Future directions for patient engagement in research: a participatory workshop with Canadian patient partners and academic researchers.

BACKGROUND: Patient engagement in research (also commonly referred to as patient or patient and public involvement in research) strives to transform health research wherein patients (including caregivers and the public) are regularly and actively engaged as multidisciplinary research team members (i.e. patient partners) working jointly towards improved health outcomes and an enhanced healthcare system. To support its mindful evolution into a staple of health research, this participatory study aimed to identify future directions for Canadian patient engagement in research and discusses its findings in the context of the international literature. METHODS: The study met its aim through a multi-meeting pan-Canadian virtual workshop. Participants (n = 30) included Strategy for Patient-Oriented Research-funded academic researchers and patient partners identified through a publicly available database, personal and professional networks and social media. All spoke English, could access the workshop virtually, and provided written informed consent. The workshop was composed of four, 1.5-3-h virtual meetings wherein participants discussed the current and preferred future states of Canadian patient engagement in research. Workshop discussions (i.e. data) were video and audio recorded. Themes were generated through an iterative process of inductive thematic analysis that occurred concurrently with the multi-week workshop. RESULTS: Our participatory and iterative process identified 10 targetable areas of focus for the future of Canadian patient engagement in research. Five were categorized as system-level (systemic integration; academic culture; engagement networks; funding models; compensation models), one as researcher-level (engagement processes), and four crossed both levels (awareness; diversity and recruitment; training, tools and education; evaluation and impact). System level targetable areas called for reshaping the patient engagement ecosystem to create a legitimized and supportive space for patient engagement to be a staple component of a learning health system. Researcher level targetable areas called for academic researchers and patient partners to collaboratively generate evidence and apply knowledge to inform values and behaviours necessary to foster and sustain supportive health research spaces that are accessible to all. CONCLUSIONS: Future directions for Canadian patient engagement in research span 10 interconnected targetable areas that require strong leadership and joint action between patient partners, academic researchers, and health and research institutions if patient engagement is to become a ubiquitous component of a learning health system.

A strengths-based qualitative exploration of critical care nurses' reasons for remaining in critical care.

AIMS: Globally, the nursing shortage is a growing concern. Much of the research on retention of nurses focuses on the experience of those who left positions. In this study, we set out to listen to critical care nurses (CCRNs) who have chosen to remain in their positions to understand the factors retaining them in critical care. DESIGN: This interpretive descriptive study was guided by the following research question: 'what factors influence CCRN's decision to continue to work in critical care?' METHODS: Digitally recorded interviews and a focus group were conducted between July 2022 and January 2023 using a semi-structured, strengths-based interview guide with CCRNs from three critical care units at a tertiary hospital in a city in a central Canadian province. Transcribed interviews were analysed using open, axial and selective coding and constant comparative analysis. RESULTS: Twenty-two CCRNs participated in interviews and three in a focus group. The theme of Respect, demonstrated through the interconnected concepts of Working to Full Scope, Team, Rotations and Compensation was identified. Working to Full Scope was described as providing nursing care aligned with how each nurse envisions what nursing is. Being part of a Team led by strong nurse leaders that provides opportunities and supports the sharing of their perspectives was also found. Respect was also found to be demonstrated through Rotations that recognize that work is one part of these nurses' lives. Compensation that reflects the increased education, knowledge and skills required in critical care was the final concept of Respect. CONCLUSION: Organizations should focus their efforts across the identified concepts to demonstrate Respect for CCRNs and retain them. IMPLICATIONS FOR PRACTICE: The findings of this study provide ways to support the retention of CCRNs. IMPACT: This research will have an impact on nursing leaders by providing tangible ways to retain CCRNs. REPORTING METHOD: Reporting of this work was guided by the Standards for Reporting Qualitative Research. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

A critical exploration of nurses' perceptions of access to oncology care among Indigenous peoples: Results of a national survey.

