key: cord-0683822-9ygzir5m authors: Breckons, M.; Thorne, S. J.; Walsh, R.; Bhopal, S. S.; Owens, S.; Rankin, J. title: Why did the children stop coming? Reasons for paediatric emergency department attendance decrease during the first wave of the COVID-19 pandemic in the United Kingdom: A qualitative study date: 2021-03-31 journal: nan DOI: 10.1101/2021.03.30.21254661 sha: c9d460eb4cb5ff6cfa2707b26b1b57a6a4212edf doc_id: 683822 cord_uid: 9ygzir5m Objective: To explore parents' experiences and views relating to their use of children's emergency healthcare services during the Covid-19 pandemic. Design: Qualitative telephone interview study using in-depth interviews, based on the principles of grounded theory. Recorded, transcribed verbatim, managed in NVivo version 12, analysed by thematic analysis. Setting: North East England, United Kingdom. Participants: Parents of children aged 0-8 years. Findings: Three major themes emerged from the interview data: Risk to children and families, Sources of Information, and Making Healthcare-seeking Decisions. These themes encompassed a range of intellectual and emotional responses in the way that parents interpreted information related to Covid-19, and their sense of responsibility towards family and wider society. Conclusions: Together these themes aid understanding of the changes in paediatric emergency department attendances reported in the early months of the Covid-19 pandemic in the UK. The analysis suggests that public health messaging directed at those seeking urgent care for children may be inadequate and lead to adverse consequences, the impacts of which require further study and refinement. What is known about the subject • Following lockdown, there was a substantial reduction in the number of children taken to unscheduled medical care across the country • Delays in presentation can impact on children's health • It is not known what parents' views are on accessing emergency health services in a pandemic situation • Parents had to weigh up a number of information sources before deciding on whether to take their child to hospital • Public health messaging directed at those seeking urgent care for children may lead to a reduction in use of emergency healthcare services • Future lockdowns should implement focussed strategies, optimising use of emergency healthcare services, whilst avoiding harm. . CC-BY-NC-ND 4.0 International license It is made available under a perpetuity. is the author/funder, who has granted medRxiv a license to display the preprint in (which was not certified by peer review) preprint Introduction "Lockdown" measures played an important role in controlling Covid-19 in the UK from 23 March 2020 when the core government message was to "Stay home, Protect the NHS, Save Lives" [1, 2] . Seeking healthcare was always exempt from this. In the weeks that followed this disease-control intervention, there was a sudden and substantial reduction (as much as 40%) in children being brought for emergency unscheduled medical care across the country [3, 4] . Hypothesised explanations included: 1) reduced burden of infectious disease -perhaps due to reduced social mixing, 2) fear of accessing hospital, and 3) increased level of appropriate self-care at home -perhaps due to reduced school and workplace attendance by children and parents [5, 6] . In April 2020, the Royal College of Paediatrics & Child Health expressed concern over reports of delayed hospital attendance leading to a small number of children becoming unwell or dying [7] . A survey of 4,075 UK Paediatricians (>90% of all UK Paediatricians) reported nine deaths with delay in presentation as a possible contributing factor. Around a third of Paediatricians working in Emergency Departments (ED)/Paediatric Assessment Units reported witnessing at least one delayedpresentation. A recent qualitative study highlighted parental fear as a major factor in delaying seeking healthcare for children [8] . We set out to understand parents' experiences and views on the use of children's emergency healthcare services during the Covid-19 pandemic. Our objectives were: to understand if and how emergency healthcare use, self-care and information needs differed during 'lockdown' and to consider parent perceptions of risks of Covid-19. We adopted a 'generic' qualitative study design [9] which complemented our simultaneous quantitative analysis [3] . Due to the need to collect data rapidly From 22 nd May 2020, we recruited parents of children aged 0-8 years living in the North-East of England using a written advertisement containing a web link circulated via social media, charity partners, online forums and public involvement groups. On clicking this link, participants were asked to complete a consent form and a short questionnaire including demographics, previous use of children's emergency services and willingness to use these during the pandemic, willingness to participate in an interview, and contact details. We purposively sampled based on responses to obtain a maximum variation sample. Potential participants were contacted by phone or e-mail. The study rationale was discussed, questions answered and an electronic information sheet e-mailed. Digitally recorded telephone interviews were conducted by male and female