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Please Be Patient : A Cultural Phenomenological Study of Haemodialysis and Kidney Transplantation Care

Gunnarson, Martin LU (2016) 7.
Abstract (Swedish)
Popular Abstract in Swedish

Avhandlingen undersöker de två behandlingsalternativ, hemodialys och njurtransplantation, som är tillgängliga för personer med njursvikt. I fokus för undersökningen står de former av person- och patientskap som skapas och upprätthålls i hemodialys- och njurtransplantationsvården samt i de njursjukas vardagsliv. Ett av avhandlingens grundläggande antaganden är att dessa vårdformer och vardagsliv är djupt sammanflätade med de kulturella, historiska, ekonomiska och politiska kontexter inom vilka de försiggår.

Avhandlingen är skriven inom forskningsprojektet Kroppen som gåva, resurs och vara: organtransplantationer i Östersjöområdet, som involverade forskare från Södertörns högskola och... (More)
Popular Abstract in Swedish

Avhandlingen undersöker de två behandlingsalternativ, hemodialys och njurtransplantation, som är tillgängliga för personer med njursvikt. I fokus för undersökningen står de former av person- och patientskap som skapas och upprätthålls i hemodialys- och njurtransplantationsvården samt i de njursjukas vardagsliv. Ett av avhandlingens grundläggande antaganden är att dessa vårdformer och vardagsliv är djupt sammanflätade med de kulturella, historiska, ekonomiska och politiska kontexter inom vilka de försiggår.

Avhandlingen är skriven inom forskningsprojektet Kroppen som gåva, resurs och vara: organtransplantationer i Östersjöområdet, som involverade forskare från Södertörns högskola och Lunds universitet och finansierades av Östersjöstiftelsen. Den bygger på ett etnografiskt material bestående av observationer och djupintervjuer med patienter och vårdgivare på fyra hemodialysavdelningar: en i Riga, Lettland, och tre i Stockholm, Sverige. Det teoretiska och metodologiska angreppssättet är kulturanalytiskt och fenomenologiskt och utgår från en syn på kulturer som föränderliga och relationella och människan som förkroppsligad och djupt sammanflätad med den omgivande världen.

Till skillnad från tidigare humanistisk och samhällsvetenskaplig forskning på området tar avhandlingen ett brett grepp om de fenomen som studeras. Snarare än att endast rikta intresset mot den mest spektakulära av de två behandlingsalternativen, organtransplantation, studeras de njursjukas insjuknande och första möten med de två vårdformerna samt deras erfarenheter av att återvända till hemodialys efter att ha varit transplanterade.

Avhandlingen belyser på så sätt de normer och värderingar som de undersökta medicinska praktikerna är laddade med. Här blir det tydligt att det finns en utbredd syn på hemodialys som undermålig jämfört med transplantation, vilken tenderar att beskrivas som kapabel att, på ett rutinmässigt sätt, återställa de njursjukas hälsa och återföra dem till ett normalt liv. Patienternas berättelser visar dock att sjukdomen ständigt är närvarande även i livet som transplanterad, och att den utlovade normaliteten inte är ett självklart resultat av behandlingen.

Men även hemodialyspraktiken är laddad med inflytelserika normer och värderingar, ur vilka idéer om ett idealt patientskap framträder. Enligt detta på många sätt nyliberalt influerade ideal bör patienter vara autonoma, ansvarstagande, aktiva och kunniga i relation till sjukdomen och behandlingarna. Vårdgivarna bör se dem som experter på sina egna kroppar och som individer med specifika önskningar och behov. För de njursjuka är dessa ideal dock svåra leva upp till, inte minst till en början, när den förändrade kroppsligheten och vardagen är ny. Efter en tid tillägnar de sig dock förmågan att skapa en slags syntes mellan sin kropp som de upplever den och kroppen som den förstås och framställs inom medicinen, en syntes som gör det möjligt för dem att i viss utsträckning omorientera sig i tillvaron och uppleva en slags riktning. Att denna möjlighet uppstår beror till stor del på den tidsliga struktur som hemodialys ger livet. På grund av sin repetitiva natur blir behandlingen till slut i stor utsträckning rutinmässig och därför möjlig att göra till en del av den kroppslighet med vilken man bebor världen. Paradoxalt nog upplever många på samma gång denna tidsliga struktur som problematisk, som något som berövar dem kontrollen över deras liv.

