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Kinder, Jugendliche und junge Erwachsene als pflegende Angehoerige in der Schweiz

English title Young carers and young adult carers in Switzerland
Applicant Leu Agnes
Number 160355
Funding scheme Project funding (Div. I-III)
Research institution Departement Gesundheit Fachhochschule Kalaidos
Institution of higher education Kalaidos University of Applied Sciences - FHKD
Main discipline Legal sciences
Start/End 01.10.2015 - 30.11.2019
Approved amount 600'000.00
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All Disciplines (3)

Discipline
Legal sciences
Social Paediatrics
Sociology

Keywords (17)

young carers; factors; children; family members; assistance; chronical; coexistence; adolescents; concept; support; impact; ill; young adult carers; carers; disabled; nursing; caring

Lay Summary (German)

Lead
Das Projekt erforscht quantitativ und qualitativ die Natur und Charakteristik von pflegenden Kindern, Jugendlichen und jungen Erwachsenen in der Schweiz. Mit quantitativen Methoden werden sowohl Schülerinnen und Schüler als auch Fachpersonen aus dem Gesundheits- und Bildungsbereich befragt. Hinzu kommen qualitative Interviews mit Kindern bzw. Jugendliche und ihren pflegebedürftigen Angehörigen.
Lay summary

Dass in der Betreuung pflegebedürftiger Angehöriger auch Kinder, Jugendliche und junge Erwachsene unter 25 Jahren tätig sind, ist noch kaum bekannt. In der Schweiz besteht zu ihrer Situation eine Forschungslücke. Es sind weder die Anzahl der pflegenden Kinder und Jugendlichen noch die Art und der Umfang ihrer Aufgaben sowie deren Auswirkungen auf sie bekannt. Mit standardisierten Instrumenten werden 3900 Schülerinnen und Schüler befragt, um Anzahl und Aufgaben pflegender Kinder und Jugendlicher quantitativ zu erheben. Im Rahmen eines landesweiten Online-Surveys wird das Bewusstsein von Fachpersonen aus dem Gesundheits- und dem Bildungsbereich zur Situation pflegender Kinder und junger Erwachsener untersucht. Mit semi-strukturierten qualitativen Interviews werden Kinder bzw. Jugendliche und ihre pflegebedürftigen Angehörigen in 20 Familien befragt, um die Ergebnisse aus den quantitativen Teilprojekten zu validieren. Das Projekt ordnet sich in enger Zusammenarbeit mit der University of Birmingham in die internationale Young Carers-Forschung ein. Auf der Basis dieser quantitativen und qualitativen Ergebnisse werden Empfehlungen und konkrete Instrumente erarbeitet, um Fachpersonen darin zu unterstützen, die Zeichen der Pflege- und Unterstützungstätigkeit bei Kindern und Jugendlichen zu erkennen und präventiv zu agieren oder behandelnd zu reagieren.

