Disability and Rehabilitation

ISSN: 0963-8288 (Print) 1464-5165 (Online) Journal homepage: http://www.tandfonline.com/loi/idre20

To be on sick-leave due to heart failure: a qualitative perspective Camilla Lindbäck & Lena Nordgren To cite this article: Camilla Lindbäck & Lena Nordgren (2015) To be on sick-leave due to heart failure: a qualitative perspective, Disability and Rehabilitation, 37:19, 1732-1738, DOI: 10.3109/09638288.2014.974835 To link to this article: http://dx.doi.org/10.3109/09638288.2014.974835

Published online: 24 Oct 2014.

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Date: 05 November 2015, At: 21:59

http://informahealthcare.com/dre ISSN 0963-8288 print/ISSN 1464-5165 online Disabil Rehabil, 2015; 37(19): 1732–1738 ! 2014 Informa UK Ltd. DOI: 10.3109/09638288.2014.974835

RESEARCH PAPER

To be on sick-leave due to heart failure: a qualitative perspective Camilla Lindba¨ck1 and Lena Nordgren1,2,3 School of Health, Care and Social Welfare, Ma¨lardalen University, Eskilstuna/Va¨stera˚s, Sweden, 2Centre for Clinical Research, So¨rmland County Council/Uppsala University, Eskilstuna, Sweden, and 3Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden

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Abstract

Keywords

Purpose: The aim of the present study was to explore and describe meanings of being on sick leave due to heart failure. Methods: The study was conducted in Sweden during 2011–2012. Five men and one woman, aged 46 to 62, were interviewed. A reflective life-world research approach based on phenomenological philosophy was used. The result of the analysis is presented in three themes. Results: To be on sick leave due to heart failure implies a life situation characterized by anxiety, insecurity and uncertainty. When rehabilitation professionals do not take on their professional responsibility, sick listed people with heart failure perceive they are dismissed and abandoned. If rehabilitation professionals take on their professional responsibility it can be experienced as supportive. Conclusions: People who are on sick leave due to heart failure are abandoned by rehabilitation professionals and they lack opportunities to participate in their own sick leave/rehabilitation processes. Rehabilitation professionals need to take more responsibility and allow the patients to participate by connecting and recognizing patients as equal human beings. The present results can be used by rehabilitation professionals to reflect on and discuss the needs of people on sick leave due to heart failure.

Heart disease, heart failure, sick leave History Received 28 April 2014 Revised 2 October 2014 Accepted 6 October 2014 Published online 24 October 2014

ä Implications for Rehabilitation   

Heart failure is a chronic condition implying a complicated life-situation. People with heart failure experience abandonment by rehabilitation professionals and lack participation in their own rehabilitation process. In order to support people on sick leave due to heart failure collaboration and coordination between rehabilitation professionals are needed.

Introduction In a recent study, the prevalence of heart failure in Sweden was estimated to 2.2% [1]. Less than 10% of the Swedish heart failure population is younger than 60 years. Accordingly, there are about 20 000 people younger than 60 years of age living with heart failure in Sweden. Heart failure is a chronic and progressive cardiac condition, which cannot be cured despite recent therapeutic advances. This is different from, e.g. coronary artery disease, which is an acute condition that is often successfully treated with, for instance, percutaneous coronary intervention. Furthermore, most people who suffer heart attacks can return to work [2]. Heart failure is characterized by an unpredictable course with stable periods interrupted by episodes of acute and severe deterioration [3]. The characteristic symptoms of heart failure

