在定性镜头下,状细胞疾病的经验
Winnie Samanú Lima Lopes1, Martha Cristina Nunes Moreira2, Romeu Gomes2
1Departamento de Ensino, Instituto Fernandes Figueira (IFF/Fiocruz). Av. Rui Barbosa 716, Flamengo. 22250-020 Rio de Janeiro RJ Brasil. winnie.samanu@gmail.com.
Ciencia & saude coletiva
|September 6, 2023
概括
状细胞疾病的体验是由日常生活,护理和污名感塑造的,这些污名感通常与种族有关. 这种定性分析揭示了这些因素如何导致排斥和隐形,使其与一般疾病体验区别开来.
科学领域:
- 医学社会学 医学社会学
- 质量健康研究 质量健康研究
- 患者体验研究 患者体验研究
背景情况:
- 状细胞疾病 (SCD) 在临床症状之外显著影响患者的生活.
- 了解SCD的生活经验对于全面的护理和支持至关重要.
- 现有的文献往往忽略了SCD经验的细微,多方面的性质.
研究的目的:
- 分析关于状细胞病的定性研究 (2000-2023年).
- 为"状细胞疾病经验"开发一个分析类别.
- 探索影响SCD体验的维度,包括社会和文化因素.
主要方法:
- 定性文献研究. 定性文献研究.
- 现有文献的主题内容分析.
- 理论-概念框架指导分析.
主要成果:
- 确定了八个解释维度:日常生活,护理,生殖决策,耻辱,性别,参与,种族和宗教信仰.
- 状细胞疾病的体验以排斥,值,无知和不可见性为特征.
- 种族和民族是影响SCD体验的重要交叉组件.
结论:
- 状细胞疾病的体验与一般疾病的体验不同,原因是交叉的社会和种族因素.
- 解决耻辱感,促进参与,承认种族/种族细微差别对于改善患者福祉至关重要.
- 进一步的研究应该探索这些维度,以加强状细胞疾病的以患者为中心的护理.
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