The Lifetime Influence of Families in the Lives of Women with Cerebral Palsy

Friday, 3 August 2012: 10:15 AM

Donna Freeborn, APRN, PhD
College of Nursing, Brigham Young University, Provo, UT
Kathleen Knafl, PhD, FAAN
School of Nursing, The University of North Carolina at Chapel Hill, Chapel Hill, NC

Learning Objective 1: The learner will be able to describe supportive family roles for women with cerebral palsy.

Learning Objective 2: The learner will identify ways in which nurses and health care providers can assist families support their children with cerebral palsy.

Purpose: Drawing on data from a qualitative study of 8 adult women with CP, the purpose of this qualitative descriptive study was to examine their perceptions of ways their families and individual family members contributed to their overall quality of life and adaptation to CP.  

Methods: The study was based on a feminist biographical approach, which combines biographical methods with feminist principles. Participants participated in two interviews where they shared numerous stories about their family life, parents, siblings, and extended families. Interviews were transcribed verbatim, and transcriptions were analyzed for common themes according to qualitative methodology.

Results: Participants provided considerable, rich contextual data on their family life.  Four themes appeared related to supportive roles their family played in their life: 1) being an advocate, and teaching advocacy, 2) promoting inclusion and acceptance, 3) integrating therapy into daily life, and 4) being a friend and mentor.  Participants with supportive families learned positive coping methods, developed self-determination, had a broad support system that assisted them face challenges associated with growing up and living with cerebral palsy, and reported a hope for the future not expressed by participants who described unsupportive families.

Conclusion: Nurses and health care providers can contribute to the family’s ability to develop supportive roles by providing guidance on how to be advocates and teach advocacy, include the child with CP in family activities, access therapy and incorporate beneficial therapies at home, and promote healthy sibling relationships.