Jane Springett

Towards a methodology for cluster searching to provide conceptual and contextual “richness” for systematic reviews of complex interventions: case study (CLUSTER)

BackgroundSystematic review methodologies can be harnessed to help researchers to understand and explain how complex interventions may work. Typically, when reviewing complex interventions, a review team will seek to understand the theories that underpin an intervention and the specific context for that intervention. A single published report from a research project does not typically contain this required level of detail. A review team may find it more useful to examine a “study cluster”; a group of related papers that explore and explain various features of a single project and thus supply necessary detail relating to theory and/or context.We sought to conduct a preliminary investigation, from a single case study review, of techniques required to identify a cluster of related research reports, to document the yield from such methods, and to outline a systematic methodology for cluster searching.MethodsIn a systematic review of community engagement we identified a relevant project – the Gay Men’s Task Force. From a single “key pearl citation” we conducted a series of related searches to find contextually or theoretically proximate documents. We followed up Citations, traced Lead authors, identified Unpublished materials, searched Google Scholar, tracked Theories, undertook ancestry searching for Early examples and followed up Related projects (embodied in the CLUSTER mnemonic).ResultsOur structured, formalised procedure for cluster searching identified useful reports that are not typically identified from topic-based searches on bibliographic databases. Items previously rejected by an initial sift were subsequently found to inform our understanding of underpinning theory (for example Diffusion of Innovations Theory), context or both. Relevant material included book chapters, a Web-based process evaluation, and peer reviewed reports of projects sharing a common ancestry. We used these reports to understand the context for the intervention and to explore explanations for its relative lack of success. Additional data helped us to challenge simplistic assumptions on the homogeneity of the target population.ConclusionsA single case study suggests the potential utility of cluster searching, particularly for reviews that depend on an understanding of context, e.g. realist synthesis. The methodology is transparent, explicit and reproducible. There is no reason to believe that cluster searching is not generalizable to other review topics. Further research should examine the contribution of the methodology beyond improved yield, to the final synthesis and interpretation, possibly by utilizing qualitative sensitivity analysis.

How stakeholder participation can contribute to systematic reviews of complex interventions.

Although patient and public involvement in research is a requirement for research funding in many countries, the knowledge base for how to effectively involve people—and evidence of the effectiveness of involvement—is weak. This article describes how methods used in participatory health research were used to involve patients, clients, providers and community health workers across all stages of a realist review. Sustained involvement enabled better identification of the components of the complex intervention of community-based peer support. It also challenged assumptions of how peer support is constructed, leading the review team to question whether the process of designing and implementing interventions has more influence on effectiveness than previously recognised in empirical studies. We conclude with a discussion on when sustained involvement should be used, and the challenges of incorporating it into the traditional researcher-led approach to systematic reviews.

Youth-Guided Youth Engagement: Participatory Action Research (PAR) With High-Risk, Marginalized Youth

Engaging youth who live with high-risk, marginalized conditions presents a significant challenge in our society, considering the prevalence of disconnect and distrust they often experience within their social environments/systems. Yet, meaningful youth engagement is a key concept not only for youth development, but also for a systems change to more effectively support high-risk youth and families. This article presents a framework of youth engagement developed over 9 months, using participatory action research (PAR) with 16 youth leaders in a community-based research team. Although this framework has incorporated the youth leaders’ lived experiences, talents, and voices, positive youth development (PYD) and social justice youth development (SJYD) have theoretically contextualized our research. Youth leaders guided the frameworks development, including the identification of key themes/dimensions, definitions, and practical examples. The frameworks three components—“Basis” (philosophy and principles), “What” (goals/outcomes), and “How” (actions/processes/pathways to change)—are supported by nine themes described in this article.

Impact in participatory health research: what can we learn from research on participatory evaluation?

Abstract Participatory Health Research is a collective term adopted globally for participatory action research in a health context. As an approach to research, it challenges current ways used within the health sciences to measure research impact as research, learning and action are integrated throughout the research process and dependent on context and participation. The literature on participatory evaluation is explored to see if it can offer some insights into how best to articulate impact. Similar debates are taking place particularly concerning the relationship between degree of participation and impact, how impact should be defined and the role of wider social forces on the evaluation process. A focus on core values, such as social justice, differentiates transformative evaluation from more pragmatic participatory evaluation, but this is poorly conceptualised in evaluation models.

What Is Participatory Health Research

Participatory health research is practiced in many countries around the world, drawing from different traditions which are based in various cultures and time periods. In spite of the wide variation in theory and practice, the different traditions show remarkable similarities. This chapter identifies 11 common principles based on the first position paper of the International Collaboration for Participatory Health Research (ICPHR). References to publications from various countries serve to illustrate each of the 11 criteria.

Searching for the Impact of Participation in Health and Health Research: Challenges and Methods

Internationally, the interest in involving patients and the public in designing and delivering health interventions and researching their effectiveness is increasing. Several systematic reviews of participation in health research have recently been completed, which note a number of challenges in documenting the impact of participation. Challenges include working across stakeholders with different understandings of participation and levels of experience in reviewing; comparing heterogeneous populations and contexts; configuring findings from often thin descriptions of participation in academic papers; and dealing with different definitions of impact. This paper aims to advance methods for systematically reviewing the impact of participation in health research, drawing on recent systematic review guidance. Practical examples for dealing with issues at each stage of a review are provided based on recent experience. Recommendations for improving primary research on participation in health are offered and key points to consider during the review are summarised.

Cycling- Exercise or trying to stop pollution: Methods to explore children's agency in health and climate change

The media have framed obesity and climate change as problems the next generation will inherit. The two issues have overlapping causative factors and temporalities, and share pre-emptive approaches, focusing on children. The aim of our study was to develop an approach to explore childrens perceptions of the interconnectedness of health and climate that avoids creating anxiety or apathy. Drawing on research with 10- and 11-year-old children living in urban areas, we reflect on our development of methods devised to engage children to talk about issues linking climate change and health, specifically their opportunities to participate in activities such as cycling or walking to school. Children were variously given photographic prompts, asked to draw and write about their thoughts and feelings, draw maps of their route to school, and create posters. We found that these methods enabled children to actively engage with climate change issues, evidencing individual and collective agency both in group work and their understandings of the possibilities of their own present and future role in low carbon healthy lifestyles.

Building Consensus, Celebrating Diversity: The International Collaboration for Participatory Health Research

This chapter will serve as an introduction to the work of the International Collaboration for Participatory Health Research (ICPHR). This will include a brief history, the structure and goals, a description of the membership, a description of the accomplishments to date, and a description of the current areas of focus. Reference will be made to other chapters in order to make explicit the link between the ICPHR and the themes of the book.

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 of 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.

The impact on anxiety and depression of a whole school approach to health promotion: evidence from a Canadian comprehensive school health (CSH) initiative

Abstract In this paper, we examine the impact of adopting a comprehensive school health (CSH) approach on reducing anxiety and depression of school-age children. We use the data from 245 schools that received government funding support to adopt a CSH approach in order to build health promoting school environments in Alberta. Using a linear multi-level (hierarchical) model, we compare the average percentage of students with anxiety and depression across the schools that are in three different funding stages: pre-funded, actively-funded, and post-funded. Results show that, all else held constant, the schools that are in the actively-funded stage, relative to pre-funded schools have a lower percentage of students who suffer from anxiety and depression.