Patient and public involvement

Patients and members of the public whose care is the subject of research are well placed to work with researchers to design and deliver the best possible research. Although PPI is becoming more widely accepted in palliative care research, challenges remain with involvement being sought from a vulnerable population, and a potential lack of confidence among researchers to undertake it.109,110 However, we integrated PPI in this study from development through to dissemination, incorporating co-production in some elements of the project. This chapter explains the work undertaken and highlights the important role that PPI played in the project.

The aim of patient and public involvement in this study

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In line with best practice, PPI informed and shaped the development stage, and contributed throughout the project and into dissemination. An advisory group was formed to support the development of the project for the grant application. Members were identified through Pilgrims Hospices and the University of Kent via links with existing PPI groups. The group consisted of four members, including two bereaved carers and two members of the public. The bereaved carers had previously had direct experience of HAH services as carers for patients receiving the service. The public members (one a hospice volunteer) had a keen interest in research and the work of the hospice.15 The group provided advice on project design, research questions, outcome measures and the lay summary for the funding application. Two PPI representatives became public co-applicants on the project. Involvement from bereaved carers was key, as carers were the main participants in the study, providing proxies for the views and experiences of patients who were at the end of life.

The project’s public co-applicants were active in every part of the research. During the course of the project, the public co-applicants worked in partnership with the research team on the following tasks:

• Designing the study materials, including information sheets, and study outputs, such as lay summaries, to disseminate the results to study participants and the wider public.
• Analysing and interpreting study results, including reading and coding qualitative interviews and contributing to the development of CMO configurations. One public co-applicant (GS) also attended quantitative analysis meetings, providing insight on the possible causation of significant results.

In previous experience, we had not found it possible to recruit and retain patient representatives in palliative care research over the course of research projects, owing to their ill-health, but we aimed to consult with palliative care patients during this project. This was possible through links with the local hospice, Pilgrims Hospices; a consultation with patients attending day services was undertaken.

Patient and public involvement methods

The public co-applicants on the project increased the breadth of experience, knowledge and skills within the research team.111 This added value to the project, particularly as it was a realist evaluation, whereby different perspectives contribute to theory generation and interpretation of the data. More broadly, being integral members of the research team ensured that the project was iteratively informed by the end-beneficiary perspective.

Facilitation of patient and public involvement in the project

All members of the research team worked with the public co-applicants, but a hospice research facilitator (CBr) had a dedicated role on the team to co-ordinate their involvement and provide support. The support was tailored to the individual needs of the public co-applicants, and included the following: partnership approaches to developing roles and expectations within the project; an introduction to understanding the research and governance approaches; and preparation and support for research meetings, for qualitative analysis in the case study phase and for facilitation in the consensus phase.

Charlotte Brigden also provided administration support relating to public co-applicant travel, accommodation, expenses and payments. The public co-applicants were paid for their time on the project and out-of-pocket expenses, in line with guidance from INVOLVE.112 Honorary researcher contracts with the University of Kent were issued to them. For the ‘one-off’ PPI consultation via the Pilgrims Hospices with service users, carers and volunteers, a £10 voucher was provided as a token of thanks for their time and input, and travel expenses were offered.

Training for the public co-applicants was provided by the Centre for Health Services Studies, University of Kent, which had an existing PPI support programme. This included tailored training to support them with the analysis and interpretation of the qualitative interviews, including coding of these interviews. Additional training was provided on realist evaluation methodology and the concept of CMO configurations by experts on the research team at the beginning of the project and again during the analysis phase. A realist evaluation lay guide was produced for the public co-applicants as an additional support tool (see Appendix 6, including Table 28).

Effect of patient and public involvement on the study

In this section, detailed examples demonstrate how PPI and co-production were incorporated into the project through each phase.

Phase 1: survey of hospice at home services

The public co-applicants were part of the research team, interpreting and discussing the findings from the survey at a consensus meeting. This enabled co-production by a process of joint decision-making, which included the following:

• The development of the model typologies.
• The selection of the shortlist of potential case study sites for phase 2 of the study. The public co-applicants encouraged and supported the inclusion of mixed populations in diverse areas (e.g. including services from the north and south of the country, rural and urban areas, and deprived and affluent areas).

Phase 2: in-depth case studies

Patient and public involvement activities included advising on public-facing study documents so that they were ready to submit for Health Research Authority governance and ethics approval, such as participant information sheets and data collection forms. They also provided insight into appropriate processes and procedures for approaching patients and carers.

