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This research by Sandra Kearney, University College Dublin (UCD), offered EB patients a platform to voice their healthcare needs, filling a crucial gap in knowledge. Additionally, the research demonstrated how participatory action research can create partnerships among key stakeholders to drive positive changes in healthcare systems.
Ultimately, the findings of this study aim to provide healthcare professionals with valuable insights into the lives of EB patients. By understanding their needs better, professionals can deliver more effective services tailored to the home, community, and hospital settings, ultimately improving the quality of care for this population.
This paper aimed to understand the specific healthcare needs of people with Epidermolysis Bullosa (EB) to help improve healthcare services for them. We used a research approach where patients and others affected by EB actively participated in the study process. By analyzing the gathered information, we identified five main areas where EB patients need support: managing physical health issues, accessing services in their community or at home, getting EB-specific information and emotional support, communicating effectively with healthcare professionals, and understanding their entitlements to benefits.
The findings of our study were used to advocate for more resources to support individuals and families living with EB. DEBRA Ireland, a patient advocacy group, led the effort to push for these resources at a national level. The research steering committee, which included various stakeholders, played a vital role in making sure that the study was relevant and helpful for people with EB.
In summary, by involving everyone affected by EB and working together, we aimed to improve the health and well-being of EB patients across Ireland.
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.
The purpose of this paper was to provide a report of a study, which was designed to identify the specific health-care needs of people with EB with a view towards informing the development of appropriate EB-related health-care services. A qualitative participatory action research approach guided the design of the study while thematic analysis of the data identified five distinct health-care care needs. These needs related to (a) support managing physical health-care issues; (b) access to community/home-based services; (c) EB-specific information and psychosocial support; (d) effective interaction with health-care professionals; and (e) advice regarding benefits and entitlements. The key findings from this study were used to lobby for the allocation of additional resources for individuals and families living with EB. The patient advocacy group, DEBRA Ireland, spearheaded the lobbying process at a national level while the research steering committee was instrumental in designing this study so that it was both appropriate and relevant for people with EB. In this way, a participatory action research approach, while challenging, enabled relatively disparate yet interconnected stakeholders to work together towards achieving a unified aim, that of working towards improving the health and well-being of people with EB on the island of Ireland.
The scientific paper which was published as a result of this study can be viewed here:
Dr Sinéad Hickey, Debra Head of Research
It is our role to increase EB research both in Ireland and across the globe.
We have funded and supported many research initiatives, contributing to a better quality of life for people living with EB.
We work closely alongside researchers, DEBRA International, clinicians and people linked in with us for all our research projects.
