Overcoming Cancer with Research - Making Successes Public

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Family-oriented rehabilitation

Last update on: 12/01/2009

Medical and psychosocial rehabilitation of children and youths with cancer and their family members is of enormous importance.

The phase of intensive medical treatment leaves scars

During times of intensive and aggressive medical treatment, usually lasting 6 to 12 months, the daily routine of young patients and their families are defined by pain, tension, fear, isolation and the complete loss of the normality they are accustomed to. Young patients, their parents and their siblings are generally taken right to the thresholds of their personal limits.

 

Serious conflicts among siblings partners are no rarity

The young siblings of the ill child, also known temporarily as “shadow kids”, are all too often left on their own to face their fears and everyday life, even despite the extraordinary efforts put forth by parents and family members; additionally, they are also often seen as a source of support for their exhausted parents.

 

On the other hand, parents themselves are hit the hardest and have to provide foothold, safety and support for their severely ill child and his or her siblings in addition to conveying a positive attitude.

 

Psychosomatic damage and pathological clinical pictures are the potential outcome.

 

Family-oriented rehabilitation is the concept of choice

Scientific studies with internationally networked paediatric oncologists, such as the “Erice Statement“, confirm the importance of “holistic healing”, i.e. complete medical, psychological and social healing. This means: it’s an absolute must to stabilise and rebuild the family mentally and physically. The afflicted young need to be able to find their way back to their parents and siblings and experience normal family life again. Family-oriented rehabilitation is the concept of choice (Häberle et al.: Familienorientierte Betreuung bei krebskranken Kindern und Jugendlichen. Prax. Kinderpsych (46):406-419, 1997).

 

Austria needs a rehab centre for children and youths with cancer and their families.

 

Since there is no specific rehab centre for young cancer patients and their families, we, the paediatric oncologists who treat them in consultation with our psychosocial team, send the afflicted to Germany, generally to Katharinenhöhe or to Tannheim. However, this option is rarely used due to a lack of official cost coverage for family members. This also means that the family will be separated.

Univ.-Prof. Dr. Helmut Gadner

Medical Director at St. Anna Children’s Hospital,

Director of St. Anna Children’s Cancer Research Institute,

Coordinator of “Overcoming Cancer With Research”.

 

The objective:

• To create a facility for Austria
• Which provides each family with at least one stay for rehabilitation
• During or following the long, traumatising treatment process.

Meetings regarding financing with social security offices, the Association and other social institutions have unfortunately not resulted in any success to date, such that the parent initiatives for family members have to intervene to provide support.

 

And all this, despite a needs analysis conducted by ÖBIG (Austrian Healthcare Agency) on behalf of the umbrella organisation of Kinder-Krebs-Hilfe (Children’s-Cancer-Assistance) clearly confirming the meaningfulness of family-oriented rehabilitation in Austria.

 

Another general problem is presented by the complexity of the cost coverage regulation for rehabilitation in Austria. In the case of congenital diseases, financial support is provided by the Austrian states. In the case of acquired diseases, it is provided by national social security. Since there are various diseases which cannot clearly be attributed as being “congenital” or “acquired”, there have been significant delays. Leukaemia, for example, is caused due to a genetic defect – which has not been known for long – and is therefore assessed as being a congenital illness.

 

Rehabilitation measures in detail

The consequences of a child becoming ill with cancer vary greatly. For this reason, it is important to have rehabilitation measures which go beyond acute intensive medical treatment to include medical, physiotherapeutic, psychological and psychosocial aspects, such as:

 

• Physiotherapy
• Sport rehabilitation and physiotherapeutic programmes: in the case of reduction in physical capacity, e.g. as a result of long-term treatment
• Muscle training and conditioning
• Breathing therapy, e.g. in the case of lung dysfunctions
• Ergotherapy, e.g. in the case of fine motor skill dysfunction, e.g. after treating a brain tumour
• Psycho-therapeutic and psychosocial interventions, e.g. in the case of fear, depression, withdrawal, lack of concentration, aggression, suspicious behaviour in the family, e.g. as a measure for re-integration into peer groups, as a consultation measure for scholastic training and professional pursuits

 

The “actual healing” of young patients and their families therefore does not begin until after the acute medical treatment phase has been concluded.

 

Following intensive treatment at special children’s cancer centres, family-oriented rehabilitation has the declared goal of supporting and securing successful medical healing. The afflicted young and their families should be able to see and experience themselves as normal families and possibly also learn to accept and live with handicaps.

 

 

For (former) young cancer patients and young adults between 15 and 20 years of age, it is particularly important to focus on specialised medical-psychosocial rehabilitation in peer groups. During their illness, the afflicted young often completely lose their autonomy within the family. The experience of a life-threatening illness, physical handicap and the loss of previous references in life, such as school or training positions, are especially burdening in this important phase of personality formation.

 

Experienced-based learning (e.g. sport courses such as archery, inline skating, climbing) and psychosocial undertakings (e.g. going to a disco) are extremely important instruments in order

• To exchange experiences with others who have lived through something similar,
• To increase confidence in one’s own abilities and to build up the self-confidence of afflicted young persons and
• To make reintegration into peer groups easier.

 

Click here to see more details on the Nachsorgeklinik Tannheim (Tannheim Aftercare Clinic) in the Black Forest. They treat children and youths suffering from cancer, heart problems and cystic fibrosis as well as their families with individually tailored rehabilitation and prevention programmes.

 

Katharinenhöhe Schönwald is a family-oriented rehabilitation clinic for children and youths suffering from cancer and heart problems and their families.