key: cord-0984488-8l0injug authors: Eshareturi, C.; Wareham, A.; Rattray, M.; Haith-Cooper, M.; McCarthy, R. title: An exploration of the impact of SARS-CoV-2 (COVID-19) restrictions on marginalised groups in the UK date: 2021-06-12 journal: Public Health DOI: 10.1016/j.puhe.2021.05.026 sha: 9c2f2ccd85a75ef99748ebc1dfa965406ea7e535 doc_id: 984488 cord_uid: 8l0injug BACKGROUND: To contain the spread of COVID-19 within the UK over the past year, there have been a series of local and national lockdowns. These restrictions are likely to have impacted upon the health and well-being of marginalised groups who rely on now closed social and community support services to stay healthy. An understanding of the experiences of marginalised people is important; therefore, this study aimed to explore the impact of the COVID-19 restrictions on the health and well-being of marginalised groups in the UK. METHODS: In summer 2020, a rapid telephone survey was conducted by trained, trusted volunteers with 76 participants who were from marginalised groups. As part of this survey, 64 participants consented to describe their experience of lockdown. These case studies were thematically analysed to identify patterns of meaning. RESULTS: Findings indicate that lockdown led to the deterioration of health of participants, impacted adversely on their socio-economic positions and affected access to food and essential supplies. In addition, government public health messaging was considered confusing and inadequate. CONCLUSIONS: This study highlights the need for pathways into services which support marginalised groups to remain accessible during periods of restrictions and essential supplies and food to be mapped and protected for marginalised individuals within our local communities. We are facing an unprecedented national emergency due to the rapid spread of the COVID-19 virus within the UK. We are now in the recovery phase of the pandemic following the UK Government enforcing stringent measures to ensure communities across the UK slowed the spread of the virus. This included the use of local and national lockdowns to control the spread of the virus. Containing it locally within particular areas mitigates against reimposing national lockdown restrictions across the whole of the country. 1 These measures are critical to the success of slowing the spread of COVID-19 but are likely to impact upon the health and well-being of people who are already marginalised in the UK. To be marginalised is to be excluded from access to the range of services and/or opportunities open to others. 2 Thus, marginalised individuals become peripheralized based on their identities, associations, experiences and environment. 3 Examples of marginalised groups include the homeless, drug users, sex workers, refugees and ethnic minorities such as Roma and Irish Travellers. 4 Available evidence indicates that marginalised individuals become even more marginalised during emergencies where health conditions can be exacerbated by their poor access to health services. 5 People who are marginalised tend to rely on social and community support services to stay healthy, 6 and the current COVID-19 pandemic has led to such services temporarily closing. It is not known how this has impacted on the health and well-being of people who are marginalised. Towards addressing this knowledge gap, we secured funding from NHS England and Improvement to undertake a study aiming to explore the impact of the COVID-19 restrictions on the health and well-being of marginalised groups in the UK. In addition, further objectives of the study are given as follows: Explore specific factors related to the COVID-19 restrictions influencing the health and well-being of marginalised people. Identify marginalised peoples' psychosocial, cultural and physical needs and how they can be met during the current COVID-19 pandemic. Feedback emerging findings to mobilise support and inform policy around the COVID-19 response. In MayeJune 2020, a rapid telephone survey was conducted with 76 participants from marginalised groups and collated using 'Survey Monkey'. Refer Table 1 for a breakdown of the marginalised groups. As part of this survey, 64 respondents gave informed consent to describe their experience of lockdown. These narratives were collected as case studies to develop a specific and thorough knowledge about the individual's experiences of the COVID-19 restrictions within a particular social and cultural context. 7, 8 In this study, the context of living in a pandemic is vital and, the case study approach offered insights into a phenomenon that may not be achieved by other research methods by encouraging a deeper more detailed investigation. 