Children, acceptable health risks and COVID-19: Ethical guidance for a fair policy response
Lead Research Organisation:
University of Oxford
Department Name: Big Data Institute - NDPH
Abstract
To respond to the pandemic the NHS deployed strategies (e.g. usual service restriction, changes in care delivery, redeployment of staff and clinic space) which had an immediate effect on children's usual care. To date, the direct impact of Covid-19 infection on children's physical health has been recorded as being far milder than for other groups. By contrast the indirect impact on children has been profound, with substantial reductions in urgent activity in hospitals (von Dadelszen, Khalil, Wolfe et al. 2020 BMJ). There are no known studies which assess the extent to which health service restrictions and changes in care delivery are fair for children.
This project, undertaken in collaboration with NHS child healthcare specialists, aims to address the omission of a children-related ethical dimension in Covid-19 related research and policy. It will achieve this by exploring which risks on children's physical and mental health can be morally justified in health systems' response to the pandemic. This project will provide accessible ethical guidance to medical authorities and government departments on how the needs of children with long-term conditions should feature in the prioritisation process required in the pandemic context. This guidance will be assessed, in context, in conjunction with a range of decision-makers who are responsible for making decisions about the allocation to resources and by working closely with the clinical-academic Children and Young People's Health Partnership (CYPHP) in South East London.
This project, undertaken in collaboration with NHS child healthcare specialists, aims to address the omission of a children-related ethical dimension in Covid-19 related research and policy. It will achieve this by exploring which risks on children's physical and mental health can be morally justified in health systems' response to the pandemic. This project will provide accessible ethical guidance to medical authorities and government departments on how the needs of children with long-term conditions should feature in the prioritisation process required in the pandemic context. This guidance will be assessed, in context, in conjunction with a range of decision-makers who are responsible for making decisions about the allocation to resources and by working closely with the clinical-academic Children and Young People's Health Partnership (CYPHP) in South East London.
Organisations
- University of Oxford (Lead Research Organisation)
- UNIVERSITY OF OXFORD (Collaboration)
- Johns Hopkins Berman Institute of Bioethics (Collaboration)
- Thames Valley Commissioning Hub (Collaboration)
- UNIVERSITY OF LIVERPOOL (Collaboration)
- UNIVERSITY OF EXETER (Collaboration)
- KING'S COLLEGE LONDON (Collaboration)
Publications
Dominic
(2023)
Accessing healthcare during the COVID-19 pandemic: A qualitative exploration of the experiences of parents of children with chronic illness to inform future policies in times of crisis
in BMC Health services research
Friesen P
(2021)
Measuring the impact of participatory research in psychiatry: How the search for epistemic justifications obscures ethical considerations.
in Health expectations : an international journal of public participation in health care and health policy
Lignou S
(2023)
Children with medical complexities: their distinct vulnerability in health systems' Covid-19 response and their claims of justice in the recovery phase.
in Medicine, health care, and philosophy
Lignou S
(2022)
Changes in Healthcare Provision During Covid-19 and Their Impact on Children With Chronic Illness: A Scoping Review.
