Interdisciplinary community-based participatory health research across the industrial region of the Étang de Berre : The EPSEAL Fos Crau study.

BACKGROUND: We conducted a community-based participatory environmental health study in three towns: two in the heart of Marseille's industrial zone (Fos-sur-Mer and Port-Saint-Louis-du-Rhône), and one on the periphery located about 30 km away (Saint-Martin-de-Crau). METHODS: We first conducted a cross-sectional survey of a random sample of residents in each of the three towns. We asked study participants to self-report a wide variety of health issues (Port-Saint-Louis: n = 272, Fos-sur-Mer: n = 543, Saint-Martin-de-Crau: n = 439). We then conducted focus groups with residents and other stakeholders to share preliminary data in order to propose areas of reflection and collaboratively produce contextually-situated knowledge of their health and environment. We directly standardized the prevalences (by age and gender) to the French metropolitan population to make our results more comparable. RESULTS: Study participants who lived closer to the core industrial zone (residents of Fos-sur-Mer and Port-Saint-Louis-du-Rhone) had higher prevalences of eye irritation, nose and throat problems, chronic skin problems and headaches than people who lived further away (residents of Saint-Martin-de-Crau). Residents also offered diverse qualitative insights about their environment and health experiences. DISCUSSION: We observed elevated prevalences of diseases that affected residents across the industrial zone (Fos-sur-Mer and Port-Saint-Louis-du-Rhône) compared to those living outside (Saint-Martin-de-Crau), and qualitative evidence of how residents made sense of their health experiences strengthening an understanding of their own empirical observations which helps to produce knowledge about health in an industrial context. The results of the workshops show an important benefit from the co-production of local knowledge. CONCLUSION: We encourage future researchers to do in-depth, community-based research to comprehensively describe the health of residents in other heavily polluted zones, product local knowledge and to help identify policy solutions, engender trust among the local people, and identify opportunities for intervention.

[Health care safety: The discrepancies between experience and degree of satisfaction of hospitalized patients observed in interviews performed by user representatives]. / La sécurité liée aux soins : écarts entre l'expérience et la satisfaction de patients hospitalisés à partir d'entretiens menés par des représentants d'usagers.

INTRODUCTION: The purpose of this article is to present the results of a qualitative survey conducted by user representatives (URs) focusing on the health care safety experience of hospitalized patients. The authors wished to identify factors associated with safety of care and, more specifically, with the possibly ominous medical events reported by patients. METHODS: After being trained with these objectives in mind, eight URs conducted semi-directive interviews with fourteen patients hospitalized in eleven separate hospital units in nine different hospitals. RESULTS: Eight types of factors consisting in 30 contributing factors liable to be reported by patients were identified: 1) factors related to patients' basic needs; 2) personalization of care; 3) professional factors; 4) organizational factors; 5) communication factors; 6) caregiver responsiveness; 7) infectious risks; 8) continuity of care. Patients' overall feelings about their hospitalization remained excellent notwithstanding more tempered, even negative experiences. CONCLUSION: This paradoxical result shows that the patients' actual experience is far more instructive than their degree of satisfaction. In light of this study, the acceptability of this type of research (i.e. research conducted by URs) is excellent and it also appears highly feasible, whatever the limitations imposed by organizational considerations.

Impacts of a Support Intervention for Zimbabwean and Sudanese Refugee Parents: "I Am Not Alone".

Knowledge about the beneficial effects of social support has not been used to systematically develop and evaluate interventions to help refugee new parents cope. The purpose of this study was to design and evaluate a social support intervention for refugee new parents. A multi-method research design was used and participatory research strategies were employed. Qualitative and quantitative measures were used to understand experiences of participants and to assess the perceived psychosocial and health-related outcomes of the intervention. Mentored support groups, matched by gender and ethnicity, met biweekly over 7 months. The participants were 48 Sudanese and 37 Zimbabwean refugee parents in 2 Canadian provinces. Increases were found in informational support, spousal support, community engagement, coping, and support-seeking. Decreases were found in parenting stress, loneliness, and isolation. The authors conclude that there is a need for culturally appropriate nursing practices and programs for refugee new parents from diverse cultures.

