Heart & Lung: The Journal of Acute and Critical Care
Volume 32, Issue 1 , Pages 32-40, January 2003

Qualitative analysis of living with heart failure☆☆☆

University of Louisville School of Nursing, Louisville, Kentucky

Article Outline

Abstract 

Background: The incidence of heart failure has been described as epidemic in proportion. Although literature abounds surrounding issues of epidemiology, pathophysiology, and treatment issues for those with heart failure, little is known about the day-to-day experiences of adults living with this chronic illness. Objectives: The purpose of this study was to describe and analyze the experience of adults who are living with heart failure. The specific aims were to describe the problems, challenges, and processes of living with heart failure, to identify strategies and tactics adults use to live with heart failure, and to provide a model that articulates what the participants described. Methods: Principles of naturalistic inquiry were used to describe problems, challenges, and processes of living with heart failure. Six women and 5 men participated in in-depth interviews that lasted from 40 minutes to 100 minutes. Data were collected and analyzed with the constant, comparative method. Results: Participants' use of language referring to wind and water in describing their heart failure symptoms led to discovery of navigating and aspects of navigational science as metaphors for living with heart failure. The 3 main categories of the resulting model were called experiencing turbulence, navigating, and finding safe harbor. Conclusions: Use of the model for living with heart failure may provide for creation of interventions for adults to improve their ability to manage their own care in the face of this potentially devastating illness. (Heart Lung® 2003;32:32-40.)

 

Heart failure has been described as “a new epidemic”1 in the United States, with more than 2 million American men and women living with the diagnosis of heart failure and roughly 500,000 new cases diagnosed each year.2 Although literature abounds surrounding issues of epidemiology, pathophysiology, and treatment issues for those with heart failure, little is known about the day-to-day experience for adults living with this potentially devastating chronic illness. The primary goal of this qualitative study was to gain an understanding about what it is like to live with heart failure. Critical to this study was the focus on the processes of the day-to-day living with heart failure.

Complex medication therapies, dietary changes, and symptom recognition are some of the many changes required for those who live with heart failure.3, 4, 5 Furthermore, it has been recognized that frequent, and often preventable, hospitalizations are problematic to people with heart failure.6, 7 Dracup et al3 attributed the prevalence of high morbidity and unnecessary hospitalizations to the problem of noncompliance. The authors proposed that, although patients recognize the major lifestyle changes necessary for them and their families, they might not adhere to their prescribed treatment as a result factors such as lack of understanding, lack of conviction about or actually forgetting the treatment, or financial or other constraints.

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Symptoms and self-management 

Researchers have reported decreased quality of life resulting from a range of physical, psychologic, and social symptoms in adults with heart failure.8, 9, 10 Friedman11 reported the physical symptoms most commonly associated with heart failure include dyspnea, paroxysmal nocturnal dyspnea, edema, palpitations, chest pain, orthopnea, and cough. Nurse researchers also have documented the symptom of fatigue as it relates to heart failure.12, 13 Beyond the physical symptoms of heart failure, its emotional and social effect has been widely reported, particularly from the perspective of its effects on well-being and quality of life. Adults with heart failure have anxiety and depression,14, 15, 16, 17 significant impairment of social and leisure activities,17, 18 and decreased sexual functioning.19 When compared with those who have a variety of other chronic illnesses, people with heart failure had poorer social and role functioning and poorer perceptions of their own health.20

Much of the literature addressing symptom recognition and management is not framed from the perspective of the affected person. Rather, it is framed from the perspective of the need for adherence to pharmacologic and other regimens or interventions to enhance adherence and symptom management to improve outcomes.21, 22, 23 Dunbar, Jacobson, and Deaton24 stressed the use of specific strategies to improve self-management in patients with heart failure. They urged going beyond traditional approaches to patient education by integrating specific teaching content with self-monitoring behaviors such as daily weight monitoring and diuretic dosage adjustment on the basis of weight.

