Participatory Research Approach Research Articles

#TEBWorks: Engaging Youth in a Community-Based Participatory Research and User-Centered Design Approach to Intervention Adaptation

#TEBWorks: Engaging Youth in a Community-Based Participatory Research and User-Centered Design Approach to Intervention Adaptation

Abstract PO5-20-05: The FOR ME (Fostering Opportunities in Research through Messaging and Education) study: Using multiple qualitative methods to develop a culturally sensitive narrative intervention to promote equity in clinical trials

Abstract Background: Black women are more likely to present with advanced stage disease and to die following a breast cancer (BC) diagnosis compared to women from other racial/ethnic groups. In 2020, only 7.2% of enrollees in clinical trials that led to the approval of 3 novel drugs for breast cancer were Black. While there are many contributing factors to this inequity (i.e., tumor biology, social and structural health determinants, racial injustice, and differential access to and utilization of high-quality mammography, diagnostics, and therapies), persistent underrepresentation of Black patients in cancer clinical trials (CTs) slows scientific advancements. Objective: The aim of this study is to develop, optimize, and test a narrative decision aid intervention (web-based video) for Black women diagnosed with BC to promote shared decision making and CT participation. The first aim is to conduct multiple qualitative methods with multi-level stakeholders to identify barriers, facilitators, and intervention priorities that would assist Black breast cancer patients to make informed decisions about participating in clinical trials. The second aim is to create a culturally sensitive, narrative intervention designed to support decision making and motivate Black breast cancer patients to participate in clinical trials. Aim 3 will then pilot a study to determine acceptability of the intervention among patients and assess whether it increases clinical trial participation in a safety net oncology practice. Methods: Guided by community-based participatory research approaches, we used multiple qualitative methods (key informant interviews (KIIs) and story circles) to identify barriers and facilitators that support decision-making and CT participation. The KIIs, completed in-person, via phone, or video conferencing, were recorded and professionally transcribed. The research team used thematic analysis and inductive coding approaches. Next, interviews and focus groups will invite feedback on the educational/motivational content of the intervention and will be used to develop a culturally sensitive script and story boards. A video production company will produce the narrative intervention. Finally, focus groups and interviews with participant cohorts will provide feedback on the completed intervention. Black women diagnosed with BC will view the intervention in an oncology clinic. Using a pretest/posttest design, we will analyze the acceptability of the intervention and its effect on intention to participate in clinical trials. We will then conduct a quasi-experimental study in a safety net oncology practice to determine whether the rate of clinical trial participation among Black breast cancer patients increases following implementation of the intervention as a standard component of new patient education. Progress: Recruitment started in July 2022 and currently 30 of 30 interviews with patients are completed, 20 of 20 interviews with clinical stakeholders (oncologists and clinical trial staff) are completed, and 14 of 20 interviews with advocates and community partners are completed. Data collection and the analysis of the interviews and story circles is ongoing. Citation Format: Neha Hippalgaonkar, Ryan Nguyen, Leslie Carnahan, Vida Henderson, Tigist Mersha, Eliza Cohn, Kauthar Salum, Ana Williams, Lolita Coleman, Beulah Brent, AnneMarie Murphy, Paris Thomas, Paramjeet Khosla, Kent Hoskins. The FOR ME (Fostering Opportunities in Research through Messaging and Education) study: Using multiple qualitative methods to develop a culturally sensitive narrative intervention to promote equity in clinical trials [abstract]. In: Proceedings of the 2023 San Antonio Breast Cancer Symposium; 2023 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2024;84(9 Suppl):Abstract nr PO5-20-05.

Community-based participatory research approach to address health care disparities confronting members of the Black Diaspora with Parkinson’s disease

Community-based participatory research approach to address health care disparities confronting members of the Black Diaspora with Parkinson’s disease

Enhancing children's participation in dental research: A commentary.

The concept of childhood has evolved over the years, inspired by the United Nations Convention on the Rights of the Child in 1989, shifting from developmental models to a conception of childhood that recognizes children as moral agents. This evolution highlights the importance of respecting children's agency and their right to be heard in matters that are related to them. In conventional health research, however, children's voices are often inadequately accessed. In this commentary, we discuss the imperative to recognize children's agency in dental research and a shift from research on children to research with and by children. Moreover, we underscore the importance of actively seeking and listening to children's voices and recognizing their agency in shaping research and healthcare practices in the field of dentistry. Further, we explore the application of participatory research approaches in dental research and provide examples of studies that have involved children in various capacities. We conclude this commentary by emphasizing the potential benefits of participatory research in both qualitative and quantitative dental studies to promote deeper understanding, clearer communication, and stronger advocacy regarding children's interests. Primarily, we call for greater recognition of children's agency in dental research and advocate for more inclusive and child-centred research methodologies.

