Phillips S, Bohannon W E, Gayton W F, Friedman S B
J Dev Behav Pediatr. 1985 Jun;6(3):122-7.
An assessment of the impact of cystic fibrosis (CF) was conducted with 43 families. Semistructured parental interviews on family functioning, parent-child interactions, sibling and peer relationships, and medical issues were coded by two independent raters to identify "major," "minor", or "no" problems. Of the 62 questions presented, only 8 were viewed by more than 10% of parents as "major problems." The impact of hospitalization upon parents was the most prevalent "major problem." Parental communication was a "major problem" for 28% of the mothers but for only one father. Ten to 15% of the parents described "major problems" related to: their marital relationship, accepting the illness, feeling they should do more for their child with CF, feeling their other children had been deprived or complained about inattention, or their relationship with the ill child's grandparents. While most families were generally coping successfully, health care professionals should be alert to specific areas of potential problems.
对43个家庭进行了囊性纤维化（CF）影响的评估。两位独立评估者对关于家庭功能、亲子互动、兄弟姐妹及同伴关系以及医疗问题的半结构化家长访谈进行编码，以确定“主要”“次要”或“无”问题。在提出的62个问题中，只有8个被超过10%的家长视为“主要问题”。住院对家长的影响是最普遍的“主要问题”。家长沟通对28%的母亲来说是“主要问题”，但对只有一位父亲来说是“主要问题”。10%至15%的家长描述了与以下方面相关的“主要问题”：他们的婚姻关系、接受疾病、觉得自己应该为患有CF的孩子做得更多、觉得自己的其他孩子被剥夺了权益或抱怨受到冷落，或者他们与患病孩子祖父母的关系。虽然大多数家庭总体上应对成功，但医疗保健专业人员应警惕潜在问题的特定领域。
