AutismNCT07856927
To Share or Not To Share: Navigating Disclosure and Stigma Among Family Caregivers of Autistic Young Adults_Group Intervention
A study testing Group Intervention in people with Autism, run by University of Wisconsin, Madison at 1 site in United States.
Trial summary
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… Read more about this study
- Who is it for?
- Any age
- Conditions the study is for
- Autism
- What is being tested?
- Group Intervention
- Could I receive a placebo?
- No, everyone receives an active treatment
- How many people
- 50 participants
- Where
- 1 siteUnited States
- Study dates
- 17 Sep 2026to Jun 2027
- Phase
- Interventional
- Are there results?
- Not yet: the study is under way
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages Any age
- All sexes
- No healthy volunteers
- Child, Adult, Older adult
Who may be able to join
- 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.
Who cannot join
- 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
Trial locations and contacts
1 site in 1 country. Contact the study team or a site near you to ask about taking part.
Sang Qin, PhD contact
United States1 site, 1 recruiting
- Recruiting
University of Wisconsin
Madison, Wisconsin, 53705
About this study
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.
Read the detailed description
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.
- Conditions
- Autism
- Being tested
- Group Intervention
- Keywords
- caregiver support, young adulthood, well-being
- Medical subject headings
- Autistic Disorder
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
Group InterventionOther
Also called Anchors and Sails
Six 60-min virtual sessions Surveys before and after program intervention Optional post-intervention interview
| Study group | Role | What they receive |
|---|---|---|
| Family Caregivers | Experimental | Family Caregivers of Autistic Young Adults Receives: Other: Group Intervention |
What is being measured
The primary outcome is the main question the study is designed to answer.
Devaluation of Consumer Families (DCFS) Scale
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.
Measured: baseline (pre-intervention) and 6 weeks (post-intervention)
Self-Compassion Scale Score
Self-Compassion Scale (26-item), scored from 26 to 130, with higher scores indicating greater self-compassion.
Measured: baseline (pre-intervention) and 6 weeks (post-intervention)
Caregiving Appraisal Scale Score: Agreement
Caregiving Appraisal Scale (6-item) scored from 6-30 where higher scores indicate higher appraisal.
Measured: baseline (pre-intervention) and 6 weeks (post-intervention)
Caregiving Appraisal Scale Score: Frequency
Caregiving Appraisal Scale (23-item) scored from 23-115 where higher scores indicate more frequency of appraisal.
Measured: baseline (pre-intervention) and 6 weeks (post-intervention)
Secondary outcomes (8)
Family Empowerment Scale Score
Family Empowerment Scale (12-item) scored from 12-60 with higher scores meaning more empowered.
Measured: baseline (pre-intervention) and 6 weeks (post-intervention)
State Hope Scale Score
State Hope Scale (6-item) scored from 6-48 where higher scores indicate more hope
Measured: baseline (pre-intervention) and 6 weeks (post-intervention)
Caregiving Confidence Scale (CSES-8) Score
CSES-8 scored from 1-10 with higher scores meaning more confidence
Measured: baseline (pre-intervention) and 6 weeks (post-intervention)
Affiliate Stigma Scale Score
Affiliate Stigma Scale (22-item) scored from 22-88 where higher scores indicate increased stigma
Measured: baseline (pre-intervention) and 6 weeks (post-intervention)
Caregiving Flexibility Score
Caregiving flexibility score (18-item) scored from 18-72 where higher scores indicate increased flexibility
Measured: baseline (pre-intervention) and 6 weeks (post-intervention)
Feeling of Loneliness Score
Feeling of Loneliness (3-item) scored from 3-9 where higher scores indicate increased loneliness
Measured: baseline (pre-intervention) and 6 weeks (post-intervention)
Autonomy Support Scale Score
Autonomy Support Scale (5-item) scored from 5-20 where higher scores indicate more autonomy
Measured: baseline (pre-intervention) and 6 weeks (post-intervention)
Emotional Support Scale Score
Emotional Support Scale (6-item) scored from 6-30 where higher scores indicate increased emotional support
Measured: baseline (pre-intervention) and 6 weeks (post-intervention)
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted5 Oct 2026
- Study start17 Sep 2026
- Primary completionJun 2027 (estimated)
- Study completionJun 2027 (estimated)
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Other trials for AutismStudies of the same condition, open and under way.
