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Acceptance and Commitment Therapy to Reduce Parenting Stress in Caregivers of Children With RASopathies A Pilot Study and Follow-up Randomized Trial
Led by National Cancer Institute (NCI) · Updated on 2026-02-19
70
Participants Needed
1
Research Sites
30 weeks
Total Duration
On this page
AI-Summary
What this Trial Is About
RASopathies are genetic conditions that affect childrens development, causing physical, cognitive, and behavioral challenges. This research aims to find out if Acceptance and Commitment Therapy ACT, a technique that helps people accept difficult thoughts and feelings, can help caregivers of children with RASopathies manage parenting stress. The study includes an initial pilot phase followed by a randomized trial to compare immediate versus delayed intervention effects. The study involves an 8-week ACT intervention delivered remotely through a mobile app called MetricWire. Participants watch weekly videos lasting 9 to 17 minutes and engage in coaching sessions via video chatone 75-minute session in week 1 and shorter 20- to 30-minute sessions in weeks 3 and 6. The trial has two phases a pilot study where all participants receive the intervention immediately, and a randomized controlled trial where participants either start the intervention right away or after approximately 2 months on a waitlist. Caregivers aged 18 or older who care for a child under 18 with a RASopathy and live with the child at least half the time are eligible. They will complete brief daily surveys five days a week and longer questionnaires before and after the intervention, as well as three months later. These assessments measure parenting stress, mindfulness, self-compassion, and related factors. The study monitors feasibility, acceptability, and changes in stress levels over time using electronic assessments and questionnaires.
CONDITIONS
Brief Title
Acceptance and Commitment Therapy for Caregivers of Children With a RASopathy: An Internal Pilot Feasibility Study and Follow-up Randomized Controlled Trial
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Ability to understand and sign informed consent
- Ability to read and speak English
- Age 18 years or older
- Caregiver of a child under 18 years with a diagnosis of a RASopathy syndrome including NF1, Noonan Syndrome, Legius Syndrome, CFC, or Costello Syndrome
- Child with RASopathy must live with caregiver at least 50% of the time
- Access to computer, smartphone, internet or willingness to use an iPod provided by the study
- Moderate level of parenting stress with a score of 15 or higher on the Parental Stress Scale
- Not currently participating or planning to participate in psychosocial interventions mainly targeting parenting stress during the study
You will not qualify if you...
- Another caregiver in the same household is participating in this study
- Uncontrolled psychiatric illness, cognitive impairments, or other conditions limiting compliance as judged by the Principal Investigator
Research Team
S
Staci M Peron, Ph.D.
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