abstractepubs.surrey.ac.uk/853893/1/manuscript 03.03.20.docx · web view2003/03/20 · this...

The impact of multiple chemical sensitivity on people’s social and occupational functioning; a systematic review of qualitative research studies

Abstract

Objective. Social and occupational functioning are important for psychological health. However, quantitative research has suggested that these areas can be adversely affected by multiple chemical sensitivity (MCS). This systematic review therefore sought to explore what qualitative research has suggested about how people with MCS perceive it to affect their social and occupational functioning.

Method. Journal articles were included if they were 1) peer reviewed 2) qualitative or mixed methods 3) published in English 4) reported qualitative findings relevant to the review. Studies were excluded if they were 1) descriptive only 2) primarily concerned with environmental intolerances other than chemicals or 3) focussed on specific populations such as veterans. Quality was assessed using the National Institute for Health and Care Excellence (NICE, 2018) qualitative quality criteria. However, quality was not used to determine eligibility for inclusion. Six databases (CINAHL, Medline, PsychArticles, PsychInfo, Scopus and Web of Science) were searched between the 24th of February 2019 and 2nd of March 2019.

Results. Having removed duplicates, database searches identified 388 potential articles. Thirteen of these articles were eligible for inclusion. Following review, no more articles were included from the reference lists of these studies. Meta-aggregation of the findings identified seven categories. These were synthesised into three themes; ‘limited access’, ‘loss & anxiety’ and ‘seeking engagement’.

Conclusions. The findings suggested that MCS limits some people’s social and occupational functioning. The results warrant further research, and, the development of prevention and intervention strategies. Studies predominantly recruited United States and Canadian females and had several limitations.

Keywords: multiple chemical sensitivity, chemical intolerance, quality of life, social, work, mental health

Introduction

Background

Multiple Chemical Sensitivity (MCS) is a chronic condition in which people report adverse reactions to low level chemical exposures [1]. Whilst 151 different symptoms have been associated with MCS; commonly cited reactions include migraines, cognitive impairment, breathing difficulties, nausea, heart palpitations, and skin problems [1–4]. Studies in the United States, Canada, Sweden, Denmark and Australia estimated the prevalence of MCS to range between 2% and 12.8% of the population [2–6].

MCS is a poorly demarcated, medically unexplained condition, for which there is no objective test, definitive name or internationally agreed case definition [7]. This is reflected in how the term MCS is often used interchangeably with the names ‘chemical intolerance’ and ‘environmental sensitivities’ [7]. The former is often employed when referring to mild forms of the condition, and, the latter when alluding to a broader range of environmental

of 25

sensitivities [7]. With regards to defining criteria, those proposed by Cullen (1987) and the MCS (1999) consensus criteria are most frequently cited [5]. According to the US MCS (1999) consensus criteria, MCS is defined as a chronic condition in which symptoms reproducibly, and, in multiple organ systems [8]. Symptoms are triggered by low level exposure to multiple, unrelated chemicals, and, improve or resolve when the incitant is removed [8]. The US MCS (1999) criteria were extended by Lacour et al., (2005) [8]. These criteria also require symptoms to have persisted for at least six months and for them to cause significant functional or lifestyle impairments. In addition, symptoms of the CNS (such as headache) must be present and associated with self-reported odour sensitivity. Equally, there should be at least one symptom in another organ system. Finally, Lacour et al., (2005) [8] contend that syndromes such as chronic fatigue and fibromyalgia should constitute exclusion criteria for MCS; unless they develop after the onset of MCS. Quantitative, cross-sectional survey studies have associated chemical intolerance and MCS with an increased risk of poor mental health compared to the general population [5,9–11]. This includes suicide, common mental health disorders and alcohol abuse [5,9–11]. That said, many of these studies involved small, self-reporting samples in which mental health diagnoses were not verified. Some studies also failed to control for potential covariates such as childhood abuse. Correcting for some of these methodological limitations, Johnson and Colman’s (2017) [5] study of 21,977 Canadian adults reported that MCS is associated with an increased risk of major depressive disorder (OR =2.37) and severe distress (OR = 2.60). Given that there has been a limited amount of longitudinal research, it has not been possible to draw definitive conclusions about the potential direction(s) of these associations. That said, the findings of several recent longitudinal studies suggested that negative affect is a risk factor for the development of MCS [12,13].

Cross-sectional and longitudinal studies have suggested that chemical intolerance is also associated with a reduced quality of life (QoL) [14]. In this respect, social and occupational functioning appear to be particularly affected [10,14–16]. Social and occupational functioning are defined here as a person’s relationships with others, and, their ability to engage in meaningful and productive activities in their environment. This includes work, leisure, and self-care activities in social, home, work and community contexts [17,18]. For example, large scale (N = 1098 - 1137) surveys of people in the US, Australia, Canada and Sweden reported that 24% - 60.7% of participants stated that they had lost workdays or their job because of perfumes in the workplace [2–4].

Similar findings have been reported in other medically unexplained conditions such as chronic fatigue syndrome (CFS), fibromyalgia (FM) and irritable bowel syndrome (IBS). Quantitative research suggests that these conditions are associated with an increased risk of depression, anxiety, unemployment and poorer quality of life compared to the general population [19–24]. Equally, qualitative research has consistently drawn attention to disrupted social activities, loss of significant relationships, impaired family roles and social isolation in this population [25,26]. Research suggests that these changes have a significant impact on people’s identity [27–30].

Social and occupational functioning are important for psychological wellbeing. This was evident in Paul and Moser's (2009) [31] meta-analysis of 87 longitudinal studies (N=87). This review reported that unemployment is casually associated with distress [31]. That said, the studies involved heterogenous populations and were not restricted to specified physical or psychological conditions. It follows that the relationship could have been mediated by a third

of 25

variable such as physical health. With regards to social support, quantitative studies have associated social support with resilience, subjective wellbeing and reduced healthcare utilisation [32–35].

Overall, the literature indicates that MCS is associated with limited social and occupational functioning. Equally, research suggests that social and occupational losses can cause distress. It follows that targeting these areas could be important when developing interventions designed to support the mental health of individuals with MCS. In an attempt to shed light on these areas this review explored the question; ‘how do people with MCS perceive the condition to affect their social and occupational functioning?’. The specific aims were 1) to synthesise the findings of relevant peer reviewed journal articles 2) to evaluate the quality of the evidence and 3) to discuss the implications of the findings. No similar reviews have previously been published. It was appropriate to review the qualitative research given the review question’s concern with people’s perceptions.

Method

Registration

The protocol was registered with the International Prospective Register of Systematic Reviews (PROSPERO; registration number: CRD42019120473).

Eligibility criteria

The qualitative findings of peer reviewed, qualitative and mixed methods research studies were included if they were 1) reported in English 2) provided insight into the impact of MCS on social and occupational functioning in adults and 3) were primarily concerned with MCS. Studies were excluded if they were 1) primarily concerned with forms of environmental intolerance other than chemical e.g. sick building syndrome, electromagnetic and infrasound hypersensitivity 2) predominantly focussed on a special population / illness such as gulf war syndrome in veterans and people known to have experienced chemical poisoning 3) single case reports, review papers or grey literature and 4) descriptive only i.e. not analysed for themes.

