What strategies do patients use to self-care for heart failure (HF)? Although this self-care should be focused around particular types of tasks or domains (including weight monitoring, taking multiple medications, symptom management, physical activity, smoking cessation, and diet restriction), self-care is also recognized to be a complex process. For example, a common approach conceives self-care in HF as “the decisions and strategies undertaken by the individual in order to maintain life, healthy functioning, and well being.”1(p364) In this context, HF self-care can be conceptualized not only as an outcome that can be measured2,3 but also as a complex naturalistic process.4–7 This is corroborated by the recent American Heart Association Scientific Statement which views HF self-care in terms of “naturalistic decision-making” to emphasize that self-care is a process, undertaken in the real-world setting, influenced by individual, contextual, and situational factors.8
Understanding strategies that patients use to engage in self-care recommendations is important because this syndrome causes widespread and avoidable personal suffering and contributes to unsustainably high healthcare costs.9 Heart failure is associated with high mortality, frequent hospitalizations, and an economic strain on the healthcare system.9 Heart failure is extremely common as it affects a large and growing proportion of the ageing population in high-income countries.10 In the United States, approximately 5.7 million people have HF, with more than 500 000 newly diagnosed cases each year.10 Furthermore, HF also places a heavy financial burden on the healthcare system and is one of the most costly chronic conditions in developed countries.9 It is estimated that the cost of HF consumes between 1.1% and 1.9% of total healthcare spending in developed countries, with 50% to 74% of the HF costs attributed to hospitalization or long-term institutional care.9 Strategies to improve clinical outcomes and decrease the burden of HF are clearly needed.
Consensus guidelines for the treatment of patients with HF from North America and Europe state that self-care is a key component of daily HF management.11–13 However, despite this importance, most patients have difficulties with engaging in the necessary activities recommended in the clinical guidelines. Current evidence has identified various personal, psychosocial, and contextual factors that influence self-care8,14–19; however, the strategies that patients and caregivers use to enact self-care recommendations are less understood. Insight that goes beyond the known facilitators and barriers to self-care and extends to understanding the strategies that patients develop to engage in self-care is required to help healthcare providers (HCPs) better understand the self-care needs of HF patients. Generation of such knowledge is best suited for a qualitative research design20 because qualitative research methods examine the complexities of self-care processes and behaviors as they occur in natural settings from the perspectives of those engaged in care and can then capture the “insider” perspectives of those most closely involved.21 This important, yet currently untapped, body of knowledge is critical to improving understanding about the nature and complexity of HF self-care needs and to developing more effective support, health services, and interventions that are responsive to the needs of patients. The purpose of this study was to conduct a meta-synthesis of qualitative research literature exploring self-care needs in HF to highlight the strategies that patients use to accommodate self-care recommendations into the reality of their daily lives.
This review is an analysis of qualitative research studies that were focused on the complex factors and processes that influence self-care. Qualitative meta-synthesis has been used to understand various aspects of health around disease management22,24 and, importantly, is not dependent on using studies that self-identify (eg, via titles and abstracts) as being related only to “self-care.” This is vital when reviewing qualitative research of HF because studies are often framed in general terms (eg, “patient experiences”) but may contain themes and data relating to self-care.
To be included in this review, studies had to report primary qualitative data wholly or as part of mixed-methods designs, contain population-specific data or themes from adults older than 18 years, reasonably seen to pertain to self-care, be published in the English language, and be published as full papers/theses during or after 1995. The search strategy combined general and specific terms relating to HF and qualitative design and was used to search the following databases until March 19, 2012: Ovid MEDLINE, Ovid EMBASE, Ovid PsycINFO, CSA Sociological Abstracts, Ovid AARP Ageline, EBSCO Academic Search Complete, EBSCO CINAHL, EBSCO SocINDEX, ISI Web of Science, and Scopus. A comprehensive range of terms and synonyms associated with HF were used along with a filter designed to identify the full range of qualitative methods (See Table Supplemental Digital Content 1, http://links.lww.com/JCN/A6). We also searched Proquest Dissertations and Theses database, scanned the reference lists of recent papers, and consulted with colleagues.
