Participatory Research Research Articles

Using the 12-item short-form health survey (SF-12) to evaluate self-rated health in an environmental justice community

The Greater Fifth Ward (GFW) is a Northeast Houston, Texas, neighborhood with a legacy of industrial contamination and a confirmed cancer cluster. To understand self-rated health in the GFW, community-based participatory research (CBPR), was used to promote the inclusion of all partners. CBPR involves the community during each stage of the research process from design to research dissemination. A complete census was conducted, and 114 surveys were obtained in the environmental justice (EJ) community from July to November 2021. EJ communities shoulder an unfair burden of environmental exposures, pollution, and poor built environments. Mental and physical health were measured using the validated 12-item Short Form Health Survey (SF-12v2). We posited that the Black or African American (Black/AA) community would have lower mental composite scores (MCS) and physical composite scores (PCS) compared to the nation and their White counterparts. The MCS and PCS were calculated and compared against the national mean. Overall, participants had higher MCS and lower PCS than the national mean. Black/AA males and females had lower MCS compared to their White counterparts. White females had the lowest PCS among all respondents, significantly lower than the national average. MCS was lower among those who lived in the neighborhood longer. Burdens from pollution may impact residents’ health and perceived health. Targeted interventions or programs that improve mental or physical health would benefit this community and other inequitably burdened neighborhoods.

Enhancing benefits for peer researchers: towards a flexible and needs-based approach to participatory research

ABSTRACT The involvement of peer researchers has recently gained popularity in social research, and the incentives for using participatory methodologies are well recognised. However, as we argue, the sole presence of peer researchers does not equate to their immediate empowerment, and more attention should be given to the roles they play in the research and the ways in which they can tangibly benefit from such collaborations. We explore the seemingly mundane aspects of work such as recruitment, training, conducting research, dissemination and the afterlife of the project, to suggest that meaningful engagement of peer researchers demands a tailored approach that is receptive to their particular needs and motivations, and is supportive of their individual growth. Our critical reflection stems from a two-year-long collaboration with peer researchers in Poland undertaken as part of a Horizon 2020 project, which explored the lives of young migrants and refugees in Europe.

Service-policy gaps in the settlement journey of Arabic-speaking immigrant newcomer and refugee older adults in Edmonton, Canada.

Immigrant newcomers and refugees (INRs) are two migrant categories that experience consistent systemic barriers to settlement and integration in Canada as older adults. This paper explores the challenges experienced by Arabic-speaking INR older adults in Edmonton, Canada, during settlement and discusses policy and service implications. A qualitative description study using community-based participatory research principles was implemented to evaluate and support digital literacy in Arabic-speaking INR older adults. We included men and women aged 55 and older who identified as immigrants or refugees and spoke Arabic. Experiences of settlement challenges were consistently identified during data collection and engagement of INR older adult participants. A thematic sub-analysis of interviews with (10 individuals and one couple) of participants' narratives was completed in 2022 and was used to identify themes related to settlement barriers for this population. Two main themes were identified: (1) Limited English skills and digital literacy gaps create service barriers for INR older adults, and (2) Gaps in services and policies as basic needs remain unmet. We describe key challenges experienced by INR older adults, such as language barriers, precarious finances, poor access to health care services and lack of transportation and employment opportunities, which hinder successful integration into the new society. This study showcases the ongoing challenges with early settlement and integration that continue despite Canada's well-developed immigration settlement landscape. INR older adults often remain invisible in policy, and understanding their experiences is a first step to addressing their needs for resources that support healthy aging in the post-migration context.

