Young carers in Germany: to live on as normal as possible - a grounded theory study

Sabine Metzing-Blau, Wilfried Schnepp, Sabine Metzing-Blau, Wilfried Schnepp

Abstract

Background: In contrast to a growing body of research on the situation of adult family care givers, in Germany hardly anything is known about the situation of children and teenagers who are involved in the care of their relatives.

Methods: In this Grounded Theory study 81 semi structured interviews have been carried out with children and their parents in 34 families, in which one member is chronically ill. 41 children and 41 parents participated and the sample is heterogeneous and diverse.

Results: On the one hand, there is the phenomenon 'keeping the family together", which describes how families themselves cope with the chronic illness and also, which tasks to what extent are being shifted and redistributed within the family in order to manage daily life. Influencing factors, the children's motives as well as the impact on the children also belong to this phenomenon. The second phenomenon 'to live a normal course of life' describes concrete wishes and expectations of support for the family to manage the hindered daily life. These two phenomena linked together constitute the 'model of experience and construction of familial care, in which children take over an active role'.

Conclusion: It will be discussed, that the more families are in dire need of support, the more their distress becomes invisible, furthermore, that management of chronic illness is a process, in which the entire family is involved, and thus needs to be considered, and finally, that young carer's relief is not possible without relief of their parents.

Figures

Figure 1
Figure 1
Model of experience and construction of familial care, in which children take over an active role.

