Autism spectrum disorder Transition to adulthood Caregiver burden Service access Transition readiness Health care transition Autism spectrum disorder Adolescent Young adult Care coordination Social work Transition to adult care Caregiver burden Health services accessibility Patient navigation Continuity of care
Conditions
Interventions
Participants allocated to the intervention arm received structured clinical social work-led care coordination over 12 months. The model included transition needs assessment, individualized transition
Clinical social work-led care coordination,Usual Care
Sponsors
Department of Social Work, College of Social Sciences, Umm Al-Qura University
Eligibility
Sex/Gender
All
Age
14 Years to 21 Years
Inclusion criteria
Inclusion criteria: Dyads consisting of an autistic adolescent or young adult and a primary caregiver were eligible. Young people were eligible if they had a documented diagnosis of autism spectrum disorder based on multidisciplinary clinical records and specialist documentation consistent with routine DSM-5- or ICD-based practice; were aged 14 to 21 years; were approaching, undergoing, or had recently entered the transition from child- to adult-oriented services; and were receiving care from one of the participating service sites at the time of recruitment. Primary caregivers were eligible if they were the person most directly involved in the young person's appointments, care coordination, or service-related decision-making.
Exclusion criteria
Exclusion criteria: Dyads were excluded if the young person or caregiver could not complete study procedures in Arabic, if no caregiver with sufficient knowledge of the young person's service trajectory was available, or if the young person was fully disengaged from formal services and therefore could not be meaningfully followed over the study period.
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Service access Baseline, 6 months, and 12 months Service Access Composite Index,Caregiver burden Baseline, 6 months, and 12 months Arabic short version of the Burden Scale for Family Caregivers (BSFC-s),Transition readiness Baseline, 6 months, and 12 months Arabic parent version of the UNC TRxANSITION Index | — |
Secondary
| Measure | Time frame |
|---|---|
| Adult-service planning 12 months Initiation of adult-service planning based on caregiver report and documented records,Documented transition plan 12 months Presence of a documented transition plan based on caregiver report and documented records,Unmet service need 12 months Presence of at least one unmet service need based on caregiver report and documented records,Psychosocial or mental health support access 12 months Access to indicated psychosocial or mental health support based on caregiver report and documented records | — |
Countries
Saudi Arabia
Contacts
Public ContactSahar Muathen
Umm Al-Qura University
Outcome results
None listed