A Longitudinal Mixed-Methods Characterization of Family Support from Adolescence to Young Adulthood in Autism and Other Developmental Disabilities
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| Title: | A Longitudinal Mixed-Methods Characterization of Family Support from Adolescence to Young Adulthood in Autism and Other Developmental Disabilities |
|---|---|
| Language: | English |
| Authors: | Hillary K. Schiltz (ORCID |
| Source: | Journal of Autism and Developmental Disorders. 2024 54(9):3225-3241. |
| Availability: | Springer. Available from: Springer Nature. One New York Plaza, Suite 4600, New York, NY 10004. Tel: 800-777-4643; Tel: 212-460-1500; Fax: 212-460-1700; e-mail: customerservice@springernature.com; Web site: https://link.springer.com/ |
| Peer Reviewed: | Y |
| Page Count: | 17 |
| Publication Date: | 2024 |
| Sponsoring Agency: | Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) (DHHS/NIH) National Institute of Mental Health (NIMH) (DHHS/NIH) |
| Contract Number: | R01HD081199 R01MH081873 |
| Document Type: | Journal Articles Reports - Research |
| Descriptors: | Family Relationship, Adolescents, Young Adults, Autism Spectrum Disorders, Developmental Disabilities, Caregivers, Social Support Groups, Change, Time, Family Role |
| DOI: | 10.1007/s10803-023-06070-y |
| ISSN: | 0162-3257 1573-3432 |
| Abstract: | Although caregiving responsibilities and need for support persist and evolve across the life course in families with autistic youth or youth with other developmental disabilities (DDs), little is known about support during their child's adulthood years. Therefore, the present study used a mixed-methods approach to examine change and stability in formal and informal family support across the transition to adulthood. Caregivers of 126 individuals with autism or DDs completed a modified version of the Family Support Scale, including open-ended questions, at five time points from adolescence (age 16) into young adulthood (age 22). Caregivers reported that informal support from family members was the most frequently used, helpful, and valued source of support with relative stability across time. In contrast, the reported helpfulness, use, and value of formal support (e.g., professionals, schools) for caregivers declined over time. Qualitative content analyses revealed characteristics of highly valued support included support type (e.g., instrumental or emotional) and features of the support source (e.g., their understanding). There was a shift to valuing emotional support more than instrumental support over time, especially for caregivers of less able adults. Partnership and dependability emerged as highly valued features of the support source. These findings fit within a social convoy perspective and likely reflect the "service cliff" experienced by autistic individuals or people with DDs and their families. As social networks shrink over time and formal services are less readily available in adulthood, remaining sources of support, particularly from family members, become increasingly important. |
| Abstractor: | As Provided |
| Entry Date: | 2024 |
| Accession Number: | EJ1437555 |
| Database: | ERIC |
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