in Inquiry : a journal of medical care organization, provision and financing
Lignou S
(2022)
Changes in Healthcare Provision During Covid-19 and their Impact on Children With Chronic Illness: A Scoping Review
in INQUIRY: The Journal of Health Care Organization, Provision, and Financing
| Description | We have gathered evidence about changes to the delivery of healthcare for children with chronic conditions, and its impact on their physical and mental health, with a view to creating an ethical framework within which the impact on children's health is properly considered in the response to health emergencies. The first stage of the study looked at the changes in the delivery of and access to care for children and young people (CYP) with chronic illness and long-term conditions in the UK, as well as the health risks associated with these changes. Evidence gathered was based on findings from a scoping review and feedback from healthcare professionals, including community paediatricians, consultants in sleep medicine, paediatric nephrology, paediatric neurology, paediatric respiratory medicine, and a consultant in neonatal intensive care, and focus group discussions with parents and carers of children with chronic and complex conditions who sought care during the pandemic. Our scoping review found that the prioritisation of the Covid-19 response led to significant changes to paediatric healthcare provision, which had considerable impact on children and young people's health and wellbeing. Through subsequent discussion with paediatric healthcare professionals, we reached a greater understanding of what changes were required within settings, what considerations were taken into account and how these changes impacted healthcare professionals and their ability to provide care for children and young people. In our focus group discussions with parents and carers of children with chronic illness challenges in accessing routine healthcare and clear information about the risks of infection for their children's wellbeing were extensively discussed. Based on the evidence we gathered from all these activities, there was significant unmet need among children with chronic conditions, which could lead to increased morbidity and mortality across various physical and mental health conditions. Although telehealth improved access to services for many children, some communities will have been under-served for reasons including language barriers and digital disparities. The reduction in contact with healthcare professionals meant that vulnerable children missed their usual contact with education and social care professionals. It is estimated that many CYP may have been experiencing maltreatment or domestic violence unknown to professionals and their need to access psychological support increased during the pandemic. These findings were confirmed by decision-makers (clinical and medical directors and operational managers) we spoke to, in a series of workshops we conducted, who expressed concerns about pressure from central hospital teams to keep a significant proportion of appointments virtual, resulting in an increased risk of harm and sub-optimal care for young people. Our results also showed that only a small number of studies exploring children's health needs during the pandemic have been conducted, signifying that children's needs have not been adequately considered in evaluating health systems policy responses to the pandemic. The most notable findings relate to the experiences of neurodivergent children and children with mental health conditions. Children in these groups experienced the greatest level of healthcare disruption during the pandemic, an important conclusion given that services for these children were already under considerable strain before the pandemic began. A second key finding was that children with long-term health conditions generally encountered heavily disrupted care except in acute medical emergencies, when healthcare was mostly (although not always) less disrupted. The starkest difference in experiences between parents of children with different long-term or chronic health conditions came in the level of disruption and even alienation felt by parents of neurodivergent children and children with mental health conditions compared with parents in the other focus groups. We also reviewed policy documents and ethical guidance issued during the pandemic and noticed that no specific provision was made for the care of children with chronic illness, despite the fact that non-communicable diseases represent the largest component of the burden of childhood diseases in the UK. Based on these findings we wrote a couple of papers where we discussed ethical issues raised in the case of children with chronic illness due to changes in healthcare access and provision during the pandemic. Considering children's needs when evaluating health systems policy response is an important step to designing more effective, resilient and fair health systems. The lack of research into child health suggests the potential of bias in healthcare planning and the development of information technology. We concluded that more research is needed to understand the gaps in access to timely diagnosis and effective treatment and the impact of this on paediatric patients.The conclusions drawn from this work can inform further research on how to better support and respond to the needs of these children and their families in times of crisis. In the second phase of this project we conducted a normative analysis on the ethical obligations of the state and its institutions to children and other vulnerable groups needed special protection in times of crisis in order to further explore issues of health justice and discrimination that have not been discussed so far. We analysed ethical issues arising out of the distinct vulnerability and the harm which some children with chronic illness experienced as a result of the