RESUMEN
BACKGROUND: Research funders in Canada and abroad have made substantial investments in supporting collaborative research approaches to generating and translating knowledge as it is believed to increase knowledge use. Canadian health research funders have advocated for the use of integrated knowledge translation (IKT) in health research, however, there is limited research around how IKT compares to other collaborative research approaches. Our objective was to better understand how IKT compares with engaged scholarship, Mode 2 research, co-production and participatory research by identifying the differences and similarities among them in order to provide conceptual clarity and reduce researcher and knowledge user confusion about these common approaches. METHODS: We employed a qualitative descriptive method using interview data to better understand experts' perspectives and experiences on collaborative research approaches. Participants' responses were analysed through thematic analysis to elicit core themes. The analysis was centred around the concept of IKT, as it is the most recent approach; IKT was then compared and contrasted with engaged scholarship, Mode 2 research, co-production and participatory research. As this was an iterative process, data triangulation and member-checking were conducted with participants to ensure accuracy of the emergent themes and analysis process. RESULTS: Differences were noted in the orientation (i.e. original purpose), historical roots (i.e. disciplinary origin) and partnership/engagement (i.e. role of partners etc.). Similarities among the approaches included (1) true partnerships rather than simple engagement, (2) focus on essential components and processes rather than labels, (3) collaborative research orientations rather than research methods, (4) core values and principles, and (5) extensive time and financial investment. Core values and principles among the approaches included co-creation, reciprocity, trust, fostering relationships, respect, co-learning, active participation, and shared decision-making in the generation and application of knowledge. All approaches require extensive time and financial investment to develop and maintain true partnerships. CONCLUSIONS: This qualitative study is the first to systematically synthesise experts' perspectives and experiences in a comparison of collaborative research approaches. This work contributes to developing a shared understanding of collaborative research approaches to facilitate conceptual clarity in use, reporting, indexing and communication among researchers, trainees, knowledge users and stakeholders to advance IKT and implementation science.
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Atención a la Salud/métodos , Personal de Salud/psicología , Difusión de la Información/métodos , Cooperación Internacional , Investigadores/psicología , Investigación Biomédica Traslacional/métodos , Adulto , Australia , Canadá , Femenino , Humanos , Irlanda , Estudios Longitudinales , Masculino , Persona de Mediana Edad , Estados UnidosRESUMEN
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.
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Investigación Participativa Basada en la Comunidad , Asistencia Sanitaria Culturalmente Competente/métodos , Promoción de la Salud/métodos , Grupos de Población , Canadá , Diabetes Mellitus Tipo 2/prevención & control , Ejercicio Físico , Femenino , Teoría Fundamentada , Humanos , Aprendizaje , Persona de Mediana Edad , Investigación Cualitativa , Servicios de Salud Escolar , Cambio SocialRESUMEN
Background: Kahnawà:ke is a Kanien'kehá:ka (Mohawk) community in Quebec, Canada. In 1997, the community-controlled Kateri Memorial Hospital Centre in partnership with the Kahnawake Education Center, and the Kahnawake Schools Diabetes Prevention Project (KSDPP) developed an elementary school diabetes prevention health education program, aimed to increase knowledge of Type 2 diabetes, healthy eating and active lifestyles. Long-term goals for KSDPP community and school interventions are to decrease obesity and diabetes. Objectives: To evaluate the Kateri Memorial Hospital Centre Health Education Program for Diabetes Prevention (HEP) and use key principles of knowledge translation to promote understanding of results to upgrade HEP content and improve delivery. Methods: A KSDPP community-based participatory research team used mixed methods for evaluation, combining a cross-sectional survey for 23 teachers with interviews of two elementary school principals and three culturally appropriate Indigenous talking circles with HEP authors, teachers and parents. Questionnaire results were presented as descriptive statistics. The thematic textual analysis identified emerging themes from talking circles and interviews. Results: Facilitators of HEP delivery were an acknowledgement of its importance; appreciation of prepared lesson plans for teachers; and KSDPP's strong community presence. Barriers included reduced administrative support and instructional time due to competing academic demands; the need for increased Kanien'kehá:ka cultural content; and outdated resource materials. Recommendations included increasing teacher training, Kanien'kehá:ka cultural content and administrative support. Conclusion: Community researchers undertook detailed knowledge translation activities of facilitators, barriers and recommendations with hospital and education centre administrators and Kahnawà:ke community to maximize uptake of findings before external dissemination of results.
