To describe parents’ perspectives of health care provider actions that helped or did not around the time of infant/child’s intensive care unit (ICU) death. Semistructured interviews with 63 parents (Black, White, and Hispanic) 7 months post infant/child death were audio-recorded, transcribed, analyzed, and themes identified.
Findings:
What helped most: compassionate, sensitive staff; understandable explanations of infant’s/child’s condition; experienced, competent nurses; providers did everything to help infant/child; and parents’ involvement in care decisions. What did not help: insensitive, nonsupportive staff; conflict between providers and parents; communication problems around the death; inexperienced nurses and doctors; parents not understanding child’s disease, care, complications.
Conclusions:
Compassionate, sensitive staff and understandable explanations of children’s conditions were most helpful; insensitive, nonsupportive staff least helpful by gender, racial group, or care setting. Conflict between providers and parents was most problematic for minority parents and mothers.
HeronM. Deaths: leading causes for 2007. Natl Vital Stat Rep. 2011;59(8):1–95.
2.
RamnarayanPCraigFPetrosAPierceC. Characteristics of deaths occurring in hospitalised children: changing trends. J Med Ethics. 2007;33(5):255–260.
3.
WhiteDLWalkerAJRichardsLN. Intergenerational family support following infant death. Int J Aging Human Dev. 2008;67(3):187–208.
4.
deCinqueNMonterossoLDaddGSidhuRMacphersonRAounS. 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.
MeertKBrillerSSchimSThurstonC. 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.
FlynnLMcCollumJ. Support for rural families of hospitalized infants: the parents’ perspective. Child Health Care. 1993;22(1):19–37.
7.
ControNDaviesBLarsonJSourkesB. 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.
KnappCAControN. Family support services in pediatric palliative care. Am J Hosp Palliat Care. 2010;26(6):476–82.
9.
BrosigClPierucciRLKupstMJLeuthnerSR. Infant end of life care: the parents’ perspective. J Perinatol. 2007;27(8):510–516.
10.
MeertKBrillerSSchimSThurstonCKabelA. Examining the needs of bereaved parents in the pediatric intensive care unit: a qualitative study. Death Stud. 2009;33(8):712–740.
11.
MeyerECRitholzMDBurnsJPTruogRD. 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.
RobertsonMJAldridgeACurleyAE. Provision of bereavement care in neonatal units in the United Kingdom. Pediatr Crit Care Med. 2011;12(3):111–115.
13.
ReillyDEHuwsJCHastingsRP, 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.
MeertKThurstonCBrillerS. 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.
WidgerKPicotC. Parents’ perceptions of the quality of pediatric and perinatal end-of-life care. Pediatr Nurs. 2008;34(1):53–58.
16.
RodgersSKGomezCFCarpenterP. 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.
DaviesBControNLarsonJWidgerK. Culturally-sensitive information-sharing in pediatric palliative care. Pediatrics. 2010;125(4):859–865.
18.
PectorEA. 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.
MichelsonKNKooglerTSullivanCdel Pilar OrtegaMHallEFraderJ. Parental views on withdrawing life sustaining therapies in critically injured children. Arch Pediatr Adolesc Med. 2009;163(11):986–992.
20.
deJong-BergMAKaneL. Bereavement care for families part 2: evaluation of a paediatric follow-up programme. Int J Palliat Nurs. 2006;12(10):484–494.
21.
MacDonaldMLibenSCarnevaleF. Parental perspectives on hospital staff members’ acts of kindness and commemoration after a child’s death. Pediatrics. 2005;116(4):884–890.
22.
NeedleJO’RiordanMSmithP. 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.
LevetownM. Communicating with children and families: from everyday interactions to skills in conveying distressing information. Pediatrics. 2008;121(5):1441–1460.
24.
FletcherPN. Experiences in family bereavement. Fam Community Health. 2002;25(1):57–70.
25.
WatersCM. Understanding and supporting African Americans’ perspectives on end-of-life care planning and decision making. Qual Health Res. 2001;11(3):385–398.
26.
DotyMMIvesBL. Quality of Health Care for Hispanic Populations: Findings from the Commonwealth Fund 2001. Health Care Quality Survey (526). New York, NY: Commonwealth Fund; 2002.
27.
RamirezAG. Consumer-provider communication research with special populations. Patient Educ Couns. 2003;50(1):51–54.
28.
JindLElklitAChristiansenD. Cognitive schemata and processing among parents bereaved by infant death. J Clin Psychol Med Settings. 2010;17(4):366–377.
29.
ToedterDIredellJRodger D GunnA. Neonatal death: grieving families. Med J Aust. 1986;144(6):290–292.
30.
ZnojHKellerD. Mourning parents: considering safeguards and their relation to health. Death Stud. 2002;26(7):545–565.
31.
DyregrovAMatthiesenSB. Parental grief following the death of an infant – a follow-up over one year. Scand J Psychol. 1991;32(3):193–207.
32.
MurphySA. 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.
SirkiaKSaarinen-PihkalaUMHoviL. 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.
VanceJCBoyleFMNajmanJMThearleMJ. Gender differences in parental psychological distress following perinatal death or sudden infant death syndrome. Br J Psychiatry. 1995;167(6):806–811.
35.
VanceJCNajmanJMThearleMJEmbeltonGFosterWJBoyleFM. 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.
SchwabR. Gender differences in parental grief. Death Stud. 1996;20(2):103–113.
37.
WoodJDMiloE. Fathers’ grief when a disabled child dies. Death Stud. 2001;25(8):635–661.
38.
CordellASThomasN. Fathers and grieving: coping with infant death. J Perinatol. 1990;10(1):75–80.
39.
LannanPWolfeJMackJOnelovENybergUKreicbergsU. Absorbing information about a child’s incurable cancer. Oncology. 2010;78(3-4):259–266.
40.
MeyerEBurnsJGriffithJTruogR. Parental perspectives on end of life care in the pediatric intensive care unit. Crit Care Med. 2002;30(1):226–231.
41.
GoldKJ. Navigating care after a baby dies: a systematic review of parent experiences with health providers. J Perinatol .2007;27(4):230–237.
42.
BlackhallLMurphyFPalmerMAzenS. Ethnicity and attitudes toward life sustaining technology. Soc Sci Med. 1999;48(12):1779–1789.
43.
LintonJFeudtnerC. 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.
BullockK. The influence of culture on end of life decision making. J Soc Work End Life Palliat Care. 2011;7(1):83–98.
45.
DochertySMilesMBrandonD. Searching for the dying point: providers’ experiences with palliative care in pediatric acute care. Pediatr Nurs. 2007;33(4):335–341.
46.
LawrenceN. Care of bereaved parents after sudden infant death. Emerg Nurse. 2010;18(3):22–25.
47.
KeaneEAHuttonNHallBRushtonC. 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.