Foster care breakdown in adolescence: A retrospective view of young individuals on their experiences

Summary Placement with a foster family is one of the care arrangements available for children who cannot live at home. Many of those in foster care are teenagers. The complexity of the development during adolescence poses major challenges and may ultimately lead to what is known in the literature as “foster breakdown.” Most of the research in this area focuses on the point of view of social workers or foster parents. The current study examines this experience through a retrospective view of those who were teenagers at the time of foster care breakdown. To this end, semi-structured interviews were conducted with 14 Israeli young individuals (16–30 years old) who had experienced foster breakdown at various stages of adolescence. Findings The findings paint a complex and multidimensional picture of breakdown. While most of the interviewees described it as a sudden, unexpected event, closer examination revealed a dynamic process of collapse. This process comprised various factors, including those associated with the welfare system, the foster family, and characteristics related to the developmental stage of adolescence of the research participants. The combination of these factors led to the premature termination of the foster arrangement. Applications This study opens a window to the complex experience of foster breakdown in adolescence, an issue that has received very little research attention thus far. Understanding the dynamics of foster breakdown from the perspective of young individuals can improve professional foster care practices and policy and can benefit social workers in their work with foster families.

“Why Won’t You Let Me Hit On You?”: Sexual Harassment in Fieldwork as Data

The aim of the article is to introduce and demonstrate a research strategy which incorporates experiences of sexual harassment in the field into analysis. Violence in the field, while discussed more frequently after #MeToo, is still often referred to in separate descriptions, usually articles with the function of breaking the taboo, cautioning and giving advice. In the article a different approach is proposed, namely, regarding difficult encounters in the field as data, providing important information about the field of research. Three situations of sexual harassment by male research participants are analyzed. First, as their strategies to gain control and power in interview situations. It is possible because gender hierarchies prevail in the research set up. Second, as indicators in a broader context: the organizational culture of an institution, of the interviewee’s life situation and strategies, and of the power dynamics of a couple.

Perception and Trust in Autonomous Vehicles Post Cyber Security Incidents

The integration of Autonomous Vehicles (AVs) into modern systems of transportation brings with it a new and transformative era. Central to the successful realisation of this transformation is the public’s trust in these vehicles and their safety, particularly in the aftermath of cyber security breaches. The following research therefore explores the various factors underpinning this trust in the context of cyber security incidents. A dual-methodological approach was used in the study. Quantitative data was gathered from structured questionnaires distributed to and completed by a cohort of 151 participants and qualitative data, from comprehensive semi-structured interviews with AV technology and cyber security experts. Rigorous Structural Equation Modelling of the quantitative data then allowed for the identification of the key factors influencing public trust from the standpoint of the research participants including the perceived safety of AV technology, the severity of cyber security incidents, the historic cyber security track record of companies and the frequency of successful cyber security breaches. The role of government regulations, though also influential, emerged as less so. The qualitative data, processed via thematic analysis, resonated with the findings from the quantitative data. This highlighted the importance of perceived safety, incident severity, regulatory frameworks and corporate legacy in shaping public trust. Whilst cyber incidents no doubt erode trust in AVs, a combination of technological perception, regulatory scaffolding and corporate history critically impacts this. These insights are instrumental for stakeholders, from policymakers to AV manufacturers, in charting the course of AV assimilation successfully in future.

Polokalama Fekumi ki he Kanisā 'o e Halanga-me'atokoní-Ko e vakai 'a e Tongá: Tongan New Zealanders' views on how to ensure the National Bowel Cancer Screening Programme works well for the Tongan community.

The National Bowel Screening Programme (NBSP) fails to deliver screening equitably to Pacific New Zealanders. This research explored Tongan New Zealanders' experiences of participating in the NBSP and their views on ensuring the programme works well for the Tongan community. In 2021, we conducted two talanoa focus groups with Tongan New Zealanders who had participated in the NBSP (n=26), recruited through a Pacific provider in Auckland. Participants were aged 60 or more and were Tongan born. Interviews with four Pacific experts working in the NBSP were also undertaken. Their views on the NBSP were explored and analysed using thematic analysis. While the research participants valued the opportunity to participate in the NBSP, they had many valuable insights about strengthening it, as did the Pacific experts. Key was a by Tongan, for Tongan service run by Tongan providers, one based on Tongan models of health and health promotion, Tongan values and ways of working, and using the Tongan language, which empowers Tongans to take control of their health. This research demonstrates critical elements of an effective, culturally appropriate and empowering NBSP for Tongans led by Tongan providers. If these findings are enacted, more effective delivery of bowel screening to Tongans will likely be enabled, reducing inequity in participation between Tongans and other New Zealanders. What is required is courage and political will to shift power and resources to ensure equitable outcomes in the NBSP, not only for Tongans but for all Pacific peoples.

