Blake Alphanso, Asnani Vikram, Leger Robin R, Harris June, Odesina Victoria, Hemmings Daileann L, Morris Denise A, Knight-Madden Jennifer, Wagner Linda, Asnani Monika Rani
a Sickle Cell Unit , Caribbean Institute for Health Research, The University of the West Indies , Kingston 7 , Jamaica.
b Faculty of Medical Sciences , The University of the West Indies , Mona Campus, Kingston 7 , Jamaica.
Hematology. 2018 Mar;23(2):122-130. doi: 10.1080/10245332.2017.1359898. Epub 2017 Aug 2.
Persons with sickle cell disease (SCD) experience multiple medical and physical complications; the disease also has numerous effects on their social and emotional well-being. We hypothesized that adults with SCD in Jamaica experience moderate levels of stigma and illness uncertainty and that these experiences may be associated with socio-demographic factors, such as gender, educational status and economic status.
We surveyed 101 adults with SCD (54.5% female; mean age 31.6 ± 10.4 years; 72.2% homozygous SCD) using the Stigma in Sickle Cell Disease Scale (Adult), Mishel Uncertainty in Illness Scale (Adult) and a Socio-Demographic questionnaire.
The mean stigma score was 33.6 ± 21.6 (range: 2-91) with no significant difference between males and females (32.3 ± 21.3 vs. 34.7 ± 21.9; p-value = 0.58). Illness uncertainty was greater in females than in males, though not statistically significant, (88.7 ± 13.5 vs. 82.6 ± 19.2; p-value: 0.07). Stigma and uncertainty had a significant positive correlation (r: 0.31; p-value: 0.01). In an age and sex controlled model, stigma scores were lower with higher numbers of household items (coef: -2.26; p-value: 0.001) and higher in those living in greater crowding (coef: 7.89; p-value: 0.002). Illness uncertainty was higher in females (coef: 6.94; p-value: 0.02) and lower with tertiary as compared with primary education (coef: -16.68; p-value: 0.03).
The study highlights socioeconomic factors to be significant to the stigma and illness uncertainty experiences in SCD. Efforts by healthcare workers to reduce patient illness uncertainty may have additional impact, reducing their stigma.
镰状细胞病（SCD）患者会经历多种医学和身体并发症；该疾病也对他们的社会和情感幸福产生诸多影响。我们推测，牙买加患有SCD的成年人经历中等程度的耻辱感和疾病不确定性，并且这些经历可能与社会人口学因素相关，如性别、教育程度和经济状况。
我们使用镰状细胞病耻辱感量表（成人版）、米舍尔疾病不确定性量表（成人版）和一份社会人口学问卷对101名患有SCD的成年人进行了调查（54.5%为女性；平均年龄31.6±10.4岁；72.2%为纯合子SCD）。
耻辱感平均得分为33.6±21.6（范围：2 - 91），男性和女性之间无显著差异（32.3±21.3对34.7±21.9；p值 = 0.58）。女性的疾病不确定性高于男性，尽管无统计学意义（88.7±13.5对82.6±19.2；p值：0.07）。耻辱感和不确定性呈显著正相关（r：0.31；p值：0.01）。在年龄和性别控制模型中，家庭物品数量越多，耻辱感得分越低（系数： - 2.26；p值：0.001），居住环境越拥挤，耻辱感得分越高（系数：7.89；p值：0.002）。女性的疾病不确定性更高（系数：6.94；p值：0.02），与小学教育相比，接受高等教育者的疾病不确定性更低（系数： - 16.68；p值：0.03）。
该研究强调社会经济因素对SCD患者的耻辱感和疾病不确定性体验具有重要意义。医护人员为降低患者疾病不确定性所做的努力可能会产生额外影响，减少他们的耻辱感。