9 Ethical approval to undertake the study was secured from the University of Bradford on 11th June 2020, ref: EC26225. Undertaking research with people who are marginalised can lead to power imbalances between the researcher and participants, influencing the meaningfulness of the data. 10 Consequently, we trained trusted volunteers and experts by experience from these marginalised groups to interview the study participants. Some of the volunteers were bilingual/multilingual and conducted the interview in the participants preferred language when there was a language barrier. Participants were purposively sampled and approached by telephone through voluntary sector organisations which the individual was connected with. An information sheet was read to the participant over the telephone to gain informed verbal consent to continue. Participants were invited to share their reflections on lockdown and the impact on their lives. They did this either verbally over the telephone with the interviewer writing their story or the participant wrote their own story and e mailed it to the study team. Emergent data were analysed thematically using the principles of Braun and Clarke 11 to identify and report patterns of meanings. Two members of the research team located, scrutinized and reported repeated patterns of meaning within the data. These were developed into commonly recurring themes. To increase credibility, agreement was reached on the final themes. Table 2 conveys the thematic coding process to theme generation. Analyses were also supported by the use of participants' verbatim quotations which were assigned pseudonyms to ensure anonymity. These quotations were used to illuminate the findings. NVivo12 ® qualitative data analysis software programme manufactured by QSR International was used to store, organise and code data. Of a total of 76 participants, 64 case studies were completed. Some of these were short, and others were very detailed. Most participants identified as having overlapping and multiple vulnerabilities, for example, people who use drugs and are homeless. Consequently, we have not identified in the finding the characteristics of each person. Four key themes emerged from the data which are discussed in the following paragraphs: Most participants discussed how COVID-19 restrictions adversely affected their health in a number of ways. This included deterioration in mental health where existing conditions including depression and post-traumatic stress disorder became exacerbated after lockdown: … She cannot cope and she got worse in her strategy to cope as she used to be self-harming and she was getting better prior to the pandemic, however during the lockdown she went back to harm herself. (Participant 73-interviewer interpreting). Participants believed that deterioration of mental health conditions was due to having to stay at home during lockdown and not mixing with other people: It has been very hard in lockdown to remain positive, almost all my coping strategies for low moods weren't available: gigs, theatres, cinemas, restaurants, even meeting friends in the pub were all offlimits. (Participant 17) The lack of face-to-face social interaction left people feeling very lonely, and this affected their behaviour in everyday life: … has left him feeling a sense of abandonment and there have been times where his motivation has been very low, to the extent that he did not even open his curtains for a number of days. (Participant 53 interviewer interpreting). Moreover, poor mental health was not helped by routine mental health services being reduced or closed: I have not seen my support worker face to face for over three months. Previous to lockdown I had 22hours of her support per week. During lockdown this has not been possible. We have had to reduce the support to just 2 x 1 hour Zoom sessions plus daily brief WhatsApp messaging. This has not been sufficient, and my mental health is less stable now than pre-lockdown. (Participant 29). Many participants also reported developing physical health conditions which they had to live with as they could not access the services they needed. Participants described how they had to live with pain due to not being able to get an appointment when they needed one: In addition, some participants who were in poor health before the imposed restrictions found that their health deteriorated further as a result of closure of health services. This included lack of access to asthma reviews, physiotherapy, care support and General Practitioner (GP) appointments: The MS affects my mobility, and my balance and I have fallen when losing my balance several times over the years. I usually have regular physiotherapy appointments in hospital or at home. I also have a monthly reflexology appointment and 3 weekly massages. This has all stopped with lockdown. My mobility has got a lot worse without these. (Participant 37). My GP Surgery has been pretty good though they missed a couple of calls they were supposed to make to me. Even managed to get an appt in the Surgery when my Asthma got very bad (Participant 70) Evidence from the literature indicates that marginalised individuals concurrently suffer from poor health and wellbeing. 5 The findings of this study corroborate this, and as articulated under this theme, this poor health often worsened as a consequence of the imposed restriction adopted to control Covid 19. This finding is further supported by a recent study assessing the psychological impact and resistance of the Spanish population to COVID 19 which found that 70% of the people who participated in the study (n¼34730) recognized feelings such as nervousness and anguish. 