Empower Participants Research Articles

Collaborative Interpretation of Researcher-Generated Photo-Elicitation Findings: Insights From Women With Lived Experience of Homelessness.

Interviews with individuals experiencing homelessness can be challenging for various reasons, including mental and physical health issues, substance use, and negative experiences with authority figures. Researchers have used photos to facilitate communication and empower participants during data collection. We analyzed data from a previous study to explore the use of researcher-generated photos during interviews about health with 13 women experiencing homelessness. Conversation analysis revealed clear patterns regarding the use of the photos during the interviews. The photos were referred to 118 times over the total interview length, 6hours and 23 minutes, with the interviewer making 62% of the referrals and the women accounting for 38%. Fifty-nine percent of the referrals occurred within the first 5minutes of the interviews. The women used the photos to trigger associations and emotions, to describe photo content, or in a minor role during the interview. Interpretations from an advisory board of six women with lived experiences of homelessness suggested that the photos did not engage participants as intended, highlighting the importance of considering participants' perspectives when designing photo-elicitation methods. The feedback also provided valuable insights into interview locations and incentives in research that may have influenced the women's willingness to use the photos. This study emphasizes the importance of understanding the complexity of choosing researcher-generated photos in interviews with underserved, hard-to-reach populations.

Implementing Youth Worker Networks to Achieve Social Impact in the Eradication of LGBTQIA-Phobia

IntroductionThe problem of LGBQIA-phobia has been extendedly reported as a problem that threatens the quality of life and well-being, particularly for trans and intersex individuals. Scientific evidence points at the high presence of this form of violence and discrimination during adolescence and youth, negatively affecting the prospects of the victims. At the same time, there is a lack of evidence on the role and potential impact of Youth Worker Networks involved in analysing gender-based violence and finding strategies to improve the situation of LGBTQIA+ youth.MethodsThis study has focussed on the reality of a network of youth workers through a mixed method approach belonging to a transnational project funded by the Rights, Equality and Citizenship Program (REC) of the European Commission. The implementation of 160 questionnaires and 5 semi-structured interviews in 2022 with the training participants provides evidence on the social impact that networking and evidence-based training may have in tackling LGBTQIA-phobia in youth environments.ResultsThe findings of the current study show how the implementation of Youth Worker Networks can provide relevant results to achieve more respectful youth spaces toward diversity. The presence of traditional dominant masculinities together with the lack of quality training seem to be an important barrier for youth workers to fight against gender and sexual discrimination. In contrast, the professionals’ motivation and the group potential and support of the network appear to be a significant strength in overcoming forms of violence and discrimination on the grounds of sexual orientation, gender identity, or gender expression in youth contexts.ConclusionsThe results indicate that the role of youth workers, the quality of the training and environments are crucial in the work to identifying, preventing, and acting against any form of violence on the grounds of sexual orientation, gender identity or gender expression.Policy ImplicationsOur findings point to the significant power of networks to overcome violence and discrimination against the LGBTQIA+ community. Our recommendation for achieving social impact is to provide evidence-based data and empower participants to become active upstanders against any form of violence or discrimination.

Including People Who Use Augmentative and Alternative Communication in Qualitative Research: Can You Hear Us?

People who use augmentative and alternative communication (AAC) are frequently excluded from research, yet their voices can significantly enhance the applicability, acceptability, and translation of qualitative research findings. Accessible and adapted research methods welcome and empower participants who use AAC, and enable meaningful involvement. In this article, we describe the collaborative development of a framework to conceptualise inclusive research and aspects of an accompanying inclusive research toolkit. The framework identifies balancing power as a critical factor, primarily achieved by ensuring that research methods and materials are accessible to people who use AAC. We propose that this is achieved through three interacting elements: collaboration with AAC users, skills and knowledge to achieve accessibility, and ensuring adequate time is available to achieve involvement. We identify five areas where applying these elements has impact for AAC users: recruiting AAC users, working with communication supporters, adapting research methods, securing ethics approval, and consent. In presenting the framework, we demonstrate how qualitative researchers can foster a research environment that values and actively includes AAC users, ultimately advancing the field towards more comprehensive and inclusive research practices. While our work is situated in the cerebral palsy and AAC communities, our proposed framework and toolkit can be applied by researchers seeking perspectives from individuals with communication disabilities more broadly. We have created a corresponding plain language video of this article as an additional means of optimising accessibility of the content. See supplemental material .

