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To Share or Not To Share: Navigating Disclosure and Stigma Among Family Caregivers of Autistic Young Adults_Group Intervention

28 september 2026 uppdaterad av: University of Wisconsin, Madison

This study is a caregiver support program for family caregivers of autistic young adults (ages 18 to 26) as their family members navigate young adulthood. The program includes six 60-minute virtual sessions focused on making sense of caregiving roles during young adulthood, reflecting on everyday family experiences, supporting decision-making within families, deciding when and how to share experiences with others, and thinking about the future.

Studieöversikt

Status

Rekrytering

Betingelser

Intervention / Behandling

Detaljerad beskrivning

This program has three components:

  1. program participation, which includes six virtual sessions and one optional celebration session
  2. eight surveys, including one pre-program survey, one post-program survey, and six post-session surveys to collect participants feedback on each session; and
  3. one optional one-on-one interview.

For the six sessions, this program utilizes a peer-facilitated model, recognizing the unique expertise that comes from lived experience. Some aspects of navigating transition can only be fully understood and effectively communicated by fellow family caregivers, rather than by professionals.

Attendees are encouraged to bring their broader life experiences, including those unrelated to caregiving, when they see these experiences as central to who they are. The program welcomes participants as whole people, honoring both their caregiving role and the parts of their lives that extend beyond it.

Session content and topics are built from a series of interviews with family caregivers. The program not only covers what was openly discussed in those interviews but also explores what was less visible, what may have been unspoken, hidden, or missing from the conversations.

Studietyp

Interventionell

Inskrivning (Beräknad)

50

Fas

  • Inte tillämpbar

Kontakter och platser

Det här avsnittet innehåller kontaktuppgifter för dem som genomför studien och information om var denna studie genomförs.

Studiekontakt

Studieorter

  • Förenta staterna
    • Wisconsin
      • Madison, Wisconsin, Förenta staterna, 53705
        • Rekrytering
        • University of Wisconsin

Deltagandekriterier

Forskare letar efter personer som passar en viss beskrivning, så kallade behörighetskriterier. Några exempel på dessa kriterier är en persons allmänna hälsotillstånd eller tidigare behandlingar.

Urvalskriterier

Åldrar som är berättigade till studier

  • Barn
  • Vuxen
  • Äldre vuxen

Tar emot friska volontärer

Nej

Kön som är behöriga för studier

Allt

Beskrivning

Inclusion Criteria:

  • Has a family member aged 18-26 who has received an autism-related diagnosis from a healthcare professional
  • Must be a primary caregiver for this family member
  • Must be able to speak, understand, and read English well
  • Participants will be able to provide consent themselves.

Exclusion Criteria:

  • Lack of proficiency in English
  • Not a primary caregiver for a family member with autism aged 18-26
  • Individuals requiring a guardian to provide consent will be excluded

Studieplan

Det här avsnittet ger detaljer om studieplanen, inklusive hur studien är utformad och vad studien mäter.

Hur är studien utformad?

Designdetaljer

  • Primärt syfte: Stödjande vård
  • Tilldelning: N/A
  • Interventionsmodell: Enskild gruppuppgift
  • Maskning: Ingen (Open Label)

Vapen och interventioner

Deltagargrupp / Arm
Intervention / Behandling
Experimentell: Family Caregivers

Family Caregivers of Autistic Young Adults
Övrig: Group Intervention

Six 60-min virtual sessions Surveys before and after program intervention Optional post-intervention interview

Andra namn:
  • Anchors and Sails

Vad mäter studien?

Primära resultatmått

Resultatmått
Åtgärdsbeskrivning
Tidsram
Devaluation of Consumer Families (DCFS) Scale
Tidsram: baseline (pre-intervention) and 6 weeks (post-intervention)

9-items scored on a 4 point likert scale from 1 (strongly disagree) to 4 (strongly agree). Total range of scores is 9-36 with higher scores indicating higher devaluation of the family.
baseline (pre-intervention) and 6 weeks (post-intervention)
Self-Compassion Scale Score
Tidsram: baseline (pre-intervention) and 6 weeks (post-intervention)

Self-Compassion Scale (26-item), scored from 26 to 130, with higher scores indicating greater self-compassion.
baseline (pre-intervention) and 6 weeks (post-intervention)
Caregiving Appraisal Scale Score: Agreement
Tidsram: baseline (pre-intervention) and 6 weeks (post-intervention)

