Self-management Training for Parents With Chronic Muscular Dystrophia
NCT02641275 · Status: WITHDRAWN · Phase: NA · Type: INTERVENTIONAL
Last updated 2019-08-19
Summary
The relentless progressive process of muscular dystrophy requires extraordinary medical, physical, and emotional care with severe consequences for caring parents (increased stress and diminished social, psychological and physical well-being). Despite the obvious need of support for parents only few and weak data exist regarding efficiency and efficacy of specific interventions supporting parental resilience and coping strategies. The presenting study aims to fill this gap by evaluating the efficacy of a structured self-management training for parents of children with severe progressive muscular dystrophy compared to parents receiving treatment as usual (TAU). In addition, investigators measure established biomarkers of psychosocial stress, such as pro-inflammatory cytokines, which will be used to monitor physiological changes with assumed significance for parental health.
Conditions
- Muscular Dystrophies
Interventions
- OTHER
-
Structured self-management-training
Structured self-management-training (incl. systemic analysis, coaching, teaching) in 4 sessions
Sponsors & Collaborators
-
University of Zurich
collaborator OTHER -
University Children's Hospital, Zurich
lead OTHER
Principal Investigators
-
Jürg C Streuli, MD PhD · University Children's Hospital, Zurich
Study Design
- Allocation
- RANDOMIZED
- Purpose
- SUPPORTIVE_CARE
- Masking
- NONE
- Model
- PARALLEL
Eligibility
- Sex
- ALL
- Healthy Volunteers
- No
Timeline & Regulatory
- Start
- 2017-01-31
- Primary Completion
- 2018-12-31
- Completion
- 2019-12-31
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