Supportive care services in New Brunswick, Canada: An environmental scan.

Cancer diagnosis and treatment often have significant physical and psychological implications for both the survivor and their family/caregivers. Necessary services extend beyond medical treatment and include a variety of supportive care services (SCS) that address individuals' physical, social, educational, and emotional needs. This study seeks to map the SCS available in the province of New Brunswick (NB), Canada, for cancer survivors, their families, and their caregivers. An environmental scan was conducted to assess current SCS available in NB. While some SCS exist in NB, they are not always easily accessible or identifiable, and gaps in services were prevalent. In particular, a gap in services was found for individuals who are no longer actively receiving cancer treatment, as well as for family members and caregivers.

Effectiveness of a Mental Health Chatbot for People With Chronic Diseases: Randomized Controlled Trial.

BACKGROUND: People with chronic diseases tend to experience more mental health issues than their peers without these health conditions. Mental health chatbots offer a potential source of mental health support for people with chronic diseases. OBJECTIVE: The aim of this study was to determine whether a mental health chatbot can improve mental health in people with chronic diseases. We focused on 2 chronic diseases in particular: arthritis and diabetes. METHODS: Individuals with arthritis or diabetes were recruited using various web-based methods. Participants were randomly assigned to 1 of 2 groups. Those in the treatment group used a mental health chatbot app (Wysa [Wysa Inc]) over a period of 4 weeks. Those in the control group received no intervention. Participants completed measures of depression (Patient Health Questionnaire-9), anxiety (Generalized Anxiety Disorder Scale-7), and stress (Perceived Stress Scale-10) at baseline, with follow-up testing 2 and 4 weeks later. Participants in the treatment group completed feedback questions on their experiences with the app at the final assessment point. RESULTS: A total of 68 participants (n=47, 69% women; mean age 42.87, SD 11.27 years) were included in the analysis. Participants were divided evenly between the treatment and control groups. Those in the treatment group reported decreases in depression (P<.001) and anxiety (P<.001) severity over the study period. No such changes were found among participants in the control group. No changes in stress were reported by participants in either group. Participants with arthritis reported higher levels of depression (P=.004) and anxiety (P=.004) severity than participants with diabetes over the course of the study, as well as higher levels of stress (P=.01); otherwise, patterns of results were similar across these health conditions. In response to the feedback questions, participants in the treatment group said that they liked many of the functions and features of the app, the general design of the app, and the user experience. They also disliked some aspects of the app, with most of these reports focusing on the chatbot's conversational abilities. CONCLUSIONS: The results of this study suggest that mental health chatbots can be an effective source of mental health support for people with chronic diseases such as arthritis and diabetes. Although cost-effective and accessible, these programs have limitations and may not be well suited for all individuals. TRIAL REGISTRATION: ClinicalTrials.gov NCT04620668; https://www.clinicaltrials.gov/study/NCT04620668.

Obtaining Consent for Research on Risky Behaviours Among Adolescents in Canada: A Scoping Review.

This scoping review explores current practices for obtaining consent in research on risky behaviours among adolescents in Canada. The JBI methodology for scoping reviews was used. The database search was conducted in August 2021 and updated in November 2022. Papers published in 2010 or later were included. Extracted data included study characteristics, sample characteristics, and consent procedures. The review included 83 reports covering 57 studies. Nearly 60% of studies relied on adolescent self-consent for participation. Adolescent self-consent was more common than parental/guardian consent for studies using in-person research methods, older adolescent groups, and particularly vulnerable populations. Parental/guardian consent was more common for studies using younger age groups and general population samples. Adolescent self-consent was more common than parental/guardian consent for most risky behaviours covered by this review. These results provide insight into current consent practices in this area and offer guidance to researchers and institutional review boards in Canada.

Depiction of conversational agents as health professionals: a scoping review.