Caregiving Appraisal Scale (6-item) scored from 6-30 where higher scores indicate higher appraisal.
baseline (pre-intervention) and 6 weeks (post-intervention)
Caregiving Appraisal Scale Score: Frequency
Tidsram: baseline (pre-intervention) and 6 weeks (post-intervention)

Caregiving Appraisal Scale (23-item) scored from 23-115 where higher scores indicate more frequency of appraisal.
baseline (pre-intervention) and 6 weeks (post-intervention)

Sekundära resultatmått

Resultatmått
Åtgärdsbeskrivning
Tidsram
Family Empowerment Scale Score
Tidsram: baseline (pre-intervention) and 6 weeks (post-intervention)

Family Empowerment Scale (12-item) scored from 12-60 with higher scores meaning more empowered.
baseline (pre-intervention) and 6 weeks (post-intervention)
State Hope Scale Score
Tidsram: baseline (pre-intervention) and 6 weeks (post-intervention)

State Hope Scale (6-item) scored from 6-48 where higher scores indicate more hope
baseline (pre-intervention) and 6 weeks (post-intervention)
Caregiving Confidence Scale (CSES-8) Score
Tidsram: baseline (pre-intervention) and 6 weeks (post-intervention)

CSES-8 scored from 1-10 with higher scores meaning more confidence
baseline (pre-intervention) and 6 weeks (post-intervention)
Affiliate Stigma Scale Score
Tidsram: baseline (pre-intervention) and 6 weeks (post-intervention)

Affiliate Stigma Scale (22-item) scored from 22-88 where higher scores indicate increased stigma
baseline (pre-intervention) and 6 weeks (post-intervention)
Caregiving Flexibility Score
Tidsram: baseline (pre-intervention) and 6 weeks (post-intervention)

Caregiving flexibility score (18-item) scored from 18-72 where higher scores indicate increased flexibility
baseline (pre-intervention) and 6 weeks (post-intervention)
Feeling of Loneliness Score
Tidsram: baseline (pre-intervention) and 6 weeks (post-intervention)

Feeling of Loneliness (3-item) scored from 3-9 where higher scores indicate increased loneliness
baseline (pre-intervention) and 6 weeks (post-intervention)
Autonomy Support Scale Score
Tidsram: baseline (pre-intervention) and 6 weeks (post-intervention)

Autonomy Support Scale (5-item) scored from 5-20 where higher scores indicate more autonomy
baseline (pre-intervention) and 6 weeks (post-intervention)
Emotional Support Scale Score
Tidsram: baseline (pre-intervention) and 6 weeks (post-intervention)

Emotional Support Scale (6-item) scored from 6-30 where higher scores indicate increased emotional support
baseline (pre-intervention) and 6 weeks (post-intervention)

Samarbetspartners och utredare

Det är här du hittar personer och organisationer som är involverade i denna studie.

Sponsor

University of Wisconsin, Madison

Utredare

  • Huvudutredare: Sang Qin, PhD, University of Wisconsin, Madison

Studieavstämningsdatum

Dessa datum spårar framstegen för inlämningar av studieposter och sammanfattande resultat till ClinicalTrials.gov. Studieposter och rapporterade resultat granskas av National Library of Medicine (NLM) för att säkerställa att de uppfyller specifika kvalitetskontrollstandarder innan de publiceras på den offentliga webbplatsen.

Studera stora datum

Studiestart (Faktisk)

17 september 2026

Primärt slutförande (Beräknad)

1 juni 2027

Avslutad studie (Beräknad)

1 juni 2027

Studieregistreringsdatum

Först inskickad

28 september 2026

Först inskickad som uppfyllde QC-kriterierna

28 september 2026

Första postat (Faktisk)

5 oktober 2026

Uppdateringar av studier

Senaste uppdatering publicerad (Faktisk)

5 oktober 2026

Senaste inskickade uppdateringen som uppfyllde QC-kriterierna

28 september 2026

Senast verifierad

1 september 2026

Mer information

Termer relaterade till denna studie

Nyckelord

Ytterligare relevanta MeSH-villkor

Andra studie-ID-nummer

  • 2026-1026
  • Protocol Version CP002 (Annan identifierare: UW Madison)
  • SOE | Rehab Psy & Sp Ed Ops (Annan identifierare: UW Madison)

Plan för individuella deltagardata (IPD)

Planerar du att dela individuella deltagardata (IPD)?

NEJ

Läkemedels- och apparatinformation, studiedokument

Studerar en amerikansk FDA-reglerad läkemedelsprodukt

Nej

Studerar en amerikansk FDA-reglerad produktprodukt

Nej

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