A qualitative study of the transition to adulthood for youth with physical disabilities.
Stewart DA, Law MC, Rosenbaum P, Willms DG.
School of Rehabilitation Science, CanChild Centre for Childhood Disability, McMaster University, Hamilton, Ontario, Canada. Phys Occup Ther Pediatr 2001;21(4):3-21
The purpose of this qualitative study was to explore the experiences, perceptions, and needs of youth with physical disabilities in transition from adolescence to adulthood. Purposeful sampling strategies were used to select 34 study participants who lived in three regions of south-central Ontario, Canada. Data collection methods were individual and focus group interviews, and were guided by a set of open-ended questions. An editing style of analysis sorted the text into codes for description and interpretation. Themes emerged about context, the transition process, needs, and services. Participants identified a poor fit between young persons with disabilities and the adult world they were entering. They recommended that services be focused on environmental supports to enable them to “build their own bridges” to the adult world. Community-based transition services need to be planned in collaboration with youth with disabilities and their parents. Concepts of person-environment fit and health promotion can be incorporated into services to enable young persons with disabilities to experience a smooth transition from adolescence to adulthood.
Duchenne muscular dystrophy–parental perceptions.
Bothwell JE, Dooley JM, Gordon KE, MacAuley A, Camfield PR, MacSween J.
The Division of Pediatric Neurology, IWK Health Centre and Dalhousie University, Halifax, Nova Scotia, Canada. Clin Pediatr (Phila) 2002 Mar;41(2):105-9
Quality of life and availability of services are important for boys with Duchenne muscular dystrophy (DMD) and their families. Families attending our neuromuscular clinic completed a questionnaire on parental perception regarding the importance of services, health issues, and quality of life issues both “now” and “in the future.” Eighty-nine percent of the families (31/35) completed questionnaires. Services and health issues related to prolonging ambulation were most important, especially for the parents of younger boys. Mental health issues such as social isolation, anger, and depression were very important, particularly for the families of older boys and were anticipated to be more important in the future. Pediatricians should be aware of both the immediate needs of families to meet the physical and emotional challenges of DMD and the increasing requirement to address the social needs of these patients and their families as the boys become older.
Needs assessment in a spina bifida program: a comparison of the perceptions by adolescents with spina bifida and their parents.
Buran CF, McDaniel AM, Brei TJ.
Riley Hospital for Children, 702 Barnhill Drive, Indianapolis, IN 46202, USA. firstname.lastname@example.org Clin Nurse Spec 2002 Sep;16(5):256-62
The primary purpose of this study was to describe and compare medical, psychosocial, and economic needs of adolescents and young adults with a neural tube defect and their parents. A secondary aim of the study was to establish the psychometric properties of a previously published needs assessment tool. Forty-nine adolescent and 59 parents receiving services from a comprehensive spina bifida program at a large children’s hospital completed a needs assessment survey designed to measure perceived needs for health and social services. The Needs Assessment Questionnaire includes 8 subscales (Accessibility/Transportation/Independence, Financial Concerns, Medical Resources, Communication/Acceptance of individuals with spina bifida, Family/Socialization, Education of others regarding spina bifida, School Services, and Vocational Training). Factors related to perceived needs and differences between adolescents and parents were explored. There was a significant difference ( <.05) between parents and adolescents in 6 of the 8 subscales. On the remaining 2 subscales, differences between parents and adolescents approached significance. In all areas of needs for services, parents were less satisfied with the delivery of services and reported that needs were not being met. A significant negative correlation between age of the adolescent and perceived needs related to Transportation/Independence ( = -0.35) and School Services ( = -0.31) was found. Parents with more than a high school education perceived significantly greater needs for Vocational Training than those with less education ( = -2.1, =.04). Identification of medical, psychosocial, and economic needs of adolescents with a neural tube defect and their families has implications for quality improvement and program development.