A longitudinal study by researchers at UNSW Centre for Social Research in Health (CSRH) focuses on interviewing participants about their COVID-19 experience, how they are navigating recovery and adapting to new and changing physical capacities.
The research is part of the ADAPT project, an ongoing observational cohort study following people post-COVID-19 infection, led by investigators from Kirby Institute at UNSW and St Vincent’s Hospital Sydney. The study is the first to describe the impact of long Covid on the immune system through analysis in a laboratory setting.
Current estimates of long Covid prevalence are hindered by the absence of internationally accepted definitions. However, “the sheer number of COVID cases globally means it’s likely that millions of people are already experiencing long-term illness”, says research co-lead UNSW Scientia Associate Professor Kari Lancaster from CSRH.
“Patients’ accounts of their experiences of illness and care help direct our attention to the different kinds of support required in managing an uncertain and unknown recovery and give long Covid much-needed visibility,” she says.
“Our interdisciplinary approach has been both innovative and necessary, with qualitative research working in dialogue with the clinical study, to learn from patient experience and expertise.”
Patients’ lived experience matters
Over the last two years, the researchers have conducted three rounds of interviews with 39 participants, aged between 27 and 79 years old at the time of diagnosis, with a diverse range of experiences. The majority received a positive PCR test in the first wave of COVID-19 between March and April 2020 with 62 per cent of participants acquiring their infection locally.
One in five of participating patients was still experiencing symptoms beyond eight months, the research found.
“The acute phase of the illness can last up to two weeks, beyond that you potentially have a post-acute illness, and anything that lasts beyond 12 weeks is now called long Covid,” says Professor Gail Matthews from The Kirby Institute, who leads the clinical research with UNSW Scientia Professor Gregory Dore and Dr David Darley from St Vincent’s Hospital Sydney.
“There are probably several different syndromes that cause long Covid,” Prof. Matthews says. “There can be many underlying causes for somebody still being persistently symptomatic three months-plus after infection.”
A/Prof. Lancaster agrees: “Despite growing scientific attention, much about the longer-term clinical course of Covid-19 is uncertain. Undertaking qualitative research alongside the clinical study allows us to learn from patients’ lived experience.”
Together with UNSW SHARP Professor Tim Rhodes and Dr Mia Harrison from CSRH, A/Prof. Lancaster is conducting in-depth interviews on the social impact of long Covid, including disturbances to work and family life, and effects on bodily capacities and functioning.
“Our research looks at the multiple, entangled and emergent effects of long Covid on people’s lives as they navigate and make their recovery. It explores the implications of the social impact of long Covid for the provision of clinical care and social care,” A/Prof. Lancaster says.
Social understanding deepens other COVID research
Significantly, long Covid was itself “made known” through people’s lived experience, A/Prof. Lancaster says. “Long Covid has emerged as a patient-made term to describe the complex, unfolding and unpredictable effects and prolonged illness experienced by some people following SARS-CoV-2 infection.”
Worldwide, patients have reported on a “constellation of symptoms affecting multiple body systems” that are persistent and debilitating through mainstream and social media, online groups and subsequent patient-led clinical studies, she says. These symptoms include fatigue, shortness of breath, chest pain, muscular aches, palpitations, high temperatures, post-viral inflammatory reactions, cognitive dysfunction and psychological distress.
“It's incredibly important to have social science and qualitative research in the mix,” A/Prof. Lancaster says. “Sometimes there’s a tendency to think of these as purely biomedical or clinical problems when actually this is also about understanding the social and material effects in people’s lives.”
These personal accounts make long Covid ‘real’ and demonstrate the importance of maintaining interventions – social distancing, wearing a mask, and so on – to care for each other as a community, A/Prof. Lancaster says. “It's about understanding the broader pandemic context of why prevention matters and why vaccination is important and making that conversation public.”
With clinical care already overstretched, insights into the social support needed beyond the clinical, as well as understanding what works for people and the community resources and care already in existence is vital, she says.
“From other health social research, we know that the effect of illness is exacerbated by people's social and material circumstances. So, we’re thinking about how illness is experienced and how people’s lives are made precarious in the context of the pandemic.”
Stigma is a factor in accessing care
The commitment to learning from community knowledge and practices “in terms of how to negotiate safety, how to do prevention, how to look after each other”, was strongly demonstrated in the HIV epidemic, A/Prof. Lancaster says. “Social science played an integral role in reflecting back on biomedicine” and looking at these parallels helps guide the COVID response, she says.
Research within these fields has also shown the profound effect of stigma as a barrier to accessing care, A/Prof. Lancaster says. “There are some really important lessons … not to think of stigma as something out there, but as something that’s actually very much made and reproduced in everyday mundane practices.”
The researchers are also undertaking a parallel study examining the practices of healthcare workers involved in caring for patients with COVID-19. The interviews will examine how healthcare workers navigate symptom management, infectiousness, stigma, and physical and social isolation, initially and over time, as well as how they identify, implement and adapt practices of care in the context of the changing pandemic.
“There are some insightful accounts from the participants we've spoken to in the context of the COVID study about fear of infection and stigma, especially early in the pandemic when so little was known. These accounts demonstrate how particular practices of care were really reassuring, including through touch. The reassurance that comes from someone touching you and saying you are no longer infectious; you can't pass this on anymore,” A/Prof. Lancaster says.
This research sits within the Evidence-Making Interventions in Health program at CSRH that investigates how to optimise the translation and implementation of complex health interventions through adaptive approaches to evidence-making.
“Evidence is made in practices and is constantly being adapted. In situations of uncertainty and urgency, like we’ve seen in the COVID-19 pandemic, a key question is ‘what constitutes evidence-enough for action?’,” A/Prof. Lancaster says.
The program reflects critically on how knowledge and values are privileged or displaced within the ‘messy’ processes of evidence and knowledge-making that inform policymaking.
“The program seeks to develop more complex and adaptive ways of thinking about evidence translation and intervention implementation that reflect the equally dynamic and emergent experiences of life lived with Covid, and other illnesses, for more adept policy responses,” A/Prof. Lancaster says.
“While questions about evidence are thrown into relief in the context of emergency, we’re arguing that these are actually lessons for the everyday. If we thought in more adaptive ways and paid attention to local knowledge, then more responsive and reflexive intervention and implementation are possible.”