Being a Peer Community Health Worker: Restoring Ourselves and the Community

Abstract: Women on the Road to Health Transitions combines two evidence-based strategies, WORTH and Transitions Clinic Network into an intervention for women involved in the criminal legal system with substance use and HIV risks. Led by peer community health workers (CHWs), Women on the Road to Health Transitions also links participants to primary care. We describe the impact of the program from the perspective of the CHWs. As integral research team members, the CHWs learned to successfully recruit, retain, and empower participants, facilitate the intervention, administer surveys, and help them link with and navigate the healthcare system. Simultaneously, the CHWs developed professional skills and self-efficacy.

Abstract A025: Empowering Latinas to obtain genetic services: Comparing precision cancer prevention strategies

Abstract Purpose: Precision cancer prevention strategies are critical for addressing the complex interplay of adverse social determinants of health (SDOH) and elevated biological risks for breast cancer (BC) among Latinas and other marginalized communities. FQHC-community-academic partnerships may have particularly high potential for operationalizing these strategies and reducing population-level disparities through enhancing genetic counseling and testing (GCT) and subsequent cascade testing/personalized care. Objective: To present emerging results from a RCT comparing the effectiveness of two precision cancer prevention strategies on increasing GCT among Latinas and networks with elevated biological and adverse SDOH risks. Methods: Latinas Lideres en Salud (LaLiSa) is an ongoing RCT is situated in a 14-site federally qualified health center (FQHC) in Chicago. This unique FQHC has a comprehensive GCT program, as part of its integration with an academic medical center. Eligibility criteria for patients include: 1) identification as Latina, Hispanic, Chicana, etc.; 2) age of 18+ years old; 3) personal or family history of BC or related cancers (e.g., ovarian); 4) no previous GCT uptake; and, 5) no prior volunteerism. Patients are randomly assigned to participate in one of two 3-week phone-based interventions from a community agency. Both interventions offer personalized BC education, SDOH screening and navigation, and free/low-cost GCT services. “Educate” offers education on risk reduction (diet, exercise). “Empower” offers skills training on sharing precision cancer prevention information with family and other network members, who can also be eligible for SDOH navigation and GCT services. Data collection includes two surveys (baseline, post-intervention) for relevant covariates and use of study/navigation records for GCT uptake. Results: Of 299 patients approached, 89 participants have enrolled in the RCT (42 educate, 45 empower), with 89% retention. Approximately 55% are 50+ years old, 85% prefer Spanish, 65% have less than a high school education, and 64% have Medicaid/Medicare. For BC and SDOH risks, 17% are cancer survivors, 81% have financial stress and 42% have other competing SDOH risks (intimate partner violence, housing instability, transit instability). No significant arm differences exist. About 76% have initiated GCT referrals and 43% of participants have received GCT services, including 70% who have been identified as having elevated hereditary risk. Empower participants have been more likely to obtain GCT services than Educate participants, (51% vs. 33%, aOR = 5.44, 95%CI[1.45, 20.40], p=.01) after adjusting for age and self-reported social desirability. Discussion: Emerging data suggest the feasibility of precision cancer prevention strategies through FQHC-community-academic partnerships. Empower approaches may be more effective for enhancing at-risk Latinas’ GCT uptake than Educate approaches, when combined with SDOH navigation and free/low-cost GCT services. Limitations concern generalizability due a small, non-probability based sample. Citation Format: Paola Torres, Carolina Bujanda, Celeste Charchalac-Zapeta, Juanita Arroyo, Pamela Ganschow, Vivian Pan, Nathan Stackhouse, Sage J. Kim, Araceli Lucio, Yamilé Molina. Empowering Latinas to obtain genetic services: Comparing precision cancer prevention strategies [abstract]. In: Proceedings of the 16th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2023 Sep 29-Oct 2;Orlando, FL. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2023;32(12 Suppl):Abstract nr A025.

