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2.
Health Res Policy Syst ; 22(1): 24, 2024 Feb 14.
Article in English | MEDLINE | ID: mdl-38350974

ABSTRACT

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.


Subject(s)
Patient Participation , Humans , Canada , Databases, Factual , Informed Consent
3.
J Adv Nurs ; 2024 Feb 06.
Article in English | MEDLINE | ID: mdl-38318983

ABSTRACT

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.

4.
Res Involv Engagem ; 9(1): 106, 2023 Nov 28.
Article in English | MEDLINE | ID: mdl-38017570

ABSTRACT

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.

5.
CJC Pediatr Congenit Heart Dis ; 2(5): 225-236, 2023 Oct.
Article in English | MEDLINE | ID: mdl-37970217

ABSTRACT

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.

6.
BMJ Open ; 13(3): e070576, 2023 03 14.
Article in English | MEDLINE | ID: mdl-36918246

ABSTRACT

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).


Subject(s)
Education, Nursing, Baccalaureate , Students, Nursing , Transgender Persons , Humans , Canada , Delivery of Health Care , Research Design , Systematic Reviews as Topic , Review Literature as Topic
7.
J Thorac Cardiovasc Surg ; 166(2): 598-609.e7, 2023 Aug.
Article in English | MEDLINE | ID: mdl-34924192

ABSTRACT

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.


Subject(s)
Cardiac Surgical Procedures , Caregivers , Humans , Quality of Life , Referral and Consultation , Cardiac Surgical Procedures/adverse effects , North America
8.
Res Involv Engagem ; 8(1): 44, 2022 Aug 29.
Article in English | MEDLINE | ID: mdl-36038887

ABSTRACT

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.

9.
Res Involv Engagem ; 8(1): 27, 2022 Jun 20.
Article in English | MEDLINE | ID: mdl-35725640

ABSTRACT

BACKGROUND: Scoping reviews of health research are increasing in popularity. However, only a minority of scoping reviews in this sector engage patients and caregivers as co-producers of the research. Despite developments in scoping review methodology, which insist that stakeholder consultation is essential, no guiding methods exist to instruct the conduct of this stage. Thus, it is necessary to understand how patients and caregivers have been engaged as part of scoping reviews, toward a unifying methodology. METHODS: We have developed a protocol for a scoping review of methods used to engage patients and caregivers in scoping reviews of health research. The search strategy will comprise two phases: the first will involve a secondary analysis of retrieved articles from a prior scoping review, and the second will identify articles that cite Levac et al.'s update to the original scoping review framework by Arksey and O'Malley. Titles and full texts of retrieved articles will be screened in duplicate. Inclusion will be limited to articles related to heath research that follow the six-stage scoping review framework by Arksey and O'Malley and that report patient engagement activities during at least one stage. The method of analysis of charted variables will be decided once data have been collected. Two patients will be engaged as collaborators throughout this review. We will also consult with patients, caregivers, and researchers upon completion of preliminary analyses. DISCUSSION: We anticipate that our scoping review will provide guidance for researchers seeking to involve health care stakeholders as co-producers of scoping reviews.


A "scoping review" is a type of study that collects and summarizes published and unpublished research reports to better understand the amount and types of information available on a particular topic. There is a well-known framework for how to conduct a scoping review, which involves six stages. The sixth stage is optional, and involves consulting with people who have an interest in the research results (i.e., people who the research is "about" or who it will affect the most). Very few scoping reviews actually include this stage, potentially due to a lack of practical guidance on how to perform it. For scoping reviews related to health research, it is important to consult or more widely engage patients and caregivers in the scoping review's conduct because these individuals have a unique type of knowledge that comes from their experience of a health issue, which can yield valuable insights. Therefore, we have designed a scoping review that will identify the ways in which patients and caregivers have been engaged in scoping reviews of health research in the past. We hope to produce recommendations to make it easier for other researchers to engage patients and caregivers in scoping reviews.

10.
ANS Adv Nurs Sci ; 45(4): 292-308, 2022.
Article in English | MEDLINE | ID: mdl-35696372

ABSTRACT

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.


Subject(s)
Indigenous Peoples , Nurses , Humans , Delivery of Health Care , Canada
11.
JTCVS Open ; 12: 306-314, 2022 Dec.
Article in English | MEDLINE | ID: mdl-36590723

ABSTRACT

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.

12.
Nurs Inq ; 29(1): e12446, 2022 01.
Article in English | MEDLINE | ID: mdl-34342080

ABSTRACT

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.


Subject(s)
Nurses , Racism , Canada , Health Services Accessibility , Humans , Indigenous Peoples
13.
PLOS Digit Health ; 1(6): e0000055, 2022 Jun.
Article in English | MEDLINE | ID: mdl-36812537

ABSTRACT

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.