OBJECTIVE: The purpose of this scoping review was to examine the depiction of conversational agents as health professionals. We identified the professional characteristics that are used with these depictions and determined the prevalence of these characteristics among conversational agents that are used for health care. INTRODUCTION: The depiction of conversational agents as health professionals has implications for both the users and the developers of these programs. For this reason, it is important to know more about these depictions and how they are implemented in practical settings. INCLUSION CRITERIA: This review included scholarly literature on conversational agents that are used for health care. It focused on conversational agents designed for patients and health seekers, not health professionals or trainees. Conversational agents that address physical and/or mental health care were considered, as were programs that promote healthy behaviors. METHODS: This review was conducted in accordance with JBI methodology for scoping reviews. The databases searched included MEDLINE (PubMed), Embase, CINAHL with Full Text (EBSCOhost), Scopus, Web of Science, ACM Guide to Computing Literature (Association for Computing Machinery Digital Library), and IEEE Xplore (IEEE). The main database search was conducted in June 2021, and an updated search was conducted in January 2022. Extracted data included characteristics of the report, basic characteristics of the conversational agent, and professional characteristics of the conversational agent. Extracted data were summarized using descriptive statistics. Results are presented in a narrative summary and accompanying tables. RESULTS: A total of 38 health-related conversational agents were identified across 41 reports. Six of these conversational agents (15.8%) had professional characteristics. Four conversational agents (10.5%) had a professional appearance in which they displayed the clothing and accessories of health professionals and appeared in professional settings. One conversational agent (2.6%) had a professional title (Dr), and 4 conversational agents (10.5%) were described as having professional roles. Professional characteristics were more common among embodied vs disembodied conversational agents. CONCLUSIONS: The results of this review show that the depiction of conversational agents as health professionals is not particularly common, although it does occur. More discussion is needed on the potential ethical and legal issues surrounding the depiction of conversational agents as health professionals. Future research should examine the impact of these depictions, as well as people's attitudes toward them, to better inform recommendations for practice.

Fostering collective leadership to improve integrated primary care: lessons learned from the PriCARE program.

Case management (CM) is an intervention for improving integrated care for patients with complex care needs. The implementation of this complex intervention often raises opportunities for change and collective leadership has the potential to optimize the implementation. However, the application of collective leadership in real-world is not often described in the literature. This commentary highlights challenges faced during the implantation of a CM intervention in primary care for people with complex care needs, including stakeholders' buy-in and providers' willingness to change their practice, selection of the best person for the case manager position and staff turnover. Based on lessons learned from PriCARE research program, this paper encourages researchers to adopt collective leadership strategies for the implementation of complex interventions, including promoting a collaborative approach, fostering stakeholders' engagement in a trusting and fair environment, providing a high level of communication, and enhancing collective leadership attitudes and skills. The learnings from the PriCARE program may help guide researchers for implementing complex healthcare interventions.

Navigating meaningful engagement: lessons from partnering with youth and families in brain-based disability research.

BACKGROUND: While patient and family engagement in research has become a widespread practice, meaningful and authentic engagement remains a challenge. In the READYorNot™ Brain-Based Disabilities Study, we developed the MyREADY Transition™ Brain-Based Disabilities App to promote education, empowerment, and navigation for the transition from pediatric to adult care among youth with brain-based disabilities, aged 15-17 years old. Our research team created a Patient and Family Advisory Council (PFAC) to engage adolescents, young adults, and parent caregivers as partners throughout our multi-year and multi-stage project. MAIN BODY: This commentary, initiated and co-authored by members of our PFAC, researchers, staff, and a trainee, describes how we corrected the course of our partnership in response to critical feedback from partners. We begin by highlighting an email testimonial from a young adult PFAC member, which constituted a "critical turning point," that unveiled feelings of unclear expectations, lack of appreciation, and imbalanced relationships among PFAC members. As a team, we reflected on our partnership experiences and reviewed documentation of PFAC activities. This process allowed us to set three intentions to create a collective goal of authentic and meaningful engagement and to chart the course to get us there: (1) offering clarity and flexibility around participation; (2) valuing and acknowledging partners and their contributions; and (3) providing choice and leveraging individual interests and strengths. Our key recommendations include: (1) charting the course with a plan to guide our work; (2) learning the ropes by developing capacity for patient-oriented research; (3) all hands on deck by building a community of engagement; and (4) making course corrections and being prepared to weather the storms by remaining open to reflection, re-evaluation, and adjustment as necessary. CONCLUSIONS: We share key recommendations and lessons learned from our experiences alongside examples from the literature to offer guidance for multi-stage research projects partnering with adolescents, young adults, and family partners. We hope that by sharing challenges and lessons learned, we can help advance patient and family engagement in research.

Registered Nurses and Practical Nurses Working Together: An Institutional Ethnography.

