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.
연구 개요
상세 설명
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.
연구 유형
등록 (추정된)
단계
- 해당 없음
연락처 및 위치
연구 연락처
- 이름: Sang Qin, PhD
- 이메일: sqin38@wisc.edu
연구 장소
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Wisconsin
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Madison, Wisconsin, 미국, 53705
- 모병
- University of Wisconsin
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참여기준
자격 기준
공부할 수 있는 나이
- 어린이
- 성인
- 고령자
건강한 자원 봉사자를 받아들입니다
연구 대상 성별
설명
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
공부 계획
연구는 어떻게 설계됩니까?
디자인 세부사항
- 주 목적: 지지 요법
- 할당: 해당 없음
- 중재 모델: 단일 그룹 할당
- 마스킹: 없음(오픈 라벨)
무기와 개입
참가자 그룹 / 팔 |
개입 / 치료 |
|---|---|
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실험적: Family Caregivers
Family Caregivers of Autistic Young Adults |
Six 60-min virtual sessions Surveys before and after program intervention Optional post-intervention interview
다른 이름들:
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연구는 무엇을 측정합니까?
주요 결과 측정
결과 측정 |
측정값 설명 |
기간 |
|---|---|---|
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Devaluation of Consumer Families (DCFS) Scale
기간: baseline (pre-intervention) and 6 weeks (post-intervention)
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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)
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Self-Compassion Scale Score
기간: baseline (pre-intervention) and 6 weeks (post-intervention)
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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)
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Caregiving Appraisal Scale Score: Agreement
기간: baseline (pre-intervention) and 6 weeks (post-intervention)
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Caregiving Appraisal Scale (6-item) scored from 6-30 where higher scores indicate higher appraisal. |
baseline (pre-intervention) and 6 weeks (post-intervention)
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Caregiving Appraisal Scale Score: Frequency
기간: baseline (pre-intervention) and 6 weeks (post-intervention)
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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)
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2차 결과 측정
결과 측정 |
측정값 설명 |
기간 |
|---|---|---|
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Family Empowerment Scale Score
기간: baseline (pre-intervention) and 6 weeks (post-intervention)
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Family Empowerment Scale (12-item) scored from 12-60 with higher scores meaning more empowered. |
baseline (pre-intervention) and 6 weeks (post-intervention)
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State Hope Scale Score
기간: baseline (pre-intervention) and 6 weeks (post-intervention)
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State Hope Scale (6-item) scored from 6-48 where higher scores indicate more hope |
baseline (pre-intervention) and 6 weeks (post-intervention)
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Caregiving Confidence Scale (CSES-8) Score
기간: baseline (pre-intervention) and 6 weeks (post-intervention)
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CSES-8 scored from 1-10 with higher scores meaning more confidence |
baseline (pre-intervention) and 6 weeks (post-intervention)
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Affiliate Stigma Scale Score
기간: baseline (pre-intervention) and 6 weeks (post-intervention)
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Affiliate Stigma Scale (22-item) scored from 22-88 where higher scores indicate increased stigma |
baseline (pre-intervention) and 6 weeks (post-intervention)
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Caregiving Flexibility Score
기간: baseline (pre-intervention) and 6 weeks (post-intervention)
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Caregiving flexibility score (18-item) scored from 18-72 where higher scores indicate increased flexibility |
baseline (pre-intervention) and 6 weeks (post-intervention)
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Feeling of Loneliness Score
기간: baseline (pre-intervention) and 6 weeks (post-intervention)
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Feeling of Loneliness (3-item) scored from 3-9 where higher scores indicate increased loneliness |
baseline (pre-intervention) and 6 weeks (post-intervention)
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Autonomy Support Scale Score
기간: baseline (pre-intervention) and 6 weeks (post-intervention)
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Autonomy Support Scale (5-item) scored from 5-20 where higher scores indicate more autonomy |
baseline (pre-intervention) and 6 weeks (post-intervention)
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Emotional Support Scale Score
기간: 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)
|
공동 작업자 및 조사자
수사관
- 수석 연구원: Sang Qin, PhD, University of Wisconsin, Madison
연구 기록 날짜
연구 주요 날짜
연구 시작 (실제)
기본 완료 (추정된)
연구 완료 (추정된)
연구 등록 날짜
최초 제출
QC 기준을 충족하는 최초 제출
처음 게시됨 (실제)
연구 기록 업데이트
마지막 업데이트 게시됨 (실제)
QC 기준을 충족하는 마지막 업데이트 제출
마지막으로 확인됨
추가 정보
이 연구와 관련된 용어
추가 관련 MeSH 약관
기타 연구 ID 번호
- 2026-1026
- Protocol Version CP002 (기타 식별자: UW Madison)
- SOE | Rehab Psy & Sp Ed Ops (기타 식별자: UW Madison)
개별 참가자 데이터(IPD) 계획
개별 참가자 데이터(IPD)를 공유할 계획입니까?
약물 및 장치 정보, 연구 문서
미국 FDA 규제 의약품 연구
미국 FDA 규제 기기 제품 연구
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