Ethical implications of COVID-19:vulnerabilities in a global perspective

The COVID-19 pandemic has highlighted a number of ethical issues that typically have not been addressed openly in public debate. The argument 'protect the vulnerable' has been a mantra to motivate all sorts of measures, many of them not scientifically motivated. In this article, the concept of 'vulnerability' is analyzed, and a model is suggested to distinguish layers of vulnerability that may or may not result in poor outcomes, depending on how many layers are present and how they interact. Ethical aspects also need to be considered at the global level, where the issue of vaccine distribution illustrates that stronger obligations and responsibilities need to be taken to fulfil wishes and declarations on the fair distribution of resources

'I actually felt like I was a researcher myself.' On involving children in the analysis of qualitative paediatric research in the Netherlands

OBJECTIVES: To evaluate the feasibility of a new approach to paediatric research whereby we involved children in analysing qualitative data, and to reflect on the involvement process. SETTING: This was a single-centre, qualitative study in the Netherlands. It consisted of research meetings with individual children at home (Phase I) or group meetings at school (Phase II). In Phase I, we identified themes from a video interview during five one-on-one meetings between a child co-researcher and the adult researcher. In Phase II, during two group meetings, we explored the themes in detail using fragments from 16 interviews. PARTICIPANTS: We involved 14 school children (aged 10 to 14 years) as co-researchers to analyse children's interviews about their experience while participating in medical research. Notes were taken, and children provided feedback. A thematic analysis was performed using a framework approach. RESULTS: All co-researchers identified themes. The time needed to complete the task varied, as did the extent to which the meetings needed to be structured to improve concentration. The children rated time investment as adequate and they considered acting as co-researcher interesting and fun, adding that they had learnt new skills and gained new knowledge. The experience also led them to reflect on health matters in their own lives. The adult researchers considered the process relatively time intensive, but the project did result in a more critical assessment of their own work. CONCLUSION: The new, two-phase approach of involving children to help analyse qualitative data is a feasible research method. The novelty lies in involving children to help identify themes from original interview data, thereby limiting preselection of data by adults, before exploring these themes in detail. Videos make it easier for children to understand the data and to empathise with the interviewees, and limits time investment

Developing a new understanding of enabling health and wellbeing in Europe: harmonising health and social care delivery and informatics support to ensure holistic care

Europe faces significant challenges to its health and care services due to demographic change, being at the beginning of a large and continuing rise in the number and proportion of older citizens, while advances in healthcare mean that an increasing number of these and other adults will have enduring chronic health conditions. But for all citizens with actual or potential health problems, the maintenance of optimal health depends not just on healthcare services, but on support for nutrition, hygiene, mobility and shopping, socialisation, warm dry housing and other aspects of daily living, as without these health will be compromised and deteriorate. This demand surge is happening at a time when Information and Communication Technologies (ICT) are increasingly being used in other service sectors to enable consumer customisation and better resource management. An objective for all health systems, and for patients, is to minimise hospital stays and maximise care at home, but hitherto the practical need to observe the patient's state of health has extended hospital stays. Similarly there is a drive to minimise for quality of life and economic reasons admission to long-term institutional care and instead extend support to enable living at home. Traditionally any support needed by an individual has normally been provided by family members, often assisted by the local community, while social services have been the fall back provider when the family cannot support, either by direct provision or by mobilising specific services such as delivered hot meals. Housing agencies and other bodies have also had an important role. However, other demographic changes are significantly reducing the capacity of families to provide daily ongoing support. This means that health services are increasingly providing long-term monitoring and support to those living with chronic disease and frailty, while social services are increasingly needed to provide ongoing support. Many individual citizens are necessarily in receipt of both health and social care support, yet in all but a very few European countries these services are provided quite independently one from another, with minimal day to day liaison. A number of drivers for change are now necessitating significant change, and the social sciences have a key role to play in enabling successful progress. At a macro level, across Europe the combination of the economic downturn and the demographic-led increase in demand means that health and social care services are under ever increasing pressures, while constant growth of services is not affordable nor will the labour market support ever continuing expansion. This paper presents the case for systematic research activity in the social sciences, at European and national levels, to further the interlinked citizen- focused objectives of:close integration at delivery level of health care and social care support of individual's health, personalisation of care delivery including reasonable accommodation of individual choice, ensuring effective use of ICT applications based on user acceptability, bringing processes of consent, delegation, representation, coordination and privacy into the electronic era, ensuring respect for and teamwork with formal carers and the informal care team, ensuring equity in an electronic era regardless of digital literacy, assets and connectivity, examining stable and sustainable models of trusted infrastructure provision, establishing governance, authentication, management, and sustainability principles

Health Self-Management Applications in the Work Environment:The Effects on Employee Autonomy

Organizations increasingly use Health Self-Management Applications (HSMAs) that provide feedback information on health-related behaviors to their employees so that they can self-regulate a healthy lifestyle. Building upon Self-Determination Theory, this paper empirically investigates the basic assumption of HSMAs that their self-management feature provides employees with autonomy to self-regulate their health-related behavior. The two-phase experimental study contained a 4-weeks HSMA intervention in a healthcare work environment with a feedback factor (performance vs. developmental) and pretest and posttest measurements of participants' perceived autonomy. Following the experiment, interviews were conducted with users to gain an in-depth understanding of the moderating roles of feedback and BMI (a proxy for health) in the effects of HSMA on perceived autonomy. Findings reveal that the use of an HSMA does not significantly increase perceived autonomy, and may even reduce it under certain conditions. Providing additional developmental feedback generated more positive results than performance feedback alone. Employees with higher BMI perceived a greater loss of autonomy than employees with lower BMI. The reason for this is that higher-BMI employees felt external norms and standards for healthy behavior as more salient and experienced more negative emotions when those norms are not met, thereby making them more aware of their limitations in the pursuit of health goals

Involving children and young people in paediatric research priority setting:a narrative review

OBJECTIVE: The objective of this study is twofold: first, to describe the methods used when involving children and young people (CYP) in developing a paediatric research agenda and, second, to evaluate how the existing literature describes the impact of involving CYP. We distinguish three forms of impact: impact on the research agenda (focused impact), impact on researchers and CYP (diffuse impact) and impact on future research (research impact). DESIGN: A narrative review of MEDLINE, PsycINFO, Web of Science and Google Scholar was conducted from October 2016 to January 2022. The included studies involved at least one CYP in developing a research agenda and were published in English. RESULTS: 22 studies were included; the CYP involved were aged between 6 years and 25 years. Little variation was found in the methods used to involve them. The methods used were James Lind Alliance (JLA) approach (n=16), focus groups (n=2), workshop (n=2), research prioritisation by affected communities (n=1) and combined methods (n=1). Impact was rarely described: focused impact in nine studies, diffuse impact in zero studies and research impact in three studies. CONCLUSION: This study concludes that the JLA approach is most frequently used to involve CYP and that all methods used to involve them are rarely evaluated. It also concludes that the reported impact of involving CYPs is incomplete. This study implies that to convince sceptical researchers of the benefits of involving CYPs and to justify the costs, more attention should be paid to reporting these impacts