D MUSCAT1, R KANAGARATNAM1, H SHEPHERD1, K SUD2-4, K MCCAFFERY1, A WEBSTER1,4
1University of Sydney, School of Public Health, New South Wales, Australia; 2University of Sydney, Sydney Medical School, New South Wales, Australia; 3Nepean Hospital, Department of Renal Medicine, New South Wales, Australia; 4Westmead Hospital, Centre for Transplant and Renal Research, New South Wales, Australia
Background: Patients from culturally and linguistically diverse (CALD) backgrounds experience higher prevalence of chronic kidney disease (CKD) with a more rapid progression to dialysis. However, they are less likely to engage in decision-making about their health, with few interventions to support them to do so.
Aims: To explore the experience of decision-making throughout the CKD trajectory among CALD patients with Stage 5 CKD who are currently receiving haemodialysis, with a focus on core value influences on medical decision-making processes.
Methods: Semi-structured interviews were conducted with CALD patients at haemodialysis units in Western Sydney, Australia. Purposive sampling was used to target Arabic-speakers and English-speakers from the Indian subcontinent and Pacific Islands. Interviews were audio-recorded, transcribed, and analysed using Framework Analysis.
Results: Interviews were conducted with 26 participants (74% participation) between January and April, 2017. Many participants indicated that they wanted to be informed about their health and participate in decision-making. However they felt constrained by perceptions of power imbalance in the physician-patient dyad and experienced difficulty understanding a set of questions to support shared decision-making (SDM). Participants reported using more passive decision-making styles and feeling disconnected with the decision-making process “we weren’t given a choice…” [NIHU01].
Family and religion emerged as central to participants’ cultural identity and influenced their perceptions of health and decision-making. Participants reinforced community interdependence citing religious institutions as a support network and faith as a source of strength during illness.
Conclusions: Interview findings demonstrate the need for targeted and tailored SDM interventions that simultaneously acknowledge and address culturally-specific barriers and promote patient participation in line with patient preferences.