14.
Syst Rev ; 10(1): 22, 2021 01 11.
Article in English | MEDLINE | ID: mdl-33423700

ABSTRACT

BACKGROUND: Cardiac surgery is becoming increasingly common in older, more vulnerable adults. A focus on timely and complete medical and functional recovery has led to the development of enhanced recovery protocols (ERPs) for a number of surgical procedures and subspecialties, including cardiac surgery (ERAS® Cardiac). An element that is often overlooked in the development and implementation of ERPs is the involvement of key stakeholder groups, including surgery patients and caregivers (e.g., family and/or friends). The aim of this study is to describe a protocol for a scoping review of cardiac patient and caregiver preferences and outcomes relevant to cardiac surgery ERPs. METHODS: Using Arksey and O'Malley's et al six-stage framework for scoping review methodologies with adaptions from Levac et al. (Represent Interv: 1-18, 2012), a scoping review of existing literature describing patient- and caregiver-identified preferences and outcomes as they relate to care received in the perioperative period of cardiac surgery will be undertaken. The search for relevant articles will be conducted using electronic databases (i.e., the Cochrane Library, Medline, PsycINFO, Scopus, and Embase), as well as through a search of the grey literature (e.g., CPG Infobase, Heart and Stroke Foundation, ProQuest Theses and Dissertations, Google Advanced, and Prospero). Published and unpublished full-text articles written in English, published after the year 2000, and that relate to the research question will be included. Central to the design of this scoping review is our collaboration with two patient partners who possess lived experience as cardiac surgery patients. DISCUSSION: This review will identify strategies that can be integrated into ERPs for cardiac surgery which align with patient- and caregiver-defined values. Broadly, it is our goal to demonstrate the added value of patient engagement in research to aid in the success of system change processes.


Subject(s)
Cardiac Surgical Procedures , Patient Participation , Adult , Aged , Caregivers , Humans , Review Literature as Topic
15.
BMJ Open ; 11(1): e037240, 2021 01 29.
Article in English | MEDLINE | ID: mdl-33514571

ABSTRACT

INTRODUCTION: In the past 20 years, the increasing burden of heart disease in an ageing population has resulted in cardiac surgery (CS) being offered to more frail and older patients with multiple comorbidities. Frailty and malnutrition are key geriatric syndromes that impact postoperative outcomes, including morbidity, mortality and prolonged hospital length of stay. Enhanced recovery protocols (ERPs), such as prehabilitation, have been associated with a reduction in complications after CS in vulnerable patients. The use of nutritional ERPs may enhance short-term and long-term recovery and mitigate frailty progression while improving patient-reported outcomes. METHODS AND ANALYSIS: This trial is a two-centre, double-blinded, placebo, randomised controlled trial with blinded endpoint assessment and intention-to-treat analysis. One-hundred and fifty CS patients will be randomised to receive either a leucine-rich protein supplement or a placebo with no supplemented protein. Patients will consume their assigned supplement two times per day for approximately 2 weeks pre-procedure, during in-hospital postoperative recovery and for 8 weeks following discharge. The primary outcome will be the Short Physical Performance Battery score. Data collection will occur at four time points including baseline, in-hospital (pre-discharge), 2-month and 6-month time points post-surgery. ETHICS AND DISSEMINATION: The University of Manitoba Biomedical Research Ethics Board (20 March 2018) and the St Boniface Hospital Research Review Committee (28 June 2019) approved the trial protocol for the primary site in Winnipeg, Manitoba, Canada. The second site's (Montreal, Quebec) ethics has been submitted and pending approval from the Research Ethics and New Technology Development Committee for the Montreal Heart Institute (December 2020). Recruitment for the primary site started February 2020 and the second site will begin January 2021. Data gathered from the PROTein to Enhance outComes of (pre)frail paTients undergoing Cardiac Surgery Study will be published in peer-reviewed journals and presented at national and international conferences. Knowledge translation strategies will be created to share findings with stakeholders who are positioned to implement evidence-informed change. POTENTIAL STUDY IMPACT: Malnutrition and frailty play a crucial role in post-CS recovery. Nutritional ERPs are increasingly being recognised as a clinically relevant aspect of perioperative care. As such, this trial is to determine if leucine-rich protein supplementation at key intervals can mitigate frailty progression and facilitate enhanced postoperative recovery. TRIAL REGISTRATION NUMBER: ClinicalTrials.gov Registry (NCT04038294).


Subject(s)
Cardiac Surgical Procedures , Frail Elderly , Aged , Canada , Humans , Manitoba , Quebec , Randomized Controlled Trials as Topic
16.
Nurs Inq ; 28(3): e12394, 2021 07.
Article in English | MEDLINE | ID: mdl-33348454

ABSTRACT

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.


