Daily life participation in childhood chronic disease: a qualitative study

Abstract

ObjectiveOpportunities 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.MethodsQualitative 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.Results31 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.ConclusionsEnabling 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.

Perspectives on life participation by young adults with chronic kidney disease: an interview study

“…Our findings reflect those of previous studies, 24 which have also found that young adults with childhood-onset CKD report difficulties with education, employment and social relationships, 25–28 and perceive that their lives are ‘on hold’. 29 30 These problems of life participation have also been documented in studies in young people diagnosed with other childhood chronic conditions, including cystic fibrosis, haematological and autoimmune disease, who also feel impaired in their social interactions and capacity to keep up with peers 31 and have lower life satisfaction. 32 Our study further reveals that young adults believe that missing school and social opportunities, and being ‘overprotected’ during childhood caused them to lack the fundamental skills and confidence for social interaction, and develop independence to participate in life as autonomous adults.…”

Daily life participation in childhood chronic disease: a qualitative study on the child’s and parent’s perspective

“…1 We previously described the child's perspective on 'full participation' among children with a chronic disease. 6 We found that these children feel that participation encompasses more than engaging in activities; indeed, they described having a sense of belonging, the ability to affect social interactions, and the capacity to keep up with healthy peers as key elements. [6][7][8][9][10] Parents form their child's primary social network and can have a major impact on their child's daily life participation, especially because the presence of a chronic disease can affect the parent-child relationship and What is known about the subject?…”

“… 1 We previously described the child’s perspective on ‘full participation’ among children with a chronic disease. 6 We found that these children feel that participation encompasses more than engaging in activities; indeed, they described having a sense of belonging, the ability to affect social interactions, and the capacity to keep up with healthy peers as key elements. 6–10 …”

“… 28 Interestingly, in our interviews parents described participation as primarily a means to achieve well-being, whereas children described participation as more of a goal in itself, as we previously reported. 6 This apparent discrepancy underscores the importance of establishing a dialogue regarding how participation should take place. Several aspects found in this study are in line with other major themes in qualitative studies among children with various chronic diseases and their parents.…”

“… 20 25 26 Our previous report focused on our analysis of the children’s interviews. 6 Here, we first analysed all of the transcripts of the parents’ interviews and then analysed the children’s and parents’ paired transcripts in order to determine how children and their parents interrelate when their participation goals are not aligned. Two researchers (MMN-vdV and EEBvdS) started with open coding, after which the identified codes were reviewed by the remaining core team researchers (MCK and SLN) in order to reach consensus on the interpretation of the concepts.…”