Clark and colleagues25 proposed that self-management has a positive effect on both physical and psychologic health status. They described self-management as the day-to-day tasks people undertake to control or reduce the effect of disease on their health status. Although providers have emphasized disease management, they have not adequately assisted people with chronic illness in dealing with the emotional and life-altering effects of the illnesses.26

Recognizing the profound effect of heart failure on the health of Americans, the Agency for Health Care Policy and Research convened a multidisciplinary panel of experts and charged them with analyzing the current state of the science regarding heart failure. Konstram et al27 challenged researchers to determine whether affected persons could play a more active role in managing their own care.

Although the notion of self-care (in the language of “taking care of yourself”) has been advocated in nursing and the popular culture for years, the advent of managed care has increased the urgency of exploring the process of incorporating “caring for yourself” into daily living. Compounding the urgency is the prediction that as the population of the United States ages, cases of heart failure will increase the pressure placed on an already strained health care system28. People with chronic illnesses in general and heart failure in particular are being challenged to do more and more on their own behalf.

Missing from the literature is a description from the affected persons' perspective of the effects of heart failure on their daily lives and the identification of what they are doing on their own behalf (as opposed to what they are not doing). As health care delivery continues to migrate from the hospital to the home, and as patients and families continue to take on more responsibility for complex care, there is a compelling need to identify the problems, challenges, and processes of living with a failing heart. Nurses need to determine how adults with heart failure meet those challenges by identifying the actions that they are taking on their own behalf.

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Purpose 

The purpose of this naturalistic study was to explore the experience of living each day with heart failure. The specific aims were to describe the problems, challenges, and processes of living with heart failure, to identify strategies and tactics adults use to live with heart failure, and to provide a model that articulates what the participants described.

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Participants 

Inclusion criteria included the following: patients were (1) diagnosed with heart failure, (2) undergoing medical treatment for heart failure, (3) English speaking, and (4) 40 years of age or older. Participants were recruited from a local hospital, a visiting nurse association, a mall health center, and professional referral. Human subject approval was obtained through the appropriate institutional review boards.

In this study, fieldwork involved the cyclic process of data collection and analysis during approximately 11 months. Principles of purposive and theoretic sampling were used throughout the course of the study.29, 30 Participants were selected to allow diversity of ages, gender, and ethnicity to capture information-rich data that could be used for extrapolation of patterns and themes central to the heart failure experience rather than demographics.

Five men and 6 women participated in the study. Four of the women were African American, and the rest of the participants were white. Participants were homogeneous in terms of initial inclusion criteria but varied in terms of age, ethnicity, gender, and the precise etiology of heart failure. Age of participants ranged from 50 to 81 years, with a mean age of 67 years. Estimated time since diagnosis of heart failure varied from approximately 1 to 6 years (mean, 3 years).

The number of medications prescribed ranged from 4 to 14 (mean, 7.8) medications each day. This account did not include oxygen, “as needed” medications, or those medications taken less frequently than daily. For many of the participants, the medications were added to already complex medical regimens (for example, frequent glucometer readings with sliding scale insulin doses).

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Data collection 

All interviews were conducted in participants' private residences. Interviews varied in length from 40 minutes to 100 minutes. Data were collected primarily with the use of audiotaped interviews and fieldnotes. Transcriptions of tapes were verified to determine accuracy of transcription.

Interviewing strategies included the use of a semi-structured interview guide on the basis of a review of literature, preliminary study activity, and guidance from professional colleagues. Questions addressed issues surrounding the effect of being diagnosed with heart failure as well as experiences of living with heart failure. Examples of questions used during the interviews included the following: “Tell me about what it was like when you were first diagnosed with heart failure” and “Tell me how your daily life has changed since you became aware of your heart problem.” Additionally, general demographic data and specific questions regarding medical and medication history were asked. Questions were revised after the third interview to verify and clarify emerging categories.30

Guba and Lincoln31 recommended a variety of techniques to enhance trustworthiness in naturalistic inquiry. Member checks were vital, particularly in terms of applying and validating concepts that were derived from navigational science. Additionally, peer debriefing was a source of ongoing confirmation of the data coding and analysis. Transferability was supported with the use of thick description of data to allow the potential user of the theory to determine whether it would be appropriate in a different context. A personal diary, with handwritten, typed, and tape-recorded notes, provided documentation for the audit trail. Additional reflexive notes and theoretical memos evolved as handwritten notes, taped analysis, and word processing files to enhance dependability and confirmability.

