Choosing a profession despite a heart defect

© Indianne Hansen

As children with congenital heart defects grow up, their parents may start to worry about their child’s career prospects. Like all parents, they want a good and meaningful working life for their child, and their child, like most adolescents, wants a job that they enjoy and find stimulating. Fortunately, there is no need to be overly worried because young adults with congenital heart defects can basically do whatever they want to do in life, with a few exceptions. There are still decisions to be made, however, so what are the important factors to consider when choosing a profession? And what can research tell us?

Choosing a career

“What should I be?” Its a question that most of us ask ourselves at some time, and often there is no easy answer. Usually we first think about this question in later adolescence, at a time when we are faced with important educational and career choices. It can be a difficult decision to make, and perhaps even harder for young people with congenital heart defects.

The opportunity to have a job or career greatly affects our quality of life and our financial and social status. Early studies have shown that young adults with congenital heart defects sometimes have difficulties thinking long term, since many of them worry and are uncertain about how they should feel about the future, or if they even have a future at all. However, most of them can look forward to a long life. They can become scientists, journalists, health-care workers, welders, drivers, mechanical engineers, computer engineers, electricians, or just about anything else. But they should think about their options carefully and plan long term. They should also consider the opportunities that education can offer in terms of choosing a career. There is no right or wrong path and the decisions are very personal.

Counselling

Occupational counselling is resulting in more people remaining active in their careers. Thus, good advice about careers and education is very important. A 2005 British study showed that people who have received occupational counselling are far more likely to be in work than those who have not (73% vs. 46%). Good career counselling is perhaps the easiest way in which to get even more adults with congenital heart defects working. The counselling should be done at a centre for adults with congenital heart defects or somewhere where people with specialised expertise regarding congenital heart defects can offer advice. Individual interviews with both a cardiologist and career counsellor are recommended. Career counselling should address the importance of education and should chart the physical capabilities of the individual patient. This type of counselling is fairly undeveloped in many European countries and is not available at all in many countries worldwide.

Adjustment

How people with congenital heart defects function at work depends on many factors, just as for anyone else. It is not necessarily true that the more serious the heart defect the more practical challenges that person will encounter in their working life. It is all about being able to adapt to needs and to focus on the resources of the particular individual. A study from the Netherlands has shown that roughly half of the participants who had a complicated heart defect had had disease-related problems in their careers, whereas less than 1% of those with simple heart defects had experienced such problems. 50% of these people felt that their heart defect had restricted their career choices, whereas roughly 15% had been excluded from a job or had to give up a job because of their condition. Furthermore, many had lost their job after a medical examination, and some felt that their heart defect had hindered their career advancement. The main reasons for leaving employment were that they were physically unsuited to the job, burnt out, or suffered with emotional problems. Many wanted to see simple adaptations that would take their heart defects into account – i.e. more flexible hours, less time pressure, the opportunity to work from home and other such measures that would offer greater freedom to organise their work independently. Many people with healthy hearts probably desire the very same things.

Need for information

Unfortunately, most adolescents know little about their own heart defects. They need to be informed about what their heart defect consists of and the consequences that it might or might not have, not only in terms of choosing a career but also for life in general. One must neither exaggerate the challenges associated with simple defects nor underestimate the problems that can arise in complicated cases.

Many people are reluctant to tell employers about their congenital heart defects, and why should they? It is not always relevant, and the way in which the question is asked can easily feel like discrimination. In some countries it is even illegal for employers to ask health-related questions during a job interview. However, it is important for young people and adults with congenital heart defects to be able to tell an employer or anyone else about one's condition, should it be necessary to do so. It is up to the individual to determine just how much to say.

Some British researchers have suggested that knowing that you need life-long monitoring can be inhibiting, which is why some people refrain from applying for jobs. Importantly, provision of information can hopefully dispel such notions.

Education

© Oscar H. Riberg

The effect of education

Both education in general and higher education in particular are well known to have a greater role in determining whether people with functional impairments will enter the working world than is the case for the population as a whole. Studies of people with congenital heart defects have shown that participation in the working world increases with more education, although this is true of everyone, irrespective of their health status. In some studies, individuals with more serious heart defects have less education than those with simpler heart defects. This finding could be due to the fact that their heart defects have a greater effect on their daily lives; however, the average age of the study group was low, and thus many might not have yet reached school age. Read more about this topic in the Corience pages about kindergarten and elementary school.

