Nicole Passi

University of Deusto | DEUSTO · Faculty of Psychology and Education

Introducción: La distrofia muscular de Duchenne (DMD) es una enfermedad neuromuscular genética ligada al cromosoma X, poco frecuente y caracterizada por un deterioro muscular progresivo. Afecta a la población infanto-juvenil, principalmente, y no tiene cura, por lo que la esperanza de vida es corta y acompañada de alteraciones psicosociales. Entre...

Caregivers’ emotions and finances are affected by the deterioration of functional capacity of patients with Duchenne muscular dystrophy (DMD), both in Mexico and Spain. Patient associations may reduce this impact on caregivers. This study aims to study the role of two models of associations, inspired by two different cultural models, in how the ser...

110 informal caregivers of children with MND from were recruited from various associations of affected persons of Spain (e.g., ASEM, BENE), Hospital of Basurto, and Hospital of Cruces. All caregivers were over 18 years of age, and the children in their care were under 18 years of age. A total of 91 women and 19 men participated, and the overall mea...

Evaluar el perfil psicosocial de los cuidadores informales de pacientes con enfermedades poco frecuentes, que han descargado la aplicación móvil para cuidadores de enfermedades poco frecuentes AppER, en las siguientes variables: calidad de vida, nivel de dependencia, sintomatología somática, niveles de soledad, estrategias de afrontamiento y el efe...

This study aims to evaluate the costs of informal care for children with neuromuscular disease and evaluate how physical and psychological health is associated with socio-demographic variables. A cross sectional design was used with a convenience sample of 110 carers that participated in this study. Participants were recruited from Spanish hospital...

Rare neuromuscular diseases (RNMDs) are a group of pathologies characterized by a progressive loss of muscular strength, atrophy, fatigue, and other muscle-related symptoms, which affect quality of life (QoL) levels. The low prevalence, high geographical dispersion and disability of these individuals involve difficulties in accessing health and soc...