Sophie Dupéré

Focus Groups in Rural Gujarat, India: A Modified Approach

Focus groups have become increasingly popular in health research. However, their feasibility depends on the context of such research. Through discussion of focus groups they conducted in rural India, the authors argue that successful focus groups in rural contexts must be culturally sensitive, with a research team that goes beyond the mere technicalities of collecting data. A culturally competent focus group can result when the research team has geographic, political, economic, and sociocultural knowledge related to the research area and its population. With extensive local collaboration, foreign researchers are better able to conduct data collection respectfully. The authors provide recommendations for future studies toward increasing the cultural appropriateness of focus groups in areas such as rural India.

Involving members of vulnerable populations in the development of patient decision aids: a mixed methods sequential explanatory study

BackgroundPatient decision aids aim to present evidence relevant to a health decision in understandable ways to support patients through the process of making evidence-informed, values-congruent health decisions. It is recommended that, when developing these tools, teams involve people who may ultimately use them. However, there is little empirical evidence about how best to undertake this involvement, particularly for specific populations of users such as vulnerable populations.MethodsTo describe and compare the development practices of research teams that did and did not specifically involve members of vulnerable populations in the development of patient decision aids, we conducted a secondary analysis of data from a systematic review about the development processes of patient decision aids. Then, to further explain our quantitative results, we conducted semi-structured telephone interviews with 10 teams: 6 that had specifically involved members of vulnerable populations and 4 that had not. Two independent analysts thematically coded transcribed interviews.ResultsOut of a total of 187 decision aid development projects, 30 (16%) specifically involved members of vulnerable populations. The specific involvement of members of vulnerable populations in the development process was associated with conducting informal needs assessment activities (73% vs. 40%, OR 2.96, 95% CI 1.18–7.99, P = .02) and recruiting participants through community-based organizations (40% vs. 11%, OR 3.48, 95% CI 1.23–9.83, P = .02). In interviews, all developers highlighted the importance, value and challenges of involving potential users. Interviews with developers whose projects had involved members of vulnerable populations suggested that informal needs assessment activities served to center the decision aid around users’ needs, to better avoid stigma, and to ensure that the topic truly matters to the community. Partnering with community-based organizations may facilitate relationships of trust and may also provide a non-threatening and accessible location for research activities.ConclusionsThere are a small number of key differences in the development processes for patient decision aids in which members of vulnerable populations were or were not specifically involved. Some of these practices may require additional time or resources. To address health inequities, researchers, communities and funders may need to increase awareness of these approaches and plan accordingly.

Women's Political Participation in Rural India Discerning Discrepancies Through a Gender Lens

This paper explores selected underlying themes related to rural Gujarati womens political participation. An analysis of this data subset provides an understanding of how gender operates in rural Gujarat with respect to womens social mobility as mediated by dimensions such as age, education, socio-economic status and household dynamics. Through qualitative inquiry and a gender-based analysis, this paper reveals the discrepancies between female and male perceptions concerning persistently low levels of female political participation, and in turn informs future directives working towards womens empowerment and gender parity.

Transforming primary healthcare by including the stakeholders involved in delivering care to people living in poverty: EQUIhealThY study protocol

BackgroundEnsuring 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/designThis 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.DiscussionThe 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.

Why Men Experiencing Deep Poverty in Montréal Avoid Using Health and Social Services in Times of Crisis

This article describes the experiences of men living in deep poverty regarding their decision not to seek out health and social services in moments of crisis, even when they recognized needing help. It presents results from a qualitative research project done in collaboration with a community center in a disadvantaged neighborhood of Montreal, Canada. It was designed to increase understanding of mens experiences of poverty and the role played by health and social services in their lives. Data were collected through 80 days of participant observation, 22 semi-directed interviews, and six group discussions with men living in poverty. The results show that these men are reluctant to use health and social services for three main reasons: 1) the nature of their problems; 2) their difficulty in seeking help; 3) the nature of services offered. The paper concludes with implications of the findings for future research and interventions.

Translating knowledge on poverty to humanize care: benefits and synergies of community engagement with the arts

The knowledge translation movement in health has led to the production of vast amounts of knowledge tools aimed at broadening clinicians’ evidence base and improving the quality and efficacy of their practices. However important, these tools, largely oriented towards biomedical and technological aspects of care, are of limited potential for addressing the complex interactions between patients’ socio-economic contexts and their health. Yet health professionals frequently lack the sensitivity, knowledge and ability to incorporate approaches to poverty within their practices; this is partly due to their limited understanding of the lived experience of poverty and of the complexity of barriers underprivileged people face to achieve and maintain health. In a context of persisting social inequalities in oral health, the Montreal-based Listening to Others multi-stakeholder partnership has been engaged in developing health professional education on poverty since 2006. In this article, we describe and reflect on how service users representing the Québec antipoverty coalition, academics from University of Montreal and McGill University, representatives of Québec dental regulatory bodies and artists collaborated to produce an educational film on poverty. Project partners’ specific contributions to the film script are highlighted, emphasizing their potential to enrich the health professional educator’s practice knowledge base. In doing so, this article provides an explicit and concrete example of how participatory processes can support co-learning and knowledge co-production through engagement with the arts. The overall aim is to demonstrate how participatory research can enhance knowledge translation by producing educational tools that promote critical reflection and address complexity.

