The number of patients with congenital heart disease (CHD) who reach adulthood has grown extensively over the last decades. Due to the great development in techniques, CHD has more and more become a chronic disease [1
]. Aspects such as education and work therefore become increasingly important and are sometimes even more important contributors to quality of life than health status itself [3
Socio-economic outcomes among adults with chronic diseases are far from optimal, with unemployment rates nearly twice as high as among healthy individuals [3
]. Several studies have identified factors contributing to maintaining work among different kinds of chronic diseases such as rheumatoid arthritis, asthma and ischaemic heart disease [3
]. Previous studies have shown that most patients with CHD are able to work, although higher rates of unemployment are seen in most observational studies compared with the general population, especially among severe CHD [6
]. Physical problems are often reported as a reason [11
]. A recent study from our group showed that patients with (even mild) CHD, especially patients under the age of 40 years, were more often unemployed, worked less hours and had lower incomes than their healthy peers [8
]. Although socio-economic outcomes in CHD need to improve, specific information on the experiences and needs of employees with CHD at work is lacking. Therefore, this study aims at exploring barriers and facilitating factors adults with CHD experience at work. This will help us gain better understanding and suggest possible strategies on how to intervene.
Qualitative research was conducted to explore experiences at work among young adult patients with CHD through semi-structured in-depth face-to-face interviews [12
]. The study followed the ethical recommendations of the Declaration of Helsinki [13
]. COREQ criteria were used as the fundament for reporting the data [14
Instruments and procedures
The structure of our self-developed interview was based on a model we constructed from several existing models, based on a theoretical framework (Table 1
). This framework consisted of a combination of the classical ‘Workload - work capacity model’ [15
], the ‘Effort and recuperation model’ [16
], the ‘Structure of the psychosocial work environment model’ of the QEEW (Questionnaire Experience and Evaluation of Work) [17
] and information from qualitative studies in other patient populations . Barriers that were described in the literature were mostly on physical job demands, low social support and fatigue [5
]. We added specific items for patients with CHD that are known from the literature, such as the feeling of being different, revealing or hiding the CHD and coping with the disease and the healthcare system [18
The interviews consisted of questions on demographic items, including information about education and the contents of the patient’s current work, working times, type of contract and job choice. Besides this, experienced barriers as well as facilitating factors at work in relation to the CHD were the main subject of the interview. During the interview, participants were encouraged to speak openly to gain more in-depth information. To improve reliability, the interviewer recapitulated important parts of the answers given during the interview for member checking. A pilot interview was performed to pre-test the usability of the interview with feedback from an experienced interviewer. The interviewer (SdM) had no relations with the selected patients and was not directly involved in their care.
Patients were screened between February and April 2012 through information in their medical files. All patients were treated in one large outpatient cardiology clinic from a tertiary referral centre in the Netherlands. Patients were eligible if they had known CHD, they were in paid work or had been in paid work in the past 6 months (following the definition of Statistics Netherlands), had a full understanding of the Dutch language and were aged between 20 and 35 years. Patients with mental retardation or severe comorbidity were excluded. Heterogeneity in CHD severity, age, gender, jobs and clinical classification according to the New York Heart Association (NYHA) was intended. CHD severity was based on a consensus-based classification scheme [20
An information letter was sent to selected patients in advance. Patients were approached to participate after their regular appointment at the outpatients clinic. Informed consent was obtained verbally. All interviews were held in Dutch (the native language for both interviewer and interviewees) and were audio-taped. The interviews lasted between 18 and 56 min (mean duration 34 min). All interviews but one were held in a private room of the outpatient clinic. One interview was, on request, held at the participant’s home. In five interviews a partner or parent of the participant was present and able to contribute to the interview. All supported the patient’s opinions.
All interviews were transcribed verbatim and analysed with the directed content analysis approach by two researchers (SdM and MS) [21
]. This analysis approach consists of identifying meaningful text fragments, selective open coding and interpretation. Our own model was used as a frame for coding the data (Table 1
). After coding, analyses were compared and differences were discussed until consensus was reached. To increase reliability of the analysis, three interviews were read and open coded by a third researcher (JS). Data saturation was checked during the process and reached after participant 14. Negative case analyses consisted of discussion within the research team. Illustrative quotations were selected from different interviews by the research team. MAXqda 10 software [Kuckarts, Udo. Berlin, Germany] was used for analysis.
This is the first study that has identified both barriers and facilitating factors at work among young adults with CHD. Important facilitating factors were good relationships with colleagues and having enough recovery possibilities. Barriers were mainly caused by physical aspects and too little opportunity for recovery.
