CHRONICITY OF STROKE

SURVIVORS RECOVERY OF LIFE

MSC MEDICAL ANTHROPOLOGY AND SOCIOLOGY

Author: Michaela Hubmann

Student Number: 10601295

Supervisor: Dr Kristine Krause

2nd Reader: Dr Anja Hiddinga

Submission Date: 22/07/2014

1

ABSTRACT

For centuries the biomedical acute-chronic disease classification has dominated the

everyday public discourse of illness, as well as the representation of the health transition.

This thesis aims to understand how this binary shapes stroke survivors’ experiences with

their after-care provision; and to what extent survivors’ chronicity, their resistance

tactics as well as the institutionalised care and therapy provision strategies are

constituted by the acute-chronic distinction. The survivors illness experiences are

fundamentally shaped by structural factors; hence the chronicity of stroke is as much a

technical, economic and political fact as it is a medical one. Rather than investigating

chronicity from a biomedical perspective, the Chronicity of Life itself, with its constant

mundane and major disruptions, has to be taken as the point of departure in order to

understand stroke survivors navigation tactics which they employ on the way towards

their personal recovery.

2

TABLE OF CONTENTS

Abstract ............................................................................................................................................................... 1

Acknowledgement .......................................................................................................................................................... 4

Chapter 1: Introduction ............................................................................................................................................... 5

Chapter 2: Context .......................................................................................................................................................... 9

2.1 Medical Definitions and Treatment Options .............................................................................................. 9

2.2 Principles and Efficacy of Stroke Rehabilitation .................................................................................... 10

2.3 Critique on the current Rehabilitation Approach .................................................................................. 11

2.4 Acute Landscape ................................................................................................................................................. 12

2.5 Sub-Acute or Rehabilitation Landscape .................................................................................................... 13

2.6 Chronic Landscape ............................................................................................................................................. 14

2.7 Long-Term Care in Context ............................................................................................................................. 14

2.8 Summary ................................................................................................................................................................ 16

Chapter 3: Theoretical Framework........................................................................................................ 18

3.1 Chronicity of Life ................................................................................................................................................. 18

3.2 Fluid Concepts of Acute and Chronic: The Dichotomy ........................................................................ 19

3.3 Anthropological Critique on Chronicity .................................................................................................... 20

3.4 (Counter) Concept of Recovery ..................................................................................................................... 21

3.5 Tactics, Strategies and Social Navigation .................................................................................................. 23

3.5.1 Social Navigation ......................................................................................................................................... 24

3.6 Summary ................................................................................................................................................................ 25

Chapter 4: Methodology ............................................................................................................................. 26

4.1 Methods, Data Analysis, Ethical Considerations and Limitations ................................................... 26

4.2 Difficulty of doing Research at ‘Home’: a Back and Forth Journey ................................................. 28

4.3 Issues with Gendered Encounters and Loneliness ............................................................................... 28

4.4 Summary ................................................................................................................................................................ 29

Chapter 5: Chronicity of the Built and Material Environment ..................................................... 30

5.1 Location and Architecture ............................................................................................................................... 30

5.2 Chronicity of Spatial Design: Ground Floors ........................................................................................... 31

5.3 Chronicity of Spatial Design: The Floors ................................................................................................... 32

5.4 Spatial Chronicity versus Spatial Temporality ....................................................................................... 33

5.5 Summary ................................................................................................................................................................ 34

3

Chapter 6: Chronicity of Politics of Time and Timing...................................................................... 36

6.1 Chronopolitics of Daily Routines .................................................................................................................. 36

6.1.1 Strategies of Silencing ............................................................................................................................... 38

6.2 Chronopolitics of Boredom and Social Isolation .................................................................................... 39

6.3 Chronopolitics of Therapy and Care Provision ...................................................................................... 40

6.3.1 Waiting times ............................................................................................................................................... 41

6.3.2 Compressed Therapy Agenda versus (Non) Vital Rhythm ........................................................ 42

6.4 Summary ................................................................................................................................................................ 45

Chapter 7: Chronicity of Life - The Continuum of Recovery .......................................................... 47

7.1 Acuteness of Recovery ...................................................................................................................................... 47

7.2 Continuum of Disruption ................................................................................................................................. 49

7.3 Chronicity of Life: Towards a Recovery of Existence ........................................................................... 51

7.4 Summary ................................................................................................................................................................ 54

Chapter 8: Conclusion ................................................................................................................................. 56

Bibliography ................................................................................................................................................... 60

Appendix .......................................................................................................................................................... 64

4

ACKNOWLEDGEMENT

This thesis would not have been possible without the help of very many people.

I am profoundly grateful to my supervisor, Dr Kristine Krause, who wisely guided me

through the ever changing turns and directions of my research, and who comforted me

with constructive, yet sensible, criticism throughout. I could not have wished for a more

supportive and ever present supervisor, where emergency Skype meetings took place on

weekends and late evenings.

My grateful thanks is extended to the two Cordaan Institutions which opened up their

doors and whose medical and managerial professionals patiently answered my many

questions. I felt very welcomed in both institutions.

I owe my deepest gratitude to my informants, who not only shared their life stories with

me, but also allowed me to observe their every move. We laughed, we cried, we cooked

and went on outings together.

This year would not have been possible without the emotional and financial support of

my family. Without you I would not be where I am. My thanks is extended to my proof

reading team, Nicole and Mark. You rock.

Finally, my love goes out to Jonathan, who had to put up with my many selves during the

writing process. I could not have done it without you. Nakupenda wewe.

5

CHAPTER 1: INTRODUCTION

This thesis contributes to the understanding of how the acute-chronic binary impacts

upon the stroke survivors illness and after-care provision experiences, and to what extent

this dichotomy constitute survivors’ chronicity1. The after-care landscape in Amsterdam

is divided into acute, sub-acute (rehabilitation), and chronic phases, whereby this

research focused on the latter two2. The care division is based upon the acute – chronic

dichotomy: the former is equivalent to curable and hence marked by temporariness.

Chronic in contrast is understood to be incurable, ongoing, with persistent and re-

occurring symptoms (Smith-Morris 2010: 21). Time, timing and temporariness therefore

are essential markers of the aforementioned divide. Speaking more globally, the stroke

(after) care landscape can be understood as being constructed by temporal modes of

socially organised timescapes: e.g. speed, rhythmicity, duration, length or continuity

(Ferzacca 2010). Furthermore, those who are the powerful employ the politics of time and

timing - which I refer to as chronopolitics - by way of regulating daily routines (ibid). As

will become apparent throughout this thesis, these human timescapes and the employed

chronopolitics are inherently political and used as form of social control (ibid). By its very

nature then, the acute-chronic binary not only dominates the biomedical discourse

(including biomedical practices and public health policy making), it also functions as

social navigator for it produces specific care provision strategies as well as stroke

survivors’ resistance tactics. This thesis therefore attempts to find answers on how this

dichotomy influences, if not produces, the chronicity of stroke survivors’ lived reality3, by

means of asking the following questions: How does the acute-chronic binary constitute the

experience of chronicity by way of determining the care landscape, and does the binary in

turn function as navigator through which the post-stroke experience is determined? How

does the binary influence long-term health care policies? How in turn do these policies

constitute the chronicity of stroke? How does this binary influence the institutional care and

therapy strategies and which tactics do stroke survivors’ employ in order to cope with such?

How is this dichotomy reflected in the built environment, and how is time experienced by

both acute and chronic stroke survivors? Throughout this thesis it becomes clear that this

1Chronicity refers to the state of being chronic or lasting for a long time (Ferzacca 2010), and the term was

introduced into the academic literature as ever more acute diseases are transformed into chronic. 2The sub-acute phase I investigated in a rehabilitation institution and the chronic phase in a nursing

home. 3Stroke is understood to be an acute and chronic condition.

6

binary influences the care landscape: by indexing healthcare resources; through

organising the medical, therapeutic and care practices; by means of determining the

chronopolitics of institutionalised daily routines, and via co-producing the built set up of

institutions. This in turn co-produces stroke survivors’ chronic identities.

Chronicity of stroke is marked by punctuated experiences of acute sickness

episodes (Eristroff 1993), as for instance survivors, when suffering another stroke or

acute flare-ups of their co-morbidities, are being temporally transmuted into acute

patients, whilst at the same time continuing to suffer from their ongoing chronic post-

stroke disabilities. Hence, stroke survivor, and chronic patients in general, experience not

one disruptive event (e.g. the initial stroke onset), they encounter disruption on a

continuum throughout their life-spans. It is the Chronicity of Life of a patient which should

concern researchers, and not so much the singular occurring disruptions. The

anthropological literature on the post-stroke experience, however, has largely focused on

the latter, by stressing upon biographical disruption (Bury 1981), fateful moments

(Giddens 1993) and significant events (Charmaz 1993). This thesis, then, contributes to

the knowledge on the chronicity of life by way of asking: How is the continuum of

disruption experienced by stroke survivors? How do past disruptions influence the lived

reality in the present, and how is their future informed by those? To what extent do

institutional practices constitute disruptions throughout the post-stroke recovery process,

and which tactics and navigators are used to combat those?

In order to promote a holistic rehabilitation provision, the focus has to shift from

a sole clinical (bodily) rehabilitation to a more holistic recovery concept, which ideally

should include the chronicity of a stroke patient’s life. Current post-stroke therapies

unfortunately are primarily focused on rehabilitating survivor back to their productive

potentials. However, as will be demonstrated throughout this thesis, post-stroke recovery

entails much more than the temporal rehabilitation of physical and cognitive symptoms

and disabilities. Rather, stroke rehabilitation is a life-long process, encompassing a stroke

survivor’s social, relational, and emotional environment, ultimately leading towards their

personal recovery. The concept of recovery not only encompasses these factors, wider

structural factors are furthermore included, as for instance, the acute-chronic binary

indexes the survivors access to rehabilitative resources. Those termed ‘hopeful’ to recover,

consequently, receive intensive therapeutic regimen, whereas less is invested in ‘hopeless’

7

cases, for their recovery is deemed to be unlikely. For those already termed chronic,

investment in rehabilitative therapy is minimal to non-existent. For this research,

therefore, it was of utmost interest to investigate to what extent such a holistic recovery

approach is incorporated into current rehabilitation provision. As has been demonstrated

throughout this thesis, such a holistic concept of recovery is entirely absent in the current

stroke rehabilitation provision. Subsequently stroke survivor and their wider social

network are left to their own devices when dealing with the aftermaths of the emotional

and relational impacts of the chronicity of stroke. In summary then, the chronicity of

stroke

[i]s no longer defined by the natural course of disease but by the availability of

biotechnical strategies to address them, hence chronicity of an illness

experience is not a medical fact, but a technological, political and economic one

(Smith-Morris 2010:21).

Carolyn Smith-Morris’s precise summary constitutes the red threat throughout this thesis

as the following chapters explore in more in-depth.

Chapter 2 places this research into context, by way of analysing the medical

definition, its treatments, its rehabilitation options and their shortcomings. It becomes

clear that the technical, political and economic facts not only determine all stages of

investigation, the stroke care landscape and the long-term health care policies are also

affected by those.

Chapter 3 provides an overview of the theoretical building blocks which informed

this research throughout: the acute-chronic binary with its resulting biomedical construct

of Chronicity; the counter concept of Chronicity of Life, which takes the human lifespan,

with its continuous disruptions. The Concept of (Personal) Recovery promotes a holistic

approach when helping survivor to recover their lives. Through analysing of strategies,

tactics and social navigation, the lived reality of my informants is further stressed upon.

Chapter 4 engages with the employed methodology, its ethics, data analysis and

limitations. Furthermore, the encountered difficulties of urban ethnography, as well as

how being a friend can cause sociability issues.

8

The next three ethnographic chapters draw upon how the acute-chronic divide

constructed my informants’ chronic identities, whereby chapter 5 and 6 demonstrate how

this binary was replicated in the built and material environment, as well as in the

institutional usage of time and timing. The chronicity of life, in contrast, is paid attention

to in Chapter 7.

Chapter 5 explores how the aforementioned divide was reflected in the

architecture and the interior design in both institutions. The modern, well-lit and

equipped rehabilitation institution fostered a quick recovery, whereas the old, dark and

scarcely equipped nursing environment co-produced chronic identities. As such the built

environment functioned as the social navigator in the production of care and therapeutic

strategies which my informants combated with certain tactics of resistance.

Chapter 6 demonstrates how this binary is replicated in the institutionalised usage

of time and timing, where chronopolitics were used as a powerful tool to regulate daily

routines. The almost hectic days in the rehabilitation setting contrasted sharply to the

endless unstructured days in the nursing home, which fostered boredom and social

isolation. Tactics and social navigators functioned as coping mechanisms in order to

combat the imposed chronopolitics in one way or the other.

Chapter 7 takes the alternative concept of Chronicity of Life as the point of

departure to highlight that the continuous disrupted pre- and post-stroke life span

informed my informants’ illness experiences. The different stages during which my

informants encountered these disruptions were informed by migration, discrimination or

divorces, and continued to be co-produced by structural factors which are promoted by

the acute-chronic binary.

This leads to the conclusion that the chronicity of my informants’ stroke illness

experience was informed by powerful technological, political and economic forces.

9

CHAPTER 2: CONTEXT

In order to be able to understand my interlocutors’ illness experience, stroke, as a medical

condition, has to be defined, its treatment options investigated and the rehabilitation

process reflected upon. The biomedical understanding of acute and chronic punctuated

every stage of the post-stroke experience, as the long-term health care policies and the

stroke after-care landscape in Amsterdam are constructed by the aforementioned binary

distinction. In this chapter I summarise the biomedical knowledge of stroke and its

rehabilitation. This biomedical knowledge is one of multiplicity, where different medical

(therapeutic) disciplines cater for different stroke symptoms. By critically reflecting upon

this knowledge, I will draw upon the boundaries of the stroke biomedical and clinical

rehabilitative knowledge and treatment options. I further explore the stroke care

landscape in Amsterdam, as well as the long-term healthcare policy reforms.

2.1 MEDICAL DEFINITIONS AND TREATMENT OPTIONS

A stroke occurs when the blood flow to the brain is cut off - either by a clot (Ischemic

stroke) or the breaking of a blood vessel (Hemorrhagic stroke) - causing damage to the

part of the brain that is deprived of blood (WebMD 2005-2014). The best treatment for

an Ischemic Stroke available to date is called Thrombolysis4, and for Hemmorhagic Stroke

it is interventional radiology. The former is treated with clot-dissolving drugs which are

directly injected in the affected blood vessel, the latter with non-invasive interventional

radiology via inserting a balloon in order to widen or to close off blood vessels in the brain

(ibid). Speed is essential, as the quicker the corrections are being done, the less brain

damage occurs. Partial skull removal constitutes another possible treatment option for

patients who suffer a severe stroke (regardless of the type), to provide their brain enough

time and space to recover and reduce swelling5, which might take only a week or several

months (ibid).

It is generally believed that hemorrhagic stroke survivors have better neurological

and functional prognoses than the ones who suffered an Ischemic stroke (Paolucci 2003:

4This form of acute treatment is only affective within the four hour time window from the onset of the

stroke. 5The majority of stroke mortalities are due the extensive brain swelling which occurs after a severe stroke

(WebMD 2005-2014). The removed skull is stored under the skin of the patient’s abdomen.

10

2861). However, these results are to be read with caution as many other factors (e.g. age,

the location where the stroke occurs, and the initial disability level) 6 determine the

recovery outcome (ibid)7. Spontaneous neurological recovery peaks within the first 1-3

months and may continue slowly for several months. Functional recovery, however, can

continue for some time after the neurological recovery is complete (Teasell et al 2013a:

30). Post-stroke symptoms are many and vary from one individual to the next: from

emotional and cognitive, to physical disabilities, and the extent of the stroke disability

determines and navigates a survivor through the rehabilitation process.

