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Working with carers and professionals to identify local priorities for end-of-life research

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Working with carers and professionals to identify local priorities for end-of-life research

Peter Mellor, a CLAHRC Greater Manchester Facilitator, blogs about how we’ve worked with family carers and healthcare professionals to set priorities in end-of-life care research.

For anyone unfamiliar with CLAHRC Greater Manchester, we’re a team of NHS and University of Manchester staff focused on delivering quality research and, perhaps most importantly, putting that research into practice to improve care across Greater Manchester. There’s often a large gap between research recommendations and what is delivered in the NHS, and our mission is to close that gap and make sure quality research is acted on. One strand of our work is the end-of-life (EoL) programme, which delivers and implements high-quality end-of-life research. Our programme lead, Professor Gunn Grande, has worked within cancer and palliative care research since 1992 and is currently in the Division of Nursing, Midwifery and Social Work at the University of Manchester. She has been instrumental in driving our EoL programme forward with the vision for our work “to support high quality end-of-life care in the community, prevent unnecessary hospital admissions and facilitate appropriate hospital discharges.” We’ve already delivered some fantastic work under this programme, but to continue to make a difference in Greater Manchester we needed to prioritise the research based on local needs. We achieved this through our priority setting for end-of-life care research project.

Why did we decide to approach research priorities in this way?
The national research priorities from the Palliative and end of life care Priority Setting Partnership (PeolcPSP) gave us a great starting point for EoL research priorities in Greater Manchester. It was important for us to work from the national priorities to understand which had particular relevance to people and services in our area. We have a good understanding of EoL services and healthcare professional (HCP) perspectives across Greater Manchester through our earlier scoping work where we interviewed 29 HCPs. There were a number of key themes that came up time and time again in these interviews which then gave us an indication that six of the priority topics outlined within the PeolcPSP report appeared to have local relevance.

  1. 24-hour access to care.
  2. Planning EoL care in advance.
  3. Staff and carer education.
  4. Consistency/continuity of care.
  5. Care at home.
  6. Equal access for all.

These six topics were the focus of our conversations with local carers and HCPs.

How did we do it?
We brought together 32 clinical and senior managerial HCPs in EoL care for a half-day workshop to discuss their research priorities. The turnout was excellent as we had initially hoped for around 25 people to attend; but the most encouraging thing from my point of view was how engaged all of our participants were in the discussions. Ahead of the event we asked staff to select their two top priorities from our list of six, which they would discuss on the day. We also asked HCPs to suggest unanswered questions within their chosen topics that could be used as the basis for future research. We involved 26 family carers from across Greater Manchester by either attending a focus group (hosted by local carer groups) or an interview to discuss the six priority topics. When speaking to carers we invited discussion on the six topics but also let our carer conversations branch out into other areas that they felt were important in order to encourage discussion. Thanks to the support from our excellent carer groups we were able to speak to so many experienced and enthusiastic carers that we wouldn’t normally have had chance to work with.

Engagement and recruitment: Dos and don’ts


Ask senior staff to champion the work

One of the most important factors in making our priority setting event successful was the high-level involvement from senior HCPs from our partner organisations. We initially engaged with managers and service leads within EoL care who, once they had registered to attend our workshop, gave a useful way to encourage other staff within their service to attend. As a result we were able to involve key HCPs who we had not previously worked with. We also had a small group of six senior HCPs to form of our project advisory group, to increase interest and participation from within each of their respective organisations as well as contributing to the structure, content and outcomes of the HCP event.

Engage through previously established relationships
Since I joined CLAHRC two years ago we have made an effort to identify, engage, and work in collaboration with key EoL HCPs from across Greater Manchester. These professionals have provided valuable input into our EoL projects and, as a result, we have built strong and lasting relationships across multiple areas and organisations. Using these relationships as a base has been a key element in building our advisory group and increasing the numbers of highly engaged attendees at our priority setting event. Many professionals who we contacted, but who could not attend, have still expressed an interest in the work and have kept in touch with us through the project, asking for feedback and outcomes wherever possible.

