Participatory Health Research Research Articles

2.Y.1. Communication in participatory health research with refugees and migrants

Abstract Innovative approaches are needed to transform public health research and address health inequities. Participatory Health Research (PHR) is one such approach, which aims to maximize the participation of those whose life or work is the subject of the research in all stages of the research process. PHR has advantages for both research outcomes, including increased relevance, meaningfulness and impact of research, as well as for those involved, in terms of ownership and empowerment to address their health priorities. PHR with migrants has potential to reduce health inequities through the active involvement of migrants in research about their health. In a framework for refugee and migrant health in the WHO European Region, MacFarlane et al. (2022) recommend the research field of migration and health to adopt PHR as the norm, for ethical reasons and to support effective research-policy-practice translation. PHR with migrants is increasingly used but is still rare and adhoc in the field of migration health research. There are also potential practical and ethical challenges that warrant critical reflection. One persistent challenge is communication, where differences in culture, language and knowledge areas need to be considered in multiple ways, for example, in the development of participatory partnerships, in the conduct of data collection that takes place as a result of such participatory partnerships and in dissemination processes. The aim of the workshop is to share different approaches on PHR with migrants and propose solutions to common challenges in communication. The workshop will be structured in a first part where presenters will draw upon their experience in PHR with refugees and migrants covering a broad range of topics relating to communication, and a second part of open discussion with presenters and the audience. The workshop will address two key questions: what challenges have we experienced, and lessons learnt. Anne MacFarlane presents emerging evidence about music and singing as culturally attuned arts based methods that can create innovative opportunities for communication for partnership building, fieldwork and dissemination. Ana Gama presents on using idea-generation workshops with vignettes representing migrants with diverse health-literacy profiles and its potential to address communication challenges. Key messages • Participatory health research with migrants warrants critical reflection around communication, ethics and partnership-building. • In participatory health research, using innovative and creative methods can create opportunities to overcome communication barriers and build meaningful collaborations. Speakers/Panelists Anne MacFarlane University of Limerick, Limerick, Ireland Ana Gama IHMT, Universidade Nova de Lisboa, Lisbon, Portugal

Understanding COVID-19 and its Impact on Social connection at the Outdoor Recreational Spaces Among CQUniversity students

Preventive measures have been widely used to stop the COVID-19 outbreak, which may have a devastating impact on the social connection among university students. Particularly, Outdoor recreation has been limited due to the COVID-19 restrictions. This study seeks to understand Central Queensland University students’ knowledge about COVID-19 preventive measures and identify the consequence of this practice on the social connection at the outdoor recreational spaces by using a mixed-method design (online survey and interview). Central Queensland University students (CQU) enrolled in Participatory Health Research completed an online survey (N=22) and participated in an online interview (N=15). The results showed that students understood clearly about COVID-19 preventive measures (N=22, 100%). Students had a high number of social connections at the recreational areas, both in-person (Mean=7, Std=7) and virtually (Mean =2, Std=7) before COVID-19. Conversely, during the COVID-19 outbreak, social contacts at the recreational areas had dropped for in-person (Mean=4, Std=5.5) while connection via online platforms slightly increased (Mean =3, Std=5). Their level of social connectedness during COVID-19 moderately connected (N=8, 36%). Students’ experienced impact on the three socioecological levels of intrapersonal (e.g. stress, loneliness, and behavior change), interpersonal (e.g. contacting via social media) and environmental (e.g. parks needed for emotional support).

Improving access and quality of primary healthcare through women and adolescents' user committees: A mixed-methods case study in Kinshasa, Democratic Republic of the Congo.