population-wide health system response and concluded that in order these to be addressed several initiatives need to be taken, including prioritising their health needs in decisions regarding resource allocation and operational planning in the recovery phase. We then developed an ethical framework that fairly considers the distinct needs of children with chronic and complex conditions. Our ethical framework recognised that the health needs of chronically ill children are routinely and unfairly de-prioritised under existing approaches to healthcare allocation. We suggested two new criteria to complement the existing ones and to inform decision-making for allocating care resources. To ensure that our framework is relevant and appropriate to the concerns and needs of health professionals, in the final stage of our project, we sought feedback from a range of health professionals responsible for the care of children with chronic illness. Through our discussions with healthcare professionals we got a better understanding of the challenges they face in practice and in particular those related to limited resources and the capacity to adequately meet the complex care needs of children with chronic illness. As stakeholders noted, a continuing lack of resources, including staff, equipment and space, mean that delivering effective and proportionate care for children with chronic health conditions remains challenging. Pointing to the expectation of efficiently reducing the backlog for elective care with pre-pandemic levels of funding, clinicians' feedback focused on specific and important barriers to the implementation of our framework in their hospitals and clinics. As most people who discussed limitations regarding the application of our framework in practice noted, our work offers new and important insights for healthcare prioritisation by focusing on the needs of children with chronic and long-term health conditions, both at the theoretical and practical level. We finally conducted a series of discussions and a workshop to discuss the acceptability and usefulness of our findings for clinical commissioners (papers and reports presenting these findings will be available on line after the 25th of March). This last stage also led to a collaborative seed funding award with members of e NHS South Central & West Commissioning Support Unit (CSU). This collaboration builds on the extensive experience of our researcher team and the policy partners, to renew the current Ethical Framework and decision-making processes by considering lessons learned from pandemic policy-making with a particular focus on healthcare inequalities and disadvantage, as well as focussing sharply on the challenges facing newly formed ICBs in efficiently and fairly managing patient waiting lists. The outcomes of this project exceeded our expectations, resulting in a range of positive outcomes, including collaborations both within and outside academia, seed fund awards, PhD/MSc studentships, and public events and debates. In the coming months, a series of papers, reports, blogs and broadcasts will be made available, further disseminating the findings of this project. |
| Exploitation Route | The outcomes of this funding can be used: 1) to inform stakeholders and decision-makers on the impact of changes in healthcare provision on children with chronic illness and help them identify areas for improvement regarding healthcare provision in the recovery phase 2) to help decision-makers reflect on the ethical implications of policies affected children's care and wellbeing during the pandemic and provide them with ethical guidance that fairly considers the distinct needs of children with chronic illness in prioritisation processes in the aftermath of the pandemic |
| Sectors | Communities and Social Services/Policy,Healthcare,Government, Democracy and Justice |
| Description | We discussed the early findings of our research in a series of workshops with clinical directors, medical directors and operational managers. In those workshops decision-makers and healthcare professionals reflected on the changes made by their organisation in the delivery of routine care and on factors that affected their decisions (e.g. whether redeployment of healthcare staff was necessary to meet the objectives set for the unit/hospital, how prevailing incidence rates and available resources restricted access to healthcare for children with urgent medical needs, what were the most urgent medical needs that had to be met etc). Concerns about these changes were also discussed as well as participants' views on whether these changes were successful in meeting their objectives and fair for children with long-term conditions and complex medical needs. In all the three workshops there was a shared acknowledgment of the need for clear and consistent ethical guidance to ensure fairer processes when setting healthcare priorities in times of crisis and agreement on the areas where such guidance would be most helpful. Some common areas of concern where ethical guidance is needed are: how clinical urgency should be defined in a pandemic context, how inequalities in access to care can be addressed and based on what moral criteria, whose needs should take priority when resources are scarce. We also shared our research findings with NGO's and patient and children advocacy groups (diabetes UK, National Children's Bureau, Save the Children). There was a lot of interest in our research and parts of our work will be used to inform future work on how to support families of children with chronic illness in times of crisis. We formed a new partnership with clinical commissioners in the South East of England. This partnership has arisen out of mutual interest in the future of the priority setting processes in the region and recognition of the relevance of the academic research conducted by our research team on these issues. The work of this partnership will enable academic research and expertise to engage with policy makers directly and relevantly in the act of shaping the future policy context. In particular we are renewing the current Ethical Framework and decision-making processes by considering lessons learned from pandemic policy-making with a particular focus on healthcare inequalities and disadvantage, as well as focussing sharply on the challenges facing newly formed ICBs in efficiently and fairly managing patient waiting lists in this area. |
