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

Lead Research Organisation: Queen's University Belfast
Department Name: Sch of Nursing and Midwifery

Abstract

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.
 
Description The objectives of the research were:
• To explore the experiences of family carers of people with PMLD and voluntary sector organisations during the pandemic and suggest possible mechanisms of future support.
• To establish a co-design group of stakeholders with experience of PMLD during the pandemic.
• To develop a support programme with the help of our co-design group.
• To test the acceptability of the programme among family carers.
• To implement the programme for use across the UK and Ireland.
We have met all of our study objectives and have published two papers (attached to our Researchfish reporting) in relation to the first objective. The experiences of family carers were captured by conducting focus group interviews with voluntary sector organisations (n=5 focus groups of 24 participants) involved with family carers in addition to family carers themselves (n=32 focus groups of 126 participants). Our co-design group was of immense value in designing and guiding our research in the UKRI funded study. We continued to work with some of these charities and individuals in the second feasibility testing phase of the project. Our support programme (www.carers-ID.com) was successfully developed with the aid of our co-design group, research team and video production experts. The programme has been made live and is currently being tested for feasibility. As part of our UKRI funding we sought to test the acceptability, through quantitative and qualitative methods, of the programme. Our quantitative acceptability data, from 70 participants, showed a mean score of 75 out of a possible 88 suggesting a high level of acceptability. Our qualitative data showed a more nuanced picture of acceptability and identified areas where improvements could be made, certain strengths and limitations of the programme and the meaningful nature of what the programme had captured. Findings from our final acceptability testing paper are being prepared for publication. Lastly, the programme is available for use across the UK and Ireland in a limited capacity. This was to allow for some control over the material when testing for feasibility and ultimately effectiveness.
Exploitation Route We have secured funding from the Baily Thomas Charitable Fund and the Public Health Agency for Northern Ireland to test the feasibility of the programme. This work will be completed in March 2025. It is our intention to apply to the NIHR research programme for social care to fund an effectiveness trial of the carers-ID programme. Further, our work could be used by voluntary sector organisations as evidence of how family carers have been struggling and continue to struggle to find services to support their needs. Health and social care organisations could use our outcomes to seek additional funding for services from government in response to the needs identified in our work.
Sectors Communities and Social Services/Policy

Healthcare

Government

Democracy and Justice

Other
URL https://carers-id.com/
 
Description Our initial funding application has led to the development and award of two further funding applications. These are to cover the costs of conducting a randomised controlled feasibility study of the programme developed in the UKRI funding application. Funding was received from the Baily Thomas Charitable Fund and the Public Health Agency for Northern Ireland and amounted to £147,000. Work commenced in April 2023 and will complete in March 2025. In order to extend this work, our research team is currently developing a funding application to the NIHR Research Programme for Social Care to conduct an effectiveness trial of the programme. The outputs from this project were published in 2022 and 2023 and so there is limited available data on their impact at present. However, the programme has been visited by 1100 members of the public in the last year. In addition to the UK and Ireland, visitors have come from Finland, France, Austria, The Netherlands, USA and India. Our end of project dissemination event was attended by over 60 delegates and included academics, voluntary sector organisations, nurses, family carers and policy makers. The event was rated as 4.9 out of 5 with delegates stating that the work was "Engaging, bringing together the lived experiences of Carers, to inform further academic study and to develop practical solutions to the issues identified by them. Very informative and inspiring" (family carer); "Insightful, good representation from both academics and family carers" (Academic); "Lots of information and insight from videos and people speaking. Very beneficial" (Nurse).
First Year Of Impact 2023
Sector Education,Healthcare,Other
Impact Types Societal

Economic
 
Description HSC R&D Opportunity-Led Commissioned Research Awards
Amount £34,959 (GBP)
Funding ID COM/5717/22 
Organisation Public Health Agency (PHA) 
Sector Public
Country United Kingdom
Start 03/2023 
End 03/2025
 
Description Randomised controlled feasibility study and exploratory trial of the Carers-ID intervention: Supporting family carers' mental health following the COVID-19 pandemic.
Amount £97,600 (GBP)
Funding ID TRUST/VC/AC/SG/6324/9576 
Organisation Baily Thomas Charitable Fund 
Sector Charity/Non Profit
Country United Kingdom
Start 03/2023 
End 10/2024
 
Title Data from the development and acceptability testing of the Carers-ID online support programme. 
Description This anonymised dataset includes the consent forms, information sheets, qualitative date from the Carers-ID research project and the qualitative and quantitative data from acceptability testing of the programme. 
Type Of Material Database/Collection of data 
Year Produced 2023 
Provided To Others? Yes  
Impact The dataset has only been published in the last day or two and has yet to result in any impacts. 
URL https://doi.org/10.5255/UKDA-SN-856210
 
Description End of project dissemination event 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Our online, end of project dissemination event attracted 38 delegates who listened to three members of the research team presenting about the project's findings. As part of this event, the panel discussion included carers and academics with experience of intellectual disability and the COVID-19 pandemic. This event was evaluated with 18 respondents who gave it an average score of 4.9 out of 5 in regard to their levels of satisfaction.
Year(s) Of Engagement Activity 2023
 
Description Reviewing the evidence for web-based interventions for family carers of people with intellectual disabilities (poster presentation) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact This poster was presented at the Society for Social Medicine and Population Health Annual Scientific Meeting at the University of Exeter. This meeting was held from 7th to the 9th of September 2022. The poster was based on the findings from our systematic review which is awaiting publication.
Year(s) Of Engagement Activity 2022