key: cord-0853868-80xnu4bj
authors: Wildman, Josephine M.; Morris, Stephanie; Pollard, Tessa; Gibson, Kate; Moffatt, Suzanne
title: “I wouldn't survive it, as simple as that”: Syndemic vulnerability among people living with chronic non-communicable disease during the COVID-19 pandemic
date: 2021-12-09
journal: SSM Qual Res Health
DOI: 10.1016/j.ssmqr.2021.100032
sha: bac95963ef456906ad8456e97680268d3ec3408a
doc_id: 853868
cord_uid: 80xnu4bj

The co-occurrence of COVID-19, non-communicable diseases and socioeconomic disadvantage has been identified as creating a syndemic: a state of synergistic epidemics, occurring when co-occurring health conditions interact with social conditions to amplify the burden of disease. In this study, we use the concept of illness management work to explore the impact of the COVID-19 pandemic on the lives of people living with, often multiple, chronic health conditions in a range of social circumstances. In-depth interviews were conducted between May and July 2020 with 29 participants living in a city in North East England. Qualitative data provide unique insights for those seeking to better understand the consequences for human life and wellbeing of the interacting social, physical and psychological factors that create syndemic risks in people's lives. Among this group of people at increased vulnerability to harm from COVID-19, we find that the pandemic public health response increased the work required for condition management. Mental distress was amplified by fear of infection and by the requirements of social isolation and distancing that removed participants' usual sources of support. Social conditions, such as poor housing, low incomes and the requirement to earn a living, further amplified the work of managing everyday life and risked worsening existing mental ill health. As evidenced by the experiences reported here, the era of pandemics will require a renewed focus on the connection between health and social justice if stubborn, and worsening health and social inequalities are to be addressed or, at the very least, not increased.

The COVID-19 pandemic is co-occurring with epidemics of chronic physical and mental non-23

NCDs are at increased risk of suffering serious harm from COVID-19, with the majority of hospital 26 deaths from COVID-19 occurring in patients with NCDs such as type 2 diabetes, hypertension and 27 ischaemic heart disease (Kluge et al., 2020) . There is evidence too of an increase in mental health 28 problems, such as depression and anxiety, during the pandemic due to loneliness, social isolation, 29 and fear of contracting the virus (Khan et al., 2020; Krendl and Perry, 2020) . The co-occurrence of 30 COVID-19 and chronic non-communicable diseases has been identified as creating a 'syndemic' 31 (Bambra et al., 2020; Mendenhall, 2020 ): a state of synergistic epidemics, occurring when disease-32 disease interactions amplify the burden of ill health (Mendenhall, 2017; Singer et al., 2017; Singer 33 and Clair, 2003); for example, type 2 diabetes is identified as one of the most important COVID-19 34 co-morbidities, operating through a variety of physiological mechanisms to vastly increase the risk of 35 hospitalisation and death from COVID-19 complications (Corrao et al., 2021) 

In addition to disease-disease interactions, a vital ingredient of a syndemic is the presence of social 38 factors that enhance vulnerability to disease, further amplify the burden of disease, and complicate 39 the avoidance of disease (Singer et al., 2017) . Among the best characterised syndemics are the co-40 occurrence of HIV/AIDS, substance abuse and violence (Singer and Clair, 2003) and the co-41 occurrence of type 2 diabetes, poverty, and depression in a number of urban contexts, and among 42 some communities, immigration, violence and abuse (Mendenhall, 2019; Singer and Clair, 2003) . In 43 the current pandemic, there are important interactions between COVID-19 and social factors such as 44 socioeconomic disadvantage and systemic racism (Mendenhall, 2020; Sheldon and Wright, 2020) . 45

The threat of COVID-19 creates burdens even in the absence of the disease; that is, suffering is not 47 confined to the infected (indeed, a large proportion of the infected appear to remain asymptomatic 48 (Nogrady, 2020) ). There are increasing concerns that the widely adopted public health responses of 49 lockdown, social distancing and self-isolation are themselves impacting on health and wellbeing 50 (Krendl and Perry, 2020; Marroquín et al., 2020) . While older people are most vulnerable to the 51 J o u r n a l P r e -p r o o f health effects of COVID-19, many younger people are suffering greater psychological and economic 52 impacts from attempts to halt the virus' spread by shutting down large sections of the economy 53 (Belot et al., 2021) . Younger people are more likely to be employed in sectors shut down by 54 pandemic restrictions, more likely to have been made unemployed over the course of the pandemic, 55

and are more likely to experience social distancing measures as disruptive (Belot et al., 2021 ; Costa 56 Dias et al., 2020) . Compounding the unequal health impacts of the pandemic, the health-damaging 57 effects of the public health measures are creating a novel form of iatrogenic syndemic (Singer et al., 58 2017), experienced most severely within disadvantaged communities, where people are more likely 59 to be struggling financially and to access basic resources in 'lockdown' , and are 60 less able to mitigate risks of virus exposure by working from home (Martin, 2021) . 61

