Hoth Karin F, Wamboldt Frederick S, Ford Dee W, Sandhaus Robert A, Strange Charlie, Bekelman David B, Holm Kristen E
Department of Psychiatry, University of Iowa Carver College of Medicine, 200 Hawkins Drive, W278GH, Iowa City, IA, 52242, USA,
Int J Behav Med. 2015 Apr;22(2):223-32. doi: 10.1007/s12529-014-9423-5.
Illness uncertainty is associated with worse outcomes in patients with chronic health conditions. Research on social factors associated with uncertainty has focused on the beneficial role of social support. The goal of this study was to develop a more nuanced understanding of the social factors that are associated with uncertainty.
Four hundred sixty-two individuals with alpha-1 antitrypsin deficiency (AATD)-associated chronic obstructive pulmonary disease (COPD) completed a mailed questionnaire. Measures of the social environment included general family functioning, perceived criticism from family members, whether the participant had family members with AATD or COPD, and participation in support groups. Uncertainty was measured using the Mishel Uncertainty in Illness Scale including subscales for ambiguity (uncertainty about physical cues and symptoms) and complexity (uncertainty about treatment and the medical system). Hierarchical regression was used to identify social correlates of ambiguity and complexity while adjusting for demographic and medical characteristics and psychological distress.
Perceived criticism was associated with more complexity (b = 0.21, SE = 0.09, p = 0.015) and ambiguity (b = 0.40, SE = 0.12, p = 0.001). Having a family member with AATD or COPD was associated with more ambiguity (b = 3.28, SE = 1.00, p = 0.001). Participation in support groups was associated with less ambiguity. Individuals who attended three or more support groups in the prior year reported less ambiguity than individuals who had not attended any (b = -3.31, SE = 1.29, p = 0.010).
The social environment is complex and encompasses more than social support. Multiple aspects of the social environment are associated with uncertainty, including perceived criticism, having a family member with a similar illness, and participation in support groups.
疾病不确定性与慢性健康状况患者的较差预后相关。关于与不确定性相关的社会因素的研究主要集中在社会支持的有益作用上。本研究的目的是更细致地了解与不确定性相关的社会因素。
462名患有α-1抗胰蛋白酶缺乏症（AATD）相关慢性阻塞性肺疾病（COPD）的个体完成了一份邮寄问卷。社会环境的测量指标包括一般家庭功能、感知到的来自家庭成员的批评、参与者是否有患有AATD或COPD的家庭成员以及参与支持小组的情况。使用疾病不确定感量表测量不确定性，该量表包括模糊性（对身体线索和症状的不确定性）和复杂性（对治疗和医疗系统的不确定性）子量表。在调整人口统计学和医学特征以及心理困扰的同时，使用分层回归来确定模糊性和复杂性的社会相关因素。
感知到的批评与更多的复杂性（b = 0.21，标准误 = 0.09，p = 0.015）和模糊性（b = 0.40，标准误 = 0.12，p = 0.001）相关。有患有AATD或COPD的家庭成员与更多的模糊性相关（b = 3.28，标准误 = 1.00，p = 0.001）。参与支持小组与较少的模糊性相关。在前一年参加三个或更多支持小组的个体报告的模糊性低于未参加任何支持小组的个体（b = -3.31，标准误 = 1.29，p = 0.010）。
社会环境是复杂的，不仅仅包括社会支持。社会环境的多个方面与不确定性相关，包括感知到的批评、有患有类似疾病的家庭成员以及参与支持小组。
