Experiences of UK and Irish family carers of people with profound and multiple intellectual disabilities during the COVID-19 pandemic

Background: People with profound and multiple intellectual disabilities (PMID) have high and intensive support needs that ordinarily place significant strain on family carers. This was further heightened by the removal of many external supports during the COVID-19 pandemic. We sought to explore the experiences of family carers of people with PMID during the COVID-19 pandemic and understand what the longer-term impact might be on their lives. Methods Focus group interviews (n = 32) were conducted with family carers (n = 126) from the five countries of the UK and the Republic of Ireland. Participants were asked questions relating to their experiences of the COVID-19 pandemic, coping strategies, and challenges faced. All focus groups were conducted using an online platform. These were audio recorded, transcribed verbatim and analysed employing thematic analysis. Findings: Three main themes emerged from the data including (i) COVID-19 as a double-edged sword (ii) The struggle for support (iii) Constant nature of caring. These included 11 subthemes. (i) ‘COVID-19 as a catalyst for change’, ‘Challenges during COVID-19: dealing with change’, ‘Challenges during COVID-19: fear of COVID-19’, ‘The online environment: the new normal’ (ii) ‘Invisibility of male carers’, ‘Carers supporting carers’, ‘The only service you get is lip service: non-existent services’, ‘Knowing your rights’ (iii) ‘Emotional response to the caring role: Feeling devalued’, ‘Emotional response to the caring role: Desperation of caring’, ‘Multiple demands of the caring role.’ Conclusions The COVID-19 pandemic presented immense challenges to family carers of people with PMID but also provided some opportunities. Families had already struggled to receive many of the supports and services to which they were entitled to only to have these removed at the onset of the pandemic. The experiences of male carers have been largely absent from the literature with this research showing they want to be included in decision making and require tailored support services to meet their needs. Service providers should see the end of the As the direct threat from COVID-19 diminishes and the experiences of those who lived through come to the fore, there is a need to re-examine current models and provision of support to family carers to better meet their needs.