They really want to go back home, they hate it here: The importance of place in Canadian health professionals’ views on the barriers facing Aboriginal patients accessing kidney transplants

They really want to go back home, they hate it here: The importance of place in Canadian health professionals’ views on the barriers facing Aboriginal patients accessing kidney transplants

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  Short Report They really want to go back home, they hate it here : The importance of place inCanadian health professionals’ views on the barriers facing Absrcinalpatients accessing kidney transplants Kate Anderson a,  , Karen Yeates b , Joan Cunningham c,d , Jeannie Devitt e , Alan Cass a a The George Institute for International Health and the University of Sydney, PO Box M201, Missenden Road, Camperdown, NSW 2096, Australia b Queens University, Kingston, ON, Canada c Menzies School of Health Research and Institute of Advanced Studies, Charles Darwin University, NT, Australia d University of Sydney, NSW, Australia e The George Institute for International Health, NT, Australia a r t i c l e i n f o  Article history: Received 29 November 2007Received in revised form3 March 2008Accepted 10 March 2008 Keywords: Kidney transplantationIndigenous healthHealth inequalitiesAccess to healthcare a b s t r a c t Aboriginal Canadian patients with end-stage kidney disease receive disproportionately fewertransplants than non-Absrcinal patients. The reasons for this are poorly understood and likely to becomplex. This qualitative study employed thematic analysis of in-depth interviews with Canadiankidney health professionals ( n ¼ 23) from programs across Canada to explore their perspective on thisdisparity.Individual-level factors were the most commonly reported barriers to Absrcinal patients accessingtransplants — most notable of which was patients’ remote living location. Understanding the role of ‘place’ as a barrier to accessing care and the lived experiences of Absrcinal patients emerged as keyresearch priorities. &  2008 Elsevier Ltd. All rights reserved. Introduction End-stage kidney disease (ESKD) is a preventable chronicdisease that disproportionately affects Absrcinal populations inmany countries (Bramley et al., 2004). Kidney transplantation isconsidered to be the optimal treatment for  most   patients withESKD; compared with long-term dialysis, it confers a betterquality of life (Evans et al., 1985), a longer life expectancy (Wolfe et al.,1999) and lower costs (Cass et al., 2006). Despite the higher incidence of ESKD among Absrcinal Canadians, there is growingevidence that Absrcinal Canadian patients receive transplants atsubstantially lower rates than other patient groups (Tonelli et al.,2004; Yeates et al., 2004). Receiving a kidney transplant is a complex and often lengthyprocess. Patients must: be deemed medically suitable for, andinterested in, a transplant; be referred to a programme; receivetransplant education; complete the pre-transplant work-up;become wait-listed; and, finally, receive a donor kidney. Thebarriers to patients progressing through any or all of these stagesare likely to be complex and multifaceted (Alexander and Sehgal,1998), which might explain why the low rates of transplantamong Absrcinal patients have not yet been clearly explained.A recent study conducted in the Canadian province of Albertafound that while Aboriginal patients were equally likely to bereferred for transplant assessment, they spent longer in the work-up process and were approximately half as likely as other patientsto be wait-listed for transplant (Tonelli et al., 2005). The factorsunderlying these low rates of wait-listing and work-up completionremain unclear. In order to effectively address this disparity forAbsrcinal patients, it is first essential to identify and investigatethe barriers facing this patient group accessing transplants.We aimed to explore the views of Canadian kidney healthprofessionals on the barriers facing Absrcinal ESKD patientsaccessing kidney transplants, as a critical first step. We acknowl-edge that the views of health care providers do not account for thelived experience of patients. However, these health care providersdevelop their understanding of barriers through providing carefor many patients and, crucially, are key decision makers withregard to kidney transplantation. This study draws on materialfrom in-depth interviews with health professionals from kidneytransplant programs across Canada. Of particular interest inthis analysis were the perceived reasons for the low rates of  ARTICLE IN PRESS Contents lists available at ScienceDirectjournal homepage: Health & Place 1353-8292/$-see front matter  &  2008 Elsevier Ltd. All rights reserved.doi:10.1016/j.healthplace.2008.03.002  Corresponding author at: Royal Prince Alfied Hospital, The George Institute forInternational Health, Level 10, King George V Building, Missenden Road, Camper-down, NSW 2050, Australia. Tel.: +61299934500; fax: +61299934502. E-mail address: (K. Anderson).Health & Place 15 (2009) 390–393  wait-listing, work-up completion and kidney transplantationamong Absrcinal Canadians on dialysis. Methods Design Semi-structured, in-depth interviews were conducted with23 health professionals from six Canadian provinces in 2006(Table 1). The topics covered in the interviews were: treatmentchoices; patient suitability