Conference: Young Carers in Switzerland

In a nutshell: The SNSF End of Project Conference on the Careum Campus on 12 November 2019 presents new research results from Switzerland and other countries about young carers. Not only will experts have their say, but also young carers will contribute. As the conference is international, this blog post is in English.

Children, adolescents and young adults who regularly take care of persons close are internationally referred to as «young carers» (under 18 years) or «young adult carers» (under 25 years). Until recently, Switzerland lacked reliable data on the situation of young carers.

Since 2014, Professor Agnes Leu and her team at Careum School of Health have been working intensively with these young people in a research and development program lasting for several years.

The aim of the various young carers research projects is

  • to develop concrete support instruments,
  • to raise awareness of professionals and
  • enlarge their occupational network.

First – a big thank you, SNSF!

No research is ever possible without support: The research project «Young Carers and Young Adult Carers in Switzerland» closing this research gap is funded by the Swiss National Science Foundation, SNF Money Follows CH – UK No 10001AM_160355 . The research team proudly presents the results at the SNSF End of Project Conference, which takes place in Zurich on 12th November 2019.

The conference includes

  • a international classification of in-country awareness and policy responses to young carers,
  • the results on awareness among professionals in Switzerland,
  • the results of the national prevalence study,
  • support needs of young carers and their families,
  • testimonials from young carers,
  • and approaches for the further development of a national young carers strategy.

Who are young carers?

The following short video, developed for the Horizon2020 Me-We project, in which Careum School of Health is participating as a partner in Switzerland, explains who young carers are and how their prevalence is in Switzerland:

The Me-We project
The Me-We project (Psychosocial support for promoting mental health and wellbeing among adolescent young carers in Europe), funded by the European Union through the EU Framework Programme for Research and Innovation HORIZON 2020, in which Careum School of Health is participating as a partner in Switzerland, further develops the international knowledge exchange. The project is developing a new body of research on the characteristics and needs of young carers, on the legal and policy frameworks which can support and protect them, and on the best practices existing in six European countries.
More information on the Me-We project can be found here.

Research and evaluation strategy

Since 2014, the Swiss Young Carers Research Group has started to develop a body of research evidence and to raise awareness on this specific target group. The strategic approach presents as follows:

Young carers in different countries

Leu & Becker (2017) showed in their classification (see table below) that there is a range of different responses to the issue of young carers across different countries. This varies from support for the young people in policy and legislation to a total lack of recognition and no support. Switzerland finds itself on an emerging level in regard to its national awareness and policy responses to young people with care responsibilities.

Classification of in-country awareness and policy responses to young carers

Levels 1–7 Characteristics Country Example
Level 1
Incorporated/
Sustainable
▪ Extensive awareness at all levels of government and society of the experiences and needs of young carers
▪ Sustained and sustainable policies and interventions aimed at meeting young carers’ needs and promoting their health, well-being and development
▪ Responses and law built on a foundation of reliable research evidence and clear legal rights
None
Level 2
Advanced
▪ Widespread awareness and recognition of young carers amongst public, policy makers and professionals
▪ Extensive and reliable research base and growing
▪ Specific legal rights (national)
▪ Extensive codes and guidance for welfare professionals and national and local strategies
▪ Multiple dedicated services and interventions nationwide
United Kingdom
Level 3 Intermediate▪ Some awareness and recognition of young carers among public, policy makers and professionals
▪ Medium-sized research base, and growing
▪ Partial rights in some regions
▪ Small but developing body of professional guidance
▪ Some dedicated services and interventions, mostly local but a few nationwide
Australia
Norway
Sweden
Level 4 Preliminary▪ Little public or specialist awareness and recognition of young carers
▪ Limited research base, but growing
▪ No specific legal rights, but other laws may be applicable or relevant
▪ Few, if any, dedicated services or interventions at national or local levels
Austria
Germany
New Zealand
Level 5 Emerging▪ Growing public or specialist awareness and recognition of young carers
▪ Small but growing research base
▪ No specific legal rights, but other laws may be applicable or relevant
▪ No specific services or interventions for young carers, but other services might be applicable
Belgium
Ireland
Italy
Sub-Saharan Africa

Switzerland
Netherlands
United States
Level 6
Awakening
▪ Embryonic awareness of young carers as a distinct social group within the «vulnerable children» populationGreece
Finland
United
Arab Emirates
France
Level 7
No response
▪ No apparent awareness or policy response to young carers as a distinct social group All other countries
Climbing up the ladder of support

The better the knowledge…

The existence of a robust country-specific research evidence base provides an important foundation for policy developments and service responses. Policy-makers may prefer to have a home-grown research evidence base to inform their local and national decisions rather than drawing or relying on research from other countries, even when research findings are or are likely to be similar.

The more developed and country-specific the research is, the more advanced the policy and legal frameworks appear to be. However, whilst country-specific research is important, the exchange of ideas and experiences between countries enables the transfer of knowledge and the generation of new ideas.

The classification created by Leu and Becker helps to create an international research body that brings together leading academics and practitioners from around the world who work collaboratively to share knowledge, ideas, research and best practices for the benefit of young carers globally.

During the conference «Young Carers in Switzerland», six experts explain how young carers are supported in their own countries, in order to allow an international comparison (see slides below).

Next steps to support young carers

Studies have shown that in all the countries under analysis, including Switzerland, there is a lack of visibility and awareness about young carers. In order to better support young carers, their role and their needs should be first identified and recognized.

Several approaches can be used to support young carers. Some of them have emerged through expert interviews carried out in the Horizon 2020 Me-We project. For instance, some possible approaches are the following:

  • supporting social interactions,
  • a strong group identity and the possibility of sharing experiences, for example through the creation of peer-support groups;
  • delivering information relevant for the young carers, for example about events, interventions and activities targeting young carers;
  • and providing direct and indirect access to professionals.

In order to discuss how young carers can be better supported, the following Swiss experts are invited at the conference «Young Carers in Switzerland» for a panel discussion:

In panel, the experts discuss key questions with current young (adult) carers and former young carers.

This blog post was created in collaboration with Elena Guggiari.


Conference folder

Conference slides

Learn more

Let’s discuss (in English or German!)

  • Do you have experience as a young carer yourself? How did your role affect your life? How did you deal with your situation?
  • What is required from your point of view for experts to better identify young carers?
  • What kind of support would you have expected from social and health professionals?

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Agnes Leu

Prof. Dr. iur. Agnes Leu ist promovierte Rechtswissenschaftlerin (UZH) (Sozialversicherungs- und Gesundheitsrecht), habilitierte Medizinethikerin (UniBas) und Programmleiterin Forschungsprogramm «Young Carers» an der Careum Hochschule Gesundheit. Ihre Forschungsschwerpunkte sind SwissDRG und vulnerable Patientengruppen sowie Kinder, Jugendliche und junge Erwachsene als pflegende Angehörige (Young Carers) in der Schweiz und international.

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