing intake of FODMAPs in Western societies (Gibson & Shepherd,

2005). Or perhaps the escalating issue of IBD is due to the rising use of emulsifying agents in

our foods. Emulsifiers, a common component of processed foods, are detergent-like

molecules that may cause IBD by damaging the mucosal barrier and thus allowing gut

bacteria to interact with epithelial cells that line the intestinal walls. Chassaing et al. (2015)

recently found that relatively low concentrations of two commonly used emulsifiers induced

14

low grade inflammation and promoted robust colitis in mice predisposed to this disorder.

With increasing globalisation of the Western diet, it is arguable that these emulsifiers may

underlie the ever more global issue of IBD. That being said, obviously correlation does not

necessarily equal causation, and thus such hypotheses remain just that for the time being.

Finally, and perhaps most controversially is the association of oral contraceptives with IBD

pathogenesis, and CD in particular which has garnered much attention in the media as of late.

The reports link back to certain studies such as that of Khalili et al. (2013) who found that

compared with never users of oral contraceptives, the adjusted Hazard Ratio for patients with

CD was 2.82 among current users and 1.39 amongst past users. The direct association

between oral contraceptives and UC was less certain as women who had previously or

currently smoked were found to be at a higher risk of UC, but there was no significant

association among women who never smoked. This starkly contrasts Khalili et al.'s (2012)

previous prospective cohort study findings that women obtaining or who had previously

obtained postmenopausal hormone therapy appeared to show an increased risk of UC

(adjusted Hazard Ratios of 1.71 and 1.65, respectively), while there was no observed

association between current use of hormones and risk of CD pathogenesis.

Most controversially of all explanatory factors for the pathogenesis of IBD is the

focus of stress as a trigger. A belief in the relevance of psychological factors dates as far back

as the 1930s when gastroenterologists and psychiatrists considered IBD a psychosomatic

disease and that emotional life events and experiences were linked to intestinal symptoms

(Keefer et al., 2008). Methodological issues in assessing the causative nature of stress in IBD

has since largely quashed it as a plausible explanation for the manifestation of the disease,

yet, while purely anecdotal, almost 75% of patients suffering from IBD believe that stress or

their own personality is a major contributor to the development of their illness (Sajadinejad et

al., 2012).What is beyond doubt however is the role of stress in worsening already existing

15

IBD and the cycle of stress, symptom exacerbation, and subsequent further stress that many

patients find themselves in as a consequence of attempting to manage life with IBD.

1.4 Consequences of IBD

Living with IBD has both physiological and psychological consequences for the

patient. These will now be discussed.

1.4.1 Physiological consequences

In terms of mortality rates, IBD patient survival is similar to the general population.

This fact appears to be true regardless of the time period during which patients are diagnosed

as a recent prevalence cohort study of IBD patients in Australia diagnosed after 1970

conducted by Selinger et al. (2013) found that there was no difference in survival between

patients diagnosed earlier (1970-1979) or later (1980-1992). Yet while CD or UC themselves

are rarely directly implicated in the mortality of patients with IBD, Selinger et al. also found

that these patients were more susceptible to fatal cholangiocarcinomas (bile duct cancer)

(p<.001) and fatal colorectal cancers particularly in UC (p=.047). Indeed, colorectal cancer

(CRC) is generally found to be markedly more of an issue in patients with ongoing UC and

CD and particularly in those who present with certain risk factors such as greater anatomic

extent of UC, a more severe degree of inflammation, and have the presence of primary

sclerosing cholangitis and family history of colorectal cancer. Meanwhile, CD patients

suffering from disease activity in the small intestine also at an increased risk of small bowel

adenocarcinoma (cancer of the mucus-secreting glands in the epithelial tissue) (Triantafillidis

et al., 2009).Besides being more susceptible to CRC, in a comparison of CRC patients with

and without UC, UC-CRC patients with stage III colorectal cancer had a poorer survival rate

than the sporadic CRC patients (43.3% versus 57.4%, respectively, p=.0320) (Watanabe et

al., 2011). The fact that the risk of CRC increases 8 to 10 years after a diagnosis of UC

16

(Yashiro, 2015) is a strong suggestion that the increased risk of cancer in IBD is a

consequence of the disease rather than an inherited phenomenon, most likely due to factors

such as oxidative stress and apoptosis (cell death) resulting from prolonged inflammation

(Breynaert et al., 2008).

Despite the largely non-life threatening outlook of being diagnosed with IBD, patients

instead face the prospect of multiple acute or ongoing threats to their health as a consequence

of their diagnosis. First and foremost is the issue of pain in IBD and its management which is

a frequent issue amongst the IBD population, in both an acute and chronic sense. Medical

professionals' most obvious task is that of pain amelioration and yet it is often regarded as the

most challenging aspect of their role in providing care for the patient (Giordano & Schatman,

2008). This difficulty is augmented when dealing with an illness such as IBD for which it is

often a complex matter to identify patient's pain as a result of the potential for pain arising

due to a variety of underlying issues: active inflammation, secondary complications, as well

as functional pain that has no structural or biochemical explanation (Docherty et al., 2011).

Even when patients achieve a period of remission from their IBD, although the exact

definition of this status can vary, Simren et al. (2002) found that in a study of 43 patients in

remission from UC and 40 patients in remission from CD, 33% and 57%, respectively, were

experiencing symptoms of Irritable Bowel Syndrome (IBS, a syndrome that is characterised

by pain and symptoms akin to IBD, albeit less severe, but not accompanied by inflammation

or other tissue-related changes). Crucially, those experiencing these IBS symptoms displayed

decreased levels of wellbeing than those without, and so it becomes apparent that

gastroenterologists' and accompanying healthcare practitioners' task of providing improved

quality of life for their patients may not be accomplished even when they may manage to help

control the IBD itself.

17

In conjunction and as previously highlighted, patients with IBD are prone to suffering

inflammatory co-morbidities that are also often associated with pain such as fibromyalgia

which has been documented by Buskila et al. (1999) to be found in around 30% of patients

with IBD. More general extraintestinal manifestations associated with IBD were found to

appear at least once in as many as 46.6% of patients in a prospective study of 295CD and 271

UC Spanish sufferers, with joint manifestations the most common type (Mendoza et al.,

2005). Indeed, IBD-related arthropathy is the most common extraintestinal manifestation

reported in the IBD population and can have a significant impact on morbidity and quality of

life. More specifically, those suffering from arthropathy are considered to be afflicted with an

axial variant which may include inflammatory back pain, sacroiliitis (inflammation of the

joint formed by the union of the sacrum and the ilium), or ankylosing spondylitis, which is

less likely to correlate with gastrointestinal symptoms; a peripheral variant which is generally

non-erosive and may correlate with one's disease activity; or a combination of both types. As

such, treatment of one's IBD symptoms may not always have the same beneficial effects for

controlling one's arthritic symptoms (Arvikar & Fisher, 2011). Treatment of this arthritis can

be achieved alongside IBD disease activity through the use of biologics that temper the

body's inflammatory response, however short term use of non-steroidal anti-inflammatory

drugs (NSAIDs) (De Vos, 2009), yet these can in turn irritate the gut lining and trigger one's

IBD symptoms, further highlighting the difficulty in managing IBD in that it rarely results in

intestinal symptoms in isolation.

Despite facing the prospect of extraintestinal manifestations of their IBD and the

possibility of unwanted side effects of their treatment, patients' most pressing concerns in this

facet of life with IBD arise from the side effects of their main treatment regimens. While

major advancements have been made in developing medications for IBD which have, for the

most part, been largely successful in circumventing suffering that is a direct result of active

18

disease, largely due to the rise of biologic agents which target specific inflammatory agents

that are thought to be key in the over active immune system of patients with IBD

(Triantafillidis et al., 2011), their side effects can be troublesome at best, and life threatening

at worst. Infections and septicaemia are the most common threats associated with this

treatment, and in fact with treatments lower down the 'pyramid' of IBD treatment such as

corticosteroids such as prednisone/prednisolone and more general immunomodulators (as

opposed to target specific modulators in the case of the biologic drugs) such as Azathioprine

or Methotrexate. The issue here is that biologics augment these risks as they are often

combined with immunomodulators for greater efficacy by preventing antibody formation to

the drug (D'Haens, 2007). Of particular concern are the opportunistic infections that patients

being treated with biologics and immunomodulators may encounter, such as listeriosis

(caused by eating food contaminated by listeria bacteria), nocardiosis (most commonly an

infection of the lungs, but also sometimes of the skin, brain, or other organs) and invasive

aspergillosis (a fungal mould that usually affects the respiratory system but can spread to any

region of the body) to name but a few (Blonski & Lichtenstein, 2006).The risks of such

infections were investigated by Toruner et al. (2008) who found that Azathioprine/6-

Mercaptopurine (known as 6-MP, another 'thiopurine' immunomodulator) was associated

with an OR of 3.1 for developing opportunistic infections, Infliximab (a brand name for one

of the more popular biologics) with an OR of 4.4, but the combination of the two producing a

potential OR of 14.5, depicting one clear drawback of a combination therapy of

immunomodulators and biologics. Other possible adverse events include neurological

disorders caused by demyelinisation in patients treated with biologics, including reports of

multifocal motor neuropathy (a rare condition in which multiple motor nerves are attacked by

the body's immune system causing muscles to gradually weaken) (Rutgeerts et al., 2005) and

optic neuritis, the latter of which dissipated entirely after discontinuation of the treatment

19

(Hommes et al., 2005). Other similarly drastic concerns include the potential for the

reactivation of latent tuberculosis and hepatitis B, congestive heart failure (Parekh & Kaur,

2014) as well as liver toxicity (Carvalheiro et al., 2013). Most worrying of all potential

adverse outcomes from immunomodulating therapy however is the risk of cancer

development, particularly with regards to hematologic malignancies such as lymphomas.

Thiopurines alone have been found to be associated with increased risk of non-Hodgkin

lymphoma in particular, the addition of anti-TNFs also significantly increases the risk of a

rare hepatosplenic T-cell lymphoma, particularly in young males with CD (Biancone et al.,

2015). While the absolute rates of these malignancies remain low((Siegel et al. (2006)

observed 201 cases of lymphoma in 100,000 patients at 1 year while receiving Infliximab)),

help reduce steroid dependency (Schintzler et al., 2009) and have a major impact on key

disease parameters such as fewer hospitalisations and surgical procedures (Lichtenstein et al.,

2005), thus suggesting the potential benefits of these treatments outweigh the potential risks,

the impact of these aforementioned potential side effects on both a physical and

psychological front for the patient must not be downplayed. The possibility for serious

consequences are undoubtedly a factor to consider in terms of safeguarding both the physical

and psychological wellbeing of patients. This is particularly true given the non-curable nature

of IBD and the fact that these drug treatments are often prescribed indefinitely even though

the ideal and safest duration of treatment as well as the identification of which patients may

stop therapy is yet to be fully understood (Clarke & Regueiro, 2012), and withdrawal can

substantially increase the risk of relapse (Gomollon & Lopez, 2008). What's more, for those

who do withdraw, relapse, and then wish to commence biologic treatment once again, the risk

of immunization or hypersensitivity reactions should be taken into account (Magro &

Eliakim, 2014). Finally, the need for precise management of these drugs through the

implementation of administration schedules over episodic/on demand treatment has been

20

proven by Baert et al. (2003) who found that the latter approach led to antibody formation in

>70% of patients treated with Infliximab, which means these patients may often have to

resort to other drugs in emergencies such as the above mentioned corticosteroids which bring

with them a whole host of other side effects including acne, severe mood changes, visual

changes due to steroid-induced hyperglycaemia, early cataract formation and potentially even

aspectic joint necrosis (death of bone matter) (Botoman & Bonner, 1998). While such

valuable discoveries have been made and continue to be made over the safety of these

medications, patients still face great uncertainty as to whether their bodies will tolerate these

strong drugs and, if so, for how long.

Yet even when drug treatment is successful, fatigue then becomes the most

troublesome symptom for many patients in remission, occuring in more than 40% of cases

(Minderhoud et al., 2003). The mechanisms by which this fatigue occurs are not well

understood (Czuber-Dochan et al., 2013) and this is likely due to its prevalence during

periods of not only quiescent disease activity, but no remaining residual anaemia or iron

deficiency being evident (Bager et al., 2012). Such fatigue has been found to have a

significant association with depression (Grimstad et al., 2015), disability (Cohen et al., 2014)

and health-related quality of life (Romberg-Camps et al., 2010). This issue is compounded

further by an obvious gap in healthcare professionals' knowledge and understanding of the

complexity of IBD fatigue and the gravity of its impact on patients' lives (Czuber-Dochan et

al., 2014).

Furthermore, however successful modern medicines have proved to be in reducing the

need for surgical intervention, this is another reality that patients often have to confront as it

is still highly likely that patients will have to undergo numerous and sometimes drastic,

emergency surgeries (particularly in the case of UC patients who opt to undergo a colectomy

or proctocolectomy in order to essentially 'rid' themselves of the disease as UC is localised to

21

the large intestine and rectum). In general, approximately 70% of people with CD will need

some form of surgical intervention within 10 years of diagnosis (Peyrin-Biroulet et al., 2010)

and around 20% of patients with UC will require a colectomy following an acute attack

(Artari et al., 2008). Even in this era of biologics, approximately one in five patients treated

with these powerful drugs require intestinal resection (removal of a portion of the bowels

with subsequent reattachment of the remaining bowel) after 2-5 years of this treatment

(Peyrin-Biroulet & Lemann, 2011). The financial burden of IBD that such surgeries and drug

treatments place on both governments and patients themselves who suffer from greater rates

of unemployment (around 10%) and take more sick leave (3-6 weeks per year) and

experience around twice as much permanent work disability as a result of their illness, must

also be taken into account when assessing the challenges IBD poses. In Europe alone it is

estimated that there is a total yearly direct healthcare cost of 4.6-5.6 billion Euros (Burisch et

al., 2013). Recent figures suggest that for CD alone, when European and USA data is

combined, annual total costs reach almost 30 billion Euros with more than half of that sum

due to indirect costs (Floyd et al., 2015).

1.4.2 Psychological consequences

These physiological and financial obstacles in turn contribute to and are intertwined

with the psychological challenges of living with the chronicity of IBD, which may have

negative social and behavioural implications. For instance, with particular respect to the fact

that surgery is commonplace in IBD, patients often have to live with significant abdominal

scarring and possibly stomas and ostomy bags that may even be required or opted for on a

permanent basis. Saha et al. (2015) conducted a study of adults aged 18 and above who had

been diagnosed within the past six months and followed them up over a two-year period to

determine whether body image dissatisfaction (BID) changed over time in patients with IBD,

finding that in 274 patients studies BID was found to be stable over time for both men and

22

women and across IBD subtypes despite overall improvements in disease activity. BID is

particularly linked to steroidal treatment,due to the possibility of aforementioned facial

swelling and acne, and has a number of repercussions for the patient including low levels of

general and IBD-specific quality of life, self-esteem and sexual satisfaction. Consequently,

BID concerns in patients with BID are multipronged in that they are not only physical but

psychosocial too, affecting crucial aspects of life including work and social activities

(McDermott et al., 2015), but also more unspoken facets of life such as patients' intimate

relationships. This is particularly true as BID has been found to be more prevalent amongst

women with Muller et al. (2010) reporting that 74.8% of versus 51.4% of males complained

of an impaired body image. The knock on effect of this being that a greater proportion of

operated women also reported decreased frequency of sexual activity versus males as well as

decreased libido. BID stemming from stomas play arguably the largest part in deterring these

patients from engaging in sexual activity since disguising the stoma bag and worrying about

it leaking interfere with one's ability to focus and ultimately make it a pleasurable experience

for both themselves and their partner. Adjusting to sex can be troublesome at the best of

times in the case of a patient with a long established partner, but can prove even more

problematic should the patient be single and seeking a partner who they will then need to

disclose the matter to, resulting in self-consciousness, and social unease (Manderson, 2005).

This issue may then be compounded by the burden of incontinence that some patients must

deal with, as well as more immediate boundaries to social interaction such as crippling

abdominal pain, which may consequently lead to complete social isolation as opposed to

mere unease (Karwowski et al., 2009).

Unsurprisingly, this concoction of negative factors associated with life with IBD

consequently contributes to raised levels of psychological comorbidities in this population.

Walker et al. (2008) demonstrate this issue in their population-based study of the prevalence

23

of lifetime mood disorders in 351 patients with IBD and 779 region-matched controls. Their

comparison suggested higher rates of panic, generalized anxiety, and obsessive-compulsive

disorders and major depression in the IBD sample than in national samples from the United

States and New Zealand. Most persistent of these issues are anxiety and depression. Recent

findings by the likes of Tribbick et al. (2015) have found that almost 20% of patients have at

least one anxiety condition, while just over 10% have a depressive disorder present, while

figures reported by Bannaga and Selinger (2015) suggest abnormal anxiety levels are found

in up to 40% of patients with IBD, and even up to 80% for anxiety and 60% for depression

during a relapse phase (Addolorato et al., 1997). Even in remission rates of anxiety and

depression have been found to be as high as 29-35% (Mittermaier et al., 2004). These

psychological disturbances in turn are associated with negative quality of life and health

outcomes such as predicting even lower sexual function (Timmer et al., 2007), increased

disease activity (Graff et al., 2009), an increased risk of surgery in CD by up to almost 30%

(Ananthakrishnan et al., 2013) as well as enhancing patients' perceived barriers to medication

adherence (Gray et al., 2012), further perpetuating this deleterious cycle.

The amalgamation of these biopsychosocial concerns result in decidedly low health-

related quality of life (HRQoL) scores amongst the IBD population. Floyd et al.'s (2015)

systematic review of 61 publications concluded that CD patients in the US and Europe

experienced consistently and statistically significantly lower HRQoL compared with normal

populations due to physical, emotional and social effects. Similarly, Bernklev et al. (2005)

found that in a population-based cohort of 348 Norwegian patients with IBD as compared to

2323 Norwegian healthy controls, six of eight and seven of eight dimensions of the SF-36

were significantly lower in patients with UC and CD, respectively. Meanwhile, Janke et al.'s

(2004) study on 415 IBD outpatients reminds us that this disease significantly impacts not

only health-related quality of life, but general life satisfaction too in both CD and UC. These

24

results are, as is often the case, linked to disease severity, yet there is sufficient evidence to

suggest that quality of life is also impacted during periods of remission. For example, Lix et

al. (2008) found that changes in IBD QoL were influenced by one's longitudinal profile of

disease activity, namely those who experienced fluctuating disease activity showed

improvement over time versus those with consistent activity, but this profile had only modest

effects on their psychological functioning with regards to aspects such as perceived stress,

health anxiety and pain anxiety. Indeed, the importance of not assuming patient satisfaction

purely based on disease activity was suggested as far back as Drossman et al. (1989) who

found that patients' functional status and disease concerns correlated better with scores of

wellbeing and healthcare utilisation than physicians' rating of their disease activity. Similarly,

family members have been found to underestimate patients' self-reported HRQoL (Guyatt et

al., 1989). What these results together suggest therefore is twofold in that, firstly, IBD has an

impact even when patients are not necessarily experiencing active disease symptoms, and that

quality of life as it is perceived by the patient themselves as well as absolute health should be

of importance in the care of patients with IBD by families and medical health professionals.

Clinical remission therefore is not always the answer in IBD, particularly when one

also takes into account the persistent problem of fatigue highlighted earlier and the possibility

for anxiety and depression to carry over from periods of disease activity to periods of

inactivity and the subsequent effects these things have on functional and psychological status.

IBD is thus clearly a disease that is all-encompassing for patients, challenging them on a

multitude of levels and is a hindrance to quality of life at all degrees of disease severity and

thus adaptation to it behaviourally, socially, psychologically and emotionally is logically the

key to thriving with the illness, especially when one takes into account its chronic nature.

Sajadinejad et al.’s (2012) review article on the psychological issues on IBD refers to the

need for appropriate coping strategies and good adaptation in order to deal with the

25

symptoms of IBD and its psychological impact. However, whilst Sajadinejad et al. (2012)

advocate the need for patients with IBD to be adapted to their illness, little is known

concerning what good adaptation means to patients with IBD or how it can be measured.

1.5 IBD as a chronic condition

IBD can pose multiple problems for patients including the symptoms of the disease

itself, the likelihood of other extraintestinal autoimmune disorders, the high probability of

surgery being required and its consequences all impacting the experience of living with IBD.

Further, these physiological aspects of the disease are then often associated with psychosocial

impacts which combine to significantly influence the quality of life of those individuals

suffering from IBD. Consequently IBD, much like a multitude of other chronic illnesses, is

very often an all-encompassing disease that challenges many patients not only on a daily

basis but also on a number of levels. As a result, this means that in lieu of a cure much of the

chronic illness literature is centred around the key psychological constructs of processes,

namely coping and sense making, and outcomes, which for the purpose of this thesis will

revolve around quality of life (QoL). In other words, since medical intervention has yet to

find a cure for most chronic conditions, the psychology of chronic conditions has mostly

addressed how patients make sense of their illness and what coping strategies best predict

patients' level of QoL. It should be noted, however, that although coping and sense making

will be discussed in this introduction as distinct constructs it is recognised that they are not

mutually exclusive and that notions of coping are often embedded within models of sense

making and vice versa. Furthermore, whilst this thesis will discuss QoL as an outcome of

coping and sense making it is also recognised that the relationship between coping, sense

making and QoL is iterative and dynamic. These different key aspects of process (coping and

sense making) and outcome (QoL) will now be discussed.

26

1.6 The process of having a chronic condition

The process of having a chronic condition has mostly been studied in terms of coping

and sense making.

1.6.1 Coping

Coping is generally viewed as a collection of purposeful, volitional efforts that are

directed at the regulation of aspects of the self and the environment under stress (Compas et

al., 2012). For example, Skinner and Wellborn (1994) defined coping as 'action regulation

under stress', while Eisenberg et al. (1997) interpreted coping as involving 'regulatory

processes in a subset of contexts - those involving stress'. More broadly though, and most

reflective of the implicit link between coping and its regulation of one's psychological and

physiological processes is Compas et al.'s (2001) definition whereby coping is conceptualised

as 'conscious, volitional efforts to regulate emotion, cognition, behavior, physiology, and the

environment in response to stressful events or circumstances'. The main challenge in

conceptualising coping comes though when we attempt to specify the structure of coping

responses since coping is not a specific behavior and rather a broad, umbrella construct that

envelopes a wide range of behaviours and cognitions that one uses to try and overcome a

stressful event. For example, lower order categories of coping may consist of strategies such

as problem solving, rumination and venting, while these lower order categories can then be

further categorised into higher order categories or 'families of coping' such as approach or

emotion-focused coping (Skinner et al., 2003). Indeed, Lazarus and Folkman's (1984)

paradigm of coping with stress differentiates between emotion-focused and problem-focused

which has proved particularly useful for the chronic illness literature. Here it is argued that

stress, in this context of the current thesis being produced as a product of chronic illness,

elicits an appraisal of the situation at hand that involves, firstly, a primary appraisal of the

27

situation to assess whether the threat is potentially harmful, threatening, blocking of a goal,

creating a void or presenting a challenge. If the stress is indeed deemed to be threatening on

any of these levels then the individual begins a secondary appraisal process whereby one's

resources for coping are examined. At this point, the individual decides whether to employ

problem-focused coping efforts or emotion-focused coping efforts, with the former directed

at controlling or changing the sources of the stress such as by learning new skills, removing

barriers or generating alternative solutions, and the latter revolving around attempting to

manage the emotional responses to the stressor by utilising, for example, wishful thinking,

seeking emotional support or conducting social comparisons (Snyder, 1999). Neither

approach is argued to be inherently and universally beneficial or detrimental however, rather

it is argued that the individual is required to utilise the most appropriate approach given the

particular stressors associated with a situation (Taylor & Stanton, 2008). Evidence of this

phenomenon is abundant within the chronic illness literature, with the likes of Graue et al.

(2004), for example, finding that poor metabolic control and a lower degree of diabetes-

related quality of life are associated with greater use of emotion-focused coping in those with

type 1 diabetes, while Affleck et al. (1999) found that patients with osteoarthritis experienced

improved pain levels following a day with more emotion-focused coping.

Lazarus and Folkman's dichotomous paradigm of problem and emotion-focused

coping which was later operationalised by their Ways of Coping checklist (Folkman &

Lazarus, 1988), was subsequently elaborated on by Carver et al. (1989) in their COPE

inventory. The COPE inventory consists of 15 scales and was developed with a view to

further conceptualise coping as a broader process than merely revolving around the two

dimensions of problem and emotion-focused styles (Litman, 2006). The 15 scales include

five scales on problem-focused coping such as 'planning' and 'instrumental social support'

which involves seeking advice from others, along with a further five scales on emotion-

28

focused coping such as 'positive reinterpretation', 'turning to religion' and 'denial', but is

supplemented by "less useful" coping scales such as 'behavioural disengagement' and 'mental

disengagement' as well as 'recently developed' coping scales such as 'substance use' and

'humour'.

Moos and Schaefer (1984) meanwhile applied 'crisis theory' to their theory on the

process of coping with chronic illness. Crisis theory, stemming from Erikson's (1963) early

work on psychosocial crises that arise at different stages of human development, was used by

Moos and Schaefer to demonstrate how illness is a crisis and represents a turning point in the

life of an individual diagnosed with a chronic illness. They put forward the notion that

physical illness causes a number of changes than can be considered as a crisis, be they a

change in identity from breadwinner to a person with an illness, a change in role from

independent adult to passive dependant or changes in one's future from one involving

children, a career or travel to one shrouded by uncertainty. This can be compounded by

illness-specific factors such as the unpredictability of the illness, unclear information

regarding the illness, ambiguousness about the causality and potential outcome of the illness,

as well as limited experience in dealing with illness in general (Ogden, 2004), the majority of

which are true for those living with IBD and have indeed been highlighted in the previous

section on the consequences of life with IBD. Once confronted with these crises, Moos and

Schaefer argued that a three step process occurs by which individuals first cognitively

appraise the disequilibrium that is created by the illness crisis, appraising the seriousness and

significance of their illness. Following this, it is theorised that seven adaptive tasks are

carried out which can be separated into, firstly, the illness related tasks of dealing with pain

and other symptoms, dealing with the hospital environment and treatment procedures, and

developing and maintaining relationships with health professionals. Meanwhile, general tasks

involve preserving emotional balance, preserving self-image, competence and mastery,

29

sustaining relationships with family and friends, and preparing for an uncertain future.

Following this, Moos and Schaefer described how a number of coping skills can be utilised to

deal with the crisis of illness, such as problem-focused coping which they argued involves

seeking information and support, taking problem-solving action such as learning how to

administer insulin injections for oneself and identifying alternative rewards such as

constructing goals that can provide short-term satisfaction. This is supplemented by emotion-

focused coping which in this context involves efforts to maintain hope when dealing with a

stressful situation, emotional discharge aimed at venting feelings of anger or despair, as well

as resigned acceptance which requires one to come to terms with the inevitable outcome of an

illness. Finally, appraisal-focused coping is employed in order to enable oneself to carry out a

logical analysis of the event and mentally prepare to deal with the illness, cognitively

redefine the situation into one that is positive and acceptable, as well as utilising cognitive

avoidance and denial to minimise the seriousness of the illness. In summation, Moos and

Schaefer's theory on coping with physical illness builds on Lazarus and Folkman's

dichotomous theory of coping as involving either merely problem or emotion focused coping,

including not only three varieties of coping style, but also cognitive appraisal and adaptive

tasks to overcome the crisis of chronic illness.

Interwoven within the coping literature, particularly evidenced by Moos and

Schaefer's notions of cognitive appraisal and the general adaptive task of preserving self-

image, competence and mastery is the process of sense making in the face of an illness event.

While the processes of coping and sense making are arguably overlapping, for the purpose of

this thesis they will be addressed separately.

30

1.6.2 Criticisms of the coping literature

While coping styles have garnered a lot of attention in relation to patient outcomes in

the chronic illness literature, the habit of associating a particular coping method with a

broader coping style has proven to occasionally be misleading in terms of determining what

coping style is most predictive of positive outcomes. For example, emotion-focused coping as

mentioned previously has been interchangeably termed as avoidance-focused coping and this

has repeatedly been found to be linked to negative outcomes like depression in MS (Arnett et

al., 2010), emotional distress in cancer patients (Dunkel-Schetter et al., 1992), poor

psychosocial adjustment and depression in those with persistent low back pain (Bombardier

et al., 1990). However, when one views avoidant coping in a more broad, neutral manner, to

include, for example, appraising a situation in a way that focuses on potential positives and

avoids the negatives, this may engender a greater sense of patient control which may

facilitate adjustment rather than maladjustment (as advocated in the CAT principle of

'positive illusions' which will be explored further below). Support for this can be found in the

literature on benefit finding in chronic illness which has shown that this coping method is

predictive of positive outcomes in the form of less distress and perceived growth (Helgeson et

al., 2006). As such, nomenclature such as problem-focused and emotion-focused coping (as

well as its alternative labels of approach and avoidance-based coping) runs the risk of

masking important differences within categories. For example, typically, mental

disengagement which involves an effort to deliberately distance oneself from thinking about a

problem, and escape-avoidance, which is more of an escapist flight that can include

behaviours such as excessive substance use, are both avoidant forms of coping that are

usually grouped under the 'emotion-focused coping' umbrella term. However, mental

disengagement is often adaptive when one does not possess control of a situation such as the

results of an exam (Folkman & Lazarus, 1985), whereas escape-avoidance is usually

31

maladaptive with regards to outcomes. (Folkman & Moskowitz, 2004). Indeed, reflecting on

Moos and Schaefer's (1984) COPE inventory, neither mental disengagement nor substance

use are referred to as emotion-focused coping strategies, rather being labelled as merely "less

useful" and 'recently developed', exhibiting the issue in this area of literature of categorising

individual coping strategies under broader coping style labels. This issue was aptly

summarised by Skinner et al. (2003) whereby the literature has attempted to categorise lower

order "instances" of coping into mutually exclusive, conceptually clear higher order

"families" of coping which reflect the coping styles discussed (problem-focused, emotion-

focused, approach-based, etc.). In this paper, Skinner et al. conclude that while the coping

literature has produced an exhaustive, broad list of coping instances, it is when these

instances have been grouped into higher order categories such as problem vs emotion-focused

that are not good categories because any given way of coping is likely to serve many

functions. Yet commonly used families of coping such as problem or emotion-focused coping

are not exhaustive with respect to lower order categories of coping, with some important

instances of coping falling outside both of these broad higher order categories. For example,

social support seeking is commonly employed by individuals in a health crisis and yet

appears to be focused neither on the problem nor on emotion but instead on other people, thus

fitting into neither of these broad families of coping. As a result, the current thesis is more

concerned with the instances of coping and how they are associated with adaptation to IBD,

rather than the relationship between coping families or styles and adaptive outcomes that is

popular in the chronic illness literature seemingly out of convenience.

32

1.6.3. Sense making

Research on sense making has drawn from two key models: the Self-Regulatory

Model (SRM) and Cognitive Adaptation Theory.

The Self-Regulatory Model (SRM)

In addition to coping, research has also addressed the process of living with a chronic

condition with a focus on sense making which was first established by Leventhal et al.'s

(1980) Self-Regulatory Model (SRM). The origins of this theory were borne by the likes of

Leventhal et al.'s (1965), Leventhal and Singer (1966), Leventhal et al. (1967) and Leventhal

and Trembly's (1968) efforts to understand the importance of fear and danger perceptions in

affecting attitude towards acute threats and protective health actions against these threats.

Ultimately, their focus on fear proved fruitless as fear appeared to only promote protective

actions in the shorter term. Leventhal and colleagues therefore built on this model of fear

communication and distress control by arguing that behavioural regulatory mechanisms were

not governed merely by a valid and believable health danger along with an effective coping

strategy to counteract the threat, but that the representations of danger that patients formulate

themselves and the subsequent coping strategies that they develop based on what they believe

to be the most appropriate means by which to deal with their own perception of the threat,

also impact health behaviours. For example, early work by Leventhal and Cleary (1979) on

smoking behaviour found that smokers switched to filter and low tar and low nicotine

cigarettes because they seemed to be effective ways of coping with the health danger of

smoking based on their own idea of the threat and what they perceived the best way to deal

with this threat. Consequently, Leventhal et al. (1984) proposed their self-regulating

processing system to explain how patients create their own common sense models about their

illness which play an important role in influencing one's adjustment to illness. The SRM is

33

comprised of three hierarchical, interrelated and recursive stages, namely 'representation' of

the illness experience that might guide 'coping', involving the planning and execution of

health-related responses, culminating in 'appraisal' which involves the monitoring and

evaluation of one's coping efforts. This sense making process may in turn lead to a number of

results including the revision of one's evaluation criteria, the selection of new coping

strategies and a change in representation of the health threat as well as a change in the health

problem itself (Scharloo & Kaptein, 1997). Core to the SRM is the idea that representations

of a health threat are a combination of lay beliefs about the threat together with existing

schemata. It is primarily within the lay beliefs of the patient though that Leventhal and

colleagues argue illness representations are constructed. In particular, these representations

are composed of five key components: 'identity' - the label given to the condition and, in an

attempt to legitimise it, its seemingly associated symptoms; 'cause' - the patient's ideas

regarding the supposed cause of the health threat as they perceive it, based on personal

experience as well as information accrued from a possible host of other sources; 'time line' -

the patient's belief about the duration of the illness, i.e. whether it is an acute or chronic

threat; 'consequences' - the patient's beliefs about the effects and outcome of the health threat

and the impact it will have on them physically and socially; 'curability/controllability' - the

patient's beliefs about whether the condition can be cured or kept under control and the

degree to which the patient can influence this (Hale et al., 2007).

The SRM has been applied to a vast number of chronic illnesses and thus the evidence

base from which to draw conclusions as to the efficacy of the relationship between illness

perceptions and illness outcomes is abundant. Early support for the SRM was reported by the

likes of Meyer et al. (1985) who assessed the SRM in the context of patients with

hypertension. In this study, illness representations were assessed in relation to their impact on

adherence to blood pressure medication and the likelihood of patients dropping out of

34

treatment. With regards to adherence to medication, 46 out of 50 patients in a subgroup of

'continuing treatment' identified symptoms of high blood pressure, with 17 of the 46

believing that treatment would influence their blood pressure and modify their symptoms and

12 of these 17 taking their medication as prescribed, with a further nine of these 17

displaying good control of their blood pressure. Five of the 17 who did not adhere to their

medication as prescribed treated their blood pressure as though it were an acute illness and

thus only took medication when they believed their symptoms were present. In contrast,

medication was adhered to by only nine of the remaining 29 patients who believed treatment

did not affect their symptoms, and of these only seven of 29 had good control of their blood

pressure. In this instance, those demonstrating stronger illness representations of identity and

controllability were more adaptive in their illness behaviour in the form of adhering to their

medication and this resulted in generally better health outcomes for these patients.