Patient engagement is seen as a fundamental strategy for achieving quality patient-centred care, especially in community-based primary healthcare. Despite growing interest in patient engagement in Sub-Saharan Africa, few patient engagement initiatives have been identified, and those often are limited to lower levels of engagement, in participation in health research or in health system improvement. With the aim of giving a voice to under-represented community groups in healthcare governance, the Access to Health services in Kinshasa (ASSK) project supported the implementation of primary health services user committees in the Democratic Republic of the Congo, designed to enable the representation of two user groups with specific unmet sexual and reproductive health (SRH) needs: women and adolescents. Using a mixed-method case study design combining quantitative secondary data (from the national health management information system-DHIS2) and qualitative data from two research World Café (WC1: Women user committees (WUC) n=55; WC2: Adolescents user committee (AUC) n=63), this paper looks at the implementation facilitators and barriers, and at the results of this initiative. Women and adolescent members of the user committees highlighted that their participation resulted in increased knowledge of SRH and their related rights, as well as in their 'soft skills' such as communication and leadership. In addition, participants reported greater transparency and accountability on the part of the community primary health centres (e.g. by displaying fees for procedures to counter over-billing). Ultimately, WUC and AUC were associated with improved health practices in the community such as increased use of SRH services (increase of 613% for Makala and 160% for Maluku II), including adolescent family planning (increase of 320% for Makala and 12% for Maluku II) and assisted childbirth for women15-49years old (increase of 283% for Makala and 23% for Maluku II)). Patient user committees for specific marginalised or under-represented groups appear to be an effective way of improving the quality of primary health care services. Further research is needed to better understand how to maximise its potential.

Exploring healthcare workers’ perceptions of child health research at Kamuzu Central Hospital, Malawi: an interpretative phenomenological analysis

BackgroundChildren’s health is a global public health priority and a determinant of development and sustainability. Its effective delivery and further improvements require constant and dedicated research on children, especially by child healthcare workers (HCWs). Studies have shown a high involvement of child HCWs from developed countries in child health research, with an under-representation from the global south in authorship and leadership in international collaborations. To our knowledge, there is very little literature on challenges faced by child HCWs in Malawi in conducting child health research. We sought to explore the lived experiences of child HCWs at Kamuzu Central Hospital (KCH) in Malawi by examining their perceptions of child health research and assessing the availability of child health research opportunities.MethodsFrom July 2023 to August 2023, we conducted five key informant interviews with purposively sampled policymakers and 20 in-depth interviews with child HCWs at KCH. The interviews were conducted in English, audio-recorded, and transcribed verbatim. We utilised interpretative phenomenological analysis by reviewing initial transcripts for familiarity, generating codes manually, and refining them into broader themes through comparisons and iterative processes.ResultsThe analysis revealed three main themes on perceptions of child HCWs at KCH in child health research. These are (i) perceived motivation and challenges for engaging in child health research, (ii) perceptions of resource availability and research opportunities at KCH, and (iii) perceptions of gaps in research training and participation among child HCWs.ConclusionsOur study has uncovered critical factors influencing the low participation of child HCWs in child health research at KCH. Lack of collaboration, limited financial opportunities, and non-research-based training were the key barriers to participation in child health research among child HCWs at KCH. We advocate for the inclusion of child HCWs at all stages of collaborative health research, transparency on funding opportunities for child health research, and inclusion of research in the training of HCWs. These initiatives can strengthen the participation of child HCWs in child health research and ultimately enhance child health outcomes in Malawi.

Conducting mental health research with rural and regional older Australians: Reflections and recommendations.

This commentary aims to assist emerging leaders of mental health research with older rural Australians through (i) affirmation that others share the barriers, pitfalls and challenges being faced; (ii) reinforcing the rationale making this a pertinent area for research; and (iii) opening a dialogue for best practice to engage older rural Australians in mental health research. Supporting the mental health of older adults is a pertinent global challenge, none more so than in rural Australia where restricted access to services and supports are compounded by limited help-seeking behaviours and capacity to engage with support. Paradoxically, such limitations also extend to impact researchers' ability to engage rural older Australians in mental health research, particularly when combined with the stoicism and stigma that often envelopes mental health, and the contemporary challenges posed by the emergence of technology. Such challenges are however not often discussed, more-often sidelined in favour of reporting positive research outcomes, or seeing emerging researchers eschew such focus entirely. Through this paper, the authors utilised critical self-appraisal and iterative reflection to identify four recommendations for undertaking contemporary mental health research with rural older Australians, namely to: plan realistically through a collaborative, authentic and respectful approach; identify community champions and build/maintain trust; diversify thought, approaches and methodology; and cast the research net far, wide and often. By adopting recommendations, researchers can maximise accessibility to and possible participation in mental health research, providing foundations for older rural Australians' contributions to inform the development of policies and strategies to promote their health and well-being.

