What are the Key Components of Quality Perinatal and Pediatric End-of-Life Care? A Literature Review

Foley G.V. , Whittam E.H. Care of the child dying of cancer: Part 1. CA Cancer J Clin 1990; 40(6): 327–354.

Sterling Y. Resource needs of mothers managing chronically ill infants at home. Neonatal Network 1990; 9(1): 55–59.

Hanson L.C. , Danis M. , Garrett J. What is wrong with end-of-life care? J Am Geriatr Soc 1997; 45: 1339–1344

Wallston K.A. , Burger C. , Smith R.A. , Baugher R.J. Comparing the quality of death for hospice and non-hospice cancer patients. Med Care 1988; 26: 177–182

Wolfe J. , Grier H.E. , Klar N. , Levin S.B. , Ellenbogen J.M. , Salem-Schatz S. Symptoms and suffering at the end of life in children. N Engl J Med 2000; 342(5): 326–333.

Teno J.M. , Clarridge B. , Casey V. , Edgman-Levitan S. , Fowler J. Validation of toolkit after-death bereaved family member interview. J Pain Symptom Manage 2001; 22: 752–758.

Higginson I.J. Audit methods: a community schedule. In: Higginson IJ (ed). Clinical Audit in Palliative Care. Oxford: Radcliffe Medical Press, 1993; pp. 34–47.

Hearn J. , Higginson I.J. Development and validation of a core outcome measure for palliative care: the palliative care outcome scale. Qual Health Care 1999; 8(4): 219–227.

Halfon N. , Schuster M. , Valentine W. , McGlynn E. Improving the quality of healthcare for children: Implementing the results of the AHSR research agenda conference. Health Serv Res 1998; 33(4): 955–976.

Mangione-Smith R. , McGlynn E.A. Assessing the quality of healthcare provided to children. Health Serv Res 1998; 33(4): 1059–1090.

Haas M. A critique of patient satisfaction. Health Information Management 1999; 29(1): 9–13.

Sexton P.R. , Stephen S.B. Postpartum mothers’ perceptions of nursing interventions for perinatal grief. Neonatal Network 1991; 9(5): 47–51.

Cuisinier M. , Kuijpers J. , Hoogduin C. , de Graauw C. , Janssen H. Miscarriage and stillbirth: time since the loss, grief intensity, and satisfaction with care. Eur J Obstet Gynecol Reprod Biol 1993; 52: 163–168.

Calhoun L.K. Parents’ perceptions of nursing support following neonatal loss. J Perinatal Neonat Nurs 1994; 8(2): 57–66.

Harper M. , Wisian N. Care of bereaved parents: a study of patient satisfaction. J Reprod Med 1994; 39(2): 80–86.

Lasker J.N. , Toedter L.J. Satisfaction with hospital care and interventions after pregnancy loss. Death Stud 1994; 18: 41–64.

Perinatal Loss Program Committee. Recommendations from Questionnaire. Unpublished. Halifax, Nova Scotia: IWK Health Centre, 1994.

Malacrida C.A. Perinatal death: helping parents find their way. J Fam Nurs 1997; 3(2): 130–148.

Neidig J.R. , Dalgas-Pelish P. Parental grieving and perceptions regarding health care professionals’ interventions. Issues in Comprehensive Pediatr Nurs 1991; 14: 179–191.

Finlay I. , Dallimore D. Your child is dead. BMJ 1991; 302: 1524–1525.

Stewart E.S. Family-centred care for the bereaved. Ped Nurs 1995; 21(2): 181–187.

Dent A. , Condon L. , Blair P. , Fleming P. A study of bereavement care after a sudden and unexpected death. Arch Dis Child 1996; 74: 522–526.

Papadatou D. , Yfantopoulous J. , Kosmidis H.V. Death of a child at home or in hospital: experiences of Greek mothers. Death Stud 1996; 20(3): 215–235.

While A. , Citrone C. , Cornish J. Bereaved parents’ views of caring for a child with a life-limiting disorder. London: King's College, 1996.

Ahrens W. , Hart R. , Maruyama N. Pediatric death: managing the aftermath in the emergency department, J Emerg Med 1997; 15(5): 601–603.

James L. , Johnson B. The needs of parents of pediatric oncology patients during the palliative care phase. J Pediatr Oncol Nurs 1997; 14(2): 83–95.

Mitchell I. , MacDonald T. , Widger K. , Adair C. Bereavement response to the death of a child. Poster presentation. 8^th European Society for the Study and Prevention of Infant Death Conference, 2000; Jerusalem, Israel.

Vickers J.L. , Carlisle C. Choices and control: parental experiences in pediatric terminal home care. J Pediatr Oncol Nurs 2000; 17(1): 12–21.

Contro N. , Larson J. , Scofield S. , Sourkes B. , Cohen H. Family perspectives on the quality of pediatric palliative care. Arch Pediatr Adolesc Med 2002; 156: 14–19.

American Academy of Pediatrics, Committee on Pediatric Emergency Medicine. Death of a child in the emergency department. Pediatrics 1994; 93(5): 861–862.

Primeau M.R. , Lamb J.M. When a baby dies: rights of the baby and parents. J Obstet Gynecol Neonatal Nurs 1995; 24(3): 206–208.

Association for Children with Life-Threatening or Terminal Conditions and their Families, and the Royal College of Paediatrics and Child Health. A Guide to the Development of Children's Palliative Care Services. London: Authors, 1997

Masera G. , Spinetta J.J. , Jankovic M. , Ablin A.R. , D'Angio G.J. , Dongen-Melman J. Guidelines for assistance to terminally ill children with cancer: a report of the SIOP working committee on psychosocial issues in pediatric oncology. Med Pediatr Oncol 1999; 32: 44–48.

American Academy of Pediatrics, Committee on Bioethics and Committee on Hospital Care. Palliative care for children. Pediatrics 2000; 106(2): 351–357.

Canadian Pediatric Society. Guidelines for health care professional supporting families experiencing a perinatal loss. Pediatr Child Health 2001; 6(7): 469–477.

Teno J.M. , Casey V.A. , Welch L.C. , Edgman-Levitan S. Patient-focused, family-centred end-of-life medical care: views of the guidelines and bereaved family members. J Pain Symptom Manage 2001; 22: 738–751.

Gaynor S. Patient surveys. J Child Family Nurs, 1999; 2(2), 153–154.

Fowler F.J. , Coppola K.M. , Teno J.M. Methodological challenges for measuring quality care at the end of life. J Pain Symptom Manage 1999; 17(2), 114–119.