Participatory Research Project Research Articles

Navigating Challenges in Community-based Research Aimed at Ending the HIV Epidemic Among Black Women

Our interdisciplinary team initiated a community-based participatory research project aimed at dismantling the gendered racism faced by Black women in healthcare settings that makes them vulnerable to HIV and other health conditions. During the data collection phase of the project, we encountered multiple challenges with the recruitment and enrollment of Black women in the study as well as with an influx of fraudulent responses that slowed down the research process. In this article, we discuss our research methodology followed by details of the challenges we faced and the processes we used to navigate those challenges.

Art for Social Change: Aligning Values and Actions Toward Effective Activism

This participatory action research project involved 11 members of Art for Social Change, a higher education social activism group in the United States, using art to impact social change. Through cycles of action, reflection, and dialogue, members made changes within their organization and developed a deeper understanding of themselves and each other. Co-researchers reflected on their intersectional identities and how dialogue and art making in community helped widen and deepen their connections with each other. They identified how effective activism could be achieved in their group alongside two types of ineffective activism that impeded their goals. By fostering a community culture of change, the project exemplified how authenticity, compassion, and embracing tension and uncertainty cultivates critical consciousness and growth.

Building resilience of street-connected children during COVID-19: turning rights into practices through CINI method.

This article examines the methods and opportunities for SCC's meaningful participation that recognize their agency and are aligned with General Comment No. 21 (GC21) to the United Nations Convention on the Rights of the Child (UNCRC) on Children in Street Situations (UNCRC, 1989). This article explains the application of CINI's core practice models which explains the child centrality in development practices for "turning rights into practice for children" derived from the Sustainable Development Goals, principles of Human Rights, UNCRC, and General Comment No. 20 (2016). The Institutional knowledge was practiced through child-led action research with street- connected children which resulted in the development of agency among SCC, peer researchers, and child advocates for resilience building within their community during COVID-19. Child in Need Institute (CINI) has been working with SCC since 1989 and has derived a rich body of experience from the interventions. CINI applied participatory approaches to practice, research, decision-making, and policy development; thus, facilitating children in the process of systematically gathering information with their peers, identifying key issues and problems faced by SCC, and securing support from duty bearers that were required for the survival within their situations. Drawing on the approach undertaken and the tools used in the participatory research and advocacy, this article reflects upon the processes and strategies that worked out in facilitating SCC's ability to exercise agency and resilience through evidence generation and advocacy during COVID-19 and the associated lockdown and beyond. Through capacity building on research tools, leadership and communication skills, SCC can build concrete evidence of their vulnerabilities and the gaps that pose as barriers to their access to existing support mechanisms. This evidence helps them to prioritize the solutions that are required to bring changes in their lives and that of their peers, with which they can advocate at different platforms that promote dialogs and negotiations between children and duty-bearers. A participatory research project funded by Wellcome Trust focused on the vulnerabilities faced by street-connected young people and the access to services available to them. It revealed the lack of understanding regarding SCC and their invisibility in data and planning of support services, the gaps in access to healthcare services, the social determinants of health including safety, and their exclusion in platforms for dialogs with duty bearers. They took these issues to local government leaders, service providers, and national and international advocacy platforms; and suggested solutions to local and world leaders to bring changes in their situations. This resulted in a marked increase in the responsiveness of service providers toward SCC during the period of COVID-19, and the increased agency and negotiation skills of peer leaders to support their communities and demand solutions during the period of COVID-19 and associated lockdown.

Untapped transformative potential in decentralised groundwater systems that improve households' resilience in India's water-scarce urban environments

Off-grid, decentralised water infrastructures are increasingly being promoted to help cities meet their water delivery targets and build resilient water systems in the face of changing water availability. Against this background, this paper examines how integrating off-grid, decentralised groundwater systems with centralized piped supply helps water utilities and urbanites achieve transformative resilience under conditions of chronic water scarcity in the secondary city of Tiruppur, India. Empirical findings on users' water access practices from off-grid systems like municipal or private borewells to remain resilient, their role in the everyday governance of these systems, and the costs of building resilience through borewells—obtained through a participatory action research project where 94 households recorded month-long water access using a ‘water and waste calendar’—reveal that Tiruppur's public borewells are an affordable and mostly inclusive resilience building measure but are far from being transformative. Moreover, diverse arrangements for their everyday governance unevenly enable user participation, impose invisible costs on female members of borewell-reliant households, and create differentiation in service quality across the city. The paper argues that the potential to achieve transformative resilience through off-grid sources like borewells remains untapped in Tiruppur and concludes with some reflections to pursue just and inclusive resilience.

