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Study Protocol--Improving Access to Kidney Transplants (IMPAKT): a detailed account of a qualitative study investigating barriers to transplant for Australian Indigenous people with end-stage kidney disease.

Devitt J, Cass A, Cunningham J, Preece C, Anderson K, Snelling P - BMC Health Serv Res (2008)

Bottom Line: The national scope, inter-disciplinary approach and use of qualitative methods in an investigation of a significant health inequality affecting Indigenous people is, we believe, an Australian first.Additionally, the data includes extensive parallel commentary from a cohort of specialists, nurses and other staff.The IMPAKT Interview study protocol may contribute to improvements in multi-disciplinary, flexible design health services research with hard to reach or vulnerable populations in Australia and elsewhere.

View Article: PubMed Central - HTML - PubMed

Affiliation: The George Institute for International Health, PO Box M201, Missenden Road Sydney, NSW, 2050 Australia. jeannie.devitt@menzies.edu.au

ABSTRACT

Background: Indigenous Australians are slightly more than 2% of the total Australian population however, in recent years they have comprised between 6 and 10% of new patients beginning treatment for end-stage kidney disease (ESKD). Although transplant is considered the optimal form of treatment for many ESKD patients there is a pronounced disparity between the rates at which Indigenous ESKD patients receive transplants compared with their non-Indigenous counterparts. The IMPAKT (Improving Access to Kidney Transplants) Interview study investigated reasons for this disparity through a large scale, in-depth interview study involving patients, nephrologists and key decision-making staff at selected Australian transplant and dialysis sites.

Methods: The design and conduct of the study reflected the multi-disciplinary membership of the core IMPAKT team. Promoting a participatory ethos, IMPAKT established partnerships with a network of hospital transplant units and hospital dialysis treatment centres that provide treatment to the vast majority of Indigenous patients across Australia. Under their auspices, the IMPAKT team conducted in-depth interviews in 26 treatment/service centres located in metropolitan, regional and remote Australia. Peer interviewing supported the engagement of Indigenous patients (146), and nephrologists (19). In total IMPAKT spoke with Indigenous and non-Indigenous patients (241), key renal nursing and other (non-specialist) staff (95) and a small number of relevant others (28). Data analysis was supported by QSR software. At each site, IMPAKT also documented educational programs and resources, mapped an hypothetical 'patient journey' to transplant through the local system and observed patient care and treatment routines.

Discussion: The national scope, inter-disciplinary approach and use of qualitative methods in an investigation of a significant health inequality affecting Indigenous people is, we believe, an Australian first. An exceptionally large cohort of Indigenous participants provided evaluative comment on their health services in relation to dialysis and transplant. Additionally, the data includes extensive parallel commentary from a cohort of specialists, nurses and other staff. The study considers a 'patient journey' to transplant within a diverse range of Australian treatment centre/workplace settings. The IMPAKT Interview study protocol may contribute to improvements in multi-disciplinary, flexible design health services research with hard to reach or vulnerable populations in Australia and elsewhere.

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IMPAKT interview sites.
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Figure 2: IMPAKT interview sites.

Mentions: The remainder of this paper is a detailed account of the methods used. In brief, we sought to answer the questions by interviewing key stakeholder groups at selected treatment sites (i.e. transplant and dialysis sites). The stakeholder groups comprised, on the one hand, patients – particularly Indigenous patients – and, on the other, staff with roles or tasks related to each of the identified five steps, including nephrologists, transplant coordinators, patient educators and so on. In total, we interviewed 355 patients and staff (Table 1) and 28 other relevant people (carers, family members and so on) at locations across Australia (Figure 2). At each site, IMPAKT carried out three additional exercises: first, documenting educational programs and resources; second, facilitating an interactive activity mapping a hypothetical 'patient journey' from diagnosis to transplant through that local system; and third, observing interactions, patient care, and treatment routines during field visits to service centres. Although referred to as the 'Interview' Study, this additional qualitative research component [35] including observation; interview recording and transcription; and analysis of texts and documents.