More than average

Some countries monitor statistics for congenital heart defects and education levels, although no comprehensive data are available. Some studies from Germany, Sweden, Finland and the UK, for example, show that the education levels are similar to, and often above, the average level for the population. Read more about some of these statistics in the recent research section. Interestingly, several studies have shown that people with aortic defects seem to be the most highly educated. Other defects that score highly include pulmonary stenosis and ventricular septal defects. However, few studies have investigated each heart defect separately, and we should not put too much into this or make any general statements about the links between heart defect types and education level.

Motivation

Whether an adolescent manages to complete career training or complete an academic course naturally depends on what that individual has been through earlier in life. Genetics, syndromes, the consequences of treatment, and the heart defect itself can all impose restrictions in terms of the educational choices that are made. This tenet is particularly true for people with very serious heart defects. Adults with congenital heart defects are motivated to find suitable employment that is consistent with their level of education. The key is to maintain that motivation when they encounter any challenges, such as being advised not to choose the career that they want, difficulties in obtaining insurance, the need for surgery, or an inability to continue working full-time. The options in terms of choosing different types of work can also be expanded substantially through systematic testing of the stresses associated with different careers, job training, and rehabilitation. The report Management of Grown-up Congenital Heart Disease, a European standard prepared by cardiologists, also recommends that physicians and other health-care professionals have direct contact with the patient's prospective employer so that they can provide adequate information.

Working life

© Indianne Hansen

Employment

The proportion of the population who are in employment differs from country to country, and changes over time. Figures vary, but usually 70-85% of the population has a job. Participation in working life is likely to be correlated with both unemployment and welfare systems in individual countries. Countries that have good welfare schemes presumably have more people who receive benefits and other support in addition to, or instead of, being gainfully employed.

At present, few countries keep complete data for the number of people with congenital heart defects who are participating in working life, although there are some exceptions: studies from the Netherlands, Germany, the UK, Finland, and the USA suggests that 57-77% of all adults with moderate or complicated congenital heart defects are working. Adults with complicated congenital heart defects continue to work to a lesser degree than those with simple defects. However, the treatment for such children has improved greatly in recent decades, so that an increasing number of children with complicated diagnoses are growing up, becoming adults, and entering the working world.

Unemployment

The financial consequences of being unemployed differ between countries. Unemployment does have other negative effects, such as lowered self-esteem and reduced social contact, even in the most favourable welfare systems. 
We know little about unemployment in adults with congenital heart defects. Some studies have shown that the situation for such people is about the same as for the rest of the population, irrespective of diagnosis or health status. However, in a 2005 study from England, the rate of unemployment for participants with heart defects was greater than for the population otherwise. This finding shows that adults with congenital heart defects can find getting work or keeping a job over time difficult. Adults who had been terminated from employment took a long time to find a new job, and many had been unemployed for more than a year. These figures could correlate with a lack of career counselling.

Part time versus full time

Not surprisingly, the few data that are available show that women with congenital heart defects are not as active in working life as men are. This finding is consistent with the figures for the population as a whole. However, both male and female adults with congenital heart defects work part-time more often than do those who are healthy.

Being occupationally active does not just mean working a full day every day. For example, in a Dutch study, having a job was defined as being gainfully employed for more than 12 hours a week. Not everyone is healthy enough to work full-time. A balance has to be made between work and leisure time, and a person should feel in control of both. But it always pays to work, both financially and socially. Participating in working life also confers status, which is something that is probably more important than we like to admit. Research shows that people who work generally have a higher quality of life than others (see section on quality of life).

Many new questions

All studies investigating work and education for people with congenital heart defects have excluded those who have major learning disabilities or impaired mental development. How many people does this group consist of?

We have to assume that when people with congenital heart defects choose not to work, they do so because of their heart defects. But what if such choices are attributable to other factors, and what might those factors be?

We do not have enough knowledge about the working life of adults with congenital heart defects. What promotion opportunities are available for them, and what are their prospects in terms of securing a good pension?

A new generation of children with even more serious heart defects, such as hypoplastic left heart syndrome, is now on the path to adulthood. How will they be able to contribute to the working world? What problems will they encounter, and how will we deal with them?

There is much that we do not yet know enough about in terms of the education and the working lives of adults with congenital heart defects, partly because this population is fairly new and just as differentiated as any other, and partly because of a lack of research. It will be exciting to follow the developments!