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Background <p>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.</p> Method <p>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.</p> Results <p>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.</p> Conclusion <p>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.</p>

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Existential concerns among parents raising children with or at high risk of cerebral palsy: a qualitative meta-synthesis

  • 期刊论文

  • 出版模式：

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  • 发表日期：

    2026年8月1日

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  • Abiola O. Fafolahan,
  • Hameed Oladipupo,
  • Emmanuel Akinwunmi

摘要

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.