Richard Hastings (co- Primary Investigator)
Chris Hatton (co-Primary Investigator)

Centre for Educational Development, Appraisal and Research, University of Warwick (Richard Hastings)
Department of Social Care and Social Work, Manchester Metropolitan University (Chris Hatton)

Primary Investigators: Prof Richard Hastings (University of Warwick), Prof Chris Hatton (Manchester Metropolitan University)

Co-Investigators: Dr Jill Bradshaw (University of Kent), Dr Sue Caton (Manchester Metropolitan University), Prof Andrew Jahoda (University of Glasgow), Dr Laurence Taggart (University of Ulster), Prof Stuart Todd (University of South Wales)

Partner organisations: Learning Disability Wales, All Wales Forum of Parents and Carers of People with Learning Disabilities, Scottish Commission for Learning Disability, Promoting A More Inclusive Society (PAMIS), Positive Futures, Mencap Northern Ireland, Learning Disability England, PMLD Link

Researchers: Dr Samantha Flynn (University of Warwick), Roseann Maguire (University of Glasgow), Dr Edward Oloidi (University of South Wales), Dr Rosie Kelly (University of Ulster)

NIHR Policy Research Programme NIHR204404

This 9-month project builds on a completed project that tracked the experiences of approximately 800 adults with learning disabilities through the COVID-19 pandemic. This UK-wide project interviewed about 500 adults with learning disabilities directly (by Zoom, Teams, phone, or other ways of being in contact remotely) and surveyed a further 300 family members or support workers of adults with learning disabilities who could not take part in an interview. The project heard from people at three time points: in the winter of 2020/21 (mainly during lockdown), in the spring of 2021 (when some public health protection measures had been eased), and in late summer 2021 (when most protection measures had been lifted).

The questions asked in the project were guided people with learning disabilities, family members and policymakers, with some changes in the questions over time depending on changing circumstances. We asked questions about: health, mental health, and wellbeing; new/worsening health problems; contact with health and social care services and professionals; COVID-19 infections, vaccinations and testing; paid jobs and volunteer work; getting online; contact with friends and family; bereavement. In the online surveys, we also asked family carers and support workers a small number of questions about their own health and wellbeing as carers.

This project will go back to the people, family carers and support workers across the UK who took part in the original project, almost all of whom said they would be happy to be contacted about taking part in a future wave. We will use interviews and online surveys again, using the same approaches that people will be familiar with, to find out how people and families are managing as the UK recovers from the COVID-19 pandemic. We will keep some of the central questions the same (for example, health and wellbeing; access to health and social care services) to find out people's experiences over time. As before we will proactively gain the views of policymakers, people with learning disabilities and family members in deciding which questions to keep, which questions to drop, and which new questions to add. We plan to go back to people in late summer/early autumn 2022.

In addition to this, we propose two specific new pieces of work in England only: 1) to recruit an additional booster sample of adults with learning disabilities from minority ethnic communities (100 interviews and 50 surveys); 2) to carry out in-depth qualitative case study research concerning up to 20 people with learning disabilities about their journeys through the pandemic.

As with the previous project, the proposed project will produce findings from the project quickly, and (in collaboration with partner organisations) in multiple formats to facilitate wide sharing and take-up of the findings.