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Abstract Background Poorly supported transitions from pediatric to adult healthcare can lead to negative health outcomes for youth and their families. To better understand the current landscape of healthcare transition care across Canada, the Canadian Health Hub in Transition (the “Transition Hub”, established in 2019) identified a need to: (1) describe programs and services supporting the transition from pediatric to adult healthcare across Canada; and (2) identify strengths, barriers, and gaps affecting the provision of transition services. Methods Our project included two iterative steps: a national survey followed by a qualitative descriptive study. Service providers were recruited from the Transition Hub and invited to complete the survey and participate in the qualitative study. The survey was used to collect program information (e.g., setting, clinical population, program components), and semi-structured interviews were used to explore providers’ perspectives on strengths, barriers, and gaps in transition services. Qualitative data were analyzed using the Framework Method. Results Fifty-one surveys were completed, describing 48 programs (22 pediatric, 19 bridging, and 7 adult) across 9 provinces. Almost half of the surveyed programs were in Ontario (44%) and most programs were based in hospital (65%) and outpatient settings (73%). There was wide variation in the ages served, with most programs focused on specific diagnostic groups. Qualitative findings from 23 interviews with service providers were organized into five topics: (1) measuring transition success; (2) program strengths; (3) barriers and gaps; (4) strategies for improvement; and (5) drivers for change. Conclusions While national transition guidelines exist in Canada, there is wide variation in the way young people and their families are supported. A national strategy, backed by local leadership, is essential for instigating system change toward sustainable and universally accessible support for healthcare transition in Canada.

Abstract Background Patient-oriented research is now widely regarded as key to improving health systems and patient outcomes. This shift toward meaningful patient involvement in health research has sparked a growing interest in patient-oriented research training across Canada. Yet some barriers to participation, including distance and scheduling constraints, may impede the provision of in-person patient-oriented research training. Virtual course delivery options may help surmount those barriers, as well as offer unique pedagogical advantages. Objective To help increase patient-oriented research training uptake, the research team adapted the Canadian Institutes of Health Research’s (CIHR) Strategy for Patient-Oriented Research’s Foundations for Patient-Oriented Research course to a virtual format. The course consists of three modules, which focus respectively on patient-oriented research, health research methods, and teamwork skills. The current evaluation of this virtual delivery examines how a diverse set of participants received the online course. Methods Course participants from a variety of professional backgrounds, including researchers, patients, clinicians, and policy decision-makers, were recruited from across Canada to participate in the adapted course. Participant and facilitator feedback was solicited via online surveys that were distributed shortly after the delivery of each module. Results Over the span of the current project, the online course was delivered seven times across Canada. A total of 189 learners and 12 facilitators participated in the course. We received 89 completed feedback surveys in total. These included a total of 78 responses from learners, with 22 on Module 1, 32 on Module 2, and 24 on Module 3, in addition to 11 responses from facilitators. Overall, participants and facilitators were very satisfied with the course, indicating a successful adaptation from traditional to online delivery. Survey respondents were especially pleased with the course’s co-learning elements, which exposed them to fresh perspectives and real patient voices, as well as ample opportunity for discussion. Some participants offered recommendations for minor course revisions. Future iterations of the course will reflect participant and facilitator feedback to enhance accessibility via minor changes to course format (e.g., shorter live sessions), content (e.g., more concrete examples), and workload (e.g., reduced pre-work requirements). Conclusions Sustainable and effective health care depends on health research that includes active partnerships across diverse populations. These collaborative relationships are fostered by strong capacity in patient-oriented research, which in turn hinges on widely accessible training opportunities. This online course overcomes common barriers to face-to-face training and offers the accessible, inclusive training environment required for sustained progress in patient-oriented research.