Search strategy

Title, abstract and keyword (when available) electronic database searches were performed between the 24th of February 2019 and the 2nd of March 2019. Databases searched were PsychInfo, PsychArticles, Medline, CINAHL, Scopus and Web of Science. Database limiters were applied to select for ‘peer reviewed journal articles published in English’ (when possible in each database). No date constraints were set.

The following search terms were used:

“Multiple chemical sensitivity” OR “environmental illness” OR “chemical intolerance” OR “sensory hyperreactivity” OR “idiopathic environmental intolerance” OR “chemical aids” OR “chemical hypersensitivity” OR “ecological illness”

ANDOccupation* OR work OR employment OR relation* OR social OR psychosocial OR “quality of life” OR “quality-of-life” OR QoL OR experience OR stigma OR depression OR anxiety OR wellbeing OR qualitative OR “mixed method*” OR hermeneutic* OR ethno*OR phenomenol* OR “grounded

of 25

theory” OR “content analysis” OR “thematic analysis” OR narrative* OR “discourse analysis” OR “focus group” OR interview* OR “participant observ*” OR theme*.

The reference lists of eligible articles were also reviewed to identify other potential studies.

Study selection process

The database searches identified 602 potentially eligible articles; 388 after removing duplicates) (figure 1). Title and abstract screening led to the exclusion of 359 articles. The full contents of the remaining 29 articles were reviewed and 16 papers excluded. The reference lists of the 13 eligible articles were reviewed for other potentially eligible studies. Having removed the duplicates, none of the 9 potential articles identified met the eligibility criteria. In total, 13 studies were included in the review [18,36–47]. The study selection process was primarily undertaken by author one (LD). LD initially screened the title and abstracts of all identified articles and excluded studies that were clearly ineligible. LD then read the remaining papers in full to assess their eligibility. During this second stage of screening, LD discussed any studies that she felt unsure whether to include with authors two and three until agreement was reached.

Figure 1; PRISMA diagram summarising the study selection process

of 25

Quality appraisal

Studies were appraised using the NICE (2018) [48] qualitative quality appraisal checklist. This checklist provides a means of rating overall article quality and facilitated study comparison. Overall quality was indicated symbolically as follows 1) ‘-‘ few / no checklist criteria met and the conclusions are likely / very likely to alter 2) ‘+’ some criteria met, and, when they have not been fulfilled or sufficiently described, the conclusions are unlikely to change 3) ‘++’ all / most of the criteria met, and, when they have not conclusions are unlikely to change [48]. LD assessed the quality of all studies. Authors two and three then undertook independent, and blind, quality assessments of three different studies each. Any discrepancies were discussed until agreement was reached. Krippendorff’s alpha was used to determine the inter-rater reliability for the six studies that were quality assessed by authors two and three.

Data extraction

LD undertook the extraction process. A selective extraction process was adopted whereby only findings relevant to the review question were extracted. A ‘finding’ was defined as a ‘theme or sub-theme’ reported in the article. Supporting quotes were also extracted to facilitate synthesis. Supporting quotes were the authors commentary as opposed to participant quotes.

Data synthesis

Data synthesis was undertaken by LD, and, reviewed by authors two and three. This was informed by the meta-aggregative procedure described by Lockwood, Munn and Poritt (2015) [49]. This method is suitable for aggregating and summarising material across studies according to the similarity of their findings and relevance to the review question [50]. Findings were first read and re-read. They were then grouped into categories based on their conceptual similarity using a process of constant comparative analysis [51]. When original articles included sub-themes, these were taken to be the unit of analysis. This was because sub-themes could be conceptually different. Equally, when a finding fitted more than one category, the reviewer allocated it to the category that captured its predominant meaning. Conceptually related categories were combined into groups of ‘synthesised findings’.

Results

Study characteristics

Included studies were published between 2000 and 2018 (table 1) They were predominantly (n=9) undertaken in the US and Canada [18,36,40–43,45–47]. Sample sizes ranged from 4 to 203. Seven studies used interviews [18,36,39,40,42–44], three questionnaires / surveys [37,38,41] and three employed several data collection methods as part of their ethnographic approach [45–47]. The method of analysis was unclear / unspecified in five studies [36,38,45–47]. Two used grounded theory, two qualitative content analysis, one phenomenological analysis, one thematic analysis, one textual analysis and one the method described by Morgan (1987) [52].

of 25

Table 1; table summarising the characteristics of the included studies

Authors (year of

publication) CountryStudy design /

method Research question / objectives Source(s) of recruitmentSample

sizeMethod of

analysis

Chircop & Keddy (2003) [36] Canada

Unstructured individual face-to-face interviews, case report

“To explore the experiences of 4 women who live with environmental illness” (p371)

An environmental health clinic 4 Not stated

Gibson et al. (2016) [40] US

Grounded theory, semi-structured telephone interviews

“To explore the needs of women with environmental sensitivities who are over 65 years; and how they believe that these needs will be met” (p1292)

Advertisements on the researcher’s website & in support organisation newsletters 21

Charmaz's (2006) constructivist grounded theory

Gibson et al.(2005) [41] US

Open ended questionnaire

“How having MCS would cause changes in one’s sense of identity and/or conceptualization of self (p505)

Invitations to participants in a prior study 203

Thematic analysis

Gibson et al. (2011) [42] US

Semi-structured telephone interviews “The impact of MCS on relationships” (p232)

Advertisements on the researcher’s website and on advocacy / educational group websites 26

Phenomenological (specific method not specified)

Koch et al. (2006) [43] US

Semi-structured telephone interviews

“To develop a better understanding of the experiences of people with MCS in their attempts to continue functioning in their homes, communities and work environments after the onset of symptoms” (p34)

A support group for people with MCS. 10

Grounded theory

Larsson & Martensson (2009) [44] Sweden

Face-to-face unstructured interviews

“To describe how individuals with hypersensitivity to odours and chemicals handle their problems” (p737)

From a population-based epidemiological study 8

Qualitative content analysis

Lipson (2001) [45]

US & Canada

Ethnography participant observation, informal & semi-structured interviews, media

To describe “self-care and symptom management” in MCS (p103).

Recruitment via a support group, MCS educators, environmental health clinics and snowball sampling

33 (interview

sample) Not stated

of 25

Lipson (2004) [46]

US & Canada

Ethnography; participant observation, informal & semi-structured interviews

To describe stigma and social relationships in the context of having a hidden disability that is medically contested” (p201).

Recruitment via a support group, MCS educators, from environmental health clinics and snowball sampling 36 Not stated

Lipson & Doiron (2006) [47]

US & Canada

Ethnography participant observation, informal & semi-structured interviews, media

Inferred; to describe the work issues of people with MCS.

Recruitment via a support group, MCS educators, environmental health clinics and snowball sampling

35 (interview

sample) Not stated

Peachey-Hill & Law (2000) [18] Canada

Semi-structured telephone interviews & self-report diary

To explore the impact of environmental illness on the person, occupation, environment and time use.

Self-help groups at local Allergy and Environmental Health Associations. 12

Textual analysis

Phillips & Rees (2018) [38]

US (60%), Australia (14%),Canada (10%), other (16%) Online survey

To examine how a broader cross-section of MCSers give meaning to their online patient-to-patient experiences across a range of sites and forums and how they self-report the impact of this engagement on their overall illness experience (p 219).