Tracing participants for longitudinal environmental health research using social networking sites: a pilot study

Aim: Longitudinal cohort study designs are considered the gold standard for investigating associations between environmental exposures and human health yet they are characterized by limitations including participant attrition, and the resource implications associated with cohort recruitment and follow-up. Attrition compromises the integrity of research by threatening both the internal and external validity of empirical results, weakening the accuracy of statistical inferences and the generalizability of findings. This pilot study aimed to trace participants from a historical cohort study, the Hamilton Child Cohort Study (HCC) (n = 3,202), (1976–1986, 2003–2008) which was originally designed to examine the relative contribution of indoor and outdoor exposure to air pollution on respiratory health. Methods: Original participants were traced through social networking sites (SNS) by leveraging personal identifying data (name, age, sex, educational affiliation, and geographical locations) from the HCC entered into SNS search engines. Results: Of the original cohort (n = 3,166), 21% (n = 665) were identified as having social media presence (SMP) on a single social media platform, with 15% (n = 479) found on Facebook, 6% (n = 185) on LinkedIn, < 1% (n = 9) on Instagram, and n = 1 participant on Twitter. However, 68% (n = 2,168) of the cohort were associated with multiple SNS with the same features (matching names, ages, and locations), making conclusive identification challenging. The remaining 11% (n = 334) of the cohort had no SMP (NSMP). Statistical differences in sample characteristics of each cohort were analyzed using the Pearson chi-square test. Significant differences between the SMP and NSMP cohorts were found in relation to sex (p < 0.001), and childhood neighborhood of residence (p < 0.05). Conclusions: This study underscores social media’s potential for tracing participants in longitudinal studies while advising a multi-faceted approach to overcome inherent limitations and biases. A full-scale study is necessary to determine whether utilizing SNS to trace participants for longitudinal research is an effective tool for re-engaging research participants lost to attrition.

Combating Fraudulent Participation in Urban American Indian and Alaska Native Virtual Health Research: Protocol for Increasing Data Integrity in Online Research (PRIOR).

While the advantages of using the internet and social media for research recruitment are well documented, the evolving online environment also enhances motivations for misrepresentation to receive incentives or to "troll" research studies. Such fraudulent assaults can compromise data integrity, with substantial losses in project time; money; and especially for vulnerable populations, research trust. With the rapid advent of new technology and ever-evolving social media platforms, it has become easier for misrepresentation to occur within online data collection. This perpetuation can occur by bots or individuals with malintent, but careful planning can help aid in filtering out fraudulent data. Using an example with urban American Indian and Alaska Native young women, this paper aims to describe PRIOR (Protocol for Increasing Data Integrity in Online Research), which is a 2-step integration protocol for combating fraudulent participation in online survey research. From February 2019 to August 2020, we recruited participants for formative research preparatory to an online randomized control trial of a preconceptual health program. First, we described our initial protocol for preventing fraudulent participation, which proved to be unsuccessful. Then, we described modifications we made in May 2020 to improve the protocol performance and the creation of PRIOR. Changes included transferring data collection platforms, collecting embedded geospatial variables, enabling timing features within the screening survey, creating URL links for each method or platform of data collection, and manually confirming potentially eligible participants' identifying information. Before the implementation of PRIOR, the project experienced substantial fraudulent attempts at study enrollment, with less than 1% (n=6) of 1300 screened participants being identified as truly eligible. With the modified protocol, of the 461 individuals who completed a screening survey, 381 did not meet the eligibility criteria assessed on the survey. Of the 80 that did, 25 (31%) were identified as ineligible via PRIOR. A total of 55 (69%) were identified as eligible and verified in the protocol and were enrolled in the formative study. Fraudulent surveys compromise study integrity, validity of the data, and trust among participant populations. They also deplete scarce research resources including respondent compensation and personnel time. Our approach of PRIOR to prevent online misrepresentation in data was successful. This paper reviews key elements regarding fraudulent data participation in online research and demonstrates why enhanced protocols to prevent fraudulent data collection are crucial for building trust with vulnerable populations. ClinicalTrials.gov NCT04376346; https://www.clinicaltrials.gov/study/NCT04376346. DERR1-10.2196/52281.