Introduction Internationally, the number of individuals living with dementia continues to rise. Individuals living with dementia, their care partners and their care team face many barriers and challenges to accessing dementia care resources and supports. One solution to address the multifaceted care needs of this population is patient navigation (PN).Methods and analysis This protocol describes the implementation and evaluation plan for a pilot PN programme in New Brunswick (NB) Canada for individuals living with dementia, their care partners and care providers. This project will include two components: (1) an in-person PN programme called Navigating Dementia NB/ Naviguer la démence NB and (2) two virtual peer-to-peer navigational support groups. The PN programme will be codesigned with stakeholders including researchers, patient partners, clinicians and health system managers. Patient navigators will be housed at six primary care sites across the province and the services will be offered in English and French. We will conduct a mixed-methods evaluation to explore the characteristics and experiences of participants who enrol in the PN programme and the navigational support groups, as well as the facilitators and barriers to implementation. Data collection will include navigation charts, Facebook analytics, as well as postintervention surveys, semistructured interviews and focus groups. All participants will provide written informed consent to take part in the intervention and have their data collected for research and evaluation purposes. Demographic data will be analysed using frequency and central tendency measures, while qualitative data from interviews and focus groups will undergo thematic analysis. Content analysis will be used to analyse posts published to the Facebook groups. The evaluation will assess the programme’s effectiveness in the short and medium terms, evaluating its ability to achieve the intended outcomes.Ethics and dissemination This study has been approved by the research ethics boards at the University of New Brunswick, Université de Moncton, Horizon Health Network and Vitalité Health Network. Knowledge translation activities (eg, presentations at local, national and international conferences; publications for open-access journals; reports and lay summaries) will be undertaken to share the findings from this pilot project with diverse stakeholders, such as decision-makers, health system managers, clinicians and the general public.

BackgroundIn recent years, there has been an increase in the use of conversational agents for health promotion and service delivery. To date, health professionals’ views on the use of this technology have received limited attention in the literature. ObjectiveThe purpose of this study was to gain a better understanding of how health professionals view the use of conversational agents for health care. MethodsPhysicians, nurses, and regulated mental health professionals were recruited using various web-based methods. Participants were interviewed individually using the Zoom (Zoom Video Communications, Inc) videoconferencing platform. Interview questions focused on the potential benefits and risks of using conversational agents for health care, as well as the best way to integrate conversational agents into the health care system. Interviews were transcribed verbatim and uploaded to NVivo (version 12; QSR International, Inc) for thematic analysis. ResultsA total of 24 health professionals participated in the study (19 women, 5 men; mean age 42.75, SD 10.71 years). Participants said that the use of conversational agents for health care could have certain benefits, such as greater access to care for patients or clients and workload support for health professionals. They also discussed potential drawbacks, such as an added burden on health professionals (eg, program familiarization) and the limited capabilities of these programs. Participants said that conversational agents could be used for routine or basic tasks, such as screening and assessment, providing information and education, and supporting individuals between appointments. They also said that health professionals should have some oversight in terms of the development and implementation of these programs. ConclusionsThe results of this study provide insight into health professionals’ views on the use of conversational agents for health care, particularly in terms of the benefits and drawbacks of these programs and how they should be integrated into the health care system. These collective findings offer useful information and guidance to stakeholders who have an interest in the development and implementation of this technology.

Le diagnostic et le traitement du cancer laissent rarement les survivants et leurs proches physiquement et psychologiquement indemnes. Les services dont ils ont besoin dépassent le seul traitement médical, c’est-à-dire qu’il leur faut une variété de soins de soutien répondant à leurs besoins physiques, sociaux, informationnels et émotionnels. La présente étude a pour objectif de répertorier les services de soutien destinés aux survivants du cancer, aux membres de leur famille et à leurs proches aidants qui sont disponibles dans la province du Nouveau-Brunswick, au Canada. Pour ce faire, nous avons procédé à une analyse de l’environnement, ce qui nous a permis de constater que les services disponibles dans la province ne sont pas facilement repérables ou accessibles. On a observé tout particulièrement des lacunes dans les services aux survivants, à leur famille et à leurs proches, en phase post-traitement.

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.

Introduction Case management (CM) is among the most studied effective models of integrated care for people with complex needs. The goal of this study is to scale up and assess CM in primary healthcare for people with complex needs.Methods and analysis The research questions are: (1) which mechanisms contribute to the successful scale-up of CM for people with complex needs in primary healthcare?; (2) how do contextual factors within primary healthcare organisations contribute to these mechanisms? and (3) what are the relationships between the actors, contextual factors, mechanisms and outcomes when scaling-up CM for people with complex needs in primary healthcare? We will conduct a mixed methods Canadian interprovincial project in Quebec, New-Brunswick and Nova Scotia. It will include a scale-up phase and an evaluation phase. At inception, a scale-up committee will be formed in each province to oversee the scale-up phase. We will assess scale-up using a realist evaluation guided by the RAMESES checklist to develop an initial programme theory on CM scale-up. Then we will test and refine the programme theory using a mixed-methods multiple case study with 10 cases, each case being the scalable unit of the intervention in a region. Each primary care clinic within the case will recruit 30 adult patients with complex needs who frequently use healthcare services. Qualitative data will be used to identify contexts, mechanisms and certain outcomes for developing context–mechanism–outcome configurations. Quantitative data will be used to describe patient characteristics and measure scale-up outcomes.Ethics and dissemination Ethics approval was obtained. Engaging researchers, decision-makers, clinicians and patient partners on the study Steering Committee will foster knowledge mobilisation and impact. The dissemination plan will be developed with the Steering Committee with messages and dissemination methods targeted for each audience.