researchers; a postdoctoral qualitative researcher (MB) and RW (FiY1) and ST (Intercalating Medical Student) who received training and supervision throughout. Verbal consent was 3 recorded. We used a semi- is the author/funder, who has granted medRxiv a license to display the preprint in (which was not certified by peer review) preprint The copyright holder for this this version posted March 31, 2021. ; https://doi.org/10.1101/2021.03.30.21254661 doi: medRxiv preprint structured topic guide including questions on: past and current use of children's emergency services and impact of the pandemic on healthcare decisions. This was initially piloted and reviewed regularly to explore emerging areas of interest in subsequent interviews. Recordings were transcribed verbatim by an external transcription company and anonymised to ensure confidentiality. Researchers made field notes after each interview summarising main points, reflections and considerations for topic guide refinement. Recruitment ceased when the team considered data saturation was achieved. Patients or public were not involved in the design, conduct, reporting, or dissemination of this research Data were analysed according to principles of thematic analysis [8] . Analysis took place concurrently with data collection with all team members involved. Regular team meetings were held during the data collection period to review the topic guide, interview process and aid collective familiarisation. A provisional coding framework using a mixture of inductive and deductive coding was developed at whole team read-throughs of two transcripts MB, SB, ST and RW then individually applied this to two further transcripts each before refining, agreeing a final framework and producing a codebook which included a brief description of each code. This codebook was used to code all transcripts, managed using NVivo 12. Coded data were reviewed by all team members individually and discussed before final themes and subthemes were agreed. We received survey responses from 121 parents. Of these, we approached 25 for interview, four of whom could not be contacted. We obtained full informed consent and carried out in-depth interviews with 21 parents between 29 May and 31 July 2020 lasting around 30 minutes each. Demographic information for interviewees is shown in Table 1 . is the author/funder, who has granted medRxiv a license to display the preprint in (which was not certified by peer review) preprint is the author/funder, who has granted medRxiv a license to display the preprint in (which was not certified by peer review) preprint Parents raised a range of issues during interviews, with many describing a spectrum of intellectual and emotional difficulties in interpreting information related to Covid-19, and their responsibilities towards family and wider society. For some parents, this had been a very difficult period whilst for others it had been mostly unconcerning. We identified three major themes. We provide illustrative quotes accompanied by the age of the participants' children and IMD decile because these are both well known to influence usage of emergency healthcare services. Risk was a major theme in these data, with two sub-themes. The first concerned the direct risk to children from Covid-19; the second concerned the risk infected children posed to families and society. Parents also discussed perceptions of these risks changing over the course of the pandemic. While parents generally described reluctance to expose themselves and their children to Covid-19, most parents were clear that serious health consequences for their children from this virus were unlikely. A small number of parents held the opposite view: Parents described concerns that hospitals were a source of infection. For example, being in a confined space, with young children who were not able to socially distance. All parents who used services during this period were clear that this influenced their perceptions of risk. As time progressed, parents perceived that hospital staff were likely to become better able to manage these risks: I would not be particularly worried about them catching Covid in paediatric A&E…I think that that would probably not be a high risk situation for them. I imagine now that the hospital is so slick (Interview 4: IMD 10, children aged 6 and 3) Parents described concern that their child could pass the virus on to elderly relatives or the wider community: It would be foolish for me to say I don't think there's any danger at all [to my child from but, yes, more that you want to prevent the spread as much as possible (Interview 10: IMD missing, children aged 10 and 8) Some parents spoke of concerns that their child could catch Covid-19 in an ED then potentially pass it on to the wider community. is the author/funder, who has granted medRxiv a license to display the preprint in (which was not certified by peer review) preprint The copyright holder for this this version posted March 31, 2021. ; https://doi.org/10.1101/2021.03.30.21254661 doi: medRxiv preprint Parents described how information, guidance and rules influenced their thoughts and actions on taking their child/children to the ED during this period. Most understood that emergency health services remained available