 
Direct link to Lay Summary Last update: 08.07.2015

Responsible applicant and co-applicants

Employees

Publications

Publication
Young Carers Research, Practice and Policy: An Overview and Critical Perspective on Possible Future Directions
Joseph Stephen, Sempik Joe, Leu Agnes, Becker Saul (2019), Young Carers Research, Practice and Policy: An Overview and Critical Perspective on Possible Future Directions, in Adolescent Research Review, 1-13.
Who are „Young Carers”? Analysis of the Use of the Term in German Speaking Countries and Development of a Definition / Wer sind Young Carers? Analyse der Begriffsverwendung im deutschsprachigen Raum und Entwicklung einer Definition
Frech Marianne, Nagl-Cupal Martin, Leu Agnes, Schulze Gisela C., Spittel Anna-Maria, Kaiser Steffen (2019), Who are „Young Carers”? Analysis of the Use of the Term in German Speaking Countries and Development of a Definition / Wer sind Young Carers? Analyse der Begriffsverwendung im deutschsprachigen Raum und Entwicklung einer Definition, in International Journal of Health Professions, 6(1), 19-31.
Young Carers
Leu Agnes, Becker Saul (2019), Young Carers, in Montgomery Heather (ed.), Oxford University Press, New York, nd-nd.
Counting Young Carers in Switzerland - A Study of Prevalence
Leu Agnes, Frech Marianne, Wepf Hannah, Sempik Joe, Joseph Stephen, Helbling Laura, Moser Urs, Becker Saul, Jung Corinna (2019), Counting Young Carers in Switzerland - A Study of Prevalence, in Children & Society, 33(1), 53-67.
Study protocol: young carers and young adult carers in Switzerland
Leu Agnes, Jung Corinna, Frech Marianne, Sempik Joe, Moser Urs, Verner Martin, Becker Saul (2018), Study protocol: young carers and young adult carers in Switzerland, in BMC Health Services Research, 18(1), 183-183.
“You don't look for it”-A study of Swiss professionals’ awareness of young carers and their support needs
Leu Agnes, Frech Marianne, Jung Corinna (2018), “You don't look for it”-A study of Swiss professionals’ awareness of young carers and their support needs, in Health & Social Care in the Community, 26(4), e560-e570.
Gesamtfamiliale Unterstützung bei schulabsentem Verhalten pflegender Kinder und Jugendlicher
Kaiser Steffen, Schulze Gisela C., Leu Agnes (2018), Gesamtfamiliale Unterstützung bei schulabsentem Verhalten pflegender Kinder und Jugendlicher, in Ricking Heinrich, Speck Karsten (ed.), Springer Fachmedien Wiesbaden, Wiesbaden, 185-198.
Young carers and young adult carers in Switzerland: Caring roles, ways into care and the meaning of communication
Leu Agnes, Frech Marianne, Jung Corinna (2018), Young carers and young adult carers in Switzerland: Caring roles, ways into care and the meaning of communication, in Health & Social Care in the Community, 26(6), 925-934.
Länderspezifisches Bewusstsein zur Situation von Young Carers. Eine globale Betrachtung
LeuAgnes, BeckerSaul (2017), Länderspezifisches Bewusstsein zur Situation von Young Carers. Eine globale Betrachtung, Zentrum für Qualität in der Pflege, Berlin, 31-35.
A cross-national and comparative classification of in-country awareness and policy responses to ‘young carers’
Leu Agnes, Becker Saul (2016), A cross-national and comparative classification of in-country awareness and policy responses to ‘young carers’, in Journal of Youth Studies, 20(6), 750-762.
Erwachsene, Jugendliche und junge Erwachsene als pflegende Angehörige in der Schweiz
Leu Agnes, Jung Corinna, Frech Marianne (2016), Erwachsene, Jugendliche und junge Erwachsene als pflegende Angehörige in der Schweiz, in Paediatrica, 27(2), 1-3.
Grosse Verantwortung auf schmalen Schultern
FrechMarianne, Rabhi-SidlerSarah, LeuAgnes, Grosse Verantwortung auf schmalen Schultern, in Fachzeitschrift für Kindergarten und Unterstufe, 6, 28-29.

Collaboration

Group / person Country
Types of collaboration
Universität Zürich Switzerland (Europe)
- in-depth/constructive exchanges on approaches, methods or results
- Publication
- Research Infrastructure
- Exchange of personnel
Universität Sussex Great Britain and Northern Ireland (Europe)
- in-depth/constructive exchanges on approaches, methods or results
- Publication
- Research Infrastructure
- Exchange of personnel
Dr. med. Kurt Albermann, KSW Switzerland (Europe)
- in-depth/constructive exchanges on approaches, methods or results
- Publication

