Oppenheim D, Le Deley M C, Pein F, Hartmann O
Département de pédiatrie et unité de psychiatrie et psycho-oncologie, institut Gustave-Roussy, Villejuif, France.
Arch Pediatr. 2000 Aug;7(8):833-9. doi: 10.1016/s0929-693x(00)80192-x.
The aim of this study was to assess parental opinions on the advantages and disadvantages of a pediatric oncology day hospital (DH) so that the structure can be better adapted to the children's needs and parents' expectations, and provide a potentially valid alternative to conventional hospitalization (CH).
Over a 15-days period, 39 parents of children treated at a DH were approached and asked to fill in a questionnaire on their opinion of the advantages and disadvantages of a DH compared to a CH.
The results of this survey were significant. The majority of parents preferred the DH to the CH (69% versus 15%). The illness was perceived as being less severe; and as the child was not continually in the CH context, he/she was able to forget the illness and the hospital to some extent, and was therefore not as anxious. The DH appeared to be better adapted to the child's needs and facilitated the pursuit of normal family life and everyday activities, but imposed constraints on social and professional activities. On the other hand, the CH provided a reassuring treatment context including more comprehensive information, and in particular a better integration of the child and careful monitoring of the disease within the oncology department, and closer relations between the different parents visiting the hospital. In spite of the high preference rate for the DH, in some instances certain disadvantages could outweigh the advantages, e.g., fatigue due to journeys to and from the hospital, or living too far away from the DH; a lack of punctuality, which meant that the parents were unable to plan their day with any certainty; insufficient comfort (noise, a limited number of rooms available); inadequate information; a lack of privacy; and the anxiety connected with having to assume too much responsibility.
Overall, it was concluded that the parents appeared to appreciate the aims of the DH (i.e., limiting the treatment constraints imposed on the patient and on the parents themselves, thereby maintaining the quality of family life, assuring adequate treatment, reducing cost of treatment). However, the authors consider that the DH has to be organized in such a way that it takes into account the following: the social aspects, i.e., living conditions, parents' social, economic and professional status; parents' and children's psychological traits, expectations; and access to a local care system. The DH should also have sufficient means and staff at its disposal. Without taking these factors into consideration, the DH and other alternatives to the CH will not be able to adequately care for the patients, or meet the parents' expectations, and may even have a negative effect on the family.
本研究旨在评估家长对儿科肿瘤日间医院(DH)优缺点的看法,以便其结构能更好地适应儿童需求和家长期望,并提供一种可能有效的传统住院治疗(CH)替代方案。
在15天的时间里,研究人员与在日间医院接受治疗的39名儿童的家长进行了接触,并要求他们填写一份关于与传统住院治疗相比,日间医院优缺点看法的问卷。
本次调查结果意义重大。大多数家长更喜欢日间医院而非传统住院治疗(69%对15%)。家长认为孩子的病情没那么严重;而且由于孩子并非一直处于传统住院环境中,他/她在一定程度上能够忘记疾病和医院,因此没那么焦虑。日间医院似乎更能适应孩子的需求,便于维持正常的家庭生活和日常活动,但对社会和职业活动有一定限制。另一方面,传统住院治疗提供了一个令人安心的治疗环境,包括更全面的信息,特别是孩子能更好地融入肿瘤科,疾病能得到更仔细的监测,而且不同家长在医院的联系更紧密。尽管日间医院的偏好率很高,但在某些情况下,某些缺点可能超过优点,例如往返医院的疲劳,或者住得离日间医院太远;缺乏准时性,这意味着家长无法确切地安排自己的一天;舒适度不足(噪音、可用房间数量有限);信息不足;缺乏隐私;以及因不得不承担过多责任而产生的焦虑。
总体而言,得出的结论是家长似乎认可日间医院的目标(即限制对患者及其家长自身施加的治疗限制,从而维持家庭生活质量,确保充分治疗,降低治疗成本)。然而,作者认为日间医院的组织方式必须考虑以下因素:社会方面,即生活条件、家长的社会、经济和职业状况;家长和孩子的心理特征、期望;以及当地医疗系统的可及性。日间医院还应有足够的资源和人员可供调配。如果不考虑这些因素,日间医院及其他传统住院治疗替代方案将无法充分照顾患者,或满足家长期望,甚至可能对家庭产生负面影响。