Margaret Cargo

The Value and Challenges of Participatory Research: Strengthening Its Practice*‡

The increasing use of participatory research (PR) approaches to address pressing public health issues reflects PRs potential for bridging gaps between research and practice, addressing social and environmental justice and enabling people to gain control over determinants of their health. Our critical review of the PR literature culminates in the development of an integrative practice framework that features five essential domains and provides a structured process for developing and maintaining PR partnerships, designing and implementing PR efforts, and evaluating the intermediate and long-term outcomes of descriptive, etiological, and intervention PR studies. We review the empirical and nonempirical literature in the context of this practice framework to distill the key challenges and added value of PR. Advances to the practice of PR over the next decade will require establishing the effectiveness of PR in achieving health outcomes and linking PR practices, processes, and core elements to health outcomes.

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.

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.

Overweight and obese adolescents: what turns them off physical activity?

A systematic review of qualitative studies was undertaken to understand the barriers to physical activity experienced by adolescents who were overweight or obese. From a search of electronic databases and ‘grey’ literature, published between 1950 and 2009, 15 studies met the inclusion criteria. Bronfenbrenner’s model of human development provided an ecological lens for identifying and synthesising barriers to physical activity. Two reviewers appraised study quality. Miles and Huberman’s cross-case analysis was integrated with thematic networking to synthesize the individual, interpersonal and environmental level barriers for boys and girls of different ethnicities and socioeconomic status, across school settings and generalised context. Thirty-five barriers were identified, 13 of which occurred in physical activity situations in the school setting, 18 were not linked to a specific setting, and the remainder were common across both contexts. The fact that these barriers emerged from studies that focused on topics such as victimisation and mental health is particularly poignant and reflects the potentially pervasive influence of adolescent’s excessive weight not only in relation to physical activity situations but other aspects of their lives. Furthermore, socioeconomic status and ethnicity was poorly considered, with only one study linking these participant characteristics to quotations and discussing the potential implications. At present, there are few qualitative studies with sufficiently thick description or interpretive validity that provide insight into this vulnerable group of adolescents, and give them a voice to influence policy and practice.

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.

Prevalence of psychological distress and mental disorders, and use of mental health services in the epidemiological catchment area of Montreal South-West

BackgroundThis report presents the initial results of the first Epidemiological Catchment Area Study in mental health in Canada. Five neighbourhoods in the South-West sector of Montreal, with a population of 258,000, were under study. The objectives of the research program were: 1) to assess the prevalence and incidence of psychological distress, mental disorders, substance abuse, parasuicide, risky behaviour and quality of life; 2) to examine the links and interactions between individual determinants, neighbourhood ecology and mental health in each neighbourhood; 3) to identify the conditions facilitating the integration of individuals with mental health problems; 4) to analyse the impact of the social, economic and physical aspects of the neighbourhoods using a geographic information system. 5) to verify the adequacy of mental health services.MethodA longitudinal study in the form of a community survey was used, complemented by focused qualitative sub-studies. The longitudinal study included a randomly selected sample of 2,433 individuals between the ages of 15 and 65 in the first wave of data collection, and three other waves are projected. An overview of the methods is presented.ResultsThe prevalence of psychological distress, mental disorders and use of mental health services and their correlates are described for the first wave of data collection.ConclusionSeveral vulnerable groups and risk factors related to socio-demographic variables have been identified such as: gender, age, marital status, income, immigration and language. These results can be used to improve treatment services, prevention of mental disorders, and mental health promotion.

Application of Karasek's Demand/Control Model in a Canadian Occupational Setting Including Shift Workers During a Period of Reorganization and Downsizing

Purpose. To apply Karaseks Job Content Model to an analysis of the relationships between job type and perceived stress and stress behaviors in a large company during a period of reorganization and downsizing. Design. Cross-sectional mail-out, mail-back survey. Setting. A large Canadian telephone/telecommunications company. Subjects. Stratified random sample (stratified by job category) of 2200 out of 13,000 employees with a response rate of 48.8%. Measures. Responses to 25 of Karaseks core questions were utilized to define four job types: low demand and high control = “relaxed”; high demand and high control = “active”; low demand and low control = “passive”, and high demand with low control = “high strain.” These job types were compared against self-reported stress levels, perceived general level of health, absenteeism, alcohol use, exercise level, and use of medications and drugs. Similar analyses were performed to assess the influence of shift work. Results. Employees with “passive” or “high strain” job types reported higher levels of stress (trend test p <.0001); poorer health (trend test p = .006); and higher levels of absenteeism (trend test p >.0001). More shift workers reported themselves in poor or fair health (chi-square p = .018) and reported high levels of stress at home (chi-square p = .002) than nonshift workers. The relationships between job type and levels of stress, health, and absenteeism, however, held for nonshift workers as well. Conclusions. Job types with high demand and low control were associated with increased stress, increased absenteeism, and poorer self-concept of health. The demand/control model of Karasek and Theorell was validated in this setting with respect to stress and some stress-associated attitudes and behaviors.

