Engaging people with lived experiences on community advisory boards in community-based participatory research: a scoping review protocol.

INTRODUCTION: Community-based participatory research (CBPR) is a collaborative research approach that equally engages researchers and community stakeholders throughout all steps of the research process to facilitate social change and increase research relevance. Community advisory boards (CABs) are a CBPR tool in which individuals with lived experience and community organisations are integrated into the research process and ensure the work aligns with community priorities. We seek to (1) explore the best practices for the recruitment and engagement of people with lived experiences on CABs and (2) identify the scope of literature on minimising power dynamics between organisations and community members with lived experience who work on CABs together. METHODS AND ANALYSIS: This scoping review will follow the Arksey and O'Malley methodological framework, informed by Levac et al, and will be reported using a PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) diagram. Detailed and robust search strategies have been developed for Embase, Medline and PsychINFO. Grey literature references and reference lists of included articles published between 1 January 1990 and 30 March 2023 will be considered. Two reviewers will independently screen references in two successive stages of title/abstract and full-text screening. Conflicts will be decided by consensus or a third reviewer. Thematic analysis will be applied in three phases: open coding, axial coding and abstraction. Extracted data will be recorded and presented in a tabular format and/or graphical summaries, with a descriptive overview discussing how the research findings relate to the research questions. At this time, a preliminary search of peer-reviewed and grey literature has been conducted. Search results for peer-reviewed literature have been uploaded to Covidence for review and appraisal for relevance. ETHICS AND DISSEMINATION: Formal ethics approval is not required for this review. Review findings will inform ongoing and future CBPR community advisory board dynamics. REGISTRATION: The protocol has been registered prospectively on the Open Science Framework (https://doi.org/10.17605/OSF.IO/QF5D3).

Family and community resilience: a Photovoice study.

BACKGROUND: Adverse childhood experiences (ACEs), in combination with adverse community environments, can result in traumatic stress reactions, increasing a person's risk for chronic physical and mental health conditions. Family resilience refers to the ability of families to withstand and rebound from adversity; it involves coping with disruptions as well as positive growth in the face of sudden or challenging life events, trauma, or adversities. This study aimed to identify factors contributing to family and community resilience from the perspective of families who self-identified as having a history of adversity and being resilient during the COVID-19 pandemic. METHODS: This study used Photovoice, a visual participatory research method which asks participants to take photographs to illustrate their responses to a research question. Participants consisted of a maximum variation sample of families who demonstrated family level resilience in the context of the pair of ACEs during the COVID-19 pandemic. Family members were asked to collect approximately five images or videos that illustrated the facilitators and barriers to well-being for their family in their community. Semi-structured in-depth interviews were conducted using the SHOWeD framework to allow participants to share and elucidate the meaning of their photos. Using thematic analysis, two researchers then independently completed line-by-line coding of interview transcripts before collaborating to develop consensus regarding key themes and interpretations. RESULTS: Nine families were enrolled in the study. We identified five main themes that enhanced family resilience: (1) social support networks; (2) factors fostering children's development; (3) access and connection to nature; (4) having a space of one's own; and (5) access to social services and community resources. CONCLUSIONS: In the context of additional stresses related to the COVID-19 pandemic, resilient behaviours and strategies for families were identified. The creation or development of networks of intra- and inter-community bonds; the promotion of accessible parenting, housing, and other social services; and the conservation and expansion of natural environments may support resilience and health.

Exploring Patient Advisors' Perceptions of Virtual Care Across Canada: Qualitative Phenomenological Study.