Adverts on MCS websites and Facebook pages. 186 Not stated

Skovbjerg et al.(2009) [39] Denmark

Focus group interviews

“To describe the impact of MCS on everyday life including lifestyle, social and occupational aspects and experiences with healthcare management” (p621-622)

Recruitment from a list of people registered for MCS with the Danish Research Centre for Chemical Sensitivities 12

Procedure specified by Morgan (1997)

Soderholm et al. (2011) [37] Sweden Questionnaire

“Our purpose was to illuminate how individuals living with sensory hyperreactivity (SHR) a form of odour intolerance’ experience its impact on accessibility, financial security, and social relationships” (p686).

Advertisements on the website 'the Networkfor Persons with Odour Intolerance' 12

Qualitative content analysis

of 25

Participant characteristics

Two studies recruited people with sensory hyperreactivity (SHR) and 11 studies included people with what appeared to be MCS (referred to in the studies as MCS and environmental illness / sensitivity) (table 2). Only three studies included participants who were reported to have been diagnosed by a physician [37,44,47]. This was unclear in the remaining studies. In studies that reported the relevant data (N=8), the participants mean ages ranged between 46 and 68.5 years [18,37,39–44]. Skovbjerg et al. (2009) [39] recruited an equal number of males and females. The participant samples in all other studies were predominantly female (58% - 100%). The duration of illness ranged from 1 to 51 years in the five studies that reported a range [39,42,45–47]. Only two studies reported comorbidities [37,40].

of 25

Table 2; table summarising the participant characteristicsAuthors (year)

Eligibility criteria

Presenting concern Diagnosis Age Gender Ethnicity

Employment status

Highest level of education Comorbidities

Illness duration

Illness severity

Chircop & Keddy (2003) [36] Not stated

Environmental illness; appears to be MCS Unclear*

Adult (ages not specified)

100% female Not stated Not stated Not stated Not stated Not stated Not stated

Gibson et al. (2016) [40] Not stated MCS Unclear*

100% > 65 years, mean 68.5)

100% female

90% Caucasian, 5% Latina, 5% other.

20% employed, 80% unemployed

61% not reported. 39% higher education degrees

43% electro hypersensitivity

Mean 23.3 years Not stated

Gibson et al. (2005) [41] Not stated MCS Unclear*

Mean 47 (SD=10.32)

88% female, 12% male

92% European American 5% native American, 3% other

23% employed 77%, unemployed Not stated Not stated

Mean 15 years (SD=13.32)

11% mild, 33% moderate, 38% severe, 17% disabling 17% ***

Gibson et al. (2011) [42]

MCS for a minimum of 5 years MCS Unclear*

Mean 59, (SD=12), range 31-82,

58% female, 42% male

92% white, 4% Latina, 4% African-American

38% employed, 62% unemployed

46% high school, technical or associate degree, 27% bachelor degree, 15% masters, 12% doctorate Not stated

Mean 23.5 years, range 5-51 years Not stated

Koch et al. (2006) [43]

Self-reported diagnosis of MCS, willing to be interviewed by phone MCS Unclear

Mean 52, range 38-73,

80% female, 20% male. Not stated

20% employed, 80% unemployed Not stated Not stated Not stated Not stated

Larsson & Martensson (2009) [44]

Participants with SHR; positive capsaicin provocation test screen SHR

Physician diagnosis

Mean 58, range 39-68

63% female, 37% male Not stated Not stated Not stated Not stated Not stated Not stated

Lipson & Doiron (2006) [47] Not stated MCS

Predominantly physician diagnosis Not stated

78% female, 22% male**

Not stated Not stated Not stated

Not stated1-21 years**

41% mild or moderate 59% severe / disabled***

Lipson Not stated MCS Unclear* Range 28- 79% female, 91% Caucasian, 33% 9% High school, Not stated 1->21 9% mild,

of 25

(2001) [45] 65 21% male**

6%, African American,33%, Asian American**

employed, 18% on leave, 12% retired, 39% disabled**

6% high school + certificate 2% some college, 27% BA / BS, 18% MA / MS, PhD or JD 6%** years**

27% moderate, 42%, severe 15%, disabled ***

Lipson (2004) [46] Not stated MCS Unclear* 28-65*

78% female, 22% male** 89% white**

39% employed**

50% college or graduate degrees ** Not stated

1 - >21 years)**

14% mild, 53% severely ill or disabled. ***

Peachey-Hill & Law (2000) [18] Not stated

Environmental sensitivity (appears to be MCS) Unclear*

Mean 46, range 28-57

100% female Not stated

67% unemployed

75% degree educated Not stated Not stated Not stated

Phillips & Rees (2018) [38] Not stated MCS Unclear*

60% aged 46-65

80% female, 19% male, 1% other Not stated Not stated Not stated Not stated Not stated Not stated

Skovbjerg et al. (2009) [39]

MCS for at least 1 year, employed or sick-leave / early retirement MCS Unclear

Mean 47.6 (SD 13.13), range 27-78,

50% female, 50% male Not stated

42% employed, 58% sick leave / early retirement Not stated Not stated 1-30 years

Mean CSS-SHR scores 52.8 for women and 51.0 for men

Soderholm et al. (2011) [37]

Diagnosis of SHR by a physician, 18 years +, resident in Sweden.

SHRPhysician diagnosis

Mean 46.8 (SD 12.88), range 23-64

100% female Not stated

8% employed, 25% disability pension, 58% sick listed, 8% student

17% senior high school, 83% university

25% other intolerances / allergies, 25% asthma, 25% arthritis, 8% fibromyalgia, 8% migraine, 25% none Not stated

CSS-SHR scores; range 44-55, mean 52.3 (SD 3.25)

* Authors did not indicate whether a physician made the diagnosis.** Figures given for the formal interview sample only*** Criteria used to assess the severity not specified

of 25

Quality review

There was good agreement in the quality ratings across the six studies that were reviewed by authors two and three (α-κ = 0.80, 95% CI = 0.68-0.91).

Overall, seven articles achieved a ‘-‘ rating, and, six a ‘+’ rating (table 3). No studies achieved a ‘++’ rating. The clarity of the study’s aims were rated as ‘mixed’ in eight articles [18,36,38,39,44–47]. This was because the research question was ambiguous, and / or, the authors did not sufficiently report the values underpinning their approach. The study’s design / methodology was rated as ‘defensible’ in three articles [37,40,43]. The remaining articles frequently failed to give a rationale for their design or report and justify eligibility criteria. Equally, it tended to be unclear whether the research team had developed the questionnaire and interview schedules in consultation with people outside of the research team.

Data collection was rated ‘appropriate’ in four studies [41,43,44,46]. All other studies were rated ‘not sure / inadequately reported’ [18,36–39,41,42,45,47]. This was due to a lack of detail regarding who interviewed participants, what questions were asked, who transcribed the material and / or how material was anonymised and stored during this process.

In relation to ‘trustworthiness’, the context was clear in three studies [37,40,45]. Common limitations in this area were insufficient reporting of participant characteristics and / or consideration of context bias. The rigour of the analysis was rated as ‘not sure / not reported’ in six studies [36,38,41,45–47]. Common reasons for this included a lack of clarity whether anyone other than the researcher was involved in the analysis, and how disagreements were resolved when there were multiple reviewers.