Migration health ethics in Southeast Asia: a scoping review

Background Asia hosts the second-largest international migrant population in the world. In Southeast Asia (SEA), key types of migration are labour migration, forced migration, and environmental migration. This scoping review seeks to identify key themes and gaps in current research on the ethics of healthcare for mobile and marginalised populations in SEA, and the ethics of research involving these populations. Methods We performed a scoping review using three broad concepts: population (stateless population, migrants, refugees, asylum seekers, internally displaced people), issues (healthcare and ethics), and context (11 countries in SEA). Three databases (PubMed, CINAHL, and Web of Science) were searched from 2000 until May 2023 over a period of four months (February 2023 to May 2023). Other relevant publications were identified through citation searches, and six bioethics journals were hand searched. All searches were conducted in English, and relevant publications were screened against the inclusion and exclusion criteria. Data were subsequently imported into NVivo 14, and thematic analysis was conducted. Results We identified 18 papers with substantial bioethical analysis. Ethical concepts that guide the analysis were ‘capability, agency, dignity’, ‘vulnerability’, ‘precarity, complicity, and structural violence’ (n=7). Ethical issues were discussed from the perspective of research ethics (n=9), clinical ethics (n=1) and public health ethics (n=1). All publications are from researchers based in Singapore, Thailand, and Malaysia. Research gaps identified include the need for more research involving migrant children, research from migrant-sending countries, studies on quality of migrant healthcare, participatory health research, and research with internal migrants. Conclusions More empirical research is necessary to better understand the ethical issues that exist in the domains of research, clinical care, and public health. Critical examination of the interplay between migration, health and ethics with consideration of the diverse factors and contexts involved is crucial for the advancement of migration health ethics in SEA.

Methodological and practical guidance for designing and conducting online qualitative surveys in public health.

Online qualitative surveys-those surveys that prioritise qualitative questions and interpretivist values-have rich potential for researchers, particularly in new or emerging areas of public health. However, there is limited discussion about the practical development and methodological implications of such surveys, particularly for public health researchers. This poses challenges for researchers, funders, ethics committees, and peer reviewers in assessing the rigour and robustness of such research, and in deciding the appropriateness of the method for answering different research questions. Drawing and extending on the work of other researchers, as well as our own experiences of conducting online qualitative surveys with young people and adults, we describe the processes associated with developing and implementing online qualitative surveys and writing up online qualitative survey data. We provide practical examples and lessons learned about question development, the importance of rigorous piloting strategies, use of novel techniques to prompt detailed responses from participants, and decisions that are made about data preparation and interpretation. We consider reviewer comments, and some ethical considerations of this type of qualitative research for both participants and researchers. We provide a range of practical strategies to improve trustworthiness in decision-making and data interpretation-including the importance of using theory. Rigorous online qualitative surveys that are grounded in qualitative interpretivist values offer a range of unique benefits for public health researchers, knowledge users, and research participants.

Benefit-sharing with human participants in health research in South Africa: A call for clarity.

This study critically examines the concept of benefit-sharing in the context of health research involving human participants in South Africa, identifying a significant gap in the precision and application of terminology. It introduces a new terminological framework designed to provide clarity and facilitate standardisation in both national and international discourse on benefit-sharing. The analysis extends to the complex legal landscape in South Africa, highlighting the nuances of mandated, permitted, and prohibited practices of benefit-sharing across various statutes. This reveals substantial implications for ethics committees, researchers, and participants, emphasising the need for a legal and ethical recalibration. Furthermore, the manuscript critiques South Africa's main ethics instruments for their inadequate guidance on benefit-sharing and proposes recommendations for enhancing the Department of Health's ethics guidelines. By advocating for a coherent, legally informed approach to ethical decision-making, the study underscores the need for integrating the proposed framework and legal insights into ethics guidelines. This comprehensive strategy aims not only to advance ethical practices within South Africa but also to contribute significantly to the global discourse on benefit-sharing in health research.

A qualitative exploration of challenges recruiting older adults for Being Your Best, a co-designed holistic intervention to manage and reduce frailty: lessons learnt amidst the COVID-19 pandemic in Melbourne, Australia

ObjectivesResearchers face numerous challenges when recruiting participants for health and social care research. This study reports on the challenges faced recruiting older adults for Being Your Best, a co-designed holistic...

From struggle to strength in African and Middle Eastern newcomers' integration stories to Canada: A participatory health equity research study.

