Literature DB >> 12171644

How well are we doing? Families of adolescents or young adults with cerebral palsy share their perceptions of service delivery.

J Darrah1, J Magil-Evans, R Adkins.   

Abstract

PURPOSE: 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.
METHOD: 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.

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Year:  2002        PMID: 12171644     DOI: 10.1080/09638280210121359

Source DB:  PubMed          Journal:  Disabil Rehabil        ISSN: 0963-8288            Impact factor:   3.033


  3 in total

1.  Experiences of patients and service providers with out-patient rehabilitation services in a rehabilitation centre in the Western Cape Province.

Authors:  Anne Kumurenzi; Charlyn Goliath; Gubela Mji; Nondwe Mlenzana; Conran Joseph; Sue Stathum; Anthea Rhoda
Journal:  Afr J Disabil       Date:  2015-12-10

2.  Parental Perspectives on Quality of Life in Adolescents with Cerebral Palsy.

Authors:  Prabhu Prajakta; Sunila John; Rajashekhar Bellur
Journal:  Indian J Psychol Med       Date:  2020-04-25

3.  The Nature of Patient- and Family-Centred Care for Young Adults Living with Chronic Disease and their Family Members: A Systematic Review.

Authors:  David Allen; Nerina Scarinci; Louise Hickson
Journal:  Int J Integr Care       Date:  2018-05-18       Impact factor: 5.120

  3 in total

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