How well are we doing? Families of adolescents or young adults with cerebral palsy share their perceptions of service delivery.
OBJECTIVE
The satisfaction of families of adolescents and young adults with a diagnosis of cerebral palsy with the service delivery they had experienced in the areas of health, education, recreation, employment, housing and transportation was examined. Common themes across the six service areas were identified.


METHODS
Forty-nine adolescents (13-15 years) and 39 young adults (19-23 years) and their families rated their satisfaction with services and then participated in semi-structured interviews to discuss their experiences.


RESULTS
Using a constant comparative method of analysis, common themes were identified from the transcribed interviews. Four themes were identified and named: caring and supportive people; fighting and fatigue; communication/information; and disability awareness.


CONCLUSIONS
Families continue to experience dissatisfaction and frustration with service delivery in the six areas examined. Both bureaucratic structure and attitudes of service providers contribute to their dissatisfaction.
Darrah
J
J
Faculty of Rehabilitation Medicine, 3-50 Corbett Hall, University of Alberta, Edmonton, AB, Canada T6G 2G4. johanna.darrah@ualberta.ca
Magil-Evans
J
J
Adkins
R
R
D000293:Adolescent; D000328:Adult; D001291:Attitude of Health Personnel; D002170:Canada; D002547:Cerebral Palsy / Q000534:rehabilitation*; D003142:Communication; D003258:Consumer Behavior; D003430:Cross-Sectional Studies; D005190:Family; D005221:Fatigue; D006801:Humans; D011369:Professional-Patient Relations; D011787:Quality of Health Care; D012944:Social Support