Giarelli Ellen, Souders Margaret, Pinto-Martin Jennifer, Bloch Joan, Levy Susan E
University of Pennsylvania, School of Nursing, Philadelphia, PA, USA.
Pediatr Nurs. 2005 Sep-Oct;31(5):389-99.
Parents of children who receive the diagnosis of autistic spectrum disorder (ASD) experience a situational crisis related to receiving the diagnosis, which causes feelings of distress and urgency to access services for the affected child. This paper describes a randomized trial (n = 31) that was conducted at a regional diagnostic center of a large metropolitan children's hospital to (a) refine a nursing intervention designed for parents of children with ASD and (b) to identify methodological revisions for a larger study. A secondary purpose was to test the effects of a post-diagnosis nursing intervention on parents' reports of stress, impact of event (diagnosis), and use of services after a child is newly diagnosed with ASD. The intervention consisted of usual care plus 3 hours contact with a pediatric nurse practitioner (PNP) for counseling, instruction, and assistance with implementation of the recommended treatment plan. The control group received only the usual care post-diagnosis, which consisted of a 1-hour consultation session to receive the results of diagnostic tests and a written copy of the recommended treatment plan provided by a developmental pediatrician and/or PNP. Between group differences in measures of "impact of event" and "perceived stress" were not statistically significant. This was attributed to a small sample size. A larger study is feasible and recommended with an expanded nursing intervention and a significantly larger sample recruited from an additional recruitment site. Nurses working with this special population must recognize that parents have information and counseling needs that begin after they receive the diagnosis of ASD for their child and can address these needs with a standardized nursing intervention.
孩子被诊断为自闭症谱系障碍（ASD）的家长，在得知诊断结果后会经历一种情境危机，这会引发痛苦情绪以及为患病孩子寻求服务的紧迫感。本文描述了一项在一家大型都市儿童医院的区域诊断中心进行的随机试验（n = 31），目的是（a）完善为ASD患儿家长设计的护理干预措施，以及（b）确定一项更大规模研究的方法学修订内容。第二个目的是测试诊断后护理干预对家长报告的压力、事件（诊断）影响以及孩子新被诊断为ASD后服务使用情况的效果。干预措施包括常规护理加上与一名儿科执业护士（PNP）进行3小时的接触，以提供咨询、指导并协助实施推荐的治疗方案。对照组在诊断后仅接受常规护理，包括1小时的咨询会议以获取诊断测试结果，以及一份由发育儿科医生和/或PNP提供的推荐治疗方案的书面副本。组间在“事件影响”和“感知压力”测量指标上的差异无统计学意义。这归因于样本量较小。开展一项更大规模的研究是可行的，建议扩大护理干预措施，并从另外一个招募地点招募显著更多的样本。与这一特殊人群打交道的护士必须认识到，家长在孩子被诊断为ASD后就有信息和咨询需求，并且可以通过标准化的护理干预来满足这些需求。