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Curriculum , Diabetes Mellitus Tipo 2/prevención & control , Servicios de Salud del Indígena , Evaluación de Programas y Proyectos de Salud , Servicios de Salud Escolar , Investigación Participativa Basada en la Comunidad , Estudios Transversales , Diabetes Mellitus Tipo 2/etnología , Educación en Salud , Humanos , Quebec , Encuestas y Cuestionarios , Investigación Biomédica TraslacionalRESUMEN
BACKGROUND: Patient and public engagement is growing, but evaluative efforts remain limited. Reviews looking at evaluation tools for patient engagement in individual decision making do exist, but no similar articles in research and health systems have been published. OBJECTIVE: Systematically review and appraise evaluation tools for patient and public engagement in research and health system decision making. METHODS: We searched literature published between January 1980 and February 2016. Electronic databases (Ovid MEDLINE, Embase, Cochrane Database of Systematic Reviews, CINAHL and PsycINFO) were consulted, as well as grey literature obtained through Google, subject-matter experts, social media and engagement organization websites. Two independent reviewers appraised the evaluation tools based on 4 assessment criteria: scientific rigour, patient and public perspective, comprehensiveness and usability. RESULTS: In total, 10 663 unique references were identified, 27 were included. Most of these tools were developed in the last decade and were designed to support improvement of engagement activities. Only 11% of tools were explicitly based on a literature review, and just 7% were tested for reliability. Patients and members of the public were involved in designing 56% of the tools, mainly in the piloting stage, and 18.5% of tools were designed to report evaluation results to patients and the public. CONCLUSION: A growing number of evaluation tools are available to support patient and public engagement in research and health system decision making. However, the scientific rigour with which such evaluation tools are developed could be improved, as well as the level of patient and public engagement in their design and reporting.
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Toma de Decisiones , Prioridades en Salud , Investigación sobre Servicios de Salud , Participación del Paciente , Evaluación de Programas y Proyectos de Salud , Encuestas y Cuestionarios , Atención a la Salud , Humanos , Mejoramiento de la CalidadRESUMEN
BACKGROUND: A longstanding challenge of community-based participatory research (CBPR) has been to anchor evaluation and practice in a relevant theoretical framework of community change, which articulates specific and concrete evaluative benchmarks. Social movement theories provide a broad range of theoretical tools to understand and facilitate social change processes, such as those involved in CBPR. Social movement theories have the potential to provide a coherent representation of how mobilization and collective action is gradually developed and leads to systemic change in the context of CBPR. The current study builds on a social movement perspective to assess the processes and intermediate outcomes of a longstanding health promotion CBPR project with an Indigenous community, the Kahnawake Schools Diabetes Prevention Project (KDSPP). METHODS: This research uses a case study design layered on a movement-building evaluation framework, which allows progress to be tracked over time. Data collection strategies included document (scientific and organizational) review (n = 51) and talking circles with four important community stakeholder groups (n = 24). RESULTS: Findings provide an innovative and chronological perspective of the evolution of KSDPP as seen through a social movement lens, and identify intermediate outcomes associated with different dimensions of movement building achieved by the project over time (mobilization, leadership, vision and frames, alliance and partnerships, as well as advocacy and action strategies). It also points to areas of improvement for KSDPP in building its potential for action. CONCLUSION: While this study's results are directly relevant and applicable to the local context of KSDPP, they also highlight useful lessons and conclusions for the planning and evaluation of other long-standing and sustainable CBPR initiatives. The conceptual framework provides meaningful benchmarks to track evidence of progress in the context of CBPR. Findings from the study offer new ways of thinking about the evaluation of CBPR projects and their progress by drawing on frameworks that guide other forms of collective action.