BACKGROUND: While virtual care services existed prior to the emergence of COVID-19, the pandemic catalyzed a rapid transition from in-person to virtual care service delivery across the Canadian health care system. Virtual care includes synchronous or asynchronous delivery of health care services through video visits, telephone visits, or secure messaging. Patient advisors are people with patient and caregiving experiences who collaborate within the health care system to share insights and experiences in order to improve health care. OBJECTIVE: This study aimed to understand patient advisors' perceptions related to virtual care and potential impacts on health care quality. METHODS: We adopted a phenomenological approach, whereby we interviewed 20 participants who were patient advisors across Canada using a semistructured interview protocol. The protocol was developed by content experts and medical education researchers. The interviews were audio-recorded, transcribed verbatim, and analyzed thematically. Data collection stopped once thematic saturation was reached. The study was conducted at Queen's University, Kingston, Ontario. We recruited 20 participants from 5 Canadian provinces (17 female participants and 3 male participants). RESULTS: Six themes were identified: (1) characteristics of effective health care, (2) experiences with virtual care, (3) modality preferences, (4) involvement of others, (5) risks associated with virtual care encounters, and (6) vulnerable populations. Participants reported that high-quality health care included building relationships and treating patients holistically. In general, participants described positive experiences with virtual care during the pandemic, including greater efficiency, increased accessibility, and that virtual care was less stressful and more patient centered. Participants comparing virtual care with in-person care reported that time, scheduling, and content of interactions were similar across modalities. However, participants also shared the perception that certain modalities were more appropriate for specific clinical encounters (eg, prescription renewals and follow-up appointments). Perspectives related to the involvement of family members and medical trainees were positive. Potential risks included miscommunication, privacy concerns, and inaccurate patient assessments. All participants agreed that stakeholders should be proactive in applying strategies to support vulnerable patients. Participants also recommended education for patients and providers to improve virtual care delivery. CONCLUSIONS: Participant-reported experiences of virtual care encounters were relatively positive. Future work could focus on delivering training and resources for providers and patients. While initial experiences are positive, there is a need for ongoing stakeholder engagement and evaluation to improve patient and caregiver experiences with virtual care.

Family physicians partnering for system change: a multiple-case study of Ontario Health Teams in development.

BACKGROUND: The Ontario Health Team (OHT) model is a form of integrated care that seeks to provide coordinated delivery of care to communities across Ontario, Canada. Primary care is positioned at the heart of the OHT model, yet physician participation and representation has been severely challenged at planning and governance tables. The purpose of this multiple case study is to examine (1) processes and structures to enable family physician participation in OHTs and (2) describe challenges to family physician participation. METHODS: We chose a qualitative, exploratory multiple-case study approach following Yin's design and methods. The study took place between June and December 2021.We conducted semi-structured interviews with OHT stakeholders in four communities and carried out an analysis of internal and external documents to contextualize interview findings. Thematic analysis was applied within case and between cases. RESULTS: Four OHTs participated in this study with thirty-nine participants (17 family physicians; 22 other stakeholders). Over 60 documents were analyzed. Within-case analysis found that structures and processes should be formalized and established to facilitate physician participation. Skepticism, burnout, heavy workload, and the COVID-19 pandemic were challenges to participation. Between-case analysis found that participation varied. Face-to-face communication processes were favoured in all cases and history of collaboration facilitated relationship-building. All cases faced similar challenges to physician participation despite regional differences. CONCLUSIONS: The implementation of OHTs demonstrates that integrated care models can address critical health system issues through a collective approach. Physician participation is vital to the development of an OHT, however, recognition of their challenges (skepticism, burnout, COVID-19 pandemic) to participating must be acknowledged first. To ensure that models like OHTs thrive, physicians must be meaningfully engaged in various aspects and levels of governance and delivery.

The virtual family conference in stroke rehabilitation: Education, preparation, and transition planning.

OBJECTIVE: To examine the virtual family conference as an educational, preparatory, and transition planning intervention in stroke rehabilitation. DESIGN: Observational-cross-sectional study. SETTING: Inpatient stroke rehabilitation. SUBJECTS: Eighty-seven carers, participating in 48 conferences, were evaluated. INTERVENTIONS: The virtual family conference, involving the patient, carer(s), and interdisciplinary rehabilitation team, completed prior to community transition. The conference protocol and framework, consisting of nine primary themes and additional sub-themes, are outlined. Teleconferencing was the utilized virtual modality. MAIN MEASURES: Carers were assessed via questionnaires regarding pre- and post-conference rated: (1) stroke-related knowledge, (2) satisfaction with information provision, and (3) confidence, preparedness, and stress associated with community transition; by use of the Stroke Knowledge and Community Transition Preparedness Questionnaire, Mant et al. Information Satisfaction Questionnaire, and Kingston Caregiver Stress Scale. RESULTS: Significant improvement in post-conference carer-rating was noted for knowledge, pertaining to stroke nature/impairments, stroke management/prevention, functional status, and community services. Significant gains were demonstrated in post-conference satisfaction with information provided regarding stroke and discharge planning, across all assessed topics. There was also a significant increase in carer-reported confidence and preparedness for the community transition as well as a significant reduction in self-perceived stress for elements of the caregiving role. Organization of community follow-up care was consistently enabled within the proposed framework. CONCLUSIONS: The virtual family conference intervention demonstrated efficacy in facilitating carer education and preparation, along with discharge planning prior to community transition from stroke rehabilitation. Thus, illustrating potential benefits of family conferences and feasibility of their virtual application in stroke rehabilitative care.