Scientific events

Active participation

Title Type of contribution Title of article or contribution Date Place Persons involved
End of Project Conference "Young Carers in Switzerland" Internationale Fachtagung und Vorstellung der SNF Projektergebnisse Talk given at a conference Einblick in die nationalen Forschungsergebnisse 12.11.2019 Zürich, Switzerland Berger Fabian; Rabhi-Sidler Sarah; Frech Marianne; Leu Agnes; Becker Saul;
Swiss Public Health Conference Talk given at a conference Adolescent and Young Adult Carers - A vulnerable population challenged in many ways 29.08.2019 Winterthur, Switzerland Rabhi-Sidler Sarah; Leu Agnes;
1er colloque français sur les jeunes aidants Talk given at a conference Country’s Awareness and Policy Responses to Young Carers. A Strategic Approach in Switzerland and Potential for Development in France 24.06.2019 Paris, France Leu Agnes;
«It Takes a Village...» Talk given at a conference Young Carers: Raising Awareness in Switzerland. 15.05.2019 Oslo, Norway Leu Agnes; Frech Marianne;
«It Takes a Village...». Poster Please keep in Mind! Model of Support for Young Carers 14.05.2019 Oslo, Norway Leu Agnes; Frech Marianne;
fPmh Kongress Poster Young Carers in Switzerland - Why and How should physicians identify them? 24.05.2018 Lausanne, Switzerland Leu Agnes; Frech Marianne; Jung Corinna;
7th International Carers Conference Poster Do we know what they need? Identifying young carers' and young adult carers' needs. 05.10.2017 Adelaide, Australia Leu Agnes; Frech Marianne;
7th International Carers Conference Talk given at a conference Who cares? Findings from a Quantitative Survey of Professionals' Awareness of Young Carers in Switzerland. 05.10.2017 Adelaide, Australia Frech Marianne; Jung Corinna;
2nd International Young Carers Conference «Every Child has the Right to…» Talk given at a conference Young Carers and Young Adult Carers Research in Switzerland – first results and practice tool for professionals 29.05.2017 Malmö, Sweden Leu Agnes; Frech Marianne;
2nd International Young Carers Conference «Every Child has the Right to…». Talk given at a conference Young Carers and Young Adult Carers in Switzerland. Strategic Approach and First Findings 29.05.2017 Malmö, Sweden Leu Agnes; Jung Corinna; Frech Marianne;
Young Carers Seminar Talk given at a conference Country’s Awareness and Policy Responses to Young Carers. A Strategic Approach in Switzerland 11.05.2017 Helsinki, Finland Leu Agnes;
Pflege Gipfeltreffen: Wissen-Energie-Fürsorge/Caring. SBK-Kongress Talk given at a conference International – Interprofessionell – Interinstitutionell: Triple I in der Young Carers Forschung. Kinder, Jugendliche und junge Erwachsene als pflegende Angehörige in der 01.06.2016 Davos, Switzerland Leu Agnes;
Kongress für Gesundheitsberufe Poster Triple I in der Young Carers Forschung in der Schweiz: Interprofessionell – International – Interinstitutionell: Ohne Vernetzung kommt der Stein nicht ins Rollen. Posterpräsentation. 04.03.2016 Inselspital, Bern, Switzerland Frech Marianne; Leu Agnes;
Eurocarers Workshop: Supporting Young Carers in Europe Talk given at a conference Classification of in-country Awareness and Policy Responses to Young Carers. 18.02.2016 Hamburg, Germany Leu Agnes;


Self-organised

Title Date Place
SNF International Exploratory Workshop Caregiving by family and friends along the lifespan 22.05.2017 Careum, Zürich, Switzerland