All papers identified by the systematic search were screened for relevancy first by their titles/abstract. Papers that seemed to be potentially relevant were then full-text screened against the inclusion criteria (Figure).
The meta-synthesis approach of Noblit and Hare25 was used to synthesize data from relevant studies. This interpretive approach to synthesis involved first extracting verbatim data or themes related to self-care from studies into a paper-based matrix. Before commencing the review, self-care was defined as the decisions and strategies undertaken by the individual to maintain life, healthy functioning, and well-being.1(p364) To support consistent interpretation among the team, data or themes were interpreted to be relevant if “findings related to any process, phenomena, or construct that pertains to the self-care of HF in patients or support of self-care by lay caregivers as described by HF patients.” The coding of themes was paper based: 4 reviewers (A.M.C., K.H., P.H.S., and K.C.) examined the relationships between concepts identified in the findings from the matrix. Second-order interpretations of common or reoccurring concepts were derived, noted comprehensively, and interpreted in the context of study quality and setting. The main concepts identified during the second stage were then used to reinterpret each paper and reconsider the relationships between the papers. The results of this synthesis are the findings of the review.
The quality of all included studies was assessed using the criteria from the Critical Appraisal Skills Programme Qualitative Appraisal Tool25 (See Table, Supplemental Digital Content 2, http://links.lww.com/JCN/A7). Studies were ranked low, moderate, or high quality based on key methodological questions from the Critical Appraisal Skills Programme tool but were not excluded on the basis of low quality. Both screening and quality appraisal involved independent assessment by two reviewers and any disagreements were resolved by discussion among the research team.
Of 1421 papers identified (Figure), 47 met the criteria for inclusion in the review of patients’ self-care strategies (Table). Main reasons for exclusion were that papers did not contain data on HF self-care or did not have a qualitative methodology. Studies involved 1377 patients (45% women; mean age, 67 years; age range, 25–98 years), 145 caregivers, and 15 HCPs. With some exceptions, populations were predominantly white and urban dwelling. Most studies were conducted in the United States (n = 25), and overall, study quality was moderate (n = 30), with common study weaknesses being superficial analyses of themes, overreliance on convenience sampling, and insufficient description of sample characteristics (Table).
Patients used various strategies to accommodate self-care recommendations and HF into the reality of their daily lives. In general, engaging in self-care required both perception-based and action-based strategies and was often described by patients in the context of adapting to stressors associated with living with a chronic condition. Furthermore, strategies were complex, intentional, and planned, and represented coherent approaches undertaken by patients that harnessed previous experiences and were a means to manage living with HF.
Perception-Based Self-care Strategies
Living with HF is viewed as a life-changing event because it imposes significant stressors for patients on both their physical capabilities and sense of self.28,41,50,57,65 Patients often go through a phase of acceptance and adjustment as they have to modify their expectations about life, adjust their lifestyles to HF, and place HF in some context.65 In response to stressors experienced by HF patients, coping mechanisms and resources are mobilized and can subsequently influence patient self-care strategies.73 Coping mechanisms found to facilitate or interfere with engagement in self-care fell into two main strategic approaches: a perception-based strategy or action-based strategy.
