Transplant Recipient Preferences Regarding Organ Donor Research: Their Role in Consent and use of Their Data.

Research on deceased organ donors has been hindered by concerns related to seeking research consent from transplant recipients. We undertook this qualitative study to elucidate solid organ transplant recipients views on organ donor research, their role in the consent for such research, and their preferences related to providing their data. We conducted interviews with 18 participants and three themes emerged from the data. The first centered around participant research literacy. The second described practical preferences of participating in research, and the third related to the connection between donor and recipient. We concluded that previously held views about the requirement for transplant recipients to have a consenting role in donor research is not always suitable.

Inclusivity in Graduate Nursing Education: A Scoping Review.

BACKGROUND: Advancing inclusivity in graduate nursing education is paramount for preparing diverse nursing leaders to mobilize change within health care and educational systems. This scoping review examined inclusivity in graduate nursing education. METHOD: CINAHL, Medline, and ERIC databases were searched for studies published in English since 2011. Key journals and reference lists of included studies were hand searched. Included studies focused on inclusivity in the context of graduate nursing education. RESULTS: Data from 31 included studies are presented. Most of the studies (n = 22) aimed to cultivate inclusivity among students, primarily through cultural competence training. A few studies enacted inclusivity through program-level strategies (n = 4) or explored the lived experiences of diverse students (n = 5). CONCLUSION: Future research and education initiatives should advance a more holistic, intersectional approach to cultivating inclusivity, as well as emphasize enacting inclusivity through strategies to transform the learning environment. [J Nurs Educ. 2022;61(12):679-692.].

Supporting self-management in women with pre-existing diabetes in pregnancy: a protocol for a mixed-methods sequential comparative case study.

INTRODUCTION: For women with pre-existing type 1 and type 2 diabetes, glycaemic targets are narrow during the preconception and prenatal periods to optimise pregnancy outcomes. Women aim to achieve glycaemic targets during pregnancy through the daily tasks of diabetes self-management. Diabetes self-management during pregnancy involves frequent self-monitoring of blood glucose and titration of insulin based on glucose measures and carbohydrate intake. Our objective is to explore how self-management and support experiences help explain glycaemic control among women with pre-existing diabetes in pregnancy. METHODS AND ANALYSIS: We will conduct a four-phased mixed-methods sequential comparative case study. Phase I will analyse the data from a prospective cohort study to determine the predictors of glycaemic control during pregnancy related to diabetes self-management among women with pre-existing diabetes. In phase II, we will use the results of the cohort analysis to develop data collection tools for phase III. Phase III will be a qualitative description study to understand women's diabetes education and support needs during pregnancy. In phase IV, we will integrate the results of phases I and III to generate unique cases representing the ways in which self-management and support experiences explain glycaemic control in pregnancy. ETHICS AND DISSEMINATION: The phase I cohort study received approval from our local ethics review board, the Hamilton Integrated Ethics Review Board. We will seek ethics approval for the phase III qualitative study prior to its commencement. Participants will provide informed consent before study enrolment. We plan to publish our results in peer-reviewed journals and present our findings to stakeholders at relevant conferences/symposia.

Factors impacting the access and use of formal health and social services by caregivers of stroke survivors: an interpretive description study.

BACKGROUND: Evidence has shown that family and friend caregivers of stroke survivors are significantly and negatively impacted by caregiving. The negative effects of caregiving may persist over time suggesting that caregivers might benefit from ongoing engagement with supportive services. However, little is known about caregivers' use of formally funded health and social services, or the factors influencing their access to and use of these services. The aim of this study is to increase understanding of the factors that influence stroke caregivers' access and use of formal health and social services, from the perspective of stroke caregivers and healthcare providers. METHODS: A qualitative study was conducted with stroke caregivers and health providers in Ontario, Canada using interpretive description. In-depth interviews were conducted with caregivers of survivors who experienced a stroke between six months to five years previous and healthcare providers who support caregivers and stroke survivors. All participants provided written informed consent. Interview data were analyzed using constant comparison to identify codes and develop key thematic constructs. RESULTS: A total of 40 interviews were conducted with 22 stroke caregivers at an average 30-months post-stroke and 18 health providers. Factors that influenced stroke caregivers' access and use of services included: finances and transportation; challenges caregivers faced in caring for their health; trust that they could leave their family member and trust in health providers; limited information pertaining to services and a lack of suitable services; and the response of their social networks to their caregiving situation. CONCLUSION: Stroke caregivers experience significant challenges in accessing and using formal health and social services. These challenges could be addressed by increasing availability of subsidized community-based supports such as respite and counselling tailored to meet the ongoing needs of caregivers. Systemic change is needed by the health system that readily includes and supports caregivers throughout the stroke recovery continuum, particularly in the community setting.