Newcomers (immigrants, refugees, and international students) face many personal, gender, cultural, environmental and health system barriers when integrating into a new society. These struggles can affect their health and social care, reducing access to mental health care. This study explores the lived experiences of African and Middle Eastern newcomers to Ontario, Canada. An understanding of newcomer integration challenges, successes and social justice issues is needed to improve health equity and social services. In this qualitative study, we used a participatory research approach to collect stories reflecting participants' integration perspectives and experiences. Beginning with our immigrant community network, we used snowball sampling to recruit newcomers, ages 18 to 30, originating from Africa or the Middle East. We used qualitative narrative analysis to interpret stories, identifying context themes, integrating related barriers and facilitators, and resolutions and learnings. We shared our findings and sought final feedback from our participants. A total of 18 newcomers, 78% female and approximately half post-secondary students, participated in the study. Participants described an unknown and intimidating migration context, with periods of loneliness and isolation aggravated by cold winter conditions and unfamiliar language and culture. Amidst the struggles, the support of friends and family, along with engaging in schoolwork, exploring new learning opportunities, and participating in community services, all facilitated integration and forged new resilience. Community building, friendships, and local services emerged as key elements for future immigrant service research. Utilizing a participatory health research approach allowed us to respond to the call for social justice-oriented research that helps to generate scientific knowledge for promoting culturally adaptive health care and access for marginalized populations.

IJCM_394A: Participation of Undergraduate Medical Students in Health Research and Factors Influencing It in a Medical College of Puducherry- A Cross-Sectional Study

Background: Developing, maintaining, and sustaining undergraduate medical students’ research involvement will enable future healthcare practitioners to practice more appropriate evidence-based clinical medicine. Objective: To assess the participation in health research and factors promoting it among undergraduate medical students in Puducherry. Methodology: A descriptive cross-sectional study was conducted among undergraduate medical students in Puducherry over a period of three months (August-October 2023). Systematic random sampling was applied to recruit 360 study participants based on Chellaiyan et al. A pre-tested, semi-structured questionnaire was used to collect the data, including socio-demographic characteristics, academic performance, participants’ attitudes, perceived motivational and barrier factors towards health research, and current involvement in health research. Data were entered in MS Excel 2019 and analyzed using SPSS v16.0. Results: A total of 360 participants were interviewed, of whom 51.6% were female and the majority (86.7%) were hostelers. Among the 360 study participants, only around one-tenth of the participants”41 (11.39%)” have participated in the health research. The factors of gender, competency-based medical education approach, and grade of the participants in the recent university exam were associated with participation in health research. The majority (90.4%) of the participants were highly motivated to participate in health research. The main barriers identified are lack of funds, collaboration, mentorship, time to conduct, and systematic training in the research methodology. Conclusion: Participation in health research has doubled since the introduction of competency-based medical education. Still, participation could be improved by addressing the identified barriers. Studentship programs, young researcher awards, systematic training programs integrated into the curriculum, etc. could also compute the participation in health research among undergraduate medical students.

A service-oriented approach to clinical trial recruitment for dementia and brain health: Methods and case examples of MyAlliance for Brain Health.

Recruitment of sufficient and diverse participants into clinical research for Alzheimer's disease and related dementias remains a formidable challenge. The primary goal of this manuscript is to provide an overview of an approach to diversifying research recruitment and to provide case examples of several methods for achieving greater diversity in clinical research enrollment. The University of Kansas Alzheimer's Disease Research Center (KU ADRC) developed MyAlliance for Brain Health (MyAlliance), a service-oriented recruitment model. MyAlliance comprises a Primary Care Provider Network, a Patient and Family Network, and a Community Organization Network, each delivering tailored value to relevant parties while facilitating research referrals. We review three methods for encouraging increased diversity in clinical research participation. Initial outcomes reveal an increase in underrepresented participants from 17% to 27% in a research registry. Enrollments into studies supported by the research registry experienced a 51% increase in proportion of participants from underrepresented communities. MyAlliance shifts power, resources, and knowledge to community advocates, promoting brain health awareness and research participation, and demands substantial financial investment and administrative commitment. MyAlliance offers valuable lessons for building sustainable, community-centered research recruitment infrastructure, emphasizing the importance of localized engagement and cultural understanding. MyAlliance led to a significant increase in the representation of underrepresented racial and ethnic groups and individuals from rural areas.The service-oriented approach facilitated long-term community engagement and trust-building, extending partnerships between an academic medical center and community organizations.While effective, MyAlliance required substantial financial investment, with costs including infrastructure development, staff support, partner organization compensation, and promotional activities, underscoring the resource-intensive nature of inclusive research recruitment efforts.