Vulnerable Research Participant Policies at U.S. Academic Institutions.

Background: Historically, some of the worst abuses of human research participants have involved populations which are vulnerable to coercion, harm, or exploitation, such as prisoners, children, and people with compromised decision-making abilities. Although there has been considerable philosophical and ethical debate about how to protect vulnerable populations, there have been only a handful of empirical studies on vulnerable population policies. Methods: We conducted a cross-sectional study on vulnerable population policies from the 105 top funded U.S. academic research institutions. We used deductive and inductive methods to develop our framework for coding the policies. We tested for associations between policies and research and development expenditure rank, public vs. private status, geographic region, and Association for Accreditation of Human Research Protection Programs accreditation (AAHRRP). Results: U.S. academic institutions have a variety of policies for research with vulnerable populations. Every institution in our sample had at least 2 policies for research with vulnerable populations (including a general policy) and most had 8 or more. As expected, the most highly prevalent policies pertained to populations covered in subparts B, C, and D of the Common Rule (pregnant women, fetuses, neonates, prisoners, and children) but other groups were well-represented, including people with disabilities; people with impaired decision-making capacity; students/trainees; and people with limited English proficiency including illiteracy. AAHRRP accreditation was positively associated with eight different types of policies. Conclusion: U.S. academic institutions have a variety of policies for research with vulnerable populations. Additional research is needed to better understand the types of safeguards that institutions have adopted to protect vulnerable populations and the factors that influence policy development.

Using a metacognitive awareness approach to improve perception of the fundamental biological principle – homeostasis

ABSTRACT This study investigates the process of students’ metacognitive learning about homeostasis, a fundamental biological principle. The research aimed to determine how the metacognitive awareness learning approach (MCLA) affects student perceptions of homeostasis. The research participants were 146 Israeli 10th-grade students (ages 15–16) who were divided into two groups: The MCLA group (MCLAG) (n = 92) received guidance according to the MCLA. The control group (CG) (n = 54) did not receive such guidance. Results disclose the contribution of the MCLA to a better understanding of homeostasis, a fundamental biological principle. Quantitative findings indicate higher achievements by students in the intervention group. Qualitative findings showed differential conceptual understandings regarding homeostasis characteristics, as follows: the MCLA distinctively promoted the following characteristics of homeostasis: efficiency, dynamics of a homeostatic process, and environments. Other characteristics, such as coordination and lack of randomness, control regulation, feedback mechanisms, and multi-systems, were partially promoted by the MCLA. Regarding the energy characteristics, however, the students faced significant challenges in understanding the energy element in the context of homeostasis, indicating a potential for future research. We can deduce that the MCLA can potentially promote the students’ understanding of homeostasis. These results may guide teachers to convey fundamental principles in biology more effectively.

Exploring epistemological prospect of proximity tourism in refugeedom through creative lens of poetic inquiry

ABSTRACT In this article, the author explores the epistemological prospect of proximity tourism in refugeedom through the creative lens of poetic inquiry (PI). With spoken word poetry at its core, the author portrays an unsung refugee’s journey during resettlement and articulates the importance of PI and creative analytic practice in doing so. Given that ‘creativity’ can lead to concerns about research reliability and antipathy toward research participants, the author emphasizes the importance of academically informed approaches in mitigating such risks in this article. This exploratory article illustrates the author’s evolution as a researcher actively involved in refugeedom and tourism, underscoring the relevance of PI as a creative, analytical conduit. He emphasizes incorporating PI into research while carefully balancing creative sensibilities and academic rigour.

Emotional Labor in Dementia Research.

