An office or a bedroom? Challenges for family-centered care in the pediatric intensive care unit

Journal of Child Health Care

Volumn 16, Issue 3, 2012, Pages 237-249

  Macdonald, Mary Ellen ^a   Liben, Stephen ^a   Carnevale, Franco A ^a   Cohen, S Robin ^a  

^a MCGILL UNIVERSITY   (Canada)

Author keywords

ethnography; family centered care; intensive care; pediatrics; Qualitative approaches

Indexed keywords

ADOLESCENT; ARTICLE; CHILD; CONSUMER; FAMILY NURSING; FEMALE; HUMAN; INFANT; INTENSIVE CARE UNIT; MALE; NONBIOLOGICAL MODEL; PRESCHOOL CHILD; PROSPECTIVE STUDY; QUALITATIVE RESEARCH;

ADOLESCENT; CHILD; CHILD, PRESCHOOL; CONSUMER SATISFACTION; FAMILY NURSING; FEMALE; HUMANS; INFANT; INTENSIVE CARE UNITS, PEDIATRIC; MALE; MODELS, ORGANIZATIONAL; PROSPECTIVE STUDIES; QUALITATIVE RESEARCH;

EID: 84872400129     PISSN: 13674935     EISSN: 17412889     Source Type: Journal    
DOI: 10.1177/1367493511430678     Document Type: Article

References (54)