Slam Bam, Thank you, Ma'am: The Challenges of Advance Care Planning Engagement in Long-Term Care.

This interpretative, qualitative study explored residents' and families' perspectives on advance care planning (ACP) in long-term care (LTC). Perspectives on when, how, and with whom ACP discussions should be introduced and barriers and solutions to improving ACP engagement were examined. Fifty-one residents and families participated in seven focus groups. The findings revealed that residents and families prioritized caring connections over professional rank when reflecting on staff involvement in ACP. The findings further revealed that the caring and compassionate environment considered to be a critical pre-condition for ACP engagement was more typically enacted at end of life when ACP was no longer an option. Our findings suggest that work practices and organizational structures within LTC play an important role in inhibiting ACP engagement.

Formal Health and Social Services That Directly and Indirectly Benefit Stroke Caregivers: A Scoping Review of Access and Use.

Stroke can be a life altering event that necessitates considerable amounts of formal and informal care. The impacts of stroke often persist over time requiring ongoing support for stroke survivors. Family members provide the majority of care and experience many life changes as a result of their caregiving role including social, financial, employment and health impacts. Formal supports such as counselling, respite, and health promotion initiatives that directly benefit caregivers or benefit them indirectly through supporting the stroke survivor, are well-placed to help caregivers manage their caregiving role. However, to date little is known about formal service use by stroke caregivers and the factors that influence their service use. This scoping review provides a critique and synthesis of what is known about stroke caregivers' access and use of formal services intended to support them. Findings suggest that while services are available, caregivers' ability to use them are impacted by both facilitators and barriers. Facilitators included: sex, age, and having a higher household income (depending on services used). Barriers included: high cost, poor service quality and deficient knowledge/communication regarding service availability. This review highlights a significant gap in our knowledge of caregivers' experience in accessing and using formal services.

Transition to adult care for youth with medical complexity: Assessing needs and setting priorities for a health care improvement initiative.

BACKGROUND: Technological advances have led to more youth with medical complexity (YMC) who are living into adulthood and being transferred from pediatric to adult care. The transition to adult care is a complex and challenging process, partly due to differences in how pediatric and adult systems deliver health care. YMC and their families need support from their health care providers to ease this transition. To identify how to better support transitioning YMC, a needs assessment was conducted to examine the current state of transitional support for youth and families cared for by a pediatric Complex Care Program. AIMS: The aims of this needs assessment were to understand the transition practices of pediatric Complex Care Programs, explore transition-related needs of YMC and their families, and identify priorities for future quality improvement. METHODS: This project involved three components: a literature review, a benchmarking survey of pediatric Complex Care Programs in Ontario, and key informant interviews. FINDINGS: The benchmarking survey identified transition planning and transfer of care as areas of strength in the Complex Care Program, while transition readiness and transfer completion provided opportunities for improvement. Stakeholder collaboration, an early start, and knowledgeable providers facilitated a successful transition. Barriers included lack of time, poor access to adult services and resources, higher medical complexity, and inadequate support for adult health care providers. CONCLUSIONS: Recommendations for improving transitional care for YMC are provided, along with resources, tools, and considerations for implementation.

Transitioning to Adult Services for Youth With Medical Complexity: A Practice Issue Viewed Through the Lens of Transitions Theory.

As youth with medical complexity transition to adult services, their extensive support networks are disrupted, leaving them vulnerable to care gaps. Within the setting of a pediatric complex care clinic in Ontario, Canada, the authors conducted a needs assessment guided by transitions theory to better understand the movement to adult services for youth and their families. The authors here describe the application of transitions theory and critique the theory's usefulness for understanding the transition to adult services for youth and their families.

Is feyerabendian philosophy relevant for scientific knowledge development in nursing?

