Engaging Community Health Workers (CHWs) in Africa: Lessons from the Canadian Red Cross supported programs.

Universal Health Coverage (UHC) will not be achieved if health care worker shortages, estimated to increase to 18 million by 2030, are not addressed rapidly. Community-based health systems, which pivot to effective engagement of community health workers (CHW), may have an essential role in linking communities with health care facilities and reducing unmet health services needs caused by these shortages. The Canadian Red Cross (CRC) has partnered with different National Red Cross/Red Crescent Societies and Ministries of Health in Africa in the implementation of programs where CHWs contributed to the provision of various health services. This study reports on key findings (i.e., beneficiaries reached, CHWs engaged, programs implemented, intervention outcomes) and lessons learned from CRC supported CHW programs in Africa over the last 15 years (2007-2022). Qualitative methodology was employed to conduct document analysis on 17 sets of reports from each CRC-supported community health worker project in Africa over the past 15 years. Focus was on identifying challenges, facilitators, and lessons learned. CRC supported projects have trained over 9000 CHWs, benefiting nearly 7.5 million people across Africa. Key success factors include adaptability and agility in programming and project management, and considering contextual factors (political, social, and cultural systems). Investing in essential training for CHWs, staff, and volunteers is crucial, alongside employing an evidence-based approach to inform all aspects of programming and implementation. Additionally, projects prioritizing protection, gender and inclusion (PGI) while leveraging existing community structures and partnerships important for successful implementation. Despite challenges (i.e., weak health systems, lack of political commitment, insufficient funding, inadequate training) CHWs are recognized as crucial in promoting community-based health, improving access to care, addressing disparities, and contributing to achieving (UHC). Their unique position within communities enables them to provide culturally appropriate and localized primary health care- particularly in remote, resource limited and poverty-stricken regions.

A rapid review of community engagement and informed consent processes for adaptive platform trials and alternative design trials for public health emergencies.

Background : Public Health Emergencies (PHE) demand expeditious research responses to evaluate new or repurposed therapies and prevention strategies. Alternative Design Trials (ADTs) and Adaptive Platform Trials (APTs) have enabled efficient large-scale testing of biomedical interventions during recent PHEs. Design features of these trials may have implications for engagement and/or informed consent processes. We aimed to rapidly review evidence on engagement and informed consent for ADTs and APTs during PHE to consider what (if any) recommendations can inform practice. Method : In 2022, we searched 8 prominent databases for relevant peer reviewed publications and guidelines for ADTs/APTs in PHE contexts. Articles were selected based on pre-identified inclusion and exclusion criteria. We reviewed protocols and informed consent documents for a sample of large platform trials and consulted with key informants from ADTs/APT trial teams. Data were extracted and summarised using narrative synthesis. Results : Of the 49 articles included, 10 were guidance documents, 14 discussed engagement, 10 discussed informed consent, and 15 discussed both. Included articles addressed ADTs delivered during the West African Ebola epidemic and APTs delivered during COVID-19. PHE clinical research guidance documents highlight the value of ADTs/APTs and the importance of community engagement, but do not provide practice-specific guidance for engagement or informed consent. Engagement and consent practice for ADTs conducted during the West African Ebola epidemic have been well-documented. For COVID-19, engagement and consent practice was described for APTs primarily delivered in high income countries with well-developed health service structures. A key consideration is strong communication of the complexity of trial design in clear, accessible ways. Conclusion: We highlight key considerations for best practice in community engagement and informed consent relevant to ADTs and APTs for PHEs which may helpfully be included in future guidance. Protocol: The review protocol is published online at Prospero on 15/06/2022: registration number CRD42022334170.

Engaging patients, families and professionals at the bedside using whiteboards.

Health-care systems around the world are striving to be patient-centered, and there is growing evidence that engaging patients and families in their care, as well as in efforts to redesign services, contributes to improved outcomes and experiences for patients and providers. This patient-oriented care movement includes efforts to improve the quality of information and communication between health-care professionals and patients as well as families and caregivers. Whiteboards have emerged as a best practice in hospitals to promote engagement and improve information and communication, yet with limited empirical evidence regarding their value to patients, families, or interprofessional teams. We introduced whiteboards on an acute medical unit at a community hospital and conducted an evaluation using a pre-post design collecting both qualitative and quantitative data. Baseline and post-implementation data were collected via qualitative interviews with patients/family and providers and using the Canadian Patient Experience Survey; focus groups were held with staff and members of the care team. Qualitative results highlighted improvements in communication between the care team and patients as well as family members. Implications for practice include attention to patient/family empowerment and safety, adherence to guidance for good communication, and support for regular training and education in the use of communication tools for members of the interprofessional team.

