The increasing use of participatory research (PR) approaches to address pressing public health issues reflects PR's 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.
Community-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. Building 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’. The 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. These 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.
3 May 2012 in International Journal of Behavioral Nutrition and 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.
Participatory 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.
This 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. A 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. The prevalence of psychological distress, mental disorders and use of mental health services and their correlates are described for the first wave of data collection. Several 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.
Background: Aboriginal Australians suffer from poorer overall health compared to the general Australian population, particularly in terms of cardiovascular disease and prognosis following a cardiac event. Despite such disparities, Aboriginal Australians utilise health care services at much lower rates than the general population. Improving health care utilisation (HCU) among Aboriginal cardiac patients requires a better understanding of the factors that constrain or facilitate use. The study aimed to identify ecological factors influencing health care utilisation (HCU) for Aboriginal cardiac patients, from the time of their cardiac event to 6–12 months post-event, in central Australia. Methods: This qualitative descriptive study was guided by an ecological framework. A culturally-sensitive illness narrative focusing on Aboriginal cardiac patients’ “typical” journey guided focus groups and semi-structured interviews with Aboriginal cardiac patients, non-cardiac community members, health care providers and community researchers. Analysis utilised a thematic conceptual matrix and mixed coding method. Themes were categorised into Predisposing, Enabling, Need and Reinforcing factors and identified at Individual, Interpersonal, Primary Care and Hospital System levels. Results: Compelling barriers to HCU identified at the Primary Care and Hospital System levels included communication, organisation and racism. Individual level factors related to HCU included language, knowledge of illness, perceived need and past experiences. Given these individual and health system barriers patients were reliant on utilising alternate family-level supports at the Interpersonal level to enable their journey. Conclusion: Aboriginal cardiac patients face significant barriers to HCU, resulting in sub-optimal quality of care, placing them at risk for subsequent cardiovascular events and negative health outcomes. To facilitate HCU amongst Aboriginal people, strategies must be implemented to improve communication on all levels and reduce systemic barriers operating within the health system.