Parent's Perceptions of Health Care Providers Actions Around Child ICU Death: What Helped, What Did Not

American Journal of Hospice and Palliative Medicine

Volumn 30, Issue 1, 2013, Pages 40-49

  Brooten, Dorothy ^a   Youngblut, JoAnne M ^a   Seagrave, Lynn ^a   Caicedo, Carmen ^a   Hawthorne, Dawn ^a   Hidalgo, Ivette ^a   Roche, Rosa ^a  

^a FLORIDA INTERNATIONAL UNIVERSITY   (United States)

Author keywords

child death; health care provider actions around child death; lack of hospice and palliative care; NICU death; parent's perception of provider actions; PICU death

Indexed keywords

ADULT; CHILD; EMPATHY; ETHNIC GROUP; FEMALE; HEALTH PERSONNEL ATTITUDE; HOSPITALIZED CHILD; HUMAN; HUMAN RELATION; INFANT; INTENSIVE CARE UNIT; INTERPERSONAL COMMUNICATION; INTERVIEW; MALE; MIDDLE AGED; NEWBORN INTENSIVE CARE; ORGANIZATION AND MANAGEMENT; PARENT; PERCEPTION; PSYCHOLOGY; SEX DIFFERENCE; STATISTICS AND NUMERICAL DATA;

ADULT; ATTITUDE OF HEALTH PERSONNEL; CHILD; CHILD, HOSPITALIZED; COMMUNICATION; EMPATHY; ETHNIC GROUPS; FEMALE; HUMANS; INFANT; INTENSIVE CARE UNITS, NEONATAL; INTENSIVE CARE UNITS, PEDIATRIC; INTERVIEWS AS TOPIC; MALE; MIDDLE AGED; PARENTS; PERCEPTION; PROFESSIONAL-FAMILY RELATIONS; SEX FACTORS;

EID: 84871649202     PISSN: 10499091     EISSN: None     Source Type: Journal    
DOI: 10.1177/1049909112444301     Document Type: Article

References (47)

