Bessette Gorlin Jocelyn, McAlpine Cynthia Peden, Garwick Ann, Wieling Elizabeth
Saint Catherine University Department of Nursing, G8H Whitby Hall, 2004 Randolph Avenue, St. Paul, MN.
University of Minnesota School of Nursing, Weaver-Densford Hall, Minneapolis, MN.
J Pediatr Nurs. 2016 Nov-Dec;31(6):580-597. doi: 10.1016/j.pedn.2016.09.002. Epub 2016 Oct 6.
This research examined the experiences of families living with a child with severe autism. There is limited literature on the experiences of families when a child has severe autism as distinct from milder autism and includes the voices of multiple family members. Van Manen's phenomenological approach was used for data collection and analysis. This approach allowed for the use of innovative data sources, including unstructured individual and family interviews, observations, and family lifelines (a pictorial, temporal picture with comments of the families lives). This study included 29 interviews with 22 participants from 11 families. All data were creatively triangulated and interpreted. Six essential themes were identified. First, families experienced autism as mysterious and complex because it is an invisible and unpredictable condition with diagnostic challenges. Second, families described severe autism behaviors that often caused self-injury, harm to others and damaged homes. Third, profound communication deficits resulted in isolation between the family and child. Fourth, families discussed the unrelenting stress from lack of sleep, managing the child's developmental delays, coordinating and financing services, and concern for the child's future. Fifth, families described consequences of isolation from friends, school, the public, and health providers. Sixth, families portrayed their need for compassionate support and formed 'hybrid families' (nuclear, extended families and friends) to gain support. Study results can be utilized to educate nurses/other providers about the unique needs of families with children with severe autism and could influence health care policies to improve the care for families caring for children with severe autism.
这项研究调查了家中有重度自闭症患儿的家庭的经历。关于家中孩子患有重度自闭症（有别于轻度自闭症）的家庭经历，且涵盖多名家庭成员声音的文献有限。本研究采用范曼的现象学方法进行数据收集与分析。这种方法允许使用创新的数据来源，包括非结构化的个人和家庭访谈、观察以及家庭生命线（一种带有对家庭生活评论的图片式时间线）。本研究包括对来自11个家庭的22名参与者进行的29次访谈。所有数据都经过了创造性的三角互证和解读。确定了六个基本主题。第一，家庭认为自闭症神秘而复杂，因为它是一种无形且不可预测的状况，诊断存在挑战。第二，家庭描述了重度自闭症行为，这些行为常常导致自我伤害、伤害他人以及破坏家庭。第三，严重的沟通障碍导致家庭与孩子之间相互隔离。第四，家庭讨论了因睡眠不足、应对孩子的发育迟缓、协调和资助服务以及担忧孩子未来而产生的持续压力。第五，家庭描述了与朋友、学校、公众和医疗服务提供者隔离的后果。第六，家庭描述了他们对同情性支持的需求，并组建了“混合家庭”（核心家庭、大家庭和朋友）以获得支持。研究结果可用于让护士/其他医疗服务提供者了解家中有重度自闭症患儿的家庭的独特需求，并可能影响医疗保健政策，以改善对照顾重度自闭症患儿家庭的护理。