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.

Adapting a Financial Incentives Intervention for Smoking Cessation with Alaska Native Families: Phase 1 Qualitative Research to Inform the Aniqsaaq (To Breathe) Study.

Alaska Native and American Indian (ANAI) peoples in Alaska currently experience a disproportionate burden of morbidity and mortality from tobacco cigarette use. Financial incentives for smoking cessation are evidence-based, but a family-level incentive structure has not been evaluated. We used a community-based participatory research and qualitative approach to culturally adapt a smoking cessation intervention with ANAI families. We conducted individual, semi-structured telephone interviews with 12 ANAI adults who smoke, 12 adult family members, and 13 Alaska Tribal Health System stakeholders statewide between November 2022-March 2023. Through content analysis, we explored intervention receptivity, incentive preferences, culturally aligned recruitment and intervention messaging, and future implementation needs. Participants were receptive to the intervention. Involving a family member was viewed as novel and aligned with ANAI cultural values of commitment to community and familial interdependence. Major themes included choosing a family member who is supportive and understanding, keeping materials positive and encouraging, and offering cash and non-cash incentives for family members to choose (e.g., fuel, groceries, activities). Participants indicated that messaging should emphasize family collaboration and that cessation resources and support tips should be provided. Stakeholders also reinforced that program materials should encourage the use of other existing evidence-based cessation therapies (e.g., nicotine replacement, counseling). Adaptations, grounded in ANAI cultural strengths were made to the intervention and recruitment materials based on participant feedback. Next steps include a beta-test for feasibility and a randomized controlled trial for efficacy. This is the first study to design and adapt a financial incentives intervention promoting smoking cessation among Alaska Native or American Indian (ANAI) peoples and the first to involve the family system. Feedback from this formative work was used to develop a meaningful family-level incentive structure with ANAI people who smoke and family members and ensure intervention messaging is supportive and culturally aligned. The results provide qualitative knowledge that can inform future family-based interventions with ANAI communities, including our planned randomized controlled trial of the intervention.

Development of a person-centred care approach for persons with chronic multimorbidity in general practice by means of participatory action research.

The management of persons with multimorbidity challenges healthcare systems tailored to individual diseases. A person-centred care approach is advocated, in particular for persons with multimorbidity. The aim of this study was to describe the co-creation and piloting of a proactive, person-centred chronic care approach for persons with multimorbidity in general practice, including facilitators and challenges for successful implementation. A participatory action research (PAR) approach was applied in 13 general practices employing four subsequent co-creation cycles between 2019 and 2021. The target population included adults with ≥3 chronic conditions. Participating actors were general practitioners (GPs), practice nurses (PNs), patients (target group), the affiliated care cooperation, representatives of a health insurer and researchers. Each cycle consisted of a try-out period in practice and a reflective evaluation through focus groups with healthcare providers, interviews with patients and analyses of routine care data. In each cycle, facilitators, challenges and follow-up actions for the next cycle were identified. Work satisfaction among GPs and PNs was measured pre and at the end of the final co-creation cycle. Identified essential steps in the person-centred chronic care approach include (1) appropriate patient selection for (2) an extended person-centred consultation, and (3) personalised goalsetting and follow-up. Key facilitators included improved therapeutic relationships, enhanced work satisfaction for care providers, and patient appreciation of extended time with their GP. Deliberate task division and collaboration between GPs and PNs based on patient, local setting, and care personnel is required. Challenges and facilitators for implementation encompassed a prioritisation tool to support GPs appropriately who to invite first for extended consultations, appropriate remuneration and time to conduct extended consultations, training in delivering person-centred chronic care available for all general practice care providers and an electronic medical record system accommodating comprehensive information registration. A person-centred chronic care approach targeting patients with multimorbidity in general practice was developed and piloted in co-creation with stakeholders. More consultation time facilitated better understanding of persons' situations, their functioning, priorities and dilemma's, and positively impacted work satisfaction of care providers. Challenges need to be tackled before widespread implementation. Future evaluation on the quadruple aims is recommended.

