Supporting necessary discussionsabout care during a COVID-19 outbreak
Advance care planning is a way to communicate personal values, wishes and preferences for future care. This information helps to ensure those involved in care decisions understand what is important to an individual should they be unable to share their wishes in the future.
Often only people facing a life-threatening condition consider advance care planning. However, during the COVID-19 period, we all face these issues, whether about ourselves or someone we care for. Furthermore, social distancing or shielding may impact choices and preferences about future care plans. It is therefore important to be proactive about advance care planning during this time.
This website has been designed to deliver information to family members of care home residents and care home staff to increase awareness and understanding of advance care planning. We hope this will support communication and shared decision-making.
This website is relevant during and after the COVID-19 pandemic, not just to those who have been diagnosed with COVID-19. We have included information about this resource below including some helpful information about the language used throughout this resource. For family member or care staff information you will find the relevant sections below.
Throughout these resources, we have tried to be consistent with the language we are using. The terms we use may be familiar to you already, or you might have words that you prefer, which more accurately reflect your circumstances. We recognise that this language is not universal, but we hope the terms we have used provide clarity.
We use the term advance care planning
You may use or prefer anticipatory care planning. There can be small differences between the two, but for simplicity, we use advance care planning throughout and intend this to be inclusive of anticipatory care planning.
We use the term in a COVID-19 outbreak
To refer to the COVID-19 pandemic.
We use the term care home
And intend it to be inclusive of nursing homes and residential homes.
We use the term family member
To refer to a family carer, relative, loved one or friend who is actively involved in decision-making to support the person living in a care home.
We use the term loved one or resident
To refer to the person living in a care home.
Background to this resource
This information has been developed as part of a project entitled ‘Necessary Discussions: Advance care planning for nursing homes in a COVID-19 outbreak’.
The work was co-funded by the Economic and Social Research Council (ESRC) as part of the UK Research and Innovation’s rapid response to COVID-19, and the Health and Social Care Research & Development Division (HSC R&D Division) of the Public Health Agency in Northern Ireland.
The aim of the Necessary Discussions project was to develop and evaluate online resources for both staff and family members relating to advance care planning during and after the COVID-19 pandemic.
Care home residents are typically older adults who, due to illness or impairment frailty, are particularly vulnerable to the virus.
This resource addresses the need for more information on advance care planning during and after the COVID-19 period.
The online training draws on key principles about advance care planning, building on recent research.
The information is informed by guidance about advance care planning that has been produced since the start of the COVID-19 pandemic.
Staying up to date
As you know, the advice and guidance regarding COVID-19 is constantly changing. The information provided here, and the resources that we have sign-posted to, are relevant to the best of our knowledge at this moment in time. This may change.
We will review its content and ensure it remains as accurate and timely as possible. These resources are a work in progress, and we welcome your feedback to ensure they are as helpful and useful as possible. The website was last updated in May 2022.
Meet the Team
This resource has been developed by Queen’s University Belfast, Lancaster University, Marie Curie and Dementia UK. This includes the following colleagues:
(Principal Investigator), Queen’s University Belfast
Professor Brazil holds the appointment of Professor of Palliative Care in the School of Nursing and Midwifery, Queen’s University Belfast. Professor Brazil’s research focuses on the structure, process, and outcomes in service delivery of quality care for family members and patients as they near the end-of-life. This work assists in the development, evaluation and translation of new and innovative interventions to improve access, quality and outcomes in this population.
Nancy is a Professor of Supportive and Palliative Care and Co-Director of the International Observatory on End of Life Care at Lancaster University. She is a nurse with an interest in how we care for people at the end of life. She has experience of conducting research in care homes, the community, hospices and hospitals. She has a particular interest in advance care planning and recently conducted a large European study about it in 6 countries.
Andrew is a researcher in the Division of Health Research at Lancaster University. His primary research interests are dementia and information-giving practices of formal health and social services. He has experience of undertaking research in these areas in the wider field of ageing, in relation to psychosocial support and formal health and social care services.
Marie Curie Research Fellow, University of Edinburgh
Anne is a Research Fellow in the School of Health in Social Science at the University of Edinburgh. She was Research Lead at Marie Curie Hospice Edinburgh for 10 years and has a strong track record in the design, evaluation and implementation of complex interventions for palliative care. Anne has a PhD in Psychology and has a particular interest in psychological interventions that support people to live well with advanced illness.
Queen’s University Belfast
Adrienne is a Research Manager with Maynooth University and Age Friendly Ireland, and former Research Fellow at Queen’s University Belfast. She previously worked clinically as an Occupational Therapist in acute elderly care and Dementia services. Her research interests focus on communication and decision-making for family members and patients within palliative care, in particular for individuals living with dementia.
Queen’s University Belfast
Gillian is a Lecturer in Chronic Illness in the School of Nursing and Midwifery, Queen’s University Belfast. Gillian has a BSc in Adult Nursing and currently has 14 years’ experience of healthcare research. She contributes to the teaching in undergraduate and post-graduate modules. Her field of research focuses on chronic illness, specifically on communication and decision-making for family members and the frail elders, in particular for individuals affected by dementia. She is also interested in enhancing the provision of support for family members focusing on the availability of peer support facilities and specifically online peer support interventions, developed through co-design.
Queen’s University Belfast
Gary is a lecturer (education) at Queen’s University Belfast. He is a registered nurse with significant clinical and academic experience in care home nursing, frailty, dementia, delirium & palliative care. Gary holds the title of Queen’s Nurse (QN) and was named as Nurse of the Year by the British Journal of Nursing in 2016 for his work in dementia palliative care within care homes.
Karen Harrison Dening
Karen has over 45 years’ experience in nursing, most of those being in dementia care in a variety of settings and contexts. For the past 15 years she has worked with Dementia UK and is now the Head of Research and Publications.
Queen’s University Belfast
Julie is a Research Fellow within the School of Nursing and Midwifery at Queen’s University Belfast. She has experience developing, implementing, and evaluating evidence-based interventions. Her research focuses on understanding and supporting health and well-being across the life course, including advance care planning for older adults.
Emily is a researcher within the Division of Health Research at Lancaster University. She has experience of undertaking multi-disciplinary dementia research, including work relating to care homes, advance care planning and end-of-life care.
Sandra is a researcher in the Division of Health Research at Lancaster University. She has experience of undertaking health research and evaluation in the fields of ageing and palliative care.
This resource has also been generously supported by contributions from an Expert Reference Group made up of academics, clinicians, members of the public and care home staff:
Professor of Primary Care & Public Health, Newcastle University
Associate Director, Marie Curie UK
Dr Eddie Santin
General Practitioner, Northern Ireland
Nurse Specialist for Care Homes in Northern Ireland
Consultant in Palliative Medicine, Marie Curie Edinburgh
Jo Hockley OBE
Macmillan Senior Research Fellow, Usher Institute, University of Edinburgh
Practice Development Facilitator/Care Home Lead, St Columba’s Hospice Care
Professional Lead Older People and Dementia Care, Royal College of Nursing
Anita Astle MBE
Managing director of Wrenhall Nursing home
Macmillan nurse and family member
Geriatric hospital consultant
Team lead -Nursing home REaCH
Relatives & Residence Association Director
If you would like to get in touch with us regarding this project or website, please send an email to:
This resource has been developed in partnership with: