[Home care services and the role of "caregivers"].Minerva Pediatr. 2001 Jun; 53(3):161-9.MP
The care of children and adolescents with cancer continues to grow in complexity. While in most cases we are winning the fight, now quality of life (QoL) is becoming a problem to face and a challenge. Pediatric total care policy includes also home care to deliver in any stage of the disease. This can become very useful in the terminal stage, when QoL is the primary goal. The WHO has defined palliative care as integrating the psychologic and spiritual aspects of patient care; affirming life, and regarding dying as a normal process; neither hastening nor postponing death, offering a support system to help patients live as actively as possible until death; and offering a support system to help the family cope during the patient's illness and their own bereavement&. Recently this aim is considered also for children. The home care team is usually composed by a physician responsible, few physicians, several nurses, social workers, psychologists plus the family/home caregiver. In most countries health professionals now rely on family/home caregivers, who can play an important role in the team. The American College of Physicians has recently edited useful Guidelines. The Penn State Milton S. Hershey Medical Center suggests four key ideas which make the word COPE in order to succeed in solving problems: C for Creativity, O for Optimism, P for Planning, E for Expert information. Not everywhere in Europe home care is included as a part of the Health Care System, even if there are increasing pressures from shrinking budgets. As hospitals can be upsetting for the child, is hospital care always necessary during the long course of the disease? Home care, when feasible, can be an alternative approach. Strong motivations support pediatric home care. The life rhythms are better preserved if the whole family is at home. Parents must be taught how to cope and how to talk with their children, the sick one and his/her siblings. The dialogue is easier at home. Home care respects the needs of siblings. Adjustment to living is easier at home, taking into consideration the active help of relatives and close friends. Children need stability and honesty. Pain is a source of great distress for children. When possible pain control must be obtained or at least tried at home. The child may find a better comfort when in his own bedroom and, if he feels better, he can play at home. When the child is dying the treatment is focused for a good QoL and no more on cure: children can feel the change. The difference is impressive if the child is followed at home and not only in hospital. Volunteer Groups can help the child's family better at home then in hospital. Also in Italy Scientific Pediatric Societies, health care professionals together with Parents' Associations could push politicians and implement the integration of several types of services for treatment of children, including home care, offering their collaboration in the global therapy design.