Sapfo Lignou | University of Oxford (original) (raw)
Papers by Sapfo Lignou
Archives of Disease in Childhood
BMC Health Services Research
Background The purpose of thispaper is to explore the experiences of parents and carers of childr... more 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 transcri...
Background The purpose of thispaper is to explore the experiences of parents and carers of childr... more 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.
Medicine, Health Care and Philosophy
In this paper, we discuss the lack of consideration given to children in the COVID-19 health syst... more 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.
Improvements in neonatal and paediatric care mean that many children with complex care needs (CCN... more Improvements in neonatal and paediatric care mean that many children with complex care needs (CCNs) now survive into adulthood. This cohort of children places great challenges on health and social care delivery in the community: they require dynamic and responsive health and social care over a long period of time; they require organisational and delivery coordination functions; and health issues such as minor illnesses, normally presented to primary care, must be addressed in the context of the complex health issues. Their clinical presentation may challenge local care management. The project explored the interface between primary care and specialised health services and found that it is not easily navigated by children with CCNs and their families across the European Union and the European Economic Area countries. We described the referral-discharge interface, the management of a child with CCNs at the acute community interface, social care, nursing preparedness for practice and th...
Inquiry, Mar 30, 2022
This paper provides an overview of the evidence around how the health systems and policy response... more 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.
<b>Pharmaceutical industry, academia and people with experience of mental illness as partne... more <b>Pharmaceutical industry, academia and people with experience of mental illness as partners in research: a need for ethical guidance</b>
<b>Pharmaceutical industry, academia and people with experience of mental illness as partne... more <b>Pharmaceutical industry, academia and people with experience of mental illness as partners in research: a need for ethical guidance</b>
Issues and Opportunities in Primary Health Care for Children in Europe, 2019
Wellcome Open Research, 2020
Background: Several social and policy developments have led to research partnerships in mental he... more Background: Several social and policy developments have led to research partnerships in mental health research, which depart from traditional research models. One form of such partnerships is among research institutions, industry (pharmaceutical and biotech) and people with lived experience of mental illness (RIPs). There are several benefits but also ethical challenges in RIPs. An ethics-based approach to anticipating and addressing such ethical issues in mental health research is lacking. Given the expansion of RIPs in treatment development for mental health illness, guidance to support ethical and trustworthy collaborative mental health research projects is essential. Methods: To develop a moral framework for evaluating the ethics of RIPs, we systematically searched PubMed for peer-reviewed literature discussing good practices in research partnerships. Searches were also conducted in websites of known organizations supporting patient engagement with industry in mental health rese...
Advancements in mental health research, social changes and policy developments have led to the em... more Advancements in mental health research, social changes and policy developments have led to the emergence of new forms of research partnerships, which bring together research institutions, public companies and lay people as partners in the same research project. In this paper, we argue that partnerships comprised of industry, academia and people with experience of mental illness may present practical and ethical challenges that affect the conduct of research and undermine public trust in research collaborations. We outline a number of ethical problems from the motivation to combine competing interests and values of these diverse research partners. We argue that while critical perspectives on each of the partnership forms outlined above exist in the literature, the combination of industry, research and PPI actors in partnership in mental health research has not received sufficient scrutiny. We suggest that a robust ethical approach is needed to properly substantiate the value of such ...
Health Expectations, 2019
The American Journal of Bioethics, 2019
The Lancet. Child & adolescent health, 2018
This Viewpoint presents and discusses the development of the first core principles and standards ... more This Viewpoint presents and discusses the development of the first core principles and standards for effective, personalised care of children living with complex care needs in Europe. These principles and standards emerged from an analysis of data gathered on several areas, including the integration of care for the child at the acute-community interface, the referral-discharge interface, the social care interface, nursing preparedness for practice, and experiences of the child and family. The three main principles, underpinned by a child-centric approach, are access to care, co-creation of care, and effective integrated governance. Collectively, the principles and standards offer a means to benchmark existing services for children living with complex care needs, to influence policy in relation to service delivery for these children, and to provide a suite of indicators with which to assess future service developments in this area.
Journal of Medical Ethics, 2017
Cluster randomised trials are an increasingly important methodological tool in health research bu... more Cluster randomised trials are an increasingly important methodological tool in health research but they present challenges to the informed consent requirement. In the relatively limited literature on the ethics of cluster research there is not much clarity about the reasons for which seeking informed consent in cluster randomised trials may be morally challenging. In this paper, I distinguish between the cases where informed consent in cluster trials may be problematic due to the distinct features of ‘population-based’ interventions, which have not been adequately discussed in the research ethics literature, and the cases where informed consent may be problematic for reasons that investigators also encounter in other research designs. I claim that informed consent requirements in cluster trials should be adjusted to the level of risk involved, arguing for a more comprehensive notion of research risk than that currently found in the research ethics guidelines, and the amount of freed...
