Department of Psychology, Fordham University, 441 East Fordham Road, Bronx, NY 10458, USA.
Transcult Psychiatry. 2012 Jul;49(3-4):613-37. doi: 10.1177/1363461512447139. Epub 2012 Jun 21.
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.
本研究调查了印度果阿邦 12 名自闭症谱系障碍儿童父母的日常生活体验。2009 年至 2010 年间收集的父母叙述，采用现象学心理学的程序进行分析。从这些数据中得出了父母体验的四个时间阶段。研究结果表明，孩子生命的最初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的社会秩序，但父母认为这些意外的行为是暂时的。在第三阶段，父母在公共场合的观察以及对他人的评估，导致了一种质的转变，父母开始意识到存在一个持续存在的问题，干扰了他们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，同时试图重塑社会世界，以容纳像他们自己孩子这样的能力和限制。父母在整个旅程中最关心的问题是：作为父母，学会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有归属感的参与空间。整体研究结果描绘了具有文化特异性和潜在普遍性的体验层次。讨论了在印度和其他低收入和中等收入国家进行文化敏感研究和实践的意义。
