Understanding and using family experiences of managing long COVID to support self care and timely access to services

 Aims

a) improve understanding of how parents and young people from diverse communities have experienced long Covid
and care relations in the family

and

b) develop new resources for self care and improved communication.

© Pexels

Background

The coming months provide a critical opportunity to capture and learn from the experiences of the estimated 1.1
million people with long Covid, with transferable findings for the public, education and the NHS. Most people with long Covid are managing at home; little is known about the impact on families with children and/ or young adults living at home.

Design

In-depth interview study, conducted online with parents, teenagers and young people ( ~ 80 participants).

The research will help us to understand how a national, diverse sample of parents, their teenage and young adult
children, experience long Covid and caring in the family context (including those disrupted and reshaped due to the pandemic).
We will ask about how they cope (or struggle to), their experience of communicating with doctors and others, approaches to self-care and treatment and (for some) recovery, return to work or education/training, and their ideas about how communication, services and community support could be improved.

Working with our PPI contributors on the design, conduct and application of the research we will make the research relevant to people from seldom heard groups, including young carers.

Outputs

We will develop an experience-based online resource (for families, schools, policy makers, care providers) as part of HEXI.ox.ac.uk, integrated with our three sister projects, which are producing complementary sections. The HEXI - Health Experience Insights project has 20 years’ experience of publishing similar condition-specific sections, illustrated with video, audio and animated interview extracts.
We will work with specialists to develop a theatre-based resource for schools and another to support better patient-doctor communication, and journal articles and contributions to allied long Covid studies.

Funded by: NIHR £557,674

Lead investigator: Professor Sue Ziebland