throughout: However, this was not universal. Several parents interpreted the 'Stay home, Protect the NHS, Save lives' as a clear signal that the NHS should not be used: Some parents also described perceiving that even if available, services were likely to be under increased pressure, and there may be people in greater need than themselves. Other parents described the existence of misinformation online, for example one had viewed information stating that children would be separated from parents if they were suspected of having Covid-19 and the potential for this to cause worry. This theme describes ways in which parents decided to use emergency healthcare. Parents described using their judgement to balance risks and also their desire to behave in line with government guidance. While some parents had made healthcare decisions and reflected on these choices, for others this was a more hypothetical discussion. All of those who had used the ED during the pandemic had been advised to attend after seeking advice from the NHS 111 telephone line. One parent described a hierarchy of conditions: If it had been just a finger or a cut or something, I probably would have been able to deal with it myself but with it being a head injury I wanted him checked out properly by a professional to make sure that there was no concussion or anything going on (Interview 13, IMD 6, children aged 9, 5 and under 1) While it was clear to most parents that emergency services were available if needed, some confusion was sown by lack of access to other types of NHS care, for example a parent of a newborn reported difficulty accessing professionals. Many parents were confident that their actions during the pandemic were always consistent with their usual practices. Indeed, many parents argued that not seeking care for their child was a greater concern than Covid-19. However, for a few this was a 'grey area' where it was difficult to decide on the best course of action: . CC-BY-NC-ND 4.0 International license It is made available under a perpetuity. is the author/funder, who has granted medRxiv a license to display the preprint in (which was not certified by peer review) preprint The copyright holder for this this version posted March 31, 2021. ; https://doi.org/10.1101/2021.03.30.21254661 doi: medRxiv preprint Several parents said that they actively avoid seeking healthcare for their children during lockdown. One gave a specific example of delaying seeking care to avoid pressurising healthcare professionals and services: That's another thing with my 18 month old, I've actually put off taking her to the GP for quite a while because she's got a limp on one leg and I took her, it will be two weeks on Monday, she went to the GP and I wish I took her sooner but with everything going on, you didn't want to put any extra pressure on the doctors (Interview 15: IMD 10, children aged 8, 4 and 1) Another parent described increased self-management during the pandemic while another group described waiting longer than usual before seeking care, specifically pointing out that a higher threshold needed to be reached before seeking this out. In addition, one parent whose child had an existing medical condition and was very accustomed to attending the ED, described trying to find alternatives to avoid having to attend. We have described how parents weighed up competing information sources, perceptions of risk to themselves and to their children, government guidelines and rules, and a desire to reduce burden on the NHS, when considering whether to seek emergency healthcare services for their children during the Covid-19 pandemic. Whilst parents usually said they would seek care if it was needed, there were examples where this was not the case. Parents were less concerned that their child might become ill from hospital-acquired Covid-19 than their potential to become infected and then infect others. There was considerable divergence in our sample regarding whether the "Stay at Home" and "Protect the NHS" government messaging encompassed seeking emergency healthcare. Our findings provide explanations for some of the large reduction in emergency healthcare utilisation seen in EDs, and complement British Paediatric Surveillance Unit data describing perceptions of delayed-presentation to hospital among British paediatricians [5] . Previous studies have identified gaps in the ways that parents make decisions about seeking emergency-healthcare for children, with one group producing a patient-information leaflet to address this problem [10] . Hesitancy in seeking healthcare during Covid-19 has been previously described in children with cancer [11] and in the general population. In a survey of 1,044 parents in Ireland, 22% of those identifying a need for emergency healthcare for their children did not seek it [12] . Others have sought to understand the views of parents accessing vaccination for young children, with parents needing to weigh up multiple competing factors [13] , similar to the process described by parents in our study. A French study published before the pandemic described six motives for parents attending the ED, finding that parents were serious and goal-orientated in their seeking of this healthcare [14] . Despite arguments to the contrary from