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

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.