Siblings FORWARD: Development of a New Program to Engage Siblings of Autistic Adults in Future Planning.

Autor: Long KA; Department of Psychological & Brain Sciences, Program in Clinical Psychology, Boston University, 900 Commonwealth Ave., Second Floor, Boston, MA, USA. kalong@bu.edu., LaRochelle J; Department of Occupational Therapy, Boston University, Boston, MA, USA.; Newton Wellesley Hospital, Newton, MA, USA., Gordillo M; Department of Psychological & Brain Sciences, Program in Clinical Psychology, Boston University, 900 Commonwealth Ave., Second Floor, Boston, MA, USA.; Nemours Children's Health, Delaware, Wilmington, DE, USA., Pariseau EM; Department of Psychological & Brain Sciences, Program in Clinical Psychology, Boston University, 900 Commonwealth Ave., Second Floor, Boston, MA, USA.; Nemours Children's Health, Delaware, Wilmington, DE, USA., DeCelle MG; Department of Occupational Therapy, Boston University, Boston, MA, USA.; Boston Children's Hospital, Boston, MA, USA., Orsmond G; Department of Occupational Therapy, Boston University, Boston, MA, USA.
Jazyk: angličtina
Zdroj: Journal of autism and developmental disorders [J Autism Dev Disord] 2023 Dec 20. Date of Electronic Publication: 2023 Dec 20.
DOI: 10.1007/s10803-023-06178-1
Abstrakt: The adult service system does not adequately meet the needs of autistic adults, prompting families to continue their supportive roles. Siblings frequently assume these roles when parents are no longer able to do so, often without preparation or planning. We received feedback on the proposed Siblings FORWARD (Focusing on Relationships, Well-being, and Responsibility aheaD) program concept, which would involve 6-7 individualized sessions over ~ 3 months and would facilitate siblings' proactive future planning involvement with their autistic family member. Siblings FORWARD would bolster siblings' skills, knowledge, and self-efficacy to engage in future planning with their family members. We report on perceived need for a sibling program and feedback on the proposed program goals, content, and design. Adult siblings (n = 13), autistic adults (n = 6), and service providers (n = 17) participated in individual interviews or focus groups. Data were systematically coded and analyzed using directed content analysis. Siblings, autistic adults, and service providers expressed high enthusiasm for the Siblings FORWARD concept. Participants indicated that the combination of skill-building and education would promote continued, collaborative future planning that persists after the formal program ends. They had positive impressions of the program concept, goals, content, and design, including the telehealth delivery model. Siblings and autistic adults reported wanting to participate in Siblings FORWARD. This uniform, strong enthusiasm for the Siblings FORWARD concept warrants moving forward to examine preliminary acceptability and feasibility. Ultimately, greater sibling involvement in family future planning may improve autistic adults' functioning through improved continuity of care and support across adulthood.
(© 2023. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)
Databáze: MEDLINE
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