Can I have a second child? dilemmas of mothers of children with pervasive developmental disorder: a qualitative study

Miyako Kimura,Mieko Mochizuki,Yoshihiko Yamazaki,Tomoko Omiya

doi:10.1186/1471-2393-10-69

Miyako Kimura, Mieko Mochizuki + Show 2 more

Open Access

https://doi.org/10.1186/1471-2393-10-69

Copy DOI

Abstract

BackgroundPervasive 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.MethodsThe 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.ResultsWe 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.ConclusionsOur 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.

Highlights

Pervasive developmental disorder (PDD) has an uncertain etiology, no method of treatment, and results in communication deficiencies and other behavioral problems
Recurrence risk for PDD/autistic spectrum disorders (ASD) has been estimated at 5%-10% [13,14,15]
Parents of children with PDD tend to be overly worried about risks for later-born children [14], often overestimating actual recurrence risks [13,16]

Summary

Introduction

Pervasive developmental disorder (PDD) has an uncertain etiology, no method of treatment, and results in communication deficiencies and other behavioral problems. Prenatal testing-related decision-making has been relatively well studied for Down’s syndrome and other congenital disorders, decision-making about subsequent pregnancies among mothers of children with PDD has been virtually ignored as a subject of study The reasons for this may include the fact that the etiology of these diseases remains largely unknown, making prenatal diagnosis impossible, and that the long period of time required for a firm diagnosis leads parents to plan second pregnancies before even becoming aware of their first child’s disability. It is precisely the nature of these difficulties that makes it crucial to understand the psychological burden and other factors experienced by this group when considering second pregnancies

Objectives

Methods

Results

Conclusion