Data From the Development and Acceptability Testing of the Carers-ID Online Support Programme, 2021-2022

Linden, Mark (2023). Data From the Development and Acceptability Testing of the Carers-ID Online Support Programme, 2021-2022. [Data Collection]. Colchester, Essex: UK Data Service. 10.5255/UKDA-SN-856210

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.

Data description (abstract)

In order explore the experiences of family carers of people with profound and multiple learning disabilities and voluntary sector organisations during the COVID-19 pandemic, we conducted 38 focus groups – 6 voluntary sector and 32 carer (data includes 38 transcripts). There were a total of 24 participants in the voluntary sector focus groups and 126 in the carer focus groups. Participants were from Northern Ireland, Ireland, Scotland, England and Wales. Based on these findings and with the help of the co-design group, we developed the Carers-ID online support programme. To test the acceptability of the programme among family carers we conducted an online survey which was distributed to family carers. We received 70 responses to our survey (data includes SPSS data file), of which 10 participants conducted follow up interviews (data includes 10 transcripts).

Data creators:
Creator Name Affiliation ORCID (as URL)
Linden Mark Queen's University Belfast
Sponsors: ESRC
Grant reference: ES/W001829/1
Topic classification: Health
Project title: Impact of COVID-19 on family carers for profound and multiple learning disabilities (PMLD): Development of a support programme.
Grant holders: Mark Linden, Lynne Marsh, Edward McCann, Maria Truesdale, Stuart Todd, Michael Brown, Nathan Hughes
Project dates:
31 March 202131 December 2022
Date published: 09 Mar 2023 15:59
Last modified: 17 Mar 2023 09:56

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