2.2 PRINCIPLES AND EFFICACY OF STROKE REHABILITATION

Studies have shown that rehabilitation in the sub-acute phase can dramatically improve

functional performances (Teasell et al 2013a: 18). The two most powerful predictors of

functional recovery, which also determine appropriate stroke rehabilitation

programmes, are the initial stroke severity and the patient’s age (ibid). Patients who

suffered a moderate to severe stroke are frequently admitted to stroke-specific

rehabilitation units, where they receive at least three hours of physically demanding

activities. Survivors need to be ‘fit’ enough to tolerate such intense programmes (Teasell

et al 2013b: 14). In Amsterdam such patients are mostly placed at READE8. Stroke

survivors with severe disabilities, limited physical endurance and/or limited attention

spans receive after-care in lower intensity inpatient programmes 9 , with treatments

spanning from three to five days a week, for up to three hours a day (ibid). Finally, mild

stroke patients are rehabilitated in an outpatient setting (ibid). However, this

categorisation is problematic, as not everyone with a ‘mild’ stroke can be catered for in

such an outpatient setting. I will focus upon the problematic further below.

Effective stroke rehabilitation programmes are interdisciplinary. A rehabilitation

team consists of physio-, logo-, ergotherapists, psychologists, geriatrists, general

6Socio-structural factors, such as the proximity of the nearest stroke unit, is undoubtedly another aspect of recovery. 7The medical director of the institution I conducted research in confirmed that according to her experience, Ischemic stroke recovery starts within the first 24 hours of initial onset, with stagnation later on. In contrast, hemorrhagic stroke recovery might take several weeks to kick off. However, once the recovery process starts, these patients have a more drastic recovery curve and better recovery outlook. 8READE provides a wide range of rehabilitation options for all types of injuries and more than 7000 clients are rehabilitated annually, ranging from children to the elderly. READE is located in West-Amsterdam (Reade 2014). 9The sub-acute institution I conducted my research with offered such low intensity programmes.

11

practitioners and dieticians, in order to provide the best possible treatment options for

patients (WebMD 2005-2014). Physiotherapists focus on problems with movement,

balance and coordination; ergotherapists on the activities of daily living (ADL), such as

eating, bathing, dressing or writing; logotherapists on relearning language skills and

swallowing impairments; psychologists with a patient's emotions and the dietician is

concerned with their diet (ibid). A stroke survivor’s body, therefore, is divided in

accordance to the different therapeutic practices, which in turn contribute to the

multiplicity of stroke and its enactments (Mol 2002: 55).

Interdisciplinary meetings are held shortly after a stroke survivors admission to

plan and coordinate their therapy regimen (ibid: 116). Such meetings therefore function

as point of departure, from where the different therapy pathways are mapped out, by way

of establishing rehabilitation plans and goals (ibid). If a patient no longer continues to

improve, the team plans their discharge. This rehabilitation approach has been criticised

by various disciplines to overly emphasise on the physical-, and to ignore non-physical,

hence social and also cultural needs (Peoples & Satink et al. 2011). It is argued that stroke

is never a linear physical condition, but rather co-produced by socio-cultural, economic,

environmental and political factors (Mol 2002, von Peter 2013).

2.3 CRITIQUE ON THE CURRENT REHABILITATION APPROACH

As explored above, the re-establishment or re-organisation of physical ability and of the

ADL(s) are the main focus in the stroke recovery. The emphasis is thereby solely given

upon the patient who has to overcome the physical, practical and cognitive challenges

post-stroke. Hence the patient is required to carry out the therapeutic work, whereby a

positive attitude and motivation is closely tied to the recovery potential (Becker &

Kaufman 1995: 169). Ellis-Hill (2000) states that

although the emotional and social difficulties experienced by stroke survivors

have long been recognised, these issues are rarely taken into account in the

clinical rehabilitation process” (ibid: 725).

This was also a major issue for my informants, especially for those already considered to

be in the chronic phase, for their need for support be it psychological or social, is even

greater. Though Becker & Kaufman (1995) questioned the implantation of the

rehabilitation policies in current health care systems, they did so by addressing this in

12

relation to the continuing rehabilitation for old people in the community setting (1995:

170). Ongoing rehabilitation, however, is also of utmost importance for institutionalised

chronic stroke survivors, as rehabilitation would not only contribute towards their

overall wellbeing, but it may also prevent co-morbidities. Unfortunately the reality is

somewhat different: as chronic stroke survivors’ recovery is highly unlikely, they are

termed incurable and unworthy of continuous rehabilitation. Funding for therapy

treatment (through the established ZZPs 10 ) is therefore limited, if available at all.

However, my informants confirmed that therapies contributed to their well-being, as for

instance, a stiff body can relax whilst on the cycling machine. As can be seen from this

short summary, the acute - chronic dichotomy greatly influences the rehabilitation

provision, as stroke or any other illness, is conceptualised as temporally bounded

(Manderson & Smith-Morris 2010). Rehabilitation should rather be based upon a

patient’s lifespan, which is marked by a multiplicity of social, somatic and bodily

disruptions continuously impacting upon their post-stroke self. Yet, the acute-chronic

dichotomy informs the well-developed stroke after-care landscape in Amsterdam and

throughout the Netherlands, as it is divided into acute, sub-acute and chronic.

2.4 ACUTE LANDSCAPE

As mentioned above, acute stroke care requires a vast range of specialised diagnostic

equipment and knowledge. Not all hospitals throughout the Netherlands have the

technical apparatus and the medical expertise to effectively treat stroke survivors. The

focus is laid upon special Stroke Chains (CVA Zorgketens), where regional health care

providers11 deliver coherent stroke care (Kennisnetwerk CVA NL n.d.). The hospitals are

specialised on the newest and most advanced stroke diagnostic treatment options, and

employ highly experienced medical personnel. Five Stroke Chains 12 are located in

Amsterdam and my informants were mostly treated within the South East cluster, where

sufferers are admitted to the AMC13 for acute and emergency treatment, and to Cordaan

Berkenstede and READE for sub-acute care. Depending on their condition, a stroke

survivor might stay in the hospital for one week up to six months. Since time matters,

10For an explanation of the ZZPs as assessment tool please refer to the next section which deals with the

long-term health care policies. 11Such as hospitals, rehabilitation institutions, nursing homes, homecare and general practitioners. 12Amsterdam Noord, West, Zuid, Oost, Zuid-Oost (Kennisnetwerk CVA NL n.d.). 13AMC stands for Academisch Medisch Centrum and it is a University Medical Centre (Academisch Medisch

Centrum 2013).

13

physical distance to such specialised hospitals might affect the rural population’s acute

stroke care.

2.5 SUB-ACUTE OR REHABILITATION LANDSCAPE

In the rehabilitation/sub-acute phase there is a vast array of rehabilitation options

available to a survivor. Which option is best is dependent on the medical assessment14

shortly before stroke survivors are discharged from hospital, where the package of the

intensity of needed care (ZZP15) is established.

Mild strokes survivor are usually discharged into the community, where the

regional stroke chain provides ambulant therapy in a survivor’s home; in a local hospital’s

rehabilitation unit; or in private physiotherapy centres. Depending upon their ZZP, stroke

survivors might also be eligible for formal homecare services, or the possibility to attend

day care centres16. Those who suffered from moderate strokes are best managed in a

comprehensive, well-staffed and intensive rehabilitation unit (Teasell et al 2013b: 14),

such as READE. The duration of their stay is dependent on their progress. My informants

reported to have been admitted to READE from three weeks up to eight months. Severe

stroke survivors or the elderly are the least likely to achieve functional independence

regardless of treatment, and are therefore transferred to a less intensive rehabilitation

programme (ibid), e.g. Berkenstede. The duration of their stay is again dependent upon

their recovery progress, however the mean average time is around eight weeks.

Arguably the acute-chronic dichotomy determines this phase and its institutions,

as moderate stroke survivors are the most ‘hopeful’ cases to achieve the best clinical

recovery. Through intensive rehabilitation it is hoped to rehabilitate them to the point

where they can be discharged into their informal care network, and at some point become

productive citizens again. In contrast, clinical recovery of severe stroke survivors is

deemed unlikely and not worth the costs. However, some flexibility is given where there

is a glimmer of hope for even the slightest improvement, severe stroke survivors are at

times upgraded and transferred to intensive rehabilitation programmes. One of my

14The assessment also includes a meeting with the patient’s therapy team, his/her family and social or

community workers in order to establish a comprehensive stroke-after care plan. 15ZZP assessment procedures are explored in more detail further below. 16Survivors are able to socialise, receive therapies, train their brain and participate in group activities in

such day care centres.

14

informants experienced such upgrading, as it was hoped that due to his young age he

might profit more from the intense programme offered at READE, which unfortunately

turned out to be not the case. It can be argued that the post-stroke body functions as the

social navigator, as its post-stroke disabilities specify which rehabilitation programme a

stroke survivor is admitted to (Vigh 2009).

2.6 CHRONIC LANDSCAPE17

When there is no more clinical recovery to be gained a stroke survivor is deemed to be

chronic. They are either discharged to the community and into informal care, or admitted

to care and nursing homes, assisted living environments or into sheltered housing18 .

There are seventy-six care and nursing homes spread throughout Amsterdam

(Zoorgkaart 2014). Most of my informants lived in South-East Amsterdam prior the

stroke onset, and this was taken into consideration when deciding on a care or nursing

home19. However, it is not always possible to cater for the wishes of the survivors and

their families, as sometimes the first choice institution cannot provide the necessary

medical care.

2.7 LONG-TERM CARE (LTC) IN CONTEXT

The Dutch Welfare State (DWS) can be understood as a hybrid between types of

corporatism (Esping-Andersen 1990) and social-democracy (van Orschot 2002: 52-60)20.

A universal 'people's insurances' covers all Dutch citizens, and insurance and assistance

benefits are comprehensive and relatively generous (ibid). The Dutch long-term care

(LTC) scheme was introduced in 1968 through a national compulsory social insurance

system, which was created by the AWBZ21 (da Roit 2012: 228). The LTC and elderly care

was marked by a high percentage of institutionalisation in the 70s and 80s, which was

17For more detailed information on the long term care system please refer to the following section. 18For more information regarding the assessment criteria’s please see below. 19Medical professionals, therapists, the patients’ family and the stroke survivor discuss the possible routes.

However, the decision is also very much dependent upon the stroke survivors ZZP which will be discussed

below. 20In corporatist welfare states, social benefits are granted via status. The state is the major provider of welfare and the market has a marginal role. In contrast, means testing benefits are the main characteristics of the social-democracy welfare state where social insurance plans are moderate. Rather the state interferes in the market system by subsidizing private welfare schemes (van Orschot 2002: 52-60). 21 AWBZ stands for Exceptional Medical Expenses Act through which the long-term care market is governed. Contribution is deducted from all people in employment or on benefits. The AWBZ is concerned with the provision of the best possible care, nursing and support for people who are termed incurable (NZA 2012: 43).

15

informed by solidarity and collectiveness (da Roit 2010: 22). The 1980s22, however, saw

a shift towards personal responsibility (van Orschot 2002: 52-60), which was

characterised by an introduction of risk differentiation, activation, privatisation and

decentralisation (ibid). Due to the democratic nature of the DWS, the expenditure for

long-term care (AWBZ)23 has risen from 14 billion in 2000, to 24,6 billion in 2011 (NZa

2012: 43). Therefore, in 2009 the payment system for long-term care was reformed, with

2015 as the actual implementation year (ibid), whereby 2014 functioned as ‘transition’

year in order to give institutions and municipalities the chance to adjust. Before the

reforms, long-term care institutions were paid on the basis on the intake of patients,

hence upon their capacity. Since 2009, however, payments are based on the intensity and

complexity of the care provided (The Health Systems and Policy Monitor 2014), which is

divided into several care intensity packages (Zorgzwaartepakketten or ZZP) 24 :: 10

packages for the nursing and caring sector (where stroke long term care falls under), 13

for the mental care sector, and 29 for the care for disabled people. The Dutch Health Care

Authority (NZa) provides the budget for the ZZPs, which varies from €55 per day to €300

per day (ibid). In order to be eligible for LTC, people undergo a ‘Care Needs Assessment’25,

where the intensity of needed care is assessed (the so called ‘indicatie’) (NZA 2012: 44).

The ZZP system is of crucial importance for this thesis, as a stroke survivors’

condition is assessed before being discharged from the hospital26. This is done by a team

of medical professionals and social workers. If a stroke survivor is cared for in a

specialised stroke chain, then professionals from the other institutions also attend the

meeting. The completed assessment protocols are sent to CIZ, who open up a ZZP from

this report. Professionals thus play a major role in assessing needs and formulating care

plans, as through their judgement, or discretionary power, an individual’s access to

resources is determined (Da Roit 2012: 234). My professional informants admitted to

often stretching their assessment roles in order to provide the best possible care plans

22This was due to the global oil and economic crisis in the late 1970s. This shift took also place in Northern European countries, where the enhancement of community care was favoured over institutionalisation (da Roit 2012: 230). 23 The goal of the AWBZ is to provide collective cover for healthcare risks which cannot be insured

individually, and which private insurance companies are reluctant to cover (ibid). 24The funding system used for the care intensity packages mean that healthcare providers are paid on the

basis of health care actually provided and no longer on the basis of the size of their organisation. 25Assessment is done by the Centre for Needs Assessment (CIZ). 26The disabling nature of their condition, the level of care needed, or whether or not one is eligible for a

scoot mobile is being assessed.

16

for stroke survivors. It therefore can be argued that they employed discretionary power

as a tactic in order to poach in the terrain of the new health policies (de Certeau 1984). If,

however, a stroke survivor is assessed with an indication of ZZP 4/5 or below, his/her

care requirements are deemed to be relatively ‘light’ and to be cared for in their own

home environment from 2015 onwards (NZa 2012: 13). My institutionalised informants

were indicated with a ZZP 3-4, all of them were gravely disabled and they needed to rely

on 24/7 care. Henceforth their care requirements were far from ‘light’. They were aware

of the policy changes and expressed concerns of having to leave the nursing home once

the changes are implemented.

Taking the above into consideration, it can be argued that the professionals, as well

as the ZZP system, function as social navigator through which a stroke survivor’s care

pathway27 is decided upon. For an in-depth exploration how the LTC reforms impact

upon the long-term health care employment market, its educational standardisation, and

how these reforms impact upon the home care provision system, please refer to Appendix

A.

2.8 SUMMARY

The post-stroke illness experience is marked by the biomedical acute –chronic distinction

with its linear temporalities of diagnosis, treatment and recovery. This was not only

reflected in the stroke treatment, where time is of utmost importance to ensure the best

recovery outcome. Such an understanding also determined the rehabilitation process,

which is focused on making a patient physically fit and productive, hence ‘normal’, as soon

as possible. The stroke care landscapes as well as the LTC policies are furthermore

determined by this dichotomy. Through the ZZPs a stroke survivor’s care pathway is

established, whereby the medical professionals, through their discretionary power,

function as crucial navigators. However, as this assessment very much relies on

interpersonal contact and practices it is prone for abuse, e.g. favouritism or

discrimination. Yet, it is the discretionary power, through which the professionals

tactically use the available resources in order to carve out the best care plan for a stroke

survivor. Care workers too are victims of the chronicity of the long-term care policies,

as their qualifications are not standardised, and their wages are the lowest in the LTC

27Whether someone is institutionalised or well enough to be cared for at home.

17

sector. Therefore, the chronicity of stroke is as much constructed by medical facts, as it is

determined by socio-structural and political factors, which the following theory chapter

further stresses upon.

18

CHAPTER 3: THEORETICAL FRAMEWORK

In order to understand the after-care experience of stroke survivors, the

distinction of ‘acute’ and ‘chronic’ has to be put into context by way of relating it to current

anthropological and biomedical explanations. What follows is an exploration of the

biomedically understanding of chronicity - which is informed by a linear and temporal

timeline, such as diagnosis, treatment and recovery - highlighting the duration of illness.

Alternative approaches to chronicity, however, stress upon the chronicity of life, which

draws upon continuous disruptions, punctuating not only the lifespans of the chronic ill

but also of the healthy. This chapter also highlights the tactics and navigation strategies

which the ‘weak’ employ in order to ‘poach’ in the terrain of the powerful in order to find

their way towards their personal recovery.

3.1 CHRONICITY OF LIFE

With the increased academic attention towards chronic conditions 28 the

establishment of ‘chronicity’ took hold, in order to describe the state of being chronic. In

relation to illness, Ferzacca (2010) defines chronic states as unending and repetitive

illness episodes, which frequently re-occur, and with symptoms persisting beyond the

expected (ibid: 158). Chronic diseases are unending due to the un-availability of disease

modifying treatments and an individual’s recovery is therefore unlikely. However,

chronicity not only highlights the duration of health, it also draws upon the human

lifespan in general (Smith-Morris 2010: 37). As such the human lifespan can be regarded

as fragmented as it is continuously punctuated by mundane disruption of everyday life29,

and major disruptions such as the sudden onset of stroke (ibid).