Research Ethics Forum, 2016
The purpose of this paper is to propose an alternative account by which the ethical threshold of ... more The purpose of this paper is to propose an alternative account by which the ethical threshold of acceptable risk in paediatric research can be assessed. Three popular interpretations of the minimal risk threshold and the problems they raise when applied in the research context are presented. First, the “risks of daily life” standard and the “routine examinations” standard are addressed. It is argued here that neither of them can provide a satisfactory morally justified framework within which risks during paediatric non-therapeutic research should be assessed. The alternative view of the “charitable participation” standard is then discussed and the argument advanced that despite its advantages, it generates unavoidable difficulties when considered in the context of medical research. Finally, the author argues that consideration of the risk to which parents are willing to expose their children in a vaccination programme in the case of an infectious disease, which does not constitute a significant threat to them, can facilitate the definition of this threshold. Although the proposed account shares some of its strong points with those already existing, it does not lead to inconsistencies when applied in research context.
Research Ethics, 2011
In this essay the ethical issues related to the ‘standard of care’ are discussed together with th... more In this essay the ethical issues related to the ‘standard of care’ are discussed together with the implications for the treatment of the control group in transnational clinical trials. It is argued that the human right to health and the duty of justice formulate the moral basis on which this case should be debated.
Archives of Disease in Childhood
BMC Health Services Research
Background The purpose of thispaper is to explore the experiences of parents and carers of childr... more 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 transcri...
Background The purpose of thispaper is to explore the experiences of parents and carers of childr... more 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.
Medicine, Health Care and Philosophy
In this paper, we discuss the lack of consideration given to children in the COVID-19 health syst... more 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.
Improvements in neonatal and paediatric care mean that many children with complex care needs (CCN... more Improvements in neonatal and paediatric care mean that many children with complex care needs (CCNs) now survive into adulthood. This cohort of children places great challenges on health and social care delivery in the community: they require dynamic and responsive health and social care over a long period of time; they require organisational and delivery coordination functions; and health issues such as minor illnesses, normally presented to primary care, must be addressed in the context of the complex health issues. Their clinical presentation may challenge local care management. The project explored the interface between primary care and specialised health services and found that it is not easily navigated by children with CCNs and their families across the European Union and the European Economic Area countries. We described the referral-discharge interface, the management of a child with CCNs at the acute community interface, social care, nursing preparedness for practice and th...
Inquiry, Mar 30, 2022
This paper provides an overview of the evidence around how the health systems and policy response... more 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.
<b>Pharmaceutical industry, academia and people with experience of mental illness as partne... more <b>Pharmaceutical industry, academia and people with experience of mental illness as partners in research: a need for ethical guidance</b>
<b>Pharmaceutical industry, academia and people with experience of mental illness as partne... more <b>Pharmaceutical industry, academia and people with experience of mental illness as partners in research: a need for ethical guidance</b>
Issues and Opportunities in Primary Health Care for Children in Europe, 2019
Wellcome Open Research, 2020
Background: Several social and policy developments have led to research partnerships in mental he... more Background: Several social and policy developments have led to research partnerships in mental health research, which depart from traditional research models. One form of such partnerships is among research institutions, industry (pharmaceutical and biotech) and people with lived experience of mental illness (RIPs). There are several benefits but also ethical challenges in RIPs. An ethics-based approach to anticipating and addressing such ethical issues in mental health research is lacking. Given the expansion of RIPs in treatment development for mental health illness, guidance to support ethical and trustworthy collaborative mental health research projects is essential. Methods: To develop a moral framework for evaluating the ethics of RIPs, we systematically searched PubMed for peer-reviewed literature discussing good practices in research partnerships. Searches were also conducted in websites of known organizations supporting patient engagement with industry in mental health rese...
Advancements in mental health research, social changes and policy developments have led to the em... more Advancements in mental health research, social changes and policy developments have led to the emergence of new forms of research partnerships, which bring together research institutions, public companies and lay people as partners in the same research project. In this paper, we argue that partnerships comprised of industry, academia and people with experience of mental illness may present practical and ethical challenges that affect the conduct of research and undermine public trust in research collaborations. We outline a number of ethical problems from the motivation to combine competing interests and values of these diverse research partners. We argue that while critical perspectives on each of the partnership forms outlined above exist in the literature, the combination of industry, research and PPI actors in partnership in mental health research has not received sufficient scrutiny. We suggest that a robust ethical approach is needed to properly substantiate the value of such ...
