I was able to still be her mom-parenting at end of life in the pediatric intensive care unit

Pediatric Critical Care Medicine

Volumn 13, Issue 6, 2012, Pages

  McGraw, Sarah A ^a   Truog, Robert D ^a,b,c   Solomon, Mildred Z ^b,c   Cohen Bearak, Adena ^c   Sellers, Deborah E ^a   Meyer, Elaine C ^c  

^a EDUCATION DEVELOPMENT CENTER   (United States)

^b BOSTON CHILDREN S HOSPITAL   (United States)

^c HARVARD MEDICAL SCHOOL   (United States)

Author keywords

end of life care; parenting; pediatric intensive care unit; qualitative

Indexed keywords

ADULT; ARTICLE; CHILD; CHILD CARE; CLINICAL ARTICLE; FAMILY; HUMAN; INTENSIVE CARE UNIT; LOVE; MOTHER; MOTHER CHILD RELATION; PARENTHOOD; PRIORITY JOURNAL; QUALITATIVE RESEARCH; RESPONSIBILITY; SEMI STRUCTURED INTERVIEW; TELEPHONE; TERMINAL CARE;

ADULT; CHILD; CHILD, PRESCHOOL; FATHERS; FEMALE; HUMANS; INFANT; INFANT, NEWBORN; INTENSIVE CARE UNITS, PEDIATRIC; INTERVIEWS AS TOPIC; MALE; MOTHERS; ORGANIZATIONAL POLICY; PARENT-CHILD RELATIONS; PARENTING; RETROSPECTIVE STUDIES; TERMINAL CARE; YOUNG ADULT;

EID: 84869864770     PISSN: 15297535     EISSN: 19473893     Source Type: Journal    
DOI: 10.1097/PCC.0b013e31825b5607     Document Type: Article

References (45)

