Nicholas David B, MacCulloch Radha, Roberts Wendy, Zwaigenbaum Lonnie, McKeever Patricia
University of Calgary, Edmonton, Alberta, Canada.
Holland Bloorview Kids Rehabilitation Hospital, Toronto, Ontario, Canada.
Glob Qual Nurs Res. 2020 Feb 19;7:2333393620907588. doi: 10.1177/2333393620907588. eCollection 2020 Jan-Dec.
This study explored the experiences of mothers caring for an individual with autism spectrum disorder (ASD) ranging from 5 to 25 years of age, and examined pervasive tensions in caregiving. Guided by ethnographic methods, a retrospective cross-sectional study was conducted. Interviews with 85 mothers were analyzed inductively. Prevalent tensions in maternal caregiving were identified: (a) difficulties obtaining, yet resistance to, an ASD diagnosis; (b) identified giftedness of the child versus notions of deficit imposed by others; (c) disability-related behaviors erroneously interpreted as 'poor parenting'; (d) contradictory considerations in diagnosis disclosure; (e) the invisibility yet pervasiveness of ASD; (f) extensive need for, yet the lack of, accessible services; (g) ASD-related care demands versus other pressing responsibilities; (h) arguments for inclusive versus exclusive services; and (i) aims of nurturing independence versus managing safety risk. Tensions were heightened by insufficient supports relative to need. Implications and recommendations for practice and policy are offered.
本研究探讨了照顾5至25岁自闭症谱系障碍（ASD）患者的母亲的经历，并审视了照护过程中普遍存在的紧张关系。在人种志方法的指导下，开展了一项回顾性横断面研究。对85位母亲的访谈进行了归纳分析。确定了母亲照护中普遍存在的紧张关系：（a）获得ASD诊断存在困难，但又对此存在抵触情绪；（b）孩子表现出的天赋与他人所认为的缺陷观念之间的矛盾；（c）与残疾相关的行为被错误地解读为“不良教养”；（d）在诊断告知方面存在相互矛盾的考量；（e）ASD的隐匿性及其普遍性；（f）对照护服务有着广泛需求，但可获得的服务却匮乏；（g）与ASD相关的照护需求与其他紧迫责任之间的矛盾；（h）关于包容性服务与排他性服务的争论；以及（i）培养独立性的目标与管理安全风险之间的矛盾。相对于需求而言，支持不足加剧了这些紧张关系。文中还提供了对实践和政策的启示及建议。
