Hostname: page-component-cd9895bd7-jkksz Total loading time: 0 Render date: 2024-12-24T12:04:04.890Z Has data issue: false hasContentIssue false
  • English
  • Français

Two worlds: Adolescents' strategies for managing life with a parent in hospice

Published online by Cambridge University Press:  01 July 2015

Denice Kopchak Sheehan ,
M. Murray Mayo ,
Grace H. Christ ,
Kim Heim ,
Stephanie Parish ,
Ghada Shahrour  and
Claire Burke Draucker
Denice Kopchak Sheehan*
Affiliation:
Kent State University College of Nursing, Kent, Ohio
M. Murray Mayo
Affiliation:
Ursuline College, The Breen School of Nursing, Pepper Pike, Ohio
Grace H. Christ
Affiliation:
Columbia University School of Social Work, New York, New York
Kim Heim
Affiliation:
Department of Hematology/Oncology, Akron General Medical Center Physicians Partner Group, Akron, Ohio
Stephanie Parish
Affiliation:
Kent State University College of Nursing, Kent, Ohio
Ghada Shahrour
Affiliation:
Kent State University College of Nursing, Kent, Ohio
Claire Burke Draucker
Affiliation:
Indiana University School of Nursing, Indianapolis, Indiana
*
Address correspondence and reprint requests to: Denice Kopchak Sheehan, Kent State University, College of Nursing, Henderson Hall, P.O Box 5190, Kent, Ohio 44242-0001. E-mail: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective:

This study aimed to generate an explanatory model of the coping strategies that adolescents employ to manage the stressors they experience in the final months of their ill parent's life and shortly after their death.

Method:

The sample included 26 families of adolescents with a parent receiving care in a large hospice program in northeastern Ohio. A semistructured interview was conducted with 14 ill parents, 17 well parents/guardians, and 30 of their adolescent children before the parent's death and, additionally, with 6 of these families after the death. The interviews were audiotaped, transcribed verbatim, and analyzed using a grounded-theory approach.

Results:

The participants described two worlds that constituted the lives of the adolescents: the well world of normal adolescence and the ill world of having a parent near the end of life. The adolescents experienced a common challenge of living in two worlds and responded to the challenge with a process we labeled “managing two worlds.” Five stages through which adolescents manage their worlds were identified: keeping the ill world and the well world separate; having the ill world intrude into the well world; moving between the ill world and the well world; being immersed in the ill world; and returning to the well world having been changed by the ill world.

Significance of results:

The explanatory model of “managing two worlds” outlines a complex and nuanced process that changes over time. The model can be used by health professionals who seek to help adolescents navigate this critical time when their parents are dying or have recently died. These results can also be used to inform the development of interventions that assist families with strategies tailored to an adolescent's specific needs. Future research should investigate associations among the process of “managing two worlds” and outcomes related to adolescent bereavement.

Keywords

Adolescents/youthHospiceParental deathAdvanced cancerQualitative research
Type
Original Articles
Information
Palliative & Supportive Care , Volume 14 , Issue 3 , June 2016 , pp. 177 - 186
Copyright
Copyright © Cambridge University Press 2015 