Les connaissances concernant les effets bénéfiques du soutien social n'ont pas été utilisées de manière systématique pour élaborer et évaluer les interventions visant à aider les réfugiés nouveaux parents à s'adapter à leur situation. L'objectif de cette étude est de concevoir et d'évaluer une intervention pour venir en aide aux réfugiés nouveaux parents. Diverses méthodes de recherche et différentes stratégies de recherche participative ont été utilisées pour la réalisation de l'étude. Des mesures quantitatives et qualitatives ont été effectuées pour comprendre l'expérience vécue par les participants et pour évaluer les résultats perçus de l'intervention sur les plans psychologique et de la santé. Des groupes de soutien encadrés et formés en fonction du sexe et de l'ethnie se sont réunis toutes les deux semaines pendant sept mois. L'ensemble des nouveaux parents participants comprenait 48 réfugiés soudanais et 37 réfugiés zimbabwéens établis dans deux provinces canadiennes. Ces groupes ont donné lieu à un accroissement du soutien informationnel, du soutien conjugal, de la participation communautaire, de l'adaptation et des demandes d'aide, ainsi qu'à une diminution du stress, de la solitude et de l'isolement des parents. En conclusion de leur étude, les auteurs signalent la nécessité d'adopter des programmes et des pratiques de soins infirmiers adaptés sur le plan culturel aux besoins des réfugiés nouveaux parents appartenant à diverses cultures.

Integrating knowledge systems for holistic approaches to addressing knowledge and health inequities: combining fuzzy cognitive maps.

This paper describes fuzzy cognitive mapping as an accessible and robust tool to strengthen community engagement in health promotion research. We outline how fuzzy cognitive mapping can combine, compare, and contextualize knowledge and priorities from diverse population groups as well as from evidence syntheses. We present procedures to represent a shared perspective across populations or population groups through reconciling maps by simple or weighted averaging. We present a novel second approach to reconciling derived from discourse analysis. We then present two procedures to contextualize one knowledge in another knowledge. The first procedure draws on Bayesian updating, providing a formal way to account for stakeholder knowledge in contextualizing other knowledge sources, including evidence syntheses. A second approach compares discourse patterns across maps derived from different sources. We provide examples of each procedure, describe how each may contribute to greater incorporation of patient- and community-level input in decision-making, and share tools for researchers interested in applications of fuzzy cognitive mapping.

5Minutes4Myself: Development of a Wellness Program for Caregivers of Children with Autism.

Background. Many caregivers of autistic children experience increased stress, and diminished health often due to the caregiving demands. Purpose. The project aim was to design a feasible and sustainable wellness program tailored to these caregivers' lives. Methods. In this collaborative research-informed project, participants (N = 28) were mostly female, white, and well-educated. In focus groups, we delineated lifestyle issues, then designed, delivered and assessed an initial program with one cohort; and repeated this process with a second group. Findings. Focus group data were transcribed then coded qualitatively to inform following steps. Data analysis identified lifestyle issues key to program design, desired program elements, and after program delivery, affirmed elements and recommended changes. The team used meta-inferences to guide program revisions after each cohort. Implications. Caregivers viewed resulting 5Minutes4Myself program as filling a significant service gap; its hybrid design used in-person coaching and a habit-building app with mindfulness content to support lifestyle change.

Participatory Research with Persons who Experience Mental Illness in Occupational Therapy: A Scoping Review.

Background. Persons who experience mental illness also face stigma and discrimination that frequently lead to a loss of ability to exercise autonomy and agency in their lives. Purpose. The range and breadth of literature exploring participatory research with persons living with mental illness are unknown in occupational therapy and occupation science. We initiated this study to fill this gap in the existing occupational therapy and occupational science literature. Method. Using the method of Arksey and O'Malley, we have conducted a scoping review to identify the range and breadth of literature. A qualitative content analysis was performed. Findings. A total of 34 articles were included in the narrative synthesis. The content analysis led to three related themes from the included studies: (1) coming together; (2) unique potential of participatory research; and (3) challenges in conducting participatory research. Conclusions. This review highlights that participatory research is well suited to research conducted with persons living with mental illness to support meaningful engagement and minimize stigma throughout the research process. This review can guide future participatory research and practice in occupational therapy and occupational science with persons living with mental illness.

Participatory Methods to Develop Health Education for PW-SCI: Perspectives on Occupational Justice.

Background. Many people with spinal cord injury (PW-SCI) in the Gaza Strip in Palestine are discharged from inpatient rehabilitation with limitations in their ability to meet basic needs, and reach their full potential. There is limited evidence of how clinicians can promote occupational justice for PW-SCI. Purpose. To describe participants' perspectives revealed during a participatory action research (PAR) process used to develop an education manual for PW-SCI in Gaza, using Participatory Occupational Justice as a lens. Methods. Following ethical approval, a four-step PAR design was utilized by eight researchers to co-construct the Spinal Cord Injury Activities of Daily Living-education Manual with 54 participants from SCI rehabilitation settings in Gaza. Qualitative data from eight focus groups were analyzed using inductive thematic analysis. Findings. Two main themes were evident in the participants' viewpoints: Enabling occupational justice and Removing barriers to occupational justice. Implications. Occupational justice is a central value that needs to be considered when developing occupational therapy educational interventions for this client group. PW-SCI health education may facilitate occupational justice in practical and culturally relevant ways when participatory methods are used to develop educational resources.

