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Caregiver Contribution to Self-care in Patients With Heart Failure

A Qualitative Descriptive Study

Durante, Angela, MSN, RN; Paturzo, Marco, PhD, RN; Mottola, Antonella, PhD, RN; Alvaro, Rosaria, MSN, RN, FESC; Vaughan Dickson, Victoria, PhD, CRNP, FAHA, FAAN; Vellone, Ercole, PhD, RN, FESC

Journal of Cardiovascular Nursing: March/April 2019 - Volume 34 - Issue 2 - p E28–E35
doi: 10.1097/JCN.0000000000000560
Feature Article/Online Only
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SDC

Background Caregiver contribution to heart failure (HF) self-care maintenance and management is important in HF care. Literature remains unclear regarding which practices caregivers perform to contribute to self-care for patients with HF, especially in Southern Europe.

Objective: The objective of this study was to describe caregiver contributions to HF self-care maintenance (ie, treatment adherence and symptom monitoring) and management (ie, managing HF symptoms when they occur).

Methods Forty HF caregivers were enrolled from 3 outpatient clinics in Italy for a qualitative descriptive study. Data were collected with a semistructured interview and analyzed using content analysis.

Results Caregivers were 53.6 years old on average and mostly female (63.5%). Caregiver contributions to self-care maintenance included practices related to (1) monitoring medication adherence, (2) educating patients about HF symptom monitoring, (3) motivating patients to perform physical activity, and (4) reinforcing dietary restrictions. However, some of these practices were incorrect (eg, weighing the patient only once a week). Caregiver contributions to self-care management included practices related to (1) symptom recognition and (2) treatment implementation. Caregivers were able to recognize symptoms of HF exacerbation (eg, breathlessness) but lacked confidence regarding treatment implementation (eg, administering an extra diuretic).

Conclusions Although caregivers described contributing to patients' HF self-care maintenance and management, some of their practices were incorrect. Because the caregiver contributions to HF self-care can improve patient outcomes, clinicians should routinely assess caregiver HF self-care practices and provide education and reinforcement regarding evidence-based practices.

Angela Durante, MSN, RN PhD Student, Department of Biomedicine and Prevention University of Rome Tor Vergata, Italy.

Marco Paturzo, PhD, RN Department of Biomedicine and Prevention, University of Rome Tor Vergata, Italy; Military Nurse (current), CELIO Military Hospital of Rome, Italy.

Antonella Mottola, PhD, RN Department of Biomedicine and Prevention, University of Rome Tor Vergata, Italy; Nurse Manager (current), San Pio Hospital, Benevento, Italy.

Rosaria Alvaro, MSN, RN, FESC Professor, Department of Biomedicine and Prevention University of Rome Tor Vergata, Italy.

Victoria Vaughan Dickson, PhD, CRNP, FAHA, FAAN Associate Professor, New York University Rory Meyers College of Nursing.

Ercole Vellone, PhD, RN, FESC Assistant Professor, Department of Biomedicine and Prevention University of Rome Tor Vergata, Italy.

The authors have no conflicts of interest to disclose.

The Centre of Excellence for Nursing Scholarship, Rome, Italy, funded this study.

Correspondence Angela Durante RN, MSN, Department of Biomedicine and Prevention University of Rome Tor Vergata, Via Montpellier, 1-00133 Rome, Italy (angela.durante@uniroma2.eu).

Supplemental digital content is available for this article. Direct URL citations appear in the printed text and are provided in the HTML and PDF versions of this article on the journal’s Web site (www.jcnjournal.com).

Heart failure (HF) is a chronic syndrome that has an important impact on the world population. In Europe and the United States, HF affects approximately 15 million and 6.5 million people, respectively,1,2 with an increasing prevalence due to the aging of the population. Heart failure has an important impact on patients' quality of life because of recurrent hospitalizations and the burden caused by its symptoms (eg, fatigue).3,4

To cope with the burden caused by this disease, self-care performed by patients with HF is a cornerstone of treatment. Riegel and Dickson5 defined HF self-care as those activities that patients perform to maintain the physiological stability of the disease (self-care maintenance) and to respond to the symptoms of HF exacerbation when they occur (self-care management). Self-care maintenance and management are both influenced by self-care confidence, that is, task-specific self-efficacy during the self-care process. Several studies have shown that when patients perform adequate self-care, they report better quality of life, live longer, and experience fewer hospitalizations.6–8 Although self-care is essential to HF care, patients struggle to perform self-care9,10 and often rely on caregivers.

