Hostname: page-component-586b7cd67f-rdxmf Total loading time: 0 Render date: 2024-11-23T07:13:32.289Z Has data issue: false hasContentIssue false
  • English
  • Français

Parenting a child at home with hypoplastic left heart syndrome: experiences of commitment, of stress, and of love

Published online by Cambridge University Press:  06 June 2017

Annie M. Cantwell-Bartl  and
James Tibballs Open the ORCID record for James Tibballs [Opens in a new window]
Annie M. Cantwell-Bartl*
Affiliation:
Private Practice, Melbourne, Victoria, Australia
James Tibballs
Affiliation:
Private Practice, Melbourne, Victoria, Australia
*
Correspondence to: A. M. Cantwell-Bartl, 24 Market St, Kensington, Melbourne, Vic. 3031, Australia. Tel: +61 4 1987 5570; E-mail: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective

To evaluate the experiences of parenting a child with hypoplastic left heart syndrome after the child has been discharged home from hospital.

Design

A study of the parents’ experiences using face-to-face interviews and psychometric measures with parents whose child had survived stage surgery.

Setting

Parents were interviewed within the home environment or within the hospital if that was their choice.

Subjects

A total of 29 parents (16 mothers and 13 fathers) of surviving children.

Intervention

A semi-structured face-to-face interview plus psychometric tests (parent demographics, Maslach Burnout Inventory, Impact on Family Scale, and the Psychological Check List – Civilian).

Measurements and main results

The parents’ experience in supporting a child with hypoplastic left heart syndrome is one of stress, of commitment, and of love. Although parents experienced joy in their child, they were also subjected to anxiety with four parents test positive to post-traumatic stress disorder and hypervigilance while monitoring their child’s condition. Parents lived with many difficulties, and demands.

Keywords

Hypoplastic left heart syndromeparentsstressgriefadaptation
Type
Original Articles
Information
Cardiology in the Young , Volume 27 , Issue 7 , September 2017 , pp. 1341 - 1348
Check for updates
Copyright
© Cambridge University Press 2017 