1. Shudy M, de Almeida ML, Ly S, et al: Impact of pediatric critical illness and injury on families: A systematic literature review. Pediatrics 2006; 118 Suppl 3:S203-S218 (Pubitemid 46397530)
2. Meyer EC, Snelling LK, Myren-Manbeck LK: Pediatric intensive care: The parents' experience. AACN Clin Issues 1998; 9:64-74
3. Meyer EC, Ritholz MD, Burns JP, et al: Improving the quality of end-of-life care in the pediatric intensive care unit: Parents' priorities and recommendations. Pediatrics 2006; 117:649-657 (Pubitemid 46063205)
4. Maxton FJC. Parental presence during resuscitation in the PICU: The parents' experience. J Clin Nurs. 2008; 17:3168-3176
5. Meert KL, Briller SH, Schim SM, et al: Exploring parents' environmental needs at the time of a child's death in the pediatric intensive care unit. Pediatr Crit Care Med 2008; 9:623-628
6. Smith AB, Hefley GC, Anand KJ: Parent bed spaces in the PICU: Effect on parental stress. Pediatr Nurs 2007; 33:215-221
7. Miles MS, Carter MC: Coping strategies used by parents during their child's hospitalization in an intensive care unit. Child Health Care 1985; 14:14-21
8. Davidson JE, Powers K, Hedayat KM, et al: Clinical practice guidelines for support of the family in the patient-centered intensive care unit: American College of Critical Care Medicine Task Force 2004-2005. Crit Care Med 2007; 35:605-622 (Pubitemid 46148556)
9. Field MJ, Behrman RE: When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. Washington, DC, National Academies Press, 2003
10. Mack JW, Hilden JM, Watterson J, et al: Parent and physician perspectives on quality of care at the end of life in children with cancer. J Clin Oncol 2005; 23:9155-9161
11. Meyer EC, Burns JP, Griffith JL, et al: Parental perspectives on end-of-life care in the pediatric intensive care unit. Crit Care Med 2002; 30:226-231 (Pubitemid 34112200)
12. Meert KL, Eggly S, Pollack M, et al: National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network: Parents' perspectives on physician-parent communication near the time of a child's death in the pediatric intensive care unit. Pediatr Crit Care Med 2008; 9:2-7
13. Meert KL, Thurston CS, Briller SH: The spiritual needs of parents at the time of their child's death in the pediatric intensive care unit and during bereavement: A qualitative study. Pediatr Crit Care Med 2005; 6:420-427
14. Longden JV: Parental perceptions of end-of-life care on pediatric intensive care units: A literature review. Nurs Crit Care 2011; 16:131-139
15. Robinson MR, Thiel MM, Backus MM, et al: Matters of spirituality at the end of life in the pediatric intensive care unit. Pediatrics 2006; 118:e719-e729 (Pubitemid 46089999)
16. Miceli PJ, Clark PA: Your patient-my child: Seven priorities for improving pediatric care from the parent's perspective. J Nurs Care Qual 2005; 20:43-53
17. Curley MAQ: Critical Care Nursing of Infants and Children. Philadelphia, PA, W.B. Saunders Company, 1996
18. Meert KL, Briller SH, Schim SM, et al: Examining the needs of bereaved parents in the pediatric intensive care unit: A qualitative study. Death Stud 2009; 33:712-740
19. Shields L, Pratt J, Hunter J: Family centred care: A review of qualitative studies. J Clin Nurs 2006; 15:1317-1323 (Pubitemid 44394093)
20. Rushton CH: A framework for integrated pediatric palliative care: Being with dying. J Pediatr Nurs. 2005; 20:311-325
21. Truog RD, Meyer EC, Burns JP: Toward interventions to improve end-of-life care in the pediatric intensive care unit. Crit Care Med 2006; 34(Suppl 11):S373-S379 (Pubitemid 44627428)
22. Corlett J, Twycross A: Negotiation of parental roles within family-centred care: A review of the research. J Clin Nurs 2006; 15:1308-1316 (Pubitemid 44394092)
23. Hinds PS, Oakes LL, Hicks J, et al: "Trying to be a good parent" as defined by interviews with parents who made phase I, terminal care, and resuscitation decisions for their children. J Clin Oncol 2009; 27:5979-5985
24. Rushton CH: Moral Decision-Making by Parents of Infants Who Have Life-Threatening Congenital Disorders. Washington, D.C, School of Nursing, The Catholic University of America, 1994
25. Patrick DL, Engelberg RA, Curtis JR: Evaluating the quality of dying and death. J Pain Symptom Manage 2001; 22:717-726 (Pubitemid 32780510)
26. Curtis JR, Patrick DL, Engelberg RA, et al: A measure of the quality of dying and death. Initial validation using after-death interviews with family members. J Pain Symptom Manage 2002; 24:17-31
27. Patrick DL, Curtis JR, Engelberg RA, et al: Measuring and improving the quality of dying and death. Ann Intern Med 2003; 139(5 Pt 2):410-415 (Pubitemid 38120868)
28. Meert KL, Eggly S, Pollack M, et al: Parents' perspectives regarding a physician-parent conference after their child's death in the pediatric intensive care unit. J Pediatr 2007; 151:50-55, 55.e1-e2
29. Bradley EH, Curry LA, Devers KJ: Qualitative data analysis for health services research: Developing taxonomy, themes, and theory. Health Serv Res 2007; 42:1758-1772 (Pubitemid 47024850)
30. National Institutes of Health State-of-the-Science Conference Statement: Improving End-of-Life Care, December 6-8, 2004, Bethesda, Maryland, U.S. J Palliat Med 2005; 8:8
31. Gillis J, Rennick J: Affirming parental love in the pediatric intensive care unit. Pediatr Crit Care Med 2006; 7:165-168
32. Pate M: Supporting families of technology-dependent patients hospitalized in a pediatric intensive care unit. AACH Adv Crit Care 2008; 19:125-129
33. Kleiber C, Davenport T, Freyenberger B: Open bedside rounds for families with children in pediatric intensive care units. Am J Crit Care 2006; 15:492-496 (Pubitemid 44859690)
34. Dingeman RS, Mitchell EA, Meyer EC, et al: Parent presence during complex invasive procedures and cardiopulmonary resuscitation: A systematic review of the literature. Pediatrics 2007; 120:842-854 (Pubitemid 47549573)
35. Levine C, Zuckerman C: The trouble with families: Toward an ethic of accommodation. Ann Intern Med 1999; 130:148-152 (Pubitemid 29045364)
36. Tarini BA, Lozano P, Christakis DA: Afraid in the hospital: Parental concern for errors during a child's hospitalization. J Hosp Med 2009; 4:521-527
37. Meert KL, Thurston, MA, Sarnaik, AP: End-of-life decision-making and satisfaction with care: Parental perspectives. Pediatr Crit Care Med 2000; 1: 175-186
38. Macdonald ME, Liben S, Carnevale FA, et al: Parental perspectives on hospital staff members' acts of kindness and commemoration after a child's death. Pediatrics 2005; 116:884-890 (Pubitemid 44542814)
39. Heller KS, Solomon MZ: for the Initiative for Pediatric Palliative Care (IPPC) Investigator Team: Continuity of care and caring: What matters to parents of children with life-threatening conditions. J Pediatr Nurs 2005; 20:335-346 (Pubitemid 41330921)
40. James L, Johnson B: The needs of parents of pediatric oncology patients during the palliative care phase. J Pediatr Oncol Nurs 1997; 14:83-95 (Pubitemid 127735547)
41. Brosig CL, Pierucci RL, Kupst MJ, et al: Infant end-of-life care: The parents' perspective. J Perinatol 2007; 27:510-516 (Pubitemid 47180412)
42. 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:e1301-e1309
43. Widger K, Picot C: Parents' perceptions of the quality of pediatric and perinatal end-of-life care. Pediatr Nurs 2008; 34:53-58
44. Wolfe J, Hammel JF, Edwards KE, et al: Easing of suffering in children with cancer at the end of life: Is care changing? J Clin Oncol 2008; 26:1717-1723
45. Browning D, Dokken D: Module one, engaging with children and families (activity 1, speaking the same language). In: The Initiative for Pediatric Palliative Care (IPPC) Curriculum. Solomon M, Browning D, Dokken D, et al (Eds). Newton, MA, Education Development Center, 2003. Available at: http://www. ippcweb.org/module1.asp. Accessed June 6, 2012