Avhandlingen visar alltså att personer som insjuknar i allvarliga och kroniska sjukdomar endast successivt tillägnar sig förmågan att förstå och aktivt hantera det nya förkroppsligade sätt på vilket de bebor världen. Vårdpersonal bör därför inte från början se på och behandla patienterna som experter på sina kroppar, utan snarare ge dem den tid och stöd de behöver för att göra upprepade försök att skapa och upprätthålla ett liv med en sjuk kropp. (Less)
Abstract
This thesis examines the practice of haemodialysis and kidney transplantation, the two medical therapies available for persons with kidney failure, from a phenomenological perspective. A basic assumption made in the thesis is that contemporary biomedicine is deeply embedded in the cultural, historical, economic, and political circumstances provided by the particular local, national, and transnational contexts in which it is practiced. The aim of the thesis is twofold. On the one hand, the aim is to examine the forms of person- and patienthood enacted and negotiated in haemodialysis and kidney transplantation care and in the daily lives of persons with kidney failure. On the other hand, the aim is to investigate the ways in which the... (More)
This thesis examines the practice of haemodialysis and kidney transplantation, the two medical therapies available for persons with kidney failure, from a phenomenological perspective. A basic assumption made in the thesis is that contemporary biomedicine is deeply embedded in the cultural, historical, economic, and political circumstances provided by the particular local, national, and transnational contexts in which it is practiced. The aim of the thesis is twofold. On the one hand, the aim is to examine the forms of person- and patienthood enacted and negotiated in haemodialysis and kidney transplantation care and in the daily lives of persons with kidney failure. On the other hand, the aim is to investigate the ways in which the enacted and negotiated forms of person- and patienthood are culturally embedded and normatively charged.

In order to examine and investigate this twofold aim, an empirical material has been gathered that comprises observations and in-depth interviews with patients and caregivers at four haemodialysis units, one in Riga, Latvia, and three in Stockholm, Sweden. The theoretical approach and methodology of the study is cultural and phenomenological in character, drawing on an ethnological and anthropological understanding of culture as processual and relational, and on a phenomenological understanding of personhood as embodied and intertwined with the surrounding world.

The thesis shows that patients’ encounters and attempts to deal with the diagnoses and treatments associated with kidney failure are complex and often misalign them with the normatively charged orientations enacted and recommended by medicine. The complex situation that emerges when they undergo transplantation, for example, stands in stark contrast to the widespread official view of organ transplantation as a self-evidently health-bringing and normalising therapy.

Through their repeated and extensive experiences of undergoing haemodialysis and living with the disease, patients eventually become able to create a synthesis between their lived experiences of their own body and their body as a medical object – what in the thesis is called a ‘sick body’ – a synthesis that allows them to reorient themselves in life and experience a sense of direction. This process relies, to a large extent, on the temporal structure that haemodialysis affords life; it is by repeatedly undergoing the treatment that patients become able to create a sick body. Even so, many of them find this temporal structure problematic; they experience it as disruptive of their control and future-orientedness and as causing an existentially difficult-to-handle boredom.

The thesis also shows that the political developments and the norms prevalent in the two national contexts studied greatly affect the orientations of the treatment practices and the participants’ lives. In both Riga and Stockholm, ideals of freedom, activity, control, and self-actualisation influence what forms of patienthood and personhood are enacted.

