End-of-life experiences under visitation restrictions during Covid-19: the case for care partner legislation
The Challenge
During COVID-19, In a rush to protect public health and the lives of people in nursing homes, blanket visitation bans were administered which effectively treated family of residents, as 鈥渙nly visitors鈥� rather than essential care partners (Egan et al. 2024). . Research suggests that whilst these bans were intended to help, they unwittingly impacted residents (through cognitive, physical, emotional decline and deprivation of liberty), families of residents and staff in negative ways (e.g. Normally et al. 2022).
Why the rate of death was so high deserves further and urgent investigation. This research, however, answers a question about the quality of the end-of-life experiences of these older adults. This question is important as we need to understand more about pandemic end-of-life experiences, so that we can support palliative care more positively in future pandemics, as well as enable the human rights of older adults in institutional care more broadly.
The Research
Dr. Sarah Robinson and Graham Gillespie (a former master鈥檚 student in the School of Applied Psychology) conducted the first qualitative study of end-of-life experiences of bereaved family members of nursing home residents (who died in care during the first three waves of the pandemic). The paper, published in a special issue of the International Journal of Care and Caring in May 2026, highlights the profound impact that blanket visitation bans had on residents (now deceased) through the voices of their remaining kin. As one participant stated indicating the wider policy environment that impacted older adults in care at this time: These people (residents) would not be shifted to hospital, they really weren鈥檛 worthy of living and another talking about her deceased mother: 鈥淪he didn鈥檛 like that she was locked in鈥� at one stage she said she felt a burden鈥� 鈥榃ouldn鈥檛 it be easier for everyone if they took them out the back and shot them?鈥欌�� she felt she had no quality of life.鈥�
Families also reported reduced standards of care, when staff were overwhelmed and family were absent as support. There was an overall negative impact on relatives when they were unable to connect, in worst instances families indicate their absence contributed to death through loneliness.
The Impact
This research has been disseminated widely through ISS21鈥檚 Care Visions workshops, Human Rights activists, the Irish Human Rights and Equality Commission, briefings at , the Covid Evaluation Committee, and with the Irish Hospice Association as well as being on the reading list of the BA degree in Social Science at UCC, informing teaching in this policy area.
The research was also developed as part of a multi-disciplinary approach with Applied Psychology and Human Rights Law students, and informed both undergraduate and postgraduate teaching in both disciplinary areas at UCC, and NUI Galway鈥檚 Centre for Human Rights, leading to an innovative collaboration.
The research is published in a Special Issue of the Journal of Care and Caring on the dark side of care in May 2026.
The research also influenced an initial policy response from the government to include a , even during a pandemic. It has been used by family advocacy groups in their ongoing quests for policy change and has been described as deeply meaningful by participants who engaged in the research process. The findings also support calls by human rights scholars and family activists for further legislative change, so that no resident will ever die alone again, (pandemic or not) and that the essential care role of family (in the broadest sense) can be formally recognized.
This research also aligns closely with the UN Sustainable Development Goals, particularly SDG 3 (Good Health and Well鈥慴eing), SDG 10 (Reduced Inequalities), and SDG 16 (Peace, Justice and Strong Institutions), by highlighting how policy decisions can unintentionally harm residents and carers when policy positions family as risk, rather than essential partners in care, and prevents connection between older adults in care and the people they love.
It strongly aligns with UCC鈥檚 Futures strategic goals. As one in three women, and one in four men will likely live in a nursing home in their lifetime (Liu, 2013; Sage Family Advocacy,2016), so this research also contributes to our collective social futures
For More Information
For more information about this research please contact Dr Sarah Robinson at sarah.robinson@ucc.ie or find our paper at the International Journal of Care and Caring
鈥淥ur research suggests that visitation restrictions meant families felt locked-out and residents felt locked-in leading to widespread deteriorations in health and wellbeing, and in worst instances, leading older adults to die alone. In two instances families were informed of their relatives鈥� deaths when they were contacted to pick up their belongings, and sometimes people went days or weeks without contact.鈥�
鈥� Dr Sarah Robinson, Lecturer, School of Applied Social Studies
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