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.

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.

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.

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.

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.

A systematic review of patient heart failure self-care strategies.

BACKGROUND: Self-care is at the foundation for living with a chronic condition such as heart failure (HF). Patients with HF express difficulty with translating self-care knowledge into understanding "how" to engage in these activities and behaviors. Understanding the strategies that patients develop to engage in self-care will help healthcare providers (HCPs) improve support for unmet self-care needs of HF patients. The purpose of this systematic review was to highlight strategies that HF patients use to accommodate self-care recommendations into the reality of their daily lives. METHODS: A systematic review using qualitative meta-synthesis was carried out. Included studies had to contain a qualitative component and data pertaining to self-care of HF from adults older than 18 years and be published as full papers/theses beginning 1995. Ten databases were searched until March 19, 2012. RESULTS: Of 1421 papers identified by the search, 47 were included. Studies involved the following: 1377 patients, 45% women, mean age of 67 years (range, 25-98 years), 145 caregivers, and 15 HCPs. Approaches to self-care reflected both perception- and action-based strategies and were a means to effectively manage HF. Although HF patients often expressed difficulty on how to integrate self-care recommendations into their daily lives, they developed intentional, planned strategies that harnessed previous experiences. CONCLUSIONS: Healthcare providers must appreciate that patients view self-care as an "adaptation" that they undertake to maintain their independence and quality of life. In addition, HCPs must recognize that because self-care is a process of learning over time from experience, an individualized approach that emphasizes how to self-care must be adopted for patients to develop the necessary HF self-care skills.

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.

Reliability of vascular access site bruise measurement.

BACKGROUND AND PURPOSE: Vascular access site (VAS) bruising is common following invasive cardiac procedures. The extent of VAS bruising is underreported because of the lack of reliable measurement methods. This study examined the reliability of linear measurement and planimetry to measure VAS bruise size. METHODS: There were 40 participants with VAS bruising after invasive cardiac procedures who completed VAS bruise measurement. Participants, a principal investigator, and a research assistant completed measurements independently. Inter-rater reliability was determined using intraclass correlation coefficient (ICC), 2-way random effects model. RESULTS: The ICC for linear measurement and planimetry was high (.929 and .914 respectively). Both methods were reliable measures of VAS bruise size. CONCLUSIONS: Linear measurement or planimetry can be used with confidence to measure VAS bruising in clinical and research contexts.

Context matters in heart failure self-care: a qualitative systematic review.

BACKGROUND: The aim of this work was to identify the main contextual factors and processes that influence patients' self-care of heart failure (HF). METHODS AND RESULTS: A systematic review was conducted with the use of qualitative meta-synthesis. Ten databases were searched up to March 19, 2012. Of the 1,421 papers identified by the systematic search, 45 studies were included in this meta-synthesis. To be included, studies had to contain a qualitative research component, data pertaining to self-care of HF from adults (≥18 y) and be published as full papers or theses since 1995. These studies involved: 1,398 patients (mean age 65.9 y), 180 caregivers, and 63 health professionals. Six main types of contextual factors were found to influence HF self-care in the studies: caregivers; social networks and social support; place; finances and financial capacity; work and occupation; and HF support groups and programs. CONCLUSION: HF self-care is influenced by contextual elements that fall outside of traditional elements of a HF self-care program. Inclusion of these elements may help to address the current concerns about poor adherence to self-management programs.

Managing heart failure in the long-term care setting: nurses' experiences in Ontario, Canada.

BACKGROUND: Implementation of heart failure guidelines in long-term care (LTC) settings is challenging. Understanding the conditions of nursing practice can improve management, reduce suffering, and prevent hospital admission of LTC residents living with heart failure. OBJECTIVE: The aim of the study was to understand the experiences of LTC nurses managing care for residents with heart failure. METHODS: This was a descriptive qualitative study nested in Phase 2 of a three-phase mixed methods project designed to investigate barriers and solutions to implementing the Canadian Cardiovascular Society heart failure guidelines into LTC homes. Five focus groups totaling 33 nurses working in LTC settings in Ontario, Canada, were audiorecorded, then transcribed verbatim, and entered into NVivo9. A complex adaptive systems framework informed this analysis. Thematic content analysis was conducted by the research team. Triangulation, rigorous discussion, and a search for negative cases were conducted. Data were collected between May and July 2010. RESULTS: Nurses characterized their experiences managing heart failure in relation to many influences on their capacity for decision-making in LTC settings: (a) a reactive versus proactive approach to chronic illness; (b) ability to interpret heart failure signs, symptoms, and acuity; (c) compromised information flow; (d) access to resources; and (e) moral distress. DISCUSSION: Heart failure guideline implementation reflects multiple dynamic influences. Leadership that addresses these factors is required to optimize the conditions of heart failure care and related nursing practice.

