Aisha Lofters’s research while affiliated with University of Toronto and other places

Background: Adults with spinal cord injury/dysfunction (SCI/D) are commonly prescribed multiple medications to manage secondary conditions. Significant challenges with managing medications have been highlighted. Adults with SCI/D may interact with multiple healthcare providers and receive fragmented care specific to their medications. Prior research has also emphasized the need for more support with medication self-management among the SCI/D population. Objective: To co-develop a toolkit to assist with medication self-management for adults with SCI/D. Patient and Public Involvement: A working group consisting of adults with SCI/D, caregivers, and healthcare providers was assembled to inform all phases of the study and to contribute to the co-development of material for the toolkit. Methods: A mixed methods study, using a concept mapping approach, was conducted. Concept mapping is a participatory methodology that actively involves participants in data collection and analysis. There are three key steps – brainstorming, sorting and rating, and mapping. Participants included adults with SCI/D, caregivers, and healthcare providers. In the brainstorming sessions, participants generated ideas about content to include in the toolkit and how it should be delivered. The research team synthesized these ideas into a final list for sorting and rating. Participants sorted the final statements into conceptual piles and assigned a name to each pile. Participants rated each statement on a five-point Likert-type scale based on importance and feasibility. A subset of participants took part in the mapping session where a visual map of the data was co-developed. Go-zone plots and pattern match diagrams were created to compare the rating data across participant demographics. Results: Thirty individuals participated in the brainstorming sessions, 35 completed the sorting and rating, and 10 participated in the mapping session. The final map contained eight clusters: (1) information-sharing and communication; (2) healthcare provider interactions and involvement; (3) peer and community connections; (4) supports and services for accessing prescription medications and medication information; (5) information on non-prescription medication and medication supplies; (6) safety and lifestyle considerations; (7) general medication information; and (8) practical information and strategies related to medication-taking. Safety and lifestyle considerations was the cluster rated by participants as the most important and feasible to include in the toolkit. Implications and Next Steps: Promoting medication self-management can assist with integration of care between healthcare providers and across sectors, specifically by actively involving the person with SCI/D in all aspects of their care. In the subsequent phases of this study, the toolkit will be refined through cognitive interviews and input from our working group. A mixed methods pilot evaluation will then be conducted to assess the feasibility, acceptability, and appropriateness of the toolkit, as well medication knowledge, self-efficacy, and quality of life. Conclusions: Given the impact of medication-taking on persons with SCI/D and current lack of support tools, this research presents an innovative solution to address this problem. The active involvement of adults with SCI/D in medication management has the potential to improve their health and well-being, as well as the integration of care.

Introduction: Cancer is the leading cause of death in Canada. Social distancing regulations during the COVID-19 pandemic drove the rapid transitions of health care systems from in-person to virtual cancer care. Virtual care refers to the secure usage of various forms of information and communication technologies such as phone calls, video conferencing, or patient portals to facilitate/optimize the quality of patient care. Virtual care has been shown to be effective for a variety of uses in cancer care, such as pre-treatment discussions and counselling purposes. However, recent research suggests that although virtual cancer care (VCC) can enhance access to health services for some communities, it can also exacerbate health inequities for socially disadvantaged groups such as Racialized communities that may not be able to afford necessary digital technology required for virtual care. Furthermore, older adults face additional challenges when interacting with technology including restricted ability to use technology due to physical or cognitive limitations. Although Black people in Canada are reported to have the lowest rates of access to digital health technologies, it is still unclear how race affects VCC in Canada. It is essential that VCC is delivered in a manner that meets the needs of all communities and does not exacerbate inequities between the socially advantaged and socially disadvantaged communities. The objective of this study was to better understand the VCC experience of older Black patients, their caregivers and healthcare providers. Methods: Qualitative studies are appropriate to capture the lived experiences of individuals/communities of a social phenomena such as VCC. We used a theory-informed thematic analysis, using data collected from six focus groups (N= 55 participants: 40 patients and caregivers, and 15 healthcare providers) conducted across ten Canadian provinces. Qualitative data analysis was facilitated by the Nvivo 11 software. Data was coded using the Patient Centred Care model and the Synergies of Oppression framework guided interpretation. Results: The experiences of older Black patients, their caregivers and healthcare providers in using VCC were captured in five overarching themes: Patient at the intersection of multiple systems of oppression; Shifting role of caregivers; Giving choice and choosing based on the purpose of care; Opportunity to meet health care needs through digital access; Communicating effectively through virtual care. Eight barriers to optimal VCC such as limited digital literacy, linguistic barriers in traditional African/Caribbean languages, and culturally mediated views of patients were identified. We also identified six facilitators to optimal VCC such as community-based cancer support groups, caregivers support and key features of digital technologies. Conclusion: This study suggests that efforts to improve the quality of VCC necessitates a multipronged approach that addresses barriers while leveraging culturally sensitive guides to VCC. Initiative to redesign VCC programs tailored to the needs of socially disadvantaged communities like older Black patients may improve the virtual care experience for the whole population. Public policies and practices that address issues like availability of internet in remote areas, resources to support linguistic barriers or culturally sensitive training are important in responding to the complexity of access to VCC

