Search

Background & Objective: Epidermolysis bullosa (EB) is the term used for a group of genetic skin fragility disorders. For those living with EB, pain represents a constant challenge, with blistering and tasks such as changing dressings, adding to the distress. This paper focuses on describing and exploring the health‐care needs of children, adults and families who are affected by EB. The specific aim of the paper is to identify the needs of the EB population with a view towards informing the development of a community liaison service to support adults living with EB and the parents/carers of children living with EB. Setting and Participants: Interviews with six adults and the parents of eight children with EB were conducted. The data were analysed thematically. All participants were resident on the island of Ireland and are therefore reflecting on services in this geographic region. Results: Participants' needs were grouped into five themes: support managing physical health‐care issues; access to community/home‐based services; EB‐specific information and psychosocial support; effective interaction with health‐care professionals; and advice regarding benefits and entitlements. Discussion and Conclusions: This article represents the health‐care needs and preferences of a broad spectrum of those with EB, highlighting the need for a comprehensive service regardless of the severity of the condition. [ABSTRACT FROM AUTHOR]

Aim: Nurse leaders influence workplace culture; however, little is known about ethnic cultural influences on nurse leader development. This research aims to identify personal strategies promoting effective leadership by nurse leaders from European small island countries. Design: Descriptive qualitative study. Methods: In 2017, nineteen semi‐structured interviews with nurse leaders from England, Greece, Republic of Ireland and Malta explored leadership journeys, strategies employed to support their growth and development, and how cultural identity played a role. Transcripts were analysed using reflexive thematic analysis. Results: Four main themes and 12 subthemes captured the strategies and approaches of the nurse leaders: (1) Influences, (2) Communication, (3) Process and (4) Relationships. These findings reflect and validate the five transformational leadership practices of the Exemplary Leadership Model. While cultural island identity was discussed, there was a shared cultural identity within the role of "nurse leader" that spanned all islands. Patient or Public Contributions: Nineteen nurse leaders contributed to this study. [ABSTRACT FROM AUTHOR]