Possibility Spaces: An invitation to foster transformative experiences of the possible

This article focuses on the applied side of Possibility Studies and the methodologies that could be used to cultivate possibility thinking and empower participants to become agents within the field of the possible. It proposes Possibility Spaces as collaborative pop-up interventions in which theories, methods and practices from across disciplines co-evolve in order to engage with and to serve participants from a wide range of communities around the world. The article starts by outlining a conceptual framework for Possible Action (P-ACT), grounded in the relation between sense of the possible, personal agency and action, which is the theoretical basis for methodologies like PROMPT (Positioning / Repositioning / Original Repositioning / Making / Possibilities Transformed), discussed in great detail. Offered as an example of how to run Possibility Spaces, PROMPT is one among other action-research tools envisioned in the paper. A future of collaboration is ultimately argued for, one in which researchers and practitioners within Possibility Studies work together with local communities to develop more methodologies that foster transformative experiences of the possible – experiences grounded in the continuous interplay between enhanced sense of the possible, personal agency, and the enactment of new possibilities.

Self-service kits to scale knowledge to autonomous teams - concept, application and limitations

In large organizations, it is not trivial to spread knowledge to all teams. Often, individual teams need to handle similar topics and re-invent the wheel. Another scenario is that a group of people with a common role (for example ?guild? in Spotify model) has to distill their practices to make them shareable. Trainings should have empower participants so to apply the learnings easily in their daily businesses. To realize this, the proposed Self-Service Kit (SSK) approach can be used in the context of a holistic methodology that fosters team autonomy while leveraging knowledge spread and sharing throughout a large organization. Such a methodology is presented and instantiated in an enterprise context in facing the mentioned challenges.

Codesign approaches involving older adults in the development of electronic healthcare tools: a systematic review

ObjectiveThe primary aim was to review and synthesise the current evidence of how older adults are involved in codesign approaches to develop electronic healthcare tools (EHTs). The secondary aim was...

511 Automation of Home Food Inventory Scoring to Standardize Reporting, Enhance Clinical Utility, and Operationalize Delivery of Personalized Behavioral Targets

OBJECTIVES/GOALS: The Fulkerson Home Food Inventory (HFI) is widely used to assess the home food environment, a key target of behavioral weight loss trials. However, no standardized report is available. We created publicly available procedures to automate and standardize HFI reporting, yielding a personalized report to enhance this measures clinical utility. METHODS/STUDY POPULATION: Parents in the TEENS adolescent behavioral weight loss trial complete the HFI at 0-, 2-, 4-, 8-, and 12m and receive personalized reports at each timepoint. In REDCap, participants identify foods available in their home. HFI syntax is applied to calculate the obesogenic home food availability score. Categories of foods found are identified, with specific guidance provided to enhance their home food environment. Prior to automation, procedures were time intensive and error prone. To address this, HFI data are exported into Excel by a PowerShell (v7.2) command-line script using Python (v3.10) with the REDCap API. Results are calculated with F# (v6.0) using Microsoft Excel Interop API and inserted into a report template with F# using the Microsoft Publisher Interop API. This process is repeated at each timepoint. RESULTS/ANTICIPATED RESULTS: The new automated procedures significantly reduce time to generate reports and enhance accuracy. Procedures yield a 2-page individualized report that includes the obesogenic home food environment score and identifies categories of healthy items found (e.g., fruits, vegetables, whole grains) as well as areas of improvement (e.g., high-fat dairy products, processed meats). Specific items found in each category are identified. The report identifies food found in the home (e.g., chicken nuggets) with suggested healthier substitutions (e.g., lean chicken breast). This syntax and commands will be made publicly available for use in the scientific and clinical community. DISCUSSION/SIGNIFICANCE: These publicly available procedures optimize, automate, and standardize reporting for the HFI. Procedures improve efficiency within large-scale clinical trials and yield a personalized report to enhance the clinical utility of this measure and empower participants to make informed decisions about their health behaviors.

