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Psychosocial risk in families of infants undergoing surgery for a serious congenital heart disease

  • Simone J. Hearps (a1), Maria C. McCarthy (a1) (a2) (a3), Frank Muscara (a1) (a3) (a4), Stephen J. C. Hearps (a1), Kylie Burke (a5), Bryn Jones (a1) (a3) (a6) and Vicki A. Anderson (a1) (a3) (a4)...


Objective: The aim of this study was to explore the acute psychosocial risk in families with infants undergoing surgery for a congenital heart disease and, secondarily, to explore the psychosocial impact of antenatal versus post-natal diagnoses. Method: The study sample comprised 39 caregivers (28 mothers) of 29 children diagnosed with a congenital heart disease and requiring surgery within the first 4 weeks of life. Psychosocial risk was measured using the Psychosocial Assessment Tool, which was adapted to include four novel items examining infant risk factors, namely, sleeping, feeding, crying, and bonding difficulties. Parents’ psychosocial risk was measured within 4 weeks after their child's surgery and stratified into a three-tiered framework: Universal, Targeted, and Clinical risk. Results: Of the total sample, 61.5% of parents were classified as Universal, that is, at lowest risk; 35.9% as Targeted, and 2.6% as Clinical. The within-family parent total Psychosocial Assessment Tool score correlations were non-significant, and there were no differences between families of infants who received post-natal versus antenatal diagnosis or single ventricle versus biventricular repair. Linear regression found that a higher parent education significantly predicted a lower total Psychosocial Assessment Tool score. Conclusions: Findings indicate that, although the majority of parents adapt to the acute stress of surgery for a serious cardiac illness in their infant, the remaining 38.5% report an increased psychosocial risk associated with higher rates of emotional distress, which may impact on the parental quality of life and capacity for optimal parenting. The distribution of psychosocial risk in parents of children undergoing surgery for a congenital heart disease is consistent with that described for parents of children with other serious paediatric diagnoses.


Corresponding author

Correspondence to: F. Muscara, 4 West, Murdoch Children's Research Institute, Flemington Road, Parkville Victoria 3052, Australia. Tel: +61 3 9936 6653; Fax: +61 3 9345 5544; E-mail:


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1. Chew, C, Halliday, JL, Riley, MM, Penny, DJ. Population-based study of antenatal detection of congenital heart disease by ultrasound examination. Ultrasound Obstet Gynecol 2007; 29: 619624.
2. Kumar, RK, Newburger, JW, Gauvreau, K, Kamenir, SA, Hornberger, LK. Comparison of outcome when hypoplastic left heart syndrome and transposition of the great arteries are diagnosed prenatally versus when diagnosis of these two conditions is made only postnatally. Am J Cardiol 1999; 83: 16491653.
3. Wong, S, Chan, F, Cincotta, R, Lee-Tannock, A, Ward, C. Factors influencing the prenatal detection of structural congenital heart disease. Ultrasound Obstet Gynecol 2003; 21: 1925.
4. Aite, L, Zaccara, A, Mirante, N, et al. Antenatal diagnosis of congenital anomaly: a really traumatic experience? J Perinatol 2011; 31: 760763.
5. Lissauer, T, Clayden, G. Illustrated Textbook of Paediatrics, 2nd edn. Edinburgh, Mosby, 2001.
6. van der Bom, T, Zomer, C, Zwinderman, AH, Meijboom, FJ, Bouma, BJ, Mulder, BJM. The changing epidemiology of congenital heart disease. Nat Rev Cardiol 2011; 8: 5060.
7. Carey, LK, Nicholson, BC, Fox, R. Maternal factors related to parenting young children with congenital heart disease. J Pediatr Nurs 2002; 17: 174183.
8. Lawoko, S, Soares, JF. Distress and hopelessness among parents of children with congenital heart disease, parents of children with other diseases, and parents of healthy children. J Psychosom Res 2002; 52: 193208.
9. Hysing, M, Elgen, I, Gillberg, C, Lie, SA, Lundervold, AJ. Chronic physical illness and mental health in children. Results from a large-scale population study. J Child Psychol Psychiatry 2007; 48: 785792.
10. Ingerski, LM, Modi, AC, Hood, KK, et al. Health-related quality of life across pediatric chronic conditions. J Pediatr 2010; 156: 639644.
11. Balluffi, A, Kassam-Adams, N, Kazak, A, Tucker, M, Dominguez, T, Helfaer, M. Traumatic stress in parents of children admitted to the pediatric intensive care unit. Pediatr Crit Care Med 2004; 5: 547553.
12. Brosig, CL, Mussatto, KA, Kuhn, EM, Tweddell, JS. Psychosocial outcomes for preschool children and families after surgery for complex congenital heart disease. Pediatr Cardiol 2007; 28: 255262.
13. Franck, LS, Mcquillan, A, Wray, J, Grocott, MPW, Goldman, A. Parent stress levels during children's hospital recovery after congenital heart surgery. Pediatr Cardiol 2010; 31: 961968.
14. Doherty, N, McCusker, CG, Molloy, B, et al. Predictors of psychological functioning in mothers and fathers of infants born with severe congenital heart disease. J Reprod Infant Psychol 2009; 27: 390400.
15. Uzark, K, Crowley, D. Family stress after pediatric heart transplantation. Prog Cardiovasc Nurs 1989; 41: 2327.
16. Take, YR, McCubbin, M. Family stress, perceived social support and coping following the diagnosis of a child's congenital heart disease. J Adv Nurs 2002; 39: 190198.
17. Ludlow, LH, Levy, S. Personal space as a function of infant illness: an application of multidimensional scaling. J Pediatr Psychol 1984; 9: 331347.
18. Rona, RJ, Smeeton, NC, Beech, R, Barnett, A, Sharland, G. Anxiety and depression in mothers related to severe malformation of the heart of the child and foetus. Acta Paediatr 1998; 87: 201205.
19. Kazak, AE. Pediatric Psychosocial Preventative Health Model (PPPHM): research, practice and collaboration in pediatric family systems medicine. Fam Syst Health 2006; 24: 381395.
20. Lindstrom, CJ, Aman, J, Norberg, AL. Parental burnout in relation to sociodemographic, psychosocial and personality factors as well as disease duration and glycaemic control in children with Type 1 diabetes mellitus. Acta Paediatr 2011; 100: 10111017.
21. Alderfer, MA, Mougianis, I, Barakat, LP, et al. Family psychosocial risk, distress, and service utilization in pediatric cancer. Cancer 2009; 115: 43394349.
22. Kazak, AE, Cant, MC, Jensen, MM, et al. Identifying psychosocial risk indicative of subsequent resource use in families of newly diagnosed pediatric oncology patients. J Clin Oncol 2003; 21: 32203225.
23. Kazak, AE, Barakat, LP, Ditaranto, S, et al. Screening for psychosocial risk at pediatric cancer diagnosis: the Psychosocial Assessment Tool. J Pediatr Hematol Oncol 2011; 33: 289294.