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Data analysis 

The technique of constant, comparative analysis was used to generate the major conceptual categories. The first phase of analysis involved open coding.30 As the coding process proceeded, categories were developed. For example, participants' terms and phrases referring particularly to water and to lack of wind (eg, “choppy breathing,” “huffing and puffing,” “blowing,” or “gallons of water come off me”) emerged from the data. Symptoms that participants were most clearly able to associate with heart failure emerged as problems of “too much water” and “not enough wind.”

The presence of terms relating to the elements of water and wind, as well as codes such as “riding it out” and “seeking calm,” warranted use of the technique of enhancing theoretic sensitivity that Strauss and Corbin30 describe as “far-out comparisons.” Several nontraditional literature sources provided the springboard for comparison of nontraditional concepts to the data. For example, The Perfect Storm: A True Story of Men Against the Sea by Sebastian Junger32 and Microsoft Bookshelf 98, a CD-ROM based Reference Library,33 were used to explore concepts related to wind and water. Additionally, basic navigational literature was explored and used predominantly as a sensitizing concept.

Following the review of navigational literature, 2 participants were re-interviewed and 2 additional participants were interviewed to further clarify and develop emerging themes that provided the structure for the model of living with heart failure. One participant's background as a member of the United States Navy during World War II was influential as he compared his own experiences of living with heart failure with his experiences living at sea. He gave examples from his own experience that supported the developing model. Following verification of the basic concepts, it was determined that no new patterns or themes were emerging in the interviews, and data collection was concluded.

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Findings 

Three key categories emerged as a result of data analysis representing the experience of living with heart failure: experiencing turbulence, navigating, and finding safe harbor (Table I).

Table I. Categories and subcategories
Experiencing turbulence
Experiencing physical turbulence: “Where you feel like you are drowning.…”
Experiencing emotional turbulence: “I get excited easily.…”
Experiencing social turbulence: “I miss the playing of life.…”
Navigating
Determining position
Use of “dead reckoning” to determine position: “If I take my medicine, then I should be.”
Use of the “stars” to determine position: “I know I should … but …”
Use of technology to determining position: “I weighed 200 this morning and 202 yesterday.…”
Use of markers to determine position: “I'm more tired than other people.…”
Charting the course
Analyzing prevailing circumstances to chart the course: “I have to go along with the family.…”
Forecasting to chart the course: “It takes me about 2 days to get back to normal.…”
Use of a map to chart the course: “I would be interested if I had something to read about it.…”
Operating
Use of Positive Self-care behaviors: “I try to walk every morning.…”
Use of Negative Self-care behaviors: “You grab a cigarette and it helps to calm you down.”
Being piloted
Relying on the care of others: “The pilot tells you how to go and where to turn.…”
Finding safe harbor
Feelings of safe and calm
Use of navigational aids
Human resources: personal “God has helped me a whole lot too”
Human resources: technical “Bathroom scale”

Experiencing turbulence 

All participants in this study experienced at least some degree of turbulence as a result of heart failure. Traditionally, turbulence is associated with terms such as “turmoil,” “commotion,” “excitability,” and “storm.” The descriptor turbulence emerged as participants reported challenges they faced in their lives. Turbulence reflects the intensity of the symptoms they described. Participants reported a range of experiences associated with turbulence, from life-threatening emergencies to feeling bored and frustrated. Experiencing turbulence had 3 subcategories: physical, emotional, and social turbulence.

Experiencing physical turbulence 

As participants distinguished their heart failure experience from other chronic illnesses they faced, they reported symptoms of heart failure related to problems of increased fluid and difficulty breathing. The major elements of experiencing physical turbulence are water and wind. Participants expressed problems and challenges of water with heart failure using descriptions such as too much “fluid” or “liquids.” Water was associated with problems of breathing, weight gain, swelling, and the effects of diuretic therapy. Phrases such as “forty pounds come off me in one week” or “I was sleeping and I woke up and sweat was pouring off me like somebody had a bucket and was pouring it” described problems of water associated with heart failure. One man referred to a feeling of “drowning” to describe episodes of his heart failure experience:

When you can't breathe and you wonder what the hell, what do you mean I can't breathe? …And the feeling is…like being under water and you can't breathe.

