Introduction
Increasing attention is being paid to coproduction—the involvement of potential end users in the design, delivery and evaluation of interventions—in the field of global health and medicine.1 The new National Institute for Health Research and UK Medical Research Council framework for developing and evaluating complex interventions highlight the importance of coproduction.2 Proponents suggest coproduction helps produce interventions that are more beneficial to end users,3 have improved impacts on health and well-being,4 are more ethical5 6 and are better able to reduce research waste.7 While coproduction can take time and substantial investment,8 it is now recognised as essential to the development of effective and sustainable interventions in health research.9
Coproduction is situated within a long legacy of interest in user involvement and participation in public health, public administration and international development, spanning decades.10 The term encapsulates a range of processes linked to codesign, cocreation and coevaluation, and different strands of debate have led to some murkiness around what actually counts as coproduction. On the one hand, coproduction is seen as the substantial involvement of citizens in public health decision making,1 while on the other, it is a transformative revisioning of how to conduct health research with marginalised groups.11 Whatever manifestation coproduction takes in practice, power inequities in voice, position and representation often pose a significant challenge to the equality of all parties involved in the process.12 13
In this article, we focus on the codevelopment of complex health interventions as a subset of coproduction. While detailed guidance does exist on developing partnerships with key stakeholder and service providers,14 how to develop a programme theory of change15 16 and steps for developing high-quality interventions,17 less attention has been paid to methods for collaboratively developing interventions in partnership with potential end users or the ‘how to’ of codevelopment as patient and public engagement in intervention design.18 The majority of attention has been on establishing key principles rather than developing specific methods and tools,19 20 critiquing the way interventions have been designed21 22 or conceptualising participation in research more broadly.23–25 As a result, a sizeable gap remains in the specific methods that can, and in some cases, should be used for doing codevelopment effectively.
To help address this gap, we argue for clear and explicit engagement in the methodological decision-making processes surrounding the codevelopment of interventions for complex social problems, such as the prevention of violence against women and girls, human trafficking, HIV and AIDS, and mental health in postconflict settings.26–28 The codevelopment process would not be exactly the same for these different interventions; however, an open methodological discussion about what works and what does not work can help generate new ideas for the practice of codeveloping complex interventions to improve health outcomes.
This methodological discussion is urgently needed for a number of reasons. While not the goal of all complex interventions, significant challenges exist in ensuring the meaningful engagement of potential end users in interventions that claim to be codeveloped. The extent to which power and control are shared with participants as part of intervention development is at best inconsistent and at worst superficial.29 Potential end users may be involved in intervention development as a member of the committee or research board but do not have any actual claim over how the research is being carried out.21 25 This type of superficial codevelopment is not neutral, but actually risks reproducing rather than challenging existing power inequalities in research relationships.11 30 Moreover, groups who are already socially and structurally marginalised tend to bear the burden of superficial codevelopment, including young people,28 31 those living with HIV/AIDS32 and women experiencing intimate partner violence (IPV).32 33
Despite a handful of thought-provoking efforts to describe case studies of codevelopment practice,11–13 23 the absence of a broader discussion has left a number of important questions unanswered, particularly around what is needed to codevelop better and more effective interventions. For instance, how does one avoid replicating and, where possible, challenge existing power hierarchies in research or overcome historical epistemic injustices? How can we find a balance between often competing perspectives such as end users’ lived experiences and the worldview of the researchers and perspectives gleaned from published literature? What methods can we use to ensure programme theories of change are grounded in end users’ experiences? We approach these questions from a critical public health perspective that draws attention to how structural inequalities shape and define social practices34 and use this to explore codevelopment as a social practice that is intimately intertwined with existing hierarchies of power and privilege.
To accomplish this aim, this article draws on our specific experience codeveloping an intervention to address the syndemics of IPV, HIV, mental health and harmful alcohol use affecting young people living in urban informal settlements in South Africa.35 We reflect on our experiences as part of this project and draw broader lessons for the field of global public health. The need to address the broader structural inequalities that underpin many of the challenges faced by young people in this context has been a tension throughout the project. Some of our strategies to overcome these challenges have succeeded, while others have failed. We discuss specific examples and summarise the methodological insights (ie, the theoretical assumption that underpin our selection and use of particular methods) for coproducing interventions in global health.
