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Maintaining everyday life in a family with a dying parent: Teenagers' experiences of adapting to responsibility

Published online by Cambridge University Press:  24 March 2015

Ulrica Melcher ,
Rolf Sandell  and
Anette Henriksson
Ulrica Melcher
Affiliation:
Palliative Research Centre, Ersta Sköndal University Collage and Ersta Hospital, Stockholm, Sweden Ersta Hospice Clinic, Stockholm, Sweden
Rolf Sandell
Affiliation:
Department of Psychology, Lund University, Lund, Sweden
Anette Henriksson*
Affiliation:
Palliative Research Centre, Ersta Sköndal University Collage and Ersta Hospital, Stockholm, Sweden Department of Health Care Sciences, Ersta Sköndal University College, Stockholm, Sweden Capio Geriatrics, Palliative Care Unit, Dalens Hospital, Stockholm, Sweden
*
Address correspondence and reprint requests to: Anette Henriksson, Palliative Research Centre, Ersta Sköndal University Collage and Ersta Hospital, Stockholm, Sweden. E-Mail: anette.henriksson@esh.se
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Abstract

Objective:

Teenagers are living through a turbulent period in their development, when they are breaking away from the family to form their own identities, and so they are particularly vulnerable to the stressful situation of having a parent affected by a progessive and incurable illness. The current study sought to gain more knowledge about the ways that teenagers themselves describe living in a family with a seriously ill and dying parent. More specifically, the aims were to describe how teenagers are emotionally affected by everyday life in a family with a dying parent and to determine how they attempt to adapt to this situation.

Method:

The study employed a descriptive and interpretive design using qualitative content analysis. A total of 10 teenagers (aged 14–19 years, 7 boys and 3 girls) participated through repeated, individual, informal interviews that were carried out as free-ranging conversations.

Results:

While contending with their own vulnerable developmental period of life, the teenagers were greatly affected by their parent's illness and took on great responsibility for supporting their parents and siblings, and for maintaining family life. Lacking sufficient information and support left them rather unprepared, having to guess and to interpret the vague signs of failing health on their own, with feelings of uncertainty and loneliness as a consequence.

Significance of Results:

Support from healthcare professionals should be designed to help and encourage parents to have open communications about their illness with their teenaged children. Our results add further support to the literature, reinforcing the need for an approach that uses a systemic perspective and considers the family to be the appropriate unit of care and offers a suitable support system.

Keywords

TeenagersDyingParentPalliative careQualitative
Type
Original Articles
Information
Palliative & Supportive Care , Volume 13 , Issue 6 , December 2015 , pp. 1595 - 1601
Copyright
Copyright © Cambridge University Press 2015 

