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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 Kalaidos Fachhochschule Departement Gesundheit
Institution of higher education Kalaidos University of Applied Sciences - FHKD
Main discipline Legal sciences
Start/End 01.10.2015 - 30.09.2019
Approved amount 600'000.00
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All Disciplines (3)

Legal sciences
Social Paediatrics

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)

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


Associated projects

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


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).