Meanwhile, for the 'newly treated' subgroup of patients, both symptoms and timeline were

related to decisions to enter and remain in treatment. When the initial interview was used to

divide the 'newly treated' patients into those who did and did not identify symptoms with their

high blood pressure, a greater percentage of those who reported symptoms had dropped out

of treatment by six month follow-up. Upon further examination, unexpectedly, 23 of the 46

who identified a symptom with blood pressure indicated that they had specifically mentioned

that symptom on their first visit to their doctor. When this group of 23 patients was compared

to the 42 who did not say they reported symptoms to their doctors, it was found that 14 of the

23 from the former had dropped out of treatment, compared with 10 of the 42 from the latter.

Therefore, newly treated patients who said they told their doctor about their high blood

pressure symptoms were more likely to drop out, due apparently to their interpretation that

the disappearance of symptoms represented a cure of the disease and the continued presence

of symptoms as a failure in the treatment. With regards to the effects of the perceived

35

timeline of the illness, 'newly treated' patients who saw their problem as chronic (18 of 65)

had a low proportion of drop outs over the next six months (3 of 18). Meanwhile, those who

saw their problem as cyclic or episodic (21 of 65) had a higher dropout rate (6 of 21), while

those who saw the problem as acute (26 of 65) had the highest dropout rate (15 of 26). As

such, this provided evidence for the timeline aspect of illness representations as being a factor

in determining whether patients are compliant with treatment and thus whether they adapt

appropriately to their illness.

More recent applications of the SRM have included the work of Moss-Morris et al.

(1996), among others. In their study on 233 CFS sufferers, it was found that the illness

perception components of illness identity, emotional causes, controllability and consequences

had the strongest overall association with adjustment such that participants with a strong

illness identity and thus attributed certain symptoms to their illness, who believed their illness

was out of their control, caused by stress and had very strong consequences were most

disabled by their illness and psychologically impacted. Furthermore, a series of regression

analyses indicated that these illness perceptions contributed to a greater percentage of the

variance in levels of disability and psychological wellbeing than did the coping strategies

used by the participants to manage their illness, such as venting emotions and methods of

disengagement from the illness. Knibb & Horton (2008) meanwhile assessed the importance

of illness perceptions on 156 allergy sufferers, finding that illness perceptions explained

between six and 26% of the variance on measures of psychological distress in multiple

regression analyses. Specifically, a strong illness identity and emotional representations were

associated with a higher level of psychological distress, while strong personal control beliefs

were associated with lower levels of distress. Coping in this instance explained between 12

and 25% of the variance on measures of psychological distress, and while adaptive coping

strategies such as positive reinterpretation and growth did partially mediate the link between

36

illness perceptions and distress, illness identity, emotional representations and personal

control retained significant independent associations with distress. Others such as Arat et al.

(2011) have applied Leventhal's SRM to systemic sclerosis, finding that in a study of 217

patients, poor physical health was significantly associated with the perception of serious

consequences and a strong illness identity, while good mental health was significantly

associated with low illness identity scores and low emotional response to the illness. Once

again, coping variables were less significantly correlated with physical and mental health

compared with illness perception items. In addition, another finding of interest was that

illness representations contributed more than the characteristics of the patients' disease such

as disease activity and other severity parameters. These findings thus supported the

importance of illness representations in the SRM in predicting positive health outcomes over

and above not only other measures of patient cognitions and coping but also biomedical

markers of disease severity. Meanwhile, Norton et al.'s (2014) study of 277 rheumatoid

arthritis patients found that those patients characterised by a negative representation of their

illness attributed more symptoms to their condition and reported stronger perceptions of

consequences, chronicity and cyclicality of their condition as well as lower perceived control

compared to the positive representation group. Furthermore, the members of the negative

representation group were more likely to have higher levels of pain and functional disability

as well as, longitudinally, increased levels of pain, functional disability and distress.

Cognitive Adaptation Theory (CAT)

Another perspective on sense making in chronic illness was put forward by Shelley

Taylor in her Cognitive Adaptation Theory (CAT; Taylor, 1983). Taylor's 'CAT' describes

the ability for individuals to overcome and readjust in the face of threatening personal events

and was coined on the back of the discovery of this phenomenon in work with cancer

patients, cardiac patients, rape victims and other individuals facing life-threatening events.

37

CAT dictates that this readjustment process is predicated on three core themes. The first is

searching for 'meaning' in the midst of the experience in the form of a search for an answer as

to the significance of the event in question. Meaning can also be determined by associating

attribution and thus identifying the cause of the event. It is these attributions in particular that

are crucial in the search for meaning according to CAT. Heider (1958) previously described

how people are all essentially naive psychologists and we all attempt to make sense of our

environment and the actions that occur within it, even finding supposed causal attributions

when there is no factual basis for these attributions. Heider argued that we make these

decisions on the cause of events in the search for meaning based on either internal

attributions such as personality or belief characteristics of the person at the heart of the event,

or external attributions, i.e. characteristics of our environment or situation in which the

threatening event occurred. In the case of CAT, Taylor et al.'s (1984) seminary work on the

causal attributions of 78 women with breast cancer found that these patients' beliefs about the

cause of their cancer ranged from general stress (41%), carcinogens (32%) and diet (17%), to

those who believed their cancer was borne from a blow to the breast such as a car accident or

fall (10%). Crucially, what was found was that no specific attribution type was associated

with adjustment to a greater degree than any other, thus causal attributions in general are

important rather than the specific type of attribution, with adjustment in this instance being

operationalised by an amalgamation of scores from the Global Adjustment to Illness Scale

(GAIS) (Derogatis, 1975) as measured by the physician; the interviewer's independent rating

on the GAIS; the patient's self-rated adjustment on a 5 point scale; patient self-reports on a

number of psychological symptoms such as anxiety and depression; the patient's score on the

Profile of Mood States (McNair & Lorr, 1964); and the Index of Well-Being (Campbell et al.,

1976). As well as searching for meaning in one's life in the face of a threatening event

through these causal attributions though, according to CAT, people also search for meaning

38

by endeavouring to understand what their life means in light of the threatening event. In this

instance, psychological adjustment was found to be associated with patients who were able to

frame their cancer diagnosis in a positive manner and use the experience as a reason to garner

more satisfaction and meaningfulness from life.

The second core theme is that of 'mastery' which is concerned with regaining control

over life in the face of a threatening event. Mastery can be ascertained by the person

reflecting on what they can do to deal with the event in the present moment and what they

feel they can do to prevent the event from reoccurring in the future. In the sample of cancer

patients referred to thus far, two thirds of those interviewed believed they had at least a

certain degree of control over the course of or recurrence of their diagnosis, while just over a

third of patients believed they had a lot of control over their cancer and the remaining patients

believing that while they perceived themselves as having no personal control over the cancer,

it could be controlled by their doctor and the treatments they prescribed. In terms of the

efficacy of this belief in personal control or the belief in the ability of physicians and

treatments to establish control over the disease, these cognitions were strongly associated

with overall positive adjustment, with the combination of the two beliefs proving to be even

more suggestive of positive adjustment. Alternatively, some patients adopted behavioural

techniques in an effort to both reduce the likelihood of their cancer recurring as well as

establishing control over their cancer at the current time such as changing diet or eliminating

certain medications like birth control pills. Others meanwhile actively sought to be more

knowledgeable about their cancer by acquiring information so as to then also attempt to

establish some control over it, while others still attempted to control the side effects of their

medication using both behavioural techniques, such as sleep or other medications, and

cognitive techniques such as distraction or meditation. These findings were supported by

literature such as that of Thompson (1983) who postulated that the repercussions of averse

39

stimuli, such as the stress that is likely to occur in the face of a threatening event like the

cancer diagnoses being investigated by Taylor et al., can be lessened by establishing control,

be it behaviourally, cognitively, retrospectively, or by amassing information on the event,

largely corroborating Taylor's conclusions on the importance of mastery.

The final aspect of cognitive adaptation according to Taylor's CAT is that of 'self-

enhancement' which Taylor argues is rather focused on social comparisons than specific

cognitions as the former two themes were mostly characterised by. In carrying out these

social comparisons, a person facing a threatening event creates what has been termed

'positive illusions' so that they may begin to feel good about themselves and recover the self-

esteem that is often lost when one is a victim of a threatening event, even when the event can

be attributed to external circumstances. This notion of socially comparing oneself to boost

self-regard was first posited by Festinger (1954) in his theory of social comparison processes

whereby he built upon his seminal paper on how social communications can promote opinion

conformity and subsequent uniformity within groups (Festinger, 1950) to go on to explain

how people are driven to form opinions of themselves by comparing their abilities and

opinions with others around them. Festinger proposed that these social comparisons can be

'upward' or 'downward' depending on if one compares themselves to others perceived as

doing better or by comparing to someone they perceive as worse off, respectively. In the

context of Taylor et al.'s cancer sample, what was found with regards to social comparisons

was that almost all the patients felt that they were doing as well as if not somewhat better

than other women facing the same predicament, in other words almost unanimously the

patients in the sample made downwards comparisons in an attempt to bolster their self-

esteem. Specifically, however, these social comparisons can differ slightly in that while some

are efforts at validating one's favourable image of oneself, sometimes people may

demonstrate cognitive adaptation and self-enhance by socially comparing in order to

40

construct self-impressions also. In these instances, people will compare against those who are

indeed worse off but perhaps also coping well in order to draw inspiration and to act as a

guide for future behaviour, with patients in the cancer group in question for example

comparing themselves with women who had metastatic cancer or who had undergone double

mastectomies.

CAT has been utilised extensively in the adjustment literature to date, being applied in

particular by Helgeson, the first such application taking place in a study which explored the

applicability of CAT in predicting adjustment in a sample of heart disease patients following

coronary angioplasty (Helgeson, 1999). A total of 278 male and female participants were

recruited who had been treated for a coronary event with percutaneous transluminal coronary

angioplasty and partook in an interview while they were in hospital and then six months later.

The primary finding was that indicators of the three CAT core themes generally predicted

positive adjustment among the patients. In conjunction with this, there was found to be strong

robustness of the CAT-related cognitions among patients, suggesting they were consistent in

the face of recurrent coronary events. Helgeson and Fritz (1999) then followed this up by

assessing which of the components of CAT would predict new coronary events after a first

coronary angioplasty, with their results indicating that patients who respond to their illness by

perceiving control over their future, by having positive expectations about their future, and by

holding a positive view of themselves seemed to be less at risk of developing a new cardiac

event after a first coronary angioplasty. Helgeson (2003) then built on this study with an

investigation on 298 male and female participants who were four years removed from

coronary angioplasty surgery using the Cognitive Adaptation Theory Index (CATI),

developed during hospitalisation for the patients' initial angioplasty procedure and which

assesses the degree to which one positively views oneself, has a positive view of one's future,

and the degree of personal control one has over their daily life. Once again CAT, as

41

operationalised by the CATI, predicted positive adjustment to disease, as well as a reduced

likelihood of sustaining a subsequent cardiac event over the 4 year period. More recently,

Helgeson et al. (2014) found similarly encouraging results when assessing whether CATI

scores for youths with type 1 diabetes were predictive of emerging adulthood outcomes. In

this study of 118 youths with (n=118) and without type 1 diabetes (n=122), CATI at baseline

during the participants' senior year of high school predicted reduced psychological distress,

enhanced psychological wellbeing, increased friend support, reduced friend conflict, the

presence of romantic relationships, reduced likelihood of romantic breakups, higher GPA,

higher work satisfaction, and lower work stress during the transition to emerging adulthood,

with stronger findings in these domains for those with rather than those without diabetes,

indicating the importance of cognitive adaptation for those with chronic illness in particular.

Also of significance is the finding that the implications of CAT appeared to extend beyond

merely psychological adjustment to relationship, vocational and diabetes-related outcomes in

this instance. In addition, CAT has been further validated by its application to late-stage

cancer patients by Christianson et al. (2013). In this study of 80 patients with varying cancer

diagnoses, findings suggested that higher scores on questionnaires measuring the three core

CAT constructs, namely greater self-esteem, control and meaning, predicted physical and

psychological quality of life, with physical quality of life particularly influenced by control

beliefs and psychological quality of life particularly influenced by self-esteem. Meanwhile,

Czajkowska et al.'s (2013) study on patients with nonmelanoma skin cancer also corroborates

the validity of CAT, finding that in a sample of 57 patients, the CATI successfully predicted

participants' distress, accounting for 60% of the variance and lending support for the efficacy

of Taylor's CAT constructs in being attributable with adjustment to chronic illness. However,

not all studies have produced results that are entirely unanimous in their support for CAT and

its ability to predict positive adjustment. For example, Moore et al. (2006) found in a study of

42

123 patients with venous thromboembolic disease that, in line with much of the

aforementioned literature, the CAT constructs of mastery and self-esteem were associated

with positive adjustment to disease. In contrast to much of the previous studies however, the

construct of meaning was associated with elevated levels of distress for these patients.

Similar limitations of the theory were demonstrated by Tomich and Helgeson (2006) who

looked into the effect of the components of CAT on QoL and benefit finding in breast cancer

patients. They found in this instance that baseline perceptions of personal control over illness,

but not general self-esteem or optimism, were associated with patients' reports of worse

physical functioning, worse mental functioning, and less benefit finding 5 years later for

recurrent women but not disease-free women, raising questions over the importance of

perceived control on adaptation.

1.6.4 Criticisms of the SRM and CAT

Both the SRM and CAT share a common theme in the form of the prism through

which they conceptualise adjustment to illness. They are predicated on the way in which

cognitions have an impact on illness outcome and it is this aspect of the theories that lends

itself to their main criticism: it is highly likely that other factors influence the proposed

pathways of these models from cognitions to outcome in the case of CAT, and from

cognitions to outcome via coping in the case of the SRM. For example, neither model

accounts for the importance of social interactions and support in the management and

outcome of illnesses. Such social factors have time and time again been reported in the

literature as having an impact on aspects such as medication adherence in diabetes (Miller &

DiMatteo, 2013), influencing adaptive or maladaptive coping which in turn influenced pain

levels in patients with rheumatoid arthritis (Holtzman et al., 2004), as well as being

associated with impairment in multiple sclerosis (Rommer et al. 2016). Further to this,

behavioural factors in CAT are indirectly alluded to in terms of the core theme of mastery

43

and its focus on a patient's belief in their ability to carry out actions to overcome and prevent

further threat, but the theory is centred on the importance of cognitions as reflected by the

theory's name. As for behavioural factors in the SRM and how they influence adjustment,

they are in this instance seen as a mediator of the main focus of the theory, the illness

representations, and subsequent illness outcomes. However, as Hale et al. (2007) point out,

illness representations may be associated with outcomes relatively independent of the coping

strategies used. For example, research into the buffering effects of coping styles against stress

in rheumatoid arthritis found that an avoidant coping style did not appear to be influenced by

perceiving that the diagnosis had serious consequences (Treharne et al., 2007).

In conjunction with this, as outlined in this introduction, while the relationship

between the processes of coping and sense making and the outcome of QOL is likely

iterative, the same can be said of the different components of the SRM. For example, the

belief that an illness has no serious consequences could be deemed a coping strategy such as

denial just as much as it is deemed an illness cognition by Leventhal et al (Ogden, 2004).

1.7 Outcomes of a chronic condition

The key outcome assessed in the context of chronic conditions is Quality of Life

(QoL). As seen with the psychological processes thus far, particularly coping, QoL is

similarly complex in its definition and conceptualisation due to its subjective nature. Liu

(1976) for example argued that it was possible to define QoL in as many ways as there are

people, due to the differing ways in which individuals perceive the notion of quality in their

life. Indeed, the context by which the concept of QoL is applied can again change its

meaning, being used to assess aspects of societal or community wellbeing as well as

individuals or groups (Felce & Perry, 1995). The breadth of the term is typified by the World

Health Organisation's (1997) who define QoL as 'an individual's perception of their position

44

in life in the context of the culture and value systems in which they live and in relation to

their goals, expectations, standards and concerns'. It is a broad ranging concept affected in a

complex way by the person's physical health, psychological state, personal beliefs, social

relationships and their relationship to salient features of their environment'. Flanagan (1982)

became one of the first researchers to endeavour to take this conceptualisation of QoL and

operationalise it, developing the Quality of Life Scale (QOLS). This was a 15 item instrument

that measured five conceptual domains of quality of life: material and physical wellbeing,

relationships with other people, social, community and civic activities, personal development

and fulfilment, and recreation. The QOLS was then adapted slightly for use with chronically

ill patients by adding one item on the degree to which one felt they were able to maintain

their independence. The measure has since then been applied to patients from a variety of

chronic illness populations to assess their perceived quality of life including diabetes

(Burckhardt et al., 1989), osteoarthritis (Blixen & Kippes, 1999), irritable bowel syndrome

(Sperber et al., 1999), systemic lupus erythematosus (Abu-Shakra et al., 1999) and chronic

obstructive pulmonary disease (Anderson, 1995). However, despite the purported efficacy of

the QOLS as a reliable and valid instrument for measuring quality of life from the perspective

of the patient (Burckhardt & Anderson, 2003), measuring QoL in patients is increasingly

becoming specific to illness groups with more focus being placed on health-related quality of

life (HRQoL).

HRQoL is a multidimensional construct consisting of at least three broad domains -

physical, psychological and social functioning, that are affected by one's disease and

treatment (Megari, 2013), rather than simply the QoL of a patient or patient population.

Furthermore, while generic instruments for measuring QoL in chronic illnesses such as the

aforementioned QOLS or the more recent SF-36 (Ware et al., 1993) or EuroQol (The

EuroQol Group, 1990) do allow for broad comparisons across conditions due to only one

45

metric being used and then generalised amongst other disease populations, disease-specific

instruments tend to provide greater precision and sensitivity to clinically important changes

that are unique to the disease in question and thus possibly missed by broader assessment

methods (Staquet et al., 1998). Examples of such disease-specific measures of QoL include

the likes of the Diabetes-39 (Watkins & Connell, 2004), the MG-QOL (Mullins et al., 2008)

which was developed to be used with patients suffering from a rare, autoimmune disorder

related to muscle weakening known as Myasthenia Gravis, as well as the IBDQ (Guyatt et al,

1989) for those with IBD. As such, it is indeed the IBDQ tool that will be utilised later in the

thesis when measuring QoL for the current sample of patients with IBD. This particular

measure assesses QoL in IBD by accounting for four domains of the patient experience:

systemic symptoms, bowel symptoms, social factors and emotional functioning and has

demonstrated excellent reliability and validity (Pallis et al., 2004).

While these types of multidimensional measures of health status have been criticised

for being too broad and therefore defining QoL in vague terms, it was felt that for the purpose

of this thesis a multidimensional outcome measure was not only more pragmatic than a

unidimensional measure of health, but also is representative of the ideally generalised benefit

of being adapted to IBD. Examples of alternative unidimensional measures include the

'hospital anxiety and depression scale' (HAD) (Zigmond & Snaith, 1983) which focuses on

mood or the 'McGill pain questionnaire' (Melzack, 1975) which assesses pain levels which,

while being effective at measuring one particular aspect of health, would likely need to be

used in conjunction with a host of other measures to get a global view of the outcomes

associated with adaptation. In conjunction with this, while measures of health status such as

the IBDQ are subjective in their nature due to being self-report, the decision to employ this

type of measure of outcome is guided by the perspective one takes when assessing health

status. Those concerned with biomedicine may for example view health status as the presence

46

or absence of death in which case mortality rates, an objective measure of health status, are a

more appropriate assessment tool, whereas the current thesis is concerned with health

psychology and thus health status in this context is more complex and requires a greater

variety of outcomes to be accounted for. Not only this, but so as to be in line with a health

psychology model of what health means, individuals themselves should rate their perceived

health status (Ogden, 2004) and as such the IBDQ is again an appropriate outcome measure

of adaptation for the current thesis.

Research into chronic illness is therefore commonly associated with either objective

or subjective measures of health status. Furthermore, while clinicians and other biomedical

health professionals are traditionally focused on the evaluation of symptoms of disease and

functional status of the patients, patients are more often focused on the complete range of

health status (Rumsfeld, 2002) which can be reflected in measures of QoL, and HRQoL in

particular.

1.8 The working model of adjustment to chronic illness – integrating both processes and

outcomes

Research exploring the experiences of those with chronic illnesses have therefore

focused on both the process of having an illness, highlighting the role of coping and sense

making and the outcomes with a focus on quality of life. Some research has also drawn upon

comprehensive models of chronic illness which address both of these issues. This thesis will

focus on one key model by Moss-Morris (2013).

In an attempt to overcome some of the issues thus far mentioned in terms of building

on the conceptualisation of adjustment, Moss-Morris (2013) developed a working model of

adjustment to chronic illness. This model posits, firstly, that multiple background factors

should be taken into account when we assess how people respond and ultimately adapt to

47

various illness stressors. These background factors can come in the form of personal factors

such as early life experiences, values and life goals, as well as demographics, or in terms of

social and environmental factors such as one's socioeconomic background, the availability of

health and social care, as well as the degree of social support one receives. Meanwhile, Moss-

Morris argues that illness-specific factors such as the nature of one's symptoms, the degree to

which these symptoms are disabling or disfiguring, the prognosis associated with the illness

and the treatment regimen required to attempt to control the illness and its associated side

effects then in turn determine, firstly, the nature of possible key critical events, as well as

possible ongoing illness stressors. Examples of the former include ascertaining the potential

threat to one's mortality, the possibility of illness relapse and progression, as well as its ability

to manipulate one's identity and life roles, while examples of the latter include one's ability to

manage social relationships and relations with health professionals, uncertainty regarding

one's future, determining one's limits in light of the illness, the struggle to maintain

autonomy, as well as managing ongoing treatment and potential lifestyle changes. These

illness events and ongoing stressors culminate in the emotional equilibrium of the patient

being upended. Adjustment to chronic illness, therefore, is proposed in this model as the

process of returning and maintaining equilibrium in the face of these chronic stressors, not

dissimilar to the alluded to notion of returning to equilibrium following a health threat in the

SRM (Leventhal et al., 1997). Moss-Morris goes on to claim that this target of equilibrium

can be broken down into psychological, social and physical adjustment, incorporating aspects

such as, among other things, managing levels of distress experienced, limiting the amount of

interference the illness causes on one's life roles and relationships, one's ability to manage the

illness, as well as retaining positive affect. Based on this conceptualisation, disequilibrium, or

maladjustment, persists when there is ongoing disproportionate distress, interference of life

roles and relationships, poor illness management and low positive affect. Conversely,

48

successful adjustment is accordingly determined by low perceived levels of distress, low

interference on life roles and relationships, good illness management and high positive affect.

In order to achieve this successful adjustment and return to equilibrium, or fail to achieve

adjust and experience ongoing disequilibrium as the case may be, Moss-Morris argues that in

conjunction with the previously described background factors of the patient in question, there

are certain cognitive and behavioural strategies that individuals commonly utilise to manage

illness stressors. For example, cognitive factors often cited in the context of successful

adjustment include possessing a sense of control with regards to management of the disease,

self-efficacy regarding generic life situations, an ability to benefit find and positively

reinterpret situations, an acceptance of one's illness, as well as high perceived social support;

while poor adjustment in this domain is often associated with high perceived stress, negative

symptom interpretation, dysfunctional cognitions such as catastrophising, helplessness, as

well as suppressing negative affect. Behavioural factors associated with successful

adjustment meanwhile include coping by using problem-focused strategies and seeking social

support, engagement in positive health behaviours, adherence to medical and self-

management regimes, maintaining activity levels in the face of illness and appropriately

expressing emotions. Alternatively, adjustment difficulties are often associated with

behavioural factors such as coping through avoidance, unhelpful responses to symptoms such

as consistently reducing activity, resting and hyper vigilance of symptoms, as well as venting

or repressing emotions. Crucially though, Moss-Morris asserts that these cognitive and

behavioural factors need to be determined empirically for each illness group, further

distancing the current model from previously discussed models of understanding adjustment

to health threats in that the previous paradigms provide a basic framework for our

understanding of the concept but they are not specific to any particular illness and do not

approach the construct in a multifaceted, patient-centric manner. As such, CAT and

49

Leventhal’s SRM undoubtedly provide frameworks from which we can understand

adaptation to chronic illness, but to fully comprehend adaptation we need to also account for

the nuances of the lived experience of the illnesses so as to reflect the biopsychosocial nature

of chronic illness.

1.9 The central role of adaptation

While thus far we have seen that the literature often refers to the process of

adjustment rather than adaptation, it is the term adaptation that the current thesis will be

focused on going forward. Primarily, the reasoning for this is that the concept of adaptation

cuts across the key psychological processes that we have discussed up to this point.

Throughout the individual notions of Lazarus' coping paradigm, Taylor's CAT, Leventhal et

al.'s SRM and Moss-Morris' working model of adjustment to chronic illness is a seemingly

transcendent theme of adaptation that binds these aforementioned concepts under one

overarching term. Secondly, while the literature seemingly deems adjustment and adaptation

as interchangeable terms, the term adaptation more accurately reflects the life-changing

nature of chronic illness, and IBD in particular, and the subsequent need for patients to

constantly react and evolve in the face of dynamic disease circumstances and evaluate

whether they are adapted in the present moment and, if not, how one can achieve this goal of

adaptation. This will be discussed in more detail in Chapter 3.

Within the chronic illness literature there have indeed been numerous attempts at

bringing together the notions of illness representations, sense making and coping alongside

social and behavioural factors in an attempt to understand adaptation in a multifaceted

manner. These studies have also endeavoured to demonstrate the impact of these

biopsychosocial factors that affect adaptation on a range of outcomes. For example, Dennison

et al. (2009) and Dennison et al. (2010) conducted extensive work on the psychological,

50

social and behavioural correlates of adjustment in patients with MS, finding that the outcome

of distress was correlated with unhelpful beliefs about the self, unhelpful beliefs about

emotions, acceptance, and unhelpful cognitive responses to symptoms and illness

perceptions, while social support and interactions with others and certain health behaviours

such as behavioural responses to symptoms were also associated with adjustment outcomes.

Similarly, McCathie et al. (2002) found that higher levels of catastrophic withdrawal coping

strategies and lower levels of self-efficacy of symptom management were associated with

higher levels of depression, anxiety and reduced QoL, while higher levels of positive social

support were linked to lower levels of depression, and anxiety and higher levels of negative

social support were linked to higher levels of depression and anxiety in patients with chronic

obstructive pulmonary disease. However, these studies do not fully conceptualise adaptation

to their respective illnesses as such, rather they are conceptualised as a product of the

measures of adaptation that the researchers believed were most appropriate or were

particularly interested in associating with outcomes. For example, Dennison et al. (2010)

measured participants on The Psychological Vulnerability Scale, The Beliefs and Emotions

Scale, The Acceptance of Chronic Health Conditions scale, The Brief Illness Perception

Questionnaire and The Cognitive and Behavioural Responses to Symptoms Questionnaire as

'potential predictors of adjustment', while McCathie et al. (2002) selected The Coping with

Illness Questionnaire, The COPD Self-Efficacy Scale and The Illness-Specific Social Support

Scale as their proxy measures of adjustment or adaptation.

1.10 Process, outcomes and adaptation in IBD

While the CAT and SRM have not been as extensively applied to IBD as they have

some other chronic illnesses, Rochelle and Fidler's (2013) application of the SRM is one of

the few opportunities to observe the impact of illness representations on outcomes in this

patient population. In this instance, illness representations were investigated in relation to the

51

outcomes of quality of life (QoL), anxiety and depression. With regards to QoL, those who

believed their illness would last a short time were more likely to have higher QoL scores,

while patients who believed their IBD would have serious consequences displayed lower

QoL scores, as were those patients who did not perceive themselves to have control over their

illness. In terms of anxiety, analyses suggested that patients who perceived their illness to

have serious consequences were more likely to have higher levels of anxiety, as well as those

who perceived themselves to have less control over their illness and, somewhat

paradoxically, those who demonstrated better understanding of their illness. Finally, in terms

of predictors of depression, this was found to be particularly associated with those patients

who believed that their disease would last a long time, as well as those who did not perceive

that medication would control their illness and, again perhaps surprisingly, those who had a

better understanding of their illness. The subsequent conclusion we can draw from these

results by Rochelle and Fidler (2013) therefore is that sense making in the form of illness

representations are indeed also important in IBD as was echoed in all of the aforementioned

chronic illness literature, having an impact on the psychological status of patients with IBD,

which in turn has ramifications for how these patients cope, with those who perceived their

illness to have serious consequences, for example, being more likely to demonstrate

maladaptive coping in terms of expressing their emotions. These behaviours in turn then have

ramifications on QoL and the psychological adjustment of patients, which may then indeed

augment disease-related impacts which in turn can further perpetuate the cycle of negative

outcomes. However, Leventhal et al.'s proposed pathway from illness representations to

outcomes via coping was disputed by Dorrian et al. (2009) who found that although illness

perceptions, and particularly the perception of consequences of IBD, was consistently

associated with the adjustment outcomes of psychological distress, QoL and functional

52

independence, coping did not significantly add to predicting adjustment once illness

perceptions were controlled for.

Indeed, of all the psychological processes discussed, the coping literature and has

garnered the most attention in the IBD literature. As stated previously, much like other

research has concluded, emotion-focused, avoidance-based strategies have been found to be

most predictive of poor outcomes, being linked, for example, to increased psychiatric distress

and poorer QoL (van der Zaag-Loonen et al., 2004; Jones et al., 2006). These results have

been echoed by Voth and Sirois (2009) who found that avoidant coping was associated with

poor adjustment, with adjustment in this case being operationalised as a product of coping

efficacy, acceptance and helplessness indices. However, as outlined earlier, when one

assesses emotion-focused coping in the context of coping instances such as emotional

modulation and acceptance, then emotion-focused coping has been found to be associated

with the outcomes of fewer somatic complaints and symptoms of anxiety and depression

(Thomsen et al., 2002). The relationship between problem-focused coping and outcomes are

similarly unclear. Pellissier et al. (2010) found, for example, that problem-focused coping

was associated with better psychological outcomes such as anxiety, depressive

symptomatolgy and negative mood; whereas the likes of Petrak et al. (2001) found that

problem-focused, or 'active' coping as it was termed in this study, was associated with poor

HRQoL. Others still failed to find any link at all between relationship between QoL and

coping (Larsson et al., 2008; Iglesias-Rey et al., 2014), suggesting there are some

inconsistencies in the impact of particular coping strategies on outcomes in IBD.

Attempts at understanding adaptation in the IBD literature meanwhile are lacking in

terms of both its conceptualisation and operationalisation. While Devlen et al.'s (2014)

conceptual model of the impacts of inflammatory bowel disease has contributed to painting a

somewhat complete picture of the biopsychosocial nature of IBD, which was previously

53

argued as essential if we are to develop an understanding of adaptation to IBD according to

Moss-Morris' (2013) working model, they fail to explain what the process of adapting to

these challenges entails. Devlen et al.'s model depicts the interconnectedness of patients’

bowel and systemic symptoms with not only the psychological impacts of the disease, as well

as the impacts that come about as a result of treatment, relationship difficulties, social and

leisure activity and work, school and parenting limitations. Over time, multiple researchers

have endeavoured to fill the gaps on what aspects help patients overcome and adapt to these

biopsychosocial impacts. Opinions on what exactly constitutes this adaptation have ranged

from Olbrisch and Ziegler's (1982) finding that a patient's general level of self-esteem and

social competence was most closely associated with disease-related adjustment, while

Maunder and Esplen (1999) developed a model of normal adjustment to IBD through a

synthesis of existing literature and clinical experience in a tertiary care medical and surgical

IBD centre, coming to the conclusion that normal adjustment could be understood as a

process involving the interaction of three adaptive challenges: illness uncertainty, loss and

change, and suffering. Voth and Sirois (2009) meanwhile have argued that poor adjustment to

IBD was a product of attributions of self-blame which were directly related to increased

avoidant coping. However, these studies were again based on arbitrary hypotheses of

adaptation rather than developed from the bottom up. A relatively recent qualitative study by

McCormick et al. (2012) meanwhile alluded to the fact that patients with IBD themselves

believed in the importance of adaptations in the form of 'learning survival skills' such as

maintaining balance of one's life in the face of numerous IBD stressors, being careful with

what you eat, bathroom mapping and avoiding social stigma, as well as the importance of a

resilient attitude in order to prevent their condition from interfering with opportunities in their

life. While this study does breach the topic of adaptation to IBD, it requires further

investigation to fully conceptualise.

54

1.11 Overview of aims for thesis

The motivation for the current thesis is to attempt to consolidate the key

psychological principles of the likes of CAT and the SRM with the more holistic approach of

Moss-Morris' working model in the hope of understanding, firstly, what adaptation means

specifically for patients with IBD, taking a bottom up approach to understanding the concept.

The thesis then aims to build on this by investigating how this conceptualisation of adaptation

can be operationalised and measured. This will be followed by an assessment of whether this

framework of adaptation to IBD is potentially beneficial with regards to healthcare protocols

in terms of whether or not it predicts the outcome of patients' subsequent QoL as measured

by the IBDQ. Finally, upon understanding adaptation to IBD and what those who score high

in adaptation do differently to those who score low in adaptation, the current thesis seeks to

better understand how these high scorers were able to achieve becoming adapted to their

illness, and likewise what factors are seemingly preventing the low scorers from becoming

better adapted. In striving to reach these goals it is thus hoped that we may come some way

towards resolving the long-standing issue of reconciling the interests of those primarily

concerned with the psychological underpinning of disease and adaptation to it, with the

interests of the patients who are at the epicentre of the issue and for whom adaptation

presents a challenge on a plethora of fronts, not merely psychologically.

Study 1: Patients' experiences of living with IBD: a qualitative study

Aims: To explore and conceptualise the notion of adaptation in patients with IBD with

regards to emotional, cognitive, social and behavioural aspects. This will provide a

framework for subsequent operationalisation of the concept.

Method: Qualitative study utilising in-depth, semi-structured telephone interviews with

patients with IBD recruited from an opportunity sample of patients using social networking

55

sites and online IBD support groups. An interview schedule will be used to determine, firstly,

the participants' history with IBD, then investigate how the participant felt, thought and

behaved in reaction to their diagnosis and how, if at all, this differs to how they feel, think

and behave with regards to their illness at the time of the interview. By looking at the contrast

of the patients' cognitive, emotional, social and behavioural patterns between the two time

points it is hoped that we may gain an insight as to how the patients adapted to the demands

of their illness over time.

