Rare Group Problem Management Plus

Launched by CHILDREN'S NATIONAL RESEARCH INSTITUTE · Aug 5, 2024

Keywords

ClinConnect Summary

This clinical trial is studying a special program called Rare Group Problem Management Plus, designed to support parents or guardians of children with rare conditions. If you are an adult caregiver (18 years or older) of a child between the ages of 1 and 21 who has a rare disease, you may be eligible to participate. The program aims to help caregivers manage practical and emotional challenges by connecting with others in similar situations, meeting once a week for five weeks in a group setting.

Participants will take part in assessments before starting the program and again a few weeks after completing it. These assessments are simple and should only take about an hour. The sessions will be conducted through telemedicine, which means you can join from home using a smartphone or tablet—don’t worry if you don’t have one, as the study team will assist you. Please note that there is no payment, materials, or medication provided for participating in this trial.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• • • Family caregiver aged 18 years or older of a child with a rare disease from infancy to age 21 years.
• • Understands and speaks English or Spanish. Reading or health literacy is not required.
• • Signed consent.
• • Signed waiver of assent for child.
• Exclusion Criteria:
• • Family caregiver is under the age of 18 years.
• • Child with the rare disease is over the age of 21 years.
• • Family caregiver is actively suicidal, homicidal, or psychotic.
• • Family caregiver is impaired (cognitively or by drugs or alcohol).
• • Family caregiver has a low level of distress.