To revitalize nursing science, there is a need for a new approach to guide nurse scientists in addressing complex problems in health care. By applying theoretical concepts from a revolutionary philosopher of science, Paul K. Feyerabend, new nursing knowledge can be produced using creativity and pluralistic approaches. Feyerabend proposed that methods within and outside of science can produce knowledge. Despite the recognition of Feyerabendian philosophy within science, there is currently a lack of literature regarding the relevance of Feyerabendian philosophy for nursing science. We aim to (a) describe and critique Feyerabendian concepts, (b) discuss the potential application of Feyerabendian philosophy for knowledge production within gerontological nursing and (c) describe theoretical possibilities for nurse scientists in using Feyerabendian philosophy to guide nursing knowledge development. We begin by introducing Feyerabend's life and his inspirations for his theoretical concepts, epistemological anarchism, theoretical pluralism and humanitarianism, and conclude by offering suggestions of how to apply Feyerabendian philosophy in nursing research.

Complexity science education for clinical nurse researchers.

Nurse researchers-in-training learn that traditional research methods aligning with the positivist paradigm are suitable for evaluating the effects of clinical interventions. Preferred research methods (such as the randomized controlled trial) are based on assumptions that linear cause-and-effect relationships are discoverable through careful manipulation of variables under controlled conditions. Yet clinical intervention trials in practice are much more often done in environments which are in constant states of flux, with dynamic and unpredictable variables rather than settings where uniformity and control are routine. Graduate nursing programs should expose students with interests in clinical research to methods that will enable them to make sense of how to evaluate clinical interventions in real world conditions. In this paper, we discuss the relevance of concepts from the field of Complexity Science-with a focus on Complex Adaptive Systems-to clinical research and examine their potential value to guide nursing research that informs evidence-based nursing interventions. We argue that the introduction of these concepts into graduate nursing curricula is fundamental to the preparation of future nurse scientists who will address the complex healthcare problems of this century.

Self-Report Tools for Assessing Physical Activity in Community-Living Older Adults with Multiple Chronic Conditions: A Systematic Review of Psychometric Properties and Feasibility.

Identifier l'outil d'autodéclaration de l'activité physique (AP) le plus adapté pour l'évaluation de l'AP chez les personnes âgées vivant dans la communauté qui sont atteintes de multiples maladies chroniques (MMC). L'AP peut avoir une influence positive sur la santé physique et psychologique de cette population. Bien qu'il existe des outils d'auto-évaluation de l'AP, les propriétés psychométriques et la faisabilité de l'utilisation de ces outils chez les personnes âgées avec MMC sont peu connues. Une revue systématique des études publiées entre 2000 et 2018 portant sur les propriétés psychométriques et la faisabilité de 18 outils d'auto-évaluation élaborés pour les personnes âgées vivant en communauté (≥ 65 ans) a été réalisée en vue de déterminer leur pertinence pour les personnes âgées atteintes de MMC. L'évaluation des données disponibles sur les propriétés psychométriques et la faisabilité des 18 outils d'auto-évaluation de l'activité physique a permis d'établir que l'Échelle d'évaluation de l'activité physique chez les personnes âgées (Physical Activity Assessment Scale for the Elderly; PASE) est l'outil d'auto-évaluation le plus adapté, qui devrait être recommandé pour la population de personnes âgées avec MMC.The purpose of this study was to identify the self-report physical activity (PA) tool best suited for assessment of PA in community-dwelling older adults with multiple chronic conditions (MCC). PA can positively influence physical and psychological health in this population. Although self-report PA tools exist, little is known about the psychometric properties and feasibility of using these tools in older adults with MCC. A systematic literature review from 2000 to 2018 was conducted of studies reporting on the psychometric properties and feasibility of 18 self-report PA tools for community-dwelling older adults (≥ 65 years) to determine the suitability of these tools for use in older adults with MCC. Based on an assessment of the available evidence for the psychometric properties and feasibility of 18 different self-report PA tools, the Physical Activity Assessment Scale for the Elderly (PASE) is recommended as the best-suited self-report PA tool for older adults with MCC.

Condition-Specific Pamphlets to Improve End-of-life Communication in Long-term Care: Staff Perceptions on Usability and Use.

