Comparing parent and child reports of health-related quality of life and their relationship with leisure participation in children and adolescents with Cerebral Palsy.
Kids with cerebral palsy see their own quality of life more positively than their parents do—always collect both views.
01Research in Context
What this study did
Longo et al. (2017) asked kids with cerebral palsy and their parents to rate the child’s health-related quality of life.
They also recorded how often the child joined sports, clubs, and other leisure activities.
The goal was to see if child and parent answers matched, and if more leisure time went hand-in-hand with higher quality-of-life scores.
What they found
Children gave themselves higher quality-of-life scores than their parents gave them.
The two sets of scores only weakly agreed, and leisure participation showed only small, spotty links to quality-of-life domains.
How this fits with other research
Aza et al. (2024) repeated the same parent–child comparison with Spanish-speaking families and saw the same gap, strengthening the rule: ask the child, not just the parent.
Badia et al. (2016) extended the picture by showing that home and school barriers—not leisure time—were the strong predictors of parent-rated quality of life.
Across other diagnoses, the pattern holds. Chezan et al. (2019) and Ding et al. (2017) found children with developmental coordination disorder and autism also rate their own quality of life higher than their parents do, so the mismatch is not unique to cerebral palsy.
Why it matters
If you rely only on parent forms, you may underestimate a child’s well-being. Start every assessment by interviewing the child in age-friendly language. Use parent reports as a second source, not the final word. When leisure participation is low, look past the calendar and check for environmental barriers at home and school—those may be the real targets for intervention.
Want CEUs on This Topic?
The ABA Clubhouse has 60+ free CEUs — live every Wednesday. Ethics, supervision & clinical topics.
Join Free →Add a five-question child self-report to your QoL form and compare it with the parent version before writing goals.
02At a glance
03Original abstract
The aim of this study was to examine the level of agreement between reports of health-related quality of life (HR-QoL) obtained from children and adolescents with cerebral palsy (CP) and their parents. We also examined the relationships between child and parent perception of the different domains of HR-QoL and participation dimensions. Sixty-nine children and adolescents with CP and their parents separately completed parallel forms of the KIDSCREEN questionnaire. The Spanish version of the Children's Assessment of Participation and Enjoyment (CAPE) was completed by the child/adolescent. Concordance between the children's and the parents' HR-QoL scores was analyzed via Pearson and intraclass correlations. Differences in means were tested using paired Student's t-tests. Chi-square tests were using to assess the incidence of personal variables in the agreement and disagreement of children-parents' responses. The relationships between HR-QoL and leisure participation was confirmed with Pearson's correlation coefficients. Correlations between child and parent HR-QoL scores were small in 7 domains, medium in 2 and large in the Social Support & Peers domain. Children reported significantly better HR-QoL than their parents did. Participation was positively associated with specific domains of HR-QoL, but only weakly, and there were discrepancies between parent and child reports of HR-QoL. These findings provide interesting information about the importance of hearing the voices of children and adolescents with CP to promote HR-QoL and leisure participation.
Research in developmental disabilities, 2017 · doi:10.1016/j.ridd.2017.09.020