rare group problem management plus

Conditions: Anxiety; Depressive Symptoms; Post-traumatic Stress Disorder; Problems Psychosocial

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 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.

participants are being asked to be in the study because they are the parent or legal guardian of a child (infancy up to 21 years old) with a rare condition. the group based psychoeducational intervention is called rare group problem management (pm) plus intervention. 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) investigators will be recruiting for 3 groups of 10 families each, for a total of 30 families who will participate in this study from children's national hospital. there are 7 study visits. study timeline: study visit 1: assessment-before group pm+ study visit 2: session 1-managing stress study visit 3: session 2-managing problems study visit 4: session 3-get going, keep doing study visit 5: session 4-strengthening social support study visit 6: session 5-staying well and looking forward study visit 7: assessment within 2 weeks after complete group pm+ sessions will occur over zoom telehealth and facilitated by a licensed clinical psychologist and a genetic counselor trainee. investigators will use chi-square tests and fisher's exact test to measure changes from baseline to 2 weeks post-intervention. investigators will also collect qualitative data on what participants liked about the intervention, what they did not like, and what they think will improve the intervention.

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.

Keywords: rare disease pediatric family caregiver psychoeducation group intervention