Project Lotus: A really cool community-based initiative assisting women post-homelessness

In Canada, recent conservative estimates report upwards of 235,000 individuals are homeless on a given night. Of those experiencing precarious housing situations, women make up approximately 30% and are among the most vulnerable. Their residential insecurity has been further exacerbated with the community and social restrictions of the COVID-19 pandemic. Existing resources that assist women experiencing homelessness or housing insecurity are often stretched to the limit dealing with emergency and crisis housing situations, with less focus on post-shelter supports. To address this issue, a community-based participatory research initiative ‘Project Lotus - Hope Together’ was established in Montreal. Grounded in the World Health Organization’s Commission on Social Determinants of Health Framework, the overarching goal of this research is to co-design a housing supports program for women leaving a shelter stay. We created a cross-sectorial Advisory Committee consisting of women with lived experiences of homelessness, service providers, community leaders, and researchers. To date, we have conducted preliminary research (literature review, interviews with women with lived experience of homelessness, stakeholder meetings) to identity what has assisted women through this transition, and what barriers exist. We have also held virtual community consultation meetings to discuss preliminary findings of recommendations of key components that should be in a post-shelter support program for women. This presentation outlines the current findings and highlights the importance of participatory research. Implementing whole person care in the area of women’s homelessness requires both a comprehensive and individualized approach to help women and children secure home, health, and a sustainable future.

Supporting Self-Management and Quality of Life in Bipolar Disorder with the Beta PolarUs App: Protocol for a Mixed-Methods Study (Preprint)

BACKGROUND Quality of life (QoL) is increasingly recognised as a key outcome of self-management interventions for bipolar disorder (BD). Mobile phone applications (apps) can increase access to evidence-based self-management strategies and provide real-time support. However, while individuals with lived experience desire support with monitoring and improving broader health domains, existing BD apps largely target mood symptoms only. Further, evidence from the broader mHealth literature has shown that the desires and goals of end-users are not adequately taken into account during app development, and as a result engagement with mental health apps is suboptimal. To capitalise on the potential of apps to optimise wellness in BD, there is a need for interventions developed in consultation with real-world users that are designed to support QoL self-monitoring and self-management. Objective: This mixed methods pilot study is designed to evaluate the beta version of the newly developed PolarUs app, which aims to support QoL self-monitoring and self-management in people with BD. Developed using a community-based participatory research framework, the PolarUs app builds on the web-based adaptation of a BD-specific QoL self-assessment measure, and integrates material from a web-based portal providing information on evidence-informed self-management strategies in BD. OBJECTIVE The primary objectives of this project are to: (1) evaluate PolarUs app feasibility (via behavioral usage metrics); (2) evaluate PolarUs impact (via the Brief Quality of Life in Bipolar Disorders, QoL.BD scale, our primary outcomes measure); and (3) explore engagement with the PolarUs app (via both quantitative and qualitative methods). METHODS Study participants will be North American residents (N=150) aged 18-65 years with a DSM-5 diagnosis of BD-I, BD-II or BD not otherwise specified (NOS) as assessed by a structured diagnostic interview. An embedded mixed-methods research design will be adopted; qualitative interviews with a purposefully selected sub-sample (~n=30) of participants will be conducted to explore in more depth feasibility, impact and engagement with the PolarUs app over the 12-week study period. RESULTS At the time of publication of this protocol, the development of the beta version of the PolarUs app is complete. Participant enrollment is expected to begin in February 2022. Data collection is expected to be completed by December 2022. CONCLUSIONS Beyond contributing knowledge on the feasibility and impacts of a novel app to support QoL and self-management in BD, this study is also expected to provide new knowledge on engagement with mHealth apps. Furthermore, it is expected to function as a case study of successful co-design between individuals living with BD, clinicians who specialise in the treatment of BD, and BD researchers, providing a template for future use of community-based participatory research frameworks in mHealth intervention development. Results will be used to further refine the PolarUs app and inform the design of a larger clinical trial.

Sex: What Is the Big Deal? Exploring Individuals’ with Intellectual Disabilities Experiences with Sex Education

This article offers perspectives shared by self-advocates in the first phase of a community-based participatory research project untaken to address barriers that individuals with intellectual disabilities face with respect to sexual health knowledge. Using descriptive qualitative methods, we interviewed 19 individuals with intellectual disability about their experiences and knowledge related to sexual health. The research question guiding this project was: What are self-advocates’ with intellectual disabilities experiences learning about sexual health and sexuality? The findings highlight that participants faced barriers and lack of access to sexual health education, and while they learned about sexual health through formal sexual health education, frequently this knowledge came through lived experience. Finally, the findings underscore that participants knew what they wanted with respect to sexual health education and offered recommendations. The importance of accessible sexual health education for self-advocates that supports their rights and desires to express their sexuality and sexual agency is highlighted.