Facebook as a platform for collecting women's birth stories: Supporting emotional connections between researchers and participants

This paper extends debate on the use of social networking sites in social science research, specifically focusing on their role in creating ‘emotionally connected’ research spaces. Drawing on the authors' experiences of using a closed Facebook group as a platform for collecting women's ‘birth stories’, we explore to potential of Facebook to support the transcendence of traditional researcher/participant relations and empower participants through creating something akin to a ‘Community of Practice’. The project also contributed to a process of inter and intra-personal self-care, which, as a research team, we recognise as an important driver of our research agendas. We acknowledge that the virtual cannot be all-inclusive but conclude that this methodological approach has generated both a rich dataset and a series of emotions for researchers and participants that added value to the research process. We also argue that this approach captured a greater depth of experience and diversity of voice than would have been the case if we had chosen to use traditional face-to-face methods. We call for future research to focus on better understanding some of the challenges related to the appropriateness of Facebook as a platform for hearing the voices of particular socio-cultural groups.

To track or not to track: examining perceptions of online tracking for information behavior research

PurposeThis study investigates perceptions of the use of online tracking, a passive data collection method relying on the automated recording of participant actions on desktop and mobile devices, for studying information behavior. It scrutinizes folk theories of tracking, the concerns tracking raises among the potential participants and design mechanisms that can be used to alleviate these concerns.Design/methodology/approachThis study uses focus groups composed of university students (n = 13) to conduct an in-depth investigation of tracking perceptions in the context of information behavior research. Each focus group addresses three thematic blocks: (1) views on online tracking as a research technique, (2) concerns that influence participants' willingness to be tracked and (3) design mechanisms via which tracking-related concerns can be alleviated. To facilitate the discussion, each focus group combines open questions with card-sorting tasks. The results are analyzed using a combination of deductive content analysis and constant comparison analysis, with the main coding categories corresponding to the thematic blocks listed above.FindingsThe study finds that perceptions of tracking are influenced by recent data-related scandals (e.g. Cambridge Analytica), which have amplified negative attitudes toward tracking, which is viewed as a surveillance tool used by corporations and governments. This study also confirms the contextual nature of tracking-related concerns, which vary depending on the activities and content that are tracked. In terms of mechanisms used to address these concerns, this study highlights the importance of transparency-based mechanisms, particularly explanations dealing with the aims and methods of data collection, followed by privacy- and control-based mechanisms.Originality/valueThe study conducts a detailed examination of tracking perceptions and discusses how this research method can be used to increase engagement and empower participants involved in information behavior research.

Creating playful spaces for collaborative development of online teaching capacity

Transition to online learning presents technological and emotional challenges. Lack of attention to staff-student relationships, coupled with limitations in technology can be demotivating. Losing face-to-face contact has left academic staff with the hard work of reinventing themselves, finding new ways to assert their presence and humanity in what can be experienced as soulless and sometimes soul-destroying online environments. Professional development in online teaching can be reduced to top-down skills training in using specific tools. In this paper we argue for a more playful, collaborative approach to professional development, creating spaces for exploration, risk-taking, enjoyment and participation.
 Ongoing changes in technologies and a shift to almost entirely online learning in the Open University has required us to work differently with students. Most OU tuition is done by associate lecturers, on fractional contracts when this project was carried out, who work closely with students but rarely create curriculum, assessment or strategy. This reflects a wider trend within the HE sector towards casualised, precarious labour, with those closest to students often lacking power.
 This paper reflects on a scholarship project focused on the lived experience of four associate lecturers, negotiating the transition from blended to entirely online tuition, working with two full-time academic staff. Participants differed in experience and enthusiasm for online learning; some keen 'early adopters', others closer to the 'reluctant majority'. Using action learning sets, online spaces and pedagogical practices were explored through shared self-reflections. Building strong relationships between colleagues created space where they could safely experiment. We argue that such 'playful learning' (Nørgård et al., 2017) is key for professional development. It can address reluctance to embrace new technologies and empower participants to reclaim their professional identity and expertise. Participants shifted from considering online learning as an obstacle, to seeing new opportunities to create democratic, inclusive, and collaborative learning spaces.

