To Share or Not To Share: Navigating Disclosure and Stigma Among Family Caregivers of Autistic Young Adults_Group Intervention
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.
Přehled studie
Detailní popis
This program has three components:
- program participation, which includes six virtual sessions and one optional celebration session
- eight surveys, including one pre-program survey, one post-program survey, and six post-session surveys to collect participants feedback on each session; and
- 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.
Typ studie
Zápis (Odhadovaný)
Fáze
- Nelze použít
Kontakty a umístění
Studijní kontakt
- Jméno: Sang Qin, PhD
- E-mail: sqin38@wisc.edu
Studijní místa
-
-
Wisconsin
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Madison, Wisconsin, Spojené státy, 53705
- Nábor
- University of Wisconsin
-
-
Kritéria účasti
Kritéria způsobilosti
Věk způsobilý ke studiu
- Dítě
- Dospělý
- Starší dospělý
Přijímá zdravé dobrovolníky
Pohlaví způsobilá ke studiu
Popis
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
Studijní plán
Jak je studie koncipována?
Detaily designu
- Primární účel: Podpůrná péče
- Přidělení: N/A
- Intervenční model: Přiřazení jedné skupiny
- Maskování: Žádné (otevřený štítek)
Zbraně a zásahy
Skupina účastníků / Arm |
Intervence / Léčba |
|---|---|
|
Experimentální: Family Caregivers
Family Caregivers of Autistic Young Adults |
Six 60-min virtual sessions Surveys before and after program intervention Optional post-intervention interview
Ostatní jména:
|
Co je měření studie?
Primární výstupní opatření
Měření výsledku |
Popis opatření |
Časové okno |
|---|---|---|
|
Devaluation of Consumer Families (DCFS) Scale
Časové okno: 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
Časové okno: 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
Časové okno: 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
Časové okno: 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)
|
Sekundární výstupní opatření
Měření výsledku |
Popis opatření |
Časové okno |
|---|---|---|
|
Family Empowerment Scale Score
Časové okno: 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
Časové okno: 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
Časové okno: 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
Časové okno: 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
Časové okno: 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
Časové okno: 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
Časové okno: 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
Časové okno: 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)
|
Spolupracovníci a vyšetřovatelé
Sponzor
Vyšetřovatelé
- Vrchní vyšetřovatel: Sang Qin, PhD, University of Wisconsin, Madison
Termíny studijních záznamů
Hlavní termíny studia
Začátek studia (Aktuální)
Primární dokončení (Odhadovaný)
Dokončení studie (Odhadovaný)
Termíny zápisu do studia
První předloženo
První předloženo, které splnilo kritéria kontroly kvality
První zveřejněno (Aktuální)
Aktualizace studijních záznamů
Poslední zveřejněná aktualizace (Aktuální)
Odeslaná poslední aktualizace, která splnila kritéria kontroly kvality
Naposledy ověřeno
Více informací
Termíny související s touto studií
Klíčová slova
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