Expanding the Reach of an Evidence-Based, System-Level, Racial Equity Intervention: Translating ACCURE to the Maternal Healthcare and Education Systems

The abundance of literature documenting the impact of racism on health disparities requires additional theoretical, statistical, and conceptual contributions to illustrate how anti-racist interventions can be an important strategy to reduce racial inequities and improve population health. Accountability for Cancer Care through Undoing Racism and Equity (ACCURE) was an NIH-funded intervention that utilized an antiracism lens and community-based participatory research (CBPR) approaches to address Black-White disparities in cancer treatment completion. ACCURE emphasized change at the institutional level of healthcare systems through two primary principles of antiracism organizing: transparency and accountability. ACCURE was successful in eliminating the treatment completion disparity and improved completion rates for breast and lung cancer for all participants in the study. The structural nature of the ACCURE intervention creates an opportunity for applications in other health outcomes, as well as within educational institutions that represent social determinants of health. We are focusing on the maternal healthcare and K-12 education systems in particular because of the dire racial inequities faced by pregnant people and school-aged children. In this article, we hypothesize cross-systems translation of a system-level intervention exploring how key characteristics of ACCURE can be implemented in different institutions. Using core elements of ACCURE (i.e., community partners, milestone tracker, navigator, champion, and racial equity training), we present a framework that extends ACCURE's approach to the maternal healthcare and K-12 school systems. This framework provides practical, evidence-based antiracism strategies that can be applied and evaluated in other systems to address widespread structural inequities.

Hospital-to-Shelter/Housing Interventions for Persons Experiencing Homelessness

Persons with lived and living experiences of homelessness (PWLEs) commonly use hospitals and emergency departments to access healthcare yet support for transitions from hospital to shelter/housing can be challenging to access. To improve the continuity of care and health outcomes for PWLEs who are being discharged from hospital, a more complete understanding of two hospital-to-shelter/housing programs in Metro Vancouver, Canada was sought. Using a community-based participatory research approach, we conducted in-depth interviews in-person or by phone. Participants included eight healthcare and shelter/housing decision-makers and providers and a convenience sample of ten program participants (two females and eight males who ranged in age from 31 to 74 years old; average = 50 years old). Data were analyzed in NVivo 12 to identify successes including: 1) achieving health stability and recovery following hospital discharge; 2) having privacy and freedom while in the program; 3) building relationships with providers; 4) having formal support to find housing; and 5) cross-sector relationships between providers. Challenges included: 1) limited availability of affordable and appropriate housing; 2) other guests’ ways of life; 3) complex needs versus limited after-care resources; and 4) inequities in program access. While hospital-to-shelter/housing programs can serve as intervention opportunities to connect PWLEs to permanent housing, discharge plans need to acknowledge the local limitations on housing availability and offer short-term options for patients who require sub-acute rest and convalescence.

Spina bifida care, education, and research: A multidisciplinary community in a global context

Worldwide neural tube defects, such as encephalocele and spina bifida (SB), remain a substantial cause of the global burden of disease; and in the US, Latinos consistently have a higher birth prevalence of SB compared with other ethnic groups. From limited access and fragmented care, to scarcely available adult services, many are the challenges that besiege those living with SB. Thus, to provide inclusion and active involvement of parents of children and adults with SB from all communities, innovative approaches will be required, such as community-based participatory research and culturally competent learning collaboratives. Promisingly, the Spina Bifida Community-Centered Research Agenda was developed by the community of people living with SB through the Spina Bifida Association (SBA). Additionally, the SBA will host the Fourth World Congress on Spina Bifida Research and Care in March of 2023. Just as the SBA is clearly committed to this population, the Journal of Pediatric Rehabilitation Medicine will continue to serve as a catalyst for SB care, education, and research across the SB population in a global context.

Prioritizing Community in Research Decision-Making Through Partnership

In behavioral intervention research, taking a community-based participatory research approach enhances recruitment and retention while facilitating the transfer of research findings into social change. Successes with recruitment and retention are secondary to enacting fundamental principles of trust, reciprocity, cultural humility, empowerment, and respect. This presentation will describe a longitudinal clinical trial in a Southwest borderlands community, Oyendo Bien. The study was co-developed and implemented with community partnership throughout the research process. Dyads were recruited to participate in a community-delivered group education and support program addressing hearing loss for Spanish-speakers age 50+ years (n=132 participants randomized). We highlight the critical role that community health workers (promotoras) held as members of the research team. Furthermore, we describe an innovative approach for language mediation that integrates and empowers community participation. This presentation will include examples of lessons learned from the community in collaborating to conduct research in a way that truly serves.

Correction to: Diverse community leaders’ perspectives about quality primary healthcare and healthcare measurement: qualitative community-based participatory research

An amendment to this paper has been published and can be accessed via the original article.

A Food Box Intervention to Reduce Blood Pressure in Native American Adults With Hypertension: The CHEERS Study

Diet-related chronic diseases, such as hypertension and obesity, are prevalent in Native American (NA) communities where poor food environments are prominent and healthy food access is limited. The Chickasaw Healthy Eating Environments Research Study (CHEERS) is an NIH-funded study aimed to improve Body Mass Index and blood pressure control among NA adults with uncontrolled hypertension. This multi-level randomized trial, guided by a community-based participatory research orientation, was co-created by tribal and university partners and is implemented within the Chickasaw Nation of Oklahoma. We created hypertension-specific food boxes that contained DASH diet foods, coupons for purchasing vegetables and fruits, educational materials, and heart-healthy recipes for supporting healthy eating. Food boxes were packed and shipped monthly to intervention participants with a 30-day supply of: one fruit serving/day, one vegetable serving/day, one serving of unsalted nuts or seeds/day, one serving of beans or lentils/day, and two servings of fatty fish/week. We will present our participatory approach in co-developing the CHEERS study methods, findings with a focus on older adults, and lessons learned. CHEERS is the first innovative food box intervention to be conducted in NA communities. Food box interventions show promise in improving dietary intake and reducing hypertension and obesity in rural and poor food environments.