In Canada, different categories of nursing professionals, including registered nurses and practical nurses, often "collaborate" to provide care to patients. How their collaboration is currently conceptualized in the literature varies; and these conceptualizations are not always contextualized by the complex sociopolitical environment in which nursing professionals work. The purpose of this study was to explicate how different categories of nursing professionals (registered nurses and practical nurses) worked together to provide patient care after a provincial health authority implemented a new nursing care delivery model to "optimize" patient care. The authors used Smith's institutional ethnography to guide the study, and data collection methods included observing, conducting interviews, and identifying the texts activated through the nursing professionals' work. Data analysis focused on the social organization of the nursing professionals collaboration, while keeping the complex contexts within they completed their daily work in view. The article concludes with recommendations for future research.

Using theater as an innovative knowledge translation approach for health research: a scoping review protocol.

OBJECTIVE: The objective of this review is to synthesize the existing literature on how theater has been used as a knowledge translation approach for health research and to identify the outcome measures employed for evaluation and the facilitators/challenges related to this approach. INTRODUCTION: The use of arts-based knowledge translation methods is relatively new in health research but has already shown to have positive impacts on knowledge, attitudes, policy, and practice. Specifically, theater has proven to be an effective approach for communicating research findings in a way which stimulates thought and discussion on important health-related topics. INCLUSION CRITERIA: This review will include scholarly literature on how theater is being used as a knowledge translation approach for health research. The review will not impose any limitations related to demographic variables, health issues, or settings. The review will consider papers using any study design, and will also consider other literature, such as protocols, descriptive papers, unpublished papers, and evaluation reports. METHODS: This review will be conducted in accordance with the JBI methodology for scoping reviews. The databases to be searched will include CINAHL (EBSCOhost), Embase, MEDLINE (Ovid), Academic Search Premier (EBSCOhost), and Scopus. Google/Google Scholar and ProQuest Dissertations and Theses will also be searched for unpublished studies and gray literature. All literature identified in the search will be screened by 2 independent reviewers and the results will be presented in a Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) flow diagram. The data extracted from the included literature will be presented in both tabular and narrative format. THIS PROTOCOL HAS BEEN REGISTERED ON OPEN SCIENCE FRAMEWORK: https://doi.org/10.17605/OSF.IO/GBCPJ.

Barriers and facilitators for engaging in the practice of medical assistance in dying among providers in Canada: a scoping review protocol.

OBJECTIVE: This review will explore the perceived barriers and facilitators for engaging in the practice of medical assistance in dying (MAiD) from the perspective of physicians, nurse practitioners, and medical residents in Canada. INTRODUCTION: The number of MAiD requests in Canada is growing steadily and is predicted to continue to grow with the passing of Bill C-7 in 2021, which expands access to individuals whose deaths are not reasonably foreseeable. Under federal law, physicians and nurse practitioners are the only health care professionals permitted to assess for and administer MAiD. Providers are not obligated to engage in the practice of MAiD; therefore, patient access relies on providers' readiness to engage in the practice. More information is needed to understand the barriers and facilitators for engaging in MAiD care from the perspective of providers. INCLUSION CRITERIA: This review will consider studies that identify physicians, nurse practitioners, and medical residents' perceived barriers and facilitators for engaging in the practice of MAiD in Canada. Physicians, nurse practitioners, and medical residents who do not directly administer MAiD, including those who identify as conscientious objectors or non-participants, will be included. Studies looking at barriers and facilitators for providing MAiD care to individuals with dementia, mental illness, or for individuals under the age of 18 years will be excluded. METHODS: MEDLINE, Embase, CINAHL with Full-text, and APA PsycINFO will be searched. Studies will be screened and data extracted by 2 independent reviewers using a tool created for this review. The scoping review findings will be presented in a narrative format and mapped in tables to address the review aims.

Connecting Health and Social Services for Patients with Complex Care Needs: A Pan-Canadian Comparative Policy Research Program.

Comprehensive primary healthcare for patients with complex care needs requires connections to other health services, social services and community supports. This descriptive comparative policy research program used publicly available documents and informant interviews to examine progress toward integrated comprehensive care through the lens of services needed by children and youth (0-25 years) and community-dwelling older adults (≥ 65 years) with high functional health needs. This article describes five projects. The following three findings emerged across all the projects: Canada indeed has multiple health systems; numerous integrated service delivery solutions are being trialled and most focus on medical services; and it is an ongoing challenge for ministries of health to engage physicians and physician associations in integration.

Toward Comprehensive Care Integration in Canada: Delphi Process Findings from Researchers, Clinicians, Patients and Decision Makers.

