Impact of the COVID-19 pandemic on family carers of those with profound and multiple intellectual disabilities: Perspectives from UK and Irish Non-Government Organisations.

Background: Family carers of people with profound and multiple intellectual disabilities (PMID) experienced a reduction in healthcare services due to the COVID-19 pandemic. Many subsequently turned to Non-Government Organisations who worked to support families. However, little research has sought to capture the experiences of family carers or identify effective interventions which might support them. To address these concerns we explored the views of Non-Government sector workers across the UK and Ireland who supported families people with PMID during the COVID-19 pandemic. We also sought to explore their views on the characteristics of online support programmes for family carers. Methods: : This study employed a qualitative design using focus groups with participants (n=24) from five Non-Governmental Organisations across the UK and Ireland. Interview schedules included questions on challenges, supports, coping and resources which helped during lockdown restrictions. Focus groups were held online, were audio recorded and transcribed verbatim. The resulting transcripts were pseudonymised and subjected to thematic analysis. Findings: Four themes were identified (i) ‘mental health and well-being’, (ii) ‘they who shout the loudest’, (iii) ‘lack of trust in statutory services’ and (iv) ‘creating an online support programme’. Mental health and well-being emerged as the largest theme and included three subthemes named as ‘isolation’, ‘fear of COVID-19’ and ‘the exhaustion of caring’. Conclusions: : The COVID-19 pandemic has increased the vulnerability of family carers who were already experiencing difficulties in accessing services and supports for their families. While Non-Government Organisations have been a crucial lifeline there is urgent need to design services, including online support programmes, in partnership with family carers which adequately address their needs.