Inequities in access to oncology care among Indigenous peoples in Canada are well documented. Access to oncology care is mediated by a range of factors; however, emerging evidence suggests that healthcare providers, including nurses, play a significant role in shaping healthcare access. The purpose of this study was to critically examine access to oncology care among Indigenous peoples in Canada from the perspective of oncology nurses. Guided by postcolonial theoretical perspectives, interpretive descriptive and critical discourse analysis methodologies informed study design and data analysis. Oncology nurses were recruited from across Canada to complete an online survey (n = 78). Nurses identified a range of barriers experienced by Indigenous peoples when accessing oncology care, yet located these barriers primarily at the individual and systems levels. Nurses perceived themselves as mediators of access to oncology care; however, their efforts to facilitate access to care were constrained by the dominance of biomedicine within healthcare. Nurses' constructions of access to oncology care highlight the embedded narrative of individualism within nursing practice and the relative invisibility of racism as a determinant of equitable access to care among Indigenous peoples. This suggests a need for oncology nurses to better understand and incorporate structural determinants of health perspectives.

Nurses as agents of disruption: Operationalizing a framework to redress inequities in healthcare access among Indigenous Peoples.

Health equity is a global concern. Although health equity extends far beyond the equitable distribution of healthcare, equitable access to healthcare is essential to the achievement of health equity. In Canada, Indigenous Peoples experience inequities in health and healthcare access. Cultural safety and trauma- and violence-informed care have been proposed as models of care to improve healthcare access, yet practitioners lack guidance on how to implement these models. In this paper, we build upon an existing framework of equity-oriented care for primary healthcare settings by proposing strategies to guide nurses in operationalizing cultural safety and trauma- and violence-informed care into nursing practice at the individual level. This component is one strategy to redress inequitable access to care among Indigenous Peoples in Canada. We conceptualize barriers to accessing healthcare as intrapersonal, interpersonal, and structural. We then define three domains for nursing action: practicing reflexivity, prioritizing relationships, and considering the context. We have applied this expanded framework within the context of Indigenous Peoples in Canada as a way of illustrating specific concepts and focusing our argument; however, this framework is relevant to other groups experiencing marginalizing conditions and inequitable access to healthcare, and thus is applicable to many areas of nursing practice.

A Scoping Review of Foci, Trends, and Gaps in Reviews of Tobacco Control Research.

INTRODUCTION: The burden of disease associated with tobacco use has prompted a substantial increase in tobacco-related research, but the breadth of this literature has not been comprehensively examined. This review examines the nature of the research addressing the action areas in World Health Organization's Framework Convention on Tobacco Control (FCTC), the populations targeted and how equity-related concepts are integrated. METHOD: A scoping review of published reviews addressing tobacco control within the primary prevention domain. We searched PubMed, Scopus, Cumulative Index to Nursing and Allied Health Literature, Cochrane Library, Educational Resources Information Centre, and PsycInfo from 2004 to 2018. RESULTS: The scoping review of reviews offered a "birds-eye-view" of the tobacco control literature. Within the 681 reviews meeting inclusion criteria, there was a strong focus on smoking cessation targeting individuals; less attention has been given to product regulation, packaging, and labeling or sales to minors. Equity-related concepts were addressed in 167/681 (24.5%); few were focused on addressing inequity through structural and systemic root causes. CONCLUSION: This analysis of foci, trends, and gaps in the research pursuant to the FCTC illustrated the particular action areas and populations most frequently addressed in tobacco control research. Further research is needed to address: (1) underlying social influences, (2) particular action areas and with specific populations, and (3) sustained tobacco use through the influence of novel marketing and product innovations by tobacco industry. IMPLICATIONS: This scoping review of the breadth of tobacco control research reviews enables a better understanding of which action areas and target populations have been addressed in the research. Our findings alongside recommendations from other reviews suggest prioritizing further research to support policymaking and considering the role of the tobacco industry in circumventing tobacco control efforts. The large amount of research targeting individual cessation would suggest there is a need to move beyond a focus on individual choice and decontextualized behaviors. Also, given the majority of reviews that simply recognize or describe disparity, further research that integrates equity and targets various forms of social exclusion and discrimination is needed and may benefit from working in collaboration with communities where programs can be tailored to need and context.

Comparing cancer incidence, stage at diagnosis and outcomes of First Nations and all other Manitobans: a retrospective analysis.

