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

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 (CP GMFCS 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 CP GMFCS 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.