Table_2_Support staff liaising effectively with family caregivers: Findings from a co-design event and recommendation for a staff training resource.docx

A high proportion of people with intellectual disabilities (ID) and autism spectrum disorder (ASD) are prescribed psychotropic medications such as antipsychotics, antidepressants etc., outside their licensed indications, primarily for the management of behaviors that challenge (BtC) in the absence of a psychiatric disorder. Examples of BtC are aggression to people and property or self-injury. BtC could be challenging to manage and may cause the person with ID/ASD and their caregivers distress, breakdown of community placement leading to hospitalization, and restrictive practices such as restraint or inappropriate medication use. Caregivers play a pivotal role in the prescribing process. However, many family caregivers feel that they have not been fully involved in the shared decision-making process about the care planning of their relatives with ID/ASD. To address the public health concern regarding the overuse of off-license prescribing in people with ID/ASD, we have recently developed a training programme called SPECTROM (Short-term Psycho-Education for Carers To Reduce OverMedication of people with intellectual disabilities) for direct care staff who support people with ID/ASD within community settings. We used co-production and a modified Experience-Based Co-Design (EBCD) method to develop SPECTROM, which involved a literature review, four focus groups and a co-design event day involving 26 stakeholders. Recommendations from the co-design event day were analyzed by a Programme Development Group (PDG) consisting of 21 stakeholders who made the final recommendations to the project team regarding the contents and the format of SPECTROM, which was finalized after receiving feedback from further 59 stakeholders. SPECTROM has web-based resources introduced through two core modules in face-to-face workshops/training. A small field test found SPECTROM was effective in improving staff's knowledge of psychotropic medications and attitude toward BtC and people with ID (p < 0.05). One of the 14 STOMP modules is “Effective liaison with family carers and advocates”. In this paper, we have presented data from the co-design event day recommendations for this particular module. The group recommended ways to improve collaborative working and effective shared decision-making with family caregivers and people with ID/ASD.

高比例的智力障碍（intellectual disabilities, ID）及孤独症谱系障碍（autism spectrum disorder, ASD）人群会被超获批适应症开具抗精神病药、抗抑郁药等精神药物，这类超处方用药主要用于在无精神疾病合并的情况下管控挑战性行为（behaviors that challenge, BtC）。挑战性行为的示例包括对他人及财物的攻击行为，或自伤行为。挑战性行为往往难以管控，可能会给ID/ASD人群及其照料者带来困扰，导致社区安置中断并需住院治疗，还可能催生约束措施、不恰当用药等限制性干预手段。

照料者在处方开具全流程中发挥着核心作用，但诸多家庭照料者反映，他们未能充分参与到其ID/ASD亲属的照护计划制定相关的共同决策流程中。为应对ID/ASD人群中超处方用药过度使用这一公共卫生问题，我们近期开发了一款名为SPECTROM（面向照料者的短期心理教育项目以减少智力障碍人群的过度用药，Short-term Psycho-Education for Carers To Reduce OverMedication of people with intellectual disabilities）的培训项目，面向在社区环境中为ID/ASD人群提供支持的直接照护人员。

本项目采用协同共创及改良版基于体验的协同设计（Experience-Based Co-Design, EBCD）方法开发SPECTROM，具体流程包括文献综述、4场焦点小组访谈，以及一场包含26名利益相关方参与的协同设计工作坊。协同设计工作坊的建议由21名利益相关方组成的项目开发小组（Programme Development Group, PDG）进行分析，该小组向项目团队提交了关于SPECTROM内容与形式的最终建议；后续又收集了59名利益相关方的反馈，最终敲定了SPECTROM的方案。

SPECTROM包含网络资源，通过面对面工作坊与培训中的两个核心模块进行讲授。一项小型现场预试验结果显示，SPECTROM可有效提升工作人员对精神药物的相关知识，以及其对挑战性行为与ID人群的态度（p < 0.05）。14个STOMP模块中的其中一个为“与家庭照料者及权益支持者开展有效联络”。

本文呈现了针对该特定模块的协同设计工作坊建议相关数据。工作组提出了优化与家庭照料者及ID/ASD人群的协作模式、提升共同决策有效性的具体方案。