Creating Person-Centred Support for People with Intellectual Disabilities at the End of Life: An Australian Qualitative Study of Unmet Needs and Strategies

Autor/inn/en	McNamara, Beverley; Same, Anne; Rosenwax, Lorna
Titel	Creating Person-Centred Support for People with Intellectual Disabilities at the End of Life: An Australian Qualitative Study of Unmet Needs and Strategies
Quelle	In: Journal of Intellectual Disabilities, 24 (2020) 4, S.543-558 (16 Seiten) PDF als Volltext Verfügbarkeit
Zusatzinformation	ORCID (McNamara, Beverley)
Sprache	englisch
Dokumenttyp	gedruckt; online; Zeitschriftenaufsatz
ISSN	1744-6295
DOI	10.1177/1744629518823887
Schlagwörter	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; Australia + Suchen Sie Ihr Suchwort? Ausland; Intellect; Disability; Disabilities; Verstand; Behinderung; Selbstbestimmung; Eigeninitiative; Risikogruppe; Sterbefall; Tod; Todesfall; Decision-making; Entscheidungsfindung; Analogiemodell; Lebensqualität; Personality characteristic; Personality traits; Persönlichkeitsmerkmal; Sozialanwaltschaft; Australien
Abstract	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. (As Provided).
Anmerkungen	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://sagepub.com
Erfasst von	ERIC (Education Resources Information Center), Washington, DC
Update	2024/1/01