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.
調査の概要
詳細な説明
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.
研究の種類
入学 (推定)
段階
- 適用できない
連絡先と場所
研究連絡先
- 名前：Sang Qin, PhD
- メール：sqin38@wisc.edu
研究場所
-
-
Wisconsin
-
Madison、Wisconsin、アメリカ、53705
- 募集
- University of Wisconsin
-
-
参加基準
適格基準
就学可能な年齢
- 子
- 大人
- 高齢者
健康ボランティアの受け入れ
受講資格のある性別
説明
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
研究計画
研究はどのように設計されていますか？
デザインの詳細
- 主な目的：支持療法
- 割り当て：なし
- 介入モデル：単一グループの割り当て
- マスキング：なし（オープンラベル）
武器と介入
参加者グループ / アーム |
介入・治療 |
|---|---|
|
実験的：Family Caregivers
Family Caregivers of Autistic Young Adults |
Six 60-min virtual sessions Surveys before and after program intervention Optional post-intervention interview
他の名前：
|
この研究は何を測定していますか？
主要な結果の測定
結果測定 |
メジャーの説明 |
時間枠 |
|---|---|---|
|
Devaluation of Consumer Families (DCFS) Scale
時間枠：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
時間枠：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
時間枠：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
時間枠：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)
|
二次結果の測定
結果測定 |
メジャーの説明 |
時間枠 |
|---|---|---|
|
Family Empowerment Scale Score
時間枠：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
時間枠：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
時間枠：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
時間枠：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
時間枠：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
時間枠：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
時間枠：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
時間枠：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)
|
協力者と研究者
捜査官
- 主任研究者：Sang Qin, PhD、University of Wisconsin, Madison
研究記録日
主要日程の研究
研究開始 (実際)
一次修了 (推定)
研究の完了 (推定)
試験登録日
最初に提出
QC基準を満たした最初の提出物
最初の投稿 (実際)
学習記録の更新
投稿された最後の更新 (実際)
QC基準を満たした最後の更新が送信されました
最終確認日
詳しくは
本研究に関する用語
追加の関連 MeSH 用語
その他の研究ID番号
- 2026-1026
- Protocol Version CP002 (その他の識別子：UW Madison)
- SOE | Rehab Psy & Sp Ed Ops (その他の識別子：UW Madison)
個々の参加者データ (IPD) の計画
個々の参加者データ (IPD) を共有する予定はありますか?
医薬品およびデバイス情報、研究文書
米国FDA規制医薬品の研究
米国FDA規制機器製品の研究
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