Families challenged by and accommodating to the adolescent years.
Families keep routines intact during the teen years by splitting family time, shielding some members, and aggressively coordinating disjointed services.
01Research in Context
What this study did
Researchers talked with families raising teens with severe intellectual or developmental disabilities.
They asked how life changes when the child hits adolescence and what tricks families use to cope.
What they found
Parents said the teen years bring two big headaches: shifting family roles and patchy services.
To stay afloat they split family time, shield some siblings, and chase every agency for help.
How this fits with other research
Hoyle et al. (2022) zooms in on one hot spot—sexual development—showing parents feel lost there too.
Tafolla et al. (2025) tracks the same families later and finds respite is steadier only when the youth talks little, filling a gap the 2006 paper spotted.
Gur et al. (2020) surveys caregivers further down the road and shows parent stress and social support keep sliding, proving the 2006 worries were spot on.
Why it matters
If you write transition plans, expect families to juggle roles and service gaps at once. Offer sibling support, rehearse upcoming changes with parents, and lock in respite early for youth with limited speech—those moves cut the chaos the 2006 families warned about.
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02At a glance
03Original abstract
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.
Journal of intellectual disability research : JIDR, 2006 · doi:10.1111/j.1365-2788.2006.00925.x