Mastery, perceived stress and health-related behaviour in northeast Arnhem Land: a cross-sectional study

BackgroundIndigenous peoples in Australia are disadvantaged on all markers of health and social status across the life course. Psychosocial factors are implicated in the aetiology of chronic diseases and in pathways underpinning social health disparities. Minimal research has investigated psychosocial factors and health in Indigenous peoples. This study evaluated associations between mastery, perceived stress, and health-related behaviour for a remote Indigenous population in Australia.MethodsComplete data on mastery (the degree to which individuals feel in control of their lives), perceived stress, physical activity, and fruit and vegetable consumption were obtained for 177 participants in a community-based chronic disease risk factor survey. Psychosocial questionnaires were completed as an option during community screening (response rate = 61.9%). Extensive consultation facilitated the cross-cultural adaptation of measures.ResultsMastery was inversely correlated with perceived stress measures (p < 0.009): recent stress, r = -0.47; chronic stress, r = -0.41; and youth stress, r = -0.30. Relationships between mastery and behaviour varied according to age group (<25 or ≥25 years) for physical activity (p = 0.001) and vegetable consumption (p = 0.005). Individuals aged ≥25 years engaging in ≤2 bouts of physical activity/week had lower mastery than individuals engaging in ≥3 bouts/week, with means (95% CI) of 14.8 (13.7–15.8) and 17.1 (15.3–19.0), respectively (p = 0.026). Individuals aged ≥25 years eating vegetables ≤3 times/week had lower mastery than those eating vegetables ≥4 times/week (p = 0.009) [means 14.7 (13.8–15.5) and 17.3 (15.5–19.1), respectively]. Individuals <25 years engaging in ≤2 bouts of physical activity/week had greater mastery than individuals engaging in ≥3 bouts/week (p = 0.022) [means 17.2 (15.2–19.2) and 13.8 (11.9–15.7), respectively]. For men ≥25 years and women ≥15 years, mastery was inversely related to age (p < 0.002). Men <25 years had less mastery than women of equivalent age (p = 0.001) [means 13.4 (12.1–14.7) and 17.5 (15.3–19.8), respectively].ConclusionConsistent with previous research, this study provides additional support for a link between mastery and health-related behaviour, and extends evidence of this association to a remote Indigenous population. Masterys association with perceived stress, its age-specific association with health behaviour, and findings of low mastery amongst young men, highlights a need for life course research accounting for contextual factors affecting Indigenous peoples.

Pragmatic randomised trial of a 12-week exercise and nutrition program for Aboriginal and Torres Strait Islander women: clinical results immediate post and 3 months follow-up

BackgroundAboriginal and Torres Strait Islander women experience higher rates of heart disease and type 2 diabetes than non-Indigenous Australian women. Increasing physical activity, improving diets and losing weight have been shown to reduce cardio metabolic risk. The primary aim was to evaluate the effectiveness of a 12-week structured exercise and nutrition program in a cohort of urban Indigenous Australian women on waist circumference, weight and biomedical markers of metabolic functioning from baseline (T1) to program completion (T2). The secondary aim assessed whether these outcomes were maintained at 3-month follow-up.MethodsOne hundred Aboriginal and/or Torres Strait Islander women aged 18–64 years living in the Adelaide metropolitan area were recruited. The program included two 60-minute group cardiovascular and resistance training classes per week, and four nutrition education workshops. Participants were randomly assigned to an ‘active’ group or ‘waitlisted’ control group. Body weight, height, waist and hip circumference, blood pressure, fasting glucose, fasting insulin, glycated haemoglobin (HbA1C), lipid profile and C-reactive protein (CRP) were assessed at baseline (T1), immediately after the program (T2) and three months post program (T3).ResultsThe active group showed modest reductions in weight and body mass index (BMI). Compared to the waitlisted group, the active group had a statistically significantly change in weight and BMI from baseline assessments; at T2, -1.65 kg and -0.66 kg/m2 and at T3, -2.50 kg and -1.03 kg/m2, respectively. Systolic and diastolic blood pressure also had a statistically significant difference from baseline in the active group compared to the waitlisted group at T2, -1.24 mmHg and -2.46 mmHg and at T3, -4.09 mmHg and -2.17 mmHg, respectively. The findings were independent of the baseline measure of the outcome variable, age, households with children and employment status. Changes in waist circumference and other clinical measures were not significant at T2 or T3. The primary outcome measure, waist circumference, proved problematic to assess reliably. Missing data and participants lost to follow-up were significant.ConclusionsThis 12-week exercise program demonstrated modest reductions in weight, BMI and blood pressure at T2, which improved further at 3-month follow-up (T3). Positive intervention effects were observed despite low attendance at exercise classes. Structured exercise programs implemented in community settings require attention to understanding the barriers to participation for this high risk group.Trial registrationAustralian New Zealand Clinical Trials Registry ACTRN12610000224022