Hostname: page-component-76fb5796d-qxdb6 Total loading time: 0 Render date: 2024-04-28T00:04:47.837Z Has data issue: false hasContentIssue false
  • English
  • Français

How to support teenagers who are losing a parent to cancer: Bereaved young adults' advice to healthcare professionals—A nationwide survey

Published online by Cambridge University Press:  03 October 2016

Anette Alvariza ,
Malin Lövgren ,
Tove Bylund-Grenklo ,
Pia Hakola ,
Carl Johan Fürst  and
Ulrika Kreicbergs
Anette Alvariza*
Affiliation:
Department of Healthcare Sciences, Palliative Research Centre, Ersta Sköndal University College, Stockholm, Sweden Capio Palliative Care, Dalen Hospital, Stockholm, Sweden Department of Neurobiology, Care Sciences, and Society, Division of Nursing, Karolinska Institutet, Huddinge, Sweden
Malin Lövgren
Affiliation:
Department of Healthcare Sciences, Palliative Research Centre, Ersta Sköndal University College, Stockholm, Sweden Department of Women's and Children's Health, Karolinska Institutet, Stockholm, Sweden
Tove Bylund-Grenklo
Affiliation:
Department of Women's and Children's Health, Karolinska Institutet, Stockholm, Sweden Department of Health and Caring Sciences, Linnaeus University, Växjö, Sweden
Pia Hakola
Affiliation:
Stockholms Sjukhem Foundation, Stockholm, Sweden
Carl Johan Fürst
Affiliation:
Department of Clinical Sciences–Oncology, The Institute for Palliative Care, Lund University and Region Skåne, Lund, Sweden
Ulrika Kreicbergs
Affiliation:
Department of Healthcare Sciences, Palliative Research Centre, Ersta Sköndal University College, Stockholm, Sweden Department of Women's and Children's Health, Karolinska Institutet, Stockholm, Sweden
*
Address correspondence and reprint requests to Anette Alvariza (formerly Henriksson), Palliative Research Centre, Ersta Sköndal University College, Box 11189, SE-10061 Stockholm, Sweden. E-Mail: anette.alvariza@esh.se.
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective:

The loss of a parent to cancer is considered one of the most traumatic events a teenager can experience. Studies have shown that teenagers, from the time of diagnosis, are already extremely worried about the consequences of a parent's cancer but tend to be left to manage these concerns on their own. The present study aimed to explore young adults' advice to healthcare professionals on how to support teenagers who are losing a parent to cancer.

Methods:

This work derives from a Swedish nationwide survey and employs a qualitative approach with a descriptive/interpretive design to obtain answers to an open-ended question concerning advice to healthcare professionals. Of the 851 eligible young adults who had lost a parent to cancer when they were 13–16 years of age within the previous 6 to 9 years, 622 participated in our survey (response rate = 73%). Of these 622 young adults, 481 responded to the open-ended question about what advice to give healthcare professionals.

Results:

Four themes emerged: (1) to be seen and acknowledged; (2) to understand and prepare for illness, treatment, and the impending death; (3) to spend time with the ill parent, and (4) to receive support tailored to the individual teenager's needs.

Significance of Results:

This nationwide study contributes hands-on suggestions to healthcare staff regarding attitudes, communication, and support from the perspective of young adults who, in their teenage years, lost a parent to cancer. Teenagers may feel better supported during a parent's illness if healthcare professionals take this manageable advice forward into practice and see each teenager as individuals; explain the disease, its treatments, and consequences; encourage teenagers to spend time with their ill parent; and recommend sources of support.

Keywords

TeenagersCancerSupportDyingHealthcare professionals
Type
Original Articles
Information
Palliative & Supportive Care , Volume 15 , Issue 3 , June 2017 , pp. 313 - 319
Copyright
Copyright © Cambridge University Press 2016 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

