PERSPECTIVES OF SOCIAL HEALTH AND CONNECTIONS AMONG ARAB AUSTRALIANS RECEIVING KIDNEY REPLACEMENT THERAPY: AN INTERVIEW STUDY
Nibras Jasim1,2, Amanda Sluiter2,3, Mary Ann Nicdao2,3,4, Chandana Guha2,3, Dr Nicole Scholes-Robertson2,3, Prof Germaine Wong2,3,4, Prof Allison Jaure2,3, Dr Karine Manera2,3
1Research and Education Network, Western Sydney Local Health District, Westmead, Australia, 2Sydney School of Public Health, The University of Sydney, Sydney, Australia, 3Centre for Kidney Research, The Children’s Hospital at Westmead, Westmead, Australia, 4Department of Renal Medicine, Westmead Hospital, Western Sydney Local Health District, Westmead, Australia
Aim: To describe the experiences and perspectives on social health and connections among Arab Australian patients with chronic kidney disease (CKD) receiving kidney replacement therapy.
Background: Patients with CKD receiving kidney replacement therapy face major constraints in life and social participation, and are at risk of having poor social connections. This is an even greater challenge for people from minority or disadvantaged groups, including culturally and linguistically diverse (CALD) populations, who face multiple social disadvantages.
Methods: Thematic analysis of semi-structured interviews with Arab Australians receiving kidney replacement therapy across three renal units within the Western Renal Service, Australia. This cultural group was purposively sampled as it represents the dominant non-English cultural and language group in Western Sydney.
Results: Twenty-five participants were interviewed, including 13 (52%) male and 22 (88%) born overseas. Thirteen interviews were conducted in Arabic language and 12 in English.
Five major themes were identified: Treatment impeding social participation (losing time with loved ones, incapacitated by symptoms, frustration in being confined at home, fear of infection); Depleting community and cultural ties (disconnected from family overseas, community stigma of CKD, diet restrictions impacting connection to food); Struggling with loss of identity within family (inability to fulfil gender roles, hiding burden from children); Intentional isolation (avoiding interaction with patients in crisis, finding solace in solitude); and Deriving comfort from connection (protective and supportive community, bonding through shared cultural experiences, using social media to maintain connections).
Conclusions: Social connections were substantially impaired due to CKD. This will inform the development of interventions tailored to address social health among Arab Australians with CKD. Further research identifying the experiences and preferences among other CALD groups is needed.
Biography:
Dr Karine Manera is an NHMRC Emerging Leader Research Fellow and co-lead of the Social Health and Wellbeing (SHAW) group at the Sydney School of Public Health. She has expertise in person-centred care and outcomes, and is passionate about improving the well-being and social health of people with chronic kidney disease. She is currently leading a program of work which partners with consumers to assess and address loneliness and social isolation in CKD.