A qualitative study of living with the burden from heart failure treatment: Exploring the patient capacity for self‐care

Abstract Aim To explore how patients with heart failure perceive their capacity to manage treatment and self‐care. Design A qualitative descriptive study. Methods Patients (N = 17) were recruited from a nurse‐led heart failure outpatient clinic from May–August 2017. Data were collected through individual semi‐structured interviews and analysed using systematic text condensation. Results Three main themes were identified as follows: “Personal characteristics,” “Coping strategies” and “Emotional and informative support.” The first main theme contained the subthemes “inherent strength” and “maintenance of a positive attitude.” The second main theme included the subthemes “selective denial,” “ability to adapt by setting new goals” and “careful selection of information.” The third main theme contained the subthemes “support from health professionals enhancing patient capacity,” “support from next of kin in patients' self‐care” and “practical support and hope from peers.”


| INTRODUC TI ON
Heart failure (HF) is a clinical syndrome causing a potential heavy burden from illness and symptoms (Ponikowski et al., 2016). HF patients are often enrolled in complex treatment regimens with a heavy medication load and demanding lifestyle changes (Kessing, Denollet, Widdershoven, & Kupper, 2016); additionally, treatment may become a burden (Eton et al., 2012;Gallacher, May, Montori, & Mair, 2011;May et al., 2014). This study is based on the burden of treatment (BoT) framework. BoT is defined as the "workload" delegated from health care to patients and the impact this "work" has on patients' well-being and functioning (Eton et al., 2015;Gallacher, May, Langhorne, & Mair, 2018;May et al., 2014). Capacity is a central concept in the BoT framework (May et al., 2014). As patients balance the workload from treatment and self-care with their capacity, their workload may exceed their capacity and create a BoT (May et al., 2014;Shippee, Shah, May, Mair, & Montori, 2012). Patients' ability to manage the BoT is important in affecting the outcomes and stability of HF disease (Eton et al., 2012;Shippee et al., 2012). However, capacity is an emerging concept and descriptions of capacity based on HF patients' experiences are sparse (Boehmer et al., 2016). Therefore, HF patients' experiences of capacity when facing treatment and self-care is important. Moreover, we need to understand what HF patients consider to be sources of capacity and relief from the BoT.

| BACKG ROU N D
Capacity is an evolving concept defined as the patients' abilities (e.g. personal, physical, mental, social, financial and environmental), | 805 NORDFONN et al. resources and limitations that affect the patients' capability to address demands from health care and life with a chronic illness (Boehmer et al., 2016;Eton et al., 2012;Lippiett, Richardson, Myall, Cummings, & May, 2019;May et al., 2014;Shippee et al., 2012). Patient capacity is viewed as a complex and dynamic construct, as it includes both the individual patients' functional performance and depends on the social skills and social capital of patients and members of their social networks (Boehmer et al., 2016;May et al., 2014). Boehmer et al. (2016) described patient capacity as the achievement of the ability to reshape one's biography of life with chronic condition. In addition, patients' resources, their social networks, an environment of kindness, empathy, a feasible treatment plan and the ability to carry out actions required for health care and self-care despite competing priorities affect capacity (Boehmer et al., 2016). Importantly, capacity is not a static entity but a dynamic accomplishment that is hindered or bolstered by psychological and social mechanisms and that varies depending on experiences of exacerbating events or stability (Boehmer et al., 2016;Lippiett et al., 2019). To the best of our knowledge, capacity is a concept that has not been previously described in HF patients; however, other notions such as capability for self-care work as well as barriers and facilitators of selfcare have been used (Wanchai & Armer, 2018). Capability for HF selfcare relates to patient compliance and describes the level of adherence to treatment recommendations, acceptance of illness and occurrence of frailty. Low capability for HF self-care is linked to reduced adherence to treatment and treatment recommendations (Mlynarska, Golba, & Mlynarski, 2018). Additionally, Wingham, Harding, Britten, and Dalal (2014) state that patients living with HF undergo transformations while adjusting to the life-limiting, lifelong condition. This process is not a linear trajectory but a progression through different stages shaped by HF patients' attitudes, strategies and support, demanding constant effort to maintain health. Burdens related to treatment and self-care in HF have been characterized in prior research as overwhelming, difficult work; and adherence to HF self-care and treatment regimens has been reported to be low (Gallacher et al., 2011;Mlynarska et al., 2018;Riegel et al., 2019). Despite patients' knowledge of self-care tasks, the burden of the illness and treatment generates problems in maintaining self-efficacy, which is a personal attribute that changes over time by learning from attempts to manage the HF condition (Nordfonn, Morken, Bru, & Husebø, 2019;Riegel et al., 2019;. None of the aforementioned notions fully captures the capacity term in the HF context. Therefore, how HF patients experience their capacity to manage treatment and what provides HF patients with relief from burden are important aspects to further address. The aim of this study was to explore how HF patients perceive the capacity to manage treatment and self-care.