Participants also associated a variety of problems and challenges of heart failure with inability to breathe normally (problems of wind). Shortness of breath was described with the use of general terms such as “short-winded,” “gasping,” “huffing and puffing,” “blowing,” and more technical terms such as “breathlessness.”

Experiencing emotional turbulence 

In addition to the physical symptoms related to water and wind, participants reported that living with heart failure brought problems and challenges of intense emotions. Participants reported feelings of fear, boredom, frustration, impatience, depression, guilt, and jealousy. These turbulent feelings were associated with the inability to “do” as they had in the past and with experiencing emergent events.

The most compelling stories of experiencing emotional turbulence related to traumas that participants experienced either within the hospital or before and during “911” calls. Participants reported episodes of hypotension, life-threatening arrhythmias, and complications of medical procedures. One man dramatically reported an experience that resulted from an episode of a disturbance in his heart rhythm:

I was blacking out, had breathlessness, so 911, here they come and the boys came in. They immediately had their big black battery with them and they gave me a jolt, the cardioversion, and of course, I'm not out so I found out how interesting it was, to have a cardioversion while you're conscious see. It's really weird. It's like being electrocuted, your eyeballs feel like they're being fried and bulging out hard-boiled. You had smoke coming out of your ears and fire out of your nose, oh my God, for just a nano-second you can't believe the traumatic event that's happening, and you yell out, instinctively you let out a loud yell. I said “oh Jesus; did you tell them they could do that?”

Experiencing social turbulence 

People with heart failure have changes in their social and work lives as well as in their ability to “play.” Activities once highly valued such as working, attending church, grocery shopping, and socializing with family and friends were ultimately altered as a result of their heart failure. Being unable to perform at previous levels of activity was associated with a great deal of loss and grief. Losses experienced by not being able to “do like I used to do” ranged from the simple daily routines of dusting, doing laundry, and washing dishes, to those involving social interaction such as going to church, shopping, “partying,” and being with one's spouse.

The most common form of medication therapy for these adults with heart failure, use of loop diuretics, also significantly affected their ability to participate in social activities. People with heart failure in this study spent approximately 3 to 4 hours each day responding to the effect of diuretic therapy: urinary frequency. Although use of loop diuretics affected social lives of the participants, diuretic therapy was believed to have a beneficial effect. As one man emphasized, “I would much rather go to the bathroom 40 to 50 times a day than I would [have trouble] trying to breathe.”

Navigating 

People with heart failure develop a variety of strategies and tactics to enhance their ability to deal with the conditions of turbulence in their lives. The term navigating emerged to describe the strategies and tactics involved in managing heart failure with the recurrence of language referring to themes of water and wind used by the participants.

Like those who navigate ships at sea under changing conditions of water and of wind, the participants developed strategies and tactics to adjust to their changing health status. In navigational science, the criteria for what is described as successful navigating are predicated on the ability of the navigator to determine his or her own position accurately, to plan or chart his or her course of action, and finally to operate the ship.

Determining position 

To successfully navigate, the individual must first determine his or her position or answer the question, “where am I?” Participants reported a variety of strategies for determining their position or health status. Participants with heart failure reported 4 primary techniques of determining their current position: (1) dead reckoning, (2) use of predetermined standards or “by the stars,” (3) use of technology, and (4) use of markers. Each technique enhanced their ability to assess their health status.

Charting the course 

Charting the course is an aspect of navigating in which the individual answers the question, “Where am I going.”34 For people with heart failure, a variety of strategies, including analyzing prevailing circumstances, forecasting outcomes, and use of a map or chart, affected their ability to plan their day.

