Hidden toll: examining the social costs of Long Covid will improve prevention, treatment and care
Centre for Social Research in Health
Qualitative research into Long Covid will help us better understand its impact on human bodies, health care and social worlds.
New research into the social dimensions of Long Covid offers invaluable insights for its prevention, treatment and care. The longitudinal study focuses on storied accounts of participants鈥 embodied experience of COVID-19, how they are navigating recovery and adapting to new and changing physical capacities.
Current estimates of Long Covid鈥檚 prevalence are hindered by the absence of internationally accepted definitions, however 鈥渢he sheer number of COVID cases globally means it鈥檚 likely that millions of people are already experiencing long-term illness,鈥 says qualitative research co-lead 麻豆社madou Scientia聽Associate Professor Kari Lancaster from 麻豆社madou鈥檚 Centre for Social Research in Health (CSRH).
鈥淧atients鈥 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,鈥 she says.
鈥淥ur 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.鈥
The research is part of the following people post-COVID-19 infection, led by investigators from Kirby Institute at 麻豆社madou and St Vincent鈥檚 Hospital Sydney. The study is on the immune system through analysis in a laboratory setting.
One in five of participating patients was still experiencing symptoms beyond eight months, the research found. 鈥淭he 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,鈥 says Professor Gail Matthews from The Kirby Institute, who leads the clinical research with 麻豆社madou鈥檚 Scientia Professor Gregory Dore and Dr David Darley from St Vincent鈥檚 Hospital Sydney.
鈥淭here are probably several different syndromes that cause Long Covid,鈥 Prof. Matthews says. 鈥淭here can be many underlying causes for somebody still being persistently symptomatic three months-plus after infection.鈥
A/Prof. Lancaster agrees: 鈥淒espite 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鈥 lived experience.鈥
Together with SHARP Professor Tim Rhodes and Dr Mia Harrison from CSRH, A/Prof. Lancaster is conducting in-depth interviews on Long Covid鈥檚 social impact, including disturbances to work and family life, and effects on bodily capacities and functioning.
鈥淥ur research looks at the multiple, entangled and emergent effects of Long Covid on people鈥檚 lives as they navigate and make their recovery. It explores the implications of Long Covid鈥檚 social impact for the provision of clinical care and social care,鈥 A/Prof. Lancaster says.
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% of participants acquiring their infection locally.
The research recognises people鈥檚 embodied expertise
Significantly, Long Covid was itself 鈥渕ade known鈥 through people鈥檚 lived experience, A/Prof. Lancaster says. 鈥淟ong 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.鈥
Worldwide, patients have reported on a 鈥渃onstellation of symptoms affecting multiple body systems鈥 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.
鈥淚t's incredibly important to have social science and qualitative research in the mix,鈥 A/Prof. Lancaster says. 鈥淪ometimes there鈥檚 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鈥檚 lives.鈥
These personal accounts make Long Covid 鈥榬eal鈥 and demonstrate the importance of maintaining interventions 鈥 social distancing, wearing a mask, and so on 鈥 to care for each other as a community, A/Prof. Lancaster says. 鈥淚t's about understanding the broader pandemic context of why prevention matters and why vaccination is important and making that conversation public.鈥
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.
鈥淔rom other health social research, we know that the effect of illness is exacerbated by people's social and material circumstances. So, we鈥檙e thinking about how illness is experienced and how people鈥檚 lives are made precarious in the context of the pandemic.鈥
The commitment to learning from community knowledge and practices 鈥渋n terms of how to negotiate safety, how to do prevention, how to look after each other,鈥 was strongly demonstrated in the HIV epidemic, she says. 鈥淪ocial science played an integral role in reflecting back on biomedicine. 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, she says. 鈥淭here are some really important lessons 鈥 not to think of stigma as something out there, but as something that鈥檚 actually very much made and reproduced in everyday mundane practices.鈥
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.
鈥淭here 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.鈥
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.
鈥淓vidence is made in practices and is constantly being adapted. In situations of uncertainty and urgency, like we鈥檝e seen in the COVID-19 pandemic, a key question is 鈥榳hat constitutes evidence-enough for action?鈥,鈥 A/Prof. Lancaster says. The program reflects critically on how knowledges and values are privileged or displaced within the 鈥渕essy鈥 processes of evidence- and knowledge-making that inform policymaking.
鈥淭he 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,鈥 she says.
鈥淲hile questions about evidence are thrown into relief in the context of emergency, we鈥檙e arguing that these are actually lessons for the everyday. If we actually thought in more adaptive ways and paid attention to local knowledge, then more responsive and reflexive intervention and implementation is possible.鈥
Lead image: Lead investigators聽on the ADAPT project, Professor Gail Matthews and Dr David Darley from Kirby Institute at 麻豆社madou and St Vincent鈥檚 Hospital Sydney analysing the data. Image:聽St Vincent鈥檚 Clinic Foundation.聽
This article was originally published in 2022.
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