In this chapter, we describe how members of the public contributed to the project design and funding proposal, the conduct of the research programme, the study’s oversight and management, and development of resources, with suggestions for routes to impact. The study was advised throughout by the public involvement lead, a family carer, who shared:
This project has brought people with learning disabilities, family carers and paid support workers together as participants, whilst also providing an opportunity for people with lived experience to work as partners (that is public representatives). We have been involved from the start of this research – in the earliest conversations to shape the research proposal. We have been welcomed, encouraged and supported by the study team and made decisions across all five work packages at every stage in the research pathway.
Proposal development
The initial thinking behind the proposal and the development of the research questions were informed by PWLD and family carers. The Embolden project, a National Lottery-funded project lead by Oxfordshire Family Support Network (OxFSN) and involving the Co-PI and public involvement lead, focused on the experiences of older carers aged ≥ 70 years. The Embolden project highlighted systemic issues within the social care system to identify older family carers and anticipate and respond to their needs. This gap increased family carers’ anxiety and contributed to a care crisis for their family member with learning disabilities.
The development of the proposal also involved PWLD and family carers. One family carer and two self-advocates were co-applicants. Support was incorporated into the proposal to enable their meaningful involvement.
A family carer who also held a professional role with a national provider and a sibling carer who is also chief executive of SIBS (a charity for siblings of PWLD) were consulted about WP2; they commented on the needs of people with early dementia who are most likely to be living in the community, often with older carers, but whose caring support may become insufficient to enable them to remain at home or in supported accommodation.
Public Advisory Group and Study Steering Committee
To perform a function separate from but complementary to the Professional Advisory Group, we assembled a Public Advisory Group, which comprised four family carers and three self-advocates. The panel was chaired by the public involvement lead, who provided a template for the Public Advisory Group members and project team to each provide a one-page profile to enable everyone to better support each other. One member preferred the term ‘life enabler’ to ‘carer’; the difference was fundamental to that person and emphasised that good support is built on relationships with mutual respect.
After initial larger meetings involving all members, we changed to smaller meetings to make them more accessible.
The separate SSC involved an autistic member of the public who contributed to oversight meetings.
Greater Manchester Growing Older with Learning Disabilities
The GM GOLD group is a team of approximately 15 older PWLD and their supporters that was established in 2019 as part of a study to reduce social isolation among older PWLD in the Greater Manchester area. The team has been supported by Manchester Metropolitan University and other partner organisations since 2018. The study team drew on the experiences and perspectives of the GM GOLD members throughout. Relationships with families, the loss of family members and choice about where people live were important issues arising in the original GM GOLD research. The project was included as an agenda item at GM GOLD meetings across the project.
Researchers and co-researchers with learning disabilities
Participatory research has been key to the success of this study (see Chapters 4–6). Eight self-advocates trained to work as co-researchers on the WP3 ethnography alongside the public involvement lead.
Work package 4 was designed to be conducted with significant involvement by a researcher with learning disabilities, supported by an assistant researcher The WP4 team experienced multiple hurdles in obtaining institutional approval for the adjustments required for the appointment of a researcher with learning disabilities.136
Public training
Co-applicant training
Training in the value and importance of being public contributors, ethical issues and how to participate with confidence in research was provided by an experienced public contributor. This training provided a short introduction to the research world and emphasised that the public bring an essential perspective.
Key members of the study team attended online Easy Read training. Aside from being enjoyable as an initial team event, this training set the tone for communications across the whole study team and the length of the project. It is an outcome that the public involvement lead is particularly proud of.
Co-researcher training
Co-researchers were trained through a bespoke course developed through a related NIHR School for Primary Care Research-funded grant (see Chapter 4).
To prepare for WP4 data collection, four video-conference training sessions on conducting online interviews and focus groups with PWLD were attended by three self-advocate team members and three PWLD who were graduates of a previous research training course.