Caregivers are those people inside or outside the family who provide most of the informal care to patients with HF and are important in the self-care process.11 Recent studies have shown that self-care is suboptimal in patients with HF12,13 and that, consequently, the caregiver's contribution (CC) to self-care is important in helping patients to perform HF self-care. The CC to patients' HF self-care has been defined as “the provision of time, effort, and support on the behalf of another person who needs to perform HF self-care14(p246)

There is emerging research describing the importance of the CC to HF self-care. This research has also been synthesized in 2 recent systematic reviews.11,15 The first review11 synthesized the practices used by caregivers to help patients with HF perform self-care. These practices consisted of improving patient lifestyle (eg, exercise), improving medication and diet adherence, monitoring and recognizing patients' symptoms (eg, fatigue), and calling a physician if HF worsens. However, this review concluded that there is still a gap in knowledge about the CC to HF self-care, especially in dealing with HF signs and symptoms (self-care management). The second systematic review15 appraised the state of science regarding HF family caregiving and underscored the lack of studies conducted on the CC to HF self-care in Southern Europe. Because the CC to HF self-care is influenced by culture,16,17 studying caregiver practices in this world region is essential. In Southern Europe, particularly Italy, which is strongly influenced by Catholicism, caregivers have a strong sense of family duty, which influences their contributions to patients' self-care.18 However, few studies have been conducted in this world region regarding the practices involved in the CC to HF self-care.14,19 Because the prevalence of HF continues to increase, outcomes remain poor in Southern Europe,10,20 and caregivers play a key role in contributing to HF self-care19 and improving patient outcomes,21 it is important to have a better understanding of caregiver contributions to HF self-care. Moreover, it is fundamental to know it, to inform the development and implementation of pragmatic interventions, which are still in an early stage in Southern Europe. Therefore, the aim of this study was to describe CC to HF self-care maintenance (ie, symptom monitoring and treatment adherence) and management (ie, dealing with HF symptoms) in Southern Europe.

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Methods

A qualitative, descriptive study design was used. The situation-specific theory of HF self-care was used as an organizing framework for the identification and analysis of caregiver practices in this study.5 A convenience sample of 40 caregivers was enrolled from outpatient cardiovascular clinics in 3 hospitals located in the south of Italy. The following inclusion criteria were adopted to enroll caregivers in the study: (1) being an informal caregiver (ie, unpaid) for a patient who had been diagnosed with HF for at least 3 months before data collection (a clinical diagnosis of HF was based on the guidelines of the European Society of Cardiology),22 (2) being 18 years or older, and (3) being willing to sign the informed consent form. Caregivers were excluded if they cared for a patient with a score of lower than 4 on the 6-item screener, indicating severe cognitive impairment.23

This study was approved by the institutional review boards of each hospital in which the caregivers and patients were enrolled. Caregivers were approached by a researcher (a PhD student) during patients' routine follow-up visits to cardiovascular clinics. After both caregivers and patients had been fully informed of the study aims and signed the informed consent form, the caregivers' sociodemographic data were collected using a brief investigator-developed questionnaire. Clinical characteristics of the patients were obtained from their medical records. A trained researcher in qualitative research methods then conducted the face-to-face interviews with the caregivers, either at the caregiver's or the patient's home.