As patients with capacity were invited to participate, feedback on a patient version of the participant information sheet was also sought from current hospice patients through day-care services, and local HAH service staff were also consulted. This input resulted in the following:

• Improvement of the language and content of the documents to make them more accessible and understandable to potential participants.
• Advice about when and how to follow up potential participants.
• The suggestion that a flyer should be designed to give out to potential participants in advance. The concept was to introduce the research to patients and carers prior to them accessing HAH services. Then, if they became eligible for inclusion, when it may be a more difficult and sensitive time to ask, they would already be aware of the research and more likely to be able to consider participating. The public co-applicants provided further feedback on the detailed content of the flyer when it was produced (see Report Supplementary Material 2).

A co-production approach evolved as the project progressed through each phase. Co-production takes PPI one step further to an approach in which researchers, practitioners and the public work together, sharing power and responsibility, including the generation of new knowledge.113

One public co-applicant described this process:

At the outset, our role was far less hands-on, but as the project progressed, we wanted, and felt more confident, to be more actively involved. To facilitate this, specific training was arranged to make this possible. The team too had to be very accommodating to our frequent presence at meetings.

Examples of co-production in phase 2 between the researchers and public co-applicants included working on the following:

• The processes and procedures for data collection from carers using the questionnaire tools (i.e. the QODD and the AHCR).
• The recruitment procedures for the study, how and when to approach potential participants to complete the questionnaire tools.
• How to approach the follow-up of carer participants when researchers were having difficulties contacting them (e.g. three attempts was enough).
• Input on the decision-making on the timing of data collection after a loved one had died (e.g. 4 months seemed too long, 6 weeks about right, or sooner if it was the carer’s wish).
• Interpretation and discussion of the quantitative data from carers (i.e. the QODD and the AHCR).
• Development of the qualitative interview topic guide.
• Feedback on the qualitative interview coding framework.
• Iteratively analysing and discussing the interview data from service provider, commissioner and carer interviews (public co-applicants helped code carer interviews). This work was used to modify and develop the CMO configurations.

The public co-applicants in particular contributed to the interpretation of:

• the relationships between carers and HAH service and other care professionals
• the changing relationship between carer and patient as the illness progressed and needs were greater
• how the care was negotiated, how much the carer accepted taking on/carrying on versus wanting or seeking outside support
• models of service support available to the carer and patient, including volunteers
• the importance of, and threats to, continuity of the care offered
• the importance of what HAH services offered that was different (e.g. ‘time to care’, not ‘task orientated’, not just the length of time but the ‘pace’, ‘presence in the moment’), while still doing what was needed and filling the gaps in care.

In addition, in phase 2, the public co-applicants recommended that a newsletter be provided for all the participating project sites, ensuring that those services were kept informed of project progress.

Phase 3: consensus meetings

The final phase of work involved stakeholder consensus and feedback on the emerging results. Targeted advertising flyers for the events were designed for professional and public audiences and the public co-applicants advised on content, language and design/layout.

Each of the consensus event workshops focused on an emergent CMO, two of which were ‘support directed at the carer’ and ‘volunteers’. In preparation for these workshops, discussion groups were undertaken with a local group of volunteers and carers identified through Pilgrims Hospices. One public co-applicant (GS) helped to design and facilitate the groups, which took place on 25 November 2019. The groups covered topics on access to services and co-ordination of care, bereavement support and involvement of volunteers. When direct experience was lacking, Graham Silsbury was able to tease out some responses ‘in theory’ on what attendees thought would be good care in relation to the emergent themes of the CMO configurations. Knowing who to call and being responsive when needed, particularly OOH, were the main areas of concern for the carers.

The volunteers’ group generally saw that there could be a role for volunteers in HAH services, but more for befriending-type services, rather than personal care or even bereavement, which they felt should be the domain of the professionals. They felt that having structure and support as a volunteer, with reporting/communication mechanisms in the organisation, was preferable to being more autonomous in their volunteering roles.

Co-production continued in the consensus phase of the project. Examples of co-production in this phase of the project included the following:

• the most relevant discussion groups for the consensus events were planned and facilitated collaboratively between Charlotte Brigden, Graham Silsbury and Mary Goodwin
• the planning and organisation of the consensus events were agreed collaboratively between the researchers and the public co-applicants
• co-facilitation of some of the workshops/sessions at the consensus events (e.g. the ‘supporting carers’ workshop, the speed-dating poster session and the ‘so now you know’ session on ideas for project outputs and dissemination).

The feedback from the consensus events was synthesised by the research team, including the public co-applicants, which validated and provided further support for the CMO configurations.

Project outputs and dissemination

The public co-applicants were consulted during the writing of the lay summary for this report. For broader dissemination, the public co-applicants have helped with ideas to summarise and present the findings of the project in a way that is more easily accessible to service users and members of the public. Further advice on outputs for different audiences was gathered at the consensus events, with significant contributions from the public attendees.

