Ashok, Nivedita;
Hughes, Daniel;
Yardley, Sarah;
(2023)
Challenges and opportunities for improvement when people with an intellectual disability or serious mental illness also need palliative care: A qualitative meta-ethnography.
Palliative Medicine
10.1177/02692163231175928.
(In press).
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Abstract
BACKGROUND: People with diagnoses of intellectual disability or serious mental illness have higher mortality rates due to physical comorbidities; better understanding is needed to guide best practice in provision of palliative care for these populations. AIMS: To identify multivoiced perspectives, drawn from lived experience of: what works, and what does not, in palliative care for people with intellectual disability or serious mental illness; challenges in, and opportunities to improve, palliative care. DESIGN: A systematically constructed qualitative meta-ethnography. Protocol published (PROSPERO: CRD42021236616). DATA SOURCES: MEDLINE, PsychINFO, CINAHL PLUS and Embase used without date limitations. Papers published in English, containing qualitative data on palliative care provision for people with a diagnosis of intellectual disability or serious mental illness were included. Global five-point strength score applied for relevance/quality appraisal. RESULTS: Familiarity (of location, people and/or things) is important for good palliative care. Assumptions and misunderstandings about the role of mental capacity assessment to appropriately involve the patient in decision-making are common. Adapting training for palliative care staff to address concerns and beliefs about mental illness is one of the methods that helps avoid diagnostic overshadowing. Proactive identification of service arrangements to meet needs of persons with personality, psychotic, delusional and bipolar affective disorders will help optimise care. CONCLUSIONS: Evidence, including the voices of people with intellectual disability or serious mental illness is urgently needed to guide efforts to improve their access to and experience of palliative care. More evidence is especially needed to understand, develop and implement best practice for people with psychosis, bipolar affective disorder, mania and personality disorder.
| Type: | Article |
|---|---|
| Title: | Challenges and opportunities for improvement when people with an intellectual disability or serious mental illness also need palliative care: A qualitative meta-ethnography |
| Location: | England |
| Open access status: | An open access version is available from UCL Discovery |
| DOI: | 10.1177/02692163231175928 |
| Publisher version: | https://doi.org/10.1177/02692163231175928 |
| Language: | English |
| Additional information: | This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (https://creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (https://us.sagepub.com/en-us/nam/open-access-at-sage). Request permissions for this article. |
| Keywords: | Review, intellectual disability, mental disorders, meta-ethnography, palliative care, severe |
| UCL classification: | UCL UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Division of Psychiatry UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Division of Psychiatry > Marie Curie Palliative Care |
| URI: | https://discovery.ucl.ac.uk/id/eprint/10172005 |
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