Promoting the Well Being of Caregivers Via Telehealth

Launched by PURDUE UNIVERSITY · Aug 11, 2023

Keywords

ClinConnect Summary

This clinical trial, titled "Promoting the Well Being of Caregivers Via Telehealth," aims to find out which types of online support programs work best for caregivers of children with rare neurogenetic conditions. The researchers want to learn how to match caregivers with the right support based on their individual needs and characteristics, such as their mental health and lifestyle. They are also exploring whether having someone who has been through similar experiences (peer-to-peer coaching) can help improve caregivers' experiences during these support programs.

To participate, caregivers need to be legal guardians of a child aged 2 to 35 with a recognized genetic condition that affects the brain and typically causes significant intellectual disabilities. Participants will engage in a 12-week treatment program that may include various types of therapies and resources, while sharing their experiences through questionnaires before, during, and after the program. Some may initially be placed on a waitlist before receiving support. The trial is currently recruiting participants across the United States, and caregivers must be fluent in English and seeking help for their mental health or caregiving challenges.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• • Caregiver and legal guardian of child age 2-35 with neurogenetic condition
• • Child's syndrome must (1) have an established genetic cause, (2) affect the brain, resulting in moderate to severe intellectual disability in the majority of patients
• • Reside in US
• • Fluent in English (spoken and written)
• • Seeking support for caregiver mental health/well-being and/or caregiving needs
• Exclusion Criteria:
• • Serious mental illness or active addiction that would be inadequately addressed through dosage of treatments
• • Actively in treatment that would be redundant with those offered in the protocol
• • Child's syndrome is not commonly associated with (1) life expectancy less than 35 years or (2) deterioration of previously gained skills.
• • Additional treatment-specific inclusion criteria are embedded in the experimental algorithm that will be adjusted through Aim 1.