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The Lived Experiences of Caregivers of Children with Sickle Cell Disease: A Phenomenological Study
American Journal of Family Therapy ( IF 0.9 ) Pub Date : 2021-06-28 , DOI: 10.1080/01926187.2021.1941420
Francesca Owoo 1, 2 , Eman Tadros 1, 2
Affiliation  

Abstract

Sickle Cell Disease (SCD) affects 100,000 Americans and one out of every 365 Black births. With a focused genogram and phenomenology, the intergenerational transmission of caregiving behaviors experienced with SCD was evaluated. Six African American primary caregivers discussed their experiences when caring for a child with SCD. Themes emerged: daily primary caregiver tasks; primary caregiver challenges: cognitive coping strategies and emotional coping strategies, knowledge and family history of SCT/SCD; experiences with the health care system; societal perceptions of SCD; and initial reaction to the diagnosis of SCD. Clinical implications and future research recommendations are provided.



中文翻译:

镰状细胞病儿童照顾者的生活经历:现象学研究

摘要

镰状细胞病 (SCD) 影响 100,000 名美国人和每 365 名黑人新生儿中的一名。通过集中的基因图和现象学,评估了 SCD 经历的护理行为的代际传递。六位非裔美国主要照顾者讨论了他们在照顾患有 SCD 的儿童时的经历。出现的主题:日常主要照顾者任务;主要照顾者挑战:认知应对策略和情绪应对策略、SCT/SCD 的知识和家族史;医疗保健系统的经验;社会对 SCD 的看法;以及对 SCD 诊断的初步反应。提供了临床意义和未来的研究建议。

更新日期:2021-06-28
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