A longitudinal study conducted by researchers at the UNSW Center for Social Research in Health (CSRH) focuses on interviewing participants about their COVID-19 experience, how they navigate improvement, and adapt to new and changing physical capabilities.
The research is part of the ADAPT project, an ongoing observational cohort study following people after COVID-19 infection, led by investigators from the Kirby Institute at UNSW and St Vincent’s Hospital Sydney. The study is the first to describe the effect of long-term Covid on the immune system through analysis in a laboratory environment.
Current estimates of long Covid prevalence are hampered by the absence of internationally accepted definitions. But “the large number of COVID cases globally means that it is likely that millions of people are already experiencing long-term illness,” said UNSW Scientific Associate Professor Kari Lancaster of CSRH.
“Patients’ accounts of their experiences with illness and care help direct our attention to the various forms of support required to deal with an uncertain and unknown recovery and provide long-term 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 the patient’s experience and expertise.”
The patients’ lived experience matters
Over the past two years, researchers have conducted three rounds of interviews with 39 participants aged between 27 and 79 years at the time of diagnosis, with a wide range of experiences. The majority received a positive PCR test in the first wave of COVID-19 between March and April 2020, with 62 percent of participants getting their infection locally.
One in five of the participating patients still experienced symptoms beyond eight months, the research found.
“The acute phase of the disease can last up to two weeks, in addition to that you potentially have a post-acute disease, and anything that lasts beyond 12 weeks is now called long Covid,” says Professor Gail Matthews of The Kirby Institute, who heads it 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-term Covid,” says Prof. Matthews. “There can be many underlying reasons why someone is still persistently symptomatic three months plus after infection.”
A / Prof. Lancaster agrees: “Despite growing scientific awareness, much about the long-term clinical course of Covid-19 is uncertain. By conducting qualitative research alongside the clinical study, we can learn from patients’ lived experiences.”
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Together with UNSW SHARP Professor Tim Rhodes and Dr. Mia Harrison from CSRH, A / Prof. Lancaster conducts in-depth interviews on the social impact of prolonged Covid, including disturbances to work and family life, and effects on bodily capacities and function.
“Our research looks at the many, tangled and new effects of long-term Covid on people’s lives as they navigate and recover. It explores the implications of the social impact of long-term Covid on the provision of clinical care and social care,” A / Prof. Lancaster says.
Social understanding deepens other COVID research
It is essential that Covid himself became “known” for a long time through people’s lived experiences, A / Prof. Lancaster says. “Long Covid has emerged as a patient-generated term to describe the complex, unfolding and unpredictable effects and long-term illness that some people experience after SARS-CoV-2 infection.”
Worldwide, patients have reported a “constellation of symptoms affecting multiple body systems” that is persistent and disabling through mainstream and social media, online groups, and subsequent patient-led clinical trials, she says. These symptoms include fatigue, shortness of breath, chest pain, muscle aches, palpitations, high temperatures, post-viral inflammatory reactions, cognitive dysfunction and psychological disorder.
“It is incredibly important to have social science and qualitative research in the mix,” A / Prof. Lancaster says. “Sometimes there is a tendency to think of these as purely biomedical or clinical problems, when in fact it is also about understanding the social and material effects in people’s lives.”
These personal stories make long Covid ‘real’ and demonstrate the importance of maintaining interventions – social distancing, wearing a mask and so on – to take care of each other as a community, A / Prof. Lancaster says. “It’s about understanding the broader pandemic context of why prevention is important and why vaccination is important, and making that conversation public.”
With the clinical care already overloaded, insight into the social support needed beyond the clinical, as well as understanding what works for people and the community resources and care that already exist, is crucial, she says.
“From other health social research, we know that the effect of illness is exacerbated by human social and material conditions. So we think about how disease is experienced and how people’s lives are made uncertain in connection with the pandemic. “
Stigma is a factor in accessing care
The obligation to learn from social knowledge and practice “in terms of how to negotiate safety, how to do prevention, how to take care of 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 in these areas has also shown the profound effect of stigmatization as a barrier to access to care, A / Prof. Lancaster says. “There are some really important lessons … not to think of stigma as something out there, but as something that is actually largely made and reproduced in everyday worldly practices.”
The researchers are also conducting a parallel study examining the practices of healthcare professionals involved in the care of patients with COVID-19. The interviews will examine how healthcare professionals navigate after symptom management, infectivity, stigma, and physical and social isolation, initially and over time, as well as how they identify, implement, and adapt care practices in the context of the changing pandemic.
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“There are some insightful reports from the participants we spoke to in the COVID study on fears of infection and stigma, especially early in the pandemic, where so little was known. These reports show how special care practices were really reassuring, including “The reassurance that comes from someone who touches you and says that you are no longer contagious; that can not be passed on,” A / Prof. Lancaster says.
This research is part of the Evidence-Making Interventions in Health program at CSRH, which examines how to optimize the translation and implementation of complex health interventions through adaptive approaches to evidence production.
“Evidence is made in practice and is constantly being adapted. In situations of uncertainty and urgency, as we have seen in the COVID-19 pandemic, a key question is ‘what is evidence enough for action?'” Says A / Prof. Lancaster.
The program critically reflects on how knowledge and values are privileged or repressed within the ‘messy’ processes of evidence and science that inform about policy making.
“The program seeks to develop more complex and adaptive ways of thinking about evidence translation and intervention implementation that reflect the equally dynamic and new experiences of life lived with Covid and other diseases, for more skilled political responses,” A / Prof. Lancaster says.
“While questions about evidence are thrown into emergencies in emergencies, we argue that these are actually homework for everyday life. If we thought in more adaptive ways and were aware of local knowledge, then more responsive and reflective intervention and implementation is possible . “