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

关于新冠肺炎对严重和多重学习障碍患者家庭的影响的研究很少，然而在英格兰和威尔士所有死于新冠肺炎的人中有59%是残疾人。2020年的一项最新研究表明，年龄在18-34岁之间的学习障碍者死于新冠肺炎的可能性是普通人群的32倍。我们选择关注PMLD作为严重残疾人群的典范，因为他们是最脆弱的人口。在需求增加之际，服务减少加剧了这一群体的脆弱性。英国护工协会的一项调查显示，五分之四的护理者现在为亲属提供更多照顾。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为这些家庭提供的社会护理的未来不确定，从长远来看可能会发生变化。我们建议询问英国和爱尔兰各地的家庭护理人员他们的经验，然后将利用这一新的学习来共同设计一个量身定做的支持计划。我们将通过与利益攸关方在线焦点小组的方式来做到这一点，这些问题是与护理人员和我们的志愿部门合作伙伴共同设计的。随后开发的在线课程将采用混合方法进行可接受性测试，并将在英国和爱尔兰实施。

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.