Health Expectations, 2019
The American Journal of Bioethics, 2019
The Lancet. Child & adolescent health, 2018
This Viewpoint presents and discusses the development of the first core principles and standards ... more This Viewpoint presents and discusses the development of the first core principles and standards for effective, personalised care of children living with complex care needs in Europe. These principles and standards emerged from an analysis of data gathered on several areas, including the integration of care for the child at the acute-community interface, the referral-discharge interface, the social care interface, nursing preparedness for practice, and experiences of the child and family. The three main principles, underpinned by a child-centric approach, are access to care, co-creation of care, and effective integrated governance. Collectively, the principles and standards offer a means to benchmark existing services for children living with complex care needs, to influence policy in relation to service delivery for these children, and to provide a suite of indicators with which to assess future service developments in this area.
Journal of Medical Ethics, 2017
Cluster randomised trials are an increasingly important methodological tool in health research bu... more Cluster randomised trials are an increasingly important methodological tool in health research but they present challenges to the informed consent requirement. In the relatively limited literature on the ethics of cluster research there is not much clarity about the reasons for which seeking informed consent in cluster randomised trials may be morally challenging. In this paper, I distinguish between the cases where informed consent in cluster trials may be problematic due to the distinct features of ‘population-based’ interventions, which have not been adequately discussed in the research ethics literature, and the cases where informed consent may be problematic for reasons that investigators also encounter in other research designs. I claim that informed consent requirements in cluster trials should be adjusted to the level of risk involved, arguing for a more comprehensive notion of research risk than that currently found in the research ethics guidelines, and the amount of freed...
Research Ethics Forum, 2016
The purpose of this paper is to propose an alternative account by which the ethical threshold of ... more The purpose of this paper is to propose an alternative account by which the ethical threshold of acceptable risk in paediatric research can be assessed. Three popular interpretations of the minimal risk threshold and the problems they raise when applied in the research context are presented. First, the “risks of daily life” standard and the “routine examinations” standard are addressed. It is argued here that neither of them can provide a satisfactory morally justified framework within which risks during paediatric non-therapeutic research should be assessed. The alternative view of the “charitable participation” standard is then discussed and the argument advanced that despite its advantages, it generates unavoidable difficulties when considered in the context of medical research. Finally, the author argues that consideration of the risk to which parents are willing to expose their children in a vaccination programme in the case of an infectious disease, which does not constitute a significant threat to them, can facilitate the definition of this threshold. Although the proposed account shares some of its strong points with those already existing, it does not lead to inconsistencies when applied in research context.
Research Ethics, 2011
In this essay the ethical issues related to the ‘standard of care’ are discussed together with th... more In this essay the ethical issues related to the ‘standard of care’ are discussed together with the implications for the treatment of the control group in transnational clinical trials. It is argued that the human right to health and the duty of justice formulate the moral basis on which this case should be debated.
Review and revision of the Research for Humanitarian Crises (R2HC) Ethics Framework, 2017
In late 2016, Elrha commissioned a review, revision and update of the R2HC Ethical Framework by C... more In late 2016, Elrha commissioned a review, revision and update of the R2HC Ethical Framework by Curry, Waldman and Caplan. The revision and update consisted of: a desk-based review of the existing framework and feedback on its use, a literature review, an online survey and a stakeholder consultation. Based on cumulative findings from this work, a revised and updated framework is proposed here. This new framework was developed to provide: a) ethical guidance specifically for humanitarian health research, but with wider relevance for other humanitarian research and potentially even humanitarian practice; b) a tool which encourages reflection, inductive and deliberative thinking and proactive response to ethical issues that arise in developing protocols, reviewing proposals and conducting humanitarian health research; c) interconnected, overlapping and repeated opportunities for reflection on ethical challenges based on an assumption that these reflections are guided by context- specific factors; d) a tool which has been developed through a firm grounding of the belief that reflection on ethical issues should be done throughout research projects, including before, during and after the research; e) a user-friendly, stand-alone tool, easily detachable from other accompanying literature. The new version of the R2HC Ethics Framework is graphically presented as a series of ‘steps’ without any hierarchical relationships. An explanatory section precedes the graphical framework to act as guidance for its usage and formative structure.