An interpretative phenomenological analysis of the lived experience of parental caregivers for children with severe epidermolysis bullosa

Providing care to child with a chronic, rare diseases has been identified as a major life stressor with a myriad of negative physical and mental health consequences. These stresses have previously been found to create burden that may impair caregiving efforts and increase the risk of mortality for both the caregiver and affected child. Many rare diseases affect children. It is not known how caregiver burden and the source of stress varies by disease. Qualitative methods have been used to understand caregiver experience with the rare disease, epidermolysis bullosa (EB), but no such studies have occurred in the United States. In order to better understand the experience of caregiving for a child with EB in the United States, a qualitative, phenomenological study was conducted. Data were collected via semi-structured interview concerning one primary research question, what is the general experience of being an EB caregiver?, and five sub-questions: (1) What stresses are specific to EB caregiving?, (2) How do EB caregivers learn to care for their child with severe EB?, (3) How do EB caregivers experience medical interactions?, (4) How do EB caregivers experience the hospitalization of their child?, and (5) How do EB caregivers cope with their caregiving role? Data analysis, using interpretive phenomenological analysis, yielded several novel findings. These included: an unusually strong emotional connection between the caregiver and child with EB, experiences of depersonalization or derealization for the EB caregiver during wound care, the positive impact of tempering expectations and celebrating for victories for the affected child, the regularity of medical injury for EB children, the traits of physicians perceived to be helpful or harmful, the stresses associated with hospitalization of children with EB, and how public recognition through community events buffers stress for EB caregiver. Finally, a framework of risk factor, protective factors, and burdensome outcomes was constructed. Risk factors were condensed into three domains: time constraints, financial problems, and pain in the affected child. Control and community supper were among the identified protective factors for EB caregivers. These findings have implications for counseling interventions for use EB caregivers, especially in hospital settings