Conclusions were assessed to be ‘inadequate’ in ten articles [18,36,38–40,42,44–47] . This related to inadequate reporting of the study’s limitations. Ethics were insufficiently reported in all articles except that by Gibson et al. (2005) [41] and Larsson and Mårtensson (2009) [44]. Specifically, authors typically failed to state whether the study had been given ethics approval and / or did not discuss consent, anonymity or confidentiality.

of 25

Table 3: table summarising the quality review

Authors (year of

publication)

Theoretical approach Study design Data collection

Trustworthiness Analysis Ethics Overall rating

Qualitative approach

Clarity of

study’s aims

Defensibility / rigour of the design /

methodologyData

collectionResearcher’s

roleContextual description

Reliability of the

methods

Rigour of the analysis

Richness of the data

Reliability of the

analysis

How convincing

findings are

Relevance of findings to the aims Conclusions

Chircop & Keddy (2003) [36] Appropriate Mixed NS NS / IR Not described Unclear NS NS / NR Poor NS / NR NS Relevant Inadequate NS / NR -Gibson et al. (2016) [40] Appropriate Clear Defensible NS / IR Not described Clear NS Rigorous Poor NS / NR NS

Partially relevant Inadequate NS / NR -

Gibson et al. (2005) [41] Appropriate Clear NS Appropriate Unclear Unclear NS NS / NR Rich Reliable Convincing Relevant NS

Appropriate +

Gibson et al. (2011) [42] Appropriate Clear NS NS / IR Not described Unclear NS Rigorous Poor NS / NR NS Relevant Inadequate NS / NR -Koch et al. (2006) [43] Appropriate Clear Defensible Appropriate Not described Unclear NS Rigorous NS/NR Reliable Convincing Relevant NS NS / NR +Larsson & Martensson (2009) [44] Appropriate Mixed NS Appropriate Unclear Unclear NS

Not rigorous Rich NS / NR Convincing

Partially relevant Inadequate

Appropriate +

Lipson & Doiron (2006) [47] NS Mixed NS NS / IR Not described Unclear NS NS / NR Rich NS / NR Convincing Relevant Inadequate NS / NR -Lipson (2001) [45] Appropriate Mixed NS NS / IR Unclear Clear NS NS / NR Rich NS / NR Convincing Relevant Inadequate NS / NR -Lipson (2004) [46] Appropriate Mixed NS Appropriate Not described Unclear NS NS / NR Rich NS / NR Convincing Relevant Inadequate NS / NR -Peachey-Hill & Law (2000) [18] NS Mixed NS NS / IR Not described Unclear NS Rigorous Rich NS / NR Convincing Relevant Inadequate NS / NR +Phillips & Rees (2018) [38] Appropriate Mixed NS NS / IR Not described Unclear NS NS / NR Rich NS / NR Convincing Relevant Inadequate NS / NR -Skovbjerg, et al. (2009) [39] NS Mixed Indefensible NS / IR Not described Unclear NS Rigorous NS/NR NS / NR Convincing Relevant Inadequate NS / NR +Soderholm et al. (2011) [37] Appropriate Clear Defensible NS / IR Not described Clear NS Rigorous Rich NS / NR Convincing Relevant NS NS / NR +

NS = not sure, IR = inadequately reported, NR = not reported

of 25

Meta-aggregation findings

Meta-aggregation of the included studies (N=13) generated three synthesised findings (figure 2). These were 1) limited access 2) loss & anxiety and 3) seeking engagement. The three synthesised findings were derived from 53 article findings. These were synthesised into seven categories. These were the 1) the ubiquitous of chemicals 2) disbelief, incomprehension & accommodation 3) avoidance 4) social isolation 5) loss of occupation and income 6) supressing vs expressing needs and 7) searching.

Figure 2: diagram summarising the meta-aggregation of the findings

Synthesised finding Category Number of article findings

of 25

Limited access

Nine articles reported 21 findings concerned with participants ‘limited access’ to relationships and occupational contexts [18,36,37,39,42–46]. ‘Limited access’ consisted of three categories. These were the ‘the ubiquitous use of chemicals’, ‘disbelief, incomprehension & accommodation’ and ‘avoidance’. Overall, these categories suggested that people with MCS often avoided social and occupational contexts because of the widespread use of chemicals in these settings. This was in addition to people’s unwillingness to limit their chemical use.

Seven findings from six articles related to the ‘ubiquitous use of chemicals’ [18,36,37,39,42,43]. This finding captured participants perception that their access to places of productive and social activities was limited by the use chemicals in these areas. This was because they associated chemicals with adverse health effects. This was evident in Gibson et al.’s (2011, p234) [42] ‘primacy of spatiality’;

“A safe space is a precursor for face-to-face interaction and was described by informants as a constant challenge because of required precautions and difficulties in gaining access to venues where relationships are formed and maintained”.

Koch et al’s (2006, p35) [43] finding of ‘the struggle to survive in a chemical society’ highlighted just how pervasive participants experienced problematic chemicals to be;

“Participants in the study cited numerous environmental and chemical incitants that triggered their symptoms of MCS and interfered with their ability to carry out even the most fundamental activities of daily living. These included janitorial cleaning products, formaldehyde in upholstery and carpet, chemical in the interior of new cars, baby lotion, deodorant, soap, shampoo, hairspray, perfumes, colognes, aftershave, fluoride, incense, cigarette smoke, wood smoke (form fireplaces and stoves), glues and adhesives, mould, natural gas, laundry fumes, pesticide, fresheners, chemicals in clothing, fumes from photocopy machines and asphalt. Even books and mail can trigger symptoms of MCS because the pages absorb offensive fragrances and chemicals”.

Seven of the articles identified 10 findings concerned with the category of ‘disbelief, incomprehension and accommodation’ [18,36,37,42–44,46]. Findings in this category suggested that participants experienced other people (including friends, family, co-workers and employers) as lacking belief and understanding in MCS. They tended to relate this to MCS’s medically unexplained and hidden nature. This was described in Larsson & Martensson’s (2009, p741) [44] finding of a ‘lack of understanding from other people’.

“The feeling of being socially handicapped could be intensified by other people’s lack of understanding about the content of the experience……The inability to tolerate certain odours could seem peculiar and the interviewees were sometimes perceived as being whiners, or as being difficult”.

The findings suggested that participants frequently experienced other people (and organisations) as unwilling to make the adjustments needed for them to access social and occupational contexts. At times, the findings suggested that people could be cruel and harassing in response to requests for accommodations. This was described in Lipson’s (2004, p206-207) [46] finding ‘invisibility and misunderstanding; work or school’;

“In their former or current work or school settings, most participants had informed supervisors, teachers, or colleagues about their problems with specific substances, mainly fragrances. Informing ranged from mentioning it to requesting accommodations such as a

of 25

different office or fragrance-free environment. responses ranged from cooperation and support to frank cruelty……. .Hostility and assault from coworkers and minimal support from supervisors were continuing problems for Carl”.

That said, Soderholm et al’s (2011) [37] finding ‘being dependent on others; alluded to a more positive experience of support.

Four findings in four articles suggested that people with MCS frequently avoided social and occupational contexts [39,43–45]. The reason for this was chemical use in these environments combined with insufficient accommodation of participants needs.

Loss and anxiety

Limited access to social and occupational contexts appeared to result in ‘loss and anxiety’. Eight articles reported 13 findings that described participants experiences of losing relationships, jobs and other meaningful activities [18,36,37,39–41,43,47]. They related this to anxiety about a loss of income and social support. These experiences were captured in the categories of ‘social isolation’ and ‘loss of occupation and income’.