Leisure Possibilities of Adults Experiencing Poverty: A Community-Based Participatory Study.

Background. Poverty disproportionally affects persons with disabilities, elderly individuals and racialized groups. Leisure, play and rest are not prioritized in either services for or research with people living in poverty. Purpose. This study aims to examine the facilitators and barriers to participation in meaningful leisure activities for adults living in poverty. Method. We used community-based participatory research and art-based elicitation strategies with 39 service users at a food security organization. Findings. Individuals experiencing poverty value and engage in a variety of free and affordable leisure activities, but they are not afforded the necessary leisure opportunities, accommodations and supports as the general population. We co-created a map of local leisure resources to foster collective capacity in leisure planning, and to support organizations working with this population. Implications. Occupational therapists can work alongside members of underserved communities to uncover and address the systemic and local contextual barriers to engagement in leisure activities.

Annual gatherings as an integrated knowledge translation strategy to support local and traditional food systems within and across Indigenous community contexts: a qualitative study.

Integrated knowledge translation (IKT) and community-based participatory research (CBPR) are recognized as effective approaches when Indigenous and non-Indigenous partners work together to focus on a common goal. The "Learning Circles: Local Healthy Food to School" (LC:LHF2S) study supported the development and implementation of Learning Circles (LC) in 4 Canadian Indigenous communities with the goal of improving local, community-based healthy food systems. Critical to the research process were annual gatherings (AG) where diverse stakeholders (researchers, Indigenous community members, and partners) visited each community to share knowledge, experiences, and provide support in the research process. Using a qualitative, descriptive method, this paper explores how the AG supported IKT across partners. Yearly interviews involving 19 total participants (with some participating multiple times across the 4 gatherings) elicited their AG experiences in supporting local LC:LHF2S. Three themes with multiple sub-themes were identified: (a) setting the stage for IKT (importance of in-person gatherings for building relationships across partners, learning from each other), (b) enabling meaningful engagement (aligning research with Indigenous values, addressing tensions and building trust over time, ensuring flexibility, and Indigenous involvement and leadership), and (c) supporting food system action at the local level (building local community engagement and understanding, and integrating support for implementation and scale-up of LC). This paper provides useful and practical examples of the principles of Indigenous-engaged IKT and CBPR in action in healthy, local, and traditional food initiatives. AG are a valuable IKT strategy to contribute to positive, transformative change and ethical research practice within Indigenous communities.

Maturing conversations: developing climate engagement through group dialogues.

Climate change is a threat to global ecosystems, societies and psychological well-being. As a collectively driven phenomena, I argue that it requires collective responses and action. In order to ease the trauma of awakening to, and engaging with, climate and ecological breakdown, I suggest that individuals and communities need to build safe containers and establish support to help us recognize resistance, explore defences and feel into the territory beyond the known and familiar. Using participatory research as a case study, this paper considers the often intense feelings of confusion, tension and fear that can be generated by climate disruption, and the developmental processes that can arise when these feelings are well supported and contained. My experience suggests that when people are given a safe facilitated space to identify and share their feelings and thoughts, fears and hopes, dreams and images with others, it stimulates a creative process of collective engagement and sense-making that has the potential to seed personal and social transformation and action. I suggest that Jungian practitioners in particular can play a valuable role by facilitating dialogues and inquiries which are attuned to collective symbolic processes and which incorporate the imaginal realm of story, dream, and image.

Le changement climatique est une menace pour les écosystèmes globaux, les sociétés et le bien-être psychologique. Je soutiens qu'en tant que phénomène mû par le collectif, il requiert des réponses et des actions collectives. Afin d'alléger le traumatisme de s'éveiller à et de s'impliquer dans la décomposition du climat et de l'écologie, je suggère que les individus et les communautés ont besoin de construire de bons contenants et d'établir du soutien pour aider à reconnaitre les résistances, pour explorer les défenses et pour s'aventurer dans le territoire situé au-delà du connu et du familier. Utilisant la recherche participative comme étude de cas, cet article prend en compte les processus développementaux et les conséquences qui peuvent survenir quand les émotions souvent intenses de confusion, de tension et de peur générées par l'implication avec les réalités de changer les mythes culturels et les manières de vivre sont bien soutenues et bien contenues. Mon expérience suggère que quand on donne aux personnes un espace sûr et cadré par un facilitateur afin d'identifier et de partager leurs émotions et leurs pensées, leurs peurs et leurs espoirs, leurs rêves et images avec d'autres, cela stimule un processus créatif d'implication collective et de recherche de sens, qui a le potentiel pour semer des graines de transformation sociale et personnelle et d'action. Je suggère que les praticiens Jungiens en particulier peuvent jouer un rôle appréciable en facilitant des dialogues et des recherches, qui sont dans l'accordage des processus symboliques collectifs et qui incorporent le domaine imaginal du récit, du rêve et de l'image.