The project: Siyaphambili Youth
Siyaphambili Youth (‘Youth Moving Forward’) is a 3-year research project aimed at addressing the social contextual factors that create a syndemic of high rates of IPV, HIV and poor mental health among young people living in informal settlements in KwaZulu-Natal (KZN) province in South Africa. The project is a partnership between the South African Medical Research Council (SAMRC), a South Africa non-governmental organisation (NGO) called Project Empower (PE), University College London (UCL) and a team of 17 young peer research assistants (YPRAs) living in urban informal settlements and rural communities in KZN. The principal investigators, coinvestigators and research staff from SAMRC, PE and UCL are referred to jointly as the ‘research team’ throughout this article as a means of discussing the relationship between the research team and the YPRAs as a central focus.
YPRAs were recruited to the project through an iterative hiring process designed to maximise possibilities for vulnerable youth to participate. Preliminary selection criteria included youth who were not currently in school or formal work, and were between 18 and 29 years old. The majority of those recruited had completed grade 12 but had not gone on to higher education. Three had stopped education after grade 11, and one had only completed grade 8. An informal introduction to the project was held in both rural and urban locations, in addition to proactive recruitment of young men by approaching them in places where they were seen to congregate. The project responsibilities, ethical considerations and payment terms were discussed in detail over the course of several days with potential YPRAs before they were asked to give their consent and were officially hired by PE. Following this process, five urban women, four urban men, four rural women and four rural men joined the Siyaphambili Youth Project as YPRAs.
Since November 2020, the YPRAs have participated in four phases of development of an intervention (figure 1). The first phase focused on understanding the syndemics of HIV, IPV and poor mental health risks (ie, how social contexts create overlapping risks characterised by poverty, violence, mental health vulnerabilities and gender inequalities), and young people’s agency in the face of such risks. YPRAs individually took photographs representing their daily lives (referred to as ‘artefacts’) and participated in in-depth interviews to discuss their meanings. In the second phase, YPRAs were involved in a series of workshops where they drew on their personal experiences to develop fictional characters, which were then used for facilitated discussions on young people’s daily lives.
The third phase built on the previous two phases to develop a theory of change for the intervention. YPRAs did this by identifying risk and protective factors for HIV and IPV as part of a problem tree participatory workshop activity. They were asked to visualise risk factors for HIV and IPV including the underlying causes (tree roots), the more proximal causes such as behaviours (tree trunk) and the effects on young people’s lives (tree branches). A similar tree was created for the ‘solutions’ or actions that YPRAs thought would prevent HIV and IPV. As part of this process, the research team shared analyses from other research activities conducted as part of the project with the YPRAs (ie, a quantitative analysis on alcohol use in similar communities, and qualitative analysis of artefact interviews with YPRAs) to explore new ideas or alternative ways of seeing the problem and its potential solutions. YPRAs were then asked to imagine an ideal world where the problems they had identified did not exist and to think of potential interventions that could help them to achieve this ideal world. During this activity, the YPRAs created visual maps outlining the problems, their intervention ideas and intended outcomes (ideal-world scenario). These maps were then shared with the broader research team to refine the intervention pathways based on existing evidence.
The fourth and final phase involved introducing the YPRAs to an evidence-based intervention to reduce HIV and IPV. The theory of change process pointed to the need for a gender transformative intervention with varying degrees of livelihood creation, mental health support and broader structural change for each of the four groups (men vs women and urban vs rural). We used the Stepping Stones and Creating Futures intervention,36 which has been shown to effectively reduce men’s perpetration of violence in the South African context,37 as a starting point. We adapted the original intervention to incorporate broader mental health support and to be more aligned with the theory of change developed with the YPRAs. The YPRAs were closely involved in adapting the overall content of the interventions and the individual activities to suit their context and unique needs as identified in the theory of change process.
Patient and public engagement
The form of codevelopment discussed in this article (ie, codeveloping an intervention with potential end users) is a form of patient and public engagement that aims to engage the public in the research process itself. The ‘public’ in the Siyaphambili Youth project were the 17 YPRAs who were integrally involved in all four phases of the intervention development process as mentioned. In addition, YPRAs were involved in other aspects of the study, including recruitment of participants from their peer groups for in-depth qualitative research on topics such as rioting, emotional dysregulation and sexual life histories.