ArticleHealth expectations : an international journal of public participation in health care and health policy2024
Epidermolysis Bullosa in Spain: A Qualitative Analysis of Its Social Impact on Families With Diagnosed Minors.
Article in Health expectations : an international journal of public participation in health care and health policy, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 7 papers.
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Who cites it
7 citing papers in PubMed.
- Mesenchymal stromal cell infusions of umbilical cord-derived mesenchymal stromal cells in children with Recessive Dystrophic Epidermolysis Bullosa (MissionEB): a qualitative sub study of a randomised, double-blind, placebo controlled, crossover, phase 3 trial.Orphanet journal of rare diseases · 2026Trial
- Quality of life in children and adults with epidermolysis bullosa: the QoL-REB explorative study.Orphanet journal of rare diseases · 2026Article
- Interdisciplinary Approach in Pediatric Patients With Recessive Dystrophic Epidermolysis Bullosa: Experience From the Dermatology Service and the Palliative Care and Complex Chronic Patient Team at Sant Joan de Déu Hospital (Barcelona, Spain).Journal of evaluation in clinical practice · 2026Article
- Family burden and caregiver psychological stress in epidermolysis bullosa in China: a cross-sectional survey.Frontiers in public health · 2026Article
- The segmentation of the Argentine healthcare system in the care of patients with epidermolysis bullosa: challenges and proposals for a comprehensive model.Journal of community genetics · 2025Article
- Parental Caregiving Experiences in Epidermolysis Bullosa: A Phenomenological Study.International journal of community based nursing and midwifery · 2025Article
- The physical, emotional, social, and functional dimensions of epidermolysis bullosa. An interview study on burdens and helpful aspects from a patients' perspective.Orphanet journal of rare diseases · 2025Article
Corrections and comments
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Authors and funding
3 authors.
Funding
Abstract
backgroundEpidermolysis bullosa (EB) comprises a group of rare types of genodermatoses characterized by extreme mucocutaneous fragility, leading to blistering and/or erosions, even with minimal trauma. Continuous care through wound management is an integral part of daily life for the families and individuals affected. The aim of this study was to assess the social reality and impacts on families of having minor members diagnosed with EB in Spain.
methodsA qualitative methodology was employed, utilizing four focus groups entailing participation by 24 parents (19 mothers and five fathers) of minors diagnosed with EB in Spain.
resultsNegative impacts on the family nucleus were evident in four priority areas of analysis: sociorelational, economic-labour, physical and psychoemotional, with significant differences observed based on the severity of the symptoms.
conclusionImpacts on the family nucleus are noticeable from birth, influencing all other daily life routines and complicating family planning and organization. There is an imperative need to enhance the availability of sociohealth resources and to adopt an interdisciplinary approach to address their biopsychosocial needs. PATIENT OR PUBLIC CONTRIBUTION: The active participation of relatives of minors diagnosed with Epidermolysis Bullosa (EB) is invaluable to sociohealth professionals, legislators and researchers. A team member conducts their professional activities at DEBRA España (national patient association dedicated to enhancing the quality of life for individuals with EB and their families), actively engaging in all study phases.
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