Children Dying from Cancer: Parents' perspectives on symptoms, quality of life, characteristics of death, and end-of-life decisions

Journal of Palliative Care

Volumn 28, Issue 4, 2012, Pages 274-281

  Von Lützau, Pia ^a,b   Otto, Michael ^b   Hechler, Tanja ^b   Metzing, Sabine ^b   Wolfe, Joanne ^c   Zernikow, Boris ^b  

^a Children's and Adolescents' Hospital   (Germany)

^b UNIVERSITY OF WITTEN HERDECKE   (Germany)

^c HARVARD MEDICAL SCHOOL   (United States)

Author keywords

Cancer; Children; End of life care period; End of life decision

Indexed keywords

EID: 84872700866     PISSN: 08258597     EISSN: None     Source Type: Journal    
DOI: 10.1177/082585971202800406     Document Type: Article

References (44)

1. BeyerS. Geschlechtersensible Hospiz - und Palliativbetreuung und - begleitung (Gender-sensitive hospice and palliative care support and supervision). Hospiz-Dialog Nordrhein-Westfalen 2009; 41: 7-9.
2. HusmannG, KaatschP, KatalinicA, et al. Cancer in children. In: Cancer in Germany, 2005/2006: incidence and trends. 7th ed. Berlin: Robert Koch Institute, Association of Population-Based Cancer Registries in Germany; 2010. ( Federal health reporting).
3. Goldman A. ABC of palliative care: special problems of children. Br Med J 1998; 316(7124): 49-52. (Pubitemid 28019872)
4. World Health Organization. Cancer pain relief and palliative care in children. Geneva: author, International Association for the Study of Pain; 1998.
5. European Association for Palliative Care. IMPaCCT: standards for paediatric palliative care in Europe. Eur J Palliat Care 2007; 14( 3): 109-114.
6. German Society for Palliative Medicine. Spezialisierte Ambulante Palliativversorgung in Deutschland ( Specialized outpatient palliative care in Germany). Berlin, 2011. http:// www.ag-sapv.de/einrichtungen-uebersicht.html Accessed October 15, 2012.
7. Wolfe J, Grier HE, Klar N, et al. Symptoms and suffering at the end of life in children with cancer. N Engl J Med 2000; 342(5): 326-333. (Pubitemid 30075247)
8. SaadR, HuljerHAS, NoureddineS, et al. Bereaved parental evaluation of the quality of a palliative care program in Lebanon. Pediatr Blood Cancer 2011; 57( 2): 310-316.
9. Meyer EC, Bums JP, Griffith JL, et al. Parental perspectives on end-of-life care In the pediatric intensive care unit. Crit Care Med 2002; 30(1): 226-231. (Pubitemid 34112200)
10. Hechler T, Blankenburg M, Friedrichsdorf S, et al. Parents' perspective on symptoms, quality of life, characteristics of death and end-of-life decisions for children dying from cancer. Klin Pädiatr 2008; 220(3): 166-174. (Pubitemid 351758159)
11. HindsPS, SchumL, BakerJN, et al. Key factors affecting dying children and their families. J Pall Med 2005; 8( 1 Suppl): S70-S78.
12. KreicbergsU, ValdimarsdottirU, OnelövE, et al. Care-related distress. A nationwide study of parents who lost their child to cancer. J Clin Oncol 2005; 23( 36): 9162-9171.
13. PritchardM, BurghenE, SrivastavaDK, et al. Cancer-related symptoms most concerning to parents during the last week and last day of their child's life. Pediatrics 2008; 121( 5): e1301-e1309.
14. PritchardM, BurghenEA, GattusoJS, et al. Factors that distinguish symptoms of most concern to parents from other symptoms of dying children. J Pain Symptom Manage 2010; 39( 4): 627-636.
15. DupuisLL, Milne-WrenC, CassidyM, et al. Symptom assessment in children receiving cancer therapy: the parents perspective. Support Care Cancer 2010; 18( 3): 281-299.
16. Goldman A, Hewitt M, Collins GS, et al. Symptoms in children/young people with progressive malignant disease: United Kingdom Children's Cancer Study Group/Paediatric Oncology Nurses Forum survey. Pediatr 2006; 117(6): e1179-e1186. (Pubitemid 46071215)
17. .Theunissen JM, Hoogerbrugge PM, van Achterberg T, et al. Symptoms in the palliative phase of children with cancer. Pediatr Blood Cancer 2007; 49(2): 160-165. (Pubitemid 47041106)
18. ZernikowB, MichelE, CraigF, et al. Pediatric palliative care: use of opioids for the management of pain. Pediatr Drugs 2009; 11( 2): 129-151.
19. ZeltzerLK, AltmanA, CohenD. American Academy of Pediatrics report of the Subcommittee on the Management of Pain Associated with Procedures in Children with Cancer. Pediatrics 1990; 86( 5, 2Pt): 826-831.
