Psychosocial Support.

Psychosocial support is an integral part of the total management of all patients. The responsibility for overall management must remain clearly with a single treating physician. To ensure the continuity of care, and given the close relationship that develops between doctor and patient, it is important that the treating physician remains the same, permanently or for as long as possible.

A multidisciplinary team treating and caring for the child or adolescent with cancer includes the treating physician working with consulting specialists, a psychiatrist and/or psychologist, nursing staff, a social worker, a teacher(s), a recreation specialist(s) and members of other health care disciplines (as the need arises). Training specifically on childhood cancer, or at least childhood cancer related experience, is recommended for all members of the team It is extremely important that all members of the treatment and care team reserve time and space for meeting with parents, patients, and family members.

Apart from the child/adolescent, families of affected children face an emotional crisis at the time of diagnosis. From that point on, the illness challenges the lives of all involved. It will change the relationship between the parents, the relationship among the siblings, and the whole balance of family life. The entire family (parents, patient, siblings, and extended family members) should be helped to understand the illness, each at this or her own level of development, and should be encouraged to accept the need for active treatment and prolonged follow-up. Parents should be helped to, where possible, behave towards the affected child in the same way as towards healthy siblings. The treatment process should allow for interaction among involved families, and stimulate active participation in specific support programmes. As much as possible, such support programmes should involve healthy children too (for e.g. the siblings), and in child/teenagers should be allowed and encouraged to continue to participate in activities with healthy peers/peer-groups. Parents – or a person caring for the child/teenager - should be encouraged to and have contact with other parents and/or parent support groups.

At their own level of development, young people with cancer should be helped to understand their illness and their response to the illness. They will need to accept the necessary and often intense treatment. They should be made aware of the acute treatment’s short-term consequences (such nausea and pain), and long-term effects , yet reassured that these can usually be effectively dealt with. They should be encouraged to look to the future with hope and optimism.

To this end, the children should, whenever possible and at their appropriate level of development, actively participate in programmes and other interaction processes aimed at promoting their participation in the decisions concerning their own health care. Medical, psychosocial and social interventions should support the patients’ educational and psychological growth, based on their individual strengths and weaknesses, as appropriate to the stage of their disease.

The integration, or re-integration, of the child/teenager into school is a critical part of the psychological and social recovery and development. The ultimate goal is the development of the child into a well-adapted adult, actively participating in life, including work and family life. Teachers should be sensitised to and informed about childhood cancer. With the permission of children/adolescent under care and their guardian/parent, the health care team should contact teachers and school, so that the children are integrated into normal school – during treatment (where possible) or as soon as possible after treatment. In order to promote independence, school staff should avoid giving special attention or privileges on the child, as well as imposing restrictions, except those which are medically indicated. While in the hospital, the child should be encouraged to keep up with schoolwork. If the child must remain at home for medical reasons, special efforts and attention should be made to help the child maintain school performance. Some schools are able for a child to participate in school through an online link. In many cases the use of a home teacher will be necessary and advisable.

To facilitate integration into society, all those involved in the care (medical psychological, or educational) of children/adolescents with cancer should (from the start) be considering how they will assist them in preparing for the best t possible level of employment. Rather than overly lowering expectations and fostering overprotection, which leads to continuous dependency, the young person and his/her care team should rather aim for the best vocational outcome. Advice should be made available regarding career preparation (including suitable studies) and employment opportunities. Close co-operation and communication with educational and employment establishments is important.

Policies, be they at the treatment hospital or facility, at the schools or educational entity, or other institution (such as church/place of worship), should be developed that maximize the integration of childhood cancer patients, survivors and their families . Care should be taken to discourage prejudice on the basis of diagnosis, and to ensure that judgments regarding career, employment and insurability be made on the basis of the current health status of each individual.

Not only should health authorities, treatment facilities, and support entities in society (such as non-profit organisations) strive to ensure the best possible medical treatment, it is also essential that the paediatric oncologist haematologist and the caring team ensure that appropriate psychosocial support services (including emotional and social support), from both professional services (psychologists and social workers), and informal support services (parent supporting parents, volunteer support and so on) are available for all of the children and adolescents under the care of a multidisciplinary team.