Co-designing research on SEND-related provision with service providers and users: reflections on participants’ knowledge as experts of the studied field

Abstract

Local Authorities (LAs) in England provide what is called an online hub, a ‘Local Offer’, to inform young disabled people and their parents what is available in education, health, and social care for this group of traditionally marginalised people. By law, the LA must also offer an impartial, confidential and free service, called SENDIASS, to inform, advise and support parents about the ‘Local Offer’. However, the system is failing, and these young people and parents, who constitute a vulnerable and diverse population (e.g. young people and parents with autism, from diverse socioeconomic and cultural/linguistic backgrounds) are struggling to understand and navigate the system (DfE, 2022). Issues with the administration, design and digital delivery of services (e.g. website, emails, phoneline), as well as issues with LAs’ decision-making processes (e.g. regarding Education, Health and Care Plans (EHCP); AJC, 2023), mean parents and young people cannot always secure appropriate support. This has led to an increasing number of complaints and appeals (AJC, 2023).

To address this failure, we co-designed a large-scale research project with families with children with disabilities and personnel from SENDIASS, SEN services and LA digital developers to address this complex system at both an educational and conceptual level. In this methodological paper, we will discuss the contribution of research participants’ knowledge in co-designing this project which focused on the challenges of service providers and service users to improve and find SEND provision respectively. As Martin (2010) has indicated, there are different forms of participant involvement, and researchers need to align the form to a specific context. Brown (2021) has argued that the involvement of participants in designing participatory research needs to be seen in a continuum from minimally participatory to fully egalitarian, valuing, as Howard and Thomas-Hughes (2021) note, all contributions and knowledge types.

Although, there is a consensus of the value of participatory research and its positive impact on the social and academic worlds, there is currently a dearth of knowledge of how research can be designed with research participants, the role of participants, and the acquired learning for researchers (Slattery et al., 2020). Co-design and co-production are widely used in social science research but, as Chinn and Pelletier (2020) have noted, little empirical research explores the embodied practices of co-produced research projects. Similarly, in a rapid overview of reviews, Slattery et al. (2020) have found that the effectiveness of research co-design has rarely been described or evaluated in detail. In this paper, we aim to fill this gap by critically analyse the process of co-designing a research project on SEND-related provision with providers of SEND services and the service users. The main aim of this partnership was to submit a research proposal to a funder and to include the above participants in the study, if funded. Based on Slattery et al.’s (2020) proposal to provide better reporting of the co-design activities in a research study, our intention is to provide a clear description of the co-designed activities involved, and to add our experiences and reflections to other researchers’ experiences contributing towards a new tradition of sharing method stories as Hendriks et al. (2015) have suggested. Our intention is to critically evaluate the involvement of participants to respond to an overall lack of critical evaluation of the involvement of participants in recent literature, which emphasise usually the positives of the process, rather than critically appraising the contribution of their involvement (Littlechild et al., 2014). The main question that guides this evaluation is ‘What type of knowledge the participants offered in co-designing a research proposal, and how this knowledge contributed to enhancing the quality of the proposed project?

Methods:

Co-design belongs to participant-based research methodologies and constitutes a research approach that integrates participants’ perspectives in designing a research project as representatives of a larger group of stakeholders (Clark et al., 2022). It constitutes one of the first stages of co-producing work, when a range of methodologies are employed to do research ‘with’ community instead of ‘on’ community (Fraser-Barbour et al., 2023). In this paper, we will reflect on the benefits and challenges in co-designing a research project with ten parents from diverse cultural and linguistic backgrounds, and eight SENDIASS, SEN, and digital technologists from four LAs when funders’ deadlines, lack of training to build research capacity, insecurity of earning the grant, and other practical barriers hinder participants’ full involvement in designing research.

The co-designing process included the following elements: search for participants; negotiation for meaningful participation; first round of workshops to share and test ideas; analysis of participants’ knowledge contribution in the first round of workshop; and second round of workshops to finalise the research activities. The main aim of the first round of the two-hour workshops was to identify potential research and impact activities on how to improve SEND provision for families to include in the grant application. The research team created questions to enhance the dialogic element of the workshop, and through participants’ answers to co-design research activities. We recorded and transcribed all workshops which we later analysed thematically (Braun and Clarke, 2019). The main aim of the analysis was to understand what type of knowledge the participants contributed and to use the participants’ and the academics’ knowledge to translate research activities to fulfil the scope of co-designing a research proposal. After analysing the first workshops, the research team drafted a research project which included two main work packages and eight research activities. The main aim of the second round of workshops was to elicit participants’ feedback on the proposed research activities and to finalise the research proposal.

Conclusions, expected outcomes or findings:

By describing the co-designing process and reflecting on the decisions taken, we will highlight the role of participants as experts of the studied field, and how this role can be considered within the demanding funded research requirement. The power relations between researchers and participants and their priorities, the ethical considerations in designing research with vulnerable groups, and the type of knowledge the participants contributed to the research proposal to improve its design and impact will be also discussed. Participants’ knowledge contribution to the first round of workshops included the provision of information unknown to the research team, identification of appropriate sample, justification of activities proposed by the research team, and expansion of the scope of the project by proposing new activities. The participants’ knowledge contribution to the second round of workshops included concerns about the effectiveness and the impact of specific activities to diverse groups; gaps in the proposed sample; and concerns about the effectiveness of the practical outputs and their contribution.

We conclude that the involvement of participants in designing research projects as experts of the studied field is useful, when time restrictions, lack of training to build research capacity, and other practical barriers hinder their egalitarian participation in the design of a research project. We propose that the role of participants as experts in designing research projects, although not fully egalitarian, can provide a useful alternative in designing impactful projects for both academic and social worlds.
References

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Identifiers

ORCID for Vasilis Strogilos: orcid.org/0000-0003-1754-4306

ORCID for Ben Whitburn: orcid.org/0000-0003-3137-2803

ORCID for Sarah Lewthwaite: orcid.org/0000-0003-4480-3705

ORCID for Haiming Liu: orcid.org/0000-0002-0390-3657

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