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Glendon R Tait,1 Joanna Bates,2 Kori A LaDonna,3 Valerie N Schulz,4 Patricia H Strachan,5 Allan McDougall,3 Lorelei Lingard3 1Department of Psychiatry and Division of Medical Education, Dalhousie University, Halifax, NS, 2Centre for Health Education Scholarship, Vancouver General Hospital, Vancouver, BC, 3Centre for Education Research and Innovation, Schulich School of Medicine and Dentistry, Western University, 4Palliative Care, London Health Sciences Centre, University Hospital, London; 5School of Nursing, McMaster University, Hamilton, ON, Canada 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. Keywords: palliative care, qualitative, complex adaptive system, multimorbidity, health care teams

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., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

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., (© 2022. The Author(s).)

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., Competing Interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article., (© The Author(s) 2018.)

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.

Objectives: We aimed to identify factors influencing communication and decision-making, and to learn how physicians and nurses view their roles in deciding about the use of life-sustaining technology for seriously ill hospitalised patients and their families., Design: The qualitative study used Flanagan's critical incident technique to guide interpretive description of open-ended in-depth individual interviews., Setting: Participants were recruited from the medical wards at 3 Canadian hospitals., Participants: Interviews were completed with 30 healthcare professionals (9 staff physicians, 9 residents and 12 nurses; aged 25-63 years; 73% female) involved in decisions about the care of seriously ill hospitalised patients and their families., Measures: Participants described encounters with patients and families in which communication and decision-making about life-sustaining technology went particularly well and unwell (ie, critical incidents). We further explored their roles, context and challenges. Analysis proceeded using constant comparative methods to form themes independently and with the interprofessional research team., Results: We identified several key factors that influenced communication and decision-making about life-sustaining technology. The overarching factor was how those involved in such communication and decision-making (healthcare providers, patients and families) conceptualised the goals of medical practice. Additional key factors related to how preferences and decision-making were shaped through relationships, particularly how people worked toward 'making sense of the situation', how physicians and nurses approached the inherent and systemic tensions in achieving consensus with families, and how physicians and nurses conducted professional work within teams. Participants described incidents in which these key factors interacted in dynamic and unpredictable ways to influence decision-making for any particular patient and family., Conclusions: A focus on more meaningful and productive dialogue with patients and families by (and between) each member of the healthcare team may improve decisions about life-sustaining technology. Work is needed to acknowledge and support the non-curative role of healthcare and build capacity for the interprofessional team to engage in effective decision-making discussions., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/)

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.

Context: There is a growing call to integrate palliative care for patients with advanced heart failure (HF). However, the knowledge to inform integration efforts comes largely from interview and survey research with individual patients and providers. This work has been critically important in raising awareness of the need for integration, but it is insufficient to inform solutions that must be enacted not by isolated individuals but by complex care teams. Research methods are urgently required to support systematic exploration of the experiences of patients with HF, family caregivers, and health care providers as they interact as a care team., Objectives: To design a research methodology that can support systematic exploration of the experiences of patients with HF, caregivers, and health care providers as they interact as a care team., Methods: This article describes in detail a methodology that we have piloted and are currently using in a multisite study of HF care teams., Results: We describe three aspects of the methodology: the theoretical framework, an innovative sampling strategy, and an iterative system of data collection and analysis that incorporates four data sources and four analytical steps., Conclusion: We anticipate that this innovative methodology will support groundbreaking research in both HF care and other team settings in which palliative integration efforts are emerging for patients with advanced nonmalignant disease., (Copyright © 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.)

Background: Patients are offered implantable defibrillators (ICDs) for the prevention of sudden cardiac death (SCD). However, patients' decision-making process (DMP) of whether or not to accept an ICD has not been explored. We asked patients about their decision making when offered an ICD., Design/setting: A grounded theory methodology was employed. Patients were recruited from three ICD centres. Those who received an ICD underwent interviews the first month after implant. Declining patients had interviews at their convenience. In-depth analysis of transcripts was completed. Identified themes were placed along process pathways in a DMP model and tested., Findings: Forty-four patients consented to participate (25% women). Thirty-four accepted an ICD and 10 (23%) declined. Ages ranged from 26 to 87 (mean = 65; SD = 12.5). Participants were retired (65%), had ischaemic heart disease (64%) and some post-secondary education (52%). The DMP was triggered when patient's risk for SCD was communicated. The physician's recommendation and a new awareness SCD risk were motivators to accept the ICD. Patient's decision-making approaches fell along a continuum, from active and engaged to passive and indifferent. Patient's approaches were influenced most by the following: (i) trust; (ii) social influences and (iii) health state., Conclusions: Health-care providers need to recognize the DMP pathways in which ICD candidacy and SCD risk are understood. The factors that influence a patient's decision warrant discussion pre-implant. It is imperative that patients comprehend the meaning of ICD candidacy to make an informed decision. Participants did not recall alternatives to receiving ICD therapy., (© 2011 Blackwell Publishing Ltd.)

