Creating person-centred support for people with intellectual disabilities at the end of life: An Australian qualitative study of unmet needs and strategies. (December 2020)

• Record Type: Journal Article
• Authors: McNamara, Beverley; Same, Anne; Rosenwax, Lorna
• Is Part Of: Journal of intellectual disabilities. Volume 24:Number 4(2020)
• Page Start: 543
• Page End: 558
• Publication Date: 2020-12
• Subjects: intellectual disability -- end of life -- palliative care -- unmet needs -- person-centred; Mental retardation -- Periodicals; People with mental disabilities -- Periodicals; Learning disabilities -- Periodicals; Handicap intellectuel; Trouble d'apprentissage; Handicapé mental; Périodique électronique (Descripteur de forme); Ressource Internet (Descripteur de forme); 362.1968588
• DOI: 10.1177/1744629518823887
• Languages: English
• ISSNs: 1744-6295

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.