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

You are invited to take part in a study

COVID-19: Vulnerable young people living with life-limiting or life-threatening conditions and their families: A study of the non-intended consequences of epidemic control decisions

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

OR

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

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:

Taking part in the project:

If you are interested in taking part or want more information, call Dr Sarah Earle at The Open University on: 01908 654260 or use the contact form below.

 

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

 

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

 

Publications:

  1. 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.

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