C
HRONICITY OF
S
TROKE
S
URVIVORS
R
ECOVERY OF
L
IFE
MS
CM
EDICALA
NTHROPOLOGY ANDS
OCIOLOGY Author: Michaela HubmannStudent Number: 10601295 Supervisor: Dr Kristine Krause 2nd Reader: Dr Anja Hiddinga
A
BSTRACTFor 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.
T
ABLE OFC
ONTENTSAbstract ... 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
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 3
A
CKNOWLEDGEMENTThis 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
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HAPTER1:
I
NTRODUCTIONThis thesis contributes to the understanding on 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 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
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.
5
survivors? Throughout this thesis it becomes clear that this 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, post-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’ 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 on the theoretical building blocks which informed this research throughout: 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.
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.
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HAPTER2:
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ONTEXTIn 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 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
M
EDICALD
EFINITIONS ANDT
REATMENTO
PTIONSA 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
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.
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(Paolucci 2003: 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
P
RINCIPLES ANDE
FFICACY OFS
TROKER
EHABILITATIONStudies 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 programmes9, 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.
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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
C
RITIQUE ON THE CURRENTR
EHABILITATIONA
PPROACHAs 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 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 ZZPs10) 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
A
CUTEL
ANDSCAPEAs 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 Chains12 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
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).
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condition, a stroke survivor might stay in the hospital for one week up to six months. Since time matters, physical distance to such specialised hospitals might affect the rural population’s acute stroke care.
2.5
S
UB-A
CUTE ORR
EHABILITATIONL
ANDSCAPEIn 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
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.
13
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 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
C
HRONICL
ANDSCAPE17When 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
L
ONG-T
ERMC
ARE(LTC)
IN CONTEXTThe 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
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).
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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 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
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).
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).
23The 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.
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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 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
S
UMMARYThe 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
27Whether someone is institutionalised or well enough to be cared for at home.
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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 LTC, as their qualifications are not standardised, and their wages are the lowest in the LTC 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.
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HAPTER3:
T
HEORETICALF
RAMEWORKIn 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
C
HRONICITY OFL
IFEWith the increased academic attention towards chronic conditions28 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
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.
18
investigating 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 heteregenous 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
F
LUIDC
ONCEPTS OFA
CUTE ANDC
HRONIC:
T
HED
ICHOTOMYSince 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
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.
19
initial onset to a life marked by co-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
A
NTHROPOLOGICALC
RITIQUE ONC
HRONICITYAs 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 disorders32 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).
20
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
(C
OUNTER)
C
ONCEPT OFR
ECOVERYFor 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
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
way through the stroke care landscape and resisted the institutionalised care provision strategies.
3.5
T
ACTICS,
S
TRATEGIES ANDS
OCIALN
AVIGATIONIn 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.
23
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, which Vigh34 (2009) calls social navigation.
3.5.1SOCIAL 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, for 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.
24
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
S
UMMARYI 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.
C
HAPTER4:
M
ETHODOLOGYThis 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 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
M
ETHODS,
D
ATAA
NALYSIS,
E
THICALC
ONSIDERATIONS ANDL
IMITATIONS 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 them 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 the informant 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 doctors and therapists. At these occasions I was able to observe the interaction between35Cordaan is a health and elderly care organisation, which has rehabilitation centres, nursing and elderly
homes spread throughout Amsterdam.
36For further demographic information please refer to Appendix B.
26
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 that 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, 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’: AB
ACK ANDF
ORTHJ
OURNEYAs 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
I
SSUES WITHG
ENDEREDE
NCOUNTERS ANDL
ONELINESSCharmaz (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
37Effective days to conduct fieldwork in the first month were from Monday to Wednesday.
28
out for walks or to 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
S
UMMARYThe 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.
29
C
HAPTER5:
C
HRONICITY OF THEB
UILT ANDM
ATERIALE
NVIRONMENTThis 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
L
OCATION ANDA
RCHITECTUREBoth 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
39 Please refer to Appendix C for pictures.
30
