The discovery of autism: Indian parents' experiences of caring for their child with an autism spectrum disorder.
The discovery of autism: Indian parents' experiences of caring for their child with an autism spectrum disorder.
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DOI：
10.1177/1363461512447139
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发表时间：
2012-07
影响因子：
2.5
通讯作者：
Patel V
中科院分区：
文献类型：
--
作者：
Desai MU;Divan G;Wertz FJ;Patel V
目前的研究调查了印度果阿 12 名患有自闭症谱系障碍儿童的父母在日常文化背景下的生活经历。使用现象学心理学的程序对 2009 年至 2010 年间收集的家长叙述进行了分析。这些数据显示了父母经历的四个时间阶段。研究结果表明，孩子生命的最早阶段是相对正常和社会凝聚力的时期。在第二阶段，孩子的行为开始扰乱日常社会秩序，但父母认为这些意外行为是暂时的。在第三阶段，父母在公共场合的观察以及对他人的评估导致了质的转变，父母开始意识到存在一个持续存在的问题干扰着孩子的社交和实践活动。在第四阶段，父母努力培养孩子的能力，以满足当地社会现有的实际机会，同时尝试重塑社会世界，以适应像他们自己的孩子的能力和局限性。父母在整个旅程中最关心的问题是：作为父母，学习应对新的和不熟悉的挑战，照顾孩子的基本需求，并在日常环境中为孩子找到一个具有归属感的有吸引力的利基。总体研究结果描述了特定文化和潜在普遍的经验水平。讨论了对印度和其他低收入和中等收入国家的文化敏感研究和实践的影响。
The current study investigated the lived experience of 12 parents of children with an Autism Spectrum Disorder in everyday cultural contexts in Goa, India. Narratives from parents collected between 2009 and 2010 were analyzed using the procedures of phenomenological psychology. Four temporal phases of parents’ experience emerged from these data. Findings showed that the earliest phase of the child’s life was a period of relative normalcy and social cohesion. In the second phase, the child’s behaviors began to disrupt the everyday social order, but parents viewed these unexpected behaviors as temporary. In the third phase, parents’ observations in public situations, along with assessments of others, led to a qualitative shift in which parents began to perceive that there was a persisting problem interfering with their child’s social and practical activities. In the fourth phase, parents grappled with developing their child’s capacities to meet existing practical opportunities in the local society, while attempting to reshape the social world to accommodate the abilities and limits of children like their own. Parents’ fundamental concerns throughout their journey were: learning to meet new and unfamiliar challenges as parents, caring for their child’s basic needs, and finding an engaging niche with a sense of belonging for their child in the everyday milieu. Both culture-specific and potentially universal levels of experience are delineated in the overall findings. Implications for culturally sensitive research and practice in India and other low- and middle-income countries are discussed.