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Supporting parenting during infant hospitalisation for CHD

  • Colette Gramszlo (a1), Allison Karpyn (a2), Jennifer Christofferson (a3), Linda G. McWhorter (a1), Abigail C. Demianczyk (a4), Stacey L. Lihn (a5), Jena Tanem (a6), Sinai Zyblewski (a7), Elizabeth Lucey Boyle (a7), Anne E. Kazak (a3) (a8) and Erica Sood (a1) (a3) (a8) (a9)...



To characterise the parenting priorities of mothers and fathers of infants hospitalised with CHD and generate recommendations to support parenting during infant hospitalisation.

Study design:

Through online crowdsourcing, an innovative research methodology to create an online community to serve as a research sample, 79 parents of young children with CHD responded to questions about parenting during hospitalisation via private social networking site. Responses were analysed using qualitative research methods.


Three broad themes were identified: (1) establishing a bond with my baby, (2) asserting the parental role, and (3) coping with fear and uncertainty. Parents value provider support in restoring normalcy to the parenting experience during infant hospitalisation.


Care teams can support parenting during infant hospitalisation by promoting parents’ roles as primary caretakers and decision-makers and attending to the emotional impact of infant hospitalisation on the family.


Corresponding author

Author for correspondence: Colette Gramszlo, PhD, Division of Behavioral Health, Alfred I. duPont Hospital for Children, 1801 Rockland Road, Wilmington, DE 19803, USA. Tel: +1 302-300-2908; Fax: +1 302-651-4543. E-mail:


