Place, age, and mode of death of infants and children with hypoplastic left heart syndrome: Implications for medical counselling, psychological counselling, and palliative care

Journal of Palliative Care

Volumn 24, Issue 2, 2008, Pages 76-84

  Cantwell Bartl, Annie M ^a   Tibballs, James ^a,b  

^a UNIVERSITY OF MELBOURNE   (Australia)

^b ROYAL CHILDREN'S HOSPITAL   (Australia)

Author keywords

[No Author keywords available]

Indexed keywords

EID: 47749153390     PISSN: 08258597     EISSN: None     Source Type: Journal    
DOI: 10.1177/082585970802400203     Document Type: Article

References (42)

1. Birkeland A-L, Rydberg A, Hägglöf B. The complexity of the psychosocial situation in children and adolescents with heart disease. Acta Paediatr 2005; 94: 1495-1501.
2. Tibballs J. Kawahira Y, Carter B, Donath S, Brizard C, Wilkinson J. Outcomes of surgical treatment of infants with hypoplastic left heart syndrome; an institutional experience 1983-2004. J Paediatr Child Health 2007; 43: 746-751.
3. Bailey LL, Gundry SR. Hypoplastic left heart syndrome. Pediatr Clin N Am 1990; 37(1): 137-150.
4. Hagemo PS, Skarbø. A-B, Rasmussen M, Fredriksen PM, Schage S. An extensive long-term follow up of a cohort of patients with hypoplasia of the left heart. Cardiol Young 2007; 17 (1): 51-55.
5. Mahle WT, Clancy RR, Moss EM, Gerdes M, Jacobs DR, Wernovsky G. Neurodevelopmental outcome and lifestyle assessment in school-aged and adolescent children with the hypoplastic left heart syndrome. Pediatrics 2000; 105(5): 1082-1089.
6. Mahle WT, Clancy RR, McGaurn SP, Pharm D, Goin JE, Clark, BJ. Impact of prenatal diagnosis on survival and early neurologic morbidity in neonates with the hypoplastic left heart syndrome. Pediatrics 2001; 107(6): 1277-1282.
7. Mahle WT, Wernovsky G. Neurodevelopmental outcomes in hypoplastic left heart syndrome. Parent and physician perspectives on quality of care. Semin Thorac Cardiovasc Surg Pediatr Card Surg Annu 2004; 7: 39-47.
8. Copnell B. Death in the pediatric ICU: caring for children and families at the end of life. Grit Care Nurs Clin North Am 2005; 17(4): 349-360.
9. Tibballs J, Cantwell-Bartl A. Outcomes of management decisions by parents for their infants with hypoplastic left heart syndrome born with and without a prenatal diagnosis. J Paediatr Child Health 2008; 44(6): 323-325.
10. Hynson JL, Sawyer SM. Paediatric palliative care. Distinctive needs and emerging issues. J Paediatr Child Health 2001; 37 (4): 323-325.
11. Bruce EJ, Schultz CL, Smyrnios KX. A longitudinal study of the grief of mothers and fathers of children with intellectual disability. Br J Med Psychol 1996; 69: 33-45.
12. Kazak AE. Alderfer MA, Streisand R, Simms S, Rourke MT, Barakat LP, et al. Treatment of post-traumatic stress symptoms in adolescent survivors of childhood cancer and their families: a randomized clinical trial. J Fam Psychol 2004; 18(3): 493-504.
13. Landolt MA, Boehler U, Schwager C, Schallberger U, Nuessli R. Post traumatic stress disorder in paediatric patients and their parents: an exploratory study. J Paediatr Child Health 1998; 34(6): 539-543.
14. Landolt MA, Vollrath M, Laimbacher J, Gnehm HE, Sennhauser FH. Prospective study of post-traumatic stress disorder in parents of children with newly diagnosed type 1 diabetes. J Am Acad Child Adolesc Psychiatry 2005; 44(7): 682-689.
15. Landolt MA, Vollrath M, Ribi K, Gnehm HE, Sennhauser FH. Incidence and associations of parental and child post-traumatic stress symptoms in pediatric patients. J Child Psychol Psychiatry 2003; 44(8): 1199-1207.
16. Balluffi A, Kassam-Adams N, Kazak A, Tucker M, Dominguez T, Helfaer M. Traumatic stress in parents of children admitted to the pediatric intensive care unit. Pediatric Crit Care Med 2004; 5(6): 547-553.