A semistructured interview guide informed by the Situation-Specific Theory of HF Self-care24 was used to elicit in-depth descriptions of how caregivers contributed to the self-care of the patients (Table 1). This interview guide was preliminarily tested with 2 HF caregivers who were not included in this study. The initial questions were open-ended (eg, “Please tell me about the HF of the person you care for”), with follow-up probes (eg, “Please think about a typical day. What do you usually do to take care of your patient with HF?”). All audio-recorded interviews with the caregivers were conducted in the Italian language by the trained researcher. Interviews were performed without the patient's presence to allow the caregiver to speak freely. The interviews lasted an average of 60 minutes (range, 30–90 minutes). All interviews were transcribed verbatim, generating 184 pages. Then, the transcripts were read and reread several times by 2 investigators of the research team to ensure consistency between the text and the audio recordings.

TABLE 1

TABLE 1

The interviews were analyzed using qualitative content analysis.25 An inductive approach was used to identify key themes in the area of interest by reducing the material to a set of codes and categories.26 A coding frame was developed a priori based on the guiding theoretical framework, and the transcripts were coded by the principal investigator. As new codes emerged, the coding frame was updated and the transcripts were reread. Codes derived from the qualitative data were summarized into coding categories within cases and then across cases to yield a rich descriptive analysis. Finally, patterns of codes and categories yielded themes, which were explored across 2 domains: the CC to self-care maintenance and the CC to self-care management. Data saturation was obtained after interviewing 40 caregivers for patients with HF.

Atlas.ti Version 7 was used for the analysis of the qualitative data. The sociodemographic data were analyzed using SPSS v 22 and used to describe the sample. The Guba and Lincoln criteria were used to ensure the trustworthiness of the findings.27 To ensure dependability, a researcher who was an expert in HF self-care but was not involved in the research process assessed the adequacy of the data and the preliminary results obtained and thus ensured the accuracy of the findings. To ensure confirmability, an audit trail was documented during the team analysis sessions. Any discrepancies in coding were reviewed by the research team and discussed among the coders and investigators until a consensus was met. To ensure credibility, the final categorizations and subsequent content justifications were agreed upon by all members of the research team.

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Results

The mean (SD) age of the sample was 53.6 (15.66) years (range, 38–84 years). Most participants were female (n = 33), married (n = 32), and living with the patient (n = 30). Patients were mostly in New York Heart Association class II (n = 26) and had several comorbidities (atrial fibrillation, n = 16; chronic obstructive pulmonary disease, n = 8; diabetes, n = 2; reported in Tables 2 and 3). The Consolidated Criteria for Reporting Qualitative Studies28 were used to report the qualitative findings of this study.

TABLE 2

TABLE 2

TABLE 3

TABLE 3

The overarching theme that emerged from the qualitative analysis was that HF caregivers contributed to self-care maintenance and management using strategies that they learned from others (eg, neighbors, family, and friends) or their own experiences, along with the support of trusted resources (eg, family and friends). The most common contributions were monitoring medications, educating the patients about HF symptoms, motivating patients to exercise, and reinforcing dietary restrictions. A secondary theme was that caregivers lacked confidence in symptom management, which often led to delayed symptom response and increased the use of emergency departments. Supplemental Digital Content 1, http://links.lww.com/JCN/A72, reports the coding tree of the study.

It was evident in the interviews the most common CCs to self-care maintenance were related to (1) monitoring medication adherence, (2) educating patients about HF symptom monitoring, (3) motivating patients to engage in physical activity, and (4) reinforcing dietary restrictions. Ninety percent of respondents (n = 33) indicated that they monitored medication adherence by using strategies that worked according to their experiences and were also acceptable to their patients with HF (eg, medication sheets and pill boxes). One daughter explained her role in medication monitoring as follows: “My mother takes a lot of medications, such as diuretics, antihypertensives, and beta-blockers, and to monitor everything, I bought a pill box, where I put all the drugs organized by time and type. Before coming back home from work, I go to mom's house and see if everything is ok.” For some caregivers, monitoring medication took place remotely, often through daily telephone call reminders, as one caregiver son reported: “Twice a day, I call my dad to check if he took all his medications.” In some cases, caregivers were particularly active in monitoring their patients' medication regimens, as one daughter reported: “I check what she [the patient] does, step by step, day by day, medication by medication. She wants to do it by herself, but I prefer to keep an eye on her.”