Address for correspondence: Lena Nordgren, PhD, Senior Lecturer, Clinical Research Advisor, Associate Researcher, RN, School of Health, Care and Social Welfare, Ma¨lardalen University, Box 325, SE-631 05 Eskilstuna/Va¨stera˚s, Sweden. Tel: +46 16 15 37 82. E-mail: [email protected]

include fatigue and shortness of breath [4]. A failing heart causes physical limitations and hinders the ill person’s ability to live freely [5,6]. The condition changes and affects many aspects of life. Consequently, the condition’s complexity makes it difficult for people with heart failure to remain active in working life. Sick leave and rehabilitation processes for people with heart failure cannot be understood solely in terms of biology or as symptoms and signs. Instead, they need to be understood in relation to the patients’ lived experiences and in relation to their lifeworlds. For some people long-term sickness, absence or disability pension can be the answer, but not for all. A recent phenomenological study [7] explained that sicklisting can turn into relief if the sick-listed person has the opportunity to rest after struggling for a longer period of time. Rest is essential for sick-listed persons in order to gain energy for coping with health and life. However, the authors also stated that experiences of being sick-listed can include loss of independency as well as numerous encounters with rehabilitation professionals. In cases of long-term sick listing the sick listed peoples’ lifeworlds are radically changed. They can also experience powerlessness. Furthermore, experiences of feeling wronged when encountering different rehabilitation professionals were

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DOI: 10.3109/09638288.2014.974835

described [7]. However, there is growing evidence that people with chronic and/or severe conditions can benefit from return to work. Such benefits include, e.g. living a normal life; enhanced self-worth; financial security; positive social relationships, connectedness to social life; and a positive self-identity/self-understanding [8–10]. Important factors in the return to work process are support from the surroundings, i.e. rehabilitation professionals, family, employer or social welfare; support of a personal and empathetic nature; guidance and assistance regarding various matters; positive encounters with rehabilitation professionals; and self-understanding [10,11]. The Swedish social insurance system means that people whose working capacity has been reduced due to illness are entitled to sick leave compensation. The entitlement is based on a sickness certificate that includes an assessment of the individual’s work ability in relation to their tasks at work [12]. The sick leave/ rehabilitation process, i.e. the return to work process, in Sweden is usually performed by four different public organizations: the Social Insurance Agency (SIA), the Public Employment Service (PES), the healthcare services and other social services. During the sick leave/rehabilitation process the SIA is responsible for coordination and supervision of activities needed for rehabilitation. In addition, the SIA accounts for clarifying the needs for rehabilitation in consultation with clients, and to take measures to accomplish an effective sick leave/rehabilitation process. The SIA also ensures that the process begins as soon as possible with regard to medical or other circumstances. If the person on sick leave is unemployed the SIA contacts the PES in order to involve them in the process. Physicians are responsible for assessments of the person’s work ability and to issue sickness certificates. Clinical nurse specialists, such as heart failure nurses can have a coordinating function and also provide information and/or education as well as titrating medications. Employers and company health services are also responsible for the sick leave/rehabilitation process. In the present study, all stakeholders mentioned above are labelled ‘‘rehabilitation professionals’’. A Swedish Government Official Report [13] highlights that sick-listed people lack participation in their sick leave/rehabilitation process. According to the report, sick-listed people are treated as passive objects with insufficient possibilities to gain insight into their own sick leave/rehabilitation process. Another Swedish Government Official Report [14] emphasizes that sicklisted people should own their process as much as possible. But in order to do that, sick-listed people need to be able to take control over the process. Then again, participation is a requisite for control. The report also states that the demands on sick-listed people to take responsibility are reduced when sufficient support is lacking. One can only be responsible as long as one has a genuine possibility to participate and affect. In a recent critical analysis [15] of the concept of personcentred participation in healthcare from patients’ perspectives, three phases were identified: (1) the human-connection phase, (2) the phase of information processing, and (3) the action phase. All phases rest on patients’ experiences, values, preferences and needs. In addition, respect and equality are central aspects of person-centred participation. The three phases are of interest in relation to patients’ sick leave/rehabilitation processes; however, the third phase – the action phase – is of special interest. During the action phase, patients ‘‘take action towards health problems by accepting or delegating responsibility as desired, accepting or making final decisions as desired or taking control over care by influencing, accepting or managing care in a person-centred way’’ [15, p. 8]. When applied to patients’ participation in sick leave/rehabilitation processes this means patients’ have a choice to accept or delegate responsibility to rehabilitation professionals,