17. Rando TA (ed). Clinical Dimensions of Anticipatory Mourning: Theory and Practice in Working with the Dying, Their Loved Ones and Their Caregivers. Champaign, IL: Research Press, 2000.
18. Vandvik IH, Forde R. Ethical issues in parental decision making. An interview study of mothers of children with hypoplastic left heart syndrome. Acta Paediatr 2000; 89(9): 1129-1133.
19. Weiner JS, Roth J. Avoiding iatrogenic harm to patient and family while discussing goals of care near the end of life. J Palliat Med 2006; 9(2): 451-463.
20. Finucane TE. Care of patients nearing death: another view. J Am Geriatr Soc 2002; 50: 551-553.
21. Heaman DJ. Perceived Stressors and coping strategies of parents who have children with developmental disabilities: a comparison of mothers with fathers. J Pediatr Nurs 1995; 10(5): 311-320.
22. Cuskelly M. Adjustment of siblings of children with a disability: methodological issues. Int J Adv Couns 1999; 21(2): 111-124.
23. Seligman M. Sources of psychological disturbance among siblings of handicapped children. Pers Guid J 1983; 61(9): 529-531.
24. Dyregrov A, Dyregrov K. Long-term impact of sudden infant death: a 12- to 15-year follow up. Death Stud 1999; 23(7): 635-661.
25. Engel GL. Is grief a disease? A challenge for medical research. Psychosom Med 1961; 23(1): 18-22.
26. Dyregrov A, Matthieson SB. Similarities and differences in mothers' and fathers' grief following the death of an infant. Scand J Psychol 1987; 28(1): 1-15.
27. Boelen PA, van den Bout J, de Keijser J. Traumatic grief as a disorder distinct from bereavement-related depression and anxiety: a replication study with bereaved mental health care patients. Am J Psychiatry 2003; 160(7): 1339-134.
28. Jacobs S, Mazure C, Prigerson H. Diagnostic criteria for traumatic grief. Death Stud 2000; 24(3): 185-199.
29. Catharall DR. Back From the Brink: a Family Guide to Overcoming Traumatic Stress. New York: Bantam Books, 1992.
30. Raphael B. The Anatomy of Bereavement. A Handbook for the Caring Professions. London: Hutchinson, 1985.
31. Smeding R. Education or interpretation: Development of a teaching model for palliative and bereavement care. Unpublished PhD thesis. Cincinnati, Ohio: Union Institute, 1996.
32. Chase ND (ed). Burdened Children: Theory, Research and Treatment of Parentification. Thousand Oaks, CA: Sage; 1999.
33. Engle UT, Hardt R, Nickel B, Kappis B, Hoffmann SO. Early stress and its long-term effects on health-state of the art and implications for future research. Z Psychosom Med Psychother 2002; 48(4): 411-434.
34. Papadatou D. Training health professionals in caring for dying children and grieving families. Death Stud 1997; 21(6): 575-600.
35. D Klass, PR Silverman, SL Nickman (eds). Continuing Bonds: New Understandings of Grief. Washington, DC: Taylor & Francis, 1996.
36. American Academy of Pediatrics, Committee on Bioethics and Committee on Hospital Care: Palliative care for children. Pediatrics 2000; 106(2): 351-357.
37. Frager G. Pediatric palliative care: building the model, bridging the gaps. J Palliat Care 1996; 12(3): 9-12.
38. Frager G. Palliative care and terminal care of children. Child Adolesc Psychiatr Clin North Am 1997; 6: 889-909.
39. Liben S. Pediatric palliative medicine: obstacles to overcome. J Palliat Care 1996; 12(3): 24-28.
40. World Health Organization. Cancer Pain Relief and Palliative Care in Children. Geneva: World Health Organization, 1998.
41. Roy DJ. When newborn babies have to die...perinatal palliative care? J Palliat Care 2007; 23(2): 67.
42. Mack JW, Hilden JM, Watterson J, Moore C, Turner B, Grier HE, et al. Parent and physician perspectives on quality of care at the end of life in children with cancer. J Clin Oncol 2005; 23(36): 9155-9161.