for transplant; barriers to transplant;‘compliance’; living kidney donation; information and commu-nication; and system and context. This paper focuses on athematic analysis of the sections of these interviews whereinterviewees reflected on the barriers to patients accessingtransplantation. Participants and setting  The seven transplant programs included were specificallyselected to maximise the geographic area and proportion of Aboriginal patients serviced by participating interviewees. TheDirector of each transplant programme was contacted by a teaminvestigator (KY, KA) and invited to participate in the study. AllDirectors agreed to participate and facilitate contact withindividuals holding particular roles within their programs.These individuals were then invited via email to participate inthe study. The health professionals were purposively sampled toinclude the views of key decision makers within each transplantprogramme, including senior transplanting nephrologists andprogramme directors ( n ¼ 8), transplant managers and coordina-tors ( n ¼ 5), clinical nurse specialists and patient educators( n ¼ 8) and Absrcinal renal nurses ( n ¼ 2). Data collection and analysis The majority of interviews were conducted individuallyand in-person; two were conducted via telephone. All interviews wereconducted by one team investigator (KA), were digitally recordedand transcribed for analysis. Participant demographics werecollected via self-report.The data were analysed through thematic analysis of thetranscribed interviews using QSR NVivo 7 (Doncaster, Australia).The coding and thematic analysis of the interview data wasundertaken by one team investigator (KA), with review and inputfrom all other investigators at regular consensus meetings. Ethical approval This study received ethics approval from the Queens UniversityResearch Ethics Board. Results Our analysis of the views of a selection of key Canadian kidneyhealth professionals revealed several factors identified as keybarriers to patients accessing transplantation across the country.Interestingly, the barriers identified as facing  all  patients werepredominantly system-level factors, whereas those identified asspecifically facing  Absrcinal  patients were chiefly individual-levelfactors. The most frequently and/or emphatically mentioned of these individual-level barriers was Aboriginal patients’ remoteliving location. Cultural and communication differences, per-ceived motivation and comorbidities were also mentioned. Individual versus systemic barriers When asked to identify the barriers facing  all  patientsreceiving a kidney transplant, respondents focused predominantlyon broader system-level barriers, with the shortage of availableorgans and long waiting times mentioned most frequently. Thecomplexity of the health and transplant systems and matchingcriteria used in Canadian organ allocation algorithms were alsocommonly spoken about. This commentary from a TransplantCoordinator highlights the issue of system complexity as a barrierto accessing transplants:The system is so large and cumbersome and the lack of aninformation system is the huge thing y we may not necessarilyknow the patient in the dialysis unit has had a heartattack y and then we find that out and the transplant workup stops. Then it’s up to somebody to restart the work up whenthe patient is suitable and there are so many areas where itcould fall down. [CIMP13]The issue of inadequate resourcing — in terms of time, person-nel, finance and education materials — was mentioned by severalrespondents as an obstacle to effective transplant assessment,education and wait-listing processes. The scope of this problem isillustrated in these comments from a Clinical Nurse Leader:There’s a huge backlog — with 700 patients on our referral or atsome stage on the list. We have probably over 300 patientsthat have never been assessed. We have the potential to assessonly three patients a week with the team that we have.[CIMP04]While system-level factors were most commonly identified asbarriers facing all patients, when asked about the barriers facingAbsrcinal patients specifically, respondents focused primarily onindividual-level factors. Most notable of these factors were:patients’ living in remote locations, perceived lack of motivation,high rates of co-morbid illness, language differences and culturalfactors. The cultural factors outlined by the respondents includedtransplantation not being seen as accepted by older Absrcinalpeople and Aboriginal patients not self-advocating or activelyseeking information. As one Transplant Programme Managerarticulated:Transplant in the Absrcinal population is not nearly the sameas it is in other populations, in the Caucasian populationanyway, it is just not as accepted and I think that is one of thehuge barriers. [CIMP08] Remote living location as a key barrier to transplantation The difficulty associated with care provision to Aboriginalpatients living in remote parts of Canada was the most commonly ARTICLE IN PRESS  Table 1 Providence of interviewees ( n ¼ 23)Province IntervieweesAlberta 6British Columbia 3Manitoba 3Ontario 5Quebec 3Saskatchewan 3Total 23 K. Anderson et al. / Health & Place 15 (2009) 390–393  391  identified barrier facing this patient group. As a TransplantProgramme Manager explained:In this province, because the majority of the Aboriginalpopulation do live in rural and remote