Peer-reviewed article
Perceptions of the Body in Cerebral Palsy: Voices of Family Caregivers.
Ferreira MCP, Defilipo ÉC, Nunes LC, de Carvalho PHB ·
Summary
Written by AI, not yet AICS's view · claude-haiku-4-5-20251001This qualitative study explored how family caregivers perceive the bodies and abilities of children and adolescents with cerebral palsy through focus groups with 22 mothers and grandmothers. Caregivers held mixed views: some saw the body as capable of learning and performing activities with support, while others viewed it as dependent and fragile requiring constant supervision. The researchers found that caregivers' cultural beliefs and perceptions about the body shape how children with cerebral palsy participate in family life and receive care. The study concludes that expanding caregivers' knowledge about cerebral palsy could help promote children's participation and reduce limiting beliefs.
Key points
- Cerebral palsy is the most prevalent physical disability in the pediatric population, with higher prevalence in low- and middle-income countries
- Caregivers held three distinct perception themes: the body within social interactions, the body as capable when stimulated and taught, and the body as dependent requiring constant supervision
- Caregivers' perceptions of the body act as contextual and cultural indicators that shape children's participation, care practices, and well-being within the family
- Study included 22 mothers and grandmothers recruited from rehabilitation services in focus group discussions
- Findings highlight the need to expand family caregivers' knowledge about cerebral palsy to promote participation and mitigate beliefs about limitations and dependence
Limitations
The study does not specify the country or countries where it was conducted, making it impossible to assess geographic scope or applicability. The qualitative design with focus groups provides rich narrative data but cannot generalize findings to all caregivers of children with cerebral palsy, and the small sample size of 22 participants limits broader applicability.
Abstract
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.