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.
研究概览
详细说明
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.
研究类型
注册 (估计的)
阶段
- 不适用
联系人和位置
学习联系方式
- 姓名：Sang Qin, PhD
- 邮箱：sqin38@wisc.edu
学习地点
-
-
Wisconsin
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Madison、Wisconsin、美国、53705
- 招聘中
- University of Wisconsin
-
-
参与标准
资格标准
适合学习的年龄
- 孩子
- 成人
- 年长者
接受健康志愿者
有资格学习的性别
描述
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
学习计划
研究是如何设计的？
设计细节
- 主要用途：支持治疗
- 分配：不适用
- 介入模型：单组作业
- 屏蔽：无（打开标签）
武器和干预
参与者组/臂 |
干预/治疗 |
|---|---|
|
实验性的：Family Caregivers
Family Caregivers of Autistic Young Adults |
Six 60-min virtual sessions Surveys before and after program intervention Optional post-intervention interview
其他名称：
|
研究衡量的是什么？
主要结果指标
结果测量 |
措施说明 |
大体时间 |
|---|---|---|
|
Devaluation of Consumer Families (DCFS) Scale
大体时间：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
大体时间：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
大体时间：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
大体时间：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)
|
次要结果测量
结果测量 |
措施说明 |
大体时间 |
|---|---|---|
|
Family Empowerment Scale Score
大体时间：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
大体时间：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
大体时间：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
大体时间：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
大体时间：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
大体时间：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
大体时间：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
大体时间：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)
|
合作者和调查者
调查人员
- 首席研究员：Sang Qin, PhD、University of Wisconsin, Madison
研究记录日期
研究主要日期
学习开始 (实际的)
初级完成 (估计的)
研究完成 (估计的)
研究注册日期
首次提交
首先提交符合 QC 标准的
首次发布 (实际的)
研究记录更新
最后更新发布 (实际的)
上次提交的符合 QC 标准的更新
最后验证
更多信息
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