Perceptions of the Body in Cerebral Palsy: Voices of Family Caregivers.

Background/

Objectives

Cerebral palsy (CP) is the most prevalent physical disability in the pediatric population, resulting in functional limitations and restrictions in participation, with higher prevalence rates in low- and middle-income countries. Caregivers of children and adolescents with CP face both physical and emotional challenges, and their perceptions of the body may act as contextual and cultural indicators shaping children's participation, care practices, and well-being within the family environment. This study aimed to understand the perceptions, values, and cultural beliefs of family caregivers about the bodies of children and adolescents with CP.

Methods

A qualitative study was conducted using six focus groups with 22 mothers and grandmothers of children and adolescents with CP. Participants were recruited from rehabilitation services. Discussions were audio-recorded, transcribed verbatim, and analyzed using content analysis. The analytical process involved systematic coding, categorization, and thematic interpretation to identify recurring meanings and patterns across narratives.

Results

Three thematic categories emerged: (1) perceptions of the body within social interactions; (2) viewing the body as capable of performing activities independently when stimulated/taught; and (3) viewing the body as dependent, requiring constant supervision and support.

Conclusions

The findings highlight the need to expand family caregivers' knowledge about CP to promote children's participation and mitigate beliefs related to limitations, dependence, fragility, and vulnerability.