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“如果房间里没有我的支持工作者……”:一项关于为神经发育障碍青年提供远程日常生活支持的多视角混合方法研究

'If I Don't Have My Support Worker in the Room…': A Multi-perspective Mixed Methods Study of Remote Daily Living Support for Neurodivergent Young Adults.

作者信息

Löthberg Maria, Wirström Eda, Meyer Jenny, Girdler Sonya, Bölte Sven, Jonsson Ulf

机构信息

Center of Neurodevelopmental Disorders (KIND), Centre for Psychiatry Research, Department of Women's and Children's Health, Karolinska Institutet & Stockholm Health Care Services, Region Stockholm, Stockholm, Sweden.

Department of Social Psychiatry and Individual Support, Municipality of Uppsala, Uppsala, Sweden.

出版信息

J Autism Dev Disord. 2024 Jun 5. doi: 10.1007/s10803-024-06425-z.

Abstract

PURPOSE

Information technology is increasingly being employed for providing support and interventions in disability and health service contexts. This study aimed to investigate service users' and support workers' perspectives on remote support in daily living for young adults with neurodevelopmental conditions.

METHODS

Using a convergent mixed methods approach, we integrated qualitative and quantitative findings from survey responses and focus groups. Young service users (aged 18 to 29) diagnosed with ADHD and/or autism (n = 35) and support workers (n = 64) from four municipalities in Sweden responded to a survey designed to tap into their lived experiences and views. The topic was explored further in focus groups with young service users (n = 7) and support workers (n = 3). Open-ended survey questions were analyzed using qualitative content analyses and complemented with information from the focus groups, while closed survey questions were summarized descriptively. Inferences were merged in a joint display.

RESULTS

While participants reported having access to digital devices, service routines for remote contact were not in place. Service users were more hesitant than support workers in endorsing remote support, expressing concerns that this approach would be inferior to in-person support (e.g., owing to miscommunications and insufficient social and emotional contact). Still, both groups expressed that remote contact may at times be a beneficial complement to in-person meetings, increasing accessibility and user choice.

CONCLUSION

Service providers planning to implement remote support elements should explore the demand, acceptability, and organizational readiness for this approach. Moving forward, user engagement will be crucial to meet individual preferences, values, and needs.

摘要

目的

信息技术越来越多地被用于在残疾和健康服务环境中提供支持和干预措施。本研究旨在调查服务使用者和支持工作者对为患有神经发育障碍的年轻人提供日常生活远程支持的看法。

方法

我们采用了一种融合式混合方法,整合了来自调查回复和焦点小组的定性和定量研究结果。来自瑞典四个城市的18至29岁被诊断患有注意力缺陷多动障碍(ADHD)和/或自闭症的年轻服务使用者(n = 35)以及支持工作者(n = 64)对一项旨在了解他们生活经历和观点的调查做出了回应。在与年轻服务使用者(n = 7)和支持工作者(n = 3)的焦点小组中进一步探讨了该主题。使用定性内容分析法对开放式调查问题进行分析,并辅以焦点小组提供的信息,而封闭式调查问题则进行描述性总结。推断结果合并在一个联合展示中。

结果

虽然参与者报告可以使用数字设备,但远程联系的服务常规尚未建立。与支持工作者相比,服务使用者在认可远程支持方面更为犹豫,他们担心这种方式不如面对面支持(例如,由于沟通不畅以及社会和情感联系不足)。不过,两组都表示远程联系有时可能是面对面会议的有益补充,可提高可及性和用户选择。

结论

计划实施远程支持元素的服务提供者应探索这种方法的需求、可接受性和组织准备情况。展望未来,用户参与对于满足个人偏好、价值观和需求至关重要。

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