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* BACKGROUND Heart failure nurse specialists strive to optimize patients' outcomes in home-based settings.

* OBJECTIVE To document the activities of home-based heart failure nurse specialists.

* METHOD A modified narrative analysis of clinical notes of home-based heart failure nurse specialists during a 12-month period was used.

* RESULTS Data analysis revealed 7 key activities of home-based heart failure nurse specialists: (1) monitoring signs and symptoms and reinforcing patients' self-management: identifying trends and appropriate action; (2) organization, liaison, and consultation with other health professionals to deal with changes in clinical status," (3) clarifying and reinforcing patients' self-care strategies; (4) assisting patients in their desire to avoid institutionalized care," (5) identifying patients'psychosocial issues: dealing with social isolation; (6) providing support." journeying with patients and patients' families; and (7) helping patients and patients 'families deal with death and dying.

* CONCLUSIONS A major proportion of the activities of home-based heart failure nurse specialists are related to facilitating communication between health professionals and providing information and support to patients and patients 'families. (Am J Crit Care. 2005;14:426-433)

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Improvements in primary and secondary prevention of coronary heart disease and aging of the general population have resulted in an increase in the prevalence of heart failure. (1-4) A growing body of evidence illustrates the important role of nurse specialists in a multidisciplinary approach to management of heart failure. (5,6) Nurse specialists must have an eclectic mix of skills, including advanced clinical assessment skills, excellent communication skills, and an ability to work independently in often challenging scenarios and environments. (7) In a randomized controlled trial, (8) readmissions of patients with heart failure were reduced 56% after implementation of a nurse-directed multidisciplinary intervention. Stewart et al (9) also reported a significant decrease in hospitalizations after a home-based intervention delivered by nurses and pharmacists. Interventions for patients with heart failure are based on strategies that facilitate compliance and adherence along with improved vigilance and self-monitoring of signs and symptoms. (10-12)

Nursing is a diverse profession, and care is delivered in many forms and contexts. The role of expert clinical nurses is pivotal to the delivery of complex biomedical care within a framework of caring and consideration of holistic needs. (13) The nurses who fulfill this role are variously described as clinical nurse specialists, clinical nurse consultants, and nurse practitioners. Documentation and description of the nature of nursing work is often problematic because of the multifaceted and complex nature of the work. (14) Clinical notes written at the moment of care provide a picture of the day-today caring relationship between expert nurses and their patients. Importantly, clinical notes document expert nurses' perceptions of important events, activities, and major concerns of patients and the patients' families.

Method

Analysis of data external to a clinical trial environment permits insight into the challenges of nonselective, usual care practice. (15) In this study, case notes were used to describe the practice, particularly the social processes, involved in the relationship between heart failure nurse specialists and their patients, the patients' family members, and other caregivers. A modified technique of narrative analysis was chosen to determine the nurses' key activities. This technique allows analysis and observation of practice across a wide range of patients and types of interactions. (16) In a similar exercise, Naylor et al (17) used content analysis (18) of patients' records written by advanced practice nurses as the nurses facilitated discharge planning and delivered 4 weeks of follow-up care to elderly patients.

In the study reported here, clinical notes taken during care episodes and interactions were entered into a Microsoft Access database as free text, together with clinical data in a relational database. Nursing interactions incorporated telephone follow-up as well as home visits. The free text was then exported into NUD*IST N5 software (QSR Applications, Doncaster, Australia) to facilitate data management. The data were used to answer the following research questions:

* What were the concerns, issues, and circumstances described by nurses in the case notes and what were their actions?

* What was the role of heart failure nurse specialists?

* What categories did these emergent roles, concerns, issues, circumstances, and actions fall into?