Qualitative study of factors affecting engagement with a hospital-based violence intervention programme in Indianapolis, Indiana

BackgroundThere are few qualitative studies of firearm injury survivors and hospital-based violence intervention programme (HVIP) participants. The original study aimed to identify facilitators and barriers to survivors’ utilisation of mental...

Expanding our understanding of digital mental health interventions for Indigenous youth: An updated systematic review.

Past research has examined available literature on electronic mental health interventions for Indigenous youth with mental health concerns. However, as there have recently been increases in both the number of studies examining electronic mental health interventions and the need for such interventions (i.e. during periods of pandemic isolation), the present systematic review aims to provide an updated summary of the available peer-reviewed and grey literature on electronic mental health interventions applicable to Indigenous youth. The purpose of this review is to better understand the processes used for electronic mental health intervention development. Among the 48 studies discussed, smoking cessation and suicide were the most commonly targeted mental health concerns in interventions. Text message and smartphone application (app) interventions were the most frequently used delivery methods. Qualitative, quantitative, and/or mixed outcomes were presented in several studies, while other studies outlined intervention development processes or study protocols, indicating high activity in future electronic mental health intervention research. Among the findings, common facilitators included the use of community-based participatory research approaches, representation of culture, and various methods of motivating participant engagement. Meanwhile, common barriers included the lack of necessary resources and limits on the amount of support that online interventions can provide. Considerations regarding the standards and criteria for the development of future electronic mental health interventions for Indigenous youth are offered and future research directions are discussed.

The RESPCCT Study: Community-led Development of a Person-Centered Instrument to Measure Health Equity in Perinatal Services

The RESPCCT Study: Community-led Development of a Person-Centered Instrument to Measure Health Equity in Perinatal Services

565 Empowering Community Organizations with the Team Science Community Toolkit

OBJECTIVES/GOALS: To introduce the new Team Science Community Toolkit, co-created by community and academic partners, and showcase its potential to empower Community Organizations (COs) in achieving equity in community-engaged research (CER). METHODS/STUDY POPULATION: In response to the challenges faced by COs in CER collaborations, qualitative interviews were conducted with CO staff from historically marginalized communities. These interviews informed the development of the Team Science Community Toolkit, a collaborative effort involving a Community Advisory Board (CAB) and Team Science experts from Northwestern University. The toolkit, designed using a community-based participatory research approach, incorporates the Science of Team Science and User-Centered Design principles. Integrated into the NIH-sponsored COALESCE website, it includes templates, checklists, and interactive tools, along with a real-world simulation, to support COs in all stages of the research process. RESULTS/ANTICIPATED RESULTS: Focus groups and usability testing involving external community experts validated the toolkit’s content and usability. Participants expressed enthusiasm and a sense of empowerment, indicating that the toolkit allows them to actively shape research processes and infuse their specific voices and needs into their partnerships. The toolkit is designed to support breaking down barriers like jargon and cultural adaptability to improve accessibility and open conversation. The impact of this Team Science focused toolkit is under evaluation. This presentation will showcase the toolkit, detail its collaborative development, and explore potential applications, ultimately offering a path to more equitable and valuable community-based research. DISCUSSION/SIGNIFICANCE: By providing COs with the resources and knowledge to participate as equal partners in research collaborations, it enhances self-advocacy, transparency, and equity. The toolkit has the potential to utilize Team Science to foster productive communication in community-academic research partnerships.

Patient and healthcare professional perspectives on the Practical Guide to Implementing PROMs in Gender-Affirming Care (PG-PROM-GAC): analysis of open-ended responses from patients and healthcare professionals

ImportanceSeveral international calls have been made for evidence-based patient-reported outcome measure (PROM) implementation for gender-affirming care. The Practical Guide to Implementing PROMs in Gender-Affirming Care (PG-PROM-GAC) is a resource which...