Poster and oral presentations of the co-production work and the roles that the public co-applicants had on the project have been disseminated at regional and national conferences. The public co-applicants helped with the content and design of a poster114 and one public co-applicant co-presented with the research facilitator at a regional London/South East co-production conference, showcasing OPEL as an example of co-production in action in health research.115 The public co-applicants have also been given opportunities to comment on other outputs from the project, for example a journal article, for which they have been included in the authorship.22

Assessing impact

To provide feedback to our public co-applicants and assess the impact of PPI in the OPEL study, we used guidance produced in the East of England, led by the University of Hertfordshire.116,117 An impact form was completed after every activity involving PPI. The information in the feedback forms was collated into flow charts, which were shared with the public co-applicants at the end of each project year (see Appendix 7).

The summary flow charts also acted as prompts for the public co-applicants to provide their own feedback at a dedicated session at the end of each project year. These sessions worked well when run at a time separate to the more formal project meetings at the university; for example, at the end of year 1 of the project, Charlotte Brigden and Claire Butler arranged to meet the public co-applicants in a local pub. This provided a more informal environment that enabled open discussion about how they had found the activities so far and how they would like to be involved in the future. At this meeting, we realised that they would like to be more aware of what was happening with the study day to day, not just those things specifically related to their PPI activities. As a result, they subsequently attended monthly project management meetings. It was also a good time to explain and discuss the case study phase of the research (phase 2) and establish what activities they would be happy to be involved in.

Feedback sessions were also organised so that the wider research team was included, for example a post-meeting afternoon tea at the end of year 2. At this meeting, it emerged that one public co-applicant was finding the coding of the interviews challenging, and we suggested alternative ways to contribute and provide interpretation of the interviews through summarised feedback. They also found that the coding felt quite isolating, as they wanted to be able to cross-check with others. Furthermore, they highlighted the contextual importance of listening to the interview alongside reading the transcript. A session was then arranged for the two public co-applicants to listen to some interviews.

Discussion and conclusions

Patient and public involvement (and co-production) have positively affected each stage of the OPEL study. Having two public representatives as co-applicants on the project, equally and fully part of the research team, as well as having a dedicated PPI facilitator, helped to enable their continuous involvement with the study. One public co-applicant highlighted the importance of the role of a dedicated PPI facilitator:

Although the whole team were welcoming, supportive and valued our input, the facilitator role was pivotal in creating a closer working relationship that was always available. It made it easier to discuss personal concerns about potential limitations on our input or areas of uncertainty.

Other learning from the PPI experiences in this project included the importance of responding to individual PPI preferences and differing degrees of involvement, for example one public co-applicant very much enjoyed detailed coding of transcripts, whereas another preferred to have the audio file of the interview to listen to and to ‘tell the story’. These different approaches added richness to the analysis.

Reflections/critical perspective

The challenges of PPI in the context of palliative care109,110 were arguably easier to overcome in the OPEL study as the main PPI representatives were bereaved carers/those with experience of caring at the end of life, as opposed to patients and carers currently in receipt of services. However, as they were recalling their own experiences as carers, we had to be mindful of any unintended effects and offer and provide support to them as needed.

We felt that our approach was fitting, as bereaved carers were the main participants in the research and we did try to address different perspectives by reaching out to consult with patients and others for elements of the study when appropriate. The absence of views and experiences of ethnic minorities in the research has been a limitation; involving a more diverse population as PPI representatives, as well as research participants, could be considered in future projects.

Recommendations for facilitating PPI in future studies:

• There is a need to be flexible, responding to and respecting the different needs of the PPI representatives. It should not be assumed that the needs will be the same for all PPI representatives involved for the same activities/tasks. The degree of involvement of each does not have to be identical.
• Having some informal ‘space’ or time away from the project activities/meetings to discuss how PPI is working with PPI representatives is valuable. This should be conducted alongside regular recording of PPI impact and careful feedback.
• Having a dedicated PPI facilitator role in the research team enriched and facilitated the PPI contribution throughout the project. It is important that the person in this role has an understanding of the research and is up to date with project activities, particularly if they are not directly involved as a project researcher.
• Having the PPI representatives as project co-applicants helped to establish them as equal members of the project team. However, this is not enough on its own, and it is important to ensure that they feel included, as other members of the team are, in the day-to-day running of the project.
• Developing relationships and building the team is work in itself and does not happen automatically. For this project, the realist evaluation method helped to foster the co-production, which evolved over time.
• There would be benefit in being able to involve patients and the public from ethnic minority groups who are interested in health-care research and would be willing to be PPI representatives. This would help to ensure that their views and experiences are taken into account in future research.

These points are by no means unique to this study; similar findings have been expressed elsewhere.118

Summary

Patient and public involvement, through a range of different approaches, made important contributions to all elements of the study, and, in some areas, developed into full co-production. PPI input was well suited to realist evaluation, which is interested in engaging the views of a range of stakeholders at each stage, from selection of initial programme theories and the interpretation of the data collected to testing these propositions and their further refinement as CMO configurations.