Social isolation was reported to be a problem for some participants in four findings across four articles [36,39,41,43]. Chircop and Keddy’s (2003, p378) [36] finding ‘seeking refuge’ described this experience.

“The only way that I really feel well physically is if I don’t feel well emotionally and this means being away from everybody”…. . Women who are forced into isolation for physical reasons in order to survive distance themselves more and more from social interactions and will lose important social contacts, resulting in psychological isolation”.

‘Loss of occupation and anxiety’ was alluded to in nine findings across seven articles [18,36,37,39–41,47]. The findings in this category drew attention to the loss of meaningful and productive activities from participants lives; particularly in relation to work. This was evident in Lipson and Doiron’s (2006, p574) [47] finding ‘getting sick at work’.

“Most eventually had to quit their jobs and many had become too sick to work at all”.

The findings suggested however that some participants had managed to retain employment when the needs of their MCS was accommodated. This was indicated in Skovbjerg et al’s (2009, p624) [39] finding ‘adjusting occupational conditions’.

“Those informants who were still working reported having taken precautions against exposure at their place of work, such as asking colleagues to refrain from using fragrance products, or using the phone or e-mails instead of going to meetings”.

Anxiety and frustration about future employment, loss of income and use of retirement savings was reported in six studies [18,37,39–41,47]. Soderholm et al’s (2011, p697) [37] finding of ‘experiencing insecurity’ described this experience.

“Since it was difficult to find a workplace free of scents, they also had a reduced income due to being sick listed or unemployed, and they experienced insecurity regarding their work situation”.

Seeking engagement

The synthesised finding of ‘seeking engagement’ related to the strategies participants used to try and engage socially and occupationally in response to their losses. Findings related to this

of 25

were evident in 19 findings across eight articles [18,37,38,40,41,44,45,47]. This synthesised finding included two categories; ‘suppressing vs expressing needs’ and ‘searching’.

Five articles reported nine findings concerned with ‘suppressing vs expressing needs’ [37,41,44,45,47]. Findings in this category pertained to participants attempts to social and occupational contexts by either suppressing their needs, or, requesting accommodations. This was evident in Larsson and Martensson’s (2009, p741-742) [44] finding ‘disparagement of one’s own personal experience’ and Lipson’s (2001, p113) [45] ‘emotional self-care; making choices and meaning’.

“One way that the interviewees managed their symptoms was to disparage them, both to themselves and to others”.

“Paul, whose biggest “loss” is his social isolation, described how he chooses to take a risk to be with people”).

The findings suggested that participants feared both suppressing and expressing their needs. The former was related to adverse health effects and the latter a threat to relationships. The material suggested that one solution to this dilemma was to look for alternative activities and relationships in contexts where the participants needs for a chemical free environment were accommodated without the need to ask. Many studies also mentioned participants seeking occupation and relationships online. Frequently this involved supporting and advocating for other people with MCS; if electro-sensitivity did not preclude this. However, Phillip & Rees (2018, p228) [38] finding ‘limitations’ highlighted that online forums did not always compensate for participants pre-MCS relationships and activities and could heighten participants sense of isolation.

“Thus, the stories of survival and friendship must be counterbalanced with those instances where people have experienced disappointment, heightened isolation, and a more acute sense of exclusion after engaging with the broader patient community online”.

Discussion

Summary of the findings

This review explored how adults perceive MCS to affect their social and occupational functioning. Overall, just under three quarters of the articles reported limited access to social and occupational contexts. Limited access was frequently related to the ‘ubiquitous use of chemicals’ and experiences of ‘disbelief, incomprehension and a lack of accommodation’. Specifically, participants experienced chemicals as triggering adverse physical symptoms. They therefore appeared to avoid social and occupational settings because of the widespread use of chemicals in these contexts; combined with others unwillingness to accommodate them. The latter tended to be associated with other people’s lack of understanding and belief in MCS given its medically unexplained and invisible nature. Approximately three quarters of the articles suggested that ‘limited access’ led to social and occupational losses. Some studies related loss of work to financial insecurity and anxiety. Approximately three-quarters of the included articles suggested that participants sought to improve their social and occupational functioning by suppressing their needs, asking for accommodations and seeking new forms of occupation and relationships. The latter was often in relation to the online MCS community. Whilst there appeared to be significant consistency between studies, the findings should be interpreted with caution given the limited quality of the included studies and limitations of the review (see limitations).

of 25

Relationship of the findings to the literature

Limited access

Limited access was related to the ‘ubiquity of chemicals, avoidance and disbelief, incomprehension and accommodation’. The ‘ubiquity of chemicals’ highlighted participants perceptions of how chemicals triggered health problems. Research suggests that air pollution from sources such as cars and industry is detrimental to health [53,54]. However, people with MCS frequently report fragrances to be problematic. The potential for fragrances to trigger adverse health effects when inhaled is starting to receive more attention and researchers have mixed views in this regard [55–58]. Further research is therefore required.

Participants avoidance of social and occupational contexts is supported by some quantitative, cross sectional survey studies of people with MCS. For example, three large scale (N = 1098 - 1137) studies undertaken in the US, Australia and Sweden reported that between 41.7% and 77.5% of people with MCS reported difficulties accessing places because of fragrance use [2–4]. Similarly, the category of ‘disbelief, incomprehension and accommodation’ is supported by Gibson et al’s (1996) [59] cross-sectional survey of 305 people with MCS. However, the percentage of participants reporting these kinds of responses from other people was lower than expected based on this review. Specifically, Gibson et al. (1996) [59] reported that 61% of participants reported being in a romantic relationship, and, 82% described their partner as being ‘somewhat or very supportive’. Beyond Gibson et al’s (1996, 1998) [59,60] studies, there is a lack of quantitative research concerned with the relational experiences of people with MCS.

That people experience stigma and disbelief finds support in studies of people with other medically unexplained conditions [26,61–63]. For example, a meta-synthesis of 20 qualitative studies reported that some people with CFS perceived their most distressing experiences to be in relation to family and work colleagues who questioned the legitimacy of their illness [63]. These findings are important because evidence suggests that unsupportive relationships are associated with depression and suicidal ideation in people with medically unexplained conditions [64].

Loss and anxiety

People’s experiences of ‘social’ isolation has received mixed support from quantitative studies of people with chemical sensitivities. Ternesten-Hasséus et al's (2007) [16] longitudinal study of 17 people with sensory hyperreactivity reported higher levels of social isolation than referents. However, this finding was not replicated in Kristofferzon and Ternesten-Hasséus's (2013) [15] cross-sectional study of 115 people with MCS. This difference could reflect the inclusion of people with slightly different conditions. In contrast, quantitative findings have been more consistent in relation to a loss of occupational activities. Cross-sectional surveys in the US, Australia and Sweden reported that between 24% and 60.7% of people with MCS lost their job, or workdays, in the previous year due to fragrances in the workplace [2–4]. The veracity of these findings need to be treated with caution because these studies relied on self-report.

These findings are further supported by studies of people with other medically unexplained conditions. Qualitative studies have consistently reported losses of social relationships and occupational activities [22,26,63,65]. Equally, large scale quantitative studies in England, the

of 25

Netherlands and Canada have provided evidence that medically unexplained conditions are associated with an increased risk of mood disorders [19,20,23].

Seeking access

Some of the ways that people sought to cope with MCS have been reported in studies of people with other medically unexplained conditions. For example, the ‘suppression vs expression of needs’ was evident in a meta-synthesis of 20 studies of people with CFS. This reported that people tended to withdraw and to conceal their illness in response to repeated unhelpful interactions [63].

