Daily life participation in childhood chronic disease: a qualitative study.

Autor:	Nap-van der Vlist MM; Paediatrics, Wilhelmina Children's Hospital, University Medical Center Utrecht, Utrecht, The Netherlands m.m.vandervlist-3@umcutrecht.nl., Kars MC; Julius Center for Health Sciences and Primary Care, Utrecht, The Netherlands., Berkelbach van der Sprenkel EE; Paediatrics, Wilhelmina Children's Hospital, University Medical Center Utrecht, Utrecht, The Netherlands., Nijhof LN; Paediatrics, Wilhelmina Children's Hospital, University Medical Center Utrecht, Utrecht, The Netherlands., Grootenhuis MA; Psycho-oncology, Princess Máxima Center for Pediatric Oncology, Utrecht, The Netherlands., van Geelen SM; Education Centre, University Medical Center Utrecht, Utrecht, The Netherlands., van der Ent CK; Cystic Fibrosis Center and Department of Pediatric Respiratory Medicine, University Medical Center Utrecht, Utrecht, The Netherlands., Swart JF; Paediatric Rheumatology, Wilhelmina Children's Hospital, University Medical Center Utrecht, Utrecht, The Netherlands., van Royen-Kerkhof A; Paediatric Rheumatology, Wilhelmina Children's Hospital, University Medical Center Utrecht, Utrecht, The Netherlands., van Grotel M; Oncology, Princess Máxima Center for Pediatric Oncology, Utrecht, The Netherlands., van de Putte EM; Paediatrics, Wilhelmina Children's Hospital, University Medical Center Utrecht, Utrecht, The Netherlands., Nijhof SL; Paediatrics, Wilhelmina Children's Hospital, University Medical Center Utrecht, Utrecht, The Netherlands.
Jazyk:	angličtina
Zdroj:	Archives of disease in childhood [Arch Dis Child] 2020 May; Vol. 105 (5), pp. 463-469. Date of Electronic Publication: 2019 Nov 20.
DOI:	10.1136/archdischild-2019-318062
Abstrakt:	Objective: Opportunities to participate in daily life have improved considerably for children with chronic disease. Nevertheless, they still face challenges associated with their ever-present illness affecting every aspect of their lives. To best help these children, we aimed to assess the child's own perspective on participation and the main considerations that affect participation in a stable phase of disease. Methods: Qualitative study design was applied. Semistructured, indepth interviews were conducted and analysed by a general inductive approach using constant comparison, coding and categorisation. Children 8-18 years old with a chronic disease were recruited from a cohort study involving cystic fibrosis, autoimmune disease and post-treatment paediatric cancer. Results: 31 of the 56 (55%) invited patients participated. From the perspective of children with chronic disease, participation is considered more than merely engaging in activities; rather, they view having a sense of belonging, the ability to affect social interactions and the capacity to keep up with peers as key elements of full participation. Some children typically placed a higher priority on participation, whereas other children typically placed a higher priority on their current and/or future needs, both weighing the costs and benefits of their choices and using disclosure as a strategy. Conclusions: Enabling full participation from the child's perspective will help realise patient-centred care, ultimately helping children self-manage their participation. Caregivers can stimulate this participation by evaluating with children how to achieve a sense of belonging, active involvement and a role within a peer group. This requires active collaboration between children, healthcare providers and caregivers. Competing Interests: Competing interests: None declared. (© Author(s) (or their employer(s)) 2020. No commercial re-use. See rights and permissions. Published by BMJ.)
Databáze:	MEDLINE
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