Understanding the Lived Experience of Caring for a Child With Severe Cerebral Palsy: A Critical Step Toward Psychologically Informed Family-Centered Care

Abstract

Objective: The purpose of this study was to explore the lived experience of parents who care for children with cerebral palsy who function at a Gross Motor Function Classification System Level V, their beliefs about pain and non-pain-related emotional distress, and what it means to provide care and comfort.

Methods: A phenomenological research design was used. Eleven participants were involved in this study. Pilot interviews informed the interview guide. Data were collected via participant journals and semi-structured interviews and analyzed using van Manen's framework for understanding experience. Trustworthiness criteria were met through a variety of strategies to ensure a rigorous research process.

Results: Four themes were revealed in this study: "life is hard, heavy with burden, worry, and love," "remarkable," "identity transformation and empowerment," and "living a life that is planned, forced with structure and without spontaneity."

Conclusion: Caring for a child with lifelong needs is complex and requires a sensitive awareness of the contextual factors that impact daily decisions and routines. Understanding the lived experiences of parents who care for children with cerebral palsy Gross Motor Function Classification System Level V is necessary to provide psychologically informed, family-centered care. Comfort theory is presented as a framework for understanding what factors influence comfort and well-being. Understanding the complex nature of comfort for an individual can lead to greater understanding and empathy-driven care. These results will provide a foundation for future studies that aim to enhance pediatric physical therapist care through provider empathy and understanding.

Impact: Caregiving parent experiences are impactful and play a large role in the life of children with developmental disabilities. Research exploring the lived experience of caregivers may enhance empathy-driven, psychologically informed, family-centered physical therapist care throughout the life course.

Lay summary: If you are a parent who cares for a child with severe cerebral palsy, you have unique experiences that impact day-to-day activities and lifelong planning for your family and child.

Keywords: Caregivers; Cerebral Palsy; Child; Developmental Disabilities; Disabled Children; Pain.