Overall, the findings reported here can be understood in relation to the literature regarding identity and coping. Qualitative research suggests that biographical disruptions (particularly in the domains of work and social life) are common in medically unexplained conditions [27–30]. Furthermore, studies suggest that these disruptions, combined with others scepticism in the context of having a medically unexplained condition, can precipitate an identity crisis [28,29]. It follows that part of coping with a medically unexplained condition may involve a process of identity transformation whereby some parts of an old identity are given up, others re-defined and new elements added [28]. As reported here, this may involve a process of giving up previously valued roles and developing new ones; or engaging with them in a different way [28].

The way that people with MCS cope with the condition is important given the relationship between coping strategies and physical and psychological wellbeing [66,67]. In this respect, Wallander et al’s (1989) [68] disability-stress-coping model is relevant. According to this theory, coping is mediated by the balance between risk and resistance factors. It follows that supportive, accommodating relationships, and, sustained social and occupational functioning could be considered resistance factors that are associated with better coping and less stress. More research is required to better understand identity transformation in people with MCS and the efficacy of different coping approaches.

Limitations

The findings need to be interpreted with caution given limitations of the included studies and the review process. With regards to the review process, study selection, data extraction, the synthesis of findings and quality reviews were primarily undertaken by LD. This could have biased the findings. Equally, the choice of eligibility criteria could have limited the review process. For example, selecting only peer-reviewed journal articles was subject to publication bias. Furthermore, the inclusion of studies involving people with MCS, chemical intolerance and SHR meant that the review could have included studies of inherently different conditions. Equally, studies were included if diagnoses were not verified by a physician. Finally, the aggregation of the themes across studies may have detracted from the complexity presented in the primary articles.

With respect to the included studies, six of the 13 included studies involved two different authors. The overall findings might therefore be biased towards the perspectives of a limited number of researchers. Across studies, participants were predominantly middle-to-older aged, Caucasian, unemployed women; recruited from clinics and support groups in the US and Canada. The material may therefore reflect the perspectives of a more severely ill sub-set of the MCS population within a North American context. Equally, studies did not consider how experiences differed depending on factors such as comorbidities, or, the duration and severity

of 25

of the illness. Overall, studies were generally; lacked rigour in design, analysis and ethical reporting.

Implications

The findings have several implications. Firstly, more research is required to address the limitations of the studies identified in this review. Secondly, the findings suggest that there is a need to support the wellbeing of people affected by MCS. This should be informed by a biopsychosocial understanding of the condition which has yet to be established. This is because a more psychological understanding in terms of stigma, adjustment and phobic avoidance implies a need for a greater emphasis on psychological intervention. Evidence for a biological aetiology could warrant polices such as fragrance-free workplaces and education programmes for employers, organisations and the public.

Conclusions

In conclusion, this review sought to describe the impact of MCS on social and occupational functioning through a synthesis of qualitative research. The findings suggest that MCS limits some people’s social and occupational functioning, and, that this has a deleterious impact on some individuals psychological wellbeing. It is recommended that further research be undertaken to address the methodological limitations of the articles included in this review, and, the related gaps in the literature. It is also recommended that appropriate support be put in place for people affected by MCS.

Acknowledgements; Sussex Partnership NHS Foundation Trust Swandean , Arundel Rd, Worthing BN13 3EP

Declarations of interest: none.

Funding sources. This review not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.

of 25

References

[1] A.S. Labarge, R.J. Mccaffrey, Multiple chemical sensitivity: A review of the theoretical and research literature, Neuropsychol. Rev. 10 (2000) 183–211. doi:10.1023/A:1026460726965.

[2] A. Steinemann, Prevalence and effects of multiple chemical sensitivities in Australia, Prev. Med. Reports. 10 (2018) 191–194. doi:10.1016/j.pmedr.2018.03.007.

[3] A. Steinemann, National Prevalence and Effects of Multiple Chemical Sensitivities, J. Occup. Environ. Med. 60 (2018) e152–e156. doi:10.1097/JOM.0000000000001272.

[4] A. Steinemann, Chemical sensitivity, asthma, and effects from fragranced consumer products: national population study in Sweden, Air Qual. Atmos. Heal. 12 (2019) 129–136. doi:10.1007/s11869-018-0640-y.

[5] D. Johnson, I. Colman, The association between multiple chemical sensitivity and mental illness: Evidence from a nationally representative sample of Canadians, J. Psychosom. Res. 99 (2017) 40–44. doi:10.1016/j.jpsychores.2017.06.002.

[6] M.W. Petersen, A. Schröder, T. Jørgensen, E. Ørnbøl, T.M. Dantoft, M. Eliasen, T.W. Carstensen, L. Falgaard Eplov, P. Fink, Prevalence of functional somatic syndromes and bodily distress syndrome in the Danish population: the DanFunD study, Scand. J. Public Health. (2019) 1–10. doi:10.1177/1403494819868592.

[7] T.M. Dantoft, L. Andersson, S. Nordin, S. Skovbjerg, Chemical intolerance., Curr. Rheumatol. Rev. 11 (2015) 167–184. http://search.ebscohost.com/login.aspx?direct=true&AuthType=ip,shib&db=cmedm&AN=26088215&site=ehost-live&custid=s4121186.

[8] M. Lacour, T. Zunder, K. Schmidtke, P. Vaith, C. Scheidt, Multiple chemical sensitivity syndrome (MCS)--suggestions for an extension of the U.S. MCS-case definition., Int. J. Hyg. Environ. Health. 208 (2005) 141–151. http://search.ebscohost.com/login.aspx?direct=true&AuthType=ip,shib&db=cmedm&AN=15971853&site=ehost-live&custid=s4121186.

[9] K. Azuma, I. Uchiyama, T. Katoh, H. Ogata, K. Arashidani, N. Kunugita, Prevalence and Characteristics of Chemical Intolerance: A Japanese Population-Based Study., Arch. Environ. Occup. Health. 70 (2015) 341–353. doi:10.1080/19338244.2014.926855.

[10] D.A. Katerndahl, I.R. Bell, R.F. Palmer, C.S. Miller, Chemical intolerance in primary care settings: Prevalence, comorbidity, and outcomes, Ann. Fam. Med. 10 (2012) 357–365. doi:10.1370/afm.1346.

[11] A. Dietel, L. Jordan, T. Mühlinghaus, T.F. Eikmann, C.E.W. Herr, D. Nowak, F. Pedrosa Gil, K. Podoll, G.A. Wiesmüller, D. Eis, [Psychiatric disorders of environmental outpatients--results of the standardized psychiatric interview (CIDI) from the German multi-center study on Multiple Chemical Sensitivity (MCS)], Psychother. Psychosom. Med. Psychol. 56 (2006) 162–171. doi:10.1055/s-2005-915346.

[12] S. Skovbjerg, K. Bang, J. Frost, A. Linneberg, R. Zachariae, J. Elberling, K.B.

of 25

Christensen, J.F. Ebstrup, A. Linneberg, R. Zachariae, J. Elberling, Negative affect is associated with development and persistence of chemical intolerance: A prospective population-based study, J. Psychosom. Res. 78 (2015) 509–514. doi:10.1016/j.jpsychores.2015.02.005.

