This section presents the main themes from the data, the impact and the financial cost of PCPI.
Motivation for PCPI
The majority of RUG members were motivated by altruism and chose to get involved with the aim that other carers would benefit from their experiences:
“Hopefully, trying to represent other carers and enable the caring process to make it a bit easier for everybody else, the same as that we've all had stumbling blocks along the way and barriers that we've come across where we haven't been able to do this or we've not had the right information. So, you know, hopefully we can enable other people to then go forward and have the process a bit easier” R3
There were some indicators from the RUG that they also hoped for personal benefits, such as establishing a support network with other carers. The RUG members at the end of the study had a clear idea of PCPI in research and reported that research about a certain population should include those affected to provide an authentic voice and to ensure the research included what was important to those individuals. The RUG had a clear sense of levels of involvement and awareness of more tokenistic engagement that sometimes occurs but reported feeling fully involved in OSCARSS and working in partnership with the researchers. There was certainly a feeling that researchers who had theoretical knowledge needed to understand what was important to those affected and this was a key part of the carers’ role:
“Yeah, stay away from the textbooks. And actually, speak to people that are dealing with the subject that you are researching on.” R5
The RUG expressed their view of the reciprocal nature of their role. They understood that ‘researchers’ in general could view PCPI as a hindrance but suggested that PCPI would ultimately enable the researchers to produce higher quality research:
“But at the end of the day, it's their name on the research, so they want to get the best out of it. When they put the papers up and present that, it's their name on the bottom of that, so they want it to be the best it can be. So, you know, it's them that's going to get the glory out of it, so they need to be able to do it the best they can. And if they feel that this works, then it doesn't matter how many times we change it, does it, as long as it gives the best evidence” R1
Motivation for researcher PCPI
The researchers taking the lead in RUG carer group engagement were the co-chief investigator (EP) and the project manager (KWN) and they felt well supported by the other co-chief investigator (AB). They had strong beliefs of the importance of PCPI in research, of involving those with lived experience of the topic under investigation at earliest possible moment in health research:
“We need to do health economics, so we would get a health economist because I don’t know about health economics, so we wanted to develop something to help carers and I don’t know about caring so let’s talk to carers, it’s so self-evident” R6
Value of PCPI to OSCARSS
The RUG reported a real sense of being involved in developing the research as equal partners with trust and belief between themselves and the researchers. This trust came from the researchers taking action when they said they would or explaining what barriers they faced if they couldn’t:
“for me, that gives it a sort of added dimension in a way that, like you say, it's not tokenism, it's actually there's been a process and a long term process where there's a relationship of trust, a relationship of understanding”R2
The RUG described having a sense that they had really made a difference to this research and a real pride in the work they carried out, and this explains the long term commitment that many of the RUG had staying involved throughout this study. Some planned to get involved for a few months and ended up staying involved for several years:
“I think initially if they said, you know, are you going to commit to this group for, like, four years or nearly four years, we'd all go no” R3
One of the key messages that came out of the RUG was that they felt a strength of the group was its diversity. They reported that there were people from a range of socio-economic backgrounds, ages, different carer relationships, different levels of education and job backgrounds and this helped them to offer a variety of perspectives. They did suggest that the inclusion of people from other cultural backgrounds could have enhanced the group to give another viewpoint:
“Because some cultures in this country are very community-orientated and some cultures are very isolated within each other. So whereby you will find a whole community will get behind one person to help them, the next person will be left completely to their own devices while everyone stands back and watches” R5
The researchers described the power of the PCPI input which they feel gives credibility to the research:
“There is huge leverage that the carers’ voice has … and we could use that as people really listen if the carers say this is really important. It just seems to elevate people’s respect for the project” R6
The opinion of the RUG was of real value when dealing with the potential challenge of participant recruitment when service providers act as ‘gatekeepers’, making judgements as to whether someone is invited to be a potential participant. Being able to confirm to those involved in recruitment that the RUG felt it was essential that potential participants were offered the choice, regardless of recruiters’ opinions, was helpful:
“ … and this was particularly the case when trying to change staff behaviour, when we said that our carer group felt [carers] should make that decision and people should be asked at this point” R7
PCPI activity and the value to the study is summarised in Table 1.
Personal impact
The RUG said they felt valued and listened to during their work on this study and this gave them a sense of real worth:
“We actually feel that we’ve been listened to rather than it’s gone through three or four different people, edited by each one and then there’s a resemblance of something that you’ve said. So, like I say you feel more valued”R5
The opportunities for many of the RUG to get involved in teaching at the University, running workshops and presentations at national and international conferences also reinforced this sense of having something to offer and feeling valued. Many of the RUG members found personal support from their membership of a group where others understood the pressures of being a carer and supported each other to understand the research process.
RUG members reported that occasional frustrations were related to the fact that research had to be done in a certain way, within the confines of the protocol and this could limit the changes they wished to make. For example, they had suggested further changes to the intervention tool, CSNAT, that could not be implemented due to copyright restrictions. The complexity of the research and the amount of information was challenging and could be overwhelming, but they report being well supported by the researchers in reducing jargon.
Some of the personal challenges related to the initial stages of getting to know the other members of the RUG, e.g. “introductions” meant describing their own personal circumstances. In some cases, members found this upsetting as they had to ‘re-live’ their story. Some of the members describe they have learnt to listen to others better and think about other peoples’ perspectives:
“I’ve realised that no, it might actually be the way that I’m thinking about it that’s the wrong bit, not the way that they’ve explained it. So, finding the common ground there; like I say, it’s just been a lot of life lessons for me as well”R5
The group reported that getting to know each other took time, everyone had a different style of interacting, some people liked to think and reflect and other members were more vocal. Despite the level of time commitment, RUG members always felt this was optional and any activities they were invited to participate in were always offered with no sense of expectation. The time commitment included the preparation before meetings, the meetings and the work outside of the meetings reading minutes and research documents as well as dissemination activities attending conferences.
The researchers involved approached the RUG with a positive view and a sense of empowering a group of people to have their voices heard. Researchers were conscious of the group dynamics and their potential position of power, which they attempted to offset by sharing their own personal experiences and understanding of caring.
Challenges
The researchers, with their embedded prior belief of the value of PCPI, felt that the benefits of this co-produced research with the RUG outweighed the challenges. However the researchers felt it was important to consider the personal challenges to their involvement. Managing group dynamics could be difficult, where people worked through information at different speeds which led to frustrations or managing individual styles if people were more or less vocal in the groups. Building the trust of the group, sharing difficult information and managing the emotions of all those involved in this process could be both draining and emotionally challenging particularly at the start when people shared their experiences:
“There were a lot of tears actually in that first meeting … it was very emotional in the first two meetings”R6
In terms of organisational challenges the researchers had access to funding for this PCPI. The total cost of PCPI reimbursement for time, mileage, catering, conference and other dissemination events but excluding the costs of staff time, came to a total of £5000. Staff costs were not included here because the project was funded within a major applied health research programme with an understanding that staff could take whatever time was needed to work with the RUG (https://clahrcprojects.co.uk/resources/clahrc/greater-manchester). This meant there were two or three research staff facilitating the meetings and sending out preparatory work which helped to support the group dynamics, responding to those needing more explanation or support:
“ … there were typically three of us in meetings, that’s very resource heavy isn’t it? One was taking notes, there might be two of us to manage communication and energies in the room … having the relationship between the people facilitating and the group was probably quite key to our success.” R6