Accessing healthcare during the COVID-19 pandemic: a qualitative exploration of the experiences of parents and carers of children with chronic illness to inform future policies in times of crisis.

BACKGROUND: The purpose of thispaper is to explore the experiences of parents and carers of children with chronic health conditions in accessing healthcare during the Covid-19 pandemic. Children with chronic conditions typically rely on both planned and unplanned care, and contact with healthcare professionals over extensive periods of time. Their distinct care needs render these children vulnerable to even to minor changes in healthcare provision. The wide-ranging care disruptions during the pandemic were therefore likely drastically to affect their health and wellbeing; an assessment of the effects of Covid-19 policies on healthcare access and quality of care delivered for this group is needed. METHODS: From 25/01/2022 to 25/05/2022, four focus groups were held with parents/carers of children with diabetes, neurodivergence, mental health conditions, and medical complexities to explore their experiences in navigating the healthcare system during the pandemic. Interviews were transcribed and then subjected to thematic analysis using NVivo qualitative research software. RESULTS: Our results indicate that children with chronic health conditions (and their parents/carers) experienced difficulties accessing healthcare during the pandemic. Problems with late diagnosis, prolonged waiting times, and deficiencies with telemedicine were identified, as were impacts of healthcare disruptions on children's wellbeing, and the wellbeing of wider families. We found that children with neurodivergence and those with mental health conditions were particularly affected with their health needs repeatedly de-prioritised. Furthermore, the loss of contact with multi-specialty clinical teams profoundly affected parents and carers, leaving them feeling isolated in managing their children's health. These diminished relationships became another vector for uncertainty in supporting children's health. CONCLUSION: The effects of healthcare disruptions on the welfare of children with chronic conditions (and their families), are well evidenced in this work, providing deeper understandings of the relationships between these children, their families and clinicians. The evidence in this paper aims to inform future policy and ethical guidelines so that the needs of children with long-term health conditions can be properly considered in times of crisis.

National surveillance data analysis of COVID-19 vaccine uptake in England by women of reproductive age.

Women of reproductive age are a group of particular concern with regards to vaccine uptake, related to their unique considerations of menstruation, fertility, and pregnancy. To obtain vaccine uptake data specific to this group, we obtained vaccine surveillance data from the Office for National Statistics, linked with COVID-19 vaccination status from the National Immunisation Management Service, England, from 8 Dec 2020 to 15 Feb 2021; data from 13,128,525 such women at population-level, were clustered by age (18-29, 30-39, and 40-49 years), self-defined ethnicity (19 UK government categories), and index of multiple deprivation (IMD, geographically-defined IMD quintiles). Here we show that among women of reproductive age, older age, White ethnicity and being in the least-deprived index of multiple deprivation are each independently associated with higher vaccine uptake, for first and second doses; however, ethnicity exerts the strongest influence (and IMD the weakest). These findings should inform future vaccination public messaging and policy.

Routine childhood vaccine uptake in South London during the early COVID-19 pandemic

1029 Table 1Total vaccine doses given according to socioeconomic background and ethnicity in South London 2016 - 2020 1029 Table 2Routine infant vaccination uptake in South London 2016-2020 – children who received ≥ 1 dose† of the specified vaccine as a proportion of children born in the year specified (6-in-1;Meningitis B, Pneumococcus) or the preceding year (MMR)ConclusionDespite concerns regarding reduced uptake of routine childhood vaccinations during the pandemic, this cohort does not appear to show a disproportionate reduction in uptake, and more children received the influenza vaccine during the early pandemic time than in preceding years.These findings could help inform policy makers to improve catch-up strategies where needed. Additionally, there may be a trend of reduced vaccine uptake over recent years, which could have significant public health implications.

On race and ethnicity during a global pandemic: An 'imperfect mosaic' of maternal and child health services in ethnically-diverse South London, United Kingdom.

