KL Yam, CB Chow, JTF Lau, CM Yu

Abstract

Objective: This survey aimed at reflecting the health service for children with Down Syndrome in Hong Kong from the parents' perspective. Method: Ninety-eight questionnaires were collected from families with children aged 0-18 years old during the Annual Meeting of the Hong Kong Down Syndrome Association in 1999. Medical and allied health services, educational provisions, surveillance and assessment programmes were analysed. The utilisation pattern, referral time, follow up frequency and satisfaction ratings were reported. The necessity and accessibility of the services were ranked. Results: Utilisation of various services was reported. Most parents of Down Syndrome were satisfied with the current service provisions. Educational assistance and assessment service were regarded as highly necessary. Services provided by Physiotherapy, Occupational Therapy, Speech Therapy were perceived as necessary but difficult to access. This descriptive pilot study provided important information for consideration by health service providers in Hong Kong.

目的：本調查主要通過家長的視野反應患先天愚型綜合征的香港兒童的健康服務狀態。方法：在 1999 年的香港先天愚型綜合征年會上收集了 98 份 0-18 歲兒童的家庭問卷調查。分析了醫療及與其相關的健康服務，教育，監護以及評估計劃。本文報告了利用方式、治療安排、隨訪頻率和滿意率等。列舉了服務計劃的必要性和可行性。結果：報告了不同的服務機構的資料。多數患先天愚型兒童的家長對目前提供的服務感到滿意。獲教育的幫助和評估服務被認為是較高的需要。生理治療，職業性的治療，語言治療是必要的但難以評估。本項前沿性的研究為香港的健康服務工作者提供了重要的資料。