Background
The transition to adulthood is a time of information needs for youth living with cerebral palsy (CP) and their parents. Access to information and being provided information may assist youth and their parents in making informed decisions. Youth with CP and parents of youth living with CP have reported lack of information as a challenge during the transition to adulthood. Little is known about the information needs of youth with CP and parents during the transition to adulthood from their perspective.
Objectives and Methods
The objective of this thesis was to explore the information needs of youth with CP and parents during the transition to adulthood. A scoping review was conducted seeking to understand what was known in the transition literature about the information needs of youth with CP and parents (Chapter 2). To clarify the methodological framework of this dissertation the application of interpretive description (ID) to a case study example within childhood disability research was explored (Chapter 3). The information needs during transition in a sample of young adults living with CP were explored using ID (Chapter 4). The information needs of parents of youth with CP currently in the transition to adulthood were then explored, using ID because it was learned in the study of adults living with CP that their parents initiated information seeking or had information needs of their own during transition (Chapter 5).
Findings
Primary findings from this dissertation include the recognition, from both the scoping review and the two studies, that both youth living with CP and parents of youth living with CP in the transition to adulthood have information needs during the transition to adulthood. More specifically, both youth and parents are seeking to receive information related to goals in adult life, such as employment, postsecondary education, leaving the family home and relationships. Youth prefer to receive their information from peers living with CP. Parents prefer to receive information from peers, but some also desire a direct connection with service providers. Other parents recommend adults living with CP as an information source. Youth and parents agree that information should be delivered in individualized tailored ways. In addition to rehabilitation professionals, youth and parents highlighted the need for information from educators and other community providers.
Implications for Clinical Practice
Rehabilitation professionals have an important role in helping to provide tailored information. Rehabilitation professionals can initiate conversations about the transition to adulthood around the beginning of high school that focus on improving the self-management of youth of their own transitional journey. In addition to having conversations with clients, rehabilitation professionals should also connect clients with community supports. / Thesis / Doctor of Philosophy (PhD)
| Identifer | oai:union.ndltd.org:mcmaster.ca/oai:macsphere.mcmaster.ca:11375/24677 |
| Date | 12 August 2019 |
| Creators | Freeman, Matt |
| Contributors | Gorter, Jan Willem, Rehabilitation Science |
| Source Sets | McMaster University |
| Language | English |
| Detected Language | English |
| Type | Thesis |
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