Can we build on social movement theories to develop and improve community‐based participatory research? a framework synthesis review

A long‐standing challenge in community‐based participatory research (CBPR) has been to anchor practice and evaluation in a relevant and comprehensive theoretical framework of community change. This study describes the development of a multidimensional conceptual framework that builds on social movement theories to identify key components of CBPR processes. Framework synthesis was used as a general literature search and analysis strategy. An initial conceptual framework was developed from the theoretical literature on social movement. A literature search performed to identify illustrative CBPR projects yielded 635 potentially relevant documents, from which eight projects (corresponding to 58 publications) were retained after record and full‐text screening. Framework synthesis was used to code and organize data from these projects, ultimately providing a refined framework. The final conceptual framework maps key concepts of CBPR mobilization processes, such as the pivotal role of the partnership; resources and opportunities as necessary components feeding the partnership's development; the importance of framing processes; and a tight alignment between the cause (partnership's goal), the collective action strategy, and the system changes targeted. The revised framework provides a context‐specific model to generate a new, innovative understanding of CBPR mobilization processes, drawing on existing theoretical foundations

When one is sick and two need help: Caregivers’ perspectives on the negative consequences of caring

Informal or family caregivers contribute significantly to individual care, and to the Canadian healthcare system, yet receive limited support from governments, institutions, and healthcare professionals in recognition of their role, or in response to their health and social care needs – often due to the negative consequences of caregiving. Learning about the diversity of others’ experiences can positively influence personal decision-making, reduce feelings of isolation, as well as promote adjustment to a personal situation. For caregivers, however, few resources exist that provide reliable information on others’ experiences. We collected the narratives of caregivers’ experiences of caring for someone with a chronic physical illness and produced an evidence-based web resource. Through purposive variation sampling, 42 caregivers were recruited across Canada for interviews in their homes or alternate location using video/audio recording. Qualitative data analysis followed a constant comparison approach. 29 thematic pages were developed for the web site (www.healthexperiences.ca) featuring the diversity of lived experiences, and presenting topics important to the caregivers with illustrative video/audio clips, along with other sources of information. Key themes related to caregivers’ perspectives on the negative consequences of caregiving included: the impact upon personal health; challenging interactions with professionals; inconsistent information, limited support from family and friends, and unhelpful societal views. These results contribute to existing evidence of caregiver burden, but uniquely in the voices of caregivers themselves – with constructive insights for understanding the causes of ill health related to caregiving burden and for informing policy and practice

Understanding how Indigenous culturally-based interventions can improve participants’ health in Canada

There is increasing recognition that culturally-based diabetes prevention programs can facilitate the adoption and maintenance of healthy behaviours in the communities in which they are implemented. The Kahnawake School Diabetes Prevention Project (KSDPP) is a health promotion, community-based participatory research project aiming to reduce the incidence of Type 2 diabetes in the community of Kahnawake (Mohawk territory, Canada), with a large range of interventions integrating a Haudenosaunee perspective of health. Building on a qualitative, naturalistic and interpretative inquiry, this study aimed to assess the outcomes of a suite of culturally-based interventions on participants’ life and experience of health. Data were collected through semi-structured qualitative interviews of 1 key informant and 17 adult, female Kahnawake community members who participated in KSDPP’s suite of interventions from 2007 to 2010. Grounded theory was chosen as an analytical strategy. A theoretical framework that covered the experiences of all study participants was developed from the grounded theory analysis. KSDPP’s suite of interventions provided opportunities for participants to experience five different change processes: (i) Learning traditional cooking and healthy eating; (ii) Learning physical activity; (iii) Learning mind focusing and breathing techniques; (iv) Learning cultural traditions and spirituality; (v) Socializing and interacting with other participants during activities. These processes improved participants’ health in four aspects: mental, physical, spiritual and social. Results of this study show how culturally-based health promotion can bring about healthy changes addressing the mental, physical, spiritual and social dimensions of a holistic concept of health, relevant to the Indigenous perspective of well-being

Successful Strategies to Engage Research Partners for Translating Evidence into Action in Community Health: A Critical Review