Study Protocol--Improving Access to Kidney Transplants (IMPAKT): a detailed account of a qualitative study investigating barriers to transplant for Australian Indigenous people with end-stage kidney disease.

Devitt J, Cass A, Cunningham J, Preece C, Anderson K, Snelling P - BMC Health Serv Res (2008)

IMPAKT interview sites.
© Copyright Policy - open-access
Related In: Results  -  Collection

License
Show All Figures
getmorefigures.php?uid=PMC2275237&req=5

Figure 2: IMPAKT interview sites.
Mentions: The remainder of this paper is a detailed account of the methods used. In brief, we sought to answer the questions by interviewing key stakeholder groups at selected treatment sites (i.e. transplant and dialysis sites). The stakeholder groups comprised, on the one hand, patients – particularly Indigenous patients – and, on the other, staff with roles or tasks related to each of the identified five steps, including nephrologists, transplant coordinators, patient educators and so on. In total, we interviewed 355 patients and staff (Table 1) and 28 other relevant people (carers, family members and so on) at locations across Australia (Figure 2). At each site, IMPAKT carried out three additional exercises: first, documenting educational programs and resources; second, facilitating an interactive activity mapping a hypothetical 'patient journey' from diagnosis to transplant through that local system; and third, observing interactions, patient care, and treatment routines during field visits to service centres. Although referred to as the 'Interview' Study, this additional qualitative research component [35] including observation; interview recording and transcription; and analysis of texts and documents.

Bottom Line: The national scope, inter-disciplinary approach and use of qualitative methods in an investigation of a significant health inequality affecting Indigenous people is, we believe, an Australian first.Additionally, the data includes extensive parallel commentary from a cohort of specialists, nurses and other staff.The IMPAKT Interview study protocol may contribute to improvements in multi-disciplinary, flexible design health services research with hard to reach or vulnerable populations in Australia and elsewhere.

View Article: PubMed Central - HTML - PubMed

Affiliation: The George Institute for International Health, PO Box M201, Missenden Road Sydney, NSW, 2050 Australia. jeannie.devitt@menzies.edu.au

ABSTRACT

Background: Indigenous Australians are slightly more than 2% of the total Australian population however, in recent years they have comprised between 6 and 10% of new patients beginning treatment for end-stage kidney disease (ESKD). Although transplant is considered the optimal form of treatment for many ESKD patients there is a pronounced disparity between the rates at which Indigenous ESKD patients receive transplants compared with their non-Indigenous counterparts. The IMPAKT (Improving Access to Kidney Transplants) Interview study investigated reasons for this disparity through a large scale, in-depth interview study involving patients, nephrologists and key decision-making staff at selected Australian transplant and dialysis sites.

Methods: The design and conduct of the study reflected the multi-disciplinary membership of the core IMPAKT team. Promoting a participatory ethos, IMPAKT established partnerships with a network of hospital transplant units and hospital dialysis treatment centres that provide treatment to the vast majority of Indigenous patients across Australia. Under their auspices, the IMPAKT team conducted in-depth interviews in 26 treatment/service centres located in metropolitan, regional and remote Australia. Peer interviewing supported the engagement of Indigenous patients (146), and nephrologists (19). In total IMPAKT spoke with Indigenous and non-Indigenous patients (241), key renal nursing and other (non-specialist) staff (95) and a small number of relevant others (28). Data analysis was supported by QSR software. At each site, IMPAKT also documented educational programs and resources, mapped an hypothetical 'patient journey' to transplant through the local system and observed patient care and treatment routines.

Discussion: The national scope, inter-disciplinary approach and use of qualitative methods in an investigation of a significant health inequality affecting Indigenous people is, we believe, an Australian first. An exceptionally large cohort of Indigenous participants provided evaluative comment on their health services in relation to dialysis and transplant. Additionally, the data includes extensive parallel commentary from a cohort of specialists, nurses and other staff. The study considers a 'patient journey' to transplant within a diverse range of Australian treatment centre/workplace settings. The IMPAKT Interview study protocol may contribute to improvements in multi-disciplinary, flexible design health services research with hard to reach or vulnerable populations in Australia and elsewhere.

Show MeSH
Related in: MedlinePlus