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References

REFERENCES

Barnes, J., Kroll, L., Burke, O., et al. (2000). Qualitative interview study of communication between parents and children about maternal breast cancer. BMJ, 321, 479–482.Google Scholar
Barnes, J., Kroll, L., Lee, J., et al. (2002). Factors predicting communication about the diagnosis of maternal breast cancer to children. Journal of Psychosomatic Research, 52, 209–214.CrossRefGoogle ScholarPubMed
Blos, P. (1979). Modifications in the classical psychoanalytical model of adolescence. Adolescent Psychiatry, 7, 6–25.Google Scholar
Buchwald, D., Delmar, C. & Schantz-Laursen, B. (2012). How children handle life when their mother or father is seriously ill and dying. Scandinavian Journal of Caring Sciences, 26, 228–235.Google Scholar
Bugge, K.E., Helseth, S. & Darbyshire, P. (2008). Children's experiences of participation in a family support program when their parent has incurable cancer. Cancer Nursing, 31, 426–434.Google Scholar
Bylund Grenklo, T., Kreicbergs, U., Hauksdottir, A., et al. (2013). Self-injury in teenagers who lost a parent to cancer: A nationwide, population-based, long-term follow-up. JAMA Pediatrics, 167, 133–140.Google Scholar
Compas, B.E., Worsham, N.L., Epping-Jordan, J.E., et al. (1994). When mom or dad has cancer: Markers of psychological distress in cancer patients, spouses, and children. Health Psychology, 13, 507–515.Google Scholar
Dehlin, L. & Reg, L.M. (2009). Adolescents' experiences of a parent's serious illness and death. Palliative & Supportive Care, 7, 13–25.Google Scholar
Finch, A. & Gibson, F. (2009). How do young people find out about their parent's cancer diagnosis: A phenomenological study. European Journal of Oncology Nursing, 13, 213–222.CrossRefGoogle Scholar
Forrest, G., Plumb, C., Ziebland, S., et al. (2006). Breast cancer in the family: Children's perceptions of their mother's cancer and its initial treatment: Qualitative study. BMJ, 332, 998–1003.Google Scholar
Graneheim, U.H. & Lundman, B. (2004). Qualitative content analysis in nursing research: Concepts, procedures and measures to achieve trustworthiness. Nurse Education Today, 24, 105–112.Google Scholar
Helseth, S. & Ulfsaet, N. (2003). Having a parent with cancer: Coping and quality of life of children during serious illness in the family. Cancer Nursing, 26, 355–362.CrossRefGoogle ScholarPubMed
Kennedy, V.L. & Lloyd-Williams, M. (2009). How children cope when a parent has advanced cancer. Psycho-Oncology, 18, 886–892.CrossRefGoogle Scholar
Lewis, F.M. & Darby, E.L. (2003). Adolescent adjustment and maternal breast cancer: A test of the faucet hypothesis. Journal of Psychosocial Oncology, 21, 81–104.Google Scholar
Maynard, A., Patterson, P., Mcdonald, F.E., et al. (2013). What is helpful to adolescents who have a parent diagnosed with cancer? Journal of Psychosocial Oncology, 31, 675–697.CrossRefGoogle ScholarPubMed
Nelson, E. & While, D. (2002). Children's adjustment during the first year of a parent's cancer diagnosis. Journal of Psychosocial Oncology, 20(1), 15–36.Google Scholar
Patterson, P. & Rangganadhan, A. (2010). Losing a parent to cancer: A preliminary investigation into the needs of adolescents and young adults. Palliative & Supportive Care, 8, 255–265.Google Scholar
Patterson, P., Pearce, A. & Slawitschka, E. (2011). The initial development of an instrument to assess the psychosocial needs and unmet needs of young people who have a parent with cancer: Piloting the offspring cancer needs instrument (OCNI). Supportive Care in Cancer, 19, 1165–1174.Google Scholar
Rainville, F., Dumont, S., Simard, S., et al. (2012). Psychological distress among adolescents living with a parent with advanced cancer. Journal of Psychosocial Oncology, 30, 519–534.CrossRefGoogle ScholarPubMed
Ranmal, R., Prictor, M. & Scott, J.T. (2008). Interventions for improving communication with children and adolescents about their cancer. The Cochrane Database of Systematic Reviews, 8(4), CD002969. doi: 10.1002/14651858.CD002969.pub2.Google Scholar
Siegel, K., Mesagno, F.P., Karus, D., et al. (1992). Psychosocial adjustment of children with a terminally ill parent. Journal of the American Academy of Child and Adolescent Psychiatry, 31, 327–333.Google Scholar
Siegel, K., Karus, D. & Raveis, V.H. (1996). Adjustment of children facing the death of a parent due to cancer. Journal of the American Academy of Child and Adolescent Psychiatry, 35, 442–450.Google Scholar
Singer, B.A. (1983). Psychological trauma, defense strategies and treatment considerations in cancer patients and their families. The American Journal of Family Therapy, 11(3), 15–21.CrossRefGoogle Scholar
Singer, B.A. (1984). The psychological impact of cancer on patient and family. The Journal of the Medical Society of New Jersey, 81, 383–385.Google Scholar
Sparks, M.J. (1997). Helping a child when a parent has cancer: Teach the family how to prepare for the road ahead. Nursing, 27(10), 16–17.Google Scholar
Spira, M. & Kenemore, E. (2000). Adolescent daughters of mothers with breast cancer. Clinical Social Work Journal, 28(2), 183–195.Google Scholar
Stiffler, D., Barada, B., Hosei, B., et al. (2008). When mom has breast cancer: Adolescent daughters' experiences of being parented. Oncology Nursing Forum, 35, 933–940.Google Scholar
Su, Y.H. & Ryan-Wenger, N.A. (2007). Children's adjustment to parental cancer: A theoretical model development. Cancer Nursing, 30, 362–481, quiz 382–383.Google Scholar
Walsh-Burke, K. (1992). Family communication and coping with cancer: Impact of We Can weekend. Journal of Psychosocial Oncology, 10(1), 63–81.Google Scholar
WHO (2002). National cancer control programmes: Policies and managerial guidelines, 2nd ed. Milan: World Health Organization. Available at http://www.who.int/cancer/media/en/408.pdf.Google Scholar
Visser, A., Huizinga, G.A., van Der Graaf, W.T., et al. (2004). The impact of parental cancer on children and the family: A review of the literature. Cancer Treatment Reviews, 30, 683–694.Google Scholar
Wright, L.M. & Bell, J.M. (2009). Beliefs and illness: A model for healing. Calgary: 4th Floor Press.Google Scholar
Wright, L.M. & Leahey, M. (2009). Nurses and families: A guide to family assessment and intervention. Philadelphia, F.A. Davies.Google Scholar