Social research in primary education management: understanding community needs and priorities

Social research plays a pivotal role in informing primary education management by delving into community needs and priorities. This review elucidates the significance of social research in comprehending the multifaceted dynamics inherent in primary education management. Understanding community needs and priorities is fundamental in shaping effective educational strategies that cater to the diverse requirements of the primary education landscape. Social research methodologies provide invaluable insights into the intricate interplay of factors influencing educational outcomes, including socio-economic backgrounds, cultural nuances, and local contextual factors. By employing qualitative and quantitative research methods, scholars and educators gain a comprehensive understanding of the needs and aspirations of the communities they serve. Moreover, social research facilitates the identification of gaps and disparities within primary education systems, enabling policymakers and school administrators to develop targeted interventions aimed at fostering inclusive and equitable educational environments. By engaging with stakeholders through participatory research approaches, such as community consultations and focus groups, researchers can co-create solutions that resonate with the unique realities of each community. Furthermore, social research serves as a catalyst for fostering collaboration between educational institutions, government agencies, and community-based organizations. By fostering partnerships grounded in empirical evidence and shared goals, primary education management can be strengthened through collective efforts aimed at addressing systemic challenges and advancing educational equity. Social research in primary education management is indispensable for understanding community needs and priorities. By leveraging research-driven insights, stakeholders can work collaboratively to cultivate inclusive, responsive, and effective primary education systems that empower learners and communities alike.

Social Engineering for Reducing Hypertension Case in Indonesia: a Qualitative Study in a Rural Area

Consuming foods with a large amount of salt is an unhealthy lifestyle that raises blood pressure. People currently love salty foods in Indonesia. One of district in Indonesia called Jeneponto referred to hypertension as Nai’ Cera. The Jeneponto community consumes more significant salty food higher than the provincial average for South Sulawesi. An intervention study was carried out to change the habit of consuming high salt, smoking and drinking coffee. This study is qualitative with participatory action research approach. The in-depth interviews and focused group discussion were addressed to twenty-two informants which involved in an intervention program. Social engineering became the key-point to socialize the importance of the program. Well-trained local people recruited as an agent of change. They followed the social engineering intervention and focused on what people need to reduce hypertension. The program raised awareness on hypertension towards their lives by educating as well as discussing on their risky habits on over consumptions fatty, sugar, salt substances. The successful behavior changes in this program comprised several keys to consider such as: the intervention locations, the closest relationship towards the agent, the agent as frontliner, sustainability of the program, and commitment of all components of intervention.

Sosialisasi Pencegahan Stunting melalui Bimbingan dan Konseling Kesehatan dan Gizi Anak Usia Dini di Desa Cipinang Kec. Cibatu Kab. Purwakarta

This research was conducted based on the results of observations and concerns experienced by the community. Stunting is one of the focus problems in Cipinang village which influences children's development as efforts to optimize stunting prevention take the form of child health and nutrition counseling through community service activities. The research method uses a Participatory Action Research (PAR) approach design. Starting with observing the problem, interpreting and analyzing it, then action is taken to alleviate the problems in society. Based on these Actions gradually understand the important role they play in maintaining children's Health. Apart from that, the community also has the potential to create broad social change because the community plays an active role in being collectively involved in jointly maintaining the health of children, preventing and alleviating stunting in Cipinang Village.

Improvement of palliative care for people with intellectual disabilities: A multi-site evaluation.

To improve the quality of palliative care, six evidence-based tools were implemented in 10 care services specialised in care for people with intellectual disabilities. Contextual differences were taken into account by using a participatory action research approach. The RE-AIM framework (Reach, Effectiveness, Adoption, Implementation and Maintenance) structured the evaluation. Data sources were online questionnaires completed by 299 professionals at baseline (response 45.2%) and 250 professionals after 2.5 years (35.1%), 11 semi-structured group interviews with 43 professionals, field notes and implementation plans. A total of 767 professionals and 43 teams were reached. The effectiveness of the intervention was demonstrated in an improved knowledge of palliative care policy and increased competences among professionals. 79% of the professionals adopted tools in the toolbox. The participatory action research method was perceived as valuable in driving change. Improving palliative care needs a context-specific, flexible approach, with involvement of all stakeholders.

