Abstract:
BACKGROUND : There is limited knowledge regarding the perceived participation of
children with long-term health conditions in everyday activities. Children may have
perceptions that differ from those of their primary caregivers. It is unclear whether
children and caregivers rate their participation in everyday situations in the same
way.
OBJECTIVES : We aimed to explore the level of agreement pertaining to perceived
participation (attendance and involvement) and examine whether differences
exist in the rank order of activities selected as the three most important
between reports from children with long-term health conditions and their
primary caregivers.
METHODS : The simplified Chinese version of the Picture My Participation (PMP-C;
Simplified) was used in an interview with children with long-term health
conditions; meanwhile, their primary caregivers finished the questionnaire
independently. Data were analyzed using Wilcoxon tests, weighted kappa values,
and Spearman’s rank order correlation.
RESULTS : Children with long-term health conditions reported significantly lower
attendance scores for six activity items (p < 0.05) and higher involvement scores
for two activity items (p < 0.05) than their primary caregivers did. An overall
slight to fair agreement in perceived participation was found at the
child–caregiver dyad level, though differences in dyads were observed. A strong
correlation was identified between the rank order of the most important
activities for both groups (r = 0.81).
CONCLUSIONS : Differences may exist between the perceived participation of
children with long-term health conditions, as reported by primary caregivers
and the children themselves. The findings highlight that children with long-term
health conditions exhibit unique views with respect to their perceived
participation and have to be asked regarding their perceptions themselves.
