Support Program for Caregivers of Children and Adolescents with Rare Diseases (Neuro-e-Motion I-Care)

A free assistance program for parents offered by the University of Deusto

General objective of the project:

Evaluate the effectiveness of a teleassistance intervention program in improving the quality of life and psychosocial aspects of caregivers of children and adolescents with neuromuscular diseases and Wolf-Hirschhorn Syndrome.

Beneficiaries: 

Caregivers (parents and/or tutors) of children and adolescents affected by a neuromuscular disease (muscular dystrophies, myotonic dystrophies: juvenile or congenital myasthenia, among others) or Wolf-Hirschhorn Syndrome.

Caregivers (parents, mothers and / or guardians) of children and adolescents with Wolf-Hirschhorn Syndrome.

More information about the project:

First phase of the study:
Comprehensive assessment of of the experience of caregiver of children and adolescents with neuromuscular diseases

Comprehensive assessment of the experience of caregivers of Wolf-Hirschhorn

Adaptation of the assessment of caregiver experience with neuromuscular disorders

Funding entity:

Predoctoral grant of Basque Government 2015-2016 (PRE_2015_1_0169).