Twoy Richard, Connolly Phyllis M, Novak Jean M
School of Nursing, San Jose State University, One Washington Square, San Jose, California 95192-0057, USA.
J Am Acad Nurse Pract. 2007 May;19(5):251-60. doi: 10.1111/j.1745-7599.2007.00222.x.
The purpose of this research was to determine (a) the level of family adaptation, as measured by the Family Crisis Oriented Personal Evaluation Scales (F-COPESs) instrument, among persons with a child diagnosed with autism spectrum disorder (ASD) aged 12 years and under, (b) if there was a difference in F-COPES scores based on family demographics, and (c) the time lag between parent's suspicion of ASD and the actual professional diagnosis of ASD.
A descriptive survey was used with a convenience sample derived from ASD treatment agencies and a parental support group in the California Bay Area that supports the children and parents of children with special needs.
Overall, the level of adaptation was within the normal limits with coping scores similar to the norm scores of the F-COPES with males scoring slightly higher than females in the coping scale. Subscale scores of the F-COPES indicated that the parents sought encouragement and support from friends, informal support from other families who faced similar problems, and formal support from agencies and programs. Reframing revealed similar results as the norm with less use of spiritual support, and more passive appraisals were noted from the parents of children with ASD. Within internal comparisons, there were no statistical differences among gender and amount of time a member spent in coordination of services. Comparisons in ethnicity for Caucasians and Asian Americans revealed a higher coping score for reframing in Asian Americans and a higher passive appraisal score among Caucasians. Non-English speakers scored higher on spiritual support, while English speakers scored higher in passive appraisals. Because of insufficient statistical power, comparisons in education, income, marital status, and relocation of residence were deferred. The time from parents' suspicions of developmental delays or disability to a professional diagnosis of ASD was at least 6 months or greater.
It is imperative for nurse practitioners (NPs) to provide appropriate professional support and other social support systems to families with children with ASD. Educating parents to sound therapy approaches to provide them with the skills needed to directly address stressful events in order to increase the parent's confidence level as to avoid passive appraisals is also a crucial role of the NP. NPs may want to use the F-COPES as part of the assessment to ascertain the areas of needs of families. This study reveals the resiliency and highly adaptive nature of these parents who are under severe strain and stress of caring for a child with ASD. The effective ways they coped as a family were in the areas of informal and formal social support networks. Participants also used passive appraisal to cope. The study also supports the need for early recognition and diagnoses of ASD and referral for early intervention for better outcomes for the children and families affected by ASD.
本研究的目的是确定:(a) 12岁及以下被诊断患有自闭症谱系障碍(ASD)儿童的家庭适应水平,通过家庭危机导向个人评估量表(F-COPES)进行测量;(b) F-COPES得分是否因家庭人口统计学特征存在差异;(c) 父母怀疑孩子患有ASD与实际专业诊断ASD之间的时间间隔。
采用描述性调查,样本为便利样本,来自加利福尼亚湾区的ASD治疗机构以及一个为有特殊需求儿童及其父母提供支持的家长支持小组。
总体而言,适应水平处于正常范围,应对得分与F-COPES的常模得分相似,在应对量表中男性得分略高于女性。F-COPES的子量表得分表明,父母寻求朋友的鼓励和支持、面临类似问题的其他家庭的非正式支持以及机构和项目的正式支持。重新评估显示出与常模相似的结果,即较少使用精神支持,并且ASD儿童的父母更多地采用消极评估。在内部比较中,性别和成员协调服务所花费的时间之间没有统计学差异。白人和亚裔美国人在种族方面的比较显示,亚裔美国人在重新评估方面的应对得分较高,而白人的消极评估得分较高。非英语使用者在精神支持方面得分较高,而英语使用者在消极评估方面得分较高。由于统计效力不足,教育程度、收入、婚姻状况和居住迁移方面的比较被推迟。从父母怀疑发育迟缓或残疾到专业诊断ASD的时间至少为6个月或更长。
执业护士(NP)必须为患有ASD儿童的家庭提供适当的专业支持和其他社会支持系统。教育父母关于声音治疗方法,为他们提供直接应对压力事件所需的技能,以提高父母的信心水平,从而避免消极评估,这也是NP的关键作用。NP可能希望将F-COPES用作评估的一部分,以确定家庭的需求领域。本研究揭示了这些在照顾患有ASD儿童时承受巨大压力的父母的适应力和高度适应性。他们作为一个家庭有效应对的方式在于非正式和正式的社会支持网络领域。参与者也采用消极评估来应对。该研究还支持对ASD进行早期识别和诊断,并转介进行早期干预,以便为受ASD影响的儿童和家庭带来更好的结果。