Research graph
References from Living on fragile skin: the lived experiences of children with epidermolysis bullosa. Local targets link to admitted publications; unresolved targets remain external evidence.
Health-related quality-of-life evaluation in epidermolysis bullosa: A scoping review
10.1093/bjd/ljaf274 · 2025 · External reference
Epidermolysis bullosa
10.1038/s41572-020-0210-0 · 2020 · External reference
Determination of validity, reliability and sample size in qualitative studies
2016 · External reference
The challenges of living with and managing epidermolysis bullosa: Insights from patients and caregivers
10.1186/s13023-019-1279-y · 2020 · External reference
The impact of epidermolysis bullosa on the family and healthcare practitioners: A scoping review
10.1111/ijd.16197 · 2023 · External reference
When care hurts: Parents’ experiences of caring for a child with epidermolysis bullosa
10.1186/s13023-024-03502-5 · 2024 · External reference
10.1186/s13023-025-03635-1
10.1186/s13023-025-03635-1 · External reference
The relationship between parental stress, resilience, and quality of life in parents of children with epidermolysis bullosa
10.1038/s41598-025-23223-4 · 2025 · External reference
Multidisciplinary management of epidermolysis bullosa
2026 · External reference
Assessment of mobility, activities and pain in different subtypes of epidermolysis bullosa
10.1111/j.1365-2230.2004.01428.x · 2003 · External reference
A child-centred research checklist to improve the design and reporting of paediatric research studies: A descriptive mixed methods study
10.1016/j.ijnurstu.2024.104958 · 2025 · External reference
Perspectives of mothers on the quality of life of children with epidermolysis bullosa and their parent
10.31299/hrri.59.1.6 · 2023 · External reference
Epidermolysis Bullosa
2021 · External reference
Consensus reclassification of inherited epidermolysis bullosa and other disorders with skin fragility
10.1111/bjd.18921 · 2020 · External reference
Epidermolysis bullosa: Pediatric perspectives
10.2174/1573396317666210525161252 · 2022 · External reference
Living with epidermolysis bullosa: Daily challenges and health-care needs
10.1111/hex.13006 · 2020 · External reference
Parental caregiving experiences in epidermolysis bullosa: A phenomenological study
2025 · External reference
Navigating the diagnostic journey of epidermolysis bullosa: A qualitative study of the lived experiences and needs of parents and patients
10.1093/bjd/ljae242 · 2024 · External reference
Growth profile and anaemia in children with epidermolysis bullosa
10.1111/bjd.18624 · 2019 · External reference
Epidermolysis bullosa in Spain: A qualitative analysis of its social impact on families with diagnosed minors
10.1111/hex.14128 · 2024 · External reference
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)
10.1111/jep.70345 · 2026 · External reference
10.1186/s13104-024-06968-5
10.1186/s13104-024-06968-5 · External reference
Living with epidermolysis bullosa: Daily challenges and coping strategies
10.1093/bjd/ljae373 · 2025 · External reference
Neonatal case series with the diagnosis of epidermolysis bullosa
2011 · External reference
The supportive care needs of parents with a child with a rare disease: A qualitative descriptive study
10.1016/j.pedn.2015.10.022 · 2016 · External reference
The lived experience and supportive care needs of Australian parents caring for children with epidermolysis bullosa: A qualitative descriptive analysis
10.1186/s13023-025-04159-4 · 2025 · External reference
Nursing care based on the roper, Logan and tierney nursing model for the child diagnosed epidermolysis bullosa: A case report
2023 · External reference
The physical, emotional, social, and functional dimensions of epidermolysis bullosa. An interview study on burdens and helpful aspects from a patients’ perspective
10.1186/s13023-024-03475-5 · 2025 · External reference
Shaping a better future for children living with rare diseases: The pivotal role of paediatric nurses
10.1016/j.pedn.2025.10.015 · 2025 · External reference
Quality of life in people with epidermolysis bullosa: A systematic review
10.1007/s11136-020-02495-5 · 2020 · External reference
Validity and reliability in qualitative research: A model proposal
2022 · External reference
Diagnosis, treatment and management of epidermolysis bullosa
10.12968/bjon.2016.25.8.428 · 2016 · External reference
Caregiving experiences of caregivers of children with rare diseases: A qualitative meta-synthesis
10.1016/j.pedn.2023.12.003 · 2024 · External reference
Nutritional aspects of children and adolescents with epidermolysis bullosa: Literature review
10.1590/abd1806-4841.20153206 · 2015 · External reference
