Curr Heart Fail Rep DOI 10.1007/s11897-014-0199-3

SELF-CARE AND HEALTH OUTCOMES (T JAARSMA, SECTION EDITOR)

Women with Heart Failure: Do They Require a Special Approach for Improving Adherence to Self-Care? Kelly D. Stamp

# Springer Science+Business Media New York 2014

Abstract The purpose of this review is to evaluate research regarding whether women with heart failure (HF) need a special approach for improving their adherence to self-care. Prior research has sampled mostly white, male populations and these results have been generalized to the population of all HF patients. After age 65, women are at a higher risk than men for developing HF. Once women develop HF they are more likely than men with HF to experience greater symptom burden, re-hospitalizations, social isolation, and higher mortality rates. In this review we will explore barriers and facilitators that women experience when performing self-care, and whether they need individualized interventions or approaches to care that are different from those for male patients with HF. Special approaches such as assessment of social support and self-care counseling when treating women with HF will be discussed, as this may improve women’s adherence, thereby slowing the symptom burden and disease progression. Keywords Heart failure . Women and heart failure . Self-care . Self-care behaviors . Adherence . Chronic illness . Self-management . Self-care maintenance . Self-care confidence . Self-efficacy

Introduction Cardiovascular disease (CVD) is the leading cause of morbidity and mortality in the world. It is projected that approximately 24 million people worldwide will die of CVD by 2030 [1]. CVD comprises of many heart-related conditions such as hypertension, myocardial infarction, and heart failure [2]. K. D. Stamp (*) Boston College, William F. Connell School of Nursing, Cushing Hall 307 140 Commonwealth Avenue, Chestnut Hill, MA 02467, USA e-mail: [email protected]

One type of CVD that is on the rise in women is heart failure (HF). The cost of HF in 2010 was $39.2 billion in the United States of America (USA), including health-care services rendered, medications, and lost productivity [3, 4]. In the United Kingdom (UK), there are approximately 30,000 new women diagnosed with HF per year [5]. Hospitalization costs in the USA due to HF are estimated at $8–15 billion each year, which is twice the amount that the USA spends for all forms of cancer combined [3]. The most common type of HF in women is heart failure with preserved ejection fraction (HFpEF), formally known as diastolic heart failure, as compared to men who typically suffer from heart failure from reduced ejection fraction (HFrEF) [6]. Among individuals with HF, women (67 %) more than men (42 %) suffer from HFpEF [7–9]. Individuals with HFpEF have stiffness and hypertrophy of the left ventricle, which contributes to the inability of the ventricle to adequately relax, expand, and fill with blood. These structural changes lead to a reduced ability of the heart to effectively pump oxygenated blood to meet the body’s demands and increased sensitivity to small central volume changes, compared to patients suffering from HFrEF [10–12]. Due to ventricular noncompliance that is distinctive of HFpEF, women tend to exhibit greater levels of activity intolerance, fatigue, pulmonary edema, jugular vein distention, and S3 gallop than men [4, 9–11, 13]. There is still little appreciation or acknowledgement in the clinical guidelines that women have unique self-care needs that differ from men with HF. We will learn in this review that some of the differences between men and women are the disparities regarding women’s knowledge of their disease process and level of symptom burden, the inability that women may have to recognize signs of worsening HF versus other comorbidities, and the lack of social support for making care decisions compared to men.

Curr Heart Fail Rep

Risk Factors and Outcomes for Women with HF Regardless of type of HF, age is the number-one risk factor for this condition, and since women tend to live longer than men, they have a higher incidence of HF, especially later in life (>65 years of age) [10, 14]. Other common risk factors and comorbidities for HF in women include hypertension, diabetes, atrial fibrillation, and obesity [3, 10, 15•]. Among women with HF, the worst clinical outcomes and highest mortality rates are seen in older women, and those recently hospitalized [10]. Exacerbation of HF is the most common cause of hospital readmission for elderly women in the USA [10, 16]. Recent evidence indicates that HFpEF is associated with high mortality, as exhibited by a 5-year survival rate of 43 % after a first exacerbation episode when compared with the general population [4, 10, 17]. When women are diagnosed with HF they tend to be older (>65 years) and are more likely to have comorbidities such as diabetes, hypertension, and chronic renal failure [10, 18, 19]. The recurrent symptoms of fatigue and shortness of breath leave women with little energy to carry out their daily activities and fulfill their family and perceived role obligations [20].

