Experiencing the pediatric intensive care unit: Perspective from parents of children with severe antecedent disabilities

Critical Care Medicine

Volumn 37, Issue 6, 2009, Pages 2064-2070

  Graham, Robert J ^a   Pemstein, Dvora M ^b   Curley, Martha A Q ^c  

^a BOSTON CHILDREN S HOSPITAL   (United States)

^b Family Professional Partnership Institute   (United States)

^c UNIVERSITY OF PENNSYLVANIA   (United States)

Author keywords

Children with disabilities; Critical illness; Family centered care; Healthcare; Intensive care units; Needs assessment; Pediatric; Qualitative research

Indexed keywords

ADOLESCENT; ADULT; ARTICLE; CHILD; CHILD CARE; CHILDHOOD DISEASE; CLINICAL ARTICLE; CLINICAL FEATURE; CONTROLLED STUDY; DISEASE SEVERITY; FEMALE; HEALTH CARE PERSONNEL; HEALTH SERVICE; HOSPITAL ADMISSION; HUMAN; INFORMATION PROCESSING; INTENSIVE CARE UNIT; INTERPERSONAL COMMUNICATION; INTERVENTION STUDY; MALE; PHYSICAL DISABILITY; PRESCHOOL CHILD; PRIORITY JOURNAL; SCHOOL CHILD; DEVELOPMENTAL DISORDER; HANDICAPPED CHILD; HOSPITALIZATION; INFANT; INTERVIEW; PARENT;

ADOLESCENT; CHILD; CHILD, PRESCHOOL; DEVELOPMENTAL DISABILITIES; DISABLED CHILDREN; FEMALE; HUMANS; INFANT; INTENSIVE CARE UNITS, PEDIATRIC; INTERVIEWS AS TOPIC; MALE; PARENTS; SEVERITY OF ILLNESS INDEX; YOUNG ADULT;

EID: 66449121720     PISSN: 00903493     EISSN: 15300293     Source Type: Journal    
DOI: 10.1097/CCM.0b013e3181a00578     Document Type: Article

References (54)

