title: Social impact on families of children with complex congenital heart disease.
abstract: OBJECTIVE
  The care of children with complex congenital heart disease creates emo.tional and financial hardships for their families. We evaluated the social impact on families of patients with complex congenital heart disease (CHD) who underwent single ventricle repair.
  
  
  METHODS
  Cross-sectional survey conducted at the pediatric cardiology outpatient department at Prince Sultan Cardiac Center-Qassim (PSCC-Q).
  
  
  METHODS
  All patients diagnosed and treated for complex CHD of single ventricle patho.physiology and seen in the pediatric cardiology at PSCC-Q were eligible for the study. Families of these patients completed a questionnaire conducted by one interviewer. The Impact on Family Scale (IFS) questionnaire of Stein and Riessman was instituted. Patients were divided into two groups according to the cardiac diagnosis and the requirement for medical or surgical management. The first group included patients with CHD who do not need any medical or surgical intervention, .e.g. tiny VSD or small ASD. The second group included patients with complex CHD with single ventricle pathophysiology who underwent Glenn and/or Fontan procedures. The mean impact on family scores was compared among the different groups by two sample t test analysis.
  
  
  RESULTS
  Families of 41 children with CHD were interrogated during the study period from September 2011 to February 2012. Patients were divided into two groups. Group one (20 patients, 49%) with simple CHD and group two (21 patients, 51%) with complex CHD who are managed in the univentricular tract. Families of chil.dren who underwent single ventricle repair had significantly higher IFS (mean and standard deviation of 62 [7]) than families with minor heart disease (mean of 51 [4]) (P=.005).
  
  
  CONCLUSIONS
  Families of patients who underwent single ventricle repair have significant social impact be.cause of their child illness. A supporting public group should be initiated and encouraged.
authors.affiliation: Pediatric Cardiology, Prince Sultan Cardiac Center Qassim, Buriadah, Qassim 896, Saudi Arabia.
authors.forename: Sulaiman
authors.initials: S
authors.lastname: Almesned
authors.forename: Ali
authors.initials: A
authors.lastname: Al-Akhfash
authors.forename: Abdulrahman Al
authors.initials: AA
authors.lastname: Mesned
mesh_terms: D016022:Case-Control Studies; D002648:Child; D002675:Child, Preschool; D002908:Chronic Disease; D017281:Cost of Illness; D003430:Cross-Sectional Studies; D005190:Family / Q000523:psychology*; D005260:Female; D018729:Fontan Procedure; D006306:Health Surveys; D006330:Heart Defects, Congenital / Q000191:economics / Q000523:psychology* / Q000601:surgery; D006801:Humans; D007223:Infant; D008297:Male; D012529:Saudi Arabia; D012944:Social Support; D012959:Socioeconomic Factors; D011795:Surveys and Questionnaires
references.citation: J Dev Behav Pediatr. 2003 Feb;24(1):9-16
references.pmid: 12584480
references.citation: J Pediatr Hematol Oncol. 2008 Oct;30(10):738-43
references.pmid: 19011470
references.citation: Cardiol Young. 2005 Apr;15(2):133-40
references.pmid: 15845155
references.citation: Int J Dermatol. 2010 Sep;49(9):1063-7
references.pmid: 20883272
references.citation: Saudi Med J. 2009 Mar;30(3):340-5
references.pmid: 19271060
references.citation: Am J Public Health. 1992 Mar;82(3):364-71
references.pmid: 1536351
references.citation: Congenit Heart Dis. 2012 May-Jun;7(3):277-82
references.pmid: 22212301
references.citation: Soc Sci Med. 2002 Nov;55(10):1835-47
references.pmid: 12383468
references.citation: J Dev Behav Pediatr. 2006 Feb;27(1):11-7
references.pmid: 16511363
references.citation: Am J Occup Ther. 1994 Mar;48(3):211-8
references.pmid: 8178914
references.citation: J Pediatr Psychol. 2000 Jul-Aug;25(5):323-9
references.pmid: 10880062
references.citation: Arch Dis Child. 1997 Feb;76(2):159-62
references.pmid: 9068310
references.citation: Med Care. 1980 Apr;18(4):465-72
references.pmid: 7401703
references.citation: Eur Heart J. 2009 Dec;30(23):2915-20
references.pmid: 19692392
references.citation: Chest. 2005 Dec;128(6):3925-36
references.pmid: 16354865
references.citation: Am J Orthopsychiatry. 1994 Jul;64(3):396-403
references.pmid: 7977663
references.citation: Health Qual Life Outcomes. 2009 Jan 28;7:4
references.pmid: 19175918
references.citation: JAMA. 2007 Jun 27;297(24):2755-9
references.pmid: 17595277