Objectives. To undertake a critical review describing key strategies supporting development of participatory research (PR) teams to engage partners for creation and translation of action-oriented knowledge. Methods. Sources are four leading PR practitioners identified via bibliometric analysis. Authors' publications were identified in January 1995-October 2009 in PubMed, Embase, ISI Web of Science and CAB databases, and books. Works were limited to those with a process description describing a research project and practitioners were first, second, third, or last author. Results. Adapting and applying the "Reliability Tested Guidelines for Assessing Participatory Research Projects" to retained records identified five key strategies: developing advisory committees of researchers and intended research users; developing research agreements; using formal and informal group facilitation techniques; hiring co-researchers/partners from community; and ensuring frequent communication. Other less frequently mentioned strategies were also identified. Conclusion. This review is the first time these guidelines were used to identify key strategies supporting PR projects. They proved effective at identifying and evaluating engagement strategies as reported by completed research projects. Adapting these guidelines identified gaps where the tool was unable to assess fundamental PR elements of power dynamics, equity of resources, and member turnover. Our resulting template serves as a new tool to measure partnerships

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

<p>Abstract</p> <p>Background</p> <p>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 (<it>e.g.</it>, community groups or populations affected by illness), or those positioned to act on the knowledge generated by research (<it>e.g.</it>, 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.</p> <p>Methods</p> <p>We 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 (<it>i.e.</it>, 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.</p> <p>Results</p> <p>The 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.</p> <p>Discussion</p> <p>The 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.</p

Challenges to the provision of diabetes care in first nations communities: results from a national survey of healthcare providers in Canada

<p>Abstract</p> <p>Background</p> <p>Aboriginal peoples globally, and First Nations peoples in Canada particularly, suffer from high rates of type 2 diabetes and related complications compared with the general population. Research into the unique barriers faced by healthcare providers working in on-reserve First Nations communities is essential for developing effective quality improvement strategies.</p> <p>Methods</p> <p>In Phase I of this two-phased study, semi-structured interviews and focus groups were held with 24 healthcare providers in the Sioux Lookout Zone in north-western Ontario. A follow-up survey was conducted in Phase II as part of a larger project, the Canadian First Nations Diabetes Clinical Management and Epidemiologic (CIRCLE) study. The survey was completed with 244 healthcare providers in 19 First Nations communities in 7 Canadian provinces, representing three isolation levels (isolated, semi-isolated, non-isolated). Interviews, focus groups and survey questions all related to barriers to providing optimal diabetes care in First Nations communities.</p> <p>Results</p> <p>the key factors emerging from interviews and focus group discussions were at the patient, provider, and systemic level. Survey results indicated that, across three isolation levels, healthcare providers' perceived patient factors as having the largest impact on diabetes care. However, physicians and nurses were more likely to rank patient factors as having a large impact on care than community health representatives (CHRs) and physicians were significantly less likely to rank patient-provider communication as having a large impact than CHRs.</p> <p>Conclusions</p> <p>Addressing patient factors was considered the highest impact strategy for improving diabetes care. While this may reflect "patient blaming," it also suggests that self-management strategies may be well-suited for this context. Program planning should focus on training programs for CHRs, who provide a unique link between patients and clinical services. Research incorporating patient perspectives is needed to complete this picture and inform quality improvement initiatives.</p

A community based field research project investigating anaemia amongst young children living in rural Karnataka, India: a cross sectional study

<p>Abstract</p> <p>Background</p> <p>Anaemia is an important problem amongst young children living in rural India. However, there has not previously been a detailed study of the biological aetiology of this anaemia, exploring the relative contributions of iron, vitamin B12, folate and Vitamin A deficiency, inflammation, genetic haemoglobinopathy, hookworm and malaria. Nor have studies related these aetiologic biological factors to household food security, standard of living and child feeding practices. Barriers to conducting such work have included perceived reluctance of village communities to permit their children to undergo venipuncture, and logistical issues. We have successfully completed a community based, cross sectional field study exploring in detail the causes of anaemia amongst young children in a rural setting.</p> <p>Methods and design</p> <p>A cross sectional, community based study. We engaged in extensive community consultation and tailored our study design to the outcomes of these discussions. We utilised local women as field workers, harnessing the capacity of local health workers to assist with the study. We adopted a programmatic approach with a census rather than random sampling strategy in the village, incorporating appropriate case management for children identified to have anaemia. We developed a questionnaire based on existing standard measurement tools for standard of living, food security and nutrition. Specimen processing was conducted at the Primary Health Centre laboratory prior to transport to an urban research laboratory.</p> <p>Discussion</p> <p>Adopting this study design, we have recruited 415 of 470 potentially eligible children who were living in the selected villages. We achieved support from the community and cooperation of local health workers. Our results will improve the understanding into anaemia amongst young children in rural India. However, many further studies are required to understand the health problems of the population of rural India, and our study design and technique provide a useful demonstration of a successful strategy.</p