Perceptions of children with HIV infection when not told for so long: implications for diagnosis disclosure.
Perceptions of children with HIV infection when not told for so long: implications for diagnosis disclosure.
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DOI：
10.1016/s0891-5245(00)33836-6
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发表时间：
2000-09-01
期刊：
影响因子：
--
通讯作者：
Instone, S L
中科院分区：
文献类型：
--
作者：
Instone, S L
简介：根据家长/监护人对儿童诊断的沟通，评估感染 HIV 的学龄儿童对其疾病的看法，以澄清披露指南。方法：一项创新的定性研究设计，采用扎根理论和投影绘图的方法，涉及来自西海岸儿科艾滋病临床试验治疗中心的 12 名儿童和 13 名家长/监护人。结果：出现了家长/监护人与儿童之间互动的特定过程，如果长时间不告知的话，就会出现作为研究的中心现象。父母/监护人在诊断后 2 至 8 年内对儿童的 HIV 感染情况保密。无论披露情况如何，孩子们的绘画和对话都表明了严重的情绪困扰、自我形象受损和社会孤立。父母和监护人没有意识到孩子们的担忧。讨论：虽然孩子们生活中的其他情况导致了他们心理社会适应能力差，但对疾病长时间的沉默也是他们适应力差的一个原因。父母/监护人没有意识到他们的孩子何时需要更多支持性信息。因此，儿科临床医生应不断评估儿童的社会心理适应情况，以指导家庭完成披露过程。投影绘图技术的使用可以促进这一过程。
INTRODUCTION: The perceptions of school-aged children with HIV infection about their illness were evaluated in light of parental/guardians communication about the child's diagnosis to clarify guidelines for disclosure.METHOD: An innovative, qualitative research design using methods of grounded theory and projective drawings involved 12 children and 13 parents/guardians from a West Coast Pediatric AIDS Clinical Trial treatment center.RESULTS: A specific process of interaction between parents/guardians and children, when not told for so long, emerged as the central phenomenon of the study. Parents/guardians kept the children's HIV infection secret for 2 to 8 years after diagnosis. Regardless of disclosure status, the children's drawings and conversations suggested severe emotional distress, disturbed self-image, and social isolation. Parents and guardians were unaware of their children's concerns.DISCUSSION: Although other circumstances of the children's lives contributed to their poor psychosocial adjustment, the long interval of silence about the illness also played a part in their poor adjustment. Parents/guardians did not recognize when their children needed more supportive information. Pediatric clinicians should therefore continually assess children's psychosocial adjustment to guide families through the disclosure process. The use of projective drawing techniques can facilitate this process.