| ME THOD
This study had a descriptive, explorative qualitative design to understand HF patients' experiences of the capacity for management of treatment and self-care using individual semi-structured qualitative interviews.

| Recruitment of participants
A purposive sampling strategy was used among the patient population of one nurse-led HF outpatient clinic located in the western Norway (Polit & Beck, 2012). In the clinic, HF patients see their assigned HF nurses for a limited time for up-titration of medical therapy at different time increments: every other week, once a month, every third month or once every 6 months. During the consultations, the nurses consult with a cardiologist for the adjustment of medications (McDonagh et al., 2011). A study nurse screened the patient list at the outpatient clinic including the eligible participants emphasizing the latest HF nurses' journal note in the medical record according to the New York Heart Association (NYHA) classification.
The inclusion criteria were diagnosis of HF confirmed by echocardiography at least 3 months prior, NYHA class II or class III and age of 18-75 years. Patients were excluded if they were unable to speak Norwegian or suffered from cognitive impairment. Eligible participants were first invited by an invitation letter explaining the study and second, by an oral invitation from the HF nurse at the outpatient clinic. Patients who accepted the invitation were contacted by telephone to arrange a convenient date and time for the interview.
Forty-nine patients were eligible. Seventeen participants, 11 male and six female patients (Table 1: Participant characteristics), gave their written consent to participate in the study.  (Eton et al., 2012;May et al., 2014;Sav, Salehi, Mair, & McMillan, 2017) (Table 2: Interview schedule). Demographic information, such as age, education level and marital status, time since diagnosis, NYHA class, device, aetiologies and comorbidities, was collected from the participants and from medical records after the interviews.

| Rigour
To obtain rigour during the data collection process, the same interviewer conducted all of the interviews, ensuring authenticity through prolonged engagement and continued until no new elements were obtained from the analysis of the interviews and an agreement was made among the authors that saturation was reached (Malterud, Siersma, & Guassora, 2016;Polit & Beck, 2012). The interviewer was not clinically involved in the participants' care.
Coding, categorization and generation of themes were managed by the three authors to ensure that the process was rigorous and that the themes were consistent with the data. All authors independently analysed the transcripts and then discussed their findings with the research group until an agreement was reached on the final analysis. Peer checking was used to supplement the interviewees' proofreading efforts to ensure reflexivity, a hallmark of qualitative research and to increase reliability (Lincoln & Guba, 1985;Rolfe, 2006). The researcher kept an audit trail during the study to keep careful documentation of the work in the form of a journal with interview notes and observation notes. This was done to make thought process explicit, identify and reflect on personal knowledge and experience and consider how these processes may have had an effect on the research and analytical process (Carlson, 2010;Sutton & Austin, 2015).
Clear, precise descriptions of the context, the selection and characteristics of the participants, the collection of data and the process of analysis are provided in this paper and extensive participant quotes are included in the findings section to ensure credibility (Polit & Beck, 2012). The Consolidated Criteria for Reporting Qualitative Research (COREQ) 32-item checklist (Tong, Sainsbury, & Craig, 2007) was used as a guide to achieve comprehensive and explicit reporting of the study (see File S1).

| Analysis
The first author transcribed the audio recordings verbatim. After being checked for accuracy by comparing the transcripts to the audio recordings, the transcripts were stored in the computer software program NVivo 12 (QSR International Pty. Ltd.). NVivo 12 was used to aid data management and to enable a systematic approach to analysis. Data analysis was carried out by the use of systematic text condensation (STC) (Malterud, 2012(Malterud, , 2017. STC consists of 4 phases of analysis. In phase one, the primary goal was to obtain an overview and create preliminary themes. In phase two, the themes and subthemes were generated based on preliminary themes. In phase three, the participants' quotes, as meaning units, were organized in a hierarchical theme structure and condensed. Phase four involved synthesizing the most nuanced themes identified in phases two and three, resulting in the three main themes (see Table 3: Themes and subthemes). A translator proficient in both languages translated the participants' quotes from Norwegian to English to preserve the patients' voices and the meaning of the content.