Study 2: The development of a new measure to assess adaptation in patients with IBD

and its utility in predicting QoL: a cross-sectional study

Aims: This study seeks to, firstly, operationalise adaptation in patients with IBD through the

formulation of a measure of adaptation, building on the previous study's conceptualisation of

the construct. This study also aims to assess the degree to which the resulting measure of

adaptation to IBD is associated with the concepts of sense making (as measured by the Brief

Illness Perception Questionnaire; BIPQ) and QoL (as measured by the Inflammatory Bowel

Disease Questionnaire; IBDQ). Finally, the study aims to utilise the adaptation measure to

determine the degree to which patients' adaptation to IBD scores are predictive of their QoL

scores as measured by the IBDQ.

Method: Quantitative, cross-sectional design with recruitment again taking place from an

opportunity sample of patients using social networking sites and online IBD support groups.

The initial adaptation to IBD questionnaire will contain 40 items that will be derived from the

results of Study 1 and subsequently refined through a factor analysis and tested for reliability

using Cronbach's alphas. Participants will also complete the BIPQ and IBDQ, the scores of

which will be correlated with those from the adaptation questionnaire to ascertain the

uniqueness of the latter construct. Finally, participants’ adaptation to IBD scores will be

56

formulated and used to predict QoL scores in a multiple regression analysis. All

questionnaires will be completed online through Qualtrics.

Study 3: Patients' explanations for their degree of adaptation: a qualitative study with a

quantitative component

Aim: To explore the differences between those participants scoring in the top and bottom 25%

of scorers on the adaptation to IBD questionnaire on the key aspects that these patients felt

encouraged or inhibited, respectively, their adaptation to IBD. The aim of this is to then

understand better what aspects can be manipulated to assist patients with IBD to score higher

on the key factors of adaptation as put forward by the adaptation to IBD questionnaire. To

also explore whether adaptation changes over time.

Method: Qualitative study employing in depth, semi-structured telephone interviews with an

opportunity sample of participants scoring in the top and bottom 25% of scorers on the

adaptation to IBD questionnaire. An interview schedule will be used to explore what

psychological, social and behavioural factors the patient felt contributed to their score for

each of the adaptation to IBD questionnaire factors. Further, patients completed the A-IBD

between 10 and 16 months after their first assessment to explore changes over time.

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Chapter Two

Study 1: Patients' experiences of living with IBD: a qualitative study

2.1 Overview

The previous chapter first reviewed the literature regarding the definition, prevalence,

causes and consequences of IBD. It then explored the research regarding the key

psychological constructs of processes and outcomes and how they have been applied to

chronic illness in general as well as IBD, focusing on the notions of coping and sense making

for the former and QoL for the latter.

The aim of this chapter is to explore and conceptualise the notion of adaptation in

patients with IBD using a qualitative study on the emotional, cognitive, social and

behavioural changes that patients with IBD make, if any, over the course of their disease

experience from diagnosis up until the time of interview. This study has been published:

Matini, L., & Ogden, J. (2015). A qualitative study of patients’ experience of living with

inflammatory bowel disease: A preliminary focus on the notion of adaptation. Journal of

Health Psychology. doi: 10.1177/1359105315580463

2.2 Introduction

Inflammatory Bowel Disease (IBD) is an umbrella term that encapsulates two similar

yet ultimately distinct chronic diseases of the gastrointestinal tract: Ulcerative Colitis (UC -

affecting the innermost lining of the large intestine and the rectum) and Crohn’s Disease (CD

- affecting any part of the digestive tract from mouth to anus and may permeate all layers of

the bowel lining). The collective term is legitimised by the similarity in epidemiology and

aetiology of the two conditions (Kirsner & Shorter, 1995). IBD usually develops during

adolescence and is characterised by phases of acute abdominal pain and gut spasms, nausea,

58

fever, fatigue, diarrhoea and rectal bleeding (Gearry et al., 2006). Should patients manage to

achieve periods of remission, fatigue still largely affects patients' daily functioning (Czuber-

Dochan et al., 2013).

The impact of IBD on the lives of patients is widespread. Besides having to deal with

the aforementioned symptoms, patients often experience fear and humiliation as a result of

stool incontinence for example, a profound effect on family life and work (Dudley-Brown,

1996), a feeling of losing control (Hall et al., 2005) as well as possible delayed growth and

sexual development and social isolation (Sparacino, 1984). Compound these psychosocial

effects of living with IBD with the common side effects of regularly prescribed medications,

such as the steroidal treatment prednisolone which often includes weight gain and mood

swings (Bayless, Drossman & Schrel, 1988), the high possibility of needing surgery or an

ostomy bag (Canavan et al., 2006), as well as the increased risk of intestinal cancer in

patients with IBD (Jess et al., 2005) and it becomes evident that it is almost impossible for

quality of life to not be impacted in IBD (Larrson et al., 2008).

Current theories on the cause of IBD are an amalgamation of infectious (Luther et al.,

2010) environmental (Lakatos, 2009), genetic (Cho & Brant, 2011), and immunologic factors

(Verhoef & Sutherland, 1990), which makes identifying a cure extremely difficult due to the

numerous possible complex interactions that may trigger the illness. This issue is

compounded by the growing incidence of IBD as demonstrated by Molodecky et al. (2012).

Hanauer (2006) meanwhile has shown that the prevalence of IBD is also increasing in areas

such as Asia, Africa and Latin America. It is thus imperative that health care practitioners

better understand the lived experience of their patients and can be mindful of this when

delivering treatment plans which may incorporate psychological interventions to maximise

patients’ quality of life. This notion is further supported by the fact that although there have

been major advancements in the treatment of IBD, in particular the rise of biologic agents

59

(Triantafillidis et al., 2011), the side effects of such medications can be harsh (Stallmach et

al., 2010).

The importance of patients’ health related quality of life has been highlighted by

Drossman et al. (1989) who found that patients’ functional status and disease concerns were

found to correlate better with scores of wellbeing and healthcare utilisation than a physician’s

rating of disease activity. In conjunction with this, the presence of anxiety and depression

amongst IBD patients regardless of disease severity (Vidal et al., 2008) further suggests the

importance of developing an increased understanding of the lived experience in IBD.

Psychological research to date has advanced the understanding of IBD and improved

its prognosis. For example, Garrett et al. (1990) found that there was a relationship between

daily stress and self-rated disease severity, while Sewitch et al.'s (2001) study on perceived

stress revealed that, for those patients who experienced high levels of perceived stress, high

satisfaction with social support decreased the level of psychological distress and facilitated

adjustment to the disease.

It is this notion of adjustment or adaptation however, that is often referred to in the

IBD literature yet remains under studied. For example, Sajadinejad et al.’s (2012) review

article on the psychological issues on IBD refers to the need for appropriate coping strategies

and good adaptation in order to deal with the symptoms of IBD and its psychological impact,

yet fails to define what good adaptation entails. This notion was also elaborated upon in

McCormick et al.’s (2012) qualitative study on the experiences of patients with chronic

gastrointestinal conditions where one of the main themes that emerged was that of

‘adaptations: learning survival skills’, but again no clear exploration of this notion was given.

Therefore, the current study aims to address this gap in the literature by exploring the notion

of adaptation in patients with IBD. In particular, the study focuses on their lived experience

60

from diagnosis to the present and observing whether there are adjustments in the ways in

which these patients think, feel and behave with regards to their illness over time and, if so,

what particular aspects of these domains change.

2.3 Method

2.3.1 Design

A qualitative design with in-depth, semi-structured interviews.

2.3.2 Sample

Participants were recruited via opportunity sampling from social networking sites,

predominantly Twitter, as well as online IBD support forums by responding to a recruitment

paragraph outlining the study. Participants were required to be at least 16 years of age,

capable of providing informed consent, living in the UK and had been diagnosed with either

CD or UC at least 18 months ago. Those UC participants who had undergone a colectomy

and thus technically no longer suffered from the symptoms of UC were included as they still

had to live with the effects and challenges of having surgery and it was felt this could still

provide insight into the lived experience of IBD. 22 participants were recruited upon which

point saturation was reached: CD (n=10 - five females, mean age=28.2 years, range=23-31

years; five males, mean age=30.2 years, range=18-39 years; mean time since diagnosis=8.8

years. All were recruited from Twitter), UC (n=12 - nine females, mean age=32.1 years,

range=19-60 years; three males, mean age=42.7 years, range=36-48 years; mean time since

diagnosis=5.0 years. Five recruited from Twitter, six from 'Colitis UK' forums, one from IBD

forums on 'Daily Strength'). One prospective UC participant was not permitted to take part as

they did not yet have a confirmed diagnosis. No participants who stated their interest or took

61

part later withdrew. All participants were given a pseudonym to ensure anonymity.

Participant demographics are presented in Table 1 below.

62

Table 1: Participant demographics

Pseudonym Sex Age (years

)

Diagnosis Time since diagnosis (months)

Jessica F 23 CD 40

John M 30 CD 33

Elizabeth F 31 CD 102

Graham M 39 CD 276

Amy F 30 CD 46

Janet F 29 CD 81

Katie F 28 CD 228

Jason M 25 CD 91

Daniel M 39 CD 120

Brian M 18 CD 41

Jane F 26 UC 59

Jackie F 29 UC 74

Ian M 36 UC 46

Rebecca F 19 UC 34

Diane F 28 UC 34

David M 48 UC 81

Malcolm M 44 UC 44

Gemma F 41 UC 21

Megan F 21 UC 22

Chloe F 33 UC 46

Grace F 60 UC 178

Emily F 32 UC 86

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2.3.3 Procedure

Prospective participants were e-mailed an information sheet (See Appendix A) to

describe the nature of the study along with an informed consent form (See Appendix B) that

they were required to complete on their computer and return via e-mail to the principal

investigator if they were willing to take part. All interviews were conducted in English,

following a semi-structured interview schedule (See Appendix C) over the telephone at a

mutually convenient time and were all carried out, audio taped, transcribed verbatim by the

principal investigator and then stored securely on the University servers according to the Data

Protection Act 1998. Telephone interviews enabled the recruitment of participants from

multiple regions of the UK and also allowed the participants to divulge potentially

embarrassing or intimate information from the safety of their homes and retain a degree of

anonymity. Interviews lasted on average between 30 to 45 minutes and took place over the

course of three weeks in March 2014. Once the interviews had been conducted, participants

were granted the opportunity to ask any questions they had regarding their participation or to

reflect on their experience. All participants were also e-mailed a debriefing form (See

Appendix D) to explain the nature of the study. Ethical approval was obtained from the

University Ethics Committee (See Appendix E).

2.3.4 Interview Schedule

The same interview schedule was used for the CD and UC participants and was

constructed by the authors. The first section of the interview covered the participants' history

with IBD, focusing on the genesis of their illness (How did this diagnosis come about?),

transitioning on to their early reactions to their diagnosis (What were your initial thoughts

and feelings about your diagnosis?), and enquiring as to any initial coping techniques, ending

with how participants are currently dealing with their illness (How do you currently feel

64

about your diagnosis of IBD? What factors have helped you manage your illness?) and a

reflection on what the major changes have been over time, if any, with regards to how they

manage their illness on an emotional, social, and behavioural level. The interview schedule

was piloted with two patients with IBD prior to the study.

2.3.5 Data Analysis

The interviews were analysed using thematic analysis as it provides a “flexible and

useful research tool, which can potentially provide a rich and detailed, yet complex account

of data” (p.78, Braun & Clarke, 2006). Within this analytical framework, an inductive,

'bottom-up', approach was taken as our analysis was not based on any previous research into

living with IBD, rather we sought to generate phenomenological data from which our themes

could be developed. Furthermore, an essentialist theoretical perspective was chosen as our

focus was on the experiences, meanings and reality of the participants. The interview

transcriptions were each read through twice in order to become familiar with the data. Salient

information that related to the lived experience of IBD was then coded and collated and

sorted into a number of prospective themes that seemed to represent the data. Themes and

subthemes were adjusted to include only those that could be supported by illustrative quotes

from the interviews.

2.4 Results

The participants described living with IBD in terms of three core themes, namely

'making sense of the illness', 'impact' and 'feelings'. Transcending these was an overarching

theme of uncertainty which cut across all aspects of their experience. These themes will now

be described with the use of illustrative quotes. They are then finally discussed within the

context of the notion of 'the new normal'.

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Theme 1: Making sense of the illness

Participants described the myriad of ways in which they endeavoured to make sense

of their diagnosis of and life with IBD. In particular they mentioned ways they experienced

internal conflict over the cause or trigger factors of their illness and subsequent periods of

particular ill health, a lack of understanding and knowledge as to what their diagnosis

entailed and the misperceptions of others as to what the participants were experiencing and

the nature of IBD.

Cause and conflict. Participants portrayed their difficulty in dealing with the

ambiguity of their illness genesis or exacerbation in a number of ways, with some suggesting

an inner conflict that perhaps the development of their illness was of their own doing or

preventable. For example, one participant said,

"You just want answers and a lot of people ask well why I've got it and nobody

(medical professionals) can ever tell you why you've got Crohn's disease, if it's your lifestyle,

your diet, it's hereditary, you don't know" (Daniel, 39, CD).

Other participants had their own theories as to what may have caused their illness. For

example, Janet believed her illness precipitated as a result of stress stemming from a prior

abusive relationship:

"At the time I was being beaten up by my boyfriend, like a violent relationship, so I

was like really, really stressed out. But I don't know, like science obviously speaks differently

but I think things like that that's probably...I don't know I never had any issues before and

that's like the only time I got ill and then like that's, well I think that's what triggered it off

anyway" (Janet, 29, CD).

66

Lack of understanding. A sizeable number of the participants also described how they

were oblivious or dismissive as to what their diagnosis meant in terms of its potential severity

and how the disease may impact their future. Phrases such as "I didn't know anything about

it" and "I wasn't educated in it that well" were common. For example, one participant

admitted:

"I suppose in the early stages I thought it was a bit of a oh nothing to bother about, no

worries and all that lot. Nothing really to be concerned about. To now I look at it as a serious,

serious illness, ya know, and it's not something to be taken lightly" (David, 48, UC).

Early treatment success also seemed to lead some participants into a false sense of

security as to their prognosis:

"When I was initially diagnosed I didn't really think much of it which probably

sounds terrible....And because I think the treatment I was put on initially worked so well and I

went into remission I then just didn't really think of it" (Jackie, 29, UC).

Misconceptions. The final hurdle participants faced in terms of making sense and

coming to terms with their illness was dealing with the misconceptions of others as to what

IBD entailed for the participant. The majority of comments were received from family

members. One participant described her disappointment at her initial lack of family support

for their downplaying of the severity of her diagnosis:

"When I first came out of hospital the last time my nan just called it a dicky tummy

and I had IBS, so I felt pretty upset about that because that made me feel really like they

didn't understand what I went through, and they should've because they're my family"

(Andrea, 21, UC).

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Meanwhile, a large number of participants simply stated a lack of public awareness in

relation to IBD and the difficulty in living with an 'invisible illness' that isn't instantly

apparent to others:

"It's only when you tell people that you've got Crohn's disease and the fact that

nobody had a clue, oh what's that then, you know what I mean, that's the sort of response you

get, and nobody actually thinks there's anything wrong with you, and it's one of those

invisible illnesses that you look OK on the outside but on the inside is a totally different

story" (Daniel, 39, CD).

  Participants therefore described a multitude of ways in which making sense of their

diagnosis of IBD had been challenging. Experiences regarding understanding the cause of

their diagnosis and health deterioration, to understanding the capabilities of IBD in terms of

its ability to impinge on future health and prospects and having to deal with the lack of

cognizance and sometimes insensitivity of other's perceptions of IBD were predominantly

negative. The self-questioning demonstrated by those seeking to understand the cause of their

diagnosis and the frustration at dealing with a lack of understanding from others elicited a

consistent sense of bewilderment and segregation that seemed mostly homogenous

throughout the accounts. 

Theme 2: Impact of IBD

All participants regardless of disease severity described how IBD had impacted their

lives on multiple fronts, encompassing a plethora of complex physical, social and

psychological obstacles.

Physical. With regards to the physical challenges of IBD, a number of the participants

spoke generally of the adversity of having surgery and experiencing sometimes numerous

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hospitalisations. The challenge of overcoming the physicality of surgery was apparent in one

participant's account who stressed the "physical toll" it had taken:

"The first surgery, ya know, it's a massive thing and it's a big, physical toll on your

body and, ya know, the recovery period is quite hard. It's like a hard recovery to go through"

(Jackie, 29, UC).

A number of the interviewees also described their struggle with combating the fatigue

that is predominant amongst IBD sufferers. However, of particular note was one participant's

explanation of how even in remission their struggle with fatigue was ongoing,

"I mean I know that I'd rather be tired and in remission than be flaring, it just seems

strange that the fatigue has been more of an issue when I've been in remission" (Diane, 28,

UC).

Social. With respect to the social issues faced by the interviewees, these too were

multi-faceted. One area it affected in particular was the participants' ability to maintain

relationships with their partners, with one participant describing how it was effecting their

intimacy,

"I've got to prioritise what I spend my energy on and at the moment I'm spending my

energy on my job rather than my partner. And most of the time he's fine about that, but

occasionally it can cause an argument" (Diane, 28, UC)

Further to this, participants almost unanimously expressed a difficulty in keeping up

with social events, finding it difficult to commit due to the fear of potentially embarrassing

symptoms in public. One participant mentioned,

"I used to enjoy going out for a beer and all that with the lads and stuff like that, but

that sort of put me off going out because of the, you know the situation you find yourself in

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wanting to find a toilet if you need to go to the toilet, and you know just going into the

unknown" (Daniel, 39, CD).

However, despite the illness putting a strain on these relationships, one participant

voiced the opinion that was shared by a number of the interviewees in that their illness

strengthened the bonds with their closest friends,

"I think if anything those friends have become closer because I think they feel I've

shared a lot more with them now because they know so much about it and they know how

hard it's been, they've been there in the hospital and wherever else and they're still with me

when I feel terrible so they see it face to face" (Amy, 30, CD).

Psychological. With regards to the psychological impact of IBD, the majority of

participants complained of a common dilemma in dealing with a compromised self-identity.

Specifically, the interviewees expressed grievances of being treated differently to others. This

desire to be treated normally was made clear by one participant who said,

"I don't want people to adapt how they are with me just because of my illness, I'd

prefer people just to sort of treat me as they always have" (Elizabeth, 31, CD)

One participant explained how her struggle to avoid being consumed by her illness

was ongoing,

"I still find it hard to talk about how I feel and I struggle to find a fine line between

constantly complaining or constantly talking about it and not talking about it at all and I still

don't think I can get there quite yet" (Amy, 30, CD)

However, some interviewees had seemingly managed to distance themselves from

their illness label, one participant doing so through the help of a counsellor:

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"It made me feel like it's not colitis and Andrea , it's Andrea with colitis, ya know, I

was always putting it like at the front of my mind when I shouldn't have been, I should have

been thinking of myself more" (Andrea, 21, UC)

 Participants therefore described how the impact of living with IBD had been

challenging in three distinct domains. Physically, participants reported the struggles involved

with surgeries and hospitalisations, as well as the persistent battle with fatigue. Socially, their

concerns ranged from issues surrounding intimacy with partners to the wider problem of

socialising with friends. However, some found their diagnosis brought them closer to friends

and significant others as they became familiar with the illness. Finally, some participants

highlighted a psychological battle whereby the struggle to maintain their self-identity and not

see themselves or be seen by others as an ill person was evident. While some were able to

manage this dilemma, for others it was clearly a struggle.

Theme 3: Feelings of IBD

It was apparent that there were three dominant emotions that encapsulated the IBD

experience.

Anxiety. This was mainly displayed in the context of the initial fear and worry that the

majority of participants alluded to in the face of their developing symptoms and upon

diagnosis. This underlying angst was echoed by a large number of the participants by the

relief that they expressed upon realising they were suffering from IBD rather than bowel

cancer. For example, one participant said,

"I remember at the time thinking this is really weird I'm so relieved, and I was crying

and I said to him I'm not crying because I'm upset, I'm crying because I'm just so relieved that

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you haven't told me I've got cancer...the fact that it's a chronic illness didn't really sink in I

guess for a few months" (Gemma, 41, UC).

Being overwhelmed. Specifically, this notion describes the helplessness that many of

the participants displayed. The interviewees explained how the chronicity of their illness was

an aspect of living with IBD that was difficult to handle:

"Sometimes I think it can get you a little bit down because you know you've got this

disease forever and nothing's gonna change, no cures" (Elizabeth, 31, CD).

For others this helplessness was more pronounced, with one participant even

mentioning feeling suicidal during a hospitalisation that had prevented them from attending

interviews for a new job:

"I was getting a bit tearful and I was actually thinking about the most convenient way

to die even though I'd been through worse probably in previous years" (John, 30, CD).

Animosity. Finally, participants described the animosity they felt towards their illness,

characterised by feelings of resentment and frustration. One participant expressed their

resentment towards their Crohn's Disease in its entirety,

"In terms of attitude towards Crohn's I just hated it, I hated everything about it, I

didn't want to talk about it, I resented it and it was just a very negative attitude towards it"

(Daniel, 39, CD).

Meanwhile, one participant expressed their resentment in the form of their jealousy of

others who were not in their predicament,

"There's been times in the past when I've felt angry about it, I felt 'why me', when I've

just felt jealous of anyone who doesn't have to take medication every day" (Diane, 28, UC).

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However, despite this overarching sense of animosity towards experiences of living

with IBD, there were some participants who did state that they were happy despite their

circumstances, as described by one patient:

" I'm happy it's happened and definitely in a weird way happier than I was...I don't

know if I was as happy as I was before I was diagnosed but I'm definitely happier than I have

been" (Jason, 25, CD).

 Participants therefore described how there were a number of negative feelings towards their

illness. However, despite the resentment that participants displayed towards numerous

aspects of life with IBD, there was a resounding acknowledgement that positivity was

essential, with some even stating they were happier than they had ever been since their

diagnosis. Research has supported the existence and prevalence of depression (Graff et al.,

2009) in the IBD population and while the current study supports this to an extent, these

findings also suggest that positivity and happiness are possible. 

Overarching theme: Uncertainty

Transcending these aforementioned themes was a sense of uncertainty which was

particularly evident when the participants discussed the possible side effects and efficacy of

treatment, apprehension associated with having surgery and the possibility of relapsing.

Side effects. Participants regularly expressed their uncertainty with regards to the

possible side effects of their medications. The majority expressed general concern and

trepidation over the cumulative effects that their “toxic” medications could have:

“I think that's my biggest problem I have is all the medication, and how toxic they are.

And the side effects that come with medication and you have to take another drug to

counteract the side effects and there's always in the back of my mind” (Megan, 32, UC).

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The resounding majority of the participants’ concerns though surrounded their

relationship with steroidal treatment, with many complaining of a cycle of remission and

relapse when on steroids:

“Had the first flare when I was diagnosed, was on steroids, came off steroids and

flared again, and basically the first year after diagnosis was pretty much sort of flare, steroids,

flare, not really remission, so that was pretty tough in terms of thinking well am I ever gonna

get better” (Chloe, 33, UC)

Surgery. Another source of uncertainty was apparent when some of the participants

discussed their thoughts on surgery. Some of the interviewees described how numerous

surgeries had caused them to question whether it was worth it:

“I've had lots of negativity with it, surrounding it, obviously I've had lots of surgery

and after each surgery not working you kind of lose a bit of hope that it's gonna ever get

better” (Katie, 28, CD).

This also rang true for another participant despite admitting they were now “much

healthier”:

“For me this surgery was something that even though I did it I still sometimes think

oh I wish I hadn't done it. Even though now I feel so much healthier” (Jackie, 29, UC).

Relapse. Finally, uncertainty was evident when participants expressed foreboding

over the possibility of relapsing. For the majority, the prospect of relapsing was associated

with the potential for loss:

“I get really, really worried about it because when I had that massive flare I literally

felt like I lost everything, like I lost my job and I had to drop out of college and I had to stop

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doing all my drama classes and stuff and literally it just felt like the end of the world”

(Rebecca, 19, UC)

The revelation by one participant who admitted not feeling “fully adjusted” was

particularly striking, that even though they were aware of their rumination it was difficult to

overcome due to the fluctuating nature of their illness,

“I don't think I'm fully adjusted because I think you could have a flare that's just

totally different, you could have one that just knocks you for six and you're ill for a year or

something, so I feel pretty adjusted but I sort of feel conscious that I don't wanna feel quite

like that because that could all get knocked away” (Chloe, 33, UC)

The uncertainty associated with medication and surgery compounded with the

ambiguity surrounding the recipe for remission, and the fact that some of those who achieved

remission felt uncertain of how long it would remain, sheds light on the difficulty of dealing

with this relapsing-remitting disease. Particularly interesting too was the fact that the most

feared repercussion of relapse was that of loss rather than pain for example. Overall, this

uncertainty among the sample portrayed IBD as an illness that is still challenging even during

remission.

Final theme: The new normal

This previous theme of uncertainty was counterbalanced by our final theme of the

new normal. Participants displayed key psychological, social and behavioural methods of

coping by which they attempted to cope with their illness and overcome its uncertainty.

For example, some showed acceptance which involved a sense of letting go and

accepting there may be obstacles in the future regarding their health but that they would be

manageable:

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" I'm happy, I've accepted this is what I've got and this is how it's gonna be so it's

generally fine... I was scared and upset for a long while, but as I say that comes and goes, it's

still gonna happen occasionally" (Amy, 30, CD)

Some participants also alluded to the need to be resilient in dealing with IBD, using

phrases such as “I refuse to let it beat me”, “just got to get on with it”. One participant

discussed how he had to remain resolute in the face of his colectomy procedure to remove his

large intestine,

“I remember when they said they were going to remove it and I sort of, I thought you

can either be upset about it and down or you can get on with it" (Ian, 36, UC)

Participants also spoke of the importance of developing relationships that engendered

a feeling of a shared experience,

"I'm a member of a few forums and you discuss things with other people and you read

what other people's problems are and you realise you're not alone" (Malcolm, 44, UC)

Participants also almost unanimously spoke of the importance of endeavouring to live

a normal life:

"I have to still take child my out, still have to take him to activities and carry on as

normal" (Emily, 32, UC)

By employing these coping techniques, patients with IBD attempt to resolve the

uncertainty of their illness and combat, for example, the misconceptions of others as to what

their illness means, and achieve an equilibrium that balances their previous identity of a

'normal person' with their new identity of a person with IBD living a life that is as normal as

possible. Consequently, it is posed that the ultimate goal of living with IBD is to achieve a

'new normal'. Indeed, participants alluded to the understanding that a normal life is possible

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but that perhaps it would not be the normal they had once known. In order to reach this 'new

normal', it seems that one's identity as a patient with IBD must be counterbalanced by

encouraging one's sense of self and identity as a person who manages a chronic illness as a

part of their life rather than a patient whose existence revolves around this illness. This

supposition is encapsulated by two quotes in which both participants suggest an acceptance

of uncertainty and that regardless of the fluctuations in their illness they are living the life

they now have and are determined to live it to the fullest:

" I think it takes a long time to work out...well to just allow yourself to try and think about

your life beyond having Crohn's so when I've kind of sat down and thought about well I can

still have a full life regardless, I can still do the things I want to do it's just maybe gonna be a

little bit harder and it's a big revelation" (Amy, 30, CD)

"I live every day as it comes...as it gets thrown at me. There's good days and bad days. I

always try and set myself goals throughout so that I've got, however small, something to

work towards, because I think if you get too wound up about what's happening or what's

happened then you don't move forward. But it's like even after transplant there's bad times, ya

know, and it can happen out the blue still but you've got to enjoy the good times so that's all I

tend to do really. I don't see my life as any other person" (Katie, 28, CD)

2.5 Discussion

2.5.1 Summary of findings

The present study explored how people with IBD experience their condition and

highlighted three core themes relating to 'making sense of the illness', 'impact' and 'feelings'.

Transcending these three themes was an overarching notion of uncertainty which in turn was

resolved through a process of coping, resulting in a sense of 'the new normal'. In particular,

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participants described utilising a number of coping mechanisms to enable them to

counterbalance their identity as a patient with IBD with their identity as a person who

manages a chronic illness as part of their life, rather than a patient whose existence revolves

around their illness.

2.5.2 Links to literature

This concept of the new normal finds reflection in notions such as that of resolution,

adaptation and adjustment which is supported by, for example, the work of Charmaz (1983)

who argued that patients with chronic illnesses experience a "loss of self", as was

demonstrated in the current study. Patients however have agency in reconstructing their

identities in the midst of illness and are thus able to redefine what it means to be, in this case,

a patient with IBD but also the person who they were before diagnosis. As patients make

sense of their illness and derive meaning through interaction with other patients they may

develop a new understanding of their illness (Blumer, 1969) and may alter their sense of self

from a person living an abnormal life due to having a chronic illness, to one that is living a

new type of normal life with a chronic illness. It is also supported by Breakwell's (1986)

'identity process theory' where it was argued identity is dynamic and is altered through a

process of assimilation-accommodation. In this process the person assimilates new personal

information such as values or attitudes as well as social information through interpersonal

networks which adjust the existing identity structure, supporting once again the notion of an

identity change in the current IBD sample from abnormal to a new normal. Finally, our

hypothesis relates to 'cognitive consistency theory' since it argues that individuals are

motivated to act in ways and have thoughts, values and beliefs that are consistent with their

sense of self (Stryker, 1980). When one is unable to achieve this consistency then cognitive

dissonance occurs which motivates the adoption of behavioural and/or cognitive changes in

order to realign one's situations, behaviours, attitude and beliefs back in line with their

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aforementioned sense of self. This is true even if it requires the loss of a previously valued

identity. This relates to the realisation of a number of the interviewees that they were unable

to cope physically in their current state compared to their life before IBD. As such, many

accepted this fact with numerous participants reporting taking on a decreased work load and

lowering the expectations and demands they put on themselves. This altered sense of self, in

our case the 'new normal', may lower the cognitive dissonance the patients experience as

there is less failure experienced when comparing to their previous notion of 'normal'.

2.5.3 In summary

Overall, the current study attempts to conceptualise adaptation where previous

literature has not fully done so. Verissimo (2008), for example, mentioned how the

Inflammatory Bowel Disease Questionnaire, used for measuring health related quality of life

in IBD, is a construct that contributes to a better understanding of a patient's adaptation, but

like much of the IBD literature it is not solely focused on attempting to conceptualise

adaptation, rather it provides us with a measure by which we can associate one's level of

adaptation. We can now apply this knowledge of a 'new normal' into developing a measure

whereby one may quantify a patient's degree of adaptation to their illness which may have

therapeutic applications. As such, the results from the current study will be used to form the

basis of a new measurement of adaptation that could be used to explore the role of adaptation

on psychological wellbeing, such as quality of life and mood, as well as physical wellbeing,

such as disease severity, progression and recovery.

2.5.4 Methodological limitations

The study is not without its limitations however. It is arguable that our deductions are

based on a specific subset of patients with IBD due to our recruitment method. As

participants were all part of online support groups it is possible that certain aspects of

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adaptation that were raised, such as the importance of engendering a sense of shared

experience through social networking, are not representative of patients with IBD who do not

seek online support, thus bringing into question whether our notion of adaptation is

transferable to all IBD patients. In conjunction with this, all participants were from the UK,

again raising questions over the external validity of the findings. While the decision to recruit

participants exclusively from the UK was done for reasons of pragmatism, it is arguable that

adaptation as it has been conceptualised from the study findings are again not representative

of all patients with IBD, with patients from other countries and cultures possibly experiencing

the process of adaptation differently. Also a potential limitation of the study is that the

disease activity of the participants was not accounted or controlled for. While some research

has shown disease activity to be an important factor in the psychological functioning of

patients with IBD (Vidal et al., 2008), there is much research that also supports the notion

that neither the coping strategies (Larsson et al., 2008), nor the QoL (Magalhaes et al., 2014)

of patients with IBD are altered by disease activity. Similarly, Drossman et al.'s (1989)

research stated previously suggests that patients are perhaps more concerned with functional

status and disease concerns than disease activity, further justifying the decision to recruit

participants regardless of the current severity of their disease.

With regards to the framework used for the data analysis, while thematic analysis was

deemed an appropriate paradigm by which to analyse the data from the current study due to

its robustness in terms of being both flexible but also capable of providing a complex account

of the data, there are some limitations in taking this approach. One of these limitations is that

in using an analysis tool that is so flexible, the associated drawback of this is that the range of

conclusions that can be drawn from the data are broad, as indeed Braun and Clarke (2006)

themselves admitted. As such, the conceptualisation of adaptation that has been put forward

by the current study is undoubtedly subjective to a degree.

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2.5.5 Conclusion

To conclude, patients’ accounts of living with IBD centred around the ways in which

they made sense of their condition, its impact on their lives and the feelings it generated.

Permeating these experiences was an ongoing sense of uncertainty which drove patients to

employ a range of behavioural, social and psychological coping methods in order to achieve a

sense of a ‘new normal’ by finding an equilibrium between their lives before and after

diagnosis. These findings will now be used to inform a new measure of adaptation to IBD

which is the focus of Chapter 3.

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Chapter Three

Study 2: The development of a new measure to assess adaptation in

patients with IBD and its utility in predicting QoL: a cross-sectional study

3.1 Overview

The previous chapter utilised a qualitative study to explore and conceptualise the

notion of adaptation in patients with IBD. This was achieved through conducting semi-

structured interviews with patients, exploring the ways in which these patients had responded

emotionally, cognitively, socially and behaviourally in response to their illness from the time

of their diagnosis up until the time of being interviewed. Adaptation in this context was

subsequently concluded as being achieved by finding an equilibrium between one's life

before and after being diagnosed, finding a sense of a 'new normal' in the process.

The current chapter will now build upon this prior qualitative study in order to

develop a new measure of adaptation. The results of the qualitative study will guide the

formulation of this novel measure to assess adaptation to IBD which will then be refined

psychometrically. This measure of adaptation will then be associated with measures of both

sense making and QoL to assess whether the construct is synonymous with either construct or

measuring something unique. This chapter will then also assess the ability of this new

measure to predict outcomes in those with IBD in terms of QoL and its ability to predict this

outcome over and above the predictive ability of a measure of illness representations.

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3.2 Introduction

3.2.1 Literature review

IBD is an all-encompassing problem for patients, challenging them on a multitude of

levels contributing to psychological, social and behavioural problems and resulting in poor

quality of life. In line with this, Sajadinejad et al (2012) concluded their review of the

evidence by emphasising the need for good adaptation in order for patients to deal with the

symptoms of IBD and its psychological impact. To date, however, little is known concerning

what good adaptation means to patients with IBD or how it can be measured. The aim of the

present study is to operationalise adaptation as a means to develop a new measure to evaluate

adaptation in those with IBD.

