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.

Children with medical complexities: their distinct vulnerability in health systems' Covid-19 response and their claims of justice in the recovery phase.

In this paper, we discuss the lack of consideration given to children in the COVID-19 health systems policy response to the pandemic. We do this by focusing on the case of children with complex medical needs. We argue that, in broad terms, health systems policies that were implemented during the pandemic failed adequately to meet our obligations to both children generally and those with complex medical needs by failing to consider those needs and so to give them fair protection against harm and disadvantage. We argue that justice requires that the distinct needs and vulnerabilities of children with medical complexities are explicitly integrated and prioritised in decisions concerning healthcare and operational planning in the recovery phase and beyond.

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.

The Post-Normal Challenges of COVID-19: Constructing Effective and Legitimate Responses.

The ongoing COVID-19 emergency clearly presents novel challenges, both in terms of difficulties for maintaining public health and in assuring that governmental responses are ethically sound. Centrally, responses must respect, as best as possible, fundamental human rights and human values. Conflicts among values arise in response to the crisis, and public officials have no choice but to prioritize some while sacrificing others. Utilizing the concepts of effectiveness and legitimacy within the framework of post-normal science (PNS), we investigate and recommend processes and measures to address COVID-19 that support increased public health, while upholding established rights and values. The effectiveness and legitimacy of science-led policymaking requires investigation of how that policy ought to be made (e.g. concepts of policymaking and PNS), as well as how it ought to interact with diversely-constituted publics (e.g. public inclusion in policymaking and policy communication).