Hostname: page-component-cd9895bd7-gxg78 Total loading time: 0 Render date: 2024-12-26T23:28:04.506Z Has data issue: false hasContentIssue false

Supporting parenting during infant hospitalisation for CHD

Published online by Cambridge University Press:  06 August 2020

Colette Gramszlo*
Affiliation:
Division of Behavioral Health, Nemours/Alfred I. duPont Hospital for Children, Wilmington, DE, USA
Allison Karpyn
Affiliation:
Center for Research in Education and Social Policy, Department of Human Development and Family Sciences, University of Delaware, Newark, DE, USA
Jennifer Christofferson
Affiliation:
Center for Healthcare Delivery Science, Nemours Children’s Health System, Wilmington, DE, USA
Linda G. McWhorter
Affiliation:
Division of Behavioral Health, Nemours/Alfred I. duPont Hospital for Children, Wilmington, DE, USA
Abigail C. Demianczyk
Affiliation:
Department of Psychiatry and Behavioral Sciences, Children’s Hospital of Philadelphia, Philadelphia, PA, USA
Stacey L. Lihn
Affiliation:
Sisters by Heart, El Segundo, CA, USA
Jena Tanem
Affiliation:
Herma Heart Center, Children’s Wisconsin, Milwaukee, WI, USA
Sinai Zyblewski
Affiliation:
Department of Pediatrics, Medical University of South Carolina, Charleston, SC, USA
Elizabeth Lucey Boyle
Affiliation:
Department of Pediatrics, Medical University of South Carolina, Charleston, SC, USA
Anne E. Kazak
Affiliation:
Center for Healthcare Delivery Science, Nemours Children’s Health System, Wilmington, DE, USA Department of Pediatrics, Sidney Kimmel Medical College, Thomas Jefferson University,Philadelphia, PA, USA
Erica Sood
Affiliation:
Division of Behavioral Health, Nemours/Alfred I. duPont Hospital for Children, Wilmington, DE, USA Center for Healthcare Delivery Science, Nemours Children’s Health System, Wilmington, DE, USA Department of Pediatrics, Sidney Kimmel Medical College, Thomas Jefferson University,Philadelphia, PA, USA Nemours Cardiac Center, Nemours/Alfred I. duPont Hospital for Children, Wilmington, DE, USA
*
Author for correspondence: Colette Gramszlo, PhD, Division of Behavioral Health, Alfred I. duPont Hospital for Children, 1801 Rockland Road, Wilmington, DE19803, USA. Tel: +1 302-300-2908; Fax: +1 302-651-4543. E-mail: [email protected]

Abstract

Objective:

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.

Results:

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.

Conclusions:

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.

Type
Original Article
Copyright
© The Author(s), 2020. Published by Cambridge University Press

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

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 CrossRefGoogle ScholarPubMed
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 CrossRefGoogle ScholarPubMed
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 CrossRefGoogle ScholarPubMed
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 CrossRefGoogle ScholarPubMed
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 CrossRefGoogle ScholarPubMed
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 CrossRefGoogle ScholarPubMed
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 CrossRefGoogle ScholarPubMed
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 CrossRefGoogle ScholarPubMed
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 CrossRefGoogle ScholarPubMed
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 CrossRefGoogle ScholarPubMed
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 CrossRefGoogle Scholar
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 CrossRefGoogle ScholarPubMed
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 CrossRefGoogle ScholarPubMed
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 CrossRefGoogle ScholarPubMed
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 Google ScholarPubMed
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 CrossRefGoogle ScholarPubMed
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 CrossRefGoogle ScholarPubMed
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 CrossRefGoogle ScholarPubMed
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 CrossRefGoogle ScholarPubMed
Brabham, DC. Crowdsourcing. Cambridge, MA: MIT Press; 2013.CrossRefGoogle Scholar
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 CrossRefGoogle ScholarPubMed
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 CrossRefGoogle ScholarPubMed
Hilton, LG, Azzam, T. Crowdsourcing qualitative thematic analysis. Am J Eval 2019; 40: 575589. doi: 10.1177/1098214019836674 CrossRefGoogle Scholar
Braun, V, Clarke, V. Using thematic analysis in psychology. Qual Res Psychol 2006; 3: 77101. doi: 10.1191/1478088706qp063oa CrossRefGoogle Scholar
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 CrossRefGoogle ScholarPubMed
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 CrossRefGoogle ScholarPubMed
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 CrossRefGoogle ScholarPubMed
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 CrossRefGoogle ScholarPubMed
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 CrossRefGoogle ScholarPubMed
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 CrossRefGoogle ScholarPubMed
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 CrossRefGoogle Scholar
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 CrossRefGoogle ScholarPubMed
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 CrossRefGoogle ScholarPubMed
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 CrossRefGoogle ScholarPubMed
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 CrossRefGoogle ScholarPubMed