12 Some participants discussed the impact of the imposed restrictions on their socio-economic positions. This included difficulties receiving welfare payments during lockdown: A few days before lockdown the DWP unjustly and unfairly suspended my claim, which meant while most of the country was being given money to cope, I had nothing but my pt (part time) wage (Participant 13). since covid this year I've literally been financially crippled with no aid, whilst prices are soaring! Let alone availability of essentials! It was frightening!! (Participant 65) And a delay to the asylum process: Just before lockdown, she has granted asylum and normally is supposed to evacuate the share house, rent a flat and do the process to invite her husband back home to join her but because of lockdown all these processes were halted and she had to stay home all the week (no voluntary job, no college, nothing). (Participant 34 interviewer interpreting). COVID-19 also led to some participants losing their employment; this included beginning a new role that was subsequently cancelled: At the start of lockdown, I was on my way to a new job. I had been suffering from mental health issues but I was looking forward to a new start and a positive beginning in my new job and new area. However, lockdown started, and I stopped moving and stayed where I was. The new job was totally cancelled. I am feeling lost and I really don't know what to do or where to go next. (Participant 41). And also not being able to find employment: I don't have a job and I can't get one because of this. Drug services and probation can't be bothered. It's all a joke. (Participant 54) Information is key in controlling the spread of COVID-19 and in ensuring protective measures are understood and adopted. Many Table 2 Thematic coding process to theme generation. participants indicated that the information received explaining the imposed restrictions often conveyed mixed messages and did not adequately prepare them for the reality of living in this way. This included advice about shielding and participants who believed they should have received a letter advising them to shield but did not: The govt letters re needing to isolate never came. I only found out about that from other disabled folk..and one GP eventually said I didn't need to self shield for 12weeks unless I needed to take Steroids for Asthma... And also receiving no communication beyond being told to shield: What was surprising is the total lack of support from the government. In fact, ironically, the text telling me to shield was the last I heard from any government agency for many weeks. (Participant 1) It also related to the travelling community and what they could and could not do: I received conflicting instructions on whether I should stay or go, both from the police and the council, as no one seemed to be sure of the protocol on how roadside dwellers and fulltime vanlifers should best adhere to the government's advice to stay at home and not to travel. On several occasions I was advised to move on by police and the council, despite the fact that this would have forced me to travel further and, had I been carrying the virus, would have increased the likelihood of me spreading it. (Participant 43) Access to food and essential supplies Food insecurity as a consequence of the COVID-19 restrictions was a key problem for participants. Many discussed how they were living with food poverty due to the pandemic: Getting fresh food was difficult, I could get milk from the local shop, but the selection of other things was small and the prices were much higher than the supermarket. (Participant 1) This food poverty led to many participants relying on food parcels and food banks to meet their needs: CRISIS have helped me get food, I have received occasional food parcels and I have occasionally used food banks. (Participant, 36) In addition, some participants experienced situations where there were food shortages of specific foods in shops: I have to eat gluten free food and rely on my sons to go shopping for me. At the start of the pandemic all the gluten free food was sold out, and my sons were queuing for 3 hours to go shopping and then not being able to buy the things that I needed. (Participant 52) . Furthermore, a number of participants raised that they could not access delivery slots from supermarkets as they did not fall in the shielded group. This was despite having health conditions including physical disabilities, making food shopping difficult. Unfortunately I did not fall within a priority or shielded group so I did not have access or any reason to purchase more of one product than was recommended (Participant 4). Similarly, some participants experienced difficulties accessing essential supplies specific to their health conditions. This included difficulties getting continence supplies and antimicrobial wash but also disposable gloves: I have to have suppositories inserted for my bowel routine, and have to buy my own gloves as GP has always refused to prescribe them. When the pandemic started, I couldn't buy gloves anymore as they sold out everywhere, and then when they were back in stock they were ridiculously expensive. I've had sleepless nights and so so much anxiety because of trying to get gloves. My husband can't empty my bowels without gloves. The last lot of gloves I sourced I had to buy from a vet!! (Participant 33). The leg bags that I normally use have been out of stock since the start of the pandemic. I use an antimicrobial wash daily, which my pharmacy haven't been able to get in stock. (Participant 39). Some participants reported difficulties with accessing their prescriptions from pharmacies during the pandemic and relied on other people to collect medication for them. In addition, in some cases, essential medication was out of stock: As I was running low on my inhaler I was getting very worried. I asked some friends if they had any spare ones they could post but eventually I managed to find one online so I bought that instead. (Participant 59) Our findings have provided an insight into the impact of the COVID-19 pandemic restrictions on the lives of marginalised groups in society. The biggest impact of living through the