How a child's gender mediates maternal care and expectations in the fatigue experiences of adolescents with sickle cell disease
How a child's gender mediates maternal care and expectations in the fatigue experiences of adolescents with sickle cell disease
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DOI：
10.1080/13229400.2022.2060851
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发表时间：
2022-04-05
影响因子：
1.6
通讯作者：
Kirk, Susan
中科院分区：
文献类型：
--
作者：
Poku, Brenda Agyeiwaa;Pilnick, Alison;Kirk, Susan
尽管疲劳在镰状细胞病（SCD）中具有慢性和生物心理社会意义，但在了解疾病经历和SCD对儿童，年轻人及其家庭的社会后果时很少优先考虑。本研究探讨疲劳的社会意义和意义的年轻人与SCD。这项检查涉及对父母（母亲）护理/支持的看法。我们采用了建构主义扎根理论的方法。这项研究的数据是从加纳24名有目的抽样的SCD青少年中收集的。为确保数据的全面性和可信性，采用了一种结合半结构化和照片启发式访谈的多方法方法来生成数据。研究结果显示，SCD青少年对自己性别的知觉，在母亲关怀与期望的中介作用。据他们说，他们的母亲对SCD对他们的重要性的解释取决于性别文化规范。女孩们描述说，她们的母亲优先考虑她们的能力，以符合性别的期望，而不是她们的疾病和限制。相比之下，男孩认为他们的母亲优先考虑他们的疾病，而不是满足性别期望。总之，性别化的父母教养方式会影响青少年的社会地位、自我意识以及追求独立和自我照顾的能力。因此，在针对慢性病儿童的父母教育和家庭干预措施中应考虑文化（性别）期望。
Despite the chronicity and biopsychosocial significance of fatigue in sickle cell disease (SCD), it is rarely prioritized in understanding illness experiences and the social consequences of SCD for children, young people and their families. This study examined fatigue's social meaning and significance for young people with SCD. This examination involved perspectives on parental (maternal) care/support. We adopted a constructivist grounded theory approach. Data for the study was gathered from 24 purposively sampled adolescents with SCD in Ghana. A multi-method approach, combining semi-structured and photo-elicitation interviews, was used to generate data to ensure comprehensiveness and credibility. The findings indicated that adolescents with SCD perceived their gender to mediate their mothers' care and expectations. According to them, their mothers' interpretations of the significance of SCD for them were dependent on gendered cultural norms. The girls described their mothers as prioritizing their ability to conform to gendered expectations over their illness and limitations. By contrast, the boys presented their mothers as prioritizing their illness over meeting gendered expectations. In conclusion, gendered parenting practices influence adolescents' social status, sense of self, and ability to pursue independence and self-care. Consequently, cultural (gender) expectations should be considered in parental education and family interventions targeting chronically-ill children.