Supportive and palliative care needs of families of children who die from cancer: an Australian study

Abstract

Objective To obtain feedback from parents of children who died from cancer about their understanding of palliative care, their experiences of palliative and supportive care received during their child's illness, and their palliative and supportive care needs. Design A qualitative study with semi-structured interviews. Participants: 24 parents from Perth (n = 10), Melbourne (n = 5), Brisbane (n = 5) and Sydney (n = 4). Setting: Five Australian tertiary paediatric oncology centres. Results Parents whose children died from cancer live within a context of chronic uncertainty and apprehension. Parents construed palliative care negatively as an independent process at the end of their children's lives rather than as a component of a wider and continuous process where children and their families are offered both curative and palliative care throughout the cancer trajectory. The concept of palliative care was perceived to be misunderstood by key health professionals involved in the care of the child and family. The importance and therapeutic value of authentic and honest relationships between health professionals and parents, and between health professionals and children were highlighted as a critical aspect of care. Also highlighted was the need to include children and adolescents in decision making, and for the delivery of compassionate end-of-life care that is sensitive to the developmental needs of the children, their parents and siblings. Conclusions There is a need for health professionals to better understand the concept of palliative care, and factors that contribute to honest, open, authentic and therapeutic relationships of those concerned in the care of the dying child. This will facilitate a better understanding by both parents and their children with cancer, and acceptance of the integration of palliative and supportive care in routine cancer care. Palliative Medicine 2008; 22 : 59—69

Keywords

cancer children families palliative care supportive care

Get full access to this article

View all access options for this article.

References

Frager G. Pediatric palliative care: building the model, bridging the gaps. J Palliat Care 1996; 12(3): 9—12.

Chaffee S. Pediatric palliative care. Primary Care: Clin Office Practice 2001; 28(2): 365—90.

Hutchinson F. , King N. , Hain RDW

Terminal care in paediatrics: Where are we now?

Postgrad Med J 2003; 79: 566—8.

Davies B. , Reimer JC , Martens N. Family functioning and its implications for palliative care. J Palliat Care 1994; 10(1): 29—36.

Stephenson J. Palliative and hospice care needed for children with life threatening conditions. JAMA 2000 ; 284(19): 2437—8.

American Academy of Pediatrics, Committee of Bioethics and Committee of Hospital Care. Palliative care for children. Pediatrics 2000; 106(2): 351—7.

World Health Organisation. National Cancer Control Programs: policies and managerial guidelines, second edition. Geneva: WHO, 2002.

Monterosso L. , Kristjanson LJ An Australian analysis of the palliative and supportive care needs of families of children dying from cancer. Perth: Edith Cowan University, 25 July 2005. Report No.: ISBN 0-7298-0606-5.

Glasser BG , Strauss AL The discovery of grounded theory: strategies for qualitative research . New York: Adline Press, 1967.

10.

Eiser C. Growing up with a chronic disease: the impact on children and their families . London: Jessica Kinglsey , 1993.

11.

Sloper P. Needs and responses of parents following the diagnosis of childhood cancer . Child Care Health Dev 1996; 22(3): 187—202.

12.

Davies B. , Steele R. Paediatric palliative care. Prog Palliat Care 1995; 3(3): 5—8.

13.

Monterosso L. , Kristjanson L. , Phillips M. , Rowell S. , Watson M. Paediatric palliative and supportive care. Caring for life: the needs of children and families in Western Australia. Perth: Edith Cowan University, 2005 .

14.

Milne D.

Not icing on the cake: how clinicians view palliative care. Asia Pac

J Clin Oncol 2007; 3(Suppl 1): A16.

15.

Cook S.

How is palliative care communicated? Asia Pac

J Clin Oncol 2007; 3(Suppl 1): A16.

16.

Himelstein BP , Hilden JM , Boldt AM , Weissman DE Pediatric palliative care. N Engl J Med 2004; 350(17): 1752—62.

17.

Wolfe J. , Klar N. , Grier HG et al. Understanding of prognosis among parents of children who died of cancer. Impact on treatment goals and integration of palliative care. JAMA 2000; 284(19): 2469—75.

18.

Ulrich CM , Grady C. , Wendler D. Palliative Care: A supportive adjunct to paediatric clinical trials for anticancer agents? Commentary. Pediatrics 2004; 114(3): 852—5.

19.

Mack JW , Hilden JM , Watterson J. et al. Patient and physician perspectives on quality of care at the end of life in children with cancer. J Clin Oncol 2005; 23(36): 9155—61.

20.

Meyer EC , Ritholz MD , Burns PI , Truog RD Improving the quality of end-of-life care in the pediatric intensive care unit: parents' priorities and recommendations. Pediatrics 2006; 117(3): 649—57.