Table of Contents

HK J Paediatr (New Series)
Vol 2. No. 2, 1997

HK J Paediatr (New Series) 1997;2:176

Proceedings of Scientific Meeting

Breaking News to Parents with Down Syndrome Children

George Chiu, Ben Lui, Alison TAM, Edward Yau, Heidi Tong, CB Chow, CM Yu


HK J Paediatr (new series) 1997;2:175-186

Hong Kong Paediatric Society 35th Anniversary Scientific Meeting September 6,1997

Introduction : Most parents are shocked, confused and devastated when they learn that their newborn has Down syndrome. The initial period is often very traumatic and stressful. The present study aims to study the ways the parents were told, their changes in the adjustment process, availability of support and their responses towards the professional services they had received.

Methods and results : Thirty-five families with a Down syndrome child 2 years old or below were studied. Two methods of enquiry were used in the survey: (1) questionnaire to gather information relating to characteristics of the families and various aspects of the experience of the mother in the first two years of caring for the child; (2) interview on how the needs of a family with a Down member were met.

The immediate needs of parents are first to be communicated honestly about the child's condition in a compassionate and respectful manner preferably in the first week. Then they need factual information upon which they can make informed decision on all matters related to the child. They need lots of support and guidance in exercising their own ways of coping with the birth. The support from another parent with a Down syndrome child is most valuable. The need for information and support may extend over prolong period of time. A wide range of services is required to meet the needs of the child and the family. The services should be of good quality, easily accessible and available, well coordinated and continuous.

Most were capable of coping effectively with the adaptive demands, had demonstrated necessary mastery and control in their coping efforts, provided that their strengths and resources were recognized and developed through working together with professionals, and appropriate support and well-coordinated services were available.

Recommendations on how the news should be broken to family that their newborn baby is having Down syndrome will be discussed.

 
 

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