Ann C. Macaulay

Uncovering the Benefits of Participatory Research: Implications of a Realist Review for Health Research and Practice

Context Participatory research (PR) is the co-construction of research through partnerships between researchers and people affected by and/or responsible for action on the issues under study. Evaluating the benefits of PR is challenging for a number of reasons: the research topics, methods, and study designs are heterogeneous; the extent of collaborative involvement may vary over the duration of a project and from one project to the next; and partnership activities may generate a complex array of both short- and long-term outcomes. Methods Our review team consisted of a collaboration among researchers and decision makers in public health, research funding, ethics review, and community-engaged scholarship. We identified, selected, and appraised a large-variety sample of primary studies describing PR partnerships, and in each stage, two team members independently reviewed and coded the literature. We used key realist review concepts (middle-range theory, demi-regularity, and context-mechanism-outcome configurations [CMO]) to analyze and synthesize the data, using the PR partnership as the main unit of analysis. Findings From 7,167 abstracts and 591 full-text papers, we distilled for synthesis a final sample of twenty-three PR partnerships described in 276 publications. The link between process and outcome in these partnerships was best explained using the middle-range theory of partnership synergy, which demonstrates how PR can (1) ensure culturally and logistically appropriate research, (2) enhance recruitment capacity, (3) generate professional capacity and competence in stakeholder groups, (4) result in productive conflicts followed by useful negotiation, (5) increase the quality of outputs and outcomes over time, (6) increase the sustainability of project goals beyond funded time frames and during gaps in external funding, and (7) create system changes and new unanticipated projects and activities. Negative examples illustrated why these outcomes were not a guaranteed product of PR partnerships but were contingent on key aspects of context. Conclusions We used a realist approach to embrace the heterogeneity and complexity of the PR literature. This theory-driven synthesis identified mechanisms by which PR may add value to the research process. Using the middle-range theory of partnership synergy, our review confirmed findings from previous PR reviews, documented and explained some negative outcomes, and generated new insights into the benefits of PR regarding conflicts and negotiation between stakeholders, program sustainability and advancement, unanticipated project activity, and the generation of systemic change.

Testing the reliability and efficiency of the pilot Mixed Methods Appraisal Tool (MMAT) for systematic mixed studies review

BACKGROUND Systematic literature reviews identify, select, appraise, and synthesize relevant literature on a particular topic. Typically, these reviews examine primary studies based on similar methods, e.g., experimental trials. In contrast, interest in a new form of review, known as mixed studies review (MSR), which includes qualitative, quantitative, and mixed methods studies, is growing. In MSRs, reviewers appraise studies that use different methods allowing them to obtain in-depth answers to complex research questions. However, appraising the quality of studies with different methods remains challenging. To facilitate systematic MSRs, a pilot Mixed Methods Appraisal Tool (MMAT) has been developed at McGill University (a checklist and a tutorial), which can be used to concurrently appraise the methodological quality of qualitative, quantitative, and mixed methods studies. OBJECTIVES The purpose of the present study is to test the reliability and efficiency of a pilot version of the MMAT. METHODS The Center for Participatory Research at McGill conducted a systematic MSR on the benefits of Participatory Research (PR). Thirty-two PR evaluation studies were appraised by two independent reviewers using the pilot MMAT. Among these, 11 (34%) involved nurses as researchers or research partners. Appraisal time was measured to assess efficiency. Inter-rater reliability was assessed by calculating a kappa statistic based on dichotomized responses for each criterion. An appraisal score was determined for each study, which allowed the calculation of an overall intra-class correlation. RESULTS On average, it took 14 min to appraise a study (excluding the initial reading of articles). Agreement between reviewers was moderate to perfect with regards to MMAT criteria, and substantial with respect to the overall quality score of appraised studies. CONCLUSION The MMAT is unique, thus the reliability of the pilot MMAT is promising, and encourages further development.