Abstract 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.

Abstract 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.

BackgroundPeople 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. ObjectiveThe 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. MethodsIndividuals 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. ResultsA 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

Abstract 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.

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.

There is a growing number of youth with healthcare needs such as disabilities or chronic health conditions who require lifelong care. In Canada, transfer to the adult healthcare system typically occurs at age 18 and is set by policy regardless of whether youth and their families are ready. When the transition to adult services is suboptimal, youth may experience detrimental gaps in healthcare resulting in increased visits to the emergency department and poor healthcare outcomes. Despite the critical need to support youth with disabilities and their families to transition to the adult healthcare system, there is limited legislation to ensure a successful transfer or to mandate transition preparation in Canada. This advocacy and policy planning work was conducted in partnership with the Patient and Family Advisory Council (PFAC) within the CHILD-BRIGHT READYorNot™ Brain-Based Disabilities (BBD) Project and the CHILD-BRIGHT Policy Hub. Together, we identified the need to synthesize and better understand existing policies about transition from pediatric to adult healthcare, and to recommend solutions to improve healthcare access and equity as Canadian youth with disabilities become adults. In this perspective paper, we will report on a dialogue with key informants and make recommendations for change in healthcare transition policies at the healthcare/community, provincial and/or territorial, and/or national levels.

Abstract 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.

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.

Abstract Background Studies have highlighted common challenges and barriers to patient engagement in research, but most were based on patient partners' or academic researchers' experiences. A better understanding of how both groups differentially experience their partnership could help identify strategies to improve collaboration in patient engagement research. Aim This study aimed to describe and compare patient partners' and academic researchers' experiences in patient engagement research. Methods Based on a participatory approach, a descriptive qualitative study was conducted with patient partners and academic researchers who are involved in the PriCARE research programme in primary health care to examine their experience of patient engagement. Individual semi‐structured interviews with patient partners (n = 7) and academic researchers (n = 15) were conducted. Academic researchers' interview verbatims, deidentified patient partners' summaries of their interviews and summaries of meetings with patient partners were analysed using inductive thematic analysis in collaboration with patient partners. Results Patient partners and academic researchers' experiences with patient engagement are captured within four themes: (1) evolving relationships; (2) creating an environment that fosters patient engagement; (3) striking a balance; and (4) impact and value of patient engagement. Evolving relationships refers to how partnerships grew and improved over time with an acceptance of tensions and willingness to move beyond them, two‐way communication and leadership of key team members. Creating an environment that fosters patient engagement requires appropriate structural support, such as clear descriptions of patient partner roles; adequate training for all team members; institutional guidance on patient engagement; regular and appropriate translation services; and financial assistance. For patient partners and academic researchers, striking a balance referred to the challenge of reconciling patient partners' interests and established research practices. Finally, both groups recognized the value and positive impact of patient engagement in the programme in terms of improving the relevance of research and the applicability of results. While patient partners and academic researchers identified similar challenges and strategies, their experiences of patient engagement differed according to their own backgrounds, motives and expectations. Conclusion Both patient partners and academic researchers highlighted the importance of finding a balance between providing structure or guidelines for patient engagement, while allowing for flexibility along the way. Patient or Public Contribution Patient partners from the PriCARE research programme were involved in the following aspects of the current study: (1) development of the research objectives; (2) planning of the research design; (3) development and validation of data collection tools (i.e., interview guides); (4) production of data (i.e., acted as interviewees); (5) validation of data analysis tools (code book); (6) analysis of qualitative data; and (7) drafting of the manuscript and contributing to other knowledge translation activities, such as conference presentations and the creation of a short animated video.

