“Together we are making a difference”: participatory research with families living on a low income during the pandemic

Human immunodeficiency virus clinical trials are increasingly being conducted in sub-Saharan Africa. There is a tension between the pressure to increase levels of research participation and the need to ensure informed consent and protection of participants' rights. Researchers need to be aware of the particular ethical issues that underpin Human immunodeficiency virus research conduct in low income settings. This necessitates hearing from those who have participated in research and who have direct experience of the research process. This review aimed to synthesize and present the best available evidence in relation to Human immunodeficiency virus research participation in sub-Saharan Africa, based on the views and experiences of research participants. The review included studies whose participants were current or former adult Human immunodeficiency virus research participants from sub-Saharan African countries. Views, experiences, attitudes, understandings, perceptions and perspectives of Human immunodeficiency virus research participants in sub-Saharan Africa. Types of studies: This review considered studies that focused on qualitative data, including, but not limited to, designs such as phenomenology, ethnography, grounded theory, action research and feminist research. A three-step search strategy was utilized. Seven databases (CINAHL, Ovid MEDLINE (R) 1946, ASSIA, PsychInfo, Web of Science, EMBASE, and African Index Medicus) were searched with no limitation to years of publication, followed by hand searching of reference lists. Only studies published in the English language were considered. Methodological quality was assessed using the Qualitative Assessment and Review Instrument developed by the Joanna Briggs Institute. Qualitative findings were extracted using the Joanna Briggs Institute Qualitative Assessment and Review Instrument. Qualitative research findings were pooled using a pragmatic meta-aggregative approach and the Joanna Briggs Institute Qualitative Assessment and Review Instrument software. Twenty-one studies were included in the review. One hundred and thirty-six findings were extracted from included studies and clustered into 14 categories based on similarities in meaning. These were further synthesized into five synthesized findings, set out below; i) Individuals are motivated to participate in Human immunodeficiency virus research due to a range of perceived benefits for themselves and others. ii) Participation in research can be associated with considerable fear and uncertainty. iii) Participation in Human immunodeficiency virus research is strongly influenced by social relationships (e.g. support or disapproval of family or friends) and social-economic and domestic factors (such as time or finances). iv). The meanings of research programs and processes are constructed within a context of existing lay beliefs, experiences and social relations associated with Human immunodeficiency virus and biomedical interventions in general. This means that local people may understand research and its processes very differently to health professionals. v) Participants' research experiences and their continued participation in Human immunodeficiency virus research are influenced by the research clinic context and the nature of their interactions with research staff. Individuals are generally willing to participate in Human immunodeficiency virus research. However their understanding of the process can be limited, and the experience may may cause anxiety or have negative consequences. Furthermore longer-term participation may become problematic due to socio-economic pressure or social commitments. The review suggests a need to develop better ways to explain research processes and to support participants, when/if they encounter problems. There is also a need to engage better with communities in order to educate them about HIV research programs. All the included studies focused on experiences around research enrolment and participation (retention); however there is a complete evidence gap on experiences of trial closure.

