Creating person-centred support for people with intellectual disabilities at the end of life: An Australian qualitative study of unmet needs and strategies
Restricted accessResearch articleFirst published online December, 2020
Creating person-centred support for people with intellectual disabilities at the end of life: An Australian qualitative study of unmet needs and strategies
People with intellectual disabilities at the end of life are at risk of receiving inadequate and inequitable end-of-life care. This study explores their unmet needs, opportunities for person-centred care and experiences of health service use.
Methods:
Qualitative interviews with 26 experienced health professionals and carers were used to explore their patients’ and residents’ unmet needs and end-of-life care options and to outline strategies to support them.
Results:
A range of challenges and unmet needs experienced by people with intellectual disabilities are presented in themes: (1) accommodation setting at the end of life: dying ‘at home’; (2) personal factors and networks: a circle of support; (3) end-of-life medical care and decision-making. Strategies to facilitate good end-of-life care and a model of care are presented.
Conclusions:
Well-prepared and collaborative disability and health service workforces are needed, together with flexible and adequate end-of-life funding to ensure compassionate and person-centred care.
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