A major aspect of charting the course for people with heart failure was analyzing prevailing circumstances. Life did not stop for the participants, despite the diagnosis of heart failure. Prevailing life circumstances affected the participants' abilities (physically, emotionally, and socially) to participate in self-care activities. Additionally and importantly, in some situations, maintaining health and engaging in self-care activities were not priorities in prevailing circumstances. For example, one woman was attempting to cope with several major family concerns as well as symptoms of heart failure: “Like my daughter, she is going to prison.… I can't let it worry me, my two boys they are locked up…and my husband is locked up, and I can't let all that worry me.”

Forecasting is the skill of predicting likely outcomes that could be anticipated should certain actions be taken. The forecast may be positive or negative. The participants' predictions or forecasts affected how they made decisions, especially when considering their participation in outside activities. At the time of his diagnosis, one man believed that he could work, despite his physician's recommendation to retire. After several attempts to maintain his previous level of activity, he concluded that his physician was correct and that, indeed, he was unable to work as before. As a result, he forecasted that if he significantly decreased his time spent at the office and did only the kind of work that he liked, he could safely participate in certain professional activities without undue physical effort.

Seidman34 stated that the chart (or map) is the “most important tool the navigator has…. In fact, navigation as we know it can't be practiced without one.” In stark contrast to the amount of information available to a navigator at sea, only 2 of the participants reported the use of written information directly received from health care professionals to guide them in planning their days. The majority of people relied on oral communication from providers and friends rather than written information. Additionally, print and television media were sources of information that influenced care and decisions about self-care.

Operating 

Operating is a result of determining position and charting the course. Operating refers to the series of self-care activities or skills that the participants with heart failure engaged in to deal with the phenomenon of turbulence. Operating begins to answer the question, “how do I get there.”34 Self-care behavior ranged from positive (to minimize, manage, or prevent turbulence) to negative (behaviors that may be directed at minimizing, but actually increased turbulence). Participants reported a range of positive self-care behaviors (eg, taking medications as directed, making appointments with the physician, weighing daily, and avoiding cigarettes).

Several participants also reported the use of negative self-care behaviors primarily to help them “calm down” (minimize turbulence). Examples of negative self-care behaviors included smoking cigars or cigarettes or “taking a [food] binge.” Both smoking and overeating were reported as solutions that provided immediate treatment for feelings of frustration and boredom.

Being piloted 

During times of high degrees of physical, emotional, or social turbulence, participants reported the need for reliance on others-in other words, being piloted. Others may need to carry out navigational skills on behalf of the person with heart failure. The pilot's essential skills include the abilities to determine position (assess), chart the course (plan), and operate (act). A significant other or a health care provider may act as a pilot, depending on accessibility and skill, during times of increased turbulence. Having others involved in determining a participant's position was crucial during periods of high degrees of uncertainty. Throughout the stories of living with heart failure, the influence of others during times of turbulence was critical. Participants reported a variety of circumstances in which they needed help from others, particularly during life-threatening emergencies.

Some of those who served as pilots were health care providers with less than adequate skills. Participants reported painful procedures, multiple intravenous punctures, and improper medication scheduling, all of which affected their confidence in providers. Although they expected the providers to help them during times of increased need, the providers were not always perceived as skilled. For example, one man talked of experiences in the hospital:

Those nurses drove me crazy when I was in the hospital…with all that medicine they don't know what they are doing. They give me a little bit here and little bit there, and I said, “why don't you give me all of them at one time like I am supposed to do.” I even wrote down one time when I am supposed to get before breakfast and at lunch and at supper and at nine o'clock, I wrote it all down…and she still didn't get it right.

Finding safe harbor 

The final category that emerged from data analysis was described as finding safe harbor. Strategies and tactics of navigating by people with heart failure were directed at moving the person from the problems and challenges of turbulence to finding safe harbor. The term harbor is often associated with shelter or a refuge. Importantly, the concept of harbor can also be associated with being safe. In a thesaurus, safe is associated with water as “being in harbor, in port, at anchor” and “above water, high and dry”33. For people with heart failure, safe harbor is not necessarily place-bound, but rather it is associated with an increased sense of well-being. Safe harbor is associated with freedom from distressing symptoms. Those with heart failure desired feelings of calm in their physical health, emotional health, and social relationships.

