Adults with Cerebral Palsy: Factors Influencing Independent Living and Perceived Quality of Life.

Research Report
Population: Adult

Eunice Yu Chiu Shen, PT, PhD, DPT, PCS, Physical Therapy Education Coordinator, California Children’s Medical Services, Department of Public Health, County of Los Angeles

Darcy Umphred, PT, PhD, FAPTA, Emeritus Professor, Pacific University

Jane Sweeney, PT, PhD, FAPTA, PCS, Director, Doctor of Pediatric Science Program, Rocky Mountain University of Health Professions

Kim Nixon-Cave, PT, PhD, PCS, Associate Professor, Jefferson University

Keywords: Participation, Cerebral palsy, Community Living, Quality of Life


Purpose: As the lifespan of individuals with cerebral palsy (CP) increases, there is a need to understand the impact of disability on quality of life (QoL) and to explore the challenges to community living. This study explored and identified the experience of adults with CP living in their communities and examined factors influencing activity level, participation, and perceived QoL. The specific aims of the study were: (1) Determine the relationship between Gross Motor Function Classification System levels and the World Health Organization Disability Assessment II (WHODAS II) physical domain, (2) Compare the domains of the WHODAS II and World Health Organization Quality of Life-BREF (WHOQOL-BREF), and (3) Examine the relationship among physical and social demographic factors and the WHOQOL-BREF. The qualitative inquiry was: For adults with CP, which factors influence living independently in the community and affect perceived quality of life?

Research Design: This study used a sequential mixed method design. The first phase was a quantitative study which had a study sample (n=30) selected by purposeful sampling. The second phase was a qualitative study (n=15) that used a descriptive phenomenological approach with open-ended questions in a semi-structured interview format.

Participants and Setting: Thirty adults with CP (age range: 19y. – 61y.) were recruited in California for the quantitative study. A subgroup of 15 was selected by purposive sampling for the qualitative study. The study took place in the participants’ natural environment.

Materials/Methods: Data collected from the WHODAS II and WHOQOL-BREF surveys informed the quantitative study. The qualitative study used the WHOQOL-BREF as a guide to develop interview questions. SPSS 17.0 was used to analyze descriptive and nonparametric quantitative data. The alpha level was 0.05 a priori. Qualitative content analysis techniques were used to analyze interview transcriptions. N Vivo-8 software was used to manage the high volume of data. Excellent level of agreement, Kappa value of 87% and 89%, was calculated by the second and third transcriptions.

Results: Quantitative analysis null hypothesis were accepted. Correlations were not stronger than r equal/greater than 0.75. Of the 13 themes that emerged from the qualitative inquiry, having life skills, making choices, and participation in activities, school, or work were important factors for living independently in the community. Perceived QoL was not determined by physical or motor abilities.

Conclusions: Participation in activities, school, or work influenced living independently in the community and perceived QoL. Motor level and degree of impairments did not determine living independently or perceived QoL.

Clinical Relevance: This study suggests many directions for future research. Greater understanding of how hope, self-esteem, social supports, life skills, and the impact of aging may enhance community living and QoL for adults with CP.

Shen, Eunice Yu Chiu, PT, PhD, DPT, PCS; Umphred, Darcy , PT, PhD, FAPTA; Sweeney, Jane , PT, PhD, FAPTA, PCS; Nixon-Cave, Kim , PT, PhD, PCS. Adults with Cerebral Palsy: Factors Influencing Independent Living and Perceived Quality of Life.. Poster Presentation. IV STEP Conference, American Physical Therapy Association, Columbus, OH, July 17, 2016. Online.