Setting

The study was conducted in a 580-bed community hospital in urban southern Sydney, Australia. Funding was received from the Department of Veterans Affairs in April 2000 to establish a home-based program for veterans and veterans' widows or widowers who had heart failure. The understanding was that nonveterans would be included in the program, and the purpose was to facilitate changes in practice and develop a model of care for patients with heart failure. Ethics approval was obtained from the South Eastern Sydney Area Health Ethics Committee (Southern Section). Clinical care was conducted within an environment of usual care clinical management; a selective research protocol was not used. Patients were enrolled in the program after admission to a hospital for heart failure. The program design was that patients remained in the program for an unlimited period, and the level of service provision was determined by a comprehensive needs assessment, not a prescribed protocol. Levels of interaction ranged from monthly telephone calls to twice-daily home visits. The heart failure nurse specialists were available to patients and the patients' families via a paging service 24 hours a day, 7 days a week.

Sample

A selective, purposive sampling method was used. (19) The sampling of clinical notes was determined by the number of patients enrolled in the home-based program at the time of the 12-month report to the Department of Veterans Affairs. Patients' eligibility for the home-based program was broad and diverse, reflecting real-world clinical practice. (20) No patients were excluded from the program on the basis of cognitive dysfunction, and patients were visited in a variety of settings: the patients' own homes, nursing homes, and hostels. Patients with heart failure of any origin were recruited in accordance with Framingham criteria. (20) Five clinical nurse specialists were involved in the clinical care of patients in the home-based program. All nurses had specialist qualifications in critical care, and each nurse had at least 15 years of nursing experience.

Data themes were verified by heart failure nurse specialists. Content analysis was used to analyze the data, because it is useful in exploring processes, relationships, and dynamic phenomena. (21) Transcripts were analyzed by using the constant comparative method, and the analysis was facilitated by memos. (22) In the initial phase, open coding was used, and subsequently key concepts were identified and developed. Similar incidents, reflections, and comments were grouped into categories. Concepts and constructs that emerge from the data were tested and authenticated with nurse specialists by using comparative analysis. This systematic approach was useful in exploring activities of the nurses. (22)

Results

At the time of the 12-month report, 255 patients were enrolled in the home-based program. Case-note data covered 2460 interactions with patients of the nurse specialists and the patients' families and healthcare providers. The patients' characteristics (see Table) were representative of community populations of patients with symptomatic heart failure; a considerable proportion had preserved systolic function. (22) This group was an elderly cohort; the median age was 81 years (range 31-100 years), and 46.3% were female. English was not the first language for 25% of patients, reflecting the cultural diversity of the community. Case-note documentation revealed transactional as well as interactional phenomena. (23) Seven primary themes emerged from the data describing the activities of the nurse specialists. These themes are described along with verbatim extracts to illustrate the themes, document interactions, and provide insight into activities and clinical decision making.

Monitoring Signs and Symptoms and Reinforcing Patients' Self-Management: Identifying Trends and Appropriate Action

The unpredictable course of illness among patients with heart failure dictates an approach of vigilance, particularly in elderly patients with comorbid conditions. Despite best intentions and a foundation of information and education, achievement of self-care behaviors is problematic. Clinical note entries predominantly depicted a review of clinical signs and symptoms, indicating that this role is a central one of heart failure nurse specialists.

It is apparent that in addition to assessing clinical signs and symptoms, the nurse specialists processed this information within the context of each patient's clinical condition and in relation to the patient's usual activities. Nursing actions were prioritized within this context.

Organization, Liaison, and Consultation With Other Health Professionals to Deal With Changes in Patients' Clinical Status

Documentation of clinical interactions reveals the complexity of management of patients with heart failure. Clinical vignettes indicate the intricacy of management, the occurrence of comorbid conditions, and the involvement of multiple health professionals. The important roles of vigilance, liaison, consultation, and communication are illustrated:

The preceding extracts denote close clinical scrutiny of patients' clinical conditions and derivation of diagnoses in the context of clinical signs and symptoms. Referral, collaboration, and communication with other health professionals are also apparent.

Clarifying and Reinforcing Patients' Self-Care Strategies

The importance of promoting patients' self-care strategies is well established in heart failure management. (10,11) Activities documented in clinical notes reflected the need for nurses to continually clarify, reinforce, and individualize information for patients with heart failure, particularly within the context of comorbid conditions.