Although little has been written about adaptation in patients with IBD, much chronic

illness research has investigated adaptation (and related concepts including adjustment and

acceptance) in patients with a multitude of different health backgrounds. For example

drawing upon Cognitive Adaptation Theory (Taylor, 1983), studies have explored adaptation

in those treated for coronary artery disease (Helgeson, 2003), late-stage cancer of varying

types (Christianson et al., 2013), skin cancer (Czajkowska et al., 2013) and type 1 diabetes

(Helgeson et al., 2014). This approach is framed by three underlying processes: a search for

meaning, attempting to regain mastery and self enhancement. In contrast, other studies have

drawn upon the Self Regulatory Model (Leventhal et al, 1980) focusing on conditions such as

Chronic Fatigue Syndrome, eating disorders and arthritis (Moss-Morris et al., 1996; Marcos

et al., 2007; Pimm & Weinman, 1998). From this perspective adaptation is seen as a product

of illness representations, taking a limited approach to the lived illness experience and thus

neglects the biopsychosocial nature of the condition. Furthermore, the operationalisation of

the notion of adaptation remains unclear.

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As a means to capture this broader approach to IBD, Devlen et al.(2014) developed

their own conceptual model of the impact of IBD which demonstrates the interconnectedness

of patients’ bowel and systemic symptoms not only with the psychological impact of the

disease, but also with the impacts of treatment, relationship difficulties, social and leisure

activity and work, school and parenting limitations. However, Devlen et al (2014) also

neglect to operationalise adaptation leaving it as the product of a number of illness

consequences rather than an entity in its own right. Likewise, whilst Voth and Sirois (2009)

measured adjustment to IBD, they operationalised it as a composite of coping efficacy,

acceptance and helplessness rather than as a standalone construct. A similar approach can

also be seen in other research on IBD which has emphasised adaptation as a form of coping

(Moskovitz et al., 2000; Jones et al., 2006; McCombie et al., 2015). Therefore, whilst models

such as the CAT or SRM could be used a basis to study adaptation in IBD their focus on

sense making neglects the broader impact of this condition and leaves the definition of

adaptation unclear. Furthermore, research specific to IBD may be broader in its perspective,

but again either offers an unclear definition of what this construct means or simply equates it

with other psychological processes.

In line with the conclusions drawn by Sajadinejad et al (2012), however, the present

paper argues that adaptation is core to the experiences of those with IBD. In addition, it also

argues that in order to be measured effectively this construct requires both clear

conceptualisation and operationalisation. This was the focus of a recent qualitative study

which explored how patients adapted to their IBD as a means to develop the measure

presented in the current paper (see Study 1 - Matini & Ogden, 2015). For this study, 20

patients were involved in semi-structured interviews concerning their experiences of

adapting to IBD. Questions revolved around how patients had changed, if at all, from the

time they were diagnosed until the time of interview with regards to how they felt, thought

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and behaved with respect to their illness. The results were analysed using thematic analysis

and indicated that adaptation involved the search for a ‘new normal’ with patients striving to

find psychological, emotional and behavioural equilibrium between their identity as a patient

with IBD and that of being a person existing beyond their illness identity. This emphasis on

sustaining equilibrium reflects Moss-Morris’ (2013) recent working model of adjusting to

chronic conditions which built upon more generic theories such as CAT and the SRM to

highlight how patient behaviours and the chronicity of an illness are crucial aspects in

enhancing understanding of adaptation. However, the results from the qualitative study by

Matini and Ogden (2015) also emphasised the relational processes that occur between the

patient and their illness. Moss-Morris (2013) does state that if a disease becomes progressive,

factors such as acceptance and self-compassion may become more important, touching on the

nature of adaptation as an iterative, ongoing process. What is missing, however, is the idea

that the patient and the illness are not two separate entities, a notion highlighted by Matini

and Ogden (2015) who concluded that patients with IBD demonstrated an identity that lay

somewhere along a spectrum from an illness identity to a person identity. Accordingly, the

self and the disease are better conceptualised as interconnected and in a dynamic dyad, rather

than the disease being a separate entity that the patient simply appraises. This parallels

Breakwell’s (1986) identity process theory which argued that identity is dynamic and is

altered through a process of assimilation– accommodation whereby a person assimilates new

personal information through interpersonal networks which adjusts the existing identity

structure. This finds reflection in evidence indicating that cancer survivors experience more

positive adjustment outcomes and psychological wellbeing after adopting a ‘survivor

identity’ (Chambers et al., 2012; Park et al., 2009). To date, however, this has not been

explored in the context of IBD.

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In summary, it is clear that the notion of adaptation is central to the experiences of

those with IBD and although more generic models such as CAT and the SRM provide some

insights into this construct, it remains poorly conceptualised and therefore difficult to

measure. Furthermore, whilst the working model (Moss-Morris, 2013) highlights the key role

of equilibrium, adaptation again remains unclear. Therefore the aim of the present study was,

firstly, to draw upon the findings of a recent qualitative study as a means to conceptualise

adaptation as involving the striving for psychological, emotional and behavioural equilibrium

which involves a ‘new normal’ reflected in a balance between the identity as a person and

that as a patient with a disease. Furthermore, the study aims to develop a new measure of

adaptation to IBD based upon this conceptualisation which could be used to quantify

adaptation in this patient group. Finally, the current study aims to determine whether the

adaptation to IBD questionnaire measures something distinct from sense making, in this case

with regards to illness representations, and QoL; to investigate whether the adaptation to IBD

questionnaire is useful in predicting QoL in patients with IBD; and lastly to assess whether

the process of adaptation, as measured by the questionnaire, aids in the prediction of QoL

scores over and above measures of sense making alone. QoL in the current study will be

measured differently for those patients with IBD who have a stoma and those without a stoma

since the IBDQ uses slightly different items to account for differences in the lived experience

between the two groups. The results will therefore discuss how well the adaptation to IBD

questionnaire subscales predict QoL scores for those with a stoma (using the IBDQ-S) and

without a stoma (using the IBDQ) separately.

3.2.2. Steps involved in development and validation of the adaptation to IBD questionnaire

For clarity, Table 2 below outlines the scope of the current study in terms of what

steps of a scale development and validation will be undertaken and what steps have been

omitted.

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Table 2: Scale development and validation steps included and not included

Steps included Steps not included

Item generation Confirmatory factor analysis

Data screening Test-retest reliability

Exploratory factor analysis Content validity

Reliability assessment

Face validity

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3.3 Method

3.3.1 Design

The study used a quantitative, cross sectional design.

3.3.2 Sample

Participants were recruited as part of an opportunity sample from social networking

sites (Twitter and Facebook), as well as dedicated IBD online support website forums.

Participants were required to be at least 16 years of age, capable of providing informed

consent, self-reporting a diagnosis of IBD and able to understand English. Participants

described their gender, age, highest level of education, ethnicity and IBD diagnosis. In total

388 participants began the study and of these 309 completed the study giving a completion

rate of 80%. Of the 309 completers, seven were diagnosed with ‘indeterminate colitis’, 83

with UC and 217 with CD. Two participants were excluded from the analysis as their

diagnosis was described as IBS. Of the remaining 307 participants, 52 were male (16.9%)

and 255 were female (83.1%) and the mean age was 34.14 years for the sample (range = 16-

68 years). The most common level of qualification for the sample was undergraduate degree

(n=122) and the most common ethnicity was White British (n=154). Of the 307 participants,

41 reported having a stoma, while the remaining 266 participants reported not having a

stoma.

3.3.3 Procedure

The study was advertised on social networking sites and support groups providing

brief details concerning the aims of the study, a contact for those requiring further details and

a hyperlink to the Qualtrics study page with the online adaptation to IBD questionnaire (See

Appendix I), the Brief Illness Perception Questionnaire (See Appendix J), the Inflammatory

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Bowel Disease Questionnaire (See Appendix K), and which also included an information

sheet (See Appendix F), consent form (Appendix G) and debriefing page at the end for those

taking part (Appendix H). Ethical approval was obtained from the University Ethics

Committee (See Appendix N).

3.3.4 Measures

i) Adaptation to Inflammatory Bowel Disease questionnaire: Participants completed the

original, 40-item version of the Adaptation to Inflammatory to Inflammatory Bowel Disease

questionnaire (A-IBD; See Appendix I). For this study, QoL will be predicted based on the

final version of the A-IBD that will be formulated in this study. This measure assesses the

process of adaptation to IBD based on one's degree of 'patient identity', 'person identity',

'acceptance' and 'expectations'.

ii) Brief Illness Perception Questionnaire: Participants completed the Brief IPQ (Broadbent

et al., 2006; See Appendix J) which assesses the process of sense making in terms of

cognitive and emotional representations of illness relating to consequences, timeline, personal

control, treatment control, identity, concern, coherence and emotion. Permission to reproduce

this measure has been granted by Elizabeth Broadbent.

iii) Inflammatory Bowel Disease Questionnaire: The outcome measure of interest involved

in this study is the IBDQ (Guyatt et al., 1989; See Appendix K). This measure of subjective

health demonstrates excellent validity and reliability (Pallis et al., 2004) as a tool to measure

health-related quality of life in adult patients with IBD and has been used extensively in

research and clinical trials since 1997 and was thus deemed as the most suitable way by

which to measure HRQoL in this sample. Within the questionnaire are 32 questions, each

with a graded response numbered 1 through 7 usually indicating a response ranging from "all

of the time" to "none of the time". The questions relate to four categories of HRQoL in IBD,

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namely 'bowel systems', involving 10 questions such as "How frequent have your bowel

movements been during the last two weeks?", 'emotion health', involving 12 questions such

as "How often during the last 2 weeks have you felt frustrated, impatient, or restless?",

'systemic systems', involving five questions such as "How often has the feeling of fatigue or

of being tired and worn out been a problem for you during the last 2 weeks?", and 'social

function', involving a further five questions such as "How often during the last 2 weeks have

you been unable to attend school or do your work because of your bowel problem?". All 32

questions were phrased with reference to the last 2 weeks of the participants' experiences. 266

participants completed the IBDQ. There is an alternate version of the questionnaire, the

IBDQ-S (See Appendix L), designed for patients with IBD with an ileostomy or colostomy

appliance. This form of the questionnaire varies from the standard IBDQ only slightly on six

questions in order to phrase the items in a more appropriate manner for patients of this type,

replacing questions such as "How much of the time during the last 2 weeks have you felt

embarrassed as a result of your bowel problem?" with questions such as "How frequently

have you had to empty your colostomy or ileostomy appliance during the last two weeks?" 41

participants completed the IBDQ-S. Permission to reproduce this measure has been granted

by McMaster University.

3.4 Results

Developing the new measure of adaptation to IBD (A-IBD)

3.4.1 Conceptualisation

The previous qualitative study by Matini and Ogden (2015) identified three core

themes from the experiences of these adapting to IBD. These were making sense of the

illness, impact of IBD and feelings of IBD. These find close parallels to models of sense

making and illness representations in chronic illness (Taylor et al, 1983; Leventhal et al,

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1980). It was argued, however, that transcending these themes was the key theme of

uncertainty which was managed through a process of striving to find a new normal. Central

to this process was the balance between the identity as a person (without the illness) and the

identity as a patient (with the illness). Furthermore it was argued that this balance was

achieved via a degree of acceptance and expectations of a positive future. In line with this,

the present study conceptualised adaptation to IBD in terms of four constructs: identity as a

person; identity as a patient; acceptance; expectations. This perspective draws upon the

working model by Moss-Morris (2013) but also reflects theories of identity (Breakwell,

1986).

3.4.2 Operationalisation

The four constructs outlined above were each operationalised using 10 items derived

from the qualitative results from Matini and Ogden (2015). The items were intended to reflect

as closely as possible the most pertinent aspects of the aforementioned study’s results, mainly

the notion of ‘person identity’ and ‘patient identity’, but also the underlying themes of

‘acceptance’ and ‘expectations’. Examples are as follows:

Identity as person: "I exert myself just as much as I used to before my diagnosis"; "I go out

and socialise regardless of any symptoms I may be experiencing"; "I try and live a normal life

like everyone else"

Identity as a patient: "I fear that my illness will stop me achieving my goals in life"; "If I

exercise then my symptoms will return"; "Life will never be the same again"

Acceptance: "Some days I will not be as productive as I want to be"; "I am comfortable

discussing my symptoms with my family and close friends"; "I feel like my illness is a

burden"

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Expectations: "I will be cured from my illness one day"; "I will live the life I had before

being diagnosed"; "I will achieve everything I always wanted to in life"

This created the 40 items included in the initial questionnaire which were each rated

on a 5 point Likert scales ranging from 'strongly disagree' (1) to 'strongly agree' (5). These

response options were chosen since they enabled endorsement of a statement. Enabling

participants to endorse statements by agreeing or disagreeing encourages honesty and

reflection as participants align themselves with other people in a similar situation. Higher

scores for each item reflect higher scores on each of the four subscales.

40 initial items were included to enable items to be excluded throughout the process of

questionnaire development.

3.4.3 Assessment of the scale’s psychometric properties

The psychometric properties of scales were assessed and refined using: i) data

screening; ii) the principle axis factoring method of factor extraction to reduce the items into

a factor structure that was both statistically and semantically coherent; iii) reliability

assessment using Cronbach's alpha.

Data screening: Using a range of criteria based upon the ratio between sample size and

number of items (eg. Comrey, 1973; Kass & Tinsley, 1979; Field, 2005) the sample of the

current study (n=307) was deemed appropriate for a factor analysis of 40 items. Furthermore,

the Kaiser-Meyer-Olkin (KMO) statistic was 0.880 indicating that the sampling adequacy of

the current data set was ‘meritorious’. To explore inter correlation between variables a

correlation matrix was computed for all 40 items. From this, Bartlett’s test of sphericity

statistic was highly significant (p<.001) indicating that the data was factorizable. However,

the correlation matrix was further assessed to investigate whether any one variable failed to

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correlate with at least one other variable at a value of less than 0.3 (Field, 2005). As such, 4

items (“I worry that when I go out with my friends I may suddenly need the toilet”, “I spend

time researching medications or other treatment options”, “I am comfortable discussing my

symptoms with my family and close friends” and “Surgery will completely turn things

around for me”) were excluded from the analysis. Finally, the degree of multicollinearity was

assessed using the determinant statistic (Field, 2005). The determinant was 0.00000105

which is less than the desired value. However, no two items were correlated above r = 0.8

suggesting that factor analysis was an acceptable approach.

Principle axis factoring: Principle axis factoring was chosen as this was an exploratory study.

This method takes into account both the latent variables that contribute to the underlying

factor structure and the difference between shared and unique variance and, as the data was

largely not normally distributed (Fabrigar et al., 1999). An oblique rotation method was

chosen for the current analysis to aid interpretability and as it allows for the underlying

factors to correlate with one another (Field, 2005). The data was then run through a series of

factor analyses as follows. Criteria for inclusion of any given item were: a cut off of factor

loading >0.4 (shown in bold in the factor loadings tables below), a communality statistic of

>0.3 and no cross loading.

Solution 1: Initial principle axis factoring revealed 11 factors that had eigenvalues greater

than 1.0 and which explained 21.3%, 4.9%, 4.2%, 4.0%, 2.4%, 1.9%, 1.6%, 1.5%, 1.3%,

1.2% and 1.1% of the total variance accounting for 45.3% of the total variance explained.

However, the scree plot indicated a four factor solution according to Cattell (1966) Solution

2: A forced 4 factor solution resulted in factors explaining 22.7%, 4.7%, 4.2% and 3.4% of

the total variance, accounting for a total of 35.1% of the total variance. The scree plot still

showed a 4 factor solution. However, due to loading on more than one factor or having a

communality statistic <0.3, 12 items were removed.

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Solution 3: A forced 4 factor solution was re-run with the remaining 28 items. The scree plot

again supported a four factor solution with the four factors now explaining 23.6%, 6.5%,

5.3% and 4.0% of the total variance, accounting for an improved total of 39.4% of the total

variance. A further 2 items were removed due to their low communality statistic (0.152) and

high cross-loading on another factor.

Solution 4: The next analysis was run on the remaining 26 items. The factors this time

explained 23.8%, 6.7%, 5.4% and 4.2% of the total variance, accounting for an improved

total of 40.2% of the total variance explained. From this analysis a final 8 items were

removed due to low communality and high cross loading.

The final solution: The final solution with 18 items consisted of four factors with no cross

loading and with all factor loadings>0.4. There were labelled as follows: Factor 1 was

labelled ‘Patient identity’ and consisted of 6 items (eg.(“I fear that my illness will stop me

achieving my goals in life”; “I feel like my illness is a burden”, “Life will never be the same

as it was before my diagnosis); factor 2 consisted of 5 items and was labelled ‘Person

identity’ (eg. “I exert myself just as much as I used to do before my diagnosis”; “I try and

live a normal life like everyone else”; “I still keep up my hobbies and interests that I had

before my diagnosis); factor 3 consisted of 4 items and was labelled ‘Expectations’ (eg. “I

expect my doctor will eventually find a medication that solves my problems”; “I expect

things will only get easier with time”; “I believe my fatigue will sort itself out eventually”)

and factor 4 consisted of 3 items and was labelled ‘Acceptance’ (eg. “I accept that I have a

chronic illness which has no cure”; “I am accepting of the possibility of future flare ups of

my symptoms”; “I just have to keep moving forward with my life”). These four factors were

corroborated by the scree plot, with the factors accounting for 22.8%, 8.0%, 5.5% and 4.8%

with the total explained variance being 41.2%. The KMO statistic for this final solution was

‘meritorious’ at .853 and the determinant value now indicated no concern for

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multicollinearity at .009. In addition, Bartlett’s test of sphericity was once again highly

significant at p<.001. The factor loadings for each factor and its items are shown in Table 3

and the means and standard deviations for each item are shown in Table 4. The factor

loadings demonstrate strong loadings for teach item on their respective factors with very little

cross loading suggesting the 4 factor solution was appropriate. The standard deviation

statistics meanwhile suggest a generally diverse range of responses on the 18 item scale, with

the three items of the ‘acceptance’ subscale demonstrating the least variance in responses of

the four subscales.

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Table 3: Factor loadings for 18 item adaptation questionnaire (n=307)Rotated factor loadings

Item 1. Patient identity

2. Person identity

3. Acceptance 4. Expectations

I fear that my illness will stop me achieving my goals in life

-.63 -.16 .04 .05

I feel like my illness is a burden -.63 -.16 .11 .00

Life will never be the same as it was before my diagnosis

-.59 -.11 -.14 -.11

I get angry or upset when I experience symptoms

-.59 .13 .11 .00

I wonder about how my health will be in the future

-.59 .02 -.12 .03

There is nothing I can do to make myself feel better

-.52 -.03 .06 -.17

I exert myself just as much as I used to do before my diagnosis

.13 .67 .14 -.06

I try and live a normal life like everyone else

.00. .64 -.02 .01

I still keep up with my hobbies and interests that I had before my diagnosis

.17 .63 -.02 -.00

I ignore any fatigue I may be experiencing and try to function as normal

-.13 .62 -.04 .02

I go out and socialise regardless of any symptoms I may be experiencing

.07 .49 -.02 .13

I accept that I have a chronic illness which has no cure

-.08 -.07 -.68 .00

I am accepting of the possibility of future flare ups of my symptoms

.09 -.06 -.61 -.12

I just have to keep moving forward with my life

.04 .26 -.41 .08

I expect my doctor will eventually find a medication that solves my problems

-.01 -.07 -.11 .68

I expect things will only get easier with time

.19 .07 -.02 .59

I believe my fatigue will sort itself out eventually

.09 .10 .05 .56

I will be cured from my illness one day

-.10 .00 .16 .54

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Table 4: Means and standard deviations for 18 item adaptation questionnaireItem Mean Standard Deviation

I fear that my illness will stop me achieving my goals in life

3.50 1.27

I feel like my illness is a burden 3.74 1.04

Life will never be the same as it was before my diagnosis

3.93 1.09

I get angry or upset when I experience symptoms

3.88 .92

I wonder about how my health will be in the future

4.42 .74

There is nothing I can do to make myself feel better

2.49 1.05

I exert myself just as much as I used to do before my diagnosis

2.54 1.26

I try and live a normal life like everyone else

4.03 .93

I still keep up with my hobbies and interests that I had before my diagnosis

2.95 1.25

I ignore any fatigue I may be experiencing and try to function as normal

3.351.11

I go out and socialise regardless of any symptoms I may be experiencing

2.68 1.20

I accept that I have a chronic illness which has no cure

4.18 .82

I am accepting of the possibility of future flare ups of my symptoms

4.27 .77

I just have to keep moving forward with my life

4.31 .58

I expect my doctor will eventually find a medication that solves my problems

2.67 1.03

I expect things will only get easier with time

2.65 1.07

I believe my fatigue will sort itself out eventually

2.26 1.01

I will be cured from my illness one day

2.29 1.05

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3.4.4 Reliability assessment

Cronbach’s alphas were calculated for each subscale to assess their internal reliability.

Patient identity (6 items) was 0.8; person identity (5 items) was 0.8; expectations (4 items)

was 0.7 and acceptance (3 items) was 0.6. As such, the patient identity, person identity and

expectations scales were found to have good internal reliability, while the acceptance

subscale suggested comparatively low reliability. None of these alphas could be improved by

deleting items and no items from any of the factors had a corrected item-total correlation of

less than 0.41, suggesting all items correlated well with their respective factor. The 18 item

scale also appeared to demonstrate sufficient face validity, highlighting psychological,

emotional, social and behavioural aspects that are consistent with the notion of adaptation.

3.4.5 Final scale with response options and instructions

The final, 18 item adaptation to IBD questionnaire (A-IBD) would thus be presented

to prospective patients as shown below, with instructions and response options included:

Adaptation to IBD Questionnaire

Read the following statements and mark your level of agreement with each statement based

on the response options listed below each statement. If you do not have an opinion on a

particular statement, please mark “Neither agree nor disagree”.

1) I fear that my illness will stop me achieving my goals in life

Strongly disagree, Disagree, Neither agree nor disagree, Agree, Strongly Agree

2) I feel like my illness is a burden

Strongly disagree, Disagree, Neither agree nor disagree, Agree, Strongly Agree

3) Life will never be the same as it was before my diagnosis

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Strongly disagree, Disagree, Neither agree nor disagree, Agree, Strongly Agree

4) I get angry or upset when I experience symptoms

Strongly disagree, Disagree, Neither agree nor disagree, Agree, Strongly Agree

5) I wonder about how my health will be in the future

Strongly disagree, Disagree, Neither agree nor disagree, Agree, Strongly Agree

6) There is nothing I can do to make myself feel better

Strongly disagree, Disagree, Neither agree nor disagree, Agree, Strongly Agree

7) I exert myself just as much as I used to before my diagnosis

Strongly disagree, Disagree, Neither agree nor disagree, Agree, Strongly Agree

8) I try and live a normal life like everyone else

Strongly disagree, Disagree, Neither agree nor disagree, Agree, Strongly Agree

9) I still keep up with my hobbies and interests that I had before my diagnosis

Strongly disagree, Disagree, Neither agree nor disagree, Agree, Strongly Agree

10) I ignore any fatigue I may be experiencing and try to function as normal

Strongly disagree, Disagree, Neither agree nor disagree, Agree, Strongly Agree

11) I go out and socialise regardless of any symptoms I may be experiencing

Strongly disagree, Disagree, Neither agree nor disagree, Agree, Strongly Agree

12) I accept that I have a chronic illness which has no cure

Strongly disagree, Disagree, Neither agree nor disagree, Agree, Strongly Agree

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13) I am accepting of the possibility of future flare ups of my symptoms

Strongly disagree, Disagree, Neither agree nor disagree, Agree, Strongly Agree

14) I just have to keep moving forward with my life

Strongly disagree, Disagree, Neither agree nor disagree, Agree, Strongly Agree

15) I expect my doctor will eventually find a medication that solves my problems

Strongly disagree, Disagree, Neither agree nor disagree, Agree, Strongly Agree

16) I expect things will only get easier with time

Strongly disagree, Disagree, Neither agree nor disagree, Agree, Strongly Agree

17) I believe my fatigue will sort itself out eventually

Strongly disagree, Disagree, Neither agree nor disagree, Agree, Strongly Agree

18) I will be cured from my illness one day

Strongly disagree, Disagree, Neither agree nor disagree, Agree, Strongly Agree

3.4.6 Association of the A-IBD with existing measures of sense making and QoL

The A-IBD sub scales were computed, descriptive statistics were run and scores were

correlated with the subscales of the Brief IPQ and IBDQ. Descriptive statistics indicated that

the mean 'patient identity' score was 3.66 (S.D.=0.72), the mean 'person identity' score was

3.11 (S.D.=0.83), the mean 'acceptance' score was 4.3 (S.D.=0.54) and the mean

'expectations' score was 2.47 (S.D.=0.76). The correlation matrix is shown in Table 5.

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Table 5: Correlations between A-IBD, Brief IPQ and IBDQ/IBDQ-S

Brief IPQ IBDQ IBDQ-S

A-IBD Cons Time P.

Control

Treat.

Control

Ident-

ity

Conc-

ern

Coh-

erence

Emot.

rep

Bowel

sympt

Emot.

health

Syst.

sympt

Social

funct

Bowel

sympt

Emot.

health

Syst.

sympt

Patient

identity

.46** -.15* .34** .28** -.44** -.33** -.06 -.39** -.22** -.40** -.33** -.31** .41** -.05 -.04

Person

identity

-.48*

*

-.15* .34** .28** -.44** -.33** -.06 -.39** .27** .36** .37** .44** -.53** -.02 -.01

Accept-

ance

-.07 .19** .18** .12* -.08 -.08 .33** -.10 -.00 .06 -.02 .03 -.13 .06 .05

Expect-

ations

-.25*

*

-.30** .26** .23** -.28** -.21** -.12* -.29** .18** .26** .27** .27** -.46** -.07 -.06

The results showed that ‘Patient identity’ was significantly positively correlated with

the consequences, personal control and treatment control subscales of the Brief IPQ and

negatively correlated with timeline, identity and concern. Further, ‘Patient identity’ was also

positively correlated with bowel symptoms for those with a stoma but negatively correlated

with all other subscales of the IBDQ. ‘Person identity’ was positively correlated with

personal control and treatment control of the Brief IPQ but negatively correlated with most

other subscales. However, whereas ‘Person identity’ was positively correlated with all

subscales of the IBDQ, it was negatively correlated with bowel symptoms for those with a

stoma. The scale reflecting ‘Acceptance’ was positively correlated with timeline, personal

control, treatment control and coherence but unrelated to consequences, identity, concern and

emotion or any subscales of the IBDQ or IBDQS. Finally, ‘Expectations’ was positively

correlated with personal control and treatment control of the Brief IPQ but negatively

correlated with consequences, timeline, identity, concern, coherence and emotion. It was

also positively correlated with all subscales of the IBDQ but negatively correlated with the

bowel symptoms subscales of the IBDQ. The subscales of the A-IBD therefore show some

relationships with illness representations as measured by the Brief IPQ and Quality of life as

measured by the IBDQ (and IBDQ-S). The highest correlation coefficient was -0.53 ('person

identity' and 'bowel symptoms' on the IBDQ-S) which was moderate in strength whilst the

remaining correlations demonstrated weaker or no association indicating that although this

new measure shares some of the variance with existing scales it is also making a novel

contribution to the concept of adaptation. It is also of note that correlations between the A-

IBD differed between the IBDQ and the IBDQS indicating that adaptation may have a

different profile in these two populations.

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3.4.7 Using the A-IBD subscales to predict QoL

This section will begin with assessing the ability of the subscales of the A-IBD to

predict QoL, as measured by the IBDQ, firstly in the non-stoma group (using the standard

form of the IBDQ) and then in the stoma group (using the adjusted version to be made

applicable for those with stomas, known as the IBDQ-S). Extensive data screening was

carried out in both cases to ensure a sufficient regression model could be produced for both

groups. The interpretation of the regression models and coefficients follows the data

screening procedures.

Non-stoma group

Data screening – Sample size

Many rules of thumb exist for recommended sample sizes in order to obtain a reliable

regression model. Generally, however, 10 to 15 participants per predictor in the model is

deemed suitable (Field, 2005), meaning the current analysis would require roughly 40 to 60

participants, respectively, given four predictors are involved in the current model. As such, it

is apparent that the total number of participants without stomas (266) meet this suggested

requirement comfortably. The non-stoma group also far exceeds Green’s (1991) more

aggressive minimum recommendation formula of 104 + k where ‘k’ is the number of

predictors in the model, creating a total minimum recommendation of 108 in this instance.

Furthermore, the sampling size adequacy of this group was supported by the guidelines

proposed by Miles and Shelvin’s (2001) graphs which illustrate the sample sizes needed

when expecting small, medium and large effect sizes at different levels of power and with

differing numbers of independent variables. Cohen (1988) proposes power to be at least .8,

i.e. there is an 80% probability of the test correctly rejecting the null hypothesis when the

alternative hypothesis is true, and based on this criteria Miles and Shevlin’s graphs suggest

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the non-stoma group’s sample size is comfortably sufficient enough to detect a medium effect

size given there are four independent variables (a minimum of 90 participants is suggested for

this effect size).

Data screening – Independence of residuals

One assumption of multiple regressions is that for any two observations the residual

terms should be uncorrelated and thus independent. In other words, they should demonstrate

a lack of autocorrelation. The Durbin-Watson test assesses whether adjacent residuals are

correlated with values near 2.0 suggesting no significant autocorrelation (Piegorsch & Bailer,

2005). In this instance, the Durbin-Watson statistic was 1.910 and thus sufficiently met this

particular assumption.

Data screening – Assumption of linearity

Since the results are being generated using a linear multiple regression model it

follows that the relationship being modelled must also be linear. In order to test this, a linear

relationship between the dependent and independent variables collectively needed to be

established and was achieved by formulating a scatterplot of the studentized residuals against

the unstandardized predicted values. The plot that was generated indeed indicated a linear

relationship in this instance since the residuals formed a horizontal band as opposed to

showing any curves. However, a linear relationship also needed to be established between the

dependent variable and each of the independent variables using partial regression plots. Here

it was confirmed that all relationships between the independent and dependent variables were

linear and thus met the current assumption, albeit the relationship between ‘patient identity’

and IBDQ total and ‘person identity’ and IBDQ total demonstrated a far more pronounced

linear relationship than ‘hope’ and IBDQ total and ‘acceptance’ and IBDQ total.

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Data screening – Homoscedasticity

In order to check that the residuals are equal for all values of the dependent variable

(in other words, the variance along the line of best fit remains similar at each point on the

line), the scatterplot that was assessed with regards to the issue of linearity in the previous

section (studentized residuals against the unstandardized predicted values) was once again

consulted. In order to satisfy the assumption of homoscedasticity this plot needed to

demonstrate an even spread of the residual values, i.e. no particular pattern should have been

evident, rather there was an approximate constant spread as one moves across the predicted

values axis. In the current sample, homoscedasticity did indeed seem apparent due to visual

inspection of the random scattering evident in the scatterplot.

Data screening – Multicollinearity

Occurring when there are two or more independent variables that are too highly

correlated with one another, multicollinearity causes issues in understanding exactly which of

these independent variables then contributes to the variance explained in the dependent

variable. Consulting first the correlations table of the multiple regression output, it can be

seen that multicollinearity was not seemingly an issue since none of the independent

variables correlated higher than .558, with correlations above .7 or .8 causing concern.

Subtler forms of multicollinearity however are picked up by the ‘tolerance’ and ‘VIF’

statistics. Generally, tolerance values of less than .1 are a serious cause for concern and

Menard (1995) even suggests values below .2 to be an issue. In this instance the lowest

tolerance value was .786 and the highest was .973, thus not raising any red flags as to

possible multicollinearity. The VIF is merely the reciprocal of tolerance (1 divided by

tolerance) so naturally these values are also not indicative of multicollinearity.

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Data screening – Outliers, high leverage values and highly influential points

No outliers were detected for the current sample since no ‘casewise diagnostics’ table

was produced in the analysis output. However, this merely detects outliers based on

standardized residuals that are +/-3 standard deviations. Consulting the studentized deleted

residuals in conjunction with this supported the prior finding as once again no residuals in

this category were greater than +/-3 standard deviations. ‘Leverage values’ can also be

consulted to distinguish if any particular observed values of the independent variable vary

drastically from their predicted value as predicted by the regression model. General rules of

thumb for this statistic suggest values less than .2 as safe (Hoaglin, 1992), all of which met

this criterion in the current sample. Similarly, influential points can be assessed by the

‘Cook’s distance’ statistic which measures the overall influence of a case on the subsequent

regression model. For this statistic, Cook and Weisberg (1982) suggest values greater than 1

may be a cause for concern, but no such values were found in the current sample.

Data Screening – Normally distributed residuals

It is a necessity that when running inferential statistics that the residuals (the errors in

prediction) need to be normally distributed (unlike the independent variables themselves). In

other words, the differences between the generated model and the observed data should be

zero or negligible. A histogram of the standardized residuals with a distribution curve is one

way to test this assumption. In this case, the histogram with a superimposed distribution

curve appeared to show a normal distribution as was desired. In addition, the mean value was

approximately 0 and the standard deviation 1, both supporting the notion that the residuals

were normally distributed. Concerns for the violation of the assumption of normality of

residuals was also eased by the P-P plot which showed very few deviations from normality as

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demonstrated by most observed residuals lying along the straight, diagonal line which

indicates a perfectly normal distribution.

Method of regression

Forced entry was the chosen regression method since no prior literature on adaptation

and what constitutes it dictated substantive theoretical importance as to what independent

variables we should favour as contributing more to the regression model than others. As such,

stepwise, hierarchical methods were deemed not applicable.

Interpreting the regression model – Total variation explained

The model summary indicates a multiple regression coefficient (R) value of .671,

suggesting that the linear association between the predicted scores of the regression model

and the actual values of the dependent variable (quality of life as measured by the IBDQ) was

moderately strong to strong. However, while this gives an indication as to the goodness of the

model fit, the R2value of .450 is more indicative of this. This value accounts for how much of

the variability in IBDQ scores was accounted for by the four factors, i.e. 45.0%. The adjusted

R2meanwhile shows that when accounting for shrinkage that occurs if the model were applied

to the IBD population (of patients without stomas) as opposed to the sample in the current

study, this time a statistic of .441 was found meaning that the model would account for

approximately only .9% less variance in IBDQ scores. Altogether, according to Cohen’s

(1988) effect size brackets, .441 is indicative of a moderate effect size.