1. Heron M.Deaths: leading causes for 2007.Natl Vital Stat Rep. 2011;59 (8): 1-95.
2. Ramnarayan P,Craig F,Petros A,Pierce C.Characteristics of deaths occurring in hospitalised children: changing trends.J Med Ethics. 2007;33 (5): 255-260.
3. White DL,Walker AJ,Richards LN.Intergenerational family support following infant death.Int J Aging Human Dev. 2008;67 (3): 187-208.
4. deCinque N,Monterosso L,Dadd G,Sidhu R,Macpherson R,Aoun S.Bereavement support for families following the death of a child with cancer: experience of bereaved parents.J Psychol Oncol. 2006;24 (2): 65-83.
5. Meert K,Briller S,Schim S,Thurston C.Exploring parents' environmental needs at the time of a child's death in the pediatric intensive care unit.Pediatr Crit Care Med. 2008;9 (6): 623-628.
6. Flynn L,McCollum J.Support for rural families of hospitalized infants: the parents' perspective.Child Health Care. 1993;22 (1): 19-37.
7. Contro N,Davies B,Larson J,Sourkes B.Away from home: experiences of Mexican American families in pediatric palliative care.J Soc Work End Life Palliat Care. 2010;6 (3-4): 185-204.
8. Knapp CA,Contro N.Family support services in pediatric palliative care.Am J Hosp Palliat Care. 2010;26 (6): 476-82.
9. Brosig C,Pierucci RL,Kupst MJ,Leuthner SR.Infant end of life care: the parents' perspective.J Perinatol. 2007;27 (8): 510-516.
10. Meert K,Briller S,Schim S,Thurston C,Kabel A.Examining the needs of bereaved parents in the pediatric intensive care unit: a qualitative study.Death Stud. 2009;33 (8): 712-740.
11. Meyer EC,Ritholz MD,Burns JP,Truog RD.Improving the quality of end-of-life care in the pediatric intensive care unit: parents' priorities and recommendations.Pediatrics. 2006;117 (3): 649-657.
12. Robertson MJ,Aldridge A,Curley AE.Provision of bereavement care in neonatal units in the United Kingdom.Pediatr Crit Care Med. 2011;12 (3): 111-115.
13. Reilly DE,Huws JC,Hastings RP.Vaughan FL. "When your child dies you don't belong in that world any more"-Experiences of mothers whose child with an intellectual disability has died.J Appl Res Intellect Disabil. 2008;21 (6): 546-560.
14. Meert K,Thurston C,Briller S.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 (4): 420-427.
15. Widger K,Picot C.Parents' perceptions of the quality of pediatric and perinatal end-of-life care.Pediatr Nurs. 2008;34 (1): 53-58.
16. Rodgers SK,Gomez CF,Carpenter P, et al.Quality of life for children with life-limiting and life-threatening illnesses: description and evaluation of a regional, collaborative model for pediatric palliative care.Am J Hosp Palliat Care. 2011;28 (3): 161-170.
17. Davies B,Contro N,Larson J,Widger K.Culturally-sensitive information-sharing in pediatric palliative care.Pediatrics. 2010;125 (4): 859-865.
18. Pector EA.Views of bereaved multiple-birth parents on life support decisions, the dying process, and discussions surrounding death.J Perinatol. 2004;24 (1): 4-10.
19. Michelson KN,Koogler T,Sullivan C,del Pilar Ortega M,Hall E,Frader J.Parental views on withdrawing life sustaining therapies in critically injured children.Arch Pediatr Adolesc Med. 2009;163 (11): 986-992.
20. deJong-Berg MA,Kane L.Bereavement care for families part 2: evaluation of a paediatric follow-up programme.Int J Palliat Nurs. 2006;12 (10): 484-494.
21. MacDonald M,Liben S,Carnevale F, et al.Parental perspectives on hospital staff members' acts of kindness and commemoration after a child's death.Pediatrics. 2005;116 (4): 884-890.
22. Needle J,O'Riordan M,Smith P.Parental anxiety and medical comprehension within 24 hours of a child's admission to the pediatric intensive care unit.Pediatr Crit Care Med. 2009;10 (6): 668-674.
23. Levetown M.Communicating with children and families: from everyday interactions to skills in conveying distressing information.Pediatrics. 2008;121 (5): 1441-1460.
24. Fletcher PN.Experiences in family bereavement.Fam Community Health. 2002;25 (1): 57-70.
25. Waters CM.Understanding and supporting African Americans' perspectives on end-of-life care planning and decision making.Qual Health Res. 2001;11 (3): 385-398.
26. Doty MM,Ives BLQuality of Health Care for Hispanic Populations: Findings from the Commonwealth Fund 2001. Health Care Quality Survey (526). New York, NY: Commonwealth Fund; 2002:.
27. Ramirez AG.Consumer-provider communication research with special populations.Patient Educ Couns. 2003;50 (1): 51-54.
28. Jind L,Elklit A,Christiansen D.Cognitive schemata and processing among parents bereaved by infant death.J Clin Psychol Med Settings. 2010;17 (4): 366-377.
29. Toedter D,Iredell J,Rodger D Gunn A.Neonatal death: grieving families.Med J Aust. 1986;144 (6): 290-292.
30. Znoj H,Keller D.Mourning parents: considering safeguards and their relation to health.Death Stud. 2002;26 (7): 545-565.
31. Dyregrov A,Matthiesen SB.Parental grief following the death of an infant - a follow-up over one year.Scand J Psychol. 1991;32 (3): 193-207.
32. Murphy SA.A bereavement intervention for parents following the sudden, violent deaths of their 12- to 28-year-old children: description and applications to practice.Can J Nurs Res. 1997;29 (4): 51-72.
33. Sirkia K,Saarinen-Pihkala UM,Hovi L.Coping of parents and siblings with the death of a child with cancer: death after terminal care compared with death during active anticancer therapy.Acta Paediatr. 2000;89 (6): 717-721.
34. Vance JC,Boyle FM,Najman JM,Thearle MJ.Gender differences in parental psychological distress following perinatal death or sudden infant death syndrome.Br J Psychiatry. 1995;167 (6): 806-811.
35. Vance JC,Najman JM,Thearle MJ,Embelton G,Foster WJ,Boyle FM.Psychological changes in parents eight months after the loss of an infant from stillbirth, neonatal death, or sudden infant death syndrome - a longitudinal study.Pediatrics. 1995;96 (5 pt 1): 933-938.
36. Schwab R.Gender differences in parental grief.Death Stud. 1996;20 (2): 103-113.
37. Wood JD,Milo E.Fathers' grief when a disabled child dies.Death Stud. 2001;25 (8): 635-661.
38. Cordell AS,Thomas N.Fathers and grieving: coping with infant death.J Perinatol. 1990;10 (1): 75-80.
39. Lannan P,Wolfe J,Mack J,Onelov E,Nyberg U,Kreicbergs U.Absorbing information about a child's incurable cancer.Oncology. 2010;78 (3-4): 259-266.
40. Meyer E,Burns J,Griffith J,Truog R.Parental perspectives on end of life care in the pediatric intensive care unit.Crit Care Med. 2002;30 (1): 226-231.
41. Gold KJ.Navigating care after a baby dies: a systematic review of parent experiences with health providers.J Perinatol. 2007;27 (4): 230-237.
42. Blackhall L,Murphy F,Palmer M,Azen S.Ethnicity and attitudes toward life sustaining technology.Soc Sci Med. 1999;48 (12): 1779-1789.
43. Linton J,Feudtner C.What accounts for differences or disparities in pediatric palliative and end of life care? A systematic review focusing on possible multilevel mechanisms.Pediatrics. 2008;122 (3): 574-582.
44. Bullock K.The influence of culture on end of life decision making.J Soc Work End Life Palliat Care. 2011;7 (1): 83-98.
45. Docherty S,Miles M,Brandon D.Searching for the dying point: providers' experiences with palliative care in pediatric acute care.Pediatr Nurs. 2007;33 (4): 335-341.
46. Lawrence N.Care of bereaved parents after sudden infant death.Emerg Nurse. 2010;18 (3): 22-25.
47. Keane EA,Hutton N,Hall B,Rushton C.Bereavement debriefing sessions: an intervention to support health care professionals in managing their grief after the death of a patient.Pediatr Nurs. 2010;36 (4): 185-189.