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1. Ibiebele, I, Algert, CS, Bowen, JR, Roberts, CL. Pediatric admissions that include intensive care: a population-based study. BMC Health Serv Res 2018; 18: 264. doi: 10.1186/s12913-018-3041-x
2. Lisanti, AJ, Golfenshtein, N, Medoff-Cooper, B. The pediatric cardiac intensive care unit parental stress model: refinement using directed content analysis. Adv Nurs Sci 2017; 40: 319336. doi: 10.1097/ANS.0000000000000184
3. Lisanti, AJ, Vittner, D, Medoff-Cooper, B, Fogel, J, Wernovsky, G, Butler, S. Individualized family-centered developmental care: an essential model to address the unique needs of infants with congenital heart disease. J Cardiovasc Nurs 2019; 34: 8593. doi: 10.1097/JCN.0000000000000546
4. Perry, RE, Blair, C, Sullivan, RM. Neurobiology of infant attachment: attachment despite adversity and parental programming of emotionality. Curr Opin Psychol 2017; 17: 16. doi: 10.1016/j.copsyc.2017.04.022
5. Lisanti, AJ, Allen, LR, Kelly, L, Medoff-Cooper, B. Maternal stress and anxiety in the pediatric cardiac intensive care unit. Am J Crit Care 2017; 26: 118125. doi: 10.4037/ajcc2017266
6. Sood, E, Karpyn, A, Demianczyk, AC, et al. Mothers and fathers experience stress of congenital heart disease differently: recommendations for pediatric critical care. Pediatr Crit Care Med 2018; 19: 626634. doi: 10.1097/PCC.0000000000001528
7. Jordan, B, Franich-Ray, C, Albert, N, et al. Early mother-infant relationships after cardiac surgery in infancy. Arch Dis Child 2014; 99: 641645. doi: 10.1136/archdischild-2012-303488
8. Laing, S, McMahon, C, Ungerer, J, Taylor, A, Badawi, N, Spence, K. Mother–child interaction and child developmental capacities in toddlers with major birth defects requiring newborn surgery. Early Hum Dev 2010; 86: 793800. doi: 10.1016/j.earlhumdev.2010.08.025
9. Woodward, LJ, Bora, S, Clark, CAC, et al. Very preterm birth: maternal experiences of the neonatal intensive care environment. J Perinatol. 2014; 34: 555561. doi: 10.1038/jp.2014.43
10. DeMaso, DR, Calderon, J, Taylor, GA, et al. Psychiatric disorders in adolescents with single ventricle congenital heart disease. Pediatrics 2017; 139: e20162241. doi: 10.1542/peds.2016-2241
11. Ernst, MM, Marino, BS, Cassedy, A, et al. Biopsychosocial predictors of quality of life outcomes in pediatric congenital deart disease. Pediatr Cardiol 2018; 39: 7988. doi: 10.1007/s00246-017-1730-6
12. Visconti, KJ, Saudino, KJ, Rappaport, LA, Newburger, JW, Bellinger, DC. Influence of parental stress and social support on the behavioral adjustment of children with transposition of the great arteries: J Dev Behav Pediatr 2002; 23: 314321. doi: 10.1097/00004703-200210000-00003
13. Ashcraft, LE, Asato, M, Houtrow, AJ, Kavalieratos, D, Miller, E, Ray, KN. Parent empowerment in pediatric healthcare settings: a systematic review of observational studies. Patient 2019; 12: 199212. doi: 10.1007/s40271-018-0336-2
14. Gerstein, ED, Poehlmann-Tynan, J, Clark, R. Mother-child interactions in the NICU: relevance and implications for later parenting. J Pediatr Psychol 2015; 40: 3344. doi: 10.1093/jpepsy/jsu064
15. Maguire, DJ, Taylor, S, Armstrong, K, et al. Long-term outcomes of infants with neonatal abstinence syndrome. Neonatal Netw 2016; 35: 277286. doi: 10.1891/0730-0832.35.5.277
16. McGoron, L, Gleason, MM, Smyke, AT, et al. Recovering from early deprivation: attachment mediates effects of caregiving on psychopathology. J Am Acad Child Adolesc Psychiatry 2012; 51: 683693. doi: 10.1016/j.jaac.2012.05.004
17. Neel, MLM, Stark, AR, Maitre, NL. Parenting style impacts cognitive and behavioural outcomes of former preterm infants: a systematic review. Child Care Health Dev 2018; 44: 507515. doi: 10.1111/cch.12561
18. Wernovsky, G, Licht, DJ. Neurodevelopmental outcomes in children with congenital heart disease—what can we impact? Pediatr Crit Care Med 2016; 17: S232S242. doi: 10.1097/PCC.0000000000000800
19. Battista, V, Feudtner, C. Threats to parents’ roles during the process of their child dying in the paediatric intensive care unit. Evid Based Nurs. 2016; 19: 118118. doi: 10.1136/eb-2015-102297
20. Brabham, DC. Crowdsourcing. Cambridge, MA: MIT Press; 2013.
21. Pierce, JS, Aroian, K, Caldwell, C, et al. The ups and downs of parenting young children with type 1 diabetes: a crowdsourcing study. J Pediatr Psychol 2017; 42: 846860. doi: 10.1093/jpepsy/jsx056
22. Wray, J, Cassedy, A, Ernst, MM, Franklin, RC, Brown, K, Marino, BS. Psychosocial functioning of parents of children with heart disease—describing the landscape. Eur J Pediatr 2018; 177: 18111821. doi: 10.1007/s00431-018-3250-7
23. Hilton, LG, Azzam, T. Crowdsourcing qualitative thematic analysis. Am J Eval 2019; 40: 575589. doi: 10.1177/1098214019836674
24. Braun, V, Clarke, V. Using thematic analysis in psychology. Qual Res Psychol 2006; 3: 77101. doi: 10.1191/1478088706qp063oa
25. Ames, KE, Rennick, JE, Baillargeon, S. A qualitative interpretive study exploring parents’ perception of the parental role in the paediatric intensive care unit. Intensive Crit Care Nurs 2011; 27: 143150. doi: 10.1016/j.iccn.2011.03.004
26. Klug, J, Hall, C, Delaplane, EA, et al. Promoting parent partnership in developmentally supportive care for infants in the pediatric cardiac intensive care unit. Adv Neonatal Care 2020; 20: 161170. doi: 10.1097/ANC.0000000000000679
27. Butler, AE, Copnell, B, Hall, H. When a child dies in the PICU: practice recommendations from a qualitative study of bereaved parents*. Pediatr Crit Care Med 2019; 20: e447e451. doi: 10.1097/PCC.0000000000002040
28. Craig, JW, Glick, C, Phillips, R, Hall, SL, Smith, J, Browne, J. Recommendations for involving the family in developmental care of the NICU baby. J Perinatol 2015; 35: S5S8. doi: 10.1038/jp.2015.142
29. Umberger, E, Canvasser, J, Hall, SL. Enhancing NICU parent engagement and empowerment. Semin Pediatr Surg 2018; 27: 1924. doi: 10.1053/j.sempedsurg.2017.11.004
30. Dobrolet, NC, Nieves, JA, Welch, EM, et al. New approach to interstage care for palliated high-risk patients with congenital heart disease. J Thorac Cardiovasc Surg 2011; 142: 855860. doi: 10.1016/j.jtcvs.2011.01.054
31. Mirghafourvand, M, Ouladsahebmadarek, E, Hosseini, MB, Heidarabadi, S, Asghari-Jafarabadi, M, Hasanpour, S. The effect of creating opportunities for parent empowerment program on parent’s mental health: a systematic review. Iran J Pediatr 2016; 27: e5704. doi: 10.5812/ijp.5704
32. Kasparian, NA, Kan, JM, Sood, E, Wray, J, Pincus, HA, Newburger, JW. Mental health care for parents of babies with congenital heart disease during intensive care unit admission: systematic review and statement of best practice. Early Hum Dev. 2019; 139: 104837. doi: 10.1016/j.earlhumdev.2019.104837
33. Anderson, WG, Arnold, RM, Angus, DC, Bryce, CL. Passive decision-making preference is associated with anxiety and depression in relatives of patients in the intensive care unit. J Crit Care 2009; 24: 249254. doi: 10.1016/j.jcrc.2007.12.010
34. October, TW, Fisher, KR, Feudtner, C, Hinds, PS. The parent perspective: “being a good parent” when making critical decisions in the PICU. Pediatr Crit Care Med 2014; 15: 291298. doi: 10.1097/PCC.0000000000000076
35. Zurca, AD, Wang, J, Cheng, YI, Dizon, ZB, October, TW. Racial minority families’ preferences for communication in pediatric intensive care often overlooked. J Natl Med Assoc 2020; 112: 7481. doi: 10.1016/j.jnma.2019.09.005


Supporting parenting during infant hospitalisation for CHD

  • Colette Gramszlo (a1), Allison Karpyn (a2), Jennifer Christofferson (a3), Linda G. McWhorter (a1), Abigail C. Demianczyk (a4), Stacey L. Lihn (a5), Jena Tanem (a6), Sinai Zyblewski (a7), Elizabeth Lucey Boyle (a7), Anne E. Kazak (a3) (a8) and Erica Sood (a1) (a3) (a8) (a9)...


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