The concept of emotional labor refers to the regulation and management of emotions within the workplace. This labor may involve a dissonance between the emotions that are internally felt and the emotions that can be externally expressed. The concept of emotional labor can be applied to the emotional management that occurs during research often when directly interacting with research participants. These emotions can have a positive role in building rapport and enabling the researcher to understand the participant's world. But equally, it can lead to emotional strain and potentially have a negative impact on researcher well-being. In this paper, we apply the concept of emotional labor to dementia research. While there has been attention paid to ethical issues in dementia research, this has often focused on the impact on the participant and not the researcher. Within this paper, we first draw on the literature to provide an overview of the role of emotional labor in the research context. Within the literature, we identify nine research scenarios where emotional labor might occur within dementia research. We then present three case studies illuminating our experiences of emotional labor within dementia research. These case studies provide illustrative examples of some of the research scenarios identified in the literature. To synthesize the learning from the literature and our case studies, we propose peer-critiqued recommendations for managing emotional labor in dementia research. We conclude by considering the implications for other health researchers.

Towards pluriversal community informatics

In this article we reflect on pluriversal connections for Community Informatics (CI), drawing from our collective experiences working with Indigenous Peoples in Borneo and Canada. Building on Michael Gurstein’s foundational work and situating it in relation to contemporary debates around digital equity and inclusion, we present summaries of collaborative, iterative, locally-grounded participatory action research projects that illustrate the enduring methodological, ethical and conceptual questions raised in CI. Through our interactions and shared experiences, these examples also demonstrate Gurstein’s (2012) focus on connecting across geographic and cultural boundaries in ways that respect the self-determined nature of place-based communities.

GREEN ECONOMY DENGAN PENGELOLAAN LIMBAH BERBASIS ILMU PENGETAHUAN DAN TEKNOLOGI PADA BANK SAMPAH 3G

Garbage remains a significant issue in Greenary Permai Bojong Gede Housing, leading to an unhealthy environment, particularly when waste collection is inconsistent. In response, the 3G waste bank initiated several waste reduction activities. However, progress has been slow due to limited waste management knowledge, incomplete equipment, low community awareness, and manual record-keeping. To address these challenges, training was provided on managing organic and plastic waste, and repurposing used cooking oil into candles and soap. Financial application training was also given to improve the recording process. The goal was to enable the community and partners to adopt a small-scale waste management system and integrate it into daily habits. Using Participatory Action Research (PAR), community members, including waste bank administrators, were directly involved in hands-on training to ensure participants understood the objectives. Since the socialization of this initiative in April 2024, significant progress has been made. Questionnaire results showed 95% of participants understood the activity's purpose. Monitoring and evaluation revealed that residents and partners have successfully adopted composting, ecobrick-making, and proper recycling of used cooking oil into candles or soap, demonstrating sustainable practices and optimal use of the financial applications.

Moving psychedelic-assisted therapies from promising research into routine clinical practice: Lessons from the field of implementation science.

Psychedelics (e.g., 3,4-Methylenedioxymethamphetamine [MDMA], lysergic acid diethylamide [LSD], psilocybin) are molecules that have the potential to produce rapid therapeutic effects when paired with psychotherapy. Randomized clinical trials of psychedelic-assisted psychotherapy (PAT) have shown promising results for post-traumatic stress disorder (PTSD), depression, and substance use disorders. The U.S. Food and Drug Administration has acknowledged the promise of PAT, signaling potential approval of psilocybin-assisted therapy for depression by 2026. Given this timeline, implementation scientists must engage with PAT researchers, policymakers, and practitioners to think critically about bringing these promising new treatments into routine practice settings while maintaining quality and safety. This commentary aims to initiate a dialogue between implementation scientists and PAT researchers and practitioners on addressing these questions with a lens toward equity. Specifically, we discuss how the field of implementation science can support PAT stakeholders to accelerate the translational process from research into practice, focusing specifically on safety-net settings (i.e., Federally Qualified Health Centers and Veterans Affairs health systems) that serve historically marginalized populations. We use the Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE-AIM) Framework to illustrate five critical areas where implementation science can help move PAT from research into real-world practice. For each RE-AIM dimension, we highlight ways the field of implementation science can contribute tools (e.g., implementation strategies), methodologies (e.g., pragmatic hybrid implementation-effectiveness trials), and approaches (community-based participatory research) for establishing the safety, effectiveness, and accessibility of PAT for historically underserved communities.