BACKGROUND: Globally, epidemiological evidence suggests cancer incidence and outcomes among Indigenous peoples are a growing concern. Although historically cancer among First Nations (FN) peoples in Canada was relatively unknown, recent epidemiological evidence reveals a widening of cancer related disparities. However evidence at the population level is limited. The aim of this study was to explore cancer incidence, stage at diagnosis, and outcomes among status FN peoples in comparison with all other Manitobans (AOM). METHODS: All cancers diagnosed between April 1, 2004 and March 31, 2011 were linked with the Indian Registry System and five provincial healthcare databases to compare differences in characteristics, cancer incidence, and stage at diagnosis and mortality of the FN and AOM cohorts. Cox proportional hazard regression models were used to examine mortality. RESULTS: The FN cohort was significantly younger, with higher comorbidities than AOM. A higher proportion of FN people were diagnosed with cancer at stages III (18.7% vs. 15.4%) and IV (22.4% vs. 19.9%). Cancer incidence was significantly lower in the FN cohort, however, there were no significant differences between the two cohorts after adjusting for age, sex, income and area of residence. No significant trends in cancer incidence were identified in either cohort over time. Mortality was generally higher in the FN cohort. CONCLUSIONS: Despite similar cancer incidence, FN peoples in Manitoba experience poorer survival. The underlying causes of these disparities are not yet understood, particularly in relation to the impact of colonization and other determinants of health.

Tobacco-Nicotine Education and Training for Health-Care Professional Students and Practitioners: A Systematic Review.

Introduction: The objective of this systematic review was to investigate what education and training characteristics prepares and supports health-care professionals (HCPs) in the delivery of competent and effective care to clients who use tobacco-nicotine. Aims and Methods: A search of eight bibliographic databases for English-language peer-reviewed publications from January 2006 to March 2015. Studies were included if they met the a priori inclusion criteria, which consisted of: (1) quantitative study design and (2) focus on tobacco-nicotine education or training for HCP students and practitioners. All studies were independently screened for inclusion by two reviewers. Data from included studies were extracted for study characteristics and key outcomes then critically appraised for methodological quality. Results: Fifty-nine studies were included for narrative synthesis. Two categories emerged: (1) curriculum characteristics (n = 10) and (2) education and training interventions (n = 49). Included curriculum studies identified the following themes: content, intensity, competencies evaluation, and barriers. Study findings about education and training interventions were grouped by level of education (prelicensure, post-licensure, and faculty training), teaching modality, health discipline, and the associated HCP and client outcomes. Conclusions: This comprehensive review suggests that there is a lack of consistency in HCP tobacco-nicotine education and training characteristics. This paper provides valuable categorization of the most frequently utilized components of academic curriculum and discusses the interventions in relation to HCP and client outcomes. Gaps in the literature are highlighted, and the need for standardization of tobacco-nicotine training competencies and evaluation is discussed. Future research investigating the most effective approaches to training is needed. Implications: This systematic review summarizes existing tobacco-related curriculum components (content, intensity, competency evaluation, and barriers) and training interventions for health-care professionals worldwide and demonstrates that they are associated with positive health-care professional outcomes (knowledge, attitudes, behaviors, and skills) and client outcomes (quit attempts and smoking abstinence).

Understanding access to healthcare among Indigenous peoples: A comparative analysis of biomedical and postcolonial perspectives.

As nursing professionals, we believe access to healthcare is fundamental to health and that it is a determinant of health. Therefore, evidence suggesting access to healthcare is problematic for many Indigenous peoples is concerning. While biomedical perspectives underlie our current understanding of access, considering alternate perspectives could expand our awareness of and ability to address this issue. In this paper, we critique how access to healthcare is understood through a biomedical lens, how a postcolonial theoretical lens can extend that understanding, and the subsequent implications this alternative view raises for the nursing profession. Drawing on peer-reviewed published and gray literature concerning healthcare access and Indigenous peoples to inform this critique, we focus on the underlying theoretical lens shaping our current understanding of access. A postcolonial analysis provides a way of understanding healthcare as a social space and social relationship, presenting a unique perspective on access to healthcare. The novelty of this finding is of particular importance for the profession of nursing, as we are well situated to influence these social aspects, improving access to healthcare services broadly, and among Indigenous peoples specifically.

Patient tobacco use in optometric practice: a Canada-wide study.