| Sector | Healthcare,Other |
| Impact Types | Societal,Policy & public services |
| Description | Policy |
| Geographic Reach | Local/Municipal/Regional |
| Policy Influence Type | Contribution to a national consultation/review |
| Impact | These are expected outcomes and impact. Evidence will soon be available through reports/social media announcements and other publications |
| Description | practice |
| Geographic Reach | National |
| Policy Influence Type | Participation in a guidance/advisory committee |
| Description | A collaborative platform and network for responsive infectious diseases bioethics research |
| Amount | £1,999,436 (GBP) |
| Funding ID | 221719/Z/20/Z |
| Organisation | Wellcome Trust |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 01/2021 |
| End | 12/2024 |
| Description | Oxford Policy Engagement Network: OPEN Seed Fund |
| Amount | £5,000 (GBP) |
| Organisation | University of Oxford |
| Sector | Academic/University |
| Country | United Kingdom |
| Start | 01/1993 |
| End | 05/2033 |
| Title | NA |
| Description | NA |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2023 |
| Provided To Others? | No |
| Impact | NA |
| Description | GLIDE - Complexity in Care: scoping the ethical, practical and systemic challenges facing children with chronic conditions during the COVID-19 pandemic |
| Organisation | Johns Hopkins Berman Institute of Bioethics |
| Country | United States |
| Sector | Public |
| PI Contribution | Our research team undertakes and leads on preliminary scoping work in order to develop a clear rationale and a robust methodology for a research proposal that will directly address questions related to allocation decisions and social justice regarding the care of children with complex conditions in the aftermath of the pandemic in the UK and the US context. We are currently exploring the ways in which the different sub-categories of children with chronic conditions, their families, and providers interact with the health system and social provision in the UK and the modifications in resources and care pathways during the pandemic. |
| Collaborator Contribution | Our research partners contacted a systematic literature review on the impact of the pandemic on the care of children with special healthcare needs in the United States. They are also exploring the ways in which the different sub-categories of children with chronic conditions, their families, and providers interact with the health system and social provision in the US and the modifications in resources and care pathways during the pandemic. |
| Impact | Conference paper for Global Health and Bioethics Conference, Oxford 2022: "Changes in healthcare provision during Covid-19 and their impact on children with complex chronic illness: Ethical and policy implications" Conference paper for Global Health and Bioethics Conference, Oxford 2022: "Capturing the challenges facing children with complex conditions during the COVID-19 pandemic" Paper in Academic Pediatrics (under review): "Alterations in care for children with special health care needs during the COVID-19 pandemic: a narrative review" This is a multidisciplinary collaboration involving bioethicists, academic pediatricians, philosophers, oncologists and social scientists |
| Start Year | 2021 |
| Description | GLIDE - Complexity in Care: scoping the ethical, practical and systemic challenges facing children with chronic conditions during the COVID-19 pandemic |
| Organisation | Johns Hopkins Berman Institute of Bioethics |
| Country | United States |
| Sector | Public |
| PI Contribution | Our research team undertakes and leads on preliminary scoping work in order to develop a clear rationale and a robust methodology for a research proposal that will directly address questions related to allocation decisions and social justice regarding the care of children with complex conditions in the aftermath of the pandemic in the UK and the US context. We are currently exploring the ways in which the different sub-categories of children with chronic conditions, their families, and providers interact with the health system and social provision in the UK and the modifications in resources and care pathways during the pandemic. |
| Collaborator Contribution | Our research partners contacted a systematic literature review on the impact of the pandemic on the care of children with special healthcare needs in the United States. They are also exploring the ways in which the different sub-categories of children with chronic conditions, their families, and providers interact with the health system and social provision in the US and the modifications in resources and care pathways during the pandemic. |
| Impact | Conference paper for Global Health and Bioethics Conference, Oxford 2022: "Changes in healthcare provision during Covid-19 and their impact on children with complex chronic illness: Ethical and policy implications" Conference paper for Global Health and Bioethics Conference, Oxford 2022: "Capturing the challenges facing children with complex conditions during the COVID-19 pandemic" Paper in Academic Pediatrics (under review): "Alterations in care for children with special health care needs during the COVID-19 pandemic: a narrative review" This is a multidisciplinary collaboration involving bioethicists, academic pediatricians, philosophers, oncologists and social scientists |
| Start Year | 2021 |
| Description | Meta-analysis of ethics research for COVID inquiry |
