Developing guidance on co-producing research with family carers of people with learning disabilities

Co-production is increasingly emphasised as an important part of academic research. Patients and service users have long argued for a greater voice in shaping research and practice (Williams et al., 2020a, 2020b), and many funders now expect or require research to involve stakeholders. Yet, along with opportunities, co-production can be fraught with challenges and complexities that might deter some researchers and family carers. Not least among these challenges is that there is no universally accepted definition of co-production. Definitions typically emphasise that co-production involves meaningfully sharing power with non-academic stakeholders to produce and share knowledge as equal partners (NIHR, 2021; Williams et al., 2020a, 2020b). Whilst co-production is sometimes used synonymously with patient and public involvement (PPI), others differentiate co-production from PPI based on its emphasis on equally sharing power with partners and highlight co-production’s distinct and more radical historical origins (Williams et al., 2020a, 2020b).

Proponents of co-production in research present several arguments for its value. These include “technocratic” or “instrumental” arguments, for example that co-production might improve the methodological quality, acceptability or impact of research through ensuring that they reflect stakeholders’ views and expertise (Oliver et al., 2019; Williams et al., 2020a, 2020b). Others argue that co-production should be motivated by intrinsic ethical or political values such as the democratisation of knowledge production (Oliver et al., 2019; Williams et al., 2020a, 2020b). Both arguments are highly applicable to research with family carers of people with learning disabilities. Co-production may offer instrumental benefits through drawing upon family carers insights into everyday experiences and challenges, services and support and effective dissemination channels. Moreover, co-production can fulfil democratic rationales by ensuring that research is more reflective of the values and views of family carers and has an impact on real-world experiences.

However, in practice, co-production is not without criticism and challenges. Some argue that what is labelled as co-production is often merely tokenistic attempts by researchers to “rubber stamp” their preconceived ideas (Oliver et al., 2019). Others highlight practical costs associated with co-production, such as financial costs, time demands and the perceived potential to undermine the independence of academic research (Oliver et al., 2019). Others identify that democratic rationales for co-production depend upon diverse and representative co-production groups. However, in practice, it is challenging for small groups to adequately reflect the diversity of broader populations in terms of ethnicity, gender and socio-economic status. Moreover, greater experience can professionalise co-production groups in ways that mean they differ from those they represent (Chinn et al., 2024). Given these challenges, researchers and family carers may feel daunted by the process or practicalities of co-production and how to successfully integrate it into their research. It is therefore crucial that those engaging in co-produced research exchange learning and experiences to develop guidance and disseminate best practices.

Fortunately, valuable general guidance on co-production across different populations has been developed. NIHR (2021) outlines five key principles of co-production: sharing of power; including all perspectives and skills; respecting and valuing the knowledge of all those working together on the research; reciprocity; and building and maintaining relationships. In their review of 11 publications on what characterises “good” public involvement in health research, Liabo et al. (2020) identify five similar values: inclusivity; partnership; purposeful involvement; transparency; and valuing different kinds of knowledge. Liabo et al. (2020) also identify practical advice such as support to co-production partners, responsive and proactive communication and involvement throughout the research. This general guidance is informative because many of the principles for successful co-production are likely to apply across stakeholder groups. However, many groups also have unique characteristics that are vital to consider to facilitate successful co-production. For example, Bottomley et al. (2024) identify barriers to co-production with people with learning disabilities such as inaccessible information, as well as strategies to mitigate this. Similarly, there are a range of distinct barriers that may especially impact co-production with family carers of people with learning disabilities. Family carers have invaluable insights to contribute to research related to their own support needs and experiences, as advocates and experts in the care of their disabled family member and as people who are deeply impacted themselves by disability services and policies. However, co-production may be inaccessible to family carers due the many competing demands upon their time and the unpredictability of their circumstances due to changes in services or their family members’ health (McCann et al., 2012). Additionally, many family carers without learning disabilities may be hesitant about co-production due to their perceived “liminal” status in which they are profoundly affected by issues relating to the lives of people with learning disabilities but do not themselves have a learning disability (Runswick-Cole and Ryan, 2019). It is therefore important to carefully consider the unique opportunities and barriers to successful co-production with family carers of people with learning disabilities.

Given the potential benefits of co-production but challenges in its execution, the aim of this project was to co-produce guidance on co-producing research with family carers of people with learning disabilities. This paper describes the guidance development process, summarises the key recommendations and discusses future priorities for co-produced research with family carers of people with learning disabilities.