A perception-based strategy can be described as a cognitive, emotional, or psychosocial response to help adjust or cope with living with the chronic condition, leading to a gradual redefinition of the self and enabling a person to get on with life.30,52,65 Many patients with HF accepted that it was possible to maintain a good quality of life, although this often required a reevaluation of what they truly valued.27,29,36,59,69 This type of strategy may be embedded in perceptions that reflect cultural beliefs, social norms, or spirituality.33,36,52,59,66,74 Emerging evidence suggests that perception-based strategies may support self-care adherence. For example, one person described the realization that he needed to “take his HF serious” and accept this diagnosis.61 He continued to miss family events that were important to him because of worsening HF. This loss brought him to consider his personal value of family involvement and acceptance of his HF; this supported subsequent self-care behaviors.61 Another person shared his strategy for engaging in self-care in terms of the self-help principles in the context of “going to AA; the Twelve Steps. You have to accept, I have a problem I have to do something about, and start doing it.”41(p162)
Some patients reported perception-based strategies that seemed as a rejection of self-care, such as denying35,59 or ignoring symptoms53 and smoking or binge eating.43,46,72 For example, one person described an emotional reaction and its impact on adherence to dietary restrictions,
Considering how I used to be and now…that has changed drastically…. I find it very hard sometimes to deal with…it’s very emotional. This morning after I got into the office for a while I just, uh, cried for a little bit, a sense of hopelessness…I’m not capable of doing the walking that I used to do…I feel a sense of inadequacy…; Sometimes you just get fed up and I think that was just a day that I had a real down spiraling. I just ate what I wanted. I put salt on everything and just didn’t care.54(p239)
Emotional reactions such as anxiety and depression can have a negative impact on engaging in self-care.48,54,75,76 Nevertheless, emotional reactions such as fear or anxiety, which tend to be viewed as maladaptive coping strategies, may also have a positive influence on self-care. For example, patients report increases in vigilance of symptom monitoring and adherence to following advice from the healthcare team in response to feelings of anxiety,56 fear of dying,35 or fear of hospitalization.49,64,77 It was not clear in the reviewed studies if patients were aware that such behaviors were congruent with self-care recommendations and/or engaged in these behaviors intermittently or continuously.
Action-Based Self-care Strategies
An action-based self-care strategy represents as an adjustment of daily tasks or lifestyle to maintain independence and quality of life.31,32,41,60,68 For example, some patients addressed feelings of uncertainty by learning how to monitor and respond to their symptoms and developing a relationship with their primary HCPs.69 Others would develop action-based strategies that integrated HF management into their everyday life routines to improve self-care.54,61,67 Many patients describe action-based strategies such as learning how to “pace” their activities or “listen to their bodies” to help optimize their ability to maintain physical activity.27,31,32,34,35,53,65,72,78 Over time, patients viewed such action-based strategies as a normal part of their daily routine.51,52,60 One patient describes deliberate actions to continue employment while living with HF:
I pack my lunch and I usually exercise at lunch by walking 3 miles. My coworkers walk with me…. Sometimes I do delay my Lasix® pill, but only by 2 hours if I have a morning conference meeting…. Managing my heart failure is extremely important, extremely important…. I want to be able to function as normally as possible and I want to be able to continue to work.31(p71)
However, it was not clear if these self-care action strategies were maintained over time given fluctuations in daily life or internal resources (eg, self-care was seen as tiring). One study reported that patients did get tired of weighing themselves daily and stopped this activity, even though they knew they should not.62 Other studies reported that alterations to established life routines could reduce adherence to medication regimens.37,38,60
We have a team meeting every two weeks, and I have to be there. Bright and early, and I normally don’t get up that early, and often I forget to take it, Even though I’ve got it on the counter there.38(p81)
Action-based strategies also included enlisting the help of caregivers for assistance with self-care activities. Caregiver assistance ranged from simple reminding to taking over some of the responsibilities such as organizing medications, buying groceries and preparing meals according to dietary guidelines, monitoring symptoms, and navigating the healthcare system as needed.27,40,42,43,45,51–53,55,56,59,63,74,75,79 Although some patients felt they did not want to be a burden to caregivers, at the same time they recognized their inability to manage self-care activities without caregiver help.36