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Investigación Participativa Basada en la Comunidad , Diabetes Mellitus/prevención & control , Servicios de Salud Escolar , Cambio Social , Benchmarking , Canadá , Humanos , Evaluación de Programas y Proyectos de Salud , Teoría SocialRESUMEN
BACKGROUND: Organizational Participatory Research (OPR) seeks organizational learning and/or practice improvement. Previous systematic literature reviews described some OPR processes and outcomes, but the link between these processes and outcomes is unknown. We sought to identify and sequence the key processes of OPR taking place with and within healthcare organizations and the main outcomes to which they contribute, and to define ideal-types of OPR. METHODS: This article reports a participatory systematic mixed studies review with qualitative synthesis A specialized health librarian searched MEDLINE, CINAHL, Embase Classic + Embase, PsycINFO, the Cochrane Library, Social Work Abstracts and Business Source Complete, together with grey literature data bases were searched from inception to November 29, 2012. This search was updated using forward citation tracking up to June 2014. Reporting quality was appraised and unclear articles were excluded. Included studies clearly reported OPR where the main research related decisions were co-constructed among the academic and healthcare organization partners. Included studies were distilled into summaries of their OPR processes and outcomes, which were subsequently analysed using deductive and inductive thematic analysis. All summaries were analysed; that is, data analysis continued beyond saturation. RESULTS: Eighty-three studies were included from the 8873 records retrieved. Eight key OPR processes were identified. Four follow the phases of research: 1) form a work group and hold meetings, 2) collectively determine research objectives, 3) collectively analyse data, and 4) collectively interpret results and decide how to use them. Four are present throughout OPR: 1) communication, 2) relationships; 3) commitment; 4) collective reflection. These processes contribute to extra benefits at the individual and organizational levels. Four ideal-types of OPR were defined. Basic OPR consists of OPR processes leading to achieving the study objectives. This ideal-type and may be combined with any of the following three ideal-types: OPR resulting in random additional benefits for the individuals or organization involved, OPR spreading to other sectors of the organization and beyond, or OPR leading to subsequent initiatives. These results are illustrated with a novel conceptual model. CONCLUSION: The model provides operational guidance to help OPR stakeholders collaboratively address organizational issues and achieve desired outcomes and more. REVIEW REGISTRATION: As per PROSPERO inclusion criteria, this review is not registered.
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Investigación sobre Servicios de Salud , Organizaciones/organización & administración , Comunicación , Atención a la Salud , Humanos , Aprendizaje , Modelos Organizacionales , Cultura Organizacional , Proyectos de InvestigaciónRESUMEN
This participatory research study examines the tensions and opportunities in accessing allopathic medicine, or biomedicine, in the context of a cervical cancer screening program in a rural indigenous community of Northern Ecuador. Focusing on the influence of social networks, the article extends research on "re-appropriation" of biomedicine. It does so by recognizing two competing tensions expressed through social interactions: suspicion of allopathic medicine and the desire to maximize one's health. Semistructured individual interviews and focus groups were conducted with 28 women who had previously participated in a government-sponsored cervical screening program. From inductive thematic analysis, the article traces these women's active agency in navigating coherent paths of health. Despite drawing on social networks to overcome formidable challenges, the participants faced enduring system obstacles-the organizational effects of the networks of allopathic medicine. Such obstacles need to be understood to reconcile competing knowledge systems and improve health care access in underresourced communities.
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Detección Precoz del Cáncer/métodos , Accesibilidad a los Servicios de Salud/organización & administración , Indígenas Sudamericanos/psicología , Población Rural , Neoplasias del Cuello Uterino/diagnóstico , Adulto , Anciano , Barreras de Comunicación , Investigación Participativa Basada en la Comunidad , Ecuador , Femenino , Conocimientos, Actitudes y Práctica en Salud/etnología , Humanos , Entrevistas como Asunto , Lenguaje , Persona de Mediana Edad , Racismo/etnología , Sexismo/etnología , Red Social , Neoplasias del Cuello Uterino/etnologíaRESUMEN
Background: . Community based participatory research (CBPR) is often initiated by academic researchers, yet relies on meaningful community engagement and ownership to have lasting impact. Little is understood about how ownership shifts from academic to community partners. Objectives: . We examined a CBPR project over its life course and asked: what does the evolution of ownership look like from project initiation by an academic (non-community) champion (T1); to maturation-when the intervention is ready to be deployed (T2); to independence-the time when the original champion steps aside (T3); and finally, to its maintenance-when the community has had an opportunity to function independently of the original academic champion (T4)? Methods: . Using sociometric (whole network) social network analysis, knowledge leadership was measured using 'in-degree centrality'. Stakeholder network structure was measured using 'centralisation' and 'core-periphery analysis'. Friedman rank sum test was used to measure change in actor roles over time from T1 to T4. Results: . Project stakeholder roles were observed to shift significantly (P < 0.005) from initiation (T1) to project maintenance (T4). Community stakeholders emerged into positions of knowledge leadership, while the roles of academic partners diminished in importance. The overall stakeholder network demonstrated a structural shift towards a core of densely interacting community stakeholders. Conclusion: . This was the first study to use Social network analysis to document a shift in ownership from academic to community partners, indicating community self-determination over the research process. Further analysis of qualitative data will determine which participatory actions or strategies were responsible for this observed change.
