Rare Group Problem Management Plus

Description

Participants are being asked to be in the study if they are the parent or legal guardian of a child (\>1 year or \<18 years old) with a rare condition. The group based psychoeducational intervention is called Rare Group Problem Management Plus. Rare Group PM Plus may help adults with practical and emotional problems. It is a group program (there will be other men or women with similar problems) It happens once a week for 5 weeks (each session lasts 90 minutes) Participants will complete assessments before they start Rare Group PM+. Participants will also complete the same assessments within a few weeks of completing Rare Group PM+. Assessments should only take one hour. Study visits are by Telemedicine. Participants will need a smart phone or tablet. If they do not have a smart phone or tablet, the study team will help with this. Participants will not receive any materials or money or medication.

Conditions

Anxiety, Depressive Symptoms, Post-traumatic Stress Disorder, Problems Psychosocial

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Study Overview

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Study Details

Study overview

Participants are being asked to be in the study if they are the parent or legal guardian of a child (\>1 year or \<18 years old) with a rare condition. The group based psychoeducational intervention is called Rare Group Problem Management Plus. Rare Group PM Plus may help adults with practical and emotional problems. It is a group program (there will be other men or women with similar problems) It happens once a week for 5 weeks (each session lasts 90 minutes) Participants will complete assessments before they start Rare Group PM+. Participants will also complete the same assessments within a few weeks of completing Rare Group PM+. Assessments should only take one hour. Study visits are by Telemedicine. Participants will need a smart phone or tablet. If they do not have a smart phone or tablet, the study team will help with this. Participants will not receive any materials or money or medication.

Rare Group Problem Management Plus

Rare Group Problem Management Plus

Condition
Anxiety
Intervention / Treatment

-

Contacts and Locations

Washington

Children's National Hospital, Washington, District of Columbia, United States, 20010

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

  • * • 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.
  • * 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.

Ages Eligible for Study

18 Years to 99 Years

Sexes Eligible for Study

ALL

Accepts Healthy Volunteers

No

Collaborators and Investigators

Children's National Research Institute,

Maureen Lyon, PhD, PRINCIPAL_INVESTIGATOR, Children's National Research Institute

Study Record Dates

2025-01-31