Sin Jacqueline, Henderson Claire, Woodham Luke A, Sesé Hernández Aurora, Gillard Steve
Population Health Research Institute, St George's, University of London, London, United Kingdom.
School of Psychology and Clinical Language Sciences, University of Reading, Reading, United Kingdom.
J Med Internet Res. 2019 Aug 6;21(8):e14374. doi: 10.2196/14374.
Psychosis, including schizophrenia, is the most common severe mental illness affecting 1% of the population worldwide. A large number of people provide long-term support and care for a relative with psychosis. Although psychoeducational interventions, especially those delivered through a face-to-face group format, have an established evidence base for improving the caregiving experience, well-being, and health outcomes, large-scale implementation and access remain limited. There is a demand for such provision to be made through the internet for greater flexibility and wider access.
This study aimed to integrate participatory research methodologies by the public, patients, and carers into the eHealth (electronic health) intervention design and build process to improve the product's usability and acceptability.
We adapted a structured eHealth intervention build method to include participatory research activities involving key stakeholders and end users to co-design and coproduce our intervention. An expert advisory group (EAG) comprising public involvement members led the formative design and build work using an agile build process. Carers independent from the study were consulted on the evolving drafts of the intervention prototype through focus group meetings. These results were fed back into the intervention build work continuously to ensure end users' input inform every stage of the process.
An EAG comprising individuals with lived experience of psychosis, carers, health care professionals, researchers, voluntary organization workers, and eLearning experts (n=14) was established. A total of 4 coproduction workshops were held over 1 year during which the alpha and beta prototypes were designed and built through the participatory research work. Alongside this, 2 rounds of focus group study with carers (n=24, in 4 groups) were conducted to seek consultation on end users' views and ideas to optimize the intervention design and usability. Finally, the EAG carried out a Web-based walk-through exercise on the intervention prototype and further refined it to make it ready for an online usability test. The final product contains multiple sections providing information on psychosis and related caregiving topics and interactive discussion forums with experts and peers for psychosocial support. It provides psychoeducation and psychosocial support for carers through the internet, promoting flexible access and individualized choices of information and support.
The participatory research work led to the coproduction of a eHealth intervention called COPe-support (Carers fOr People with Psychosis e-support). We believe the study methodology, results, and output have optimized the intervention design and usability, fitting the end users' needs and usage pattern. COPe-support is currently being tested for its effectiveness in promoting carers' health outcome through an online randomized controlled trial.
ISRCTN Registry ISRCTN89563420; http://www.isrctn.com/ISRCTN89563420.
精神病，包括精神分裂症，是最常见的严重精神疾病，影响着全球1%的人口。大量人员为患有精神病的亲属提供长期支持和照料。尽管心理教育干预措施，尤其是通过面对面小组形式提供的干预措施，在改善照料体验、幸福感和健康结果方面有既定的证据基础，但大规模实施和获取仍然有限。人们需要通过互联网提供此类服务，以获得更大的灵活性和更广泛的获取途径。
本研究旨在将公众、患者和照料者的参与式研究方法纳入电子健康干预设计和构建过程，以提高产品的可用性和可接受性。
我们调整了一种结构化的电子健康干预构建方法，纳入涉及关键利益相关者和最终用户的参与式研究活动，以共同设计和共同生产我们的干预措施。一个由公众参与成员组成的专家咨询小组（EAG）使用敏捷构建过程领导了形成性设计和构建工作。通过焦点小组会议，就干预原型的不断演变的草稿征求了与该研究无关的照料者的意见。这些结果不断反馈到干预构建工作中，以确保最终用户的意见贯穿于过程的每个阶段。
成立了一个由有精神病生活经历的个人、照料者、医疗保健专业人员、研究人员、志愿组织工作者和电子学习专家（n = 14）组成的专家咨询小组。在1年的时间里共举办了4次共同生产研讨会，在此期间通过参与式研究工作设计并构建了alpha和beta原型。与此同时，对照料者（n = 24，分4组）进行了2轮焦点小组研究，以征求关于最终用户的意见和想法，以优化干预设计和可用性。最后，专家咨询小组对干预原型进行了基于网络的预演练习，并进一步完善，使其准备好进行在线可用性测试。最终产品包含多个部分，提供有关精神病和相关照料主题的信息，以及与专家和同行的互动讨论论坛，以提供心理社会支持。它通过互联网为照料者提供心理教育和心理社会支持，促进信息和支持的灵活获取以及个性化选择。
参与式研究工作促成了一种名为COPe-support（精神病患者照料者电子支持）的电子健康干预措施的共同生产。我们相信该研究方法、结果和产出优化了干预设计和可用性，符合最终用户的需求和使用模式。目前正在通过一项在线随机对照试验测试COPe-support在促进照料者健康结果方面的有效性。
ISRCTN注册库ISRCTN89563420；http://www.isrctn.com/ISRCTN89563420 。