Public involvement throughout the study
The public involvement lead introduced changes to the organisation and delivery of the project. This included introducing the use of an illustrated Easy Read orientation slide at the start of meetings to remind members what the project was about, what month we were at in the timeline, and which WPs we were focusing on at the meeting. Presentations and key information were presented visually. As the project progressed researchers presented their reports in a more accessible way using photos, drawings, and plain language/Easy Read. By the mid-point of the study, the public involvement lead considered that she was able to ‘think in Easy Read’, a skill that benefited materials she produced in other contexts. The project logo had artwork produced by a person with learning disabilities ().
‘Growing older, planning ahead’ Twitter feed with logo.
We held additional meetings with individual members if they requested them or if we felt there was not enough time at the previous meeting for the member to be fully involved. This was made easier by the use of online meetings due to COVID-19 restrictions. We realised that meeting minutes required high levels of reading and processing skills, and we introduced and circulated minutes as an audio file, which consisted of a more conversational and accessible chat about the meeting content. This format was appreciated by members of the wider team.
Recruitment of staff
Co-applicants with learning disabilities were on the interview panel for project researchers. Public representation on these panels provided insights into candidates’ abilities to communicate with family carers and PWLD. Candidates were asked to consider how they would fully include family carers and PWLD in the study. This was vital when deciding who would be best placed to work on the project.
Work package 1: rapid literature reviews
The public involvement lead commented on draft protocols for the first two reviews. Given the paucity of published research, the authors considered combining the two reviews when writing up the findings. The Public Advisory Group advised the authors to keep these separate to make it easier to communicate the key messages.
Work package 2: service mapping
The WP2 mapping exercise was explained to the Public Advisory Group. Members found the work interesting but were keen to learn of the perspectives of PWLD and family carers in WP3, which they thought would show what was excellent provision.
Work packages 3 and 4: case study ethnography and end-of-life care qualitative studies
The Public Advisory Group and GM GOLD team provided the study team with insights to help with the fieldwork. This included:
Advice on how people cope during difficult times, to help identify relevant issues for researchers, to inform the wording of interview questions and to explore how
PWLD might deal with challenging times.
Thoughts on what was important for the ethnography to look at such as work, holidays, activities, relationships, home décor, and belonging to self-advocacy groups.
Discussion about what is important for researchers to consider when they go into people’s homes. This included the possibility of being told to leave at any point in the fieldwork.
Discussion of issues around payment and practicalities of carrying out fieldwork.
The use of one-page personal profiles for researchers to give to participants ahead of fieldwork.
Ensuring participants had time to prepare and were given advance notice of what would be covered in interviews.
Thinking about formats in addition to the Talking Mats communication tool used in WP4.
The public involvement lead suggested that participants with learning disabilities should be encouraged to be supported by an advocate or close family member and that participants should be ‘checked in’ with afterwards.
Team members attended GM GOLD meetings. Co-researchers discussed how they felt about travelling to some of the more distant study sites and what support they would need to do this. The meetings also gave academic researchers and co-researchers opportunities to get to know each other.
The Public Advisory Group was instrumental in retaining a case study site which temporarily withdrew from the project because of COVID-19 pressures. The group advised the team to work with the provider, offering extra support to make it easier for them to take part in the research. The study site was retained.
Recruitment in WP4 stage 1 was challenging due to the very specific inclusion criteria. The public involvement lead participated in a recruitment video and snowballed recruitment materials through a carers’ organisation. The Public Advisory Group also encouraged us to revise the inclusion criteria for participation, which resulted in a change to the protocol and ethics approval and enabled additional perspectives to be included in the research.
The group contributed ideas on the format and design of the WP4 ‘Planning Ahead’ cards across the process of development, printing and evaluation.
Work package 5: co-production of resources and training materials
Public contributors played a central role in the three stakeholder groups, chairing the first two events and contributing across all three events. Some members of the Public Advisory Panel and GM GOLD team attended.
Public Advisory Group members contributed to the development of the two OpenLearn courses, notably through involvement in the expert panel format that was used for both courses and agreeing overarching themes and learning outcomes for the two courses. Feedback was provided on Easy Read materials for the stakeholder events and cascaded session plans.