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. Feinstein, JA, Benson, DW, Dubin, AM, et al. Hypoplastic left heart syndrome: current considerations and expectations. J Am Coll Cardiol 2012; 59: S1–S42.Google Scholar
2. Namachivayam, S, d’Udekem, Y, Millar, J, Cheung, M, Butt, W. Survival status and functional outcome of children who required prolonged intensive care after cardiac surgery. J Thorac Cardiovasc Surg 2016; 152: 1104–1112.e3.Google Scholar
3. Hangge, PT, Cnota, J, Woo, JG, et al. Microcephaly is associated with early adverse neurologic outcomes in hypoplastic left heart syndrome. Pediatr Res 2013; 74: 61–67.Google Scholar
4. Furck, A, Uebing, A, Hansen, J, et al. Outcome of the Norwood operation in patients with hypoplastic left heart syndrome: a 12-year single-center survey. J Thorac Cardiovasc Surg 2010; 139: 359–365.Google Scholar
5. Bordacova, L, Docolomanska, D, Masura, J. Neuropsychological outcome in children with hypoplastic left heart syndrome. Bratisl Lek Listy 2007; 108: 203–206.Google Scholar
6. Brosig, C, Mussatto, KHG, Hoffmann, R, Dasgupta, M, Tweddell, J, Ghanayem, N. Neurodevelopmental outcomes for children with hypoplastic left heart syndrome at the age of 5 years. Pediatr Cardiol 2013; 34: 1597–1604.CrossRefGoogle ScholarPubMed
7. Gunn, JK, Beca, J, Hunt, RW, et al. Perioperative risk factors for impaired neurodevelopment after cardiac surgery in early infancy. Arch Dis Child 2016; 101: 1010–1016.Google Scholar
8. Newburger, J, Sleeper, L, Bellinger, D, et al. Early developmental outcome in children with hypoplastic left heart syndrome and related anomalies: the single ventricle reconstruction trial. Circulation 2012; 125: 2081–2091.Google Scholar
9. Re, J, Dean, S, Menahem, S. Infant cardiac surgery: mothers tell their story: a therapeutic experience. World J Pediatr Congenit Heart Surg 2013; 4: 278–285.Google Scholar
10. Hammonds, M. Linking early healthy attachment with long-term mental health. Nurs NZ 2012; 18: 12–14.Google Scholar
11. Lawoko, S, Soares, J. Social support among parents of children with congenital heart disease, parents of children with other diseases and parents of healthy children. Scand J Occup Ther 2003; 10: 177–187.Google Scholar
12. Menahem, S, Poulakisb, Z, Prior, M. Children subjected to cardiac surgery for congenital heart disease. Part 2 – parental emotional experiences. Interact Cardiovasc Thorac Surg 2008; 7: 605–608.CrossRefGoogle ScholarPubMed
13. Bruce, EJ, Schultz, CL. Nonfinite Loss and Grief. Paul H. Brookes, Baltimore, MD, 2001.Google Scholar
14. Harris, D, Winokuer, HR. Living losses: nonfinite loss, ambiguous loss, and chronic sorrow. In: Winokuer HR, Harris D, (eds) Principles and Practice of Grief Counselling. Springer, New York, 2016: 107–124.Google Scholar
15. Upham, M, Medoff-Cooper, B. What are the responses and needs of mothers of infants diagnosed with congenital heart disease? MCN Am J Matern Child Nurs 2005; 30: 24–29.Google Scholar
16. Landolt, MA, Ystrom, E, Stene-Larsen, K, Holmstrøm, H, Vollrath, ME. Exploring causal pathways of child behavior and maternal mental health in families with a child with congenital heart disease: a longitudinal study. Psychol Med 2014; 44: 3421–3433.Google Scholar
17. Cantwell-Bartl, AM, Tibballs, J. Psychosocial experiences of parents of infants with hypoplastic left heart syndrome in the PICU. Pediatr Crit Care Med 2013; 14: 869–875.Google Scholar
18. Australian Psychological Society. Post Traumatic Stress Disorder. Australian Psychological Society, Melbourne, Victoria, Australia, 2015.Google Scholar
19. Cantwell-Bartl, AM, Tibballs, J. Psychosocial responses of parents to their infant’s diagnosis of hypoplastic left heart syndrome. Cardiol Young 2015; 25: 1065–1073.Google Scholar
20. Rempel, GR, Ravindran, V, Rogers, LG, Magill-Evans, J. Parenting under pressure: a grounded theory of parenting young children with life-threatening congenital heart disease. J Adv Nurs 2013; 69: 619–630.Google Scholar
21. Meakins, L, Ray, L, Hegadoren, K, Rogers, LG, Rempel, GR. Parental vigilance in caring for their children with hypoplastic left heart syndrome. Pediatr Nurs 2015; 41: 31–41.Google Scholar
22. Lee, A, Rempel, G. Parenting children with hypoplastic left heart syndrome: finding a balance. J Spec Pediatr Nurs 2011; 16: 179–189.Google Scholar
23. Rempel, GR, Harrison, MA. Safeguarding precarious survival: parenting children who have life-threatening heart disease. Qual Health Res 2007; 17: 824–837.Google Scholar
24. Rempel, G, Harrison, M, Williamson, D. “Is treat your child normally” helpful advice for parents of survivors of treatment of hypoplastic left heart syndrome? Cardiol Young 2009; 19: 135–144.CrossRefGoogle ScholarPubMed
25. Rempel, G. Parenting a child with HLHS whose infant includes the Norwood surgical approach. Doctoral dissertation, University of Alberta, Edmonton, Canada, 2005.Google Scholar
26. Rempel, GR, Rogers, LG, Ravindran, V, Magill-Evans, J. Facets of parenting a child with hypoplastic left heart syndrome. Nurs Res Pract 2012; 2012: 714178.Google ScholarPubMed
27. Pelchat, D, Levert, MJ, Bourgeois-Guérin, V. How do mothers and fathers who have a child with a disability describe their adaptation/transformation process? J Child Health Care 2009; 13: 239–259.Google Scholar
28. First, M, Spitzer, R, Gibbon, M, Williams, J. Structured Clinical Interview for DSM-IV, Axis 1 Disorders-Clinical Version (SCID-CV). American Psychiatric Press, Washington, DC, 1997.Google Scholar
29. Maslach, C, Jackson, SE, Leiter, MP. Maslach Burnout Inventory, 3rd edn. Consulting Psychologists Press, Palo Alto, CA, 1996.Google Scholar
30. Stein, R, Riessman, C. The development of an impact-on-family scale: preliminary findings. Med Care 1980; XV111: 465–471.Google Scholar
31. Weathers, FW, Litz, BT, Herman, DS, Huska, JA, Keane, TM. The PTSD checklist (PCL): reliability, validity, and diagnostic utility. Paper presented at the 9th Annual Conference of the ISTSS, San Antonio, TX, 1993.Google Scholar
32. Bronner, MB, Peek, N, Knoester, H, Bos, AP, Last, BF, Grootenhuis, MA. Course and predictors of posttraumatic stress disorder in parents after pediatric intensive care treatment of their child. J Pediatr Psychol 2010; 35: 966–974.Google Scholar
33. Colville, G, Darkins, J, Hesketh, J, Bennett, V, Alcock, J, Noyes, J. The impact on parents of a child’s admission to intensive care: integration of qualitative findings from a cross-sectional study. Intensive Crit Care Nurs 2009; 25: 72–79.Google Scholar
34. Vandvik, I, Førde, R. Ethical issues in parental decision-making: an interview study of mothers of children with hypoplastic left heart syndrome. Acta Paediatr 2000; 89: 1129–1133.Google Scholar
35. Weintraut, NS. Treatment options for hypoplastic left heart syndrome: a mother’s perspective. Crit Care Nurse 1996; 16: 20–21.Google Scholar
36. Tedeschi, RG, Calhoun, LG. Posttraumatic growth: conceptual foundations and empirical evidence. Psycholo Inq 2004; 15: 1–18.CrossRefGoogle Scholar