Department of Health Sociology, Graduate School of Health Sciences and Nursing, The University of Tokyo, 7-3-1 Hongo, Bunkyo-ku, Tokyo 113-0033, Japan.
BMC Pregnancy Childbirth. 2010 Oct 26;10:69. doi: 10.1186/1471-2393-10-69.
Pervasive developmental disorder (PDD) has an uncertain etiology, no method of treatment, and results in communication deficiencies and other behavioral problems. As the reported recurrence risk is 5%-10% and there are no methods of either prevention or prenatal testing, mothers of PDD children may face unique challenges when contemplating second pregnancies. The purpose of this study was to explore the mothers' lived experiences of second child-related decision-making after the birth of a child with PDD.
The participants for this study were restricted to mothers living within the greater Tokyo metropolitan area who had given birth to a first child with PDD within the past 18 years. The ten participants were encouraged to describe their experiences of second-child related decision-making after the birth of a child with PDD on the basis of semi-structured interviews. Data analysis was performed by using Interpretive Phenomenological Analysis (IPA), which is concerned with understanding what the participant thinks or believes about the topic under discussion.
We identified two superordinate themes. The first was balancing hopes and fears, in which hope was the potential joy to be gained by the birth of a new child without PDD and fears were characterized as uncertainty of PDD and perception of recurrence risk, burden on later-born children, and negative effects on a child with PDD.The second superordinate theme was assessing the manageability of the situation, which was affected by factors as diverse as severity of PDD, relationship between mother and father, and social support and acceptance for PDD. Our 10 participants suffered from extreme psychological conflict, and lack of social support and acceptance for PDD created numerous practical difficulties in having second children.
Our participants faced various difficulties when considering second pregnancies after the birth of children with PDD in the Japanese society. As lack of social support and acceptance for PDD also played a large role in second child-related decision-making, creating a social environment that more fully accepts those disabled and providing flexible support systems for families of children with PDD are crucial.
广泛性发育障碍（PDD）病因不明，尚无治疗方法，导致沟通障碍和其他行为问题。由于报道的复发风险为 5%-10%，且既无法预防也无法进行产前检测，因此 PDD 患儿的母亲在考虑二胎时可能会面临独特的挑战。本研究旨在探讨 PDD 患儿母亲在生育第二胎时与二胎相关的决策过程。
本研究的参与者仅限于居住在大东京都市区的母亲，她们在过去 18 年内生育了患有 PDD 的第一胎。根据半结构化访谈，鼓励这 10 名参与者描述她们在生育 PDD 患儿后的二胎相关决策经历。数据分析采用解释现象学分析（IPA），IPA 关注的是参与者对讨论主题的思考或信念。
我们确定了两个上位主题。第一个主题是平衡希望和恐惧，希望是指没有 PDD 的新生儿带来的潜在喜悦，而恐惧则表现为对 PDD 的不确定性和对复发风险的感知、对后来出生的孩子的负担以及对 PDD 患儿的负面影响。第二个上位主题是评估情况的可管理性，这受到 PDD 的严重程度、母子关系以及社会支持和对 PDD 的接受程度等各种因素的影响。我们的 10 名参与者经历了极度的心理冲突，对 PDD 的社会支持和接受程度不足，给生育二胎带来了诸多实际困难。
在日本社会，PDD 患儿的母亲在考虑生育二胎时面临各种困难。由于对 PDD 的社会支持和接受程度也在二胎相关决策中起着重要作用，因此创造一个更充分接纳残疾人士的社会环境，以及为 PDD 患儿家庭提供灵活的支持系统至关重要。
