"You get to understand we are all human beings": Community solidarity initiatives as spaces of recognition, resistance, and change.

In Ireland the Direct Provision system segregates and excludes displaced people from the host community, and informal community solidarity initiatives (CSIs) were established nationwide to address this issue. We examined experiences of intergroup contact in CSIs and related contexts to identify how solidarity is produced, and for whom, through photovoice workshops (Study 1: n = 13) with displaced participants of two CSIs, and interviews (Study 2: n = 5) with resident/national stakeholders of four CSIs. In Study 1, we identified three themes: "Orienting to future and collective identities in Direct Provision," "Negotiating intersectional identities in public settings," and "Recognition of valued collective identities in the CSI." In Study 2, we identified two themes: "Negotiating privileged identities and power asymmetries," and "Facilitating change through social connections." CSIs offered temporary respite from the oppression and discrimination displaced people experienced in other contexts and enabled them to resist dehumanizing representations through expression and recognition of valued identities. Connections within and across groups fostered relational solidarity, shifted intergroup norms, and opened opportunities for displaced people to access resources. Accordingly, our findings have implications for public policy, community research, and action to create just and equitable conditions for displaced people in receiving countries.

Optimising the performance of frontline implementers engaged in the NTD programme in Nigeria: lessons for strengthening community health systems for universal health coverage.

BACKGROUND: The control and elimination of Neglected Tropical Diseases (NTDs) is dependent on mass administration of medicines (MAM) in communities and schools by community drug distributers (CDDs) who are supported and supervised by health facility staff (FLHF) and teachers. Understanding how to motivate, retain and optimise their performance is essential to ensure communities accept medicines. This study aimed to capture and translate knowledge, problems and solutions, identified by implementers, to enhance NTD programme delivery at the community level in Nigeria. METHODS: Qualitative data was collected through participatory stakeholder workshops organised around two themes: (i) identification of problems and (ii) finding solutions. Eighteen problem-focused workshops and 20 solution-focussed workshops were held with FLHF, CDDs and teachers in 12 purposively selected local government areas (LGA) across two states in Nigeria, Ogun and Kaduna States. RESULT: The problems and solutions identified by frontline implementers were organised into three broad themes: technical support, social support and incentives. Areas identified for technical support included training, supervision, human resource management and workload, equipment and resources and timing of MAM implementation. Social support needs were for more equitable drug distributor selection processes, effective community sensitisation mechanisms and being associated with the health system. Incentives identified were both non-financial and financial including receiving positive community feedback and recognition and monetary remuneration. The results led to the development of the 'NTD frontline implementer's framework' which was adapted from the Community Health Worker (CHW) Generic Logic Model by Naimoli et al. (Hum Resour Health 12:56, 2014). CONCLUSION: Maximising performance of frontline implementers is key to successful attainment of NTD goals and other health interventions. As NTDs are viewed as a 'litmus test' for universal health coverage, the lessons shared here could cut across programmes aiming to achieve equitable coverage. It is critical to strengthen the collaboration between health systems and communities so that together they can jointly provide the necessary support for frontline implementers to deliver health for all. This research presents additional evidence that involving frontline implementers in the planning and implementation of health interventions through regular feedback before, during and after implementation has the potential to strengthen health outcomes.

Digital privacy is a sexual health necessity: a community-engaged qualitative study of virtual sex work and digital autonomy in Senegal.

The COVID-19 pandemic highlighted the harm reduction potential of virtual sex work (VSW) such as video or audio calls with clients. VSW limits exposure to COVID-19 and STIs. However, sex workers using digital technologies face high risks of technology-facilitated intimate partner violence (IPV), such as non-consensual distribution of intimate images. This study explored perceived risks and benefits of VSW, including the salience of STI harm reduction. Ethnographic interviews and participant observation with self-identified cis women sex workers in Dakar between January 2018 and August 2019 informed a further period of focused data collection in June 2022, in which two key research participants and the author devised a goal of concrete community benefit: a list of contextually relevant digital privacy precautions and resources. Brainstorming this list during workshops with 18 sex workers provided prompts for participant perspectives. While participants generally preferred VSW, citing STI prevention as a key reason, most resumed in-person sex work after COVID-19 curfews lifted; social risks of digital privacy breach and potential outing outweighed physical risks of contracting STIs. Participants proposed privacy features for mobile applications to make VSW viable and benefit from STI prevention. Their reflections call on tech companies to embed values of informed consent and privacy into platform design, shifting the burden of protecting privacy from individuals to companies. This study addresses a gap in technology-facilitated IPV research, which has concentrated on Euro-American contexts. Participant perspectives can inform action in technology policy sectors to advance criminalised communities' rights to sexual health, privacy, and autonomy.