Leveraging Key Informant Interviews to Inform Intervention Development: The Greater Lawndale Healthy Work Project.

The Greater Lawndale Healthy Work project is a sequential mixed methods community based participatory research project that examines work as a structural determinant of health and builds community capacity for healthy work in a predominantly Black and Latinx community in Chicago known as Greater Lawndale (GL). We interviewed community leaders in GL as key informants to understand the barriers to healthy work and inform intervention development. We conducted a directed content analysis of transcripts from 20 key informants and coded the social ecology and type of intervention. Every key informant mentioned at least one asset in GL, showing an opportunity to employ a capacity-oriented approach to intervention development. Key informants suggested a variety of interventions to address precarious work across levels of the social ecology, with individual and community level interventions being the most salient. Through this approach, we were able to navigate tensions and challenges in conducting research for community-wide change. Key informant stakeholder interviews can be leveraged to meaningfully inform intervention development and support the development of multi-level, sustainable, and culturally acceptable interventions that advance health equity.

Making Space for Feminist Decolonial Geographies of Peace with the Shuar in the Ecuadorian Amazon: A Case for ‘Cuerpo Territorio’

ABSTRACT This article follows urgent calls from peace and conflict studies and geographies of peace to be decolonised. Our study shows that for the Shuar communities in the Ecuadorian Amazon, the concept of peace is quite different from that of the Ecuadorian state. This study demonstrates how ‘Western’ centric definitions of the term are rooted in colonial logic and power structures. In this article, we explore what it could mean to decolonise theories and spaces for peace. Through encounters with Indigenous Shuar understandings of peace in a community-based participatory research project, we highlight the plurality of possibilities for the term. Using a decolonial lens we conclude with a call to action for scholars in those disciplines to engage with the Feminist Indigenous Latin American and Caribbean methodology and epistemology ‘cuerpo territorio’ (body-territory) to understand territory from the perspective of Abya Yala, that sees women’s bodies as the ‘first territory’. We argue that ‘cuerpo territorio’ is well suited to do decolonial work and help us step outside a Westernized understanding of peace and make strides towards the pluriverse. While typically this Indigenous concept has been used to better understand violence surrounding extraction sites, we propose that engaging with the methodology will prove useful for theoretical findings in spatial understandings of peace and its praxis.

Staff perspectives on the successful families program model: Combining supportive housing with wraparound services for teen families

Providing support to address the systemic barriers that teen families face is a logical step toward improving their health and well-being. One area where teen families face multiple obstacles is accessing safe, secure, affordable housing. This paper describes a unique, innovative model of supportive housing developed in combination with wraparound supports, provided to teen parents in Edmonton, Canada. As part of a larger community-based participatory research and evaluation project, we draw on qualitative data to describe the supportive wraparound housing model that was developed. In particular, we conducted individual interviews and focus groups with a total of 27 staff members from the partner agencies, who provided information about the Successful Families program model. Analysis of interview data resulted in five broad categories that have resonated with our community and academic team as a way to conceptualize and share the work of the program. Categories, which are described in terms of associated subcategories, include: Community, Partnership, Program Principles and Values, Successful Families Program Structures, and Skill and Knowledge Development. Through this work, we aim to promote awareness of considerations for service providers seeking to implement similar services, and expand the limited knowledge base regarding methods for supporting the diverse needs of teen families.

A Mixed Methods Exploration of Students' Experiences of Taking Part in a Tuition Assistance Program in Rural Alberta, Canada

