Agnes LeuUniversity of Basel | UNIBAS · Institute for Bio- and Medical Ethics Basel (IBMB)
Agnes Leu
Prof. Dr. habil.
About
52
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Citations since 2017
Publications
Publications (52)
Young carers provide a substantial amount of care to family members and support to friends, yet their situation has not been actively addressed in research and policy in many European countries or indeed globally. Awareness of their situation by professionals and among children and young carers themselves remains low overall. Thus, young carers rem...
This paper examines the health-related quality of life (HRQL) and mental health of adolescent young carers (AYCs) aged 15–17 in Switzerland, based on data collected within the Horizon 2020 project ‘Psychosocial support for promoting mental health and well-being among AYCs in Europe’ (ME-WE). It addresses the following questions: (1) Which character...
Many children under the age of 18 are drawn into unpaid caring roles because they live in families where there is chronic illness, mental health problems or substance misuse, and because other alternatives are not available. Many of these children, widely referred to as 'young carers', provides regular and significant amounts of care, often 'hidden...
Few studies have investigated professionals’ awareness of young carers (YCs). Therefore, the main aim of this study was to explore school professionals’ awareness of YCs. The secondary aim was to compare professionals’ responses according to their occupation. A total of 2658 professionals took part in this study by completing an online questionnair...
Background:
Young carers (YC) and young adult carers (YAC) have become of interest in research and practice. The 18-item Multidimensional Assessment of Caring Activities for Young Carers (MACA-YC18) was developed for identifying the extent and nature of caring activities across six domains: domestic chores, household management, financial/practica...
Young carers are children and adolescents who provide care to other family members or friends, taking over responsibilities that are usually associated with adulthood. There is emerging but still scarce knowledge worldwide about the phenomenon of young carers and the impact of a caring role on their health, social and personal development spheres....
Studies that have investigated the health-related quality of life (HRQoL) of adolescents facing a parental illness showed inconsistent results, and none used a person-oriented approach allowing for a deeper understanding of their experience. The aim of this study was to compare the HRQoL of adolescents facing a parental illness to that of their pee...
For the first time, this article will provide a cross-national profile of adolescents who provide unpaid care to their ill or disabled family members in six European countries with varied levels of awareness, policy and service provision regarding adolescent young carers. Utilising an online survey, 2,099 adolescent young carers were identified in...
Adolescent young carers have been described as a hidden group at risk of mental health problems. However, research has not yet clarified the effect of caring when considering the related family situation. We aimed to examine the impact of a caring role on adolescents’ mental health and to gain knowledge about adolescent young carers’ specific needs...
Carers (including young carers) experiencing negative outcomes due to their caring role are more likely to report a lower sense of coherence. This article explores young carers’ support needs for support provided by professionals. A total of 20 interviews with young carers and the persons for whom they provide care were analysed by applying Antonov...
Although prior research has shown that young carers may perceive benefits from their challenging situation, it is unclear how and when benefit finding leads to better mental health. This study examines pathways through which benefit finding may influence mental well-being. Self-reported data were obtained from 601 adolescents aged 15–21 (Mage = 17....
Despite some national examinations of policy responses for young carers (YCs), this study provides a first comprehensive cross-national comparison of the different legislation, policy and service frameworks that exist to protect and support adolescent young carers (AYCs) in six European countries (Italy, Netherlands, Slovenia, Sweden, Switzerland a...
Objective
Research has shown that some young carers face many negative consequences because of their caring experiences, whereas others seem to be unaffected or even report greater well-being. To understand how caring for a family member or close friend can have these different effects, this study compared benefit finding between young carers and t...
Background
The situation of children, adolescents, young adults with caring responsibilities and their families has only recently been addressed in the Swiss context. Initial findings show a low level of awareness among professionals towards young people with caring responsibilities, and also a lack of specific support services nationally for young...
Young carers (YCs) are children and adolescents who provide a significant help to family member(s) with a disease or a disability. They often remain hidden, especially in France where awareness levels and policy responses regarding YC are just emerging. Several studies show that YC often have difficulties at school because of their situation. Howev...
Background
Across Europe, young carers (YCs) and their need for support receive limited attention in the media, policy and empirical research, even though, similar to adult carers, they also provide care to ill family members. The Delphi study, a qualitative research methodology, which provides the focus for this article, had the overall aim of exp...
Although up to 8% of European youngsters carry out high-intensity care for a family member, adolescent young carers (AYCs), especially those caring for their grandparents (GrPs), remain an under-researched group. This study aimed at addressing the current knowledge gap by carrying out an online survey in Italy, the Netherlands, Slovenia, Sweden, Sw...
Findings from international research emphasis the need of these young people to be identified and recognised. Therefore, a nationwide quantitative study of professionals' awareness was conducted in the Swiss context. Data were collected from professionals working in education, healthcare and social services. The study examined professionals’ famili...
Background
Across Europe there is limited attention paid in media, policy and empirical research to the situation of young carers (YCs) and their needs for support, while similarly to adult carers, they provide care to ill family members. The Delphi study, which provides the focus for this article, had the overall aim of exploring existing successf...
Background Across Europe, young carers (YCs) and their need for support receive limited attention in the media, policy and empirical research, even though, similar to adult carers, they also provide care to ill family members. The Delphi study, a qualitative research methodology, which provides the focus for this article, had the overall aim of exp...
Background Across Europe, young carers (YCs) and their need for support receive limited attention in the media, policy and empirical research, even though, similar to adult carers, they also provide care to ill family members. The Delphi study, a qualitative research methodology, which provides the focus for this article, had the overall aim of exp...
