PDF(Pubmed)
Abstract：
BACKGROUND: To explore carers\' experiences of behavioural symptoms in Motor Neurone Disease (MND), before and after using the MiNDToolkit, a novel internet-based psychoeducational intervention to support management of behavioural symptoms (BehSymp) in MND. The study also investigated carers\' views and acceptability of MiNDToolkit.
METHODS: A qualitative process evaluation of carers engagement with, and acceptability of, the MiNDToolkit conducted using semi-structured interviews with carers (n = 11). All interviews were audio-recorded, professionally transcribed verbatim and analysed thematically.
RESULTS: Five themes were identified: (1) In the dark: carers\' experiences and reactions to BehSymp; (2) Others can see: the role of HCPs in identifying symptoms - and perceived opportunities for carers to receive support; (3) Shedding light: carers implementation and perceived impact of the MiNDToolkit content; (4) Acceptability and carers\' engagement with MiNDToolkit; (5) Future implementation. Carers\' experience of BehSymp was particularly distressing when symptoms were apparently out of context. MiNDToolkit appeared to support learning that BehSymp were part of MND. Content resonated with carers, who reported learning about the full picture of MND, which led to acceptance and use of newly learned strategies. Engagement with the platform was good, with varied input from HCPs. Greater and nuanced involvement from HCPs seem important to support management of BehSymp. Recommendations for a full-scale trial emerged, including adding a paper booklet to accompany the intervention and creation of new modules on emotional lability, changes in relationships, and transitioning to a care home.
CONCLUSIONS: MiNDToolkit was acceptable to carers overall. Recommended improvements should be actioned in a full-scale trial.
METHODS: A qualitative process evaluation of carers engagement with, and acceptability of, the MiNDToolkit conducted using semi-structured interviews with carers (n = 11). All interviews were audio-recorded, professionally transcribed verbatim and analysed thematically.
RESULTS: Five themes were identified: (1) In the dark: carers\' experiences and reactions to BehSymp; (2) Others can see: the role of HCPs in identifying symptoms - and perceived opportunities for carers to receive support; (3) Shedding light: carers implementation and perceived impact of the MiNDToolkit content; (4) Acceptability and carers\' engagement with MiNDToolkit; (5) Future implementation. Carers\' experience of BehSymp was particularly distressing when symptoms were apparently out of context. MiNDToolkit appeared to support learning that BehSymp were part of MND. Content resonated with carers, who reported learning about the full picture of MND, which led to acceptance and use of newly learned strategies. Engagement with the platform was good, with varied input from HCPs. Greater and nuanced involvement from HCPs seem important to support management of BehSymp. Recommendations for a full-scale trial emerged, including adding a paper booklet to accompany the intervention and creation of new modules on emotional lability, changes in relationships, and transitioning to a care home.
CONCLUSIONS: MiNDToolkit was acceptable to carers overall. Recommended improvements should be actioned in a full-scale trial.
摘要：
背景：为了探索照顾者对运动神经元病（MND）行为症状的体验，在使用MiNDToolkit之前和之后，一种新的基于互联网的心理教育干预，以支持MND中行为症状的管理（BehSymp）。该研究还调查了护理人员对MiNDToolkit的看法和可接受性。
方法：对护理人员参与的定性过程评估，和可接受性，MiNDToolkit使用对护理人员的半结构化访谈进行(n=11)。所有采访都是录音，专业逐字转录并进行主题分析。
结果：确定了五个主题：（1）在黑暗中：护理人员\'对BehSymp的经历和反应；（2）其他人可以看到：HCP在识别症状中的作用-以及护理人员获得支持的感知机会；（3）发光：护理人员实施和对MiNDkit内容的感知影响；（4）可接受和护理人员\'Toolkit的参与5。当症状明显脱离背景时，照顾者对BehSymp的经历尤其令人痛苦。MiNDToolkit似乎支持了解BehSymp是MND的一部分。内容引起了护理人员的共鸣，他报告了解了MND的全貌，这导致了对新学的策略的接受和使用。与平台的互动很好，来自HCP的不同输入。HCP的更大和细致入微的参与对于支持BehSymp的管理似乎很重要。出现了全面试验的建议，包括添加纸质小册子，以配合干预和创建有关情绪不稳定的新模块，关系的变化，过渡到养老院。
结论：MiNDToolkit总体上对护理人员是可接受的。建议的改进应在全面试验中采取行动。
方法：对护理人员参与的定性过程评估，和可接受性，MiNDToolkit使用对护理人员的半结构化访谈进行(n=11)。所有采访都是录音，专业逐字转录并进行主题分析。
结果：确定了五个主题：（1）在黑暗中：护理人员\'对BehSymp的经历和反应；（2）其他人可以看到：HCP在识别症状中的作用-以及护理人员获得支持的感知机会；（3）发光：护理人员实施和对MiNDkit内容的感知影响；（4）可接受和护理人员\'Toolkit的参与5。当症状明显脱离背景时，照顾者对BehSymp的经历尤其令人痛苦。MiNDToolkit似乎支持了解BehSymp是MND的一部分。内容引起了护理人员的共鸣，他报告了解了MND的全貌，这导致了对新学的策略的接受和使用。与平台的互动很好，来自HCP的不同输入。HCP的更大和细致入微的参与对于支持BehSymp的管理似乎很重要。出现了全面试验的建议，包括添加纸质小册子，以配合干预和创建有关情绪不稳定的新模块，关系的变化，过渡到养老院。
结论：MiNDToolkit总体上对护理人员是可接受的。建议的改进应在全面试验中采取行动。