However, the investigation of chronicity with its disruptive nature, contributed to

an overuse of the social science concepts of biographical disruption (Bury 1982), fateful

moment (Giddens 1991), or significant event (Charmaz 1991), hence feeding into the

biomedical fragmentation of acute and chronic self. Anthropologists such as Gay Becker

(1998) and Smith-Morris (2010), as well as other health researchers like von Peter

(2013) argue to break with such fragmentation. In so doing, rather than investigating

28Chronic conditions are not only disease related; they are also related to global structural inequalities. 29People encounter disruption throughout their lifespan, e.g. childbirth; divorce of parents, unemployment, migration, marriage, but also in their everyday lives through stress for instance.

19

chronicity as a circumscribed state, the chronicity of life, with its continuous and constant

disruption, is stressed (Smith-Morris 2010: 37). Henceforth, illness events should be

placed in an individual’s continuous biographical flow, which is marked not by a pre-, or

a post illness self, but rather human encountering of multiple selves along the way30 (von

Peter 2013).

The biomedical interpretation of chronicity, in contrast, is not informed by the

continuum of disruption, but rather by a linear timeline. As such, “time is not a neutral

concept within biomedicine, it is rather powerfully used in diagnosis, treatment and the

labelling of illness process” (Foucault 1977, cited in Ferzacca 2010: 158). The diagnosis

process is defined and determined by temporal factors such as treatment and recovery,

where the sick are labelled as ‘acute’ or ‘chronic’. Hence a heterogeneous group is made

homogeneous (Hacking 2006, cited in van Peter 2013: 51). This in turn not only impacts

upon a survivor’s understanding of self, it also impacts upon their access to rehabilitation

options. A further exploration of the biomedical acute – chronic dichotomy is therefore

necessary in order to understand chronicity.

3.2 FLUID CONCEPTS OF ACUTE AND CHRONIC: THE DICHOTOMY

Since centuries the biomedical and public discourse of the transition from health to illness

was dominated by the acute–chronic dichotomy31 (Manderson & Smith-Morris 2010: 3).

The concept of acute, however, fails to distinguish between benign, terminal and fatal

conditions. In the past, the aforementioned dichotomy was a useful instrument in order

to convey the implications of a biomedical diagnosis to the lay public (ibid), where the

acuteness of a diagnosis almost always corresponded to a fatal outcome. This however

changed with the introduction of new technologies, interventions and pharmaceuticals,

and former acute, infectious or incurable diseases have become chronic and controllable

(ibid). HIV is a good example for this fluidity of disease, which shifted from being an acute

and terminal illness, to a lifelong manageable disease (Russell & Seeley et al. 2007), hence,

both the acute and chronic stage is experienced fluidly. Stroke survivors similarly

experience their disease: from a potentially fatal initial onset to a life marked by co-

30One is not only his/her illness self, he/she is a parent, a child, sibling, friend and colleague, hence labelling a particular habitus ‘chronic’ becomes futile (von Peters 2013: 52). 31Other related dichotomies are: IDs :: NCDs; curable :: incurable; visible :: invisibility; dramatic onset ::

insidious.

20

morbidities and post-stroke disabling conditions, which in turn are punctuated by acute

illness episodes. Time and temporality is essential for the creation of the acute-chronic

dichotomy, as it is one of temporality and linearity. Throughout this thesis it will become

clear that stroke illness patterns and hence illness experiences vary enormously. This

binary has fostered the establishment of chronicity, which in turn was criticised by social

and health scientists.

3.3 ANTHROPOLOGICAL CRITIQUE ON CHRONICITY

As much as we are unable to define acute as distinct and confined states of illness, the

same holds true for chronicity as it is a punctuated experience where sufferers encounter

a constant flux between acute and chronic sickness episodes (Eristoff 1993). Sue Eristroff

(1993) was one of the first anthropologists to recognise that

chronicity and disabilities are constructed by: the temporal persistence of self and

other-perceived dysfunction, continual contact with powerful others who diagnose

and treat, gradual but forceful redefinition of identity by kin and close associates

who observe, are affected by, or share debility; and accompanying loss of roles and

identities that are other than illness related (ibid: 259).

This not only recognises that chronic diseases are defined by the identity of the sufferer,

but they are also constructed by social relations and by wider socio-cultural factors.

Dennis Wiedman (2010) also acknowledges this when writing about the theory of

chronicity in relation to the global pandemic of metabolic syndrome (Mets). Wiedman

(2010) argues that socio-cultural factors, rather than genetic and biological ones have to

be employed in order to explain chronic conditions. She further argues that chronic

metabolic disorders 32 reflect the physical body’s response to the ‘chronicities of

modernity’, e.g. the shift in food and lifestyle practices due to global capitalism (ibid: 38-

39). Henceforth, the control of chronic conditions often require stringent medical, care

and drug regimen, through which a sufferers life is transformed from being active and

productive, to one of daily chronicity marked by dependency, control and routines.

Wiedman’s (2010) theory of modernity can be transferred to the Dutch LTC policies,

which determine the after-care landscape, and as such index stroke survivors’

accessibilities to health-care and rehabilitation resources. In this respect, LTC policies

32Diabetes mellitus is the most common metabolic disorder (Wiedman 2010).

21

are co-responsible for the establishment of chronic conditions. This is particularly the

case when survivors are institutionalised, where life is marked by immobility, which in

turn fosters the establishment of co-morbidities, hence reinforce chronicity. Taking the

above into account it becomes clear that “[…..][c]hronicity of an illness experience is not

a medical fact, but a technological, political and economic one” (Smith-Morris 2010:21).

In order to capture these facts, throughout this thesis I will demonstrate how

stroke survivors experienced their health status in relation to their participation in social

and economic life: e.g. Emiel’s drive to re-establish his business; Dominik’s engagement

with a traditional healer in hope to regain his mobility in order to take up his study of

medicine again; or Mr Osei’s social navigators, whom he employed in order to be able to

re-establish a meaningful life as a lone parent outside the nursing home. Therefore,

instead of concentrating on the temporariness of acute and chronic illnesses, von Peter

(2013) argues that the focus should rather be laid upon a person’s healthy and productive

facets. This should foster resilience and self-management, the development of a sick

person’s independence and their self-determination (ibid: 49). It is further understood

that “health and illness exist on a continuum and during the recovery process a person’s

own diversity is respected and encouraged” (ibid). Unfortunately I have seen little

evidence that this approach is adopted in the post-stroke recovery process, rather the sole

focus is laid upon the clinical, hence bodily recovery.

3.4 (COUNTER) CONCEPT OF RECOVERY

For this thesis the concept of recovery is of particular interest, as it describes the

continuous journey throughout a sufferer's lifespan post-stroke. This concept is a widely

used one in mental health literature, as well as practically applied in mental health

services (Slade & Amering et al. 2014). There are two forms of recovery recognised: the

clinical recovery with its focus on changing people through treatment in order to ‘fit in’,

to become ‘normal’ and ‘independent’ again (ibid). Personal recovery is the second form

which focuses on living a satisfying, hopeful and contributing life even with limitations

caused by illness. Anthony (1993) defines personal recovery as

a deeply personal, unique process of changing one's attitudes, values,

feelings, goals, skills and roles. It is a way of living a satisfying, hopeful, and

contributing life even with limitations caused by the illness. Recovery

22

involves the development of new meaning and purpose in one's life as one

grows beyond the catastrophic effects of [….] illness (cited in Slade & Amering

et al. 2008: 130)

From this point of view, recovery can be understood to be a way of living life rather than

a state to be accomplished, and it is as much a process as it is an outcome. Although this

model might evoke criticism for solely laying the responsibility of recovery in the

individual’s hands, hence shifting attention away from possible structural factors,

through the empowering mode promoted by this concept, these structural factors might

as well be made explicit. In this perspective personal recovery can also be termed as social

recovery (Slade & Amering et al. 2014), as it is about “recovering a life”: the right to

participate in all facets of civic and economic life as an equal citizen (ibid: 14). As much as

chronicity fosters exclusion (e.g. by isolating stroke survivors in nursing homes), personal

and social recovery fosters inclusion by reducing or eliminating social barriers.

Furthermore, the concept of recovery also stresses upon the lifelong identity work, in

which the chronicities of daily adjustment, improvements and rebuilding punctuate the

lives of the sick and the healthy (Smith Morris 2010: 36). Hence “[co]ntinuity is not an

illusion [….], the illusion is in our labelling of lifetime illness episodes as distinct from an

otherwise disease free life (ibid: 35). Chronic identities, therefore, are neither pre-

existing nor given, they are rather performed through mundane enactments and

composed of relationships with other bodies or material objects (von Peters 2013: 55).

As such the chronic body is in

(a) state of permanent flux, simultaneously transforming and being

transformed, thus [the chronic body] is far from being a simply passive,

representative container…. Identities are acted out in relation to various

sites and places, including their material constraints and surrounding

objects. Consequently the material world must therefore also be included if

we want to fully comprehend the nature of ‘chronic’ beings (ibid: 54-55).

Von Peter (2013) stresses upon the importance of how people relate to their

environment through practices, tactics, strategies and social navigations. These are

important themes throughout this thesis, as stroke survivors tactically navigated their

23

way through the stroke care landscape and resisted the institutionalised care provision

strategies.

3.5 TACTICS, STRATEGIES AND SOCIAL NAVIGATION

In order to analyse everyday practices, many authors refer to Michel de Certeau’s (1984)

distinction between ‘strategies’ and ‘tactics’ 33 . De Certeau (1984) argues that the

powerless or ‘weak’ people adopt a bricolage of tactics in order to create space for

themselves in environments which are defined by institutional or other people’s

strategies which often function as forms of social control (ibid: 30 - 42). Social control

always generates some form of resistance, and according to de Certeau (1984), the ‘weak’

employ certain tactics in order to ‘poach’ in the terrain of the powerful. This poaching

theory is especially interesting when investigating chronic ill people’s tactics for gaining

access to resources such as sickness or disability allowances, equipment, or the possibility

for re-training. By employing poaching tactics therefore, the ‘weak’ convert their

powerlessness into strategies through which they gain some control back over their lives.

Poaching tactics are ever more important for the institutionalised chronic sick, as

by tactically employing strategies they try to regain some control over their lives by, for

instance, combating the institutionalised time regimen. The politics of time and timing

functions as a form of social control through which the institutionalised daily routines are

structured (Ferzacca 2010: 157). Ferzacca (2010) calls this form of social control

‘chronopolitics’. My informants tactically used me in order to resist and advance their

situation by way of asking for yet another cup of coffee, by using me to ‘escape’ the

boredom on the ward, or by ‘employing’ me to prepare their dinner. Hence, the ‘weak’,

with their employed tactics of resistance, situational transform into the powerful and in

charge of their lives (ibid). De Certeau (1984) therefore might be criticised for

essentializing the weak, as the concepts of strategies and tactics can lead to the

polarisation of humans (e.g. weak and powerful). Rather, his concept should be employed

in order to describe subject positions and how humans act, as both strategies and tactics

are constructed by the practices of everyday life.

33These practices are always reproduced and negotiated in a given society or community (Styhre 2004), e.g.

the reproduction of therapeutic and care practices and how they are influenced by health care policies.

24

De Certeau’s (1984) theory of tactics, strategies and poaching, is useful for this

thesis as all of my informants tried to carve out a niche for themselves within an

institutionalised setting, where they encountered (powerful) strategies not only through

health and health care policies, but also through the care personnel. My informants also

employed such tactics when navigating their way through the stroke care and after-care

landscape, a process which Vigh34 (2009) calls social navigation.

3.5.1 SOCIAL NAVIGATION

Social navigation, as Vigh (2006) argues, “is primary a question of evaluating the

movement of the social environment, one’s own possibilities for moving through it, and

its effects on ones planned and actual movement” (ibid: 13). Social navigation, therefore,

is always related to human tactics, strategies and every day (poaching) practices. In

relation to my thesis, the stroke survivor’s illness experiences are intertwined with

complex social (powerful) forces, such as the care landscape, long-term care policies, and

professional and/or informal care providers. As such, both, the individuals experience

and the social forces, are in continuous motion, hence ever changing and dependent upon

each other (van der Sijpt 2014: 2). Thus stroke survivors’ decision making does not

happen in a vacuum but is rather a result of the constant involvement of social others.

However, this social navigation is also influenced by the post-stroke body, as its

symptoms function as navigator for medical assessments, for the establishment of care-

packages (ZZPs), and the choice of rehabilitation institutions. A stroke survivors’ body

therefore “both directs and demands navigation” (van der Sijpt 2014: 11), hence “the

bodily navigation […..] is always dialectically related to social navigation” (ibid).

Vigh (2009) further understands social navigation to be attuned to the way

humans move in relation to their future. In this manner, navigation is related to

movement through both the “socially immediate and the socially imagined” (Vigh 2009:

425). The imagined nature of social navigation, therefore, is constructed by concerns,

problems and anxieties which individuals encounter in the present, as well as by future

dreams and aspiration, where people “move towards positions they perceive as being

better than their current location and the possibilities within them (ibid: 432). In this

34 Vigh (2006) highlights this by drawing upon the processes of mobilization of urban youth during Guinea

Bissau’s civil war.

25

respect an individual’s horizon changes, which affects “both our vistas (points of views)

and our attainable social positions” (ibid: 426). The imagined social navigation of stroke

survivors’ is informed by their immediate concerns of bodily recovery in the sub-acute

phase and in the chronic phase by their desire for a better life outside the nursing home.

3.6 SUMMARY

I aimed to demonstrate that acute and chronic illnesses are not temporary bounded

illness states; but rather in constant motion where illness episodes are experienced in a

continuum. When investigating chronicity it is important to examine the whole lifespan

of a diseased, and not just the duration of health, which biomedically is understood to be

linear and temporal. Therefore, the chronicity of life has to be taken as point of departure

when investigating chronic states of being, as the human lifespan is constantly and

continuous disordered, not just by re-occurring illness episodes, but also by wider socio-

economic and cultural disruptive factors. The post-stroke recovery and rehabilitation

process, consequently, has to take these factors into account. Recovery not only

constitutes the clinical rehabilitation, it includes to an even greater degree the personal

recovery of stroke survivors which promotes a way of living a dignified and meaningful

live, even with ones acquired post-stroke disabilities. Yet such a personal recovery

approach is not promoted in nursing homes, where many of the gravely disabled stroke

survivors spend the rest of their lives. Instead the politics of time and timing function as

an instrument of social control, hence supressing any efforts of personal recovery. In

order to better their lives, residents employ certain poaching tactics to carve out a niche

for them to make space for the recovering process of their lives. The chapters to come will

demonstrate this in more detail by way of drawing upon how my informants’ resisted the

chronicity of built environment and the politics of time and timing. The next chapter,

however, draws upon the employed methods, the difficulty of conducting urban

ethnography and on issues regarding friendship and loneliness.

26

CHAPTER 4: METHODOLOGY

This thesis is based on ten weeks of qualitative ethnographic research conducted in

south-east Amsterdam (SEA), in two of the Cordaans’ 35 institutions (a rehabilitation

institution and a nursing home), and with one Ghanaian stroke survivor living in another

independent living establishment. With the latter participant and the ones in the nursing

home and I was able to conduct research for eight consecutive weeks, one day per week.

In the rehabilitation institution my research spanned over three consecutive weeks, four

days per week. Research participants in the rehabilitation institution comprised of one

stroke survivor of non-Dutch, and two of Dutch origin. In the nursing home I was able to

recruit four participants of non-Dutch, and one of Dutch origin36. Care and managerial

personnel, as well as external health care experts also participated in this study. What

follows is a reflection on the methods, analysis, ethics and limitations of my research. I

then explore the problematic of doing research in an urban environment, and how being

a friend can cause sociability issues.