PURPOSE: A national census survey of optometrists in Canada measured knowledge of ocular diseases associated with smoking cigarettes and current practice behaviors related to addressing tobacco use with patients, including prevention and cessation. Optometrists were also asked to identify tools to assist addressing tobacco use with patients. METHODS: An online bilingual (English/French) survey was developed and an e-mail with a link to the survey was sent to all 4528 optometrists registered in Canada. No participation incentives were provided. Frequency data were tabulated for survey items. Logistic regression models were fit to understand respondent characteristics associated with discussing tobacco use prevention and cessation with patients. RESULTS: The response rate was 19% (850 responses). Almost all respondents (98%) believed that smoking cigarettes was a risk factor for developing age-related macular degeneration; approximately half (55%) assessed the smoking status of patients during their initial visit; 7% reported that they discussed the benefits of tobacco use prevention with patients younger than 19 years; and 33% reported that they always or regularly assess their patients' interest in quitting smoking. Respondents who completed the survey in English were more likely (odds ratio, 2.4; 95% confidence interval, 1.01 to 5.65) to deliver prevention messaging, compared with respondents who completed the survey in French. Male respondents were less likely to assess patients' interest in quitting (odds ratio, 0.7; 95% confidence interval, 0.50 to 0.97) than female respondents. Most respondents (90%) were interested in a continuing education program about the impact of smoking on vision and eye health as well as strategies for discussing tobacco cessation and prevention. CONCLUSIONS: Optometrists are aware of the impact of smoking on ocular health; however, most respondents do not systematically engage in tobacco use prevention and cessation practices. Providing optometrists with tools, including continuing education, may help support patient conversations about the risks of tobacco use and improve public health.

Exploring arts-based knowledge translation: sharing research findings through performing the patterns, rehearsing the results, staging the synthesis.

BACKGROUND: Cultivation of knowledge translation (KT) strategies that actively engage health professionals in critical reflection of their practice and research-based evidence are imperative to address the research-practice gap. While research-based evidence is exponentially growing, our ability to facilitate uptake by nurses and other health professionals has not kept pace. Innovative approaches that extend epistemological bias beyond a singular standpoint of postpositivism, such as the utilization of arts-based methods, expand the possibility to address the complexities of context, engage audience members, promote dissemination within communities of practice, and foster new audiences interested in research findings. AIM: In this paper, we address the importance of adopting a social constructivist epistemological stance to facilitate knowledge translation to diverse audiences, explore various arts-based knowledge translation (ABKT) strategies, and open a dialogue concerning evaluative tenets of ABKT. DISCUSSION: ABKT utilizes various art forms to disseminate research knowledge to diverse audiences and promote evidence-informed practice. ABKT initiatives translate knowledge not based upon a linear model, which views knowledge as an objective entity, but rather operate from the premise that knowledge is socially situated, which demands acknowledging and engaging the learner within their context. Theatre, dance, photography, and poetry are art forms that are commonly used to communicate research findings to diverse audiences. Given the emerging interest and importance of utilizing this KT strategy situated within a social constructivist epistemology, potential challenges and plausible evaluative criteria specific to ABKT are presented. CONCLUSION: ABKT is an emerging KT strategy that is grounded in social constructivist epistemological tenets, and holds potential for meaningfully sharing new research knowledge with diverse audiences. LINKING EVIDENCE TO ACTION: ABKT is an innovative and synergistic approach to traditional dissemination strategies. This creative KT approach is emerging as potent transformational learning tools that are congruent with the relational nature of nursing practice. ABKT facilitates learning about new research findings in an engaging and critical reflective manner that promotes learning within communities of practice.

Gender inclusive and affirming practices across undergraduate nursing curriculum: A scoping review.

OBJECTIVES: There are increasing calls for gender affirming care, yet there remains uncertainty as to how nursing education is preparing students. The purpose of this scoping review was to map gender inclusive and affirming practices across the three levels of curriculum (formal, informal, and hidden) in the education of undergraduate nursing students. This novel approach allows consideration of transgender and gender diverse nurses (students and educators). DESIGN: Scoping review as per Arksey and O'Malley and Levac et al. DATA SOURCES: Four databases (Medline, Embase, CINAHL, and Scopus) were searched for literature that addressed transgender and gender diversity, discussed at any level of curriculum. In addition, we searched key schools of nursing websites for inclusion of gender inclusive and affirming practices in documents and faculty profiles. We limited our search of peer-reviewed articles and websites to those in English, from Canada and the USA. REVIEW METHODS: The article search and extraction were conducted by two independent reviewers while the school of nursing websites were searched by the lead author. RESULTS: Forty-seven articles were included and categorized as either (a) Doing (n = 32) (formal, intervention-based) or (b) Thinking (n = 15) (discussion- or evaluation-based) gender inclusive and affirming practices. Twenty-five of the intervention-based articles were single-instance occurrences of learning, primarily by simulation (n = 17). Recommendations at each level of curriculum are offered. Of the 22 schools of nursing websites searched, less than 2 % of faculty profiles list pronouns. CONCLUSIONS: While there has been an uptake of formal interventions on gender affirming care there remains a gap in addressing gender inclusive and affirming practices at the informal and hidden curriculum levels. Gender inclusive and affirming practices across all levels of nursing education can help advance culturally safe practices for TGD patients and experiences for TGD nurses and students.

