G Chiu, CB Chow, A Tam, B Lui, E Yau, H Tong, CM Yu

Abstract

Thirty-five families with a Down syndrome child aged two years or below were studied by (1) using a standard questionnaire to gather information relating to characteristics of the families and various aspects of experience of the mother in the first two years of caring for the child; and (2) semi-structured interview on how they respond and adapt to the new Down member and (3) the impact on marital and family life of mothers. The immediate response was one of disappointment and sadness. Most reported a loss of interest in daily routines (91%), great stress (82.8%), feelings of guilt (66%) and shame (51%). The immediate needs of parents were to be communicated honestly about the child's condition in a compassionate and respectful manner preferably in the first week. At birth, about 30% of parents were not willing to look for information about Down syndrome and most (67%) were not ready to inform close family relatives or friends. The most helpful resources for them to come to terms with the child were their own spouses (54%), followed by self (23%) and parents from The Hong Kong Down Syndrome Association (20%). They needed factual information upon which they could make informed decision on all matters related to the child. Despite the great stress experienced by the families, most were able to cope effectively with the adaptive demands and had demonstrated mastery and control in their coping efforts. About 22% of parents indicated experienced family disharmony or loss of job because of the child but 77% of family indicated the importance of spouses support and that they would be able to face challenges with more strength. These strengths and resources need to be recognized and developed through working together with professionals. A wide variety of well-coordinated, easily accessible services were required to meet the needs of the child and the family. Lots of support guidance was needed in exercising their own ways of coping with the birth. The need for information and support might extend over prolonged period of time.