El cambio climático es una amenaza a los ecosistemas globales, a las sociedades y al bienestar psicológico. Como fenómeno colectivo sostengo que el mismo requiere de respuestas y acciones colectivas. Sugiero que, para aliviar el trauma de despertar e interactuar con la crisis climática y ecológica, individuos y comunidades necesitan construir espacios seguros de contención y establecer formas de apoyo que posibiliten el reconocimiento de las resistencias, defensas y sentimientos hacia el territorio más allá de lo familiar y conocido. Utilizando como estudio de caso la investigación participativa, el presente trabajo considera los procesos y resultados que pueden emerger cuando los sentimientos a menudo intensos, de confusión, tensión y miedo generados por el involucramiento con la realidad de mitos culturales y estilos de vida cambiantes son contenidos y reciben un adecuado sostén. Mi experiencia sugiere que cuando a las personas se les ofrece un espacio seguro y facilitador para identificar y compartir sus sentimientos y pensamientos, miedos y esperanzas, sueños e imágenes con otros, se estimula un proceso creativo de participación colectiva y producción de sentido que tiene el potencial de sembrar la transformación y acción personal y social. Sugiero que analistas Junguianos en particular pueden jugar un rol valioso en la facilitación de estos diálogos e indagaciones, que están en sintonía con procesos simbólicos colectivos e incorporan la dimensión imaginal de la narrativa, las imágenes y los sueños.

Participation in Community Gardening: Sowing the Seeds of Well-Being: Participation au jardinage communautaire : pour semer les graines du bien-être.

BACKGROUND.: Sustaining well-being challenges people with serious mental health issues. Community gardening is an occupation used to promote clients' well-being, yet there is limited evidence to support this intervention. PURPOSE.: This paper examines how facilitated community gardening programs changed the subjective well-being and social connectedness of people living with mental health issues. METHOD.: A community-based participatory research approach and qualitative methods were used with 23 adults living in supported housing and participating in supported community gardening programs. A constructivist approach guided inductive data analysis. FINDINGS.: Participation in community gardening programs enhanced well-being through welcoming places, a sense of belonging, and developing positive feelings through doing. The connection to living things and responsibility for plants grounded participants in the present and offered a unique venue for learning about gardening and themselves. IMPLICATIONS.: Practitioners and service-users should collaborate to develop leadership, programs, places, and processes within community gardens to enhance well-being.

Professional identity and emerging occupational therapy practice: An autoethnography.

BACKGROUND.: Research about occupational therapy practice in the community with people who have been imprisoned remains limited and may be considered an emerging area of practice. PURPOSE.: This paper provides a critical, first-person account about emerging occupational therapy practice with men transitioning to the community post-imprisonment. The practice context is described and reflected on from the lens of a new graduate. METHODS.: Autoethnography draws meaning from reciprocal interactions between an individual and a culture. Data was collected by the primary author through reflective journal entries and process notes pertaining to a Photovoice project. Iterative application of established evaluative criteria served as a framework in an analytical writing process. FINDINGS.: Autethnography promoted self-reflection and professional development while Photovoice provided an evidence-based framework in an emerging setting. IMPLICATIONS.: Current occupational therapy theories and models have limited applicability to inform practice with marginalized populations potentially benefitting from participatory research (e.g., Photovoice) and autoethnography.

Alaska Native Elders' Perspectives on Physical Activity and Successful Aging.

L'activité physique est généralement considérée comme un facteur contribuant de façon significative au vieillissement réussi d'une personne. Certains groupes n'ont cependant pas été suffisamment représentés dans les discussions sur l'activité physique et le vieillissement, particulièrement ceux provenant d'horizons culturels différents. Dans cet article, nous explorons comment les aînés autochtones de l'Alaska perçoivent le rôle de l'activité physique au cours de leur vieillissement et la contribution de l'activité physique au vieillissement réussi. Les entretiens semi-structurés menés auprès de 41 aînés ont montré que l'activité physique n'était pas seulement perçue comme une responsabilité personnelle en vue du maintien d'une bonne santé lors du vieillissement, mais aussi comme un moyen de résister à l'opinion répandue voulant que les personnes âgées soient dans une phase de déclin. Pour ces aînés, être physiquement actif, peu importe l'âge, était vu comme un moyen pour améliorer ou maintenir leur état physique, mental, émotionnel ou spirituel, et permettrait de participer aux activités de subsistance qui sont rattachées à leur culture et aux rôles ancestraux qui leur sont reconnus.Physical activity is widely considered to be a significant contributing factor to how "successfully" one ages. There are, however, certain groups whose voices have not been widely heard in discussions around physical activity and aging, particularly those from diverse cultural backgrounds. In this research, we explored how Alaska Native Elders perceive the role of physical activity as they age and its contribution to successful aging. Based on semi-structured interviews with 41 Elders, the results show that engaging in physical activity was not just seen as a personal responsibility to maintain health and age successfully, but also as a way to resist Western society's dominant view of older adults as deteriorating and declining by being physically active regardless of age; to improve or maintain their physical, mental, emotional, and spiritual health; and/or to enable them to continue participating in subsistence activities that are rooted in their culture and traditional roles as Elders.