Abstract Background Patient‐reported outcome measures (PROMs) are widely recognized as important tools for achieving a patient‐centred approach in health research. While PROMs are subject to several stages of validation during development, even questionnaires with robust psychometric properties may challenge patient comfort and understanding. Aim Building on the experience of patient engagement in the PriCARE research programme, this paper outlines the team's response to concerns raised by patient partners regarding the administration of the questionnaire. Methods Based on a participatory action research design and the patient engagement framework in the Strategy for Patient‐Oriented Research of the Canadian Institutes of Health Research, PriCARE team members worked together to discuss concerns, review the questionnaires and come up with solutions. Data were collected through participant observation of team meetings. Results This paper demonstrates how patient partners were engaged in PriCARE and integrated into the programme's governance structure, focusing on the challenges that they raised regarding the questionnaires and how these were addressed by PriCARE team members in a six‐step approach: (1) Recognizing patient partner concerns, discussing concerns and reframing the challenges; (2) Detailing and sharing evidence of the validity of the questionnaires; (3) Evaluating potential solutions; (4) Searching the literature for guidelines; (5) Creating guidelines; and (6) Sharing and refining guidelines. Conclusion This six‐step approach demonstrates how research teams can integrate patient partners as equal members, develop meaningful collaboration through recognition of individual experiences and expertise and ensure that the patient perspective is taken into consideration in research and healthcare innovation. Patient or Public Contribution All patient partners from the PriCARE programme were actively involved in the six‐step approach. They were also involved in the preparation of the manuscript.

Abstract Background Adults with chronic conditions who also suffer from mental health comorbidities and/or social vulnerability require services from many providers across different sectors. They may have complex health and social care needs and experience poorer health indicators and high mortality rates while generating considerable costs to the health and social services system. In response, the literature has stressed the need for a collaborative approach amongst providers to facilitate the care transition process. A better understanding of care transitions is the next step towards the improvement of integrated care models. The aim of the study is to better understand care transitions of adults with complex health and social care needs across community, primary care, and hospital settings, combining the experiences of patients and their families, providers, and health managers. Methods/design We will conduct a two-phase mixed methods multiple case study (quantitative and qualitative). We will work with six cases in three Canadian provinces, each case being the actual care transitions across community, primary care, and hospital settings. Adult patients with complex needs will be identified by having visited the emergency department at least three times over the previous 12 months. To ensure they have complex needs, they will be invited to complete INTERMED Self-Assessment and invited to enroll if positive. For the quantitative phase, data will be obtained through questionnaires and multi-level regression analyses will be conducted. For the qualitative phase, semi-structured interviews and focus groups will be conducted with patients, family members, care providers, and managers, and thematic analysis will be performed. Quantitative and qualitative results will be compared and then merged. Discussion This study is one of the first to examine care transitions of adults with complex needs by adopting a comprehensive vision of care transitions and bringing together the experiences of patients and family members, providers, and health managers. By using an integrated knowledge translation approach with key knowledge users, the study’s findings have the potential to inform the optimization of integrated care, to positively impact the health of adults with complex needs, and reduce the economic burden to the health and social care systems.

Objective This review’s objective is to map the literature on the characteristics, impact, barriers and facilitators of hospital-based patient navigation programmes that support patients who experience injury-related trauma and their caregivers. Patients who experience injury-related trauma frequently require support from multiple care teams and face many challenges to care, both in hospital and when transitioning across settings and services. Patient navigation can improve their care.Design This review is conducted according to JBI methodology for scoping reviews. The initial database search took place on 6 June 2021 and the grey literature search took place between September and October 2021. The results are presented in a Preferred Reporting Items for Systematic Reviews and Meta-analyses for Scoping Reviews flow diagram.Setting This review considered materials where the patient navigation programmes were delivered in hospital settings. There was no geographical limit to this study.Participants This review focused on hospital-based patient navigation programmes for patients who experience injury-related trauma and/or their caregivers.Results This review captured 11 records that describe 10 programmes. All programmes were based in the USA. Most programmes provided education, care coordination, discharge planning, and referrals to resources, services, and programmes to assist patients and/or their families in the hospital or the community. Half the programmes were based in level 1 trauma centres. Common impacts included decreases in readmission rates and increases in satisfaction rates. Barriers included difficulty recruiting or enrolling patients with short hospital stays and hospital administrators’ and healthcare providers’ lack of understanding of the navigator role. Navigator background, either professional or experiential, was identified as a facilitator, as was flexibility in programme delivery and communication methods.Conclusions Eleven records show a small but distinct sample. Reported characteristics, impact, barriers and facilitators were consistent with findings from other patient navigation studies. The results can inform the development and implementation of similar programmes in trauma centres and support changes in policy to improve the delivery of care.