4.1 METHODS, DATA ANALYSIS, ETHICAL CONSIDERATIONS AND LIMITATIONS

On the first day in each research setting, care personnel, team or location managers and

the medical director introduced me to potential informants; they explained the purpose

of my research and asked for informed consent. In addition I informed my interlocutors

about the anonymity and voluntarily aspect of their participation and their possibility of

withdrawal. All agreed to participate and with all I could converse in English. The main

method of information extraction was by conducting informal and semi-structured in-

depth interviews. Though I prepared questions, I let my informants decide where to take

the interview, hence to “develop their own account of the issues important to them”

(Green & Thurgood 2011: 94). Through this method, interesting, though sometimes

unrelated topics, emerged. Expert Interviews were semi-structured in nature, whereby I

paid attention not to disturb the flow of the interview. I also joined lunch breaks with

various professionals: in the nurse room, with cleaners in the canteen, and with medical

35Cordaan is a health and elderly care organisation, which has rehabilitation centres, nursing and elderly

homes spread throughout Amsterdam. 36Please note that I used first names for those informants I had a particular close research relationship. All

names have been changed to protect the identity of my informants. For further demographic

information please refer to Appendix B.

27

doctors and therapists. At these occasions I was able to observe the interaction between

them, and I could ask questions about my informants in order to obtain a holistic picture

of their condition and their family situation. Professionals in turn could ask me questions

and we shared jokes and food, hence rapport was established in an informal manner.

Triangulation of methods was crucial during the fieldwork. Not only did I

frequently talk to all of my informants, I also applied participant observation to notice

their behaviour, their practices and interaction with each other, and with the care

personnel. Henceforth, I could gain useful insights in the running of these two institutions.

Depending on the given situation, I employed two methods of data collection: note taking

and tape recording, and every evening I transcribed the recorded interviews and

digitalised the notes. For the analysis of my data I used various theories and techniques,

such as open coding and mind mapping in order to find broad themes, whereby sub-

themes emerged through the writing out of ethnographies. Hence my theory is based on

the data I collected, which I analysed by using practice and chronicity theories.

Participant’s consent and confidentiality are core principles which informed my

research throughout (Green &Thurgood 2009:62). I tried to protect my informant’s

privacy, integrity and autonomy at all times by providing an informed consent form at the

first encounter, and I talked them through their rights, responsibilities, benefits and risks.

Another ethical consideration revolved around the emotional consequences of

interviews, especially for those informants who were severe disabled (ibid: 62). I aimed

to make the interview experience a positive one for my informants, where research

questions reflected their concerns and opinions. Finally, in order to protect my

informants from the emotional pain of losing a friend, I was very clear about the limited

nature of this research and of the interpersonal relationship.

The short-levity of this study, my research focus on stroke, and the language

barrier only permitted a small sample of respondents. All of my informants had a very

good command of English, and though most of them suffered from aphasia, all could

express themselves clear enough to me. As the majority of my participants were male, this

gendered focus undoubtedly shaped, but also limited the outcome of this research. As a

white, middle aged woman, not the building up of rapport was the issue, but rather the

emotional and sexual deprivation which my informants’ experienced. Hence, at times I

was in need to discontinue with the interview due to the sexual intimations I encountered,

28

but also because it emotionally affected my informants. Furthermore, due to timely

constraints of this research I was not able to include family-members and partners and

neither could I observe their visits. To partly overcome this issue, I obtained third hand

knowledge about my informants’ family situation by way of talking to the care personnel,

who knew the families very well.

4.2 DIFFICULTY OF DOING RESEARCH AT ‘HOME’: A BACK AND FORTH JOURNEY

As I conducted my fieldwork in SEA I consider it to be a research at ‘home’. Although I am

Austrian by origin, since one year I call Amsterdam my home with work, study and social

commitments to fulfil. My lifestyle did not change during fieldwork, in contrast, it just

added another layer to my already busy daily schedule. A fieldworker’s persona,

according to Carputo (2000), is “made up of partial identities that abruptly shift according

to changes in context (e.g. at work or in the field)” (ibid: 27). Furthermore she argues that

conducting research at home is not one of ‘leaving for the field’, it is rather a constant

coming and going to and from the field (ibid). As such a ‘total’ immersion into the field is

difficult to achieve (Amit 2000: 6; Carputo 2000: 28), which during the first months of

research contributed to a sense of not being able to carry out ‘proper research’, and of

‘just scratching the surface’. This was especially due to the fact that I was in need to move

house and to adhere to work commitment37.

4.3 ISSUES WITH GENDERED ENCOUNTERS AND LONELINESS

Charmaz (1991) argues that social isolation can be directly translated into loneliness

which can contribute to a ‘superficial’ sociability, where institutionalised chronic sick or

the elderly seek contact with whomever possible (ibid: 97). Tillman-Healy (2003) further

argues that friendship and fieldwork are similar as both involve being in the world and to

both entrée must be gained (ibid: 732). Furthermore, conversations, every day

involvements, compassion, giving and vulnerability - which mark friendships - are also

the cornerstones for data gathering (e.g. participant observations and formal/informal

interviews) (ibid). It was not difficult to establish a trustful, though temporary, friendship

with my interlocutors after a short period. I did so by taking them out for walks or to

37Effective days to conduct fieldwork in the first month were from Monday to Wednesday.

29

outings (e.g. lunch or to the church), by preparing and cooking dinner for, and with them,

or simply by spending time with my informants.

However, establishing a friendship relationship, especially with institutionalised

and lonely male participants, also bears the risk to develop romantic and sexual feelings

towards the (female) researcher. This was also acknowledged by Shuttleworth (2000),

who argues that disabled men are hoping for the development of a sexual relationship by

first establishing a friendship with a woman (ibid: 266). As most of my informants were

male, the topics of emotional relationships and sexuality were a constant companion

throughout the research period38. This was also difficult for me as a researcher, as to how

to react to sexual intimations and to the praising of affections. Hammersley & Atkinson

(1998: 118-119) argue that women fieldworker are thought to be vulnerable to sexual

imitations, especially when conducting fieldwork in an institutionalised setting. This was

particular the case with the one male informant who lived in that independent living

environment, and who was fairly mobile. He constantly tried to touch and kiss me, at

times aggressively. I tried to keep distance, by reminding him about the purpose of my

presence. Unfortunately, I needed to discontinue the research with him, as he could not

accept the social boundaries of a researcher-informant relationship.

4.4 SUMMARY

The lessons learned from this research experience are many. First, and most importantly,

when conducting research with institutionalised participants, their social isolation and

loneliness can contribute to a rather complicated research situation. Second, as stated

above, if the research period is short, an institutional setting might be best. Third, I now

appreciate the fact that one day in the field is not the best way to extract results. Despite

of all the difficulties encountered, this research grounded me as an ethnographer, which

hopefully is reflected in the following ethnographic chapters. The next chapter explores

how chronicity of my informants’ illness experience is co-produced by the built and

material environment.

38All of my informants in the chronic phase expressed their concerns about possible future emotional

relationships and about their sexual (unmet) needs. I have seen little evidence that issues surrounding

emotional relationships and sexuality are dealt with in the latter stages of the sub-acute phase and even

less so in the chronic phase which, due to the lack of privacy in such homes, might be difficult to establish.

The psychologist in the rehabilitation institution confirmed that this is an area of unmet needs.

30

CHAPTER 5: CHRONICITY OF THE BUILT AND MATERIAL ENVIRONMENT

This chapter investigates how my informants’ chronic identities were composed in

relation to the built environment and its resulting practices (von Peter 2013). The spatial

set-up of both institutions replicated the acute – chronic divide, as the rehabilitation

institution was designed much like a hospital environment, with the purpose of

temporarily hosting stroke survivors, until they are well enough to be discharged. The

spatial set-up of the nursing home, in contrast, conveyed the characteristics of chronicity,

where a stable and long-term living environment was promoted. This division was

apparent in the institutions architecture, their spatial segregation, the availability of

communal spaces, and the set-up of the rooms. What becomes clear is that the chronicity

of the built environment fosters exclusion, as chronic sick are “the other to able-bodied

people” (Maynard 2010: 208) and ‘hidden’ and isolated in such homes. This in turn

prevents residents to recover a meaningful and contributing life.

5.1 LOCATION AND ARCHITECTURE

Both institutions were located in South-East Amsterdam: the nursing home in Gein and

the rehabilitation establishment in Diemen. The latter was located near a main road,

easily accessible from the city centre, and hence conveying an urban feeling. As this

institution was built in the mid-90s, its architecture was modern, with three to four high

rise buildings39 constructed in a circular compound set-up. The buildings were suffused

with light and the ground floor was openly built, transmitting the impression of lightness

and space, with views onto the water. Every building accommodated several so-called

‘towers’, where different pathological needs were catered for. The tower I conducted my

research in was called ‘Blumentor’ where mainly neurological rehabilitation clients were

treated. I was based on the first and second floor, whereby the first floor mainly saw

passing through stroke patients. Long stay and chronic (stroke) patients, were located on

the second floor.

The nursing home in contrast was located in a residential suburb and the

architecture replicated the 70s style: a long-drawn-out and contorted four storey

building, where the interior was not well lit and the ground floor conveyed a rather

39 Please refer to Appendix C for pictures.

31

cramped impression. The first and second floor accommodated residents who needed

24/7 care; the third and fourth floor promoted an independent living environment. The

architecture as well as the location of both buildings replicated the acute – chronic divide

as the temporality of recovery was promoted by the rehabilitation institutions' modern

and spacious set-up, as well as the close proximity to the city centre. Chronicity in contrast

was co-produced by the rather old, dark and contorted interior architecture of the

nursing home and the quiet residential surrounding. A further in-depth exploration of

each institutions spatial design will draw upon the importance of the divide in regards to

the co-production of my informants’ chronic identities.

5.2 CHRONICITY OF SPATIAL DESIGN: GROUND FLOORS

The ground floor in both institutions functioned as the ‘productive’ and socialising space,

where therapy and training rooms, a hairdresser, the computer rooms, a restaurant, a

shop and a café were located. The difference however was produced by the spatial design:

As mentioned above, the ground floor of the rehabilitation institution was suffused with

light as it was open planned, where the main corridor was lined with comfortable

couches, inviting clients and their visitors to rest and socialise. However, the small café

was the favourite socialising spot for clients and professionals alike. The ground floor in

the nursing home, in contrast, was rather dark and narrow, and henceforth residents

preferred to socialise in the outdoor smoking and adjusted non-smoking area, where they

could enjoy the sun and observe the hustle and bustle.

Thus, residents in both establishments appreciated one material environment

over the other (Pols 2005). The ‘acute’ and the ‘chronic’ identities of my informants were

furthermore co-produced by the spatial design of the ground floor. Chronicity in the

nursing home was further produced by the scarcity of funding, as there was only a rather

smallish therapy area available, with only two physiotherapists, one logo-, and one

ergotherapist in charge for more than one hundred residents. This contrasted sharply to

the dozens of therapists, the many therapy rooms, and the well-equipped gym in the

rehabilitation institution. The acute-chronic dichotomy therefore was indexing the access

to rehabilitative resources, as investment in such a nursing home was deemed to be

unnecessary. The availability of funds was also reflected in the spatial design of the floors

in both institutions.

32

5.3 CHRONICITY OF SPATIAL DESIGN: THE FLOORS

The first and second floor40 of the rehabilitation institution presented a similar set up:

single rooms41 for clients, one nurse room, one dining and one living room. The dining

and the living room presented the communal spaces on the floors, most of the socialising,

however, happened in the former. In each dining room there was a large kitchenette42

located, which made the room more homely. Clients and their relatives, as well as the care

personnel regularly used the kitchen to warm up or cook food. The interaction in these

social spaces differed quite dramatically between those two floors: clients dominated the

dynamic on the first floor, as jokes and laughter were a constant companion during meal

times, and the enjoyment of eating and spending time together was quite traceable, which

in turn contributed to a strong group solidarity. On the second floor, in contrast, the

nurses dominated the dynamic of that dining room, due to the connected nursing room,

and due to the need of having to keep a watchful eye on the residents during mealtimes.

Henceforth, the social interaction between the clients was a passive and quiet one, as most

of them were severely cognitive and bodily impaired. It can be argued that the more active

and able-bodied residents on the first floor, as well as the care personnel on the second

floor functioned as social navigators through which the lived reality on the floor was co-

produced (Vigh 2009). This contrasted starkly to the lived reality in the nursing home,

where not only the care personnel, but also the built and material environment co-

produced the chronic identities of the residents.

Every floor in the nursing home consisted of thirty-two apartments, two nursing

rooms, administration offices, and a doctor’s office on the second floor. The first floor

accommodated a communal area and an enormous terrace, which sometimes functioned

as entertainment area, where during mild afternoons and evenings activities such as

Bingo were organised. I conducted my research on the second floor which did not offer a

communal space for residents. This was palpable in the atmosphere: everyone kept to

themselves and if they were not mobile enough to move around, they stayed all day in

40And I believe this is also the case for the floors in all the other towers. 41The rooms were small but comfortable and equipped with a single bed, a bed side table, a sofa chair, a

small coffee table and a big wardrobe. The shape of the room was rectangular. 42It was well equipped with stove, oven, micro-wave, grill, and with two fridges where clients and nurses

could store their food.

33

their apartment. In this respect it can be argued that the spatial design of the second floor

disabled the resident’s sociability (Pols 2005). The chronicity of the built environment

(Wiedman 2010), as well as its accompanied strategies (Segrott & Doel 2004),

contributed towards the resident’s immersion of illness, their isolation and loneliness.

Hence, the chronicity of the built environment hindered my informants from regaining

their lives by way of developing new meanings and purpose despite their gravely disabled

bodies (Slade & Amering et al. 2014). How the strategies of the built environment

produced the chronic identities of my informants comes in particular to the fore when

comparing the spatial design of the apartments with the room set-up in the rehabilitation

institution.

5.4 SPATIAL CHRONICITY VERSUS SPATIAL TEMPORALITY

All apartments in the nursing home were equipped with a private disabled bathroom, a

kitchenette and a living/sleeping room with an adjustable single bed, a dining table, a

night table and a few chairs for visitors. Therefore, the apartments were designed to

function as residential homes, providing a dignified and comfortable living environment,

with the advantage of a 24/7 care provision service. However, as most of the residents

were immobile, gravely disabled and hence dependent upon the care personnel, the

apartment doors were kept open during the day. For the more mobile residents the

institutionalised care strategies contributed to a rather unsatisfactory and uncomfortable

living situation, as they often felt observed with an accompanied feeling of loss of their

privacy. For complete immobile residents, on the other hand, the open doors were the

only way to be part of the daily life on the ward. They therefore appreciated daily life in a

passive and observing way, whereby their appreciation was co-produced by the

restrictions of the built environment and social others (Pols 2005). Henceforth, the

chronic ‘being’ of residents were composed in relation with the care personnel

observational strategies, but also by the spatial set-up of the apartments (von Peter

2013). However, the state of being chronic is not a static one, as for instance, mobile

informants tactically escaped the observational nature of the care practices by way of

leaving their apartment, and also the nursing home for some time.

It was not so much the room door, but rather the unlockable bathroom door which

contributed to the clients’ loss of privacy in the rehabilitation institution. The room set-

up resembled the ones of (private) hospital rooms: they were small but comfortable and

34

equipped with a single bed, a bed side table, a sofa chair, a small coffee table and a big

wardrobe. Clients shared a disabled bathroom with their neighbour, whereby the two

bathroom sliding doors leading to each room were not lockable. It therefore frequently

happened that nurses came into the room from the bathroom without knocking. This was

in particular problematic for long stay clients on the second floor. My informants’ reduced

the time in their rooms as much as they could, by socialising in the dining room, in the

ground floor café or by checking their emails in the computer room. Even those who were

not as mobile tactically escaped by quietly spending their days in the dining room with

other immobile residents.

In this way it can be concluded that the apartment and room set up in both

institutions resembled the acute – chronic divide, as the spatial design of the apartment

in the nursing home fostered chronicity and the residents’ immersion of illness by way of

sustaining social isolation and boredom. The rather hospital like set-up of the rooms in

the rehabilitation institution, in contrast, resembled the biomedical understanding of

acute, for the unlockable bathroom doors can be regarded as a sign of temporality, where

the lack of privacy was the price clients needed to pay for being rehabilitated back to

‘normality’.

5.5 SUMMARY

The spatial set up of both establishments replicated the acute-chronic dichotomy: on the

first floor of the rehabilitation institution a palpable optimistic atmosphere was

prevalent, where clients and care personnel were optimistic about the recovery process.

