作者
Lucy Coombes, Debbie Braybrook, Anna Roach, Hannah Scott, Daney Harðardóttir, Katherine Bristowe, Clare Ellis-Smith, Myra Bluebond-Langner, Lorna K Fraser, Julia Downing, Bobbie Farsides, Fliss EM Murtagh, Richard Harding, C-POS
发表日期
2022/10
期刊
European journal of pediatrics
卷号
181
期号
10
页码范围
3739-3752
出版商
Springer Berlin Heidelberg
简介
This study aims to identify the symptoms, concerns, and care priorities of children with life-limiting conditions and their families. A semi-structured qualitative interview study was conducted, seeking perspectives from multiple stakeholders on symptoms, other concerns, and care priorities of children and young people with life limiting and life-threatening conditions and their families. Participants were recruited from six hospitals and three children’s hospices in the UK. Verbatim transcripts were analysed using framework analysis. A total of 106 participants were recruited: 26 children (5–17 years), 40 parents (of children 0–17 years), 13 siblings (5–17 years), 15 health and social care professionals, 12 commissioners. Participants described many inter-related symptoms, concerns, and care priorities impacting on all aspects of life. Burdensome symptoms included pain and seizures. Participants spoke of the emotional …
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