Heart failure (HF) is a serious epidemic affecting an estimated 6.5 million Americans and is expected to cost the United States more than $30 billion annually by 2020.1 Its prevalence is expected to rise to about 8 million Americans by 2030.2 Heart failure is a deadly condition with a 5-year mortality rate estimated at 45% to 60%.3 Unlike other cardiovascular diseases, HF is growing in prevalence because recent medical advances have improved the longevity of patients suffering cardiac events such as myocardial infarctions.4 Patients with HF exhibit poor quality of life owing to symptoms such as dyspnea, fatigue, depression, and health outcomes such as frequent exacerbations and readmissions.5,6
One focus of HF care is self-management, which encompasses activities that are carried out by patients at home. With optimal self-management, up to two-thirds of hospitalizations could be prevented.7 In HF, self-management involves managing multiple medications, monitoring fluid intake, reducing dietary sodium, optimizing physical activity, monitoring weight on a daily basis, and seeking timely care.8 Nonadherence to many of these self-management recommendations can lead to exacerbations, hospitalizations, and even death.9 Despite these HF consequences, adherence to HF self-management remains low because of barriers that include complex regimens, lack of education, multiple comorbidities, and distress.10
Informal caregiving is a type of social support wherein framily members support a loved one who is ill.11,12 “Framily” is our term that encompasses family members and friends who support patients as they manage illnesses. The most common type of caregivers are spouses or significant others but may also include adult children, children-in-law, parents, siblings, and friends.13 Lack of informal care can be detrimental to self-management.14 Informal care from spouses or significant others, either married or living together, may reduce hospitalizations, mortality risks, and depression15–17 and improve treatment adherence, symptom monitoring, and decision-making among patients with HF.18 Patients with weak spousal bonds have been found to have lower 4-year survival rates than patients with strong marital relationships (41.9% vs 77.6%).19
Framily's involvement and experiences can vary based on their relationship with the patient. Meta-analyses across multiple chronic conditions found that spouses and significant others experienced more caregiver burden and depression than other types of caregivers did.20–22 On the other hand, framily with a strong relationship bond to the patient (such as offspring) experienced higher satisfaction in caregiving than those with weaker bonds (such as in-laws).20–22 Depressive symptoms are common among patients with HF and their framily members,23,24 and their moods can influence one another.25 Despite this, there remains limited literature on the richness of the combined emotional experience of patient-framily dyads who manage HF. Therefore, the objective of this study was to understand the cognitive and emotional experience of patients and their framily as they manage HF.
This study represents a secondary analysis of a mixed-methods study that was designed to understand the contributions of both patients and family members to HF self-management. All study procedures were approved by the local institutional review board and research and development committees.
Patients were recruited from an HF clinic at a major academic medical center between January and April 2017. Patients were eligible if they had a documented diagnosis of HF with reduced or preserved left ventricular ejection fraction, were not in active cancer treatment, did not have cognitive impairment as indicated by chart review, and did not have a paid caregiver (eg, home nurse). Patients were required to participate with a family member or a friend contributing to their HF self-management who were willing to be interviewed for the study. Patients were screened through medical charts by study staff and if eligible were sent a study invitation letter with a contact. Up to 3 calls were made after letters were sent. Patients were provided detailed information about the study, asked about their willingness and the willingness of their caregiver to participate, and both were scheduled for an in-person office interview at their next clinic appointment or at a time of their convenience. Participants were compensated with a $25 gift card for their participation.
Data Collection and Analysis
A semistructured interview was conducted with each patient-framily member dyad. The interview's main objective was to allow the dyad to share their experiences of working together to manage HF and coordinate healthcare. The interview questions addressed daily challenges related to HF, the role of framily members, communication with providers, utilization of technology, and the motivation of family members to provide care. Interview guides were developed based on constructs from the Dyadic Health Behavior Change Model of Trivedi et al.26
The 30- to 60-minute interviews were conducted in 2 steps. First, interviews were conducted jointly with the patient and framily member and then with each individual alone in order to capture the interactive components of the relationship while providing an opportunity for participants to share opinions in private.27 Interviews were audio-recorded and professionally transcribed. Interviewers maintained detailed notes to assist with coding and analyses. We used latent thematic analyses following the process described by Braun and Clark.28 We generated initial codes that addressed “health beliefs,” “framily experiences,” and “relationship.” Inductive coding was used to identify other themes derived from the data. Interviews were conducted until thematic saturation was reached (no new themes emerged from dyads around our questions of interest). Researchers developed a coding scheme, and Atlas.ti software was used to code the data. Two authors coded the interviews independently, checked for interrater agreement, and discussed discrepancies to create a final coded data set.