Implementing participatory intervention and research in communities: lessons from the Kahnawake Schools Diabetes Prevention Project in Canada

Community public health interventions based on citizen and community participation are increasingly discussed as promising avenues for the reduction of health inequalities and the promotion of social justice. However, very few authors have provided explicit principles and guidelines for planning and implementing such interventions, especially when they are linked with research. Traditional approaches to public health programming emphasise expert knowledge, advanced detailed planning, and the separation of research from intervention. Despite the usefulness of these approaches for evaluating targeted narrow-focused interventions, they may not be appropriate in community health promotion, especially in Aboriginal communities. Using the experience of the Kahnawake Schools Diabetes Prevention Project, in Canada, this paper elaborates four principles as basic components for an implementation model of community programmes. The principles are: (1) the integration of community people and researchers as equal partners in every phase of the project, (2) the structural and functional integration of the intervention and evaluation research components, (3) having a flexible agenda responsive to demands from the broader environment, and (4) the creation of a project that represents learning opportunities for all those involved. The emerging implementation model for community interventions, as exemplified by this project, is one that conceives a programme as a dynamic social space, the contours and vision of which are defined through an ongoing negotiation process.

A realist evaluation of community-based participatory research: partnership synergy, trust building and related ripple effects

BackgroundCommunity-Based Participatory Research (CBPR) is an approach in which researchers and community stakeholders form equitable partnerships to tackle issues related to community health improvement and knowledge production. Our 2012 realist review of CBPR outcomes reported long-term effects that were touched upon but not fully explained in the retained literature. To further explore such effects, interviews were conducted with academic and community partners of partnerships retained in the review. Realist methodology was used to increase the understanding of what supports partnership synergy in successful long-term CBPR partnerships, and to further document how equitable partnerships can result in numerous benefits including the sustainability of relationships, research and solutions.MethodsBuilding on our previous realist review of CBPR, we contacted the authors of longitudinal studies of academic-community partnerships retained in the review. Twenty-four participants (community members and researchers) from 11 partnerships were interviewed. Realist logic of analysis was used, involving middle-range theory, context-mechanism-outcome configuration (CMOcs) and the concept of the ‘ripple effect’.ResultsThe analysis supports the central importance of developing and strengthening partnership synergy through trust. The ripple effect concept in conjunction with CMOcs showed that a sense of trust amongst CBPR members was a prominent mechanism leading to partnership sustainability. This in turn resulted in population-level outcomes including: (a) sustaining collaborative efforts toward health improvement; (b) generating spin-off projects; and (c) achieving systemic transformations.ConclusionThese results add to other studies on improving the science of CBPR in partnerships with a high level of power-sharing and co-governance. Our results suggest sustaining CBPR and achieving unanticipated benefits likely depend on trust-related mechanisms and a continuing commitment to power-sharing. These findings have implications for building successful CBPR partnerships to address challenging public health problems and the complex assessment of outcomes.

Assessing the outcomes of participatory research: protocol for identifying, selecting, appraising and synthesizing the literature for realist review

BackgroundParticipatory Research (PR) entails the co-governance of research by academic researchers and end-users. End-users are those who are affected by issues under study (e.g., community groups or populations affected by illness), or those positioned to act on the knowledge generated by research (e.g., clinicians, community leaders, health managers, patients, and policy makers). Systematic reviews assessing the generalizable benefits of PR must address: the diversity of research topics, methods, and intervention designs that involve a PR approach; varying degrees of end-user involvement in research co-governance, both within and between projects; and the complexity of outcomes arising from long-term partnerships.MethodsWe addressed the above mentioned challenges by adapting realist review methodology to PR assessment, specifically by developing inductively-driven identification, selection, appraisal, and synthesis procedures. This approach allowed us to address the non-uniformity and complexity of the PR literature. Each stage of the review involved two independent reviewers and followed a reproducible, systematic coding and retention procedure. Retained studies were completed participatory health interventions, demonstrated high levels of participation by non-academic stakeholders (i.e., excluding studies in which end-users were not involved in co-governing throughout the stages of research) and contained detailed descriptions of the participatory process and context. Retained sets are being mapped and analyzed using realist review methods.ResultsThe librarian-guided search string yielded 7,167 citations. A total of 594 citations were retained after the identification process. Eighty-three papers remained after selection. Principle Investigators (PIs) were contacted to solicit all companion papers. Twenty-three sets of papers (23 PR studies), comprising 276 publications, passed appraisal and are being synthesized using realist review methods.DiscussionThe systematic and stage-based procedure addressed challenges to PR assessment and generated our robust understanding of complex and heterogeneous PR practices. To date, realist reviews have focussed on evaluations of relatively uniform interventions. In contrast our PR search yielded a wide diversity of partnerships and research topics. We therefore developed tools to achieve conceptual clarity on the PR field, as a beneficial precursor to our theoretically-driven synthesis using realist methods. Findings from the ongoing review will be provided in forthcoming publications.

