Hostname: page-component-586b7cd67f-rdxmf Total loading time: 0 Render date: 2024-11-24T03:33:00.389Z Has data issue: false hasContentIssue false
  • English
  • Français

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

Published online by Cambridge University Press:  27 June 2013

Simone J. Hearps ,
Maria C. McCarthy ,
Frank Muscara ,
Stephen J. C. Hearps ,
Kylie Burke ,
Bryn Jones  and
Vicki A. Anderson
Simone J. Hearps
Affiliation:
Critical Care and Neurosciences, Murdoch Children's Research Institute, Melbourne, Australia
Maria C. McCarthy
Affiliation:
Critical Care and Neurosciences, Murdoch Children's Research Institute, Melbourne, Australia Children's Cancer Centre, Royal Children's Hospital, Melbourne, Australia Department of Paediatrics, University of Melbourne, Melbourne, Australia
Frank Muscara*
Affiliation:
Critical Care and Neurosciences, Murdoch Children's Research Institute, Melbourne, Australia Department of Paediatrics, University of Melbourne, Melbourne, Australia Psychology Service, Royal Children's Hospital, Melbourne, Australia
Stephen J. C. Hearps
Affiliation:
Critical Care and Neurosciences, Murdoch Children's Research Institute, Melbourne, Australia
Kylie Burke
Affiliation:
The Parenting Research Centre, Melbourne, Australia
Bryn Jones
Affiliation:
Critical Care and Neurosciences, Murdoch Children's Research Institute, Melbourne, Australia Department of Paediatrics, University of Melbourne, Melbourne, Australia Department of Cardiology, Royal Children's Hospital, Melbourne, Australia
Vicki A. Anderson
Affiliation:
Critical Care and Neurosciences, Murdoch Children's Research Institute, Melbourne, Australia Department of Paediatrics, University of Melbourne, Melbourne, Australia Psychology Service, Royal Children's Hospital, Melbourne, Australia
*
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: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

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.

Keywords

Psychosocial riskcongenital heart diseasechildacute stress.
Type
Original Articles
Information
Cardiology in the Young , Volume 24 , Issue 4 , August 2014 , pp. 632 - 639
Copyright
Copyright © Cambridge University Press 2013 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

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: 619–624.Google Scholar
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: 1649–1653.CrossRefGoogle ScholarPubMed
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: 19–25.Google Scholar
4. Aite, L, Zaccara, A, Mirante, N, et al. Antenatal diagnosis of congenital anomaly: a really traumatic experience? J Perinatol 2011; 31: 760–763.Google Scholar
5. Lissauer, T, Clayden, G. Illustrated Textbook of Paediatrics, 2nd edn. Edinburgh, Mosby, 2001.Google Scholar
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: 50–60.Google Scholar
7. Carey, LK, Nicholson, BC, Fox, R. Maternal factors related to parenting young children with congenital heart disease. J Pediatr Nurs 2002; 17: 174–183.Google Scholar
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: 193–208.Google Scholar
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: 785–792.Google Scholar
10. Ingerski, LM, Modi, AC, Hood, KK, et al. Health-related quality of life across pediatric chronic conditions. J Pediatr 2010; 156: 639–644.CrossRefGoogle ScholarPubMed
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: 547–553.Google Scholar
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: 255–262.CrossRefGoogle ScholarPubMed
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: 961–968.CrossRefGoogle ScholarPubMed
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: 390–400.Google Scholar
15. Uzark, K, Crowley, D. Family stress after pediatric heart transplantation. Prog Cardiovasc Nurs 1989; 41: 23–27.Google Scholar
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: 190–198.Google Scholar
17. Ludlow, LH, Levy, S. Personal space as a function of infant illness: an application of multidimensional scaling. J Pediatr Psychol 1984; 9: 331–347.Google Scholar
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: 201–205.Google Scholar
19. Kazak, AE. Pediatric Psychosocial Preventative Health Model (PPPHM): research, practice and collaboration in pediatric family systems medicine. Fam Syst Health 2006; 24: 381–395.Google Scholar
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: 1011–1017.Google Scholar
21. Alderfer, MA, Mougianis, I, Barakat, LP, et al. Family psychosocial risk, distress, and service utilization in pediatric cancer. Cancer 2009; 115: 4339–4349.Google Scholar
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: 3220–3225.Google Scholar
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: 289–294.Google Scholar
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: 50–62.Google Scholar
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: 78–86.CrossRefGoogle ScholarPubMed
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: 92–98.Google Scholar
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: 1031–1040.Google Scholar
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: 142–150.Google Scholar
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: 403–448.Google Scholar
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: 1–16.Google Scholar
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: 439–448.CrossRefGoogle ScholarPubMed
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: 67–74.CrossRefGoogle ScholarPubMed
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: 687–692.Google Scholar
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: 31–65.Google Scholar
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: 237–258.Google Scholar
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: 50–56.Google Scholar
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: 14–21.Google Scholar
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: 289–292.Google Scholar
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: 1074–1079.Google Scholar
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: 309–318.Google Scholar
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: 412–426.Google Scholar
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: 617–630.Google Scholar