Developing a Social Media-Based Communication System Between Rural Healthcare Providers and Expert Medical Personnel in Bokeo Province, Laos PDR

This qualitative study investigates the development of a social media-based communication system designed to enhance interprofessional communication in Maternal and Child Health (MCH) services between rural healthcare providers and expert medical personnel (EMP) in Bokeo Province, Laos. The study addresses the issue of high maternal mortality rates attributed to poor infrastructure and the lack of timely medical interventions. It proposes using WhatsApp, a popular social media platform in Laos, to bridge this communication gap. Employing a participatory action research approach, the study involved 269 healthcare providers and four EMPs in focus group discussions. These discussions were instrumental in identifying unique communication challenges and potential solutions. Thematic analysis of the data revealed significant barriers to seeking expert advice and underscored the potential of digital health solutions like WhatsApp in overcoming these obstacles. To successfully implement such a system, considerations must include privacy, professionalism, consistent internet connectivity, adequate training, and clear usage guidelines. This study informs the development of a context-specific, comprehensive strategy that integrates technological, infrastructural, financial, educational, and cultural elements to enhance MCH outcomes in remote areas of Laos.

The Potential of Participatory Social Economics: A Framework and Feminist Perspective

Recurrent economic, ecological and democratic crises provoke opportunities to critically examine previously unquestioned assumptions about economies, an effort which can include those people on which the theory and practice are usually designed and tested. This article claims that there is a role for participatory research (PR) approaches to play for social economists seeking to understand and support local problem-solving, especially in social economy activities and socioecological change processes. The objective of the article is twofold: first, a simple framework for understanding the different manifestations of PR will be presented based on the degree to which a project has (a) scientific or transformative goals, and (b) hierarchical or democratic decision-making. Second, this text will discuss the kind of PR that is ethically and epistemologically compatible with social economic scholarship. This theoretical argument is grounded in feminist, Black and Indigenous principles of (1) highlighting subjective and socially-embedded perspectives, (2) critically interrogating power dynamics within research contexts and processes, and (3) ethically engaging participants in collaborative research. Such an approach aims to dismantle the hierarchical binary between scientific and non-scientific knowledges, with social economists actively contributing to collective problem-solving efforts rather than acting as detached observers and planners.

But We Do Not Know Anything, We Were Born in This Predicament: Experiences of Learners Facing Xenophobia in South Africa

In this article, we discuss the experiences of learners who face xenophobia in South Africa. While extensive research has been conducted on xenophobia, few studies have specifically examined its impact on school-going children, whose presence at school is not by design in South Africa. We explore their lived experiences within the curriculum, thus exposing various trajectories that hinder effective teaching and learning. To theorise our findings, we tap into Whitehouse and Lanman’s notion of social cohesion. For data collection, we used a participatory action research approach. Through a series of interviews and group discussions, we engaged with a diverse group of 13 participants, which consisted of 10 migrant learners and 3 teachers. The study found that xenophobia is a significant social pathology in South Africa which found its way into the classroom walls, thereby affecting the performance of migrant learners. It affects the victim’s identity and has profound consequences for the perpetrators. Ultimately, the effects of xenophobia contribute to a cycle of school violence. We assert the imperative of addressing the distressing impact of xenophobia on children within classrooms. Based on our findings, we argue that initial teacher education programmes are key in fostering a non-violent society through promoting cohesion and cultural responsiveness.

"I'd Rather Be Broke Than Harmed": A Qualitative Analysis of the Experiences of People Engaged in Commercial Sex Work During the COVID-19 Pandemic.

People involved in commercial sex work during the COVID-19 pandemic, particularly those compelled to sell sex, faced multiple challenges to their safety and well-being. We explored, in real time, the impact of the COVID-19 pandemic on people involved in commercial sex work and the broader commercial sex industry. Using a participatory action research approach, we interviewed 159 English- and Spanish-speaking adults who had engaged in commercial sex work under the direction of a third party in Sacramento County, California, within the past 5 years (approximately 2017-2022). As part of a larger study, our interview protocol included 1 question about the COVID-19 pandemic: "Has COVID-19 changed anything about your experience with sex work?" We transcribed and analyzed interviews using QSR-NVivo, a qualitative coding software. Participants described the effects of increased isolation, decreased demand, difficulty accessing social services, fear of contracting COVID-19, difficulty in following public health guidance on social distancing and wearing face masks, and how the pandemic resulted in some people entering or exiting commercial sex work. Most participants were familiar with recommended public health safety measures, but lack of agency and financial need limited their ability to comply with all recommendations. A lack of access to social services added stress to those most in need of emergency housing or substance use treatment and left them vulnerable to continued abuse. Stress and financial insecurity generally increased among people involved in commercial sex work during the pandemic, and no efforts were made to understand and mitigate the hardships that this population faced. Future research should address how to maintain social service availability during times of public health emergencies and other crises.