Caregivers' symptom monitoring was focused on education, as described in 28 caregiver interviews. Specifically, caregivers described their role in educating patients about the monitoring of HF signs and symptoms. For example, caregivers described educating patients to measure their ankle circumference with a measuring tape and check their weight with a scale. Interestingly, caregivers reported that they provided education about monitoring signs and symptoms based on their own experiences and knowledge about HF or after consulting with laypeople, such as friends or neighbors. However, in some cases, when caregivers relied on their own experience or consulted with laypeople, the result was incorrect practices, for example, weighing the patient weekly instead of daily.

Practices related to monitoring signs and symptoms were neither taught nor suggested by healthcare providers (nurses or physicians). As a result, many caregivers described a lack of confidence in these practices because they were unsure whether these practices were adequate or not. For example, one caregiver daughter reported, “I do not know if it's right or wrong what I recommend to my mom, such as monitoring her ankles when they swell. I do that because my neighbor also does this because his dad has heart failure too.” Another caregiver wife reported, “Nobody [nurses or family doctors] gave suggestions to us, so I had to develop strategies that helped me to keep my husband's situation under control, but I don't know if what I do is correct.”

Motivating patients to engage in physical activity was another way in which caregivers contributed to self-care maintenance. Most participants (n = 30) described how they motivated their patients while taking their disease severity into account. Strategies successfully developed by these caregivers included walking regularly with the patient or making a specific appointment with the patient to perform physical activity. A daughter caregiver reported, “I did not know how to motivate my father, but then, I thought to walk with him routinely once a week to the park (…) It has been a good idea!” However, when a patient's condition was not good, the caregiver took illness severity into account: “…when I see that he doesn't feel well, I don't insist.” Encouraging the use of a treadmill to exercise was only reported by a few caregivers (n = 15), mostly those caring for younger patients and those with limited HF symptoms: “Because he never gets out of the house [due to his attitude], I bought a treadmill to let him move a bit.”

The CC regarding dietary restrictions was provided in the form of tangible and practical support. In 33 interviews, caregivers reported that they prepared meals or made food choices for their patients to avoid excess sodium intake. For example, one wife caregiver reported, “I cook everything without salt and reduce the amount of fluid in his diet. I know how salt and fluid can be dangerous for his health.” In 14 interviews, caregivers reported that they reinforced dietary restriction by using a 1-g single-dose dispenser and recording the amount of sodium used in 1 week: “I think that using single doses of 1 gram of salt allows us to know how much salt is consumed during a week. In this way, I can figure out whether to increase or decrease [salt in the diet].”

Regarding the CC to self-care management, analysis showed that most participants (n = 38) recognized HF signs and symptoms and were aware of their importance (n = 34) but did not always take effective action to relieve them or respond in a timely manner. It was evident in our analysis that practices related to the CC to self-care management were influenced by a lack of confidence in dealing with HF signs and symptoms.

Almost all participants knew that some symptoms, for example, breathlessness, ankle swelling, fatigue, weight change, daytime sleepiness, and shortness of breath, were caused by HF. A caregiver wife described the situation as follows: “When I see the swollen ankles, I understand that it is a sign of heart failure, and I weigh my husband to check whether there has been a weight change.” Another son caregiver reported, “Yesterday, my mother was very tired [fatigue], and she was breathing with difficulty [breathlessness]. I realized they were HF symptoms.” One wife caregiver reported, “I know that HF causes fluid retention, so when I see that the feet of my husband are swollen, I understand that this is an ‘alarm bell’ indicating that his HF is not going well.” In response to symptoms, caregivers described trying out remedies that were not effective. One caregiver reported, “Yesterday, my dad had dyspnea, and I put a pillow behind his shoulder to allow him to breathe better.” Unfortunately, this caregiver had to call the provider and do something about this dyspnea, which worsened quickly.