Navigating the Ethical and Methodological Dimensions of a Farm Safety Photovoice Project.

Scholars have noted persistent high rates of agricultural health and safety incidents and the need to develop more effective interventions. Participatory research provides an avenue to broaden the prevailing research paradigms and approaches by allowing those most impacted to illuminate and work to solve those aspects of their lives. One such approach is photovoice, an emancipatory visual narrative approach. Yet, despite its broad appeal, photovoice can be hard to implement. In this article, we leverage our experience using photovoice for a farm children safety project to describe and reflect on the ethical and methodological aspects broadly relevant to agricultural health and safety topics. We first contextualize the tensions of navigating between photovoice, the research ethics committees (RECs) regulatory frameworks, and competing views on visual representations in agriculture. We then discuss the sources of risks to participants and researchers, how we addressed these risks, and how these risks unfolded during the research phase of the photovoice activity. We conclude with three lessons we (re)learned: the importance of collaborating with RECs, the need to increase preparation to limit psychological risks to participants and researchers, and avenues to augment the emancipatory power of photovoice in a virtual environment.

Participatory Methods in Food Behaviour Research: A Framework Showing Advantages and Disadvantages of Various Methods.

A trend is visible in the food literature showing an increasing number of publications on studies that incorporate some form of participant engagement, such as citizen science and community-based participatory research. This "participation trend" will inevitably affect the scientific field of food behaviour research. This new trend is however not only associated with advantages, and a critical reflection on both the advantages and disadvantages is needed. The current article is a position paper that contributes to the literature in two main ways. First, participation is still in the developmental stage. Many different forms, methods and definitions are used. By providing a structured overview of a variety of participatory methods derived from a focused search of the literature on food behaviour, we aim to clarify the relationships between the various forms of participation methods. Second, the involvement of citizens in research is increasingly calling for novel research methods (e.g., voluntary recruitment and active involvement), which may be accompanied by both advantages and disadvantages. We add to the literature by developing a framework that indicates the advantages and disadvantages of participatory methods in food behaviour research. Our study highlights the relevance of differentiating the goal of the researcher (efficiency versus engagement) and the role of citizens (collecting versus creating), thus implying a trade-off between cost-effectiveness and involvement, as well as between data richness and data quality. Our work is a first effort to create structure and guidance within a new area. Our efforts could be used in future research aimed at developing more extensive protocols and tools for the application of participation in research, thereby offering a controlled manner to ensure that research stays abreast of our changing society.

Walking the Line: Conducting Transect Walks in Burkina Faso.

In this article we present results from transect walks and participatory mapping done in Burkina Faso. Since the Sahelian drought of the 1970s, researchers have continued to depict the Sahelian region of West Africa as an environment experiencing severe degradation; a narrative that persists over time. Recently, however, analyses of satellite imagery have identified remarkable patterns of greening across the Sahel. The causes of this greening are hotly debated. Through this project we aim to inform these debates with on-the-ground perceptions of local farmers and pastoralists. The transect walk method is a community-based process that collects information on the land-use/land-cover (LULC) features across villages. Transects help triangulate data by combining high-resolution satellite imagery, firsthand observations, and local experiences of ecological processes. We describe the methodology behind transects and discuss how they contextualize an otherwise removed process of environmental analysis. We also describe the challenges that arise throughout the fieldwork process.

"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.

Mobility in pictures: a participatory photovoice narrative study exploring powered mobility provision for children and families.