This paper reports on the experiences of rural students taking part in the Zero Fee Tuition program—a postsecondary tuition assistance program providing up to $5,000 in tuition subsidies for students residing in Drayton Valley, Alberta, Canada. Zero Fee Tuition was introduced by the Town of Drayton Valley in 2019 as a rural development initiative focused on attracting and retaining postsecondary education students. Here, we present a qualitatively-oriented mixed methods study of interview, focus group, and survey data collected with 24 Zero Fee Tuition students in 2021-2022 as part of a broader community-based participatory research project. In this paper, we explore two overarching themes: (a) facing opportunities and challenges throughout zero-fee tuition education, and (b) shifting the culture of education and training in Drayton Valley. Our results suggest that students' experiences were heavily shaped by the gendered care work they undertake in addition to, and as part of, their paid work and studies. Further, the Zero Fee Tuition program provided many students the first opportunity to attend a postsecondary education program. In this way, our findings suggest that Zero Fee Tuition is working towards its goal of expanding educational opportunities for residents of Drayton Valley. We discuss our findings within a rural oil-based town shaped by a boom-bust economy. Despite the positive contributions of the Zero Fee Tuition program, our analysis demonstrates the persistence of social structural conditions that impact the challenges faced by participants in this study.

A co-design exemplar: how to align with community goals when developing data collection methods with communities from refugee backgrounds

Co-design in a research context is an approach that involves participants reflecting on their lived experience of a phenomenon to tailor research outcomes to their needs. It is empowering because it provides greater equity in the research process. However, minimal literature is available on ways to encompass co-design into research planning. This article aims to provide an exemplar of co-design research by describing how data collection methods and tools were developed in a participatory action research project through collaboration with community members with a lived refugee experience in Greater Brisbane, Australia. Eight people (aged 18 to 65) were recruited using convenience and purposive sampling, with four workshops held between January and April 2022. Workshops utilised co-design methods, including journey mapping, personas, brainstorming and experiential learning to capture the lived experience of accessing food, to collaboratively co-design data collection methods and tools, and to train community members as community researchers. Co-designing data collection methods ensured that community members with no research experience could contribute towards the design of culturally appropriate data collection tools. Future research in public health should embed co-design into research/intervention planning, execution and outcomes, and align research goals with community goals by drawing on lived experience.

“I Feel Like I am Part of Something Bigger Than Me”: Methodological Reflections From Longitudinal Online Participatory Research

This article details methodological reflections and implications for future work from an innovative, participatory research project that started life during the UK’s first COVID-19 lockdown in early 2020. We reflect on the practice, ethical considerations, and challenges of this (necessarily) online participatory research program, which featured intensive, prolonged collaboration with parents/carers living on a low income within the UK. We discuss the ethical-epistemological foundations of the work, specifically a feminist ethics of care and reciprocity, and present our unique methodological approach, detailing how technology was used to collaborate with a diverse, nation-wide community of parents/carers. We discuss our own and participants’ reflections, including the distinctive complexities and advantages of conducting participatory research online, and also the challenges of upholding an ethics of care in an online, participatory space. We highlight the time intensive nature of this work and argue that, within the academy, more needs to be done both to recognize this and to find ways to create space within it for documenting and learning from innovations in the methodology pursued. We conclude with reflections on the new possibilities that emerge when translating participatory principles to online spaces—learnings with clear relevance for others interested in pursuing these approaches.

An evaluation and refinement of the “Hep B Story” app, tailored to meet the community’s cultural needs

BackgroundHepatitis B is endemic amongst the Australian Aboriginal population in the Northern Territory. A participatory action research project identified the lack of culturally appropriate education tools and led to the development of the “Hep B Story” app in the Aboriginal language Yolŋu Matha. This paper describes a formal evaluation of the app’s first version, which informed improvements and translation into a further ten Aboriginal languages.MethodsThe evaluation employed Participatory Action Research (PAR) principles to work within Indigenous research methodologies and prioritise Indigenous knowledge to improve the app iteratively. Semi-structured interviews and focus groups were conducted across the Northern Territory with 11 different language groups. Local Community Based Researchers and Aboriginal Research team members coordinated sessions. The recorded, translated conversations were transcribed verbatim and thematically analysed using an inductive and deductive approach.ResultsBetween November 2018 and September 2020, 94 individuals from 11 language groups participated in 25 semi-structured interviews and 10 focus groups. All participants identified as Aboriginal. Most participants felt the app would be culturally appropriate for Aboriginal communities in the Northern Territory and improve knowledge surrounding hepatitis B. The information gathered from these interviews allowed for identifying five main themes: support for app, relationships, concept versus language, shame, and perceptions of images, along with errors that required modification.ConclusionsA “real-life” evaluation of the app was comprehensively completed using a PAR approach blended with Indigenous research methods. This evaluation allowed us to develop an updated and enhanced version of the app before creating the additional ten language versions. An iterative approach alongside strong community engagement was pivotal in ensuring the app’s cultural safety and appropriateness. We recommend avoiding the use of knowledge-based evaluations in an Aboriginal setting to ensure relevant and culturally appropriate feedback is obtained.

