NCT07856927 · University of Wisconsin, Madison
To Share or Not To Share: Navigating Disclosure and Stigma Among Family Caregivers of Autistic Young Adults_Group Intervention
What this study is about
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.
View original scientific description
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.
Interventions
OTHER
Group Intervention
Six 60-min virtual sessions Surveys before and after program intervention Optional post-intervention interview
Primary outcome measures
Devaluation of Consumer Families (DCFS) Scale
Time frame: 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.
Self-Compassion Scale Score
Time frame: 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.
Caregiving Appraisal Scale Score: Agreement
Time frame: baseline (pre-intervention) and 6 weeks (post-intervention)
Caregiving Appraisal Scale (6-item) scored from 6-30 where higher scores indicate higher appraisal.
Caregiving Appraisal Scale Score: Frequency
Time frame: 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.
Who can participate
This study lists these criteria on ClinicalTrials.gov. A study coordinator reviews eligibility during screening — this page does not determine whether you qualify.
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
Where
- Madison, Wisconsin
Related conditions & keywords
Frequently asked questions
What is a clinical trial?
A clinical trial is a research study that tests new medical treatments, drugs, devices, or procedures to determine their safety and effectiveness. Trials are carefully designed and monitored to protect participants while advancing medical knowledge.
Is it safe to participate?
Clinical trials follow strict safety guidelines and ethical standards. Trials must be reviewed and approved, and participants are closely monitored by medical professionals throughout the study. You can withdraw at any time if you choose.
Will I be compensated?
Many clinical trials offer compensation for your time, travel expenses, and inconvenience. The specific compensation varies by study and will be discussed during the screening process. All study-related medical care is typically provided at no cost to participants.
Will I receive a placebo instead of treatment?
When effective treatment exists, participants typically receive either the standard treatment plus the study intervention, or the standard treatment plus placebo. You would not be denied effective care. Placebos are primarily used when no proven treatment is available, or in addition to standard care. Your trial consent form will clearly explain what treatments you may receive.
Can I leave a trial if I change my mind?
Absolutely. Participation in clinical trials is completely voluntary. You have the right to withdraw from the study at any time, for any reason, without penalty or loss of benefits to which you are otherwise entitled.
How long does a clinical trial last?
Trial duration varies widely depending on the study design and purpose. Some trials last just a few weeks, while others may continue for months or years. The study coordinator will provide specific timeline information during your screening call.
Data: ClinicalTrials.gov · synced Oct 5, 2026 · Source of record for eligibility and locations