| Ethics
Ethical permission was obtained from the Regional Committee for Abbreviations: COPD, chronic obstructive pulmonary disease; CRT-D, cardiac resynchronization defibrillator; CRT-P, cardiac resynchronization therapy pacemaker; ICD, implantable cardioverterdefibrillator; NYHA, New York Heart Association; Primary school, 9 years in Norway.
written information regarding the purpose of the interview study, the procedure and the right to decline or withdraw at any time was provided to all potential participants. Information about the study was repeated to participants after inclusion. All participants received information to contact the ward staff at the outpatient clinic if the interview caused the need for further conversation. No identifying patient information was stored together with the data. Anonymity and confidentiality were secured by labelling interview transcripts by interview number and participant identification key, and data were stored separately on the hospital server.

| FINDING S
A total of 17 patients were included in this study. The study participants ranged in age from 46-74 years (mean 62 years); 11 were male and six were female. Thirteen of the participants lived with a spouse or partner; the other four lived alone.

| Theme 1: Capacity through personal characteristics
This theme highlights how patients cultivated a set of personal characteristics linked to the capacity to deal with HF and self-care.
Personal characteristics included the subthemes "inherent strength" and "maintenance of a positive attitude about life."

| Theme 2: Capacity through coping strategies
This theme incorporates the subthemes "selective denial," "ability to adapt by setting new goals" and "careful selection of information." The theme highlights the capacity-giving coping strategies the participants used in their everyday lives dealing with the burden of illness and self-care.

| Subtheme 2.1: Selective denial
Many of the participants described their coping as involving some degree of denial due to the severe illness.

| Theme 3: Capacity through emotional and informative support
The final theme was associated with the patients' experiences of emotional and practical support as a strong relief from the burden derived from treatment and self-care and a manner of regaining capacity. The support they gained from health professionals, next of kin and peers was important in their everyday capability for HF self-care.

| Subtheme 3.1 Support from health professionals enhancing patient capacity
Most participants described distress related to HF treatment and self-care. They also noted their valued relationships with the HF outpatient clinic and specialist HF nurses as a source of capac-

| Subtheme 3.2 Support from next of kin in patients' self-care
Most patients expressed support from spouses, children, grandchildren and friends as crucial to maintaining capacity and enduring the burdens of treatment and self-care. Next of kin were seen as a counterbalance, representing what the patients associated with normal life. Patients' spouses were seen as solid supporters in everyday life and as companions carrying some of the burden of severe illness with them. Children and grandchildren helped both in the practical tasks of self-care, such as remembering to take prescribed medicating and to go to appointments and helping patients maintain a good diet and exercise. In addition, patients described the family as providing emotional support by calming them when they were afraid and supporting them during medical appointments:

| D ISCUSS I ON
This study describes aspects of how HF patients perceive the capacity to manage the burden arising from treatment and self-care. The analysis reveals that the patients view their inherent strength and the use of coping strategies as well as social support as their main sources of the capability to manage the burdens of treatment and self-care.

| Capacity and personal characteristics
The participants in this study expressed their personal characteristics, hence their inherent strength and their ability to keep a positive spirit, as an important source of the capacity to manage the burdens of treatment and self-care. These findings align with Lippiett et al. (2019), who stated that capacity constitutes the emotional and personal resources that affect patients' abilities to carry out the work of self-care at a personal level. HF patients experience stressors related to physical capabilities and their sense of self . In response to these stressors, Harkness et al. (2015) found that personal resources such as attitudes and personal characteristics influenced patients' self-care abilities and capacity. Falk, Wahn, and Lidell (2007) and Ridgeway et al. (2014)

| Capacity and coping strategies
The findings in our study point towards HF patients alternating between different coping strategies. when patients recognize HF as a serious illness but deny its personal significance. As a result, patients fail to notice the consequence of their non-engagement in HF self-care. A low acceptance level of the HF diagnosis, which is seen in denial, is related to a low capability for self-care (Mlynarska et al., 2018). Therefore, such coping strategies may hinder patients' abilities to practice proper self-care. However, despite periods of selective denial, Wingham et al. (2014) found that HF patients experience a transformation process as an adjustment to living with a chronic condition. This process is a non-linear path through the stages of disruption, sense making, reaction, response and assimilation to become a person living with HF. Trusted HF nurses focusing on transformation processes in the HF trajectory may help patients in developing coping strategies, increasing capacity and acceptance and setting new goals for their lives with the HF diagnosis.
In the present study, careful selection of information also represented a way of coping. Although medical information is easily accessible through the internet, several of the participants noted restricting which information they would trust. Finding, understanding and trusting medical information is identified as a treatment burden in the long-term illness context (Eton et al., 2017). The Internet has changed the health information landscape and an increasing number of people seek medical information online (Jacobs, Amuta, & Jeon, 2017). Linn et al. (2019) studied information-seeking behaviour in chronically ill patients and found that compared with patients who did not use the internet to prepare themselves before the consultation, those who used the Internet before a consultation with a nurse specialist were more likely to have more negative beliefs about medication and poorer medication adherence. By initiating dialogue with HF patients on their information-seeking behaviour and guiding them towards safe information sites online, HF nurses may affect patients' capacity to better cope with a burdensome and lifelong disease.

