Participatory Action Research Among People With Serious Mental Illness: A Scoping Review.

Participatory action research (PAR) is a research approach that creates spaces for marginalized individuals and communities to be co-researchers to guide relevant social change. While working toward social transformation, all members of the PAR team often experience personal transformation. Engaging people with serious mental illness (PSMI) in PAR helps them to develop skills and build relationships with stakeholders in their communities. It supports positive changes that persist after the completion of the formal research project. With the increasing recognition of PAR's value in PSMI, it is helpful to consider the challenges and advantages of this approach to research with this population. This review aimed at determining how PAR has been conducted with PSMI and at summarizing strategies used to empower PSMI as co-researchers by engaging them in research. This scoping review followed five steps Arkesy and O'Malley (2005) outlined. We charted, collated, and summarized relevant information from 87 studies that met the inclusion criteria. We identified five strategies to empower PSMI through PAR. These are to build capacity, balance power distribution, create collaborative environments, promote peer support, and enhance their engagement as co-researchers. In conclusion, PAR is an efficient research approach to engage PSMI. Further, PSMI who engage in PAR may benefit from strategies for empowerment that meet their unique needs as co-researchers.

Mobile health technology for hypertension management with Hmong and Latino adults: mixed-methods community-based participatory research.

OBJECTIVE: To identify Hmong and Latino adults' perspectives about a mHealth-based care model for hypertension (HTN) management involving blood pressure (BP) self-monitoring, electronic transmission of BP readings, and responsive HTN medication adjustment by a provider team. DESIGN: We conducted a mixed-methods formative study with 25 Hmong and 25 Latino participants with HTN at an urban federally-qualified health center. We used a tool to assess HTN knowledge and conducted open-ended interviews to identify perspectives about mHealth-based care model. RESULTS: While most participants agreed that lowering high blood pressure decreased the risk of strokes, heart attacks, and kidney failure, there were gaps in medical knowledge. Three major themes emerged about the mHealth-based care model: (1) Using mHealth technology could be useful, especially if assistance was available to patients with technological challenges; (2) Knowing blood pressures could be helpful, especially to patients who agreed with doctors' medical diagnosis and prescribed treatment; (3) Transmitting blood pressures to the clinic and their responsive actions could feel empowering, and the sense of increased surveillance could feel entrapping. Some people may feel empowered since it could increase patient-provider communication without burden of clinic visits and could increase involvement in BP control for those who agree with the medical model of HTN. However, some people may feel entrapped as it could breach patient privacy, interfere with patients' lifestyle choices, and curtail patient autonomy. CONCLUSIONS: In general, Hmong and Latino adults responded positively to the empowering aspects of the mHealth-based care model, but expressed caution for those who had limited technological knowledge, who did not agree with the medical model and who may feel entrapped. In a shared decision-making approach with patients and possibly their family members, health care systems and clinicians should explore barriers and potential issues of empowerment and entrapment when offering a mHealth care model in practice.

Can Photovoice foster the development of social support?

Photovoice is a participatory, photo-based research method that differs from conventional (non-participatory) research in that the process is meant to be empowering and beneficial. However, empirical research on the Photovoice process remains very limited. Based on feedback from participants who reported Photovoice helped them develop closer relationships, we examine whether engaging in Photovoice fosters social support. Transcripts from a Photovoice study on wellness in mental health Clubhouses (voluntary, community mental health centers) were retrospectively analyzed for instrumental support, appraisal, informational support, and emotional support. Appraisal was the most common form of social support identified, and was primarily expressed through peer praise for photos and insights. Informational support included advice on managing symptoms, promoting wellness, and navigating challenges. Instrumental support was fostered by learning the tangible skill of digital photography and by supporting fellow members with physical or visual limitations to participate in the process. Emotional support was cultivated through encouragement, identification of shared experiences, and connection through humor. In sum, the findings suggest that Photovoice has the potential to foster social support, which may support relational empowerment.

"We could see our real selves:" The COVID-19 syndemic and the transition to telehealth for a school-based prevention program for newcomer Latinx immigrant youth.

