Young Carers and Young Adult Carers in Switzerland

Quantitative and qualitative research funded by Swiss National Science Foundation

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The project funded by Swiss National Science Foundation evaluates the nature and intensity of the care given by children, adolescents and young adults. The project contains standardized interviews with 3,900 pupils in schools to identify the proportion and characteristics of pupils who are carers, an online survey to investigate the knowledge about young carers and young adult carers of professionals in health and social services (e.g. GPs, A&E departments, protection authorities for children and adults), and semi-structured qualitative interviews with young carers and their relatives within 20 families to validate the results from the quantitative sub-projects.

The project is part of the international research about young carers and is realised in close cooperation with Prof. Dr. Saul Becker, University of Birmingham. Further projects are planned to evaluate and compare the legal framework in Switzerland and other countries with a transnational focus.

Background

In 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. 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. 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. British studies 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. Other studies 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. Further studies refer to a sense of "stigma by association" (particularly if parents have mental health problems, misuse alcohol or drugs, or have HIV/AIDS) and 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. Because it is very well known and researched that chronic illnesses not only affect the sick person, but also affect the entire family system, the situation of young carers and young adult carers requires special attention.

Careum Research possesses long-standing expertise on caring relatives. Since 2007, research and practice projects have studied the compatibility of professional activity and care for relatives, which is labelled as "work & care". But questions of compatibility arise during the entire course of life. Therefore reliable data is needed on the situation of children, adolescents and young adults in Switzerland who take on a caring role and therefore are confronted with the challenge of "learn & care". Data based on these facts is the basis for developing specific schemes.

Quantitative and qualitative research funded by Swiss National Science Foundation

Objectives

  1. 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. Make recommendations for supportive programmemes 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.
  5. Develop various practical tools for health, social and education services, test these tools, and implement models of good practice.
  6. Make young carers in Switzerland visible and increase the awareness of this group amongst professionals and the public.

Methods of the different project parts

The project comprises three stages: (1) a national Swiss-wide online survey to examine the awareness of younger carers amongst the Swiss population with a particular focus on professional populations; (2) an online survey of 3,900 Swiss pupils in schools using standardised instruments to identify the proportion and characteristics of pupils who are carers; and (3) semi-structured interviews with 20 young carers and their ill family members.

Project information

Duration: October 2015 until October 2018
Programme Director: Prof. FH Dr. iur. Agnes Leu

External funds: SNF Money Follows CH-UK, 10001AM_160355
Lay summary in resarch database P3: p3.snf.ch

Other project members:
Dr. Kurt Albermann, Chief Physician, Specialist for child and adolescent psychiatry, psychotherapy, child and adolescent medicine FMH, Winterthur, Switzerland
Prof. Dr. Urs Moser, Head of Institute for Educational Evaluation, University of Zurich, Switzerland
Daniel Hofer, Principal, Bildungszentrum Gesundheit und Soziales bz-gs, Olten, Switzerland