Assisting Patients in Their Desire to Avoid Institutionalized Care

Despite a feeling of isolation, many patients appeared to struggle to maintain independence and remain in their home. Attempts to facilitate preemptive hospitalization were often refused. Such a situation most likely infers a burden of responsibility on nurse specialists as they struggle to maintain patients' safety and comply with the wishes of patients and the patients' families.

Identifying Patients' Psychosocial Issues: Dealing With Social Isolation

The patients in the study were elderly patients, and the majority of them lived alone. Fear of decompensation, worsening signs and symptoms, comorbid conditions, and transport difficulties contributed to social isolation.

The high rate of psychological and social distress, documented in other studies, (24) is illustrated by the preceding vignettes.

Providing Support: Journeying With Patients and Patients' Families

Transcripts revealed the important role of nurse specialists in providing support not only to patients but also to the patients' family members and to health professionals. The presence of a nurse specialist appeared to provide comfort, continuity, and security to patients. In several entries, emotional dependence on the nurse specialist was evident. This dependence has important implications for the establishment of professional boundaries and facilitation of opportunities for debriefing and support of staff.

Helping Patients and Patients' Families Deal With Death and Dying

Analysis of clinical notes revealed the important role of nurse specialists in helping patients and patients' families deal with end-of life issues. Nurse specialists were obviously sought out to decipher and interpret information and to assist patients and patients' families in making decisions.

Discussion

The activities of heart failure nurse specialists are dynamic; the nurses are responsive to clinical changes and support patients and patients' families. The nurses' activities occur within a framework of expert clinical knowledge in home-based management of heart failure. This interpretation is supported by the emergent concepts and processes derived from this study: observation of patients' self-care deficits and assistance in promoting patients' self-care strategies; expert clinical assessment and knowledge; consultation with other health professionals; monitoring of levels of dependence; advocacy for patients, filtering and interpreting information (clinical, social, and situational); facilitation of continuity of care and instrumental and social support for patients and patients' families.

Documentation of the activities of heart failure nurse specialists reflects the multifaceted nature of expert practice. (25,26) Parallel with expert clinical assessment and the advanced practice role is evidence of sensitivity, understanding, and journeying with patients and patients' families as the illness progresses. Clinical notes reveal variability in patients' adherence to self-care strategies and a need for vigilance and reinforcement to promote patients' self-care behaviors. Dealing with these changing circumstances reveals an expert, dynamic, and proactive practice with interventions and actions predicated by the changing conditions and demands of patients. Examination of the practice of heart failure nurse specialists reflects appropriate responses to a dynamic clinical condition and the individualization of care plans according to the preferences of patients and physicians.

Our findings concur with those of other studies (27-31) in that self-care, compliance, and vigilance are primary issues in the management of patients with heart failure. The description of activities of heart failure nurse specialists has implications for models of nursing care, discharge planning, and community follow up. Importantly, this snapshot of the activity of expert heart failure nurses provides insight into the complexity of the role. Measurement of nursing workload is inherently problematic, and the assumption that nursing is a linear activity is erroneous, because nurses commonly perform a number of activities simultaneously. Nursing workload is often contextual and not easily measurable. (32) Analysis of case notes provides insight into the "hidden" work of nurses in caring for chronically ill patients; traditional outcome measures such as morbidity, mortality, and rehospitalization do not accurately reflect the scope and attributes of expert nursing care.

Emergence of the theme of assisting patients in their desire to avoid institutionalized care has particular significance for the aging of our society and the provision of service. Although the general population is becoming increasingly old, many persons do not want institutionalized care. (33,34) Dealing with end-of-life issues, delivering care in isolated home environments, and supporting patients and their families during the course of a chronic illness can place a great burden on nurses. The apparent dependence of patients on the nurses in this study reveals a need for nurses to receive collegial support, clinical supervision, and measures to ensure maintenance of professional boundaries. The social isolation evident in many of the case note entries illustrates the important role of community-based nurses in maintaining patients' connection with the outside world. Importantly, in many instances, nurses in this study functioned as confidantes, conduits to services, and sources of expert opinion.