Why is Performing Self-Care Important for Women? An essential component of treatment for women with HF is their ability to perform self-care to minimize symptoms of deterioration, and when symptoms do occur, to recognize and attribute them to their HF [4, 21, 22•, 23]. Performance of HF self-care has shown to slow the disease progression, and decrease morbidity, mortality, re-hospitalizations, further loss of heart function, and patient suffering [21, 23]. Self-care for HF includes, but is not limited to, obtaining a daily weight, consuming a low-sodium diet, medication adherence, exercising, and developing an awareness of exacerbating symptoms such as shortness of breath, lower extremity edema, fatigue, and activity intolerance [10, 23–25]. Thus far, it is unclear what are the most effective approaches to use when coaching women with HF with regard to performing and adhering to their prescribed self-care. Therefore, the aim of this review is to report current research that has explored facilitators and barriers to women performing HF self-care, and whether women need a special approach from health-care providers to improve their adherence over time.

Barriers and Facilitators to the Performance of Self-Care in Women with HF Barriers From prior studies we do know that women have difficulty maintaining their self-care for a variety of reasons: lack of

knowledge and understanding of the prescribed HF regimen [26•], difficulty interpreting symptoms and attributing them to HF instead of another comorbidity [23, 27], lack of social support, lack of confidence, and depressive symptoms [28, 29] Table 1. Lack of Self-Care Knowledge It has been clearly shown that knowledge alone does not produce behavior change, however, it can serve as one important component of the performance of self-care [23, 30]. Both women and men have exhibited a lack of knowledge regarding how to perform their HF self-care. This lack of knowledge has led to difficulty with maintaining a low-sodium diet, monitoring symptoms, and differentiating the source of their symptoms (i.e., diabetes, asthma, HF) [31•]. Women have reported attributing daily weights to measuring the amount of weight gain from adipose tissue, not fluid overload relative to HF exacerbation. Those with co-occurring HF and diabetes have expressed confusion about eating low-sodium foods versus a diabetic diet [31•]. Other studies have reported a lack of knowledge by women with HF regarding how to follow or maintain a low-sodium diet [32, 33]. Prior literature has reported that women maintain a low-sodium diet more often than men [34]. However, when 33 women were interviewed regarding barriers to consuming a low-sodium diet, they reported low motivation for preparing meals because it was too much trouble to cook for one person; it was easier to prepare a microwave dinner [33]. Most women reported not understanding the correlation between dietary sodium and their HF symptoms, which is similar to the findings of other studies [32, 33]. Confusion has been reported about the difference between using various types of salt such as sea salt and iodized salt, with women thinking that sea salt was healthier and more acceptable than iodized/table salt [33]. Gary [14, 35] examined the frequency of self-care practices in 32 women aged 57-79 years with HFpEF. The majority of Table 1 Barriers and Facilitators to Women with HF Performing SelfCare Barriers

Facilitators

Lack of knowledge

Adapting life based on symptoms Conserving energy

Lack of understanding of prescribed HF regimen Decreased social support Difficulty interpreting symptoms of HF Decreased self-care confidence Depressive symptoms Newly diagnosed HF without experience of exacerbations and treatment

Taking rest periods Presence of social support Positive patient–provider communication High self-care confidence Experience with HF symptoms

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women (91 %) did not exercise for fear that they would injure themselves or increase their symptoms. Only 19 % weighed themselves daily, 33 % reported avoiding sodium in their diet, but did not recognize salt and sodium as the same substance, and only five women monitored medication responses and side effects [14, 35]. Women had the most difficulty with adhering to their diuretic regimen because it interfered with scheduled activities/appointments and they worried about being able to quickly access a bathroom when away from home. When edema occurred, it was not typically recognized as a symptom of HF and was not considered important until dyspnea became a problem. Like the findings from other studies, many women recalled the need to obtain a daily weight, but attributed the increase in weight as adipose tissue, not fluid overload from HF. A major factor that deterred women from performing their self-care was interference with their daily chores and family schedules [14, 35].

Difficulty Interpreting Symptoms with the Presence of Comorbidities Another significant factor that contributes to lower selfcare adherence in women is their amount of comorbidities in addition to the diagnosis of HF. With the presence of multiple comorbidities, it can become difficult for women to recognize their HF symptoms and know when to take action [15•, 27]. Misinterpretation of HF signs and symptoms can lead to poor clinical outcomes by delaying treatment. For example, a study with 37 women and 40 men reported that on average most HF patients experienced dyspnea for a range of 3–90 days before seeking treatment [27]. Women who had dyspnea, fatigue, and edema did not seek care because they attributed the symptoms to anxiety, or as a sign of aging, not as exacerbation of HF. Other reasons for women not seeking help were related to not burdening others, waiting for symptoms to subside, and difficulty with interpretation of symptoms [27]. The inability to interpret the symptoms has caused women to “watch and wait” for a few days before initiating treatment (p. 892) [36]. The presence of multiple comorbidities has been shown to moderate the self-efficacy for performing self-care in 71 men and 43 women with HF [31•]. Multiple co-morbid conditions make it difficult for a woman to differentiate her symptoms as HF from other comorbid conditions. This can lead to an inability to integrate the self-care instructions for each comorbid illness and result in little to no action taken to treat symptoms when they do occur. In addition, women tend to hesitate with titrating their diuretic until they can speak directly to their provider, which is different than men who have reported feeling comfortable adjusting their diuretic dose as needed [36].

