Parental Caregiving Experiences in Epidermolysis Bullosa: A Phenomenological Study

Articles in Press

Document Type : Original Article

Authors

1 Department of Medical-Surgical Nursing, School of Nursing and Midwifery, Mashhad University of Medical Sciences, Mashhad, Iran;

2 Nursing and Midwifery Care Research Center, Mashhad University of Medical Sciences, Mashhad, Iran;

3 Department of Pediatrics, School of Medicine, Mashhad University of Medical Sciences, Mashhad, Iran

10.30476/ijcbnm.2025.102011.2466

Abstract

Background: Epidermolysis bullosa (EB) is a rare, inherited disease characterized by mucocutaneous
fragility. It requires continuous family support and caregiving. However, insights into the complex
realities of daily caregiving roles for parents remain limited. This study aimed to explore the lived
experiences of Iranian family caregivers caring for their children with EB.
Methods: This phenomenological study was carried out from February to November 2023 at Mashhad
Akbar Hospital or participants’ homes. Purposeful maximum variation sampling was used to recruit
10 parents (3 fathers, 7 mothers) who met the inclusion criteria. Data were gathered through in-person,
semi-structured interviews and analyzed using Van Manen method in MAXQDA software version 2020.
Results: Caregivers’ experiences elucidate the profound adversity endured by parents raising children
with EB. Four themes emerged from the data: “lost and confused about care and treatment”; “trapped in
endless cycle of hardship caring”; “inevitable self-isolation”; and “bitter and deteriorating family life”.
Conclusion: Family caregivers who provide care for children with EB face numerous difficulties,
leading to significant stress and heavy responsibilities. Their lived experiences provide a comprehensive
picture of the physical, psychological, and social difficulties related to this rare disease.

Keywords

International Journal of Community Based Nursing & Midwifery

Articles in Press, Accepted Manuscript
Available Online from 20 January 2025

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