Background: The SARS-CoV-2 pandemic has brought racial and ethnic inequity into sharp focus, as Black, Asian, and Minority Ethnic people were reported to have greater clinical vulnerability. During the pandemic, priority was given to ongoing, reconfigured maternity and children's healthcare. This study aimed to understand the intersection between race and ethnicity, and healthcare provision amongst maternity and children's healthcare professionals, during the SARS-CoV-2 pandemic. Methods: A qualitative study consisting of semi-structured interviews (N = 53) was undertaken with maternity (n = 29; August-November 2020) and children's (n = 24; June-July 2021) healthcare professionals from an NHS Trust in ethnically-diverse South London, UK. Data pertinent to ethnicity and race were subject to Grounded Theory Analysis, whereby data was subjected to iterative coding and interpretive analysis. Using this methodology, data are compared between transcripts to generate lower and higher order codes, before super-categories are formed, which are finally worked into themes. The inter-relationship between these themes is interpreted as a final theory. Findings: Grounded Theory Analysis led to the theory: An 'Imperfect Mosaic', comprising four themes: (1) 'A System Set in Plaster'; (2) 'The Marginalised Majority'; (3) 'Self-Discharging Responsibility for Change-Making'; and (4) 'Slow Progress, Not No Progress'. The NHS was observed to be brittle, lacking plasticity to deliver change at pace. Overt racism based on skin colour has been replaced by micro-aggressions between in-groups and out-groups, defined not just by ethnicity, but by other social determinants. Contemporaneously, responsibility for health, wellbeing, and psychological safety in the workplace is discharged to, and accepted by, the individual. Interpretation: Our findings suggest three practicable solutions: (1) Representation of marginalised groups at all NHS levels; (2) Engagement in cultural humility which extends to other social factors; and (3) Collective action at system and individual levels, including prioritising equity over simplistic notions of equality. Funding: This service evaluation was supported by the King's College London King's Together Rapid COVID-19 Call, successfully awarded to Laura A. Magee, Sergio A. Silverio, Abigail Easter, & colleagues (reference:- 204823/Z/16/Z), as part of a rapid response call for research proposals. The King's Together Fund is a Wellcome Trust funded initiative.

Changes in Healthcare Provision During Covid-19 and Their Impact on Children With Chronic Illness: A Scoping Review.

This paper provides an overview of the evidence around how the health systems and policy response to the Covid-19 pandemic affected children with long-term conditions in the UK. We conducted a scoping review guided by the PRISMA-ScR Checklist. The PubMed and PsycINFO databases (2019-August 2021) were searched and screened for papers (of any design) by 2 reviewers independently. The electronic database search was supplemented by manual searching. A total of 32 papers were identified, including studies on UK paediatric populations, studies on chronic illness in the UK, and international studies on chronic illness and children (including data from the UK). Most studies focussed on epilepsy, cancer, diabetes or asthma. Three categories of impact were identified: (a) impact of policy response on the delivery of and access to child healthcare (b) impact of innovative practice on children's physical and mental health (c) impact of service restrictions on children's physical health. Our results showed that policy response to the pandemic significantly affected healthcare provision for children with chronic illness in the UK. However, the specific assessment of the impact of service restrictions and innovative practice on children's health and wellbeing is limited. Future research is required to fill knowledge gaps on changes in access to effective diagnostic and treatment investigations and their impact on a range of paediatric patients during the pandemic.

Children and Young People's Health Partnership Evelina London Model of Care: economic evaluation protocol of a complex system change.

INTRODUCTION: The Children and Young People's Health Partnership (CYPHP) Evelina London Model of Care is a new approach to integrated care delivery for children and young people (CYP) with common health complaints and chronic conditions. CYPHP includes population health management (services shaped by data-driven understanding of population and individual needs, applied in this case to enable proactive case finding and tailored biopsychosocial care), specialist clinics with multidisciplinary health teams and training resources for professionals working with CYP. This complex health system strengthening programme has been implemented in South London since April 2018 and will be evaluated using a cluster randomised controlled trial with an embedded process evaluation. This protocol describes the within-trial and beyond-trial economic evaluation of CYPHP. METHODS AND ANALYSIS: The economic evaluation will identify, measure and value resources and health outcome impacts of CYPHP compared with enhanced usual care from a National Health Service/Personal Social Service and a broader societal perspective. The study population includes 90 000 CYP under 16 years of age in 23 clusters (groups of general practitioner (GP) practices) to assess health service use and costs, with more detailed cost-effectiveness analysis of a targeted sample of 2138 CYP with asthma, eczema or constipation (tracer conditions). For the cost-effectiveness analysis, health outcomes will be measured using the Paediatric Quality of Life Inventory and quality-adjusted life years (QALYs) using the Child Health Utility 9 Dimensions (CHU-9D) measure. To account for changes in parental well-being, the Warwick-Edinburg Mental Well-being Scale will be integrated with QALYs in a cost-benefit analysis. The within-trial economic evaluation will be complemented by a novel long-term model that expands the analytical horizon to 10 years. Analyses will adhere to good practice guidelines and National Institute for Health and Care Excellence public health reference case. ETHICS AND DISSEMINATION: The study has received ethical approval from South West-Cornwall and Plymouth Research Ethics Committee (REC Reference: 17/SW/0275). Results will be submitted for publication in peer-reviewed journals, made available in briefing papers for local decision-makers, and provided to the local community through website and public events. Findings will be generalisable to community-based models of care, especially in urban settings. TRIAL REGISTRATION NUMBER: NCT03461848.