OBJECTIVES: This article reports findings on the usability and staff use of 5 condition- specific pamphlets of high prevalence in long-term care (LTC): dementia, heart failure, chronic obstructive pulmonary disease, renal failure, and frailty. The pamphlets were created in response to residents', families', and staff's recommendations for activating early reflections and communication about end-of-life care. DESIGN: A mixed-method (qualitative and quantitative) survey design was used. Step 1 collected survey data on the usability of the pamphlets. Step 2 collected survey data on pamphlet use. SETTINGS AND PARTICIPANTS: Two nurses with specialized palliative care training, 2 resident/family representatives, 10 condition-specific specialists, and 33 LTC palliative leads reviewed the pamphlets for usability prior to distribution. A total of 178 LTC home staff in 4 participating LTC homes reported on pamphlet use. MEASURES: Specialists and resident/family representatives were asked to provide open comments and LTC home palliative leads were asked to complete a survey on the accuracy, readability, and relevance of the pamphlets. After 6 months of distribution, all staff in participating LTC homes were asked to complete a survey on pamphlet use, usefulness, and comfort with distribution. RESULTS: The pamphlets were reportedly accurate, relevant, and easy to understand. Following 6 months of availability, most staff in LTC had read the pamphlets, found the information useful, and planned to share them. However, half of the staff questioned their role in pamphlet distribution and most had not distributed them. Regulated staff (ie, staff affiliated with a regulated profession) expressed more comfort sharing the pamphlets than care aides and support staff. CONCLUSIONS/IMPLICATIONS: Condition-specific pamphlets appear to hold promise in providing residents and families with relevant information that may activate early reflections and conversations about end-of-life care. However, structured implementation strategies, training, and discussions are required to improve staff comfort with distribution and explore roles in distribution and follow-up.

Canadian hospital nurses' roles in communication and decision-making about goals of care: An interpretive description of critical incidents.

BACKGROUND: Nurses in acute medical units are uniquely positioned to support goals of care communication. Further understanding of nurse and physician perceptions about hospital nurses' actual and possible roles was required to improve goals of care communication. OBJECTIVE: To critically examine nurse and physician perceptions of the nurse's role in communication with seriously ill patients and their families. DESIGN: We focus on the qualitative component of a mixed method study. We employed an interpretive descriptive approach informed by Flanagan's critical incident technique. SETTINGS: Participants were recruited from the acute medical units at three tertiary care hospitals in three Canadian provinces. PARTICIPANTS: Thirty participants provided interviews (10 from each site): 12 nurses, 9 staff physicians and 9 medical resident physicians. METHODS: Participants' described "critical incidents" they considered as "excellent" or "poor" or "usual" practice. Interviews, were audiotaped and transcribed. Team-based analysis used constant comparison and triangulation to identify healthcare team members' roles in goals of care communication. RESULTS: We identified two major themes from 120 critical incidents: 1) the ambiguous nature of the nurse's role in formal, physician-led, decision-making communication, and 2) embedded in care serious illness communication. Physicians understood nurses' supportive role in relation to their own communication practices that culminated in decisions about care; nurses' reported their roles were determined by unit routines, physician practices and preferences, and their self-confidence in supporting decision-making. Nurses described their unique role in facilitating informal and spontaneous communication with patients and families that was critical background work to physician-led goals of care communication. CONCLUSIONS: Nurses and physicians had different understandings, practices and beliefs about goals of care communication The value of nurses embedded in care work is key to supporting the interprofessional team's work during formal goals of care communication.

Self-Management of Multiple Chronic Conditions by Community-Dwelling Older Adults: A Concept Analysis.

The proportion of the aging population living with multiple chronic conditions (MCC) is increasing. Self-management is valuable in helping individuals manage MCC. The purpose of this study was to conduct a concept analysis of self-management in community-dwelling older adults with MCC using Walker and Avant's method. The review included 30 articles published between 2000 and 2017. The following attributes were identified: (a) using financial resources for chronic disease management, (b) acquiring health- and disease-related education, (c) making use of ongoing social supports, (d) responding positively to health changes, (e) ongoing engagement with the health system, and (f) actively participating in sustained disease management. Self-management is a complex process; the presence of these attributes increases the likelihood that an older adult will be successful in managing the symptoms of MCC.

Challenges in clarifying goals of care in patients with advanced heart failure.