Introduction: From a larger study examining policy and program information on how Canadian provinces integrate care services, this study aimed to create "priority lists" of 10-15 services that are "absolutely needed" for care integration. Methodology: A diverse group of over 50 Canadian stakeholders participated in virtual consensus-building using the nominal group technique and a modified e-Delphi method to identify services that focused on two different groups: children and youth with high functional health needs and older adults in functional decline. Results: Three lists - containing services, processes and infrastructure elements - emerged: one per tracer condition group and a consolidated list. The latter identified the following five services as top priority for primary care integration: mental health and addictions services; home care; transition between urgent-emergency-acute care; medication reconciliation in community pharmacies; and respite care. No single social service was a clear priority, but those that mitigate material deprivation emerged within the top 10. Discussion: This humble pan-Canadian study shows that priority services in health and social services are neither well integrated nor connected to primary care. It also suggests that effective policy strategizing for primary care integration for those with complex care needs may require thinking beyond the logic of services - given their siloed organization.

Innovative Programs with Multi-Service Integration for Children and Youth with High Functional Health Needs.

The integration of care services and providers across the health-social-community continuum has helped improve the lives of many children and youth living with complex health conditions. Using environmental scan data, 16 promising multi-service programs were selected and analyzed qualitatively through a deliberative conversation approach. Descriptive data of analyzed programs are presented, as well as the thematic analysis results. An important program strength is its clear founding principles and engagement of patients and families. However, the scale-up of these initiatives remains a challenge unless such programs can be better financed and supported.

Stakeholders' perceptions of a nurse-led telehealth case management intervention in primary care for patients with complex care needs: a qualitative descriptive study.

OBJECTIVE: With the onset of the COVID-19 pandemic, telehealth case management (TCM) was introduced in primary care for patients requiring care by distance. While not all healthcare needs can be addressed via telehealth, the use of information and communication technology to support healthcare delivery has the potential to contribute to the management of patients with chronic conditions and associated complex care needs. However, few qualitative studies have documented stakeholders' perceptions of TCM. This study aimed to describe patients', primary care providers' and clinic managers' perceptions of the use of a nurse-led TCM intervention for primary care patients with complex care needs. DESIGN: Qualitative descriptive study. SETTING: Three primary care clinics in three Canadian provinces. PARTICIPANTS: Patients with complex care needs (n=30), primary care providers (n=11) and clinic managers (n=2) participated in qualitative individual interviews and focus groups. INTERVENTION: TCM intervention was delivered by nurse case managers over a 6-month period. RESULTS: Participants' perceptions of the TCM intervention were summarised in three themes: (1) improved patient access, comfort and sense of reassurance; (2) trusting relationships and skilled nurse case managers; (3) activities more suitable for TCM. TCM was a generally accepted mode of primary care delivery, had many benefits for patients and providers and worked well for most activities that do not require physical assessment or treatment. Participants found TCM to be useful and a viable alternative to in-person care. CONCLUSIONS: TCM improves access to care and is successful when a relationship of trust between the nurse case manager and patient can develop over time. Healthcare policymakers and primary care providers should consider the benefits of TCM and promote this mode of delivery as a complement to in-person care for patients with complex care needs.

Transitioning from paediatric to adult healthcare: Exploring the practices and experiences of care providers.

Complex paediatric health conditions are increasingly associated with survival into adulthood resulting in more youth with complex care needs (CCN) transitioning from paediatric to adult healthcare. Current transition practices, when present, are disorganized, resulting in health status deterioration and complications due to unmet needs. The aim of this qualitative descriptive study is to develop a broader understanding of the current transition practices and experiences, as well as recommendations of care providers who support youth with CCN in the transition from paediatric to adult healthcare. Fifteen care providers from two Eastern Canadian provinces were interviewed using a semi-structured interview guide. The data collected were analyzed using inductive thematic analysis following the six phases outlined by Braun and Clarke (2006). The findings from this research demonstrate (1) a shortage of care providers, (2) inconsistent timing for transition initiation, and (3) lack of available community resources and services. Participant recommendations include (1) a designated transition coordinator; (2) transition policy implementation; (3) improved collaboration between and across care teams; and (4) the integration of virtual care to facilitate the transition process. The results of this study can potentially improve transition practices and policies and guide future research in this area.

Patient engagement in health implementation research: A logic model.