‘I want to be one of them’: a study using photovoice to explore the inequities of floating children in China

ABSTRACT The photovoice process aims to use photographic images taken by persons from deprived backgrounds to enhance community needs assessments, empower participants, and induce change by informing policy makers of community assets and deficits. This article describes a project on the photovoice of floating children’s (internal migrant children’s), implemented through a community programme to highlight education and health inequalities. The data were collected through in-depth interviews that were evaluated through a thematic analysis. Three major themes were identified from the children’s own words: (1) rural habitus (2) cultural capital constraints and (3) social support. This study provides interesting preliminary insights into the lives of floating children, which could help inform the development of interventions and bring about positive educational and environmental changes for this marginalised population.

Increased Near Activities Function Associated With Increased Glaucoma Medication Adherence Among Support, Educate, Empower (SEE) Participants.

Higher levels of near vision-related quality of life (VRQoL) were associated with higher adherence to glaucoma medications after adjusting for important confounding variables among participants in the Support, Educate, Empower (SEE) personalized glaucoma coaching pilot study. To investigate the association between VRQoL and glaucoma medication adherence. Subjects were recruited for the SEE program, a prospective noncontrolled cohort study examining the impact of a personalized coaching program on glaucoma medication adherence. Glaucoma patients seen at the University of Michigan over 40 years old, taking ≥1 glaucoma medication, and self-reported poor adherence on 2 validated scales were recruited. Demographic details and VRQoL using the 25-item National Eye Institute Visual Function Questionnaire (NEI VFQ-25) were collected. Participants' medication use for each prescribed glaucoma medication was captured electronically using a medication events monitoring system. The association between VRQoL and medication adherence was assessed with Pearson correlation coefficient (r) and linear regression. Among the 95 eligible participants 49.5% were female, 55.3% were Caucasian, and mean age (±SD) was 63.8±10.5 years. Mean adherence to glaucoma medication was 73.8%±21.0%. Mean NEI VFQ-25 composite score was 81.6±14.5. Better medication adherence was significantly and positively correlated with better functioning in domains of ocular pain (r=0.20, P=0.048), near activities (r=0.29, P=0.004), and role difficulties (r=0.22, P=0.036). Linear regression models adjusting for known correlates of medication adherence (age, sex, race, income), showed a 10-unit increase in self-perceived near activities function was associated with a 2.2% increase in medication adherence (95% confidence interval, 1.0%-5.4%; P=0.0056). Better self-perceived near activities function was associated with increased glaucoma medication adherence.

Photo Elicitation and Photovoice: How Visual Research Enables Empowerment, Articulation and Dis-Articulation

Abstract Photo elicitation and photovoice are valuable tools for researchers of churches and congregations. Photo elicitation and photovoice empower participants, turning them from passive objects of study into emancipated co-creators of research and empowered co-creators of data. We used photo elicitation and photovoice in our separate studies of understandings of communion among young Baptists and understandings of culture among church leaders in Hull. Although our research areas were very different, we found similarities in the way that images can empower participants and in doing so, enable them to be both articulate and dis-articulate, arguing that this dis-articulation is valuable in discussions of belief and experience.

Potential of Peer Guidance to Empower Migrants for Employment

Peerness is a common approach to learning, especially in Nordic adult education, but is increasingly adopted by European Union (EU)-funded projects that aim to improve migrants’ employability. This article discusses action research that evaluated an ESF-funded project, run by a Finnish popular adult education association in collaboration with vocational adult education institutes, NGOs, and a trade union. The project trained migrants to become peer group guides and empower migrant-background participants for employment. The training prepared guides to become experiential experts, but increased the distance between the participants and themselves. The guidance could even strengthen the otherness of participants when the peerness was based solely on sharing a migrant background. Voluntary peer guidance may reinforce this separation, but dependence on ESF funding also shapes mainstream adult education; therefore, the empowerment of migrants should build on collaboration between experiential experts and guidance professionals as part of the regular adult education system.