Objective The goal of this review was to identify recommendations within the literature on how to improve the transition from paediatric to adult healthcare from the perspective of young adults (YAs) living with chronic conditions who have gone through the process.Design This review was conducted in accordance with JBI methodology for scoping reviews.Search strategy We searched MEDLINE (Ovid), CINAHL (EBSCO), PsycINFO (EBSCO) and EMBASE (Elsevier) databases, and conducted a grey literature search for relevant material. The databases were searched in December 2019, and re-searched June 2020 and September 2020, while the grey literature was searched in April 2020. This scoping review focused on the recommendations of YAs with chronic conditions who have transitioned from paediatric to adult healthcare, in any setting (eg, hospital, clinic or community), and across all sectors (eg, health, education and social services).Results Eighteen studies met inclusion criteria for this review. These studies included YAs with 14 different chronic conditions, receiving primary health services in North America (67%) and Europe (33%). YAs’ recommendations for improving the transition from paediatric to adult healthcare (n=number of studies reported) included: improving continuity of care (n=12); facilitating patient-centred care (n=9); building strong support networks (n=11) and implementing transition education preparedness training (n=7).Conclusion Review findings can benefit service delivery by addressing important barriers to health, education, and social services for youth transitioning to adult healthcare.

Abstract Aims To systematically explore the structures, functions, outcomes, roles and nursing credentials of memory clinics where nurses autonomously lead diagnosis and postdiagnostic care. Design A systematic rapid review was conducted. Data sources MEDLINE (Ovid), CINAHL Full‐Text (EBSCO) and EMBASE were systematically searched in December 2019 with no timeframe limitations imposed. Review Methods The modified PRISMA checklist was used as a guide to facilitate the review. Articles identified were screened and assessed for inclusion criteria, and screening of reference lists of included studies was also completed. Results Six articles, published between 2011–2019, including two case studies, two descriptive reports, one qualitative study and one programme evaluation were included in the review. Nurse‐led memory clinics were situated in community centres, on university campuses, hospitals and in general practitioners' offices. The services offered included assessment, diagnosis and treatment/postdiagnostic care. Nurse credentials included advanced practice nurses and a community psychiatric nurse who was a non‐medical prescriber. Overall, there was low quantity and quality of evidence to evaluate outcomes.

BackgroundCaregivers of children and youth with complex care needs (CCNs) often require considerable support to ensure the well-being of their families. Social media present an opportunity to better support caregivers through computer-mediated communication for social support. Peer-to-peer (P2P) support groups are a way in which caregivers are accessing needed support; however, the experiences of caregivers who use these groups and the perceived impact that participation has on caregivers of children and youth with CCNs are not known. ObjectiveThis study aimed to explore the experiences of caregivers of children and youth with CCNs who use a Facebook-based P2P support group to communicate, understand their motivations to use the group, and investigate its perceived impact on knowledge of programs and services and sense of community belonging among caregivers. MethodsA qualitative descriptive design was used to explore the experiences and perceived impact of a Facebook-based (Meta Platforms) P2P support group for caregivers of children and youth with CCNs in New Brunswick, Canada. The group was launched on the web in October 2020, during the COVID-19 pandemic, and resulted in 108 caregivers joining the group. A web-based survey was distributed, and semistructured interviews were conducted in February 2021 with a subsample of members. Thematic analysis was used to identify and report patterns related to caregivers’ experiences and perceived impacts of participation. ResultsA subsample of members in the Facebook group completed the web-based survey (39/108, 36.1%) and interviews (14/108, 12.9%). A total of 5 themes emerged from the interviews: safe space, informational support and direction, web-based connection with peers, impact on knowledge of programs and services, and degree of community belonging. Participants reported joining the group to obtain geography-specific information support and connect with peers. Many participants reported an improvement in their knowledge of programs and services and felt connected to the community; however, the short observation period and diversity among the caregiver population were cited as barriers to community belonging. ConclusionsSocial media present an important opportunity to facilitate the exchange of support between patients and caregivers in an accessible and curated environment. Findings from this study suggest that involvement in web-based, geography-specific P2P support groups can influence perceived knowledge of services and resources and sense of community belonging among caregivers of children and youth with CCNs. Furthermore, this study provides insight into the experiences and motivations of caregivers of children and youth with CCNs who participate in a private social media environment.

