This workshop was hosted by the Palliative Rehabilitation Research Partnership, and was designed to get researchers, clinicians, and members of the public together to develop research proposals. This helps researchers to generate and carry out research tackling the most pressing issues in palliative rehabilitation. Common issues in palliative rehabilitation that need improved intervention include ‘functional loss’ (a decreasing ability to carry out one’s daily tasks), fatigue, and breathlessness. Research in these areas looks at practical ways to improve support for patients and their informal carers going forward.
Feedback indicates that opening up spaces for researchers and public members of the rehabilitation partnership to collaborate is beneficial for all participants. Researchers have the benefit of feedback on their proposals, helping them ensure that their research gives as much value to patients and families as possible. Collaborative workshops, such as this one, give community members the opportunity to influence research and offer their own perspective for researchers to implement in their work.
When asked why he signed up to the workshop, Rashmi explained:
As a family carer from the Black Asian and Minority Ethnic community and member of the public, I wanted to learn and share my everyday challenges with other members of the public and with the clinical teams and researchers. I wanted to understand how research studies are identified, designed, and delivered for meaningful changes on future health and care services, but also influence and make sure voices of the seldomly engaged people could be meaningfully heard
These real-life experiences help researchers and clinicians to reflect on the care that is currently being provided, and to appreciate the changing needs of patients at different stages of their journey with palliative care and rehabilitation.
Prior to the workshop, participants had completed an activity to come up with new research questions and provide each other with feedback. Public members are uniquely able to reflect on their experience, and what they would commend or improve in terms of the health and social care they (or their loved one) received. This input in the refining of research questions was what prompted PPI member Margaret to attend the workshop:
I had enjoyed the scoring of the research questions - it had been challenging as all the questions seemed important. I’d had to put myself in my uncle’s shoes, as he was no longer able to communicate with me as his dementia advanced. But I had a good idea of what he’d found difficult in his care provision – both in his domestic living and also in the care home setting.
Feedback from this activity was useful for researchers who were looking at which symptoms, conditions, and issues were priorities for patients and families. Projects addressing some of these research questions were then presented for further feedback at the online workshop. Margaret described what it was like to participate in the session:
“The workshop was dynamic and high profile – I could see that from the range of attendees. I have to admit to feeling a bit overwhelmed, though as the workshop progressed, I felt myself opening up more and more. Nothing was off limit in this workshop though I personally was aware of culturally sensitive issues (perhaps due to what I’ve learnt over the years from Rashmi). Respect and confidentiality were adhered to. The live captions, I am sure, helped everyone keep up with the debate and as always, the chat function was fully utilised.”
During the workshop, six proposals were presented to the group by different researchers, and the other participants gave feedback. The presentations were on a variety of topics, from fatigue management to techniques for delivering prognosis information to patients and families. Margaret continues:
“What was striking to me during the presentations was the notion that improvement isn’t always possible. This struck a chord – my uncle’s condition eventually proved too much for both of us. Until that point, rehabilitation had played its part, allowing him to remain in his own home. But onwards, he would be living in a local care home which was a shock to both of us. Lack of mobility, and inability to restore it, had been overriding factors.”
Dealing with conditions and symptoms that are life-changing can be very taxing for both patients and families. The workshop also provides a space where participants can speak openly about their experiences and have an impact upon future research and provision of care. Rashmi reflected:
“All participants were able to discuss everyday challenges and respectfully heard. We all felt valued, and the researchers discussed how the research design and outcomes might be adapted to address the concerns raised.”
This format for respectful knowledge-sharing combines clinical knowledge with lived experience, and allows researchers to use the other attendees as a sounding-board for ideas in the early stages of development. This helps to develop research that identifies and addresses an existing challenge in clinical practice. Jo explained what she hoped to gain from the session:
“I attended the workshop to present and get early feedback on a research proposal to optimise mobility for people with life limiting illness. I also wanted to get inspiration and methodological insights from other research teams exploring rehabilitation in palliative care.”
Opportunities to obtain and implement feedback in the initial stages of a research proposal help academics to direct their work towards the most urgent and/or enduring problems in palliative rehabilitation, enabling them to come up with more effective interventions. Discussions with the group about the research question being addressed and their methodology are all important to this objective.
