Community participation and family quality of life – comparative study of children with cerebral palsy and children with typical development

Abstract

Children with developmental disabilities, including cerebral palsy (CP), often experience restriction in community participation. The previous empirical and theoretical consideration of community participation of children with CP did not take into account the family quality of life (FQOL) as a potential factor that could have affected the participation of these children. The aim of this study was to examine the association between community participation of children with CP and FQOL and draw comparisons with their peers with typical development (TD). The sample of this descriptive, cross-sectional and comparative research consisted of 109 families with children with CP and 133 families with children with TD, both genders, aged between seven and 18 years. The Participation and Environment Measure for Children and Youth (PEM-CY) and The Beach Center Family Quality of Life Scale (Beach FQOL Scale) were used. The Spearman’s rank-order correlation coefficients were calculated to test the strength of a relationship between two sets of data for each group separately. The results indicate interrelation between the subjective dimension of community participation as expressed through parental desire for change, and both parenting aspect of family life (ρ=-.24) and social and emotional support within the family emotional well-being (ρ=-.20) in the group of children with CP. However, a greater number of statistically significant correlations is confirmed in the group of children with TD. Comparing the distribution of results between the two groups, the most noticeable is the absence of connection between FQOL and diversity and frequency of community participation in the group of children with CP, which is confirmed in the group of children with TD. The conclusion underlines that the reflection of changes that affect family life after the birth of a child with CP can be seen in various aspects of FQOL.