Knowledge transfer events

Active participation

Title Type of contribution Date Place Persons involved
Young Carers in der Schweiz. Lehrabschlussfeier Spicura Talk 11.07.2019 Zürich, Switzerland Leu Agnes;
Young Carers - betreuende Kinder und Jugendliche in der Schweiz Talk 06.06.2019 Solothurn, Switzerland Leu Agnes; Frech Marianne;
Young Carers – betreuende Kinder und Jugendliche in der Schweiz. Kontaktstelle Selbsthilfe Kanton Solothurn Talk 06.06.2019 Solothurn, Switzerland Frech Marianne; Leu Agnes;
Young Carers – Junge Menschen begleiten Angehörige. Women’s Forum Talk 28.03.2019 Zürich, Switzerland Leu Agnes;
Country's Awareness and Policy Responses to Young Carers. A Strategic Approach in Switzerland and Potential for Development in France Talk 28.03.2019 Paris, France Leu Agnes;
Young Carers: Kinder und Jugendliche mit Betreuungs- und Pflegeaufgaben. Jubiläumsanlass: Forschungslunch Talk 07.12.2017 Careum Campus, Zürich, Switzerland Jung Corinna; Leu Agnes;
Pflegende Kinder und Jugendliche. Forum palliative vorderland ar Workshop 14.09.2017 Heiden, Switzerland Leu Agnes;
Family Care entlang der Lebensspanne. Pro Infirmis Workshop 30.08.2017 Zürich, Switzerland Leu Agnes;
Pflegende Kinder, Jugendliche und junge Erwachsene in der Schweiz. Austauschtreffen Zentrum für Gender Studies Universität Basel Talk 24.07.2017 Zürich, Switzerland Leu Agnes;
Pflegende Kinder, Jugendliche und junge Erwachsene in der Schweiz Young Carers & Young Adult Carers. Austauschtreffen Gesundheitsförderung Talk 13.06.2017 Bern, Switzerland Leu Agnes;
Rotary Club. Pflegende Kinder, Jugendliche und junge Erwachsene in der Schweiz Talk 05.05.2017 Zürich, Switzerland Leu Agnes;


Self-organised

Title Date Place
Young Carers – «Dialog und Erfahrungsberichte». End of Project Conference 24.03.2017 La Chaux de Fonds, Switzerland

Communication with the public

Communication Title Media Place Year
Media relations: print media, online media «Young Carers ». grosse Verantwortung auf kleinen Schultern Newsletter Amt für Berufsbildung, Mittel-und Hochschulen, Kanton Solothurn. Henzmann, C. German-speaking Switzerland 2019
Media relations: radio, television Daheim Papi duschen statt in den Ausgang SRF German-speaking Switzerland 2019
Media relations: print media, online media Den Vater pflegen statt Karriere machen NZZ am Sonntag German-speaking Switzerland 2019
Media relations: print media, online media Grosse Hilfe von kleinen Händen Schweiz am Wochenende German-speaking Switzerland 2019
Media relations: print media, online media Grosse Hilfe von kleinen Händen. Schweiz am Wochenende. Bangerter, A German-speaking Switzerland 2019
Media relations: print media, online media Pflege der Eltern belastet Schweizer Jugendliche 20 Minuten. Rosner, Y German-speaking Switzerland 2019
Media relations: print media, online media Un jeune sur 10 prend soin d'un proche et en souffre 24 heures Western Switzerland 2019
