Hostname: page-component-8448b6f56d-xtgtn Total loading time: 0 Render date: 2024-04-23T21:48:46.693Z Has data issue: false hasContentIssue false
  • English
  • Français

Filling a significant gap in the cardiac ICU: implementation of individualised developmental care

Published online by Cambridge University Press:  07 August 2017

Samantha C. Butler ,
Kate Huyler ,
Aditya Kaza  and
Chris Rachwal
Samantha C. Butler*
Affiliation:
Department of Psychiatry, Boston Children’s Hospital, Boston, Massachusetts, United States of America
Kate Huyler
Affiliation:
Department of Child Life, Boston Children’s Hospital, Boston, Massachusetts, United States of America
Aditya Kaza
Affiliation:
Department of Cardiac Surgery, Boston Children’s Hospital, Boston, Massachusetts, United States of America
Chris Rachwal
Affiliation:
Department of Cardiovascular and Critical Care Programs, Boston Children’s Hospital, Boston, Massachusetts, United States of America
*
Correspondence to: S. Butler, PhD, Boston Children’s Hospital, Enders Research Building Room 107, 300 Longwood Ave, Boston, MA 02115, United States of America. Tel: 617 355 7483; Fax: 617-730-0224; E-mail: Samantha.butler@childrens.harvard.edu
Get access Rights & Permissions [Opens in a new window]

Abstract

Mortality rates among children with CHD have significantly declined, although the incidence of neurological abnormalities and neurodevelopmental impairment has increased. Research has focussed on outcomes, with limited attention on prevention and intervention. Although some developmental differences and challenges seen in children with CHD are explained by the cumulative effect of medical complications associated with CHD, many sequelae are not easily explained by medical complications alone. Although cardiac intensive care is lifesaving, it creates high levels of environmental and tactile stimulation, which potentially contribute to adverse neurodevelopmental outcomes. The therapeutic method of individualised developmental care, such as the Newborn Individualized Developmental Care and Assessment Program, provides early support and preventive intervention based on each child’s behavioural signals of stress, comfort, and strength. Implementing developmental care practices in a cardiac ICU requires a thoughtful and well-planned approach to ensure successful adoption of practice changes. This paper reviews how developmental care was introduced in a paediatric inpatient cardiac service through multidisciplinary collaborative staff education, clinician support, child neurodevelopment assessment, parent support, and research initiatives. Given the known risk for children with CHD, cardiac medical professionals must shift their focus to not only assuring the child’s survival but also optimising development through individualised developmental care in the cardiac ICU.