Work is important in the daily lives of young adults with CHD, and it is influenced by their CHD. CHD affects job choices and work in many ways: from adjustments that have already been made to prevent possible future problems to having been forced to change jobs due to their illness. Even though some of the relatively young adults with CHD experienced no or few problems at work, the disease influenced job choice in several patients and a substantial number of them worked below their educational levels. Considering that average educational levels among people with CHD are already a little below the general population [8
], this is a serious issue that can lead to loss of talent and labour forces.
Factors that are described by this population of young adults with CHD are partly in accordance with what is seen by other patients with chronic diseases [22
], although their weight seems somewhat different. A lot of barriers that were found among employees with CHD can be summarised to be caused by physical aspects and recovery capabilities and opportunities. Fatigue, decreased concentration and exertional dyspnoea were mentioned most. In this population, specific pathways could play a role. A lot of late complications of CHD present with fatigue [23
]. This may also be influenced by the use of certain medications. Furthermore, patients with CHD are at increased risk for neurological, psychological and cognitive damage through many pathophysiological ways, especially those with severe or cyanotic defects [24
]. Whether this is due to brain damage or cognitive impairment by the treatment or the CHD itself or is caused by something else is as yet unknown. Especially among adults with CHD there is very little information about the relationship between possible neuro-cognitive damage and practical outcomes. However, this does not explain why several participants worked at a lower level than their educational level. Previous studies among healthy individuals have shown that the need for recovery during and after working time is a major predictor of psychosomatic symptoms, sleep problems, and complaints of emotional exhaustion. This could lead to a vicious circle of more fatigue and physical problems, even potentially leading to sick leave.
Significant facilitating factors were mostly about good relationships with colleagues and employers and about having a sense of control: experiencing opportunities to adjust how and when the work was performed and to preserve an optimal work-private life balance. In the facilitating factors we might find the key to the solution: flexibility in work conditions and arrangements for breaks as well as positive relationships with colleagues and employers seem essential. Varekamp et al. have looked at workplace problems and solutions for people with different kinds of chronic diseases and found that working less hours, working at home, a slower work pace and more job autonomy were most desired solutions by patients with chronic diseases [25
]. Several studies also show that motivation, personal coping strategies and personality traits are important for work participation for employees with other chronic diseases [27
]. Showing interest or active support is highly appreciated and necessary: a lot of people with CHD who are considered to be asymptomatic report problems on health questionnaires [26
]. Previously reported experiences of young adults with CHD also pointed out that it is hard to strike a balance between being a patient or a ‘regular’ employee (being different or not) and that there is often some ambivalence about telling people about the CHD [19
]. This issue was also brought up by several participants in this study.
The results of this study can be used to tailor a specific (group) self-management intervention program to support CHD patients in their work [27
]. Previous studies on these kinds of intervention programs for other chronic diseases show a decrease in physical symptoms and fatigue and better coping strategies [28
]. Specific coaching for patients should try to increase self-confidence, assertiveness and the sense of job control and thereby consist of acquiring skills in how to deal with specific physical symptoms, to increase job autonomy, focus on job motivation and give insight into personal coping strategies and personality traits that could be of influence. Given our results, it should also emphasise the importance of good relationships with colleagues and employer. Considering certain CHD-specific aspects, for example telling colleagues and employer about the CHD and dealing with specific physical symptoms, a specialised intervention program for CHD patients could fit all of these needs. For employers and career advisors, helping patients with CHD should focus on reducing high physical job demands, especially for patients with more severe defects, and offering possibilities to arrange adaptations in the workplace and work hours when needed.
Although qualitative research is relatively uncommon and unknown within the field of clinical cardiology, we believe this is the best way to gain a better understanding of this subject. In the interpretation, however, since this is a qualitative study, we must realise that explanations for the higher rates of unemployment or work-related problems or direct solutions are not to be expected.
A shortcoming of the study is that, in hindsight, heterogeneity in patients functional class was not completely reached. Only patients with NYHA I and II were interviewed and this may have underestimated the barriers for work among patients with CHD and a lesser functional status. On the other hand, no patients with mild CHD were included. A limitation that may also have underestimated the barriers is that by the inclusion criteria of having a job, people with potentially the most or most severe barriers could have been excluded. A strong aspect of this study is that data were gathered through the use of a specific model. This theoretical model could, due to its basics, therefore include all relevant factors in one model. Because participants were able to talk openly and because the directed content analysis approach was used, no factors seem to be overlooked.