NotesFAQContact Us
Collection
Advanced
Search Tips
Back to results
Peer reviewed Peer reviewed
Direct linkDirect link
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.
SAGE Publications. 2455 Teller Road, Thousand Oaks, CA 91320. Tel: 800-818-7243; Tel: 805-499-9774; Fax: 800-583-2665; e-mail: journals@sagepub.com; Web site: http://bibliotheek.ehb.be:2814
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