The purpose of this study was to explore the care processes experienced by community-dwelling adults dying from advanced heart failure, their family caregivers, and their health-care providers. A descriptive qualitative design was used to guide data collection, analysis, and interpretation. The sample comprised 8 patients, 10 informal caregivers, 11 nurses, 3 physicians, and 3 pharmacists. Data analysis revealed that palliative care was influenced by unique contextual factors (i.e., cancer model of palliative care, limited access to resources, prognostication challenges). Patients described choosing interventions and living with fatigue, pain, shortness of breath, and functional decline. Family caregivers described surviving caregiver burden and drawing on their faith. Health professionals described their role as trying to coordinate care, building expertise, managing medications, and optimizing interprofessional collaboration. Participants strove towards 3 outcomes: effective symptom management, satisfaction with care, and a peaceful death.

Cardiovascular disease (CVD) is a chronic, progressive, incurable condition characterized by periods of apparent stability interspersed with acute exacerbations. Despite many important advances in its treatment, approximately one-third of deaths in Canada each year result from CVD. While this might lead one to assume that a comprehensive medical approach exists to the management of this inevitable outcome, the reality is much different. The current Canadian medical model emphasizes the management of acute exacerbations of CVD during which end-of-life issues figure frequently and prominently, although in a setting that is inappropriate to address the comprehensive needs of patients and their families.As a result, end-of-life care was made a theme of the recently reported Canadian Heart Health Strategy and Action Plan (www.chhs-scsc.ca). From this, several recommendations are made, central to which is the need to reframe CVD as a condition ideally suited to a chronic disease management approach. In addition, replacement of the term 'palliative care' with the term 'end-of-life planning and care' is proposed to foster earlier and more integrated comprehensive care, which, it is proposed, denotes the provision of advanced care planning, palliative care, hospice care and advanced directives, with a focus on decision making and planning. Finally, end-of-life planning and care should be a routine part of assessment of any patient with CVD, should be reassessed whenever important clinical changes occur and should be provided in a manner consistent with relevant CVD practice guidelines. Specifically, a Canadian strategy to improve end-of-life planning and care should focus on the following: * Integrated end-of-life planning and care across the health care system; * Facilitated communication and seamless care provision across all providers involved in end-of-life planning and care; * Adequate resources in the community for end-of-life planning and care; * Specialized training in sensitive communication and supportive care as part of core training for all members of the interdisciplinary care team; * Measurement of key performance indicators for end-of-life planning and care; and * Research into effective end-of-life planning and care.Heart failure is an advanced form of CVD with very high morbidity, mortality and burden of care, making it an ideal condition for implementation and testing of interventions to improve end-of-life planning and care.

Background: Patients with advanced heart failure (HF) experience progressive symptoms, decreased quality of life, and more frequent hospitalizations as they approach the end of life (EOL). Understanding patient perspectives and preferences regarding EOL issues is necessary to identify key opportunities for improving care., Objective: To identify, from the patient's perspective, the major opportunities for improving EOL care for patients hospitalized because of advanced HF., Methods: A cross-sectional survey of patient perspectives regarding EOL care was administered via interview of 106 hospitalized patients who had advanced HF in five tertiary care centres across Canada. The study compared which aspects of EOL care patients rated as 'extremely important' and their level of satisfaction with these aspects of EOL care to identify key opportunities for improvement of care., Results: The greatest opportunities for improvement in EOL care were reducing the emotional and physical burden on family, having an adequate plan of care following discharge, effective symptom relief and opportunities for honest communication. The three most important issues ranked by patients were avoidance of life support if there was no hope for a meaningful recovery, communication of information by the doctor and avoidance of burden for the family., Conclusions: Advanced care planning that seamlessly bridges hospital and home must be standard care for patients who have advanced HF. Components must include coordination of care, caregiver support, comprehensive symptom management, and effective communication regarding HF and EOL issues.