Death is inevitable as heart failure progresses. (35) Patients in home-based programs often have New York Heart Association class III or IV disease, are elderly, and are coming to the end of life. The challenge evident for heart failure nurse specialists is to deliver care with hope and optimism but within a scope of realism and preparation for the inevitability of death. Analysis of case notes reveals that a significant role of community-based heart failure nurse specialists is to prepare and support patients and patients' families at the end of life. End-of-life care was often performed in conjunction with palliative care services. (35) The rapport and intimacy were evident in the analysis of interactions between patients and nurses, and there was a strong sense of continuity associated with presence of nurse specialists along the care continuum. Contact was maintained with patients and their families during periods of decompensation across care environments, ranging from the intensive care unit to the nursing home and hospice.

Study Limitations

The purpose of the study, to derive rich, contextual data to provide insight into the activities of heart failure nurse specialists, influenced the choice of study design. Purposive sampling and the setting of an urban, Australian healthcare system potentially limit the ability to generalize findings to other settings. In addition, analysis of clinical notes external to interactions with patients during the delivery of care may alter the perception of events and omit important contextual information that can be obtained by other methods, such as ethnography. (36) We sought to overcome this limitation by verifying data and events with heart failure nurse specialists. The contemporaneous nature of clinical notes favors an accurate determination of events, and this study reflects the perceptions and interpretations of nurses, not necessarily those of patients. We think that using a large number (n=2460) and broad spectrum of clinical interactions to facilitate generation of data countered the limitations just described and justified use of the methods we chose.

Implications for Practice

Contemporary trends toward role diversification, particularly in management of patients with heart failure, convey critical care nurses beyond the structured and supported boundaries of the intensive and coronary care units. Consequently, the dynamics and attributes of clinical practice in areas such as the home environment need to be understood. Clearly, heart failure nurse specialists must have an eclectic mix of skills, from clinical assessment skills to communication and negotiation skills. Appreciation of this experience is important in curriculum development, theory generation, and domains and dimensions of clinical practice. Because most of the information that influences cardiovascular nursing practice is derived from the acute care setting, a need exists to articulate and describe models of care to enhance nursing practice in novel settings. The modified narrative analysis method we used reveals the individualized experience of the patients in dealing with heart failure and the nurses' response to these occurrences. A growing body of evidence affirms that using heart failure specialists results in improvements in patients' outcomes. (7) Importantly, many of the elderly persons serviced by these programs cannot access institutionally based models of care, such as specialty heart failure clinics, largely because of transport issues and frailty. (6-9) The description and exploration of the role of heart failure nurse specialists provides insight into key activities, responsibilities, and attributes needed to perform this challenging, expert nursing role. Information derived from this study should assist in preparing nurses for advance practice and should influence the research agenda for homebased management of heart failure.

ACKNOWLEDGMENTS

We acknowledge funding from the Department of Veterans Affairs in the conduct of this project, in particular the support and encouragement of Mr Henry Bruninghausen. We also acknowledge Ms Phyllis Moran, former nursing and patient services manager, Dr David Ramsay, Esther Ang, CNS, Elizabeth Connelly, CNS, Juhe Webster, CNSs, and Brooke Ashton, CNS. for their significant contributions to this project.

Commentary, by MaryJo Grap (see shaded boxes).

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Patricia Davidson, RN, ITC, BA, MEd, PhD, Glenn Paull, RN, CCU, Cert BN (Hons), David Rees, MBBS, FRACP, PhD, John Daly, RN, BA, BHSc, Med (Hons), PhD, Jill Cockburn, Msc, PhD. From the University of Western Sydney (PD, JD), The St. George Hospital (GP, DR), Sydney, Australia, and The University of Newcastle, Newcastle, Australia (JC).

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