Subject(s)
Healthcare Disparities/standards , Indigenous Peoples , Nursing/methods , Organizational Innovation , Healthcare Disparities/trends , Humans
17.
Syst Rev ; 9(1): 257, 2020 11 04.
Article in English | MEDLINE | ID: mdl-33148328

ABSTRACT

BACKGROUND: There is a complicated and exploitative history of research with Indigenous peoples and accompanying calls to meaningfully and respectfully include Indigenous knowledge in healthcare. Storytelling approaches that privilege Indigenous voices can be a useful tool to break the hold that Western worldviews have within the research. Our collaborative team of Indigenous and non-Indigenous researchers, and Indigenous patients, Elders, healthcare providers, and administrators, will conduct a critical participatory, scoping review to identify and examine how storytelling has been used as a method in Indigenous health research. METHODS: Guided by two-eyed seeing, we will use Bassett and McGibbon's adaption of Arksey and O'Malley's scoping review methodology. Relevant articles will be identified through a systematic search of the gray literature, core Indigenous health journals, and online databases including Scopus, MEDLINE, Embase, CINAHL, AgeLine, Academic Search Complete, Bibliography of Native North Americans, Canadian Reference Centre, and PsycINFO. Qualitative and mixed-methods research articles will be included if the researchers involved Indigenous participants or their healthcare professionals living in Turtle Island (i.e., Canada and the USA), Australia, or Aotearoa (New Zealand); use storytelling as a research method; focus on healthcare phenomena; and are written in English. Two reviewers will independently screen titles/abstracts and full-text articles. We will extract data, identify the array of storytelling approaches, and critically examine how storytelling was valued and used. An intensive collaboration will be woven throughout all review stages as academic researchers co-create this work with Indigenous patients, Elders, healthcare professionals, and administrators. Participatory strategies will include four relational gatherings throughout the project. Based on our findings, we will co-create a framework to guide the respectful use of storytelling as a method in Indigenous health research involving Indigenous and non-Indigenous peoples. DISCUSSION: This work will enable us to elucidate the extent, range, and nature of storytelling within Indigenous health research, to critically reflect on how it has been and could be used, and to develop guidance for the respectful use of this method within research that involves Indigenous peoples and settlers. Our findings will enable the advancement of storytelling methods which meaningfully include Indigenous perspectives, practices, and priorities to benefit the health and wellbeing of Indigenous communities. SYSTEMATIC REVIEW PROTOCOL REGISTRATION: Open Science Framework ( https://osf.io/rvf7q ).


Subject(s)
Indigenous Peoples , Population Groups , Aged , Australia , Canada , Delivery of Health Care , Humans , Review Literature as Topic
18.
Nicotine Tob Res ; 22(5): 599-612, 2020 04 21.
Article in English | MEDLINE | ID: mdl-30715468

ABSTRACT

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.


Subject(s)
Biomedical Research/standards , Primary Prevention/methods , Primary Prevention/trends , Research Design/standards , Tobacco Use Disorder/therapy , Humans , Tobacco Use Disorder/prevention & control
19.
CMAJ Open ; 7(4): E754-E760, 2019.
Article in English | MEDLINE | ID: mdl-31852681

ABSTRACT

BACKGROUND: Substantial cancer-related disparities exist between First Nations and non-Indigenous Canadians. The objectives of this study were to compare cancer incidence, stage at diagnosis and mortality outcomes between Status First Nations people living on reserve and off reserve in Manitoba. METHODS: We conducted a retrospective analysis of population-level administrative health databases in Manitoba. Cancers diagnosed between Apr. 1, 2004, and Mar. 31, 2011, were linked with the Indian Registry System and 5 provincial databases. We compared differences in baseline characteristics, cancer incidence, site and stage at diagnosis between Status First Nations patients living on and off reserve. Linear regression models examined trends in annual cancer incidence. Cox proportional hazard regression models examined mortality. RESULTS: There were 1524 newly diagnosed cancers among Status First Nations people in Manitoba between Apr. 1, 2004, and Mar. 31, 2011. First Nations people living on reserve were significantly older than those living off reserve (p < 0.001) and had higher Charlson Comorbidity Index scores at diagnosis (p = 0.01). A lower proportion of on-reserve patients than off-reserve patients were diagnosed with stage I cancers (21.7% v. 26.9%, p = 0.02). There were no differences in annual cancer incidence between groups. The adjusted incidence of cancer over the combined study years was higher in the off-reserve group than in the on-reserve group (287.9 v. 247.9 per 100 000, p = 0.02). No significant differences in mortality were found. INTERPRETATION: The lower proportion of on-reserve patients diagnosed with cancer at stage I is concerning, as it suggests less access to screening services or delays in diagnosis. Further research is needed to understand patterns in diagnosis and differences in cancer site and overall cancer incidence between First Nations people living on and off reserve.

20.
BMC Cancer ; 19(1): 1055, 2019 Nov 06.
Article in English | MEDLINE | ID: mdl-31694679

ABSTRACT

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.


Subject(s)
Health Services/statistics & numerical data , Indians, North American/statistics & numerical data , Neoplasms/epidemiology , Registries/statistics & numerical data , Aged , Aged, 80 and over , Canada/epidemiology , Female , Humans , Incidence , Male , Manitoba/epidemiology , Middle Aged , Neoplasm Staging , Neoplasms/diagnosis , Neoplasms/pathology , Proportional Hazards Models , Retrospective Studies
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