Margaret reflected on the difference that the workshop made, saying “There’s a lot to be focused upon and more work to be done. But I believe it can be achieved through productive partnership working.” Rashmi also described how early involvement of public members helps to demystify the research process, making participants aware of the impact they can have on palliative healthcare research through sharing their lived experiences, and feel more connected with others:
“The workshop helped me understand how research studies are designed and meaningfully delivered, and I was assured by the research team they will keep us informed on the research study applications as they are prepared. I wanted to ensure voices of diverse communities on existing palliative and end of life care services was being heard: this was respectfully taken on board and considered. Hearing the experiences and challenges of other members of the public also made me feel a little assured that I was not alone in my experiences, and was not isolated in trying to manage everyday health and care challenges.” (Rashmi)
Although the workshop attendees have diverse sets of knowledge and experience, collaborative working and openness to new ideas are important for all participants. Jo explained the value of the workshop to her research project and her approach to palliative care research more generally:
“A joint workshop like this was really useful to be able to get views from a range of health professionals, members of the public and researchers at an early stage in our proposal development. As patients will access a range of clinical specialties as they approach the end of life, it was great that the researchers and public members came from a wider range of clinical specialties beyond specialist palliative care, including stroke and geriatric medicine. This expands the scope for palliative rehabilitation research and enables the research teams to learn from each other early in the development of their work.”
The workshop discussions led Jo to consider whether ‘core outcomes’ and measures should be identified by the partnership. If put in place, this would get all participants on the same page about what palliative rehabilitation is trying to achieve. Jo explained this would also “support future systematic reviews and meta-analysis investigating palliative rehabilitation interventions.” The group discussion revealed gaps in knowledge that could be remedied by guidelines or measurements to improve targeted interventions, and ensure that healthcare interventions achieve the outcomes they are intended for. Jo explained:
"The workshop has already influenced the research that we are planning. For example, we are anticipating that one of the outputs of this research will be a decision support tool to help clinical decision making. Those attending the workshop suggested that the decision support tool should centre on patients and their families: that maybe we need two: one for patients and families, and one for clinicians. The justification they provided was persuasive, and so we’re looking at how we can incorporate this into the design of the work.”
Researchers, clinicians and public members ultimately have a shared goal of improved care and outcomes for people with life-limiting illness and their families. This collaborative approach to early-stage development of new research has the potential to lead to development of new tools, insights, and ways of working that will strengthen our approach to rehabilitation in the context of advanced disease, and towards the end of life.
Following the workshop, Margaret told us that “It’s my view that the creative arts can be pivotal in giving patients some quality of life. I have recently began writing poetry. I’ve found it cathartic but at the same time, developing a new skill has been empowering.” She has very kindly shared with us a poem she wrote about her experience of the Palliative Rehabilitation Research Partnership workshop:
The palliative rehabilitation workshop was on 24th of May
Organised and facilitated so all could have their say
It was accumulation of an intense survey evaluation
Of scoring research questions on palliative rehabilitation
The workshop was timely and of a very diverse audience
It was open to all comments, there’d be little guidance
We were free to express whatever opinions we hold
It’d be interesting to see how the workshop would unfold
We learnt of the role of rehabilitation, particularly loss of function
It was clear we all had a shared interest and passion
To develop high quality research questions and discovery
Around the tricky issue of functional recovery
Cultural sensitivity was another consideration
Management of fatigue generated much deliberation
Under resourced and inadequate service provisions
Access to professionals, experts in multiple conditions.
It was clear that rehabilitation is a wide and complex field
And no doubt there is still more data yet to yield
Presentations were dynamic and so impressive
To academic detail, the audience was so receptive
We’d take away the info to digest and reconsider
About breathlessness, pain, frailty, there’s much to decipher
And also mapping and building the right breadth of skill
Deploying what’s available in order to fulfil
Acknowledging that improvement isn’t always a possibility
But optimal service models may increase feasibility
Margaret Ogden
For more information about the palliative rehabilitation research partnership, contact pall-rehab-partnership@kcl.ac.uk
This project is funded by the National Institute for Health and Care Research (NIHR; Award ID NIHR135171). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care. This blog was written as part of activities funded by the UKRI Participatory Research Fund.