A hand-washing community-based educational intervention to reduce abscess incidence among people who inject drugs: a cluster randomised controlled clinical trial protocol (the HAWA study protocol)

BackgroundBesides the high prevalence of HIV and HCV infections, people who inject drugs (PWID) have a cumulative risk of acquiring skin and soft tissue infections (SSTI) from, among other things, social precariousness, homelessness/unstable housing, and unhygienic injecting practices. We propose to evaluate whether a two-component educational hand hygiene intervention which combines training in hand-washing with the supply of a single-use alcohol-based hand rub, called MONO-RUB, is effective in reducing injection-related abscesses in the PWID population. Specifically, we shall implement a nationwide, two-arm, multi-centre, cluster randomised controlled trial to evaluate the effectiveness and cost-effectiveness of this intervention in PWID.MethodsHAWA is a community-based participatory research study to be conducted in 22 harm reduction centres (HR) in France (not yet recruiting); the latter will be randomised into two clusters: centres providing standard HR services and the intervention (i.e., intervention group) and those providing standard HR services only (i.e., control group). After randomization, each cluster will include 220 PWID, with an inclusion period of 12 months and an individual follow-up period of 6 months. For each participant, we will collect data at M0, M3 and M6 from photos of injection sites on the participant’s body, a face-to-face injection-related SSTI questionnaire, and a CATI questionnaire. The primary outcome is the reduction in abscess prevalence between M0 and M6, which will be compared between the control and intervention arms, and measured from observed (photographs) and self-declared (SSTI questionnaire) data. We will also assess the cost-effectiveness of the intervention.DiscussionThe HAWA trial will be the first cluster randomized controlled trial to improve hand hygiene among PWID with a view to reducing SSTI. If effective and cost-effective, the intervention combined with the distribution of MONO-RUBs (or a similar cleaning product) may prove to be an important HR tool, helping to reduce the enormous burden of infection-related deaths and diseases in PWID.Trial RegistrationNCT06131788, received on 2 January 2024.

Lessons learned from a community-based participatory research project developing a smoking cessation app in socioeconomically disadvantaged areas

Lessons learned from a community-based participatory research project developing a smoking cessation app in socioeconomically disadvantaged areas

The Politics of Expertise in Genomics Policy and Law

Genomics and biotechnology have generated controversy for decades, about the moral limits of tinkering with and commodifying life, the boundary between nature and technology, the respectful treatment of research participants, and the proper evaluation of emerging technologies. Socio-legal and science and technology studies scholars have demonstrated how the resolution of these questions has serious implications for both science and the law, including the appropriate conduct and direction of scientific research and the construction of legal categories and rights. This article demonstrates that these conflicts also have profound impacts on the politics of science and technology, and particularly approaches to relevant knowledge and expertise. Humanities, social scientific, legal, and lay knowledge asserted themselves through the establishment of human genetics research and battles over the ownership of biological materials and data. However, US political culture—which favors technical and market knowledge—constrained their authority. Cross-national comparison highlights this finding, as other jurisdictions have been more inclusive in their approaches to science and technology governance.

Participant Motivators and Expectations in the MEL-SELF Randomized Clinical Trial of Patient-Led Surveillance for Recurrent Melanoma: Content Analysis of Survey Responses.