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be actively involved in decision making concerning their return to work and need to take control over their sick leave/rehabilitation process. However, patients’ participation can be constrained if patients are forced to take more responsibility than they desire; if they have to struggle for their involvement in decision-making; or, experience conflicts between their own expectations and the expectations of professionals [15]. There are few studies to be found in the literature about sick leave due to heart failure. There are a handful of qualitative studies and literature reviews, which briefly mention that people with heart failure can experience their work situation as problematic [5,6,16–18]. One of the present authors [5] found in a previous study that living with heart failure meant not only physical consequences from a failing heart but also a changed and limited life situation. The previous findings also indicated a complicated and complex situation in relation to working life. The problems seemed to be caused by insufficient understanding and support from rehabilitation professionals engaged in the patients’ vocational situation. Thus, more in-depth knowledge about these problems is needed. The research question that formed the basis of the present study was: What does it mean to be on sick leave due to heart failure? The aim of the present study, thus, was to explore and describe meanings of the lived experience of being on sick leave due to heart failure.

Methodology and methods The present study was conducted in Sweden during 2011–2012. It was inspired by reflective lifeworld research, which is a research approach based on phenomenological philosophy [19]. Reflective lifeworld research can be applied on both descriptive – i.e. phenomenological - analyses and interpretive, i.e. hermeneutic – analyses. In the present study, a descriptive phenomenological approach was chosen since the study was exploring an under-studied area. In phenomenological philosophy the concept of lifeworld is central. From the perspective of reflective lifeworld research it is assumed that the lifeworld is affected by illness and disease. People live their daily lives in and through their lifeworld. However, the lifeworld is neither a subjective world nor the opposite, an objective world, but a lived and experienced world. In addition, humans are understood as unities that constantly interact with their surroundings [19]. One person can never fully understand another person’s lifeworld, but by paying attention to people’s everyday life the life situation of other people can be better understood. Setting and sample In the present study, purposeful sampling was used. Inclusion criteria were: a primary diagnosis of heart failure; aged 65 years; presently on sick leave due to heart failure. The sample size was not determined in advance. Sampling was decided instead by the informants’ ability to supply rich and varied data. Informants were recruited from primary care centers and heart failure clinics. Heart failure nurses with personal knowledge of the persons identified eligible informants in accordance with the inclusion criteria. The nurses were asked to look for both men and women. They asked the persons if the researchers could contact them and the persons were informed orally and in writing about the study. Next, the second author contacted the eligible informants, asked them about participation and arranged the time and place for the interviews. One woman and five men, aged 46 to 62, agreed to participate. A detailed description of the informants is provided in Table 1. One informant received onehalf disability pension, two received full sickness benefit and two

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Table 1. Description of the informants. Fictive name, age, marital status Michael, 61, married

