Palliative care of children with brain tumors: A parental perspective

Archives of Pediatrics and Adolescent Medicine

Volumn 164, Issue 3, 2010, Pages 225-230

  Zelcer, Shayna ^a   Cataudella, Danielle ^a   Cairney, A Elizabeth L ^a   Bannister, Susan L ^b  

^a LONDON HEALTH SCIENCES CENTRE   (Canada)

^b UNIVERSITY OF CALGARY   (Canada)

Author keywords

[No Author keywords available]

Indexed keywords

ADULT; AGED; ARTICLE; BRAIN TUMOR; CANCER MORTALITY; CHILD; CHILD PARENT RELATION; COPING BEHAVIOR; FAMILY; FEMALE; HOPE; HUMAN; INFANT; INTERPERSONAL COMMUNICATION; MALE; PALLIATIVE THERAPY; PRESCHOOL CHILD; PRIORITY JOURNAL; SCHOOL CHILD; SEMI STRUCTURED INTERVIEW; SPIRITUAL CARE; ADAPTIVE BEHAVIOR; ADOLESCENT; ATTITUDE TO DEATH; ATTITUDE TO HEALTH; DAILY LIFE ACTIVITY; HOME CARE; INFORMATION PROCESSING; MIDDLE AGED; PARENT; PSYCHOLOGICAL ASPECT; QUALITATIVE RESEARCH; RELIGION;

ACTIVITIES OF DAILY LIVING; ADAPTATION, PSYCHOLOGICAL; ADOLESCENT; ADULT; ATTITUDE TO DEATH; BRAIN NEOPLASMS; CHILD; CHILD, PRESCHOOL; FEMALE; FOCUS GROUPS; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HOME CARE SERVICES; HUMANS; INFANT; MALE; MIDDLE AGED; PALLIATIVE CARE; PARENTS; QUALITATIVE RESEARCH; SPIRITUALITY; YOUNG ADULT;

EID: 77950363586     PISSN: 10724710     EISSN: 15383628     Source Type: Journal    
DOI: 10.1001/archpediatrics.2009.284     Document Type: Article

References (27)

1. Pritchard M, Burghen E, Srivastava DK, 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. doi:10.1542/peds.2007-2681.
2. 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.
3. Jalmsell L, Kreicbergs U, Onelöv E, Steineck G, Henter JI. Symptoms affecting children with malignancies during the last month of life: a nationwide follow-up. Pediatrics. 2006;117(4):1314-1320.
4. Contro NA, Larson J, Scofield S, Sourkes B, Cohen HJ. Hospital staff and family perspectives regarding quality of pediatric palliative care. Pediatrics. 2004; 114(5):1248-1252.
5. Woodgate RL. Living in a world without closure: reality for parents who have experienced the death of a child. J Palliat Care. 2006;22(2):75-82.
6. Kreicbergs U, Valdimarsdottir U, Onelov E, Henter JI, Steineck G. Talking about death with children who have severe malignant disease. N Engl J Med. 2004; 351(12):1175-1186.
7. Pace A, Di Lorenzo C, Lorenzo CD, et al. End of life issues in brain tumor patients [published correction appears in J Neurooncol. 2009;91(1):45]. J Neurooncol. 2009;91(1):39-43.
8. Goldman A, Hewitt M, Collins GS, Childs M, Hain R; United Kingdom Children's Cancer Study Group/Paediatric Oncology Nurses' Forum Palliative Care Working Group. Symptoms in children/young people with progressive malignant disease: United Kingdom Children's Cancer Study Group/Paediatric Oncology Nurses Forum Survey. Pediatrics. 2006;117(6):e1179-e1186.
9. Hongo T, Watanabe C, Okada S, et al. Analysis of the circumstances at the end of life in children with cancer: symptoms suffering and acceptance. Pediatr Int. 2003;45(1):60-64.
10. Steinhauser KE, Clipp EC, McNeilly M, Christakis NA, McIntyre LM, Tulsky JA. In search of a good death: observations of patients, families, and providers. Ann Intern Med. 2000;132(10):825-832.
11. Vickers JL, Carlisle C. Choices and control: parental experiences in pediatric terminal home care. J Pediatr Oncol Nurs. 2000;17(1):12-21.
12. D'Agostino NM, Berlin-Romalis D, Jovcevska V, Barrera M. Bereaved parents' perspectives on their needs. Palliat Support Care. 2008;6(1):33-41.
13. Hudson P. Focus group interviews: a guide for palliative care researchers and clinicians. Int J Palliat Nurs. 2003;9(5):202-207.
14. Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006; 3(2):77-101. doi:10.1191/1478088706qp063oa.
15. Maxwell JA. Understanding and validity in qualitative research. Harv Educ Rev. Fall 1992;62:279-300.
16. Miles MB, Huberman AM. Qualitative Data Analysis. 2nd ed. Thousand Oaks, CA: Sage Publications; 1994.
17. Auerbach CF, Silverstein LB. Qualitative Data: An Introduction to Coding and Analyzing Data in Qualitative Research. New York, NY: New York University Press; 2003.
18. Dangel T, Fowler-Kerry S, Karwacki M, et al. An evaluation of a home palliative care programme for children. Ambul Child Health. 2000;6(2):101-114. doi:10.1046/j.1467-0658.2000.00064.x.
19. Hannan J, Gibson F. Advanced cancer in children: how parents decide on final place of care for their dying child. Int J Palliat Nurs. 2005;11(6):284-291.
20. Widger KA, Wilkins K. What are the key components of quality perinatal and pediatric end-of-life care? a literature review. J Palliat Care. 2004;20(2):105-112.
21. Barrera M, D'Agostino N, Gammon J, Spencer L, Baruchel S. Health-related quality of life and enrollment in phase 1 trials in children with incurable cancer. Palliat Support Care. 2005;3(3):191-196.
22. Watanabe K, MacLeod R. Care for dying patients with primary malignant brain tumor. Neurol Med Chir (Tokyo). 2005;45(12):657-659.
23. Chochinov HM, Hack T, McClement S, Kristjanson L, Harlos M. Dignity in the terminally ill: a developing empirical model. Soc Sci Med. 2002;54(3):433-443.
24. Hinds PS, Drew D, Oakes LL, et al. End-of-life care preferences of pediatric patients with cancer. J Clin Oncol. 2005;23(36):9146-9154.
25. Dyregrov K. Bereaved parents experience of research participation. Soc Sci Med. 2004;58(2):391-400.
26. Hinds PS, Burghen EA, Pritchard M. Conducting end of life studies in pediatric oncology. West J Nurs Res. 2007;29(4):448-465.
27. Rosenblatt PC. Ethics of qualitative interviewing with grieving families. Death Stud. 1995;19(2):139-155.