Evaluation of two family-based intervention programs for children affected by rare disease and their families - research network (CARE-FAM-NET): study protocol for a rater-blinded, randomized, controlled, multicenter trial in a 2x2 factorial design.

BMC Family Practice
Johannes BoettcherSilke Wiegand-Grefe

Abstract

Families of children with rare diseases (i.e., not more than 5 out of 10,000 people are affected) are often highly burdened with fears, insecurities and concerns regarding the affected child and its siblings. Although families caring for children with rare diseases are known to be at risk for mental disorders, the evaluation of special programs under high methodological standards has not been conducted so far. Moreover, the implementation of interventions for this group into regular care has not yet been accomplished in Germany. The efficacy and cost-effectiveness of a family-based intervention will be assessed. The study is a 2x2 factorial randomized controlled multicenter trial conducted at 17 study centers throughout Germany. Participants are families with children and adolescents affected by a rare disease aged 0 to 21 years. Families in the face-to-face intervention CARE-FAM, online intervention WEP-CARE or the combination of both will be treated over a period of roughly 6 months. Topics discussed in the interventions include coping, family relations, and social support. Families in the control condition will receive treatment as usual. The primary efficacy outcome is parental mental health, measured by the Structured Clin...Continue Reading

Associated Clinical Trials

Apr 9, 2020·Silke Wiegand-Grefe, Prof. Dr.

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Citations

Jun 3, 2021·International Journal of Environmental Research and Public Health·Johannes BoettcherHolger Zapf
Sep 11, 2021·Orphanet Journal of Rare Diseases·Johannes BoettcherMichael Boettcher

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Software Mentioned

DE
KidCOPE
secuTrial®
CHROKODIL
WEP
CARE
FAM
CSSRI
NET
DISABKIDS

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