Media relations: radio, television Wenn die Kindheit auf einen Schlag vorbei ist. Daheim Papi duschen statt in den Ausgang Radio SRF1, Echo der Zeit German-speaking Switzerland 2019
Media relations: radio, television Wenn Jugendliche ihre Angehörigen pflegen SRF 1, Treffpunkt German-speaking Switzerland 2019
Media relations: radio, television Wenn Minderjährige die Eltern pflegen. Zwischen Sorge und Überforderung SWR2 Wissen. Schrum, A. & Aster, E.-L. International 2019
Media relations: radio, television Young Carers: Wenn Jugendliche ihre Angehörige pflegen Treffpunkt SRF1 German-speaking Switzerland 2019
New media (web, blogs, podcasts, news feeds etc.) «Die hohe Zahl hat mich erstaunt!» Hg. v. Careum. Careum Blog. Svec Goetschi, M. German-speaking Switzerland 2018
Media relations: print media, online media Belastung für «Young Carers». Viele Kinder pflegen kranke Angehörige 20 Minuten German-speaking Switzerland 2018
Media relations: print media, online media Junge Pflegende stehen vor vielen Hindernissen. Gesellschaftliches Tabu swissinfo.ch. Leybold-Johnson, I German-speaking Switzerland Western Switzerland Italian-speaking Switzerland 2018
Media relations: print media, online media MS in der Familie. Grosse Verantwortung in kleinen Händen FORTE German-speaking Switzerland 2018
Media relations: radio, television Schwere Last auf schmalen Schultern. Kinder und Jugendliche, die kranke Eltern, Ge SRF, Arnet, H. German-speaking Switzerland 2018
Media relations: print media, online media Viele Kinder kümmern sich um kranke Angehörige NZZ am Sonntag, Donzé, R. German-speaking Switzerland 2018
Media relations: print media, online media Wenn junge Menschen pflegen Behinderung & Politik German-speaking Switzerland 2018
Talks/events/exhibitions Young Carers – «Dialog und Erfahrungsberichte». End of Project Conference Western Switzerland 2017
Media relations: print media, online media Das harte Los pflegender Kinder. Kinder und Jugendliche betreuen kranke Familienmitglieder oft im Ve NZZ, Ellner, S. German-speaking Switzerland 2016
Media relations: print media, online media Helfenden Kindern ein Gesicht geben Zürcher Unterländer. Suboticki, K. German-speaking Switzerland 2016
Media relations: print media, online media Wenn Mama es alleine nicht schafft. Erstmals wird die Situation von Kindern schwerkranker Eltern unt NZZ am Sonntag. Donzé, R German-speaking Switzerland 2016
Media relations: print media, online media «Manchmal bin ich wütend auf Mamis Krankheit»: Betroffene und Fachleute Krankenpflege – Soins infirmiers. Lüthi, U Italian-speaking Switzerland German-speaking Switzerland Western Switzerland 2015
Media relations: print media, online media Pflegende Kinder, Jugendliche und junge Erwachsene sichtbar machen Oltner Tagblatt, Zila, N German-speaking Switzerland 2015
New media (web, blogs, podcasts, news feeds etc.) Young Carers: Wenn junge Menschen pflegen Careum Blog German-speaking Switzerland 2015

