Patient and public involvement in palliative care: Challenges and opportunities

Margaret Ogden, Alzheimer’s Society Research Network volunteer and Halle Johnson, patient and public involvement coordinator at the Cicely Saunders Institute share their experiences of working together to evaluate patient and public involvement in palliative care.

Palliative care is the treatment, care and support for people with a life-limiting illness, and their family and friends.  Research in this area focuses on managing symptoms, emotional and psychological support for patients, caregivers and family, and helping to improve care towards the end of life among other things. 

Margaret's story

My motivation for getting involved in dementia research stemmed from my grandmother’s diagnosis of Alzheimer’s disease in the late 90s. Having lived with us, her admittance into care was heart wrenching. 

My grandmother’s end of life was a peaceful passing. Palliative care was efficient and compassionate in a warm, non-clinical environment. This was in stark contrast to my mother’s experience two years later. Whilst her care was clinically adequate, the essence of care was sadly lacking. I was unable to access the Palliative Care Specialist – perhaps understandable as it was over the Christmas period.

Whilst I felt the clinicians had got on top of her pain, this was not the case for her sedation. At the time I was on chemo myself and I contacted my Macmillan nurse. She spoke to my mother’s nurse and the situation improved.

These experiences gave me a determination to make a difference in research in both dementia and palliative care.

Involving the experts 

Palliative care is by definition person centred and so patients, carers and members of the public with experience of palliative care should be involved in this sensitive area of research.
However, there are challenges and a lack of evidence in understanding the best approaches to involve those affected by life-limiting illness in research. Gathering the view of people with advanced illness or considerable disability can be difficult as well as time consuming and requiring significant resources.

We set out to evaluate patient and public involvement (PPI) in palliative care research, to identify successful approaches to PPI in this field and areas that could be improved. We brought together a research team including three people with personal experience of advanced illness who were involved in every stage of the project.

Halle and Margaret smiling together

Understanding successful approaches to public involvement 

It is so important that we gather feedback from researchers and the public about how approaches to involvement are working. Evaluation of PPI is a relatively new area, and this research would directly feed into our understanding of PPI in palliative care – something that would be beneficial for researchers and PPI contributors. PPI has evolved greatly in the 15 years since I have been a volunteer in palliative care. 

We carried out focus groups and interviews with people with experience of palliative care and researchers to understand their experiences of PPI in this area. The results were then analysed by the team, co-led by Margaret.

"The most exciting opportunity during the project was the chance to learn about qualitative analysis.  The first task was to devise a comprehensive coding framework.  Several pages of possible issues (or ‘themes’ in academic speak) were soon arrived at – some were more general such as communication and diversity; others were more specific such as meaningful involvement and building relationships.  I had one-to-one training in thematic analysis – this was complex and challenging and as part of this I also learnt about instances of silence (i.e. when a theme was identified by one group, but not the other) and reaching consensus. But when it came to analysis of the interviews, it was in fact straightforward."

From this analysis we found three themes which were crucial to successful public involvement in palliative care and rehabilitation research, these included: 

  • Building and maintaining relationships, with careful consideration of emotional support when broaching sensitive topics
  • The ability to work flexibly with people living in complex and unpredictable circumstances
  • An emphasis on involving people with diverse experiences relevant to the specific research project

A new approach to public involvement in palliative care

Reflecting on these findings Halle Johnson said:

'Reflecting on our approach to public involvement is crucial to understand what works well and what does not. Through this work we have been able to identify areas which need particular consideration when involving people with life-limiting illness in our research. At the Cicely Saunders Institute, we will use these findings to inform a new strategy for patient and public involvement which will emphasise emotional support, flexibility and diversity in our approach to public involvement in palliative care research..

Read the full paper Patient and public involvement in palliative care research: What works, and why? A qualitative evaluation

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