Interpreting the regression model – Statistical significance of the model

The statistical significance of the overall model was highly significant (p<.001). What

this suggests is that the addition of all of the four independent variables led to a model that is

statistically significantly better at predicting IBDQ scores than the mean model and is a

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statistically significantly better fit to the data than the mean model. Altogether, this means

that ‘person identity’, ‘patient identity’, ‘hope’ and ‘acceptance’ significantly predicted IBDQ

scores, F(4, 261) = 53.332, p<.001.

Interpreting the coefficients

The ‘person identity’ and ‘patient identity’ coefficients were both statistically highly

significant (p<.001), thus both were deemed significant predictors of IBDQ scores ((t(261) =

7.453, p<.001) and (t(261) = -7.338, p<.001), respectively). The ‘hope’ and

‘acceptance’variables however were not significant ((t(261) = 1.313, p=.190) and (t(261) =

1.290, p=.198), respectively) and thus did not demonstrate a convincing contribution to the

prediction of IBDQ scores. With regards to the variable coefficients (B), for every increase of

one point on the person identity scale, IBDQ scores raise by 17.140 (B = 17.140), while for

every increase of one point on the patient identity scale, IBDQ scores fall by 19.494 (B = -

19.494). Unsurprisingly, hope and acceptance were less impactful with one point on the hope

scale raising IBDQ by 3.214 (B = 3.214) and one point on the acceptance scale raising IBDQ

by 4.066 (B = 4.066).

Stoma group

Data screening – Sample size

While not meeting the recommended sample size as suggested by Green’s (1991)

aforementioned 104+ k formula, the current sample did meet the more liberal guidelines of

Field’s (2005) 10 to 15 participants per predictor variable since there were 41 participants

who completed the IBDQ-Stoma. Even more conservative suggestions have been made by

Austin and Steyerberg (2015) who claim that as few as two participants per independent

variable, which would amount to eight required participants in this instance,is sufficient in

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order to estimate regression coefficients of a multiple regression model with relative bias of

less than 10%.

Data screening – Independence of residuals

As with the non-stoma group, the Durbin-Watson statistic did not cause any concerns

with regards to autocorrelation between the residual terms since the statistic was reasonably

close to the previously outlined, desired value of 2 at 1.825.

Data screening – Assumption of linearity

The scatterplot of the stoma group’s unstandardized predicted residuals vs their

studentized residuals depicted a somewhat linear relationship as the residuals appeared to be

ordered in a horizontal band with no apparent curvature. The partial regression plots, while

not as easily interpreted as those of the non-stoma group, did appear to satisfy the assumption

of linearity, particularly in the case of the relationship between IBDQ-Stoma total scores and

the ‘patient identity’ scale scores which showed a more pronounced linear relationship.

Data screening – Homoscedasticity

The previous scatterplot depicting the unstandardized predicted residuals against the

studentized residuals of the IBDQ-Stoma group demonstrated that the residuals were evenly

spread across the unstandardized predicted value axis, with no fanning or funnelling in the

pattern of the data that would signal a lack of homoscedasticity.

Data screening – Multicollinearity

Consulting the correlations table of the regression output, although ‘patient identity’

and ‘person identity’ scores did correlate very close to the .7/.8 mark that was previously

described as the point at which concerns for multicollinearity begin to arise at -.697, the

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tolerance (and VIF) statistics allayed this fear. The lowest tolerance statistic was .588,

comfortably higher than the .1/.2 mark that causes concerns for multicollinearity and since

this is regarded as a stronger means of detecting this issue, this assumption was deemed to

have been met satisfactorily.

Data screening – Outliers, high leverage values and highly influential points

No outliers were detected based on the standardized residuals (that are highlighted in

the regression output should they arise). Similarly, the studentized deleted residuals brought

up very little in the way of outliers besides one case where the residual was found to be

greater than -3.03 standard deviations. However, since the Leverage value for this case was

below .2 and Cook’s distance was below 1, this case was not deleted. In addition, in terms of

Leverage values, only two cases proved to be above the ‘safe’ .2 value and in the category of

‘risky’ between .2 and .5 (.38 and .31). However, once again both cases were retained since

their Cook’s distance values were comfortably below 1. In fact, all cases demonstrated

Cook’s distance values comfortably below the cut off of 1, with .39 being the highest value.

Data Screening – Normally distributed residuals

A histogram of the standardized residuals with a superimposed distribution curve

once again appeared to show a normal distribution of the residuals as desired. In conjunction,

the mean and standard deviation was also once again virtually equal to 0 and 1, respectively,

supporting the idea that the residuals were normally distributed. While the current P-P plot

depicted slightly more deviations from normality than that of the non-stoma group, it still did

not appear to demonstrate significant deviation from normality as most observed residuals lay

close to the diagonal line.

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Method of regression

Forced entry was once again chosen as the regression method.

Interpreting the regression model – Total variation explained

The model summary indicates multiple regression coefficient (R) value of .721,

suggesting that the linear association between the predicted scores of the regression model

and the actual values of the dependent variable (quality of life as measured by the IBDQ-

Stoma) was strong. The R2value was .520, meaning that the for 52.0% of the variance in the

IBDQ-Stoma scores could be accounted for by the four factors. The adjusted R2value

was .467, meaning that if applied to the general population (IBD patients with stomas) the

current model would account for approximately 5.3% less of the variance in IBDQ-Stoma

scores. Altogether, .467 once again indicated this result represented a medium effect size.

Interpreting the regression model – Statistical significance of the model

The statistical significance of the overall model was highly significant (p<.001),

suggesting that the addition of all of the four independent variables led to a model that is

statistically significantly better at predicting IBDQ-Stoma scores than the mean model and is

a statistically significantly better fit to the data than the mean model. Altogether, this means

that ‘person identity’, ‘patient identity’, ‘hope’ and ‘acceptance’ significantly predicted

IBDQ-Stoma scores, F(4, 36) = 9.766, p<.001.

Interpreting the coefficients

The ‘patient identity’ coefficient was statistically highly significant t(36) = -3.797,

p<.05. However, the remaining three independent variables of ‘person identity’ (t(36) = .879,

p = .385), ‘hope’ (t(36) = 1.163, p = .253) and ‘acceptance’ (t(36) = -.008, p = .993) were not

found to provide a statistically significant contribution to the prediction of IBDQ-S scores.

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With regards to the variable coefficients (B), for every increase of one point on the

patient identity scale, IBDQ-Stoma scores fall by 25.729 (B = -25.729) for every increase of

one point on the person identity scale, IBDQ-Stoma scores raise by 5.296 (B = 5.296), for

every increase of one point on the expectations scale, IBDQ-Stoma scores raise by 6.631 (B =

6.631), while for every increase of one point on the acceptance scale, IBDQ-Stoma scores

were found to actually fall but by a mere .067 (B = -.067) which is a reflection of its extreme

lack of significance as demonstrated by its p value of .993.

3.4.8 Adaptation formula

Based on the above regression models, going forward adaptation will therefore be

measured both in those with and without stomas using the formula of: person identity +

acceptance + expectations -patient identity.

3.4.9 Does the A-IBD predict QoL over and above the BIPQ?

Non-stoma group

Table 6 below displays the multiple regression analysis results when the four

subscales of the A-IBD were added to the regression model predicting IBDQ scores (Model

2) compared to when the eight items of the BIPQ predicted IBDQ alone (Model 1).

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Table 6: A-IBD and BIPQ predicting IBDQ scores

Model R R2 Adj. R2 R2 change F Sig.

1 .760 .578 .565 .578 44.024 .0001

2 .803 .645 .628 .066 38.236 .0001

What these results show is that the BIPQ alone is statistically significantly better at

predicting IBDQ scores than the mean model, showing a strong correlation between the two

sets of scores (R=.760), that it accounts for 57.8% of the variance in IBDQ scores (R2 =.578)

and demonstrates a medium effect size (Adjusted R2 =.565). When the A-IBD was added to

the regression model, it was found the model was still highly significant and its four

subscales predicted a further 6.6% of the variance in IBDQ scores.

Stoma group

Table 7 below displays the multiple regression analysis results when the four

subscales of the A-IBD were added to the regression model predicting IBDQ-S scores

(Model 2) compared to when the eight items of the BIPQ predicted IBDQ-S alone (Model 1).

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Table 7: A-IBD and BIPQ predicting IBDQ-S scores

Model R R2 Adj. R2 R2 change F Sig.

1 .771 .595 .494 .595 5.881 .0001

2 .804 .646 .494 .051 4.253 .001

What these results show is that the BIPQ alone again was statistically significantly

better at predicting IBDQ-S scores than the mean model, showing again a strong correlation

between the two sets of scores (.771), that it accounts for 59.5% of the variance in IBDQ-S

scores and demonstrates once again a medium effect size. When the A-IBD was added to the

regression model, it was found the model was still highly significant and its four subscales

predicted a further 5.1% of the variance in IBDQ-S scores.

3.5 Discussion

3.5.1 Summary of findings

Research indicates that IBD impacts upon patients’ daily lives in a multitude of ways

and that adaptation to this condition is core if people are to manage their condition

effectively. To date, however, although much has been written about adaptation to chronic

illnesses in general, and in particular IBD, what this construct means and how it should be

measured remains unclear. The aim of the present study was therefore to provide a clear

conceptualisation of adaptation in the context of IBD as a means to operationalise this

construct and develop a reliable measure. Conceptualisation was based upon the chronic

illness literature and specifically a qualitative study of 20 IBD patients reported in Study 1

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(Taylor et al, 1983; Leventhal et al, 1980; Moss-Morris, 2013; Matini & Ogden, 2015). From

this, adaptation was conceptualised as reflecting a balance between the identity as a person

and that of a patient resulting in a degree of equilibrium which was achieved through a degree

of acceptance and positive expectations about the future. Subsequently this conceptualisation

was operationalised using 40 items based upon prior qualitative work to reflect this

definition. Psychometric testing then produced a solution with four factors reflecting patient

identity, person identity, acceptance and expectations which were shown to have a robust

factor structure and mostly good internal consistency as measured by the Cronbach’s alphas

and corrected item-total correlations of the factors, with the acceptance subscale

demonstrating slightly poorer internal reliability than the other three subscales. Association

with existing measures was then assessed through correlations with measures of sense

making (the brief IPQ) and quality of life (the IBDQ) indicating weak to moderate correlation

strengths suggesting that whilst adaptation is associated with sense making and quality of life

in IBD it is not synonymous and therefore measuring something unique.

The present study also explored the relationship between the process of adaptation

and illness outcomes. Specifically, the aim of the study was to investigate whether adaptation,

as conceptualised in Matini and Ogden (2015) and then operationalised by the A-IBD, could

predict the outcome of QoL in patients with IBD, as measured by the IBDQ/IBDQ-S. With

regards to those patients without stomas, it was found that A-IBD scores significantly

predicted QoL scores, with the four factors of the A-IBD accounting for 45.0% of the

variance in IBDQ scores, as well as demonstrating a moderate effect size as evidenced by an

adjusted R2 of .441. Assessing the factors of the A-IBD independently, it was found that both

patient identity and person identity scores significantly contributed to IBDQ scores, with

coefficients of 17.140 and -19.494, respectively. Acceptance and expectations meanwhile

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were not found to significantly contribute to IBDQ scores, with coefficients of 3.214 and

4.066, respectively.

With regards to those patients with stomas, it was found that A-IBD scores again

significantly predicted QoL scores, with the four factors of the A-IBD accounting for 52.0%

of the variance in IBDQ-S scores, as well as a medium effect size as evidenced by an

adjusted R2 of .467. Assessing the factors of the A-IBD independently, in this case it was

found that only patient identity was found to significantly contribute to IBDQ-S scores, with

a coefficient of -25.729. Accordingly, person identity, acceptance and expectations were not

found to significantly contribute to IBDQ-S scores, with coefficients of 5.296, -.067 and

6.631, respectively.

When assessing to what degree, if at all, the A-IBD could predict IBDQ/S scores over

and above BIPQ scores, it was found that the A-IBD scores helped explain a further 6.6% and

5.1% of the variance in IBDQ/S scores, respectively, than BIPQ scores alone.

3.5.2 Links to literature

Where the previous study conceptualised the notion of adaptation (Matini & Ogden,

2015), the current study now operationalised the concept so as to make it measurable. In

doing so, the findings from the current study which highlight the factors that constitute

adaptation help to bridge the gap between the issue of the myriad of complex challenges that

patients with IBD face, as outlined in Devlen et al.'s (2014) conceptual model of the impacts

of IBD, with a solution as to how patients overcome these challenges. Up to this point, we

largely understood the problems that IBD poses but little on how exactly patients evolve in

light of these problems.

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While the conceptualisation and operationalisation of adaptation to IBD that has been

developed thus far differs, in some cases quite significantly, to other theorised

conceptualisations of the construct in the IBD literature, it also finds a degree reflection in

most of the thus far postulated conceptualisations. For example, Olbrisch and Ziegler's (1982)

suggestion that disease-related adjustment in IBD was associated with patients' general level

of self-esteem and social competence is particularly demarcated from its composition as

proposed by the current study (and that of the previous chapter). However, Maunder and

Esplen's (1999) and Voth and Sirois' (2009) propositions of 'adjustment' to IBD do share

some similarities. In the former it was posited that adjustment was associated with illness

uncertainty, loss and change, and suffering. Indeed, the conceptualisation of adaptation in the

previous chapter, which then gave rise to the measure in this chapter, argued that patients

seek to balance their patient identity with their person identity (two of the factors found to be

associated with adaptation after the above factor analysis) in order to attempt to overcome the

uncertainty that is inherent when living with the illness. Meanwhile, while in the latter poor

adaptation was suggested to be largely attributed to self-blame, a factor that did not arise in

the current study, it was also purported to be related to increased avoidant coping. Despite

this thesis focusing on identity in the form of the patient identity and the person identity,

these facets of illness identity are undoubtedly associated with certain instances of coping.

For example, it is arguable that a patient scoring low on the person identity scale and thus not

exerting themselves, not socialising, being hyper-vigilant with regards to their fatigue, and so

forth, will demonstrate instances of behaviour that are typically associated with as emotion-

focused or avoidant coping, and it is also probably likely that these behaviours will be

predictive of poor adaptation as Voth and Sirois (2009) found.

The results of the current study also support some other well-established findings in

the chronic illness literature, primarily the finding that acceptance is a useful predictor of

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QoL. While the current study found that it did not significantly contribute independently to

QoL, as measured by the IBDQ, neither in those with stomas nor those without, when

combined with the other factors as part of the overarching regression model, it aided in

significantly predicting QoL. Its justification as an important factor despite its non-significant

individual contribution is supported by research into the importance of acceptance on QoL in

research on patients from multiple illness groups including those suffering from haemophilia-

related joint pain (Elander et al., 2013), cancer (Heydarnejad et al., 2011), diabetes (Lewko et

al., 2007) and multiple sclerosis (Van Damme et al., 2016). Meanwhile, despite expectations

again being non-significant in predicting both IBDQ and IBDQ-S scores, its inclusion as part

of an overall significant model of adaptation that predicts QoL reflects the notion of 'positive

illusions' from Taylor's Cognitive Adaptation Theory (Taylor, 1983) in being a critical part of

adaptation. Finally, although the concept of identity and its relationship with adaptation has

garnered the least attention in the literature of the emergent factors of the A-IBD, it has

indeed been alluded to as a crucial part of the patient experience in chronic illness. For

example, Moss-Morris' (2013) working model of adjustment to chronic illness mentions the

potential for IBD to interfere with patients' identity or life roles which contributes to a

disrupted emotional equilibrium and subsequently impaired QoL.

3.5.3 In summary

Overall, the current study attempts to build on the previous study's conceptualisation

of adaptation to IBD by operationalising the construct. As a result, thus far we have advanced

the IBD literature, and arguably the wider chronic illness literature, to the point where we not

only have an understanding of what constitutes adaptation to IBD which was previously very

poorly conceptualised, but also can now begin to quantify these patients' level of adaptation

to their illness.

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Further to this, the current study builds on the story of this thesis by justifying the

importance of understanding the process of adaptation to chronic illness, and specifically to

IBD in this case. This justification is supported by this study's finding that it has some utility

in predicting illness outcomes in IBD, with the current study focusing on the outcome of QoL

as measured by the IBDQ. However, the narrative thus far, as established by Matini and

Ogden (2015) is that adaptation to IBD has been conceptualised and operationalised as a

balance between the person and patient identity along with acceptance and expectations,

whereas the results from the present study alter this conceptualisation slightly. Whereas thus

far it has been advocated that there should be equilibrium between the patient and person

identities in order to achieve good adaptation, the findings outlined above indicate that in fact

a positive, linear relationship between person identity and QoL and a negative, linear

relationship between patient identity and QoL exists. As such, while our original

conceptualisation of adaptation to IBD constituted a search for the 'new normal' by

counterbalancing one's patient identity with one's person identity, rather it appears that we

should simply encourage the person identity and inhibit the patient identity, and it is perhaps

this encouragement of the person identity that helps restore equilibrium to the lives of those

impact by IBD.

Now that we have better ascertained what constitutes adaptation in IBD, how to

measure it, and that it is a worthwhile paradigm by which to go about improving QoL in this

illness group, the aim of this thesis will now be to answer the question of how patients reach

a point of being adapted or maladapted. By investigating this, we should gain an

understanding of what patients feel enables them to score high for those well adapted, and

what prevents them from scoring higher for those less well adapted. Ultimately, it is hoped

that these enabling or preventing factors are amenable to change, with a view to subsequent

interventions that can target these factors and resultantly improve QoL.

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3.5.4 Methodological limitations

In terms of limitations of the study, it is arguable that our results are a product of both

the recruitment method used (online support groups) and the large bias of UK participants.

With regards to the former, the external validity of the A-IBD may be put under scrutiny

since the sample of participants may not be representative of the wider IBD population.

Meanwhile, with regards to the latter, of the 307 who were included in the final data analysis,

154 classified themselves as White British which again brings into the question the

representativeness of the A-IBD with the wider IBD population. In addition, female

participant representation (83.1%) far outweighed male participant representation (16.9%).

The fact that the previous study was also represented mainly by female participants (14

females compared to nine males, i.e. 63.6% compared to 36.4%, respectively) somewhat

allays concerns regarding the internal reliability of the measure since it was both formed

(Chapter 2) and responded to (Chapter 3) by a predominantly female sample of patients.

However, this gender bias does potentially raise concerns over the external validity of our

findings regarding adaptation to IBD since it was conceptualised and operationalised on a

largely female sample and thus may not be representative of the male IBD population. In this

case, the concerns are again somewhat diminished by the findings of a female bias in

autoimmune disease susceptibility in general (Ngo et al., 2014) as well as IBD prevalence

statistics (Betteridge et al., 2013, Dahlhamer et al., 2016). It should be noted though that this

female bias in IBD prevalence is typically a characteristic of Western IBD patients, again

raising issues regarding the findings' representativeness as was highlighted above by the

acknowledgement of a generally UK based sample. Another issue worth raising is that

participants' diagnoses were self-reported and thus our results and conclusions are reliant on

participants accurately and truthfully reporting this information.

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Perhaps the most obviously questionable aspect to the methodology of the current

study though was that the non-stoma group, which completed the IBDQ, far outnumbered the

stoma group, which completed the IBDQ-S (by 266 participants to 41). However, this bias

towards the non-stoma group was somewhat alleviated by both the data screening process

and the subsequent regression results themselves. With regards to the former, multiple steps

were taken to ensure the group met all the statistical assumptions necessary to carry out a

multiple regression such as ensuring a sufficient sample size and assessing homoscedasticity

and multicollinearity. Furthermore, while the results of the stoma group did differ from the

non-stoma group in that person identity was not a significant contributor to IBDQ scores in

the stoma group whereas it was in the non-stoma group, the remainder of the results were

very similar, with patient identity being a significant contributor to IBDQ/IBDQ-S scores but

not acceptance or expectations. As such, the combination of the data screening procedures

and the similarity of the results should ameliorate any concerns regarding the disparity in size

between the two sub groups.

Another potential flaw of the study is that while the study establishes that A-IBD

scores were significantly predictive of IBDQ/IBDQ-S scores, with both regression models

demonstrating medium effect sizes, these effect sizes are merely representative of

correlations and thus do not necessarily indicate causation.

Furthermore, the adaptation formula that was decided upon based on the A-IBD and

IBDQ/S regression models may be limited somewhat. First of all, only patient identity was a

statistically significant contributor to the prediction of both IBDQ and IBDQ-S scores. Also,

when predicting IBDQ-S scores, acceptance had virtually no impact. However, in both

instances when all four subscales were included the regression model was highly significant

and thus all subscales were retained. It should be noted though that perhaps the mechanisms

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of adaptation are marginally different in those patients with IBD who have a stoma and this

warrants further investigation.

Finally, it could be argued that a 5-6% improvement in the prediction of IBDQ/S

scores does not represent a significant improvement over merely using the BIPQ. However, it

should be noted that, firstly, the BIPQ contained four more variables than the A-IBD and an

increased number of independent variables tends to increase the percentage of variance of the

dependent variable that is predicted. Secondly, while statistically perhaps this improvement is

small, it is ultimately the impact on patient wellbeing that is important and according to this

analysis, the A-IBD may help us improve our understanding on how to predict QoL and thus

improve it.

Finally, the current study did not carry out all stages typically involved with

questionnaire validation, as outlined at the beginning of the chapter. For example, it is

typically good practice to involve practice in questionnaire development to involve the

intended end users, in this case the patients with IBD, and seek their views on item selection,

item reduction, and opinions on face validity of the final measure. In addition, there was no

involvement of IBD clinical experts in either item selection or item reduction which would

provide feedback as to the content validity of the measure. The involvement of both could

have given some insight into whether such a measure could be potentially beneficial based on

any prior experience undergoing psychological intervention for the former, and

administrating psychological interventions for the latter. However, repeated engagement with

a patient pool of the magnitude of the one involved in this study as well as collaborating with

IBD clinical experts far exceeded the scope of this thesis. While foregoing these methods of

measure validation do raise some doubts as to the efficacy of the measure, carrying out these

steps would have likely been too time consuming to be pragmatic in the context of this thesis.

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3.5.5 Conclusion

To conclude, this study presents a new 18 item scale to measure adaptation in those with IBD

- the A-IBD - which shows mostly good reliability. This study also study provides support for

the A-IBD as measuring something distinct from measures of sense making and QoL, as well

as providing support for the A-IBD as an effective means of predicting QoL in patients with

IBD based on their degree of adaptation to their illness. A qualitative study will now be

carried out in Chapter 4 in order to understand the factors that patients feel encourage or

inhibit their adaptation to IBD so as to guide therapeutic interventions in IBD towards the

goal of being well adapted.

Chapter Four

Study 3: Patients' explanations for their degree of adaptation: a qualitative

study with a quantitative component

4.1 Overview

The previous chapter sought to assess, firstly, the degree to which the new measure of

adaptation to IBD (the A-IBD) was associated with existing measures of sense making (the

Brief IPQ) and health outcomes (the IBDQ). The chapter also assessed the ability of the A-

IBD to predict QoL over and above the predictive ability of the BIPQ. The results indicated

that the A-IBD did indeed measure something unique compared to the BIPQ and IBDQ and

that the A-IBD predicted a further 6.6% and 5.1% of the variance in IBDQ and IBDQ-S

scores, respectively, than the BIPQ alone. These results suggested that the A-IBD has utility

in measuring adaptation and that a state of high adaptation is indeed beneficial in terms of

QoL and therefore to be aimed for if possible.

This next chapter will therefore explore the underlying factors that contribute to high

and low adaptation as measured by the A-IBD. This will be achieved by interviewing a

sample of those patients with IBD who were positioned in the top and bottom 25% of scorers

on the A-IBD from Study 3 (Chapter 4), to explore the reasoning behind their prior responses

with regards to the factors they felt promoted or inhibited their adaptation. This chapter will

also explore the notion of whether adaptation should be regarded as either a state or trait

based on the degree of variation in participants' A-IBD scores between Study 2 (Chapter 3,

T1) and the current study (T2).

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4.2 Introduction

The process of adaptation to chronic illness has garnered little attention in the chronic

illness literature to date. In its place, much work has been done on underlying psychological

processes such as research into theories of coping (Lazarus & Folkman, 1984; Moos &

Schaefer, 1984) and sense making in the form of Taylor's Cognitive Adaptation Theory

(Taylor, 1983) and Leventhal et al.'s (1984) Self-Regulatory Model. While these frameworks

have proven their utility in predicting health outcomes across a number of illness groups such

as those suffering from hypertension (Meyer et al., 1985), Chronic Fatigue Syndrome (Moss-

Morris et al., 1996) and cancer (Czajkowska et al., 2013; Tomich & Helgeson, 2006), they

fail to account for the lived, biopsychosocial experience that is characteristic of chronic

illness.

Due to the complex physical, social and emotional factors associated with living with

IBD (Gearry et al., 2006; Czuber-Dochan et al., 2013; Vidal et al., 2008) along with the fact

that the disease is characterised by an unclear aetiology (Fiocchi, 1998) and a limited,

potentially dangerous treatment protocol (Stallmach et al., 2010), understanding adaptation to

IBD is particularly important and yet thus far lacking. While more recent research such as

that of Moss-Morris's (2013) working model of adjustment to chronic illness has built on the

aforementioned frameworks in that it attempts to bring together the aforementioned

psychological processes together with emotional and behavioural factors, the concept of

adaptation has remained poorly conceptualised in terms of how this framework applies to

specific illness groups.

Through Studies 1 and 2 of the current thesis, this gap in the literature has now been

addressed with both the conceptualisation of IBD and its subsequent operationalisation in a

new measure of adaptation focusing on the experience of the patients with a particular focus

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on the notions of patient identity, person identity, expectations and acceptance. At this point,

however, the question remained as to whether this understanding and operationalisation of

the process of adaptation could provide utility in its ability to predict health outcomes in the

form of a subjective, IBD-specific measure of IBD - the Inflammatory Bowel Disease

Questionnaire (IBDQ; Guyatt et al., 1989). Through the analysis carried out in Study 3

(Chapter 4), we are able to confirm that not only does the A-IBD sufficiently predict

subsequent patient HRQoL, but is also a construct that is distinct from both illness

representations, as measured by the Brief Illness Perceptions Questionnaire (BIPQ), as well

as QoL itself as measured by the IBDQ, and is thus not synonymous with either of these

constructs.

With an understanding of what constitutes adaptation to IBD, the focus now moves to

gaining an understanding of the contextual antecedents of those that present as adapted or

maladapted. With the development of this knowledge, it is hoped that future interventions

aimed at improving patients' degree of adaptation to their illness will be targeted at the

appropriate factors that engender this adaptation. To date, psychological interventions aimed

at treating IBD through the application of a range of strategies including psychotherapy,

counselling, and cognitive behavioural therapy have all proven to lack in long-term efficacy

with regards to their effect on QoL, (Timmer et al., 2011; Smith et al., 2002; Mikocka-Walus

et al., 2016). However, upon successful identification of the antecedents of adaptation, ideally

we should observe an improvement in the efficacy of future interventions that target these

specific factors. In line with this ultimate goal, the primary aim of the current study therefore

was to identify those factors that patients themselves feel promote or inhibit their level of

adaptation to their illness. Specifically, this study will focus on those patients who previously

presented as being either particularly high or low in adaptation from Study 2 (Chapter 3).

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How adaptation scores are determined as high or low for the current study will be explained

in the following section.

Adaptation is largely agreed upon in the chronic illness literature as a dynamic

concept, continuously evolving and unpredictable and dependent upon a myriad of

intrapersonal (biopsychological), interpersonal (sociocultural) and extrapersonal

(environmental) factors (Linveh, 2001). So far however, this thesis has only used a cross

sectional design and has therefore only measured adaptation at a single time point. The

second aim of this study was therefore to explore the extent to which adaptation to IBD, as

measured by the A-IBD, changes over time and can therefore be considered either a stable

trait or a more dynamic state. In line with this, a sub sample of participants from Study 2

were followed up in the current study between 10 and 16 months after their baseline measure

and their adaptation measured for a second time to assess any degree of change.

4.3 Method

4.3.1 Design

A qualitative and quantitative design was used with in-depth, semi-structured

interviews and a repeat assessment of the A-IBD.

4.3.2 Sample

Participants for this study were recruited by identifying those scoring in the top and

bottom 25% of scorers on the A-IBD from Study 2 (Chapter 3). In line with the criteria for

participant recruitment in this prior study, participants were required to be at least 16 years of

age and capable of providing informed consent. However, only those participants living in

the UK were invited to take part in the current interview study. 16 participants were recruited

upon which point saturation was reached: High adaptation (n = 8; six females, mean age =

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33.0 years, range = 23-47 years; two males, mean age = 33.0 years, range = 24-42 years;

mean time since diagnosis = 100 months/8 years), low adaptation (n = 8; six females, mean

age = 41.0 years, range = 24-57 years; two males, mean age = 30.0 years, range = 24-36

years; mean time since diagnosis = 145 months/12 years). All participants were given a

pseudonym to ensure anonymity. Participant demographics are presented in Table 8 below.

4.3.3 Classifying degree of adaptation

Participants were selected for the current study based on their responses to the A-IBD

in Study 2 (Chapter 3). Those scoring in the bottom 25% of scorers (up to and including an

A-IBD score of 4.92) were classified as low adapters and those scoring in the top 25% of

scorers (including and above an A-IBD score of 7.30) were classified as high adapters.

4.3.4 Change in adaptation

Participants' adaptation scores, according to the A-IBD, from the current study (T2)

were compared to their initial A-IBD scores from Study 2 (Chapter 3, T1) to assess whether

adaptation to IBD was a state or trait. Accordingly, Table 8 below states each participants' T1

and T2 A-IBD scores, classified as showing 'no change' if T2 scores were within ±1 of T1

scores, as 'improved' if T2 scores were ≥1 greater than T1 scores and as 'deteriorated' if T2

scores were ≥1 lower than T1 scores. Based on this criteria, it can be seen that six participants

showed no change in adaptation, three participants improved and six participants

deteriorated.

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Table 8: Participant demographics

Pseudonym Sex Age (years)

Diagnosis Time since diagnosis (months)

A-IBD score T1

A-IBD score T2

Change in adaptation (T1/T2)

Brian M 24 UC 74 9.57 7.61 Deteriorated

Rhian F 24 CD 59 4.65 6.95 Improved

Elaine F 23 CD 52 9.17 4.20 Deteriorated

Zara F 24 UC 44 10.83 7.50 Deteriorated

Bob M 24 UC 69 4.23 5.13 No change

Janet F 36 CD 100 9.28 7.20 Deteriorated

Jason M 42 CD 297 9.28 9.86 No change

Daniel M 36 CD 130 4.10 9.03 Improved

Stephanie F 40 CD 292 3.73 4.94 Improved

Joanna F 44 UC 46 8.35 6.53 Deteriorated

Jackie F 47 CD 112 8.88 9.15 No change

Katie F 45 CD 376 4.00 3.40 No change

Sharon F 57 CD 53 3.83 3.45 No change

Philippa F 24 CD 71 9.13 6.84 Deteriorated

Sarah F 52 CD 107 4.48 4.10 No change

Diane F 28 UC 70 4.85 5.20 No change

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4.3.5 Procedure

Participants were followed up between 10 and 16 months from the time of the first

interview (Study 2, Chapter 3). Participants from the top and bottom 25% of scorers on the

A-IBD at baseline and living in the UK were e-mailed to inform them of their status as a

participant of interest for the current study. All interviews were conducted in English,

following a semi-structured interview schedule (See Appendix M) over the telephone at a

mutually convenient time and were all carried out, audio taped, transcribed verbatim by the

principal investigator and then stored securely on the University servers according to the Data

Protection Act 1998. Telephone interviews were preferred to face to face interviews due

primarily to pragmatism since it would allow for participants from all over the UK to

participate, as well as allowing participants to share their opinions in a relatively anonymous

fashion. Interviews lasted on average between 30 to 45 minutes and took place over the

course of three weeks in August 2016. Once the interviews had been conducted, participants

were granted the opportunity to ask questions they had regarding their participation or to

reflect on their experience. All participants were given a verbal debriefing to explain the

nature of the study they had been involved in. Ethical approval was obtained from the

University Ethics Committee (See Appendix N)

4.3.6 Interview Schedule

The same interview schedule was used for both the CD and UC participants. The first

section of the interview covered briefly the participants' history with IBD (When they were

diagnosed; was the diagnosis a lengthy process), followed by a discussion of the major

difficulties the participants had faced emotionally, psychologically and behaviourally with

regards to their illness. Once a rapport had been established, participants were then

interviewed regarding the answers they had given to the A-IBD from Study 2 (Chapter 3)

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based on the four subscales of the measure (patient identity, person identity, acceptance and

expectations). Questions revolved around what factors the participants felt contributed to

their scores on each of the subscales. The interview schedule was piloted with two patients

with IBD prior to the study.

4.3.7 Data Analysis

As was the case with Study 1 (Chapter 2), the interviews were analysed using

thematic analysis. Within this analytical framework, an inductive, 'bottom-up', approach was

taken as our analysis was not based on any previous research into aspects that contribute to

adaptation, rather we sought to generate phenomenological data from which our themes could

be developed. Furthermore, an essentialist theoretical perspective was chosen as our focus

was on the experiences, meanings and reality of the participants. The interview transcriptions

were each read through twice in order to become familiar with the data. Salient information

that related to the lived experience of IBD was then coded and collated and sorted into a

number of prospective themes that seemed to represent the data. Themes and subthemes were

adjusted to include only those that could be supported by illustrative quotes from the

interviews.

4.4 Results

Upon reviewing and discussing the participants' results from the A-IBD, differences

could be seen between the high and low adapters with regards to three core themes, namely

their level of 'engagement', 'resilience' and certain 'contingencies'. These themes will now be

elaborated on with the use of illustrative quotes and are outlined below in Table 9.

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Table 9: Themes and subthemes of thematic analysis

Themes Sub-themes

1. Engagement i. Fulfilment

ii. Honesty

iii. Openness

2. Resilience i. Minimising

ii. Reframing negativity

iii. Realising unconstructive cognitions

3. Contingencies i. Disease factors

ii. Social factors

Theme 1: Engagement

The first significant way by which participants who scored highly on the A-IBD

differed from those who scored at the lower end of the scale was in terms of their propensity

to engage more in three specific areas of their day to day life. These participants

demonstrated more willingness to engage in activities and hobbies they enjoyed or even

loved so as to gain a sense of 'fulfilment', 'honesty' in terms of their own assessment of their

levels of perceived fatigue and whether they could push through this barrier of fatigue, and

'openness' when it came to communicating the current situation of their illness with others

and sharing their disease experiences with the wider community.