Abstract P383: Factors That Improve Young Men Participation in Rural Research: Findings From the Mississippi Core of the Risks Underlying Rural Areas Longitudinal (RURAL) Study

Introduction: Challenges in engaging and recruiting rural communities into health research stem from known barriers such as decreased healthcare awareness, less access to health research, community context and low education. Within rural communities, the demographic that is the most challenging to recruit is men ages 25-44 years. However, there is little data on what factors improve participation among young men in rural areas. The purpose of our study was to explore the reasons for the reluctance of men ages 25-44 to participate in research and identify factors can encourage their willingness to participate in the NHLBI’s Risk Underlying Rural Areas Longitudinal (RURAL) Study. Methods: In June 2022 and June 2023 respectively, the Mississippi (MS) Core of the RURAL Study conducted health fairs in Oktibbeha and Panola counties. Investigators used the health fairs as an opportunity to recruit participants for focus group interviews to explore questions related to men’s health awareness, health behaviors and likelihood to participate in the RURAL Study. Those recruited included community advisory board members and health fair attendees. One focus group in each county consisted of men only. Investigators conducted 4 virtual focus group interviews in each of the two counties. Thematic analysis was used to identify key themes and sub-themes. Results: Thirty-two (32) interviewees, including 25 women. participated in focus groups across the two counties (17 Oktibbeha,15 Panola). Four key themes and 8 subthemes were identified. Lack of health awareness, fear of harm, inability to see the benefits of participation, and lack of incentives were among the reasons men ages 25-44 do not participate in research in these rural areas. Investigators learned that providing health education with reassurance of no harm, promoting the benefits of participation to themselves their families and communities, providing meaningful incentives, and motivating them through influences from family, friends and third parties can encourage participation by men in this age group. Particularly, it was suggested health awareness investigators should host events explicitly for men (including small group question and answer sessions) and be visible in the community by going where the young men go such as barbershops, sporting events, gyms, and men’s organizational meetings and by staying in touch. Conclusion: In this study consisting of 8 focus groups conducted across two rural communities, key themes identified to improve young male participation in health research include: 1) addressing perceived concerns through awareness and reassurance of no harm,2) informing potential candidates for the study the benefits of participation, 3) maintaining a presence in the community through community engagement and 4) identifying and social motivators such as family, friends and third-party influencers.

Recovery-oriented practice in a hospital mental health service.

As part of mental health reform in Australia, new policies were introduced to support recovery-oriented practice; however, little has changed in hospital settings focused on managing risk and remediating acute symptoms. Previous studies have indicated that patients' experiences of personal recovery, during a hospital admission, may not mirror that of people living in the community, with patients being more likely to experience disconnection, hopelessness and disempowerment. Using a Participatory Health Research approach, eight mental health professionals, a patient advocate and an external researcher formed a research partnership to answer the question: How can staff enhance recovery-oriented practice in a hospital-based mental health service? The COREQ checklist was used for reporting the methods, analysis and findings. The methods comprised patient focus groups (n = 16 participants), interviews with managers (n = 7) and an online survey for staff (n = 17). Researchers analysed the feedback from the consultations using inductive thematic analysis, identifying two themes: relational recovery and recovery interventions. The findings indicate that relational recovery is key to recovery during a hospital admission and interventions that increase connectedness or reduce the impact of symptoms enhance personal recovery.

A square peg in a round hole: reflecting on using a participatory health research approach during my PhD

ABSTRACT When reflecting on my years as a doctoral student, I recall several questions that often came to mind throughout my journey: what is participatory health research? Is such an approach to research truly feasible in the pursuit of a doctoral degree? Is it worth it, or have I inadvertently made things more challenging for myself? My response to these questions has evolved dramatically alongside my growth and development throughout my PhD. I was presented with an opportunity to explore an approach to participatory health research firsthand; a process which included many jumps, twists, turns, and slides, and at times, left me feeling like a square peg in a round hole. Throughout this process, navigating the breadth of challenges and opportunities presented along the way, I also learned the importance of one’s narrative – in particular, the growth and development made possible when researchers and participatory partners share our stories and reflect together. This paper is part of my story, through my account of ‘our story’. It embraces a narrative-style approach to critical reflection of the participatory process throughout my doctoral studies, emphasising the key challenges posed when working within the boundaries of traditional academic structures. I provide a reflexive account of how these challenges were navigated, which created a range of opportunities at both a theoretical and practical level. I conclude with a response to these initial questions and a hopeful call for change.