1. FitzPatrick DR, Skeoch CH, Tolmie JL: Genetic aspects of admissions to a paediatric intensive care unit. Arch Dis Child 1991; 66:639-641
2. Graham RJ, Dumas HM, O'Brien JE, et al: Congenital neurodevelopmental diagnoses and an intensive care unit: Denning a population. Pediatr Crit Care Med 2004; 5:321-328
3. Briassoulis G, Filippou 0, Natsi L, et al: Acute and chronic paediatric intensive care patients: Current trends and perspectives on resource utilization. QJM 2004; 97:507-518
4. Slonim AD, Patel KM, Ruttimann UE, et al: The impact of prematurity: A perspective of pediatric intensive care units [comment]. Crit Care Med 2000; 28:848-853
5. Dosa NP, Boeing NM, Ms N, et al: Excess risk of severe acute illness in children with chronic health conditions. Pediatrics 2001; 107:499-504
6. Marcin JP, Slonim AD, Pollack MM, et al: Long-stay patients in the pediatric intensive care unit. Crit Care Med 2001; 29:652-657
7. McCandless SE, Brunger JW, Cassidy SB: The burden of genetic disease on inpatient care in a children's hospital. Am J Hum Genet 2004; 74:121-127
8. Srivastava R, Stone BL, Murphy NA: Hospitalist care of the medically complex child. Pediatr Clin North Am 2005, 52: 1165-1187, x.
9. Graham RJ: Intensive care: A narrative. In: Medical Care for Children and Adults With Developmental Disabilities. Second Edition. Rubin IL, Crocker AC (Eds). Baltimore, Paul H. Brookes Publishing Co., 2006, p 733
10. Bradford R: Staff accuracy in predicting the concerns of parents of chronically ill children. Child Care Health Dev 1991; 17:39-47
11. Albrecht GL, Devlieger PJ: The disability paradox: High quality of life against all odds. Soc Sci Med 1999; 48:977-988
12. Rothwell PM, McDowell Z, Wong CK, et al: Doctors and patients don't agree: Cross sectional study of patients' and doctors' perceptions and assessments of disability in multiple sclerosis. BMJ 1997; 314:1580-1583
13. Johnson PA, Nelson GL, Brunnquell DJ: Parent and nurse perceptions of parent stressors in the pediatric intensive care unit. Child Health Care 1988; 17:98-105
14. MacLurg K, Reilly P, Hawkins S, et al: A primary care-based needs assessment of people with multiple sclerosis. Br J Gen Pract 2005; 55:378-383
15. Siperstein GN, Wolraich ML, Reed D, et al: Medical decisions and prognostications of pediatricians for infants with meningomyelocele. J Pediatr 1988; 113:835-840
16. Wolraich ML, Siperstein GN, Reed D: Doctors' decisions and prognostications for infants with Down syndrome. Develop Med Child Neurol 1991; 33:336-342
17. Affleck GG: Physicians' attitudes toward discretionary medical treatment of Down's syndrome infants. Ment Retard 1980; 18:79-81
18. Todres ID, Guillemin J, Catlin EA, et al: Moral and ethical dilemmas in critically ill newborns: A 20-year follow-up survey of Massachusetts pediatricians. J Perinatal 2000; 20:6-12
19. Streiner DL, Saigal S, Burrows E, et al: Attitudes of parents and health care professionals toward active treatment of extremely premature infants. Pediatrics 2001; 108: 152-157
20. Jacono J, Hicks G, Antonioni C, et al: Comparison of perceived needs of family members between registered nurses and family members of critically ill patients in intensive care and neonatal intensive care units. Heart Lung 1990; 19:72-78
21. Cott CA: Client-centered rehabilitation: Client perspectives. Disabil Rehabil 2004; 26: 1411-1422
22. Mellick D, Gerhart KA, Whiteneck GG: Understanding outcomes based on the post-acute hospitalization pathways followed by persons with traumatic brain injury. Brain Inj 2003; 17:55-71
23. Silver EJ, Westbrook LE, Stein RE: Relationship of parental psychological distress to consequences of chronic health conditions in children. J Pediatr Psychol 1998; 23:5-15
24. Raina P, O'Donnell M, Rosenbaum P, et al: The health and well-being of caregivers of children with cerebral palsy. Pediatrics 2005; 115x626-636
25. Wang KW, Barnard A: Technology-dependent children and their families: A review. J Adv Nurs 2004; 45:36-46
26. King G, King S, Rosenbaum P, et al: Family-centered caregiving and well-being of parents of children with disabilities: Linking process with outcome. J Pediatr Psychol 1999; 24:41-53
27. Pediatrics AAo: Family-centered care and the pediatrician's role. Pediatrics 2003; 112(3 Pt l):691-697
28. Coyne IT: Parental participation in care: A critical review of the literature. J Adv Nurs 1995; 21:716-722
29. Cuttini M, Rebagliato M, Bortoli P, et al: Parental visiting, communication, and participation in ethical decisions: A comparison of neonatal unit policies in Europe. Arch Dis Child Fetal Neonatal Ed 1999; 81:F84-F91
30. King GA, Rosenbaum PL, King SM: Evaluating family-centred service using a measure of parents' perceptions. Child Care Health Dev 1997; 23:47-62
31. Board R, Ryan-Wenger N: Long-term effects of pediatric intensive care unit hospitalization on families with young children. Heart Lung 2002; 31:53-66
32. Board R, Ryan-Wenger N: Stressors and stress symptoms of mothers with children in the PICU. J Pediatr Nurs 2003; 18:195-202
33. Board R: Father stress during a child's critical care hospitalization. J Pediatr Health Care 2004; 18:244-249
34. Miles MS, Carter MC, Spicher C, et al: Maternal and paternal stress reactions when a child is hospitalized in a pediatric intensive care unit. Issues Compr Pediatr Nurs 1984; 7:333-342
35. Ballufn A, Kassam-Adams N, Kazak A, et al: Traumatic stress in parents of children admitted to the pediatric intensive care unit. Pediatr Crit Care Med 2004; 5:547-553
36. Sandelowski M: Whatever happened to qualitative description? Res Nurs Health 2000; 23:334-340
37. Crocker AC: Medical Care for Children and Adults With Developmental Disabilities. Second Edition. Baltimore, Paul H. Brookes Publishing Co., Inc., 2006
38. McPherson M, Arango P, Fox H, et al: A new definition of children with special health care needs. Pediatrics 1998; 102(1 Pt 1):137-140
39. Huberrman MA, Miles MB: Data management and analysis methods. In: Handbook of Qualitative Research. Denzin NK, Lincoln YS (Eds). Thousand Oaks, Sage Publications, 1994, pp 428-444
40. Sia CJ, Antonelli R, Gupta VB, et al: The medical home. Pediatrics 2002; 110(1 Pt 1): 184-186
41. Anonymous: Care coordination in the medical home: Integrating health and related systems of care for children with special health care needs. Pediatrics 2005; 116:1238-1244
42. Kirk S: Families' experiences of caring at home for a technology-dependent child: A review of the literature. Child Care Health Dev 1998; 24:101-114
43. Graham RJ, Robinson WM: Integrating palliative care into chronic care for children with severe neurodevelopmental disabilities. J Dev Behav Pediatr 2005; 26:361-365
44. Youngblut JM, Shiao SY: Characteristics of a child's critical illness and parents' reactions: Preliminary report of a pilot study. Am J Crit Care 1992; 1:80-84
45. 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
46. Heyland DK, Cook DJ, Rocker GM, et al: Decision-making in the ICU: perspectives of the substitute decision-maker. Intensive Care Med 2003; 29:75-82
47. Safran DG, Miller W, Beckman H: Organizational dimensions of relationship-centered care. Theory, evidence, and practice. J Gen Intern Med 2006; 21(Suppl 1):S9-S15
48. Berg L, Skott C, Danielson E: Caring relationship in a context: Fieldwork in a medical ward. Int J Nurs Pract 2007; 13:100-106
49. Mok E, Chiu PC: Nurse-patient relationships in palliative care. J Adv Nurs 2004; 48: 475-483
50. Szasz TS, Hollender MH: A contribution to the philosophy of medicine: The basic models of the doctor-patient relationship. AMA 1956; 97:585-592
51. Curley MA: Effects of the nursing mutual participation model of care on parental stress in the pediatric intensive care unit. Heart Lung 1988; 17(6 Pt l):682-688
52. Curley MA: Mutuality - An expression of nursing presence. J Pediatr Nurs 1997; 12: 208-213
53. Curley MA, Wallace J: Effects of the nursing mutual participation model of care on parental stress in the pediatric intensive care unit - A replication. J Pediatr Nurs 1992; 7:377-385
54. Guest G, Bunce A, Johnson L: How many interviews are enough? An experiment with data saturation and variability. Field Methods 2006; 18:59-82