Allan, 60, single

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Milan, 56, married

Ingrid, 62, married

Marcus, 46, divorced

Erik, 59, live-in partner

Brief history Michael used to work as an office clerk, but became unemployed. He had been enrolled in the job and development guaranty program with subsidized employment. In addition, he had previously been sick-listed due to depression. His heart failure was discovered by chance when he was struck by a stroke a few months before the interview. At the time of the interview he received full sickness benefit. Allan worked as an office clerk. He had a heart valve transplantation in 1997. In 2010, he had several heart stops, which he described as ‘‘like being dead’’. He was resuscitated seven or eight times and later he received an implantable cardioverter defibrillator (ICD). Subsequently, Allan had several more heart stops but the ICD restored his heart rhythm. In addition, he had one more heart valve transplantation. He was diagnosed with heart failure about one year before the interview. Previously, he received half sickness compensation and worked half-time. However, at the time for the interview, he was on full sickness benefit. His employer had adjusted his tasks at work. Milan had migrated from former Yugoslavia in the early 1990’s. He used to work as a foundry worker. He had been unemployed for two and a half years when his heart failure was discovered by chance as he sought healthcare due to joint pain six months prior to the interview. He remained in hospital for 13 days. Milan had psoriatic arthritis in different joints at different times. After discharge he was full time sick-listed. At the time of the interview, he was also under investigation for Parkinson’s disease. Ingrid worked in an office. She had contacted healthcare as she frequently started to feel short of breath. Heart diseases run in Ingrid’s family. She was diagnosed with heart failure in 2008, a couple of years before the interview. After the initial hospital discharge she was on full time sickness benefit for a couple of days, followed by a short period of half-time sick leave. Quite soon she started to work full time but felt exhausted and out of energy. Subsequently, she was part-time sick-listed for a while, but at the time of the interview she worked half-time. She participated in an exercise training group for people with heart disease twice a week. She explained that to work half-time made her feel well since she still had energy to socialize with family and friends, and to play with her grand-children. Marcus had a Bachelor Degree of Science in Social Work and at the time of the interview he worked as a team manager. When Marcus’s heart failure was discovered, about five years before the interview, he had felt unwell for about one year. He was diagnosed with dilated cardiomyopathy with a poor prognosis. He had been hospitalized for two months in intensive care. Marcus had been offered to participate in an exercise training group for older people with heart failure even though he was much younger. He used to be on half-time sick leave but at the time for the interview he worked full-time with full rehabilitation compensation. Erik worked as a broadband technician and spent a lot of time in his car. He sought healthcare because of shortness of breath and swelling of the body. About two months prior to the interview, he was diagnosed with heart failure. Initially he was sick-listed full-time for a month. At the time of the interview he worked halftime, but he was sick and tired of work and the associated travels. He had talked to his employer about finishing work. The occupational health service had been informed.

received one-half sickness benefit. Two informants were unemployed. Data collection The second author, who is experienced in phenomenological research, conducted five interviews and the first author conducted one interview. All interviews were conducted in the informants’ homes. The interviews were conducted in Swedish; digitally recorded; and lasted for 45–90 min. The interviews were open and unstructured [19]. This meant all interviews started with the same opening question: ‘‘Could you please tell me about your condition?’’ Questions also arose spontaneously as new sub-areas needed to be explored. All the time there was an effort to direct the informants’ intentionality toward their lived experiences of being on sick leave due to heart failure. The informants were encouraged to talk about the phenomenon as openly and deeply as possible and to reflect upon meanings. During the interviews, the interviewer asked follow-up questions, such as: ‘‘How do you mean?’’ or ‘‘Could you tell me more about that?’’ and so on. The interviews, thus, contained descriptions of the informants’ lived experiences of being on sick-leave due to heart failure. No interview guide was used. Data analysis Openness and sensitivity is crucial when conducting analysis from a reflective lifeworld research perspective. The analysis aims at describing an essential structure of a phenomenon and can be described as a movement between the whole – the parts – the

whole [19]. The interviews were transcribed verbatim by the first author. Next, both authors analysed all data. The interviews were read several times to get a sense of the whole. The reading was characterized by immediacy meaning to be close to the text and still allowing it to speak [19]. After understanding of the text as a whole is reached the researcher started to focus on parts of data. Each interview was divided into meaning units. As the analysis moved on it was possible to synthesize meanings that bound the different interviews together. After that, clusters of meanings were identified. The clusters can be described as patterns of meanings that help the researcher to see essential meanings and structures [19]. In order to bridle the evolving understanding, the clustered meanings were constantly discussed and reflected on. As a broader understanding of the text evolved the whole text was read again. When the present analysis revealed that the interviews did not have sufficient depth to reach an essence the meanings were structured in descriptive themes as suggested by Dahlberg et al. [19]. In studies using a reflective lifeworld research approach, the researchers’ pre-understanding can be an obstacle unless ‘‘bridled’’ [19]. ‘‘Bridling’’ means to question and reflect on the evolving understanding, while still keeping an objective and scientific attitude. Researchers’ self-awareness about their preunderstanding can be developed by confronting the pre-understanding and by discussions and reflections. The present authors have previously worked as registered nurses. In addition, the second author used to work in the field of cardiac care and has previously studied the life situation of people living with heart failure. However, the present research area - being on sick leave due to heart failure – was new to both authors, which facilitated openness and sensitivity towards the phenomenon.