In this sample, treatment implementation was often limited by the caregiver's lack of confidence in applying a specific practice, especially administering an extra diuretic dose when ankle edema occurred or clinical conditions worsened rapidly. Caregivers administered an extra diuretic only after calling the doctor because they feared taking on such “medical” responsibility. One caregiver explained, “I don't feel confident in administering any medication when my husband doesn't feel well. The cardiologist told me that if his feet are swollen, I can give him an extra diuretic, but I'm not a doctor, and I don't want to make mistakes.” When caregivers lacked confidence in self-care management in the face of worsening clinical conditions, a visit to the emergency department was the only solution. As a son caregiver reported, “We went to the emergency room because I felt unable to do anything.”

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Discussion

The aim of this study was to describe CC with regard to self-care maintenance and management in a sample of HF caregivers from Southern Europe. Our study results provide in-depth information on the practices performed by caregivers during their contribution to HF patient self-care, especially when dealing with the signs and symptoms of HF. To our knowledge, this study is the first to describe the activities that HF caregivers perform in Southern Europe. Because caregivers play a key role in improving HF patient outcomes19 and family caregiving is very important in Southern Europe,29 knowing the specific practices performed by these caregivers and how they contribute to HF self-care is important. There is an urgent need to design culturally competent interventions that include patients and caregivers; such interventions are still uncommon in this world region.

Similar to other research,11 we found that caregivers contributed to self-care maintenance with specific practices related to monitoring medication adherence, educating patients about how to monitor symptoms, motivating patients to exercise, and reinforcing dietary restrictions. However, we also found that that some practices were not correct or evidence based. For example, recommending that patients check their weight every week may be insufficient to detect fluid overload; daily weighing is recommended. Also, the use of a tape to measure the circumference of ankles is not recommended in medical guidelines.30 These incorrect practices may be the result of caregivers using their own experiences or considering the recommendations of laypersons, rather than any formal education. Despite certain incorrect practices related to self-care maintenance (eg, weighing the patient weekly), our caregivers implemented good strategies to support patient self-care maintenance that were also acceptable to patients, such as medication reminders, a 1-g single-dose dispenser for salt, and physical activities that fit the patient's preferences (eg, walking together with patient or the use of a treadmill). The systematic review by Buck and colleagues11 reported the many activities performed by caregivers in their contribution to self-care, but in our study, these activities have been identified and described in more depth. For example, Buck and colleagues reported that caregivers contributed to improving medication and diet adherence, but the specific strategies adopted by caregivers were not reported.

We also found that the CC to self-care maintenance (specifically physical activity) was influenced by a caregiver's perceptions of disease severity; this finding has not been mentioned in previous qualitative and quantitative studies. Indeed, in a previous study that we conducted,19 the predictors of the CC to self-care maintenance, which included physical activity, were HF duration and caregiver confidence but not perceived disease severity. The influence of perceived disease severity on the CC to self-care maintenance has not been studied to date. A recent study showed that worse disease severity from the patient's point of view was correlated with a higher level of self-care maintenance in patients with HF,31 but we do not know whether this is also true regarding the caregiver's point of view. It could be that caregivers have a clearer interpretation of the symptoms of disease severity than patients do, but this topic requires further research. A recent study conducted in Iran32 found that some symptoms of disease severity (eg, fatigue) were not interpreted consistently by patients with HF and their caregivers. Given the mismatch in symptom interpretation between patients with HF and their caregivers,33 it could be that caregivers are better than patients at evaluating disease severity and thus implement self-care maintenance and management activities accordingly. More research is needed in this area.

Regarding the CC to self-care management, almost all caregivers were able to recognize HF symptoms, but their practices toward these symptoms were not all correct, and in some cases, these practices could be even unsafe for patients (eg, not calling the provider in the case of dyspnea). Regarding certain specific practices (eg, providing an extra diuretic), caregivers were afraid to take on such a “medical” responsibility. The qualitative accounts revealed that our caregivers had low levels of confidence in this self-care management practice, probably because they lacked knowledge about this strategy. This finding is consistent with a previous quantitative study that we conducted,19 in which only about the 20% of caregivers had adequate levels in CC to self-care management and confidence. In that study, 52.2% of caregivers were not likely to provide an extra diuretic given trouble breathing or ankle swelling. Also, another quantitative study conducted in the United States34 showed that the CC to patient self-care management was low.

