Massimo L
Minerva Pediatr. 2001 Jun;53(3):161-9.
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.
癌症患儿及青少年的护理工作愈发复杂。尽管多数情况下我们在这场斗争中取得了胜利，但如今生活质量（QoL）正成为一个需要面对和应对的问题与挑战。儿科全面护理政策还包括在疾病的任何阶段提供居家护理。这在疾病末期可能会非常有用，此时生活质量是首要目标。世界卫生组织将姑息治疗定义为整合患者护理的心理和精神层面；肯定生命，并将死亡视为一个正常过程；既不加速也不推迟死亡，提供一个支持系统以帮助患者尽可能积极地生活直至死亡；并提供一个支持系统以帮助家庭在患者患病期间及亲人离世后应对。最近，这一目标也被应用于儿童。居家护理团队通常由一名责任医生、几名医生、若干护士、社会工作者、心理学家以及家庭/居家照顾者组成。在大多数国家，卫生专业人员现在依赖家庭/居家照顾者，他们在团队中可发挥重要作用。美国医师协会最近编辑了实用指南。宾夕法尼亚州立大学米尔顿·S·赫尔希医疗中心提出了四个关键理念，组成“COPE”一词，以便成功解决问题：C代表创造力（Creativity），O代表乐观主义（Optimism），P代表规划（Planning），E代表专业信息（Expert information）。在欧洲并非所有地方都将居家护理纳入医疗保健系统的一部分，即便面临预算缩减带来的越来越大的压力。由于医院环境可能会让孩子感到不安，在疾病的漫长病程中，住院护理是否始终必要呢？居家护理在可行的情况下可以是一种替代方法。有充分的动机支持儿科居家护理。如果全家都在家，生活节奏能得到更好的维持。必须教导父母如何应对以及如何与他们的孩子交流，包括患病的孩子及其兄弟姐妹。在家中交流更容易。居家护理尊重兄弟姐妹的需求。考虑到亲戚和密友的积极帮助，在家中更容易适应生活。孩子需要稳定和坦诚。疼痛是孩子极大的痛苦来源。只要有可能，必须在家中实现或至少尝试控制疼痛。孩子在自己的卧室里可能会感觉更舒适，如果感觉好些，他可以在家中玩耍。当孩子濒临死亡时，治疗的重点是提高生活质量而非治愈：孩子能感觉到这种变化。如果孩子在家中接受护理而不仅仅是在医院，差别会很明显。志愿者团体在家中能比在医院更好地帮助孩子的家庭。在意大利，科学儿科协会、医疗保健专业人员以及家长协会也可以推动政治家，并在全球治疗方案设计中提供合作，实现包括居家护理在内的多种儿童治疗服务的整合。