| Capacity and social support
The patients in our study described support from health professionals, next of kin and peers as important to their capacity to manage the burdens of treatment and self-care. Our findings indicate that HF nurses at outpatient clinics are a major contributor to patients' feelings of safety and security during an ongoing, chronic condition.
Patients described the outpatient clinic as a surveillance programme and checkpoint that provided comfort and security took the burden off their shoulders and made them worry less in between appointments. As HF does not involve an endpoint in the treatment regimen but rather is a condition that has to be managed over a long period of time (May et al., 2014), the therapeutic relationship with the HF nurse is highlighted in our study as relieving patients from their selfcare workloads. Guidelines (Ponikowski et al., 2016) recommend that patients attend outpatient clinics as a way of up-titrating medication to optimal medication levels for a limited time. Our findings may indicate that patients view the outpatient clinic as providing something more than just medication titration. The feeling of being in safe hands at an outpatient clinic may help and guide patients in the process of transformation to maintain an acceptable state of health (Dubouloz et al., 2010;Spaling et al., 2015;Wingham et al., 2014 In addition to the HF nurse and the outpatient clinic, the findings also indicate the HF patients' next of kin and peers as important contributors to capacity for self-care. These findings align with prior research on the importance of close relationships in long-term illness and highlight the need for health professionals to be aware of the importance of care from next of kin (Kang, Li, & Nolan, 2011;Strøm, Andersen, Korneliussen, & Fagermoen, 2015). Peers were reported as a source of hope, practical advice and normalization of the condition. Lockhart, Foreman, Mase, and Heisler (2014) found that HF patients took better care of themselves and were motivated by engaging with peers. As social support may be an independent factor in mortality and morbidity in HF, talking with, sharing and learning from other HF patients is important (MacMahon & Lip, 2002). Therefore, HF nurses should engage HF patients in peer partnerships as a tool for increased self-care and capacity.

| Implications for practice
Our findings suggest that healthcare professionals should focus on and pay attention to the patients' ability to manage their illness, from treatment and self-care. Initiating a dialogue with the patients, focusing on both the patients' resources and limitations of their social network capacity, might help patients go through the transformation process and achieve a normalization of the chronic illness. Engaging and helping patients manage the changing dynamic in their capacity for self-care work, acknowledging the natural fluctuations of energy that follows a severe diagnosis and the need for relief and providing help and support from healthcare professionals and others are crucial aspects of health management.

| Limitations
This study has some methodological limitations. First, credibility may have been affected, as we did not allow the recipients to check our interpretation of the data. To secure trustworthiness and validity, we used peer checking to avoid bias in the study. However, participants' proof- In addition, 11 of the 17 participants were male, which may have caused an unintended gender bias (Affleck, Glass, & Macdonald, 2013). Still, as men are reported to have a higher incidence of HF across all ages (Rosengren & Hauptman, 2008), our study may contribute with important knowledge on male HF patients' experience of capacity. However, to account for gender bias in research, we could have recruited a strategic sample of participants to secure equal representation in the study population.

| CON CLUS ION
In conclusion, this study identified elements that HF patients described as enhancing their capacity for treatment and self-care through a range of factors on personal, coping and support levels. Through different coping strategies, such as selective denial and setting new goals and through what the participants perceived as inherent strengths and personal characteristics, the HF patients both attained and gained capacity. In addition, our findings demonstrate the importance of the perception of being in safe hands through the support of trusted health professionals, the care of next of kin and hope provided by peers. Patients and their social network must navigate and coordinate their different and sometimes complex treatment regimens, which, with low capacity, may lead to disruption and poor clinical outcome (Demain et al., 2015;Eton et al., 2012;May et al., 2014;Shippee et al., 2012). By investing in improving HF patients' capacity and helping manage their workloads from treatment, HF nurses may promote better experiences of illness, more effective healthcare consumptions and better healthcare outcomes (May et al., 2014). HF nurses should be more aware of their role in HF patients' process of transformation and in the dynamic work of building the capacity for treatment and self-care.