Developing a community to mitigate caregiver burden in inherited retinal diseases using AI labelled structured and unstructured data

该项目涉及为遗传性视网膜疾病(IRD)患者的护理人员创建一个在线社区。患有IRD的人会失明和失明。通常情况下，这种疾病表现为年轻人，尽管它可能会影响老年人。家人和朋友为这些患者提供的大量支持都是无偿的。由于它影响的是年轻人，而且不是一种致命的疾病，因此需要终生护理，通常是由父母或年长的亲属照顾。这种照顾通常是无偿的，与有偿工作和责任相冲突，并导致内疚、压力、抑郁和心理问题。在线社区将允许照顾者与他人交流，分享他们经历的问题和成功。与专业照顾者不同，无偿照顾者没有时间休息，没有专业课程，也没有高级照顾者/经理来倾诉问题。与患者不同的是，他们没有全科医生或医疗保健专业人员可以直接解决他们的问题。这意味着照料者遭受的许多问题都是隐藏的，没有得到解决。护理员小组是有帮助的，但需要请假护理或带薪工作。匿名互联网论坛很有帮助，因为它们更容易获得--然而，回复的质量和及时性并不一致。回答没有经历过照顾者负担的人不太可能提供有用的建议。该项目将成为一个更丰富的社区，用户可以通过看到其他人的“负担分数”来自我限定回应，这样用户就可以选择将他们的注意力分配给与自己情况相似的人。

The project involves creating an online community for carers of people with inherited retinal disease (IRD). Persons with IRD suffer from vision loss and blindness. Often, the illness manifests itself as a young adult, although it can affect people in older age. Family and friends provide a great deal of support for these patients are unpaid. As it affects younger people and is not a fatal disease, will result in the necessity of lifetime care, often from parents or older relatives. This care is usually unpaid, conflicts with paid work and responsibilities and results in guilt, stress, depression and psychological problems.The online community will allow carers to communicate with other and share problems and successes that they experience. Unlike professional carers, unpaid carers do not have the luxury of taking time off, have professional courses or have senior carers/managers to unburden issues. Unlike patients, they do not have GPs or healthcare professionals who can directly solve their problems. This means that many issues that carers suffer are hidden and are unresolved. Carer groups are helpful but require taking time off care or paid work. Anonymous internet forums are helpful as they are more accessible - however, the quality and timeliness of responses are inconsistent. A person replying who has not been through the burden of being a carer is less likely to provide useful advice. The project will a richer community where users are self qualify responses by seeing other peoples 'burden score' so that users can choose to assign their attention to people in similar situations to themselves.