这是一场战斗，也是一种祝福：自闭症谱系障碍儿童的监护祖辈的经历和需求。
It's a Battle and a Blessing: The Experience and Needs of Custodial Grandparents of Children with Autism Spectrum Disorder.
机构信息
Applied Psychology Program, The Pennsylvania State University, Berks College, Franco 119, Tulpehocken Road, PO Box 7009, Reading, PA, 19610, USA.
Post Baccalaureate Certificate Program in Autism Studies, College of Health Professions, Towson University, Towson, USA.
出版信息
J Autism Dev Disord. 2019 Jan;49(1):260-269. doi: 10.1007/s10803-018-3761-0.
We know little about custodial grandparents of children with autism spectrum disorder (ASD) who offer a vital social safety net. 117 custodial grandparents of children with ASD from 37 states completed an online survey with open-ended questions about their "greatest challenges and joys" as grandparent. Grounded theory analysis revealed four categories of experience (Issues with Adult Children, Caregiving Burden, Coping, & Wisdom) explained by 15 themes. Grandparents' stressors encompassed custody issues, ASD problem behaviors like tantrums and eloping, insufficient ASD services, financial burden, 24/7 caregiving demands, social isolation, and fears for the future. Grandparents' coping included celebrations of progress, unconditional love, faith, and a positive focus. Grandparents' wisdom included patience and insight. Recommendations to support these caregivers are provided.
我们对照顾自闭症谱系障碍（ASD）儿童的隔代祖父母知之甚少，他们为孩子提供了重要的社会安全网。来自 37 个州的 117 名照顾 ASD 儿童的隔代祖父母完成了一项在线调查，其中包含有关他们作为祖父母的“最大挑战和乐趣”的开放式问题。扎根理论分析揭示了四个类别的经验（与成年子女有关的问题、照顾负担、应对和智慧），由 15 个主题解释。祖父母的压力源包括监护权问题、自闭症问题行为，如发脾气和逃跑、自闭症服务不足、经济负担、24/7 的照顾需求、社会孤立和对未来的担忧。祖父母的应对方式包括庆祝进步、无条件的爱、信仰和积极的关注。祖父母的智慧包括耐心和洞察力。为了支持这些照顾者，我们提出了一些建议。
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