"If I had been given that information back then": An interpretive description exploring the information needs of adults with cerebral palsy looking back on their transition to adulthood

被引:32
作者
Freeman, M. [1 ,2 ]
Stewart, D. [1 ,2 ]
Cunningham, C. E. [3 ]
Gorter, J. W. [1 ,2 ,4 ]
机构
[1] McMaster Univ, Sch Rehabil Sci, 1280 Main St W, Hamilton, ON L8S 4L8, Canada
[2] McMaster Univ, CanChild Ctr Childhood Disabil Res, Hamilton, ON, Canada
[3] McMaster Univ, Fac Hlth Sci, Michael G DeGroote Sch Med, Dept Psychiat & Behav Neurosci, Hamilton, ON, Canada
[4] McMaster Univ, Fac Hlth Sci, Dept Pediat, Hamilton, ON, Canada
关键词
cerebral palsy; information needs; qualitative; transition; COURSE HEALTH DEVELOPMENT; GROSS MOTOR FUNCTION; YOUNG-ADULTS; PARENTS; CHILDREN; LIFE; CLASSIFICATION; DISABILITIES; EXPERIENCES; EMPLOYMENT;
D O I
10.1111/cch.12579
中图分类号
B844 [发展心理学(人类心理学)];
学科分类号
040202 ;
摘要
BackgroundYoung people with cerebral palsy (CP) and their families have identified lack of information received during the transition to adulthood as a barrier to successful outcomes. To date, few studies have explored the information needs, preferences, timing, and method of provision from the perspective of individuals with CP. MethodThe methodological approach to this qualitative study was interpretive description. Nine adults living with CP, between the ages of 20 and 40, were purposively recruited in Ontario, Canada, to explore, retrospectively, their information needs during the transition to adulthood. Participants completed a 1-hour interview that explored their experiences seeking and receiving information. Interviews were transcribed verbatim, and data were analysed to create a thematic description of adults' experiences with information. ResultsThree themes emerged: (a) Recognizing and supporting information needs, which highlighted the importance of support systems to assist young people in receiving and seeking information throughout the transition; (b) Getting creative, which highlighted strategies young people use when confronted with environmental barriers when seeking information; and (c) Gaps and advice for the future, which highlighted the need for real-life opportunities, during the transition to adulthood, to experience some of the responsibilities of adult life. ConclusionClinicians assisting young people with CP need purposefully to foster knowledge and skills during the transition to adulthood. They should be not only providers of information but also enablers of opportunities for immersion in real-life experiences to prepare for adult life. It is important for young people to have the opportunity to discuss challenges and exchange information with their peers.
引用
收藏
页码:689 / 696
页数:8
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