The findings of our study are similar to those of a study conducted in Canada by Harkness and others,35 who found that the CC to HF self-care consisted of encouraging medication adherence and performing symptom monitoring. Harkness and colleagues reported that the CC to HF self-care also consisted of arranging appointments, coordinating care, encouraging independence, and taking action, which did not emerge in our analysis. The varied findings further emphasize the importance of studying HF caregiver practices at a population or country level, especially given differences between healthcare systems and cultures.

In a previous quantitative study,19 we have shown the extent to which caregivers contribute to HF patient self-care, but this qualitative study is unique in its in-depth description of specific caregiver practices and contributions to self-care maintenance and management. Specifically, this study helps explain that caregivers may be performing incorrect practices (e.. not calling the provider in case of HF symptoms) or providing patients with misinformation (eg, weekly weighings). Our study suggests that a lack of caregiver confidence plays an important role in influencing the CC to HF self-care. That is, when caregivers lack confidence, they are reluctant to contribute effectively to patient self-care, as we found in this study, especially in managing the symptoms of HF exacerbation. The relationship between confidence and CC has been reported in quantitative studies19; our results help illuminate new approaches to patient and caregiver education and the urgent need for interventions in this population.

The findings from this study have several important clinical implications, including the need for clinicians to be sensitive to the cultural preferences of populations in Southern Europe, particularly Italy. Our results suggest that clinicians should assess caregivers' knowledge about HF and HF self-care. Identifying incorrect views is an important step in optimizing the CC to self-care. Clinicians should also regularly assess caregiver practices regarding their contribution to self-care maintenance and management. Correct practices should be reinforced and encouraged (eg, using 1-g salt doses to control sodium intake), and unsafe or incorrect practices identified and remedied. This will necessitate caregiver education in correct and evidence-based self-care practices to maintain disease stability and respond to symptoms when they arise.

This study has several limitations. First, we conducted our study using a convenience sample. Second, participants were enrolled in only 1 country from Southern Europe. Because differences, including cultural differences, exist between Southern European countries, the results of this study should be generalized with caution.

Further research should be conducted on the CC to HF self-care. In a recent commentary, Vellone36 outlined the first conceptual framework addressing the CC to self-care. In this framework, he identified the predictors of the CC to HF self-care at the caregiver, patient, and dyadic levels; the process of the CC to self-care, including the CC to self-care maintenance, management, and confidence; and the outcomes of the CC to self-care at the caregiver and patient levels. The outcomes of the CC to self-care remain unknown, even though a recent study21 found that an increased CC to self-care maintenance was associated with better event-free survival in patients with HF. However, the same study revealed that the CC to self-care management was associated with worse patient event-free survival. Future research should more thoroughly study both the patient and caregiver outcomes associated with the CC to self-care maintenance and management.

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Conclusion

In conclusion, in this study, we have identified the specific strategies that HF caregivers adopt in dealing with HF. Some of our findings reinforce previous studies conducted regarding the CC to HF self-care, but our study provides an in-depth description of these contributions and shows that the practices used were not always correct. Because our study was conducted in Southern Europe, the correct CC practices could be used to implement culturally sensitive interventions for caregivers living in this world region.

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What's New and Important

  • Caregivers of patients with HF contribute to self-care maintenance with specific practices related to monitoring medication adherence, educating patients to monitor symptoms, motivating patients to exercise, and reinforcing dietary restrictions.
  • Caregivers of patients with HF contribute to self-care management by recognizing symptoms of exacerbation and implementing treatments to relieve symptoms.
  • Some of the practices related to HF self-care maintenance and management that have been adopted by caregivers are incorrect and potentially dangerous for the health of patients with HF. Clinicians should monitor caregiver practices and educate caregivers to adopt evidence-based practices.
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Acknowledgment

We kindly thank the Centre of Excellence for Nursing Scholarship, Rome, Italy, for funding this study.

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Keywords:

Self-care; Caregivers; Heart failure; symptom assessment; treatment adherence and compliance; health behavior

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