One patient explained:
I was a little bit afraid of everything but then my kids and the husband was so helpful so…educate your own family about [heart failure]…cause they know what’s going on and help me with the food, with the exercise…I think it’s better.45(p286)
Self-care Strategies; Observable or Hidden Work
In general, engaging in self-care requires both perception-based and action-based strategies and was often described by patients in the context of adapting to stressors associated with living with a chronic condition. However, planning and working through such strategies by HF patients may or may not be evident to those around them. Patients reported a wide variety of creative, well-planned, and deliberate self-care action strategies that could be observed by others.31,32,53 Daily activities were modified to control symptoms, including bathing,68 grocery shopping,35 cleaning the house,27 meal preparation,27,45,52,67 and participating in leisure activities.66 A patient described her strategy to overcome her poor stamina as she found an efficient way to accomplish important tasks so she was not wasting energy:
I do most of the cooking. We live in this house and we have got this nice roomy kitchen and I’ve got a clerical chair and I just whip around the kitchen in this clerical chair. It is what I need to do. It works.27(p78)
Conversely, cognitive tasks associated with self-care were often unobservable by others. These include deciphering symptoms and deciding on and evaluating a course of action in response to symptoms.45,47,72 The following is an example of the thought process of an HF patient who is trying to interpret symptoms of shortness of breath:
I think it is really asthma, but it acts somewhat (pointing to heart)…But that’s not my trouble. Cause my heart never acted like this when I had the asthma. It wasn’t this feeling you can’t catch your breath…it’s short, the shortness…I could always do something for my asthma. This don’t clear up. It clears up some…when I had asthma I could get up and dress and go to church…I had the asthma attack, but they would kind of go away. But this doesn’t. I’m relieved some, but it’s never like with asthma…No it’s not like asthma all together, but it’s something like a bad asthma attack.47(p168)
Self-care Strategies Are Often Based on Past Experiences
Self-care strategies improved over time with HF patients learning and building from previous experiences to guide their ongoing self-care strategies and decisions. Some self-care routines were embedded in action-based strategies that were practiced over time. For example, patients would use memory aids or refine daily routines to determine the best way to help with remembering complex medication schedules.26,63,70,71,75
I have a basket of prescriptions and I set the basket down, and I start with one and go around it and take them…used this method for years, and it just seems to work and that’s why I continue it.75(p8)
Self-care decisions could also reflect emotional reactions to previous HF experiences. This patient described the reason for occasionally missing his diuretic dose:
I don’t take my Lasix when I am going out somewhere, I can’t always get to a bathroom quick enough…. I had an accident when I was out a few months ago and I was so embarrassed I could have died.”37(pp14–15)
Some patients avoided taking action by seeking help from HCPs for signs of worsening symptoms for fear of rehospitalization and often delayed calling until they needed emergency assistance.43,44,74 On the other hand, other patients sought early advice for worsening symptoms to avoid the fear they described with acute decompensation.43 Finally, some patients reported a balancing act of attitudes where they pondered between both positive and negative self-care choices that were based on lessons learned from previous experiences.32,67 The following is an example from Hoyt:
Dorothy had 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. She was afraid, based on past experiences, that she would call too soon, and so tended to wait until a crisis to ask for help. Reflecting on an acute emergency requiring “911”, or what Dorothy described as getting in “big trouble”, allowed her to recognize her own cues and decrease risk of recurrence.43(pp108–112)
During the process of learning, some patients often used a variety of strategies to manage and determine the effects of their medications, such as home-based lay clinical trials.38,47 This often involved meticulous note-taking, analysis, and “juggling” of both medications and daily activities and contributed to informal knowledge as patients made connections between medications and symptoms they experienced.38,47,58 However, not all patients felt comfortable sharing this information with their healthcare team members because they may not feel the HCPs would agree with their judgments. The following is an example from Glassman:
One patient described her strategy to improve her tolerance to a medication based on a past experience of symptomatic hypotension that prevented her from going to work. She stopped the medication for a few days, reintroduced the medication at ½ the prescribed dose and then slowly titrated the medication depending on how she felt getting out of bed in the morning. At the same time, she did not report this to her physician and actually “lied to him about the dose” she was taking, as she was too embarrassed to disclose her own approach to titrating the medication.38(p109)