Background Despite recognition that social determinants are critical to health outcomes, many groups, including those with lower incomes, racial/ethnic minorities, and other historically marginalized populations, continue to experience significant social and structural barriers to care. There is need for research that incorporates patient and stakeholder engagement in developing, testing, and disseminating interventions to improve outcomes for patient populations that have been marginalized in the health system. Patients who use a language(s) other than English (LOE) for healthcare communication are at increased risk for experiencing adverse events and worse health outcomes in healthcare settings, including in paediatric hospitals. Canadian census data indicates 12.7% of Canadians predominantly speak a language other than French or English. This work aims to generate knowledge to improve health outcomes for children and families who speak LOE. Objectives (1) To understand the lived experience of families who speak LOE around the hospitalization of their child and (2) To understand the perspectives of patients and families who speak LOE on how the healthcare system can improve care during hospitalization. Design/Methods The premise of this study is participatory research. We designed a qualitative study involving children hospitalized in the General Paediatric Inpatient Unit at the Hospital for Sick Children. The study includes family caregivers of children age 0 to 18 years who identify as speaking LOE. Children and families could speak any language that we were able to obtain interpreter support for. We excluded patients that spoke a traditional Indigenous language as we noted this work required a separate study in partnership with the Indigenous community. We conducted semi-structured virtual individual interviews with children and families post-discharge with a medical interpreter. An interview guide was developed and transcripts were analyzed using thematic analysis. We took several steps to ensure an effective study design given our goals of participatory research including ensuring patient and family engagement throughout the design process. Results 19 families participated in the interviews and 16 different languages were represented amongst our participant groups. Our study is unique in especially unique in it's ability to recruit and interview individuals with so many different primary languages. Our study provides rich insight into opportunities within the paediatric inpatient setting for quality improvement to address the health disparities experienced by patients and families who use LOE for healthcare communication. Our analysis of the interviews identify several themes that provide insight into the lived experience of patients and families who use LOE for healthcare communication. 1) Inconsistent interpreter use affects communication “in the moment” and the ability to develop an “overall understanding” of the current clinical situation and broader healthcare context. Our participants note a "snowball effect" when interpreters are not consistently utilized. 2) In addition to language, multiple additional social factors contribute to an increased sense of vulnerability and modulates how families “trust” the healthcare system. 3) Despite families expressing positive experiences, they noted that they did not, nor expect to feel like they “belonged” within the healthcare system. It is critical to recognize the complex interplay between many factors surrounding our participants’ identities. Though they use a LOE for healthcare, the intersectional marginalization they experience was thoroughly represented during our conversations Conclusion Our research aimed to take a participatory approach to consider the lived experience of patients and families who use LOE for healthcare communication. This work builds on the current literature on patient and family centered care, experiences of families who speak LOE and participatory community-based research in the paediatric hospital settings. Our study's findings support the development of a research and intervention agenda in Canada to improve health outcomes for patients and families with LOE.

Rates of overweight children and adolescents have nearly tripled over the past 30 years. Many barriers exist to healthy eating and physical activity for children and adolescents, including factors in the school and community environment. It is these modifiable school environmental factors that led to the development of the Nutrition Friendly Schools and Communities (NFSC) model to prevent the development of overweight in children and adolescents. Development of the NFSC model built upon the Coordinated School Health Program, the Baby Friendly Hospital Initiative, Participatory Research, and Empowerment Evaluation. The purpose of the NFSC environmental intervention is to actively engage the school community to prevent overweight in students through a multi-level participative intervention that facilitates coordinated changes in the school environment in the following areas: health education, physical education, health services, food services, school policy, staff wellness, psychosocial services, and family/community involvement. The NFSC model is the basis by which school communities develop a plan and evaluation that lead to a healthy school environment and prevent the development of overweight in children. A pilot study of the NFSC model is currently being conducted in eight low—income, minority, urban schools. This paper describes the development of the NFSC model and criteria.

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BackgroundDespite progressive health policy, disease burdens in South Africa remain patterned by deeply entrenched social inequalities. Accounting for the relationships between context, health and risk can provide important information for equitable service delivery. The aims of the research were to initiate a participatory research process with communities in a low income setting and produce evidence of practical relevance.MethodsWe initiated a participatory action research (PAR) process in the Agincourt health and socio–demographic surveillance site (HDSS) in rural north–east South Africa. Three village–based discussion groups were convened and consulted about conditions to examine, one of which was under–5 mortality. A series of discussions followed in which routine HDSS data were presented and participants’ subjective perspectives were elicited and systematized into collective forms of knowledge using ranking, diagramming and participatory photography. The process concluded with a priority setting exercise. Visual and narrative data were thematically analyzed to complement the participants’ analysis.ResultsA range of social and structural root causes of under–5 mortality were identified: poverty, unemployment, inadequate housing, unsafe environments and shortages of clean water. Despite these constraints, single mothers were often viewed as negligent. A series of mid–level contributory factors in clinics were also identified: overcrowding, poor staffing, delays in treatment and shortages of medications. In a similar sense, pronounced blame and negativity were directed toward clinic nurses in spite of the systems constraints identified. Actions to address these issues were prioritized as: expanding clinics, improving accountability and responsiveness of health workers, improving employment, providing clean water, and expanding community engagement for health promotion.ConclusionsWe initiated a PAR process to gain local knowledge and prioritize actions. The process was acceptable to those involved, and there was willingness and commitment to continue. The study provided a basis from which to gain support to develop fuller forms of participatory research in this setting. The next steps are to build deeper involvement of participants in the process, expand to include the perspectives of those most marginalized, and engage in the health system at different levels to move toward an ongoing process of action and learning from action.