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Investigación Participativa Basada en la Comunidad , Conducta Cooperativa , Procesos de Grupo , Promoción de la Salud/organización & administración , Propiedad/tendencias , Canadá , Estudios Transversales , Humanos , Indígenas Norteamericanos/psicología , Poblaciones VulnerablesRESUMEN
Background: In order to maximize the benefits of community-based participatory research, effective ownership over the research process must be at least equally in the hands of the community. A previous social network analysis documented that the participatory research process shifted ownership from academic to community partners, but did not show what actions and strategies fostered this shift. Objectives: This study follows the trajectory of a community-academic partnership and asks, from the perspective of the project stakeholders, which actions and strategies over the lifespan of the research led to the observed shift in ownership and decision-making from the original external academics to the community stakeholders? Methods: Qualitative description using inductive thematic analysis. One academic and five community stakeholders identified as central in a previous social network analysis, participated in retrospective, semi-structured interviews. Results: Actions deemed to have fostered the observed shift in ownership included: existence of a strong champion; stimulating 'outside' ideas; emergence of core people; alignment of project goals with stakeholders' professional roles; involving the right people; personal qualities of the champion; trust-building; and active use of participatory engagement strategies. Conclusion: Although communities must take ownership over the research process to assure sustained action and change, a strong, trusted and accepted outside champion who actively enacts participatory engagement strategies can facilitate the participatory process and provide community stakeholders the time and support they need to achieve meaningful and sustained leadership roles. These findings have implications for how partnership research is designed and implemented, both in community and in clinical organisational settings.
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Investigación Participativa Basada en la Comunidad , Conducta Cooperativa , Propiedad , Autonomía Personal , Indio Americano o Nativo de Alaska , Toma de Decisiones , Femenino , Promoción de la Salud , Humanos , Entrevistas como Asunto , Masculino , Investigación CualitativaRESUMEN
Background: In 1998, the North American Primary Care Research Group (NAPCRG) adopted a groundbreaking Policy Statement endorsing responsible participatory research (PR) with communities. Since that time, PR gained prominence in primary care research. Objectives: To reconsider the original 1998 Policy Statement in light of increased uptake of PR, and suggest future directions and applications for PR in primary care. This work contributed to an updated Policy Statement endorsed by NAPCRG in 2015. Methods: 32 university and 30 community NAPCRG-affiliated research partners, convened a workshop to document lessons learned about implementing processes and principles of PR. This document emerged from that session and reflection and discussion regarding the original Policy Statement, the emerging PR literature, and our own experiences. Results: The foundational principles articulated in the 1998 Policy Statement remain relevant to the current PR environment. Lessons learned since its publication include that the maturation of partnerships is facilitated by participatory processes that support increased community responsibility for research projects, and benefits generated through PR extend beyond research outcomes. Future directions that will move forward the field of PR in primary care include: (i) improve assessment of PR processes to better delineate the links between how PR teams work together and diverse PR outcomes, (ii) increase the number of models incorporating PR into translational research from project inception to dissemination, and (iii) increase application of PR approaches that support patient engagement in clinical settings to patient-provider relationship and practice change research. Conclusion: PR has markedly altered the manner in which primary care research is undertaken in partnership with communities and its principles and philosophies continue to offer means to assure that research results and processes improve the health of all communities.