24. Pai, ALH, Patiño-Fernández, AM, McSherry, M, et al. The Psychosocial Assessment Tool (PAT 2.0): psychometric properties of a screener for psychosocial distress in families of children newly diagnosed with cancer. J Pediatr Psychol 2008; 33: 5062.
25. McCarthy, MC, Clarke, NE, Vance, A, Ashley, DM, Heath, JA, Anderson, VA. Measuring psychosocial risk in families caring for a child with cancer: the Psychosocial Assessment Tool (PAT2.0). Pediatr Blood Cancer 2009; 53: 7886.
26. Pai, ALH, Tackett, A, Ittenbach, RF, Goebel, J. Psychosocial Assessment Tool 2.0_General: validity of a psychosocial risk screener in a pediatric kidney transplant sample. Pediatr Transplant 2012; 16: 9298.
27. Karlson, CW, Leist-Haynes, S, Smith, M, Faith, MA, Elkin, TD, Megason, G. Examination of risk and resiliency in a pediatric sickle cell disease population using the Psychosocial Assessment Tool 2.0. J Pediatr Psychol 2012; 37: 10311040.
28. Newgard, CD, Fleischman, R, Choo, E, Ma, OJ, Hedges, JR, McConnell, KJ. Validation of length of hospital stay as a surrogate measure for injury severity and resource use among injury survivors. Acad Emerg Med 2010; 17: 142150.
29. Marmot, MG, Fuhrer, R, Ettner, SL, Marks, NF, Bumpass, LL, Ryff, CD. Contribution of psychosocial factors to socioeconomic differences in health. Milbank Q 1998; 76: 403448.
30. Grzywacz, JG, Almeida, DM, Neupert, SD, Ettner, SL. Socioeconomic status and health: a micro-level analysis of exposure and vulnerability to daily stressors. J Health Soc Behav 2004; 45: 116.
31. Heath, JA, Lintuuran, RM, Rigguto, G, Tokatlian, N, McCarthy, M. Childhood cancer: its impact and financial costs for Australian families. Pediatr Hematol Oncol 2006; 23: 439448.
32. Fonseca, A, Nazare, B, Canavarro, MC. Parental psychological distress and quality of life after a prenatal or postnatal diagnosis of congenital anomaly: a controlled comparison study with parents of healthy infants. Disabil Health J 2012; 5: 6774.
33. Brosig, CL, Whitstone, BN, Frommelt, MA, Leuthner, SR. Psychological distress in parents of children with severe congenital heart disease: the impact of prenatal versus postnatal diagnosis. J Perinatol 2007; 27: 687692.
34. Berant, E, Mikulincer, M, Shaver, PR. Mothers’ attachment style, their mental health, and their children's emotional vulnerabilities: a 7-year study of children with congenital heart disease. J Pers 2008; 76: 3165.
35. Van den Bergh, BR, Mulder, EJ, Mennes, M, Glover, V. Antenatal maternal anxiety and stress and the neurobehavioural development of the fetus and child: links and possible mechanisms. Neurosci Biobehav Rev 2005; 29: 237258.
36. Vanderbilt, D, Bushley, T, Young, R, Frank, DA. Acute posttraumatic stress symptoms among urban mothers with newborns in the neonatal intensive care unit: a preliminary study. J Dev Behav Pediatr 2009; 30: 5056.
37. Landolt, MA, Buehlmann, C, Maag, T, Schiestl, C. Brief report: quality of life is impaired in pediatric burn survivors with posttraumatic stress disorder. J Pediatr Psychol 2009; 34: 1421.
38. Patiño-Fernández, AM, Pai, AL, Alderfer, MA, Hwang, WT, Reilly, A, Kazak, A. Acute stress in parents of children newly diagnosed with cancer. Pediatr Blood Cancer 2008; 50: 289292.
39. Winston, FK, Baxt, C, Kassam-Adams, NL, Elliott, MR, Kallan, MJ. Acute traumatic stress symptoms in child occupants and their parent drivers after crash involvement. Arch Pediatr Adolesc Med 2005; 159: 10741079.
40. Nugent, NR, Ostrowski, S, Christopher, NC, Delahanty, DL. Parental posttraumatic stress symptoms as a moderator of child's acute biological response and subsequent posttraumatic stress symptoms in pediatric injury patients. J Pediatr Psychol 2007; 32: 309318.
41. Yeates, KO, Swift, E, Taylor, G, et al. Short- and long-term social outcomes following pediatric traumatic brain injury. J Int Neuropsychol Soc 2004; 10: 412426.
42. Yeates, KO, Taylor, G, Drotar, D, et al. Preinjury family environment as a determinant of recovery from traumatic brain injuries in school-age children. J Int Neuropsychol Soc 1997; 3: 617630.



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