School of Communication, Journalism and Marketing, Massey University, Manawatū campus, Palmerston North, Aotearoa, New Zealand.
New Zealand Down Syndrome Association, Auckland, Aotearoa, New Zealand.
J Appl Res Intellect Disabil. 2023 Mar;36(2):300-309. doi: 10.1111/jar.13059. Epub 2022 Dec 2.
Individuals with Down syndrome are particularly vulnerable to COVID-19 because they are recognised as significantly immunocompromised. Yet their voices regarding their lived experiences of pandemic lockdowns have not been sought or heard.
This study aims to describe the lived experiences of people with Down syndrome during the pandemic lockdowns in Aotearoa New Zealand to add evidence in order to inform systemic advocacy.
A mixed-methods approach positioned within an inclusive research paradigm was used, in which a group of self-advocates with Down syndrome co-designed a structured interview schedule and conducted 40 face-to-face interviews. Key themes were identified by using content analysis.
Despite the difficulties associated with lockdowns and participants not receiving their usual supports and having to make significant adjustments, they remained positive, adapted well, and demonstrated a high level of resilience and adaptability.
The findings add to the limited research on the lived experiences of people with Down syndrome during pandemic lockdowns. This research has given them a voice to contribute to policy, government initiatives, and service providers; particularly on issues around support during lockdown and staying connected with others.
唐氏综合征患者特别容易感染 COVID-19，因为他们被认为免疫功能严重受损。然而，他们对大流行封锁期间生活经历的声音尚未被关注或听到。
本研究旨在描述新西兰唐氏综合征患者在大流行封锁期间的生活经历，以提供证据，为系统倡导提供信息。
采用混合方法，置于包容性研究范式内，一组唐氏综合征的自我倡导者共同设计了一个结构化访谈计划，并进行了 40 次面对面访谈。通过内容分析确定主要主题。
尽管封锁带来了困难，参与者没有得到他们通常的支持，不得不进行重大调整，但他们仍然保持积极态度，适应良好，表现出高度的韧性和适应性。
这些发现增加了关于唐氏综合征患者在大流行封锁期间生活经历的有限研究。这项研究让他们有机会为政策、政府倡议和服务提供商发声；特别是在封锁期间的支持和与他人保持联系方面的问题。
