Skip to main content

Well-being and Need for Support of Adolescents with a Chronically Ill Family Member

Journal of Child and Family Studies volume 26, pages 405–415 (2017)Cite this article

Abstract

This study investigates whether there are differences in the well-being, need for help and use of support services between adolescents with and without a chronically ill or disabled family member. It also examines the role played by the type of illness, the relationship to the family member and the nature and intensity of the help provided by the adolescent. A Dutch sample of 1581 adolescents (average age 14.6 years) completed a questionnaire in 2010 about mental health problems, pro-social behavior, need for and use of support and the illness of family members and any care tasks performed by the respondent. Young people with a sick family member had more mental health problems than their counterparts without a chronically ill family member. They also reported a greater need for and use of help and support. Performing domestic tasks was found to be a predictor for overall mental health problems. The intensity of the help given was related to the need for help by the adolescent. It is concluded that growing up with a chronically ill family member and spending a lot time performing (domestic) tasks are risk factors for adolescent mental health problems and adolescents’ need for help. Special attention is warranted for those who need support but who do not translate that need into reality by seeking help.

This is a preview of subscription content, access via your institution.

Access options

Buy single article

Instant access to the full article PDF.

USD 39.95

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

References

  • Aldridge, J., & Becker, S. (1994). My child, my carer: The parents’ perspective. Loughborough: Loughborough University. Young carers research group

    Google Scholar 

  • Barkmann, C., Romer, G., Watson, M., & Schulte-Markwort, M. (2007). Parental physical illness as a risk for psychosocial maladjustment in children and adolescents: Epidemiological findings from a national survey in Germany. Psychosomatics, 48(6), 476–481.

    Article  PubMed  Google Scholar 

  • Becker, S. (1995). Young carers in Europe; an exploratory cross-national study in Britain, France, Sweden and Germany. Loughborough: Loughborough University. Young carers research group

    Google Scholar 

  • Becker, S. (2007). Global perspectives on children’s unpaid caregiving in the family. Research and policy on ‘Young Carers’ in the UK, Australia, the USA and Sub-Saharan Africa. Global Social Policy, 7, 23–50.

    Article  Google Scholar 

  • Bilsborough, S. (2004). What we want from adult psychiatrists and their colleagues: “Telling it like it is”. In M. Goepfert, J. Webster, M. V. Seeman (Eds.), Parental Psychiatric Disorder: Distressed Parents and their Families (pp. 3–7). Cambridge, UK: Cambridge University Press.

    Chapter  Google Scholar 

  • Champion, J. E., Jaser, S. S., Reeslund, K. L., Simmons, L., Potts, E., Shears, A. R., & Compas, B. E. (2009). Caretaking behaviours by adolescent children of mothers with and without a history of depression. Journal of Family Psychology, 23, 156–166.

    Article  PubMed  PubMed Central  Google Scholar 

  • Dearden, C., & Becker, S. (2000). Growing up caring: Vulnerability and transition to adulthood—Young carers’ experiences. Leicester: Youth Work Press.

    Google Scholar 

  • De Boer, A., Oudijk, D., & Tielen, L. (2012). Kinderen en jongeren met een langdurig ziek gezinslid in Nederland [Children and adolescents with a chronically ill family member in the Netherlands]. TSG – Tijdschrift voor gezondheidswetenschappen, 90(3), 167–170.

    Article  Google Scholar 

  • De Veer, A. J. E., & Francke, A. L. (2008). Opgroeien met zorg. Quick scan naar de aard en omvang van de zorg, belasting en ondersteuningsmogelijkheden voor jonge mantelzorgers [Growing up with care. Quick scan into the nature and extent of informal care, burden, and opportunities for support for young carers]. Utrecht: Nivel.

  • Di Biasi, S., Trimarco, B., D’Ardia, C., Melogno, S., Meledrandri, G., & Levi, G. (2016). Psychological adjustment, social responsiveness and parent distress in an Italian Sample of siblings of children with high-functioning autism spectrum disorder. Journal of Child and Family Studies, 25(3), 883–890.

    Article  Google Scholar 

  • Diener, E., & Suh, E. (1997). Measuring quality of life: Economic, social, and subjective indicators. Social Indicators Research, 40, 189–216.

    Article  Google Scholar 

  • Drost, L. M., Cuijpers, P., & Schippers, G. M. (2010). Developing an interactive website for adolescents with a mentally ill family member. Clinical Child Psychology and Psychiatry, 16(3), 351–364.

    Article  PubMed  Google Scholar 

  • Drost, L. M., & Schippers, G. M. (2015). Online support for children of parents suffering from mental illness: A case study. Clinical Child Psychology and Psychiatry, 20(1), 53–67.

    Article  PubMed  Google Scholar 

  • Drost, L. M., Van der Krieke, L., Sytema, S., & Schippers, G. M. (2016). Self-expressed strengths and resources of children of parents with a mental illness: A systematic review. International Journal of Mental Health Nursing, 25, 102–115.

