Sozialpolitische Studienreihe

Summary - Part 2

At the end of 2012 a study, commissioned by the Federal Ministry of Labour, Social Affairs and Consumer Protection, had been released which focused on the situation of children and adolescents with caring responsibilities. Hereby, for the first time in Austria, public attention was drawn to a group of people that had not been recognized as such up till then. According to this study, more than 40. 000 children and adolescents in Austria regularly hold responsibilities, in terms of long-time care, for a family member with a chronic illness. Involved tasks and duties are diverse and, regarding their intensity and nature, exceed what is appropriate for the age and development of the persons concerned (Nagl-Cupal et al. 2012). Consequently, caring responsibilities of children and adolescents are directly associated with negative effects on health and social behaviour.

From awareness to support

The published study concluded with an outlook on how to face the phenomenon of young carers in Austria. Essentially, it can be summarized by three major actions to be taken: Raising awareness, identification of those affected in their immediate living environments and the development of support programmes. In order to contribute to this, the Department of Nursing Science at the University of Vienna was appointed to develop interventions which are supposed to demonstrate how young carers and their families can be supported.

Purpose of the Study

The purpose of the present paper was to develop a fundamental framework as a basis to provide support for young carers and their families. Hereby, it can be shown which particular programmes can be applied in order to aid and support young carers and their families. At the same time, the established framework functions as guidance for those institutions intending to implement target group-specific and need-oriented support programmes for young carers.

Methodological Approach

The depiction of support programmes and the development of the framework were based on existing knowledge about the necessities of young carers by means of the following steps:

  • State-of-the-art research in major scientific data bases
  • Review of the internet presence of existing young carers’ projects
  • Site-visits of selected young carers’ projects und interviews with those responsible
  • Inclusion of national and international expert knowledge in form of a workshop and a conference

Framework

The framework to support young carers and their families can be demonstrated by means of a logical model which consists of the following components: Presuming factors, resources, interventions, immediate activities, outcomes, impact as well as evaluation.

Presuming factors provide the basis for support projects and disclose essential requirements for a young carers’ project to start. Before considering material issues, the aspect of raising awareness for the subject matter of young carers should be brought into focus

  • within wider society
  • within professional groups and organisations, potentially in contact with young carers
  • and among the group of people concerned

as well as the aspect of accessibility or identification of young carers within their immediate living environments.

All possible levels need to be considered in order to raise awareness effectively. Appropriate media coverage, for instance, helps to create public awareness for the situation of young carers. Regular training courses and ready-made information kits can provide a guideline for professional groups in contact with young carers (e.g. education, medicine, nursing and social work). Further, they assist in drawing attention to young carers who have received only little attention so far in Austria. However, young carers themselves contribute to raising attention by functioning as role models, especially on the level of children and adolescents concerned. On this basis a professional network is required in order to reach, identify and design the accessibility to a support project for young carers and their families.

A second aspect is connected to existing resources for a specific young carers’ project. This includes those aspects which are necessary as input for a successful implementation and maintenance of a project. The following points are understood as such in the context of young carers’ projects:

  • Material resources – primarily financial funding to initiate and maintain support programmes
  • In Austria, subsidies for financing young carers’ projects are possible by means of the Care Fund which may also provide financial resources for innovative projects1
  • Human resources – full-time vs volunteer work, number of employees and their professional skills
  • Organizational resources, including the question of potential linkage and cooperation with other institutions
  • Social resources in terms of awareness and the willingness to help within society

Interventions form the fundamental ideas of activities within young carers’ projects. Further, in the framework for the model they are depicted as immediate activities in terms of practical relevance and implementation.

In this context, the individual family background of each child and adolescent needs to be considered for evaluation. Focusing on young carers, support programmes aim at

  • evaluating the need for support
  • enabling being “just a kid”
  • stimulating exchange between like-minded peers
  • offering adequate information and counselling
  • disclosing potential resources
  • as well as at physical relief.

The core issue in the context of appropriate planning of immediate activities consists in assessing the particular need for support of young carers. This specifically refers to the direct implementation of a suitable assessment instrument. Established tools for example on the one hand include “Multidimensional Assessment of Caring Activities” (MACA-YC20) which is used to identify specific needs and the particular degree of involvement in family care. On the other hand, the supplementary questionnaire “Positive and Negative Outcomes of Caring” (PANOC-YC20) is utilised in order to determine consequences on performed caring activities (Joseph/Becker/ Becker 2009).

Various leisure activities such as clubs, camps or spending time together, are core elements of most young carers’ projects, and aim towards young carers having time for themselves and being able to be “just a kid”. Furthermore, within the context of conversation rounds among peer groups, they give young carers the opportunity to exchange views with children and adolescents in similar situations.

Adequate information and counselling possibilities have to be offered in order to meet the need for information. In particular, this includes websites, information material and sessions, counselling hours, family group conference, service hotlines and telephone group-consultancy which support young carers in achieving their objectives across organisations and group-specifically.

In order to reduce children’s and adolescents’ caring activities, steps have to be taken so as to disclose environmental and social resources. Support opportunities within the private as well as the professional sector can be revealed by means of a family group conference, or counselling and information service. Further, they can assist young carers in nursing activities, depending on the desired degree of involvement.

