Journal of Cardiovascular Nursing:
Maintaining Hope in Transition: A Theoretical Framework to Guide Interventions for People With Heart Failure
Davidson, Patricia M. RN, BA, MEd, PhD; Dracup, Kathleen RN, DNSc; Phillips, Jane RN, BAppSci; Padilla, Geraldine RN, PhD; Daly, John RN, BA, BHSc, MEd (Hons), PhD
Patricia M. Davidson, RN, BA, MEd, PhD Associate Professor of Nursing, School of Nursing, University of Western Sydney, and Sydney West Area Health Service, Sydney, Australia.
Kathleen Dracup, RN, DNSc Dean and Professor, University of California, San Francisco, Calif.
Jane Phillips, RN, BAppSci Doctoral Candidate, School of Nursing, University of Western Sydney, Sydney, Australia.
Geraldine Padilla, RN, PhD Professor, School of Nursing, University of California, San Francisco, Calif.
John Daly, RN, BA, BHSc, MEd (Hons), PhD Professor of Nursing and Foundation Head, School of Nursing, University of Western Sydney, Sydney, NSW, Australia.
The authors acknowledge the funding of National Health and Medical Research Council Funding 219152.
Corresponding author Patricia M. Davidson, RN, BA, MEd, PhD, PO Box 533, Wentworthville, NSW 2145, Australia (e-mail: firstname.lastname@example.org).
Theoretical frameworks provide a structure for the planning and delivery of nursing care and for research. Heart failure (HF), a condition of increasing prevalence in communities internationally, is responsible for high rates of morbidity, mortality, and great societal burden. The HF illness trajectory can be unpredictable and uncertain. Markers of transition, such as functional decline and increasing dependence, can signal the need for transition to a more palliative approach. This transition challenges clinicians to deliver information and interventions and to support patients and their families not only in relation to their physical status but also in the social, psychological, and existential dimensions. This article describes a theoretical framework, Maintaining Hope in Transition, informed by transition theory, to assist patients to cope with a diagnosis of HF and to guide development of nursing interventions. Transition theory provides a useful context to assist clinicians, patients, and their families adjust to the challenges inherent in a diagnosis of HF and negotiating the illness trajectory. Key factors acknowledged in the Maintaining Hope in Transition framework that determine its utility in models of care for HF patients are (1) acknowledging the changing of life circumstances, (2) restructuring reality, (3) dealing with vulnerability, (4) achieving normalization, and (5) resolving uncertainty. It is likely that incorporation of these factors in care planning, information, and interventions can facilitate patients' and their families' abilities to negotiate the HF illness trajectory, particularly in the advanced stages.
Heart failure (HF) is a syndrome triggered by an inadequate cardiac output and neurohormonal activation.1 The diagnosis of HF often represents a sentinel event in the individual's life experience. This critical event can signify a time for individuals and their families to process new information, to come to terms with their new reality, and to grieve loss of an anticipated future.2 Selder describes these types of sentinel events as trigger events where the individuals perceive the discontinuation of a reality that they previously considered was unchangeable and constant.3,4 A trigger event in the HF illness trajectory could be the time of diagnosis or the realization that there has been deterioration in functional status and a need to forgo an activity that was once common place, such as playing golf or walking to the store. It is in this period of disrupted reality and uncertainty that nurses can assist their patients in finding constancy and peace in confronting new circumstances, particularly in the advanced stages of illness.4
Undeniably, the management of transitions and the ability to support patients and their families in coping and adjusting to the changes marked with passing from old to new circumstances are important in planning nursing care.5 In this article, we explore the concept of transitions and argue the case for a theoretical framework to guide interventions for people with HF-Maintaining Hope in Transition. This framework is of relevance across the HF illness trajectory but has particular relevance in the advanced stages.
Transitions in the Life Cycle
Physiological and psychosocial transitions are an undeniable fact of human life, with each life transition bringing a new set of challenges.6 Transitions imply the moving of one state to another. Meleis and Trangenstein7 define transitions as processes that occur over time and have a sense of time and movement. Transitions often create a need for increased support, as well as changes in responsibility and often social roles.8,9 In some instances, life transitions, such a life-threatening illness, can cause marginalization and promote vulnerability not only for physical reasons but also because of the socioeconomic implications of changed circumstances.10 For example, increased costs for medications or sudden unemployment can alter social relationships and increase the burden on significant others. Kralik confirms the observations of Meleis and Trangestein that living with illness meant being different from "others."7 The perception of being different can erode self-esteem and contribute to a heightened feeling of insecurity and vulnerability. The diagnosis of illness very often means not only physical changes but also psychological, social, and economic losses, particularly isolation and marginalization.10 In planning care, nurses need to be mindful of all of these factors.