In contrast, on the second floor, and more so, in the nursing home, a rather passive and

negative atmosphere was prevalent. The optimism for recovery was replaced by the

chronicity of everyday life, which was constituted by the mundane and unstructured days,

resulting in boredom and social isolation. The acute-chronic divide was furthermore set

in stone in the actual architecture, and in the interior design in both institutions: due to

sufficient funding, a quick recovery was fostered by the modern, well-lit recovery

rehabilitation environment, as well as by the well-equipped therapy and training units.

Scarce funding, in contrast, contributed to an old and not well-lit nursing home

environment, where the lack of therapeutic and care resources contributed to the

residents worsening of their life quality, as well as to the establishment of their chronic

identities. Consequently, the built environment, as well as the availability of funds, not

35

only constituted the economic, environmental and political facts of chronicity, both

factors also functioned as the social navigator in the production of care and therapeutic

strategies which my informants combated with certain tactics of resistance. The chronic

identities of my informants were also co-produced by the politics of time and timing.

36

CHAPTER 6: CHRONICITY OF POLITICS OF TIME AND TIMING

This chapter explores how the acute – chronic dichotomy is reflected in the use and the

experience of time. Those who are the powerful, employ a politics of time and timing -

which Ferzacca (2010) terms ‘chronopolitics’ - by way of regulating daily routines (ibid:

157). Chronopolitics was used in both institutions as a means of social control, for the

daily institutionalised routines were marked by either a heavily structured routine in the

rehabilitation institution, or by the non-structured daily rhythm in the nursing home. As

such my informants found themselves at the mercy of the daily routines, as well as the

chronopolitics of the therapy and care provision. Chronopolitics therefore was co-

responsible for my informants’ chronicity. What follows is an exploration of how my

informants experienced the politics of time and timing, and which tactics they employed

in order to cope with such.

6.1 CHRONOPOLITICS OF DAILY ROUTINES

Daily routines in each institution were structured around core assemblages of

morning/evening hygiene, medical regimen, meal and resting times. The major difference

however can be found in the way how these core routines were implemented and

executed. Life on the first floor in the rehabilitation institution was organised around

therapies, with three therapy sessions43 scheduled in the morning and three therapy

units organised in the afternoon. The therapy schedule in turn was organised around the

institutional core routines: breakfast from nine-thirty to ten-thirty; lunch44 at twelve-

thirty and resting times45 after lunch until three in the afternoon. From three onwards

there were group activities, therapy sessions or doctor meetings on the agenda. Dinner

was arranged at six in the evening, after which the residents had free time. The routines

on the second floor differed in regards to the therapy schedule, as chronic residents

received therapies only occasionally. Their days therefore were rather unstructured, with

meal and resting times as the only fixed anchor points (Charmaz 1991: 244).

43Each therapy session lasted for thirty minutes. 44Lunch and dinner was served in the dining room on each floor. During lunch I was able to observe my

informants interaction with each other. 45 Resting times were considered as important, especially for stroke patients. The medical director

confirmed that in order to guarantee the best recovery outcome the brain has to be given ‘out times’ with

no sensational input: “Sometimes I tell clients that they have to close their eyes for a few minutes in order

for them to be able to focus and concentrate again”.

37

Although the core assemblages of daily routines were of course a constant in the

nursing home, its implementation was much more flexible. This was mainly due to the

fact that lunch was the only meal per day which the institution provided. Henceforth, the

provision of food for breakfast and dinner was the residents (or their families) own

responsibility, and eating times were aligned to the residents schedule. However, as most

of them were unable to cater for themselves, they were dependent upon the carer for

these meals too. Therefore, usually breakfast took place at around nine-thirty, lunch at

twelve-thirty and dinner at six in the evening. However, due to chronic understaffing,

breakfast and dinner time schedules shifted regularly for up to two hours, which not only

left the residents hungry, it also affected their medical regimen. It can be reasoned that

the acute – chronic dichotomy was mirrored in the core assemblages of both institutions:

sufficient financial funding guaranteed a smooth running of the daily routine in the

rehabilitation institution, whereas insufficient funds, constituted the chronicity of

understaffing in the nursing home, which in turn contributed to a rather irregular core

routine.

In the nursing home certain institutional strategies were employed in order to reduce

the pressure upon the chronic exhausted care personnel, and to make the daily routine

run smoothly. For instance time regulations for the evening hygiene should prevent

residents to fall asleep too early and as a consequence have a restless night. However, Mr

Kaanu perceived those strategies rather as a control technique:

They always want to have the last word. If it’s my wish (to brush his teeth at

18:00) they should listen to me. Everything you ask they don’t do, they have

a different opinion. I hate to be dependent!

In a way the carers strategies disempowered Mr Kaanu, as he lost agency upon his

decision making. He resisted, however, by way of ‘using’ visitors (e.g. me) for his purpose,

e.g. to brush his teeth at the time he thought was appropriate. Not only did Mr Kaanu use

tactics in order to resist the chronopolitics of daily routines, it was also the care personnel

themselves who resisted the LTC policies by way of employing tactics to cope with the

chronicities of understaffing. Silencing residents was another cope mechanism employed

by the care personnel.

38

6.1.1 STRATEGIES OF SILENCING

Thomas once told me that it is best to shut his mouth, as “carers always have the last word.

It’s better to shut up and let carers talk over you”. Henceforth, his chronic identity was co-

produced through the interaction with the dominant care personnel (Pols 2005), which

Mr Osei’s case further illustrates

One afternoon I witnessed a major argument between a Surinamese carer

and Mr Osei, regarding his laundry. At first Mr Osei argued and tried to

explain his opinion to the carer. She tried, in turn, to make him understand

why it was necessary to have his clothes labelled. The argument went on for

at least 20 minutes. This situation became very heated and the carer ever

more dominating. At some point, Mr Osei just kept silent. I could see in his

facial expression and body language how much he disagreed with what she

said, how much he wanted to defend himself. When the carer eventually left

the room, he started to cry. He tearfully told me “They want to force their

will upon me, they treat me like a child. I will never let them rule over me!”

(Notes, 22/04/2013)

In order to not give up his authority, Mr Osei, and all the other informants, employed

certain tactics of resistance to enhance their quality of life in one way or the other. For

instance when Mr Osei encountered the above incident he involved me in order to

strengthen his argument

Tell her what you have seen last time, that she (his social worker) took two

bags of my clothes downstairs and till now (two weeks later) I did not

receive them back. Tell her! Tell her!!

His body language was emphasising on the importance of getting me involved as he was

facing and aggressively pointing towards me when he was talking to the carer. Whereas

when he spoke to the carer he was often just staring at the floor. Thus, he tactically used

me in order to make him heard.

Taking the above into consideration it can be argued that the employed

institutionalised chronopolitics fostered a hectic and dynamic therapeutic rhythm on the

first floor in the rehabilitation institution, where patients were encouraged to work on

39

their health, with the aim to re-establish their ‘normal’ self (Ferzacca 2010: 160-162).

This therapeutic rhythm in turn conforms to the concept of clinical rehabilitation, where

a patients recovery is enhanced, hence “[resting and therapy] time is invested to re-

establish a [patients] capitalist productivity” (ibid). In contrast on the second floor, and

even more so in the nursing home, chronopolitics were responsible for the irregular and

unstructured daily routines. As such, the politics of time and timing contributed to the

residents’ disempowerment, with a loss of autonomy and an immersion of illness as an

outcome. Furthermore, the lack of funds and the non-availability of therapies or

structured activities, fostered the chronicity of social isolation and boredom in the

nursing home.

6.2 CHRONOPOLITICS OF BOREDOM AND SOCIAL ISOLATION

The most frequently mentioned reason for the experiencing of boredom was an

unstructured daily routine, which was coupled with a lack of variety. Mr Kaanu for

instance mentioned that “I only sit in my chair all day, staring out the window and do

nothing… I wanna go out”46. This was also confirmed by Dominik who complained that

only the therapies offer some distraction but

then nothing. I only see this place, this people, this environment and nothing else.

I have to stay in this one [wheel chair] all-day. It is very, very tiring.

I saw residents sleeping in their wheelchair, when awake staring at a wall or out of the

window, and for many the television programmes were the only other alternative to

combat boredom. As such all these factors informed and navigated my informants lived

experiences by way of restricting their daily routines which was also reflected in the

futility of day care activities as Emiel confirmed

Today it was nothing to do at day care. I was sitting in my chair all day and

waited till it was time to go. Here day activities are not purposeful. We don’t

create or do something purposeful.

The consequences of boredom, of the unstructured daily routines and activities caused

Emiel, and many other residents, to develop depression and suicidal thoughts. Despite

of all the difficulties encountered, my chronic informants employed certain tactics in

order to better their quality of life. For instance, in order to bring some variety in his life,

46As mentioned in the methodology section, I took my informants ‘out for a walks’ in order break up their

boredom.

40

Emiel stationed himself near the main entrance where he could observe the coming and

going, and where he had the chance to interact with strangers. He employed this tactic

to “feel that I am not dead, that I am still alive”, and to temporarily navigate himself out

of the imposed social isolation and to gain some control back over his practices of

sociability. Mr Osei escaped the chronicity of boredom by way of attending day care

activities three times a week, which were organised by the Ghanaian organisation

Akwaaba47. This he did by driving the short distance from and to the organisation with

his scoot mobile. He was also frequently visited by a bible group, his social worker and

his friends. Hence, his own mobility and his social network functioned as navigators out

of boredom and social isolation.

In this respect it can be concluded that the politics of time and timing functioned

as a form of social control, as chronopolitics were employed in order to organise the daily

routines in both institutions (Ferzacca 2010). These chronopolitics in turn are informed

by the acute – chronic distinction, as the hectic therapeutic rhythm of the rehabilitation

institutions reflected the temporality of clinical recovery. The unending nature of

chronicity, in contrast, determined the daily routines in the chronic institution, where

days were perceived as endless and repetitive, causing boredom and social isolation.

The acute and the chronic ‘being’ of stroke survivors thus were composed of relationships

with other, more powerful social actors (e.g. the care personnel). These powerful others

played an important part in the co-production of the residents’ daily reality, their

navigation through the daily routines, and of their active or passive sociability (von Peter

2013: 54, Vigh 2009, Pols 2005). As such stroke survivors’ identities were constantly

changing in accordance to different situations (ibid), which the next section further

illustrates.

6.3 CHRONOPOLITICS OF THERAPY AND CARE PROVISION

In both institutions chronopolitics not only regulated the daily routine, the politics of time

and timing was also responsible for prolonged waiting times, for the institutional

compressed therapy agenda, and the (non) vital rhythm (Ferzacca 2010: 160). As such

these human timescapes, with its temporal modes of length and rhythmicity, functioned

as a form of social control in both establishments (ibid).

47Akwaaba provides home care and day care services for mentally and physically disabled Ghanaians.

41

6.3.1 WAITING TIMES

In the rehabilitation institution waiting time was induced by the rather unscheduled

therapy agenda as only a few therapies were planned and agreed in advanced, leading to

prolonged waiting times which Mr Olm confirmed

B: The planning for physiotherapy is for four times a week, and ergo three times

a week. At the moment I am not quite sure [when the therapies take place] as I

am waiting for the agenda. But what really is sure for the moment is that I have

two times this week physiotherapy, but may be more. I am waiting for the

agenda

M: The agenda will be given to you every Monday?

B: No sometimes in the morning they say ‘well physiotherapy is at ten or at

eleven. And every morning you can hear when the physiotherapy or the ergo

therapy is, but not for the whole week. I am just waiting. I just wait all the time.

The politics of time and timing, therefore “[is] experienced as instruments of power in the

context of therapy” (Ferzacca 2010: 157). According to the institutionalised logic it was

assumed that there was no need to inform Mr Olm, or all the other residents for that

matter, about the daily changing of the therapy agendas, as clients were expected to be

flexible, adherent, compliant, and focused upon their therapeutic regimen. In this respect

chronopolitics fostered chronicity, as whilst waiting for the daily therapy schedule, clients

were restricted in their movements and hence transmuted into chronic beings (von Peter

2013). Mr Olm filled these prolonged waiting periods by watching movies which he stored

on his laptop, or by reading the newspapers. In a way he tactically used the imposed

waiting time for his advantage as the otherwise hectic daily schedule would have not

allowed him to have those enjoyable and relaxing moments.

In the nursing home waiting time had a much more serious impact upon my

informants’ quality of life, as it affected their physical, psychological and emotional well-

being. Waiting times for care personnel could span from twenty minutes up to six hours

or longer. For instance, Mr Kaanu and Mr Osei needed to wait for the carers in order to be

brought to the toilet, causing Mr Osei to lie in his own excrements for hours.

42

However, despite of feeling really bad, he was grateful when the nurse eventually put him

under the shower and made up his bed. Although he had such a dreadful experience, he

was also aware that the nurse was alone during the weekend. In a sense his judgement

and knowledge about why he needed to go through such an appalling situation gave him

agency to cope with the whole situation. Both, Mr Osei and Mr Kaanu, experienced

institutionalised strategies, which not only affected them, those strategies also affected

the nurse, who was the sole care provider on duty for thirty-two residents.

Waiting time in both institutions, therefore, was as much a construct of the politics

of time and timing, as it was socio-politically produced. This in turn co-produced my

informants’ chronic identities. Institutionalised chronopolitics played also an important

part in the construction of the therapeutic and vital rhythm in each institution.

6.3.2 COMPRESSED THERAPY AGENDA VERSUS (NON) VITAL RHYTHM

The timescapes of compressed therapeutic rhythms in the rehabilitation institution, and

the non-existence of vital rhythms in the nursing home, were important navigators in the

illness experience of my informants. The former experienced through compressed

therapy sessions of thirty minutes and the tight therapy schedule of the professionals; the

latter through the irregularity of the medical regimen. The tensed therapy agenda in the

rehabilitation institution impacted upon the (felt) quality of the provided therapies, as

exercises were often dismissed or discontinued, due to the tight therapy schedule of the

professionals. This was especially the case with severe cognitive impaired or freshly

admitted clients. Mr Suso’s case study will illustrate my observations further.

Mr Suso, suffered two strokes, whereby the second left him severely cognitive and

bodily impaired: right side brain damage causing a total paralysis of his left body side;

severe aphasia, the loss of rationality and emotions, as well as no disease recognition. His

short term memory was affected and he suffered from apnoea syndrome, causing

constant tiredness as his breathing regularly stopped for a few seconds. Full recovery was

unlikely, in contrary; his prognosis was rather bleak with the likelihood of becoming a

nursing case for the rest of his life. His therapy focused on ADL training, on aphasia

therapy, and on the strengthening of his healthy body side. I was

43

able to observe the whole therapy range and the time issue was especially prevalent

during the Ergo-, and Logotherapy.

Ergotherapy:

During therapy sessions, I experienced the ergo-therapist as a very calm, quiet and

positive person. T-shirt training48 was one of the exercises where the-therapist needed

to explain every step of the T-shirt dressing procedure for several times so that his brain

could memories these steps. This was at times difficult as his condition also caused him

to lose control of his actions, resulting in frantic and aggressive bodily movements, which

needed to be physically stopped by the therapist. What also contributed to Mr Suso’s

frustration was the shortness of the therapy session, as when he finally managed to take

off his shirt, it was already over. It may have been advisable to adjust the therapy duration

according to Mr Suso’s physical and cognitive needs, e.g. by extending the therapy

duration to one hour. However, the tight agenda of the therapists made a more flexible

approach impossible.

Logotherapy:

The Logotherapist usually picked Mr Suso up from his room (in his wheelchair) and

brought him downstairs to the therapy room (which itself took up several minutes of the

therapy time). One time she came late and shortly after the therapy started she needed to

pick up the phone for several times. This not only interrupted the flow of the therapy, it

also caused loss of time. When the therapy finally continued, only twenty minutes were

left, and the time pressure was palpable throughout the therapy session. A sense of being

rushed, and an atmosphere of restlessness was traceable throughout all the other

logotherapies.

These two short extracts bring the inequality of time and timing to the fore: on the

one hand residents needed to endure long waiting times and uncertainty regarding the

therapy schedule. On the other hand, the therapy sessions were often felt to be too short

and not productive or demanding enough. Time and timing, therefore, not only shaped

48T-shirt training is part of the ADL training, where the basics of grooming, dressing and toileting are re-

learned.