    Article  PubMed  Google Scholar 

  • East, P. L. (2010). Children’s provision of family caregiving: Benefit or burden? Child Development Perspectives, 4, 55–61.

    Article  Google Scholar 

  • Ebstyne King, P., & Furrow, J. L. (2004). Religion as a resource for positive youth development: Religion, social capital, and moral outcomes. Developmental Psychology, 49, 703–713.

    Article  Google Scholar 

  • Goodman, R. (2001). Psychometric properties of the Strength and Difficulties Questionnaire. Journal of American Child and Adolescence Psychiatry, 40, 1337–1345.

    Article  Google Scholar 

  • Hay, D. F., & Pawlby, S. (2003). Prosocial development in relation to children’s and mothers’ psychological problems. Child Development, 74, 1314–1327.

    Article  PubMed  Google Scholar 

  • Huizinga, G. A., Visser, A., Van der Graaf, W. T. A., Hoekstra, H. J., Stewart, R. E., & Hoekstra-Weebers, J. E. H. M. (2011). Family-oriented multilevel study on the psychological functioning of adolescent children having a mother with cancer. Psycho-Oncology, 20, 730–737.

    Article  PubMed  Google Scholar 

  • Knol, F. A. (1998). Van hoog naar laag, van laag naar hoog. De sociaal-ruimtelijke ontwikkeling van wijken tussen 1971 en 1995 [From high to low, from low to high. The social-spatial development of neighborhoods between 1971 and 1995]. Rijswijk: Sociaal en Cultureel Planbureau.

    Google Scholar 

  • Korneluk, Y. G., & Lee, C. M. (1998). Children’s adjustment to parental physical illness. Clinical Child and Family Psychology Review, 1, 179–193.

    Article  PubMed  Google Scholar 

  • Lackey, N. R., & Gates, M. F. (2001). Adults’ recollections of their experiences as young caregivers of family members with chronic physical illnesses. Journal of Advanced Nursing, 34, 320–328.

    Article  PubMed  Google Scholar 

  • McMahon, T. J., & Luthar, S. S. (2007). Defining characteristics and potential consequences of caretaking burden among children living in urban poverty. American Journal of Orthopsychiatry, 2, 267–281.

    Article  Google Scholar 

  • Meijer, A. M., Oostveen, S. J. E., & Stams, G. J. J. M. (2008). Zorgen voor een zieke ouder. De relatie tussen mantelzorg, ziekte van de ouder en gedragsproblemen bij kinderen [Care for a sick parent. The relationship between informal care, illness of the parent, and behavioral problems in children]. Kind en Adolescent, 29, 208–220.

    Article  Google Scholar 

  • Muris, P., Meesters, C., & Van den Berg, F. (2003). The strengths and difficulties questionnaire (SDQ): Further evidence for its reliability and validity in a community sample of Dutch children and adolescents. European Child and Adolescent Psychiatry, 12, 1–8.

    Article  PubMed  Google Scholar 

  • Ormel, J., Neeleman, J., & Wiersma, D. (2001). Determinanten van psychische ongezondheid: Implicaties voor onderzoek en beleid [Determinants of mental health problems: Implications for research and policy]. Tijdschrift voor Psychiatrie, 43, 245–257.

    Google Scholar 

  • Pakenham, K. I., Bursnall, S., Chiu, J., Cannon, T., & Okochi, M. (2006). The psychosocial impact of caregiving on young people who have a parent with an illness or disability: Comparisons between caregivers and noncaregivers. Rehabilitation Psychology, 51, 113–126.

    Article  Google Scholar 

  • Pakenham, K., & Cox, S. (2014). The effect of parental illness and other ill family members on the adjustment of children. Annals of Behavioral Medicine, 48, 424–437.

    Article  PubMed  Google Scholar 

  • Roberts, C., Freeman, J., Samdal, O., Schnor, C. W., De Looze, M. E., Nic Gabhainn, S., & Rasmussen, M. (2009). The health behaviour in school-aged children (HBSC) study: Methodological developments and current tensions. International Journal of Public Health, 54, 140–150.

    Article  PubMed  PubMed Central  Google Scholar 

  • Rossiter, L., & Sharpe, D. (2001). The siblings of individuals with mental retardation: A quantitative integration of the literature. Journal of Child and Family Studies, 10, 65–84.

    Article  Google Scholar 

  • Sharpe, D., & Rossiter, L. (2002). Siblings of children with a chronic illness: A meta-analysis. Journal of Pediatric Psychology, 27, 699–710.

    Article  PubMed  Google Scholar 

  • Shifren, K., & Kachorek, L. V. (2003). Does early caregiving matter? The effects on young caregivers’ adult mental health. International Journal of Behavioral Development, 27, 338–345.

    Article  Google Scholar 

  • Sieh, D. S., Meijer, A. M., Oort, F. J., Visser-Meily, J. M. A., & Van der Leij, D. A. V. (2010). Problem behavior in children of chronically ill parents: A meta-analysis. Clinical Child and Family Psychology Review, 13, 384–397.

