Parental Caregiving Experiences in Epidermolysis Bullosa: A Phenomenological Study

Epidermolysis bullosa (EB) is a rare, inherited disease characterized by mucocutaneousfragility. It requires continuous family support and caregiving. However, insights into the complexrealities of daily caregiving roles for parents remain limited. This study aimed to explore the livedexperiences of Iranian family caregivers caring for their children with EB. This phenomenological study was carried out from February to November 2023 at MashhadAkbar Hospital or participants’ homes. Purposeful maximum variation sampling was used to recruit10 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. Caregivers’ experiences elucidate the profound adversity endured by parents raising childrenwith EB. Four themes emerged from the data: “lost and confused about care and treatment”; “trapped inendless cycle of hardship caring”; “inevitable self-isolation”; and “bitter and deteriorating family life”. Family caregivers who provide care for children with EB face numerous difficulties,leading to significant stress and heavy responsibilities. Their lived experiences provide a comprehensivepicture of the physical, psychological, and social difficulties related to this rare disease.