The aims of Family Oriented Rehabilitation (FOR) in Germany

Aims of rehabilitation for the parents

• Stabilise the couple’s relationship and reduce psychological disturbances and fears.
• Reduce behaviour disorders resulting from stress, such as eating and motoric problems, as well as excessive nicotine or alcohol consumption.
• Raise the family’s level of health awareness, for example, by reducing tension and the concentration deficits that result from too little relaxation and free time.

A study conducted in Sweden by Lawoko and Soares (2002) found that parents of children with congenital heart disease bear a particular burden: they suffer significantly more often from depression, fears and psychosomatic disturbances than parents of healthy children.

Aims of FOR for the child with heart disease

The young patients are encouraged to continue their outpatient treatment. They also learn how to deal with physical boundaries, for example, by recognising and responding to their own limitations. Suitable training programmes are used to increase the child’s motor skills and endurance, especially the coordination of body movements. If possible, the children are encouraged to participate in a local sport group for children with heart disease, where they can continue to do sports with other affected peers under medical supervision (see Sports article). Together with their counsellors the children also work on mental stabilisation and growth optimisation in the following areas:

• Motor skills
• Learning and achievement motivation
• Awareness and concentration
• Self esteem
• Anxiety
• Social skills
• The ability to cope with challenging situations

Aims of FOR for siblings

Siblings frequently feel overshadowed by the situation; often they exist in the shadow of the sick child and receive less attention from others. Apart from that there is also the shadow cast by the disease, which can darken the entire family atmosphere. As a result, siblings sometimes exhibit challenging behaviour (for example, wet the bed, soil their pants, are aggressive). This type of behaviour can be diagnosed and treated in the FOR.

Siblings or other family members that feel isolated because of the illness can be given the support they need to stabilise the family system. By addressing the family relationships they leave FOR as empowered and competent personalities.

Which professions must be involved for the success of the treatment?

• Paediatricians with qualifications in cardiology
• General practitioners/orthopaedic doctors, as consultants if required
• Clinical psychologists/psychotherapists, also neuropsychologists
• Social education and social workers
• Paediatric nurses
• Physiotherapists
• Sport therapists or comparable professionals
• Medical bath attendants and masseurs
• Occupational therapists
• Special educators, art therapists and comparable professionals
• Qualified educators / youth care workers
• Dieticians
• Teaching staff (ideally associated to the hospital teaching institution)

Scientific assessment of the FOR

In a clinical optimisation study carried out by Kanth (2001) in Bad Oexen, interviews were conducted with a total of 116 families (111 mothers, 19 fathers, all patients and siblings). This showed that following FOR there were highly significant improvements in the quality of the lives of parents and the child patients in cognitive and emotional areas, as well as physically.

Another assessment of a German rehab clinic carried out in 2001 – 2004 by West showed significant correlations between the complaints suffered by siblings there with those found in clinical and epidemiological studies carried out in England. During the course of FOR the high number of children with emotional or behavioural disorders decreased by a statistically significant 50% for child patients, and for siblings by ‘only’ 26%.

A high percentage of fathers in particular suffered physical symptoms such as nausea, breathing difficulties or hot flushes. The complaints decreased significantly during the course of rehabilitation. A great number of family members complained of motor tension, dejection and bouts of depression. This correlated with the results of research carried out in the Netherlands by Utens (2000), which had also found a high degree of emotional disturbance. According to West, the positive effects were still apparent six months after FOR. Symptoms of depression and anxiety were far less than at the beginning of rehab. The equilibrium within the family as seen by the mothers was still a lot better six months after FOR. The fathers thought that the positive effects did not last quite as long.

Epidemiological data and facts:

Every year about 1% of children are born with a congenital heart defect. In Germany this is between 6,000 and 8,000 children, 4,500 of whom require open-heart surgery.