Enhancing patient-oriented research training: participant perceptions of an online course.

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.

In the past, patients were only involved in health research as study subjects and were excluded from membership on the research team. Today, it is the norm to involve patients and other non-researchers, such as clinicians and policy makers, as full, active partners in health research projects. This approach is called patient-oriented research, and is regarded as essential for good health care. In 2016, the Canadian Institutes of Health Research (CIHR) developed a course in patient-oriented research that helps people develop the skills they need to work together on a team with researchers, patients, caregivers, care providers, policy makers, and others. However, logistical challenges such as travel distance and scheduling conflicts may create barriers to in-person participation. Our research team adapted CIHR's course in patient-oriented research for online delivery, which can help overcome these challenges and provide additional educational benefits. We delivered the online course seven times to diverse groups of participants from across Canada, including researchers, patients, clinicians, and policy makers. A total of 189 participants completed at least one of the three course modules. In this article, we examine the results of 89 completed feedback surveys (78 from learners and 11 from facilitators). Overall, the feedback was very positive, with participants appreciating the opportunity to learn from real patient experiences in an inclusive environment. We also received suggestions for improvement, such as reducing pre-work and using more concrete examples, which will be incorporated into future versions of the course. This evaluation shows that this course was successfully adapted for online delivery and offers a valuable opportunity for building skills in patient-oriented research.

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.

Patient navigation programs for people with dementia, their caregivers, and members of the care team: a scoping review.

OBJECTIVE: The main objective of this review was to map the literature on the characteristics of patient navigation programs for people with dementia, their caregivers, and members of the care team across all settings. The secondary objective was to map the literature on the barriers and facilitators for implementing and delivering such patient navigation programs. INTRODUCTION: People with dementia have individualized needs that change according to the stage of their condition. They often face fragmented and uncoordinated care when seeking support to address these needs. Patient navigation may be one way to help people with dementia access better care. Patient navigation is a model of care that aims to guide people through the health care system, matching their unmet needs to appropriate resources, services, and programs. Organizing the available information on this topic will present a clearer picture of how patient navigation programs work. INCLUSION CRITERIA: This review focused on the characteristics of patient navigation programs for people living with dementia, their caregivers, and the members of the care team. It excluded programs not explicitly focused on dementia. It included patient navigation across all settings, delivered in all formats, and administered by all types of navigators if the programs aligned with this review's definition of patient navigation. This review excluded case management programs. METHODS: This review was conducted in accordance with JBI methodology for scoping reviews. MEDLINE, CINAHL, APA PsycINFO, Embase, and ProQuest Nursing and Allied Health databases were searched for published full-text articles. A gray literature search was also conducted. Two independent reviewers screened articles for relevance against the inclusion criteria. The results are presented in a Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) flow diagram, and the extracted data are presented narratively and in tabular format. RESULTS: Thirty-nine articles describing 20 programs were included in this review. The majority of these articles were published between 2015 and 2020, and based out of the United States. The types of sources included randomized controlled trials, quasi-experimental studies, and qualitative exploratory studies, among others. All programs provided some form of referral or linkage to other services or resources. Most dementia navigation programs included an interdisciplinary team, and most programs were community-based. There was no consistent patient navigator title or standard delivery method. Commonly reported barriers to implementing and delivering these programs were navigator burnout and a lack of coordination between stakeholders. Commonly reported facilitators were collaboration, communication, and formal partnerships between key stakeholders, as well as accessible and flexible program delivery models. CONCLUSIONS: This review demonstrates variety and flexibility in the types of services patient navigation programs provided, as well as in the modes of service delivery and in navigator title. This information may be useful for individuals and organizations looking to implement their own programs in the future. It also provides a framework for future systematic reviews that seek to evaluate the effectiveness or efficacy of dementia navigation programs.

Improving the transition from paediatric to adult healthcare: a scoping review on the recommendations of young adults with lived experience.

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.

Hospital-based patient navigation programmes for patients who experience injury-related trauma and their caregivers: a scoping review protocol.