20. PöderU, LjungmannG, von EssenL. Parent's perception of their children's cancer-related symptoms during treatment: a prospective, longitudinal study. J Pain Symptom Manage 2010; 40( 5): 661-670.
21. MillerE, JacobE, HockenberryMJ. Nausea, pain, fatigue, and multiple symptoms in hospitalized children with cancer. Oncol Nurs Forum 2011; 38( 5): e382-e393.
22. KestlerSA, LoBiondo-WoodG. Review of symptom experiences in children and adolescents with cancer. Cancer Nurs 2012; 35( 2): e31-e49.
23. Hedström M, Haglund K, Skolin I, et al. Distressing events for children and adolescents with cancer: child, parent, and nurse perceptions. J Pediatr Oncol Nurs 2003; 20(3): 120-132. (Pubitemid 38251128)
24. Liossi C, White P, Franck L, et al. Parental pain expectancy as a mediator between child expected and experienced procedure-related pain intensity during painful medical procedures. Clin J Pain 2007; 23(5): 392-399. (Pubitemid 46791486)
25. Hendricks-FergusonV. Physical symptoms of children receiving pediatric hospice care at home during the last week of life. Oncol Nurs Forum 2008; 35( 6): e108-e115.
26. UllrichC, DusselV, HildenJM. Fatigue in children with cancer at the end of life. J Pain Symptom Manage 2010; 40( 4): 483-494.
27. Gibson F. Evidence in action: fostering growth of researchbased practice in children's cancer nursing. Eur J Oncol Nurs 2005; 9(1): 8-20. (Pubitemid 40361582)
28. StoneP, RichardsonA, ReamE, et al. Cancer-related fatigue: inevitable, unimportant and untreatable? Results of a multicentre patient survey. Cancer Fatigue Forum. Ann Oncol 2000; 11( 8): 971-975.
29. National Institutes of Health. NIH state-of-the-science statement on symptom management in cancer: pain, depression, and fatigue. NIH Consens State Sci Statements 2002; 19( 4): 1-29.
30. NailLM. Fatigue in patients with cancer. One Nurs Forum 2002; 29( 3): 537-546.
31. Gibson F, Garnett M, Richardson A, et al. Heavy to carry: a survey of parents' and healthcare professionals' perceptions of cancer-related fatigue in children and young people. Cancer Nurs 2005; 28(1): 27-35. (Pubitemid 40250622)
32. FosterTL, LafondDA, ReggioC, et al. Pediatric palliative care in childhood cancer nursing: from diagnosis to cure or end of life. Semin Oncol Nurs 2010; 26( 4): 205-221.
33. Surkan PJ, Dickman PW, Steineck G, et al. Home care of a child dying of malignancy and parental awareness of a child's impending death. Palliat Med 2006; 20(3): 161-169. (Pubitemid 43871333)
34. Papadatou D, Yfantopoulos J, Kosmidis HV. Death of a child at home or in hospital: experiences of Greek mothers. Death Stud 1996; 20(3): 215-235. (Pubitemid 26154124)
35. Clarke JN, Fletcher P. Communication issues faced by parents who have a child diagnosed with cancer. J Pediatr Oncol Nurs 2003; 20(4): 175-191. (Pubitemid 39089913)
36. Wong MY, Chan SW. The qualitative experience of Chinese parents with children diagnosed of cancer. J Clin Nurs 2006; 15(6): 710-717. (Pubitemid 43965684)
37. RingnérA, JanssonL, GraneheimUH. Parental experiences of information within pediatric oncology. J Pediatr Oncol Nurs 2011; 28( 4): 244-251.
38. HindsPS, OakesL, FurmannW, et al. Decision making by parents and healthcare professionals when considering continued care for pediatric patients with cancer. Oncol Nurs Forum 1997; 24( 9): 1523-1528.
39. Drake R, Frost J, Collins JJ. The symptoms of dying children. J Pain Symptom Manage 2003; 26(1): 594-603. (Pubitemid 36802283)
40. DusselV, KreicbergsU, HildenJM, et al. Looking beyond where children die: determinants and effects of planning a child's location of death. J Pain Symptom Manage 2009; 37( 1): 33-43.
41. JüngerS, PastranaT, PestingerM, et al. Barriers and needs in paediatric palliative home care in Germany: a qualitative interview study with professional experts. BMC Palliat Care 2010; 9: 10-21.
42. Dyregrov K. Bereaved parents' experience of research participation. Soc Sci Med 2004; 58(2): 391-400. (Pubitemid 37353051)
43. Scott DA, Valery PC, Boyle FM, et al. Does research Into sensitive areas do harm? Experiences of research participation after a child's diagnosis with Ewing's sarcoma. Med J Aust 2002; 177(9): 507-510. (Pubitemid 35373439)
44. HindsPS, BurghenEA, PritchardM. Conducting end-of-life studies in pediatric oncology. West J Nurs Res 2007; 29( 4): 448-465.