Massimo L M, Caprino D, Zarri D R
Department of Pediatric Hematology and Oncology, G. Gaslini Children's Hospital, Genova, Italy.
Minerva Pediatr. 2005 Dec;57(6):441-6.
Mutual help relationships are very important among families with children affected by serious diseases. Discussing common problems and experiences can provide the stimulus for developing the coping strategies that are needed to face new situations. This can thus be done with an outlook that nurtures subsequent adjustment and restoration of a good quality of life after diagnosis and the start of therapy. However, when parents are faced with the ordeal of a child affected by a high risk disease, this interaction may have detrimental effects. Through our observations of the behavior and relationships of 217 families over 5 years, we have been able to identify the caregiver as the staff member who can provide true and helpful support to the children and their parents. This caregiver is in touch with the psychologist supervisor on a daily basis, as well as with all the staff members involved in the global care of the child, including physicians, nurses, school teachers, and play workers. We strongly believe that physicians and caregivers must adopt strategies and practices to improve communication with, and often among, the families of affected children, and that they must act as a reliable source of support for their hopes for a cure. Treatment and recovery must never be proposed as a war to be won, but rather as an alliance among patients, parents, physicians and other caregivers that is formed to build health, and not merely to destroy the disease.
在有患重病孩子的家庭中，互助关系非常重要。讨论常见问题和经历可以激发应对新情况所需的应对策略的形成。这样做可以带着一种有助于后续适应以及在诊断和开始治疗后恢复良好生活质量的观念。然而，当父母面临孩子患有高危疾病的折磨时，这种互动可能会产生有害影响。通过我们在5年时间里对217个家庭的行为和关系进行观察，我们得以确定护理人员是能够为孩子及其父母提供真实且有益支持的工作人员。这位护理人员每天都与心理医生主管保持联系，也与参与孩子全面护理的所有工作人员保持联系，包括医生、护士、学校教师和儿童活动工作者。我们坚信医生和护理人员必须采取策略和做法，以改善与受影响孩子的家庭之间以及家庭内部的沟通，而且他们必须成为这些家庭治愈希望的可靠支持来源。治疗和康复绝不应被视为一场要打赢的战争，而应是患者、父母、医生和其他护理人员为了增进健康而结成的联盟，而不仅仅是为了战胜疾病。
