Rufener E A
Psychother Psychosom Med Psychol. 1992 Sep-Oct;42(9-10):339-48.
Coping with disease was studied in a group of ten persons suffering from erythropoietic protoporphyria (EPP), a chronic congenital metabolic disorder that manifests itself in extreme sensitivity to ultraviolet light. Sufferers experienced medical prophylaxis as ineffective or counterproductive. The BEFO technique (Berner Bewältigungsformen BEFO, 3 dimensions, 27 categories) was used in assessing the coping strategies. The sufferers' interviews were evaluated on the basis of transcripts. Stressors and respective coping strategies were defined and analysed for each person individually. Sufferers are confronted with their disease virtually every day. For each stressor the set of strategies tends to be specific either to the disease, the environment or it may reflect personality traits. Most of the sufferers did not develop an effective mode of adaptive behavior, i.e. coping with the pain/stigma dilemma, until they passed their third decade. While it undeniably presents an intense personal challenge, coping with disease must be seen to include major societal aspects as well.
对一组患有红细胞生成性原卟啉症（EPP）的十人进行了疾病应对研究。EPP是一种慢性先天性代谢紊乱疾病，表现为对紫外线极度敏感。患者认为医学预防措施无效或适得其反。采用BEFO技术（伯尔尼应对形式BEFO，3个维度，27个类别）评估应对策略。根据访谈记录对患者的访谈进行评估。针对每个人分别确定并分析应激源和相应的应对策略。患者几乎每天都要面对自己的疾病。对于每个应激源，应对策略集往往特定于疾病、环境，或者可能反映个性特征。大多数患者直到三十多岁才形成有效的适应性行为模式，即应对疼痛/耻辱困境。虽然应对疾病无疑是一项严峻的个人挑战，但也必须认识到它还包括重大的社会层面。