The training resources for doing ethnography were used in a February 2023 event with organisations that work with PWLD across the UK, reviewing how quality checks of health and social care services by PWLD and family carers are conducted.
Public engagement and dissemination
Public team members provided comments on the Easy Read briefing sheets, press release and the project plain language summary, and co-authored a Care Management Matters article.94
Having co-researchers with learning disabilities led to several benefits for the research:
Initiating and opening up conversations: one
GM GOLD team member started talking with a participant about their experiences of using walking aids, a topic that the researcher would not have considered. Another team member started a conversation about video games that led to the participant being more engaged with the fieldwork.
One co-researcher knew people at one of the sites. This was useful in helping to gain access and people’s trust; however, the co-researcher (and probably participants) found it strange at first to ask people questions about things they already knew.
A WP4 participant asked the researcher with learning disabilities about his experiences of moving into a supported living setting, leading to a rich conversation.
Practicalities of challenges faced and lessons learnt
We recognised the need to be responsive and open to new ways of working with public contributors throughout the project. This was particularly important at the early stages of setting up ways of working. A 4 + 1 evaluation tool (a person-centred thinking tool) was used to analyse what was working and not working in the Public Advisory Group meetings to make them more accessible. This led to better ways of working together with changes to processes agreed with public contributors before implementation.
The public involvement lead spoke to WP4 researchers about the experience and value of public involvement in co-producing resources for family carers and health and social care professionals to use. Public members described how there were times when meetings moved at pace so that they did ‘more listening and less contributing’. They would have liked more face-to-face meetings, especially at the early stages of the project. Due to COVID-19, this was not possible, although more in-person work took place towards the end.
As the research was NIHR-funded we had access to the citizens’ benefits advice service, and four co-researchers were supported to individually attend a meeting to check that their benefits would not be affected. This was important to reassure the co-researchers. The project co-ordinator submitted the forms to the Department for Work and Pensions along with the initial invoice to reduce the administrative burden on co-researchers.
University systems for including and paying co-researchers were burdensome and inaccessible. Legal agreements were not in Easy Read and initially individual co-researchers were expected to provide their own indemnity insurance, which would have been expensive and complicated. After discussion this clause was removed and an Easy Read guide for co-researchers was developed. The university payment processes were also not accessible, involving online entry of bank details. Co-researchers were supported to set this up and project manager logged co-researcher hours, and produced and submitted the invoices on their behalf. There was some delay in getting contracts in place, which led to some delay in payment.
Communication methods were key to ensure that the research team engaged with the Public Advisory Group in accessible and appropriate ways. The practicalities of carrying out fieldwork with co-researchers, including travel, needed careful consideration. Occasionally fieldwork visits were arranged at short notice to fit around the needs of the sites, which was difficult for the co-researchers to manage, and sometimes visits were cancelled at short notice, which was disappointing.
Why public involvement is important in a study like this
The public involvement lead worked with the team to ensure that involvement was interwoven throughout the study rather than being a standalone activity, and, as a co-applicant, a member of the Professional Advisory Group and the chairperson of the Public Advisory Group, she was ideally placed to do this. For example, she critiqued and suggested amendments to the overall project video and produced an audio update posted on Twitter and Facebook that described the project aims and early findings to accompany an early interim report to the funder.
Public involvement was essential for the team to ensure the accessibility of study information, gain the trust of participants and acquire knowledge and understanding of specific issues of importance to PWLD. The team acquired insights into the lives of PWLD by working alongside them, for example, practicalities of travel, commitments and life experiences.
There was clear impact on others involved in the project. For example, co-researchers were introduced as colleagues at ethnography sites, which demonstrated to providers and staff members that they were important. This helps to shift the narrative from a deficit model and demonstrates how research can become a space in which people’s contributions are recognised, valued and shared. There was also a visible shift in the confidence, involvement, enjoyment and skills among public contributors (and researchers).
Finally, a public involvement lead can help to create sense of continuity over a long project by being visible at meetings and events. It is important this role is filled by a person with lived experience so that public contributors may more easily relate to them.