AIM: Rehabilitation professionals are increasingly recognizing mobility as a basic human right and endorsing the efficacy of early powered mobility for children with mobility impairments to foster independence, promote socialization with peers and facilitate participation in family and community life. However, the relationship between mobility and technology provision, when considered in the context of lived experiences of children with mobility impairments and their families, is complex and understudied. Perceptions of these experiences from children's own points of view are especially limited, as is the use of participatory research methods in describing these experiences. The purpose of this study was to empower children and families as co-researchers, investigating their experiences and perspectives of powered mobility provision processes and early use of their mobility technology in their own words and images.  Methods: Two families in a major Midwest metropolitan area- one who was receiving a powered wheelchair and one who was receiving a modified powered ride-on toy car- participated as co-researchers from 2015-2016, documenting their experiences with a research camera and narrating their photos to describe meaningful or important aspects of their respective powered mobility provision processes and early use of their devices. RESULTS: Four themes emerged: (1) Dys/Function of Mobility Technology; (2) Daily Life, Play and Participation; (3) Emerging Self/Advocacy and (4) Complex Family/Industry Interplay.  Conclusions: These themes and experiences may inform further innovation in powered mobility practices, generate new hypotheses about the role of technology in shaping disability identity and demonstrate the feasibility and impact of using participatory methods more broadly in rehabilitation research. Implications for Rehabilitation Participatory methods may be a useful and underutilized research tool in describing the impact of powered mobility provision processes on child and family experiences of technology and disability. Empowering children and families as co-researchers is important to move the field of powered mobility technology forward in creating innovative, accessible and socially welcoming devices and processes. It is important to capture the similarities and differences in child and family perceptions and experiences within different models of powered mobility provision, such as traditional powered wheelchair prescription and crowdsourced ride-on toy car modification. Powered mobility provision processes and the perceptions and experiences of children and families move beyond business or medical transactions and may help shape disability identity and pride. A disability studies framework may be useful in analyzing the complexities of technology provision and the nuanced interplay between bodies and technology.

A systematic review of the use of adolescent mystery clients in assessing the adolescent friendliness of health services in high, middle, and low-income countries.

BACKGROUND: Mystery client methodology is a form of participatory research that provides a unique opportunity to monitor and evaluate the performance of health care providers or health facilities from the perspective of the service user. However, there are no systematic reviews that analyse the use of mystery clients in adolescent sexual and reproductive health (ASRH) research and monitoring and evaluation of programmes. OBJECTIVE: To assess the use of adolescent mystery clients in examining health care provider and facility performance in providing ASRH services in high, middle, and low-income countries. METHODS: We carried out a systematic review of published journal articles and reports from the grey literature on this topic from 2000 to 2017 (inclusive). Thirty research evaluations/studies were identified and included in the analysis. We identified common themes through thematic analysis. RESULTS: The findings reveal that researchers and evaluators used mystery client methodology to observe client-provider relationships, and to reduce observation bias, in government or private health facilities, NGOs, and pharmacies. The mystery clients in the evaluations/studies were young people who played varying roles; in most cases, they were trained for these roles. Most reported good experiences and friendly providers; however, some reported lack of privacy and confidentiality, lack of sufficient written/verbal information, and unfavourable experiences such as sexual harassment and judgmental comments. Female mystery clients were more likely than males to report unfavourable experiences. Generally, the methodology was considered useful in monitoring and evaluating the attitudes of health service providers and ASRH service provision. CONCLUSIONS: The research evaluations/studies in this review highlight the usefulness of mystery clients as a method to gain insight, from an adolescent perspective, on the quality of ASRH services for research and monitoring and evaluation of programmes.

Theory that explains an Aboriginal perspective of learning to understand and manage diabetes.

