Patterson J M, Budd J, Goetz D, Warwick W J
School of Public Health, University of Minnesota, Minneapolis 55455.
Pediatrics. 1993 Feb;91(2):383-9.
In this study, 33% of the variance in the 10-year trend of forced expiratory volume in 1 second (FEV1), used as an index of pulmonary health, was explained by differences in family characteristics at the start of the study. Balanced family coping, a family emphasis on personal growth, and compliance with treatment for 91 children with cystic fibrosis were assessed at the start of the study and the FEV1 was observed at every clinic visit over the next 10 years. When both parents' coping emphasized family integration, support for self, and medical consultation, the FEV1 trend was better. Compliance with daily chest physical therapy and with quarterly clinic visits was associated with a better FEV1 trend. Poorer FEV1 trend was associated with active social involvement of family members. Older patients and patients whose parents worked more hours outside the home had lower compliance. These findings support the importance of encouraging families to balance their resources between the child's health needs and family needs.
在本研究中,作为肺部健康指标的一秒用力呼气量(FEV1)10年趋势中33%的差异可由研究开始时家庭特征的差异来解释。在研究开始时评估了91名囊性纤维化患儿家庭的平衡应对、对个人成长的家庭重视程度以及对治疗的依从性,并在接下来的10年里每次门诊就诊时观察FEV1。当父母双方的应对都强调家庭融合、对自我的支持和医疗咨询时,FEV1趋势更好。对每日胸部物理治疗和每季度门诊就诊的依从性与更好的FEV1趋势相关。较差的FEV1趋势与家庭成员积极的社会参与有关。年龄较大的患者以及父母在家外工作时间更长的患者依从性较低。这些发现支持了鼓励家庭在孩子的健康需求和家庭需求之间平衡资源的重要性。