Sick-leave and heart failure

DOI: 10.3109/09638288.2014.974835

Ethical aspects Before the interviews, the informants had the opportunity to pose questions and they also signed an informed consent form. The project conforms to the principles outlined in the Declaration of Helsinki [20]. Ethical approval was obtained from the Uppsala Regional Ethical Review Board (dnr 2011/074).

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Results

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frailty. No one asked about them and employers and colleagues pretended that nothing had happened. Allan: . . . it was mostly me who stayed in contact [with the employer] even though I was ill//They did not call very often// He [the employer] had a lot of excuses, he didn’t want to disturb//I think it’s strange//For the period of three weeks he called only once . . .

The analysis of the informants’ lived experiences of being on sick leave due to heart failure revealed a life situation characterized by anxiety, insecurity and uncertainty. As the informants perceived that rehabilitation professionals did not take on their professional responsibility they experienced that they were dismissed and abandoned. In addition, laws, rules and the sick leave system itself created frustration, strains and stress. Perceived absence of rehabilitation professionals’ responsibility meant the informants needed to find their own ways to handle their sick leave/rehabilitation process. Accordingly, the sick leave/rehabilitation processes ended up being the informants’ own responsibility. However, encounters with rehabilitation professionals could provide safety and support when rehabilitation professionals were perceived as taking on professional responsibility. The experiences of being sick-listed due to heart failure are further clarified by three descriptive themes: being abandoned; lack of participation; relations to other people.

Subsequently, while being on sick leave the informants experienced their employers or colleagues as abandoning them.

Being abandoned

Perceived problems getting in touch with physicians were experienced as demanding and overwhelming. In addition, the informants experienced that sickness certificates frequently expired without them being informed about what would follow.

The informants perceived that rehabilitation professionals cautiously escaped their responsibilities for the sick leave/rehabilitation process implying responsibility was handed over to the informants themselves. To the informants this abandonment implied anxiety, insecurity and uncertainty, which further complicated a life situation that was already perceived as unpredictable. Milan: I don’t know if I am to call him to get sick-listed or if I am to call the other physician who referred me to the hospital, I have no idea so to speak//It is actually worse than being sick// it’s like. . . you don’t know anything about what will come. . . or what’s going to happen . . . When they experienced they were abandoned they also experienced frustration and annoyance. Allan: As I didn’t hear from anyone I went back to full-time. Then she [the physician] called one day before Christmas Eve . . . And hell, I was annoyed//She said ‘I will issue a sick leave certificate as from the sixteenth’ I said ‘Why would you? It’s too late, I’m already back on full-time’ ‘Why?’ she said. Me: ‘Well, you wouldn’t let me get in contact with you . . .’ The informants also perceived that being on sick leave meant experiencing a social system with a complex legislation, which was difficult to understand or apply.

Lack of participation The informants perceived they lacked information and participation in their sick leave/rehabilitation process implying insecurity, anxiety and uncertainty. In order to get sickness certificates reassessed, extended or evaluated, the informants had to call or contact the physician themselves. At times they experienced that physicians issued sickness certificates without actually meeting them. In other cases they perceived physicians as absent or very busy while encountering them. This meant the informants’ trust in physicians was reduced. Erik: I would like to have more contact with the physician (Interviewer: Mm . . .) I cannot get any trust so to speak as they cruise in to the room with their telephone by their ear . . . I don‘t even remember what we talked about, it was too messy

