Framework, principles and recommendations for utilising participatory methodologies in the co-creation and evaluation of public health interventions

Background: Due to the chronic disease burden on society, there is a need for preventive public health interventions to stimulate society towards a healthier lifestyle. To deal with the complex variability between individual lifestyles and settings, collaborating with end-users to develop interventions tailored to their unique circumstances has been suggested as a potential way to improve effectiveness and adherence. Co-creation of public health interventions using participatory methodologies has shown promise but lacks a framework to make this process systematic. The aim of this paper was to identify and set key principles and recommendations for systematically applying participatory methodologies to co-create and evaluate public health interventions. Methods: These principles and recommendations were derived using an iterative reflection process, combining key learning from published literature in addition to critical reflection on three case studies conducted by research groups in three European institutions, all of whom have expertise in co-creating public health interventions using different participatory methodologies. Results: Key principles and recommendations for using participatory methodologies in public health intervention co-creation are presented for the stages of: Planning (framing the aim of the study and identifying the appropriate sampling strategy); Conducting (defining the procedure, in addition to manifesting ownership); Evaluating (the process and the effectiveness) and Reporting (providing guidelines to report the findings). Three scaling models are proposed to demonstrate how to scale locally developed interventions to a population level. Conclusions: These recommendations aim to facilitate public health intervention co-creation and evaluation utilising participatory methodologies by ensuring the process is systematic and reproducible

‘I actually know that things will get better’:The many pathways to resilience of LGBTQIA+ youth in out-of-home care

Research on the lives of lesbian, gay, bisexual, transgender, queer, intersex, asexual and other forms of sexual identities and orientations (LGBTQIA+) youth in care has mainly examined their experiences from a risk-based approach, while few studies have explored their resilience experiences. Using in-depth interviews, the present study aims to illuminate the resilience experiences of 13 LGBTQIA+ young people in out-of-home care in the Netherlands. Four themes emerged from their narratives: relationships that support and empower; construction of a positive identity around their sexual orientation and gender identity and expression (SOGIE); community involvement and self-relying strategies. Our findings support the view of resilience as a complex process that shows at an individual, interpersonal and social level

Participant-guided mobile methods

Health research is increasingly concerned with tackling health inequalities and inequities. Given that poorer health outcomes are often experienced by those who are suffering a degree of socially, economically, or environmentally determined disadvantage, it is incumbent on us as researchers to include the views and voices of diverse and sometimes marginalized or vulnerable population groups. Challenges which may accompany this imperative include engaging so-called hard-to-reach populations, and addressing an imbalance of power that often occurs between researcher and participant. Participant-guided mobile methods are one strategy for rebalancing this power differential when undertaking qualitative research. In this chapter, we describe the method and several case study examples where the authors have used it. We also discuss the types of research questions for which it is particularly well-suited along with its benefits and its challenges. When compared with a more traditional face-to-face interview, participant-guided mobile methods allow participants more power and control over the interview process. In addition, the method can yield observational and visual data as well as interview data, and is useful for including children and other participants who may be less articulate or lack proficiency in the language of the interviewer as it provides opportunities to “show” as well as “tell.

Reviewing the effectiveness of participatory health research: challenges and possible solutions

Participation in health research is becoming more important as health systems are challenged to contain costs in the face of ageing populations and increased demand for support with chronic and long-term conditions. Partnership working, community engagement and participation in the process of designing research and delivering health interventions are now a major focus for funders, requiring high-quality evaluations of effectiveness. Systematic reviews of these initiatives indicate that they are effective, but providing explanations for how and why participation works is difficult due to thin reporting of the process. This chapter outlines the challenges of conducting reviews of participation in health research, including how to assemble an experienced review team, construct definitions of participation and impact and locate good information on participation in health research. Solutions for reviewing participation are presented, based on international guidance for systematic reviews and practical experiences of conducting reviews on participation and community engagement

Inclusive research and inclusive education: why connecting them makes sense for teachers’ and learners’ democratic development of education

Following pushes from the disability movement(s) and increased interest in children and young people becoming involved in research concerning them, inclusive research is growing within and beyond education establishments. Yet this arena is alive with interesting and largely unanswered questions. This paper discusses some of them: What do inclusive research and inclusive education have in common? Where have the moves towards inclusive (participatory and emancipatory) research happened and why? How viable are the claims to the moral superiority of inclusive research? What kinds and quality of knowledge does inclusive research produce? Finally the question is addressed of what all this means for inclusive education, arguing that inclusive research has under-explored potential to reinvigorate inclusive education and provide new connections to democracy and social justice in education

Demonstrating Impact in Participatory Health Research

Internationally there is a move towards improving the impact of research by going beyond knowledge collection to bridging the gap between knowledge and action. Participatory health research (PHR) is an approach to research that blends the boundaries between research, knowledge and action through participation. This chapter will specifically focus on some of the challenges and opportunities in demonstrating impact in PHR. We begin by presenting three essential dimensions of impact in PHR, a reflection of ongoing discussions among members of the International Collaboration for Participatory Health Research (ICPHR). Second, we outline some of the challenges and opportunities in demonstrating the impact PHR in the health sciences along with examples from practice. Finally, we outline future opportunities for demonstrating the impact of PHR by describing a new internationally-led project called the interactive Knowledge Base (iKB). The iKB aims to map the relationship between participation and impact, the scope of impacts that can be expected, and how these impacts manifest in different contexts of health research. This new project will help researchers and funders of health research to appropriately communicate and evaluate the impact of PHR through the development of this systematic and dynamic evidence base