Underserved breast cancer patients and survivors are typically offered fewer opportunities to participate in cancer research. To address this disparity, a community based navigator program, Shanti's Margot Murphy Breast Cancer Program (Shanti) initiated a collaboration with UCSF researchers and BreastCancerTrials.org (BCT), a nonprofit clinical trials matching service to explore the potential role of a trusted community-based organization as a source of culturally appropriate education and access to clinical trial information. The pilot study identified guiding principles for development of our Health Research Engagement Intervention (HREI): a) within the context of a trusted relationship, navigators provide education about health research and increase access to information about ongoing breast cancer studies, emphasizing the range of treatment and non-treatment quality-of-life and observational studies; b) provide education and information at a time when the patient is not in the initial crisis of diagnosis; and c) address systems barriers to health research information and participation. This mixed method study includes: 1) capacity-building for the CBO partner (Shanti) and the health research access point (BCT) to reduce system barriers and to conduct evaluations of enhancements to both; 2) a prospective randomized controlled trial (RCT) of the HREI with pre and post surveys; and 3) qualitative evaluation of the trial implementation. The trial's primary outcome is health research information-seeking behavior. Secondary outcomes include health research knowledge, attitudes towards research participation, and health empowerment. To enhance capacity and address system barriers, we added a multilingual (English, Cantonese, Spanish) voicemail system to BCT's helpline, trained staff to use professional healthcare interpreters and enhanced the design of the BCT website for easier navigation by lower health literacy patients. At Shanti, we trained care navigators on health research and the HREI and implemented a Client Tracking Calendar to improve identification of and projections for eligible clients. All Shanti clients who speak English, Cantonese or Spanish and have “low care navigation needs” are eligible (i.e. client may or may not still be undergoing treatment but is no longer in the crisis of initial diagnosis or burdened by treatment protocols). Eighty-six of 150 RCT participants have been enrolled to date and 74 have completed the trial. Interim analyses indicate that participants in the intervention group were more likely than those in the control group to seek health research information. Through sustainable and synergistic capacity building enhancements to two breast cancer organizations, this study is working to increase equity in access to health research information and research participation opportunities for diverse underserved breast cancer patients and survivors. The HREI, if proven effective after completion of the trial, has the long-range potential to reduce disparities in access to health research information and participation opportunities, and thereby to impact progress of breast cancer research. Furthermore, the HREI is a dissemination-ready navigator protocol with the potential for replication in underserved communities nationally. Note: This abstract was not presented at the conference. Citation Format: Alyssa Nickell, Elly Cohen, Susan Stewart, Janice Ka Yan Cheng, Katie Lawlor, Susan Colen, Nancy Burke, Claudia Guerra, Galen Joseph. Engaging Linguistically and Ethnically Diverse Low Income Women in Health Research. [abstract]. In: Proceedings of the Ninth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2016 Sep 25-28; Fort Lauderdale, FL. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2017;26(2 Suppl):Abstract nr A33.