[13] K. Azuma, I. Uchiyama, N. Kunugita, Factors affecting self-reported chemical intolerance: A five-year follow-up study in Japan., J. Psychosom. Res. 118 (2019) 1–8. doi:10.1016/j.jpsychores.2019.01.001.

[14] P.R. Gibson, V.M. Vogel, Sickness-related dysfunction in persons with self-reported multiple chemical sensitivity at four levels of severity, J. Clin. Nurs. 18 (2009) 72–81. doi:10.1111/j.1365-2702.2008.02439.x.

[15] M.-L. Kristofferzon, E. Ternesten-Hasséus, A study of two generic health-related quality of life questionnaires--Nottingham Health Profile and Short-Form 36 Health Survey--and of coping in patients with sensory hyperreactivity., Health Qual. Life Outcomes. 11 (2013) 182. doi:10.1186/1477-7525-11-182.

[16] E. Ternesten-Hasséus, O. Lowhagen, E. Millqvist, Quality of life and capsaicin sensitivity in patients with airway symptoms induced by chemicals and scents: a longitudinal study., Environ. Health Perspect. 115 (2007) 425–429. http://search.ebscohost.com/login.aspx?direct=true&AuthType=ip,shib&db=cmedm&AN=17431493&site=ehost-live&custid=s4121186.

[17] M. Bosc, A. Dubini, V. Polin, Development and validation of a social functioning scale, the social adaptation self-evaluation scale, Eur. Neuropsychopharmacol. 7 (1997) S57–S70. doi:10.1016/S0924-977X(97)00420-3.

[18] C. Peachey-Hill, M. Law, Impact of environmental sensitivity on occupational performance, Can. J. Occup. Ther. 67 (2000) 304–313. doi:10.1177/000841740006700503.

[19] K.L. Chou, Chronic fatigue and affective disorders in older adults: Evidence from the 2007 British National Psychiatric Morbidity Survey, J. Affect. Disord. 145 (2013) 331–335. doi:10.1016/j.jad.2012.08.012.

[20] E. Fuller-Thomson, J. Nimigon-Young, S. Brennenstuhl, Individuals with fibromyalgia and depression: Findings from a nationally representative Canadian survey, Rheumatol. Int. 32 (2012) 853–862. doi:10.1007/s00296-010-1713-x.

[21] A. Mykletun, F. Jacka, L. Williams, J. Pasco, M. Henry, G.C. Nicholson, M.A. Kotowicz, M. Berk, Prevalence of mood and anxiety disorder in self reported irritable bowel syndrome (IBS). An epidemiological population based study of women, BMC Gastroenterol. 10 (2010). doi:10.1186/1471-230X-10-88.

[22] S.M. Collin, E. Crawley, M.T. May, J.A.C. Sterne, W. Hollingworth, The impact of CFS/ME on employment and productivity in the UK: A cross-sectional study based on the CFS/ME national outcomes database, BMC Health Serv. Res. 11 (2011) 1995–1998. doi:10.1186/1472-6963-11-217.

[23] K.A.M. Janssens, W.L. Zijlema, M.L. Joustra, J.G.M. Rosmalen, Mood and anxiety disorders in chronic fatigue syndrome, fibromyalgia, and irritable bowel syndrome: Results from the LifeLines cohort study, Psychosom. Med. 77 (2015) 449–457. doi:10.1097/PSY.0000000000000161.

of 25

[24] M.R. Lavergne, D.C. Cole, K. Kerr, L.M. Marshall, Functional impairment in chronic fatigue syndrome, fibromyalgia, and multiple chemical sensitivity., Can. Fam. Physician. 56 (2010) e57–e65. http://search.ebscohost.com/login.aspx?direct=true&AuthType=ip,shib&db=cmedm&AN=20154232&site=ehost-live&custid=s4121186.

[25] J. Sim, S. Madden, Illness experience in fibromyalgia syndrome: A metasynthesis of qualitative studies, Soc. Sci. Med. 67 (2008) 57–67. doi:10.1016/j.socscimed.2008.03.003.

[26] F. Wuytack, P. Miller, The lived experience of fibromyalgia in female patients, a phenomenological study, Chiropr. Man. Ther. 19 (2011) 22. doi:10.1186/2045-709X-19-22.

[27] M.A. Arroll, A. Howard, “The letting go, the building up, [and] the gradual process of rebuilding”: Identity change and post-traumatic growth in myalgic encephalomyelitis/chronic fatigue syndrome, Psychol. Heal. 28 (2013) 302–318. doi:10.1080/08870446.2012.721882.

[28] Asbring P., Chronic illness – A disruption in life: Identity-transformation among women with chronic fatigue syndrome and fibromyalgia, J. Adv. Nurs. 34 (2001) 312–319.

[29] A. Dickson, C. Knussen, P. Flowers, ‘That was my old life ; it's almost like a past-life now’: Identity crisis , loss and adjustment amongst people living with Chronic Fatigue Syndrome, 23 Psychol. heal (2008) 459-476. doi:10.1080/08870440701757393.

[30] V.R. Anderson, L.A. Jason, L.E. Hlavaty, N. Porter, J. Cudia, A review and meta-synthesis of qualitative studies on Myalgic Encephalomyelitis/chronic fatigue syndrome, Patient Educ. Couns. 86 (2012) 147–155. doi:10.1016/j.pec.2011.04.016.

[31] K.I. Paul, K. Moser, Unemployment impairs mental health: Meta-analyses, J. Vocat. Behav. 74 (2009) 264–282. doi:10.1016/j.jvb.2009.01.001.

[32] P. Dolan, T. Peasgood, M. White, Do we really know what makes us happy? A review of the economic literature on the factors associated with subjective well-being, J. Econ. Psychol. 29 (2008) 94–122. doi:10.1016/j.joep.2007.09.001.

[33] L. Hölzel, M. Härter, C. Reese, L. Kriston, Risk factors for chronic depression - A systematic review, J. Affect. Disord. 129 (2011) 1–13. doi:10.1016/j.jad.2010.03.025.

[34] D.E. Stewart, T. Yuen, A Systematic Review of Resilience in the Physically Ill, Psychosomatics. 52 (2011) 199–209. doi:10.1016/j.psym.2011.01.036.

[35] H. Tough, J. Siegrist, C. Fekete, Social relationships, mental health and wellbeing in physical disability: A systematic review, BMC Public Health. 17 (2017) 1–18. doi:10.1016/0039-6028(95)00741-5.

[36] A. Chircop, B. Keddy, Women living with environmental illness, Health Care Women Int. 24 (2003) 371–383. doi:10.1080/07399330303987.

[37] A. Soderholm, A. Soderberg, S. Nordin, The experience of living with sensory hyperreactivity-accessibility, financial security, and social relationships, Health Care Women Int. 32 (2011) 686–707. doi:10.1080/07399332.2011.585727.

[38] T. Phillips, T. Rees, (In)Visibility Online: The Benefits of Online Patient Forums for

of 25

People with a Hidden Illness: The Case of Multiple Chemical Sensitivity (MCS), Med. Anthropol. Q. 32 (2018) 214–232. doi:10.1111/maq.12397.

[39] S. Skovbjerg, J. Elberling, S. Brorson, A. Rasmussen, J.D. Johansen, Impact of self-reported multiple chemical sensitivity on everyday life: A qualitative study, Scand. J. Public Health. 37 (2009) 621–626. doi:10.1177/1403494809105430.

