ERIC Number: EJ1270665
Record Type: Journal
Publication Date: 2020-Dec
Pages: 16
Abstractor: As Provided
ISBN: N/A
ISSN: ISSN-1744-6295
EISSN: N/A
Creating Person-Centred Support for People with Intellectual Disabilities at the End of Life: An Australian Qualitative Study of Unmet Needs and Strategies
McNamara, Beverley; Same, Anne; Rosenwax, Lorna
Journal of Intellectual Disabilities, v24 n4 p543-558 Dec 2020
Background: 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.
Descriptors: Foreign Countries, Intellectual Disability, Self Determination, Individual Power, At Risk Persons, Individual Needs, Death, Access to Health Care, Decision Making, Models, Cooperative Planning, Quality of Life, Allied Health Personnel, Health Needs, Individual Characteristics, Advocacy, Teamwork
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Publication Type: Journal Articles; Reports - Research
Education Level: N/A
Audience: N/A
Language: English
Sponsor: N/A
Authoring Institution: N/A
Identifiers - Location: Australia
Grant or Contract Numbers: N/A