Creating a better support system for Epidermolysis Bullosa Patients: how we involve everyone in making sustainable solutions

• Primary Researcher: Dr Rosemary Gowran
• Institution: University of Limerick
• Type of EB: All EB types
• Funding amount: €17,705
• Project length: 3 years

Findings emphasized that the complexities of life with EB are more than ‘skin deep’. The lived experience of stakeholders revealed many levels of emotion, both positive and heart-rending. Despite the positive efforts of specialists in this field, inadequacies to meet the primary needs of people with EB, such as bandages—fundamental for survival—were highlighted. Participants reported challenges relating to understanding patients’ needs, access to consistent services within hospitals and the community, time constraints, and the strong emotions evoked by this severe and rare disease.

Dr Rosemary (Rosie) Gowran is a lecturer in Occupational Therapy, School of Applied Health, Faculty of Education and Health Sciences, University of Limerick; Adjunct Senior Lecturer University of Sunshine Coast, Queensland Australia. She believes sustainable health and social care infrastructure, which advocates for appropriate and sustainable person-centred service provision to meet primary needs as a responsibility of the whole community, is key.

Taking a human-rights perspective she utilises participatory and inclusive methodologies engaging key stakeholders and is skilled in facilitating patient and public involvement research projects nationally and internationally, conducting situational analysis and developing strategic plans collectively, towards transforming services, improving outcomes and sustainability indicators.

Rosie has developed a sustainable community of practice (SCOP) model, which acts as a systems thinking framework to facilitate stakeholder centred action research. She is part of development team for SOLA Centre of Excellence for Sustainable Quality in the Community & Voluntary Sector in partnership with the Disability Federation of Ireland and Johnson & Johnson.

Internationally, Rosie is an invited member of the Global Cooperation on Assistive Technology (GATE), World Health Organisation and the International Society of Wheelchair Professionals (ISWP), University of Pittsburgh, addressing education and research innovation, influencing global policy development to improve access to assistive technology for all.

Rosie is a member of several scientific committees, associations and is on the Association of Irish Powerchair Football (AIPF) and the ISWP Professional Standards Board. Current projects include Sustainable Wheelchair and Seating Service Provision; Developing a Sustainable Support Service Strategy for People Living with Spina Bifida and Hydrocephalus in Ireland.

Grant Title: Adopting a Sustainable Community of Practice Model when Developing a Service to Support Patients with Epidermolysis Bullosa (EB): A Stakeholder-Centered Approach

Background & Objective

Epidermolysis bullosa (EB) is a rare, genetic skin condition that is complicated, distressing, and painful and permeates every aspect of patients’ lives. Support services are essential for meeting the primary needs of patients and families living with EB; however, provision is challenged by many complex issues. In collaboration with the patient organization DEBRA Ireland, this research conducted an in-depth analysis of Irish healthcare support services for EB, with a view to moving towards an improved and sustainable care pathway.

Methods

A sustainable community of practice model (SCOP), as a core construct provided a simplified framework when studying this complex system. The research utilized mixed methods, comprising individual interviews, questionnaires, and a participatory action research workshop based on a soft systems approach. The study engaged patients, family members, service providers, and policy developers.

Results

Findings emphasized that the complexities of life with EB are more than ‘skin deep’. The lived experience of stakeholders revealed many levels of emotion, both positive and heart-rending. Despite the positive efforts of specialists in this field, inadequacies to meet the primary needs of people with EB, such as bandages-fundamental for survival-were highlighted. Participants reported challenges relating to understanding patients’ needs, access to consistent services within hospitals and the community, time constraints, and the strong emotions evoked by this severe and rare disease.

Conclusions

The study identified several areas that can be targeted to bring about improvements in meeting primary needs. Education and research at public, policy, and practice levels need to be prioritized. It is imperative that citizens move beyond an awareness that EB exists and demonstrate a consciousness about the importance of advocating and enabling seamless and sustainable support services through collective action.

The findings reveal five key priorities for Decision Makers when developing a service to support patients with EB, which are as follows.

1. Development of services to meet the primary needs of people living with EB. Free medical treatment and bandages should be provided as a basic human right.
2. Access to specialist EB support staff, within both hospital and community settings.
3. Appropriate allocation of time within the health system to understand the challenges of living with EB, building therapeutic relationships, and prioritise treatment.
4. Education and training and the potential for involvement in research relating to EB should be provided to all involved in support services.
5. Generating awareness about living with EB and the support service required, through consciousness, communication, and collaboration, within all levels of the healthcare system and beyond.

The scientific paper which was published as a result of this study can be viewed here: