A CASS1, J DEVITT1, K ANDERSON1, J CUNNINGHAM1, P SNELLING3, C PREECE2
1Menzies School of Health Research, Charles Darwin University, Darwin, Northern Territory; 2Independent Indigenous Consultant, Cairns, Queensland; 3Royal Prince Alfred Hospital, Sydney, New South Wales
Aim: To explore Indigenous End Stage Kidney Disease (ESKD) patients’ views on transplantation as a treatment option.
Background: Indigenous Australians suffer a disproportionate burden of ESKD at an earlier age than non-Indigenous Australians. However, they are signiﬁcantly less likely to receive a transplant. This study reports a national
study of Indigenous ESKD patients’ views on transplantation.
Methods: The Improving Access to Kidney Transplants (IMPAKT) research program investigated barriers to kidney transplantation for Indigenous Australians. A large interview study elicited illness experience narratives from 146 patients, including views on transplant. Interviews were conducted at 26 urban, regional and remote sites that collectively treat the majority of Indigenous ESKD patients.
Results: Four inter-related themes were identiﬁed in patient commentary: a very high level (90% of respondents) of positive interest in transplantation; patients reported a range of communication difﬁculties and felt uninformed about transplant; family involvement in decision-making was similarly constrained by inadequate information; and patients identiﬁed a need to negotiate cultural and social sensitivities around transplantation.
Conclusion: Indigenous ESKD patients demonstrated an intense interest in transplantation. Patients believe transplant is the path most likely to support the re-establishment of their ‘normal’ family life. Most patients had only a rudimentary knowledge of the notion of transplant but no understanding of eligibility criteria, the transplant procedure and associated risks. Patients and their families experienced multiple communication barriers that – taken together – undermine their engagement in treatment decision-making. Although cultural sensitivities associated with transplantation were described, these did not constrain patients in making choices about their own health. Transplant units and local treatment providers should develop user-friendly, culturally informed and region-speciﬁc education programs regarding transplantation for Indigenous ESKD patients.