Trainee-led research using an integrated knowledge translation or other research partnership approaches: a scoping reviews.

BACKGROUND: There are increasing expectations for researchers and knowledge users in the health system to use a research partnership approach, such as integrated knowledge translation, to increase the relevance and use of research findings in health practice, programmes and policies. However, little is known about how health research trainees engage in research partnership approaches such as IKT. In response, the purpose of this scoping review was to map and characterize the evidence related to using an IKT or other research partnership approach from the perspective of health research trainees in thesis and/or postdoctoral work. METHODS: We conducted this scoping review following the Joanna Briggs Institute methodology and Arksey and O'Malley's framework. We searched the following databases in June 2020: MEDLINE, Embase, CINAHL and PsycINFO. We also searched sources of unpublished studies and grey literature. We reported our findings in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews. RESULTS: We included 74 records that described trainees' experiences using an IKT or other research partnership approach to health research. The majority of studies involved collaboration with knowledge users in the research question development, recruitment and data collection stages of the research process. Intersecting barriers to IKT or other research partnerships at the individual, interpersonal and organizational levels were reported, including lack of skills in partnership research, competing priorities and trainees' "outsider" status. We also identified studies that evaluated their IKT approach and reported impacts on partnership formation, such as valuing different perspectives, and enhanced relevance of research. CONCLUSION: Our review provides insights for trainees interested in IKT or other research partnership approaches and offers guidance on how to apply an IKT approach to their research. The review findings can serve as a basis for future reviews and primary research focused on IKT principles, strategies and evaluation. The findings can also inform IKT training efforts such as guideline development and academic programme development.

"Caregiving is like on the job training but nobody has the manual": Canadian caregivers' perceptions of their roles within the healthcare system.

BACKGROUND: Stepping into the role of an unpaid caregiver to offer help is often considered a natural expectation of family members or friends. In Canada, such contributions are substantial in terms of healthcare provision but this comes at a considerable cost to the caregivers in both health and economic terms. METHODS: In this study, we conducted a secondary analysis of a collection of qualitative interviews with 39 caregivers of people with chronic physical illness to assess how they described their particular roles in caring for a loved one. We used a model of caregiving roles, originally proposed by Twigg in 1989, as a guide for our analysis, which specified three predominant roles for caregivers - as a resource, as a co-worker, and as a co-client. RESULTS: The caregivers in this collection spoke about their roles in ways that aligned well with these roles, but they also described tasks and activities that fit best with a fourth role of 'care-coordinator', which required that they assume an oversight role in coordinating care across institutions, care providers and often advocate for care in line with their expectations. For each of these types of roles, we have highlighted the limitations and challenges they described in their interviews. CONCLUSIONS: We argue that a deeper understanding of the different roles that caregivers assume, as well as their challenges, can contribute to the design and implementation of policies and services that would support their contributions and choices as integral members of the care team. We provide some examples of system-level policies and programs from different jurisdictions developed in recognition of the need to sustain caregivers in their role and respond to such limitations.

Using a Mobile App-Based Video Recommender System of Patient Narratives to Prepare Women for Breast Cancer Surgery: Development and Usability Study Informed by Qualitative Data.