A total of 232 letters were sent with follow-up telephone calls. Sixteen dyads and 1 patient-caregiver triad were interviewed to achieve thematic saturation. More than half (55.5%, n = 10) of the framily members were spouses or significant others; the remaining included children (n = 4), 1 sibling, 1 parent, and 1 friend (n = 3). One dyad opted out of being recorded so their interview transcripts could not be analyzed. Fifteen dyads completed the demographic questionnaire and their characteristics are presented in Table. The mean (SD) age of patients was 66 (14) years (Table) and of framily members was 59 (12.3) years. Of the total sample, 55.5% of family members were in a romantic relationship with their patients. Participants were non-Hispanic white (48.6%), Hispanic or Latino (25.7%), black (5.7%), Asian (5.7%), and multiracial (20%). Other participant characteristics are displayed in Table.
We derived 3 themes around the experience of managing HF: (1) health beliefs of patients and framily members shaped their experience of illness; (2) patients' and framily members' experience of illness were characterized by negative emotional effects; and (3) quality of patient-framily member relationships reflected the experience of illness (Appendix A).
Theme 1: Health Beliefs of Patients and Family Members Shaped Their Experience of Heart Failure
We found that the health beliefs of patients and framily members were characterized by acceptance, optimism, and pessimism. Some patients expressed acceptance of the limitations they faced and optimism about their current life and future. An 87-year-old female patient shared,
I'm very well. I look around at the people where I am. There are people on these scooters and walkers and I think I'm terrific. Yes, I have cardiomyopathy, which is an enlarged heart, or heart failure. Many people there have HF, and they aren't as in good shape as I am. So I don't find it a handicap per se.
Rather than dwelling on her physical limitations, a 27 year-old patient focused on activities she could still do to enjoy life. She explained,
“I don't think I have a worse life because of my health. I've lived a different life, but I've probably done more things than healthy people have done. …I think I have a really unique way of viewing my health and I'm so optimistic and happy, and a lot of people aren't like that.
A 72 year old male patient shared, “I can still be fruitful in my life. I can still be productive. I have to limit…But I have these grandkids that deserve some guidance and my knowledge.” Framily members also expressed optimism about the patient's life. For example, a patient's mother stated that she intentionally aimed to have a positive outlook on her daughter's health conditions. She explained, “You have 2 paths to go down, so you have to pick which one. And so, I choose to be uplifting and optimistic.”
However, not all patients and framily members were optimistic. A 73 year old male patient noted,
I had a strong body and now as my heart doesn't function like that, it was hard to accept. …I would just not be fun to be around. I think I've gotten past that phase. The mindfulness helped me. But I'm going like why the hell me?
A 61 year-old patient shared, “I can't really blame it on anything because I mean it could have been a number of things. But I can't work. I'm SSI assisted funding and it kind of puts you in the loop and you feel like…everything's being picked away from you bit by bit. And it seems like you just can't—the same pieces that are being picked away from you, you can't just grab them and put them.” Framily members confirmed patients' pessimism. A 34-year-old wife recounted, “He was like, ‘Well, you don't have to worry about it, I'll be dying soon anyway.’”
Theme 2: Patients and Framily Members Experienced Negative Emotions in Coping With Heart Failure
While the thoughts were both positive and negative, the emotional content of the conversation was largely negative. We found that patients and framily members experienced depression, anxiety, and caregiver burden. Framily members noted that helping their loved ones manage HF resulted in frustration, fear, and sadness. The wife of 1 patient noted, “It was a very big deal and scary that you [the patient] got a defibrillator. So obviously there was a lot of sadness and anger and frustration that I had because I wasn't in control over any of this.”
One patient's sister noted that her frustration was more directed toward the healthcare system than on the patient's health condition. She explained, “I think that the system is really frustrating for her and as a result it's frustrating for me. I feel bad. I don't know what to do to help her and I don't understand sometimes because I don't have to navigate it the way that she does.”
Depression and anxiety were frequently discussed by patients and framily members. Among patients, depression was triggered by their inability to work. A 52-year-old woman patient noted, “My depression is beyond anxiety. I can't even breathe half the time and it's starting up again…and it has everything to do with me not being able to work.”
A 64-year-old patient shared, “I really am wanting to go back to work. I've never not worked and I'm feeling really lost…I feel freakin worthless, I really do.” Patients' inability to work not only enhanced the onset of depression, but also created financial issues, likely contributing to their depression and anxiety even more.
Both patients and caregivers perceived the negative effects of caregiver burden. Some patients expressed that they did not want to be a burden to their caregivers and families. A 64-year-old patient expressed her concern for her son in this way: “I don't really want to bother him [speaker's son] with my issues…I don't want to discuss anything with him either about what's going on with me other than I have an appointment, that's it.” Framily members also talked about facing caregiver burden caused by lack of finances of HF self-management. One wife shared, “It does get frustrating because financially it's a burden. That's the biggest burden—finances. If I didn't have to worry about that, taking care of him would be a breeze.”