44

the medical and therapeutic perception of patients, it also shaped the practices

of the medical professionals (Ferzacca 2010: 157), which was especially apparent in the

nursing home.

A regular time schedule for the administering of medication is of utmost

importance in order to successfully manage stroke survivors’ co-morbidities and other

bodily symptoms. Hence a strict time schedule ideally should function not only as an

important therapeutic tool, but also should represent a vital institutional rhythm

(Ferzacca 2010: 160). Unfortunately, such a vital institutional rhythm was non-existent

in the nursing home, rather it frequently happened that drugs were not administered on

time, the wrong amount of pills were handed out, or none were in stock. This caused

bodily, emotional and psychological discomfort, especially for the residents who were

diabetic, a condition which requires as stringent adherence to the medical regimen

(Ferzacca 2010). The administration of insulin has to take place shortly before the

consumption of food, and regular eating times are therefore essential (ibid). However,

this strict regimen most often could not be followed due the busy routine on the ward.

As a result Emiel experienced distress when he was first admitted to the nursing

home. During the day he administered the insulin by himself, but in the evening when

already in bed, he had no access to the insulin which was stored in the kitchenette.

Therefore he was dependent on the nurses for the last insulin injection at night, and the

first in the morning. This was at times problematic as the care personnel could not attend

him every day at the same time. However, as the time span for the night insulin has to be

exactly calculated, it is vital to have the last injection administered on time 49 . This

irregularity prevented Emiel to establish a vital rhythm of regular eating and drug

consumption (Ferzacca: 160). In this regard, he experienced the chronopolitics of medical

regimen. Emiel solved this problem by taking the insulin injector with him to bed, stored

in a bag which he attached to the over bed hoist handle. In this bag he also stored his

phone and other important items, such as a spare set of medication. He therefore

employed a creative tactic of resistance, through which he not only overcame the

institutionalised timescapes and strategies, he also combated the strategies of the built

environment with its spatial segregation between kitchenette and bed (Segrott & Doll

49A too short time span can result in excess insulin, which in turn causes hypoglycemia. Hypoglycemia is

caused by low blood sugar, which results an inadequate supply of glucose to the brain (Ferzacca 2010).

45

2004). It has to be acknowledged that chronic understaffing50 made it impossible for the

carer workers to adhere to this strict medical regimen. Henceforth, the carers, as much as

the residents, were the victims of the political and economic facts of chronicity.

In essence, the politics of time and timing was responsible for the tight therapy

agenda in the rehabilitation institution, and likewise for the erratic drug distribution and

administration in the nursing home. Therefore, time in this perspective, can be regarded

as disruptive source of self-management, as time was manipulated by the professionals

to meet the institutional daily (tight) schedule and to smoothen the care provision

practices (Ferzacca 2010: 170).

6.4 SUMMARY

Throughout this chapter I aimed to demonstrate how the acute – chronic dichotomy is

replicated in the institutionalised usage of time and timing. As such I referred to the

term of chronopolitics, which according to Ferzacca (2010) is used by the powerful to

regulate daily routines in institutionalised settings. The daily routines in the

rehabilitation and nursing establishment were similar in their core structure, e.g. resting

and mealtimes, but differed significantly in their execution. The completely different

ways of implementation, however, replicated the acute-chronic divide as the daily routine

in the rehabilitation institution had fixed timings at its core, with a busy therapy schedule

organised around this core structure. This contributed to rather busy, hectic and

‘productive’ days, which were aimed to rehabilitate stroke survivors’ back to fit and

‘normal’ citizens. In the nursing home, in contrast, the characteristics of chronicity

were also apparent in the daily routine. The core daily routines were handled in a much

more flexible way, where residents often needed to wait for the care personnel in order

to receive their meals, or to have their personal and medical needs attended. The

different implementation modes have to be ascribed on how the acute-chronic divide

indexes health care resources, as the well-staffed rehabilitation institution stands in stark

contrast to the chronic understaffed nursing home, which in turn contributed to the

chronopolitics of care provision strategies: to the silencing of residents; to the

unstructured days; and to the chronic boredom and social isolation. My informants

combated the chronopolitics of the institutions therapy and care practices by way of

50As explained in Appendix A.

46

usefully filling the imposed waiting time, or by creatively inventing tactics in order to gain

some control, and to re-establish some form of vital rhythm in their lives. It can be

argued that my informants’ chronicity was determined by the economic and political

facts of the chronopolitics, which in turn was responsible for the experience of the

continuum of disruption of my informants’ post-stroke life-span. Having looked at how

the built environment and the politics of time and timing replicates the biomedical

understanding of chronicity, I now want to turn to the alternative concept of chronicity:

Chronicity of Life.

47

CHAPTER 7: CHRONICITY OF LIFE - THE CONTINUUM OF RECOVERY

Smith-Morris (2010) argues that in order to understand the experience of chronically ill,

not their punctuated duration of health has to be investigated, but rather their whole life-

span with its continuous disruption (ibid: 25). My informants’ life-spans’ were

punctuated by such disruptions, of which the onset of stroke was just another, though

major one. Their post-stroke lives continued to be disrupted, not only by the occasional

flare ups of their co-morbidities which often transmuted them back into an acute state of

being. It was also the institutions therapeutic and care provision strategies, as well as the

effects of the built environment, which contributed to my interlocutors’ continuum of

disruptions. This chapter therefore investigates the chronicity of my informants’ lives by

way of drawing upon the different stages in which they encountered disruptions: during

the acuteness of recovery process which was marked by uncertainty and fear to remain

permanently disabled. During the continuous punctuation of everyday life through

mundane and major disruptions which not only shaped their rehabilitation experience,

such punctuation also shaped the recovering process of their lives in general. These

disruptions therefore informed their past, their decision making in the present, and

guided their navigation towards the recovering of their lives (Vigh 2009).

7.1 ACUTENESS OF RECOVERY

Time was a major disruptive factor in my informants’ post-stroke life, and an especially

pressing one in the rehabilitation phase. For recovery goals and progress are closely

monitored in a certain time frame, which were regulated by specific medical standards.

In the rehabilitation institution, importance is laid upon clinical recovery that is to make

the client fit, productive and ‘normal’ as soon as possible (Slade & Amering et al. 2014).

Time, in this perspective, was used as a powerful tool for social control (Ferzacca 2010),

and the resulting time pressure contributed to my informants fear to continue their life

span as disabled persons. Henceforth, all worked very hard to prevent this to happen.

Maarten, for instance, mentioned that in order to get better quicker, one needs to adhere

to the rules of the house (e.g. resting times), and to strictly follow the therapy regimen.

If you listen to what they tell you, you have a good start. You shouldn’t try it

yourself. They give you tips how to walk best and they have experience so

you better do what they say. For instance, sometimes you have to bend

48

forward on the stairs, but then you fall down. And she [physiotherapist]

explained to me what to do and how to do it. And then it works. If I do something

I want to know why, and how.

Maarten embodied, what (Ferzacca 2010) and (Kitson & Dow et al. 2013) describe as self-

management practice, and Becker & Kaufman (1995) termed therapy regimen. As such a

patient is expected to be actively involved in the therapies, and to be willing to work on

behavioural and environmental adjustments (ibid). Maarten learned to implement his

post-stroke restrictions into his everyday life, by way of practicing how to climb the stairs.

Mr Suso, in contrast, was very negative about the time structure of this institution which

he then attributed to his progress:

I thought I will start the gym here… but nothing. In the first two weeks [since

admission] they did do nothing. This is too long! The others they are home by

now. What must I do here? What? Sleeping only? I don't see any improvements.

They don’t do nothing.

By comparing himself to other residents who already ‘left’, the feeling of ‘failure’ and one

of ‘staying behind’ was dominating his mood (Pols 2005: 205). Furthermore, he compared

his somewhat ‘abnormal’ body to the ones of his fellow residents which appeared to him

as ‘normal’ (Manderson 2010: 104). By employing the tactic of comparison, henceforth,

he performed and enacted his chronic identity (von Peter 2013: 14). In a way then, Mr

Suso embodied the discourse of clinical recovery (ibid) which in the case of stroke, is

determined by the politics of time and timely progress (Ferzacca 2010). His time

perception also contributed in the objectifying of his body, where, according to Doolittle

(1991), the shock of sudden immobility and paralysis left him “suspended in a passive

objectified body” (citied in Ellis-Hill 2000: 237). As such Mr Suso viewed his paralysed

arm in a passive and objectified manner.

My arm is terrible and sometimes I want to get rid of it [emphasised with cut off

motion]. I am tired of it as it is heavy and painful. I need to do exercises. Need to

do it five to six times a day and it will start coming back to normal. It takes too

long. The doctor said that in three to five months after stroke the hand shall be

back [to normal].

49

It becomes clear that the discourse of clinical recovery not only impacted upon Mr Susos’

perception of time and his understanding of normality, it also caused him to negatively

view and objectify his paralysed arm, which Charmaz (1991) terms ‘conceptional

packaging’. She argues that people treat their illness in the way they think and categories

about it (ibid: 67-68). Mr Suso wanted to cut off his paralysed and ‘abnormal’ arm because

he felt that time is running out for him to get better and to become ‘normal’ again. The

fear of continuing with life as disabled and dependent was imprinted in his actions,

practices and discourse. Mr Suso’s and Maarten’s acute rehabilitation experience was

marked by disruptions which were mainly caused by the chronopolitics of clinical

recovery, which also determined Maarten’s past experience.

7.2 CONTINUUM OF DISRUPTION

Maarten’s drive to get better was partly determined by his disturbing encounter with the

emergency services at the AMC, where he was first admitted after he suffered the initial

onset of his stroke. This incidence made him question the whole medical apparatus. Yet,

Maarten’s experience illustrates the continuous disruption which humans encounter

throughout their life spans.

Maarten suffered his initial onset in late February, which after running of several

standard tests by the neurologist on duty, appeared to be a TIA51. After several hours in

the neurological emergency unit, where his condition improved remarkable, Maarten was

sent home. However, during the night his symptom worsened and when he was rushed

back to the AMC the next morning, it was too late for the specialised Thrombolysis

treatment. The medical director of the rehabilitation institution acknowledged that if

patients improve on such dramatic scale, and if there are no clear signs of a clot on the x-

ray images, then a TIA is the common diagnosis. Maarten, however, was unfortunately

very unlucky as the clot was ‘hiding’, and according to the medical director, the worsening

of his condition could have happened in the hospital (during the night) as well. It can be

argued that Maarten encountered not the biomedical linear diagnosis process (e.g.

diagnosis, treatment and recovery), his experience was rather informed by the continuum

of disruption, as after his discharge from the hospital his symptoms worsened instead of

vanishing (Ferzacca 2010). This disruptive event led Maarten to develop a rather negative

perception of his time in the hospital

51TIA stands for Transient Ischaemic Attack or mini stroke.

50

I went to the hospital and they did several tests on me. They did scans and I had

a 'film', you know the rotating machine (MRI). They saw nothing. But if there is a

bleeding you first see that...so it was a stroke. So if they had taken precautions

straight away they could have avoided it…. Everybody saw [that I can’t walk

properly] except the doctor. All the treatments [at AMC] are very good, no

complains about that…..The nurses are very good. It was just one person... When

I got home it started to get worse. And then I was all night on the sofa…. and in the

morning I went back to the hospital but it was too late by then.

Maarten blamed the neurologist for the worsening of his condition. Hence feeding into the

biomedical discourse that doctors are omniscient, always in charge and aware of what is

best for their patients (Pols 2002). He also lost trust in the power of biomedicine, as the

neurologist failed not only to cure him, but to establish the correct diagnosis in the first

place (Good & Delvecchio-Good 1993:90). The temporality of the biomedical diagnostic

system, as well as the neurologist henceforth functioned as the navigator for the

establishment of Maarten’s chronic identity (Vigh 2009).

This disruption continued to influence upon his experience in the present, as he

was working extremely hard during therapies, and whilst exercising independently, in

order to be able to continue with his many hobbies in the future. In order to do so the aim

was to gain some movements back in his paralysed right arm and hand. He was also

extremely keen to be able to walk the stairs in his house, so that he was not required to

sleep on that sofa on the ground floor, which certainly brought back the memories of this

significant disruptive night, which he associated with life threatening fears, dependency

and disabilities. Maarten therefore not only suffered one significant or disruptive event,

which informed his post-stroke illness experience, rather, past disruptive events mingled

with disruptive events in the present, in turn informed his future which, at this stage,

was focused upon the bodily recovery. This contrasted the chronicity of life of my ‘chronic’

informants, as due to the non-improvement of their bodily symptoms, their recovery was

rather navigated by the aim to re-establish a dignified and purposeful life.

51

7.3 CHRONICITY OF LIFE: TOWARDS A RECOVERY OF EXISTENCE

Chronicity not only highlights the duration of health, it also draws upon chronic structural

factors (e.g. discrimination, racism, or lack of access to health and rehabilitation

resource), and the human lifespan in general (Ferzacca 2010: 158, Smith-Morris 2010:

37). It is therefore important to employ such a holistic analytical lens when wanting to

understand how past disruptive events informed the lived reality of my informants’ in the

nursing home, which in turn fostered their desire to establish a satisfying and meaningful

life outside this institution. As such, all of my informants worked hard towards the

recovery of their lives, which included the acceptance, and hence, successful

incorporation of their post-stroke disabilities which the following three accounts further

demonstrate.

Mr Osei

Mr Osei’s life-span was informed by migration to and from Ghana. He first migrated to

Nigeria in the 70s due to the economic crisis in Ghana in order to work as a lorry driver,

and a few years later he was repatriated. In 1991 he migrated to Europe, where he sought

unsuccessfully for asylum in East Germany, later in Belgium until when in 1992 he finally

arrived in Amsterdam. He married twice, had two daughters but lost both wives. For

the purpose of papers he paid a Surinamese woman in Amsterdam to get married. As soon

as he received the papers some four years later, he immediately filed the divorce, after

which he moved to the UK for the purpose of work. In 2008 his stroke onset occurred

when he was working for a cleaning company in Manchester, UK, where he also was

hospitalised and later institutionalised. He was transferred back to Amsterdam in 2012,

where he first was admitted to a nursing home in Haarlem, but soon was transferred to

the current nursing home. He then spent seven months with his daughters in Ghana,

where he also received herbal treatment, which however proved unsuccessful. His family

relationships were marked by jealousy and greed of his relative wealth; going back to

Ghana for good, therefore, was not an option.

His past experience influenced his present ones in the nursing home, for the

marriage with the Surinamese woman has shaped his perception of Surinamese people

in general. He called them ‘money eating’, as according to him, they spend their money

only on daily life expenditure. The (Surinamese) care personnel were unaware of his

52

capability to understand the Surinamese language when they shouted abusive words at

him during bathing times. This in turn made him aggressive towards them which resulted

in a general worsening of his situation.

In order to escape the care personnel abusive behaviour, and the disempowering

institutionalised strategies in general, Mr Osei employed certain tactics and navigators so

to be able to establish a new and independent life outside the nursing home. For instance

with help of his social worker from Akwaaba he applied for social housing. His social

worker, therefore, not only helped him navigate his way through the bureaucratic social

housing landscape, she also helped to apply for permanent visas for his daughters. The

social worker furthermore functioned as social navigator between Mr Osei, the carers and

the nursing home management. Mr Osei’s journey towards personal recovery, henceforth,

was driven by his desperate wish to live a dignified life, and to take up his role as lone

parent again.

Dominik

Migration from Togo to the Netherlands equally disrupted Dominik’s lifespan. Ever since

he arrived some seventeen years ago, he faced discrimination and racism. As his medical

degree was not recognised at a Dutch University he obtained a diploma as a

pharmaceutical representative, which did not lead him to a job position. Instead he

needed to support himself through ‘dirty’ and low paid jobs. His past experiences caused

him to develop adverse feelings towards Dutch employment policies

They push you just to get 'any' job. They ask you to do things which are not for

your level (of education). For instance, if you finish your study and if you want to

find a job, they force you to do everything, otherwise they stop paying (job seeker

allowance). I was looking everywhere for a job. In Holland they are the bushman

from Europe!

Yet, he never stopped hoping and working towards his aim to become a plastic surgeon,

which was also the main drive for his personal recovery. Dominik suffered the initial

stroke onset some nine months ago (August 2013), which left him severely cognitive

and bodily impaired, namely wheelchair bound and his left arm paralysed. Although he

53

was well aware of the medical implications of his condition 52 , his hope for personal

recovery included traditional healing through which he anticipated to regain his mobility.

