Hearing siblings’ voices: exploring the (online) support needs of siblings of children with a chronic condition

Journal of patient-reported outcomes(2019)

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摘要
Background Siblings of children and adolescents with a chronic condition are at risk for developing psychosocial problems. It is important, that they receive appropriate support according to their needs. A sibling-specific module of an existing online intervention ( Op Koers Online) for adolescents with a chronic condition might be an appropriate way to offer psychosocial support to siblings. The aim of the current study is to identify siblings’ online support needs in order to develop a sibling-specific module of the existing Op Koers Online intervention. Results A total of 91 siblings (mean age 15.2 years, Standard Deviation 2.7) of children with a chronic condition completed an online questionnaire; nine semi-structured interviews were held additionally. Of all participants, 55% would like to initiate or increase contact with other siblings of children with a chronic condition and 46% of those were interested in an online chat course. The themes for online support considered most important were impact on daily life, worrying about brother’s/sister’s future, handling other people’s reactions, and how attention is divided within the family . Conclusions Siblings are interested in peer contact and online support. Op Koers Online for siblings seems to be a suitable intervention to offer online psychosocial support. The next step is to develop a sibling specific module of the Op Koers Online course, taking into account the identified themes.
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关键词
Chronic condition,E-health,Online support needs,Participation,Siblings
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