The Chancellor’s Award for Community Engagement recognises and values University staff and student initiatives that promote the social, environmental, economic and cultural development of communities that are taken in partnership with communities. Prof Cowin and Dr Kopecki’s community based project titled “Improving the quality of life for seriously ill children with skin blistering” highlights the Future Industries Institute's vision for research inspired partnership, that leads to real life benefits to industry, end-users and the local community.
In collaboration with community partners: Dystrophic Epidermolysis Bullosa Research Association (DEBRA) Australia, Women’s and Children’s Hospital - Department of Dermatology, BrightSky Australia and Little Heroes Foundation, Prof Cowin and Dr Kopecki examined the benefits of an in-home nursing program designed for children with a rare skin blistering condition called Epidermolysis Bullosa (EB).
The skin of EB patients blisters spontaneously and requires 24hr care, including painful dressing changes every 2-3 days that take upwards of 3hrs each time. This places an enormous toll, not only on the patient’s well-being (who are usually children) but also on the relationship between the child and their parents/caregivers. Widespread body blistering often leads to sepsis which is a major concern for these patients resulting in significant mortality. Additionally, the chronicity of EB wounds often leads to skin cancers significantly reducing a patient’s life expectancy.
As no cure exists, the current management of EB patients is passive and relies primarily on the use of wound dressings. Prof Cowin’s research at UniSA's Future Industries Institute has identified novel therapeutic targets for EB and is developing an antibody therapy to promote healing of the wounds of EB patients.
This community project is significant, as it identified a current gap in patient care, and led to a significant improvement in the quality of life for chronic EB patients as well as improving the understanding of the disease on a patient’s mental wellbeing. To our knowledge, this is the first in-home nursing project of its kind which utilised registered nurses specifically trained to care for EB patients, to provide the much needed nursing support and relief for families living with EB.
This project was initially piloted in South Australia and then expanded into a national program involving over 15 families and 25 community registered nurses. The project identified clear benefits to the EB community including; improvement in quality of life, a better provision of support, and improved family life management. These findings were the first to highlight the benefits of this national home nursing program for EB patients within Australia and demonstrate the continued need and benefit of home nursing for patients with severe skin blistering disorders.
“The benefits were significant and the program has now been fully extended as an ongoing endeavour by DEBRA Australia, while similar schemes are adopted internationally” says Dr Kopecki.
The findings from this community project were published in the International Wound Journal and Prof Cowin and Dr Kopecki plan to work closely with DEBRA Australia to assess the effects of long term care in a follow-up study and assess the effect of both community and hospital nursing with a special focus on mental health, which is a major priority area for DEBRA Australia and patients with the chronic skin blistering disease Epidermolysis Bullosa.