Hostname: page-component-586b7cd67f-vdxz6 Total loading time: 0 Render date: 2024-11-22T10:58:56.407Z Has data issue: false hasContentIssue false
  • English
  • Français

Young people's perspectives on open communication between family members when a parent is dying

Published online by Cambridge University Press:  03 July 2017

Nicola Turner
Nicola Turner*
Affiliation:
Nottingham Centre for the Advancement of Research into Supportive, Palliative and End-of-life Care (NCARE), School of Health Sciences, University of Nottingham, Nottingham, UK
*
Address correspondence and reprint requests to: Nicola Turner, Nottingham Centre for the Advancement of Research into Supportive, Palliative, and End-of-Life Care, Queen's Medical Centre, Nottingham, NG7 2HA, England. E-mail: [email protected].
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective:

Living with a parent who is approaching the end of life is profoundly troubling for young people. Research indicates that family communication about life-limiting parental illness can influence how young people manage living with dying. In particular, open communication between family members has been shown to be helpful. This paper reports on a study of young people's experiences of family interaction when a parent is dying and considers the practice of open communication in the context of young people's involvement in giving and receiving family care.

Methods:

A narrative approach was employed based on in-depth semistructured interviews with 10 young people (aged 13–21) living with a parent thought to be in the last year of life.

Results:

Young people's attitudes toward open communication between family members were more ambivalent and ambiguous than previous research suggests. Parental attempts at open communication were sometimes overlooked by young people, indicating that there may be differences between knowledge given and young people's acknowledgment of sensitive information. Some young people valued open communication as a signifier of the close relationships between family members, while others wanted to exercise more control over what they knew, when, and how. Young people's accounts challenged the positioning of young people as passive recipients of information. Young people were active in shaping family communication in their everyday lives, and deliberative acts of speaking or remaining silent were one way in which young people exercised care for themselves and others.

Significance of Results:

This study extends research on communication within families when a parent has a life-limiting illness and suggests that supporting young people's agency in determining how they receive information may be more beneficial than promoting open communication between family members.

Keywords

Young peopleCommunicationParental illnessDying
Type
Original Article
Information
Palliative & Supportive Care , Volume 16 , Special Issue 4: Topics in Bereavement , August 2018 , pp. 414 - 420
Copyright
Copyright © Cambridge University Press 2017 