Many children, adolescents, teenagers, and young adults have caring responsibilities for parents and family members. These young carers and young adult carers are present in every country. Their responsibilities include domestic chores as well as intimate personal care and other forms of helping which are generally seen as the responsibility of adu...
Im Januar 2018 startete ein grosses, transnationales Forschungsprojekt zu betreuenden und pflegenden Jugendlichen-auch Young Carers ¹ genannt. Die Schweiz ist eines der sechs daran beteiligten europäischen Länder. Im Rahmen des Forschungsprojekts wurden Expert*innen aus dem Gesundheits-, Bildungs-und Sozialwesen befragt, um die Bedürf-nisse und Unt...
Background:
Switzerland recently introduced Acute and Transitional Care (ATC) as a new financing option and a preventive measure to mitigate potential side effects of Swiss Diagnosis Related Group (SwissDRG). The goal of ATC was to support patients who after acute treatment at a hospital require temporary increased professional care. However, evid...
Background
In 2012, Switzerland introduced the diagnosis-related group hospital payment system. Fearing that vulnerable patients may be discharged early, Acute and Transitional Care (ATC) was introduced to address the nursing care of patients who no longer needed an acute hospital stay. ATC is more costly for patients when compared to other dischar...
Introduction
Children and adolescents with caring responsibility who are looking after a family member or a person close are often hiding from the view of the public. They are not well recognised from professionals from health care, education and social services. Several research as well as support programmes have been initiated within the last yea...
An online survey of children in school grades 4–9 (mostly aged 10–15) was conducted in order to determine the prevalence of young carers in Switzerland using a 2‐stage stratified sampling approach. 4082 respondents were drawn from 230 schools. A total of 3991 respondents were included in the analysis and of these 307 (7.7%) were identified as young...
Although there is already general recognition of the fact that many relatives provide unpaid care for family members, there is still little awareness that children, adolescents and young adults under 25 also provide such care. Until recently, the situation of young carers and young adult carers, as those young persons are referred to in internation...
While political and public interest in providing support for family carers is growing, so called young carers and young adult carers—young persons under the ages of 18 and 25 respectively—mostly remain unrecognised. Yet, this vulnerable group is in need of special attention and support from professionals in order to get along with the situation of...
Schülerinnen und Schüler, die schulabsent sind und pflegende Tätigkeiten für psychisch oder physisch erkrankte Angehörige übernehmen, sind in Deutschland und der Schweiz eine bisher wenig beachtete Zielgruppe in Forschung und Praxis. Erfahrungen aus anderen Ländern zeigen, dass eine interdisziplinäre Zusammenarbeit unter Einbezug der gesamten Famil...
Background:
In Switzerland, the issue of young carers and young adult carers - young people under the age of 18 and 24 respectively, who take on significant or substantial caring tasks and levels of responsibility that would usually be associated with an adult - has not been researched before. The number of these younger carers is unknown, as is t...
On the 1st of January 2012, Switzerland introduced the diagnosis-related group hospital tariff structure (SwissDRG). It was recognised that healthcare provided to the most vulnerable patient groups would be a challenge for the new SwissDRG. Coincident with the implementation of SwissDRG, we explored hospital experts' perceptions of which patient gr...
The reality for many families where there is chronic illness, mental health problems, disability, alcohol or substance misuse is that children under the age of 18 are involved in caring. Many of these children – known as ‘young carers’ – will be providing regular and significant care, either episodically or over many years, often ‘hidden’ to health...
To examine medicolegal stakeholders' views about the impact of professional liability insurance in Switzerland on medical error disclosure.
Purposive sample of 23 key medicolegal stakeholders in Switzerland from a range of fields between October 2012 and February 2013. Data were collected via individual, face-to-face interviews using a researcher-d...
The starting point of the interdisciplinary project "Assessing the impact of diagnosis related groups (DRGs) on patient care and professional practice" (IDoC) was the lack of a systematic ethical assessment for the introduction of cost containment measures in healthcare. Our aim was to contribute to the methodological and empirical basis of such an...
Until the 1990s, the roles that children and young people undertake in providing informal family care received virtually no academic or policy recognition. If awareness of these children did exist, they were generally referred to as “young carers,” although different countries have different phrases (for example, “young caregivers” in the United St...
To establish at what stage Swiss hospitals are in implementing an internal standard concerning communication with patients and families after an error that resulted in harm.
Hospitals were identified via the Swiss Hospital Association's website. An anonymous questionnaire was sent during September and October 2011 to 379 hospitals in German, French...
Projects
Projects (6)
The project comprises a qualitative survey of children, adolescents, young adults and professionals and the development of a specific tool for professionals in healthcare and social services.
For more details, see: http://www.careum.ch/youngcarers-ebnet
The goal of the Horizon 2020 Project “Psychosocial Support for Promoting Mental Health and Well-being among Adolescent Young Carers in Europe (ME-WE)” is to strengthen the resilience of AYCs, to improve their mental health and well-being, and mitigate the negative influences of psychosocial and environmental factors.
It has three specific objectives:
- to systematise knowledge on AYCs
- to co-design, test and deliver psychosocial interventions, including an information and communication technology (ICT) intervention in six countries (Italy, Netherlands, Slovenia, Sweden, Switzerland, United Kingdom)
- to evaluate what works and provide knowledge translation actions at national, European and international levels
In this project, we seek to obtain quantitative and qualitative data that will help to develop appropriate support structures for young carers and young adult carers transitioning from education to professional career.
