Ievers C E, Drotar D
Department of Psychology, Case Western Reserve University, Cleveland, Ohio, USA.
J Dev Behav Pediatr. 1996 Feb;17(1):48-55. doi: 10.1097/00004703-199602000-00008.
This article reviews 31 recent articles that describe the functioning of families and/or parents of children with cystic fibrosis (CF), compares them to families of healthy children, pinpoints factors that predict quality of adjustment, or evaluates interventions designed to improve functioning. Commonly cited concerns included the difficulty of the treatment regimen, the terminal nature of CF, and the disruption of intrafamilial relationships. Parents of children with CF experienced greater stress and burdens than parents of healthy children, yet parenting behavior and family functioning were quite similar in CF and healthy control groups. Higher levels of distress, an avoidant coping style, and low levels of family support were associated with poor psychological adjustment. Recommendations for future research include: using multiple informants; using detailed, illness-specific measures and conceptual frameworks; and conducting studies of individual variation and interventions. Practitioners might consider performing periodic updates of how the family is managing as a whole.
本文回顾了31篇近期文章，这些文章描述了囊性纤维化（CF）患儿家庭和/或父母的功能，将其与健康儿童家庭进行比较，找出预测适应质量的因素，或评估旨在改善功能的干预措施。常见的担忧包括治疗方案的难度、CF的终末期性质以及家庭内部关系的破坏。CF患儿的父母比健康儿童的父母经历了更大的压力和负担，但CF组和健康对照组的养育行为和家庭功能非常相似。较高水平的痛苦、回避型应对方式和低水平的家庭支持与不良的心理适应有关。对未来研究的建议包括：使用多个信息提供者；使用详细的、针对疾病的测量方法和概念框架；以及进行个体差异和干预措施的研究。从业者可能会考虑定期更新对家庭整体管理情况的了解。