Activities which unburden young carers with regards to physically demanding caring activities are also of importance. Direct instructions within the domestic sphere but also external counselling units such as videos can convey physiologically appropriate ways of working to young carers and may initiate physical relief.

In addition to programmes specific to young carers, interventions focussing on the entire family structure are needed which

  • assess family need for support
  • support family coordination to organize the situation
  • inform and advise
  • as well as enable an exchange with like-minded peers.

By assessing the family need for support, a basis is created on which interventions and activities appropriate to those being addressed can be planned and evaluated. For assessing and presenting the family situation, the “Family Common Assessment Framework” (fCAF) (Birmingham City Council 2013), along with informal conversations between family and professional supporters, are appropriate tools of evaluation which have already been used in other countries. Another pillar of family involvement includes assistance in coordinating the organisation of the family situation. Hereby, immediate activities such as family group conference, a case management; the concept of family health nurse as well as conveying further offers, aim at individual customization of formal and informal support. In this context, assistance concerned with coordination, in terms of participation, is always targeted at family empowerment.

The concept of case and care management can be a point of contact for families of young carers in Austria. Hereby provided assistance with respect to organizing caring arrangements, in terms of long-term care, its financing and coordination can present great relief for the families.

In order to meet the need for information of all family members involved, open information and counselling services serve as effective tools to provide knowledge to those addressed and to assist them in handling their situation. Moreover, parents’ cafés, for instance, present an opportunity for exchange with like-minded peers for all family members.

Expected results are directly connected with continuous evaluation: On the one hand in view of performed activities and desired immediate outcomes, on the other hand with regard to sustainability of implemented young carers’ projects.

The issue outcome encompasses all expected results of set activities which can also be used as evaluation criteria. By achieving the primary objective, that is, relieving young carers of a caring role, inappropriate with regards to age and development, over a longer term, positive results are noticeable in terms of tackling developmental tasks set by society especially in the area of schooling or training – Impact.

Coupled with this, by supporting young carers, inter alia, economic benefits can be determined. According to studies from Great Britain, every pound invested in young carers’ projects flows back 6.7 times if negative outcomes of involvement of young carers in long-time care can be avoided. Another study shows that, given the attainment of personal training objectives and interests without taking over nursing care, savings amount to 56.000 pounds per young carer (Crossroads Caring for Carers/The Princess Royal Trust for Carers 2008).

Conclusion and recommendations

Further development of the target criterion: Prevention

The majority of reviewed projects aim towards preventing negative effects on children and adolescents caused by caring activities. Precautionary activities, in the sense of preventing caring activities performed by children, are rarely taken up in existing projects. Experiences on an international scale show that prevention, as regarded in the project objective, i.e., in terms of avoiding caring performed by children (primary prevention), by means of approaching support programmes, such as family counselling, takes place. This assumes the existence of appropriate local outpatient services, an arrangement of case and care management as well as professional groups who can deal with problems of families within their immediate vicinity – family health nursing or social work.

Awareness-raising as topic for years to come

Since two years a strong increase in awareness of the existence of the phenomenon of “young carers” can be observed. Nevertheless, as already mentioned before in the recommendations of the first study on young carers, organized awareness campaigns to constantly accompany the subject of young carers, will be the imperative of years to come. In doing so, wider society and particularly those groups involved with young carers for professional reasons, as well as the party concerned itself shall be reached.

Close to Home implementation of projects and financing

In near future, it will be a great challenge to establish support projects in the immediate vicinity and to use networks across professions and organizations in order to reach and support young carers. Close to home programmes in small-scale structures such as municipalities, districts and residential areas facilitate networking and coordination of professional groups relevant to young carers or organizations such as schools, outpatient nursing service, and social work of local doctors as well as children and youth organizations. In order to set up and establish programmes, financial aid is possible by means of the Care Fund of the Ministry of Social Affairs which also supports innovative projects and quality assurance measures in the area of long-time care at municipality and Federal State level.

Right to identification of young carers and assessment of needs

A right step into this direction can be the entitlement to assessing the situation and need of young carers. This can take place by implementing some kind of obligation to register contact with young carers or their chronically ill family members in GP practices, hospitals or schools. This requires special care and attention in daily practice, for instance by always asking about children in the household and their well-being in the context of consultations of chronically ill family members in GP practices or during discharge from hospital.

Expanding the target group with special focus on young adult carers

This umbrella topic encompasses different groups which have not been referred to explicitly here. These include, for instance, children of addicts or of parents with traumatic flight experiences. Special emphasis has to be given to the group of young adult carers, that is, those who have to manage caring for another person in addition to the challenge of growing-up and associated tasks such as training, career or family planning. In this context, persons affected have to be assisted in developmentally dependant transitional processes so that, e.g. caring adolescents may achieve set professional goals despite their caring responsibilities at home. Here too, awareness of those groups presently is to be developed in Austria, particularly in economy and in the education and training sector.

Focus on intervention research

Regardless of the number of projects for young carers on an international scale, only very few publications focus on how and to which extent included activities improve the situation of the people concerned. Consequently, there is a lack of outlined evaluation results and information on the fact which activities yielded which results in particular.

1 See http://www.sozialministerium.at/site/Soziales/Pflege_und_Betreuung/Pflegefonds/