Nurses' Roles in Health-illness Transitions
Nurses journey with patients through health-illness transitions in a range of scenarios from birth to death. Transitions can be either developmental, related to stages, or situational (related to illness and changes of social role).11,12 Undeniably, a significant number of nursing interventions are concerned with the experiences of patients who experience transitions.13 Implicit in the appropriate support of patients' transitions is an understanding of the barriers and facilitators needed to promoting successful transitions. These barriers and facilitators can be considered on several levels: the individual, social relationships and systems, or organizational factors. These levels are not discrete and each element influences the other. Table 1 describes the relationship and balance between these dimensions, with specific examples of barriers and facilitators to promote adjustment to circumstance of transition.
Transitions in the HF Illness Trajectory
In the course of the life cycle, individuals experience many transition states, some perceived as positive, such as the increased independence of adolescence, and some with negative connotations, such as aging. Each transition phase brings with it unique challenges to individuals and their significant others.14 People diagnosed with HF are confronted by many factors common to chronic illness, such as alterations in social roles and impairment of functional and cognitive capacity. Significantly, HF is associated with a significant mortality rates and high rates of hospitalization.15 These high rates of morbidity and mortality often force people to confront not only alteration of life circumstances but their own mortality.16,17
Nursing interventions hinge on helping the individual and their family to cope and adjust to their new life situation and to reduce the incidence of adverse events. Many interventions for patients with HF are designed to promote adjustment to the diagnosis and self-care.18 Likely, one of the key factors in the success of these interventions is the nurses' critical role in coordination of care and helping patients and their families adjust to their new circumstances. As HF advances, the transition to the palliative phase is a critical time for appropriate and effective nursing interventions.
The HF Illness Trajectory
In spite of the effective therapies available to treat HF,19 patients struggle to cope with this illness. Many community-based populations of patients are elderly with a significant representation of older women.20 Transitions in developmental and situational dimensions are common in older adults. These transitions relate not only to chronic illness but also to changing social roles and relationships. These people have to not only deal with the burden of HF but also adjust to a range of factors such as loss of a spouse and alterations in living conditions. The combination of aging, comorbid conditions, and HF mean that for many people, palliative care must be added to a disease management approach to HF care. The increasing number of elders with HF in the community underscores the importance of incorporating end-of-life care into HF programs.21,22 The HF illness trajectory is unpredictable with intermittent periods of decompensation and the threat of sudden death, highlighting the importance of nurses preparing patients and their families to deal with these transitions.23-25
Theory to Shape and Direct Nursing Practice
Theoretical frameworks provide a description of circumstances, events, and constructs that provide insight and direct strategies for nursing practice and care delivery.26 Nursing theories can be defined as being either grand, middle range, or situation-specific theories. Grand theories tend to have an overarching perspective, addressing broad theoretical aspects, for example, what is the nature and purpose of nursing, whereas middle-range theories are applicable to a wide variety of nursing situations, such as management of dyspnea. Im and Meleis27 define situation-specific theories as theories that focus on specific nursing phenomena that reflect clinical practice and that are limited to specific populations or to particular fields of practice. Situation-specific theories are placed within specific social and historical contexts. These theories tend to be specific to clinical situations and to map a strategy for nursing interventions.
The Development of Transition Theory
Selder defines a transition occurring "if the disruption of a reality necessitates reorganization or reconstructing the existing one".3(p437) Life transition theory describes how individuals restructure their reality and resolve uncertainty. The transition is considered to be resolved when the uncertainty is resolved and coping and adjustment is achieved. Meleis and Trangenstein argue that using transitions as a framework not only endorses the universal aspects of nursing but also affirms the role of nursing in supporting changes in life circumstances.7,28 The indicators of successful transitions are emotional well-being, role mastery, and well-being of relationships.29 Quality of life, adaptation, functional ability, self-actualization, expanding consciousness, and personal transformation are key to successful transitions.30-32
Transition theory has been used in other chronic disease settings, such as rheumatoid arthritis and multiple sclerosis, to direct nursing practice.4,33 This framework can be considered a structure for facilitating coping during the transformational process that occurs during the transition from one health state to another.34 Transition theory is also specific in its holistic orientation and appreciation of the interplay of physical, social, cultural, and psychological factors.