The relationship between religious service attendance and coronary heart disease and related risk factors in Saskatchewan, Canada.

Research suggests that attending religious services could provide small yet important protective benefits against coronary heart disease (CHD) and CHD risk factors (e.g., diabetes, hypertension). The extent to which these benefits apply to Canada deserves study because approximately one-third of adult Canadians attend religious services at least monthly. Therefore, the objective of this study is to examine the association between frequency of religious service attendance and prevalence of (1) CHD, (2) diabetes, and (3) hypertension in Canada. We used the Saskatchewan sample (n = 5,442) of the Canadian Community Health Survey (CCHS-4.1) and built multivariable logistic regression models to evaluate associations between religious service attendance and self-reported CHD, diabetes, and hypertension. After controlling for demographic, socioeconomic and health behavior variables, the association between religious service attendance and prevalence of CHD was not significant (OR = 0.82; 95 % CI 0.61-1.11). However, persons who attended religious services more than once a week exhibited lower prevalence odds of diabetes (OR = 0.60; 95 % CI 0.45-0.80) and hypertension (OR = 0.82; 95 % CI 0.68-0.99) compared to persons who attended less than once a year. The findings of this study are the first to suggest religious service attendance may be associated with a lower prevalence of CHD risk factors in Canada.

Attending religious services and its relationship with coronary heart disease and related risk factors in older adults: a qualitative study of church pastors' and parishioners' perspectives.

A qualitative study was undertaken to explain findings of a cross-sectional study of Canadian Community Health Survey (CCHS) 4.1 data showing older persons who attend religious services more than once a week, compared to persons who do not attend at all, have lower prevalences of coronary heart disease (CHD), diabetes and high blood pressure. Twelve semi-structured interviews with ordained pastors and three focus groups with older parishioners from Canadian churches were conducted. Interviews were transcribed and analyzed for emergent themes through a process of direct content analysis. All participants claimed that religious service attendance (RSA): (1) enhances mental health; (2) provides social support and activities; and (3) promotes health and lifestyle behaviours that lower CHD risk. These three themes appear to be underlying mechanisms that help to explain the inverse association between RSA and the prevalence of adverse health outcomes found in the CCHS 4.1 data.

Patients' decision making to accept or decline an implantable cardioverter defibrillator for primary prevention of sudden cardiac death.

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.

Living and dying with heart failure in long-term care: experiences of residents and their family members.

The purpose of this study was to explore the experiences of long-term care (LTC) residents living and dying with heart failure (HF)and their family members. An exploratory descriptive design was used to collect data from seven LTC residents and seven family members. The data was analysed using thematic content analysis. The main themes that emerged from the data were: limited understanding of the HF diagnosis, living with restrictions and other comorbidities, making decisions about transitioning to end-of-life care, and learning and negotiating the lines of communication. Residents and family members communicated with many health-care providers about managing the HF symptoms but most often worked through the nurse when problems arose or decisions about care needed to be made. The findings from this study contribute to our understanding of residents' and family members' experiences in managing residents' HF in LTC.

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.

Readability and content of patient education material related to implantable cardioverter defibrillators.

BACKGROUND: Implantable cardioverter defibrillators (ICDs) are increasingly offered to patients for primary prevention of sudden cardiac death. Candidates for ICD receive ICD-related patient education material when they make decisions to consent or decline a primary prevention ICD. Printed patient education material directed at ICD candidates has not been the focus of direct appraisal. OBJECTIVE: We evaluated the readability and content of ICD-related print education materials made available to patients who were enrolled in a study involving patient decision making for ICD from 3 ICD sites in southern Ontario, Canada. METHODS: All ICD print materials referred to during interviews and/or that were available in ICD site waiting rooms were collected for analysis. Readability testing was conducted using the "simple measurement of gobbledygook" and Fry methods. The material was evaluated according to selected plain-language criteria, thematic content analysis, and rhetoric analysis. RESULTS: Twenty-one print materials were identified and analyzed. Documents were authored by device manufacturers, tertiary care hospitals, and cardiac support organizations. Although many documents adhered to plain-language recommendations, text-reading levels were higher than recommended. Twelve major content themes were identified. Content focused heavily on the positive aspects of living with the device to the exclusion of other possible information that could be relevant to the decisions that patients made. CONCLUSIONS: Print-based patient education materials for ICD candidates are geared to a highly literate population. The focus on positive information to the exclusion of potentially negative aspects of the ICD, or alternatives to accepting 1, could influence and/or confuse patients about the purpose and implications of this medical device. Development of print materials is indicated that includes information about possible problems and that would be relevant for the multicultural and debilitated population who may require ICDs. The findings are highly relevant for nurses who care for primary prevention ICD candidates.

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.

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.

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.