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

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

Abstract Background 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 b...

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Bibliographic Details
Main Authors: Johannes Boettcher, Bonnie Filter, Jonas Denecke, Amra Hot, Anne Daubmann, Antonia Zapf, Karl Wegscheider, Jan Zeidler, J.-Matthias Graf von der Schulenburg, Monika Bullinger, Miriam Rassenhofer, Michael Schulte-Markwort, Silke Wiegand-Grefe
Format: Article
Language:English
Published: BMC 2020-11-01
Series:BMC Family Practice
Subjects:
Rare diseases
Family intervention
Internet-based intervention
Mental health
Randomized controlled trial
Online Access:http://link.springer.com/article/10.1186/s12875-020-01312-9

Internet

http://link.springer.com/article/10.1186/s12875-020-01312-9

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