Lowton Karen
Department of Palliative Care and Policy, Guy's King's and St Thomas' School of Medicine, King's College, London.
Qual Health Res. 2004 Feb;14(2):167-86. doi: 10.1177/1049732303260675.
Cystic fibrosis has traditionally been conceptualized as a fatal childhood disease. In contrast, survival age has been increasing steadily such that adults now routinely seek to gain employment and form close relationships, situations that might require telling others about the disease. Here, the author examines three situations of disclosure based on interviews with 31 adults with the disease. First, in a low-risk situation, for example a short period of social contact, a low level of intimacy exists between the adult with cystic fibrosis and another. Here the disease may be concealed easily with little risk of discovery. Second, in a medium-risk situation, the perceived reaction of the other begins to influence the decision to disclose, as the level of intimacy becomes higher. Last, in high-risk situations, such as employment, the consequences of disclosing or concealing CF are most severe. However, a multiplicity of factors, including perceived social support and disease progression, are seen to influence adults' decisions to disclose their disease.
传统上,囊性纤维化被视为一种致命的儿童疾病。相比之下,患者的存活年龄一直在稳步上升,以至于现在成年患者经常寻求就业并建立亲密关系,而在这些情况下可能需要向他人透露自己的病情。在此,作者基于对31名成年囊性纤维化患者的访谈,研究了三种病情披露情况。首先,在低风险情况下,例如短期社交接触,成年囊性纤维化患者与他人之间的亲密度较低。在这种情况下,病情可能很容易被隐瞒,被发现的风险很小。其次,在中等风险情况下,随着亲密度的提高,对方可能的反应开始影响披露病情的决定。最后,在高风险情况下,如就业时,披露或隐瞒囊性纤维化病情的后果最为严重。然而,包括感知到的社会支持和疾病进展在内的多种因素,被认为会影响成年患者披露病情的决定。