Background: Persons with mobility limitations generally take multiple medications to manage their condition and other health complications. There are limited assessment tools measuring the experiences with medications and their impacts on everyday life. Understanding what matters to persons about experiences with medications will inform person-centred clinical care, integrated care, ongoing monitoring, and overall quality of care. Objective: The objective of this study was to identify what matters to Canadian adults with mobility limitations regarding their experiences with medications. Methods: We conducted a concept mapping study which is a participatory, mixed methods approach. It involves six steps: preparation, brainstorming, sorting and rating, analysis, mapping and interpretation, and utilization. Participants were required to: be 18 years of age or older, live in Canada, live in the community, speak and read English or French, have a mobility limitation, and take at least one medication recommended by a prescriber in the preceding three months. During the brainstorming sessions, participants generated statements in response to the focal prompt: what matters to you about medications in your everyday life? In the sorting task, participants created piles of statements based on their conceptual similarity. In the rating task, participants rated each statement on two dimensions – importance and realistic. In the mapping session, a subset of participants created visual maps of the data. Results: Participants generated 694 statements during the brainstorming sessions, which were synthesized into a final list of 80 statements. The final map contained ten clusters that aligned with what mattered to participants about their medications in everyday life: (1) medication-related financial considerations and support; (2) pharmacy-related services and supports; (3) access to medications and medication-related supports; (4) acceptance and stigma around medication use; (5) ability and ease of taking medications; (6) shared decision-making and access to medication-related research and information; (7) medication effectiveness, side effects and risks; (8) knowledge, self-awareness and empowerment; (9) accessibility of healthcare providers; and (10) communication and relationships with healthcare providers. Medication-related financial considerations and support was the cluster rated highest on importance, but lowest on realistic. Implications and Next Steps: This research has identified key items and domains related to medication-related experiences that will inform improved healthcare delivery and outcomes for Canadian adults who take medications. In the next steps of this research, we will engage with medication prescribers, administrators, decision-makers, and patients to better understand implementation considerations around patient-reported experience and/or outcome measures, prior to the development of a measure to be used in practice. Conclusions: There is currently a lack of patient-reported experiences and/or outcome measures that apply a comprehensive assessment on the experiences with or impact of medications on everyday life. Obtaining a better understanding of and individuals’ experiences with medications and how they may impact their quality of life will help inform the co-development and implementation of an experience measure specific to medications.

