Hurtig A L
Department of Pediatrics, University of Illinois at Chicago 60612.
J Health Soc Policy. 1994;5(3-4):161-83. doi: 10.1300/J045v05n03_10.
This study represents the findings from interviews and assessments of children and adolescents with sickle cell disease and their parents regarding the quality of family relations, the degree to which sickle cell disease has impacted on these relations, and the variables which contribute to these relations. With 70 families as respondents, the data reveal a wide variance in quality of relations, but a broad base of positive relations. Parent report tends to be more positive than child report, both in terms of quality of relations and the impact of sickle cell disease on relations. Social support and knowledge about the disease are significant contributors to positive relations, while socioeconomic status, family structure, and illness severity are not predictive of quality of relations. With age and gender as covariates, results indicate that the families of girls tended to have more positive relations. The data suggest approaches to family and community support in order to help families maintain and build relations in the face of the stresses which sickle cell disease imposes.
本研究呈现了对镰状细胞病患儿及青少年及其父母进行访谈和评估的结果，内容涉及家庭关系质量、镰状细胞病对这些关系的影响程度以及促成这些关系的变量。70个家庭作为受访者，数据显示关系质量存在广泛差异，但积极关系的基础广泛。无论是在关系质量方面，还是在镰状细胞病对关系的影响方面，父母的报告往往比孩子的报告更积极。社会支持和对疾病的了解是积极关系的重要促成因素，而社会经济地位、家庭结构和疾病严重程度并不能预测关系质量。以年龄和性别作为协变量，结果表明女孩的家庭往往有更积极的关系。数据提出了家庭和社区支持的方法，以帮助家庭在面对镰状细胞病带来的压力时维持和建立关系。
