| Approved on: | 2026-10-02 |
| Brief purpose of the study: | This study aims to identify unmet needs among caregivers during their child’s transition to adulthood and to identify gaps in current caregiver interventions. Through focus groups and interviews, the study aims to explore the question, “How do stakeholder perspectives align regarding what an effective caregiver-focused intervention should address?” This discussion generates stakeholder-informed insights with three different perspectives: caregivers of adolescents and youth with neurodevelopmental conditions, adults with neurodevelopmental conditions, and clinicians. The findings from this qualitative research will inform the development of a new caregiver-focused intervention, with quality of life as the primary outcome. |
| Brief summary of what participants will be asked to do: | Each participant will undergo a screening phone call to verify eligibility; if eligible, they will participate in a secure Zoom call to provide informed consent. Participants will then complete a baseline and fill out a demographic form. They can choose to participate in a focus group or an individual interview, with the process following their preferred option. All participants will be invited to participate in a 60-minute member-checking video call. If a participant chooses to participate in member-checking call, the total time required will be 2 hours. If a participant decides not to join the member-checking call, the total required time will be 1 hour. |
| Basic eligibility criteria: | - Inclusion Criteria for caregivers: (1) caregiver, parent, or primary guardian of adolescent and young adult (13-22 year old) with neurodevelopmental conditions (e.g., Autism Spectrum Disorder, Intellectual and Developmental Disability, or Attention-Deficit/Hyperactivity Disorder); (2) age 18 or older; (3) constant and direct involvement in the life of adolescent and young adult with neurodevelopmental conditions; (4) able to communicate in back-and-forth conversations; (5) able to speak, read, and write English fluently; (6) stable internet connection for sessions.
- Inclusion for adults with neurodevelopmental conditions: (1) age 18 or older; (2) medical or educational diagnoses of Autism Spectrum Disorder, Intellectual and Developmental Disability, or Attention-Deficit/Hyperactivity Disorder; (3) able to communicate in back-and-forth conversations verbally or through augmentative and alternative communication; (5) able to speak, read, and write in English; (6) stable internet connection for sessions
- Inclusion criteria for clinicians: (1) minimum of a year working closely with caregivers and/or adolescent and youth with neurodevelopmental conditions; (2) minimum of 10 hours weekly working with this population; (3) holding an active license with the professional board, (4) able to communicate in back-and-forth conversations; (5) able to speak, read, and write in English; (6) stable internet connection for sessions. |
| Study contact for more information: | Please contact Eduarda Campos via email: eg348@missouri.edu |
| IRB Number: | 2136511 MU |