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Investigación Participativa Basada en la Comunidad/métodos , Política de Salud , Objetivos Organizacionales , Participación del Paciente , Canadá , Humanos , Investigación Biomédica Traslacional , Estados UnidosRESUMEN
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.
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Participación de la Comunidad , Investigación Participativa Basada en la Comunidad , Relaciones Comunidad-Institución , Movilidad Social , Teoría Social , Investigación Participativa Basada en la Comunidad/métodos , Promoción de la Salud , Humanos , Entrevistas como Asunto , Desarrollo de Programa , Psicología Social , Justicia SocialRESUMEN
BACKGROUND: 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. METHODS: 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'. RESULTS: 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. CONCLUSION: 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.
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Investigación Participativa Basada en la Comunidad/organización & administración , Relaciones Comunidad-Institución , Conducta Cooperativa , Universidades/organización & administración , Conocimientos, Actitudes y Práctica en Salud , Estado de Salud , Humanos , Investigación , Factores de Tiempo , ConfianzaRESUMEN
BACKGROUND: Ensuring access to timely and appropriate primary healthcare for people living in poverty is an issue facing all countries, even those with universal healthcare systems. The transformation of healthcare practices and organization could be improved by involving key stakeholders from the community and the healthcare system in the development of research interventions. The aim of this project is to stimulate changes in healthcare organizations and practices by encouraging collaboration between care teams and people living in poverty. Our objectives are twofold: 1) to identify actions required to promote the adoption of professional practices oriented toward social competence in primary care teams; and 2) to examine factors that would encourage the inclusion of people living in poverty in the process of developing social competence in healthcare organizations. METHODS/DESIGN: This study will use a participatory action research design applied in healthcare organizations. Participatory research is an increasingly recognized approach that is helpful for involving the people for whom the research results are intended. Our research team consists of 19 non-academic researchers, 11 academic researchers and six partners. A steering committee composed of academic researchers and stakeholders will have a decision-making role at each step, including knowledge dissemination and recommendations for new interventions. In this project we will adopt a multiphase approach and will use a variety of methods, including photovoice, group discussions and interviews. DISCUSSION: The proposed study will be one of only a few using participatory research in primary care to foster changes aimed at enhancing quality and access to care for people living in poverty. To our knowledge this will be the first study to use photovoice in healthcare organizations to promote new interventions. Our project includes partners who are targeted for practice changes and improvements in delivering primary care to persons living in poverty. By involving knowledge users, including service recipients, our study is more likely to produce a transformation of professional practices and encourage healthcare organizations to take into account the needs of persons living in poverty.
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Redes Comunitarias , Investigación Participativa Basada en la Comunidad , Áreas de Pobreza , Atención Primaria de Salud/organización & administración , Canadá , Atención a la Salud , Femenino , Disparidades en Atención de Salud , Humanos , Relaciones Interprofesionales , Masculino , Área sin Atención Médica , Persona de Mediana Edad , Investigación Cualitativa , Proyectos de InvestigaciónRESUMEN
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.
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Investigación Participativa Basada en la Comunidad , Evaluación de Programas y Proyectos de Salud , Creación de Capacidad , Conducta Cooperativa , Investigación sobre Servicios de Salud , Humanos , Selección de PersonalRESUMEN
BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.
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Diabetes Mellitus Tipo 2/etnología , Accesibilidad a los Servicios de Salud , Servicios de Salud del Indígena/organización & administración , Indígenas Norteamericanos , Canadá , Estudios Transversales , Diabetes Mellitus Tipo 2/terapia , Femenino , Grupos Focales , Encuestas de Atención de la Salud , Investigación sobre Servicios de Salud , Humanos , Masculino , Ontario , Investigación CualitativaRESUMEN
OBJECTIVE: To understand more specifically how the quality, quantity and frequency of snack food consumption differs in different BMI categories. DESIGN: Four hundred and forty-nine school-aged children (grade 4-6) from a Kanien'kehaka (Mohawk) community provided a 24 h recall and their height and weight in 1994, 1998 and 2002, in three independent cross-sectional samples. Food consumed between two consecutive meals was defined as a snacking occasion. ANOVA and chi2 tests were used to compare food choices between BMI categories according to food quality criteria and food groups in 2006. Logistic regression models were performed to compare results between normal-weight children and those at risk of overweight and between normal-weight and overweight children. RESULTS: Energy intake from snacks tended to be higher for children at risk of overweight, compared with the other two BMI categories. Food groups with a higher energy density were also consumed more frequently by these children, with larger average portions of cereal bars (P < 0.05). Except for dessert consumption, which was less frequent among overweight children, no other variable distinguished risk of overweight in the two logistic regression models tested. CONCLUSIONS: Differences detected in snack food intake between normal-weight children and children at risk of overweight could explain in part the relationship between food choices and risk of overweight. Studies of dietary differences in conjunction with body weight would benefit from considering children at risk of overweight and normal-weight children, rather than children with excess weight only.
