Doctor of Philosophy (PhD) in Physical Therapy
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College of Health Care Sciences - Physical Therapy Department
Publication Date / Copyright Date
Nova Southeastern University
Jason Eric Cook. 2019. Caring for Children with Severe Cerebral Palsy: The Lived Experience of Parents. Doctoral dissertation. Nova Southeastern University. Retrieved from NSUWorks, College of Health Care Sciences - Physical Therapy Department. (191)
The purpose of this study is to explore the lived experience of parents who care for their child withcerebral palsy who function at Gross Motor Function Classification System (GMFCS) Level V. Additionally, the study also explores the parent’s understandings and beliefs about pain and non-pain related emotional distress, and the meaning of caring, providing care, and providing comfort for their child with GMFCS Level V cerebral palsy. The study was conducted using a qualitative, hermeneutic phenomenology approach with semi-structured interviews and participant-initiated journaling. The study included 11 participants who are caregiving parents of their child with GMFCS Level V cerebral palsy. Data were collected using audio-recorders, field notes, and journals. Audio recordings were transcribed and data were analyzed using the constant comparison method.
Four themes emerged from the analysis: (1) Life is hard, heavy with burden, worry, and love; (2) Remarkable; (3) Identity transformation and empowerment towards authenticity; and (4) Living a life that is planned, forced with structure and without spontaneity. Findings from this study bring to light the participants’ experience of care which manifests through worry, love, and duty. Parents are able to differentiate pain from emotional distress by observing and learning to communicate with their child. Parents believe that communicating with their child requires patience, sensitivity, time, awareness of the child's experiences, and is essential for their child to experience well-being.
Understanding gained from this study includes an awareness of self-efficacy that evolves in parents who care for their child with severe forms of cerebral palsy, the importance in providing family-centered-care, and a conceptual exploration of the physical therapists experience in using developmental tact in the care of the pediatric population.
Cerebral palsy, Distress, Pain, Parenting, Phenomenology