| Organisation | University of Exeter |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Contribution of our team: interim findings of our project on the ethical issues raised in the implementation of population-wide healthcare restrictions during the pandemic |
| Collaborator Contribution | Contribution of researchers from the AHRC- funded projects Pandemic and Beyond and Ethics Accelerator: a meta-analysis of ethics related research |
| Impact | A research piece for the Covid Inquiry |
| Start Year | 2022 |
| Description | OPEN/Oxford Policy Engagement Network Seed Fund |
| Organisation | Thames Valley Commissioning Hub |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | This collaboration concerns an important area of ethics and health care policy making and practice. It provides an important opportunity for the members of our research team to further develop their thinking and refine their research approach for use in real-life contexts through feasibility and better comprehension of practical and ethical issues involved. This collaboration started 2 months ago and is aimed for our research team in Oxford (SL and MS) to make the widest possible use of its expertise while links with policy partners ( via members of Thames Valley Commissioning Hub) will enable ongoing discussion and collaboration on the ethics of healthcare prioritisation in the UK. |
| Collaborator Contribution | There is clear acknowledgement of the importance of ethical and social accounts of value in healthcare resource allocation decisions to respond to current pressures the NHS faces. For the policy partners (Thames Valley Commissioning Hub) this collaboration is expected to help develop new practically focussed approaches and perspectives relevant to healthcare policy and resource allocation that are not limited to the dominant methods of analysis and that will enable integration of a health justice approach into the decision-making process |
| Impact | these are forthcoming (i) A background scoping document which outlines the range of considerations and challenges informing the current context. This document will include a thorough articulation of the current challenges facing regional commissioning (as outlined briefly above) and will be the background material used to inform the Workshop. (ii) A report recording the progress made at the Workshop which includes action points and future plans for policy developments, academic work and downstream networking plans and opportunities. This report will document progress being made and set the agenda for future research and policy change in this important area. (iii) Draft considerations for a revised and renewed Ethical Framework, arising from the Workshop, developed and co-authored by the project partners and Workshop attendees |
| Start Year | 2023 |
| Description | OPEN/Oxford Policy Engagement Network Seed Fund |
| Organisation | University of Oxford |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | This collaboration concerns an important area of ethics and health care policy making and practice. It provides an important opportunity for the members of our research team to further develop their thinking and refine their research approach for use in real-life contexts through feasibility and better comprehension of practical and ethical issues involved. This collaboration started 2 months ago and is aimed for our research team in Oxford (SL and MS) to make the widest possible use of its expertise while links with policy partners ( via members of Thames Valley Commissioning Hub) will enable ongoing discussion and collaboration on the ethics of healthcare prioritisation in the UK. |
| Collaborator Contribution | There is clear acknowledgement of the importance of ethical and social accounts of value in healthcare resource allocation decisions to respond to current pressures the NHS faces. For the policy partners (Thames Valley Commissioning Hub) this collaboration is expected to help develop new practically focussed approaches and perspectives relevant to healthcare policy and resource allocation that are not limited to the dominant methods of analysis and that will enable integration of a health justice approach into the decision-making process |
| Impact | these are forthcoming (i) A background scoping document which outlines the range of considerations and challenges informing the current context. This document will include a thorough articulation of the current challenges facing regional commissioning (as outlined briefly above) and will be the background material used to inform the Workshop. (ii) A report recording the progress made at the Workshop which includes action points and future plans for policy developments, academic work and downstream networking plans and opportunities. This report will document progress being made and set the agenda for future research and policy change in this important area. (iii) Draft considerations for a revised and renewed Ethical Framework, arising from the Workshop, developed and co-authored by the project partners and Workshop attendees |
| Start Year | 2023 |
| Description | Oxford Policy Engagement Network |
| Organisation | University of Oxford |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | The principal Investigator of this project (SL) will conduct a series of policy-engagement events (April to June 2023) where researchers working in child health, ethics and policy issues related to the pandemic will present and discuss their project findings with policy makers at national and regional level. This event will be covered by media and more information will be available online on the OPEN website |
| Collaborator Contribution | Oxford Policy Engagement Network will organise the event |
| Impact | this is a forthcoming event |
| Start Year | 2023 |
| Description | Paediatrics and pandemic related system changes |