To understand how health conditions interact with each other and with social factors to create a 63 syndemic, we need a way of explicating the burdens of disease. The notion that managing the 64 burden of chronic disease often involves "hard and heavy" work has been widely explored (Corbin 65 and Strauss, 1985; May et al., 2014, p. 1). Illness management requires various types of work: illness-66 related work, comprising managing both symptom and treatment burdens (e.g., taking medications, 67 following health advice) and the everyday life work (e.g., paid work, looking after home and family) 68 that occurs alongside illness work (Corbin and Strauss, 1985; May et al., 2014) . May et al. (2014) 69 observe that the burden of treatment work takes place within a relational network of support that 70 includes family, friends, and healthcare professionals. 71

The work of managing multi-morbidity is particularly challenging due to the requirement to cope 72 with a range of physical, emotional and social experiences (Coventry et al., 2015) . Illness trajectories 73 are constantly shifting, to a greater or lesser degree, and each trajectory change requires changes in 74 the type and nature of work and the resources required to perform it. Uncertainty and flux are 75 features of life with co-morbidity (Coventry et al., 2015) . The concept of the work required for 76 chronic illnness management has parallels with the concept of a syndemic in that the work of 77 J o u r n a l P r e -p r o o f from March 22 2020, avoiding all in-person contact with others (Institute for Government, 2021). 105

The 'stay at home' restrictions (March 23 2020 to May 12 2020) directed everyone to remain at 106 home, including, where possible, to work from home, throughout this period except for a limited 107 number of 'essential' reasons (Institute for Government, 2021). To help limit job losses, the UK 108 government introduce a Coronavirus Job Retention Scheme on March 20 2020, enabling employers 109 to furlough staff and for a government grant to cover 80% of staff wages (up to £2500 per month) 110 (Department for Work and Pensions, 2020). To support those made unemployed due to the 111 pandemic, the UK government also announced a temporary 12 month £20 per week increase in the 112 rate of Universal Credit, the UK's main working-age welfare benefit (Mackley et al., 2021) . The 113 increase was subsequently extended by five months, ceasing in October 2021. 114 115 From May 13 2020, restrictions were gradually relaxed to allow more outdoor mixing and the 'stay at 116 home' message was replaced with the, more ambiguous, 'stay alert' message (Institute for 117 Government, 2021). From June 13 2020, support bubbles allowed single adult households to meet 118 with members of one other household. Restrictions were further eased through June 2020, with a 119 phased schools reopening, meeting six people outside permitted and restrictions on leaving home 120 replaced with a requirement to be home overnight (from June 1 2020), the re-opening of non-121 essential shops (June 15 2020) and a relaxing of social distancing rules from 2 to 1 metre (June 23 122 2020) (Institute for Government, 2021). 123 124 125 Participants in the on-going social prescribing study had completed a baseline health-related quality 126 of life questionnaire in the months July 2018 to June 2019. At the time of this present study (May to 127 July 2020), participants were being re-contacted to collect 12-month follow-up data. From May 128 2020, after they had completed the survey, participants were invited to take part in a telephone 129 interview about their experiences of the pandemic. Sixty participants were contacted with a request 130 to complete a follow-up questionnaire between May and June 2020 and 29 agreed to take part in an 131 interview. 132 133 Prior to interview, participants were posted an information sheet and consent form. Interviews were 134 conducted between May 11 and July 13 2020 by SLM, TP, KG and SM. Consent was verbally audio 135 recorded prior to the interview commencing. Interviews were framed around a topic guide, which 136 covered participants and their household members' health, shielding status and direct experiences 137 of COVID-19; and the impact of the pandemic on everyday life, employment, health and 138 relationships. Demographic data were collected on age, gender, ethnicity, employment, education, 139 household income, and housing tenure/type/composition. At the start of the interview, participants 140 were asked to complete a further questionnaire to collect data on their current health-related 141 quality of life. Health-related quality of life was measured using the EQ-5D-5L, which captures quality 142 of life across five domains of mobility, self-care, usual activities, pain/discomfort and 

Interviews were professionally transcribed, checked by the research team for inaccuracies and 152 anonymised. NVivo 12 supported data management and coding. A thematic approach to data 153 analysis was taken (Braun and Clarke, 2006) . Transcripts were read by all authors allowing for 154 immersion and familiarity. Data analysis was led by JMW and SLM who conducted close reading and 155 re-reading of the transcripts. Initially a priori and inductive coding frameworks were developed using 156 J o u r n a l P r e -p r o o f line-by-line coding by JMW and SLM and discussed with the whole research team before being 157 applied to the transcripts. The coding framework was refined using constant comparison to develop 158 conceptual themes. To ensure rigor, all transcripts were independently coded by both JMW and 159 SLM. Discrepancies in coding were discussed and resolved. All authors met regularly to discuss 160 emerging themes and develop the final analysis. Names used in this paper are pseudonyms and 161 identifiable personal details have been omitted. We present interview participants' EQ-5D data 162 collected at interview to characterise their health-related quality of life. and two were single parents living with school-age children. Twenty participants were living in 171 households with lower-than-median incomes (median household income in 2020 was around 172 £30,000) (Office for National Statistics, 2020). Seven participants were in employment, 15 were 173 receiving welfare benefits (e.g., Universal Credit), and 16 were retired from paid work (some had 174 taken early retirement due to their health). Four participants reported receiving official advice to 175 shield, while two were living with family members advised to shield. Figure 1 The requirement to "be strong" while unable to give -or to receive -comfort while she was widowed 418 had devastated Gill's mental health. There is a limit to how long people can carry on in often very 419 difficult circumstances. The cognitive work required to cope with radical upheaval consumes already 420 limited resources and is unlikely to be unsustainable long-term (Yin et al., 2020) . Many participants 421 ended their accounts with a deeply expressed desire for life to "get back to normal" as quickly as 422 possible. Long-term illness management requires hope and the possibility of a reward for effort 423 expended (Corbin and Strauss, 1985) . While Derek was hoping that, "something good has got to 424 The family were trying to manage on one rather than two wages. 469