A Model of Transition Care in Action
Naylor35 defines transitional care as "care and services that promote the safe and timely transfer of patients from one level of care (for example acute to sub acute) or from one type of setting to another (eg, hospital to home)." In a series of studies, Naylor and colleagues36,37 have demonstrated how advanced practice nursing interventions can assist patients and their families adjust to transitional circumstances. Effective discharge planning, clear communication, coordination of services, provision of information, and instrumental support seem to be critical in facilitating care and support of patients and their families during a transition. Many of these principles have been successfully implemented in disease management initiatives in HF management, although they have not been specifically labeled as being derived from transition theory.38 Bull and colleagues39,40 demonstrated that continuity of care and perception of preparedness to manage care after discharge were the greatest predictors of satisfaction with discharge planning.
Using Transition Theory to Understand the HF Illness Trajectory
Once the patient is symptomatic and begins to experience episodes of decompensation, the HF illness trajectory often projects downward.15 The HF trajectory is rendered even more complex as clinicians strive to achieve a balance between maximizing quality and quantity of life. Sometimes these goals seem to be in conflict. Therapies that increase the quantity of life, for example, left ventricular devices, potentially decrease quality of life,41 and other therapies, notably inotropes, have been shown to improve quality of life, yet increase mortality.42 In pursuit of reconciling treatment aims and a desire to improve the quality of care for people with HF, many clinicians have examined models of palliative care and the tailoring of these to meet the needs of people with HF.24,43-45 Of interest, these same therapeutic conundrums are of concern to oncology clinicians and those caring for people with nonmalignant conditions.46
Lynn notes that much of our language about palliative care is taken from an outdated perspective where patients receive curative care until it is no longer effective and then move to palliative or hospice care. However, in contemporary therapeutic paradigms, many of us will not die this way. Instead, individuals are often disabled for months or years by chronic cardiovascular and pulmonary diseases and dementia. Even malignant diseases such as breast and prostate cancer have become chronic diseases requiring implementation of disease management strategies.47,48 This blurring of discrete illness phases mandates guiding and support of patients and families in transition phases that may not be as distinct and clearly defined as previously, where therapeutic options were much more limited.
Using a Transition Model to Integrate Palliative, Supportive Care in HF Management
Embracing a palliative approach as a legitimate and credible transition phase in the illness trajectory is important for nurses caring for patients with HF. In some instances, life transitions can cause marginalization and promote vulnerability. Nurses deal with health-illness transitions in many scenarios and are well placed to assist patients and their families in their phases of adaptation, acceptance, and adjustment. Selder3 writes that not being able to articulate fears, desires, wishes, and questions increases the sense of isolation as the person moves from their previous reality to the current reality. This feeling of isolation may also alter perceptions of risk. For example, an event triggering an episode of acute pulmonary edema in the middle of the night can make bedtime a daunting and fearful experience. Preoccupation with a trigger event can alter future orientations and create preoccupation with an adverse event, similar to posttraumatic stress disorders. This preoccupation and fear can induce anxiety and depression and decrease coping ability. The relationship between psychological factors and clinical outcomes in HF demonstrate that transitions are important not only for nursing practice but also for research.49,50
Achieving normalization through a period of transitions is important in adjusting one's perception of a changed reality.3 Therefore, returning to previous circumstances such as work and social events is important. For example, if the individual is unable to play golf, meeting up with friends in the club house can be important in achieving connection and meaning in life, particularly if they are assisted in articulating what they really enjoy about the time spent with friends. Similarly, strategies to cope with dietary restrictions when eating out can assist in the transition to becoming an HF patient. Selder believes "that normalization reduces uncertainty by establishing behaviors that others exhibit."3(p450) These linkages are important in reducing social isolation and has become one of the reasons for the success of support groups in many clinical practice settings and in cardiac rehabilitation.51 In confronting adjustment to a diagnosis of HF, and particularly end-of-life issues in HF, support groups, if skillfully managed, can be useful in achieving normalization through the transition.
What Can Nurses Do to Help Patients and Their Families in Transition?