Newcomer Latinx immigrant youths in the United States are currently in a syndemic of increased risk of behavioral health concerns, disparities in access to related services, and are disproportionately impacted by the COVID-19 pandemic. This study used qualitative inquiry to examine the impact that the transition to telehealth had on a school-based group prevention program for immigrant youth, Fuerte, within the context of this syndemic. Data included semi-structured interviews with group leaders, and focus groups with youth program participants. Themes indicated both positive and negative impacts of the transition to telehealth on program component implementation, youth participant engagement, and youth participant social connectedness. Despite the telehealth model, youth participants reported that they felt socially connected to each other through the program. This study's results provide implications for the potential value and drawbacks of a telehealth prevention model for newcomer immigrant youth, as well as deepening understanding of how virtual behavioral health programs may operate in socially isolating contexts around the world.

Transformative impacts of a civic leadership program created by and for refugees and immigrants.

Immigrants and refugees are severely underrepresented at all levels of political decision-making in the United States. These groups face significant barriers to civic and political participation and leadership, despite a frequent commitment to community care and engagement. There is an urgent need to address immigrant integration and underrepresentation through transformative means that go beyond voting to create a more inclusive and socially just society. We investigated outcomes associated with participation in an immigrant integration program designed to increase immigrants' access to civic engagement through a community-based participatory research and action process that centered the voices, experiences, and wisdom of refugees and immigrants. Thirty immigrants and refugees representing at least eight different communities participated in semi-structured interviews. Results illustrate how the program assisted in transforming participants' consciousness, skills, and relationships related to meaningful civic engagement and realizing their voice, power, and rights. These results emphasize the impact and potential of community based participatory research to transform individual and collective efficacy, consciousness, and capabilities-a vital first step in transformative justice.

Barriers and Facilitators to Accessing Digital Health Tools Faced by South Asian Canadians in Surrey, British Columbia: Community-Based Participatory Action Exploration Using Photovoice.

BACKGROUND: South Asian community members in Canada experience a higher burden of chronic disease than the general population. Digital health innovations provide a significant opportunity to address various health care challenges such as supporting patients in their disease self-management. However, South Asian community members are less likely to use digital tools for their health and face significant barriers in accessing them because of language or cultural factors. OBJECTIVE: The aim of this study is to understand the barriers to and facilitators of digital health tool uptake experienced by South Asian community members residing in Canada. METHODS: This study used a qualitative community-based participatory action research approach. Residents from Surrey, British Columbia, Canada, who spoke 1 of 4 South Asian languages (Hindi, Punjabi, Urdu, or Tamil) were invited to participate in focus group discussions. A subsample of the participants were invited to use photovoice methods in greater depth to explore the research topics. RESULTS: A total of 197 participants consented to the focus group discussions, with 12 (6.1%) participating in the photovoice phase. The findings revealed several key obstacles (older age, lack of education, and poor digital health literacy) and facilitators (social support from family or community members and positive attitudes toward technology) to using digital health tools. CONCLUSIONS: The results support the value of using a community-based participatory action research approach and photovoice methods to engage the South Asian community in Canada to better understand digital health competencies and needs. There were several important implications for policy makers and future research, such as continued engagement of community leaders by health care providers and administrators to learn about attitudes and preferences.

Photovoice and Instagram as Strategies for Youth Engagement in Disaster Risk Reduction.

Community involvement is essential for an all-of-society approach to disaster risk reduction. This requires innovative consultation methods, particularly with youth and during pandemic restrictions. This article outlines methods used for a Photovoice project where we brought together student co-researchers from multiple levels (high school, undergraduate, and graduate health sciences) to explore the topic of youth engagement in disaster risk reduction. Over a two-year period, our team used Photovoice as an arts-based participatory method to collaborate with members of our EnRiCH Youth Research Team. We adapted the protocol to continue our project during the COVID-19 pandemic and presented our work in a Photovoice exhibition using Instagram. This article was written from the perspectives of high school and university students on the project. Our hybrid Photovoice protocol facilitated participation through the pandemic, including a virtual presentation at an international conference and online consultation with the Canadian Red Cross.

Gurus and Griots: Revisiting the research informed consent process in rural African contexts.