"Nothing About Us, without Us." How Community-Based Participatory Research Methods Were Adapted in an Indigenous End-of-Life Study Using Previously Collected Data.

La recherche en santé autochtone au Canada a été négligée dans le passé et qualifiée de problématique, notamment en raison du manque de collaboration avec les peuples autochtones. L'Énoncé de politique des trois Conseils sur l'éthique de la recherche avec des êtres humains décrit au chapitre 9 la conduite éthique de la recherche axée sur les Premières nations, les Inuits et les Métis. Les principes PCAP® des Premières nations (propriété, contrôle, accès et possession) soulignent l'importance majeure de l'engagement et de la gouvernance autochtones. En vue d'assurer que les buts et les activités de la recherche développée soient réalisés en partenariat complet et significatif avec les peuples et les communautés autochtones, il est possible de faire appel à des méthodes de recherche participative communautaire (RPC) intégrant leur plein engagement. Les recherches utilisant des ensembles de données secondaires, telles que les données administratives sur la santé recueillies en routine, ne devraient plus être exclues de cette approche. Notre objectif était de décrire comment notre équipe de chercheurs universitaires, alliée à un organisme national de santé autochtone, a adapté les méthodes de RPC dans le cadre d'un projet de recherche utilisant des données recueillies antérieurement pour examiner les lacunes dans la prestation de soins de fin de vie aux peuples autochtones en Ontario. Nous décrivons le processus d'élaboration de ce partenariat de recherche et expliquons comment l'intégration des principes de base et des processus de formation du savoir autochtones ont guidé cette collaboration. Notre partenariat de recherche, qui implique l'adaptation de méthodes de RPC, illustre un processus d'engagement qui pourrait guider d'autres chercheurs désirant mener des recherches en santé autochtone à l'aide de données déjà recueillies. Nous faisons aussi état d'une entente de recherche transparente, négociée équitablement entre un organisme national de santé autochtone et des chercheurs, qui pourrait servir de cadre pour des collaborations de recherche similaires. Il est essentiel de s'assurer que les perspectives autochtones soient au cœur des processus de recherche et qu'elles soient reflétées dans ceux-ci lorsque des données administratives sur la santé sont utilisées.Indigenous health research in Canada has a chequered past and has been identified as problematic and lacking in appropriate collaboration with Indigenous people. The Tri-Council Policy Statement on Ethical Conduct for Research Involving Humans, Chapter 9 describes ethical conduct of research regarding First Nations, Inuit, and Métis Peoples. First Nations Ownership, Control, Access, and Possession (OCAP®) Principles highlight the necessity of Indigenous engagement and governance. To ensure that the aims and activities of the research being developed are in full and meaningful partnership with Indigenous peoples and communities, community-based participatory research (CBPR) methods provide a process in which full engagement is possible. Research utilizing secondary data sets, such as routinely collected health administrative data, should no longer be excluded from this approach. Our aim was to describe how our research team of academic researchers and a national Indigenous health organization adapted CBPR methods in a research project using previously collected data to examine end-of-life health care service delivery gaps for Indigenous people in Ontario. We describe the process of how we developed our research partnership and how grounding principles and Indigenous ways of knowing guided our work together. Through the adaptation of CBPR methods, our research partnership illustrates a process of engagement that can guide others hoping to conduct Indigenous health research using previously collected data. We also present a transparent research agreement negotiated equally by a national Indigenous health organization and research scientists, which can also be used as a framework for others wishing to establish similar research partnerships. Ensuring that Indigenous perspectives are central to and reflected in the research process is essential when using health administrative data.

Initiating Participatory Action Research with Older Adults: Lessons Learned through Reflexivity.