Objective This scoping review aimed to map the range of programmes in the literature to support children and youth with complex care needs and their families during transitions in care in the community.Design A scoping review of the literature.Context This review included programmes that supported the transition in care to home and between settings in the community.Data sources We implemented our strategy to search five databases: (1) PubMed; (2) CINAHL; (3) ERIC; (4) PyscINFO and (5) Social Work Abstracts. The search was last implemented on 29 April 2021.Study selection Our search results were imported into Covidence Systematic Review Software. First, two reviewers assessed titles and abstracts against our eligibility criteria. Relevant articles were then retrieved in full and reviewed by two reviewers for inclusion. Disagreements were resolved by a third reviewer.Data extraction Relevant data were extracted related to population, concept, context, methods and key findings pertinent to our review objective.Results A total of 2482 records were identified. After our two-stage screening process, a total of 27 articles were included for analysis. Articles ranged in the type of transitions being supported and target population. The most common transition reported was the hospital-to-home transition. Intervention components primarily consisted of care coordination using a teams-based approach. The most reported barriers and enablers to implementing these transition care programmes were related to physical opportunities.Limitations Included articles were limited to English and French.Conclusions This review identified important gaps within the literature, as well as areas for future consideration to ensure the effective development and implementation of programmes to support children and youth with complex care needs during transitions in care.

BackgroundCaregivers of children and youth with complex care needs (CCN) require substantial support to ensure the well-being of their families. Web-based peer-to-peer (P2P) support groups present an opportunity for caregivers to seek and provide timely informational and emotional support. Despite the widespread use of social media for health-related support across diverse patient and caregiver populations, it is unclear how caregivers of children and youth with CCN use and potentially benefit from these groups. ObjectiveThe aim of this study is to explore the use of a web-based P2P support group for caregivers of children and youth with CCN in New Brunswick, Canada, and investigate factors related to its use by members. MethodsThe study sample consisted of individuals who joined a closed Facebook group and an analysis of content published to the group. In phase 1, a Facebook group was developed in consultation with a patient and family advisory council, and members were recruited to the group. Phase 2 of this study consisted of an observation period during which posts and related interactions (ie, likes, loves, and comments) by members were collected. In phase 3, a web-based survey was distributed, and semistructured interviews were conducted with a subsample of group members. Survey and interview data were analyzed using thematic analysis. ResultsA total of 108 caregivers joined the Facebook group between October 2020 and March 2021. There were 93 posts with 405 comments and 542 associated interactions (448/542, 82.7% likes and 94/542, 17.3% loves). Of these 93 posts, 37 (40%) were made by group members, and 56 (60%) were made by moderators. Of the 108 members, a subsample of 39 (36.1%) completed a web-based survey, and 14 (13%) participated in the interviews. Content analyses of posts by members revealed that inquiry (17/37, 46%), informational (15/37, 41%), and emotional posts (4/37, 11%) were the most common. Emotional posts received the highest number of interactions (median 24.5). In total, 5 themes emerged from the interviews related to the use of the group and mediating factors of interactions between group members: resource for information, altruistic contribution, varying level of engagement, perceived barriers to and facilitators of group activity, and moderators as contributing members. ConclusionsThese findings demonstrate that caregivers of children and youth with CCN seek geography-specific P2P support groups to meet informational and social support needs. This study contributes to the knowledge on how caregivers use Facebook groups to meet their support needs through moderate and passive engagement.

Abstract Background This concept analysis aimed to clarify the meaning of “children with complex health conditions” and endorse a definition to inform future research, policy, and practice. Methods Using Walker and Avant’s (2011)‘s approach, we refined the search strategy with input from our team, including family representatives. We reviewed the published and grey literature. We also interviewed 84 health, social, and educational stakeholders involved in the care of children with complex health conditions about their use/understanding of the concept. Results We provided model, borderline, related, and contrary cases for clarification purposes. We identified defining attributes that nuance the concept: (1) conditions and needs’ breadth; (2) uniqueness of each child/condition; (3) varying extent of severity over time; 4) developmental age; and (5) uniqueness of each family/context. Antecedents were chronic physical, mental, developmental, and/or behavioural condition(s). There were individual, family, and system consequences, including fragmented services. Conclusions Building on previous definitions, we proposed an iteration that acknowledges the conditions’ changing trajectories as involving one or more chronic condition(s), regardless of type(s), whose trajectories can change over time, requiring services across sectors/settings, oftentimes resulting in a lower quality of life. A strength of this paper is the integration of the stakeholders’/family’s voices into the development of the definition.