BACKGROUND: Researchers conducting community-based participatory action research (CBPAR) in highly collectivistic and socioeconomically disadvantaged community settings in sub-Saharan Africa are confronted with the distinctive challenge of balancing universal ethical standards with local standards, where traditional customs or beliefs may conflict with regulatory requirements and ethical guidelines underlying the informed consent (IC) process. The unique ethnic, socioeconomic, and cultural diversities in these settings have important implications for the IC process, such as individual decisional autonomy, beneficence, confidentiality, and signing the IC document. MAIN TEXT: Drawing on insights and field observations from conducting CBPARs across several rural, highly communal, low literate, and low-income communities in Ghana, we discuss some theoretical, ethico-cultural, and methodological challenges associated with applying the universal, Western individualistic cultural value-laden IC process in sub-Saharan Africa. By citing field situations, we discuss how local cultural customs and the socioeconomic adversities prevalent in these settings can influence (and disrupt) the information disclosure process, individual decisional authority for consent, and voluntariness. We review the theoretical assumptions of the Declaration of Helsinki's statement on IC and discuss its limitations as an ultimate guide for the conduct of social science research in the highly communal African context. We argue that the IC process in these settings should include strategies directed at preventing deception and coercion, in addition to ensuring respect for individual autonomy. We urge Universities, research institutions, and institutional review boards in Africa to design and promote the use of context-appropriate ethical IC guidelines that take into consideration both the local customs and traditional practices of the people as well as the scientific principles underpinning the universal IC standards. CONCLUSION: We recommend that, rather than adopt a universal one-size-fits-all IC approach, researchers working in the rural, highly collectivistic, low literate, socioeconomically disadvantaged settings of sub-Saharan Africa should deeply consider the roles and influence of cultural values and traditional practices on the IC and the research process. We encourage researchers to collaborate with target communities and stakeholders in the design and implementation of context-appropriate IC to prevent ethics dumping and safeguard the integrity of the research process.

An Evaluation of Cancer Education Webinars in Alaska.

Culturally relevant health promotion is an opportunity to reduce health inequities in the cancer burden, and online learning is an emerging avenue for health promotion. To address a desire for synchronous online cancer education, a project team offered ten 1-hr cancer education webinars for Alaska's rural tribal health workers. The project was guided by the framework of Community-Based Participatory Action Research, honored Indigenous Ways of Knowing, and was informed by Empowerment Theory. The evaluation of this community-based intervention included end-of-webinar surveys. Between February and April 2018, 41 surveys were completed by 11 unique participants. All participants reported that, as a result of the webinars, they planned both to change their own behavior to reduce cancer risk, and to talk with their patients more often about cancer prevention strategies such as screenings, physical activity, tobacco cessation, and eating healthy. While the webinars addressed desires for synchronous actions to support cancer learning, and led to intentions to positive change behaviors, the ten webinars engaged far fewer unique learners than the team's asynchronous cancer education modules. This experience may inform other cancer educators' efforts to develop, implement, and evaluate online learning opportunities. Despite the small numbers, these webinars resulted in increased learners' intent to reduce cancer risk behaviors, share cancer information, and improved learners' capacity to talk about cancer in their communities.

Strong Carers, Strong Communities: a cluster randomised controlled trial to improve wellbeing of family carers of older people in remote Aboriginal communities.

INTRODUCTION: Unpaid carers have a crucial role in supporting older people with cognitive impairment and disability, but their own health and wellbeing are often impacted. There are limited data on how carer strain, depression and empowerment may be improved for carers. METHODS: This was a cluster randomised controlled trial to compare the effect of a carer support program developed with a community-based participatory action research (PAR) approach to the delivery of information sessions to 100 carers of people aged 45 years or more living in four remote Aboriginal communities in Western Australia. RESULTS: The mean age of carers was 38.3±14.9 years, 76% were female and 77% were children or grandchildren of the care recipient. Carer strain and empowerment measures did not change significantly between baseline and follow-up. A statistically significant decrease in depression scores was observed in the PAR group. However, decreases were observed in both the PAR and control groups, and the change in scores did not differ significantly between groups. Depression scores decreased most in those who had not attended high school. Overall, the proportion of participants meeting criteria for depression decreased from 18.8% at baseline to 8.3% at follow-up. CONCLUSION: A carer support program was of equivocal benefit, although this research demonstrates that the wellbeing of carers in remote Aboriginal communities can potentially be markedly improved by outreach strategies.