The Views of People With Intellectual Disabilities About What Contributes Towards Optimal End-of-Life Care: A Qualitative Evidence Synthesis

IF 2.1 3区医学 Q2 PSYCHOLOGY, EDUCATIONAL

Journal of Applied Research in Intellectual Disabilities Pub Date : 2025-06-11 DOI:10.1111/jar.70067

Corrina Alex Bebbington, Elizabeth Croot

{"title":"The Views of People With Intellectual Disabilities About What Contributes Towards Optimal End-of-Life Care: A Qualitative Evidence Synthesis","authors":"Corrina Alex Bebbington, Elizabeth Croot","doi":"10.1111/jar.70067","DOIUrl":null,"url":null,"abstract":"<div>\n \n \n <section>\n \n <h3> Background</h3>\n \n <p>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.</p>\n </section>\n \n <section>\n \n <h3> Methodology</h3>\n \n <p>Data from 93 participants in five qualitative studies were thematically synthesised to identify optimal care and inform recommendations.</p>\n </section>\n \n <section>\n \n <h3> Results</h3>\n \n <p>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.</p>\n </section>\n \n <section>\n \n <h3> Conclusion</h3>\n \n <p>Optimal end-of-life care is person-centred, holistic, uses ‘active’ communication, meets ethical obligations and involves the necessary people in care.</p>\n </section>\n </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 3","pages":""},"PeriodicalIF":2.1000,"publicationDate":"2025-06-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.70067","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of Applied Research in Intellectual Disabilities","FirstCategoryId":"3","ListUrlMain":"https://onlinelibrary.wiley.com/doi/10.1111/jar.70067","RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"PSYCHOLOGY, EDUCATIONAL","Score":null,"Total":0}

引用次数: 0

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.

查看原文本刊更多论文

智障人士对最佳临终关怀的看法：一项定性证据综合

智力残疾人士在获得临终关怀方面面临不平等，在质量和提供方面也面临不平等。本综述旨在综合定性证据，以了解他们自己对最佳临终关怀的看法。从五项定性研究中93名参与者的数据进行主题综合，以确定最佳护理并提供建议。结果产生了四个总体和相互关联的分析主题。(1)最佳护理承认异质性，并以人为本。它与个人的愿望和偏好保持一致，这些愿望和偏好是通过“积极”的沟通建立起来的。(2)这样可以识别个人的整体支持需求。(3)它履行了关于自主、公平和个人“知情权”的道德义务。它包括必要的人员，以确保满足所有需求。结论：最佳的临终关怀是以人为本的，整体性的，使用“积极”的沟通，符合道德义务，并使必要的人参与护理。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

求助全文

约1分钟内获得全文求助全文

来源期刊

Journal of Applied Research in Intellectual Disabilities Multiple-

CiteScore

4.70

自引率

12.50%

发文量

期刊介绍： JARID is an international, peer-reviewed journal which draws together findings derived from original applied research in intellectual disabilities. The journal is an important forum for the dissemination of ideas to promote valued lifestyles for people with intellectual disabilities. It reports on research from the UK and overseas by authors from all relevant professional disciplines. It is aimed at an international, multi-disciplinary readership. Topics covered include community living, quality of life, challenging behaviour, communication, sexuality, medication, ageing, supported employment, family issues, mental health, physical health, autism, economic issues, social networks, staff stress, staff training, epidemiology and service provision.