COVID-19: Vulnerable Young People Living with Life-Limiting/Life-Threatening Conditions and their Families

A study of the non-intended consequences of epidemic control decisions.

Taking part in the project data collection has now stopped.

Are you a young person aged between 18-40 years living with a life-limiting or life-threatening condition?


Are you a family member of a young person with a life-limiting or life-threatening condition? 

If so, we would like to learn more about your life during the COVID-19 pandemic so that we can better support young people and families. We are interested in:

  • Understanding your needs and experiences
  • Developing information that would be useful to you
  • Exploring what needs to change so you are well-supported in the future


  1. Earle S, Blackburn M, Chambers L, Downing J, Flemming K, Hale J, Marston, H.R, et al. ‘Whose life are They Going to Save? It’s Probably Not Going to be Mine!’ Living With a Life-Shortening Condition During the Coronavirus (COVID-19) Pandemic: A Grounded Theory Study of Embodied Precarity. Qualitative Health Research. 2022;0(0). doi:10.1177/10497323221131692
  2. Sinason, V., Blackburn, M.C., & Dennison, P.H. (2020) ‘COVID-19: Addressing the wellbeing of residents living in an apartment block in the UK’. European Society of Trauma and Dissociation, 10 (2), August 2020, 23-26.
  3. Earle, S., et al. (2021). “I Could Almost Just Disappear, And Would Anyone Really Notice?” Precariousness And Precarity When Living With A Life-Limiting Or Life-Threatening Condition During The Coronavirus (COVID-19) Pandemic In The UK”. To be presented at the European Sociological Association Conference.

Project aims and objectives

  • We are carrying out this project to find out how changes to everyday life because of COVID-19 have affected young people with life-limiting or life-threatening conditions (LLTCs) and their families.
  • We are particularly interested in trying to establish what has happened as a result of the changes, and how this has affected people.

In particular, we aim to

  1. understand the needs of this extremely vulnerable group during the COVID-19 pandemic
  2. develop information and guidance to support young people with LLTCs and their families
  3. determine how policy should change now to reflect what is happening during the pandemic.

The project team includes young people with LLTCs as co-researchers, in partnership with Hospice UK, Together for Short Lives and the International Children’s Palliative Care Network (ICPCN). It will involve up to 25 people (young people with LLTCs and family members).

  • We plan to recruit people to the study by advertising for participants on our project website and on social media (e.g. Facebook and Twitter), by word-of-mouth and through people known to the project team.
  • We will interview people online using Zoom. We will support people to do this where they need it.
  • We will communicate regularly about our project and tell everyone what we find.

Project registration

As part of our commitment to patient and public involvement in research, this project is registered on the INVOLVE Research Project Database

Ethical approval

HREC approval: HREC/3595/Earle.

Project team members

  • Dr Sarah Earle, Principal Investigator, The Open University
  • Dr Maddie Blackburn, The Open University
  • Professor Julia Downing, International Children’s Palliative Care Network (ICPCN)
  • Professor Kate Flemming, University of York
  • Dr Hannah R. Marston, The Open University
  • Dr Lindsay O’Dell, The Open University
  • Dr Valerie Sinason, Institute for Psychotherapy and Disability
  • Jamie Hale, Young co-researcher
  • Lucy Watts, Young co-researcher with a life-limiting condition
  • Sally Whitney, Young co-researcher with a life-limiting condition

Project partners


All project documentation is available for download by clicking the links below


The Open University in partnership with Hospice UK, Together for Short Lives and the International Children’s Palliative Care Network (ICPCN)