Effects of household socialization on youth susceptibility to smoke: differences between youth age groups and trends over time.

A Canadian biennial youth survey facilitated repeating investigation of susceptibility to smoke and household socialization. We operationalized susceptibility to smoke by 3 levels on the basis of intention and behavior. Variables consistently predicting greater susceptibility across time and age groups were sibling smoking, household restrictions, and vehicle smoke exposure. Gender was predictive among older youths. Household restrictions and emerging legislation to ban smoking in vehicles with youth passengers provide protection against secondhand smoke exposure and sustained resolve to remain smoke-free.

Gender-affirming care in undergraduate nursing education: a scoping review protocol.

INTRODUCTION: Transgender and gender-diverse (TGD) people face a multitude of barriers to safe, accessible healthcare. One way to overcome access inequities is through the provision of gender-affirming care. Gender-affirming care is culturally safe and engaged care that values TGD identities and is focused on depathologising TGD people. Additionally, gender-affirming care encompasses awareness and support of TGD individuals as unique beings, including supporting gender-affirming medical goals for those who are interested. The discipline of nursing is well situated to advocate for gender-affirming care, however, receives little undergraduate education in the subject. Undergraduate schools of nursing (including faculty and curriculum) are in a crucial position to implement gender-affirming care, though how they have done this is not widely known. Our scoping review aims to understand how Canadian and US undergraduate schools of nursing teach and integrate gender-affirming education. METHODS AND ANALYSIS: Our scoping review will follow the six stages by Arksey and O'Malley and the advancements by Levac et al, reported on as per the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for scoping reviews. The review will be completed in 2023, with the database searches carried out in spring 2023, followed by screening and analysis. ETHICS AND DISSEMINATION: Ethics approval is not required for this protocol. To aid in knowledge translation, a visual representation of the findings will be created. Results from the final scoping review will be published in a peer-reviewed journal, promoted on social media to schools of nursing, and presented at conferences and seminars. PROTOCOL REGISTRATION NUMBER: Open Science Framework (https://doi.org/10.17605/OSF.IO/Q68BD).

Exploring patient and caregiver perceptions of the meaning of the patient partner role: a qualitative study.

BACKGROUND: The re-conceptualization of patients' and caregivers' roles in research from study participants to co-researchers ("patient partners") has led to growing pains within and outside the research community, such as how to effectively engage patients in research and as part of interdisciplinary teams. To support the growth of more successful research partnerships by developing a shared understanding of how patient partners conceptualize and contribute to their role, this study aimed to explore patient partners' motivations for engagement and understanding of their role. METHODS: We conducted semi-structured interviews with participants (n = 13) of an online survey of activities and impacts of patient engagement in Strategy for Patient-Oriented Research projects. Eligibility criteria included being a patient partner that indicated interest in interview participation upon survey completion, the ability to read/write in English and provide informed consent. Data were analyzed thematically using an inductive, codebook thematic analysis. RESULTS: Illuminating the lived/living patient and caregiver experience was central to how most patient partners conceptualized the role in terms of its definition, purpose, value, and responsibilities. Participants also identified four additional categories of motivations for becoming a patient partner and contributions that patient partners make to research that build upon and are in addition to sharing their lived/living experiences. Lastly, participants highlighted important connotations of the term patient partner, including temporal and context-specific considerations for the term "patient" and what "partner" may imply about the nature of the research relationship. CONCLUSIONS: At the onset of partnership, academic researchers and patient partners must create the space necessary to discuss and understand each other's underlying motivations for partnering and their perspectives on the purpose, value, and responsibilities of the patient partner role. These early conversations should help unearth what research partners hope to get out of and feel that they are able to contribute to engaging, and in such contribute to the development of reciprocal relationships that work towards shared and valued goals. Trial registration Not applicable.

Developing a shared understanding and respect for each other's motivations, experiences, and expectations is an important step toward successful academic researcher-patient partnerships. Therefore, this study aimed to explore patient partners' motivations for engagement and understanding of their role. We met this aim by interviewing 13 English-speaking individuals with lived/living experience of being patient partners on Strategy for Patient-Oriented Research projects. These individuals were identified through our database of previous study participants interested in future research opportunities. We analyzed the information gathered through interviews by identifying themes that arose among sets of interview questions. Our findings revealed that illuminating (i.e., sharing and drawing attention to) the lived/living patient and caregiver experience was central to how most participants defined the patient partner role and its purpose, value, and responsibilities. We also identified four other categories of motivations for becoming a patient partner and contributions that patient partners make to research other than sharing their lived/living experiences. Finally, interviews highlighted different types of meanings that could be attached to the title of "patient partner." Based on our findings, we suggest that it is very important that academic researchers and patient partners take the time to discuss and understand each other's underlying motivations for partnering and their thoughts on the purpose, value, and responsibilities of the patient partner role. These early conversations should help unearth what research partners hope to get out of and feel that they can contribute to engaging and, through this, help establish two-way relationships focused on shared and valued goals.

Multistakeholder Recommendations for Supporting Patients and Families Transitioning From Paediatric to Adult Congenital Heart Disease Care.

Background: Transitioning from paediatric to adult congenital heart disease (CHD) care is a high-risk time for being lost to follow-up. Existing CHD transition programmes have not included patients, caregivers, and health care providers as partners in their development. This study aimed to develop recommendations for a CHD transition programme driven by lived and clinical experiences. Methods: We used a multilevel participatory process that engaged adult and paediatric people living with CHD, their caregivers, and CHD health care providers as members of the research team. We also consulted members of these stakeholder groups through a series of 3 virtual workshops that culminated in the generation of recommendations for the essential components of a CHD transition programme. Results: The Transition Essentials recommendations inform what information, education, or support is required, who should provide it, and when and how it should be provided. Information, education, and support for self-management and knowledge are required for people living with CHD. Caregivers require information, education, and support to build capacity in people living with CHD and navigate their new role in their loved ones' life. The health care team should provide this information, education, and support with peer support options when people living with CHD are 15-22 years of age. This information, education, and support should be individualized, navigate limitations, build over time, have multimodal options, and be available virtually or in person. Conclusions: Engaging those with lived and clinical expertise to develop recommendations for the essential components of a CHD transition programme provides important insights missing from previous studies.

Contexte: La transition des personnes qui vivent avec une cardiopathie congénitale (CC) entre les soins pédiatriques et les soins destinés aux adultes constitue une période où le risque de perte de vue est élevé. Les programmes de transition existants n'ont pas été élaborés avec la participation des patients, des aidants ou des fournisseurs de soins de santé. La présente étude visait à mettre en place des recommandations fondées sur la réalité des personnes concernées et sur l'expérience clinique pour les programmes de transition en contexte de CC. Méthodologie: Nous avons fait appel à un processus participatif à plusieurs niveaux dans lequel des enfants et des adultes vivant avec la CC, des aidants et des fournisseurs de soins de santé du domaine de la CC ont été impliqués comme membres de l'équipe de recherche. Nous avons également mené des consultations auprès de ces groupes d'intervenants dans une série de trois ateliers virtuels qui ont mené à la rédaction de recommandations sur les composantes essentielles d'un programme de transition pour les personnes vivant avec une CC. Résultats: Les recommandations portant sur les impératifs d'une transition réussie énoncent les renseignements, la formation et le soutien nécessaires ainsi que les intervenants qui devraient les offrir, de quelle façon et à quel moment. Les personnes qui vivent avec une CC ont besoin de renseignements, de formation et de soutien pour l'autoprise en charge et l'accès aux connaissances. Quant aux aidants, ils ont aussi besoin de renseignements, de formation et de soutien pour mieux outiller les personnes qui vivent avec une CC et pour mieux comprendre leur nouveau rôle dans la vie de leur proche. Il conviendrait que les professionnels de la santé soient ceux qui offrent ces ressources, lesquelles devraient être personnalisées, tenir compte des lacunes à combler, être cumulatives, offrir des options multimodales et être accessibles en personne ou virtuellement. Les personnes de 15 à 22 ans qui vivent avec une CC devraient également avoir la possibilité de s'entraider. Conclusions: La participation des personnes qui ont une expertise ancrée dans la réalité et une expertise clinique afin de formuler des recommandations sur les éléments essentiels d'un programme de transition pour les personnes qui vivent avec une CC a permis d'obtenir des renseignements intéressants qui ne se trouvaient pas dans les études antérieures.

Patient and caregiver preferences and prioritized outcomes for cardiac surgery: A scoping review and consultation workshop.

OBJECTIVE(S): In light of the absence of patient and caregiver input in Enhanced Recovery After Surgery Cardiac Surgery guideline development, we conducted a scoping review to identify patient and caregiver preferences and prioritized outcomes related to perioperative care in cardiac surgery and its lifelong impact. METHODS: Five electronic databases were searched to retrieve studies investigating patient or caregiver preferences and prioritized outcomes. Information was charted in duplicate and analyzed using descriptive statistics or thematic analysis. A patient and caregiver consultation workshop validated scoping review findings and solicited novel preferences and outcomes. RESULTS: Of the 5292 articles retrieved, 43 met inclusion criteria. Most were from Europe (n = 19, 44%) or North America (n = 15, 35%) and qualitative and quantitative designs were represented in equal proportions. Fifty-two methods were used to obtain stakeholder preferences and prioritized outcomes, the majority being qualitative in nature (n = 32, 61%). Based on the collective preferences of 3772 patients and caregivers from the review and 17 from the consultation workshop, a total of 108 patient preferences, 32 caregiver preferences, and 19 prioritized outcomes were identified. The most commonly identified theme was "information and education." Improved quality of life was the most common patient-prioritized outcome, and all caregiver-prioritized outcomes were derived from the consultation workshop. CONCLUSIONS: Patient and caregiver preferences overlap with Enhanced Recovery After Surgery Cardiac Surgery recommendations targeting preoperative risk reduction strategies, prehabilitation, patient engagement technology, and intra- and postoperative strategies to reduce discomfort. To support clinical practice, future research should investigate associations with key surgical outcomes.

Access Denied: Nurses' Perspectives of Access to Oncology Care Among Indigenous Peoples in Canada.

Inequitable access to oncology care is a significant issue among Indigenous Peoples in Canada; however, the perspectives of oncology nurses have not been explored. Guided by an interpretive descriptive methodology, we explored nurses' perspectives on access to oncology care among Indigenous Peoples in Canada. Nurses described the health care system as "broken" and barriers to accessing oncology care as layered and compounding. Lack of culturally safe care was articulated as a significant issue impacting equitable access, while biomedical discourses were pervasive and competed with nurses' attempts at providing culturally safe and trauma- and violence-informed care by discounting the relational work of nurses.

Putting patient value first: Using a modified nominal group technique for the implementation of enhanced recovery after cardiac surgery recommendations.

Objective: In 2019, the Society for Enhanced Recovery After Cardiac Surgery (ERAS-CS) published perioperative guidelines to optimize the care of patients undergoing cardiac surgery. For centers with limited capacity, a sequential approach to the implementation of the full guidelines may be more feasible. Therefore, we aimed to explore the priority of implementation of the ERAS-CS guideline recommendations from a patient and caregiver perspective. Methods: Using a modified nominal group technique, individuals who previously underwent cardiac surgery and their caregivers ranked ERAS-CS recommendations within 3 time points (ie, preoperative, intraoperative, and postoperative) and across 2 to 3 voting rounds. Final round rankings (median, mean and first quartile) were used to determine relative priorities. Results: Seven individuals (5 patients and 2 caregivers) participated in the study. Patient engagement tools (2, 2.29, and 1.50), surgical site infection reduction (2, 1.67, and 1.25), and postoperative systematic delirium screening (1, 2.43, and 1.00) were the top-ranked ERAS-CS recommendations in the preoperative, intraoperative, and postoperative time points, respectively. Conclusions: Exploration of patient and caregiver priorities may provide important insights to guide the healthcare team with clinical pathway development and implementation. Further study is needed to understand the impact of the integration of patient and caregiver values on effective and sustainable clinical pathway implementation.

Use of a mobile health application by adult non-congenital cardiac surgery patients: A feasibility study.

Mobile Health (mHealth) technologies are becoming integral to our healthcare system. This study evaluated the feasibility (compliance, usability and user satisfaction) of a mHealth application (app) for delivering Enhanced Recovery Protocols (ERPs) information to Cardiac Surgery (CS) patients peri-operatively. This single centre, prospective cohort study involved patients undergoing CS. Patients received a mHealth app developed for the study at consent and for 6-8 weeks post-surgery. Patients completed system usability, patient satisfaction and quality of life surveys pre- and post-surgery. A total of 65 patients participated in the study (mean age of 64 years). The app achieved an overall utilization rate of 75% (68% vs 81% for <65 and ≥65 years respectively). Pre-surgery, the majority of patients found the app easy to use (94%), user-friendly (89%), and felt confident using the app (92%). The majority also found the app's educational information useful (90%) and easy to find (88%). 75% of patients reported that they would like to use the app frequently. This percentage decreased to 57% in the post-discharge survey. A lower percentage of patients ≥65 years indicated their preference for the app over printed information (51% vs 87%) and their recommendation for the app (84% vs 100% for >65 and <65 years respectively) in the post-surgery survey. MHealth technology is feasible for peri-operative CS patient education, including older adult patients. The majority of patients were satisfied with the app and would recommend using it over the use of printed materials.

Activities and impacts of patient engagement in CIHR SPOR funded research: a cross-sectional survey of academic researcher and patient partner experiences.

BACKGROUND: Knowledge about the specific engagement activities pursued and associated impacts of patient engagement in research in Canada remains nascent. This study aimed to describe engagement activities and perceived impacts of projects funded by the Strategy for Patient-Oriented Research (SPOR). METHODS: This was a cross-sectional online survey of academic researchers and patient partners engaging in projects funded through 13 SPOR funding calls (2014-2019). Patient engagement activities and impacts were measured using a self-developed survey. Thematic analysis was used to describe engagement activities and impacts. RESULTS: 66 of 511 academic researchers and 20 of 28 patient partners contacted completed the survey and were included in analyses. Respondents reported that patient partners were engaged in seven types of activities across the research cycle: (a) sharing experiences/giving advice, (b) identifying the research focus/methods, (c) developing/revising aspects of the project, (d) conducting research activities, (e) study participation, (f) presenting on behalf of the project, and (g) other grant development or knowledge translation activities. Engagement was associated with six different types of impacts related to knowledge, outputs, or directions being (a) created, (b) moulded, (c) confirmed, or (d) chosen/prioritized, (e) perceived success of the research, and (f) minimal/negative impacts on the research. CONCLUSIONS: This study presents information on different ways that patient partners were engaged in SPOR-funded research and the potential impacts of these activities. This knowledge base is imperative to the future of patient engagement in research, including the planning and evaluation of future studies that engage patients as active shapers of research.

The Canadian Institutes of Health Research developed the Strategy for Patient-Oriented Research (SPOR) to help increase capacity for patient engagement in research. However, little is known about the ways in which Canadian patient co-researchers (i.e., patient partners) are being engaged in research and the perceived impacts of engagement. Therefore, this study aimed to describe engagement activities and perceived impacts of SPOR-funded projects. To do so, we carried out an online survey of academic researchers and patient partners engaging in projects funded through 13 SPOR funding calls. We analysed the collected data using thematic analysis, which focuses on finding themes among data. Sixty-six of 511 academic researchers and 20 of 28 patient partners contacted completed the survey and were included in analyses. We found that patient partners were engaged in seven types of activities across the research cycle: (a) sharing experiences/giving advice, (b) identifying the research focus/methods, (c) developing/revising aspects of the project, (d) conducting research activities, (e) study participation, (f) presenting on behalf of the project, and (g) other grant development or knowledge translation activities. We also found that engagement was associated with six different types of impacts related to knowledge, outputs, or directions being (a) created, (b) moulded, (c) confirmed, or (d) chosen/prioritized, (e) perceived success of the research, and (f) minimal/negative impacts on the research. The findings of this study can be used to inform ongoing and future research, including empowering patient partners to be more informed and actively shape how they may contribute to research processes.