Dominik, therefore, employed hope as a navigating tool in the management and

construction of his future personal recovery goals. In this respect Dominik also hoped to

be able to form an emotional and sexual relationship, leading to the establishment of a

family.

The chronicity of my migrant informants’ lives’ was informed by socio-economic

and political facts, which can partly explain their employed disease practices in the

present. These facts also informed their future as they were well aware on how to ‘exploit’

the Dutch welfare state (DWS) by way of applying for disability allowances or pension.

Hence they poached in the terrain of the powerful DWS. The biographies of my Dutch

interlocutors were equally marked by many twists and changes.

Emiel

Emiel encountered many disruptions in his life: from the early death of his maternal

mother to the re-marriage of his father, with the result that his step mother emotionally

abandoned him. He was married twice, whereby his first wife prohibited him to see his

children after their divorce. This was a major emotional drawback which caused him to

start to drink heavily for almost two years. At this time, only his work kept him ‘alive’,

which he spoke very fondly of. Soon after he stopped his excessive drinking habit, he

established his own successful tax return office some twenty years ago, and he also re-

married and became a father of a daughter. The stroke undoubtedly was the biggest

disruption in his lifespan as

I lost everything. The first thing I had to put away was the car. Then I lost my

office and then I lost my freedom to go do some things.

Emiel’s previous work experience was also the main ambition for his personal recovery,

as he planned to re-establish his tax office. Unfortunately his wife and the medical

professionals discouraged him in this endeavour, as according to them, Emiel would not

be able to cope with a demanding business. In a way, his wife and the medical

professionals co-produced Emiels chronic identity by way of redefining his former

52 To stay invalid for the rest of his life.

54

successful business self into an incapable chronic one (Eristroff 1993: 259). As such it was

expected that he should come to terms and accept his ‘new’ chronic identity, which Emiel

did not:

They say that I have to accept it [his stroke disabilities and dependency]. I will

never accept it as otherwise you don't fight anymore. You have to fight to come

through that, otherwise you better be dead. But I fight on. I want to have my

own life again. I am too young to do nothing anymore. I can go on for 30 years

perhaps.

Henceforth, the ones who advised Emiel against his future plans (e.g. his wife and the

medical professionals), as well as his own non-acceptance of his situation, functioned as

social navigator through which Emiel moved towards a fulfilled life (Vigh 2009). His

personal recovery, therefore, involved the development of new meaning and purpose in

his life, which also entailed the establishment of a meaningful emotional relationship,

either with his wife or with a new partner.

7.4 SUMMARY

My informants’ lifespans were punctuated with continuous mundane or major

disruptions, which all can be considered to be fateful moments53 at the time they occur.

Stroke was just another one, which of course was always a life changing experience. My

informants employed different tactics, and they went through different stages when

attempting to recover their lives: the acuteness of their rehabilitation experience which

was marked by the temporariness of clinical recovery. A continuum of disruption was

then experienced which was mainly connected to the acuteness of their recovery. The

chronicity of life in contrast determined the future determination of my informants in the

nursing home. Nevertheless, all of my informants’ chronicity of stroke was a lifelong

process of daily adjustments, improvements, and identity work (Smith-Morris 2010, von

Peter 2013). Therefore, rehabilitation and recovery efforts, as well as the LTC policies,

might be advised to let go of the temporariness of clinical recovery. Rather, stroke

rehabilitation should be based upon survivors’ lifespan, holistically including the social,

53Giddens (1991) termed fateful moments to be “phases at which things are wrenched out of joint, where a

given state of affairs is suddenly altered by a few key events (ibid: 113).

55

relational, somatic symptoms and disruptions, which are partly co-produced by

structural factors.

56

CHAPTER 8: CONCLUSION

This study set out to explore how the acute-chronic binary produced chronicity, and how

the latter was influencing my informants’ stroke illness and after care provision

experience. Stroke can be regarded to be acute at the initial onset, and chronic ever after

as its post-stroke disabilities are unending. Health-care and rehabilitation resources, as

well as stroke survivors’ access to such are divided accordingly. Throughout this thesis I

demonstrated that the acute-chronic distinction determines the Dutch LTC policies, the

built and material environment of care institutions, and the employed institutional time

regimen. All these factors in turn constitute the institutionalised care and therapy

provision strategies which not only co-produced survivors’ chronic identities, they also

shaped the poaching and resistance tactics of stroke survivors’ when attempting to create

space in the terrain of the powerful. This they did by strategically employing social

navigators, who helped to navigate stroke survivors’ ways towards their personal

recovery.

In order to analyse my informants’ post-stroke experience I have employed

several theoretical concepts. As mentioned above, the Acute-Chronic Distinction

provided the overarching framework through which the other theoretical building blocks

developed. This study unravelled how the chronic identities of my informants were

promoted by this binary, as when there is no more clinical and bodily improvement to be

gained all of them were banished, hidden and isolated in nursing homes. I attempted

to deconstruct the biomedical understanding of Chronicity – that is one of linearity and

temporariness – by way of employing the alternative concept of Chronicity of Life, which

rather is concerned with a human lifespan's continuum of disruption. Mundane and

major everyday disruptions not only affect a sick persons’ lifespan, such

disturbances interrupt all human lives as they are partly constructed by wider socio-

economic and cultural factors. Migration, discrimination and divorces, as well as the

onset of their stroke and the resulting institutionalised therapy and care provision

strategies were some of the disruptive events my informants encountered throughout

their lifespans. These disruptions therefore informed their experience and actions in the

present, which in turn navigated and informed their future outlook. As such, the

concept of Chronicity of Life not only critically investigates the biomedical understanding

of chronicity, but this alternative interpretation also questions the widespread

57

anthropological and sociological conceptualisation of the (biographical) disruptive

nature of chronic illnesses (see for example Bury 1981, Giddens 1991, Charmaz 1991,

Becker & Kaufman 1995, Ellis-Hill 2013). Henceforth, I follow Smith-Morris &

Manderson’s (2010) line of reasoning that instead of narrowly focusing on the

temporality of illness disruptions, pragmatic health solutions have to be developed which

holistically encompass the social, somatic and emotional facets of a chronic sick person.

The Personal Recovery Model with its focus upon lifelong identity work might function as

starting point.

Current recovery therapies for stroke survivors are primarily aimed to clinically

rehabilitate the post-stroke body back to ‘normal.’ The acuteness of diagnosis plays a

fundamental role for the post-stroke outcome, as through an effective acute treatment,

the potential life threatening disease is transmuted into a chronic one. The

recovery prognosis, however, is as much dependent on socio-economic factors (e.g.

proximity of specialised stroke unit), as it is on medical (e.g. extent of bleeding into the

brain) and technical (newest diagnostic machinery) ones. Furthermore, the impacts of

post-stroke symptoms and disabilities are never just confined to the body but are spread

upon the wider social environment of a survivor. My informants reported a lack of

support in social, emotional, interpersonal and sexual matters, and this often caused

additional distress which several studies acknowledged (Becker & Kaufman 1995,

Ellis –Hill 2000, Pols 2002). The concept of recovery includes the aforementioned

factors in the ongoing rehabilitation process of stroke survivors’ lives. Unfortunately I

have seen little evidence that such a holistic approach was implemented in the

rehabilitation institution, and even less so in the nursing home. Rather, the chronic

identities of my informants were solidified by both, the chronicity of the built and material

environment, as well as the institutionalised chronopolitics of daily routines. By its very

nature, the acute – chronic distinction fostered chronicity through informing LTC policies,

which in turn were responsible for the chronic understaffing in the nursing home, thus

shaping the institutionalised therapy and care provision strategies. In order to cope

with these strategies my informants employed poaching tactics and social navigators:

they used their mobility to not only escape the institutionalised chronopolitics of daily

routines but also tried to regain some form of control over their sociability by engaging

with strangers, social workers and friends. In this way they used these tactics to combat

the imposed social isolation. Furthermore, my informants used social others in order to

58

resist the politics of time and timing in the nursing home. The chronopolitics of the

rehabilitation institution was responsible for both a hectic daily schedule but also for

prolonged waiting times. My informants usefully filled the imposed waiting times by

enjoying some relaxing and private moments. In a sense then, the LTC policies and the

institutionalised care and therapy provision strategies were the social navigators through

which not only the chronicity of my informants lived reality were constructed, but these

factors also impacted upon the daily work reality of the care personnel.

In summation then, this research attempted to highlight how the acute-chronic

dichotomy influences, if not determines, the post-stroke experience throughout every

stage in the after-care process, as it is mirrored in the LTC policies and its funding

procedures. These policies in turn not only govern the stroke after-care landscape, they

also index the access to health-care and rehabilitation resources. The acute-chronic divide

is furthermore reflected in the built and material environment of care institutions, the

institutionalised chronopolitics, the long-term care employment and the long-term care

educational standardisation. The aforementioned division therefore is reflected in macro

forces (e.g. LTC policies), which in turn constitute the chronicity of stroke.

Several limitations were encountered during this research. Due to the short-levity

of this study, only a small sample of participants could be recruited. As a result, this

research might be criticised for ” its lack of impact on policy-making and practice, its

limited payoff in the everyday worlds of politics and work” (Atkinson & Hammersley

2007: 17). However, the results of this research certainly contribute to the provision of

impulses and ideas on how to promote a holistic post-stroke recovery process, where

instead of focusing on the temporariness of clinical recovery, the survivors’ social,

relational and emotional environments, as well as wider structural factors, have to be

taken into consideration. The focus on institutionalised stroke survivor is certainly

another limitation, as the post-stroke after care experience in a survivors’ home setting

might be a very different one. Further research in the home care setting is needed in order

to address this limitation.

This study identified further implications for future research. First, it is of utmost

importance to investigate how stroke survivors are navigating their way through the care

landscape. Do stroke survivors and their families have agency to decide on a possible care

59

pathway? If not, who are the key players in the decision making? Although this research

addressed some of these questions, there is an extensive knowledge gap apparent.

Second, how the Dutch LTC policy reforms impacted upon a stroke survivor’s after-care

experience was already transparent during my research. However, further research is

needed to investigate the reforms impact in the years to come. How will care and nursing

homes deal with the even more tightening annual budgets, and in which way will this impact

upon the care provision, and hence the lived reality of residents? My interlocutors informed

me that since I have completed my research in the nursing home, the situation has

worsened, as the management were in need to dismiss more care personnel.

Unfortunately this prolongs waiting times even more before the care personnel can

attend the resident’s needs. This might be countered by incorporating residents’ informal

networks into the institutional daily routine. Third, further research has to be carried out

in the home care provision sector, as ever more responsibility is shifted to the formal and

informal home care sector. Are appropriate adjustments being made in order to cater for

the ‘in-between’ stroke survivor with an indication of ZZP 3-4/5? If so, how? Are home care

providers better equipped to cater for those in-between survivors, through for instance the

re-direction of funds? How does the informal network cope with the additional burden,

especially considering the lack of emotional and relational counselling provision?

This list is not an exhaustive one, rather it might function as a starting point in

order to scrutinise the boundaries which the acute-chronic distinction still imposes upon

our chronic diseased society. The boundaries between the (sub)‘acute’ and ‘chronic’

stroke illness classifications are not so much induced by the natural course of the disease

itself, but rather by the accessibility of health-care and rehabilitation resources. As such

the chronicity of the stroke illness experience is informed by powerful technological,

political and economic forces.

60

BIBLIOGRAPHY

AMIT-TALAI, V., 2000. Constructing the Field: Ethnographic Fieldwork in the Contemporary World (eds.). London etc.: Routledge.

ATKINSON, P. and HAMMERSLEY, M., 2007. Ethnography: Principles in Practice. (3rd

edn.). London: Routledge.

BECKER, G., 1998. Disrupted Lives: How People Create Meaning in a Chaotic World. Berkley and Los Angeles: University of California Press.

BECKER, G. and KAUFMAN, S.R., 1995. Managing an Uncertain Illness Trajectory in Old Age: Patients' and Physicians' Views of Stroke. Medical Anthropology Quarterly, 9(2), pp. 165-187.

BURY, M., 1982. Chronic Illness as Biographical Disruption. Sociology of Health & Illness, 4(2), pp. 167-182.

CAPUTO, V., 2000. At 'home' and 'away': Reconfiguring the field for late twentieth-century anthropology. In: A. VERED, ed, Constructing the Field: Ethnographic Fieldwork in the Contemporary World. pp. 19-31.

CHARMAZ, K., 1991. Good Days, Bad Days: The Self in Chronic Illness and Time. New Brunswick, NJ: Rutgers University Press.

DA ROIT, B., 2012. The Netherlands: The Struggle Between Universalism and Cost Containment. HEALTH & SOCIAL CARE IN THE COMMUNITY, 20(3), pp. 228-237.

DA ROIT, B. and LE BIHAN, B., 2010. Similar and Yet So Different: Cash‐for‐ Care in Six European Countries’ Long‐ Term Care Policies. Milbank Quarterly, 88(3), pp. 286-309.

DE CERTEAU, M., 1984. Practices of Everyday Life. Berkley, CA: University of California Press.

Dutch Healthcare Authority, 2013. From Fact to Focus: Annual Statement of the Dutch Healthcare System 2013. Utrecht: Dutch Healthcare Authority (NZa).

Dutch Healthcare Authority, 2012. Seperating Fact from Fiction: Annual Statement of The Dutch Healthcare System 2012. Utrecht: Dutch Health Care Authority (NZa).

ELLIS-HILL, C., PAYNE, S. and WARD, C., 2000. Self-body Split: Issues of Identity in Physical Recovery Following a Stroke. Disability and Rehabilitation, 22(16), pp. 725.

ESPING-ANDERSEN, G., 1990. The Three Worlds of Welfare Capitalism. Cambridge: Polity Press.

ESTROFF, S.E., 1993. Identity, Disability, and Schizophrenia: The Problem of Chronicity. In: LINDENBAUM, S. and LOCK, M.(eds.). Knowledge, Power and Practice. pp. 247-286.

61

FERZACCA, S., 2010. Chronic Illness and the Assemblages of Time in Multisited Encounters. In: MANDERSON, L. & SMITH-MORRIS, C., (eds.). Chronic Conditions, Fluid States: Chronicity and the Anthropology of Illness. United States of America: Rutgers, The State University, pp. 157-174.

GIDDENS, A., 1991. Modernity and Self-Identity: Self and Society in the Late Modern Age. Cambridge: Polity.

GOOD, B.J. and DELVECCHIO GOOD, M., 1993. "Learning Medicine": The Constructing of Medical Knowledge at Harvard Medical School. In: LINDENBAUM, S. and LOCK, M. (eds.). Knowledge, Power and Practice. pp. 81-107.

GRAY, A., 2003. Research Practice for Cultural Studies: Ethnographic Methods and Lived Cultures. London: Sage Publications.

GREEN, J. and THOROGOOD, N., 2011. Qualitative Methods for Health Research. London: Sage.

GREEN, J. and THOROGOOD, N., 2009 [2004]. Qualitative Methods for Health Research. Los Angeles, London, New Delhi, Singapore, Washington DC: SAGE Publications.

HAMMERSLEY, M. and ATKINSON, P., 1995. Ethnography: Principles in Practice (eds.). London: Routledge.

KITSON, A.L., DOW, C., CALABRESE, J.D., LOCOCK, L. and ATHLIN, ÅM., 2013. Stroke Survivors’ Experiences of the Fundamentals of Care: A Qualitative Analysis. International Journal of Nursing Studies, 50(3), pp. 392-403.

MANDERSON, L., 2010. "Half a Woman": Embodied Disruptions and Ideas of Gender Among Australian Women. In: MANDERSON, L. & SMITH-MORRIS, C., (eds.). Chronic Conditions, Fluid States: Chronicity and the Anthropology of Illness. pp. 96-112.

MANDERSON, L. & SMITH-MORRIS, C., (eds.). 2010. Chronic Conditions, Fluid States: Chronicity and the Anthropology of Illness. New York: Rutgers, The State University.

MAYNARD, R., 2010. Disability and Dysappearance: Negotiating Physical and Social Risk with Cystic Fibrosis. In: MANDERSON, L. & SMITH-MORRIS, C., (eds.). Chronic Conditions, Fluid States: Chronicity and the Anthropology of Illness. United States of America: Rutgers, The State University, pp. 195-211.