REFERENCES

Asbury, N., Lalayiannis, L. & Walshe, A. (2014). How do I tell the children? Women's experiences of sharing information about breast cancer diagnosis and treatment. European Journal of Oncology Nursing, 18, 564–570. Epub ahead of print Aug 30.CrossRefGoogle ScholarPubMed
Azarbarzin, M., Malekian, A. & Taleghani, F. (2016). Adolescents' experiences when living with a parent with cancer: A qualitative study. Iranian Red Crescent Medical Journal, 18(1), e26410. Available from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4753004/.Google Scholar
Bartfai Jansson, K. & Anderzen-Carlsson, A. (2016). Adolescents' perspectives of living with a parent's cancer: A unique and personal experience. Cancer Nursing. Epub ahead of print Feb 26.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(2), 133–140. Available from http://archpedi.jamanetwork.com/article.aspx?articleid=1465757.Google Scholar
Bylund-Grenklo, T., Kreicbergs, U., Uggla, C., et al. (2015). Teenagers want to be told when a parent's death is near: A nationwide study of cancer-bereaved youths' opinions and experiences. Acta Oncologica, 54(6), 944–950. Epub ahead of print Dec 3, 2014.CrossRefGoogle 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(3), 213–222. Available from http://www.sciencedirect.com/science/article/pii/S1462388909000490.Google 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(7548), 998–1003. Epub ahead of print Apr 13. Available from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1450041/.CrossRefGoogle ScholarPubMed
Graneheim, U.H. & Lundman, B. (2004). Qualitative content analysis in nursing research: Concepts, procedures and measures to achieve trustworthiness. Nurse Education Today, 24(2), 105–112.CrossRefGoogle ScholarPubMed
Grenklo, T.B., Kreicbergs, U.C., Valdimarsdottir, U.A., et al. (2013). Communication and trust in the care provided to a dying parent: A nationwide study of cancer-bereaved youths. Journal of Clinical Oncology, 31(23), 2886–2894. Epub ahead of print Jul 15. Available from http://jco.ascopubs.org/content/31/23/2886.full.pdf+html.Google Scholar
Houldin, A. & Lewis, F.M. (2006). Salvaging their normal lives: A qualitative study of patients with recently diagnosed advanced colorectal cancer. Oncology Nursing Forum, 33(4), 719–725.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(6), 675–697.Google Scholar
McDonald, F.E., Patterson, P., White, K.J., et al. (2016). Correlates of unmet needs and psychological distress in adolescent and young adults who have a parent diagnosed with cancer. Psycho-Oncology, 25(4), 447–454. Epub ahead of print Aug 17, 2015.Google Scholar
Melcher, U., Sandell, R. & Henriksson, A. (2015). Maintaining everyday life in a family with a dying parent: Teenagers' experiences of adapting to responsibility. Palliative & Supportive Care, 13(6), 1–7. Epub ahead of print Mar 24.CrossRefGoogle Scholar
Pfeffer, C.R., Karus, D., Siegel, K., et al. (2000). Child survivors of parental death from cancer or suicide: Depressive and behavioral outcomes. Psycho-Oncology, 9(1), 1–10.Google Scholar
Phillips, F. (2014). Adolescents living with a parent with advanced cancer: A review of the literature. Psycho-Oncology, 23(12), 1323–1339. Epub ahead of print Jun 9.CrossRefGoogle Scholar
Phillips, F. (2015). The experience of adolescents who have a parent with advanced cancer: A phenomenological inquiry. Palliative & Supportive Care, 13(4), 1057–1069.Google Scholar
Phillips, F. & Lewis, F.M. (2015). The adolescent's experience when a parent has advanced cancer: A qualitative inquiry. Palliative Medicine, 29(9), 851–858. Epub ahead of print Apr 8.Google Scholar
Sheehan, D.K. & Draucker, C.B. (2011). Interaction patterns between parents with advanced cancer and their adolescent children. Psycho-Oncology, 20(10), 1108–1115. Epub ahead of print Aug 23, 2010.Google Scholar
Sheehan, D.K., Mayo, M.M., Christ, G.H., et al. (2015). Two worlds: Adolescents' strategies for managing life with a parent in hospice. Palliative & Supportive Care, 14(3), 1–10. Epub ahead of print Jul 1.Google ScholarPubMed
Sveen, J., Kreicbergs, U., Melcher, U., et al. (2015). Teenagers' reasoning about a parent's recent death in cancer. Palliative & Supportive Care, 14(4), 1–9. Epub ahead of print Oct 14.Google ScholarPubMed
Turner, J., Clavarino, A., Yates, P., et al. (2007). Development of a resource for parents with advanced cancer: What do parents want? Palliative & Supportive Care, 5(2), 135–145.Google Scholar
Turner, J., Clavarino, A., Yates, P., et al. (2008). Enhancing the supportive care of parents with advanced cancer: Development of a self-directed educational manual. European Journal of Cancer, 44(12), 1625–1631. Epub ahead of print Mar 28.Google Scholar
Warnick, A.L. (2015). Supporting youth grieving the dying or death of a sibling or parent: Considerations for parents, professionals, and communities. Current Opinion in Supportive and Palliative Care, 9(1), 58–63.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(8), 683–694.Google Scholar