Ageing together and the paradox of negotiating care transitions for informal disability carers in migrant multicultural communities

Abstract

This paper examines care transition planning and the experiences of ageing carers who provide care for family members with disability from culturally and racially marginalised migrant (CaRM) backgrounds in Western Sydney. The study was designed as collaborative qualitative research involving family-based in-depth interviews and a validation workshop with nine families with a total of 16 participants: parents (n = 9); adult family members with disability (n = 7). The findings in this paper report only on informal carers (n = 9) and show that ageing informal carers are anxious about the future, stemming from their self-awareness of ageing, ongoing health concerns, and frustration with service systems. Long-term care transition plans include seeking independence for the family member with a disability, continuing living together until the end of life, and relying on normative disability services. The paper argues that ageing informal carers from CaRM backgrounds providing disability care face a growing challenge in negotiating social and healthcare service barriers affecting how they plan for future care. Ongoing advocacy and awareness of disability issues in CaRM communities are essential for prioritising care transition planning, disability rights, and service navigation. Carer support organisations should empower aging carers to address inconsistencies in aged and disability care, considering cultural norms.