Objective To examine the extent and nature of evidence on the use of the environmental scan (ES) in the health services delivery literature.Design Scoping review.Methods This scoping review followed the five-stage scoping review methodology outlined by Khalil et al. A Peer Review of Electronic Search Strategies was completed. Seven electronic databases and the grey literature were searched. Pairs of researchers independently performed two levels of screening and data extraction. Data were analysed using qualitative content and thematic analysis.Results Ninety-six studies were included in the scoping review. Researchers conducted ESs for many purposes, the most common being to examine the current state of programmes, services or policies. Recommendations were informed by ESs in 20% of studies. Most common data collection methods were literature review (71%), key informant or semistructured interviews (46%) and surveys (35%). Over half (53%) of the studies used a combination of passive (looking at information eg, literature, policies, guidelines) and active (looking for information eg, surveys, interviews) approaches to data collection. Person sources of data (eg, healthcare stakeholders, community representatives) and non-person sources of data (eg, documents, electronic databases, the web) were drawn on to a similar extent. The thematic analysis of the definitions/descriptions yielded several themes including instrument of discovery, knowledge synthesis, forward-looking and decision making. Research gaps identified included absence of a standard definition, inconsistencies in terminology and lack of guiding frameworks in the health services delivery context.Conclusion ESs were conducted to gather evidence and to help inform decision making on a range of policy and health services delivery issues across the continuum of care. Consistency in terminology, a consensus definition and more guidance on ES design may help provide structure for researchers and other stakeholders, and ultimately advance ES as a methodological approach. A working definition of ES in a health services delivery context is presented.

Background: Patient and family engagement is increasingly recognized in the care of children with complex health conditions. Through the implementation of Patient and Family Advisory Councils (PFACs), health-care institutions are working to improve patient care by nurturing partnerships among patients/families, managers, and clinicians. Despite the potential for PFACs, empirical research about their implementation remains scarce. Objective: To address this gap, this study explored the recruitment, retention, and implementation strategies used by Canadian PFACs. Design: We used a qualitative descriptive design. Participants: We interviewed 10 spokespersons from Canadian PFACs. Results: We found themes within 2 stages of implementation. The first stage, getting PFACs started, included 4 themes: (1) using evolving recruitment methods, (2) preparing for effective participation, (3) ensuring diversity within PFACs, and (4) preparing terms of reference. The second stage involved strategies to support ongoing PFACs implementation and included 1 overall theme: facilitating optimal PFACs participation. The underlying link between themes was that establishing/maintaining PFACs is an ongoing learning curve. Conclusion: Our findings have the potential to inform new and existing PFACs.

The number of Canadian children and youth with complex care needs has continued to rise, and their need for resources across all sectors can be extensive. Navigating the maze of resources and services can create confusion and impact how care is delivered and integrated. Patient navigators can help support and guide patients and caregivers through the healthcare system by matching their needs to appropriate resources with the aim to improve access and promote the integration of care. This qualitative study explored caregivers’ experiences caring for a child or youth with complex care needs, and their experiences and satisfaction as clients of a patient navigation centre. Participants included 22 clients from NaviCare/SoinsNavi, a patient navigation centre in Canada for children and youth with complex care needs and their families. Three main themes emerged: 1) caring for a child or youth with complex care needs, 2) navigating the system, and 3) the value of patient navigation. Findings suggest caregivers caring for a child or youth with complex care needs often feel overwhelmed, fearful, and alone; yet, patient navigation can be an innovative approach to support their needs through facilitating more convenient and integrated care, and improving access to education, supports, and resources.

Introduction Children and youth with complex care needs (CCNs) and their families experience many care transitions over their lifespan and are consequently vulnerable to the discontinuity or gaps in care that can occur during these transitions. Transitional care programmes, broadly defined as one or more intervention(s) or service(s) that aim to improve continuity of care, are increasingly being developed to address transitions in care for children and youth with CCNs. However, this literature has not yet been systematically examined at a comprehensive level. The purpose of this scoping review is to map the range of programmes that support transitions in care for children and youth with CCNs and their families during two phases of their lifespan: (1) up to the age of 19 years (not including their transition to adult healthcare) and (2) when transitioning from paediatric to adult healthcare.Methods and analysis The Joanna Briggs Institute methodology for scoping reviews (ScR) will be used for the proposed scoping review. ScR are a type of knowledge synthesis that are useful for addressing exploratory research questions that aim to map key concepts and types of evidence on a topic and can be used to organise what is known about the phenomena. A preliminary search of PubMed was conducted in December 2018.Ethics and dissemination Ethical approval is not required where this study is a review of the published and publicly reported literature. The research team’s advisory council will develop a research dissemination strategy with goals, target audiences, expertise/leadership, resources and deadlines to maximise project outputs. The end-of-grant activities will be used to raise awareness, promote action and inform future research, policy and practice on this topic.