Patients with HF expressed difficulty with translating self-care knowledge into understanding how to engage in these activities and behaviors.39,46,62,80 These patient “lay clinical trials” may have reflected an expert approach to managing their HF for some HF patients, whereas others may have blindly experimented with self-care tasks as an attempt to try and understand “how” to self-care.76 For example, some patients thought that increasing fluid intake when they were “getting sick” or when they had eaten something salty would help “flush out” the system and improve symptoms, but in fact, this action could make their symptoms worse.20(p181) In another study, women who were trying to lose weight by eating low-calorie meals as a positive healthy choice were unaware of the high sodium content in these food choices and could make their HF symptoms worse.37
I thought I was doing the right thing trying to lose weight, had no idea I was making my heart problem worse.37(p13)
This meta-synthesis shows that most patients with HF do want to engage in self-care and go to great lengths to find ways to practice self-care behaviors. It is apparent that they may also have difficulty executing these self-care behaviors on their own and require effective guidance and support from HCPs or and/or caregivers. Three key messages arise from these findings and are discussed below.
Patients Engage in Perception and Action-Based Strategies
The effect of HF on an individual’s life can be profound,81 and patients often mobilize resources to overcome these life-changing experiences in an effort to achieve control, maintain independence, and improve their quality of life. In this context, patients define self-care not only by the actual performance of tasks but also by the emotional reactions and strategies necessary for learning how to adapt to living with HF. Results from our meta-synthesis suggest that ‘self-care need,’ as defined by HF patients, represents a broader view of “caring for oneself to help adapt to living with HF” and extends to include coping strategies beyond the empirical action-based definition of self-care. Although the empirical literature does appreciate the potential impact of emotions and coping on self-care,7 findings from our meta-synthesis highlight the comprehensive approach that HCPs need to assume when helping patients improve their quality of life through self-care strategies. For example, patients may defer seeking healthcare for fear of hospitalization, even though they recognize the early symptoms of decompensation. Without exploring the fear underlying the decision, education outlining the tasks for symptom monitoring and management that includes contact with HCPs may not be adopted by such patients. Furthermore, HCPs may need to take a step back and explore the emotional reactions that HF patients experience before proceeding with interventions specifically targeting self-care activities. Helping patients come to terms with and accepting HF can then facilitate uptake of self-care strategies.
Learning Self-care Is a Process in Which Cumulative Experience is Paramount
Most patients do want to learn how to engage in self-care in an effort to decrease uncertainty, regain a sense of control, and improve their quality of life; however, they are unsure as how best to accomplish these goals.80 While developing these action strategies to help self-manage their HF, their ideas and knowledge from previous experiences may not always be helpful, and in fact, may make their symptoms worse. At the same time, patients may be reluctant or embarrassed to share their action strategies with their healthcare team members. Therefore, HCPs need to encourage and promote discussions, and coach patients to initiate self-care strategies with an agenda that builds trust and encourages learning. Rather than focusing on the possible problems that arose from their self-care decisions, HCPs need to harness these situations as opportunities for learning and growth and highlight the positive learning that comes from such attempts. Arguably, more can be learned from situations in which HF self-care was not successfully undertaken. For example, consultations and/or hospitalization provide a useful opportunity to assess what seems to work or not work within patients’ actual self-care practice. As adults, experiential learning is often more effective than abstract thinking,82 and understanding the patients’ experiences with HF self-care builds an excellent foundation for individualizing learning opportunities. Home-based lay clinical trials need to be regarded as attempts to overcome difficulty with the current HF self-care regimen rather than as overt noncompliance. Exploring the actions and perceptions of such self-care clinical trials with HF patients creates an opportunity for adapting self-care activities to patients’ current situations and helps patients learn more about the why and how of their HF self-care. Furthermore, focusing on the positive learning rather than maladaptive decision making within a clinical trial will contribute to building patient self-confidence and efficacy, which is necessary for self-care.15,83