This guidance built upon the learning of researchers and family carers involved in several co-produced research projects in the UK. These projects serve as valuable illustrative case studies for how co-production can enrich family carer research.

Early Positive Approaches to Support (E-PAtS) is a group programme for family carers of young children with additional developmental needs that aims to support well-being, resilience, proactive service access and children’s development. E-PAtS was co-produced by family carers and researchers over a series of face-to-face workshops and writing rounds and is co-facilitated by a practitioner and family carer. After positive results from a feasibility randomised-controlled trial (RCT) and qualitative evaluation (Coulman et al., 2022; Gore et al., 2022), a full scale RCT of E-PAtS is currently underway (epats-study.com).

Positive Family Connections is a co-produced, positively-oriented family-systems programme for families of children aged 8–13 with learning disabilities, who are autistic or both (Griffin et al., 2023). The programme was created by a development group of five family carers and researchers and is delivered by family carer facilitators. So far, the programme has undergone a feasibility RCT and qualitative evaluation with positive results (Sutherland et al., 2024, 2025). Of particular importance, participants in the qualitative evaluation emphasised the ways in which family carer facilitators improved programme acceptability and enhanced peer support (Sutherland et al., 2025).

After identifying a need for family focussed workshops about behaviour of people with learning disabilities, the Challenging Behaviour Foundation brought together a co-production group of family carers and researchers to develop and design the materials (CBF, 2024). The workshops are then also co-facilitated by practitioners and family carers and aim to equip family carers and professionals with an understanding of severe learning disability, behaviour that challenges and behaviour support.

Healthy Parent Carers (HPC) is a co-produced group-based programme that aims to improve family carers’ health and well-being. The programme is delivered by family carers and involves group-based activities, discussions and health-related information. So far, HPC has been evaluated through a feasibility RCT (Bjornstad et al., 2021), process evaluation (Lloyd et al., 2021) and implementation study (Garrood et al., 2023), with the process evaluation highlighting the acceptability and value of delivery by peer facilitators.

The Support for Parents and Carers in England (SPaCE) project also demonstrates how co-production can enhance research beyond the development and evaluation of support programmes. SPaCE is an ongoing project aiming to examine the prevalence of mental health problems among family carers as well as pathways for identification and treatment. In this project thus far, family carers have worked as equal partners in the research team to co-produce the study, including the research questions, data collection tools, qualitative analysis, academic papers (in preparation) and a bid for a future study.

These projects illustrate the potential for co-production to enhance research with family carers of people with learning disabilities. In particular, there is a growing evidence base for the feasibility and potential effectiveness of co-produced support programmes and the beneficial role of delivery or co-delivery of support programmes by trained family carers (Gore et al., 2022; Lloyd et al., 2021; Sutherland et al., 2025).

Sixteen individuals from these projects worked to develop the guidance on co-producing research with family carers of people with learning disabilities. This included ten family carers (seven mothers and three fathers) and seven researchers (including one researcher who is also a family carer). Whilst we recognise that our team cannot be fully representative of the views of all family carers, we deliberately included family carers of different ethnicities, single as well as dual-parent households and who were parents of children with varying support needs.

The development group first met in February 2024 and began by agreeing ground rules for the co-production process such as the importance of respect, confidentiality and allowing one another time to speak. We mutually agreed the scope of the project, such as the focus on co-production in research rather than service contexts and split into smaller mixed groups of researchers and family carers to discuss views on what topics would be important to include in the guidance before agreeing topics to cover as a whole group.

This first meeting also involved discussing what we mean by co-production in research with family carers of people with a learning disability. We reviewed several existing definitions of co-production before agreeing to develop a bespoke one. In particular, group members thought it important that the definition clearly differentiated co-production from other forms of PPI. Over subsequent months, through iterative feedback and revisions, we agreed upon the following definition focussed on co-production with family carers in research:

Several features of this definition of co-production are worth noting. Firstly, it retains the emphasis on power sharing throughout all stages of a research project that many existing definitions identify as core characteristics of co-production (NIHR, 2021; Williams et al., 2020a, 2020b). However, it also foregrounds the translational goals of research to lead to meaningful impacts for people with learning disabilities and their families.

Following the initial meeting, the next stage involved smaller working groups preparing drafts of specific areas of guidance. Group members expressed preferences for topics before being allocated to working groups that each included family carers and researchers. These working groups met and corresponded over two months to prepare initial recommendations.