Lack of Social Support and Presence of Depressive Symptoms Another significant problem for women with HF is their increased age at the time of diagnosis because they are more likely widowed and socially isolated, and do not have a person close by to help them with recognizing or interpreting symptoms. The culmination of symptoms leave women feeling a sense of sadness, which further leads to interference with the performance of daily activities [36]. Compared to men, women have reported more distress from depressive symptoms, and these depressive symptoms have influenced their experience and recognition of physical symptoms such as fatigue and shortness of breath (SOB) on exertion. The recurrent symptoms leave women with not enough energy to perform their daily activities and participate in social events within their community [37, 38]. With the loss of physical energy to perform their daily activities, women have communicated feelings of being ‘feeble’ and more worn out with unpredictable changes in physical ability [39]. They have reported the need to accept help from others to perform daily tasks/ activities [39]. Due to the symptom burden, women have been left with feelings of guilt for being sick, fear of living with a frail body, anxiety, dependence on others, and loneliness [40]. Depressive symptoms have been shown to negatively impact women’s functional status and ability to perform self-care [37]. Components of functional status are comprised of dyspnea on exertion, fatigue, sleep disturbance, and depressive symptoms. A study of 98 women and 133 men found that dyspnea on exertion, ankle swelling, and fatigue were independently associated with functional status in women, but not in men [37]. Cultural Influences When breaking down the results of gender differences in selfcare across cultures, women in the USA reported lower levels of self-care maintenance (p=0.0028) than men, but their confidence levels (p=0.631) remained comparable to men [36]. More specifically, when sociocultural influences on self-care among a minority black population of 18 men and 12 women were evaluated, it was found that women reported beliefs of HF being inevitable in their culture from stress and/or genetics. The participants reported that they monitored for HF symptoms through ‘body listening’ instead of obtaining daily weights or watching for ankle edema [41•]. Another study evaluating 12 African American women’s understanding of their illness found that these women referred to their condition as having a ‘bad heart’ and believed it to be caused by stress and genetics. They coped with the exacerbations by not worrying about them; they felt that the added stress would worsen their conditions. Many women reported using faith in God to help them cope with their heart condition [42]. At times, cultural beliefs were barriers to maintaining a low-sodium

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diet. For example, women who were raised with a high-salt diet and ate foods such as sausage, ham, bacon, gravy, and biscuits found it more difficult to transition to a low-sodium diet [33]. Another study interviewed six female and five male Pacific Islanders and their caregivers via a focus group to identify barriers to performing self-care. The identified barriers to performing HF self-care by the patients were lack of HF knowledge, mistrust of providers, poor provider-patient relationships, socioeconomic struggles, competing demands on time, and difficulties eating a low-sodium diet [43]. Facilitators Learning to Cope with Symptoms and Making Self-care Decisions Women have successfully coped with their HF symptoms and performed self-care through the development of a new conception of self and by adapting their life based on their symptoms [44]. For example, women reduced the incidence of fatigue by performing small daily tasks instead of completing all of them at one time, and conserved energy by taking plenty of rest periods [44]. Women have reported that prior experiences with HF exacerbations taught them how to recognize the presence of worsening HF, gauge whether the symptoms were dangerous, make decisions regarding symptom treatment, and evaluate the outcomes of the treatment [45, 46]. Similar findings occurred in a secondary analysis that explored the decision-making process used by 18 men and 18 women with HF regarding symptom exacerbation [47•]. The most important components for women performing appropriate self-care were being able to recognize and interpret symptoms as worsening HF, and then assessing the severity of symptoms and their relevant importance [47•]. For instance, once the patient took action to alleviate her symptoms, she contemplated the expected outcome (e.g., decreased dyspnea) and what action should be taken next if the expected outcome did not occur [47•]. Presence of Social Support Another positive facilitator of performing HF self-care is the presence and type of social support [48–50, 51•, 52]. Supportive relationships can originate from spouses, children, other family members, friends, and healthcare providers. Social support has shown to positively influence HF self-care in women [38, 53•]. For example, a cross-sectional study of 42 women and 55 men examined the effects of social support on the self-care confidence of patients with HF and found that perceived social support had a positive influence on HF selfcare confidence (p = .0002) and self-care management (p=.0002) [51•]. A secondary analysis examined the impact

of differing levels of social support on self-care in 115 women and 218 men with HF and found that those with a high level of perceived support consulted their health-care provider regarding weight gain (p=.011), a need for limiting fluid intake (p=.02), taking their medication regimen (p=.017), getting yearly immunizations (p=.001), and performing regular exercise (p

Women with heart failure: do they require a special approach for improving adherence to self-care?

The purpose of this review is to evaluate research regarding whether women with heart failure (HF) need a special approach for improving their adheren...
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