The capacity to undertake illness work is eroded by socioeconomic disadvantage . 471

The social conditions that put people at increased risk of NCDs were also those conditions that 472 meant they were less able to avoid infection, or paid a higher price for doing so. Syndemic vulnerability was greatly increased for participants whose chronic ill health placed them at 524 increased risk of harm or death from COVID-19, but who lacked the resources to comfortably shield 525 themselves and their loved ones from harm. The long-term effects of debt and depression are likely 526 to outlast the effects of the pandemic. 527 symptoms, treatment and everyday life work reduces a patients' capacity to access healthcare or 541 carry out self-care, and leads, inevitably, to worse outcomes. Our findings provide an illustration of a 542 feedback loop that typifies a syndemic: social conditions predispose people to co-occurring physical 543 and mental NCDs and to increased risk of COVID-19; social conditions interact with co-occurring 544 diseases to increase the effort required to manage health, while also reducing the resources 545 available to do so. Inevitably, all too often, the result is a cycle of worsening health and diminishing 546 capacity to stay well. For some of this study's participants, disruptions to the balance of effort 547 required to fit together illness-related work and everyday life work, and a lack of resources that 548 would help them adapt, resulted in a 'domino effect' of worsening physical and mental health 549 (Corbin and Strauss, 1985) . Nations, 2020) will require a "renewed focus on the connection between health and social justice" 557 (Singer and Clair, 2003, p. 431 ). Mendenhall (2020) has taken issue with the notion that COVID-19 is 558 part of a pandemic syndemic, arguing that such a characterisation overlooks the differing 559 socioeconomic contexts and political responses that serve to amplify the burden of disease. For 560 example, there is emerging evidence that countries that have experienced higher rates of COVID-19 561 cases and deaths have higher levels of income inequality that "is a proxy for many elements of 562 socioeconomic disadvantage that may contribute to the spread of, and deaths from, COVID-19" 563 (Wildman, 2021, p. 456) . The catastrophic economic effects of the pandemic provide a persuasive 564 case for addressing socioeconomic inequalities, but there is as yet scant evidence that UK 565 government policy is addressing these in any meaningful way (Marmot et al., 2020) . Indeed, the UK 566 government has removed the £20 per week pandemic-related Universal Credit uplift, which had 567 been found to represent a significant share of welfare entitlements for many claimants, particularly 568 those for whom Universal Credit is their only source of income -a group that has increased in size 569 due to the pandemic (Mackley et al., 2021) . 570

Our study has several limitations. Participants were all living in a city in North East England, which at 572 the time of the study, had relatively low rates of COVID-19 cases. Experiences of the pandemic may 573 have been different in areas with higher case rates. Further, North East England is among the least 574 ethnically diverse regions of England; nearly 94% of people living in North East England are White 575 British (Office for National Statistics, 2018). As people from ethnic minority backgrounds appear to 576 be at increased vulnerability to COVID-19, their accounts of the syndemic impacts of the pandemic 577 may differ. Social distancing regulations meant that interviews were conducted by telephone. Face-578 to-face interviews may have allowed participants to provide more detailed accounts; however, our 579 experience was that participants were happy to be interviewed remotely. Indeed, a number 580 commented they found it easier to talk about their experiences at a distance. 

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EUROQOL Instruments, 2017. EQ-5D-5L: About. EUROQOL Instruments

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Population Norms for the EQ-5D BT -Self-Reported Population Health: 631 An International Perspective based on EQ-5D

Epidemiology of Type 2 diabetes -Global burden of 635 disease and forecasted trends

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Mental health during the COVID-19 pandemic: Effects of 647 stay-at-home policies, social distancing behavior, and social resources

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Rethinking the patient: using Burden of Treatment 651 Theory to understand the changing dynamics of illness

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Patient Work and Their Contexts: Scoping Review

Personal Independence Payment) is replacing DLA (Disability living allowance) for 706 working-age people with a disability; ESA (Employment Support Allowance) is available for people with a 707 disability or health condition that affects their work capacity; Universal credit (UC) is available for people on a 708 low income

Figure 1: Proportions of participants reporting a problem (score of 2 or more