INTRODUCTION: Patients who experience injury-related trauma tend to have complex care needs and often require support from many different care providers. Many patients experience gaps in care while in the hospital and during transitions in care. Providing access to integrated care can improve outcomes for these patients. Patient navigation is one approach to improving the integration of care and proactively supporting patients and their caregivers as they navigate the healthcare system. The objective of this scoping review is to map the literature on the characteristics and impact of hospital-based patient navigation programmes that support patients who experience injury-related trauma and their caregivers. METHODS AND ANALYSIS: This review will be conducted in accordance with Joanna Briggs Institute methodology for scoping reviews. The review will include primary research studies, unpublished studies and evaluation reports related to patient navigation programmes for injury-related trauma in hospital settings. The databases to be searched will include CINAHL (EBSCO), EMBASE (Elsevier), ProQuest Nursing & Allied Health, PsycINFO (EBSCO) and MEDLINE (Ovid). Two independent reviewers will screen articles for relevance against the inclusion criteria. Results will be presented in a Preferred Reporting Items for Systematic Reviews and Meta-analyses for Scoping Reviews (PRISMA-ScR) flow diagram and follow the PRISMA-ScR checklist. The extracted data will be presented both tabularly and narratively. ETHICS AND DISSEMINATION: Ethics approval is not required, as the scoping review will synthesise information from publicly available material. To disseminate the findings of this review, the authors will submit the results for publication in a medical or health sciences journal, present at relevant conferences and use other knowledge translation strategies to reach diverse stakeholders (eg, host webinars, share infographics).

Caregiver experiences with transitions from pediatric to adult healthcare for children with complex care needs.

BACKGROUND: Caring for a youth with complex care needs (CCN) who is transitioning from paediatric to adult healthcare can produce many challenges. For example, caregivers must often manage their youth's care at home, coordinate care and advocate for their youth. Experiences of fragmented and uncoordinated care often result in caregivers feeling ill-prepared and uncertain about the transition process. The current study explores caregiver experiences with the transition from paediatric to adult healthcare for youth with CCN in a semi-rural Canadian province. METHODS: This study used a cross-sectional qualitative descriptive design, involving semi-structured interviews with caregivers of youth with CCN who were preparing for, in the process of, or completed a transition from paediatric to adult healthcare within the province of New Brunswick, Canada. Thematic analysis focused on describing caregiver experiences with the transition from paediatric to adult healthcare. RESULTS: Seventeen caregivers completed interviews for this study. Four key themes emerged relating to caregiver experiences with the transition from paediatric to adult healthcare for these youth: (1) lack of caregiver support, (2) lack of continuity of care, (3) need for collaborative care and (4) difficulty navigating transition. CONCLUSION: There is a clear need to address the challenges experienced by youth with CCN and their caregivers throughout the transition from paediatric to adult healthcare. An effective transition strategy should involve early and coordinated planning between the paediatric and adult care team; continued communication across the care team throughout the transition process; and coordination among health, education and social services.

Professional representation of conversational agents for health care: a scoping review protocol.

OBJECTIVE: The purpose of this scoping review is to examine the professional representation of conversational agents that are used for health care. Professional characteristics associated with these agents will be identified, and the prevalence of these characteristics will be determined. INTRODUCTION: Conversational agents that are used for health care lack the qualifications and capabilities of real health professionals, but this fact may not be clear to some patients and health seekers. This problem may be exacerbated when conversational agents are described as health professionals or are given professional titles or appearances. To date, the professional representation of conversational agents that are used for health care has received little attention in the literature. INCLUSION CRITERIA: This review will include scholarly publications on conversational agents that are used for health care, particularly descriptive/developmental case studies and intervention/evaluation studies. This review will consider conversational agents designed for patients and health seekers, but not health professionals or trainees. Agents addressing physical and/or mental health will be considered. METHODS: This review will be conducted in accordance with JBI methodology for scoping reviews. The databases to be searched will include MEDLINE (PubMed), Embase (Elsevier), CINAHL with Full Text (EBSCO), Scopus (Elsevier), Web of Science (Clarivate), ACM Guide to Computing Literature (ACM Digital Library), and IEEE Xplore (IEEE). The extracted data will include study characteristics, basic characteristics of the conversational agent, and characteristics relating to the professional representation of the conversational agent. The extracted data will be presented in tabular format and summarized using frequency analysis. These results will be accompanied by a narrative summary.