Children and youth with complex care needs require more and varied healthcare services than the average population, as well as a high degree of coordinated care. Evidence has shown that these individuals and their families have better outcomes if they have access to integrated care. Patient navigation can serve as a novel approach to improve the integration of care for individuals with complex care needs in an increasingly fragmented system. NaviCare/SoinsNavi is an example of a navigation centre for children and youth with complex care needs, their families, and the care team. This research-based service is aimed at facilitating more convenient and integrated care using a personalized family-centred approach. NaviCare/SoinsNavi employs two patient navigators who work with clients to formulate and prioritize goals based on their unmet needs. The centre serves as a living laboratory, which provides researchers, knowledge users, and clients a 'real life setting' where innovative ideas can be explored, evaluated, modified as needed throughout the research process, and moved into policy in an efficient manner. Patient navigation programs can contribute to decreasing fragmentation, improving access, and promoting integrated care across disciplines, settings, and sectors for individuals across the lifespan.

Introduction The environmental scan has been described as an important tool to inform decision-making on policy, planning and programme development in the healthcare sector. Despite the wide adoption of environmental scans, there is no consensus on a working definition within the health services delivery context and methodological guidance on the design and implementation of this approach is lacking in the literature. The objectives of this study are to map the extent, range and nature of evidence that describe the definitions, characteristics, conceptualisations, theoretical underpinnings, study limitations and other features of the environmental scan in the health services delivery literature and to propose a working definition specific to this context.Methods and analysis This protocol describes a scoping review based on the methodology outlined by Khalil and colleagues. A comprehensive search strategy was developed by experienced health science librarians in consultation with the research team. A Peer Review of Electronic Search Strategies (PRESS) was completed. Two reviewers will independently screen titles, abstracts and full-text articles and select studies meeting the inclusion criteria from seven electronic databases: Academic Search Premier, Canadian Business & Current Affairs (CBCA), CINAHL, ERIC, Embase, MEDLINE and PsycINFO. The grey literature and reference lists of included articles will also be searched. The data will be analysed and presented in tabular format, and will include a descriptive numerical summary as well as a qualitative thematic analysis.Ethics and dissemination This protocol provides an audit trail for a scoping review that will advance understanding about the environmental scan and its application in the health services delivery context. The review will propose a working definition and will inform future research to explore the development of a conceptual framework in this context. Findings will be disseminated through a peer-reviewed journal and conference presentations. The scoping review does not require ethics approval.

The aim of this study was to explore the perceptions, experiences, and behaviors of health care providers (HCPs) after the implementation of a comprehensive smoke-free policy. This qualitative descriptive study, using semi-structured interviews, was conducted with 28 HCPs working in a Canadian hospital. Four overarching themes emerged from the analysis including (a) greater support for tobacco reduction, (b) enhanced patient care and interactions, (c) improved staff morale, and (d) some barriers still exist. The main findings suggest a comprehensive smoke-free hospital environment can strengthen the tobacco-free workplace culture within a hospital setting among HCPs where support for tobacco reduction is amplified, patient care and interactions regarding tobacco dependence are improved, and staff morale is enhanced. While there are still some challenging barriers as well as opportunities for improvements, the implementation of a comprehensive smoke-free policy heightened the call-to-action among HCPs to take a more active role in tobacco reduction.

Advances have been made to improve health care for children with complex health conditions (CCHCs); however, little is known of the needs of these children and their families in the Canadian context. In this article, we describe our Canadian Institutes of Health Research funded Quick Strike protocol, a mixed-methods multisite research project that explored CCHC and their families in two Canadian provinces. The aims were (a) to describe and define CCHC, (b) to understand the needs of CCHC and their families, (c) to identify gaps and barriers to services for this population, and (d) to adapt and test the application of a computerized algorithm to yield information on CCHC. The mixed-methods design was comprised of four components: three qualitative and one quantitative. We describe the components of this project and outline the methods and procedures of data collection and analysis for each component. One of the main sources of data was interviews from 121 stakeholders, which included CCHC and family members, as well as health, social, and education professionals. This Quick Strike project was designed to engage stakeholders and the public with integrated knowledge translation threaded as a core element throughout the research process. Multiple strategies were used to validate and disseminate early findings from the research. As we outline in this article, this research project provided the foundation for one innovative service model of care, NaviCare/SoinsNavi, and spawned a number of additional outcomes such as a secondary analysis of the data to describe interprofessional collaboration for CCHC.