During this period, we also agreed to prepare two separate guidance documents aimed at researchers and family carers. The initial intention had been to produce one document that was appropriate and accessible for everybody. However, the development group agreed that the different information needs of the two groups, and in particular, the value of a very brief document for family carers answering practical questions, meant that two documents were more suitable.

We then developed the outputs from the working groups into guidance documents for family carers and researchers. Initial drafts were iteratively revised over three development group meetings and intervening correspondence and editing. This included substantially revising the structure of the guidance to revolve around the Seven Golden Rules, which we identified as vital for successful co-production.

Co-production involves treating family carers as equal partners in a research project. Family carers should be regarded as important team members whose voices are respected, rather than as an optional add-on. Working together as peers should be reflected in a variety of ways, including appropriate credit and authorship (where family carers want this), involving family carers in senior positions and resolving disagreements fairly.

Co-production should ideally be embedded from the early stages of a research project to allow family carers to shape key decisions. It must be more than a tokenistic, tick-box exercise and requires authentically valuing family carers’ views such that they meaningfully influence the course of research. Meaningful involvement can bring enormous practical and personal benefits to researchers and family carers and so, should be mutually rewarding to all involved.

Researchers and family carers should welcome others’ contributions with openness and curiosity, including where these are critical. Engaging with critiques can be particularly valuable opportunities for co-production to constructively address issues with a research project. This does not mean that the views of either family carers or researchers should outweigh those of others. Rather, it means being willing to engage in open dialogue and to have clear and transparent procedures for resolving disagreements.

Clear communication is essential for successful co-production with family carers. Family carers will have varying amounts of previous involvement in research and are frequently balancing many competing commitments and responsibilities. It is therefore important that researchers provide them with clear information about their role, the time commitment required and deadlines. We recommend preparing clear and mutually agreed outlines of family carers’ roles and who they can approach for support. It is also crucial that researchers keep communication free from academic jargon and communicate through channels that suit family carers.

Family carers should be recompensed fairly for the time and expertise they provide. Payment should also be prompt, account for all work and out-of-pocket expenses, include replacement care costs where this is required and offer different options for how payment is made. Family carers should also be reminded that payment, including vouchers, may have implications for any welfare and tax payments.

Researchers must be mindful of the well-being of family carers throughout their collaboration. Co-production will often involve discussion of topics that are deeply personal, emotive or potentially distressing to family carers and appropriate support should therefore be in place. This includes emphasising that family carers may share as much or as little as they wish, interacting with family carers empathetically and offering debriefs or follow-up support.

Flexibility is critical to making co-production accessible to many family carers. Many family carers are “time-poor” and may have to respond to unexpected, last-minute demands. Researchers can therefore facilitate involvement through offering different input methods, catch-up sessions and varying degrees of involvement for family carers with different amounts of time. Different family carers may ultimately need different things, and researchers should be willing to explore reasonable adaptations that can be made to allow people to contribute.

As part of the evaluation of the project, we conducted two qualitative interviews with family carers who were involved in developing the guidance. These interviews did not undergo formal qualitative analysis but their responses, along with input from the rest of the team, have shaped the following reflections.

The team was informed by members from multiple research projects and thus the combined learning from a range of successes and challenges. Interviewed family carers highlighted that the nature of the project demanded that the development process reflected meaningful and rigorous co-production throughout:

This meant that family carers were involved in the project from beginning to end, shaped key decisions and described being treated like peers:

Other ways in which meaningful co-production was reflected was through meetings being co-chaired by two parent carers (one who is also a researcher and one who is a charity CEO) and by flexibly allowing family carers who were involved to draw upon their additional skills and experience. For example, family carers with experience in marketing, editing and graphic design were able to valuably contribute these to the project.

There were also several challenges to the development process. Synthesising many different perspectives is vital for what makes co-production valuable but also presents practical difficulties. These include the time required to coordinate many peoples’ involvement, and also, with more voices, greater difficulty for individual team members to predict how a project will evolve:

However, this challenge was partially mitigated by the flexibility included in the funding application to allow for the project to evolve in response to co-production input and the fact that we had included a contingency fund to allow for unpredictable costs as plans changed.