- More trials run by University of Wisconsin, MadisonThe sponsor's other registered studies.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Interventional
- Phase
- Phase N/A
- Primary purpose
- Supportive care
- Allocation
- Not applicable
- Intervention model
- Single group
- Masking
- None (open label)
- Enrolment
- 50 participants (estimated)
Sponsor and investigators
- Lead sponsor
- University of Wisconsin, Madison
- Sponsor type
- University, hospital or other
- Responsible party
- Sponsor
- Investigators
- Sang Qin, PhD, Principal investigator, University of Wisconsin, Madison
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT07856927
- Sponsor's protocol ID
- 2026-1026
- Other IDs
- Protocol Version CP002, SOE | Rehab Psy & Sp Ed Ops
- Status last verified
- Sep 2026
- First submitted
- 28 Sep 2026
- Last updated
- 5 Oct 2026
- Results posted
- No
- FDA-regulated drug
- No
- FDA-regulated device
- No
- Individual data sharing
- No
Study at a glance
From the registry record, last updated by the sponsor on 5 Oct 2026. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- To Share or Not To Share: Navigating Disclosure and Stigma Among Family Caregivers of Autistic Young Adults_Group Intervention
- ClinicalTrials.gov ID
- NCT07856927
- Acronym / sponsor ID
- 2026-1026
- Conditions
- Autism
- Keywords
- caregiver support, young adulthood, well-being
- Study type
- Interventional
- Recruitment status
- Recruiting
- Enrolment
- 50 participants (estimated)
- Lead sponsor
- University of Wisconsin, MadisonUniversity, hospital or other
- Study start
- 17 Sep 2026 (actual)
- Primary completion
- Jun 2027 (estimated)
- Study completion
- Jun 2027 (estimated)
- First posted
- 5 Oct 2026 (actual)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
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.
Detailed description
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.
Study design
- Primary purpose
- Supportive care
- Allocation
- Not applicable
- Intervention model
- Single group
- Masking
- None (open label)
- Number of arms
- 1
| Arm | Type | Receives |
|---|---|---|
| Family Caregivers | Experimental | Other: Group InterventionFamily Caregivers of Autistic Young Adults |
Who may qualify
- Sex
- All
- Healthy volunteers
- Not accepted
- Age groups
- Child, Adult, Older adult
Key inclusion criteria (4 listed)
- 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.
Key exclusion criteria (3 listed)
- 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
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Interventions
| Intervention | Type | Arms |
|---|---|---|
| Group InterventionAlso: Anchors and SailsSix 60-min virtual sessions Surveys before and after program intervention Optional post-intervention interview | Other | Family Caregivers |
Primary outcome
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.
8 secondary outcomes
Family Empowerment Scale Score
Time frame: baseline (pre-intervention) and 6 weeks (post-intervention)
State Hope Scale Score
Time frame: baseline (pre-intervention) and 6 weeks (post-intervention)
Caregiving Confidence Scale (CSES-8) Score
Time frame: baseline (pre-intervention) and 6 weeks (post-intervention)
Affiliate Stigma Scale Score
Time frame: baseline (pre-intervention) and 6 weeks (post-intervention)
Caregiving Flexibility Score
Time frame: baseline (pre-intervention) and 6 weeks (post-intervention)
Feeling of Loneliness Score
Time frame: baseline (pre-intervention) and 6 weeks (post-intervention)
Autonomy Support Scale Score
Time frame: baseline (pre-intervention) and 6 weeks (post-intervention)
Emotional Support Scale Score
Time frame: baseline (pre-intervention) and 6 weeks (post-intervention)
Results and safety
This study is still under way. Results are not available in the source record yet.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 5 Oct 2026.
- Individual participant dataSharing planned: No
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Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part.
Sang Qin, PhD contact
Sang Qin, PhD principal investigator
University of Wisconsin, Madison
1 site in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
A study testing Group Intervention in people with Autism, run by University of Wisconsin, Madison at 1 site in United States.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 4 inclusion and 3 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: looking for participants now, as of the sponsor's last update on 5 Oct 2026. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 1 site in United States. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
This study is still under way. Results are not available in the source record yet.
How can a doctor refer a patient or contact the research team?
Contact Sang Qin, PhD (sqin38@wisc.edu), or a site near the patient. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
Devaluation of Consumer Families (DCFS) Scale (time frame: baseline (pre-intervention) and 6 weeks (post-intervention)). The study lists 4 primary outcomes in all. It is what the study was designed to measure, not a finding.
Where can I read the original study information?
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 5 Oct 2026.