Caregivers' experiences of having a child with cerebral palsy. A meta-synthesis

Abstract

Aim: To synthesize qualitative research findings of caregiver experiences and challenges in caring for and raising a child with cerebral palsy.

Design: A systematic review and meta-synthesis.

Methods: Four electronic databases: CINAHL, Embase, OVID Medline, and Cochrane, were systematically searched for qualitative research papers published before December 2022. Two independent reviewers assessed eligibility and further appraised the quality of methodology using the Critical Appraisal Skills Program (CASP) tool for qualitative research. A content thematic analysis approach was used to synthesize the qualitative research findings, construct core subthemes, and synthesize themes.

Results: Sixty-seven findings were extracted from the 12 included studies. The findings were grouped into eleven sub-themes and then into five synthesized themes. The synthesized themes are 1. Need for convenient healthcare facilities, therapeutic services, and accessible public places, 2. Need for healthcare information and financial aid, 3. Psychological, and physical constraints, 4. Societal rejection and stigma, and 5. Overwhelming caring burden.

Conclusion: Caregivers face many challenges in adjusting their lifestyles to meet the needs of the child with cerebral palsy. Some adjustments reported included giving up full-time jobs and businesses to be full-time caregivers, giving up leisure activities, and confinement to one place.

Keywords: Caregiver; Cerebral palsy; Child; Experiences; meta-synthesis.