Background: Mobile applications (apps) are increasingly popular in healthcare settings. For low-income populations, however, barriers to utilization exist. To understand the challenges and catalysts for adoption, we evaluated the experiences of underserved patients engaged with a health app. Methods: We recruited patients from a primary care center and a community organization in a mobile health app (Hugo), which provides access to patient portals, health and activity monitoring, and participation in research. A community health worker (CHW) consented participants, downloaded the app on their mobile devices, connected them to portal(s), and instructed in using different features. The CHW provided ongoing tech support. Brief surveys about participants’ interests and concerns using health apps, data access and sharing, and participation in research were developed and cognitively tested, and sent via email or text, according to preference. Responses were archived in Hugo. Monetary incentives were provided at enrollment and three months. Results: Among 108 English-speaking patients and 52 Spanish-speaking patients approached for the study, 82 (75.9%) and 50 (96.2%) were enrolled, respectively. The most common reasons cited by 28 patients for declining were: didn’t own smartphone (14.3%), didn’t have email (21.4%), and not interested (60.7%). Technological challenges to enrollment included: insufficient storage; unfamiliarity with downloading apps; forgotten passwords to email accounts; infrequent email use (resulting in text option for communication); slow/absent WiFi connection. Survey response rates for English-speaking patients ranged from 48.2% (2-week survey) to 86.4% (12-week survey) of 82. Spanish surveys are ongoing and not reported. The majority were interested in monitoring their health through an app (74.4% of 43), connecting devices such as FitBits © and blood pressure cuffs (78.9% of 52), being the owner of their health records (83.6% of 67) having their records in one place (92.4% of 66), and being able to view them on their phones or tablets (100% of 68). Most were somewhat/very concerned about sharing health information with research teams (66.7% of 48), and that information collected through an app would be sold/shared without their permission (85.9% of 47). However, 58.6% (of 70) reported being somewhat/very likely to share health data with a trusted research team. Compared with before the study, 67.4% (of 43) reported feeling more comfortable using health apps, and 76.2% (of 42) reported being more likely to participate in research using apps. Conclusions: Despite several barriers, low-income individuals were feasibly enrolled in a mobile health app with the assistance of a CHW. Participants were interested in using various app features, though had concerns about safety and privacy. The involvement of a CHW facilitated engagement, trust, and participation.

Cardiovascular health research has been dominated by medical and patriarchal paradigms, minimizing a broader perspective of causes of disease. Socioeconomic status as a risk for cardiovascular disease is well established by research, yet these findings have had little influence. Participatory research (PR) that frames mixed method research has potential to bring contextualized clinically relevant findings into program planning and policy-making arenas toward developing meaningful health and social policies relevant to primary prevention. In this article we provide an overview of a PR program that included two quantitative and one qualitative studies and then we discuss lessons learned. The PR process we found was empowering for lone mothers, and transformative for lone mothers and researchers. Further, PR as an approach to research opened spaces in practice and policy-making arenas to raise upstream issues relevant to the health of low income lone mothers. We conclude that while PR is an effective approach to social determinants research, as a time-intensive endeavor, and one that does not easily align with research tradition, researchers must consider the strengths and drawbacks of PR when planning to implement such an approach.

This article details methodological reflections and implications for future work from an innovative, participatory research project that started life during the UK’s first COVID-19 lockdown in early 2020. We reflect on the practice, ethical considerations, and challenges of this (necessarily) online participatory research program, which featured intensive, prolonged collaboration with parents/carers living on a low income within the UK. We discuss the ethical-epistemological foundations of the work, specifically a feminist ethics of care and reciprocity, and present our unique methodological approach, detailing how technology was used to collaborate with a diverse, nation-wide community of parents/carers. We discuss our own and participants’ reflections, including the distinctive complexities and advantages of conducting participatory research online, and also the challenges of upholding an ethics of care in an online, participatory space. We highlight the time intensive nature of this work and argue that, within the academy, more needs to be done both to recognize this and to find ways to create space within it for documenting and learning from innovations in the methodology pursued. We conclude with reflections on the new possibilities that emerge when translating participatory principles to online spaces—learnings with clear relevance for others interested in pursuing these approaches.

This study sought to understand the challenges in the provision of affordable and decent housing for low income earners in the capital city of Zimbabwe, Harare. Various challenges relating to housing provision were identified by the research participants. These related to regulatory barriers, lack of political will and commitment, financial challenges, lack of inter-agency coordination. The study concludes that provision of low-income housing remains a big challenge in Harare, which calls for a multi-sectoral approach to address. The study relied on qualitative methodology. Research participants were drawn from Harare City Council, the private sector non-governmental organisations (NGOs), government officials, and residents.