Facilitate focused discussions for HCPs
Ahead of our priority setting event we realised that it would be too time-consuming to ask HCPs to discuss all six topics in enough detail to do them justice. As a result, despite many HCPs stating that all the topics were important to consider, we asked them to identify their top two priorities that they would discuss on the day. This method not only allowed us to identify where the priorities of our attendees lay but also we could facilitate more in-depth discussions and develop meaningful research questions for each of our priorities.

Utilise the knowledge and experience of carer group leads
Again, it was through the experience and knowledge of the staff, in this case local carer group leads, that we were able to have such strong carer engagement and participation throughout the project. The two focus groups we held were organised excellently by the group leads, who identified and engaged with carers who had experience and interest in EoL. The carers who came along to these two focus groups were key in creating a supportive atmosphere for each other to provide a safe place to discuss the emotional and personal end-of-life experiences.

Explore multiple avenues of recruitment
Rather than just using one method to encourage attendance and engagement from HCPs and carers, we tried to explore several different approaches. Earlier I discussed the use of our advisory group members, service leads and previous relationships to increase recruitment for the HCPs event. We also used multiple methods to reach out to local carers through carer groups, local hospices, patient-carer committees, website content, social media and newsletter advertisement; each method helped us identify and engage with at least a few carers who may have otherwise missed the chance to have their voices heard.

One of the most useful techniques for identifying new, appropriate HCPs for our workshop was utilising the insider knowledge of our participants relating to their own organisations. Asking attendees to identify and recruit additional HCPs or to pass on information about the event to those who might be interested was useful in further boosting our recruitment numbers.


Approach potential participants without a concrete plan
In the early stages of our recruitment, we communicated via newsletters and web stories asking for participation from carers. When these communications gave vague suggestions such as ‘please get in touch via email/phone’ there was often little response. The numbers were far greater when we invited them to specific focus groups on a set day and time, or where we recruited carers through patient and carer forum meetings and plans for face-to-face meetings to discuss the project were made. If possible, it is always better to have a clear, defined process through which people can get involved in a piece of work.

Be restrictive in the approach to carers
One of the major sticking points in our discussions with carers was that we initially asked them to use a data capture form to identify and rank which of the six topics they felt were most important. Whilst this approach was useful for HCPs, carers found it much more problematic - there was a feeling that all six of the topics were of such importance that choosing topics that were most important meant disregarding the others as insignificant. Due to the highly emotive topics and personal nature of the caring experience it is often best to allow conversations with carers to flow naturally rather than try to limit discussions based on what we as HCPs or researchers see as important.

Use unnecessary exercises or structures
In the first of our two carer focus groups we experimented with the use of an icebreaker exercise to stimulate conversation, but it was not at all well received. It seemed that the group were already well in tune with each other and were happy to speak to us about their experiences; by introducing this exercise we slowed down the flow of conversation and it seemed to make the carers less engaged; this type of exercise would be more appropriate and useful for a group who were unfamiliar with each other. The main message I took from this is that it is important to allow an established group to work in a way that works best for them, rather than imposing unnecessary structures or boundaries on discussions.

Pick a cold meeting room!
From the feedback we gathered after our HCPs workshop it was clear that our room was more than a little bit chilly for a February event. In the future we’ll try and avoid having our participants needing coats and scarves during discussions!

More information
For more information on our work to set priorities in research for end-of-life care, please read the full project evaluation report or the >easy-to-read summary. You can also read another blog> by Mike Spence (Programme Manager) and Rebecca Spencer (Project Manager) about whether a ‘one size fits all’ approach to care really works, and how our end-of-life work has looked at local needs. Please contact Rebecca Spencer, Project Manager, to speak with someone about this work.


Date Published: 06/10/2016