La recherche-action participative (RAP) apporte une perspective intéressante pour la recherche abordant l'exclusion et l'inclusion sociale des personnes âgées. Les exemples et réflexions sur la RAP impliquant des personnes âgées sont rares, en particulier à l'étape de l'initiation de la recherche, lorsque l'action participative cyclique est mise en place. Dans cet article, nous décrivons le démarrage d'un projet de recherche-action participative avec des personnes âgées et analysons la concordance entre ce processus et les principes clés de la participation, ainsi que son arrimage aux structures de recherche typiques. Les résultats soulignent les tensions entre le développement de relations de plus long terme et les demandes de financement préparées dans de courts délais. Cette étude montre comment les conceptions traditionnelles de la recherche peuvent influer sur la création de partenariats équitables et met en évidence la nécessité d'élaborer des lignes directrices en matière d'éthique et de publications qui traitent explicitement des approches participatives. Ces observations clés pourront être appliquées pour utiliser les potentialités de la recherche-action participative, qui consiste à aborder les enjeux importants à travers un travail collaboratif et une approche équitable intégrant les personnes les plus affectées.Participatory action research (PAR) is well suited to research that aims to address social exclusion and inclusion in older age. Illustrations of and reflections on PAR with older adults are scarce, particularly the initiation stage, which sets the stage for the cyclical participatory action that follows. In this article, we describe the initiation of a PAR project with older adults and reflect on the alignment of this process with key participatory principles and fit within typical research structures. Findings point to the tensions between developing relationships over time and time-sensitive calls for funding, how traditional conceptions of research can influence creating equitable partnerships, and the need for development of ethical and publishing guidelines that address participatory approaches. These key insights can be applied to help achieve the potential of PAR: to address issues of concern by collaboratively and equitably working with the people most affected.

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 ¼ (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.

Pesquisa participativa sob a lógica do cuidado: análise compartilhada em um CAPS AD / Participatory research under the logic of care: Shared analysis in a CAPS AD / La recherche participative sous la logique du soin: analyse partagée dans un CAPS AD / Investigación participativa bajo la lógica del cuidado: análisis compartido en un CAPS AD

A pesquisa procurou explorar as experiências de adoecimento com base no ponto de vista dos usuários de um CAPS AD III. A metodologia empregada neste estudo se baseia em um desenho qualitativo e se divide em duas etapas. Na primeira, foi realizada uma entrevista semiestruturada com os participantes — Entrevista Narrativa de Adoecimento McGill-MINI —, e, na segunda, os participantes foram parte integrante do processo de validação, análise dos resultados e elaboração do arcabouço temário. Os resultados anunciam narrativas atravessadas por desamparo psíquico, abandono familiar, perdas e falta de credibilidade, efeito de um processo excludente em que a droga se sobrepõe ao sujeito. A pesquisa participativa sob a lógica do cuidado (Tangvald-Pedersen & Bongaardt, 2016) possibilitou um diálogo reflexivo acerca da experiência de adoecimento aproximando pesquisadores e participantes, que são como diferentes contadores de histórias, permitindo que a tessitura do fenômeno descrito pudesse enriquecer a compreensão uns dos outros.

Resumos This research explores the experiences of illness from the point of view of users of a CAPS AD III. Based on a qualitative design, the study comprised two stages: in the first, a Narrative Interview of Illness McGill-MINI, a semi-structured interview protocol, was carried out with the participants; in the second, the participants took part in the validation process, analysis of results and elaboration of the thematic framework. The results reveal narratives crossed by psychic helplessness, family abandonment, losses, and lack of credibility — the effect of an excluding process in which the drug overrides the subject. Participatory research under the logic of care (Tangvald-Pedersen & Bongaardt, 2016) enabled a reflective dialogue on the experience of illness, bringing together researchers and participants as different storytellers, allowing the weaving of the phenomenon to enrich their mutual understanding.

Cette recherche explore les expériences de la maladie du point de vue des utilisateurs d'un CAPS AD III. Basée sur un design qualitatif, l'étude s'est déroulée en deux étapes : dans la première, un entretien narratif semi-structurée (Narrative Interview of Illness McGill-MINI) a été réalisée avec les participants; dans la seconde, les participants ont pris part au processus de validation, d'analyse des résultats et d'élaboration du cadre thématique. Les résultats révèlent des récits traversés par l'impuissance psychique, l'abandon familial, les pertes et le manque de crédibilité — l'effet d'un processus d'exclusion dans lequel la drogue chevauche le sujet. La recherche participative sous la logique du soin (Tangvald-Pedersen & Bongaardt, 2016) a permis un dialogue réflexif sur l'expérience de la maladie, réunissant chercheurs et participants comme des différents conteurs, permettant au tissage du phénomène d'enrichir leur compréhension mutuelle.

