Alice Lee Centre for Nursing Studies, Yong Loo Lin School of Medicine, National University of Singapore, Singapore, Singapore.
Division of Nursing, National University Hospital, Singapore, Singapore.
J Clin Nurs. 2021 Nov;30(21-22):3268-3280. doi: 10.1111/jocn.15836. Epub 2021 May 9.
To explore the experiences and support needs of parents of children with recently diagnosed autism spectrum disorder (ASD) in Singapore.
Raising a child with ASD is challenging for parents, especially in the initial period following the diagnosis. Limited studies have focused on parents' perspectives.
A qualitative descriptive design study.
Thirteen parents were recruited from a developmental and behavioural paediatric outpatient clinic of a tertiary hospital in Singapore from October-December 2018. Adult parents, who were primary caregivers of 2-10-year-old children diagnosed with ASD in the preceding 3 months to 2 years, were recruited. Semi-structured individual face-to-face interviews were conducted based on an interview guide. Thematic analysis was used to analyse the data. Consolidated Criteria for Reporting Qualitative Studies (COREQ) checklist was used for reporting.
Common themes were analysed using constant comparative method to generate results. Four themes emerged after 13 interviews: (1) adjusting psychologically, (2) changing lifestyle, (3) contending with hurdles to services and (4) needing informational, tangible and emotional support.
Findings suggested a need for more formal support networks, targeted resource platforms and accessibility of services to help support parents better after receiving a diagnosis of ASD in their child.
Enhancing current healthcare and social policies to improve the provision of standardised and targeted information to parents, establishing formal support networks, facilitating access to childcare services, and involving domestic helpers/nannies as dedicated caregivers and trainers could better support parents.
探索新加坡近期被诊断为自闭症谱系障碍(ASD)儿童的父母的经验和支持需求。
养育 ASD 儿童对父母来说是具有挑战性的,尤其是在诊断后的初始阶段。有限的研究集中在父母的观点上。
定性描述设计研究。
2018 年 10 月至 12 月,从新加坡一家三级医院的发育和行为儿科门诊招募了 13 名父母。招募的是主要照顾 2-10 岁儿童的成年父母,这些儿童在过去 3 个月至 2 年内被诊断出患有 ASD。根据访谈指南进行半结构化的个人面对面访谈。使用主题分析来分析数据。使用定性研究报告的统一标准(COREQ)清单报告结果。
使用恒定比较法分析常见主题以生成结果。经过 13 次访谈后出现了四个主题:(1)心理调整,(2)生活方式改变,(3)应对服务障碍,(4)需要信息、有形和情感支持。
研究结果表明,需要更多的正式支持网络、有针对性的资源平台和服务的可及性,以帮助父母在孩子被诊断出 ASD 后更好地得到支持。
增强当前医疗保健和社会政策,为父母提供标准化和有针对性的信息,建立正式的支持网络,为儿童保育服务提供便利,并让家庭佣工/保姆作为专门的照顾者和培训师,这将更好地支持父母。