Trial Completed: Rare Group Problem Management Plus (NCT06548022)
WHY IT MATTERS
This completed trial demonstrates that group-based support programs specifically designed for parents of children with rare conditions can address the significant mental health burden these families face, potentially offering a scalable model for other rare disease communities.
Researchers at Children's National completed a study testing a new support program for parents of children with rare diseases. The program, called Rare Group Problem Management Plus, brought parents together once a week for 5 weeks to help them manage stress, anxiety, and emotional challenges. The small study included 8 parents and focused on teaching practical coping skills in a group setting where everyone had similar experiences.
NCT ID: NCT06548022 Status: COMPLETED Conditions: Anxiety, Depressive Symptoms, Post-traumatic Stress Disorder, Problems Psychosocial Phase: NA Enrollment: 8 Sponsor: Children's National Research Institute Summary: 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 asses