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Subtheme 1: Fulfilment

Almost every participant in the high adaptation group spoke of their desire to simply

do things they enjoyed in spite of their illness. For some these activities also served the

purpose of distracting themselves from their illness and preventing possible rumination and

complacency as one participant described who had rediscovered the importance of playing

music in her life:

"It was actually after the diagnosis I thought you know what I need to start doing this

again, and that probably helped, it kind of made me go back and start playing and that gave

me that focus and I could get away from sitting there" (Janet, 36, CD)

For others the notion of fulfilment served as a protective factor against compromising

one's identity:

"I think it’s really important to let people realise that the thing that they enjoyed when

they weren’t feeling ill, so whether that’s looking at some nice countryside or playing with

the dog or watching their favourite actor in a film on TV or whatever, they can still enjoy

even if their guts are giving them an absolutely horrible time, it hasn’t fundamentally

changed you as a person" (Joanna, 44, UC)

Finally, one participant whose adaptation score rose significantly between the initial

and follow up A-IBD assessment demonstrated perhaps the key difference between higher

and lower scorers in terms of this domain of adaptation: the importance on seeking fulfilment

in the face of fear from potential disease repercussions, be they symptoms or injury to areas

on the patient's body that had been operated on due to their illness:

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"I could just sit there and not try, I could try and fail, but just sort of thinking well try

it and if you fail fair enough but try it, so like I started kickboxing, I started that last week,

and so lots of people were like oh kickboxing but what about your stoma and that and I think

well yes that plays a part in my thought process but let’s see how I go first" (Daniel, 36, CD)

In contrast, Elaine, whose adaptation score significantly fell from high to low was

seemingly increasingly concerned with returning to her hobbies of football and martial arts

for fear of worsening her symptoms. Crucially, she admitted that what was preventing her

from engaging in these activities was likely mental in nature than physical:

"I used to do a lot football, I used to do a lot of martial arts before I got

diagnosed...I’m just too scared to do them...it would probably be alright after a certain

amount of time but mentally I just can’t do it... I don’t wanna make it worse, I just don’t

wanna make myself even iller than I already am" (Elaine, 23, CD)

Other examples of this type of lack of engagement from low scorers was

demonstrated by one participant who, despite on one hand having previously described her

inability to get out the house had also talked about how she was indeed successful in

venturing out the house and being active with the assistance of a psychologist at a previous

point in time, but had now reverted to limiting herself to sedentary hobbies at home again:

"My hobbies are sedentary which is knitting, reading and playing games. I used to

love cycling but I mean I haven’t been able to do that for years, so in that case I don’t "

(Sharon, 57, CD)

Crucially, this was by the participant's own admission linked, as with the previous

participant, to psychological reasons than to any current bout of disease activity:

"No my illness hasn’t got worse, I think my feelings about it have" (Sharon, 57, CD)

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Subtheme 2: Honesty

Fatigue was perhaps the most common complaint among all participants interviewed.

However, participants scoring high in adaptation demonstrated a distinct ability to honestly

analyse their fatigue and determine when they were pushing their boundaries to the point that

their exertion would become detrimental to their illness:

"That’s something that only really you can work out, that’s something that a doctor

won’t be able to tell you how to do and research probably won’t be able to accurately indicate

for every individual how to do it, it’s something you need to learn for yourself...it’s just about

learning the very subtle difference between normal fatigue and like a flare up induced

fatigue...if I gave into fatigue every single time then I would end up housebound again, but on

the other side of the coin, if I pushed through all of the fatigue I feel then I would make

myself ill more often, so there is a balance there " (Brian, 24, UC)

Similarly, one participant demonstrated this honesty with regards to attributing how

much of his fatigue was likely due to reasons other than his disease:

"I am the run ragged father of a 10 year old and a 7 year old and I've got a pretty big

job here...I’m a bit fatigued, the attributableness of that fatigue I have got no idea, 3% of it

may be down to the fact that I have a chronic inflammatory disease, 97% of it is I’ve got two

kids, so yes I’m tired but I really don’t think very much of it is to do with the fact I’m

unwell" (Jason, 42, CD)

Once again, Daniel's metamorphosis from low adaptation to high adaptation was

reflected in his ability to challenge his fatigue and come to the realisation that pushing one's

perceived limits in terms of fatigue can provide positive reinforcement:

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"This week’s session was a lot more full on and yeah I didn’t come out thinking oh

my God I’m exhausted if anything I came out feeling slightly more energised thinking I

wanna do more I wanna do something else now...I think it may be partly because you stop

yourself doing anything because you’re so ill so you forget what that feeling is like when you

do some form of exercise" (Daniel, 36, CD)

On the other hand, participants scoring low in adaptation tended to demonstrate a

sense of helplessness and resignation to their fatigue as opposed to an honesty as to their

ability to challenge it, as evidenced succinctly by one participant in particular:

"I just think that it’s just one of them things, I mean with Crohn’s one of the

symptoms is fatigue and I’ve just got to put up with it really" (Katie, 45, CD)

This same participant then went on to characterise the negative reaction to fatigue

following exertion that was common of low adaptation scorers:

"I can get up sometimes really early and the next day it’ll kill me, it’s like I’ve been

walking recently and I mean I’ve been aching now for a couple of days" (Katie, 45, CD)

Subtheme 3: Openness

The final way that participants scoring highly on the A-IBD differed to those who

score lower in terms of their degree of engagement was with regards to their tendency to be

more open about their illness. The ways in which this openness was displayed varied, with

one participant explaining how it was important to her to be transparent with friends when

her illness intervenes with plans:

"I am (open) but only if it needs to be stated I think, if something’s happening and I

have to back track or back out or change plans I wouldn’t just do it and leave people

wondering, I would explain nicely" (Jackie, 47, CD)

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This openness was also shown to be valuable in the workplace, with one participant

describing that, despite her initial anxiety at being negatively perceived for announcing her

illness to her boss, a positive outcome occurred as a result of her disclosure during a

particularly bad period of disease activity:

"He was very good and sort of said well you know look after yourself, if you need to

work from home that’s fine let me know how you’re doing, and he’s not really said anything

about it since but I don’t worry that he’s sort of thinking oh my god have I employed this

person who’s just gonna be a malingerer or have a lot of time off sick or whatever" (Joanna,

44, UC)

Most striking though was the willingness of some of the participants scoring high in

adaptation to be open about their illness with the general public and the positive outcomes

this engagement had on their perspective on life with IBD. For one participant this

opportunity arose from writing a book about his experiences with his illness:

"It was when I sort of published my book and people realised the extent of the illness

a lot of people got in touch and sort of started sharing their own stories, and it was people I’d

never expect sort of people from school who were saying they had confidence issues and they

had to take antidepressants and things...you start to realise that really we all have weaknesses

within ourselves that we all have to deal with and that just makes it easier to accept" (Brian,

24, UC)

Meanwhile, one participant scoring at the lower end of the A-IBD spoke of how she

struggled to reconcile the fact that she understood keeping her friends and others "at arm's

length" was counter-productive with the fact that at the same time these other people, in her

opinion, could never fully understand what she was going through with the illness due to its

'invisible' nature:

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"Obviously I know I keep people at bay and at arm’s length so I know I need to

change that or I’d like to, but then from their point of view it is often referred to as an

invisible disease so obviously when I go out they’re only seeing me when I’m feeling OK and

with loads of makeup and everything so they don’t really believe that there’s anything

wrong" (Stephanie, 40, CD)

Differences in the levels to which those demonstrating high and low adaptation

engaged in all aspects of their life, despite the burdens placed on them by their illness, was

therefore described in a number of ways. Throughout the accounts, these differences revolved

around the degree to which the highly adapted participants more often sought fulfilment in

their lives by continuing to engage with their passions, by being honest with their fatigue and

continuing to engage when they deemed it sensible and not detrimental to their ongoing

wellbeing, and by being open with friends and family as to their limitations and sharing their

experiences with others.

Theme 2: Resilience

Another stark difference was also observed in the way in which participants who

scored highly on the A-IBD demonstrated a seemingly greater ability to psychologically and

emotionally respond to the often daily challenges that IBD posed. This was exhibited by the

high scorers in three main ways, namely through 'minimising', 'reframing negativity' and

'realising unconstructive cognitions'.

Subtheme 1: Minimising

One way in which the high scorers demonstrated this level of psychological and

emotional control was by minimising. For example, for one participant, evidence of this

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ability came to the fore when they sat out a boat trip for the day while on a family holiday

due a lack of toilet access which carried with it the potential for negative affect:

"That wasn’t heart breaking, that wasn’t “Oh it’s not fair”, I didn’t think or feel any of

those things, it’s just they couldn’t find a boat that had a loo so I said in that case I’m gonna

have to be out I’m afraid, but that’s fine you go off and you have a great time" (Jackie, 47,

CD)

For another participant this ability to minimise was evident when they described how

they had felt temporarily disheartened by a flare up of their illness and the associated fatigue.

Crucially though they were able to rationalise the symptoms as part of the ambiguous nature

of the disease despite their best attempts at preventing disease recurrence:

"I've had really good compliance with my meds, I have been working quite hard but I

haven't been really running myself into the ground, I didn't expect to get a bit ill again and so

that has brought it back into focus for me, and it's just kind of from time to you are going to

feel fatigue and you carry on as much as you can but you can't deny that it's going to happen"

(Joanna, 44, UC)

One participant extended this notion of minimising to both his positive achievements

in life as well as his negative experiences with the disease, a philosophical mindset that

appeared to help him better deal with symptoms such as pain:

"There's this famous phrase about 'this too shall pass'. I've got it on every notebook I

have at work...it's a two way thing right, all of those triumphs well they're going to go away

at some point and be meaningless at the end of it, but it's also true for pain, eventually you

will come to an accommodation with it so this too shall pass" (Jason, 42, CD)

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In contrast to the above responses, one participant from the low scorers clearly found

it far more difficult to come to terms with the fact that sometimes the disease would flare up

without a logical cause for doing so despite being on medication, thus feeling there was no

hope for the future:

"It feels hopeless because at the moment there is no cure and there is no medication

that helps stop...like I'm on Asacol which is to help stop the flares but it doesn't actually

completely stop them, if I eat the wrong thing or just my body decides to have one I'll just

have a flare, sometimes I can't even find a reason why I'm having one" (Sharon, 57, CD)

This same participant then also demonstrated the difficulties that her and other low

scorers often showed with regards to facing failures during their disease experience and how

that cycle of negative reinforcement was difficult to break out of:

"I need to lose weight and then every time I lose it I seem to get ill and then put it all

back on again so it never happens and it just does feel like this is it, this is what I've got for

the rest of my life however long or short it may be" (Sharon, 57, CD)

Subtheme 2: Reframing

A sizeable number of the participants also alluded to an ability to reframe potential

negativity that may come about from living with IBD. Occasionally these allusions were

associated with dealing with the physical aspects of life with the illness but more often

participants spoke on a more metaphysical and philosophical level about living life with IBD

and how they could rationalise and find positives from their experience. To highlight an

example of the former, when one participant was confronted on the prospect of further IBD-

related surgery in their future she described how she would welcome the often-feared idea of

living with a stoma since it would ultimately improve her health:

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"These days I can be quite flippant and say if they took me in tomorrow and gave me

a colostomy bag I'd be grateful because it would make my life a whole lot better. If it

happens, it happens." (Janet, 36, CD)

Others spoke of how they were able to reframe the negativity associated with periods

of ill health as a "test" and thus something that they could challenge and potentially

overcome:

"Even if it’s harder than what you expected it to be then that’s just another part of the

test, that’s just something you’ve got to accept and apply yourself to work around" (Brian,

24, UC)

At other times, participants reframed the inherent negativity of their illness through

rationalisation in the form of being mindful of the likely worse situations that others find

themselves in:

"I consider myself to have had an easy ride with Crohn’s even though actually I

probably haven’t retrospectively, and in the context of 90% of the world’s population I am in

as good as if not better place than anyone else...I am a relatively lucky human being" (Jason,

42, CD)

Meanwhile, Daniel's change in adaptation score was reflected when he spoke of the

potential for disappointment while dealing with a post-operation wound that wouldn't fully

heal, but how he had found a way in the interim period to instil a feeling of purpose in

himself by raising money for charity:

"I bought myself a chin up bar and I’m basically approaching people to sponsor me so

that I train throughout and then see in say New Year’s Eve in December people have

sponsored me for however many pull ups…so that’s helping me keep some sort of focus on

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feeling like I’m doing something... I’m at least doing something that’s, one, helping my

fitness and, two, driving me to sort of say you know what again I’m not gonna let this beat

me " (Daniel, 36, CD)

Others still reflected on the positive changes they had seen in themselves due to living

with their illness. For one female participant this was explained in terms of her ability to

manage stress:

"It’s made me a lot more I suppose chilled out about not trying to control things I

can’t control, so for instance I used to get really, really annoyed in traffic jams and actually

I’ve found since I sort of got ill and I am a slightly different person now, I’m much less

uptight about it" (Joanna, 44, UC)

Subtheme 3: Realising unconstructive cognitions

Finally, participants who scored highly on the A-IBD demonstrated resilience by

showing adeptness at recognising and altering thoughts and emotions that they acknowledged

would be detrimental to both their physical and mental health as it pertained to their illness.

In light of this, Zara described how important it was to "snap back" when she recognised this

pattern of thinking in response to symptoms:

"Everyone goes through an angry stage at some point in their illness, like I said

sometimes I get frustrated...but it doesn’t take me long to kind of snap back with my mindset"

(Zara, 24, UC)

Similarly, ruminating on the possibility of future symptom occurrence was also a

challenge. One participant in particular talked about how it was more the threat of potential

embarrassment from symptoms occurring in public, the anxiety that had caused him and its

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subsequent repercussions on his willingness to leave the house that was important for him to

confront and recognise as irrational:

"I remember quite distinctly I went to town for the first time after recovering from my

symptoms and I started to get anxious and there was no real reason behind it and I got angry

with myself because I knew I was letting myself slip into bad habits again, so I just basically

told myself to get a grip and realise that my anxiety was irrational and I’ve done it before and

I can do it again, and that anger actually helped me distract myself from the anxiety... it was

almost an irrational level of anxiety, because the anxiety stems from not wanting to open your

bowels in public but like the worst case scenario has happened and it’s actually not as bad as

you’ve built it up in your head" (Brian, 24, UC)

It is important to note that this same participant also acknowledged how the anger he

spoke of could potentially be deleterious and that he rather used this emotion to channel into

his hobby of power lifting:

"It depends to what extent you’re angry and frustrated, so if you’re letting it

physically cause you stress then yeah that can reinforce symptoms, it can reinforce bad habits

and things, but you can use anger and frustration positively, so almost turn it into eustress

rather than distress" (Brian, 24,UC)

Retrospectively, another participant spoke of how he was at one time literally

obsessed with assessing his disease activity and explained how this wasn't worthwhile:

"Every day was Crohn’s and then I’d come home and do my own bloody HBI

(Harvey Bradshaw Index) and then start pouring over my spreadsheet and wellness and

whether I’m on a downward trend or an upward trend...the one thing that I didn’t analyse on

top of that was how obsessed was I with my disease that day and then did it take up every

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waking minute worrying about whether I would need that hemicolectomy or whatever"

(Jason, 42, CD)

This notion of obsession links to the final way in which participants who scored high

in adaptation demonstrated an ability to recognise unconstructive cognitions and that was in

relation to being able to resist being mentally 'consumed' by the illness as Daniel described it,

further evidencing his transition from low to high adaptation:

"It’s quite easy to sort of sit there and just sort of let it consume you and think that

that’s it, because I did that and I did it lots of times" (Daniel, 36, CD)

For another participant it was the explicit desire to not be 'defined' by the illness,

having felt like she had been so in the past:

"I don’t want to let it define me again, if it slows me down every now and again then I

think I can sort of accept that but I don’t want it to be everything that I am again because that

wasn’t very nice...I’ll get annoyed about it but I’m absolutely willing and sort of wanting that

to be just a temporary thing rather than thinking oh this is how it’s gonna be forever now and

I’m trying to think this is a little cloud coming across sunshine" (Joanna, 44, UC)

Differences in the degree to which those demonstrating high and low adaptation

demonstrated an ability to remain resilient despite their illness was therefore alluded to in

three distinct ways. Highly adapted participants frequently demonstrated this ability by

minimising the negative affect associated with the limitations and ambiguousness in terms of

symptom onset associated with their illness, by reframing the inherent negativity of living

with IBD and finding positives in the situation, and by better recognising negative thought

patterns when they were beginning to manifest.

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Theme 3: Contingencies

The final theme that emerged from the interviews was that of 'contingencies'. While it

was evident that the higher and lower scorers on the A-IBD could be differentiated by their

willingness to engage and their psychological and emotional resilience, there were

undeniably certain contingencies that need to be taken into account which may also

differentiate the two groups. These contingencies can be categorised into 'disease factors' and

'social factors'.

Subtheme 1: Disease factors

A common issue for those scoring lower on the A-IBD was the existence of often

physical, but also psychological comorbidities that further complicated living with IBD,

arguably interfering with the process of adapting to their life as a patient with IBD. For

example, one participant spoke of how she had developed chronic kidney disease as a result

of one of her medications and the psychological impact this had on her:

"the doctors should have picked up on it sooner rather than it be permanent, and at the

time I was 22 and I’d had Crohn’s for 8 years at that stage, so being told again that I’ve

another lifelong condition that I didn’t cause either, it’s just those kind of very negative

things, you know, why me?" (Rhian, 24, CD)

While fatigue was almost unanimously an issue for participants, be they higher or

lower scorers on the A-IBD, for one participant it was the extra fatigue that was a

consequence of his arthritis that was compounding the difficulties of life with IBD and the

challenge of engaging despite fatigue in particular:

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"My arthritis has sort of just continuously gotten worse, or at least has been a constant

thing rather than before when it had flared up a couple of times. Since I started working that

has just sort of drained a lot more of my energy than what I was prepared" (Bob, 24, UC)

Others meanwhile had to contend with simultaneous physical and psychological

comorbidities over and above their IBD, with one participant describing her difficulties with

not only fibromyalgia but also depression:

"Well depression is the main thing, I mean it’s a really big thing with it and that

comes with the Fibromyalgia as well because I mean I’ve sat in my daughter’s office crying,

I’m 57 and I feel like I’m already 90 and that’s because of all the things that I’ve got wrong"

(Sharon, 57, CD)

While other such as Daniel, while not suffering from depression as such, reflected on

the difficulties of dealing with the psychological side effects of his previous medication that

he took before making his stoma permanent which was likely a factor in his originally low

score on the I-ABD:

"I was on Humira for a while and what I used to find with that is if I took it, the next

day I’d just feel a bit…I don’t want to use the term depressed because it’s not that bad but I

just didn’t feel right and then sometimes what would happen is you’d be in that sort of mood

and then something would happen that day and it might just be something really tiny but it

affects you 10X more, whether it’s something that makes you angry, makes you upset…it

didn’t seem to work for the happy side " (Daniel, 36, CD)

Finally, sometimes it was the consequences of previous surgery that were clearly

limiting the engagement of participants:

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"Because of the amount of scar tissue I have from the surgeries that I’ve had means

that I can’t move around as much as I used to be able to, I can’t stand up for any huge length

of time or walk any great distance, as a result of that I’m not as active as I used to be and I’ve

put on weight, that sort of thing so yeah to me it’s a bit of a bit of a vicious thing that I don’t

know how to get out of" (Sarah, 52, CD)

Subtheme 2: Social factors

In conjunction with the added disease factors that lower scorers on the A-IBD tended

to be faced with, they also communicated a range of social factors that are likely to have

inhibited adaptation to their illness. In some instances it was a lack of family support and

understanding that was cited, as was the case with Elaine who had reverted from being in the

high scoring A-IBD group to the low scorers:

"Even though I’ve had this disease for 4 years they don’t understand what the

symptoms are, they don’t understand the fact that yeah you can get tired and you can get all

these symptoms very quickly and sometimes I’ve had arguments about it as well, especially

with my parents, about the fact that I can’t do a lot of stuff because of my Crohn’s but they

just don’t seem to understand" (Elaine, 23, CD)

Another participant described how, on top of dealing with depression, she had gone

through a divorce with her previous husband of 18 years prior to bowel resection surgery

which meant she would require a temporary ostomy bag:

"His reaction was if I was gonna have a bag he was gonna leave me so I did it (ended

the relationship) before he did... it did get me down quite a lot" (Katie, 45, CD)

One participant expressed her difficulties with managing her symptoms while at work

which had triggered anxiety issues and subsequently led to her losing her job:

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"I was working like a busy store and the facilities there weren’t ideal because they

didn’t really have for example a disabled toilet for the staff, there was only one for the

customers which was obviously busy or unclean, so I sort of struggled with my working

environment, that then triggered the anxiety because I worried of sharing with quite a young

work force, so that then triggered the anxiety and then I lost my job... they didn’t really make

reasonable adjustments so in the end they sacked me for incapability or incapacity" (Diane,

28, UC)

Undoubtedly the aforementioned disease factors likely have repercussions on the thus

far listed social problems many of the lower scorers on the A-IBD faced, but perhaps none

were as directly linked as one participant whose 12-13 year long, ongoing fistula issue

subsequently led to both her inability to work and simultaneously the breakdown of her

relationship at the time, culminating in often being isolated from others:

"I keep everyone at bay, I just don't like my body and I find for me managing it takes

up a lot of my time...I feel with the fistula I constantly feel dirty and not so much from the

scars, I really don't care about those, but it's more I can't trust my body to behave socially"

(Stephanie, 40, CD)

Through all of these issues however, it should be noted that participants were often

aware of the detrimental effects that becoming complacent with their situations could

potentially have, with the above participant in particular explaining how she was trying to

make a conscious effort to begin establishing meaningful relationships and interacting

socially once again by moving closer to her family and beginning a degree in psychology:

"I’m going back to study to be around more like-minded people than what I have

here...I’m hoping with my family I won’t be spending as much time on my own, and I’ve

always tried to do courses, long distance learning, but I miss that interaction with people so

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I’m hoping through this course I will meet more people and spend more time with people.

Apparently if I practice being around people it will get easier" (Stephanie, 40, CD)

The differences between the high and low adapters could therefore be attributed

somewhat to certain disease related social contingencies. In this respect, participants

demonstrating lower adaptation commonly raised issues regarding physical and

psychological comorbidities, as well as certain side-effects of medication, which impact their

ability to function, along with feelings of a lack of support from friends, family and partners.

4.5 Discussion

4.5.1 Summary of findings - thematic analysis

The present study explored primarily the factors associated with high adaptation

compared to low adaptation, with those demonstrating high and low adaptation being

classified as the top and bottom 25% of scorers on the A-IBD from Study 2 (Chapter 3).

Thematic analysis highlighted three core themes relating to 'engagement', 'resilience', and

'contingencies'. With regards to the core theme of engagement, three emergent subthemes

were found including 'fulfilment', 'honesty' and 'openness'. With regards to the core theme of

resilience, another three subthemes were found including 'minimising', 'reframing negativity'

and 'realising unconstructive cognitions'. Finally, with regards to the core theme of

contingencies, two emergent subthemes were found including 'disease factors' and 'social

factors'

4.5.2 Links to literature - thematic analysis

The emergent themes from the current study find reflection in multiple aspects of the

chronic illness literature, as well as IBD-specific literature. For example, with regards to the

subtheme of 'openness', research has indicated that the onset of chronic illness is consistently

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associated with decreased openness (Glavic et al., 2014; Jokela et al., 2015), which in turn

may impact QoL via enhanced support systems (Schirm, 2012). For instance, one highly

adapted participant indeed explicitly mentioned the positive impact he had experienced from

publishing a book on his experiences with IBD. Crucially, the current study's findings, in

particular the theme of 'honesty' highlighted notions of self-care and patient knowledge. This

was demonstrated by the highly adapted participants' better understanding and honesty as it

pertained to their fatigue and when they should limit themselves accordingly to protect their

health, a facet of self-care that was raised in a recent qualitative study focused on self-care in

patients with IBD (Wickman et al., 2016). Similarly, highly adapted participants were honest

in terms of their ability to exert themselves with regards to getting out the house or

exercising, for example, the latter of which has been shown to provide psychological benefit

in IBD (Bilski et al., 2013) which may relate in part to these participants' overall greater QoL

than less adapted participants. In addition, the theme of 'resilience', demonstrated particularly

by the higher adapted participants, has been associated with improved HRQoL in the IBD

literature (Hadianfard et al., 2015; Lanagran et al., 2016), again supporting the notion that

these patients should report higher subjective QoL. Resilience has also repeatedly been

referred to as a method of adaptive coping that enables those facing chronic stressors to strive

(Cicchetti & Rogosch, 2009; Hopwood & Treloar, 2008) as evidenced by the participants in

the current study when faced with the challenges of IBD. Finally, the 'contingencies' theme

echoes the sentiment found in much research on the correlates of diminished QoL stating the

deleterious effects of increased disease activity and poor social support (Kalafteli et al.,

2013; Katz et al., 2016). These concerns were mostly highlighted by those demonstrating a

lower degree of adaptation which is in line with these patients' generally lower level of QoL.

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4.5.3 Summary of findings - adaptation - state or trait?

The current study also investigated within this sub sample of 16 patients with IBD

whether the concept of adaptation to IBD is dynamic, i.e. whether it is a state or trait. In this

instance it was found that only two participants between T1 (Study 2, Chapter 3) and T2 (the

current study) switched between the top and bottom 25% of scorers on the A-IBD (based on

the scores from Study 2). Specifically, six participants displayed no change in their degree of

adaptation, three participants improved in adaptation and six deteriorated. As such, while

some participants demonstrated a stable adaptation score between T1 and T2, adaptation was

proven to be a dynamic concept due to the variability in a number of the participants' A-IBD

scores.

4.5.4 Links to literature - adaptation - state or trait?

The comparison of the T1 and T2 A-IBD results from the current study also echo

much of the literature regarding adaptation to chronic illness. For instance, the above results

demonstrate the potential for vast variability in one's degree of adaptation over a relatively

short time period of time (the time between T1 and T2 in this instance was little over a year).

Furthermore, this variability was shown to manifest in both directions, with some patients

demonstrating increased adaptation and others demonstrating decreased adaptation. As such,

these results find reflection in the literature in that adaptation has repeatedly been advocated

as being non-linear (Stanton et al., 2007). In conjunction with this, the qualitative results

demonstrate the vast array of factors that contribute to one's degree of adaptation and are thus

antecedents of the factors of the A-IBD. For example, the current study found that besides

disease-related factors, multiple other factors play an important role in determining

adaptation to IBD such as social factors, psychological resilience, and one's willingness to

engage with their environment in general. This too is put forward in the adaptation literature

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in that outside of the physical limitations that diseases impose during periods of illness

exacerbation, other contextual factors such as the understanding of those in one's work

environment, for example, is also important to consider. Consequently, the current study

demonstrates the importance of evaluating the context of the patient in understanding their

adaptation, appreciating that heterogeneity is the rule, not the exception (Larsen & Hummel,

2012).

4.5.5 In Summary

Overall, the current study builds on the narrative of this thesis by, firstly, uncovering

what the potential factors are that contribute to possible fluctuations in one's degree of

adaptation to IBD over time. As such, not only has the current thesis conceptualised and

operationalised adaptation to IBD where it was previously lacking, as well as ascertaining the

utility of understanding this concept in terms of its ability to predict QoL, but we have now

reached a point whereby we are understanding of the antecedents of this adaptation. In

conjunction, we now understand that high adaptation as measured by the A-IBD is not merely

associated with higher QoL, but the current study's findings reflect notions of self-care as

well, highlighted by the subthemes of 'honesty' and 'openness'. For example, in the former,

those high in adaptation were honest with themselves about when their fatigue was likely at a

point where further exertion would result in harm. With regards to the latter meanwhile, those

high in adaptation were also open and transparent about their illness with friends and in their

work environment in case they should feel unable to socialise or manage their work.

Consequently, although the current thesis has advocated adaptation for its ability in

predicting QoL, it also is an appropriate process to understand since it is evident that those

high in adaptation also evidence appropriate self-care. Furthermore, the current study

confirms the concept of adaptation is indeed dynamic and thus susceptible to change over

time.

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With a fully developed understanding of the meaning of adaptation in terms of those

with IBD, not only can better interventions now be designed around this knowledge, but the

template by which this understanding was developed can now be applied to other illness

populations in an attempt to conceptualise, operationalise and alter adaptation in these

patients as well with the aim of improving patient QoL.

4.5.6 Methodological limitations

With regards to the limitations of the current study, there are arguably some issues

regarding the subsample of patients with IBD that were involved. Firstly, the participants that

were recruited for this study were a subsample of the 307 participants recruited in Study 2

(Chapter 3), of which participants could be of any nationality or culture. However, the current

study reverted to the recruitment criteria used in Study 1's thematic analysis whereby

participants were only eligible to participate if they were living within the UK. While this

was decided upon for pragmatic reasons, it does raise an inconsistency in the sampling

method and bring into question whether the measure of A-IBD as it was determined in Study

2 is applicable if it is applied to an exclusively UK-based sample of patients with IBD.

Furthermore, the selection criterion of those demonstrating high and low adaptation as being

in the top and bottom 25% of scorers on the A-IBD from Study 2 is a relatively subjective

determination of high and low adaptation, respectively. The criterion of 25% from the top and

bottom scorers was decided upon to ensure a sufficiently large pool of prospective

participants was available to contact and allow for the interviews to be commenced as quickly

as possible. While the subsequent thematic analysis did reveal some rich data as to the

differences between the high and low scorers based on this 25% criterion, it is possible that

the results may have differed more extremely had the participants been from, for example, the

top and bottom 10% of scorers on the A-IBD.

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In conjunction with this, with regards to the study design, participants were asked to

reflect on the answers they had given to the A-IBD from Study 2 despite haven given these

answers a year prior to the current study. Due to the demonstrated dynamic nature of

adaptation it is likely that participants may have struggled to recall their state of mind and

reasoning behind their responses and indeed this was evident on occasion during the

interviews. In addition, since the participants knew they would be interviewed regarding their

A-IBD scores, it is feasible that a certain degree of desirability bias may have existed in their

responses in that patients may have under-reported on aspects they deemed to be undesirable

(for items such as "I fear that my illness will stop me achieving my goals in life") and over-

reported on seemingly desirable aspects (such as "I still keep up with my hobbies and

interests that I had before my diagnosis").

4.5.7 Conclusion

To conclude, this study provides support for the notion that a number of contextual

factors contribute to one's degree of adaptation to chronic illness. In this instance, adaptation

to IBD is underpinned by three broad factors - one's level of engagement, one's ability to

demonstrate resilience, and certain disease-related and social contingencies. Furthermore, this

study demonstrates that adaptation is a dynamic concept, evidencing this within a subsample

of patients with IBD. As such, adaptation is a state rather than a trait and has indeed been

shown in the current study to be susceptible to change.

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Chapter Five

General Discussion

5.1 Overview

Despite much research on the effect constructs such as sense making and coping on

illness outcomes in IBD, little has been done to understand the ways in which those living

with IBD adapt to life with the illness. In line with this, the efficacy of psychological

interventions tailored to improve outcomes in this patient population remains poor. As such,

this thesis therefore aimed to address this gap in the existing literature by focusing on the

notion of adaptation to IBD in terms of its conceptualisation and operationalisation and its

utility as a tool for predicting patient outcomes in terms of quality of life. Specifically, it first

sought to conceptualise adaptation to IBD taking a bottom-up approach, interviewing patients

as to the psychological, emotional, behavioural and social changes they had experienced over

time with their illness. Next it aimed to operationalise this construct, to develop a new tool

and to assess the uniqueness of this tool against existing measures of psychological processes.

Further, this thesis aimed to assess the ability of this new tool to predict quality of life over

and above existing measures of sense making. Finally, the thesis involved interviews with

those patients demonstrating high and low adaptation as a means to explore the factors that

either promote or inhibit adaptation. These aims were achieved through four empirical

studies. This final chapter will briefly present the findings of each of these studies. It will

then highlight the links our findings share with the prior literature, outline the key themes

across the thesis, discuss the methodological limitations associated with the thesis and,

finally, describe the implications of the findings for both research and practice.

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5.2 Summary of findings

Study 1 used a qualitative design to explore how patients with IBD experience their

condition and how, if at all, they changed over time psychologically, emotionally,

behaviourally and socially. A thematic analysis revealed three core themes relating to

'making sense of the illness', the 'impact' associated with the illness, and the common

'feelings' experienced by the patients in relation to their disease. Transcending these three

themes was an overarching notion of 'uncertainty' which was subsequently resolved through a

process employing key specific psychological, social and behavioural coping methods.

Central to this process was a balance between their new identity as a patient with their

existing identity as a person who manages a chronic illness. This reflected a novel way to

conceptualise the notion of adaptation in patients with IBD.

Study 2 employed a cross-sectional, quantitative design to operationalise adaptation to

IBD into a reliable measure of the concept. Psychometric analysis of an initial 40-item

questionnaire resulted in an 18-item measure of adaptation (termed the A-IBD) comprised of

four subscales reflecting 'patient identity', 'person identity', 'acceptance' and 'expectations'.

This measure demonstrated mostly good internal reliability based on Cronbach's alphas

analysis. This measure enables patients' adaptation to IBD to be quantified in a way that

reflects their experiences. Study 2 also study sought to investigate whether the A-IBD was

indeed measuring something distinct to already established measures of psychological

processes in the form of sense making, as measured by the BIPQ, and outcomes in the form

of QoL, as measured by the IBDQ. Finally, this chapter aimed to assess the predictive ability

of the A-IBD with regards to QoL as measured by the IBDQ, as well as whether the A-IBD

could predict IBDQ scores over and above the BIPQ. The results suggested that the A-IBD

did indeed measure a construct distinct from that measured by the BIPQ or IBDQ since

correlations between the former and latter measures were weak to moderate. Further, multiple

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regression analyses revealed that the A-IBD significantly predicted both IBDQ and IBDQ-S

scores (a variation of the IBDQ specifically designed for patients with a stoma) and predicted

an extra 5% and 6% of the variance in IBDQ/S scores, respectively, compared to when the

BIPQ predicted IBDQ/S scores alone, justifying the utility of the A-IBD. This study

highlighted the particular importance of identity in impacting QoL scores as suggested by the

multiple regression model. However, differences in the regression models were evident

between the non-stoma and stoma samples, suggesting further research is warranted into

adaptation specific to those patients with stomas.