PURPOSE OF REVIEW: Patients with advanced heart failure require communication about goals of care, yet many challenges exist, leaving it suboptimal. High mortality rates and advances in the use of life-sustaining technology further complicate communication and underscore the urgency to understand and address these challenges. This review highlights current research with a view to informing future research and practice to improve goals of care communication. RECENT FINDINGS: Clinicians view patient and family barriers as more impactful than clinician and system factors in impeding goals of care discussions. Knowledge gaps about life-sustaining technology challenge timely goals of care discussions. Complex, nurse-led interventions that activate patient, clinician and care systems and video-decision aids about life-sustaining technology may reduce barriers and facilitate goals of care communication. SUMMARY: Clinicians require relational skills in facilitating goals of care communication with diverse patients and families with heart failure knowledge gaps, who may be experiencing stress and discord. Future research should explore the dynamics of goals of care communication in real-time from patient, family and clinician perspectives, to inform development of upstream and complex interventions that optimize communication. Further testing of interventions is needed in and across community and hospital settings.

Barriers to Goals of Care Discussions With Patients Who Have Advanced Heart Failure: Results of a Multicenter Survey of Hospital-Based Cardiology Clinicians.

BACKGROUND: Conversations about goals of care in hospital are important to patients who have advanced heart failure (HF). METHODS: We conducted a multicenter survey of cardiology nurses, fellows, and cardiologists at 8 Canadian teaching hospitals. The primary outcome was the importance of barriers to goals-of-care discussions in hospital (1 = extremely unimportant; 7 = extremely important). We also elicited perspectives on roles of different practitioners in having these conversations. RESULTS: Questionnaires were returned by 770/1024 (75.2%) eligible clinicians. The most important perceived barriers were: family members' and patients' difficulty in accepting a poor prognosis (mean [SD] score 5.9 [1.1] and 5.7 [1.2], respectively), family members' and patients' lack of understanding about the limitations and harms of life-sustaining treatments (5.8 [1.1] and 5.7 [1.2], respectively), and lack of agreement among family members about goals of care (5.8 [1.2]). Interprofessional team members were viewed as having different but important roles in goals-of-care discussions. CONCLUSIONS: Cardiology clinicians perceive family and patient-related factors as the most important barriers to goals-of-care discussions in hospital. Many members of the interprofessional team were viewed as having important roles in addressing goals of care. These findings can inform the design of future interventions to improve communication about goals of care in advanced HF.

Barriers to goals of care discussions with hospitalized patients with advanced heart failure: feasibility and performance of a novel questionnaire.

AIMS: Good end-of-life communication and decision-making are important to patients with advanced heart failure (HF) and their families, but their needs remain unmet. In this pilot study, we describe the feasibility and performance of a novel questionnaire aimed at identifying barriers and solutions to improve communication and decision-making about goals of care for hospitalized patients with advanced HF. METHODS: We distributed questionnaires to staff cardiologists, cardiology trainees, and cardiology nurses who provide care for HF patients at a Canadian teaching hospital. The questionnaire asked about the importance of various barriers to goals of care discussions. It also asked participants to rank their willingness to engage in goals of care discussions and their views on other clinicians could engage in such discussions. RESULTS: Of 76 clinicians, 44 (58%) completed the questionnaire (median completion time, 17 min). Individual survey questions had few missing responses (0% to 2%) for questions about barriers to goals of care discussions. There was appreciable discrimination of the importance of different barriers (mean scores 2.2 to 6.0 on a 7-point scale). Preliminary data suggest that clinicians perceive patient and family factors, such as difficulty accepting a poor prognosis, as the most important barriers preventing goals of care discussions. CONCLUSIONS: In this pilot study, we have demonstrated the feasibility of a novel questionnaire to be used in a larger multi-centre study of end-of-life HF care. Essential information will be obtained to inform the design and evaluation of interventions that seek to improve communication and decision-making about goals of care with HF patients.

Caregiver Contribution to Heart Failure Self-Care (CACHS).