Patient navigation programs for people with dementia, their caregivers, and members of their care team: a scoping review protocol.

OBJECTIVE: The objective of this review is to map the literature on the characteristics, barriers, and faciliators of patient navigation programs for people with dementia, their caregivers, and/or members of their care team across all settings. INTRODUCTION: Patient navigation refers to a model of care that helps guide people through the health care system, matching their unmet needs to appropriate resources, services, and programs. Patient navigation may be beneficial to people with dementia because this is a population that frequently faces fragmented and uncoordinated care and has individualized care needs. INCLUSION CRITERIA: This review will focus on patient navigation programs for people living with dementia, their caregivers, and/or members of their care team, while excluding programs that do not explicitly focus on dementia. It will include patient navigation across all settings, delivered in all formats, and administered by all types of navigators, as long as the program is aligned with this article's definition of patient navigation, while excluding case management. METHODS: This review will be conducted in accordance with JBI methodology for scoping reviews. The MEDLINE, CINAHL, PsycINFO, Embase, and ProQuest Nursing and Allied Health databases will be searched for published articles. Two independent reviewers will screen articles for relevance against the inclusion criteria. The results will be presented in a Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews flow diagram, and the extracted data will be presented in both tabular and narrative format.

Experiences of Clients in Three Types of Methadone Maintenance Therapy in an Atlantic Canadian City: A Qualitative Study.

BACKGROUND: Methadone maintenance therapy remains the most common form of substitution therapy for opioid use disorder in Canada. Effectiveness of methadone maintenance therapy has been established, but recently newer treatment delivery models have emerged. Differences across these treatment models have not been examined. PURPOSE: This descriptive qualitative study used semi-structured interviews to assess client experiences in three methadone maintenance therapy treatment delivery models: (a) comprehensive programs, (b) low-threshold/high-tolerance programs, and (c) fee-for-service programs. METHODS: A total of 32 participants were recruited from methadone maintenance therapy clinics in an Atlantic Canadian city and grouped into three models of care (na = 9, nb = 11, nc = 12). Content analysis was performed on interview data to assess the frequency of relevant themes in the data. RESULTS: Participants from all groups stressed the importance of supportive staff and having access to some form of counselling. However, low-threshold/high-tolerance and fee-for-service clients voiced a need for more formal counselling and programming at their clinics. Methadone was reported as the most helpful aspect of the methadone maintenance therapy programs; however, participants also expressed negative views about the substance. CONCLUSIONS: These findings have important implications for the development and implementation of methadone maintenance therapy, specifically pertaining to further integration of addiction and mental health services.

Perceived current and ideal body size in female undergraduates.

Body image dissatisfaction and disordered eating attitudes and behaviors are pervasive problems in Western society, particularly for females. The female "thin-ideal" is a potent contributor to the growing discontent with the female body and research has shown that even females who are normal or underweight, perceive themselves as overweight. The goal of the current study was to examine correlates of body image satisfaction and the perception of the female body. One hundred and sixty six female undergraduates (Mean Age=21.40 years) completed self-report measures pertaining to disordered eating (EAT-26) and body dissatisfaction (BIQ and ABS). Body image perception and satisfaction were measured using ratings of female bodies on a weight perception scale (PFRS). Overall, disordered eating was related to a lower ideal body size and greater body dissatisfaction. In support of previous research, the most common ideal female body had a BMI categorized as underweight. Although females in the current sample reported an ideal that was smaller than their current size, participants underestimated their current body size, which, given the amount of dieting and weight pressure in present Western society, seems counterintuitive. It is possible that thin ideal portrayed in the media is increasingly different from and at odds with the average female body.