The Views of People With Intellectual Disabilities About What Contributes Towards Optimal End‐of‐Life Care: A Qualitative Evidence Synthesis.
Saved in:
| Title: | The Views of People With Intellectual Disabilities About What Contributes Towards Optimal End‐of‐Life Care: A Qualitative Evidence Synthesis. |
|---|---|
| Authors: | Bebbington, Corrina Alex (AUTHOR), Croot, Elizabeth (AUTHOR) |
| Source: | Journal of Applied Research in Intellectual Disabilities. May2025, Vol. 38 Issue 3, p1-15. 15p. |
| Subjects: | Medical information storage & retrieval systems, Qualitative research, Interprofessional relations, Palliative treatment, CINAHL database, Holistic nursing, Descriptive statistics, Intellectual disabilities, Patient-centered care, Thematic analysis, Systematic reviews, MEDLINE, Spirituality, Terminal care, Data analysis software, Social support, People with disabilities, Advance directives (Medical care), Psychology information storage & retrieval systems |
| Abstract: | Background: People with intellectual disabilities face inequities in access to end‐of‐life care and inequalities in its quality and delivery. This review aimed to synthesise qualitative evidence to understand their own perspectives about what contributes to optimal end‐of‐life care. Methodology: Data from 93 participants in five qualitative studies were thematically synthesised to identify optimal care and inform recommendations. Results: Four overarching and interrelated analytical themes were generated. (1) Optimal care recognises heterogeneity and is person‐centred. It aligns with individuals' wishes and preferences which are established through 'active' communication. (2) This enables an individual's holistic support needs to be identified. (3) It fulfils ethical obligations around autonomy, equity and a person's 'right to know'. (4) It involves the necessary people to ensure all needs are met. Conclusion: Optimal end‐of‐life care is person‐centred, holistic, uses 'active' communication, meets ethical obligations and involves the necessary people in care. [ABSTRACT FROM AUTHOR] |
| Copyright of Journal of Applied Research in Intellectual Disabilities is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.) | |
| Database: | Psychology and Behavioral Sciences Collection |
|
Full text is not displayed to guests.
Login for full access.
|
|
| Abstract: | Background: People with intellectual disabilities face inequities in access to end‐of‐life care and inequalities in its quality and delivery. This review aimed to synthesise qualitative evidence to understand their own perspectives about what contributes to optimal end‐of‐life care. Methodology: Data from 93 participants in five qualitative studies were thematically synthesised to identify optimal care and inform recommendations. Results: Four overarching and interrelated analytical themes were generated. (1) Optimal care recognises heterogeneity and is person‐centred. It aligns with individuals' wishes and preferences which are established through 'active' communication. (2) This enables an individual's holistic support needs to be identified. (3) It fulfils ethical obligations around autonomy, equity and a person's 'right to know'. (4) It involves the necessary people to ensure all needs are met. Conclusion: Optimal end‐of‐life care is person‐centred, holistic, uses 'active' communication, meets ethical obligations and involves the necessary people in care. [ABSTRACT FROM AUTHOR] |
|---|---|
| ISSN: | 13602322 |
| DOI: | 10.1111/jar.70067 |