Erik: when I was on sick leave I called and I chased him to ask whether it was possible to become sick-listed and I kept doing it for two weeks before it expired//I definitely called five or six times just to make . . . an appointment . . . The informants explained that this meant that they did not have a genuine possibility to participate in the process or influence the outcome. In addition, they were forced to take on responsibilities which were experienced as burdensome. Relations to other people Despite the lack of responsibility and participation the informants believed there were also rehabilitation professionals and other persons who were supportive. When responsibility was taken by rehabilitation professionals with knowledge and acquired competence it created hope, trust and calmness. Marcus: My employer would call me every Friday evening and they were fun, enjoyable and friendly conversations// it started out as a rehabilitation plan, however as we also shared personal matters it turned out to be something more

Michael: One could wish for more help from the PES since it is hard to find a job//I don’t know, I think it’s a failure. One is to be so damn capable and do things by yourself//you search for a job and ring contacts and hey and ho!

When the informants encountered engaged persons who invited them to participate or showed genuine sympathy or true empathy, it was experienced as supportive. Some rehabilitation professionals were even perceived to propose fellowship or built on an alliance which the informants experienced as they fought for them and stood by their side.

Furthermore, the informants perceived that employers did not keep in contact or did not have an understanding of the adjustments required at work due to the informants’ physical

Ingrid: She [the physician] decided ‘Now I’m going to stand by your side regarding this’// And I knew it was us against the SIA . . . ‘I am on your side’ so to speak . . .

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Such rehabilitation professionals were perceived as supportive. Family and relatives could also be perceived as supportive by taking responsibility, standing by the side or fighting for the informant. Then again, the informants struggled to maintain their selfimage both to themselves and in relation to other people. They described, for instance, that they were forced to play a game or to hide behind a mask or a role. One informant had problems concerning his professional role as a manager. Marcus: ‘‘They [the employees] would probably consider me weak//I don’t want to share it with them// if they have a castrated boss, well, I think we’re better off avoiding it . . .’’. Hence, the informant had to struggle to maintain his self-image as well as his employees’ picture of him as a manager. In addition, the informants at times perceived they did not fit in at work or in relationships with other people implying social isolation.

Discussion The present study aimed at exploring the lived experience of being on sick leave due to heart failure. The findings illustrate that being on sick leave due to heart failure means to be left on one’s own in order to take responsibility for an unfamiliar situation, i.e. the sick leave/rehabilitation process. From a caring science perspective health can be experienced despite illness [21]. Health, thus, is not synonymous with absence of disease. Instead health is an unique and integral part of human life [21] created in people’s constant interactions with other people and with the world. In addition, health is not measurable, but rather a state of inner balance [22]. In turn, illness has deeper dimensions than pure biology and is more than diagnosis, symptoms and signs. Also, experiences of illness are profoundly individual and personal. In addition, the altered body in chronic medical conditions implies an altered access to human relationships which changes the lifeworld [23]. When a person’s life course is interrupted by an unpredictable and most often incomprehensible condition, such as heart failure the world is shaken signifying a struggle to balance between health and illness and to maintain self-identity. Under such circumstances to encounter rehabilitation professionals who avoid taking their professional responsibility and who do not allow participation in the sick leave/rehabilitation process means the everyday struggle becomes even more difficult to handle and relate to. The informants in the present study perceived they were abandoned by rehabilitation professionals and that rehabilitation professionals turned responsibilities over to the informants without hesitation or consideration. This led the informants to feel frustrated and they sensed they were alone in their sick leave/ rehabilitation process, which forced them to depend on their own abilities throughout the process. This is in accordance with Hubertsson et al. [24], who described that sick-listed people can perceive their interactions with rehabilitation professionals as fragmented, which will impede their possibilities to take active responsibility for their own rehabilitation process. In a Swedish Government Official Report [14], it is stated that everybody have their own responsibility for their sick leave/rehabilitation process but that the way to find the best solutions can be both curved and long. The more curves and the longer the way the more sick-listed people will need help and support from rehabilitation professionals [14]. According to Tho´rarinsdo´ttir and Kristja´nsson [15], patients’ participation can be constrained if patients are forced to take more responsibilities than they desire and if participation means the patients have to struggle for their involvement. In light of this, it can be assumed that to be abandoned and to experience lack of participation for the informants, in the present study, meant they did not have a genuine possibility to take control, own