‘Trust us! We know what we are doing!’ Parent-adolescent digital conflict in Australian families

ABSTRACT Networked technologies and device use have become a significant source of conflict between parents and their children, negatively affecting family cohesion and wellbeing. Drawing on the findings of a participatory action research project which consisted of family workshops designed to discuss, and ultimately reduce, family digital conflict, this article explores the main sources of digital conflict amongst Australian families. Four main causes of digital conflict were reported by parents and their children: the amount of time that young people spend online and the subsequent displacement of other tasks considered by parents as more worthwhile; “inappropriate” content; the perceived effects of digital media use on children’s behaviour, and sibling conflict. Findings also revealed differing perspectives and knowledges about the value of digital technologies between parents and children which contributed to family conflict. The findings point towards a greater need for interventions which facilitate a more democratic approach to digital parenting, premised upon parental listening, negotiation, and mutual understanding.

Aquí Entre Nos (Just Between Us): Engagement of Hotel Housekeepers During Sociopolitical and Environmental Change

Abstract: Background: Aquí Entre Nos (Between Us) is a community-based participatory research project to engage rural, ethno-racially diverse hotel housekeepers in a right to work state during a time of national anti-immigrant policy, wildfires and emergence of a global pandemic. Objectives: We aimed to (1) build trust and social support with the hotel housekeeping community, (2) learn about the occupational health, safety, and workers’ rights challenges, strategies, and solutions held by workers, and (3) develop a workforce-driven research and action agenda to improve labor and health conditions. Methods: Participatory mixed methods rooted in popular education are described to form an advisory board and engage the workforce. Lessons Learned: Trusted relationships built through community organizing around immigration, housing, and minimum wage were critical to engage and drive a worker centered research agenda. Conclusions: Despite challenges, housekeeper advisors defined a research agenda that addressed immediate-and long-term needs of the workforce.

A Multi-User Virtual Reality Social Connecting Space for People Living with Dementia and Their Support Persons: A Participatory Action Research Study

Digital technologies such as virtual reality (VR) are increasingly designed and implemented to support people living with dementia who are at risk of loneliness and/or social isolation. Multi-user VR (MUVR), which involves simultaneous user engagement and a sense of being present together in VR, may promote and maintain social connectedness between people living with dementia and their support persons. This paper focuses on Phase 4 of a larger participatory action research (PAR) project, which aimed to explore the usability, acceptability and feasibility of a MUVR application and its potential to support the social connectedness of people living with dementia and their support persons. The study involved five people living with dementia and their five support persons, who trialed the application in their homes over two PAR cycles. The researcher gathered feedback through individual semi-structured interviews and observational field notes. Reflexive thematic analysis guided qualitative data analysis, and the findings suggested that MUVR is a usable, acceptable, and feasible application for this population. The findings also indicated that MUVR shows promise in promoting or maintaining social connectedness among people living with dementia and their support persons. Nonetheless, further refinement is necessary to enhance the usability, acceptability and feasibility of the MUVR application, and these areas of refinement are presented in this paper, through design recommendations for future work.

EVIDENCE AND LESSONS LEARNED FROM THE EVALUATION OF THE EFFECTIVENESS OF INTERVENTIONS TO IMPROVE THE COORDINATION ANS INTEGRATION OF THE CHILEAN NORTHERN METROPOLITAN SERVICE NETWORK

The purpose of this presentation was to share the experience in Chile of the study “Impact of care integration strategies on the performance of health service network in different health sys­tems in Latin America”(Equity LA II), a participatory action research project carried out from 2013 to 2019 in public care networks in the Metropolitan Region of Chile. The lesson learned in this study showed a conceptual model to understand and analyze the performance of the Integrated Health Services Networks by observing their results in terms of coordination and continuity of care. The design and working methods in Chile evidenced interesting results on the production of knowledge in this area and the possibilities of generating collaborative work processes in the network, with the design and implementation of bottom -up interventions­virtual consultancies and inter-level visits- based on existing resources proved to be effective and sustainable over time. Experiences like this are fundamental in the context of the ongoing process of universalization of primary care, whose challenges requires reflection on ways to effectively integrate primary care into a network that recognizes its role and leadership as axis of the care model.

