Peer-reviewed article
Fathers' experiences of caring for children with developmental disabilities.
Deniz S, Evgin D ·
Summary
Written by AI, not yet AICS's view · claude-haiku-4-5-20251001This qualitative study explored the caregiving experiences of 19 fathers of children with developmental disabilities such as autism spectrum disorder, Down syndrome, and intellectual disabilities. Fathers reported both significant challenges including psychological distress, financial burden, and social stigma, as well as personal growth and meaning-making through caregiving. The research found that fathers need better access to formal support systems and that healthcare providers should actively include fathers in care planning and support services. The study highlights that fathers are important caregivers whose experiences have been overlooked in previous research.
Key points
- Fathers experienced psychological distress, future-oriented anxiety, and financial burden alongside caregiving responsibilities
- Social attitudes and stigma created challenges, but fathers also reported emotional engagement and active participation in daily care
- Fathers identified significant barriers to accessing services and called for more father-inclusive support systems
- Caregiving was associated with both burden and resilience, including personal growth and meaning-making
- Pediatric nurses should include fathers in assessment, communication, education, and care planning for family-centered care
Limitations
The study does not specify which countries the fathers were from, limiting understanding of how cultural and systemic contexts shape their experiences. The sample size of 19 fathers and qualitative design mean findings cannot be generalized to all fathers of children with developmental disabilities.
Abstract
Background Although caregiving for children with developmental disabilities has been widely examined, fathers' experiences remain relatively underexplored. This qualitative descriptive study explored fathers' caregiving experiences in the context of children with developmental disabilities, focusing on psychological, social, economic, and systemic dimensions of caregiving and fathers' coping and adaptation processes. Design and methods A qualitative descriptive design was used. Data were collected through semi-structured, in-depth interviews with 19 fathers of children diagnosed with developmental disabilities, including autism spectrum disorder, Down syndrome, and intellectual disabilities. Participants were recruited using purposive sampling. Interviews were audio-recorded, transcribed verbatim, and analyzed using Braun and Clarke's thematic analysis. Rigor was ensured through credibility, dependability, confirmability, and transferability strategies, and reporting followed COREQ guidelines. Results Six themes were identified: meaning and transformation of fatherhood, multidimensional burden and challenges, social attitudes and support versus stigma, redefinition of the paternal role, need for formal support systems, and coping and adaptation. Fathers reported psychological distress, future-oriented anxiety, financial burden, social challenges, service-related barriers, and a need for more accessible father-inclusive support. Caregiving was also associated with personal growth, meaning-making, emotional engagement, and active participation in daily care. Conclusions Fathers' caregiving experiences reflected both burden and resilience, shaped by personal, social, and systemic factors. Recognizing fathers as active caregivers is essential for strengthening family-centered pediatric care. Implications for pediatric nursing Pediatric nurses should include fathers in assessment, communication, education, care planning, and support services to address caregiver burden and support family-centered pediatric care.