Table_2_How do people with MND and caregivers experience a digital mental health intervention? A qualitative study.DOCX

ObjectiveWe urgently need to develop and evaluate more psychological interventions to support people with Motor Neurone Disease (MND) and caregivers. We used the person-based approach to develop a digital mental health intervention and conducted two studies to explore people’s experiences of using it.
MethodsIn Study 1, we conducted think-aloud interviews with 9 people with MND and 8 caregivers, and used findings to refine the intervention. In Study 2, 18 people with MND and 9 caregivers used the intervention for 6 weeks after which in-depth interviews were conducted. Data from both studies were combined and analysed using thematic analysis.
ResultsWe developed 3 main themes around intervention acceptability, engagement, and usefulness. Participants highlighted the importance of accessibility and realistic presentation of information and support. Tailoring and timing intervention use to suit own needs, preferences, and disease stage was also important. Participants used the strategies presented to develop a positive outlook and regain some control. They also faced some challenges using these strategies in the context of dealing with progressive loss.
ConclusionPeople with MND and caregivers can find digital mental health interventions useful. Intervention accessibility and flexibility are important for developing acceptable and engaging interventions for MND.

研究目标
我们亟需开发并评估更多用于支持运动神经元病（Motor Neurone Disease, MND）患者及其照护者的心理干预手段。本研究采用基于人群的方法开发一款数字化心理健康干预工具，并通过两项研究探索用户使用该工具的体验。

研究方法
在研究1中，我们对9名运动神经元病患者与8名照护者开展出声思维访谈，并基于研究结果对该干预工具进行优化。在研究2中，18名运动神经元病患者与9名照护者使用该干预工具为期6周，随后我们对其开展深度访谈。将两项研究的数据整合后，采用主题分析法进行数据分析。

研究结果
我们围绕干预工具的可接受性、使用参与度与实用性提炼出三大核心主题。参与者强调了信息与支持服务的可及性，以及信息呈现的真实性的重要性。根据自身需求、偏好与疾病阶段定制干预工具的使用方式与时机同样关键。参与者借助工具提供的策略树立了积极心态，并重新获得了部分掌控感；但在应对疾病进行性恶化的过程中，他们在使用这些策略时也面临了部分挑战。

研究结论
运动神经元病患者及其照护者可从数字化心理健康干预工具中获益。干预工具的可及性与灵活性，是开发适用于运动神经元病群体的高接受度、高参与度干预方案的关键要素。