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Índice de Masa Corporal , Ingestión de Energía/fisiología , Conducta Alimentaria , Indígenas Norteamericanos/estadística & datos numéricos , Sobrepeso/epidemiología , Adolescente , Análisis de Varianza , Distribución de Chi-Cuadrado , Niño , Ciencias de la Nutrición del Niño/educación , Fenómenos Fisiológicos Nutricionales Infantiles , Conducta de Elección , Estudios Transversales , Dieta/normas , Encuestas sobre Dietas , Femenino , Humanos , Modelos Logísticos , Masculino , Necesidades Nutricionales , Sobrepeso/etnología , Sobrepeso/etiología , Prevalencia , Quebec , Factores de RiesgoRESUMEN
BACKGROUND: Participatory approaches that engage affected populations are increasingly applied in humanitarian health programs in concert with emerging accountability frameworks and the rapid growth of research in these settings. Participatory initiatives within this domain appear to be largely adopted at an operational level and are infrequently reported as a component of research efforts. Yet the evidence of the benefits of research involving community members is growing worldwide. This is the first review of participatory research (PR) in humanitarian settings. OBJECTIVES: This study sought to understand the extent to which PR values and practices have been adopted in humanitarian health programs and to explore key issues in applying PR in this context. METHODS: This scoping review was based on the approach developed by Arksey and O'Malley. The search for relevant peer-reviewed articles included scientific databases, a humanitarian database, targeted journals and online resources published since 2009. Eleven articles were retrieved and reviewed to identify practices and key issues related to conducting PR in humanitarian settings. RESULTS: Four key themes were identified: building trust with local research stakeholders and participants; the importance of contextual understanding; implications of collaborating with affected populations in PR, and neutrality of researchers and Non-Governmental Organizations (NGOs). Study teams considered PR as a valued approach where there was mistrust or a need for contextualized understanding. The studies described how adaptations made during the study optimized collaboration with affected populations and how the presence of NGOs influenced the approach and results of PR. CONCLUSIONS: One of the most important contributions of humanitarian health programs is to develop 'medical practices that are better adapted to the living conditions and priorities of patients who are generally ignored'. Participatory approaches, such as PR, support the development of health-related practices that are more relevant and sustainable for affected populations.
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Altruismo , Investigación Participativa Basada en la Comunidad/organización & administración , Atención a la Salud/organización & administración , Sistemas de Socorro/organización & administración , Conducta Cooperativa , Humanos , Atención Dirigida al Paciente/organización & administración , ConfianzaRESUMEN
The present analyses aim to identify differences in selected dimensions of diet quality and quantity across body mass index (BMI) categories for Mohawk children in grades 4 through 6 so as to enhance ongoing community intervention strategies within the Kahnawake School Diabetes Prevention Project (KSDPP). Using 24-hour recalls (n=444), no observable differences in energy intake, percent fat, energy density, or diet diversity across BMI categories were observed. Using a new method, we compared the frequency of use and the amounts consumed for only the most-frequently consumed food items across BMI categories. Compared to normal-weight children, and after adjusting for age, children "at risk of overweight" consume potato chips more frequently (P=0.017) and crackers less frequently (P=0.153), while overweight children consumed larger portions of french fries (P=0.027). We conclude that, in this group of children, consuming slightly more french fries or potato chips than what is already consumed by normal-weight children appears to compromise diet quality as far as overweight is concerned.