| Organisation | King's College London |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Contribution of our AHRC team: we shared our research findings on challenges in delivering healthcare for children with chronic illness and long-term conditions during the pandemic. We identified the main practical challenges meeting standards of care in times of crisis and how those affected the fiduciary duties of healthcare professionals to meet the medical needs of their vulnerable patients. We examined ethical issues raised in everyday practice for peadiatric healthcare professionals and how these should inform decisions and ethical guidelines in health systems shock. |
| Collaborator Contribution | Contribution of the KCL research team: they shared their findings from research with health care professionals' (HCP) delivering children's health during the COVID-19 Pandemic at the GSTT Evelina London Children's Hospital. They explored challenges with rapid innovation and implementation, problems with communication and different understandings of duty of care and psychosocial impacts. |
| Impact | This collaboration examines how the findings from both projects can inform the development of an ethical framework regrading duty of care and paediatric populations in times of crisis. This is an interdisciplinary collaboration involving: social scientists, philosophers/ethicists, clinical psychologists, academic pediatricians and public health consultants. |
| Start Year | 2021 |
| Description | Paediatrics and pandemic related system changes |
| Organisation | University of Liverpool |
| Department | Department of Women's and Children's Health |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Contribution of our AHRC team: we shared our research findings on challenges in delivering healthcare for children with chronic illness and long-term conditions during the pandemic. We identified the main practical challenges meeting standards of care in times of crisis and how those affected the fiduciary duties of healthcare professionals to meet the medical needs of their vulnerable patients. We examined ethical issues raised in everyday practice for peadiatric healthcare professionals and how these should inform decisions and ethical guidelines in health systems shock. |
| Collaborator Contribution | Contribution of the KCL research team: they shared their findings from research with health care professionals' (HCP) delivering children's health during the COVID-19 Pandemic at the GSTT Evelina London Children's Hospital. They explored challenges with rapid innovation and implementation, problems with communication and different understandings of duty of care and psychosocial impacts. |
| Impact | This collaboration examines how the findings from both projects can inform the development of an ethical framework regrading duty of care and paediatric populations in times of crisis. This is an interdisciplinary collaboration involving: social scientists, philosophers/ethicists, clinical psychologists, academic pediatricians and public health consultants. |
| Start Year | 2021 |
| Description | Blog for LSE COVID-19, School of Public Policy |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | We wrote a blog - which will be published end of March 2022 - in which we argue that the NHS neglected the needs of younger people with chronic conditions during the pandemic. Children and young people with chronic conditions have faced delays in seeing a GP and getting a diagnosis and treatment during the pandemic. Lockdowns and the switch to virtual appointments made it harder for health professionals to identify problems. We concluded that the NHS needs to understand the impact the pandemic has had on younger patients and incorporate their needs in prioritisation decisions in the recovery phase. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Blog for the Pandemic and Beyond (AHRC-funded website) |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | This blog post discusses how the response to the pandemic impacted the delivery of healthcare and subsequently the health and wellbeing of children with epilepsy, asthma, diabetes, cancer, inflammatory bowel disease, neurodevelopmental difference and mental health conditions. It then draws some ethical and policy implications for healthcare planning in the recovery phase and beyond. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Children with complex chronic conditions; a neglected group in public policy decisions? Lessons learned from the pandemic in the UK and US context |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Our panel brings together speakers from diverse disciplines, including pediatricians, philosophers, and bioethicists specializing in public health ethics and resource allocation. The panelists will discuss the ways in which children with complex chronic conditions have been and should be considered in decisions regarding resource allocation during public health emergencies and the reconfiguration of health care and public services more generally. This interdisciplinary approach can help to highlight the complex and multifaceted nature of ethical issues raised in the care of children with complex chronic conditions and examine approaches that promote a more holistic and inclusive understanding of how to address these issues. At the conclusion of this activity, participants will be able to 1) Identify the distinct needs and vulnerability of children with complex chronic conditions. 2) Consider challenges related to efforts to meet the continuing and complex needs of children in public health emergencies and more generally. 3) Evaluate strategies to address the challenges faced by patients, and families in the care of children with complex chronic conditions in a public health emergency context and beyond. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Meetings with key stakeholders |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | We hold five on line meetings with key stakeholders and policy-makers: two SE-London ICS and decision-makers from GOSH and Evelina Hospital, the Chair of NICE committee, and two Paediatric Consultants in NHS Sheffield NHS Children's Foundation Trust. The purpose of these meetings was to discuss the early findings of our report regarding the impact of changes in healthcare delivery on children with chronic illness and to understand how decision-makers weighed their decisions and the practical and ethical challenges they faced during the pandemic outbreak. These meetings helped us ensure that our research is attentive to the policy context. During our discussion we had the opportunity to explore the acceptability and relevance of our conclusions regarding the ethical acceptability of different policies that affected the care of children during the pandemic in different health institutions in the UK. |
| Year(s) Of Engagement Activity | 2022 |
| Description | OPEN Conversations: Ethics in Public Policy and Administration (EPPA) Series |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | a short series of OPEN conversations between ethics researchers and policymakers or public administration officials around ethics in healthcare resource allocation in the post-pandemic context. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Talk: Aqualitative exploration of the experiences of parents of children with chronic illness to inform future policies in times of crisis |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | This is a schedule talk for May 23-25 2023 for the Royal College of Paediatrics Conference in Wales, UK. The talk has two objectives. First to examine how the needs of children with complex conditions should feature in NHS objectives for restoring services and reducing the COVID-related backlogs. Second to develop an ethical framework that can function as a decision-support tool supporting the decision-making processes for commissioners and providers of healthcare in the aftermath of the pandemic and beyond. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.rcpch.ac.uk/news-events/rcpch-conference |
| Description | Talk: Changes in healthcare provision for children with chronic illness during the pandemic:How should the obligations of the health institutions feature in the prioritisation processes in the recovery phase? |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | The purpose of this talk was to present and discuss why children with chronic complex conditions present a distinct case for ethical consideration in public policy |
| Year(s) Of Engagement Activity | 2023 |
| Description | Workshop with Clinical and Medical Directors and Operational Managers |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Three workshops were held with clinical directors, medical directors and operational managers. The purpose was to discuss our research findings on how health systems policy response to the pandemic affected the care and health of children with long term conditions and medical complexities and to understand the complex context within which these decisions were made. An important outcome for our project was that our research was informed by a wide range of perspectives and insights. Participants included Consultants in community paediatrics and neurodisability, sleep medicine, paediatric nephrology, paediatric neurology, paediatric respiratory medicine, neonatal intensive care working in a major London children's hospital. Difficulties in balancing the needs of children with the requirement to prioritise Covid-19 patients were further discussed as well as the need to take a different approach for children's community services. Those views are now informing the next stage of our research which aims to develop an ethical guidance on how the needs of children with chronic illnesses and long-term conditions should feature in prioritisation processes required in the pandemic context |
| Year(s) Of Engagement Activity | 2021,2022 |
| Description | online Talk - Bristol University |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Postgraduate students |
| Results and Impact | To present the finds of the AHRC project regarding the impact of changes in healthcare provision during the pandemic for children with chronic and complex conditions. The ethical and policy issues that the distinct vulnerability of those children raise by focusing on their claims of justice in the post-pandemic area. |
| Year(s) Of Engagement Activity | 2023 |
| Description | stkeholder engagement |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | The purpose of this engagement activity was to seek feedback on the ethical framework we develop as part of this project from the RCPCH ethics committee (ELAC). 20 people attended the meeting with a background in child health, ethics, law as well as parents of children with chronic illness. Participants were asked to consider whether, in their view, the framework we provided was necessary and whether it could be practically implemented. Finally, in order to make sure it was as useful as possible, stakeholders were invited to detail any potential improvements that could be made to the framework as it is currently formulated. Next steps, e.g. policy engagement activities and research collaborations were also discussed |
| Year(s) Of Engagement Activity | 2023 |
| Description | workshop with Clinical Effectiveness Team, NHS South Central & West Commissioning Support Unit |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Policymakers/politicians |
| Results and Impact | To renew the current Ethical Framework and decision-making processes by considering lessons learned from pandemic policy-making with a particular focus on healthcare inequalities and disadvantage, as well as focussing sharply on the challenges facing newly formed ICBs in efficiently and fairly managing patient waiting lists. |
| Year(s) Of Engagement Activity | 2023 |