During crisis the need for hospitalization emerged as a greater need than to remain at home. The decision for hospitalization was not an easy one until the time when home management became impossible. The dangers of remaining home then became greater than the perceived dangers of going to the hospital. Although health providers may consider hospitalization as a source of safe harbor, several of the participants did not always associate the hospital with being either calm or safe. Stories of unskilled workers, painful procedures, loss of control, and even near-death experiences were described by some of those who were living with heart failure when in the hospital. Often, they waited until absolutely necessary, until they needed to call “911” and ask for help.

Navigational aides 

Participants in this study identified a variety of navigational aides that helped them manage their heart failure and find safe harbor. The aides are grouped in 2 main categories: human resources and technical resources.

Participants reported a variety of personal resources they used as aides to navigation. These included experience with heart failure, a belief in God, and intuition. The most frequently cited was their personal experiences with heart failure. For example, one woman learned that taking Lasix at night, rather than during the day, readied her to leave her home during the day if she was invited on an outing. She found it much easier to go the bathroom at night than to restrict her activity during the day. In contrast, personal experiences with heart failure actually hindered one participant in calling for emergency help. The participant experienced what she described as the “catch 22.” She did not want to call an ambulance and risk that by the time they would arrive at her home, her symptoms would have resolved.

Another extremely important human resource to those with heart failure was input from significant others. In general, the significant others were family members, however participants also found people whose opinions they valued, perhaps neighbors or friends who cared for them. For example, when experiencing acute illness from heart failure, one man reported that he relied on his wife and daughter to decide when to ask for help:

I'm dumb. I have to wait for my wife to tell me, or my daughter who's a nurse…I mean I'd sit there and die…Till somebody told me, look you're dying…And I just, I guess I'm thankful that I've got other people that kind of keep an eye on me because…in my home we never went to a doctor until we were sick.

Input from others was not always an effective tool for determining position or keeping the person on course. For example, one woman had relied on a daughter for input in deciding how she was doing. Rather than providing accurate information, her daughter reproached her initially, until her symptoms became so severe that she urgently needed to get to the hospital.

Participants deemed communication with providers, particularly with physicians, as vital to their experiences of living with heart failure. Communication with providers included a wide range of contacts, telephone calls to physicians, interaction with hospital employees, and use of “911” services in emergencies. The telephone calls for “911” parallel the traditional navigator's calls of “Mayday.” According to Junger,32 the term mayday “comes from the French venez m'aider-come help me!-and essentially means that those on board have given up all hope. It's up to someone else to save them.”

In traditional navigation, devices such as the radar or sonar increase safety by supplying information. People with heart failure used their own technical resources to help them navigate. These resources include objects or devices that help them to better care for themselves. For example, the bathroom scale was a useful device or instrument for some participants when adjusting dosages of loop diuretic and potassium. Three participants used home oxygen to help with increased levels of activity and with sleep. Several participants reported that anti-anxiety agents supported their ability to operate and decreased the experience of turbulence while living with heart failure.

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Discussion 

Concepts that emerged in this study are not traditionally associated with nursing. However, the metaphor of navigating to safe harbor clearly arose through the interaction of the investigator with data that included interviews, fieldnotes, and resources from nontraditional sources.

Lorig26 defined self-management as “learning and practicing skills necessary to carry on an active and emotionally satisfying life in face of a chronic condition.” The key element of Lorig's model is its focus on the consequences of disease rather than physiology, examination of problem-solving and decision-making skills, and supporting partnership of the chronically ill with health care providers.36 Similar elements emerged in the current model. Experiencing turbulence (physical, emotional, and social) was discovered as a consequence of living with heart failure. Navigating includes issues of self-assessment, planning, and acting that can be examined as a basis of individual problem-solving strategies. The concept of safe harbor recognizes the crucial nature of providers as resources for persons with heart failure.