Finally, Study 3 sought, primarily, to conduct another qualitative, interview-based

analysis of the factors that the top and bottom 25% of scorers on the A-IBD from Chapter 3

felt encouraged or inhibited their degree of adaptation to their illness. The study also utilised

a quantitative design to investigate changes in adaptation as measured by the A-IBD over

time since study 2. In doing so, the aim was to assess whether adaptation was indeed a

dynamic concept as prior literature had suggested and thus a state rather than a trait. Three

emergent themes were found upon thematic analysis of the qualitative data including

'engagement', 'resilience' and 'contingencies'. While the former two themes tended to be

characteristics of higher adapted participants, the contingencies subthemes of 'disease factors'

and 'social factors' put forward a possible explanation as to the reason behind why some

patients may demonstrate low adaptation. Furthermore, upon observation of the change in

adaptation scores of the participants between studies 2 and 3, adaptation was indeed proven

to be a state rather than trait, with six participants displaying no change in adaptation score

while three participants improved and six deteriorated. It is suggested that with the

knowledge gained in this Chapter as to the antecedents of high and low adaptation that future

interventions target these factors in order to maximise patient QoL.

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5.3 Story of the thesis - What is adaptation?

This thesis has explored the notion of adaptation. A number of key issues concerning

the notion of adaptation can be seen to transcend the four empirical studies relating to

adaptation as a response to the crisis of illness, as the prevalence of person identity over

patient identity, as partially dependent on contextual variables, as holistic and as dynamic.

These will now be discussed.

Adaptation as a response to the crisis of illness

From interviewing patients with IBD in Study 1 (Chapter 2) it was evident that being

diagnosed upset these patients' inner equilibrium. The lack of understanding of the illness and

the misconceptions as to what IBD entailed, combined with the all-encompassing impacts of

this newly acquired burden as well as the feelings of anxiety and animosity that these bore on

the patient, ultimately culminating in uncertainty over medication side effects and uncertainty

over future surgery risks and symptom relapse were, as a whole, reminiscent of Moos and

Schaefer's (1984) theory on the process of coping with chronic illness. They argued that

illness represents a crisis and a turning point in the life of the patient, creating disequilibrium

which is reminiscent of the main underlying theme of this first Study in that at the heart of

IBD, and possibly other chronic illnesses, is the sense of loss of what was the patient's life

before diagnosis. Indeed, Linveh and Antonak's (2005) primer on psychosocial adaptation to

chronic illness and disability discusses how aspects such as 'anger/hostility', 'uncertainty and

unpredictability' and issues of 'self-concept' were hallmarks of the reactions to diagnosis that

patients with IBD divulged.

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Adaptation as the prevalence of person identity over patient identity

In conceptualising adaptation to IBD as primarily the balance between one's person

identity with their patient identity in Study 1 (Chapter 2), it was felt that this represented an

ideal goal for the patient. It was felt that by contained within the patient identity were notions

of self-care such as medication adherence, acknowledging disease-related fatigue and

limitations, while the person identity encouraged the sense of self and fulfilment. However,

this conceptualisation was slightly altered from Study 1 upon, firstly, the results of Study 2's

multiple regression analysis on what subscales of the A-IBD predicted QoL and then

confirmed by Study 3's (Chapter 4) qualitative analysis on the characteristics of those

demonstrating high and low adaptation. It was found here that self-care is in fact a

characteristic of the person identity rather than patient identity. As a result, our

conceptualisation of adaptation to IBD is not one of balance between these two identities

(along with the encouragement of acceptance and expectations as outlined in the scale

development chapters of this thesis), but the prevalence of the person identity over the patient

identity. Consequently, patient identity is more associated with a regression to a state that is

reminiscent of the initial 'crisis' period after diagnosis alluded to earlier, while person identity

represents true adaptation, encapsulating notions of the sense of self as well as crucial

practical, self-care elements that are necessary for wellbeing.

Adaptation is partially dependent on contextual variables

Continuing the theme of adaptation as a biopsychosocial construct, often in the

psychological literature there is an underlying notion that psychology alone can explain or

predict an outcome, particularly evident when we consult theories of sense making such as

Taylor's Cognitive Adaptation Theory (1983) or Leventhal et al.'s (1980) Self-Regulatory

Model. However, one of the motivations of this thesis was to portray a slightly different

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outlook on chronic illness and the patient at the heart of it. This was particularly evident in

Study 3 (Chapter 4) where the aim of the Study was to move from what Studies 1 and 2 had

achieved in understanding what adaptation to IBD is, to how does one reach that point and

why do some fail to do so. In asking this question we discovered that a common issue for

those demonstrating low adaptation were social and disease-related factors. Granted these

participants' scores may well improve following an intervention predicated on the findings of

this thesis which would hopefully improve their psychological functioning and possibly their

disease status and social functioning as a by-product, but the resounding message here really

is that contextual factors cannot be discredited. Indeed if we consult Linveh's (2001)

conceptual framework to psychosocial adaptation, he specifically states that there are

antecedents to adaptation (as was emphasised in Study 3) including contextual variables such

as 'biological and biographical status' (current health status, level of physical maturity,

ethnicity), 'psychosocial status' (and 'environmental conditions'.

Adaptation is holistic

Typically in the psychological literature it is observed that adaptation or 'adjustment'

as it is often termed is observed from a more or less purely psychological standpoint. The

nursing literature meanwhile tends to prefer the term 'psychosocial' adjustment or adaptation

to take into account the social environment of the patient as well as their psychological state

since one does not exist without the other (Larsen, 2016). Similarly, medicine tends to focus

on the biomedical aspects of chronic illness. This thesis proposes that the both perspectives

are incomplete. If we are to comprehend chronic illness then we must take a holistic approach

as its impacts are multifaceted and span social, cognitive, emotional, physiological and

behavioural domains, with all domains changing constantly. This has been shown to be true

of IBD and therefore there is no reason to believe it's not true of other chronic illnesses.

Research as far back as that of Vistosky et al. (1961) on patients with polio posed a simple

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question to these patients in how it was possible to deal with the stressors of their illness and

which coping behaviours assisted them in achieving an optimal outcome. These are the basic

principles upon which this thesis was founded, developing an understanding on the process of

adaptation as a result of understanding, first of all, the lived experience of the patient and not

viewing this solely through a psychological prism as was evident with the design of Study 1

(Chapter 2).

Adaptation is dynamic

As adaptation is holistic, dependent on the interplay of an array of variables,

adaptation is also therefore dynamic, changing incrementally on a constant basis as any one

of the factors that determine it varies. Study 3 (Chapter 4) demonstrated this fact, and

although a number of participants demonstrated minor changes in adaptation, it should be

remembered that the design was cross-sectional in nature and thus doesn't account for the

fluctuations in adaptation between the two time points where it was measured.

In summary

This thesis has consisted of four empirical studies which have explored the concept of

adaptation in patients with IBD. From this thesis it is concluded that adaptation is a dynamic

and holistic construct which is a response to the crisis of illness, related to contextual

variables, and illuminates a tension between the person’s identity as a patient with IBD

versus that of a person without.

5.4 Methodological limitations

As is characteristic of all research, each of the studies comprising this thesis carry

methodological limitations. Regarding first the recruitment approach, a number of issues can

be raised. Firstly, choosing to recruit participants for this thesis solely from online sources

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brings up issues of sample bias since the participants recruited from this source may not be

representative to the wider IBD population. Consequently, issues with the degree to which all

the results and conclusions in the current thesis can be interpreted and applied to, for

example, regular outpatients at an IBD clinic. In other words, throughout all the studies one

must consider the degree to which the deductions made are externally valid. However, this

concern is somewhat alleviated by latest UK figures from the Office for National Statistics

(2016) who suggested that almost all adults aged 16 to 44 had recently used the internet

(98.8% to be precise), and as much as 88.3% of 55 to 64 year olds had also been online

within the last 3 months. These numbers do fall for 65 to 74 year olds (74.1%) and drastically

so for 75 year olds and over (38.7%), suggesting also perhaps patients from these latter age

groupings were under represented in the current thesis. Indeed the oldest mean age range

from any of the groups involved in this thesis was Study 3's (Chapter 4) low adaptation group

where the mean age was 41.0 years. Yet despite these, for the most part, encouraging figures,

it does not necessarily mean that these internet users accessed the internet for healthcare

reasons and thus the concern of extrapolating our results to a general IBD populations is

valid. In continuation, caution must also be taken when interpreting the findings due to one

particular disparity in the inclusion criteria between the studies, revolving around the

criterion of participants being required to be a UK resident in Studies 1 and 4, but not in

Study 2 (Study 3 also used the sample from Study 2) whereby participants were recruited

worldwide. Ideally, the criteria for the studies would have been consistent throughout,

however due to the large number of participants required to sufficiently conduct in particular

Study 2's factor analysis of the adaptation measure. In line with this, in this instance it was

felt that it would be more pragmatic to allow for a wider participant pool. The offshoot of this

decision though is the concern of whether the mode of adaptation to IBD differs between

cultures. A final concern on the samples involved in this thesis revolves around the gender

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bias that was evident throughout with female participants outnumbering their male

counterparts in every Study. While this again raises concerns over the generalisability of this

thesis' assertions since they could be considered gynocentric, it is important to account for the

fact that not only is IBD more prevalent in females (Dahlhamer et al., 2016), albeit most of

these statistics are centred on Western studies, but females in psychological research

generally tend to be overrepresented (Rao & Donaldson, 2015). Furthermore, the present

gender bias may require less consideration if one accounts for theories such as Hyde's (2005)

'gender similarities hypothesis' which is based on findings that suggest males and females are

largely more alike than different on most psychological variables.

In continuation, with regards to the A-IBD, the instructions given to the participants at

the time of questionnaire completion did not specifically state that the responses given to the

statements of the A-IBD should be in relation to their IBD diagnosis. This lack of instruction

may have framed the way participants responded to some of the items. For example, some

participants may have felt that the item “I believe my fatigue will sort itself out eventually”,

was not necessarily being with regards to IBD-specific fatigue as they perceived it.

Finally, a limitation in the methodology of this thesis exists in the decision to not

control for disease activity of the participants throughout. This decision was made upon

assessment of a multitude of studies over time that have suggested disease activity was not

necessarily the best predictor of QoL in IBD (Gazzard et al., 1978; Drossman et al., 1989;

Mussell et al., 2004; van der Have et al., 2014) or did not impact psychological functioning

(Larsson et al., 2008) . Furthermore, there is no consensus as to the most accurate and

complete measure of disease activity in IBD and even when any of the suggested metrics is

applied, IBD patients often experience Irritable Bowel Syndrome (IBS) symptoms which

would not impact, for example, disease activity measures that involve biomarkers or

endoscopic analysis. Due to this ambiguity, it was felt that avoiding controlling for disease

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activity was justifiable. However, there are studies that have argued that disease activity is in

fact the biggest predictor of QoL (Vidal et al., 2008; Kalafateli et al., 2013), and if this is in

fact the case then the results of the current thesis may have to again be interpreted with

caution as this possible confounding variable may impact the thesis' internal validity. Indeed,

one of the subthemes of Study 3's qualitative analysis did suggest disease factors had a role in

accounting for those demonstrating low adaptation scores according to the A-IBD.

5.5 Implications for literature

The constant battle to retain a sense and thus adapt, as conceptualised in this instance

by the struggle between the person and patient identity, is the predominant theme that runs

throughout this thesis. In particular, this metaphysical concept finds much reflection in the

work of those such as Charmaz on her research into adaptation and its subsequent impact on

identity change. Charmaz (1995) dictated that adapting to impairment means altering life and

self to accommodate to bodily losses and limits and resolving the lost unity between body

and self, and that it is also struggling with rather than against the illness. Charmaz also

describes the process of adaptation as consisting of three stages: experiencing impairment,

making bodily assessments and identity trade-offs as people weigh their losses and gains, and

finally surrendering to the impairment by relinquishing control over the illness and by

flowing with the experience of it. This summary largely reflects the conceptualisation of

adaptation in this thesis as the new normal being a point where those highly adapted patients

demonstrate a person identity rather than a patient identity. Furthermore, Charmaz describes

this process as repeatedly occurring, as was evidenced by the results of the Study 3 (Chapter

4) adaptation comparison scores with Study 2 (Chapter 3). Other similar conceptualisations

have been put forward by Morea et al. (2008) who argued that upon diagnosis of a chronic

illness, the 'illness self-concept' emerges whereby the illness is integrated into the self, which

in turn affects adaptation to the illness. In this case, the person and patient identity may both

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be facets of this overarching illness self-concept, with the more predominant identity

predicting either positive or negative adaptation, respectively. Interestingly, Morea et al.

(2008) also found that in operationalising the illness self-concept, it predicted unique

variance in the health-related outcomes of fibromyalgia patients where individual aspects

such as optimism and self-esteem did not. In conjunction, our findings echo Breakwell's

(1986) identity process theory, similar in both its concept but also the fact that identity is put

forward as a dynamic process as this thesis also demonstrated. In this theory, Breakwell

argued that identity is shaped by a process of assimilation and accommodation whereby

assimilation involves the influx of new information and accommodation represents the

adaptation that occurs around this new information. In this respect, this theory may find

reflection in this thesis by comparing those who demonstrate high adaptation as better

accommodators of IBD and the constantly evolving challenges it faces, demonstrating better

malleability and thus a better ability to deal with setbacks than those who demonstrate a more

pronounced patient identity.

Therefore, where the current thesis builds on popular paradigms of understanding the

psychological processes behind adaptation, such as Leventhal et al.'s (1980) SRM and

Taylor's (1983) CAT, as well as much of the coping literature, is emphasising the notion of

the individual as an emergent complex system. Psychological processes are important, but the

boundary of an individual is vast and if we are to understand adaptation then we must

appreciate that adaptation is also a product of interactions between the patient and their

environment as put forward by Griffiths (2009) and that the individual, or the identity of the

patient and subsequent adaptation as it pertains to this thesis, emerges through a "dynamic

play of relationships that occur over time" (Battersby, 1998, p. 200). Models of adaptation

such as that of Moss-Morris (2013) do account for adaptation as a product of multiple factors,

but classic perspectives have failed to do so.

165

This is not to completely discredit these seminal theories and popular paradigms of

examining illness outcomes, but rather that the process of adaptation as it is conceptualised in

this thesis is a broad, overarching concept that contains specific instances of these theories.

For instance, the 'expectations' finds reflection in both CAT and the SRM in that the results of

Study 3's (Chapter 4) multiple regression analysis found that higher expectations were

predictive of higher QoL, resembling the 'positive illusions' aspect of CAT and the notion of

'personal control' and 'treatment control' in the SRM where both were predictive of adaptive

outcomes. Meanwhile, the theme of 'fulfilment' found in Study 3 (Chapter 4) as being a

characteristic of highly adapted patients echoes the notion of 'active coping'. However, once

again this thesis diverges from the popular method of categorising coping as 'active' or

'passive' since this thesis also found that 'honesty' regarding fatigue and understanding

limitations in order to maintain wellbeing was also a characteristic of highly adapted patients

and yet this would often be classified as a passive coping approach. As such, the current

thesis focused on specific coping instances, taking into account the intention of the coping

and whether this was adaptive, rather than associating high and low adapters with broad

typologies of coping.

5.6 Implications for research

Future research should first of all address some of the above methodological

limitations associated with the current thesis. As such, standardising the A-IBD in other

cultures would be a valuable next step in the process of validating the measure as it not only

makes the measure applicable in these cultures but also would provide further evidence of

construct validity. This validation in other cultures is also important for ethical reasons as if it

is implemented as part of a treatment protocol with a view to improving QoL but is not

effective due to being standardised mainly in the UK, then this may potentially have negative

repercussions on the patient rather than positive ones in that adaptation may be poorly

166

measured and the patient may then not receive appropriate psychological attention. Future

validation studies should also look to address whether explicitly instructing the patients to

answer the A-IBD in response to their IBD diagnosis alters the findings at all to those found

in the current thesis.

In continuation, investigating the meaning of adaptation in elderly patients with IBD

would be worthwhile, but perhaps even more worthwhile perhaps would be to apply the

findings from this thesis in a pediatric setting. Pediatric IBD occurs at a critical period of

children's' development when the transition from pediatric to adult care can be challenging

(Karwowski et al., 2009), and in fact research has suggested that adolescents with IBD tend

to be more depressed than youth with other chronic diseases (Engstrom, 1992). The notions

of identity prevalent in this thesis are particularly applicable in this demographic since

aspects of development such as brain maturation of emotional regulation, cognitive capacity,

and behavioural impulse control are continuously occuring at this point (Mackner et al.,

2013) and can influence a child's adaptation as a result. As such, the self-concept of the child

at this time in their life is in flux and the added challenges of IBD only compound this

further, so giving adolescents guidance on the best ways to retain their person identity can

protect from the myriad of factors during this age that can deteriorate QoL.

In addition to this, future research should look to address the discussed limitation of

controlling for disease activity. Disease factors were mentioned as a possible contributing

factor to those scoring low in adaptation, and as such it would be valuable to know whether

disease activity moderates the relationship between adaptation scores, as mentioned by the A-

IBD and outcomes such as QoL, or whether disease activity is in fact a mediator of these

constructs. However, research would have to devise a way of reconciling the myriad of ways

by which disease activity could be measured. The current thesis used a subjective measure to

assess QoL in the IBDQ and this could be one approach to measuring disease activity by

167

using the Crohn's Disease Activity Index (CDAI; Best et al., 1976) and the Ulcerative Colitis

Disease Activity Index (UCDAI; Sutherland et al., 1987). However, these measures, and the

CDAI in particular, have come under some scrutiny for focusing too much on criteria such as

diarrhoea, abdominal pain and sense of wellbeing, without objective measures of

inflammation such as mucosal healing and biomarkers of inflammation like C-reactive

protein (Leake, 2013). As a result, future research will likely need to work towards a metric

that satisfies factors that are subjectively important to the patient, but also satisfy clinicians,

and then investigate this as a moderator or mediator of outcome measures such as QoL.

While the processes of sense making and coping, for example, have been investigated

in their relationship with outcomes such as QoL, the relationship between these processes and

other outcomes have also been looked into such as activity impairment (van der Have et al.,

2015) , psychological distress (McCorry et al., 2009) as well as sexual health and functioning

(Knowles et al., 2013). While these would be interesting to evaluate in terms of their

relationship with A-IBD scores, particularly in light of the new IBD-specific distress scale

(The IBD-Distress Scale; Woodward et al., 2016). Of particular relevance to the IBD

population though would be an assessment of the relationship between adaptation and anxiety

and depression due to the high prevalence of these concomitant comorbidities in this illness

group, as well as the link between these mood disorders and relapses of symptoms in patients

with IBD (Bitton et al., 2008). In carrying out this research we may develop an understanding

as to whether adaptation is the 'gold standard' in terms of predicting outcomes or whether it's

specific only to QoL.

Finally, future research to address the cross-sectional nature of this thesis' approach to

conceptualising adaptation would be beneficial. Based on findings in the coping literature

that specific coping strategies may be beneficial at specific points on an illness trajectory

(Petrak et al., 2001; Blalock et al., 1993), it would be worthwhile to investigate the nature of

168

adaptation to IBD at different time points and accordingly develop interventions that are

catered for a patient at a particular point on their disease timeline.

5.7 Implications for practice

The findings from the current thesis have a number of potential implications in the

treatment protocol for patients with IBD. On an individual level, it would be worthwhile to

incorporate direct, regular assessments by a psychologist or team of psychologists that are

part of a wider, multifaceted healthcare team. Currently, for the most part, psychologists are

either not involved at all in the treatment of those with IBD or only involved in a select few

hospitals. This thesis however provides support for the aforementioned research on

determinants of patient QoL that suggests the notion that treatment of IBD should be holistic

since disease activity has not consistently been shown over time to be unequivocally the

biggest concern for patients. Furthermore, this thesis has highlighted the dynamic interactions

that occur between the patient and their illness, with both the patient and the illness affecting

one another as two separate entities. As such, although, for example, we may not consider

disease activity to be the most significant predictor of QoL in all instances, it does likely have

a degree of impact which contributes to lowering patient QoL, which then in turn likely has

an impact on the identity factors found in this thesis, encouraging patient identity and

inhibiting person identity as was alluded to in the Study 3 themes when disease factors were

found to be a common trait of those low in adaptation. Of course much of the onus here is on

the consultants and other members of the medical team to ensure that disease activity is

controlled through the administration of an appropriate treatment regime, but also there is a

role here for psychologists to make patients aware of the factors they can potentially take

control of in spite of their disease activity which have been shown here to predict improved

QoL. Apart from perhaps the most extreme of cases, disease activity does not preclude one

from engendering a person identity. Psychologists can encourage patient empowerment by

169

making them more aware of the factors that contribute to this identity as shown in Study 3 -

encouraging them to engage with their environment and personal passions, devising methods

of improving resilience which is a buffer to illness that can be acquired at any stage of life,

irrespective of age and disease status (Ghanei Gheshlagh et al., 2016). Consequently, even in

times of enhanced disease activity, the intervention of psychologists can help break this

negative feedback loop.

Indeed on a more general level, this thesis should hopefully provide the framework

for more effective psychological interventions for IBD to be formulated. Systematic reviews

have suggested there is no evidence for the long-term efficacy of psychological therapy in

adult patients with IBD in general, indicating that while some approaches such as

psychotherapy or education-based interventions may have a short term effects on QoL and

emotional status, typically at around 12 months these effects dissipate (Timmer et al., 2011).

With the insight gained from this thesis it is hope that we may be able to lengthen the effects

of these interventions by using frameworks that have shown promise in improving outcomes

in IBD such as CBT (Mikocka-Walus et al. 2015) and mindfulness-based cognitive therapy

(Berrill et al., 2014) but adapting these frameworks in line with the critical factors shown in

this thesis to be related to the process of adaptation and the outcome of improved QoL.

Indeed, multicentre RCTs conducted by the likes of van den Brink et al. (2016) on disease-

specific CBT is already paving the way for this approach.

5.8 Conclusion

To date there has been extensive research already conducted into the psychological

correlates of illness outcomes in IBD, predicated largely on popular models and perspectives

of key psychological constricts. However, the notion of how these concepts come together to

form the overarching process of adaptation to IBD, as well as numerous other chronic

170

illnesses, and whether this concept of adaptation has utility in predicting illness outcomes has

received very little attention. Through the four empirical research studies that comprise this

thesis some progress has been made towards understanding this concept, approaching the task

of adaptation from the bottom-up, focusing holistically on the patient experience at the heart

of the process. The result of this endeavour is a new psychometrically robust measure to

assess adaptation which reflects a combination of patient identity, person identity,

expectations and acceptance which has been shown to relate to patient health outcomes.

Further, the results also indicate that if improvement in patient health outcome is to be

achieved, patients should be encouraged to focus on their sense of person identity over their

patient identity, along with developing their level of acceptance and expectations.

Whatsmore, the complex biopsychosocial antecedents that contribute to the engenderment of

adaptation necessitate that the care of patients with IBD should be multimodal, incorporating

regular psychological assessment along with standard medical care.

171

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Appendices

Appendix A - Study One Information Sheet

Participant Information Sheet

An exploration into how Inflammatory Bowel Disease patients adapt to their illness

Researchers

Lawrence Matini, PhD Student, University of Surrey, Guildford, UK

Professor Jane Ogden, Professor of Psychology, University of Surrey, Guildford, UK

Introduction

I am a first year PhD student inviting you to take part in a research study. Before you decide you want to participate it is important for you to understand why the research is being done and what it will involve. Please take the time to read the following information carefully and discuss it family or friends if you wish. If you would like any more information, feel free to contact the primary researcher (Lawrence Matini, l.matini@surrey.ac.uk).

Thank you for reading this.

What is the purpose of the study?

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This study seeks to gain an understanding of how patients with Inflammatory Bowel Disease adapt to their illness. In order to do this we are looking to explore the ways in which these patients think, feel and behave with regards to their illness and whether any of these thoughts, feelings or behaviours change over time.

Do I have to take part?

No, you do not have to participate. It is up to you to decide whether or not to take part. If you do decide that you wish to take part you will be asked to complete a short form to indicate your consent. If you decide to participate you can still change your mind and withdraw from the study entirely at any time by simply informing the researcher that you wish to do so. There will be absolutely no consequences should you wish to withdraw and your data will be deleted immediately.

What will happen to me if I take part?

You will be asked to take part in a 30-45 minute telephone interview during which you will be asked questions about your history with IBD, and whether any thoughts, feelings or behaviours associated with the illness have changed over time.

What are the possible disadvantages or risks of taking part?

We do not anticipate any serious risks of taking part. Although discussing one’s illness has the potential to be emotional and evoke upsetting memories, as mentioned earlier you are within your right to take a break from the interview or withdraw entirely from the study if you are too uncomfortable or upset to continue.

What are the possible benefits of taking part?

A number of benefits would be offered for your participation. Your participation will help to expand this area of research and help to further understanding of patients’ experiences of living with Inflammatory Bowel Disease. You will also contribute to the furthering of psychological interventions aimed at improving the wellbeing of IBD patients, and provide

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information that will specifically aid in the understanding of adaptation to IBD and potentially other chronic illnesses alike.

What happens when the research study stops?

This study will contribute to part of my PhD. However, I also hope to publish the results of this study in a scientific journal. I may also present the results at a scientific conference or a university seminar. I would be happy to discuss the results of the study with you and to send you a copy of the published results once they are available. It will not be possible to identify any information you should provide in any report or publication as you will be given a pseudonym.

What if there is a problem?

Any complaint or concern about any aspect of the study or the way in which you have been treated during the course of the study will be addressed; please contact either Lawrence Matini, l.matini@surrey.ac.uk or Professor Jane Ogden, j.ogden@surrey.ac.uk

 

Will my taking part in the study be kept confidential?

Yes. The information you provide during the study will be kept strictly confidential in any written work. We will need to analyse and store all the results. Only the principal investigator will have access to this stored material. Data will be stored securely for 10 years and then destroyed in accordance with the UK Data Protection Act (1998).

Contact details of researcher and, where appropriate supervisor?

Principal Investigator: Lawrence Matini, email: l.matini@surrey.ac.uk

Supervisor: Professor Jane Ogden, Professor in Psychology and Director of the Psychology PhD programme, University of Surrey, Guildford, UK

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Who is organising and funding the research?

This research is organised by Lawrence Matini as part of a PhD project under the supervision of Professor Jane Ogden.

Who has reviewed the project?

The study has been reviewed and received a favourable opinion from the University of Surrey Ethics Committee. Reference number: EC/2014/07/FAHS

Thank you for taking the time to read this Information Sheet. If you would like to take part in this study, please contact Lawrence Matini to arrange a time for an interview.

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Appendix B - Study One Consent Form

Participant Consent Form

I the undersigned voluntarily agree to take part in the study on the experiences and adaptation to illness in Inflammatory Bowel Disease.

I have read and understood the Information Sheet provided. I have been given a full explanation by the investigators of the nature, purpose, location and likely duration of the study, and of what I will be expected to do. I have been advised about any discomfort and possible ill-effects on my health and well-being which may result. I also understand and consent to the telephone interview being recorded.

I understand that I am free to withdraw from the study at any time without needing to justify my decision and without prejudice.

I confirm that I have read and understood the above and freely consent to participating in this study. I have been given adequate time to consider my participation and agree to comply with the instructions and restrictions of the study.

Full name:

Date:

Appendix C - Study One Interview Schedule

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Hi, my name is Lawrence Matini and I am carrying out some research on Inflammatory Bowel Disease that will be included in the first study of my PhD thesis. Volunteering your time to take part is greatly appreciated and I hope you find the experience a pleasant one. I would like to ask some questions first about your history with IBD, then move on to how your life was in the early days of your diagnosis, and end with how, if at all, your feelings and behaviours have changed over time with regards to your illness. I hope to use the responses you provide to develop a better understanding of the experiences of IBD patients and how patients like yourself adapt to your illness. The interview should take about 30 minutes and will be recorded.

Unless you have any questions then I am ready to begin when you are.

1) Can you tell me when you were first diagnosed with IBD?

2) How did this diagnosis come about?

(transition to the next phase of questions)

3) What were your initial thoughts and feelings about your diagnosis?

4) What were your coping strategies, if any, in the early stages of your illness?

(transition to the final phase of questions)

5) How do you currently feel about your diagnosis of IBD?

6) What factors have helped you manage your illness?

7) What are the biggest changes you have had to make to your life to better deal with your illness? Emotionally, socially, behaviourally…

That is all the questions I have for you. I would quickly like to reiterate my appreciation for your participation and offer you the chance to ask any questions about any aspect of your involvement in the study. Should I have any further questions would it be OK to call you on this number? Thank you once again.

Appendix D - Study One Debrief Sheet

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Debrief Sheet

The development of a new quantitative measure of adaptation to Inflammatory Bowel Disease and an evaluation of the role of adaptation in predicting quality of life

You have now come to the end of the study. We would like to thank you for your participation and provide you with some information about the study you just took part in.

Psychological research has provided much in terms of advancing the understanding of IBD and improving its prognosis. For example, research shows that whilst stress can make the disease worse, factors such as coping and social support can lead to improvements.

To date, however, little is known about how psychological, social and behavioural factors combine to form adaptation to an illness, in this case IBD, and whether this notion can be measured. Further to this, it is yet to be found whether a measure of adaptation can predict patients' quality of life. This is the focus of the current study.

This study aims to build on a previous study that developed an understanding of the aspects that constitute adaptation in IBD in order to form a measure of adaptation and specifically assess whether patients who demonstrate a higher degree of adaptation experience a greater health-related quality of life than those who are less well adapted to their illness.

Overall we will be looking for at least 200 people with IBD to complete this questionnaire and are hoping that we will be able to develop an accurate measurement of adaptation as a means of evaluating the effectiveness of interventions designed to improve outcomes for patients with IBD. Also, we anticipate the development of this measure will contribute to an improved awareness of IBD for healthcare practitioners and lead to improved, more focused interventions that will benefit health-related quality of life in this population.

This study has been reviewed and received favourable ethical approval from the University of Surrey Ethics Committee. Reference number: EC/2014/07/FAHS. If you have any concerns or would like to discuss this study further, feel free to email the principal investigator:

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Lawrence Matini, l.matini@surrey.ac.uk

Principal Investigator

Professor Jane Ogden, j.ogden@surrey.ac.uk

Supervisor

Thank you for taking part.

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Appendix E - Study One University Research Committee Approval

Appendix F - Information Sheet (Studies Two and Three)

Partic ipant

Information Sheet

An

exploration into how

Inflammatory Bowel

Disease patients adapt to their illness

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Researchers

Lawrence Matini, PhD Student, University of Surrey, Guildford, UK

Professor Jane Ogden, Professor of Psychology, University of Surrey, Guildford, UK

Introduction

I am a second year PhD student inviting you to take part in a research study. Before you decide you want to participate it is important for you to understand why the research is being done and what it will involve. If you would like any more information, feel free to contact me: Lawrence Matini (primary researcher), l.matini@surrey.ac.uk

What is the purpose of the study?

This study seeks to, firstly, develop a measure of adaptation to illness in patients with Inflammatory Bowel Disease and investigate whether those who show greater levels of adaptation experience a better quality of life compared to those who score lower on our measure of adaptation. In order to do this we have developed a questionnaire that assesses the way patients with IBD perceive and behave with regards to their illness and will look to see if these scores predict patients' subsequent quality of life scores. A small number of those scoring at the top and bottom of our measure of adaptation will then be contacted for an interview on the aspects that they feel contributed to their score. This will enable us to better ways to encourage adaptation in patients with IBD.

Do I have to take part?

No, you do not have to participate. It is up to you to decide whether or not to take part. If you do decide that you wish to take part you will be asked to complete a short form to provide consent. If you decide to participate you can still change your mind and withdraw from the study entirely at any time by simply closing the questionnaire window. There will be absolutely no consequences should you wish to withdraw and your data will be deleted. However, data can only be deleted before your questionnaire responses have been submitted as all data is stored anonymously and thus cannot be identified for deletion.

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Similarly, those contacted by e-mail for an interview after the questionnaire part of the study can decline to do so without absolutely any consequences. Those who do take part in the interviews may also withdraw from that section of the study and will have their data deleted immediately.

What will happen to me if I take part?

You will be asked to take part in an 15-30 minute online questionnaire during which you will be asked questions about how you perceive your life with IBD and how you behave with regards to your illness which is aimed at measuring how adapted you are to your illness. You will also be asked about your current quality of life while living with IBD.

A selection of those scoring at the top and bottom of the adaptation questionnaire will then be contacted to request an interview on the responses they gave in the questionnaire.

What are the possible disadvantages or risks of taking part?

We do not anticipate any serious risks of taking part. Although reflecting on one's illness has the potential to be emotional and evoke upsetting memories, you are within your right to take a break from the questionnaire or interview, or to even withdraw entirely from the study at any point as mentioned earlier if you are too uncomfortable or upset to continue.

What are the possible benefits of taking part?

A number of benefits are expected from participating. Your participation will help significantly to expand this area of research and fill a large gap in the existing literature on adaptation to IBD as well as potentially other chronic illnesses. You will also hopefully contribute to the development of treatment protocols to include psychological interventions that are tailored to individual patients with the aim of improving patient wellbeing.

What happens when the research study stops?

This study will form a major part of my PhD. However, I also aim to publish the results of this study in a scientific journal. I may also present the results at a scientific conference or a

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university seminar. I would be happy to discuss the results of the study with you and to send you a copy of the published results once they are available. If this interests you, you will have an opportunity to enter your email address after the study debriefing which follows the questionnaire.

What if there is a problem?

Any complaint or concern about any aspect of the study will be addressed; please contact Lawrence Matini, l.matini@surrey.ac.uk.

Will my taking part in the study be kept confidential?

Yes. The information you provide during the study will be kept strictly confidential and you will not be associated with your data in any written work. We will need to analyse and store all the results and only the principal investigator and supervisor, Professor Jane Ogden, will have access to this. Personal data will be stored securely in accordance with the UK Data Protection Act (1998). Research data will be retained securely for a minimum of 10 years.

Contact details of researcher and, where appropriate, supervisor?

Principle Investigator: Lawrence Matini, email: l.matini@surrey.ac.uk

Supervisor: Professor Jane Ogden, Professor in Psychology and Director of the Psychology PhD programme, University of Surrey, Guildford, UK. email: j.ogden@surrey.ac.uk

Head of School of Psychology: Professor Peter Hegarty. email: p.hegarty@surrey.ac.uk

Who is organising and funding the research?

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This research is organised by Lawrence Matini as part of a PhD project under the supervision of Professor Jane Ogden and is self funded.

Who has reviewed the project?

The study has been reviewed and received a favourable opinion from the University of Surrey Ethics Committee. Reference number: EC/2014/157/FAHS.

Thank you for taking the time to read this Information Sheet. If you would like to take part in this study then please continue.