communities — that’sone huge issue. So even if they are on dialysis, they may betreated away from here and they might never be referred here.But it is just the lack of follow through. Because quite honestly,it is the remoteness that keeps them off (the list). [CIMP08]The difficulties identified by respondents as relating to remoteliving location can be separated into two groups. First, were thechallenges faced by health professionals in providing adequatecare, education and information to remote patients. Second, werethe logistical and social problems faced by patients and theirfamilies in relocating from remote communities to town fortreatment or work-up. One Nurse Clinician touched on thedifficulties facing both staff and patients in the followingcomments about working up an Absrcinal patient for transplant:Today he may miss (an appointment). So this one will have tobe rescheduled and I cannot keep him here for two weeks.Sometimes if something happens, they make the decision thatthey don’t want to stay another four days in (city name)because they really want to go back home, they hate it here.For them it is a big sacrifice. [CIMP19]Another respondent, a Director of Nephrology, further elabo-rated on these difficulties:I think the problem is the degree of complexity of those tests;at least some of them mandate that they have to be donehere y and therefore if you lived far away, that would meantaking a dayoff work, travelling, getting someone to come withyou if you’re not well enough, organising your dialysis herebecause you may have to stay overnight. And so I think itwould be a challenge. Absolutely. [CIMP07] Compounding of system- and individual-level barriers for Absrcinal patients The compounding of the reported system- and individual-levelbarriers facing Absrcinal patients was explicitly referred to byonly a handful of respondents. The combination of the inadequateresourcing of the health care system and the remote livinglocation of many Aboriginal patients was the primary focusamong respondents for how these levels of barriers can interact toparticularly disadvantage this patient population. As one Directorof Dialysis iterated with clear frustration:We are unusually overwhelmed in our unit down here. Forsomeone to come down (to town for work-up), it means wehave to dialyse them. And so we don’t have room, we don’thave room! And so sometimes it just gets delayed terribly longand it’s inexcusable. But it happens. [CIMP20]Low socio-economic status and mobility of the CanadianAbsrcinal population were also mentioned as exacerbating thechallenges associated with remote living location. The resultinglogistical difficulties of providing care and getting Aboriginalpatients through the transplant work-up list were commonlycitedand are encapsulated in the following comments of a TransplantCoordinator:A lot of our (Absrcinal) patients are very transient; they movearound and y you make appointments and their work up isn’tcomplete because they’ve moved. The appointment hasn’t gotto them because they’ve told the dialysis unit but they haven’ttold us that they’ve moved. Or they haven’t told anybody. Youknow, they don’t have a phone, don’t have access to a phone,lower income and being in a remote community. [CIMP18] Discussion The picture that emerged through analysis of these interviewswith key Canadian transplant professionals was of a formidablecombination of system- and individual-level issues being stackedagainst Aboriginal patients reducing their ability to accesstransplant and dialysis. The reported challenges facing providersand patients in overcoming the accumulation of barriers — includ-ing system complexity, remote living location, low-socioeconomicstatus and language and cultural difference — demand urgentconsideration.It is notable that the factor most commonly identified as aspecific barrier to Absrcinal patients receiving a transplant wasliving in a remote location. While a recent Canadian study found noeffect of distance between patients’ residence location at dialysiscommencement and the nearest transplant centre on likelihood of receiving a transplant (Tonelli et al., 2006), our findings suggestthat the barriers posed by remote living location relate more topatients’ dislocation from specialist services for work-up anddialysis services, than to distance from the transplant centre. Thisis supported by the low rates of wait-listing and work-upcompletion among Aboriginal Canadian patients (Tonelli et al.,2005). In addition, because dialysis commonly necessitatesAbsrcinal patients to relocate to urban areas, often without theirfamilies,place of residenceoncedialysis treatmenthas commenceddoes not fullycapture the difficulties of isolationand engaging withthe system faced by Absrcinal patients from remote communities(Yeates, 2006). Moreover, proximity to a treatment or transplantcentre is a crude gauge of remoteness and dislocation. The barriersto providing effective and appropriate care to Absrcinal patientsfrom remote communities are likely to be complex and might notcorrelate directly with the kilometres they live from a treatment ortransplant centre.The need to shift the conceptualisation of ‘place’ in healthresearch from purely geographic terms to a more sophisticatedrelational approach is perhaps the key to better understandingthis apparently critical barrier (Cummins et al., 2007). The viewsexpressed by the