Background: Increasing evidence shows that the COVID-19 pandemic has disproportionately impacted certain populations, particularly those facing structural marginalization, such as immigrants and refugees. Additionally, research highlights that structurally marginalized populations living with chronic conditions, such as cancer and/or mental health and addiction (MH&A) disorders, are more vulnerable to the adverse effects of COVID-19. These individuals face higher susceptibility to infection and worse health outcomes, including increased rates of hospitalization, severe illness, and death. To better understand the challenges faced by people living at the intersection of social and clinical disadvantages, we organized a series of Think Tank sessions to engage stakeholders in exploring barriers and identifying community-based solutions for immigrants and refugees living with cancer and/or MH&A disorders during the current and future pandemics. Objectives: Our main objectives were to gauge how earlier findings resonated with stakeholders, to identify any gaps in the work, and to co-develop actionable solutions to safeguard health and well-being during COVID-19 and future crises. Methods: Two virtual Think Tank sessions were held in September 2023 as integrative knowledge exchange forums. The Cancer Think Tank was attended by 40 participants, while the MH&A disorders Think Tank included 41 participants. Each group comprised immigrants and refugees living with or affected by cancer (in the Cancer Think Tank) or MH&A disorders (in the MH&A disorders Think Tank), alongside service providers, policymakers, and researchers from Ontario. This paper presents the key discussions and outcomes of these sessions. Results: Participants identified and prioritized actionable strategies during the Think Tank sessions. In the Cancer Think Tank, participants emphasized the importance of leveraging foreign-trained healthcare providers to address workforce shortages, creating clinical health ambassadors to bridge gaps in care, and connecting immigrants with healthcare providers immediately upon their arrival in Canada. In the MH&A disorders Think Tank, participants highlighted the need to remove silos by fostering intersectoral collaboration, empowering communities and building capacity to support mental health, and moving away from one-size-fits-all approaches to develop tailored interventions that better address diverse needs. Conclusions: The Think Tank sessions enhanced our understanding of how the COVID-19 pandemic has impacted immigrants and refugees living with cancer and/or MH&A disorders. The insights gained informed a series of actionable recommendations to address the unique needs of these populations during the current pandemic and in future public health crises.

Introduction Deliberative dialogue (DD) is a participatory research methodology wherein stakeholders with diverse backgrounds, experiences and interests come together to engage in discussions to build consensus for collaborative decision-making. The methodology is increasingly used in health promotion research to develop equitable solutions to complex problems. A review of PubMed-indexed papers alone showed a 9% increase in published DD studies in 2024 from prior years (2020–2023), with most focusing on health promotion and service co-design. Given the increasing emphasis on multistakeholder engagement in research, there is a need to understand how DD has been used as a methodological tool for the co-design, modifications, implementation, evaluation, and knowledge dissemination of health promotion interventions. This scoping study aims to comprehensively understand the application of DD in intervention design to provide a framework to ensure DD is employed with methodological rigour. It will offer valuable insights into how its systematic use can improve the credibility, validity, and trustworthiness of study findings while respecting the principles of participation and knowledge co-production. Methods This scoping review follows the Arksey & O’Malley framework. The Arksey & O’Malley framework is designed to map the key concepts, types of evidence, and gaps in research, consisting of five stages: identifying research questions, selecting relevant studies, screening, data charting, and summarizing results. The research team includes decision-makers, researchers, healthcare providers involved in the co-design, co-implementation and co-evaluation of health-promoting interventions, and two patient partners with previous experience in collaborative decision-making. Searches will be performed across multiple databases such as OVID Medline, PsycINFO, PubMed, CINAHL, and Scopus databases. Studies will undergo abstract and full-text screening using Covidence. Covidence is an online platform designed to simplify the process of creating systematic and other in-depth literature reviews (including scoping reviews, rapid reviews, and meta-syntheses), abstract, full-text screening, and extraction of study details, results, and references. A data extraction template has been co-developed building on Guidance for Reporting Involvement of Patient and Public (GRIPP2), which ensures comprehensive reporting of patient and public involvement in research, and the Consolidated Standards of Reporting Trials (CONSORT) checklist facilitates the consistent reporting of methodologies. This data will allow us to understand how DD is used to co-design health interventions. Data extraction will be performed by one reviewer and verified by a second reviewer for consistency. It will then be synthesized to map how DD has been used across various stages of health promotion interventions. Ethics and dissemination This scoping review does not require ethics approval as it analyzes data from existing research articles. The results will inform the development of guidelines to support methodologically rigorous DD regarding the co-design, co-implementation, and co-evaluation of health-promoting interventions.