一個人頂唔住：研究整理自閉症孩子家長覺得「邊度有人撐、邊度好孤單」 When One Person Cannot Carry It All: What Research Says About Where Parents of Autistic Children Feel Supported and Where They Feel Alone

作者 Byline：周Sir／chausir.com

本文由 AI 協助整理公開資料。 This article summarises public research with AI assistance.

1. 呢份研究做咗啲咩 ｜ What the study looked at

中文

馬來西亞團隊 Gao 同 Drani，2025 年 5 月喺《Sage Open》發表一篇質性系統性回顧，整理由 2013 至 2023 年以英文發表、探討自閉症孩子家長社會支援經驗嘅質性研究。團隊喺 PsycInfo、PubMed、Web of Science 同 Scopus 搜尋，最後納入 18 項研究，多數整體質素評為偏高，並用主題合成同 GRADE-CERQual 整理信心程度；回顧已於 PROSPERO 登記。[1]

English

A Malaysian team (Gao and Drani) published a qualitative systematic review in May 2025 in Sage Open. They synthesised English-language qualitative studies from 2013 to 2023 on the social support experiences of parents of autistic children. The team searched PsycInfo, PubMed, Web of Science and Scopus, and included 18 studies. Most were rated as high overall quality. They used thematic synthesis and GRADE-CERQual to describe confidence in the findings. The review is registered on PROSPERO. [1]

2. 研究見到咩關聯 ｜ What links the review found

中文

研究發現，好多家長覺得來自家庭、朋友、社區同相關服務單位嘅情緒支援唔夠，容易覺得冇人真正聽得明。社會排斥同對殘疾嘅污名會加重壓力，雖然宗教信仰有時帶來正向力量。家長亦面對服務有限、經濟負擔、政策支援不足，以及難搵到實用、一致嘅資訊。同儕支援可以有幫助，但有時夾雜負面回饋、建議互相矛盾同唔穩定。

作者綜合指出，社會支援缺口同家長壓力、孤立感相關。以上係對家長口述同質性文獻嘅整理，唔代表某一種支援一定帶來某一結果，亦唔係單一方案成效比較。[1]

English

The review found that many parents felt emotional support from family, friends, the community and related service units was not enough, and they often felt that nobody truly understood them. Social exclusion and stigma around disability added pressure, although religious beliefs sometimes offered a positive force. Parents also faced limited services, financial strain, weak policy support, and difficulty finding practical, consistent information. Peer support could help, but it sometimes mixed in negative feedback, conflicting advice and instability.

The authors conclude that gaps in social support are associated with parental stress and a sense of isolation. These are findings from parents' own accounts and qualitative literature. They do not show that any one kind of support always leads to any one result, and they are not a comparison of programme outcomes. [1]

3. 讀研究時要留意 ｜ Reading the findings with care

中文

呢篇回顧講嘅係家長主觀經驗同質性整理，唔係因果，亦唔係用嚟判斷個別家庭。感到孤獨唔等於家長唔夠努力。納入研究來自多個國家同制度，多數唔係香港樣本，家庭同社區文化未必一樣，只可以作參考。[1]

English

This review is about parents' lived experiences and a qualitative synthesis. It is not about cause and effect, and it is not a way to judge any one family. Feeling alone does not mean a parent is not trying hard enough. The included studies come from many countries and systems, and most are not Hong Kong samples, so family and community culture may differ. The findings are a reference only. [1]

4. 香港家長可以點留意 ｜ Small things Hong Kong parents can notice

中文

香港家長成日要同時應付學校、門診排期、訓練同親戚朋友嘅眼光，好容易覺得「我講完都冇人真正明白」。呢篇回顧提醒：情緒支援、資訊同政策配套往往唔齊，孤獨感可以同呢啲缺口一齊出現。

日常可以試吓：寫低最想人幫手嘅三樣，例如接放學、聽你講兩句、一齊睇資料；主動搵同樣處境嘅家長群組，但要保留篩選權，唔使接收所有負面傾訴；同學校講清楚「邊啲支援最實際」。

喺 CRP（Communication, Relationship, Parenting）嘅角度，家長亦需要被聽同被撐：關係唔止係親子之間，亦包括屋企同社區點樣一齊行。研究只係參考，每個家庭節奏唔同。如長期覺得孤立或者壓力好大，可以向學校特殊教育需要統籌、家教會或相關服務單位查詢。如孩子或家長出現持續情緒困擾、應付唔到日常，或者有自我傷害念頭，可打 999 或情緒通 18111。

English

Hong Kong parents often juggle school, clinic waiting lists, training schedules and the eyes of relatives and friends, and it is easy to feel that "even after I explain, nobody really gets it". This review is a reminder that emotional support, information and policy supports are often incomplete, and loneliness can show up alongside those gaps.

In everyday life, try writing down the three kinds of help you most want, for example school pick-up, someone who will listen for a few minutes, or looking at information together. You can look for parent groups in a similar situation, but keep the right to filter, and you do not have to take in every negative share. Tell the school clearly which supports are most practical.

From a CRP (Communication, Relationship, Parenting) point of view, parents also need to be heard and held up: relationship is not only between parent and child, but also how home and community walk together. The research is a reference only, and every family has its own pace. If isolation or stress stays high for a long time, parents can ask the school's special educational needs coordinator, the parent-teacher association or a relevant service unit. If a child or parent has ongoing emotional distress, cannot cope with daily life, or has thoughts of self-harm, call 999 or the 24-hour Mental Health Support Hotline 18111.

資料來源 ｜ Sources

1. Gao, X., & Drani, S. (2025). Social support experiences in parents of children with ASD: A qualitative systematic review. Sage Open, 15(2). https://doi.org/10.1177/21582440251336174

免責聲明 ｜ Disclaimer

教育資訊，非診斷或醫療建議。 Educational information, not a diagnosis or medical advice.

周Sir 嘅講座同文章屬家長教育，不提供診斷、評估或治療，亦不提供醫療或用藥建議；如有需要，請諮詢合資格專業人士。

Chau Sir's talks and articles are parent education. They do not provide diagnosis, assessment or treatment, and do not provide medical or medication advice. If needed, please consult a qualified professional.