professionals, parents would be unlikely to agree that visits for apparent minor-illness were 'inappropriate' [14] . Our findings are in accordance; parents took their decision of whether and how to seek healthcare incredibly seriously and described ways in which they tried to reduce healthcare seeking during the pandemic. A questionnaire-based project in Ireland attempted to answer similar questions to our study; in addition to our shared findings of misinterpretation of the 'Stay at home' messaging and perception of risk, this study reported the importance of parental stress, measured using the stress subscale of the Depression Anxiety Stress Scale [15] . is the author/funder, who has granted medRxiv a license to display the preprint in (which was not certified by peer review) preprint In our study, seeking the views of parents directly allowed us to explore decision-making around this subject. Interviews were done on the telephone, minimising participant inconvenience and maintaining social distancing. One potential limitation is that we did not interview children, who are often active partners in making some of these decisions. The study population was relatively small, and represents those with motivation to participate, rather than the whole population. The sample was also skewed to a less deprived demographic than the general population. Member checking may have been helpful in ensuring that our interpretation of data were correct from a participant perspective. There are several implications for providers of paediatric emergency healthcare services, both during the current pandemic and in the future. First, providers should recognise the complex decisionmaking processes that parents perform in determining whether and when to seek help. As discussed, this process was likely to have been strongly influenced by national Covid-19 messaging, Local providers are well placed to understand specific needs of their communities, and provide crucial local context to broad national messaging; these providers could consider developing mediamessaging, for example via social-media platforms, targeted locally to reassure parents. We have discussed the internal 'threshold' that parents described having to reach in order to seek care during the pandemic. This metaphor might also be useful for organisations attempting to reduce emergency attendances in other contexts, for example by redirecting to other elements of the healthcare system. Future work should attempt to identify specific groups who are less likely to attend when required, so that strategies to optimise use of emergency healthcare services, whilst avoiding harm, can be implemented. It is likely that "Stay at home" messages will be used through the remainder of this pandemic, and again in future disease outbreaks. This research suggests that this may have adverse consequences, the impacts of which require further study. At the very least, we suggest that such messaging should be accompanied by clear statements that seeking emergency healthcare should always be prioritised. . CC-BY-NC-ND 4.0 International license It is made available under a perpetuity. is the author/funder, who has granted medRxiv a license to display the preprint in (which was not certified by peer review) preprint The copyright holder for this this version posted March 31, 2021. ; https://doi.org/10.1101/2021.03.30.21254661 doi: medRxiv preprint Coronavirus: UK brings in strict curbs on life to fight virus Staying at home and away from others (social distancing) Equity in Paediatric Emergency Departments during COVID-19. medRxiv Where have all the children gone? Decreases in paediatric emergency department attendances at the start of the COVID-19 pandemic of 2020. Archives of disease in childhood Delayed access to care and late presentations in children during the COVID-19 pandemic: a snapshot survey of 4075 paediatricians in the UK and Ireland. 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Pediatric blood & cancer Parental hesitancy and concerns around accessing paediatric unscheduled healthcare during covid-19: A cross-sectional survey Parents' and guardians' views and experiences of accessing routine childhood vaccinations during the coronavirus (COVID-19) pandemic: A mixed methods study in England Why do parents bring their children to the emergency department? A systematic inventory of motives Understanding the Impact of Public Health Advice on Paediatric Healthcare Use During COVID-19: A Cross-sectional Survey of Parents Acknowledgements: We would like to thank all of the participants who took the time to speak to us and made this research possible. Funding: This research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors.This project/research/work is supported by the National Institute of Health Research (NIHR) Applied Research Collaboration (ARC) for the North East and North Cumbria (NENC).SB, MB and JR are members of the NIHR Applied Research Collaboration for the North East and North Cumbria.Competing interests: There are no competing interests Contributors: All authors contributed to the design of the study. MB, ST and RW collected the data and all authors carried out data analysis, contributed to writing the manuscript and approved the final manuscript as submitted.