Title: Understanding and using family experiences of managing long Covid to support self care and timely access to services
Funder: Department of Health and Social Care

Abstract: The study aims to improve understanding of the experience of long Covid in households with children and young adults, from diverse socio-economic and ethnic minority backgrounds. This understanding will be used to develop public-facing resources to support self-care, co-produce theatre-based workshops for schools, support communications in long Covid consultations and inform policy makers. Background Most people with long Covid are managing at home; little is known about the impact of long Covid in families. Design Applied qualitative research, with integrated PPI, comprising i) in-depth interviews with thematic analysis ii) conversation analysis of recorded consultations with GPs iii) co-produced resources for the public, schools and healthcare. Objectives and methods understand how long Covid has been experienced by parents with young families and young people in family settings. Qualitative interviews with parents of younger children, teenagers and young people (maximum variation sample ~ 80 participants) collect and triangulate interview analysis, diaries and recorded consultations and interviews with GPs, on communication about long Covid ensure research relevance to people from seldom heard groups and ethnic minority groups, including young carers develop an experience-based online resource (for families, schools, policy makers, care providers) as part of Healthtalk.org. This well-established award winning site has, since 2001, published findings from over 110 studies in condition-specific sections, illustrated with video, audio and animated interview extracts. integrate the study findings with three sister studies: long Covid in Adults (Hunt et al) 1, Covid in diverse communities (Ziebland et al) 2 and experiences of Covid in ICU (Hinton et al)3 and other recently funded long Covid studies. Outputs We will work with specialists to develop theatre-based resources for schools and to support better patient-doctor communication, briefing papers and journal articles. We will integrate our interview findings with other long Covid studies where we may contribute to eg PROMs development.

Lay abstract: Aims to 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. 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 Healthtalk.org, integrated with our three sister projects, which are producing complementary sections. Healthtalk 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.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: INFECTION