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

Beale, E.A., Sivesind, D. & Bruera, D. (2004). Parents dying of cancer and their children. Palliative & Supportive Care, 2(4), 387–393.Google Scholar
Brent, D., Melhem, N., Donohoe, M.B., et al. (2009). The incidence and course of depression in bereaved youth 21 months after the loss of a parent to suicide, accident, or sudden natural death. The American Journal of Psychiatry, 166(7), 786–794.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(2), 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(6), 426–434.Google Scholar
Bylund Grenklo, T., Kreicbergs, U., Hauksdóttir, 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.Google Scholar
Bylund Grenklo, T., Kreicbergs, U., Valdimarsdóttir, U.A., et al. (2014). Self-injury in youths who lost a parent to cancer: Nationwide study of the impact of family-related and health care–related factors. Psycho-Oncology, 23(9), 989–997 Google Scholar
Cait, C.A. (2005). Parental death, shifting family dynamics, and female identity development. Omega, 51(2), 87–105.Google Scholar
Cerel, J., Fristad, M.A., Verducci, J., et al. (2006). Childhood bereavement: Psychopathology in the two years postparental death. Journal of the American Academy of Child and Adolescent Psychiatry, 45(6), 681–690.Google Scholar
Charmaz, K.C. (2006). Constructing grounded theory. Thousand Oaks, CA: Sage.Google Scholar
Christ, G. (2000). Impact of development on children's mourning. Cancer Practice, 8, 72–81.Google Scholar
Christ, G.H. & Christ, A.E. (2006). Current approaches to helping children cope with a parent's terminal illness. CA: A Cancer Journal for Clinicians, 56(4), 197–212.Google Scholar
Davey, M., Askew, J. & Godette, K. (2003). Parent and adolescent responses to non-terminal parental cancer: A retrospective, multiple-case pilot study. Families, Systems, & Health, 21, 245–258 Google Scholar
Dehlin, L. & Reg, L.M. (2009). Adolescents' experiences of a parent's serious illness and death. Palliative & Supportive Care, 7(1), 13–25.Google Scholar
Dowdney, L. (2000). Annotation: Childhood bereavement following parental death. Journal of Child Psychology and Psychiatry, and Allied Disciplines, 41(7), 819–830.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.Google Scholar
Folkner, R.A. & Davey, M. (2002). Children and adolescents of cancer patients: The impact of cancer on the family. The American Journal of Family Therapy, 30, 63–72.Google Scholar
Gazendam-Donofrio, S.M., Hoekstra, H.J., Winette, T.A., et al. (2010). Adolescents' emotional reactions to parental cancer: Effect on emotional and behavioral problems. Journal of Pediatric Psychology, 36(3), 346–359.Google Scholar
Giesbers, J., Verdonck-de Leeuw, I.M., van Zuuren, F.J., et al. (2010). Coping with parental cancer: Web-based peer support in children. Psycho-Oncology, 19, 887–892.Google Scholar
Glaser, B.G. (1978). Theoretical sensitivity: Advances in the methodology of grounded theory. Mill Valley, CA: Sociology Press.Google Scholar
Glaser, B.G. & Straus, A.L. (1967). The discovery of grounded theory: Strategies for qualitative research. Chicago: Aldine.Google Scholar
Gray, L.B., Weller, R.A., Fristand, M., et al. (2011). Depression in children and adolescents two months after the death. Journal of Affective Disorders, 135, 277–283.Google Scholar
Huizinga, G.A., van der Graaf, W.T., Visser, A., et al. (2003). Psychosocial consequences for children of a parent with cancer. Cancer Nursing, 26, 195–202.Google Scholar
Huizinga, G.A., Visser, A., van der Graaf, W.T., et al. (2005). The quality of communication between parents and adolescent children in the case of parental cancer. Annals of Oncology, 16, 1956–1961.Google Scholar
Kennedy, V.L. & Lloyd-Williams, M. (2009). How children cope when a parent has advanced cancer. Psycho-Oncology, 18, 886–892.Google Scholar
Krattenmacher, T., Kuhne, F., Ernst, J., et al. (2012). Parental cancer: Factors associated with children's psychosocial adjustment. A systematic review. Journal of Psychosomatic Research, 72, 344–356.Google Scholar
Ļevina, J. & Ivanova, N. (2012). The self-concept of adolescents with different social status in peer cliques. Baltic Journal of Psychology, 13 (1, 2), 98–112.Google Scholar
Li, J., Vestergaard, M., Cnattingius, S., et al. (2014). Mortality after parental death in childhood: A nationwide cohort study from three Nordic countries. PLoS Medicine, 11(7), e1001679. Available from http://journals.plos.org/plosmedicine/article?id=10.1371/journal.pmed.1001679.Google Scholar
Melhem, N.M., Walker, M., Mortiz, G., et al. (2008). Antecedents and sequelae of sudden parental death in offspring and surviving caregivers. Archives of Pediatrics & Adolescent Medicine, 162(5), 403–410.Google Scholar
National Hospice and Palliative Care Organization (NHPCO) (2013). NHPCO's facts and figures: Hospice care in America. Available from http://www.nhpco.org/sites/default/files/public/Statistics_Research/2013_Facts_Figures.pdf.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(3), 255–265.Google Scholar
Phillips, F. (2014). The experience of adolescents who have a parent with advanced cancer: A phenomenological inquiry. Palliative & Supportive Care. doi: http://dx.doi.org/10.1017/S1478951514001023. Epub ahead of print September 3, 2014.Google Scholar
QSR International (2010). NVivo qualitative data analysis program. Melbourne: QSR International.Google Scholar
Riley, J. & Fenton, G. (2007). A terminal diagnosis: The carers' perspective. Counselling and Psychotherapy Research, 7(2), 86–91.Google Scholar
Saldinger, A., Cain, A. & Porterfield, K. (2003). Managing traumatic stress in children anticipating parental death. Psychiatry, 66(2), 168–181.Google Scholar
Saldinger, A., Cain, A. & Porterfield, K. (2005). Traumatic stress in children anticipating parental death. The Prevention Researcher, 12(4), 17–20.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.Google Scholar
Sheehan, D.K., Draucker, C.B., Christ, G.H., et al. (2014).Telling adolescents a parent is dying. Journal of Palliative Medicine, 17(5), 512–520.Google Scholar
Smetana, J.G. (2011). Adolescents, families, and social development: How teens construct their worlds. West Sussex: Wiley–Blackwell.Google Scholar
Thastum, M., Johansen, M.B., Gubba, L., et al. (2008). Coping, social relations, and communication: A qualitative exploratory study of children of parents with cancer. Clinical Child Psychology and Psychiatry, 13(1), 123–138.Google Scholar
Timko, C., Cronkite, R.C., Berg, E.A., et al. (2002). Children of parents with unipolar depression: A comparison of stably remitted, partially remitted, and non-remitted parents and non-depressed controls. Child Psychiatry & Human Development, 32, 165–185.Google Scholar
Vanheule, S. & Hauser, S. (2008). A narrative analysis of helplessness in depression. Journal of the American Psychoanalytic Association, 56, 1309–1330.Google Scholar
Visser, A., Huizinga, G.A., van der Graff, 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
Zabora, J., Brintzenhofeszoc, K., Curbow, B., et al. (2001). The prevalence of psychological distress by cancer site. Psycho-Oncology, 10, 19–28.Google Scholar