Better Health For All

In our research into the oral health inequalities experienced by children in care and young care leavers we knew that we wanted to work collaboratively with children and young people (CYP) to produce the research. We wanted to give them the opportunity to be involved throughout the production process from concept to completion, helping to produce outcomes and services that are relevant and important to them. To support this, we conducted a rapid literature review (to be published Spring 2023) to learn from previous research on how to meaningful involve vulnerable CYP in research.

Co-approaches and participatory research

The terms co-creation, co-design and co-production are often used interchangeably and are ill-defined (1,2).

One study defined co-design as “meaningful end-user engagement in research design”, adding that it includes “instances of engagement that occur across all stages of the research process and range in intensity from relatively passive to highly active and involved.”

“Co-production” refers to much more than “meaningful end-user engagement”. It is committed to working in partnership to generate ideas, evidence and research outputs, recognising the importance and validity of different forms of knowledge. The UK National Institute for Health Research 5 key principles of co-production (3) are:

• Sharing power;
• Including all perspectives and skills;
• Respecting and valuing the knowledge of all those working together on the research;
• Reciprocity;
• Building and maintaining relationships; Joint understanding and consensus and clarity over roles and responsibilities.

“Participatory research” goes beyond this. It challenges the power dynamics between researchers and those with lived experience, seeking to democratise research and to question traditional ideas of knowledge and expertise.

Grindell (2) coined the term ‘co’approaches to encompass co-creation, co-design and co-production.

Taking a pragmatic approach

Given the lack of clarity around definitions, we took a pragmatic approach in the rapid review. We defined research ‘co’approaches with vulnerable CYP as “involvement of vulnerable CYP in an explicitly described role contributing to the planning and/or conduct of research”. We used the Children’s Commissioner for England (2017) definition of vulnerability to identify populations of interest (4). These include, those that have safeguarding concerns or are in state care, have health problems and/or disabilities, low income, have challenging family circumstances, are not engaged or excluded from education, are involved in offending or anti-social behaviour, have experience of abuse/exploitation or come from minority populations.

So, what did we learn that would be useful in using a co-approach in our research?

We learnt a lot about the challenges.

Some would apply to involving any child or young person in research, such as maintaining interest and motivation and fitting the research in with their other commitments such as school, work and social activities. Other challenges related specifically to the life circumstances of vulnerable CYP with examples such as childhood trauma, homelessness, poverty, addiction, parenting responsibilities and mental and physical health issues. In research which took an explicitly participatory approach, working with and accommodating the needs of vulnerable CYP called for support beyond that related to carrying out research to encompass aspects of their daily lives.

The need for flexibility and responsiveness to the varying needs and abilities of CYP to facilitate their meaningful involvement in the research has implications for time and budget. The fluidity of what can be a “messy” situation may not sit well with the needs of funders (4). It can also present challenges when trying to navigate the systems for obtaining ethical approval which call for detailed and explicit description of all processes (especially for work with vulnerable CYP). Other challenges concern academic researchers and their ability to engage with the CYP and to relinquish power.

Researchers in the studies we identified tended to write less about how to overcome the challenges. However, some key principles emerged.

There was a strong focus on “building trust” with CYP as co-researchers, especially where CYP may have a history of disappointing encounters with adults and authority. Making the research process interactive and task driven and, where possible, giving CYP the power to decide how to deliver the tasks helped maintain engagement and facilitated a collaborative approach. Identifying motivators, recognising the different skills and strengths of individual co-researchers and supporting them to learn new skills gave them the tools to collaborate on their terms. Team-building activities and regular meetings to support team bonding were an important feature of some studies. It is also important to formally acknowledge co-researchers’ contribution.

The findings from our review echo the 5 principles identified by NIHR (3) and highlight some of the practical hurdles faced in taking a ‘co’approach. We look forward to exploring how, informed by this review, we might work collaboratively together with children in care and care leavers to tackle oral health inequalities.

Authors:

Dr Jo Erwin¹, Post doctoral Research Fellow, Public Health Dentistry, Peninsula Dental School

Ms Lorna Burns¹, Lecturer in Evidence Based Healthcare – Information Specialist, Peninsula Dental School

Dr Nick Axford¹, Associate Professor in Health Services (Research), NIHR ARC South West Peninsula (PenARC)

Ms Sarah Kaddour², Inclusion Oral Health Fellow

Ms Jane Horrell¹, Research Fellow, Peninsula Dental Social Enterprise CiC, Peninsula Dental School

Prof Jill Shawe¹, Professor in Maternal and Family Health, School of Nursing and Midwifery

Dr Hannah Wheat¹, Senior Research Fellow in Dementia Research, Peninsula Medical School

Prof. Robert Witton¹, Professor of Community Dentistry, Chief Executive Peninsula Dental Social Enterprise CIC, Peninsula Dental School

Prof Paul Brocklehurst³, Professor of Health Services Research and the Director of NWORTH Clinical Trials Unit at Bangor University.

Dr Martha Paisi¹, Research Lead, Peninsula Dental Social Enterprise CiC, Peninsula Dental School; Senior Research Fellow, School of Nursing and Midwifery

¹ University of Plymouth; ² Pathway Charity ; ³ University of Bangor.

References:

1. Brandsen T, Honingh M. Distinguishing different types of coproduction: a conceptual analysis based on the classical definitions. Public Admin Rev. 2016; 76(3):427–435.

2. Grindell C, Coates E, Croot L, O’Cathain A. The use of co-production, co-design and co-creation to mobilise knowledge in the management of health conditions: a systematic review. BMC Health Serv Res. 2022; 22(1):877.

3. Hickey G, Brearley S, Coldham T, Denegri S, Green G, Staniszewska S, Tembo D, Torok K, and Turner K. (2018) Guidance on co-producing a research project. Southampton: INVOLVE.

4. Slattery P, Saeri AK, Bragge P. Research co-design in health: a rapid overview of reviews. Health Res Policy Syst. 2020;18(1):17.

Acknowledgments: This rapid review is part of a larger project “Dental care for children and adolescents in care- Caring for children and their smiles” funded by The Borrow Foundation (https://www.borrowfoundation.org/ ). Special thanks to members of our PPI and stakeholder groups who have reviewed this blog.

Dr Jo Erwin

February 2023