Sam Porter’s research deals with one of the most difficult and sensitive areas of human experience – caring for people who are reaching the end of their lives.
There is a particular focus on the issues created by cancer cachexia – wasting and weight loss caused by cancer. Sam says, ‘Most people will have known someone with advanced cancer where the weight just drops off and there’s nothing you can do about it. Towards the last stages, no active treatment can turn it back and what we need to ensure is that people are comfortable, both mentally and physically, and have dignity.’
Sam has been Chair of Nursing Research at the School of Nursing and Midwifery since 1999, the first person to hold the post. Previously he was a clinical nurse, then gained a doctorate in sociology at Queen’s and became a Reader in Sociology.
‘Initially we worked largely on methodological issues, then in 2007 the School decided that, given our areas of expertise, we should develop a cancer nursing and palliative care research group. We have been developing that over the past five years.’
The current research project on cachexia has been supported by funding from the All-Ireland Institute of Hospice and Palliative Care. ‘It started off when Dr Joanne Reid joined our team. She had just finished her PhD, looking at the experience of patients and informal carers of people with this condition.
‘She discovered that there were lots of problems through lack of understanding, one of the most important being that it caused tension in the family, largely because the person involved didn’t want to eat, whereas the family members expressed their love through trying to get them to do so.’
This led to the idea of matching research looking at the attitudes of the professionals. ‘We discovered a big gap. They weren’t very knowledgeable about it, didn’t get any education on it and didn’t feel prepared enough to deal with the issue effectively with patients.’
The result is a DVD – Understanding Cachexia – to provide guidance for patients and informal carers. ‘Our impact thus far has been to alert the professional community to the problem and to the fact that not attending to this issue can lead to patients and families becoming very distressed.
‘This is an example of why nursing research is so important. The vast majority of nurses who will be practising in Northern Ireland come through this School. That’s why we need research activity. Research feeds into education and training, purely and simply. We have to ensure that our students graduate and take up their careers with the view to using research evidence in all aspects of their practice.’
Sam, Joanne and colleagues have established that the cachexia awareness project is pertinent locally – but what about others parts of the globe?
Sam says, ‘The next stage is to expand, to see if the work we’ve done is applicable across the English-speaking world. To that end, we have developed joint research projects with the University of Melbourne and the Mayo Clinic in Minnesota to see if the kind of intervention represented by the DVD is appropriate for them.
‘We all have the right to end our lives as comfortably and as lacking in distress as possible, so it’s imperative that those charged with our care have the knowledge and skills, and the attitudes to promote that right, to the greatest degree that they possibly can.
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