References

    1. Dearden C, Becker S. Young Carers – The Facts. Sutton Surrey; Leicester: Reed Business Publishing; YCRG, Loughborough University; 1995.
    1. Dearden C, Becker S. Young Carers in the UK. London: Carers National Association; 1998.
    1. Dearden C, Becker S. Young Carers in the UK The 2004 Report. London: Carers UK; 2004.
    1. Gays M. Getting it right for young carers in the ACT. Family Futures: Issues in Research and Policy 7th Australian Institute of Family Studies Conference; Sydney. 2000.
    1. Office of National Statistics National report for England and Wales. 2003.
    1. Grimshaw R. Children of parents with Parkinson's disease A research report for the Parkinson's Disease Society. Wellington South: The Parkinson's Society of New Zealand Incorporated; 1994.
    1. Frank J. Couldn't care more A study of young carers and their needs. London: The Children's Society; 1995.
    1. Gould A. Young Carers in Sweden. In: Becker S, editor. Young Carers in Europe. Leicestershire: Young Carers Research Group, Loughborough University; 1995. pp. 49–64.
    1. Dietz B, Clasen J. Young Carers in Germany. In: Becker S, editor. Young Carers in Europe. Leicestershire: Young Carers Research Group, Loughborough University; 1995. pp. 65–76.
    1. Gates MF, Lackey NR. Youngsters caring for adults with cancer. Image: Journal of Nursing Scholarship. 1998;30:11–15. doi: 10.1111/j.1547-5069.1998.tb01229.x.
    1. Lackey NR, Gates MF. Adults' recollections of their experiences as young caregivers of family members with chronic physical illness. Journal Of Advanced Nursing. 2001;34:320–328. doi: 10.1046/j.1365-2648.2001.01761.x.
    1. Noble-Carr D. Young Carers Research Project. Final Report: Commonwealth of Australia; 2002.
    1. Aldridge J, Becker S. Children who care – inside the world of young carers. Leicester: Department of Social Sciences, Loughborough University; 1993.
    1. Alexander H. Young carers and HIV. Edinburgh: Children in Scotland; 1995.
    1. Bonney R, Becker S. Missing persons and missing helpers: young carers, the family and the faith community. Leicester: Loughborough University, Young Carers Research Group; 1995.
    1. Dearden C, Becker S. Growing Up Caring Vulnerability and Transitions to Adulthood – Young Carers' Experiences. Leicester: Youth Work Press, National Youth Agency; 2000.
    1. Aldridge J, Becker S. Children caring for parents with mental illness Perspectives of young carers, parents and professionals. Bristol: The Policy Press; 2003.
    1. Heigh TK. The health needs of young carers. London: NCH Children's Charities; 2004.
    1. Banks P. Literature review of identification, needs assessment and service provision for young carers and their families. Edinburgh: Scottish Executive Central Research Unit; 2002.
    1. Noble-Carr D. Young Carers Research Project Background Papers. Canberra: Carers Australia; 2002.
    1. Frank J, Tatum C, Tucker S. On small shoulders Learning from the experiences of former young carers. London: The Children's Society; 1999.
    1. Newton B, Becker S. The Capital Carers An Evaluation of Capital Carers Young Carers Project. Loughborough: Young Carers Research Group, Loughborough University; 1999.
    1. Nigel T, Stainton T, Jackson F, Cheung WY, Doubtfire S, Webb A. "Your friends don't understand": Invisibility and unmet need in the lives of "young carers". Child and Family Social Work. 2003;1:35–46.
    1. Meredith H. Supporting the young carer. Community Outlook. 1992;May:15–18.
    1. Metzing S, Schnepp W. Kinder und Jugendliche als pflegende Angehörige: wer sie sind und was sie leisten. Eine internationale Literaturstudie (1990 – 2006) Pflege Die wissenschaftliche Zeitschrift für Pflegeberufe. 2007;20:323–330.
    1. Metzing S, Schnepp W. Kinder und Jugendliche als pflegende Angehörige: wie sich pflegerische Hilfen auf ihr Leben auswirken können. Eine internationale Literaturstudie (1990 – 2006) Pflege Die wissenschaftliche Zeitschrift für Pflegeberufe. 2007;20:331–336.
    1. Metzing-Blau S, Schnepp W. Warum Kinder und Jugendliche zu pflegenden Angehörigen werden. Einflussfaktoren auf die Konstruktion familialer Pflegearrangements. In: Bauer U, Büscher A, editor. Soziale Pflegeungleichheit Befunde angewandter Pflegeforschung. Wiesbaden: VS Verlag; 2008. pp. 315–341.
    1. Metzing S, Schnepp W, Hübner B, Büscher A. Die Lücke füllen und in Bereitschaft sein – Kinder und Jugendliche als pflegende Angehörige. Pflege & Gesellschaft. 2006;11:351–373.
    1. Metzing S. Kinder und Jugendliche als pflegende Angehörige Erleben und Gestalten familialer Pflege. Bern: Hans Huber Verlag; 2007.
    1. Corbin JM, Strauss AL. Weiterleben lernen Verlauf und Bewältigung chronischer Krankheit, 2 vollständig überarbeitete und erweiterte Ausgabe edn Bern: Huber. 2004.
    1. Grypdonck M. 10 jaar Verplegingswetenschap in Utrecht: nieuwe accenten in de zorg voor chronisch zieken Achtste Mebius Kramer Lezing in Verplegingswetenschap Edited by Universitair medisch centrum Utrecht divisie verplegingswetenschap. Leiden: Spruyt, van Mantgem & de Does BV; 2000. Het leven boven de ziekte uittillen: de verpleegkundige als bondgenoot van de chronisch zieke; pp. 3–31.
    1. Strauss AL, Glaser BG. Chronic Illness and the Quality of Life. Saint Louis: C.V. Mosby Company; 1975.
    1. Schaeffer D, Moers M. Bewältigung chronischer Krankheit – Herausforderungen für die Pflege. In: Rennen-Allhoff B, Schaeffer D, editor. Handbuch Pflegewissenschaft. Weinheim: Juventa; 2000. pp. 447–483.
    1. Wright LM, Leahey M. How to Conclude or Terminate with Families. Journal of Family Nursing. 2004;10:379–401. doi: 10.1177/1074840704267451.
    1. Bründel H, Hurrelmann K. Einführung in die Kindheitsforschung. Weinheim: Beltz; 1996.
    1. Mey G. Zugänge zur kindlichen Perspektive – Methoden der Kindheitsforschung. 2004.
    1. Krüger H-H, Grunert C. Biografische Interviews mit Kindern. In: Behnken I, Zinnecker J, editor. Kinder Kindheit Lebensgeschichte Ein Handbuch. Seelze-Velber; 2001. pp. 129–142.
    1. Irwin LG, Johnson J. Interviewing young children: Explicating our practices and dilemmas. Qualitative Health Research. 2005;15:821–831. doi: 10.1177/1049732304273862.
    1. Hübner B. Kinder und Jugendliche, die in ihren Familien pflegen Eine internationale Literaturstudie. Witten: University of Witten/Herdecke; Bachelor Thesis; 2003.
    1. Department of Health (Eds) Young Carers: Something to think about. London: Department of Health; 1996.
    1. Strauss AL, Corbin JM. Basics of Qualitative Research Techniques and Procedures for Developing Grounded Theory. 2. Thousand Oaks: Sage Publications; 1998.
    1. Steck B. Multiple Sklerose und Familie Psychosoziale Situation und Krankheitsverarbeitung. Basel: Karger; 2002.
    1. Papst J, Dinkel-Sieber S. Kinder in Familien mit chronisch krankem Elternteil am Beispiel der Multiplen Sklerose. Psychotherapie im Dialog (PiD) 2002:68–71. doi: 10.1055/s-2002-25005.
    1. Schone R, Wagenblass S. Wenn Eltern psychisch krank sind Kindliche Lebenswelten und institutionelle Handlungsmuster. Münster: Votum Verlag; 2002.
    1. Romer G, Barkmann C, Schulte-Markwort M, Thomalla G, Riedesser P. Children of somatically ill parents: a methodological review. Clinical Child Psychology and Psychiatry. 2002;7:17–38. doi: 10.1177/1359104502007001003.
    1. Grosze Schlarmann J, Metzing-Blau S, Schnepp W. The use of health-related quality of life (HRQOL) in children and adolescents as an outcome criterion to evaluate family oriented support for young carers in Germany: an integrative review of the literature. BMC Public Health. 2008;8:414. doi: 10.1186/1471-2458-8-414.

Source: PubMed

Sponzoři a spolupracovníci

Zdravotní podmínky

Drogové intervence

3
Předplatit