Abstract

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.

Author Details

Freeborn, Donna, APRN, PhD; Knafl, Kathleen, PhD, FAAN

Sigma Membership

Iota Iota

Type

Presentation

Format Type

Text-based Document

Study Design/Type

N/A

Research Approach

N/A

Keywords:

Cerebral Palsy, Families, Qualitative Research

Conference Name

23rd International Nursing Research Congress

Conference Host

Sigma Theta Tau International

Conference Location

Brisbane, Australia

Conference Year

2012

Rights Holder

All rights reserved by the author(s) and/or publisher(s) listed in this item record unless relinquished in whole or part by a rights notation or a Creative Commons License present in this item record.

All permission requests should be directed accordingly and not to the Sigma Repository.

All submitting authors or publishers have affirmed that when using material in their work where they do not own copyright, they have obtained permission of the copyright holder prior to submission and the rights holder has been acknowledged as necessary.

Acquisition

Proxy-submission

Share

COinS
 

The lifetime influence of families in the lives of women with cerebral palsy

Brisbane, Australia

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.