L’implication des personnes vulnérables dans la recherche participative en soins primaires : une revue de la littérature

Malgré un vif intérêt pour la participation des patients à la gestion et à la prestation des soins de santé primaires, il n’existe aucune revue de la littérature sur le rôle des personnes vulnérables dans les projets de recherche participative menés dans le domaine des soins primaires. Une revue de la littérature de type narrative a été menée afin de combler cette lacune. L’objectif principal de cette revue a été d’évaluer le rôle des personnes vulnérables au sein de projets de recherche participative. Notre revue a recensé 26 articles et analysé 33 projets de recherche ou d’intervention en soins primaires. Elle révèle de nombreux écueils concernant l’implication des personnes vulnérables. Ces personnes ont joué un rôle varié, mais surtout modeste ou limité au sein des différents projets. Leur implication a surtout eu lieu à l’étape de la collecte des données. Peu de projets ont permis aux personnes vulnérables de prendre part à l’analyse des données ou à la diffusion des connaissances. Les tensions entre les chercheurs et les personnes vulnérables et la tendance à intégrer des acteurs organisés au sein des projets ont contribué à affaiblir le degré de participation des personnes vulnérables, et ce, à diverses étapes du processus de recherche et du développement d’intervention. Malgré tout, plusieurs retombées positives ont été identifiées, tant pour la communauté et les personnes vulnérables que pour les chercheurs. Entre autres, les projets ont permis aux chercheurs non universitaires d’acquérir de nouvelles compétences. De plus, certains projets ont favorisé la mise en place de nouveaux modèles de prestations de soins. Enfin, différents mécanismes permettant de rehausser la réciprocité entre les chercheurs et les personnes vulnérables sont proposés comme solutions pour réduire les inégalités et les tensions et, ultimement, favoriser l’implication des personnes vulnérables.

La diversité culturelle montréalaise : une diversité de défis pour la santé publique

L’essor de l’immigration au Quebec exige de la sante publique une adaptation de ses programmes et ses services, notamment ceux de premiere ligne. Le defi est de tenir compte de la nouvelle heterogeneite des populations, d’integrer des valeurs et des savoir-faire diversifies dans l’elaboration des programmes et de la prestation de soins et de services, tout en respectant les valeurs des divers acteurs impliques et les normes des institutions de la societe d’accueil. Le present article dresse l’etat de la question des strategies d’adaptation des services de sante, notamment le developpement des programmes de promotion et de prevention en sante publique ainsi que la prestation des soins de premiere ligne dans un contexte interculturel a Montreal. Cette preoccupation d’adaptation s’inscrit dans le contexte de la Politique de sante et du bien-etre du gouvernement du Quebec (1992). Elle se veut une reponse aux demandes frequentes des divers acteurs de part et d’autre de la relation interculturelle par l’adaptation des programmes de sante publique ainsi que des services publics aux realites qui emergent de l’immigration. Une reflexion est proposee sur les particularites de l’adaptation des programmes de promotion de la sante et de prevention des maladies aupres des communautes culturelles et/ou vivant des experiences de migration, sur le developpement d’indicateurs d’appartenance ethnoculturelle et autres permettant de capter les experiences de migration et leurs effets sur la sante.Il est a souhaiter que la reforme du reseau des services sociaux et de sante actuellement en cours au Quebec saisisse l’occasion de rendre imputables les instances de premiere ligne de l’etat de l’adaptation de leurs programmes et de leurs services a la diversite de leur population.

Health literacy – engaging the community in the co-creation of meaningful health navigation services: a study protocol

BackgroundA large proportion of patients encounter barriers to access and navigation in complex healthcare systems. They are unable to obtain information and services and to take appropriate action to improve their health. Low health literacy affects the ability of individuals to benefit from health services. Some social groups are disproportionately affected by low health literacy, including those with low educational attainment, Aboriginal people, and those on social assistance. These individuals face significant barriers in self-management of chronic diseases and in navigating the healthcare system. For these people, living in a context of deprivation contributes to maintaining disparities in access to healthcare and services. The objective of this study is to support knowledge co-construction and knowledge translation in primary care and services by involving underserved and Aboriginal people in research.MethodsThis study will integrate participatory health processes and action research to co-create, with patients, individuals, and community members impacted by health literacy, practical recommendations or solutions for facilitating navigation of the healthcare system by patients, individuals, and community members with less than optimal health literacy on how to best access health services. With this approach, academics and those for whom the research is intended will collaborate closely in all stages of the research to identify findings of immediate benefit to those impacted by health literacy and work together on knowledge translation. This study, carried out by researchers, community organizations and groups of people with low health literacy from three different regions of Quebec and Saskatchewan who can play an expert role in improving health services, will be conducted in three phases: 1) data collection; 2) data analysis and interpretation; and, 3) knowledge translation.DiscussionPersons with low health literacy experience major obstacles in navigating the health system. This project will therefore contribute to addressing the gap between healthcare challenges and the needs of underserved patients with multi-morbidity and/or low health literacy who have complex health-related needs. It will pave the way for co-creating successful solutions for and with these communities that will increase their access to health services.

Repenser ensemble le concept d’autonomie alimentaire:

C’est au cœur du projet de recherche-action participative « Vers une autonomie alimentaire pour tou-te-s : agir et vivre ensemble le changement » (VAATAVEC) que s’est élaborée une définition nouvelle et évolutive de l’autonomie alimentaire. De ce projet regroupant des personnes en situation de pauvreté, chercheurs et intervenants, a émergé une conceptualisation résultant à la fois d’une méthode de réflexion collective et d’un processus d’analyse collective, inspiré de la théorisation ancrée et de l’analyse conceptualisante de Paillé et Mucchielli (2003). Le recours à l’expertise des personnes en situation de pauvreté, expertes du vécu de l’insécurité alimentaire, a contribué à ancrer cette définition dans les causes structurelles de l’insécurité alimentaire dans une perspective de développement d’un pouvoir d’agir collectif, de toutes les personnes concernées. Il en résulte une définition de l’autonomie alimentaire d’où ressort une contribution surtout méthodologique et théorique.