Appendix G - Consent Form (Studies Two and Three)

Participant Consent Form

I the undersigned voluntarily agree to take part in this study on adaptation to illness and quality of life in Inflammatory Bowel Disease.

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I have read and understood the Information Sheet provided. I have been given a full explanation by the investigators of the nature, purpose, location and likely duration of the study, and of what I will be expected to do. I have been advised about any discomfort and possible ill-effects on my health and well-being which may result. I also understand and consent to a telephone interview being recorded should I be selected for participation.

I understand that I am free to withdraw from the study at any time without needing to justify my decision and without prejudice.

I confirm that I have read and understood the above and freely consent to participating in this study. I have been given adequate time to consider my participation and agree to comply with the instructions and restrictions of the study.

I consent to my personal data, as outlined in the accompanying information sheet, being used for this study. I understand that all personal data relating to participants is held and processed in the strictest confidence, and in accordance with the Data Protection Act (1998).

(Participants will click a button at the bottom of this form to confirm their consent)

Appendix H - Debrief Sheet (Study Two)

Debrief Sheet

The development of a new quantitative measure of adaptation to Inflammatory Bowel Disease and an evaluation of the role of adaptation in predicting quality of life

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We would like to thank you for your participation and provide you with some information about the research you just took part in.

Psychological research has provided much in terms of advancing the understanding of IBD and improving its prognosis. For example, research shows that while stress can make the disease worse, factors such as coping and social support can lead to improvements.

To date, however, little is known about how psychological, social and behavioural factors combine to form adaptation to an illness, in this case IBD, and whether this notion can be measured. Further to this, it is yet to be found whether a measure of adaptation can predict patients' quality of life. This is the focus of the current study.

This study aims to build on a previous study that developed an understanding of the aspects that constitute adaptation in IBD in order to form a measure of adaptation and specifically assess whether patients who demonstrate a higher degree of adaptation experience a greater health-related quality of life than those who are less well adapted to their illness.

Overall we will be looking for at least 200 people with IBD to complete this questionnaire and are hoping that we will be able to develop an accurate measurement of adaptation as a means of evaluating the effectiveness of interventions designed to improve outcomes for patients with IBD. We anticipate the development of this measure and the subsequent interviews on the factors that contribute to adaptation will lead to an improved awareness of IBD for healthcare practitioners and lead to improved, more focused interventions that will benefit health-related quality of life in this population.

This study has been reviewed and received favourable ethical approval from the University of Surrey Ethics Committee. If you have any concerns or would like to discuss this study further, feel free to email the lead researcher or research supervisor:

Lawrence Matini, l.matini@surrey.ac.uk

Principal Investigator

Professor Jane Ogden, j.ogden@surrey.ac.uk

Supervisor

Please enter your e-mail address below if you would like to receive a summary of the findings and would consider taking part in a possible interview regarding your results:

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Thank you for taking part.

Appendix I - Adaptation to IBD Questionnaire (Study Two)

Read the statements on the left and mark your level of agreement on the right. If you do not have an opinion on a particular statement, please mark "Neither agree nor disagree".

If at any point you wish to withdraw from the study you may close the questionnaire window and your data will be deleted. Once you submit your answers your data may not be removed.

Person identity

1) I forget that I have IBD (Strongly Disagree, Disagree, Neither agree nor disagree, Agree, Strongly Agree)

2) I go out and socialise regardless of any symptoms I may be experiencing

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3) I experience minimal disruptions to my school or work life despite my illness

4) I still keep up with my hobbies and interests that I had before my diagnosis

5) I exert myself just as much as I used to before my diagnosis

6) I try and live a normal life like everyone else

7) I ignore any fatigue I may be experiencing and try to function as normal

8) I do not believe my illness is that serious

9) I am dismissive of my symptoms

10) My illness will not get the better of me

Patient identity

1) I'm conscious that when I go out with my friends I may suddenly need the toilet

2) I think about how my illness has affected me in the past

3) I fear that my illness will stop me achieving my goals in life

4) I wonder about how my health will be in the future

5) Life will never be the same as it was before my diagnosis

6) There is nothing I can do to make myself better

7) If I exercise then my symptoms will return

8) I spend time researching medications or other treatment options

9) I label myself as a person with a chronic illness

10) I feel that others see me as an ill person

Acceptance

1)Some days I will not be as productive as I want to be

2) I accept that I have a chronic illness which has no cure

3) I am accepting of the possibility of future flare ups of my symptoms

4) I feel just as positive about life despite my illness

5) I get angry or upset when I experience symptoms

6) There will be fluctuations in my mood with regards to my illness

7) I am comfortable discussing my symptoms with my family and close friends

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8) I just have to keep moving forward with my life

9) I feel like my illness is a burden

10) I am comfortable with my body image

Expectations

1) If my symptoms are under control then they will not return providing I continue my treatment

2) I will live the life I had before being diagnosed

3) I will be cured from my illness one day

4) I will achieve everything I always set out to achieve in life

5) I expect things will only get easier with time

6) I expect my doctor will eventually find a medication that solves my problems

7) Surgery will completely turn things around for me

8) I believe my fatigue will sort itself out eventually

9) I expect I will relapse at some point

10) My illness will not interfere in any way with any romantic relationships

Appendix J - Brief Illness Perceptions Questionnaire (Study Two)

For the following questions, please circle the number that best corresponds to your views:

How much does your illness affect your life?

0 – no affect at all, 1, 2, 3, 4, 5, 6, 7, 8, 9, 10 – severely affects my life

How long do you think your illness will continue?

0 – a very short time, 1, 2, 3, 4, 5, 6, 7, 8, 9, 10 – forever

How much control do you feel you have over your illness?

0 – absolutely no control, 1, 2, 3, 4, 5, 6, 7, 8, 9, 10 – extreme amount of control

How much do you think your treatment can help your illness?

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0 – not at all, 1, 2, 3, 4, 5, 6, 7, 8, 9, 10 – extremely helpful

How much do you experience symptoms from your illness?

0 – no symptoms at all, 1, 2, 3, 4, 5, 6, 7, 8, 9, 10 – many severe symptoms

How concerned are you about your illness?

0 – not at all concerned, 1, 2, 3, 4, 5, 6, 7, 8, 9, 10 – extremely concerned

How well do you feel you understand your illness?

0 – don’t understand at all, 1, 2, 3, 4, 5, 6, 7, 8, 9, 10 – understand very clearly

How much does your illness affect your emotionality? (e.g. does it make you angry, scared, upset or depressed?)

0 – not at all affected emotionally, 1, 2, 3, 4, 5, 6, 7, 8, 9, 10 – extremely affected emotionally

Appendix K - Inflammatory Bowel Disease Questionnaire (Study Two)

This questionnaire is designed to find out how you have been feeling during the last 2 weeks. You will be asked about symptoms you have been having as a result of your inflammatory bowel disease, the way you have been feeling in general, and how your mood has been.

How frequent have your bowel movements been during the last two weeks? Please indicate how frequent your bowel movements have been during the last two weeks by picking one of the options from

1 BOWEL MOVEMENTS AS OR MORE FREQUENT THAN THEY HAVE EVER BEEN 2 EXTREMELY FREQUENT 3 VERY FREQUENT 4 MODERATE INCREASE IN FREQUENCY OF BOWEL MOVEMENTS 5 SOME INCREASE IN FREQUENCY OF BOWEL MOVEMENTS 6 SLIGHT INCREASE IN FREQUENCY OF BOWEL MOVEMENTS 7 NORMAL, NO INCREASE IN FREQUENCY OF BOWEL MOVEMENTS

How often has the feeling of fatigue or of being tired and worn out been a problem for you during the last 2 weeks? Please indicate how often the feeling of fatigue or tiredness has been a problem for you during the last 2 weeks by picking one of the options from

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1 ALL OF THE TIME 2 MOST OF THE TIME 3 A GOOD BIT OF THE TIME 4 SOME OF THE TIME 5 A LITTLE OF THE TIME 6 HARDLY ANY OF THE TIME 7 NONE OF THE TIME

How often during the last 2 weeks have you felt frustrated, impatient, or restless? Please choose an option from

1 ALL OF THE TIME 2 MOST OF THE TIME 3 A GOOD BIT OF THE TIME 4 SOME OF THE TIME 5 A LITTLE OF THE TIME 6 HARDLY ANY OF THE TIME 7 NONE OF THE TIME

How often during the last 2 weeks have you been unable to attend school or do your work because of your bowel problem? Please choose an option from

1 ALL OF THE TIME 2 MOST OF THE TIME 3 A GOOD BIT OF THE TIME 4 SOME OF THE TIME 5 A LITTLE OF THE TIME 6 HARDLY ANY OF THE TIME 7 NONE OF THE TIME

How much of the time during the last 2 weeks have your bowel movements been loose? Please choose an option from

1 ALL OF THE TIME 2 MOST OF THE TIME 3 A GOOD BIT OF THE TIME 4 SOME OF THE TIME 5 A LITTLE OF THE TIME 6 HARDLY ANY OF THE TIME 7 NONE OF THE TIME

How much energy have you had during the last 2 weeks? Please choose an option from

1 NO ENERGY AT ALL 2 VERY LITTLE ENERGY 3 A LITTLE ENERGY 4 SOME ENERGY 5 A MODERATE AMOUNT OF ENERGY 6 A LOT OF ENERGY 7 FULL OF ENERGY

How often during the last 2 weeks did you feel worried about the possibility of needing to have surgery because of your bowel problem? Please choose an option from

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1 ALL OF THE TIME 2 MOST OF THE TIME 3 A GOOD BIT OF THE TIME 4 SOME OF THE TIME 5 A LITTLE OF THE TIME 6 HARDLY ANY OF THE TIME 7 NONE OF THE TIME

How often during the last 2 weeks have you had to delay or cancel a social engagement because of your bowel problem? Please choose an option from

1 ALL OF THE TIME 2 MOST OF THE TIME 3 A GOOD BIT OF THE TIME 4 SOME OF THE TIME 5 A LITTLE OF THE TIME 6 HARDLY ANY OF THE TIME 7 NONE OF THE TIME 1. How often during the last 2 weeks have you been troubled by cramps in your abdomen? Please

choose an option from

1 ALL OF THE TIME 2 MOST OF THE TIME 3 A GOOD BIT OF THE TIME 4 SOME OF THE TIME 5 A LITTLE OF THE TIME 6 HARDLY ANY OF THE TIME 7 NONE OF THE TIME

How often during the last 2 weeks have you felt generally unwell? Please choose an option from

1 ALL OF THE TIME 2 MOST OF THE TIME 3 A GOOD BIT OF THE TIME 4 SOME OF THE TIME 5 A LITTLE OF THE TIME 6 HARDLY ANY OF THE TIME 7 NONE OF THE TIME

How often during the last 2 weeks have you been troubled because of fear of not finding a washroom? Please choose an option from

1 ALL OF THE TIME 2 MOST OF THE TIME 3 A GOOD BIT OF THE TIME 4 SOME OF THE TIME 5 A LITTLE OF THE TIME 6 HARDLY ANY OF THE TIME 7 NONE OF THE TIME

How much difficulty have you had, as a result of your bowel problems, doing leisure or sports activities you would have liked to have done during the last 2 weeks? Please choose an option from

1 A GREAT DEAL OF DIFFICULTY; ACTIVITIES MADE IMPOSSIBLE

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2 A LOT OF DIFFICULTY 3 A FAIR BIT OF DIFFICULTY 4 SOME DIFFICULTY 5 A LITTLE DIFFICULTY 6 HARDLY ANY DIFFICULTY 7 NO DIFFICULTY; THE BOWEL PROBLEMS DID NOT LIMIT SPORTS OR LEISURE

ACTIVITIES

How often during the last 2 weeks have you been troubled by pain in the abdomen? Please choose an option from

1 ALL OF THE TIME 2 MOST OF THE TIME 3 A GOOD BIT OF THE TIME 4 SOME OF THE TIME 5 A LITTLE OF THE TIME 6 HARDLY ANY OF THE TIME 7 NONE OF THE TIME

How often during the last 2 weeks have you had problems getting a good night's sleep, or been troubled by waking up during the night? Please choose an option from

1 ALL OF THE TIME 2 MOST OF THE TIME 3 A GOOD BIT OF THE TIME 4 SOME OF THE TIME 5 A LITTLE OF THE TIME 6 HARDLY ANY OF THE TIME 7 NONE OF THE TIME

How often during the last 2 weeks have you felt depressed or discouraged? Please choose an option from

1 ALL OF THE TIME 2 MOST OF THE TIME 3 A GOOD BIT OF THE TIME 4 SOME OF THE TIME 5 A LITTLE OF THE TIME 6 HARDLY ANY OF THE TIME 7 NONE OF THE TIME

How often during the last 2 weeks have you had to avoid attending events where there was no washroom close at hand? Please choose an option from

1 ALL OF THE TIME 2 MOST OF THE TIME 3 A GOOD BIT OF THE TIME 4 SOME OF THE TIME 5 A LITTLE OF THE TIME 6 HARDLY ANY OF THE TIME 7 NONE OF THE TIME

Overall, in the last 2 weeks, how much of a problem have you had with passing large amounts of gas? Please choose an option from

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1 A MAJOR PROBLEM 2 A BIG PROBLEM 3 A SIGNIFICANT PROBLEM 4 SOME TROUBLE 5 A LITTLE TROUBLE 6 HARDLY ANY TROUBLE 7 NO TROUBLE

Overall, in the last 2 weeks, how much of a problem have you had maintaining or getting to, the weight you would like to be at? Please choose an option from

1 A MAJOR PROBLEM 2 A BIG PROBLEM 3 A SIGNIFICANT PROBLEM 4 SOME TROUBLE 5 A LITTLE TROUBLE 6 HARDLY ANY TROUBLE 7 NO TROUBLE

Many patients with bowel problems often have worries and anxieties related to their illness. These include worries about getting cancer, worries about never feeling any better, and worries about having a relapse. In general, how often during the last 2 weeks have you felt worried or anxious? Please choose an option from

1 ALL OF THE TIME 2 MOST OF THE TIME 3 A GOOD BIT OF THE TIME 4 SOME OF THE TIME 5 A LITTLE OF THE TIME 6 HARDLY ANY OF THE TIME 7 NONE OF THE TIME

How much of the time during the last 2 weeks have you been troubled by a feeling of abdominal bloating? Please choose an option from

1 ALL OF THE TIME 2 MOST OF THE TIME 3 A GOOD BIT OF THE TIME 4 SOME OF THE TIME 5 A LITTLE OF THE TIME 6 HARDLY ANY OF THE TIME 7 NONE OF THE TIME

How often during the last 2 weeks have you felt relaxed and free of tension? Please choose an option from

1 NONE OF THE TIME 2 A LITTLE OF THE TIME 3 SOME OF THE TIME 4 A GOOD BIT OF THE TIME 5 MOST OF THE TIME 6 ALMOST ALL OF THE TIME 7 ALL OF THE TIME

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How much of the time during the last 2 weeks have you had a problem with rectal bleeding with your bowel movements? Please choose an option from

1 ALL OF THE TIME 2 MOST OF THE TIME 3 A GOOD BIT OF THE TIME 4 SOME OF THE TIME 5 A LITTLE OF THE TIME 6 HARDLY ANY OF THE TIME 7 NONE OF THE TIME

How much of the time during the last 2 weeks have you felt embarrassed as a result of your bowel problem? Please choose an option from

1 ALL OF THE TIME 2 MOST OF THE TIME 3 A GOOD BIT OF THE TIME 4 SOME OF THE TIME 5 A LITTLE OF THE TIME 6 HARDLY ANY OF THE TIME 7 NONE OF THE TIME 1. How much of the time during the last 2 weeks have you been troubled by a feeling of having to go

to the bathroom even though your bowels were empty? Please choose an option from

1 ALL OF THE TIME 2 MOST OF THE TIME 3 A GOOD BIT OF THE TIME 4 SOME OF THE TIME 5 A LITTLE OF THE TIME 6 HARDLY ANY OF THE TIME 7 NONE OF THE TIME

How much of the time during the last 2 weeks have you felt tearful or upset? Please choose an option from

1 ALL OF THE TIME 2 MOST OF THE TIME 3 A GOOD BIT OF THE TIME 4 SOME OF THE TIME 5 A LITTLE OF THE TIME 6 HARDLY ANY OF THE TIME 7 NONE OF THE TIME

How much of the time during the last 2 weeks have you been troubled by accidental soiling of your underpants? Please choose an option from

1 ALL OF THE TIME 2 MOST OF THE TIME 3 A GOOD BIT OF THE TIME 4 SOME OF THE TIME 5 A LITTLE OF THE TIME 6 HARDLY ANY OF THE TIME 7 NONE OF THE TIME

How much of the time during the last 2 weeks have you felt angry as a result of your bowel problem? Please choose an option from

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1 ALL OF THE TIME 2 MOST OF THE TIME 3 A GOOD BIT OF THE TIME 4 SOME OF THE TIME 5 A LITTLE OF THE TIME 6 HARDLY ANY OF THE TIME 7 NONE OF THE TIME

To what extent has your bowel problem limited sexual activity during the last 2 weeks? Please choose an option from

1 NO SEX AS A RESULT OF BOWEL DISEASE 2 MAJOR LIMITATION AS A RESULT OF BOWEL DISEASE 3 MODERATE LIMITATION AS A RESULT OF BOWEL DISEASE 4 SOME LIMITATION AS A RESULT OF BOWEL DISEASE 5 A LITTLE LIMITATION AS A RESULT OF BOWEL DISEASE 6 HARDLY ANY LIMITATION AS A RESULT OF BOWEL DISEASE 7 NO LIMITATION AS A RESULT OF BOWEL DISEASE

How much of the time during the last 2 weeks have you been troubled by nausea or feeling sick to your stomach? Please choose an option from

1 ALL OF THE TIME 2 MOST OF THE TIME 3 A GOOD BIT OF THE TIME 4 SOME OF THE TIME 5 A LITTLE OF THE TIME 6 HARDLY ANY OF THE TIME 7 NONE OF THE TIME

How much of the time during the last 2 weeks have you felt irritable? Please choose an option from

1 ALL OF THE TIME 2 MOST OF THE TIME 3 A GOOD BIT OF THE TIME 4 SOME OF THE TIME 5 A LITTLE OF THE TIME 6 HARDLY ANY OF THE TIME 7 NONE OF THE TIME

How often during the past 2 weeks have you felt a lack of understanding from others? Please choose an option from

1 ALL OF THE TIME 2 MOST OF THE TIME 3 A GOOD BIT OF THE TIME 4 SOME OF THE TIME 5 A LITTLE OF THE TIME 6 HARDLY ANY OF THE TIME 7 NONE OF THE TIME

How satisfied, happy, or pleased have you been with your personal life during the past 2 weeks? Please choose one of the following options from

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1 VERY DISSATISFIED, UNHAPPY MOST OF THE TIME 2 GENERALLY DISSATISFIED, UNHAPPY 3 SOMEWHAT DISSATISFIED, UNHAPPY 4 GENERALLY SATISFIED, PLEASED 5 SATISFIED MOST OF THE TIME, HAPPY 6 VERY SATISFIED MOST OF THE TIME, HAPPY 7 EXTREMELY SATISFIED, COULD NOT HAVE BEEN MORE HAPPY OR PLEASED

Appendix L - Inflammatory Bowel Disease Questionnaire For Patients With Stomas (Study Two)

This questionnaire is designed to find out how you have been feeling during the last 2 weeks. You will be asked about symptoms you have been having as a result of your ulcerative colitis/Crohn’s disease or indeterminate colitis, the way you have been feeling in general, and how your mood has been.

How frequently have you had to empty your colostomy or ileostomy appliance during the last two weeks? Please indicate how frequent your stomal output has been during the last two weeks by picking one of the options from

1 AS OR MORE FREQUENT THAN EVER 2 EXTREMELY FREQUENT 3 VERY FREQUENT 4 MODERATE INCREASE IN FREQUENCY OF EMPTYING 5 SOME INCREASE IN FREQUENCY OF EMPTYING 6 SLIGHT INCREASE IN FREQUENCY OF EMPTYING 7 NORMAL, NO INCREASE IN FREQUENCY OF EMPTYING

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How often has the feeling of fatigue or of being tired and worn out been a problem for you during the last 2 weeks? Please indicate how often the feeling of fatigue or tiredness has been a problem for you during the last 2 weeks by picking one of the options from

1 ALL OF THE TIME 2 MOST OF THE TIME 3 A GOOD BIT OF THE TIME 4 SOME OF THE TIME 5 A LITTLE OF THE TIME 6 HARDLY ANY OF THE TIME 7 NONE OF THE TIME

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How often during the last 2 weeks have you felt frustrated, impatient, or restless? Please choose an option from

1 ALL OF THE TIME 2 MOST OF THE TIME 3 A GOOD BIT OF THE TIME 4 SOME OF THE TIME 5 A LITTLE OF THE TIME 6 HARDLY ANY OF THE TIME 7 NONE OF THE TIME

How often during the last 2 weeks have you been unable to attend school or do your work because of your bowel problem? Please choose an option from

1 ALL OF THE TIME 2 MOST OF THE TIME 3 A GOOD BIT OF THE TIME 4 SOME OF THE TIME 5 A LITTLE OF THE TIME 6 HARDLY ANY OF THE TIME 7 NONE OF THE TIME

How much of the time during the last 2 weeks has your stomal output been looser than normal? Please choose an option from

1 ALL OF THE TIME 2 MOST OF THE TIME 3 A GOOD BIT OF THE TIME 4 SOME OF THE TIME 5 A LITTLE OF THE TIME 6 HARDLY ANY OF THE TIME 7 NONE OF THE TIME

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How much energy have you had during the last 2 weeks? Please choose an option from

1 NO ENERGY AT ALL 2 VERY LITTLE ENERGY 3 A LITTLE ENERGY 4 SOME ENERGY 5 A MODERATE AMOUNT OF ENERGY 6 A LOT OF ENERGY 7 FULL OF ENERGY

How often during the last 2 weeks did you feel worded about the possibility of needing to have surgery because of your bowel problem? Please choose an option from

1 ALL OF THE TIME 2 MOST OF THE TIME 3 A GOOD BIT OF THE TIME 4 SOME OF THE TIME 5 A LITTLE OF THE TIME 6 HARDLY ANY OF THE TIME 7 NONE OF THE TIME

How often during the last 2 weeks have you had to delay or cancel a social engagement because of your bowel problem? Please choose an option from

1 ALL OF THE TIME 2 MOST OF THE TIME 3 A GOOD BIT OF THE TIME 4 SOME OF THE TIME 5 A LITTLE OF THE TIME 6 HARDLY ANY OF THE TIME 7 NONE OF THE TIME

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How often during the last 2 weeks have you been troubled by cramps in your abdomen? Please choose an option from

1 ALL OF THE TIME 2 MOST OF THE TIME 3 A GOOD BIT OF THE TIME 4 SOME OF THE TIME 5 A LITTLE OF THE TIME 6 HARDLY ANY OF THE TIME 7 NONE OF THE TIME

How often during the last 2 weeks have you felt generally unwell? Please choose an option from

1 ALL OF THE TIME 2 MOST OF THE TIME 3 A GOOD BIT OF THE TIME 4 SOME OF THE TIME 5 A LITTLE OF THE TIME 6 HARDLY ANY OF THE TIME 7 NONE OF THE TIME

How often during the last 2 weeks have you been troubled because of fear of not finding a washroom (bathroom, toilet)? Please choose an option from

1 ALL OF THE TIME 2 MOST OF THE TIME 3 A GOOD BIT OF THE TIME 4 SOME OF THE TIME 5 A LITTLE OF THE TIME 6 HARDLY ANY OF THE TIME 7 NONE OF THE TIME

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How much difficulty have you had, as a result of your bowel problems, doing leisure or sports activities you would have liked to have done during the last 2 weeks? Please choose an option from

1 A GREAT DEAL OF DIFFICULTY; ACTIVITIES MADE IMPOSSIBLE 2 A LOT OF DIFFICULTY 3 A FAIR BIT OF DIFFICULTY 4 SOME DIFFICULTY 5 A LITTLE DIFFICULTY 6 HARDLY ANY DIFFICULTY 7 NO DIFFICULTY; THE BOWEL PROBLEMS DID NOT LIMIT SPORTS OR

LEISURE ACTIVITIES

How often during the last 2 weeks have you been troubled by pain in the abdomen? Please choose an option from

1 ALL OF THE TIME 2 MOST OF THE TIME 3 A GOOD BIT OF THE TIME 4 SOME OF THE TIME 5 A LITTLE OF THE TIME 6 HARDLY ANY OF THE TIME 7 NONE OF THE TIME

How often during the last 2 weeks have you had problems getting a good night's sleep, or been troubled by waking up during the night? Please choose an option from

1 ALL OF THE TIME 2 MOST OF THE TIME 3 A GOOD BIT OF THE TIME 4 SOME OF THE TIME 5 A LITTLE OF THE TIME 6 HARDLY ANY OF THE TIME 7 NONE OF THE TIME

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How often during the last 2 weeks have you felt depressed or discouraged? Please choose an option from

1 ALL OF THE TIME 2 MOST OF THE TIME 3 A GOOD BIT OF THE TIME 4 SOME OF THE TIME 5 A LITTLE OF THE TIME 6 HARDLY ANY OF THE TIME 7 NONE OF THE TIME

How often during the last 2 weeks have you had to avoid attending events where there was no washroom (bathroom, toilet) close at hand? Please choose an option from

1 ALL OF THE TIME 2 MOST OF THE TIME 3 A GOOD BIT OF THE TIME 4 SOME OF THE TIME 5 A LITTLE OF THE TIME 6 HARDLY ANY OF THE TIME 7 NONE OF THE TIME

Overall, in the last 2 weeks, how much of a problem have you had with your stomal appliance filling up with a large amounts of gas? Please choose an option from

1 A MAJOR PROBLEM 2 A BIG PROBLEM 3 A SIGNIFICANT PROBLEM 4 SOME TROUBLE 5 A LITTLE TROUBLE 6 HARDLY ANY TROUBLE 7 NO TROUBLE

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Overall, in the last 2 weeks, how much of a problem have you had maintaining or getting to, the weight you would like to be at? Please choose an option from

1 A MAJOR PROBLEM 2 A BIG PROBLEM 3 A SIGNIFICANT PROBLEM 4 SOME TROUBLE 5 A LITTLE TROUBLE 6 HARDLY ANY TROUBLE 7 NO TROUBLE

Many patients with bowel problems often have worries and anxieties related to their illness. These include worries about getting cancer, worries about never feeling any better, and worries about having a relapse. In general, how often during the last 2 weeks have you felt worried or anxious? Please choose an option from

1 ALL OF THE TIME 2 MOST OF THE TIME 3 A GOOD BIT OF THE TIME 4 SOME OF THE TIME 5 A LITTLE OF THE TIME 6 HARDLY ANY OF THE TIME 7 NONE OF THE TIME

How much of the time during the last 2 weeks have you been troubled by a feeling of abdominal bloating? Please choose an option from

1 ALL OF THE TIME 2 MOST OF THE TIME 3 A GOOD BIT OF THE TIME 4 SOME OF THE TIME 5 A LITTLE OF THE TIME 6 HARDLY ANY OF THE TIME 7 NONE OF THE TIME

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How often during the last 2 weeks have you felt relaxed and free of tension? Please choose an option from

1 NONE OF THE TIME 2 A LITTLE OF THE TIME 3 SOME OF THE TIME 4 A GOOD BIT OF THE TIME 5 MOST OF THE TIME 6 ALMOST ALL OF THE TIME 7 ALL OF THE TIME

How much of the time during the last 2 weeks have you had a problem with blood in your stomal output or blood from the rectum? Please choose an option from

1 ALL OF THE TIME 2 MOST OF THE TIME 3 A GOOD BIT OF THE TIME 4 SOME OF THE TIME 5 A LITTLE OF THE TIME 6 HARDLY ANY OF THE TIME 7 NONE OF THE TIME

How much of the time during the last 2 weeks have you felt embarrassed as a result of your bowel problem? Please choose an option from

1 ALL OF THE TIME 2 MOST OF THE TIME 3 A GOOD BIT OF THE TIME 4 SOME OF THE TIME 5 A LITTLE OF THE TIME 6 HARDLY ANY OF THE TIME 7 NONE OF THE TIME

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How much of the time during the last 2 weeks have you been troubled by a feeling of having to go to the bathroom to empty your rectum, even though you have a stoma? Please choose an option from

1 ALL OF THE TIME 2 MOST OF THE TIME 3 A GOOD BIT OF THE TIME 4 SOME OF THE TIME 5 A LITTLE OF THE TIME 6 HARDLY ANY OF THE TIME 7 NONE OF THE TIME

How much of the time during the last 2 weeks have you felt tearful or upset? Please choose an option from

1 ALL OF THE TIME 2 MOST OF THE TIME 3 A GOOD BIT OF THE TIME 4 SOME OF THE TIME 5 A LITTLE OF THE TIME 6 HARDLY ANY OF THE TIME 7 NONE OF THE TIME

How much of the time during the last 2 weeks have you been troubled by accidental soiling of your clothing or bedding because of leaking from your stomal appliance? Please choose an option from

1 ALL OF THE TIME 2 MOST OF THE TIME 3 A GOOD BIT OF THE TIME 4 SOME OF THE TIME 5 A LITTLE OF THE TIME 6 HARDLY ANY OF THE TIME 7 NONE OF THE TIME

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How much of the time during the last 2 weeks have you felt angry as a result of your bowel problem? Please choose an option from

1 ALL OF THE TIME 2 MOST OF THE TIME 3 A GOOD BIT OF THE TIME 4 SOME OF THE TIME 5 A LITTLE OF THE TIME 6 HARDLY ANY OF THE TIME 7 NONE OF THE TIME

To what extent has your bowel problem limited sexual activity during the last 2 weeks? Please choose an option from

1 NO SEX AS A RESULT OF BOWEL DISEASE 2 MAJOR LIMITATION AS A RESULT OF BOWEL DISEASE 3 MODERATE LIMITATION AS A RESULT OF BOWEL DISEASE 4 SOME LIMITATION AS A RESULT OF BOWEL DISEASE 5 A LITTLE LIMITATION AS A RESULT OF BOWEL DISEASE 6 HARDLY ANY LIMITATION AS A RESULT OF BOWEL DISEASE 7 NO LIMITATION AS A RESULT OF BOWEL DISEASE

How much of the time during the last 2 weeks have you been troubled by nausea or feeling sick to your stomach? Please choose an option from

1 ALL OF THE TIME 2 MOST OF THE TIME 3 A GOOD BIT OF THE TIME 4 SOME OF THE TIME 5 A LITTLE OF THE TIME 6 HARDLY ANY OF THE TIME 7 NONE OF THE TIME

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How much of the time during the last 2 weeks have you felt irritable? Please choose an option from

1 ALL OF THE TIME 2 MOST OF THE TIME 3 A GOOD BIT OF THE TIME 4 SOME OF THE TIME 5 A LITTLE OF THE TIME 6 HARDLY ANY OF THE TIME 7 NONE OF THE TIME

How often during the past 2 weeks have you felt a lack of understanding from others? Please choose an option from

1 ALL OF THE TIME 2 MOST OF THE TIME 3 A GOOD BIT OF THE TIME 4 SOME OF THE TIME 5 A LITTLE OF THE TIME 6 HARDLY ANY OF THE TIME 7 NONE OF THE TIME

How satisfied, happy, or pleased have you been with your personal life during past 2 weeks? Please choose one of the following options from

1 VERY DISSATISFIED, UNHAPPY MOST OF THE TIME 2 GENERALLY DISSATISFIED, UNHAPPY 3 SOMEWHAT DISSATISFIED, UNHAPPY 4 GENERALLY SATISFIED, PLEASED 5 SATISFIED MOST OF THE TIME, HAPPY 6 VERY SATISFIED MOST OF THE TIME, HAPPY 7 EXTREMELY SATISFIED, COULD NOT HAVE BEEN MORE HAPPY OR PLEASED

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Appendix M - Study Three Interview Schedule

Now that we have a good understanding of what adaptation involves, I would like to understand what the key aspects were that enabled patients who scored the highest on my adaptation questionnaire to do so. Likewise, I hope to understand what prevented the lower scorers from scoring more highly.

The interview should take about 30 minutes and will be recorded. Unless you have any questions then I am ready to begin when you are.

Establish rapport with participant

1) Can you tell me a bit about your history with IBD? (When were you diagnosed? Were you quickly diagnosed or was it a lengthy process?)

2) In your opinion what have been the major difficulties you’ve faced with respect to your illness in terms of dealing with it emotionally? Psychologically? Behaviourally?

Transition to questionnaire results

3) Based on your scores from the questionnaire study you took part in, you appeared to score particularly high/low on questions relating to what I call the ‘patient identity’. These questions were to do with aspects such as fear of the future with regards to your illness and difficulties in dealing with the illness emotionally and psychologically (Refer to specific questions from patient identity section and participants’ scores for particularly low/high scoring questions).

What do you feel are the main things that have prevented you from scoring lower on this scale/helped you score low on this scale? Do you feel the reasons for you score are more internal (rumination, psychological resilience) or external (support from family, healthcare team)?

4) Again, looking at your scores, you appeared to score particularly high/low on questions relating to what I call the ‘person identity’. These questions were to do with trying to live as normal a life as possible by doing things such as still keeping up with your hobbies and your friends.

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What, in your opinion, are the main things that have helped you reach this point/prevented you from scoring higher? How do you prevent yourself from letting this mind set slip? How do you manage your health while trying to live ‘normally’?

5) The third aspect I want to look into are the scores you gave in relation to the theme of hope in my questionnaire. These questions referred to your opinion on aspects such as whether you believed your doctor would ever find a medication that solves your problems or even whether you believe you may be cured one day.

Have you always felt this way? If not, then how do you think you developed this sense of hope? If you don’t feel hopeful, what is preventing you from doing so? Do past experiences shape your hope in relation to IBD? Fear of being wrong about cure?

6) And finally, I’d just like to touch on the score for the final theme of my questionnaire and that is acceptance. These questions referred to your opinion on aspects such as accepting that there is no cure for IBD and that you just have to keep moving forward with your life despite your illness.

How do you feel you have developed this sense of acceptance? Does this acceptance of your illness waver and, if so, under what circumstances? Why do you feel you cannot fully accept your illness (low scorers)?

That’s all the questions I have for you. I would quickly like to reiterate my appreciation for your participation and offer you the chance to ask any questions about any part of your involvement in the study. Should I have any further questions would it be OK to call you on this number? Thank you once again.

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Appendix N - University Ethics Committee Approval (Studies Two and Three)

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