Quint R D, Chesterman E, Crain L S, Winkleby M, Boyce W T
Division of General Pediatrics, University of California Medical Center, San Francisco.
Am J Dis Child. 1990 Nov;144(11):1238-41. doi: 10.1001/archpedi.1990.02150350070028.
The impact of providing home care for ventilator-dependent children was studied in a cross-sectional survey of 18 northern California families. Through the use of a confidential structured interview and the impact on Family Scale, we obtained information on family demographics; the childrens' medical conditions; financial, social, and personal impact on the family; and parental coping-mastery of the care of a ventilator-dependent child at home. Analysis of scores from the impact on Family Scale showed no differences in the perceived family impact between primary caretakers and their spouses. Primary caretakers in the sample, however, showed significantly reduced Coping subscale scores with a longer duration of home ventilatory care. This finding, if confirmed in future studies, has policy implications for physicians and other health professionals working with ventilator-dependent children and their families, especially those who care for children over long periods.
在对北加利福尼亚州18个家庭进行的横断面调查中，研究了为依赖呼吸机的儿童提供家庭护理的影响。通过使用保密的结构化访谈和家庭影响量表，我们获得了有关家庭人口统计学、儿童医疗状况、对家庭的经济、社会和个人影响，以及父母在家中护理依赖呼吸机儿童的应对能力等信息。对家庭影响量表得分的分析表明，主要照顾者与其配偶在感知到的家庭影响方面没有差异。然而，样本中的主要照顾者在家庭通气护理时间较长时，应对分量表得分显著降低。这一发现如果在未来的研究中得到证实，将对与依赖呼吸机的儿童及其家庭打交道的医生和其他卫生专业人员具有政策意义，尤其是那些长期照顾儿童的人员。