restrictions was the deterioration of mental and physical health in a group with preexisting health conditions. Social isolation exacerbated poor mental health but also being unable to leave the house impacted physical health in some people. Poor health was exacerbated by being unable to secure appointments in primary and secondary care with hospital appointments and scheduled surgery being cancelled. The restrictions also impacted on people's socio-economic positions, with increased poverty due to difficulties securing benefits and the loss of employment. In addition, food and essential supply insecurity was problematic for many participants with difficulties securing supermarket home delivery slots and difficulties securing essential supplies to support their health conditions. There appeared to be difficulties relating to shielding with some participants with an underlying health condition not receiving a letter from the government and others receiving a letter but with no further guidance on what this meant in reality. Owing to the novelty of COVID-19, there is very little published research examining the impact of the pandemic on marginalised groups. There is however evidence from previous pandemics which our findings support. Brooks et al. 17 undertook a rapid review of the effects of quarantine on people with underlying mental health conditions and found further deterioration of mental health due to feelings of loneliness, anxiety and insomnia. People with posttraumatic stress disorder found an increase in their symptoms, and there was an increase in cases of suicide in this group. A study exploring people's experiences of COVID-19 in India 18 found that a quarter of people had developed depressive symptoms which were mainly blamed on financial insecurity but also the fear of contracting COVID-19. In China, cancelled appointments impacted on people's health. 19 Our findings reflect this describing how existing mental health conditions were exacerbated due to cancelled appointments. Previous evidence found that people with mental health problems are substantially more prone to develop infectious diseases such as pneumonia and suffering from cognitive decline. 20 Consequently, as being at a higher risk of a negative outcome if they developed COVID-19, they were also at an increased risk of not following government guidance and acquiring the disease due to reduced awareness and impaired ability to assess risk. 21 This suggests that during periods of lockdown, maintaining mental health services is crucial to reduce the risk of people developing COVID-19. In addition, available evidence indicates that marginalised individuals may suffer from poor health literacy, language barriers and are likely to struggle with complex information. 16 Our findings suggest that key public health messages were confusing and inadequate. Although this reflects a previous study examining the general population, 15 it is important that extra care is taken to ensure key public health messages are accessible to marginalised people who may experience barriers to receiving information. There is a wealth of evidence discussing the consistent relationship between low socio-economic status and poor health. 13 Our findings support this relationship but also exacerbation of poverty due to the imposed restrictions. This financial insecurity reflects an ongoing UK study examining the psychological and social impact of the COVID-19 pandemic and demonstrates a widening in financial inequalities as a result of the restrictions. 14 Evidence from previous pandemics has shown that marginalised groups experienced significant inequalities in accessing support and treatment leading to disproportionately worse outcomes. 22 This resonates with the difficulties described in this study for people with pre-existing health conditions accessing food, essential supplies and health care. Similar to our findings, in previous pandemics, public stockpiling led to a lack of available essential supplies impacting on marginalised groups without the resources to stockpile and who genuinely need essential supplies. 23, 24 These need addressing in future lockdowns, ensuring stocks of essential supplies are maintained but also dispatched to people who are vulnerable. Our findings have implications for practitioners and policy makers. Imposed restriction significantly affected access to food, other essential supplies and medication. Pathways to essential supplies and food need to be developed, mapped and protected for marginalised individuals within our local communities. In addition, imposed restrictions led to financial hardship, and there is a need for services which support marginalised groups to remain accessible during periods of restrictions. Furthermore, when planning for future restrictions, it is important to consider the impact of these on marginalised groups who in normal times experience difficulties accessing health services. Further research is then needed to identify the impact of intervention developed on the lives of people who are marginalised. We also recommend research examining the long-term implications of the COVID-19 restrictions on the health and well-being of people who are marginalised to ensure that policy makers and practitioners can address peoples' long-term health needs and social support. Ethical approval was acquired from the University of Bradford. This study was funded by NHS England and Improvement who had no involvement in this study. 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