BACKGROUND: Informed by Ecocultural theory, this study explores the challenges that families caring for an adolescent with disability face and strategies they apply to sustain a meaningful family routine during the adolescent years. METHODS: In-depth Ecocultural interviews were conducted with 20 families caring for an adolescent (aged 10-21 years) with severe disabilities, including intellectual disability. Transcripts were analysed using a constant comparative approach. Two types of family level challenges were differentiated--internal and external factors impacting on daily family life. RESULTS: Two themes representing this distinction between internal and external family challenges are presented in detail. Across both younger adolescent (aged 10-14 years) and older adolescent (aged 16-20 years) groups, families were first challenged by changing family roles and relationships (an internal factor). In response, families used three strategies: dividing up family time, protecting some members from too much involvement and engaging others in family activities. Families were also challenged by service discontinuity (an external factor). Accommodation strategies included advocacy, coordinating multiple services and forfeiting a desired alternative. CONCLUSIONS: Family routine in the adolescent years is dynamic rather than static, simultaneously challenged by internal and external factors. Families use multiple strategies to accommodate these challenges, which are underpinned by their beliefs, values and resources. Professionals working with families caring for an adolescent with disability need to be aware of these in order to support families effectively to sustain a meaningful family routine during the adolescent years.
BACKGROUND: Informed by Ecocultural theory, this study explores the challenges that families caring for an adolescent with disability face and strategies they apply to sustain a meaningful family routine during the adolescent years. METHODS: In-depth Ecocultural interviews were conducted with 20 families caring for an adolescent (aged 10-21 years) with severe disabilities, including intellectual disability. Transcripts were analysed using a constant comparative approach. Two types of family level challenges were differentiated--internal and external factors impacting on daily family life. RESULTS: Two themes representing this distinction between internal and external family challenges are presented in detail. Across both younger adolescent (aged 10-14 years) and older adolescent (aged 16-20 years) groups, families were first challenged by changing family roles and relationships (an internal factor). In response, families used three strategies: dividing up family time, protecting some members from too much involvement and engaging others in family activities. Families were also challenged by service discontinuity (an external factor). Accommodation strategies included advocacy, coordinating multiple services and forfeiting a desired alternative. CONCLUSIONS: Family routine in the adolescent years is dynamic rather than static, simultaneously challenged by internal and external factors. Families use multiple strategies to accommodate these challenges, which are underpinned by their beliefs, values and resources. Professionals working with families caring for an adolescent with disability need to be aware of these in order to support families effectively to sustain a meaningful family routine during the adolescent years.