Disabil Rehabil, 2015; 37(19): 1732–1738

their sick leave/rehabilitation process or influence the outcome. One possible explanation is that the prevalence of heart failure in the younger population is rather low. Moreover, rehabilitation for people with heart failure tend to focus on medical matters, selfcare or on older people, implying that younger patients’ need for vocational rehabilitation that can be unintentionally overseen or neglected by rehabilitation professionals. In addition, there seemed to be a lack of co-ordination and collaboration between healthcare professionals and social insurance officers. This means that the rehabilitation professionals can place the responsibility for the patients/clients on somebody else. As a consequence, the patients/clients feel abandoned. Living with heart failure means a struggle to stay the person one used to be and still are [5,6,25–27]. For many people at working age, employment is an integral part of life which also affects their self-image and identity [5,6,16,28,29]. The informants in the present study described that at times they felt they had to play a game or hide behind a mask. One informant expressed serious concerns in relation to his employees illustrating how he struggled to maintain his identity in front of other people. This corresponds to the findings of Wells et al. [8] who described that the patients struggle to reconstruct their former selves. An inner conflict can arise in a person who can no longer work due to illness [30]. The conflict is a consequence of tensions between the person’s need to work and the body’s need of not working [7,30]. As self-esteem is reduced, it becomes difficult to handle and relate to the life situation [6,16]. Not to be able to live as before or to maintain one’s identity means existential uncertainty [5,16]. Thus, if people living with heart failure are not able to work it also means they lose their identity and independency [5,7,10]. Since the life situation when living with heart failure is both complicated and problematic the patients’ need for support is immense. However, the informants in the present study did not have many sources of support but they described that engaged people who believed in them and stood by their side were perceived as supportive. According to Tho´rarinsdo´ttir and Kristjansson [15], the first phase of person-centered participation includes development of a human connection between professionals and patients. Applied to the sick leave/rehabilitation process of people with heart failure, this can be understood as a connection between the sick-listed persons and rehabilitation professionals. The human-connection phase involves an inviting atmosphere, respect, to be seen and heard and to be recognized as an equal human being [15]. In the present study, the informants described that when rehabilitation professionals invited them to participate, or when other people proposed fellowship or stood by their side this was perceived as supportive. One possible explanation is that rehabilitation professionals who see the unique individual behind the diagnosis as well as have insights into the specific challenges relating to heart failure have the ability to be supportive. Heart failure is not possible to cure (unless by heart transplant) and it has a highly unpredictable course meaning stable good periods are suddenly interrupted by severe exacerbations. These characteristics can complicate activities, such as setting up and planning rehabilitation. There are many rehabilitation programs for people with heart diseases. However, these programs mostly concern people with coronary artery diseases (angina pectoris or myocardial infarction). In a recent registry-based study about sick leave in Sweden [31], it was found that people with heart failure are sick listed for an average of 124 days (median), compared with 61 days for people with angina pectoris (ICD code I20) and 47 days for acute myocardial infarction (ICD code I21), which clearly elucidates the differences between the conditions. It is also interesting to note that the relative return to work-rates for people with heart failure were significantly lower than for people with coronary artery

Sick-leave and heart failure

DOI: 10.3109/09638288.2014.974835

disease [31]. So even if the conditions belong to the same group of diagnosis (i.e. ICD code IX 100-99, diseases of the circulatory system), it is unreasonable to see heart failure and coronary artery disease as equal when designing and implementing rehabilitation programs. Instead, such programs need to be based on the condition-specific challenges on patients, workplaces and employers. However, more research is needed about how vocational rehabilitation for people with heart failure works. There is also a need for further research about people with heart failure and their encounters with rehabilitation professionals. Moreover, there is a need for interventional studies, which consider the complex interplay between factors implied by heart failure.