MOL, A., 2002. The Body Multiple: Ontology in Medical Practice. Durham, NC, etc.: Duke University Press.

ORGANSIATION FOR ECONOMIC CO-OPERATION AND DEVELOPMENT (OECD), 2011. Help Wanted? Providing and Paying for Long-Term Care. OECD Publishing: Paris.

62

PAOLUCCI, S., ANTONUCCI, G., GRASSO, M.G., BRAGONI, M., COIRO, P., DE ANGELIS, D., FUSCO, F.R., MORELLI, D., VENTURIERO, V., TROISI, E. and PRATESI, L., 2003. Functional Outcome of Ischemic and Hemorrhagic Stroke Patients after Inpatient Rehabilitation: a matched comparison. Stroke: Journal of the American Heart Association, 34(12), pp. 2861-2865.

PEOPLES, H., SATINK, T. and STEULTJENS, E., 2011. Stroke Survivors' Experiences of Rehabilitation: A Systematic Review of Qualitative Studies. Scand J Occup Ther, 18(3), pp. 163-171.

POLS, J., 2005. Enacting Appreciations: Beyond the Patient Perspective. Health Care Analysis, 13(3), pp. 203-221.

RUSSELL, S., SEELEY, J., EZATI, E., WAMAI, N., WERE, W. and BUNNELL, R., 2007. Coming Back From the Dead: Living with HIV as a Chronic Condition in Rural Africa. Health Policy and Planning, 22(5), pp. 344-347.

SEGROTT, J. and DOEL, M.A., 2004. Disturbing Geography: Obsessive‐Compulsive Disorder as Spatial Practice. Social & Cultural Geography, 5(4), pp. 597-614.

SHUTTLEWORTH, R., 2000. The Search for Sexual Intimacy for Men with Cerebral Palsy. Sexuality and Disability, 18(4), pp. 263-282.

SLADE, M., AMERING, M., FARKAS, M., HAMILTON, B., O'HAGAN, M., PANTHER, G., PERKINS, R., SHEPHERD, G., TSE, S. and WHITLEY, R., 2014. Uses and Abuses of Recovery: Implementing Recovery-Oriented Practices in Mental Health Systems. World Psychiatry, 13(1), pp. 12-20.

SMITH-MORRIS, C., 2010. The Chronicity of Life, the Acuteness of Diagnosis. In: MANDERSON, L. & SMITH-MORRIS, C., (eds.). Chronic Conditions, Fluid States: Chronicity and the Anthropology of Illness. pp. 21-37.

STYHRE, A., 2004. The (Re)embodied Organization: Four Perspectives on the Body in Organizations. Human Resource Development International, 7(1), pp. 101-116.

TEASELL, R., HUSSEIN, N. and FOLEY, N., 2013. Background Concepts in Stroke Rehabilitation. www.ebrsr.com (edn.) London, Ontario, Canada: Evidence-Based Review of Stroke Rehabilitation.

TEASELL, R., HUSSEIN, N. and FOLEY, N., 2013. Clinical Consequences of Stroke. www.ebrsr.com (edn.) Evidence-Based Review of Stroke Rehabilitation: Evidence-Based Review of Stroke Rehabilitation.

TEASELL, R., HUSSEIN, N. and FOLEY, N., 2013. Managing the Stroke Rehabilitation Triage Process. www.ebrsr.com (edn). London, Ontario, Canada: Evidence-Based Review of Stroke Rehabilitation.

TILLMANN-HEALY, L., 2003. Friendship as Method. Qualitative Inquiry, 9(5), pp. 729-749.

63

VAN DER SIJPT, E., 2014. Complexities and Contingencies Conceptualised: Towards a Model of Reproductive Navigation. Sociology of Health & Illness, 36(2), pp. 278-290.

VAN OORSCHOT, W., 2006. The Dutch Welfare State: Recent Trends and Challenges in Historical Perspective. European Journal of Social Security, 8(1), pp. 57-76.

VIGH, H., 2009. Motion Squared. A Second Look at the Concept of Social Navigation. ANTHROPOLOGICAL THEORY, 9(4), pp. 419-438.

VIGH, H., 2006. Navigating Terrains of War. Youth and Soldiering in Guinea-Bissau. New York: Berghahn.

VON PETER, S., 2013. ‘Chronic’ identities in mental illness. Anthropology & Medicine, 20(1), pp. 48-58.

WIEDMAN, D., 2010. Globalizing the Chronicities of Modernity: Diabetes and the Metabolic Syndrome. In: MANDERSON, LENORE & SMITH-MORRIS, CAROLYN, ed, Chronic Conditions, Fluid States: Chronicity and the Anthropology of Illness. pp. 38-53.

Websites

Academisch Medisch Centrum (2013). CVA-zorgketen in het AMC. Available at:

https://www.amc.nl/web/Zorg/Patient/Afspraak-op-de-polikliniek/Polikliniek-

Neurologie/Patienteninformatie/CVAzorgketen-in-het-AMC-1.htm. [25/04/2014].

Kennisnetwerk CVA NL (n.d.). Noord Holland. Available at:

http://www.kennisnetwerkcva.nl/noord-holland [25/04/2014].

Mezzo (n.d.) Mantelzorg. Available at: http://www.mezzo.nl/mantelzorg. [25/04/2014].

READE Revalidatie en Reumatologie (2014). Van mogelijkheden naar maximaal

resultaat. Available at: http://reade.nl/home. [28/05/2014].

The Health Systems and Policy Monitor (2014). Health Systems in Transition (HiT)

profile of Netherlands. Available at:

http://hspm.org/countries/netherlands25062012/livighit.aspx?Section=3.6%20P

ayment%20mechanisms&Type=Section [10/05/2014].

WebMD (2005-2014). Stroke Health Center. Available at:

http://www.webmd.com/stroke/default.htm [10/05/2014].

Zoorgkaart (2014). Zoek, vind & waardeer 127.985 zorgaanbieders. Available at:

http://www.zorgkaartnederland.nl/verpleeghuis-en-verzorgingshuis.

[25/04/2014].

64

APPENDIX

Appendix A

Chronicity of LTC reforms

As mentioned in the context chapter, the LTC policies are undergoing constant reforms.

Hence these policies not only impact upon the stroke survivors’ after-care experience,

such reforms, and policies in general, are also impacting on the long-term care

employment market, on the long-term care education system and on the home care

provision system.

Chronicity of Long-Term Care Work

The ZZP payment system provides an annual lump sum to institutions, and an

‘expenditure ceiling’ is set (NZa 2012: 23). This should urge nursing and elderly homes to

cut costs wherever possible, which is mainly done on two fronts: by a stricter intake, of

patients with indicated ZZP 4 and above, and by reducing care personnel whilst at the

same time increasing the remaining personnel’s working hours on the same salary band.

It has been reported that wages in the LTC are generally low, where care workers earn

just slightly more than low-skilled workers in general (OECD 2011: 169).

In both of my fieldwork sites those changes took hold, but it was in the nursing home

which saw the greatest impact. Not only did the reforms influence the quality of care, as

for instance in the afternoon shifts there were only two care professionals (one nurse and

one LTC worker) for 32 residents, the cuts were also partly responsible for higher rates

of mortality as one of the para-medical staff confirmed: ”It is terrible what happens here,

only two carers for the afternoon shift and only one during the night shift. No wonder that

bad things happen. People die here”. She referred to a Ghanaian resident who suffocated

on his vomitus the previous week. Sander, the team-manager of the second floor

confirmed that the under-staffing causes major problem as

…when 5 people ring the bell and only 1 comes through then the 2 [carers] will

be busy with that one person… at the end of the day you have like 4 or 5 more

persons who need to pee…. and that is the reality of the elderly healthcare…

65

An additional problem was that the average mean age of the care personnel was 45 – 50.

You have seen my staff. The average age is 54..it is like being a builder [working

on a construction site], and their bodies are racked after 30 years of lifting

people… they got lift up people who are heavy, they got to roll and bend them over

hundreds times.….I could use some young legs who are not tired after 4 hours of

running

This was also acknowledged in the OECD report (2011: 171) where care work can often

lead to early retirement due to stress and burnout. Furthermore, due to their demanding

and burdensome job, the carers in this nursing home were frequently on sick leave and

some even needed to discontinue their employment.

In this respect, LTC policies are the political facts of chronicity, as not only do they

affect the care provision in nursing homes with resulting increase of mortality rates, these

policies are also co-responsible for the chronicity of understaffing. And this, in turn, leads

to a chronic sick, and chronic frustrated care personnel. In a sense then, as much as

chronic conditions are perceived to be unending, recovery deemed to be unlikely and

hence not worth of investment (Ferzacca 2010: 158), so are (chronic) nursing institutions

and their care personnel regarded as not worth of (educational) investment.

CHRONICITY OF LOW-LEVEL EDUCATION

My informants frequently raised their concerns regarding the low-level qualifications of

care workers. It has been widely acknowledged that LTC workers hold low-level

qualifications as the standardisation of care worker qualifications is often lacking (OECD

2011: 163). In the Netherlands, between 17 and 60 per cent of the LTC employees do not

have relevant LTC-related qualification (ibid). Furthermore, elderly and long-term care,

especially in Amsterdam, is marked by migration flows mainly from Suriname or African

countries. Most of the migrants, especially the ones who migrated in the 70s and 80s

either did not obtain high quality nursing education, or they were ‘de-skilled’, e.g.

downgraded to a lower level (mostly to level 1-2) (da Roit 2010; OECD 2011: 175).

In the past care workers qualifications were sufficient for elderly and LTC. However,

as the population grows older and the medical conditions more complex (due to co-

morbidities), the call for better educated care workers was prevalent in both of my

66

fieldwork settings. Britt54 for instance reasoned that not only medical know-how should

be taught but also efficient case management.

[LTC workers] are trained in this particular field only; they poorly or don’t

perform a lot of the things which they have learnt a long time ago…This is why

they make mistakes. I mean it is a tricky business the elderly healthcare, and

the [educational] level [of the care workers] are the lowest of healthcare

compared to a hospital.

Although they receive in-house training, their second nature care practises are often hard

to change as Sander, the team manager of the nursing homes second floor confirmed

[T]here is more complicated care with more demanding inspections. So all adds

on…. [Care workers] want to keep some sort of tradition of things they are safe

with [e.g. care practices]. It is not possible to make changes all of the sudden

…..you got to provide them with time… I mean, yes there are loads of things going

wrong. So I can do two things [as a manager]: only bitch about everyone, or I

give them respect on how they go with me in this transformation. Point by point

we gonna make the changes towards a better care [with less staff].

Although Sander and his colleagues provide in-house training for care workers, his

reasoning points to a much wider problematic, namely, the lack of the LTC educational

standardisation. One of the effects of the long term policies is the prevalence of low-level

education, which in turn negatively impacts upon the care provision practices, not only in

care and nursing homes, but also on the home care provision55.

Chronicity of Homecare (reforms)

The Dutch home-care system is embedded in the LTC scheme, and home-care (HC) was

initially developed as a less costly substitute for residential care56 (Da Roit 2012). The

1990s and early 2000s saw an increase of HC due to the rise of the aging population, which

in turn contributed to an escalation of the HC systems expenditure (ibid: 230).

Henceforth, the call for cost-containment was voiced, which saw a transfer from AWBZ-

54 Britt works as a quality nurse in the rehabilitation institution. 55 Please refer to Appendix A for a detailed explanation of the formal home care setting. 56 The HC system was introduced in 1968 with the establishment of the AWBZ (da Roit 2012: 228).

67

financed home care to one which is financed by the municipalities 57 , under which

entitlement of specific types of care is not guaranteed (da Roit 2012: 234). Cost

containment was further achieved by way of introducing consumer-directed (or cash-for-

care) schemes, such as ‘Personal budget’ ((Persoonsgebonden budget (PGB)) and co-

payments. The former is based on a persons need for care and care is either purchased

from professional organisations or via live-in care modes (ibid: 233). The latter can be

regarded as an indirect way to restrict access to care services (ibid: 233). High-income

earners are to solve their care problems via the private care market. Low-income earners,

though still entitled to social assistance, are expected to be cared for within their informal

care network58 (ibid).

It is especially the latter development which was of major concern for my

professional informants, as to how to care for stroke survivors who are ‘in-between’59,

which is also acknowledged by the DHC Authority (NZa):

[T]here are possibilities for saving money via this outpatient health care [but]

there are also inherent risks [involved]. The plans are difficult to implement for

people with a more serious care requirement (ZZP 3-4)[…] A therapeutic social

climate and/or a safe or protected home environment may indeed be essential

for these clients in particular [and] additional measures are needed to safeguard

the quality of the health care for these clients (NZa 2012:13).

Hence, the DHCA acknowledges the chronicity of the reforms and the accompanying

structural factors, which also inform the establishment of ‘indicaties’. The eligibility for

formal, high quality HC provision is dependent on such assessments. Anneke, a nurse

working at the Stroke Advise Centre, reasoned that indications are easy to establish for

57 Shifting provisions from the AWBZ to the municipalities meant moving entitlements from a social insurance and individual rights-based scheme to a support system based on subsidiarity: within the municipalities, citizens themselves, independently or through their social networks, should arrange the support that they need (da Roit 2012: 234). 58Informal care in the Netherlands, in cooperates family members who provide 24/7 care, and the so-called ‘Mantelzorg’ tradition, where friends and family members are coming and going. Everyone does small tasks, and keep the sick person company. This informal Mantelzorg system is always connected with the formal homecare system (Mezzo n.d.). In order to compensate for the informal carers as annual allowance of €250,- can be claimed. 59In-between are those who are not well enough to be sufficiently independent (e.g. ZZP 1-4) and not ‘disabled’ enough (ZZP 4-5) to be admitted to nursing homes.

68

physical or psychological disabled people. For the ones with brain damage, however, it is

far more complex and difficult.

You have also classes but brain damage is not a class: neither physical nor

psychological disabled. But it’s more in the middle. That’s why it’s very, very

difficult to get good indication for people who have brain damage [such as

stroke survivors]. This is also the reason why some of the district nurses,

including the ones working for Cordaan, try to establish a system without

indications, as it costs a lot of afford and trial to get good indications. But now

the nurses already work without indications.

It can be argued, that the post-stroke body functions as the social navigator, as its post-

stroke disabilities specify the indications; which in turn determine the eligibility for

formal HC. It also can be argued that the district nurses employ resistance tactics (de

Certeau 1984) in order to bring about changes within the system.

Conclusion

The LTC reforms have wide reaching implications, not only for the stroke survivors, but

also for medical professionals, their employment situation and on the standardisation of

long-term care education. The reforms not only contributed to a chronic exhausted care

personnel in the nursing home, these reforms were also co-responsible for higher

mortality rates. The home care provision will be equally affected, as due to the new ZZP

assessment criteria’s, stroke survivor with severe disabilities and an indication of 4/5

have to be catered in the informal care setting. My professional informants’ voiced

concerns that these ‘in-between’ survivors, as well as their families, will suffer the most

from the policy changes. Hence the chronicity of the stroke illness experience is enhanced

by political and economic factors.

69

Appendix B

Demographics of Stroke Survivors

Name Age Country of origin

Onset of stroke (MM/YYYY)

Institution / Phase

Mr Olm 69 Netherlands 02/2014 Rehabilitation / Sub-Acute Maarten 71 Netherlands 02/2014 Rehabilitation / Sub-Acute Mr Suso 56 Gambia 1st: 07/2013

2nd: 03/2014 Rehabilitation / Sub-Acute

Dominik 54 Togo 08/2013 Chronic, but based in the rehabilitation establishment

Emiel 61 Netherlands 06/2011 Nursing Home / Chronic Mr Osei 58 Ghana 02/2008 Nursing Home / Chronic Mr Kaanu 63 Suriname 07/2013 Nursing Home / Chronic Thomas 54 Ghana 04/2004 Nursing Home / Chronic

Demographics of Professionals60

Name Position held Institution Sander Team Manager Nursing Home Anneke Nurse Stroke Advise Centre

Britt Quality Nurse Rehabilitation Institution

60 Although I conversed with many more professionals those mentioned are the ones who are directly

quoted.

70

Appendix C

The modern Rehabilitation Buildings

61

Versus

The 70s style nursing home

61 All pictures are the authors own.