[40] P.R. Gibson, M.C. Horan, J. Billy, Women growing older with environmental sensitivities: A grounded theory model of meeting one’s needs, Health Care Women Int. 37 (2016) 1289–1303. doi:10.1080/07399332.2016.1191495.

[41] P.R. Gibson, E. Placek, J. Lane, S.O. Brohimer, A.C. E. Lovelace, Disability-induced identity changes in persons with multiple chemical sensitivity, Qual. Health Res. 15 (2005) 502–524. doi:10.1177/1049732304271960.

[42] P.R. Gibson, L.G. Sledd, W.H. Mcenroe, A.P. Vos, Isolation and lack of access in multiple chemical sensitivity: A qualitative study, Nurs. Heal. Sci. 13 (2011) 232–237. doi:10.1111/j.1442-2018.2011.00606.x.

[43] L. Koch, C. Vierstra, K. Penix, A Qualitative Investigation of the Psychosocial Impact of Multiple Chemical Sensitivity, J. Appl. Rehabil. Couns. 37 (2006) 33–40. http://search.ebscohost.com/login.aspx?direct=true&AuthType=ip,shib&db=psyh&AN=2006-20210-004&site=ehost-live&custid=s4121186.

[44] C. Larsson, L. Mårtensson, Experiences of problems in individuals with hypersensitivity to odours and chemicals, J. Clin. Nurs. 18 (2009) 737–744. doi:10.1111/j.1365-2702.2008.02599.x.

[45] J.G. Lipson, We are the canaries: self-care in multiple chemical sensitivity sufferers., Qual. Health Res. 11 (2001) 103–116.

[46] J.G. Lipson, Multiple Chemical Sensitivities: Stigma and Social Experiences, Med. Anthropol. Q. 18 (2004) 200–213. doi:10.1525/maq.2004.18.2.200.

[47] J.G. Lipson, N. Doiron, Environmental issues and work: Women with multiple chemical sensitivities, Health Care Women Int. 27 (2006) 571–584. doi:10.1080/07399330600803709.

[48] NICE, Appendix H. Quality apppraisal checklist - qualitative studies, 2018. https://www.nice.org.uk/process/pmg4/chapter/appendix-h-quality-appraisal-checklist-qualitative-studies (accessed 4th March 2019)

[49] K. Lockwood, C., Munn, Z.Porritt, Qualitative research synthesis: methodological guidance for systematic reviewers utilizing meta-aggregation, Int. J. Evid. Based. Healthc. 13 (2015) 179–187.

[50] J. Noyes, S. Lewin Chapter 6: Supplemental Guidance on Selecting a Method of Qualitative Evidence Synthesis, and Integrating Qualitative Evidence with Cochrane Intervention Reviews, in: J. Noyes, A. Booth, K. Hannes, A. Harden, J. Harris, S. Lewin, C. Lockwood (Eds), Supplementary Guidance for Inclusion of Qualitative Research in Cochrane Systematic Reviews of Interventions. Version 1 (updated August 2011). Cochrane Collaboration Qualitative Methods Group, 2011, pp.1-22. Available from URL http://cqrmg.cochrane.org/supplemental-handbook-guidance.

[51] R. Whittemore, K. Knafl, The integrative review : updated methodology, Journal of

of 25

advanced nursing, 52 (2005) 546–553.

[52] D.L. Morgan, Focus groups as qualitative research, second ed., Sage, California, 1997.

[53] Worold Health Organisatio (WHO), Household air pollution and health, https://www.who.int/en/news-room/fact-sheets/detail/household-air-pollution-and-health (accessed 14 January 2020)

[54] World Health Organisation (WHO), Ambient (outdoor) air quality and health, 2018. https://www.who.int/en/news-room/fact-sheets/detail/ambient-(outdoor)-air-quality-and-health(accessed 14 January 2020)

[55] P. Wolkoff, G.D. Nielsen, Effects by inhalation of abundant fragrances in indoor air – An overview, Environ. Int. 101 (2017) 96–107. doi:10.1016/j.envint.2017.01.013.

[56] D.A. Basketter, J. Huggard, I. Kimber, Fragrance inhalation and adverse health effects: The question of causation, Regul. Toxicol. Pharmacol. 104 (2019) 151–156. doi:10.1016/j.yrtph.2019.03.011.

[57] A. Steinemann, Ten questions concerning air fresheners and indoor built environments, Build. Environ. 111 (2017) 279–284. doi:10.1016/j.buildenv.2016.11.009.

[58] P. Wang, H. Wang, R. Zhang, S. Yu, Perfume-Related Inhalation Allergy Review, J. Med. Chem. Toxicol. 3 (2018) 37–41. doi:10.15436/2575-808X.18.1993.

[59] P.R. Gibson, J. Cheavens, M.L. Warren, Chemical sensitivity/chemical injury and life disruption, Women Ther. 19 (1996) 63–79. doi:10.1300/J015v19n02_06.

[60] P.R. Gibson, J. Cheavens, M.L. Warren, Social support in persons with self-reported sensitivity to chemicals., Res. Nurs. Health. 21 (1998) 103–115. http://search.ebscohost.com/login.aspx?direct=true&AuthType=ip,shib&db=c8h&AN=107279313&site=ehost-live&custid=s4121186.

[61] P. Asbring, A. Närvänen, Syndrome and Fibromyalgia, Qual. Health Res. 12 (2002) 148–160. doi:10.1177/104973230201200202.

[62] A. Dickson, C. Knussen, P. Flowers, Stigma and the delegitimation experience: An interpretative phenomenological analysis of people living with chronic fatigue syndrome, Psychol. Heal. 22 (2007) 851–867. doi:10.1080/14768320600976224.

[63] L. Larun, K. Malterud, Identity and coping experiences in Chronic Fatigue Syndrome: A synthesis of qualitative studies, Patient Educ. Couns. 69 (2007) 20–28. doi:10.1016/j.pec.2007.06.008.

[64] S.L. McManimen, L.A. Jason, D. McClellan, J. Stoothoff, L.A. Jason, Effects of unsupportive social interactions, stigma, and symptoms on patients with myalgic encephalomyelitis and chronic fatigue syndrome, J. Community Psychol. 46 (2018) 959–971. doi:10.1002/jcop.21984.

[65] M.M. Cunningham, C. Jillings, Individuals' Descriptions of Living With Fibromyalgia, J Clin Nurs, 15 (2006) 258–273.

of 25

[66] J.A. Penley, J. Tomaka, J.S. Wiebe, The association of coping to physical and psychological health outcomes: a meta-analytic review., J. Behav. Med. 25 (2002) 551–603. http://www.ncbi.nlm.nih.gov/pubmed/12462958.

[67] L. Finkelstein-Fox, C.L. Park, Control-coping goodness-of-fit and chronic illness: a systematic review of the literature, Health Psychol. Rev. 7199 (2018). 1-26. doi:10.1080/17437199.2018.1560229.

[68] L.L. Mullins, E.S. Molzon, K.I. Suorsa, A.P. Tackett, A.L.H. Pai, J.M. Chaney, Models of Resilience: Developing Psychosocial Interventions for Parents of Children with Chronic Health Conditions, Fam. Relat. 64 (2015) 176–189. doi:10.1111/fare.12104.

of 25

abstractepubs.surrey.ac.uk/853893/1/manuscript 03.03.20.docx · web view2003/03/20 · this...

Documents