@article {Nap-van der Vlist463, author = {Merel M Nap-van der Vlist and Marijke C Kars and Emma E Berkelbach van der Sprenkel and Linde N Nijhof and Martha A Grootenhuis and Stefan M van Geelen and Cornelis K van der Ent and Joost F Swart and Annet van Royen-Kerkhof and Martine van Grotel and Elise M van de Putte and Sanne L Nijhof}, title = {Daily life participation in childhood chronic disease: a qualitative study}, volume = {105}, number = {5}, pages = {463--469}, year = {2020}, doi = {10.1136/archdischild-2019-318062}, publisher = {BMJ Publishing Group Ltd}, abstract = {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{\textquoteright}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{\textendash}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{\textquoteright}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.}, issn = {0003-9888}, URL = {https://adc.bmj.com/content/105/5/463}, eprint = {https://adc.bmj.com/content/105/5/463.full.pdf}, journal = {Archives of Disease in Childhood} }