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.

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。