A pre-existing army of unpaid carers in England was effectively abandoned at the outset of the Covid-19 pandemic. Even before the pandemic, family, friends, and neighbours had increasingly moved from informally plugging the gaps to being the main source of support for people in need of social care in the community. For many, distancing rules were imposed in a way which severed all remaining links with professional care - links still awaiting reconstruction.
Moral distress was an unexpected theme in Andrea’s PhD research project which aimed to identify the barriers and facilitators to health and care communication in the presence of personal protective equipment (PPE) and forced denial of touch and proximity. For some participants, ‘do not travel, do not meet’ rules denied access to loved ones who needed support and exposed their nascent identities as carers - people who had previously underestimated their vital role when ‘just popping in’ to check on family and friends. Moral distress was intensified when Government adviser Dominic Cummings, who ignored these rules, was exonerated in the name of familial responsibility. This suddenly reframed obedience as perpetration of harm by abandonment.
People were locked down with vulnerable family members suddenly became their sole care provider. Simultaneously, their pre-existing support structures dissolved: betrayal in a time of need. A further complication arose for unpaid carers who had responsibility for multiple family members who lived separately and/or people who also had professional health or social care roles. They had to perpetrate a harm by choosing who to prioritise: patients or family? Father or daughter?
Where professional domiciliary care was available, some families’ perception of threat was sensitised by concerns over the availability and quality of PPE - made worse by its disproportionate distribution which favoured hospitals over community care providers - and the on- and off-duty distancing behaviours of those wearing it. This led to another form of ‘no-win’ decision-making: some families minimised risk by rejecting the professional care offer and assuming a burden beyond their capacities, while others took the chance of respite and felt guilt for exposing their loved one to increased risk.
Andrea’s work highlights the need to address the causes of hidden moral distress of ordinary people who are an essential part of the health and care infrastructure - even though they may not even acknowledge themselves as such - and the dilemmas faced by professional health and care workers who also have unpaid family-oriented responsibilities. Her work illuminates the ways in which values around care and wellbeing are held and violated in England, and the ongoing, unacknowledged, and cumulative consequences this is having on the country’s preparedness for the next societal crisis.
Andrea came to Durham University in 2018 after previous careers in the North-East of England as a regional journalist and a hospice massage therapist, during which time she completed an interdisciplinary Open University BSc (Hons) degree. At Durham she gained an MA in Research Methods (Anthropology), and a Medical Anthropology PhD investigating the effects of PPE and distancing on health and social care communication during the Covid-19 pandemic, and the consequences for those who experienced its effects. Andrea’s research interests are social justice, the embodied experience of communication in health and care, and the role of communication in disaster recovery and emergency preparedness.
SOURCES OF SUPPORT
Many of our webinars deal with topics that have the potential to evoke strong emotional responses. We are careful to attempt to balance the need for dialogue with the reality that these are difficult conversations to have - and therefore want to ensure that all our participants are aware of organisations that can provide help.
lifeline-international.com provides a directory of organisations that provide free confidential support from a real person. Once you're on that webpage, scroll down to the bottom, click on "Find a helpline" and then select your country. For immediate support in a crisis, choose the "suicide" category. There are also other relevant categories such as "Family" and "Grief and loss".