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

Almack, K., Cox, K., Moghaddam, N., et al. (2012). After you: Conversations between patients and healthcare professionals in planning for end-of-life care. BMC Palliative Care, 11, 15.Google Scholar
Alvariza, A., Lövgren, M., Bylund-Grenklo, T., et al. (2016). How to support teenagers who are losing a parent to cancer: Bereaved young adults' advice to healthcare professionals. A nationwide survey. Palliative & Supportive Care, 15(3), 313–319.Google Scholar
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(6), 564–570.Google Scholar
Beale, E.A., Sivesind, D. & Bruera, E. (2004). Parents dying of cancer and their children. Palliative & Supportive Care, 2(4), 387–393.Google Scholar
Cancer Research UK (2017). Supporting Children When a Close Relative Is Dying. London: Cancer Research UK. Available from http://www.cancerresearchuk.org/about-cancer/coping-with-cancer/dying/coping/supporting-children-when-a-close-relative-is-dying.Google Scholar
Charmaz, K.C. (2006). Constructing Grounded Theory: A Practical Guide through Qualitative Analysis. London: Sage Publications. Available from http://www.sxf.uevora.pt/wp-content/uploads/2013/03/Charmaz_2006.pdf.Google Scholar
Chowns, G. (2013). “Until it ends, you never know …”: Attending to the voice of adolescents who are facing the likely death of a parent. Bereavement Care, 32(1), 23–30.Google Scholar
Copp, G. & Field, D. (2002). Open awareness and dying: The use of denial and acceptance as coping strategies by hospice patients. Nursing Times Research, 7, 118–127.Google Scholar
Doucet, A. & Mauthner, N.S. (2008). What can be known and how? Narrated subjects and the Listening Guide. Qualitative Research, 8(3), 399–409.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(3), 213–222.Google Scholar
Gilligan, C., Spencer, R., Weinberg, M.K., et al. (2003). On the Listening Guide: A voice-centred relational method. In Qualitative Research in Psychology: Expanding Perspectives in Methodology and Design. Camic, P.M. et al. (eds.), pp. 157–172. Washington, DC: American Psychological Association.Google Scholar
Golsäter, M., Henricson, M., Enskär, K., et al. (2016). Are children as relatives our responsibility? How nurses perceive their role in caring for children as relatives of seriously ill patients. European Journal of Oncology Nursing, 25, 33–39.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(5), 355–362.Google Scholar
Huizinga, G.A., Visser, A., Zelders-Steyn, Y.E., et al. (2011). Psychological impact of having a parent with cancer. European Journal of Cancer, 47(Suppl. 3), S239–S246.Google Scholar
Kennedy, V.L & Lloyd-Williams, M. (2009). How children cope when a parent has advanced cancer. Psycho-Oncology, 18(8), 886–892.Google Scholar
Kopchak Sheehan, K.D., Burke Draucker, C., Christ, G.H., et al. (2014). Telling adolescents a parent is dying. Journal of Palliative Medicine, 17(5), 512–520.Google Scholar
Lindqvist, B., Schmitt, F., Santalahti, P., et al. (2007). Factors associated with the mental health of adolescents when a parent has cancer. Scandinavian Journal of Psychology, 48(4), 345–351.Google Scholar
MacPherson, C. (2005). Telling children their ill parent is dying: A study of the factors influencing the well parent. Mortality, 10(2), 113–126.Google Scholar
Mason, J. (2002). Qualitative Researching. London: Sage Publications.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), 1595–1601.Google Scholar
Meriggi, F., Andreis, F., Liborio, N., et al. (2016). Parents with cancer: Searching for the right balance between telling the truth and protecting children. Palliative & Supportive Care, 15(1), 88–97.Google Scholar
Morris, J.N., Martini, A. & Preen, D. (2016). The well-being of children impacted by a parent with cancer: An integrative review. Supportive Care in Cancer, 24(7), 3235–3251.Google Scholar
National Council for Palliative Care (2011). Commissioning End-of-Life Care. London: National Council for Palliative Care. Available from http://www.ncpc.org.uk/sites/default/files/AandE.pdf.Google Scholar
Notko, M., Jokinen, K., Malinen, K., et al. (2013). Encountering ethics in studying challenging family relations. Families, Relationships, and Societies, 2(3), 395–408.Google 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.Google Scholar
Prout, A. & James, A. (1997). A new paradigm for the sociology of childhood? Provenance, promise and problems. In Constructing and Reconstructing Childhood: Contemporary Issues in the Sociological Study of Childhood. James, A. & Prout, A. (eds.), pp. 7–32. London: Routledge.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(5), 519–534.Google Scholar
Riessman, C.K. (2002). Analysis of personal narratives. In Handbook of Interview Research. Gubrium, J.F. & Holstein, J.A. (eds.), pp. 695–710. Thousand Oaks, CA: Sage Publications.Google Scholar
Richards, N., Ingleton, C., Gardiner, C., et al. (2013). Awareness contexts revisited: Indeterminacy in initiating discussions at the end of life. Journal of Advanced Nursing, 69(12), 2654–2664.Google Scholar
Semple, C.J. & McCance, T. (2010). Parents' experience of cancer who have young children: A literature review. Cancer Nursing, 33(2), 110–118.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
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), 35–145.Google Scholar
Turner, N. & Almack, K. (2016). Recruiting young people to sensitive research: Turning the “wheels within wheels.” International Journal of Social Research Methodology. Epub ahead of print Jul 26. doi: 10.1080/13645579.2016.1207943.Google Scholar
Ungerson, C. (1983). Why do women care? In A Labour of Love: Women, Work and Caring. Finch, J. & Groves, D. (eds.), pp. 31–49. London: Routledge & Kegan Paul.Google Scholar