The diagnosis of a serious illness, such as HF, can evoke many fears and emotions. Walden and colleagues52 have identified that patients want an honest explanation about their care and express hope for a good quality of life. Importantly, patients want their family and significant others involved in their care. Key factors emerging from the literature about transitions can be summarized in the following points. Patients want:
* acknowledging of the changing of life circumstances;
* restructuring of daily life and expectations;
* help in dealing with vulnerabilities;
* information, support, and incorporation in care planning; and
* support to achieve normalization and resolution of uncertainty.3-5,7,28,32,53-55
Supportive and transitional care in HF is a framework of interdisciplinary care that can be used to support patients and their family and to treat symptoms to enhance quality of life. Supportive care is intended to have a broader scope than palliation of symptoms in advance of death. Supportive care addresses the functional, psychosocial, spiritual, and symptom management issues in advanced heart disease when the focus of care is to promote longevity and when death is near.24 Therefore, in essence, supportive care encapsulates the illness trajectory from diagnosis to death, encapsulating a method of support across the transition phases.
Maintaining Hope in Transition: A Theoretical Framework
On the basis of the theoretical perspectives discussed above, we propose the Maintaining Hope in Transition Model (Figure 1) as a useful theoretical framework for the development of nursing interventions. Hope implies the focusing on a positive future orientation with an emphasis on the individual's ability to cope and adjust.56 This model incorporates a multifaceted approach, considering individual, social, and organizational factors to address how individuals adjust, process, and react to a life-threatening events such as a diagnosis of HF. By adopting a philosophy of hope and control over social circumstances, patients and their families can be assisted in dealing with transitions in health and social circumstances. In this framework, a range of factors such as the clinical condition and level of social support influences how the individual copes and adjusts to a sentinel event, such a period of decompensation. By harnessing the factors facilitating transitions, as described in Table 1, the patient is considered to have significant potential to influence their perception and reaction to life-threatening events. For example, an increase in self-reliance may decrease hospital utilization.
The Maintaining Hope in Transition Model emphasizes the influence of health professionals in influencing the orientation of patients and their families, particularly in respect to eliminating uncertainty through the provision of information and support. The model also recognizes the dynamic interaction between the constructs "hope" and "control" in altering perceptions of well-being and adjustment to transitions.56,57 Both hope and control describe the individual's orientation toward future and anticipated events. The targeting and tailoring of interventions to promote hope and minimize uncertainty may moderate the HF illness trajectory.
Recommendations for Practice and Research
The increasing prevalence of HF mandates closer examination of the illness trajectory. Appreciating the subtleties in transition phases may help to determine the level of disease management intervention a patient may require and specific strategies to promote coping and adjustment. For example, the transition to death in HF is not always gradual but can be abrupt (eg, ventricular fibrillation).58 Thus, there is a need to integrate a palliative approach throughout the illness trajectory not only in the final days of life but also at the time of diagnosis.43 Several investigators have examined the state of end-of-life care.59-62 These studies have revealed the multiple inadequacies of various healthcare systems trying to deal with the transition to end-of-life care for patients with HF and their families. Key areas for further investigation are an examination of models of care to improve transition to end-of-life and the development of interventions that promote skill diversification of practitioners and improvement in communication skills to minimize uncertainty.
In all stages of the HF illness trajectory, pharmacological and nonpharmacological strategies remain extremely important.38 Pharmacological therapies can be augmented by nonpharmacological strategies such as meditation and relaxation. Targeting psychosocial welfare, together with other therapeutics, is another approach worthy of systematic inquiry and research as a method of helping patients and their families negotiate transition phases.
Conclusions and Implications for Nursing Practice
Coping and adjustment to changes in life circumstances is fundamental to the human experience. The smoothness in transition of life circumstances can be facilitated by proficient nursing care and support. It is important that nursing be based on an assessment of individual needs, clinical condition, and available resources. A diagnosis of HF confronts the individual and the family on multiple levels from the impairment of functional activity to existential and spiritual concerns.63 During these times of change or transitions, many patients and their families reach out for direction and support. It is in this very vulnerable stage of the HF illness trajectory that nurses are much needed to provide compassionate and culturally sensitive care. Recognizing the key attributes of transitional states can increase nurses' understanding of the patient's situation and facilitate skillful prescription of interventions and therapeutics.
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