\u201cYou talk about problems until you feel free\u201d: South African adolescent girls\u2019 and young women\u2019s narratives on the value of HIV prevention peer support clubs

BackgroundDaily oral pre-exposure prophylaxis (PrEP) can reduce HIV infection in adolescent girls and young women if used consistently during periods of risk. The EMPOWER study evaluated peer-based clubs incorporating an empowerment curriculum offered to adolescent girls and young women (16–24 years) in South Africa and Tanzania for adherence support.MethodsUsing serial in-depth interviews (n = 33), we assessed the benefits and challenges of club attendance among 13 EMPOWER participants in the Johannesburg site who were randomised to clubs. We used a summary matrix of coded data to support a narrative, case-based analysis. Four case studies are presented.ResultsClub participants reported benefits such as increased self-esteem and self-efficacy, reduced isolation, and greater insight into gender-based violence and strategies to address it. Day-to-day PrEP adherence was not the only topic discussed in clubs; participants also appreciated the safe space for sharing problems (such as relationship conflict and PrEP stigma) and found interactive exercises helpful in improving partner communication.ConclusionsFindings support the use of peer-based clubs using a structured empowerment approach, which may offer valuable PrEP initiation support to adolescent girls and young women in settings with high HIV and gender-based violence prevalence.Trial registrationPan African Clinical Trials Registry PACTR202006754762723, 5 April 2020, retrospectively registered.

Understanding behavioural changes through community-based participatory research to promote oral health in socially disadvantaged neighbourhoods in Southern Sweden

ObjectivesInequalities in oral health have been on the rise globally. In Sweden, these differences exist not between regions, but among subgroups living in vulnerable situations. This study aims at understanding...

Photovoice: documenting lives in aquaculture and fisheries through a gendered photo lens

Photovoice is a research approach in which participants use photography to tell stories of issues important to them. Is Photovoice a suitable feminist research method for gender in fisheries and aquaculture? Literature on feminist research methodologies was reviewed to establish four criteria, namely, does Photovoice: (1) embody feminist research approaches? (2) use safe methods and sharing of results? (3) enable inclusion and empowerment for women? (4) reach decision makers as a potential vehicle for change? Forty articles on Photovoice based research were assessed for their relevance to the four criteria and 24 of these selected for detailed review. The evidence is that Photovoice can engage and empower women – as researchers - to gain insights into their own worlds, widen their community networks, reflect on current reality, and portray through photos and explanations what would be a preferred better reality. It also provides the primary researcher an ‘inside looking out’ perspective. Photovoice methods are aligned with feminist research approaches because they consider ethical issues to safeguard and potentially empower participants. Participants can gain empowerment by accessing decision makers who are normally beyond their reach, although action and change is not guaranteed. In developed, and developing countries, where the majority of women are employed, Photovoice research is applicable to fisheries and aquaculture.

From theory to practice: implementing a standardized, interactive education session on oral anticancer medication (OAM) for patients and their caregivers.

Self-administration at home and decreased visits to see health care professionals bring patients on oral anticancer medication (OAM) and their caregivers to become experts in handling medication, managing adverse events, and making sure that they adhere to treatment. This project aimed to implement a standardized education group session for patients starting an OAM regimen and their caregivers that would build new knowledge, validate comprehension of information, increase satisfaction, and empower participants in self-management. A group session led by an oncology nurse was developed. The theoretical section consisted of short videos that include both verbal and visual explanations. The practical component consisted of quizzes with electronic recordings and instant answers. Turning Point technology was used to compile and analyze the data. Over a 2-year period, 124 patients and 79 caregivers participated in the group sessions. More than 111h were saved by giving standardized group sessions instead of individual teachings. The participants' level of confidence regarding the essential concepts to master significantly increased following the group sessions. The results ranged from 18% of participants who answered 4 or 5 on a five-point Likert-type scale before the session to 100% who answered 4 or 5 after the group session. 94% of participants responded with a rating of 4 or 5 when asked if they were satisfied with the overall interactive group session. It is crucial that caregivers participate in the initial OAM teaching. The involvement of the interdisciplinary team was crucial in meeting the informational needs of patients. A standardized group session accessible for viewing and use by all health care professionals and patients simplifies the process of sharing high-quality learning materials in a technological society.