key transplant professionals in this studysuggest that acknowledging not only the physical remoteness of this patient population, but also their disconnectedness fromsystems of health care, transport, family and community supportand communication is likely to capture more effectively thereasons for their lower rates of transplant.Also notable was the focus by the health professionalsinterviewed on the issues of language differences and culturalfactors. This propensity to locate the problem with the patientrather than in the interaction with the system or the system itself might de-emphasise modifiable factors that may be hinderingAboriginal patients from engaging in their treatment — such astime constraints, a lack of interpreters, or lack of appropriateeducational resources (Anderson, 1997). While acknowledgingand dealing appropriately with cultural difference is an essentialcomponent of effective health care provision, the dangers of systemicallystigmatising patients from minoritygroups must alsobe monitored and managed (Lowe et al., 1995; Anderson, 1997). This study was designed to investigate the views of caregiversand key decision-makers about the barriers facing AboriginalCanadian patients with ESKD accessing kidney transplants. Thefindings provide a valuable perspective on care provision forAbsrcinal patients and point to the need for a more in-depthexamination of the impact of ‘place’ on access to care. It must alsobe noted that this analysis deals with only one perspective — that ARTICLE IN PRESS K. Anderson et al. / Health & Place 15 (2009) 390–393 392  of the health care providers. Garnering an understanding of theviews and the lived experience of Absrcinal patients is a criticalnext step in exploring how these issues impact on patients’ abilityto engage with the health care system and receive appropriateandeffective care.  Acknowledgements This study was undertaken as part of the CAN-IMPAAKT Study,funded by a Research Award from the Department of Medicine atQueens University. Kate Anderson is supported by an AustralianPostgraduate Award, the Tempe Mann Prize from The AustralianFederation of University Women, and an ACSANZ Post GraduateTravel Award. Karen Yeates is supported by a biomedical Scholar-ship from the Kidney Foundation of Canada. Alan Cass issupported by a Jacquot Research Establishment Award from theRoyal Australasian College of Physicians and a NHMRC SeniorResearch Fellowship #457101. Joan Cunningham is supported byan NHMRC Career Development Award #283310. References Alexander, G.C., Sehgal, A.R., 1998. Barriers to cadaveric renal transplantationamong blacks, women, and the poor. The Journal of the American MedicalAssociation 280, 1148–1152.Anderson, I., 1997. The ethics of the allocation of health resources. In: Cowlishaw,G., Morris, B. (Eds.), Race Matters: Indigenous Australians and ‘Our’ Society.Absrcinal Studies Press, Canberra.Bramley, D., Hebert, P., Jackson, R., Chassin, M., 2004. Indigenous disparitiesin disease-specific mortality, a cross-country comparison: New Zealand,Australia, Canada, and the United States. New Zealand Medical Journal 117,U1215.Cass, A., Chadban, S., Craig, J., Howard, H., Mcdonald, S., Salkeld, G., White, S., 2006.The Economic Impact of End-Stage Kidney Disease in Australia.Kidney HealthAustralia, Melbourne.Cummins, S., Curtis, S., Diez-Roux, A.V., Macintyre, S., 2007. Understanding andrepresenting ‘place’ in health research: a relational approach. Social Science &Medicine 65, 1825–1838.Evans, R.W., Manninen, D.L., Garrison, L.P.J., Hart, L.G., Blagg, C.R., Butman, R.A.,Hull, A.R., Lowriw, E.G., 1985. The quality of life of patients with end-stagerenal disease. New England Journal of Medicine 312, 1537–1544.Lowe, M., Kerridge, I.H., Mitchell, K.R., 1995. ‘These sorts of people don’t do verywell’: race and allocation of health care resources. Journal of Medical Ethics 21,356–360.Tonelli, M., Hemmelgarn, B., Manns, B., Pylypchuk, G., Bohm, C., Yeates, K.,Gourishankar, S., Gill, J.S., 2004. Death and renal transplantation amongAbsrcinal people undergoing dialysis. Canadian Medical Association Journal171, 577–582.Tonelli, M., Chou, S., Gourishankar, S., Jhangri, G.S., Bradley, J., Hemmelgarn, B.,2005. Wait-listing for kidney transplantation among Absrcinal hemodialysispatients. American Journal of Kidney Disease 46, 1117–1123.Tonelli, M., Hemmelgarn, B., Kim, A.K., Bertazzon, S., Klarenbach, S., Manns, B.,Wiebe, N., Culleton, B., Gill, J.S., 2006. Association between residence locationand likelihood of kidney transplantation in Absrcinal patients treated withdialysis in Canada. Kidney International 70, 924–930.Wolfe, R.A., Ashby, V.B., Milford, E.L., Ojo, A.O., Ettenger, R.E., Agodoa, L.Y., Held, P.J.,Port, F.K.,1999. Comparison of mortality in all patients on dialysis, patients ondialysis awaiting transplantation, and recipients of a first cadaveric transplant.New England Journal of Medicine 341, 1725–1730.Yeates, K.E., 2006. Absrcinal patients on the road to kidney transplantation: isresidence location a barrier? Kidney International 70, 826–828.Yeates, K., Schaubel, D.E., Cass, A., Sequist, T.D., Ayanian, J.Z., 2004. Access to renaltransplantation for minority patients with ESRD in Canada. American Journalof Kidney Diseases 44, 1083–1089. ARTICLE IN PRESS K. Anderson et al. / Health & Place 15 (2009) 390–393  393
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