AIM: While caregivers (CGs) make an important contribution to the self-care of heart failure (HF) patients, there are no reliable and valid tools for measuring such contributions. Current interventions that strive to optimize patient outcomes through self-care strategies neglect to account for CG contributions, a potential confounder on outcomes. The aim of the study was to develop an instrument that measures CG contributions to HF patients' self-care. DESIGN: The study design follows an established process for instrument development. METHODS: A systematic literature review and semi-structured interviews of CGs were conducted to identify measureable CG activities. Items were derived from thematic analysis of CG narratives. A content validity index was computed for each item (I-CVI). Items with an I-CVI of >0·70 were retained. Items with an I-CVI of 0·50-0·70 were revised for clarification and items with an I-CVI <0·5 were discarded, except in instances where fulsome theoretical or empirical evidence supported their retention. RESULTS: 14 CGs completed interviews and 10 CGs with 4 expert nurses completed I-CVI testing. Major interview themes included arranging appointments, medication adherence, monitoring, coordinating care, encouraging independence and taking action. A total of 36 items were constructed and underwent I-CVI testing. Following I-CVI testing, 27 items were retained, seven items were retained after revision based on CG feedback and two items were removed. This newly developed 34-item questionnaire represents current literature, CGs' experiences, excellent I-CVI scores and ready for further psychometric testing.

Adaptive practices in heart failure care teams: implications for patient-centered care in the context of complexity.

BACKGROUND: Heart failure (HF), one of the three leading causes of death, is a chronic, progressive, incurable disease. There is growing support for integration of palliative care's holistic approach to suffering, but insufficient understanding of how this would happen in the complex team context of HF care. This study examined how HF care teams, as defined by patients, work together to provide care to patients with advanced disease. METHODS: Team members were identified by each participating patient, generating team sampling units (TSUs) for each patient. Drawn from five study sites in three Canadian provinces, our dataset consists of 209 interviews from 50 TSUs. Drawing on a theoretical framing of HF teams as complex adaptive systems (CAS), interviews were analyzed using the constant comparative method associated with constructivist grounded theory. RESULTS: This paper centers on the dominant theme of system practices, how HF care delivery is reported to work organizationally, socially, and practically, and describes two subthemes: "the way things work around here", which were commonplace, routine ways of doing things, and "the way we make things work around here", which were more conscious, effortful adaptations to usual practice in response to emergent needs. An adaptive practice, often a small alteration to routine, could have amplified effects beyond those intended by the innovating team member and could extend to other settings. CONCLUSION: Adaptive practices emerged unpredictably and were variably experienced by team members. Our study offers an empirically grounded explanation of how HF care teams self-organize and how adaptive practices emerge from nonlinear interdependencies among diverse agents. We use these insights to reframe the question of palliative care integration, to ask how best to foster palliative care-aligned adaptive practices in HF care. This work has implications for health care's growing challenge of providing care to those with chronic medical illness in complex, team-based settings.

Improving support for heart failure patients: a systematic review to understand patients' perspectives on self-care.

AIMS: This systematic review aimed to generate patient-focussed recommendations to enhance support of heart failure self-care by examining patients' experiences, perspectives and self-care behaviours. BACKGROUND: Despite increased recognition of the importance of heart failure self-care, patients' knowledge and practices around this self-care and interventions to improve it are inconsistent. Consequently, current guidelines focus on what the domains of heart failure self-care are, more so than the ways to improve this care. DESIGN: Systematic review and qualitative interpretive synthesis. DATA SOURCES: A systematic, comprehensive and detailed search of 11 databases was conducted until March, 2012 for papers published 1995-2012: 37 studies were included (1343 patients, 75 caregivers, 63 health care professionals) that contained a qualitative research component and data on adult patients' heart failure self-care. REVIEW METHODS: This interpretive synthesis used a recognized approach consisting of a multi-stage analytic process; in addition, the included studies underwent quality appraisal. RESULTS: Findings indicate that while patients could often recall health professionals' self-care advice, they were unable to integrate this knowledge into daily life. Attempts to manage HF were based on how patients 'felt' rather than clinical indicators of worsening symptoms. Self-efficacy and learning from past management experiences facilitated favourable outcomes - these enabled patients and caregivers to adeptly apply self-care strategies into daily activities. CONCLUSIONS: Addressing common but basic knowledge misconceptions regarding the domains of HF self-care is insufficient to increase effective HF self-care; this should be supplemented with strategies with patients and family members to promote self-efficacy, learning and adaptation/application of recommendations to daily life.