Theme 3: Quality of Patients' and Framily Members' Interpersonal Relationships Were Integral to How They Experienced Heart Failure
Patients and framily highlighted the importance of their interpersonal relationships in managing HF. Framily members were motivated by love and affection of the relationship, feeling responsible for the patients, and a sense of duty. The sister-in-law of a patient described the degree of closeness in their relationship this way: “So it's like emotional because she became like my ‘bestest’ friend.” Dyads reported that immediately following their HF diagnoses, their relationships became influenced by HF management tasks. But over time, their relationships tended to become more influenced by love and gratitude. A patient's wife shared, “I didn't want to nag him anymore. I was tired of nagging him. I realized that I was wasting more time instead of enjoying the time that I had with him…I think what helped is remembering how much I loved him.” Other framily members were motivated by love and affection. The daughter of a patient shared that her motivation was based on love: “I love her…She is dear, sweet, loving, kind. So my motivation is that I care about her. That's my motivation.”
Framily members believed that they were the only ones who would be responsive to patients' needs. As noted by a wife, “I'm very health conscious all the time. I'm the opposite of him [patient]. I kind of almost like mother him. I'm always noticing little things that are going on.” Another wife shared, “There's nobody else who would help him. Because he's never been open with friends and things like that locally about his health.” The son of 1 woman patient noted, “I'm the primary caretaker of my mother and that's all, so any other person cannot [properly] take care of my mother.” Framily members were also motivated by a sense of duty. One daughter shared, “Because I'm the oldest, so I feel that's my job…it's our job to take care of him because he took care of us”.
Key results from our study show that the way in which patients and framily members experience HF is influenced by their health beliefs, negative emotions, and the quality of their dyadic relationships. Although managing HF can be highly challenging and emotionally taxing, many patients and framily members did not view their life limited by HF.
Our findings suggest that people's health beliefs play an important role in shaping their motivation and perceived quality of life. According to the Health Behavior Change Model, health beliefs play a significant role in changing health-related behaviors and are based on perceived severity, perceived susceptibility, perceived benefits, perceived barriers, self-efficacy, and cues to action.29 Health beliefs can influence patients' ability to manage symptoms of illness and quality of life.30 In fact, for incurable health conditions such as HF, quality of life may be critical in maintaining respect and dignity and ensuring patient-centered care.
Negative emotions of managing HF and its long-term effects could influence how patients and framily members view their experience of HF. Our findings on the impact of HF on negative emotions were consistent with literature. In a qualitative study with patients with HF,31 authors found that the lived experience of HF was characterized by isolation. Similar to our results, patients with HF felt useless or frustrated because they can no longer work or have an active lifestyle as they had had prior to the onset of HF. Patients from this study also felt anger and resignation throughout the process of acceptance of their health condition. In the same study, the experiences of caregivers were characterized by lack of clarity about their role and burden, but also love and affection.
Our findings that the quality of dyadic relationships influences HF self-management are consistent with a few prior studies. Dyads can strongly influence each other's emotions, confidence, and behavior.32,33 Strong dyadic relationships are associated with better health outcomes, lower mortality, and less distress in patients.32 Findings support our Dyadic Health Behavior Change Model, which theorizes that the interpersonal relationship between a patient and framily is as important for self-management as their individual experiences.26 Other recent theories make a similar case. The Theory of Dyadic Illness Management34 posits that the dyad can be viewed as an interdependent team and that dyads who view their illnesses as a shared problem invest in behaviors that benefit health outcomes for both. Similarly, the Theory of Caregiver Contributions of Heart Failure Self-care,35 a caregiver-specific adaptation of the Situation Specific Theory of Heart Failure Self-care,36 notes 10 theoretical ways in which caregivers may contribute to, or detract from, appropriate HF self-management. Yet, current clinical guidelines on enhancing self-management of HF remain patient-focused with limited incorporation of framily members. The lack of emphasis on the role of framily may at least partly explain why the effects of existing HF self-management interventions are difficult to sustain.37
Our results should be viewed in the context of some limitations. First, those who participate in dyadic interviews are different from those who choose to participate in individual studies. Second, all dyads were recruited from 1 site where all patients were treated by the same cardiologist. Third, we recruited 17 dyads from 232 letters that were sent. Although qualitative studies are not designed to generate generalizable knowledge, this may have contributed to skewed dyadic perspectives. It should be noted that we were seeking thematic saturation, which we achieved after 17 dyads. It is possible that more dyads would have been willing to participate had we wanted to continue with our study. Future studies may address these limitations through purposive sampling techniques.
HF is a complex illness that requires balancing of self-management responsibilities. The role of framily has often been neglected in this task, and our study sheds light on how health beliefs, emotional effects, and quality of dyadic relationships shape the experience of managing HF. Among patients with framily members who play a significant role, it is imperative that their input is valued. Greater attention to dyadic relationships in the care networks of patients with HF may improve our care of HF.
What’s New and Important
- The quality of the relationship between patients and their caregivers influences the experience of managing HF as a team.
- Patient-caregiver dyads experience both positive and negative health beliefs as they manage HF.
- Family members and friends share in patients' emotional experience in managing HF.
We thank the participants who volunteered their time for this study.
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