218113 Identifying unique profiles of family needs: Perspectives of parents of children and youth with cerebral palsy

Tuesday, November 9, 2010

Nihad Almasri, MS, PT , Physical Therapy and Rehabilitation Sciences, Drexel University, Philadelphia, PA
Margaret O'Neil, PhD, MPH, PT , Physical Therapy and Rehabilitation Sciences, Drexel University, Philadelphia, PA
Robert Palisano, ScD, PT , Physical Therapy and Rehabilitation Sciences, Drexel University, Philadelphia, PA
Carl Dunst, PhD , Orelena Hawks Puckett Institute, Ashville, NC
Lisa Chiarello, PhD, PT , Physical Therapy and Rehabilitation Sciences, Drexel University, Philadelphia, PA
Marcia Polansky, Ms, ScD, MSW , Drexel School of Public Health, Philadelphia, PA
Purpose: Cerebral palsy (CP) is a non-progressive neurodevelopmental disorder. Prevalence estimates are from 2 to 4.4 cases/1000 live births. Individual annual costs can exceed $921,000. This study describes unique profiles of family needs based on perspectives of parents of children and youth with CP. Methods: A cross-sectional study was conducted in seven children's hospitals. Parents (n=579) of children/youth with CP completed questionnaires (i.e., Family Needs Survey). Mean child age was 114.5 years(2-21 years). Gross motor function was classified using the Gross Motor Function Classification System (GMFCS) (Level I = walks without restrictions, Level V = no independent walking). Results: A K-mean cluster analysis identified four unique profiles of needs: families with low needs (51%), families with very high needs on community and financial resources (20%), families with high needs on child health condition (18%), and families with exceptionally high needs on family functioning (11%). Families with the fewest needs had children at GMFCS Level I, good family relationships, and better access to services. Families in profiles of higher need had children at GMFCS Levels IV and V, fewer resources/services and challenging family relationships. Discussion: The results suggest that profiles of family needs are influenced by child/youth gross motor function; family resources and function; and provision of services. Conclusion: The variability in profiles of family needs reflects the heterogeneity among individuals with CP. Health providers, administrators and policy makers should consider variety and flexibility in health services/resources to best meet the needs of children and youth with CP and their families.

Learning Areas:
Advocacy for health and health education
Conduct evaluation related to programs, research, and other areas of practice
Other professions or practice related to public health
Program planning

Learning Objectives:
1)Describe characteristics of families with children and youth with cerebral palsy 2)Describe profiles of family needs as reported by parents of children and youth with cerebral palsy 3)Discuss the differences among profiles of family needs based on select family, child/youth and service characteristics

Keywords: Children With Special Needs, Family/Consumer Perspective

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I am a committee member for this PhD student's (Nihad Almarsi)doctoral dissertation upon which this abstract is based. I provide research and clinical rehabilitation expertise to the dissertation process.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.

Back to: 4329.0: MCH Poster Session II