Moving the Frontiers Forward: Incorporating Community-Based Participatory Research Into Practice-Based Research Networks

Practice-based research networks (PBRNs) were developed in North America more than 20 years ago to study the health and health care events that are common in everyday primary care practice.[1][1]–[3][2] During the past 2 decades, the numbers of PBRNs have increased, and they have made major

Practice-based Research is Community Engagement

Community engagement has become a major contributor to medical research during the past 10 years and is an essential component of the current National Institutes of Health (NIH) Roadmap and the Clinical and Translational Science Awards program.[1][1][,2][2] But, what is a community? And what

Assessing the benefits of participatory research: a rationale for a realist review

Participatory research (PR) experts believe that increased community and stakeholder participation in research augments program pertinence, quality, outcome, sustainability, uptake, and transferability. There is, however, a dearth of assessments and measurement tools to demonstrate the contribution of participation in health research and interventions. One systematic review of PR, conducted for the Agency for Health Research and Quality (AHRQ), provided no conclusive evidence concerning the benefits of community participation to enhance research and health outcomes. To overcome methodological gaps and barriers of the AHRQ review, we propose to conduct a systematic realist review, which can be understood as a theory-driven qualitative review capable of capturing the often complex, diffuse and obtuse evidence concerning participation. Reviewing how PR mechanisms and contextual factors mediate and moderate outcomes, the review will generate and test hypotheses (middle-range theories) conceptualizing the benefits of participation and will portray the manner and circumstances in which participation influences outcomes.

Anthropometric Characteristics of Mohawk Children Aged 6 to 11 Years: A Population Perspective

OBJECTIVE Recent studies have concluded that Native North American children have higher proportions of overweight and obesity than children from the general North American population. This study presents anthropometric data on a representative sample of children from the Mohawk Nation that can be used for comparison with other Native American populations. DESIGN This is a cross-sectional study comparing distributions of anthropometric characteristics of Mohawk children to the corresponding age and gender data from the Second National Health and Nutrition Examination Survey (NHANES II). Weight, height, triceps and subscapular skinfold thickness, and waist and hip circumferences were measured in 527 children. SUBJECTS/SETTING All children in grades 1 to 6 (aged 6 to 11 years) in the 3 elementary schools of 2 Mohawk communities in Canada, for whom parental consent was obtained, were enrolled in the present study. There were no exclusion criteria. With a participation rate of 83%, the 527 children enrolled in this study represent an unbiased sample of the population from 2 Mohawk territories. RESULTS Compared with children studied in NHANES II, Mohawk children were similar in height and triceps skinfolds but were generally heavier, had thicker subscapular skinfolds, and had greater waist and hip circumferences. These differences were greater in older children. Mohawk children who had extreme-high weight values compared with their population means were heavier than their NHANES II counterparts. APPLICATIONS/CONCLUSIONS Results indicated that, on average, Mohawk children seem to be slightly heavier than children in NHANES II. Except for those with extreme overweight values, Mohawk children show less variation of weight and body mass index than children in NHANES II. Finally, overweight Mohawk children seem to be more likely to carry their excess body fat truncally, compared with overweight children from NHANES II. Health practitioners working with Native American populations should be careful when assessing childhood obesity. Simple comparisons of weight or body mass index with NHANES standards may lead to inappropriate risk assessments.

Diabetes Management in Canada: Baseline Results of the Group Practice Diabetes Management Study

ABSTRACT BACKGROUND There exists a considerable gap between best practice as rec-ommended by diabetes guidelines and actual practice. The objective of this study was to determine the level of care being provided to patients with type 2 diabetes by family physicians in group practices in 4 regions of Canada. METHODS Baseline characteristics from a cluster-randomized trial using chart audits were recorded to assess glycemic control and rates of physician adherence to guidelines-recommended practice. Intracluster correlation coefficients (ICCs) were calculated using the physician practice as the cluster. RESULTS Fifty-six physicians in 16 group practices provided 549 charts. Glycosylated hemoglobin (A1C) was measured in 71.8% of patients (mean: 7.7%). A total of 82.3% received antihyperglycemic medication, but only 35.3% achieved an A1C INTERPRETATION Despite high rates of screening for glycemia and macrovascu-lar complications, treatment was not sufficiently intensive for most patients. Family physicians performed poorly in microvascular complication screening.