Family experiences of end-of-life care and caring in nursing homes in Ireland during COVID-19

COVID-19 highlighted the darker side of care. Research suggests that nursing home residents experienced rapid physical and psychological decline due to the social isolation created by visitation restrictions. For caregivers, the physical and emotional separation was also challenging because their core role as carers was misrecognised, as policy positioned them as ‘only visitors’. Our research explores through interviews and reflexive thematic analysis (RTA) the experiences of visitation restrictions of nine family carers in Ireland who lost family members in undignified deaths in nursing homes during the initial waves of the pandemic. Through RTA, we generated one core theme of ‘Commodified care during COVID-19: forgotten lives’, which details how care deteriorated in the absence of the invisible work of families, culminating in bad deaths and leading to activism for the reform of care, as well as recognition of the vital role of family (which we define broadly as family through blood, marriage or non-kin relations) in nursing home care. Our analysis indicates that care and caregiving do not end at death and that the relationship between participants and their deceased relatives is ongoing through efforts to reimagine how care at the end of life during pandemics could otherwise be. Recommendations are made for addressing the darker side of care made visible through visitation restrictions through policy that recognises and facilitates family carers’ role, listens to and seeks the perspectives of both residents and family in policy that impacts them, and challenges the reductions that occur through the current commodification of care.