Existential concerns among parents raising children with or at high risk of cerebral palsy: a qualitative meta-synthesis
- 1Department of Physiotherapy, Federal Medical Centre, Abeokuta, Nigeria
- 2College of Health Sciences, University of KwaZulu-Natal, Private Bag X54001, Durban, South Africa
- 3Division of Public Health, Sport and Wellbeing, Faculty of Health, Medicine and Society, University of Chester, Chester, CH1 4BJ UK
Abstract
Background: Parenting a child with cerebral palsy (CP) or an infant at high risk involves complex, long-term caregiving that goes beyond physical and psychological demands. These experiences remain underexplored in the literature. This study systematically synthesizes qualitative evidence on the existential concerns of parents raising children with or at high risk of CP.
Method: A qualitative meta-synthesis was conducted following PRISMA and ENTREQ guidelines. A comprehensive search of Cochrane Library, Scopus, PubMed, and Web of Science was performed in February 2026. Eligible studies included qualitative research exploring lived or existential experiences of parents or primary caregivers of children with CP or infants at high risk. Study selection, data extraction, and quality appraisal (using the Joanna Briggs Institute checklist) were conducted independently by reviewers. Thematic synthesis was employed to integrate findings across studies.
Results: Twenty-four studies met the inclusion criteria. Six interrelated existential themes emerged: (1) disrupted life trajectory, characterized by shock, loss of imagined futures, and chronic sorrow; (2) embodied caregiving and physical co-suffering, reflecting physical exhaustion and bodily identification with the child’s suffering; (3) identity reconstruction, involving the transition to a caregiver identity, loss of prior roles, and emergence of advocacy; (4) relational existentiality, marked by social isolation, stigma, and marginalization; (5) search for meaning and spiritual resilience, including meaning-making, purpose, and adaptive hope; and (6) mortality awareness and lifelong responsibility, encompassing fear of the child’s future and enduring ethical burden. These findings illustrate that caregiving is experienced as an existential transformation affecting multiple dimensions of parents’ lived worlds.
Conclusion: Parenting a child with or at high risk of CP constitutes a profound existential journey that reshapes parents’ sense of self, time, relationships, and meaning. Recognizing these dimensions is critical for developing holistic, family-centered interventions that address not only practical caregiving needs but also the deeper existential realities of parents.
Supplementary Information: The online version contains supplementary material available at https://doi.org/10.1186/s12887-026-07460-8.
Related
- Family and informal caregivers’ acceptance, concerns and expectations regarding artificial intelligence-enabled dementia care: a protocol for qualitative evidence synthesis
- Therapists' perspectives on the use of an overground lower-limb exoskeleton in physiotherapy sessions for minimally ambulatory children with cerebral palsy: a qualitative study
- Experiences of social participation and inclusion among primary caregivers of children with cerebral palsy in China: a qualitative descriptive study.
- Parental experiences of death preparedness at the end of life of their children: a qualitative meta-synthesis.
- Quality of life domains among caregivers of children with special health care needs in South Asia: a qualitative evidence synthesis.
BibTeX
@article{fafolahan2026existential,
title = {{Existential concerns among parents raising children with or at high risk of cerebral palsy: a qualitative meta-synthesis}},
author = {Abiola O. Fafolahan and Hameed Oladipupo and Emmanuel Akinkunmi},
journal = {BMC Pediatrics},
year = {2026},
month = aug,
doi = {10.1186/s12887-026-07460-8},
url = {https://doi.org/10.1186/s12887-026-07460-8},
note = {CC BY-NC-ND 4.0},
}
RIS
TY - JOUR
TI - Existential concerns among parents raising children with or at high risk of cerebral palsy: a qualitative meta-synthesis
AU - Abiola O. Fafolahan
AU - Hameed Oladipupo
AU - Emmanuel Akinkunmi
PY - 2026
DA - 2026/08/01
JO - BMC Pediatrics
DO - 10.1186/s12887-026-07460-8
UR - https://doi.org/10.1186/s12887-026-07460-8
AB - Background: Parenting a child with cerebral palsy (CP) or an infant at high risk involves complex, long-term caregiving that goes beyond physical and psychological demands. These experiences remain underexplored in the literature. This study systematically synthesizes qualitative evidence on the existential concerns of parents raising children with or at high risk of CP. Method: A qualitative meta-synthesis was conducted following PRISMA and ENTREQ guidelines. A comprehensive search of Cochrane Library, Scopus, PubMed, and Web of Science was performed in February 2026. Eligible studies included qualitative research exploring lived or existential experiences of parents or primary caregivers of children with CP or infants at high risk. Study selection, data extraction, and quality appraisal (using the Joanna Briggs Institute checklist) were conducted independently by reviewers. Thematic synthesis was employed to integrate findings across studies. Results: Twenty-four studies met the inclusion criteria. Six interrelated existential themes emerged: (1) disrupted life trajectory, characterized by shock, loss of imagined futures, and chronic sorrow; (2) embodied caregiving and physical co-suffering, reflecting physical exhaustion and bodily identification with the child’s suffering; (3) identity reconstruction, involving the transition to a caregiver identity, loss of prior roles, and emergence of advocacy; (4) relational existentiality, marked by social isolation, stigma, and marginalization; (5) search for meaning and spiritual resilience, including meaning-making, purpose, and adaptive hope; and (6) mortality awareness and lifelong responsibility, encompassing fear of the child’s future and enduring ethical burden. These findings illustrate that caregiving is experienced as an existential transformation affecting multiple dimensions of parents’ lived worlds. Conclusion: Parenting a child with or at high risk of CP constitutes a profound existential journey that reshapes parents’ sense of self, time, relationships, and meaning. Recognizing these dimensions is critical for developing holistic, family-centered interventions that address not only practical caregiving needs but also the deeper existential realities of parents. Supplementary Information: The online version contains supplementary material available at https://doi.org/10.1186/s12887-026-07460-8.
SN - 1471-2431
ER -