ALT Paper title and authors: MacArtney, J.I., Eccles, E., Fleming, J., Grimley, C., Dale, J., Almack, K., Mayland, C., Mitchel, S., Driscoll, R., Hammond, R., Tatnell, L., Roberts, L. (2024) Pandemic narratives in stories about hospice palliative care: The impact of Covid-19 upon ideals of timely, holistic care and quality of life. SSM - Qualitative Research in Health

ALT Abstract: Findings: We identified four ‘pandemic narratives’ (reaction; revision; resilience; (re)normalisation) in the participants’ accounts of hospice palliative care support in the first two years of the pandemic. In each narrative we explore how Covid-19 and the associated pandemic guidance affected what quality of life was understood to be; how what was considered to be timely care could change during the palliative care journey; and, how different ideas of holistic care were emphasised as the hospice and wider healthcare context changed. Conclusion: This is the first-time stories about the first two-years of the Covid-19 pandemic from hospice patients, carers, staff and senior managers have been analysed together. We identified how the pandemic brought an existential challenge to ideas of what hospice palliative care is and could be. Our findings suggest that ‘living with covid’ will continue to affect hospice palliative care’s ideals.

ALT Screenshot of blog titled "Does palliative care have a problem with…'the c-word'?" with take home messages: (1) Hospice staff are still struggling with the emotional implications of working through the emergency period and foreground ways of getting back to pre-2020 “normal”, but also recognise there is a ‘new normal’ that includes COVID affecting patients’ amount and quality of life left, which can get pushed to the background. (2) This tension reflects the wider “living with COVID” approach in healthcare, which assumes people have time and capacity to recover from infections. (3) The uncertainty staff expressed suggests that hospice palliative care needs to engage in more explicit reflection on what ways of mitigating COVID-19 best fulfil a core value of promoting quality of life left.