Patricia H. Strachan

Caregivers’ contributions to heart failure self-care: A systematic review:

Aims: The purpose of this study was to conduct a systematic review answering the following questions: (a) what specific activities do caregivers (CGs) contribute to patients’ self-care in heart failure (HF)?; and (b) how mature (or developed) is the science of the CG contribution to self-care? Methods: MEDLINE, EMBASE, Cumulative Index of Nursing and Allied Health Literature (CINAHL), the Cochrane Library and ClinicalTrials.gov were searched using the terms heart failure and caregiv* as well as the keywords ‘careers’, ‘family members’ and ‘lay persons’ for studies published between 1948 and September 2012. Inclusion criteria for studies were: informal CGs of adult HF patients–either as dependent/independent variable in quantitative studies or participant in qualitative studies; English language. Exclusion criteria for studies were: formal CGs; pediatric, adult congenital, or devices or transplant CGs; mixed diagnosis; non-empiric reports or reports publishing duplicate results. Each study was abstracted and confirmed by two authors. After CG activities were identified and theoretically categorized, an analysis across studies was conducted. Results: Forty papers were reviewed from a pool of 283 papers. CGs contribute substantively to HF patients’ self-care characterized from concrete (weighing the patient) to interpersonal (providing understanding). Only two studies attempted to quantify the impact of CGs’ activities on patients’ self-care reporting a positive impact. Our analysis provides evidence for a rapidly developing science that is based largely on observational research. Conclusions and implications of key findings: To our knowledge, this is the first systematic review to examine CGs’ contributions in depth. Informal caregivers play a major role in HF self-care. Longitudinal research is needed to examine the impact of CGs’ contributions on patient self-care outcomes.

Determinants of effective heart failure self-care: a systematic review of patients’ and caregivers’ perceptions

Context Disease management interventions for heart failure (HF) are inconsistent and very seldom incorporate the views and needs of patients and their caregivers into intervention design. Objective and data To improve intervention effectiveness and consistency, a systematic review identified 49 studies which examined the views and needs of patients with HF and their caregivers about the nature and determinants of effective HF self-care. Results The findings identify key drivers of effective self-care, such as the capacity of patients to successfully integrate self-care practices with their preferred normal daily life patterns and recognise and respond to HF symptoms in a timely manner. Conclusions Future interventions for HF self-care must involve family members throughout the intervention and harness patients’ normal daily routines.

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.

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.

Overcoming the challenges of conducting research with people who have advanced heart failure and palliative care needs

Research on the palliative care needs of heart failure patients is scant and requires development to provide a sound evidence base for improved care; but there are distinct practical and ethical challenges in conducting research with this population. This paper presents an integrative review of the literature that aims to describe these challenges and discuss potential strategies by which they may be addressed. It is recognised that heart failure is a volatile condition making identification of the end of the life phase difficult. This leads to an array of other issues; firstly clinical teams tend to use this as a rationale for their failure to discuss palliative care issues with patients and families, making identification of the population difficult and research related communication challenging. Symptom volatility also creates methodological problems for researchers in deciding patients’ eligibility, securing user involvement and contributes to sample attrition in research. There are also substantial ethical challenges for researchers in terms of gaining access and ensuring patient autonomy in this population. Acknowledgement of these issues and discussion of strategies by which they can be addressed has the potential to augment clinical research, develop practice and ultimately produce the much needed improvements in patient care required for those with advanced heart failure.

Effective communication and ethical consent in decisions related to ICDs

This Review examines recommendations and principles that promote good decision-making with regard to the insertion, deactivation, and potential malfunction of implantable cardioverter-defibrillators (ICDs). This guidance is important because ICDs are now used for primary and secondary prevention of arrhythmias in more than 20 diverse clinical populations, which accounts for the exponential increase in insertion rates over the past decade. Current guidelines require clinicians to provide personalized, culturally appropriate, and easy to understand information to patients on the benefits and harms of proposed treatment choices; however, obtaining valid informed consent for insertion and deactivation of ICDs is challenging. Initiating early conversations with patients and continuing this dialogue over time, implementation of localized care protocols, increased collaboration (particularly between cardiac and palliative care teams), and the provision of training for all health professionals involved in the care of these patients, can help to ensure that adequate informed consent is maintained throughout their care. In addition to providing information, health professionals should identify and address high levels of anxiety in patients and their next of kin and promote effective communication throughout decision making. In the future, use of standardized checklists or decision aids based on a clear understanding of the principles underlying key topics could support this process.

The importance of interactions between patients and healthcare professionals for heart failure self-care: A systematic review of qualitative research into patient perspectives:

Background: Effective heart failure (HF) self-care can improve clinical outcomes but is dependent on patients’ undertaking a number of complex self-care behaviors. Research into the effectiveness of HF management programs demonstrates mixed results. There is a need to improve understanding of patient perspectives’ of self-care need in order to enhance supportive interventions. Aim: This paper reports selected findings from a systematic review of qualitative research related to HF self-care need from the patients’ perspective. The focus here is on those facets of patient-healthcare professional relationships perceived by patients to influence HF self-care. Method: We searched multiple healthcare databases to identify studies reporting qualitative findings with extractable data related to HF self-care need. Joanna Briggs Institute systematic review methods were employed and recognized meta-synthesis techniques were applied. Critical realist theory provided analytical direction to highlight how individual and contextual factors came together in complex ways to influence behavior and outcomes. Results: Altogether 24 studies (1999–2012) containing data on patient-healthcare professional relationships and HF self-care were included. Interaction with healthcare professionals influenced self-care strongly but was notably mixed in terms of reported quality. Effective HF self-care was more evident when patients perceived that their healthcare professional was responsive, interested in their individual needs, and shared information. Poor communication and lack of continuity presented common barriers to HF self-care. Conclusion: Interactions and relationships with clinicians play a substantial role in patients’ capacity for HF self-care. The way healthcare professionals interact with patients strongly influences patients’ understanding about their condition and self-care behaviors.

Understanding Palliative Care on the Heart Failure Care Team: An Innovative Research Methodology

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.

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.

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.