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Practical implications To secure patients’ needs of safety, continuity and security, collaboration and coordination between rehabilitation professionals is crucial. Regarding people on sick leave due to heart failure there should be individual rehabilitation plans, which comprise planned and decisive measures. The aim of such plans is to coordinate rehabilitating measures for individual patients. A contact person, such as a case-manger or a rehabilitation co-ordinator could be assigned to the patients if necessary, or on the patients’ request. The tasks of such persons include coordination, information and being a contact between patients and authorities. The authors would like to suggest that rehabilitation professionals use the present results as a starting point for reflections and discussions about the needs of people on sick leave due to heart failure. Strengths and limitations The strength of the present study is that it relies on patients’ authentic narratives, i.e. the informants’ lived experiences of being on sick leave due to heart failure. The authors have strived to thoroughly reflect on and describe the informants’ experiences in a believable way. To enhance confirmability and reflect all informants’ voices, each informant was cited in the results. Moreover, to enhance transferability the authors of the present study strived to provide sufficient descriptive data for the reader to revaluate the applicability to other contexts [32]. Both authors conducted the analysis, i.e. read the interviews, identified meaning units and meaning constituents as well as structured the findings into themes in order to enhance credibility and confirmability. During the whole process, the authors reflected over and discussed possible interpretations and levels of abstraction thus striving to avoid biased decisions [32]. During analysis, it was discovered that it was not possible to reach an essence describing the phenomenon. Obviously, this can be considered a limitation; nevertheless, the results provide valuable knowledge since there are very few studies into this under-studied area. The present study had an explorative focus and even if it was not possible to describe a phenomenological essence the results in part illuminate some of the problems which people with heart failure experience in relation to their sick leave-/rehabilitation process. Having two different interviewers is a possible weakness [32]. However, the first author thoroughly read the transcriptions before conducting the last interview in order to get a sense of the interviews and to make the interviews as congruent as possible. The sample is also a matter of concern. Even though the sample was small there were differences concerning age, level of education, occupation, sick history and sick leave history, which imply that the informants had various experiences of being on sick leave due to heart failure. In total, six participants were included; and only one was a woman. Then again, the prevalence of heart failure among younger people (50 to 59 years old) has been

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estimated to 1.2% in men versus 0.5% in women [1]. As a consequence there were difficulties in recruiting women. Despite immense efforts, at the time, it was not possible to recruit more participants. Then again, the aim of qualitative studies is not to generalize the findings from a representative sample to a larger population but to gain deeper understanding of a certain phenomenon under study. The goal, thus, was not to describe ‘‘the most common’’ or ‘‘the average’’ experience but to identify various aspects of a phenomenon as experienced by the people who live with it.

Conclusions Successful sick leave/rehabilitation processes in heart failure need to be based on the individuals’ unique experiences of their lifesituation. Therefore, people with heart failure need to encounter rehabilitation professionals who take their share of the responsibility, who support them, allow participation and aid them so that they can take control and responsibility for their sick leave/ rehabilitation processes. The results of the present study prompt questions which can serve as a starting point for further research. First there is a question of why and how people with heart failure, or other severe chronic medical conditions, are abandoned by those who are set to help? Another question concerns the responsibility for chronically ill patients’ participation in issues concerning work, sick leave and rehabilitation processes. One further question is what makes some rehabilitation professionals more supportive than others? Obviously, these questions lead to the question of how people with heart failure manage and relate to their existential situation, that is, their lifeworld?

Declaration of interest This work was supported by the Swedish Social Insurance Agency (reference number 25728/2010).

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To be on sick-leave due to heart failure: a qualitative perspective.

The aim of the present study was to explore and describe meanings of being on sick leave due to heart failure...
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