Associated projects

Number Title Start Funding scheme
144488 Young carers in Switzerland 01.04.2013 International short research visits

Abstract

1. SUMMARY of the research planI. BACKGROUNDIn recent years, the Swiss health system has been exposed to enormous changes. The new hospital funding since 1st of January 2009 (Art. 49a KVG), and the introduction of the new tariff system SwissDRG within the acute-care hospitals, have increasingly intensified the price and quality competition amongst hospitals. Swiss hospitals are being forced to adjust their business expenses and investments based on the income they receive from the performance-based fixed-rates. To succeed, the hospitals are enhancing their economic focus with reference to the new tariff system of performance-based case rates. They are working towards improving the process quality and an improved interface-management, resulting in the quicker discharge of patients from acute care. The aftercare authorities (rehabilitation clinics, GPs, home care, retirement homes and relatives), as well as referring physicians, need to react quicker and more systematically (Leu et al, 2013). Because of these developments, relatives who take over the care at home are themselves vulnerable to greater burden and stress. In Switzerland in recent years the awareness regarding family carers has increased and more studies have been carried out, especially regarding the strain on carers as well as those focusing on patients’ discharge and the examination of new innovative employment models (Leu & Bischofberger, 2012). Despite this, there is hardly any awareness of the fact that children, adolescents and young adults are also engaged in the care of chronically ill relatives in Switzerland. This group of «Young Carers» and «Young Adult Carers», as they are internationally called, are nearly invisible and difficult to access. A significant body of research evidence shows that many young carers experience a range of negative outcomes. Aldridge and Becker 1999, Aldridge and Becker 2003 and Thastum, et al. 2008 focus on young carers' restricted opportunities for social networking and for developing peer friendships, as well as their limited opportunities for taking part in leisure and other activities. Becker and Becker 2008 refer to poverty, social exclusion, and the difficulties that young carers face in their transitions to adulthood and adult services. Educational problems (poor attendance or punctuality, underachievement, and bullying, discussed in the section on Impact on Education) are also identified in much of the research as negative outcomes for a large proportion of young carers. Aldridge and Becker 2003 and Evans and Becker 2009 refer to a sense of "stigma by association" (particularly if parents have mental health problems, misuse alcohol or drugs, or have HIV/AIDS). Dearden and Becker 2000 and Becker and Becker 2008 identify the lack of understanding from peers about young carers' lives and circumstances, the keeping of "silence" and secrets, and the significant difficulties in making a successful transition from childhood to adulthood. Becker and Becker 2008, on transitions, show that the impacts of caring on children can affect not only their childhood but also later life. In one of the earliest studies on young carers' transitions, Dearden and Becker 2000 show that the difficulties of "leaving home" can delay young carers' own independence and exacerbate educational and employment choices and opportunities. Because it is very well known and researched that chronic illnesses not only affect the sick person, but also affect the entire family system (Strauss & Glaser, 1975; Wright & Leahey, 1987) the situation of young carers and young adult carers requires special attention. II. OBJECTIVES1. Investigate the nature and the intensity of children and young people’s caring roles, their pathways into care-giving, and their socio-economic and demographic circumstances, as well as of their families.2. Examine the participation of children, adolescent and young adult carers in education, employment and social activities with friends as well as their future plans.3. Determine the numbers of children, adolescents and young adults who are family carers. The precondition for the creation of appropriate adequate support is the development of a reliable data base.4. Examine the legal parameters affecting children, adolescents and young adults as family carers in Switzerland and on an international level. 5. Make recommendations for supportive programmes for these younger carers, based on existing structures but also involving new structures which are especially oriented to the target group. The pursued objectives are the perception and acceptance of child, adolescent and young adult carers as a social reality in Swiss society; the protection of children's rights and their participation in all spheres of life, which are relevant to their age and maturity; and, as a preventative measure, the welfare and promotion of the health of younger carers as well as the support for the family as a whole. 6. Develop various practical tools for health, social and education services, test these tools, and implement models of good practice.7. Make young carers in Switzerland visible and increase the awareness of this group amongst professionals and the public. III. METHODS OF THE DIFFERENT PROJECT PARTSThe project comprises four stages: (1) a national Swiss-wide online survey to examine the awareness of younger carers amongst Swiss professional populations; (2) a survey using standardised instruments of 3,900 Swiss pupils in schools to identify the proportion and characteristics of pupils who are carers; (3) 48 in-depth interviews with legal and social experts in eight countries with existing engagement with younger carers, to identify the legal structures which recognise, safeguard, protect and promote the health and well-being of young people with caring roles, and the ‘gaps’ between legal intentions and actual practice and outcomes; and (4) in-depth interviews with 20 families comprising ill parents and younger carers, to consolidate and validate the other stages of the study and to hear directly from parents and younger carers about their experiences relating to the areas identified in the objectives above. IV. IMPORTANCE AND IMPACT OF PROJECT The present study fills an important national and international research gap. For the first time it will collect important data on the awareness, extent, nature and impact of caring amongst children and young people in Switzerland, and cross-link these findings with robust evidence from other countries. The study will reveal (a) the extent of awareness of young carers amongst medical, social, health, educational, legal and other groups in Switzerland; (b) the proportion and number of young carers amongst a normative child population, and what these young carers ‘do’ in terms of their caring roles; (c) cross-national analysis of eight countries’ legal structures, policies and interventions for younger carers and the ‘gap’ between legal provision and actual implementation; and (d) direct accounts by families of their care-giving and receiving experiences. The synthesis of these four work packages will enable us to develop evidence-based policy and practice responses to the needs of young carers and their families, aimed specifically at promoting the development, education, health, well-being and future employability of younger carers in Switzerland. The project builds on the expertise of research, methodology, policy and practice from the UK and the international research of Professor Saul Becker, who is regarded as the world expert on young carers. He brings to the Swiss project knowledge, experience, skills and accumulated wisdom which cannot be found anywhere else, to inform all aspects of the project, from research aims, to design, methodology, methods and approaches, data analysis, policy recommendations (see cover letter and Money Follows Co-Operation Line Application attached).
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