Örebro University, Orebro, Sweden
CHILD research group, Jönköping University, Jonkoping, Sweden.
BMJ Open. 2024 Nov 1;14(10):e089135. doi: 10.1136/bmjopen-2024-089135.
The rising prevalence of autism spectrum disorder (ASD) among children poses significant challenges for healthcare services. Research has underscored the crucial role of children's involvement in their healthcare. However, due to the intricate nature of ASD, marked by communication and social interaction differences, healthcare providers face challenges in tailoring their services to accommodate these children. This project aims to explore the impact of two distinct needs assessment models on children's participation in the needs assessment process.
We will conduct a prospective observational study comparing responses from children subjected to two different needs assessment procedures: survey-based and meeting-based. Supplementary data will be collected from the children's parents/guardians and healthcare professionals. Data collection methods will include questionnaires, interviews and document analysis of individual habilitation plans. We aim to recruit 120 children aged 7-17 diagnosed with ASD but without intellectual disability, with 60 undergoing the survey-based needs assessment and 60 undergoing the meeting-based assessment. The primary outcome measure will be the perception of participation in the needs assessment procedure. Secondary outcomes will include the children's quality of life and mental health; the parents' knowledge of their child's strengths, abilities and special needs; and the parents' perception of the quality of collaboration with the healthcare team.
The study received ethics approval from the Swedish Ethical Review Authority on 4 March 2024 (reference number 2024-00227-01). All children and their caregivers will receive both verbal and written information about the study before being asked to provide written informed consent to participate. The findings will be disseminated through publication in peer-reviewed journals and presentation at conferences. Additionally, a popular science report summarising the data and its interpretation will be published.
NCT06381856.
自闭症谱系障碍（ASD）在儿童中的发病率不断上升，给医疗保健服务带来了重大挑战。研究强调了儿童参与医疗保健的重要作用。然而，由于 ASD 的复杂性，表现在沟通和社交互动方面的差异，医疗保健提供者在为这些儿童量身定制服务时面临挑战。本项目旨在探讨两种不同需求评估模式对儿童参与需求评估过程的影响。
我们将进行一项前瞻性观察性研究，比较两种不同需求评估程序（基于调查和基于会议）下儿童的反应。将从儿童的父母/监护人以及医疗保健专业人员处收集补充数据。数据收集方法将包括问卷调查、访谈和个别康复计划的文件分析。我们计划招募 120 名 7-17 岁被诊断为 ASD 但无智力障碍的儿童，其中 60 名接受基于调查的需求评估，60 名接受基于会议的评估。主要结局指标将是对需求评估过程的参与感。次要结局指标将包括儿童的生活质量和心理健康；父母对孩子的优势、能力和特殊需求的了解；以及父母对与医疗团队合作质量的看法。
该研究于 2024 年 3 月 4 日获得瑞典伦理审查局的伦理批准（编号 2024-00227-01）。在要求提供书面知情同意书参与研究之前，将向所有儿童及其照顾者提供关于研究的口头和书面信息。研究结果将通过在同行评议期刊上发表和会议上展示来传播。此外，还将发表一份通俗科学报告，总结数据及其解释。
NCT06381856。