Defining acceptable data collection and reuse standards for queer artificial intelligence research in mental health: protocol for the online PARQAIR-MH Delphi study

IntroductionFor artificial intelligence (AI) to help improve mental healthcare, the design of data-driven technologies needs to be fair, safe, and inclusive. Participatory design can play a critical role in empowering...

Layered vulnerability and researchers’ responsibilities: learning from research involving Kenyan adolescents living with perinatal HIV infection

BackgroundCarefully planned research is critical to developing policies and interventions that counter physical, psychological and social challenges faced by young people living with HIV/AIDS, without increasing burdens. Such studies, however, must navigate a ‘vulnerability paradox’, since including potentially vulnerable groups also risks unintentionally worsening their situation. Through embedded social science research, linked to a cohort study involving Adolescents Living with HIV/AIDS (ALH) in Kenya, we develop an account of researchers’ responsibilities towards young people, incorporating concepts of vulnerability, resilience, and agency as ‘interacting layers’.MethodsUsing a qualitative, iterative approach across three linked data collection phases including interviews, group discussions, observations and a participatory workshop, we explored stakeholders’ perspectives on vulnerability and resilience of young people living with HIV/AIDS, in relation to home and community, school, health care and health research participation. A total of 62 policy, provider, research, and community-based stakeholders were involved, including 27 ALH participating in a longitudinal cohort study. Data analysis drew on a Framework Analysis approach; ethical analysis adapts Luna’s layered account of vulnerability.ResultsALH experienced forms of vulnerability and resilience in their daily lives in which socioeconomic context, institutional policies, organisational systems and interpersonal relations were key, interrelated influences. Anticipated and experienced forms of stigma and discrimination in schools, health clinics and communities were linked to actions undermining ART adherence, worsening physical and mental health, and poor educational outcomes, indicating cascading forms of vulnerability, resulting in worsened vulnerabilities. Positive inputs within and across sectors could build resilience, improve outcomes, and support positive research experiences.ConclusionsThe most serious forms of vulnerability faced by ALH in the cohort study were related to structural, inter-sectoral influences, unrelated to study participation and underscored by constraints to their agency. Vulnerabilities, including cascading forms, were potentially responsive to policy-based and interpersonal actions. Stakeholder engagement supported cohort design and implementation, building privacy, stakeholder understanding, interpersonal relations and ancillary care policies. Structural forms of vulnerability underscore researchers’ responsibilities to work within multi-sectoral partnerships to plan and implement studies involving ALH, share findings in a timely way and contribute to policies addressing known causes of vulnerabilities.

Community-Based Action Research Intervention to Promote Occupational Health Nursing of Portuguese Quarry Workers.

The northern region of Portugal has the largest number of companies manufacturing granite and stone products, which has become the region's trademark. In the municipalities of Marco de Canaveses and Penafiel, the economic activity of this area is important. However, the lack of attractiveness of this activity, combined with the high prevalence of silicosis and tuberculosis in this population, has led to a growing shortage of labor. In order for this project to be the result of collaborative, integral work centered on the people who are the target of health promotion, we used the Participatory Health Research (PHR) approach, based on the PRECEDE-PROCEED model, to implement a mixed-methods study, including participant observation, interviews and document analysis. These data were used to co-create a study design. In 2021, a total of 102 interviews were carried out and self-completion surveys were distributed: the Fantastic Lifestyle Questionnaire (FLQ) and the EQ-5D-3L. Within the scope of occupational health nursing and in the field of action of public health nurses, with the interviews and self-completed surveys carried out, we identified potential focuses for occupational health nursing intervention to promote the health of stone industry workers: adherence to protective measures, energy balance deficit, tobacco and alcohol consumption and access to health services. Data analysis made it possible to assess the prevalence of risk behaviors by order and to involve managers and workers in the co-creation of a health promotion program. The accurate identification of the focuses for nursing intervention not only improves the effectiveness of occupational health services, allowing for targeted interventions adapted to workers' needs, but also contributes considerably to health promotion in the workplace, resulting in safer working environments, a reduction in occupational diseases and, consequently, a healthier and more productive workforce. This protocol of this study was not registered.