INTRODUCTION: Growing evidence supports patient engagement (PE) in health implementation research to improve the quality, relevance and uptake of research. However, more guidance is needed to plan and operationalize PE before and throughout the research process. The aim of the study was to develop a logic model illustrating the causal links between context, resources, activities, outcomes and impact of PE in an implementation research programme. METHODS: The Patient Engagement in Health Implementation Research Logic Model (hereafter the Logic Model) was developed using a descriptive qualitative design with a participatory approach, in the context of the PriCARE programme. This programme aims to implement and evaluate case management for individuals who frequently use healthcare services in primary care clinics across five Canadian provinces. Participant observation of team meetings was performed by all team members involved in the programme and in-depth interviews were conducted by two external research assistants with team members (n = 22). A deductive thematic analysis using components of logic models as coding categories was conducted. Data were pooled in the first version of the Logic Model, which was refined in research team meetings with patient partners. The final version was validated by all team members. RESULTS: The Logic Model highlights the importance of integrating PE into the project before its commencement, with appropriate support in terms of funding and time allocation. The governance structure and leadership of both principal investigators and patient partners have significant effects on PE activities and outcomes. As an empirical and standardized illustration that facilitates a shared understanding, the Logic Model provides guidance for maximizing the impact of patient partnership in various contexts for research, patients, providers and health care. CONCLUSION: The Logic Model will help academic researchers, decision makers and patient partners plan, operationalize, and assess PE in implementation research for optimal outcomes. PATIENT OR PUBLIC CONTRIBUTION: Patient partners from the PriCARE research programme contributed to developing the research objectives and designing, developing and validating data collection tools, producing data, developing and validating the Logic Model and reviewing the manuscript.

Experiences of people with dementia and informal caregivers with post-diagnostic support: Data from the international COGNISANCE study.

OBJECTIVES: The study aims to describe people with dementia and informal caregivers' respective experiences of support after diagnosis and compares these experiences. Additionally, we determine how people with dementia and informal caregivers who are satisfied with support differ from those dissatisfied. METHODS: A cross-sectional survey study in Australia, Canada, the Netherlands, Poland, and United Kingdom was carried out to examine people with dementia and informal caregivers experience with support (satisfaction with information, access to care, health literacy, and confidence in ability to live well with dementia). The separate surveys contained closed questions. Analysis consisted of descriptive statistics and Chi-square tests. RESULTS: Ninety people with dementia and 300 informal caregivers participated, and 69% of people with dementia and 67% of informal caregivers said support after diagnosis helped them deal more efficiently with their concerns. Up to one-third of people with dementia and informal caregivers were dissatisfied with information about management, prognosis, and strategies for living positively. Few people with dementia (22%) and informal caregivers (35%) received a care plan. People with dementia were more often satisfied with information, had more often confidence in their ability to live well with dementia, and were less often satisfied with access to care compared to informal caregivers. Informal caregivers who were satisfied with support were more satisfied with information and access to care compared to informal caregivers not satisfied with support. CONCLUSIONS: Experience of dementia support can be improved and people with dementia and informal caregiver differ in their experiences of support.

Implementation analysis of a case management intervention for people with complex care needs in primary care: a multiple case study across Canada.

BACKGROUND: Case management is one of the most frequently performed interventions to mitigate the negative effects of high healthcare use on patients, primary care providers and the healthcare system. Reviews have addressed factors influencing case management interventions (CMI) implementation and reported common themes related to the case manager role and activities, collaboration with other primary care providers, CMI training and relationships with the patients. However, the heterogeneity of the settings in which CMI have been implemented may impair the transferability of the findings. Moreover, the underlying factors influencing the first steps of CMI implementation need to be further assessed. This study aimed to evaluate facilitators and barriers of the first implementation steps of a CMI by primary care nurses for people with complex care needs who frequently use healthcare services. METHODS: A qualitative multiple case study was conducted including six primary care clinics across four provinces in Canada. In-depth interviews and focus groups with nurse case managers, health services managers, and other primary care providers were conducted. Field notes also formed part of the data. A mixed thematic analysis, deductive and inductive, was carried out. RESULTS: Leadership of the primary care providers and managers facilitated the first steps of the of CMI implementation, as did the experience and skills of the nurse case managers and capacity development within the teams. The time required to establish CMI was a barrier at the beginning of the CMI implementation. Most nurse case managers expressed apprehension about developing an "individualized services plan" with multiple health professionals and the patient. Clinic team meetings and a nurse case managers community of practice created opportunities to address primary care providers' concerns. Participants generally perceived the CMI as a comprehensive, adaptable, and organized approach to care, providing more resources and support for patients and better coordination in primary care. CONCLUSION: Results of this study will be useful for decision makers, care providers, patients and researchers who are considering the implementation of CMI in primary care. Providing knowledge about first steps of CMI implementation will also help inform policies and best practices.