Kamble Meghana Wadnerkar, Dawe Jen, Bunning Karen
School of Health Sciences, Faculty of Medicine and Health, University of East Anglia, Norwich Research Park, Norwich, UK.
J Appl Res Intellect Disabil. 2025 Sep;38(5):e70122. doi: 10.1111/jar.70122.
There is limited evidence exploring sibling's perspective in Prader-Willi syndrome research.
To investigate the experiences and support needs of the siblings of individuals with Prader-Willi syndrome.
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.
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.
Sibling's experiences show a developmental trajectory and could explain variable parental perspectives. A lifespan and family-focused view could help tailor support systems.
在普拉德-威利综合征研究中，探索兄弟姐妹观点的证据有限。
调查普拉德-威利综合征患者兄弟姐妹的经历和支持需求。
这项两阶段的定性研究涉及11岁及以上的兄弟姐妹（n = 11）和父母（n = 8）。第一阶段采用了多个针对不同年龄段的焦点小组和配对访谈。通过综合话语和主题分析对数据进行了分析。第二阶段包括使用名义群体技术的共识会议。
在第一阶段出现了五个主要主题：家庭与关系、饮食习俗、共同理解、适应与倡导以及支持需求。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。父母意识到了这些差异，但关注点不同。
兄弟姐妹的经历呈现出一种发展轨迹，这可以解释父母观点的差异。以生命周期和家庭为重点的观点有助于定制支持系统。
