普拉德-威利综合征患者的兄弟姐妹的经历和支持需求——来自两阶段定性研究的结果。

IF 1.9 3区医学 Q2 PSYCHOLOGY, EDUCATIONAL

Journal of Applied Research in Intellectual Disabilities Pub Date : 2025-09-23 DOI:10.1111/jar.70122

Meghana Wadnerkar Kamble, Jen Dawe, Karen Bunning

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引用次数: 0

摘要

背景：在普瑞德-威利综合征研究中，探索兄弟姐妹视角的证据有限。目的：探讨Prader-Willi综合征患者的兄弟姐妹的经历和支持需求。方法：这项两阶段定性研究涉及11岁以上的兄弟姐妹（n = 11）和父母（n = 8）。第一阶段使用了多个年龄特定的焦点小组和配对访谈。数据分析采用综合话语和主题分析。第二阶段包括使用名义小组技术的协商一致会议。结果：在第一阶段出现了五个主要主题：家庭和关系、饮食习惯、共同理解、调整和倡导以及支持需求。研究结果揭示了兄弟姐妹话语中的一些共性，尽管他们的经历因年龄而异。家长们意识到了这些差异，但关注点有所不同。结论和启示：兄弟姐妹的经历显示了一个发展轨迹，可以解释父母不同的观点。以生命和家庭为中心的观点可以帮助定制支持系统。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

Experiences and Support Needs of Siblings of Individuals With Prader-Willi Syndrome- Findings From a Two-Stage Qualitative Study

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Experiences and Support Needs of Siblings of Individuals With Prader-Willi Syndrome- Findings From a Two-Stage Qualitative Study

Background

There is limited evidence exploring sibling's perspective in Prader-Willi syndrome research.

Objectives

To investigate the experiences and support needs of the siblings of individuals with Prader-Willi syndrome.

Methods

This two-stage qualitative study involved siblings aged 11 years onwards (n = 11) and parents (n = 8). Stage 1 utilised multiple age-specific focus groups and paired interviews. Data were analysed through integrated discourse and thematic analysis. Stage 2 included consensus meetings utilising the Nominal Group Technique.

Results

Five major themes emerged during Stage 1: family and relationships, food practices, shared understanding, adjustment and advocacy, and support needs. The findings revealed some commonalities in the siblings' discourse, although their experiences varied based on their age. Parents were aware of these differences but had a different focus.

Conclusions and Implications

Sibling's experiences show a developmental trajectory and could explain variable parental perspectives. A lifespan and family-focused view could help tailor support systems.

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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.