‘You’re whatever the patient needs at the time’: The impact on health and social care professionals of supporting people with epidermolysis bullosa

Abstract

Professionals working with people who encounter pain and suffering can experience adverse emotional effects themselves. However, to provide effective support it is necessary to understand specific work-related experiences and contexts. This study investigated the impact on professionals of supporting people with the skin condition 'epidermolysis bullosa'. A two-part mixed methods design was utilized. Part one comprised interviews with specialist nursing and social care professionals (n = 7). Part two comprised a survey administered to a range of EB specialist professionals (n = 26). The interview data were analysed inductively and informed the survey design. The survey data were analysed deductively and compared to the interview findings. Three integrated themes were subsequently depicted: the intensity and depth of involvement; managing with limited resources; and the need to look after yourself. Findings show the ways in which the work can affect well-being and how the impact is intensified by the low numbers of specialist professionals in the field. But the support of team members, access to effective supervision and the rewards of working with a remarkable population make the professional role worthwhile. Adequate clinical supervision, skills training and access to multi-disciplinary expertise were all highlighted as beneficial for well-being.