Limited data exist on the motivations and expectations of participants when enrolling in dermatology clinical trials, including melanoma early detection trials. Understanding participant motivators for research engagement has been identified as a prioritized area for trial methodology research. The study aimed to determine motivators of participation and expectations from trial involvement among patients enrolled in the MEL-SELF randomized clinical trial of patient-led surveillance for new or recurrent melanoma. The MEL-SELF trial is recruiting patients previously treated for localized melanoma, who own a smartphone, have a partner to assist with skin self-examination (SSE), and attend routinely scheduled follow-up at specialist and primary care skin clinics in Australia. We evaluated responses from the first 100 randomized participants to 2 open-ended questions about their motivations and expectations for participating in the trial, administered through the internet-based baseline questionnaire. A total of 3 coders independently coded the free-text responses and resolved discrepancies through consensus. Qualitative content analysis by an iterative process was used to group responses into themes. Responses from potential participants who were not randomized and the 404 participants randomized subsequently into the trial, were also checked for new themes. Coding and analysis were conducted in Microsoft Excel. Out of the 100 survey participants, 98 (98%) answered at least 1 of the 2 questions. Overall, responses across the motivation and expectation items indicated 3 broad themes: community benefit, perceived personal benefit, and trusting relationship with their health care provider. The most common motivators for participation were related to community benefit. These included progressing medical research, benefitting future melanoma patients who may have similar experiences, and broader altruistic sentiments such as "helping others" or "giving back." The most common expectations from the trial related to personal benefit. These included perceived improved outcomes such as earlier diagnosis and treatment, access to additional care, and increased self-empowerment to take actions themselves that benefit their health. Patients expressed a desire to gain health-related knowledge and skills and were interested in the potential advantages of teledermatology. There were no new themes in responses from those who were not randomized or were randomized subsequent to the first 100. We report a tailorable, patient-focused approach to identify drivers of research engagement in clinical research. Clinical trials offer an opportunity to collate a substantial evidence base on determinants of research participation and to identify context-specific factors. Results from the MEL-SELF trial emphasized notable altruism, self-empowerment, and perceived advantages of teledermatology as specific motivators. These findings informed consent processes, recruitment, retention, response to trial tasks, and intervention adherence for the MEL-SELF host trial. Australian New Zealand Clinical Trials Registry (ANZCTR): ACTRN12621000176864. https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=379527.

When Ethics Becomes Unethical: An Autoethnographic Account of Gaining Ethics Approval to Conduct Ethnography in a Healthcare Setting

AbstractMany ethnographic researchers have raised concerns over the potential impacts that the institutionalization of ethics review boards can have on social science research, especially within healthcare settings. However, few articles to-date have documented how these norms and practices play out in actuality. This paper, therefore, uses autoethnography to provide an account of three ethical challenges that arose during my process of seeking ethics approval through institutional review boards to conduct ethnographic fieldwork in a healthcare setting. In doing so, I demonstrate how bureaucratic accountability took precedence over my research expertise, making the research that I initially set out to do inaccessible, questionable, and ‘unethical’, despite being carried out in accordance with the current standards governing research involving human participants and their data. I conclude with ways to move beyond this existing ethics structure towards a more collaborative approach between ethics boards, researchers, and research participants grounded within the realities of the field.

Reflections on Researcher’s Positionality and the Evolving Role of Research Participants

Abstract In this piece, we reflect on the unforeseen conditions and interactions that shaped our research experiences, bringing into focus the fluidity of one’s positionality and the evolving role of research participants across the research continuum. By drawing on ethnographic fieldnotes, Nataliia Stepaniuk (Ukrainian-Canadian) reflects on returning to her home country of Ukraine in 2015 to study civilian mobilization amidst the Donbas war, highlighting multiple roles of her interlocutors in molding her research. Next, Golrokh Niazi (Iranian-Canadian) discusses conducting fieldwork in 2016–2017 in post-revolutionary Tunisia while being confronted with the complexities of her shifting “insider/outsider” status, as well as the central role of her local network in guiding the trajectory of her project towards a new line of inquiry. Jointly, these reflections offer insights into the fundamental role of research participants and the importance of our interpersonal relationships in successfully navigating the field and generating ethnographic findings.