Impact of COVID-19 on family carers for profound and multiple learning disabilities (PMLD): Development of a support programme.

关于COVID-19对严重和多重学习障碍（PMLD）患者家庭的影响的研究很少，但英格兰和威尔士59%的COVID-19死亡病例都是残疾人。最近2020年的一项研究表明，年龄在18-34岁之间的学习障碍者死于COVID-19的可能性是普通人群的32倍。我们选择将PMLD作为重度残疾人的典型情况，因为他们是最脆弱的人群。这一群体的脆弱性由于在需求增加时服务减少而加剧。英国护理人员的一项调查表明，五分之四的护理人员现在为他们的亲属提供更多的护理。虽然已经发现了有效的疫苗，但大流行期间服务的减少可能意味着这些家庭的社会护理前景不确定，从长远来看可能会发生变化。我们建议向英国和爱尔兰各地的家庭护理人员询问他们的经验，然后将利用这一新的学习来共同设计一个量身定制的支持计划。我们将通过在线焦点小组与利益相关者一起使用与护理人员和我们的志愿部门合作伙伴共同设计的问题来做到这一点。随后开发的在线方案将采用混合方法进行可接受性测试，并将在英国和爱尔兰各地实施。

There is a dearth of research on the impact of COVID-19 amongst families of people with profound and multiple learning disabilities (PMLD) and yet 59% of all COVID-19 deaths in England and Wales have been among people with disabilities. A recent 2020 study indicated that people with learning disabilities aged between 18-34 years are 32 times more likely to die of COVID-19 compared to the general population.We have chosen to focus on PMLD as an exemplar condition of people with severe disabilities as they comprise the most vulnerable population. The vulnerability of this group is exacerbated by a reduction in services at a time when needs have increased. A survey by Carers UK suggests that 4 out of 5 carers are now providing more care for their relatives. While effective vaccines have been discovered, the reduction of services during the pandemic may mean that the future of social care for these families is uncertain and subject to change in the longer term.We propose to ask family carers from across the UK and Ireland about their experiences and will then use this new learning to co-design a tailor-made support programme. We will do this by means of online focus groups with stakeholders using questions which have been co-designed with carers and our voluntary sector partners. The subsequently developed online programme will be tested for acceptability employing mixed methods and will be implemented across the UK and Ireland.