Incorporating indigenous knowledge in health services: a consumer partnership framework

My experiences with kidney care: A qualitative study of adults in the Northern Territory of Australia living with chronic kidney disease, dialysis and transplantation

“…In this study, we have also observed the association between clients’ confidence in their healthcare providers’ clinical and cultural competence and their satisfaction with care within the renal service. Clients also valued bi-directional feedback with health caring teams (cached in processes which supported care continuity) [17]. Lack of continuity in care was highlighted, and impacted on progressing and navigating care plans, and has been documented in other health conditions [20, 22].…”

“…We also note resources are needed (including shared consultation spaces) for health care providers and users to enhance patient-level care decision making [32]. A shared space which allowed recognition and synthesis of these priorities was built within our study governance structure [17], and enabled identification of priorities which sit within and outside of the remit of the health service (health care provider professionalism versus urban and remote accommodation and housing policy). Currently, our national renal registry, ANZDATA, examines patient-level health outcomes, but lacks mechanisms to record and signpost health system policy shifts, individual health service capability, resourcing and workplace culture which may explain patient patient-level health outcomes or experiences.…”

“…We acknowledge that clients utilising hospital-based dialysis were likely exposed to heightened impact of limited dialysis service capacity [10], and thus our report may underestimate their feedback on care continuity, service quality and transport support. To minimise bias, we established a patient reference group, advertised by expression of interest, which informed and supported a culturally safe engagement model [17], and which was guided by a respected and trusted senior renal client advocate (BB). The interview guide was piloted and then facilitated by researchers independent of the renal service with expertise in this context.…”

“…The synthesis and co-interpretation of patient experience was developed in four focus group meetings with Indigenous dialysis clients, in a non-clinical urban setting between April 2017 and November 2017. The development of the focus groups has been described elsewhere [17]. Participants of these recurring focus group meetings provided written consent for each focus group to be audio recorded and externally transcribed to further inform findings from this study.…”

“…The study was approved by the Department of Health and Menzies School of Health Research Human Research Ethics Committee (HREC 2016–2721). Feedback from early consultation for the study approach recommended establishing an Indigenous Reference Group to guide the data collection, analysis and dissemination phases [17]. Knowledge translation activities included updating service providers and health service clients of the progress of the research through departmental meetings and newsletters.…”