La investigación buscó explorar las experiencias de enfermedad a partir del punto de vista de los usuarios de CAPS AD III. La metodología utilizada en este estudio se basa en un diseño cualitativo y se divide en dos etapas. En la primera, se realizó una entrevista semiestructurada con los participantes — Entrevista Narrativa de Enfermedad McGill-MINI — y, en la segunda, los participantes fueron parte integral del proceso de validación, análisis de resultados y elaboración del marco temático. Los resultados anuncian narrativas atravesadas por el desamparo psíquico, el abandono familiar, las pérdidas y la falta de credibilidad, efecto de un proceso excluyente en el que la droga se superpone al sujeto. La investigación participativa bajo la lógica del cuidado (Tangvald-Pedersen & Bongaardt, 2016) permitió un diálogo reflexivo sobre la experiencia de la enfermedad, reuniendo a investigadores y participantes, que son como diferentes narradores, permitiendo que la tesitura del fenómeno descrito pudiera enriquecer la comprensión de cada uno.

Familiares como pesquisadores de serviços de atenção psicossocial: um desafio para a promoção do cuidado e autonomia na perspectiva do recovery / Family members as researchers of psychosocial care services: Challenges for the promotion of care and autonomy in recovery / Les membres de la famille en tant que chercheurs des services de soins psychosociaux: un défi pour la promotion des soins de santé et de l'autonomie dans la perspective du recovery / Los familiares como investigadores de los servicios de atención psicosocial: un desafío para la promoción del cuidado y la autonomía en la perspectiva de recuperación

O presente estudo discute a inserção de familiares cuidadores de pessoas com transtornos mentais graves e persistentes em uma pesquisa acadêmica de modelo participativo. O estudo se apoia no conceito de recovery para discutir a participação ativa de familiares no processo de avaliação dos serviços de saúde mental e de produção compartilhada de conhecimento. Trata-se de uma pesquisa qualitativa que emprega instrumentos de avaliação participativa nas diferentes etapas de inserção de familiares como pesquisadores. Conclui-se sobre o protagonismo de familiares no desenvolvimento de pesquisas como uma ferramenta potente para o recovery na medida em que amplia o conhecimento, qualifica a relação dos usuários com os serviços, fortalece os vínculos sociais e o compartilhamento de experiências e favorece processos emancipatórios e democráticos de controle social.

This qualitative study discusses the inclusion of family caregivers of people with severe and persistent mental disorders in a participatory academic research. Based on the concept of recovery, the paper addresses the active participation of family members in the evaluation process of mental health services and shared knowledge production. Data was collected by means of participatory assessment instruments in the different stages of inserting family members as researchers. In conclusion, the protagonism of family members in research development is a powerful tool for recovery as it expands knowledge, qualifies user relationship with services, strengthens social bonds and the sharing of experiences, and favors emancipatory and democratic processes of social control.

Cette étude qualitative traite de l'inclusion des aidants de personnes atteintes de troubles mentaux sévères et persistants dans une recherche universitaire participative. Basé sur le concept de rétablissement, l'article aborde la participation active des aidants dans le processus d'évaluation des services de santé mentale et la production de connaissances partagées. Les données ont été collectées au moyen d'instruments d'évaluation participative dans les différentes étapes de l'insertion des membres de la famille en tant que chercheurs. En conclusion, le protagonisme des membres de la famille dans le développement de la recherche est un outil puissant pour le rétablissement car il élargit les connaissances, qualifie la relation de l'utilisateur avec les services, renforce les liens sociaux et le partage d'expériences, et favorise les processus émancipateurs et démocratique de contrôle social.

El presente estudio discute la participación de los cuidadores familiares de personas con trastornos mentales graves y persistentes en una investigación académica de modelo participativo. El estudio utiliza el concepto de recuperación para discutir la participación activa de los familiares en el proceso de evaluación de los servicios de salud mental y producción de conocimiento compartido. Esta es una investigación cualitativa que utiliza instrumentos de evaluación participativa en las diferentes etapas de inserción de los familiares como investigadores. Se concluye que el protagonismo de los familiares en el desarrollo de la investigación es una poderosa herramienta de recuperación, ya que amplía el conocimiento, califica la relación de los usuarios con los servicios, fortalece los vínculos sociales y el intercambio de experiencias, y favorece los procesos emancipatorios y democráticos de control social.

Implementation of resources to support patient physical activity through diabetes centres in Nova Scotia: the effectiveness of enhanced support for exercise participation.