Strategies to Optimize Self-care Must Be Adapted to the Daily Routine and Environment
As we continue to develop group and individual interventions for promoting self-care in HF patients, it is critical that individualized instruction include helping patients understand the how and why of self-care within their personal life situation. Healthcare practitioners need to provide a safe environment for patients to explore real or potential situations when integrating self-care into their daily life will be difficult. Creative problem solving, behavioral strategies, and mutual goal setting are necessary to help patients overcome challenges for integrating self-care into their daily routine and sustaining such action strategies over time.80,84,85
Strategies to optimize self-care also extend to individualizing patients’ symptom experience and management. For example, if individuals know that “when their ring gets tight” they need an extra diuretic, teaching them to check for pedal edema is not helpful if they do not experience pedal edema with an HF exacerbation. Often, the early symptoms of HF are subtle and may be difficult for a person to identify, and therefore, HCPs need to be “detectives” and help patients decipher their unique and early symptoms of HF exacerbation from other symptoms they may have attributed to HF. Sometimes, the process of raising awareness through reflection is an unfamiliar skill for patients,86 and they may need some guidance with identifying the physical symptoms, environmental features, and emotional feelings of their situation. Through reflective listening techniques,87 HCPs can raise patient awareness of the objective and subjective features that predominated in the patient’s experience of HF symptoms and management strategies. Once these individual patterns of symptom deterioration are identified, HCPs can devise individualized algorithms or similar decision aids with patients, and caregivers when available, to help them navigate key stages in decision-making processes around self-care of HF, especially in relation to timely help-seeking from the appropriate sources. Importantly, these approaches prioritize the patients’ experiences and strategies as opposed to reiterating self-care tasks and recommendations. As such, discussions around self-care and management of HF are more likely to elicit and be congruent with patients’ personal values.
As with all reviews, the findings of this meta-synthesis are constrained by the scope and quality of the included studies. Although a number of studies in this review are based on naturalistic decision-making theory, many studies lacked a theoretical approach to understanding these multifactorial and complex behaviors. This is an important weakness because health behaviors, including those associated with HF self-care, can be conceptualized in a variety of ways depending on underlying assumptions about the nature and determinants of this behavior. If HF self-care is viewed in more complex terms as being both an outcome and a naturalistic process, that is then a process influenced by personal and contextual factors. Theoretical and methodological approaches to understanding this conceptualization of self-care are needed which can encompass and unpack this complexity.
In summary, patient engagement in self-care is at the foundation for living with a chronic condition such as HF. Healthcare providers need to appreciate that patients regard self-care as an adaptation to living with a chronic condition that they undertake to maintain independence and quality of life. Healthcare providers need to recognize that self-care requires a process of learning from experience, and embrace an individualized approach for helping HF patients develop the necessary self-care skills while emphasizing the how and not just the what. We also need to provide a safe and nonjudgmental environment for patients to discuss their attempts when learning how to self-care while highlighting the value of learning from all their experiences. Finally, the supportive role of caregivers as a necessary strategy for patient self-care support cannot be understated. The additional insight into the nature and complexity of HF self-care needs gained from this meta-synthesis of literature exploring the strategies that patients use to engage in self-care should help clinicians develop more effective support to patients and caregivers as they strive to improve clinical outcomes in this high risk population.
What’s New and Important
- Patients define self-care not only by the actual performance of tasks but also by the emotional reactions and strategies necessary for learning how to adapt to living with HF.
- Self-care is a process of learning, and self-care activities are often intentional, planned, and built on previous experiences.
- Individualized approaches that emphasize how to self-care must be adopted for patients to develop the necessary HF self-care skills.
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