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.
- chronic disease
- qualitative research
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Contributors SLN and MCK designed the study and were involved in the entire process from initial coding towards the final results, and reviewed and revised the manuscript. MMN-vdV designed the study, collected the data, was involved in the entire process from initial coding towards the final results, and drafted and revised the manuscript. EEBvdS collected the data, was involved in the entire process from initial coding towards the final results, and reviewed and revised the manuscript. LNN designed the study and collected the data, acted as peer reviewer by checking the findings against transcripts and as such validated the results, and reviewed and revised the manuscript. MAG, EMvdP and SMvG acted as peer reviewer by checking the findings against transcripts and as such validated the results, and reviewed and revised the manuscript. MvG, JFS, AvR-K and CKvdE critically reviewed the data analyses and reviewed the manuscript for important intellectual content. All authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Patient consent for publication Not required.
Ethics approval The Research Ethics Committee classified this study as exempt according to the Medical Research Involving Human Subjects Act (16–797/C).
Provenance and peer review Not commissioned; externally peer reviewed.
Data availability statement Data are available upon reasonable request.