Another significant challenge was the tight timeline. This sometimes was in tension with the aspiration towards flexibility that good co-production requires. For example, sometimes, we ideally would have been able to offer longer periods to provide feedback on drafts. However, we worked hard to maximise flexibility and sensitivity whilst meeting these demands:

A third challenge was the tension between depth and accessibility. We rapidly found that guidance which comprehensively addressed the relevant issues and complexities might be inaccessible and unwieldy – especially for family carers who were unfamiliar with research. We therefore worked hard to balance brevity with detail and produce more accessible guidance for family carers. This process was guided by family carers’ views on what information was most important to include, stripping it down to key information and moving additional details that some family carers’ might find helpful into appendices, so it remained accessible where needed whilst reducing the length of the core document:

Family carers described hoping that the guidance would increase enthusiasm for and interest in co-producing research on the part of both researchers and family carers by highlighting its potential value:

In particular, they highlighted the importance of increasing the diversity of voices involved in co-produced research:

Lastly, they also described hoping that, through enhancing research, the guidance could ultimately translate into positive impacts for people with developmental disabilities.

The full guidance for researchers and family carers can be viewed at Link to warwickLink to the Website. From the launch of the guidance in June 2024 to December 2024, the website has been visited 1,068 times, the guidance read 95 times on ResearchGate and the guidance was presented at the 17th World Congress of The International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSIDD) alongside other co-produced research. Since then, we have continued to disseminate the guidance through social media and presentations.

Despite the potential value of co-production, we recognise that this may often be hindered by funding, institutional and systemic barriers beyond individual researchers’ control. For example, funding cycles means that often many aspects of research projects have been decided before obtaining money with which to pay family carers for co-production input. Organisational procedures for paying family carers may be burdensome and inflexible or present barriers to involving family carers as co-applicants on projects. These are difficult challenges that require researchers and family carers to communicate the importance of co-production and the barriers to it to funders, policy makers and organisational leaders.

Secondly, as we have discussed in this project, the time demands and unpredictability family carers experience can be a substantial barrier to involvement. Many therefore simply do not feel they have capacity to engage in co-production. It is therefore crucial that researchers, funders and institutions work wherever they can to minimise administrative burden, provide flexibility and make co-production more accessible.

We are continuing to look to build upon the learning about co-production that is reflected in this guidance. We hope that these can be live documents that evolve with future work and experience and are therefore keen to connect with researchers and family carers engaging with co-production in this field. The first author (Griffin) has started a new role at the University of Birmingham with a focus on co-production in research and will continue the work between researchers and family carers in this field.

There is also a greater need for evaluation of co-production processes to understand whether it achieves its purported aims, how it does this and in what kinds of research. Despite its widespread adoption and arguments for its benefits, proponents and critics alike have commented on the lack of a rigorous evidence-base evaluating the outcomes of co-production in research (Oliver et al., 2019; Voorberg et al., 2015). Greater attention to the evaluation of co-production outcomes could therefore refine understanding of what makes co-production successful or unsuccessful and inform improvements in its implementation. It should be noted that critiques of the evidence-base for co-production apply more directly to technocratic/instrumental motivations for co-production than democratic/political rationales (Williams et al., 2020a, 2020b). However, arguments for the instrumental benefits of co-production should be subjected to the same empirical scrutiny with which researchers should treat any other claim. Moreover, focusing on democratic rationales for co-production depends on efforts to ensure the diversity and representativeness of co-production partners, for example in terms of socio-economic status, ethnicity, gender and their child’s level of learning disability. Whilst this project deliberately drew upon the experience of those previously involved in co-produced research, in some projects, efforts to improve representation may require deliberately recruiting research-naïve family carers as well as those with previous experience to ensure a range of views and avoiding overreliance on more professionalised co-production input.

It is also important to emphasise that co-production with family carers should not be used in place of co-production with people with learning disabilities where the latter may be more appropriate. Who should be involved in co-production will depend upon the goals of each specific research project and should be carefully considered. Bottomley et al. (2024) have co-produced guidance on co-producing research ethics applications with people with learning disabilities. Some of their guidance, such as the importance of fair pay, parallels our own guidance and will be applicable to co-production across different groups. However, much of the guidance focuses on specific ways to make co-production accessible to people with learning disabilities and may be a valuable resource beyond ethics applications for informing co-production with people with learning disabilities more broadly. Similarly, previous guidance has provided helpful general recommendations for co-production across different populations (Liabo et al., 2020; NIHR, 2021). Many of the themes reflected in our own guidance parallel these recommendations – for example, the importance of positive personal relationships and valuing of different types of knowledge and perspectives. However, our guidance extends these by considering in more detail how they apply in the specific contexts of family carers of people with learning disabilities, such as the critical importance of time constraints and the unpredictability of many family carers circumstances.

Daniel Sutherland and Joanna Griffin both made equal contribution to this work.