title: Health information management and perceptions of the quality of care for children with tracheotomy: a qualitative study.
abstract: BACKGROUND
  Children with tracheotomy receive health care from an array of providers within various hospital and community health system sectors. Previous studies have highlighted substandard health information exchange between families and these sectors. The aim of this study was to investigate the perceptions and experiences of parents and providers with regard to health information management, care plan development and coordination for children with tracheotomy, and strategies to improve health information management for these children.
  
  
  METHODS
  Individual and group interviews were performed with eight parents and fifteen healthcare (primary and specialty care, nursing, therapist, equipment) providers of children with tracheotomy. The primary tracheotomy-associated diagnoses for the children were neuromuscular impairment (n = 3), airway anomaly (n = 2) and chronic lung disease (n = 3). Two independent reviewers conducted deep reading and line-by-line coding of all transcribed interviews to discover themes associated with the objectives.
  
  
  RESULTS
  Children with tracheotomy in this study had healthcare providers with poorly defined roles and responsibilities who did not actively communicate with one another. Providers were often unsure where to find documentation relating to a child's tracheotomy equipment settings and home nursing orders, and perceived that these situations contributed to medical errors and delayed equipment needs. Parents created a home record that was shared with multiple providers to track the care that their children received but many considered this a burden better suited to providers. Providers benefited from the parent records, but questioned their accuracy regarding critical tracheotomy care plan information such as ventilator settings. Parents and providers endorsed potential improvement in this environment such as a comprehensive internet-based health record that could be shared among parents and providers, and between various clinical sites.
  
  
  CONCLUSIONS
  Participants described disorganized tracheotomy care and health information mismanagement that could help guide future investigations into the impact of improved health information systems for children with tracheotomy. Strategies with the potential to improve tracheotomy care delivery could include defined roles and responsibilities for tracheotomy providers, and improved organization and parent support for maintenance of home-based tracheotomy records with web-based software applications, personal health record platforms and health record data authentication techniques.
authors: Division of General Pediatrics, Children's Hospital, Boston, MA, USA. jay.berry@childrens.harvard.edu
authors: Jay G
authors: JG
authors: Berry
authors: Donald A
authors: DA
authors: Goldmann
authors: Kenneth D
authors: KD
authors: Mandl
authors: Heather
authors: H
authors: Putney
authors: David
authors: D
authors: Helm
authors: Jane
authors: J
authors: O'Brien
authors: Richard
authors: R
authors: Antonelli
authors: Robin M
authors: RM
authors: Weinick
references: Child Care Health Dev. 1978 Jan-Feb;4(1):9-19
references: 630660
references: Jt Comm J Qual Improv. 2001 May;27(5):255-64
references: 11367773
references: Pediatrics. 2003 Dec;112(6 Pt 1):1314-20
references: 14654603
references: Pediatrics. 2001 Jun;107(6):1283-90
references: 11389244
references: Pediatrics. 1994 Sep;94(3):284-90
references: 8065851
references: Eff Clin Pract. 1998 Aug-Sep;1(1):2-4
references: 10345255
references: Trials. 2010 Apr 30;11:49
references: 20433715
references: Stud Health Technol Inform. 2007;129(Pt 2):997-1001
references: 17911865
references: BMC Health Serv Res. 2009 Dec 21;9:242
references: 20025770
references: J Fam Nurs. 2005 May;11(2):162-82
references: 16287824
references: Aust Health Rev. 2005 May;29(2):211-7
references: 15865572
references: N Engl J Med. 2008 Apr 17;358(16):1732-7
references: 18420506
references: Arch Otolaryngol Head Neck Surg. 2003 May;129(5):523-9
references: 12759264
references: Arch Pediatr Adolesc Med. 2007 Jan;161(1):38-43
references: 17199065
references: Pediatrics. 2004 May;113(5 Suppl):1529-37
references: 15121922
references: J Adv Nurs. 1993 Jun;18(6):918-25
references: 8320386
references: Am J Otolaryngol. 1996 Jan-Feb;17(1):50-3
references: 8801816
references: Pediatrics. 2004 May;113(5 Suppl):1517-21
references: 15121920
references: Pediatrics. 2006 Jan;117(1):e48-60
references: 16396848
references: Pediatrics. 2009 Jul;124(1):403-9
references: 19564327
references: Pediatrics. 2004 May;113(5 Suppl):1485-92
references: 15121916
references: Aust N Z J Obstet Gynaecol. 2005 Dec;45(6):509-13
references: 16401218
references: J Med Internet Res. 2010 Aug 30;12(3):e36
references: 20805091
references: Arch Intern Med. 2006 Sep 25;166(17):1822-8
references: 17000937
references: J Am Med Inform Assoc. 2008 Jan-Feb;15(1):1-7
references: 17947615
references: Ann Intern Med. 2003 Aug 19;139(4):301-2
references: 12965988
references: J Otolaryngol. 1988 Apr;17(2):121-4
references: 3385864
references: Pediatrics. 2005 Nov;116(5):1238-44
references: 16264016
references: Int J Med Inform. 2010 Feb;79(2):71-80
references: 20071219
references: Pediatrics. 2004 Nov;114(5):e612-25
references: 15520092