    Article  PubMed  PubMed Central  Google Scholar 

  • Sieh, D. S., Visser-Meily, J. M. A., & Meijer, A. M. (2011). Jongeren met chronisch zieke ouders: Jonge mantelzorger heeft behoefte aan aandacht [Adolescents with chronically ill parents: Young carer needs attention]. Jeugd en Co Kennis, 5, 18–26.

    Article  Google Scholar 

  • Sieh, D. S., Visser-Meily, J. M. A., & Meijer, A. M. (2013). Differential outcomes of adolescents with chronically ill and healthy parents. Journal of Child and Family Studies, 22, 209–218.

    Article  PubMed  Google Scholar 

  • Siskowski, C. (2009). Adolescent caregivers. In K. Shifren (Ed.), How caregiving affects development: Psychological implications for child, adolescent, and adult caregivers (pp. 65–91). Washington, DC: American Psychological Association.

    Chapter  Google Scholar 

  • Stevens, J., Pommer, E., Van Kempen, H., Zeijl, E., Woittiez, I., Sadiraj, K., Gilsing, R., & Keuzenkamp, S. (2009). De jeugd een zorg. Ramings- en verdeelmodel jeugdzorg 2007. [Concern for youth. An estimate and distribution model of youth welfare work]. Den Haag: Sociaal en Cultureel Planbureau.

    Google Scholar 

  • Thomas, N., Stainton, T., Jackson, S., Cheung, W. Y., Doubtfire, S., & Webb, A. (2003). ‘Your friends don’t understand’: Invisibility and unmet needs in the lives of ‘young carers’. Child and Family Social Work, 8, 35–46.

    Article  Google Scholar 

  • Thomson, E., & McLanahan, S. S. (2012). Reflections on “Family structure and child well-being: Economic resources vs parental socialization”. Social Forces, 91, 45–53.

    Article  Google Scholar 

  • Van den Einde-Bus, A. E. M., Goldschmeding, J. E. J., Tielen, L. M., De Waart, F. G., & Van de Looij-Jansen, P. M. (2010). Jongeren die opgroeien met een langdurig ziek, gehandicapt of verslaafd familielid: Reden tot zorg [Adolescents who grow up with a chronically ill, disabled or addicted family member: Subject of concern]. TSG – Tijdschrift voor gezondheidswetenschappen, 88, 79–88.

    Article  Google Scholar 

  • Van Dorsselaer, S., Vermeulen, E., De Looze, M., De Roos, S., Verdurmen, J., Ter Bogt, T., Vollebergh, W. (Eds.) (2010). HBSC 2009: Gezondheid, welzijn en opvoeding van jongeren in Nederland [HBSC 2009. Health, well-being, and child rearing of adolescents in the Netherlands]. Utrecht: Trimbos-instituut.

    Google Scholar 

  • Van Widenfelt, B. M., Goedhart, A. W., Treffers, P. D. A., & Goodman, R. (2003). Dutch version of the strengths and difficulties questionnaire (SDQ). European Child and Adolescent Psychiatry, 12, 281–289.

    Article  PubMed  Google Scholar 

  • Visser-Meily, J. M. A., Post, M. W., & Meijer, A. M. (2006). Mantelzorg bij CVA-patiënten, de gevolgen van een beroerte voor partners en kinderen [Informal caregiving with CVA-patients, the effects of a stroke for partners and children]. Bijblijven, 22, 37–42.

    Article  Google Scholar 

  • Vollebergh, W., Van Dorsselaer, S., Monshouwer, K., Verdurmen, J., Van der Ende, J., & Ter Bogt, T. (2006). Mental health problems in early adolescents in the Netherlands: Differences between school and household surveys. Social Psychiatry and Psychiatric Epidemiology, 41, 156–163.

    Article  PubMed  Google Scholar 

  • Warren, J. (2007). Young carers: Conventional or exaggerated levels of involvement in domestic and caring tasks. Children and Society, 21, 136–146.

    Google Scholar 

Download references

Author information

Authors and Affiliations

  1. The Netherlands Institute for Social Research (SCP), Research sector Care, Emancipation and Time Use, Postbus 16164, The Hague, 2500, The Netherlands

    Simone A. De Roos & Alice H. De Boer

  2. Social Affairs and Employment (SZW) Inspectorate, The Hague, The Netherlands

    Sander M. Bot

Authors
  1. Simone A. De Roos
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Alice H. De Boer
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Sander M. Bot
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Simone A. De Roos.

Ethics declarations

Conflict of Interest

The authors declare that they have no competing interests.

Ethical Approval

All procedures performed involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed Consent

Informed consent was obtained from all individual participants in the study.

Rights and permissions

Reprints and Permissions

About this article

Verify currency and authenticity via CrossMark

Cite this article

De Roos, S.A., De Boer, A.H. & Bot, S.M. Well-being and Need for Support of Adolescents with a Chronically Ill Family Member. J Child Fam Stud 26, 405–415 (2017). https://doi.org/10.1007/s10826-016-0574-7

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10826-016-0574-7

Keywords

  • Well-being
  • Need for help
  • Adolescents with a chronically ill family member
  • Care tasks