Use of Participatory sUAS in Resilient Socioecological Systems (SES) Research: A Review and Case Study from the Southern Great Plains, USA

Since the publication of the seminal work People and Pixels: Linking Remote Sensing and the Social Sciences, the call to “socialize the pixel” and “pixelize the social” has gone largely unheeded from a truly participatory research context. Instead, participatory remote sensing has primarily involved ground truthing to verify remote sensing observations and/or participatory mapping methods to complement remotely sensed data products. However, the recent proliferation of relatively low-cost, ready-to-fly small unoccupied aerial systems (sUAS), colloquially known as drones, may be changing this trajectory. sUAS may provide a means for community participation in all aspects of the photogrammetric/remote sensing process, from mission planning and data acquisition to data processing and analysis. We present an overview of the present state of so-called participatory sUAS through a comprehensive literature review of recent English-language journal articles. This is followed by an overview of our own experiences with the use of sUAS in a multi-year participatory research project in an agroecological system encompassing a tri-county/tri-state region in the Southern Great Plains, USA. We conclude with a discussion of opportunities and challenges associated with our experience.

Attune, animate and amplify: Creating youth voice assemblages in pARTicipatory sexuality education research

AbstractThis paper explores the politics and praxis of ‘youth voice assemblages’ in an exploratory and pARTicipatory research project where 125 young people (aged 11–18) from England, Scotland and Wales shared what and how they are learning about relationships, sex and sexuality. Creative methods enabled us to ‘attune’ to this learning and generate ‘darta’ (arts‐based data). We then ‘animated’ these darta as dartaphacts (creative objects) including films, poetry and education cards. Finally, we ‘amplified’ these dartaphacts in a face‐to‐face launch event. We argue that a creative ontology of ‘youth voice’ is imperative to develop more relevant, responsive and ethical sexuality and relationships education.

Critical Social Participatory Action Research for Conscientization: Pedagogies and Findings from Xochimilco

The Small Scale Food Production for Cultural Preservation and Economic Inclusion project is a critical social participatory action research project that utilizes critical pedagogies to facilitate spaces of learning and research where power differentials are both recognized and dismantled. The process of consciousness raising those results is an example of applied conscientization. The key pedagogical strategies explained in this article include co-constructed knowledge, critical praxis, a relational design rooted in dialogue and ongoing project partnership.

Mental Health First Aid for Black Populations: Recommendations From the Neighborhood Healers Project

Community-based participatory action research can facilitate counseling psychologists’ engagement in social justice to benefit Black people’s mental health. One way to improve Black mental health is to equip credible and trustworthy community members with mental health knowledge and skills to support other community members experiencing mental health challenges. This study presents the Neighborhood Healers Project—a community-based participatory action research project that trains Black adults (Neighborhood Healers Fellows) in Mental Health First Aid (MHFA). During the inaugural 12-month fellowship year, we collected longitudinal qualitative data from N = 20 Fellows on the relevance of MHFA to Black people. In this paper, we examined their responses using reflexive thematic analysis. Findings included two themes with affiliated subthemes: (a) Liberatory Paradigm Shift and (b) For Us By Us: Culturally Relevant Curriculum. We conclude with implications for counseling psychologists.

Delivering citizen science online and hybrid: impact of the Covid-19 pandemic on recruitment and engagement

This small-scale study explores the impacts of the Covid-19 pandemic on running and delivering a large-scale, international participatory citizen science project. In doing so, it seeks to identify the challenges posed by the pandemic for the research and practitioner community, as well as suggesting useful strategies, tools and helpful approaches for meeting similar challenges in the future. WeCount was a citizen science project aimed at empowering citizens to take a leading role in the production of data, evidence and knowledge around mobility in their own neighbourhoods. The project was originally designed around in-person engagement and interaction with citizens in five European case studies, but it was disrupted by the Covid-19 pandemic. In this pilot study, we conducted seven email interviews with internal project members. Data were analysed using content analysis, and five main themes emerged from the interviews: Recruitment (overall and of specific groups); Uncertainty; Logistics; Digital skills; and Blended approach. We report on the lessons learnt about online citizen recruitment and engagement to support future citizen science and other participatory research projects, not only during times of crisis, but also in deciding when it is and is not a good time to use online methods of recruitment and engagement.