Experiences of Students with Long COVID and Chronic Illness
Experiences of Students with Long COVID and Chronic Illness
Gemma Gray
11th November 2021
Project Support
Executive Summary
This project will explore experiences of students with chronic illness (CI) and/or Long COVID studying at Warwick. Of the estimated 332,300 UK students with a disability, 30,110 have a long-standing or hidden disability (Hubble and Bolton, 2021). Long COVID will be an important addition to this category, with a constellation of potential symptoms also associated with other chronic illnesses, such as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS; Wong and Weitzer, 2021). People with such energy-limiting conditions report a range of fluctuating symptoms that include physical/cognitive fatigue, pain and sensory issues (Hale, 2020). Given this profile of symptoms, students with long COVID are likely to have highly-individualised needs, spanning physical, mental health and academic support requirements.
While there is a canon of research into experiences of students with disability, work focused on students with CI is currently limited. However, recent research highlights that students with CIs feel under-supported and undervalued as members of their university communities (Hamilton et al., 2021). This is further complicated by the fluctuating nature of their symptoms which may set their support needs apart from students with other disabilities (Toller et al., 2020). This project will explore whether similar themes emerge for Warwick students with CIs (and/or with Long COVID) and will identify ways to create a more inclusive environment for these students.
Importantly for our project, students with CIs may have a unique perspective of the support needs associated with Long COVID, given the similarity in symptomology. Many students with CIs may start university with years of care management, self-advocacy and support-access navigation. Thus, a clear research focus will explore whether these experiences can guide support planning and implementation for students with long COVID.
We will use a participatory action approach, consulting with students with CI/Long COVID throughout the project. Job descriptions for our Research Assistant roles will support applications from students with CI/Long COVID, to ensure a “Nothing about us, without us” approach, and will be mindful of the potential impact of the additional workload on their condition. This consultation will ensure our surveys target key questions about the learning experience of students with CI/long COVID, focusing on condition management in different domains (i.e. physically, mentally, and within social and academic settings). This information will guide development of interviews/focus groups with students and highlight topic areas for additional staff surveys.
Project outcomes will include development of a self-help resource guide, specifically aimed at students experiencing Long COVID; this will focus on accessing support for physical, cognitive and mental health needs. General guidance for student with CIs will also be developed, signposting support and study skills for fluctuating energy levels and cognitive fatigue. We will also create ‘lived-experience’ videos of students, guided by input from students with CI input; this will likely include account of condition-management, student oriented advice and guidance for staff supporting students. Publications and conference presentations will be an additional valuable project outcome to support students across universities in the future.