BACKGROUND: Women diagnosed with breast cancer are often bombarded with information. Such information overload can lead to misunderstandings and hamper women's capacity for making informed decisions about their care. For women with breast cancer, this uncertainty is particularly severe in the period before surgery. Personalized narratives about others' experiences can help patients better understand the disease course, the quality and type of care to be expected, the clinical decision-making processes, and the strategies for coping. Existing resources and eHealth apps rarely include experiential information, and no tools exist that tailor information for individual preferences and needs-offering the right information at the right time and in the right format. Combining high-quality experiential evidence with novel technical approaches may contribute to patient-centered solutions in this area. OBJECTIVE: This study aims to design and seek preliminary feedback on a mobile app that will improve information access about surgery for patients with breast cancer, by drawing on a qualitative collection of personal narratives from a diverse sample of Canadian women and using video and audio recordings or audio recordings from the Canadian Health Experiences Research Network. METHODS: In a previous study, we conducted in-depth interviews with 35 Canadian women and used video and audio recordings or audio recordings to collect stories about the lived experiences of breast cancer. The participants highlighted the need for more specific information between diagnosis and surgery that was relevant to their personal situations and preferences. They also wanted to learn from other women's experiences. We worked with patients, clinicians, and informatics experts to develop a mobile app that provides access to tailored experiential information relevant to women's personal situations and preferences. We completed focus groups and qualitative interviews, conducted a further analysis of the original qualitative data, designed novel software using artificial intelligence, and sought preliminary feedback from users on a new app via focus groups and a survey. RESULTS: The secondary analysis of the breast cancer narratives revealed key themes and their interconnections relevant to the experience of surgery, including preparation, treatment decisions, aftercare, reconstruction, prostheses, lumpectomy and mastectomy, and complications. These themes informed the development of the structure and content of the app. We developed a recommender system within the app by using content matching (user and speaker profiles and user interests and video content) and collaborative filtering to identify clips marked as relevant by the user and by similar users. A 2-minute animated introductory video for users was developed. Pilot testing revealed generally positive responses regarding the content and value of this type of e-tool. CONCLUSIONS: Developing reliable, evidence-based tools and apps that are based on diverse collections of people's experiences of illness offers a novel approach to help manage the plethora of information that women face after a diagnosis of breast cancer.

Using an integrated knowledge translation or other research partnership approach in trainee-led research: a scoping review protocol.

INTRODUCTION: Collaborative research approaches, such as co-production, co-design, engaged scholarship and integrated knowledge translation (IKT), aim to bridge the evidence to practice and policy gap. There are multiple benefits of collaborative research approaches, but studies report many challenges with establishing and maintaining research partnerships. Researchers often do not have the opportunity to learn how to build collaborative relationships, and most graduate students do not receive formal training in research partnerships. We are unlikely to make meaningful progress in strengthening graduate and postgraduate training on working collaboratively with the health system until we have a better understanding of how students are currently engaging in research partnership approaches. In response, this scoping review aims to map and characterise the evidence related to using an IKT or other research partnership approach from the perspective of health research trainees. METHODS AND ANALYSIS: We will employ methods described by the Joanna Briggs Institute and Arksey and O'Malley's framework for conducting scoping reviews. The reporting will follow the Preferred Reporting Items for Systematic Reviews and Meta-Analysis extension for scoping reviews checklist. We will include both published and unpublished grey literature and search the following databases: MEDLINE, Embase, CINAHL, PsycINFO, ProQuest Dissertations & Theses Global databases, Google Scholar and websites from professional bodies and other organisations. Two reviewers will independently screen the articles and extract data using a standardised data collection form. We will narratively describe quantitative data and conduct a thematic analysis of qualitative data. We will map the IKT and other research partnership activities onto the Knowledge to Action cycle and IAP2 Levels of Engagement Framework. ETHICS AND DISSEMINATION: No ethical approval is required for this study. We will share the results in a peer-reviewed, open access publication, conference presentation and stakeholder communications.

Dread and solace: Talking about perinatal mental health.

Perinatal mental health issues are a global public health challenge. Worldwide, it is estimated that 10% of pregnant women, and 13% of women who have just given birth, experience a mental disorder. Yet, for many reasons - including stigma, limited access to services, patients' lack of awareness about symptoms, and inadequate professional intervention - actual rates of clinical and subclinical perinatal mental health issues are likely higher. Studies have explored experiences such as postpartum depression, but few involve a wider-ranging exploration of a variety of self-reported perinatal mental health issues through personal narrative. We conducted 21 narrative interviews with women, in two Canadian provinces, about their experiences of perinatal mental health issues. Our aim was to deepen understanding of how individual and cultural narratives of motherhood and perinatal mental health can be sources of shame, guilt, and suffering, but also spaces for healing and recovery. We identified four predominant themes in women's narrative: feeling like a failed mother; societal silencing of negative experiences of motherhood; coming to terms with a new sense of self; and finding solace in shared experiences. These findings are consistent with other studies that highlight the personal challenges associated with perinatal mental health issues, particularly the dread of facing societal norms of the 'good mother'. We also highlight the positive potential for healing and self-care through sharing experiences, and the power of narratives to help shape feelings of self-worth and a new identity. This study adheres to the expectations for conducting and reporting qualitative research.

