Siblings FORWARD: Development of a New Program to Engage Siblings of Autistic Adults in Future Planning.
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...
| Publicado en: | Journal of Autism & Developmental Disorders Vol. 55; no. 1; pp. 76 - 94 |
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| Autores principales: | , , , , , |
| Formato: | research tables/charts Journal Article |
| Publicado: |
Springer Nature
Jan2025
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=182844500&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 182844500 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 01623257 AUT jtl: Journal of Autism & Developmental Disorders issn: 01623257 maglogo: N pubinfo: dt: Jan2025 vid: 55 iid: 1 pid: 237 pub: Springer Nature place: New York, New York artinfo: ui: 182844500 174351858 182844500 182844500 10.1007/s10803-023-06178-1 182844500 ppf: 76 ppct: 18 formats: fmt: – @attributes: type: T – @attributes: type: P tig: atl: Siblings FORWARD: Development of a New Program to Engage Siblings of Autistic Adults in Future Planning. aug: au: Long, Kristin A. LaRochelle, Jade Gordillo, Monica Pariseau, Emily M. DeCelle, Melissa G. Orsmond, Gael affil: https://ror.org/05qwgg493 Department of Psychological & Brain Sciences, Program in Clinical Psychology, Boston University, 900 Commonwealth Ave., Second Floor, Boston, MA, USA sug: subj: Autism Spectrum Disorder Psychosocial Factors Siblings Psychosocial Factors Program Development Family Psychosocial Factors Psychological Well-Being Accountability Persons with Disabilities Psychosocial Factors Human Funding Source Male Female Adult Middle Age Qualitative Studies Focus Groups Semi-Structured Interview Thematic Analysis Questionnaires Attitude of Health Personnel Telehealth Descriptive Statistics Adult: 19-44 years Middle Aged: 45-64 years Male Female ab: 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. pubtype: Academic Journal doctype: research tables/charts Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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