1. Family pediatrics: Report of the task force on the family.Pediatrics. 2003;111:1541-1571.
2. Family-centered care and the pediatrician's role.Pediatrics. 2003;112:691-696.
3. Ayres L,Kavanaugh K,Knafl KA.Within-case and across-case approaches to qualitative data analysis.Qualitative Health Research. 2003;13:871-883.
4. Balluffi A,Kassam-Adams N,Kazak A,et al.Traumatic stress in parents of children admitted to the pediatric intensive care unit.Pediatric Critical Care Medicine. 2004;5:547-553.
5. Blower K,Morgan E.Great expectations?.Parental participation in care. Journal of Child Health Care. 2000;4:60-65.
6. Braner D,Lai S,Hodo R,et al.Interactive web sites for families and physicians of pediatric intensive care unit patients.Pediatric Critical Care Medicine. 2004;5:434-439.
7. Carnevale FA.The experience of critically ill children: Narratives of unmaking.Intensive and Critical Care Nursing. 1997;13:49-52.
8. Carnevale FA.Authentic qualitative research and the quest for methodological rigour.Canadian Journal of Nursing Research. 2002;34:121-128.
9. Carnevale FA.Families are not visitors: Rethinking our relationships in the ICU.Australian Critical Care. 2005;18:48-49.
10. Carnevale FA,Canouï P,Hubert P,et al.The moral experience of parents regarding life-support decisions for their critically-ill children: A preliminary study in France.Journal of Child Health Care. 2006;10:69-82.
11. Carno MF,Connolly H.Sleep and sedation in the pediatric intensive care unit.Critical Care Nursing Clinics of North America. 2005;17:239-244.
12. Colville G,Darkins J,Hesketh J,et al.The impact on parents of a child's admission to intensive care: Integration of qualitative findings from a cross-sectional study.Intensive and Critical Care Nursing. 2009;25:72-79.
13. Cureton-Lane R,Fontaine D.Sleep in the pediatric ICU: An empirical investigation.American Journal of Critical Care. 1997;6:56-63.
14. 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.Critical Care Medicine. 2007;35:605-622.
15. Dewalt KM,Dewalt BRParticipant Observation: A Guide for Fieldworkers. Walnut Creek, CA: AltaMira Press; 2002:.
16. Emerson R,Fretz R,Shaw LWriting Ethnographic Fieldnotes. Chicago, IL: University of Chicago Press; 1995:.
17. Farrell MF,Frost C.The most important needs of parents of critically ill children: Parents' perceptions.Intensive and Critical Care Nursing. 1992;8:130-139.
18. Frazier A,Frazier H,Warren NA.A discussion of family-centered care within the pediatric intensive care unit.Critical Care Nursing Quarterly. 2010;33:82-86.
19. Frey B,Ersch J,Bernet V,et al.Involvement of parents in critical incidents in a neonatal-paediatric intensive care unit.Quality & Safety in Health Care. 2009;18:446-449.
20. Giacomini MK,Cook DJ.Users' guides to the medical literature: XXIII.Qualitative research in health care A. Are the results of the study valid? Evidence-based medicine working group. Journal of American Medical Association. 2000;284:357-362.
21. Giannini A,Miccinesi G.Parental presence and visiting policies in Italian pediatric intensive care units: A national survey.Pediatric Critical Care Medicine. 2011;12:e46-e50.
22. Giganti AW.Families in pediatric critical care: The best option.Pediatric Nursing. 1998;24:261-265.
23. Heater BS.Nurses responsibilities in changing visiting restrictions in the intensive care unit.Heart & Lung. 1985;14:181-186.
24. Johnson BH.Family-centered care: Four decades of progress.Families, Systems & Health. 2000;18:137-137.
25. Just AC.Parent participation in care: Bridging the gap in the pediatric ICU.Newborn & Infant Nursing Reviews. 2005;5:179-187.
26. Latour J,Van Goudoever J,Duivenvoorden H,et al.Differences in the perceptions of parents and healthcare professionals on pediatric intensive care practices.Pediatric Critical Care Medicine. 2011;12 (5): e211-215.
27. Letourneau NL,Elliott MR.Pediatric health care professionals' perceptions and practices of family-centered care.Children's Health Care. 1996;25:157-174.
28. Lilly M.A personal reflection: Critical care family communication.Dimensions of Critical Care Nursing. 2008;27:213-217.
29. Ellen Macdonald Mary, et al.Parental perspectives on hospital staff members' acts of kindness and commemoration after a child's death.Pediatrics. 2005;116 (4): 884-90.
30. Macdonald ME,Liben S,Cohen SR.Truth and consequences: Parental perspectives on autopsy after the death of a child.Pediatric Intensive Care Nursing. 2006;7 (1): 6-15.
31. Macdonald Mary Ellen,Murray MA.The Appropriateness of Appropriate?: Smuggling Values into Clinical Practice.Canadian Journal of Nursing Research. 2007;39 (4): 58-73.
32. Macdonald ME, et al.Signs of life and signs of death: brain death and other mixed messages at the end of life.Journal Child Health Care. 2008;12 (2): 92-105.
33. Macnab AJ,Emérton-Downey J,Phillips N,et al.Purpose of family photographs displayed in the pediatric intensive care unit.Heart & Lung: The Journal of Acute and Critical Care. 1997;26:68-75.
34. Maxton FJC.Old habits die hard: Changing paediatric nurses' perceptions of families in ICU.Intensive and Critical Care Nursing. 1997;13:145-150.
35. 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.Pediatric Critical Care Medicine. 2008;9:623-628.
36. Meert KL,Briller SH,Schim SM,et al.Examining the needs of bereaved parents in the pediatric intensive care unit: A qualitative study.Death Studies. 2009;33:712-740.
37. 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.
38. Meyer EC,Snelling LK,Myren-Manbeck LK.Pediatric intensive care: The parents' experience.AACN Advanced Critical Care. 1998;9:64-74.
39. Milette IH,Carnevale FA.I'm trying to heal... Noise levels in a pediatric intensive care unit.Dynamics. 2003;14:14-21.
40. Morrison WE,Haas EC,Shaffner DH,et al.Noise, stress, and annoyance in a pediatric intensive care unit.Critical Care Medicine. 2003;31:113-119.
41. Mu P,Tomlinson P.Parental experience and meaning construction during a pediatric health crisis.Western Journal of Nursing Research. 1997;19:608-636.
42. Namachivayam P,Shann F,Shekerdemian L,et al.Three decades of pediatric intensive care: Who was admitted, what happened in intensive care, and what happened afterward.Pediatric Critical Care Medicine. 2010;11:549-555.
43. NelsonLPGoldJI (In press) Posttraumatic stress disorder in children and their parents following admission to the pediatric intensive care unit: A review. Pediatric Critical Care Medicine13. Available at:http://journals.lww.com/pccmjournal/Abstract/publishahead/Posttraumatic_stress_disorder_in_children_and.99414.aspx.
44. Playfor SD.Analgesia and sedation in critically ill children.Archives of Disease in Childhood. 2008;93:87-92.
45. Proctor DL.Relationship between visitation policy in a pediatric intensive unit and parental anxiety.Children's Health Care. 1987;16:13-17.
46. Rajaratnam JK,Marcus JR,Flaxman AD,et al.Neonatal, postneonatal, childhood, and under-5 mortality for 187 countries, 1970-2010: A systematic analysis of progress towards Millennium Development Goal 4.Lancet. 2010;375:1988-2008.
47. Ramnarayan P,Craig F,Petros A,et al.Characteristics of deaths occurring in hospitalised children: Changing trends.Journal of Medical Ethics. 2007;33:255-260.
48. Rozdilsky JR.Enhancing sibling presence in pediatric ICU.Critical Care Nursing Clinics of North America. 2005;17:451-461.
49. Sandelowski M.The problem of rigor in qualitative research.Advances in Nursing Science. 1986;8:27-37.
50. Sinuff T,Cook DJ,Giacomini M.How qualitative research can contribute to research in the intensive care unit.Journal of Critical Care. 2007;22:104-111.
51. Smith AB,Hefley GC,Anand KJS.Parent bed spaces in the PICU: Effect on parental stress.Pediatric Nursing. 2007;33:215-221.
52. Stremler R,Wong L,Parshuram C.Practices and provisions for parents sleeping overnight with a hospitalized child.Journal of Pediatric Psychology. 2008;33:292-297.
53. Tomlinson PS,Thomlinson E,Peden-Mcalpine C,et al.Clinical innovation for promoting family care in paediatric intensive care: Demonstration, role modelling and reflective practice.Journal of Advanced Nursing. 2002;38:161-170.
54. Trapanotto M,Benini F,Farina M,et al.Behavioural and physiological reactivity to noise in the newborn.Journal of Paediatrics and Child Health. 2004;40:275-281.