Sullivan and Hawthorne37 emphasized the importance of self-assessment, through accurate interpretation of meaning and salience of symptoms, as crucial to the efficacy of symptom-management programs. On the basis of their self-assessment, adults with heart failure used the resources at hand to plan or chart the course of their day. The concept of forecasting initially appeared to be consistent with Corbin and Strauss's “trajectory projection.”38 People with chronic illnesses make projections about the future on the basis of their perceptions about the illness course. Although predictive in nature, the participants in this study used forecasting to predict outcomes of specific activities, rather than specifically to predict the illness course.

Not only do other chronic illnesses effect self-assessment, they decrease functioning and overall well-being.20 Choices of activities that would provide improved quality of life were limited by the presence of heart failure. In a healthy group of older adults, Clark39 reported that key strategies such as keeping active, keeping in touch with friends and family, and “doing what they liked to do” improved their quality of life. In the current study, participants' ability to “keep active or “doing what they liked” was significantly affected by heart failure.

People with heart failure directed their activities (both positive and negative) toward the desired feelings of safe and calm. Similarly, in a group of healthy older adults, Clark39 reported that a priority health need was to keep “safe” and “calm.” The healthy adults used self-care behaviors to maintain safe environment, such as watching out for harmful things, using common sense, and avoiding smoke. In the healthy population, keeping physically active was a major source of positive self-care, whereas in the adults with heart failure, only 2 people stressed the importance of exercise in their daily lives. Despite the fact that several other participants had the desire to increase their activity, they were not able to as a result of a variety of prevailing concerns, including threat to personal safety.

A variety of studies have emphasized the effect of strong social support and strong relationships with providers. Supportive family and friends decrease risk for rehospitalization.22 Emotional and tangible support may contribute to increased psychosocial well-being in women with heart failure.12, 40 Successful management of heart failure symptoms was attributed to the presence of strong social system and a close relationship with providers.37 Bass, Fontana, and Bhat41 found that internal and external resources predicted an enhanced quality of life. Kelly-Powell42 reported that adults used a variety of personal resources in choosing medical treatment options when faced with life-threatening health conditions, including their own information and experiences as well as the input of others. Attitudes of health providers were critical to their experiences of making health-related decisions. These findings were supported by this study. Adults with heart failure reported the importance of strong relationships with providers as well as input from a variety of significant others and their own personal experiences. Those people who lacked the high level of resources experienced increasing turbulence.

During periods of increased turbulence or increased symptom severity, the presence of a skilled pilot can promote finding safe harbor. The majority of the participants reported the importance of the input of others to help them make decisions during acute events. These findings are consistent with results of a study on self-management and quality of life in patients with chronic asthma who did not have a desire to be prime decision makers during acute exacerbations of their asthma.43 Although they desired information in managing their care, they preferred the input of a physician during increasing symptom intensity. Adults in this study reported not only the importance of physicians, but of significant others as well in choosing health options, particularly in accessing emergency care.

Nurses could use the metaphor as a teaching tool. Framing self-management in a model rooted in adult experiences and use of a familiar metaphor may be an effective mechanism of enhancing abilities to learn. Additionally, nurses could act as pilots to help those with heart failure develop their navigational skills to manage turbulence in their lives. Nurses could explore markers that adults are already using to assess their health status and create new criteria for initiating communication to providers (eg, improving “ship to shore” communication).

Living with heart failure was associated with a variety of intense feelings and events. Although the interviews provided mere snapshots of the problems and challenges experienced while living with heart failure, these events and feelings were deemed crucial in their telling. As Lorig stated, “People with chronic illness often feel as if they have fallen into a stream.…Once they're there, the medical model can't pull them out. So we teach them how to swim” (Lorig as quoted in Voelker44). Use of the model of navigating to safe harbor for living with heart failure will not teach persons to “swim,” but may provide for creation of interventions to improve their chances of reaching their own safe harbor.

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☆ Reprint requests: Cheryl Hoyt Zambroski PhD, RN, Assistant Professor, University of Louisville, School of Nursing, Louisville, KY 40292.

☆☆ 0147-9563/2003/$30.00 + 0

PII: S0147-9563(02)70210-0

doi:10.1067/mhl.2003.10

Heart & Lung: The Journal of Acute and Critical Care
Volume 32, Issue 1 , Pages 32-40, January 2003

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