The COVID-19 System Shock Framework: Capturing Health System Innovation During the COVID-19 Pandemic.

BACKGROUND: Coronavirus disease 2019 (COVID-19) has resulted in over 2 million deaths globally. The experience in Australia presents an opportunity to study contrasting responses to the COVID-19 health system shock. We adapted the Hanefeld et al framework for health systems shocks to create the COVID-19 System Shock Framework (CSSF). This framework enabled us to assess innovations and changes created through COVID-19 at the Sydney Children's Hospitals Network (SCHN), the largest provider of children's health services in the Southern hemisphere. METHODS: We used ethnographic methods, guided by the CSSF, to map innovations and initiatives implemented across SCHN during the pandemic. An embedded field researcher shadowed members of the emergency operations centre (EOC) for nine months. We also reviewed clinic and policy documents pertinent to SCHN's response to COVID-19 and conducted interviews and focus groups with stakeholders, including clinical directors, project managers, frontline clinicians, and other personnel involved in implementing innovations across SCHN. RESULTS: The CSSF captured SCHN's complex response to the pandemic. Responses included a COVID-19 assessment clinic, inpatient and infectious disease management services, redeploying and managing a workforce working from home, cohesive communication initiatives, and remote delivery of care, all enabled by a dedicated COVID-19 fund. The health system values that shaped SCHN's response to the pandemic included principles of equity of healthcare delivery, holistic and integrated models of care, and supporting workforce wellbeing. SCHN's resilience was enabled by innovation fostered through a non-hierarchical governance structure and responsiveness to emerging challenges balanced with a singular vision. CONCLUSION: Using the CSSF, we found that SCHN's ability to innovate was key to ensuring its resilience during the pandemic.

Child mortality in England during the COVID-19 pandemic.

OBJECTIVES: Using the National Child Mortality Database (NCMD), this work aims to investigate and quantify the characteristics of children dying of COVID-19, and to identify any changes in rate of childhood mortality during the pandemic. DESIGN: We compared the characteristics of the children who died in 2020, split by SARS-CoV-2 status. A negative binomial regression model was used to compare mortality rates in lockdown (23 March-28 June), with those children who died in the preceding period (6 January-22 March), as well as a comparable period in 2019. SETTING: England. PARTICIPANTS: Children (0-17 years). MAIN OUTCOME MEASURES: Characteristics and number of the children who died in 2020, split by SARS-CoV-2 status. RESULTS: 1550 deaths of children between 6th of January and 28 June 2020 were notified to the NCMD; 437 of the deaths were linked to SARS-CoV-2 virology records, 25 (5.7%) had a positive PCR result. PCR-positive children were less likely to be white (37.5% vs 69.4%, p=0.003) and were older (12.2 vs 0.7 years, p<0.0006) compared with child deaths without evidence of the virus. All-cause mortality rates were similar during lockdown compared with both the period before lockdown in 2020 (rate ratio (RR) 0.93 (0.84 to 1.02)) and a similar period in 2019 (RR 1.02 (0.92 to 1.13)). CONCLUSIONS: There is little to suggest that there has been excess mortality during the period of lockdown. The apparent higher frequency of SARS-CoV-2-positive tests among children from black, Asian and minority ethnic groups is consistent with findings in adults. Ongoing surveillance is essential as the pandemic continues.