Rehabilitation and family oriented rehabilitation

Living with a child with a congenital heart defect (CoHD) places demands on the entire family: it requires frequent stays in hospital, constant visits to the doctor and a life-long commitment to taking specific medicine.

Siblings often feel overshadowed by the patient, which can lead to unusual behaviour at school and at home or a regression in their development, such as wetting the bed. The relationship between parents suffers from the strain and marriages can sometimes break up. Mothers often give up their careers so they can care for the ill child. This, together with frequent journeys to treatment centres or other appointments related to the illness, can cause financial hardship. It is clear that it is not just the patient who suffers, but the entire family. Yet favourable family conditions are especially important to the development of children with a heart defect.

In Germany, family oriented rehabilitation (FOR) plays an important role in strengthening affected families. FOR is an inpatient rehabilitation process that not only treats the child with the heart defect, but puts the entire family at the centre of all therapeutic interventions.

As support of this kind does not exist in any other European countries this article is intended to promote the development of this particular system of rehabilitation at an international level.

Families with heart children need extra support

The German health system is obliged to make savings wherever possible. Increasingly, this has led to unfavourable outcomes for the families of children suffering from heart disease, such as being forced to care for the child at home after surgery for weeks, sometimes months. These families need the support of in- and outpatient rehabilitation facilities during such difficult periods.

Young adults need appropriate programmes

The psychological development of young people with CoHD can often fall behind that of their peers. Or they may distance themselves from their families by, for example, refusing to follow medical advice or indulging in behaviour that compromises their health, such as smoking and drinking. Such behaviour is beyond the usual age-appropriate testing of boundaries, and can endanger what is otherwise a good prognosis and quality of life. Often the result is that parents become overprotective, yet this only creates a vicious circle that can hinder the young person’s development as an individual. It is sometimes not seen – even by the attending physicians – that the heart complaint has not ‘cleared up’ and that not all children and young people are free of complaints. Those physicians familiar with the specific problems of CoHD could help overcome these problems by counselling the young people and getting them to cooperate in establishing rules. Peer groups in special rehabilitation facilities provide the young adults with the support they need to break away from their families and deal self-dependently with the specific characteristics of their illness.

Germany: “Family oriented rehabilitation” (FOR) is unique in Europe

Germany currently has four FOR clinics for CoHD patients: Tannheim and Katharinenhöhe, in southern Germany (Black Forest), Bad Oexen in central Germany and Bernau near Berlin in eastern Germany. Instead of treating individual members of the family, FOR treats the entire family as the patient. In the event that outpatient treatment is not enough, the German national health system can also pay for inpatient rehabilitation, provided it is for medical reasons. FOR is appropriate when the family is no longer able to provide the medical treatment or support that the child or young adult requires. It is also suitable when the strain of the child’s illness causes physical or psychosocial malfunctioning among other members of the family (a common occurrence following treatment for life-threatening heart disease, multiple disabilities or multiple responsibilities).

Belgium: Inpatient care before and after heart surgery

Hospital outpatient departments are often overcrowded and waiting times are long. With the financial support of a foundation, a model was embarked on at the Department of Paediatric Cardiology in Gent which involved patients and their families being visited at home by a nurse and receiving guidance from a psychologist over several months. The chance for the families to discuss medical and care issues at a low level was as important as it was helpful.

Bulgaria: outpatient and inpatient rehab facilities

Massage and breathing and muscle-strengthening exercises are available to patients during their stay in hospital. After being discharged their convalescence continues in a rehabilitation centre, where they usually stay for up to two weeks, or at the cardiologist’s discretion. The parent association ‘Child’s Heart’ organises annual rehabilitation programmes for children with heart disease, where they are taught to take care of themselves without help from their parents.

Great Britain: no binding standards for CoHD children

In Great Britain there is no standardised rehabilitation programme for children and young adults with CoHD, like that available for adults following a heart attack (see British Heart Foundation). Paediatric cardiologists and liaison nurses refer children and young adults to social workers, physiotherapists, nutritionists and play therapists, who then treat the patients according to their needs.

Lithuania: sanatorium for different diseases

A number of rehabilitation centres in some of Lithuania’s larger cities provide services such as speech therapy, physiotherapy and kinesiology, depending on the medical indication. There are also special kindergartens for handicapped children suffering from serious illnesses, which provide excellent care, and sometimes even medical care. However, rehabilitation facilities in Lithuania are not sufficiently developed or specialised, especially in comparison to the facilities for adults. The Saulutė Sanatorium in Druskininkai provides limited facilities for CoHD children.

Netherlands: Revalidatiecentra

Following rehabilitation, adults recovering from heart attacks are treated by specially trained physiotherapists. The rehab centre to which a person with CoHD is referred depends on the attendant cardiologist and the individual case. The costs for in- or outpatient treatment are covered by insurance. Children with CoHD receive schooling during rehabilitation. The proportion of CoHD children is very low, as paediatric cardiologists have no norms with regard to possible indications. At Utrecht University Hospital, physiotherapists are currently investigating the physical limitations of CoHD children. Knowing the extent of the child’s ability to cope with strain is important for parents who feel left to their own devices, without medical guidance. With regard to sport, paediatric cardiologists usually advise parents to “see how much she/he can take”. Information on sport and CoHD can be found on the homepage of Patientenvereniging Aangeboren Hartafwijkingen (CoHD-patient association)

Northern Ireland: training programme for psychological stress factors CHIP (congenital heart disease intervention programme)

A study of families with children suffering from complex CoHD covered the following areas of support:

  • Families with infants and small children: medical training, nutrition and development counselling
  • Pre-school and school children: prevention, support and activities

Some mothers were too afraid to hold their newborn babies in their arms. This lack of stimulation and skin contact has a negative effect on the child’s development, for example, the central nervous system.

To understand why some families cope well and others don’t a programme (among other things) was devised on the basis of this information. CHIP did not improve motor skills but it had a positive effect on the mental, social and emotional development of the child. There was also a noticeable reduction in nutrition-related problems (see


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West C (2005). Evaluation des familienorientierten Behandlungskonzepts der Nachsorgeklinik Tannheim am Beispiel kardiologisch erkrankter und mukoviszidosekranker Kinder und ihrer Familien. Roderer, Regensburg.

Author(s): Hermine Nock
Last updated: 2010-03-17

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