Patient and caregiver perspectives on virtual care: a patient-oriented qualitative study.

BACKGROUND: Since the onset of the COVID-19 pandemic, virtual care solutions have been rapidly adopted across the country to provide safe, quality care to diverse patient populations. The objective of this qualitative case study was to understand patient and caregiver experiences of virtual care to identify barriers and gather suggestions to address them. METHODS: In this patient-oriented project, we sought to understand gaps in virtual care experienced by patients and caregivers, using virtual focus groups. With the assistance of a patient research liaison, we engaged 2 patient partners as full partners; they participated in study conception, data collection, data analysis and knowledge translation. Recruitment was done through email by disseminating the study poster to 30 community organizations and health units in Ontario and British Columbia. We conducted a constructivist, qualitative study guided by grounded theory methodology. One researcher employed in-vivo coding, followed by axial coding with focus group participants, followed by selective coding with the study team. The study took place from November to December 2020. RESULTS: We conducted 6 focus groups with 13 patients and 5 caregivers. The analysis resulted in 6 major themes and 17 minor themes. Key findings showed that barriers related to access to technology and Internet, language and cultural differences were challenges to virtual care. Participants identified special considerations surrounding caregiver and family involvement; privacy, consent and confidentiality; and the patient-physician relationship. Participants suggested that technology and the Internet be universally accessible and that virtual care modalities be integrated (e.g., consolidated patient portal) to improve virtual care. INTERPRETATION: There are multiple patient-identified barriers to accessing virtual care in Canada; patients can provide insights into ways to address these barriers. Future research should include robust patient engagement to explore ways to address these challenges and barriers to ensure that virtual care can be equitable, accessible and safe for all users. PLAIN LANGUAGE SUMMARY: Although virtual care has been rapidly adopted and scaled up in health care institutions across the country, few improvements informed by patient and caregiver experiences have been made. Driven by concerns expressed by patient partners, our study team undertook a patient-partnered qualitative study to understand the barriers of virtual care from the perspectives and experiences of patients and caregivers. Our study team created the interview guide drawing from our previous patient-oriented qualitative studies and designed an orientation package to provide resources related to the focus groups and to introduce participants to the study team. Drawing from local health teams, clinics and patient advisory groups, the study team recruited 13 patients and 5 caregivers to participate in 6 focus group interviews. An analysis based on grounded theory was undertaken, with participation from both the study team and participants. Lack of access to technology or Internet and language barriers were determined to be the primary challenges in virtual care. Special considerations to caregiver and family involvement, privacy and confidentiality, as well as the patient-physician relationship were considered priorities to improving access to virtual care. Participants offered recommendations and potential solutions to address barriers and challenges in virtual care, which can serve to encourage large-scale policy and programmatic changes in patient-centred ways.

Virtual Care Access and Health Equity during the COVID-19 Pandemic, a qualitative study of patients with chronic diseases from Canada.

OBJECTIVES: The COVID-19 pandemic has led to the widespread uptake of virtual care in Canada; however, virtual care may also create new barriers to health care. The purpose of this paper was to explore patient perceptions and concerns around virtual care access. METHODS: Between February and April 2020, we conducted semi-structured interviews with participants from four chronic disease clinics (stroke, epilepsy, amyotrophic lateral sclerosis, obstetrics medicine) in a mid-sized academic hospital in Southern Ontario, Canada. Consecutive sampling was done by including the patients receiving virtual care in those months. Caregivers were invited to participate in the event that patients were unable to participate in the interview. Thematic analysis was employed to identify overarching themes, and codes were reviewed and refined using a consensus process. RESULTS: We interviewed 31 participants (27 patients, four caregivers) that had taken part in virtual care. Our findings suggested that the COVID-19 pandemic served to isolate participants and had negatively impacted their access to health care. However, virtual care did provide a safe avenue for patients to receive care and served as a reassuring option during the pandemic. Low technological literacy and access were identified as barriers to virtual care. Greater awareness and patient engagement is needed in future research to improve access. CONCLUSION: Certain populations can be disproportionately affected by differential access to virtual care. Future studies should examine how social determinants intersect to impact virtual health care access in different patient populations.