TY - JOUR T1 - Daily life participation in childhood chronic disease: a qualitative study on the child’s and parent’s perspective JF - BMJ Paediatrics Open JO - BMJ Paediatrics Open DO - 10.1136/bmjpo-2021-001057 VL - 5 IS - 1 SP - e001057 AU - Merel M Nap-van der Vlist AU - Emma E Berkelbach van der Sprenkel AU - Linde N Nijhof AU - Martha A Grootenhuis AU - Cornelis K van der Ent AU - Joost F Swart AU - Annet van Royen-Kerkhof AU - Martine van Grotel AU - Elise M van de Putte AU - Sanne L Nijhof AU - Marijke C Kars Y1 - 2021/05/01 UR - http://bmjpaedsopen.bmj.com/content/5/1/e001057.abstract N2 - Objective To understand how a child with a stable chronic disease and his/her parents shape his/her daily life participation, we assessed: (1) the parents’ goals regarding the child’s daily life participation, (2) parental strategies regarding the child’s participation and () how children and their parents interrelate when their goals regarding participation are not aligned.Methods This was a qualitative study design using a general inductive approach. Families of children 8–19 years with a stable chronic disease (cystic fibrosis, autoimmune disease or postcancer treatment) were recruited from the PROactive study. Simultaneous in-depth interviews were conducted separately with the child and parent(s). Analyses included constant comparison, coding and categorisation.Results Thirty-one of the 57 invited families (54%) participated. We found that parents predominantly focus on securing their child’s well-being, using participation as a means to achieve well-being. Moreover, parents used different strategies to either support participation consistent with the child’s healthy peers or support participation with a focus on physical well-being. The degree of friction between parents and their child was based on the level of agreement on who takes the lead regarding the child’s participation.Conclusions Interestingly, parents described participation as primarily a means to achieve the child’s well-being, whereas children described participation as more of a goal in itself. Understanding the child’s and parent’s perspective can help children, parents and healthcare professionals start a dialogue on participation and establish mutual goals. This may help parents and children find ways to interrelate while allowing the child to develop his/her autonomy.Data are available on reasonable request. Authors can be contacted for data requests. Data are available on reasonable request. ER -