How to know what to know: Information challenges for women in the diagnostic phase of breast cancer.

OBJECTIVE: To explore how women describe efforts to seek, appraise and interpret information during the diagnostic phase of her breast cancer care. METHODS: Qualitative interviews with 35 women with breast cancer across Canada, using audio/video recording. Thematic analysis was used to identify topics important to participants (original results published: www.healthexperiences.ca). Secondary analysis of transcripts to identify how women described information flow, content, and management strategies. RESULTS: Women adopt different strategies to optimize access to information, while acknowledging the negative effects of information overload and lack of relevant information. They propose small steps towards gathering and managing information, and to focus initially on understanding their illness. CONCLUSION: Different strategies can help to ensure that women have the right information, in the right format, at the right time. Some of these strategies include developing guidance on how to 'handle' information, helping healthcare professionals identify patient's information preferences, improving the availability, quality and access to experiential information, and facilitating acces to electronic information that can tailor information. Further research to understand how women handle information can inform strategies to help newly-diagnosed patients navigate available information. PRACTICE IMPLICATIONS: Healthcare professionals can work in partnership with patients to tailor reliable information to support informed decision-making.

Key issues for participatory research in the design and implementation of humanitarian assistance: a scoping review.

BACKGROUND: Participatory approaches that engage affected populations are increasingly applied in humanitarian health programs in concert with emerging accountability frameworks and the rapid growth of research in these settings. Participatory initiatives within this domain appear to be largely adopted at an operational level and are infrequently reported as a component of research efforts. Yet the evidence of the benefits of research involving community members is growing worldwide. This is the first review of participatory research (PR) in humanitarian settings. OBJECTIVES: This study sought to understand the extent to which PR values and practices have been adopted in humanitarian health programs and to explore key issues in applying PR in this context. METHODS: This scoping review was based on the approach developed by Arksey and O'Malley. The search for relevant peer-reviewed articles included scientific databases, a humanitarian database, targeted journals and online resources published since 2009. Eleven articles were retrieved and reviewed to identify practices and key issues related to conducting PR in humanitarian settings. RESULTS: Four key themes were identified: building trust with local research stakeholders and participants; the importance of contextual understanding; implications of collaborating with affected populations in PR, and neutrality of researchers and Non-Governmental Organizations (NGOs). Study teams considered PR as a valued approach where there was mistrust or a need for contextualized understanding. The studies described how adaptations made during the study optimized collaboration with affected populations and how the presence of NGOs influenced the approach and results of PR. CONCLUSIONS: One of the most important contributions of humanitarian health programs is to develop 'medical practices that are better adapted to the living conditions and priorities of patients who are generally ignored'. Participatory approaches, such as PR, support the development of health-related practices that are more relevant and sustainable for affected populations.

Engaging caregivers: exploring perspectives on web-based health information.

Background: Informal or family caregivers are important contributors to health and health care and require support to sustain their role and address particular challenges. An experience-based health website may be an accessible, effective way to offer caregivers peer support and ultimately better equip them to care for themselves and their loved ones. Objectives: This study investigated how caregivers access and use information on the Internet about caregiving and their perspectives on the design and features of a new personal health experiences (PHEx) website. Methods: This was a qualitative descriptive study that involved three focus groups of caregivers for a total of 16 participants in a university-affiliated hospital in Quebec. Thematic analysis was used with transcriptions of recorded sessions. Results: With respect to how participants accessed and used health information, three themes emerged: searching for and choosing health websites, empowerment through the use of online health information, and concerns about health information on the Internet. In terms of their views on a health experiences website, the two main themes were: factors important for first impressions and perceived needs and expectations. Conclusion: Caregivers accessed and chose health information in a similar manner to other people but still offered additional insights regarding online health information retrieval, usage, and other perspectives, which will be helpful for future web-based initiatives that aim to provide support to caregivers.