Promoting the Well Being of Caregivers Via Telehealth

Description

The goal of this clinical trial is to learn which types of telehealth-based treatments best fit the needs of caregivers of people with rare neurogenetic conditions. The main questions it plans to answer are: * Which telehealth support programs best meet the needs of rare disorder caregivers? * How can individuals be matched to support programs that are right for them? What aspects of an individual (e.g., demographics, mental health symptoms, family characteristics, lifestyle) predict whether treatment will be a good fit? * Does peer-to-peer coaching help improve patients' experiences during telehealth treatment? Participants will be asked to complete a 12-week treatment program, which may include self-guided resources, individual therapies, group therapies, and/or peer-to-peer coaching. Before, during, and after treatment, participants will complete questionnaires to help researchers understand their experiences, symptoms, and impressions of their support program. Questionnaires will include both standard forms (administered up to 5 times throughout the study) and brief "snapshot surveys" that participants complete on their smartphones up to 3 times per day. Some participants will be assigned to a waitlist control, which means that they will provide data while they are not yet completing a support program. These participants will be assigned to a support program in the next treatment phase.

Conditions

Caregivers, Parents

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Study Overview

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Study Details

Study overview

The goal of this clinical trial is to learn which types of telehealth-based treatments best fit the needs of caregivers of people with rare neurogenetic conditions. The main questions it plans to answer are: * Which telehealth support programs best meet the needs of rare disorder caregivers? * How can individuals be matched to support programs that are right for them? What aspects of an individual (e.g., demographics, mental health symptoms, family characteristics, lifestyle) predict whether treatment will be a good fit? * Does peer-to-peer coaching help improve patients' experiences during telehealth treatment? Participants will be asked to complete a 12-week treatment program, which may include self-guided resources, individual therapies, group therapies, and/or peer-to-peer coaching. Before, during, and after treatment, participants will complete questionnaires to help researchers understand their experiences, symptoms, and impressions of their support program. Questionnaires will include both standard forms (administered up to 5 times throughout the study) and brief "snapshot surveys" that participants complete on their smartphones up to 3 times per day. Some participants will be assigned to a waitlist control, which means that they will provide data while they are not yet completing a support program. These participants will be assigned to a support program in the next treatment phase.

Optimizing a Personalized Health Approach for Virtually Treating High-risk Caregivers During COVID-19 and Beyond

Promoting the Well Being of Caregivers Via Telehealth

Condition
Caregivers
Intervention / Treatment

-

Contacts and Locations

West Lafayette

Purdue University, West Lafayette, Indiana, United States, 47907

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

For general information about clinical research, read Learn About Studies.

Eligibility 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
  • * 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.

Ages Eligible for Study

18 Years to 70 Years

Sexes Eligible for Study

ALL

Accepts Healthy Volunteers

Yes

Collaborators and Investigators

Purdue University,

Bridgette Kelleher, PhD, PRINCIPAL_INVESTIGATOR, Purdue University

Study Record Dates

2025-12-29