OBJECTIVE: To use grounded theory and participatory research methodology to explain how Aboriginal people learn to understand and manage type 2 diabetes. METHODS: Aboriginal people with diabetes were invited to participate in one of five focus groups (n=25, male=12, female=13). Focus groups and education sessions were conducted by Aboriginal members of the research team. Focus groups were audio recorded and transcribed, with coding and first level analysis undertaken by all members of the research team. RESULTS: Participants described colonisation and dislocation from Country and family members' experiences with diabetes as significant historical influences which, in conjunction with the model of care experienced and the type of interaction with health services, shaped how they came to understand and manage their diabetes. CONCLUSIONS: Patient experience of a model of care alone is not what influences understanding and management of diabetes in Aboriginal people. Implications for Public Health: Health service improvements should focus on understanding past experiences of Aboriginal patients, improving interactions with health services and supporting holistic family centred models of care. Focusing on just the model of care in absence of other improvements is unlikely to deliver health benefits to Aboriginal people.

Unravelling migrants' health paradoxes: a transdisciplinary research agenda.

The Social Determinants of Health literature has consistently found that a higher socioeconomic status is associated with better health outcomes even after adjusting for traditional risk factors. However, research findings in the field of Migrants' Health suggest that the socioeconomic/health gradient does not always behave as expected for migrants and their descendants. The mismatch of findings in these two long-standing parallel research traditions is exemplified by frequent reports of paradoxical findings in the scientific literature: the healthy migrant paradox, the ethnic density paradox and the diminishing returns paradox. This paper outlines a transdisciplinary research agenda to elucidate the social processes that underpin these disconcerting findings and calls for a shift from a pathogenic deficit model that sees migrants as a burden to their reconceptualisation as actively engaged citizens in search of solutions. Amidst a severe refugee crisis, fears of terrorist attacks and political capitalisation of these tragedies to foster antimigrant sentiments, this is urgently needed.

The heroines of their own stories: Insights from the use of life history drawings in research with a transnational migrant community.

In this paper, we discuss how life history drawings can serve as a valuable method for global health research. The introduction discusses qualitative approaches to concepts such as reliability, validity and triangulation, and situates the use of participatory visual methods within the broader field of participatory research. The paper reports on an experience using life history drawings as part of extended ethnographic research in rural Mexico and among Mexican migrants living in Atlanta. The primary method for that parent project was comparative ethnographic research, which included life histories collected from 13 pairs of women over 15 months of participant observation. Early in the research, the drawings contributed to a major reorientation in the direction of the research project. The insights generated through analysis of the life history drawings exemplify how this participatory research technique can direct attention to social processes that feel salient to community members. In this case, they called attention to the enormity of social change in this community over one generation, reorienting the study from one focused on change causes by migration to one that focused on two trajectories of change: generational and migration-related.

A Practical Framework for Navigating Ethical Challenges in Collaborative Community Research.

To effectively mobilize community-based organizations (CBOs) and international non-governmental organizations (NGOs) in research, important ethical issues must be addressed. A memorandum of understanding (MOU), providing a framework and a tool to be used for establishing effective community-research partnerships, was developed by the Community Collaboration Core (CCC) of the HIV Center for Clinical and Behavioral Studies. Aims of the CCC include: (1) Initiating and sustaining successful partnerships in HIV prevention research in areas of sexuality, gender, mental health, and of mutual benefit to communities; (2) Advancing the science of collaboration among researchers, practitioners, and government in HIV prevention. Developed and assessed over a two-year period by researchers, CBO/NGO and public health representatives, this MOU can be used by potential research and community partners to address the most important issues early in a collaborative research project. Clarifying essential roles, responsibilities, and relationships, establishing trust and transparency in that process, can guide collaborators in planning the important steps for beginning and sustaining an ethical and successful research project.

Using participatory mapping to inform a community-randomized trial of HIV counseling and testing.

Participatory mapping and transect walks were used to inform the research and intervention design and to begin building community relations in preparation for Project Accept, a community-randomized trial sponsored by the U.S. National Institute of Mental Health (NIMH). NIMH Project Accept is being conducted in five sites within four countries including Thailand, Zimbabwe, South Africa and Tanzania. Results from the mapping exercises informed decisions about the research design such as defining community boundaries, and identifying appropriate criteria for matching community pairs for the trial. The mapping also informed intervention related decisions such as where to situate the services. The participatory methods enabled each site to develop an understanding of the communities that could not have been derived from existing data or data collected through standard data collection techniques. Furthermore, the methods lay the foundation for collaborative community research partnerships.