Involving burn survivors in participatory research

28th May 2014

 

The effects of burn injury not only affect physical function and appearance but can have devastating psychological effects such as post-traumatic stress disorder, depression and difficulties in coping generally. This can have an effect on employment, relationships and daily life.

Burn injury affects all age groups from the very young to the elderly. People in vulnerable groups such as those in difficult social circumstances, those living in deprived areas, people with mental health issues and those in institutions or needing care at home are more prone to injury and also have poorer outcomes.

Burns patients traditionally do not participate in research in comparison with other trauma patients so it is really hard to get meaningful data. Where burn survivors have been studied it has been with an expressed intention to ensure the research in which they take part, improves outcomes for future burns patients. This may be by participation in clinical trials or by gathering opinion and experiences through focus groups. Typically, the research is carried out with the participant, or often undertaken by remote scientists in their laboratories.

A new study hoping to be set up at The Blond McIndoe Research Foundation with colleagues at Queen Victoria Hospital and the University of Brighton will seek to identify what enables burn survivors and their relatives to be active participants in research. It will identify what would make participation relevant, timely, and in their contribution, find value to support their well-being. This new study still requires additional funding but hopes to find ways to help vulnerable and hard to reach groups participate in research. The study aims to maximize time spent with burn survivors and their families, hearing about their priorities and understanding how continuing participation might be effected. This study will put patients at the centre of helping to devise relevant research programmes and builds on the legacy of Sir Archibald McIndoe and his early holistic approaches to patient care.

The Blond McIndoe Research Foundation depends entirely on donations to keep it at the forefront of burns, wound healing and melanoma research. If you wish to know more about its work, get involved in its activities or to donate to its research activity please visitwww.blondmcindoe.org.

Professor Anthony D Metcalfe
Director of Research, Blond McIndoe Research Foundation

 

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