OBJECTIVE: The purpose of this study was to determine the effectiveness of enhancing support for physical activity counselling and exercise participation at diabetes centres in Nova Scotia on physical activity and exercise behaviours and clinical outcomes in patients with type 2 diabetes mellitus. METHODS: In all, 180 patients at 8 diabetes centres participated in this observational study. A range of enhanced supports for exercise were offered at these centres. A kinesiologist was added to the diabetes care team to primarily provide extra physical activity counselling and exercise classes. Patient physical activity and exercise levels, efficacy perceptions and mean glycated hemoglobin (A1C) were evaluated at baseline and 6 months. We compared changes in these variables for patients who participated in the enhanced supports versus patients who did not. RESULTS: Participants who attended exercise classes (n=46), increased moderate physical activity by 27% and doubled resistance exercise participation (1.0±1.8 to 2.0±2.1 days per week) whereas those who did not attend exercise classes (n=49) reduced moderate physical activity by 26% and did not change resistance exercise participation (interactions, p=0.04 and p=0.07, respectively). Patients who received resistance band instruction (n=15) from a kinesiologist had reductions in A1C (from 7.5±1.4 to 7.1±1.2; p=0.04), whereas other subgroups did not have significant changes in A1C. CONCLUSIONS: Offering enhanced support for exercise at diabetes centres produced improvements in physical activity and exercise in type 2 diabetes patients. Resistance band instruction from a kinesiologist combined with participating in a walking and resistance training program improved glycemic control, which underscores the importance of including exercise professionals in diabetes management.

Pesquisa-intervenção, políticas públicas e movimentos sociais: uma experiência junto à população em situação de rua / Intervention research, public policies and social movements: an experience with the homeless population / Investigación-intervención, políticas públicas y movimientos sociales: una experiencia junto a personas sin hogar / Recherche intervention, politiques publiques et mouvements sociaux: une expérience avec la population sans abri

Este artigo apresenta uma experiência de pesquisa-intervenção que teve como objetivos conhecer a população adulta em situação de rua; mapear e conhecer o funcionamento das políticas públicas para esta população; identificar as violações de direitos humanos e conhecer o cotidiano destas pessoas. Com base nos marcos teórico-metodológicos da Análise Institucional e da Cartografia, o trabalho de campo considerou diferentes estratégias metodológicas em cenários institucionais e na cidade, que geraram dados sobre as principais dificuldades vividas, itinerários institucionais e estratégias desenvolvidas por estas pessoas em várias políticas públicas, identificando e colocando em análise as linhas duras (instituído) e as linhas flexíveis (instituinte) nas relações com o Estado. A pesquisa-intervenção promoveu visibilidade às principais questões vividas por este segmento vulnerável, bem como fomentou sua organização política e empoderamento, com vistas à garantia de direitos.

This article presents a research-intervention experience that had as objectives to know the adult population in homeless situation; map and know the operation of public policies for this population; to identify the violations of human rights and to know the daily life of these people. Based on the theoreticalmethodological frameworks, Institutional Analysis and Cartography, the field work considered different methodological strategies in institutional settings and in the city that generated data about the main difficulties, institutional itineraries and strategies developed by these people in the various public policies, identifying and analyzing the hard lines (instituted) and flexible lines (institute) in relations with the State. The intervention research promoted visibility of the main issues faced by this vulnerable segment, as well as fostered its political organization and empowerment with a view to guaranteeing rights.

Este artículo presenta una experiéncia de investigaciónintervención que intentó conocer la población adulta en situación de calle; mapear y conocer el funcionamiento de las políticas públicas para esta población; identificar las violaciones de derechos humanos y conocer el cotidiano de estas personas. Con base en los marcos teórico-metodológicos del Análisis Institucional y Cartografía, el trabajo de campo consideró diferentes estrategias metodológicas en escenarios institucionales y en la ciudad que generaron dados sobre las principales dificultades, itinerarios institucionales y estrategias desarrolladas por estas personas en varias políticas públicas, identificando y poniendo en análisis las líneas duras (instituido) y las líneas flexibles (instituyente) en las relaciones con el Estado. La investigaciónintervención promovió visibilidad las principales cuestiones vividas por este segmento vulnerable, así como fomentó su organización política y empoderamiento con miras a garantía de derechos.

Cet article présente une expérience de recherche-intervention visant à connaître la population adulte sans abri, à cartographier et à connaître le fonctionnement des politiques publiques en faveur de cette population. Elle vise également à découvrir les violations des droits de l'homme et à connaître la vie quotidienne de ces personnes. Basé sur les cadres théoriques et méthodologiques de l'analyse institutionnelle et de la cartographie, le travail empirique a examiné différentes stratégies méthodologiques dans les contextes institutionnels et dans la ville. Ceux-ci ont généré des données sur les principales difficultés rencontrées, les itinéraires institutionnels et les stratégies développées par ces personnes dans différentes politiques publiques, en identifiant et en analysant les lignes rigides (instituées) et flexibles (institut) dans les relations avec l'État. La recherche-intervention a favorisé la visibilité des principaux problèmes rencontrés par ce segment vulnérable, ainsi que son organisation politique et son autonomisation en vue de garantir des droits.