The needs of family members of people with severe or profound intellectual disabilities when collaborating with healthcare professionals: a systematic review

IF 2.1 2区 医学 Q1 EDUCATION, SPECIAL Journal of Intellectual Disability Research Pub Date : 2024-11-21 DOI:10.1111/jir.13199
K. van Beurden, F. R. Vereijken, N. Frielink, P. J. C. M. Embregts
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Abstract

Background

Collaboration with healthcare professionals is crucial in arranging necessary lifelong support for people with intellectual disabilities. However, family members often face challenges when collaborating with healthcare professionals. Family members of people with severe and profound intellectual disabilities often encounter many professionals due to medical needs and the severity of their disability. Therefore, providing a comprehensive overview of existing literature on the needs and experiences of family members of relatives with severe or profound intellectual disabilities when collaborating with healthcare professionals is needed to provide insight into how to stimulate and support collaboration.

Method

The review was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement. Seven databases were systematically searched and a thematic analysis was conducted on 23 studies.

Results

Five overarching themes were identified: (1) need for a balanced view of their relative; (2) need for recognition and compassion; (3) healthcare professionals facilitating close and active involvement; (4) desired qualities of healthcare professionals and (5) conditions for successful interaction between family members and healthcare professionals.

Conclusions

The results indicated distinct needs that family members had for themselves and their relatives, as well as desired qualities (e.g. trustworthiness) and supporting factors (e.g. information). Furthermore, the review highlighted persisting needs, such as the need for information and empathy, as well as emerging needs, such as the desire to be recognised as experts and to develop personal bonds with healthcare professionals. These insights can inform future research by identifying areas that require deeper exploration.

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重度或极重度智障人士的家庭成员在与医护人员合作时的需求:系统性综述。
背景:在为智障人士安排必要的终身支持时,与医疗保健专业人员的合作至关重要。然而,家庭成员在与医护专业人员合作时往往面临挑战。由于医疗需求和残疾的严重程度,重度和极重度智障人士的家庭成员往往会遇到许多专业人员。因此,有必要对现有文献进行全面概述,了解重度或极重度智障亲属的家庭成员在与医护专业人员合作时的需求和经历,从而为如何促进和支持合作提供深入见解:综述按照系统综述和元分析首选报告项目 (PRISMA) 声明进行。对七个数据库进行了系统检索,并对 23 项研究进行了专题分析:结果:确定了五大主题:(1) 需要对其亲属有一个平衡的看法;(2) 需要认可和同情;(3) 医疗保健专业人员促进密切和积极的参与;(4) 医疗保健专业人员的理想素质;(5) 家庭成员和医疗保健专业人员之间成功互动的条件:研究结果表明了家庭成员对自身及其亲属的独特需求,以及所期望的品质(如值得信赖)和支持因素(如信息)。此外,综述还强调了一些持续存在的需求,如对信息和同理心的需求,以及一些新出现的需求,如被认可为专家的愿望和与医疗保健专业人员建立个人联系的愿望。这些见解可以为今后的研究提供参考,确定需要深入探讨的领域。
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来源期刊
CiteScore
5.60
自引率
5.60%
发文量
81
期刊介绍: The Journal of Intellectual Disability Research is devoted exclusively to the scientific study of intellectual disability and publishes papers reporting original observations in this field. The subject matter is broad and includes, but is not restricted to, findings from biological, educational, genetic, medical, psychiatric, psychological and sociological studies, and ethical, philosophical, and legal contributions that increase knowledge on the treatment and prevention of intellectual disability and of associated impairments and disabilities, and/or inform public policy and practice. Expert reviews on themes in which recent research has produced notable advances will be included. Such reviews will normally be by invitation.
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