The study indicates that persons who fall ill with a serious and chronic disease only gradually become able to understand and actively cope with their differently embodied circumstances of life. This suggests that medical professionals should not too hastily enlist their patients as experts on their own bodies, but rather provide them with the time and support necessary for making repeated attempts at creating and maintaining a life with a sick body. (Less)
Please use this url to cite or link to this publication:
author
supervisor
opponent
  • Professor Lindgaard Høyer, Klaus, Københavns Universitet
organization
publishing date
type
Thesis
publication status
published
subject
keywords
haemodialysis, kidney transplantation, kidney failure, patienthood, culture, phenomenology, embodiment, medical practice, neoliberalism
volume
7
pages
435 pages
publisher
Lund Studies in Arts and Cultural Sciences
defense location
Sal MB503, Södertörns högskola, Alfred Nobels allé 7, Huddinge
defense date
2016-01-29 13:00
external identifiers
  • scopus:84991094801
ISSN
2001-7529
ISBN
978-91-981458-3-0
language
English
LU publication?
yes
id
25b0e656-b605-425f-a5b6-d574ea3ec951 (old id 8410361)
date added to LUP
2015-12-17 17:18:08
date last changed
2017-04-02 03:15:18
@phdthesis{25b0e656-b605-425f-a5b6-d574ea3ec951,
  abstract     = {This thesis examines the practice of haemodialysis and kidney transplantation, the two medical therapies available for persons with kidney failure, from a phenomenological perspective. A basic assumption made in the thesis is that contemporary biomedicine is deeply embedded in the cultural, historical, economic, and political circumstances provided by the particular local, national, and transnational contexts in which it is practiced. The aim of the thesis is twofold. On the one hand, the aim is to examine the forms of person- and patienthood enacted and negotiated in haemodialysis and kidney transplantation care and in the daily lives of persons with kidney failure. On the other hand, the aim is to investigate the ways in which the enacted and negotiated forms of person- and patienthood are culturally embedded and normatively charged. <br/><br>
In order to examine and investigate this twofold aim, an empirical material has been gathered that comprises observations and in-depth interviews with patients and caregivers at four haemodialysis units, one in Riga, Latvia, and three in Stockholm, Sweden. The theoretical approach and methodology of the study is cultural and phenomenological in character, drawing on an ethnological and anthropological understanding of culture as processual and relational, and on a phenomenological understanding of personhood as embodied and intertwined with the surrounding world. <br/><br>
The thesis shows that patients’ encounters and attempts to deal with the diagnoses and treatments associated with kidney failure are complex and often misalign them with the normatively charged orientations enacted and recommended by medicine. The complex situation that emerges when they undergo transplantation, for example, stands in stark contrast to the widespread official view of organ transplantation as a self-evidently health-bringing and normalising therapy. <br/><br>
Through their repeated and extensive experiences of undergoing haemodialysis and living with the disease, patients eventually become able to create a synthesis between their lived experiences of their own body and their body as a medical object – what in the thesis is called a ‘sick body’ – a synthesis that allows them to reorient themselves in life and experience a sense of direction. This process relies, to a large extent, on the temporal structure that haemodialysis affords life; it is by repeatedly undergoing the treatment that patients become able to create a sick body. Even so, many of them find this temporal structure problematic; they experience it as disruptive of their control and future-orientedness and as causing an existentially difficult-to-handle boredom. <br/><br>
The thesis also shows that the political developments and the norms prevalent in the two national contexts studied greatly affect the orientations of the treatment practices and the participants’ lives. In both Riga and Stockholm, ideals of freedom, activity, control, and self-actualisation influence what forms of patienthood and personhood are enacted. <br/><br>
The study indicates that persons who fall ill with a serious and chronic disease only gradually become able to understand and actively cope with their differently embodied circumstances of life. This suggests that medical professionals should not too hastily enlist their patients as experts on their own bodies, but rather provide them with the time and support necessary for making repeated attempts at creating and maintaining a life with a sick body.},
  author       = {Gunnarson, Martin},
  isbn         = {978-91-981458-3-0},
  issn         = {2001-7529},
  keyword      = {haemodialysis,kidney transplantation,kidney failure,patienthood,culture,phenomenology,embodiment,medical practice,neoliberalism},
  language     = {eng},
  pages        = {435},
  publisher    = {Lund Studies in Arts and Cultural Sciences},
  school       = {Lund University},
  title        = {Please Be Patient : A Cultural Phenomenological Study of Haemodialysis and Kidney Transplantation Care},
  volume       = {7},
  year         = {2016},
}