CONTEXTUAL MODEL OF FAMILY COPING WITH CYSTIC FIBROSIS

目前这项研究的目的是制定一种衡量情况的方法- 慢性疾病儿童的特定压力源和应对策略 他们的父母。以前关于压力和应对的研究一直受到 使用定义不佳的构造，以及未能考虑上下文 应激源的严重程度和发展任务等因素 个人和家庭。为改善这些不足之处，建议的 研究将采用对具体问题的情景分析和 与儿童慢性疾病和正常发育相关的需求。 研究1的具体目标是：1)评估问题和 囊性脑病儿童两个发育队列的应对行为 纤维化(CF)及其父母，2)制定经验性评级 针对特定问题的具体应对策略的有效性， 3)考察问题严重性、应对方式选择之间的关系 战略和功能结果。60名患有CF(30学龄)的儿童 和30名青少年)和他们的父母来自莱利儿童医院， 印第安纳大学医学中心和匹兹堡儿童医院， 匹兹堡大学医学院将参与研究1。 结构化访谈、日常日记和标准化问卷将 用来编制问题情况清单。收视率 各种应对策略的能力将来自于对 患有CF的儿童、父母和医疗保健专业人员。跟随 编制问题清单和评分员手册，研究2将 采用两波纵向设计，目标如下：1) 评估测量的面向标准的有效性，2)测试 应对行为在应对频率和严重程度上的中介作用 具体问题和相关结果，以及3)评估 不同民族在压力感知和应对策略使用上的差异 家庭成员。来自莱利的60名患有CF的青少年及其父母 儿童医院将被要求完成问题清单， 标准化问卷，活动模式指标在两个 在6-8个月内获得积分。通过将问题直接与有效的 这项研究将为儿童和家庭的应对行为提供 制定预防性行为干预措施的基础。

The purpose of the current study is to develop a measure of situation- specific stressors and coping strategies for chronically ill children and their parents. Prior research on stress an coping has been limited by the use of poorly defined constructs and a failure to consider contextual factors such as the severity of the stressor and the developmental tasks of the individual and family. To ameliorate these inadequacies, the proposed study will employ a situational analysis of the specific problems and demands associated with chronic childhood illness and normal development. The specific objectives of study 1 are: 1) to assess the problems and coping behaviors of two developmental cohorts of children with cystic fibrosis (CF) and their parents, 2) To develop empirically-derived ratings of the effectiveness of specific coping strategies for particular problems, and 3) To examine relationships among problem severity, choice of coping strategies, and functional outcomes. Sixty children with CF (30 school age and 30 adolescents) and their parents from Riley Hospital for Children, Indiana University Medical Center and Children's Hospital of Pittsburgh, Pittsburgh University School of Medicine will participate in Study 1. Structured interviews, daily diaries and standardized questionnaires will be used to develop the inventory of problem situations. Ratings of the competence of various coping strategies will be derived from judgments of children with CF, parents, and health care professionals. Following construction of the problem inventory and raters manual, Study 2 will employ a two-wave longitudinal design with the following objectives: 1) To assess the criterion-oriented validity of the measure, 2) To test the mediating effects of coping behaviors on the frequency and severity of specific problems and related outcomes, and 3) To assess the impact of discrepancies in perception of stress and use of coping strategies among family members. Sixty adolescents with CF and their parents from Riley Hospital for Children will be asked to complete the problem inventory, standardized questionnaires, and the Activity Pattern Indicators at two points over a 6-8 month period. By linking problems directly to effective coping behaviors for both the child and family, this study will provide the basis for developing preventive behavioral interventions.