Although feminist researchers have increasingly called for participatory and action-oriented research, there have been few analyses of the diverse actions that can occur. We theorized the actions considered and implemented in a feminist participatory action research project (FPAR). For three years we collaborated intensively with a group of diverse women on low income who were involved in a FPAR project designed to reduce social isolation and other self-identified health problems. Our data set included tape recordings of 32 one-on-one interviews, 15 research meetings, and extensive fieldnotes. Our findings indicated that actions occurred on both individual and collective levels; some had been enacted prior to the project and were shared to promote ongoing or new actions, while others arose as a consequence of the women’s involvement in the project. Additionally, some actions were implemented and actualized while others, though discussed at length, remained hopes for the future. While the research participants reported the benefits of being involved in such projects, they also spoke of the potential risks. Our findings revealed the complexities of taking action in FPAR and highlight important considerations for others wishing to engage in this type of research.

This article presents the perspective of both non-disabled and developmentally disabled people working together in a research project on poverty and disability. Our study used a participatory action research approach that challenges the norm of exclusion in the research process. Control of the research agenda has been inclusive and shared to varying degrees in accordance with the needs and desires of the members of an advisory committee of developmentally disabled people living with low income. We reflect on our process of working together according to four principles of participatory action research with disabled people. We discuss our successes and challenges enacting these principles in the hopes that future researchers can build upon our experience to be more inclusive of developmentally disabled people in their work.

1 Department of Paediatric Intensive Care, Great North Children's Hospital, The Newcastle upon Tyne Hospitals NHS Foundation Trust, Newcastle upon Tyne, United Kingdom. 2 Translational and Clinical Research Institute, Faculty of Medical Sciences, Newcastle University, Newcastle upon Tyne, United Kingdom. *See also p. 301. Dr. Agbeko's institution received funding from the National Institute for Health and Care Research; she received funding from the British Medical Journal.

Low socioeconomic status (SES) is one of the most common occurring problems today. This kind of adversity may have serious impacts on societies, especially on only children who live with their single parent. The impacts may occur in several aspects such as parenting, child education and behavior and other psychological problems.This study intends tofirst identifiy the difficulties and problems that the only child with a single parent in low income and social status faces and to describe the adaptive processes within this significant adversity. This qualitative research uses a phenomenological approach. The data is collected through in-depth interviews and observations. The research participants are two children, each as an only child ( one female, 14 years old, and one male, 18 years old), not married, and each of them hasa single parent with low socio economic status. The result of this study has shown both participants are adversely affected by their lack of affection and attention from their parents. They are not able to get possessions like their peers do.The limited role the single parent does and the low SES have affected the parenting styles and the attitude and self-control of the children under in difficult situations. Resilience of both participants apparently differs in their adaptation within these significant adversities and in their orientation about education and career. Keyword : Resilience , Only Child , Single Parent , Low Socioeconomic Status

Obtaining informed consent is a great challenge in global health research. There is a need for tools that can screen for and improve potential research participants’ understanding of the research study at the time of recruitment. Limited empirical research has been conducted in low and middle income countries, evaluating informed consent processes in genomics research. We sought to investigate the quality of informed consent obtained in a South African psychiatric genomics study. A Xhosa language version of the University of California, San Diego Brief Assessment of Capacity to Consent Questionnaire (UBACC) was used to screen for capacity to consent and improve understanding through iterative learning in a sample of 528 Xhosa people with schizophrenia and 528 controls. We address two questions: firstly, whether research participants’ understanding of the research study improved through iterative learning; and secondly, what were predictors for better understanding of the research study at the initial screening? During screening 290 (55%) cases and 172 (33%) controls scored below the 14.5 cut-off for acceptable understanding of the research study elements, however after iterative learning only 38 (7%) cases and 13 (2.5%) controls continued to score below this cut-off. Significant variables associated with increased understanding of the consent included the psychiatric nurse recruiter conducting the consent screening, higher participant level of education, and being a control. The UBACC proved an effective tool to improve understanding of research study elements during consent, for both cases and controls. The tool holds utility for complex studies such as those involving genomics, where iterative learning can be used to make significant improvements in understanding of research study elements. The UBACC may be particularly important in groups with severe mental illness and lower education levels. Study recruiters play a significant role in managing the quality of the informed consent process.