Keywords

developmental carecardiac intensive careNewborn Individualized Developmental Care and Assessment Program (NIDCAP)neurodevelopmentinfancy
Type
Original Articles
Information
Cardiology in the Young , Volume 27 , Issue 9 , November 2017 , pp. 1797 - 1806
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. Mahle, WT, Spray, TL, Wernovsky, G, Gaynor, JW, Clark, BJ. Survival after reconstructive surgery for hypoplastic left heart syndrome: a 15-year experience from a single institution. Circulation 2000; 102: Iii-136–Iii-41.Google Scholar
2. Jacobs, JP, Quintessenza, JA, Burke, RP, et al. Analysis of regional congenital cardiac surgical outcomes in Florida using the Society of Thoracic Surgeons Congenital Heart Surgery Database. Cardiol Young 2009; 19: 360–369.Google Scholar
3. Tweddell, JS, Hoffman, GM. Postoperative management in patients with complex congenital heart disease. Semin Thorac Cardiovasc Surg Pediatr Card Surg Annu 2002; 5: 187–205.Google Scholar
4. Butler, S, Sadhwani, A, Stopp, C, et al. Neurodevelopmental assessment of infants with congenital heart disease in the early postoperative period. Second Annual Cardiac Neurodevelopmental Symposium, Cincinnati, OH, June 2016.Google Scholar
5. Marino, BS, Lipkin, PH, Newburger, JW, et al. Neurodevelopmental outcomes in children with congenital heart disease: evaluation and management: a scientific statement from the American Heart Association. Circulation 2012; 126: 1143–1172.Google Scholar
6. Mussatto, KA, Hoffmann, RG, Hoffman, GM, et al. Risk and prevalence of developmental delay in young children with congenital heart disease. Pediatrics. 2014; 133: e570–e577.CrossRefGoogle ScholarPubMed
7. Newburger, JW, Sleeper, LA, Bellinger, DC, 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
8. Wernovsky, G. Current insights regarding neurological and developmental abnormalities in children and young adults with complex congenital cardiac disease. Cardiol Young 2006; 16: 92–104.Google Scholar
9. Snookes, SH, Gunn, JK, Eldridge, BJ, et al. A systematic review of motor and cognitive outcomes after early surgery for congenital heart disease. Pediatrics 2010; 125: e818–e827.Google Scholar
10. Limperopoulos, C, Majnemer, A, Shevell, MI, et al. Predictors of developmental disabilities after open heart surgery in young children with congenital heart defects. J Pediatr 2002; 141: 51–58.Google Scholar
11. Clouchoux, C, Du Plessis, A, Bouyssi-Kobar, M, et al. Delayed cortical development in fetuses with complex congenital heart disease. Cereb Cortex 2013; 23: 2932–2943.Google Scholar
12. Limperopoulos, C, Tworetzky, W, McElhinney, DB, et al. Brain volume and metabolism in fetuses with congenital heart disease: evaluation with quantitative magnetic resonance imaging and spectroscopy. Circulation 2010; 121: 26–33.Google Scholar
13. Licht, DJ, Wang, J, Silvestre, DW, et al. Preoperative cerebral blood flow is diminished in neonates with severe congenital heart defects. J Thorac Cardiovasc Surg 2004; 128: 841–849.Google Scholar
14. Miller, SP, McQuillen, PS, Hamrick, S, et al. Abnormal brain development in newborns with congenital heart disease. N Engl J Med 2007; 357: 1928–1938.Google Scholar
15. Anand, KJS, Scalzo, FM. Can adverse neonatal experiences alter brain development and subsequent behavior? Biol Neonate. 2000; 77: 69–82.Google Scholar
16. Massaro, AN, Glass, P, Brown, J, et al. Neurobehavioral abnormalities in newborns with congenital heart disease requiring open-heart surgery. J Pediatr 2011; 158: 678–681.e2.Google Scholar
17. Sood, E, Berends, WM, Butcher, JL, et al. Developmental care in North American Pediatric Cardiac Intensive Care Units: Survey of Current Practices. Adv Neonatal Care 2016; 16: 211–219.Google Scholar
18. Peng, N-H, Chen, C-H, Bachman, J, et al. To explore the relationships between physiological stress signals and stress behaviors in preterm infants during periods of exposure to environmental stress in the hospital. Biol Res Nurs 2011; 13: 357–363.Google Scholar
19. Smith, GC, Gutovich, J, Smyser, C, et al. Neonatal intensive care unit stress is associated with brain development in preterm infants. Ann Neurol 2011; 70: 541–549.Google Scholar
20. Perlman, JM. Neurobehavioral deficits in premature graduates of intensive care – potential medical and neonatal environmental risk factors. Pediatrics 2001; 108: 1339–1348.Google Scholar
21. Daniels, JM, Harrison, TM. A case study of the environmental experience of a hospitalized newborn infant with complex congenital heart disease. J Cardiovasc Nurs. 2016; 31: 390–398.Google Scholar
22. Winnicott, DW. The theory of the parent-infant relationship. Int J Psychoanal 1960; 41: 585.Google Scholar
23. Als, H. Program Guide – Newborn Individualized Developmental Care and Assessment Program (NIDCAP): An Education and Training Program for Health Care Professionals. NIDCAP Federation International: Boston, MA, 1986, revised 2015.Google Scholar
24. Silberstein, D, Litmanovitz, I. Developmental care in the neonatal intensive care unit according to Newborn Individualized Developmental Care and Assessment Program (NIDCAP). Harefuah 2016; 155: 27–31, 68, 67.Google ScholarPubMed
25. Als, H, Lawhon, G, Duffy, FH, McAnulty, GB, Gibes-Grossman, R, Blickman, JG. Individualized developmental care for the very low birthweight preterm infant: medical and neurofunctional effects. JAMA 1994; 272: 853–858.CrossRefGoogle ScholarPubMed
26. Als, H, Gilkerson, L, Duffy, FH, et al. A three-center randomized controlled trial of individualized developmental care for very low birth weight preterm infants: medical, neurodevelopmental, parenting and caregiving effects. J Dev Behav Pediatr 2003; 24: 399–408.Google Scholar
27. Als, H, Duffy, F, McAnulty, GB, et al. Early experience alters brain function and structure. Pediatrics 2004; 113: 846–857.Google Scholar
28. Buehler, DM, Als, H, Duffy, FH, McAnulty, GB, Liederman, J. Effectiveness of individualized developmental care for low-risk preterm infants: behavioral and electrophysiological evidence. Pediatrics 1995; 96: 923–932.Google Scholar
29. Kleberg, A, Westrup, B, Stjernqvist, K, Lagercrantz, H. Indications of improved cognitive development at one year of age among infants born very prematurely who received care based on the Newborn Individualized Developmental Care and Assessment Program (NIDCAP). Early Hum Dev 2002; 68: 83–91.Google Scholar
30. Westrup, B, Kleberg, A, von Eichwald, K, Stjernqvist, K, Lagercrantz, H. A randomized controlled trial to evaluate the effects of the Newborn Individualized Developmental Care and Assessment Program in a Swedish setting. Pediatrics 2000; 105: 66–72.CrossRefGoogle Scholar
31. Westrup, B, Böhm, B, Lagercrantz, H, Stjernqvist, K. Preschool outcome in children born very prematurely and cared for according to the Newborn Individualized Developmental Care and Assessment Program (NIDCAP). Acta Paediatr 2004; 93: 498–507.Google Scholar
32. Moody, C, Callahan, TJ, Aldrich, H, Gance-Cleveland, B, Sables-Baus, S. Early initiation of Newborn Individualized Developmental Care and Assessment Program (NIDCAP) reduces length of stay: a quality improvement project. J Pediatr Nurs, 2017; 32: 59–63.Google Scholar
33. Als, H, Duffy, FH, McAnulty, G, et al. NIDCAP improves brain function and structure in preterm infants with severe intrauterine growth restriction. J Perinatol 2012; 32: 797–803.Google Scholar
34. Sannino, P, Giannì, ML, De Bon, G, et al. Support to mothers of premature babies using NIDCAP method: a non-randomized controlled trial. Early Hum Dev 2016; 95: 15–20.Google Scholar
35. Kleberg, A, Hellström-Westas, L, Widström, A-M. Mothers’ perception of Newborn Individualized Developmental Care and Assessment Program (NIDCAP) as compared to conventional care. Early Hum Dev 2007; 83: 403–411.Google Scholar
36. Nelson, AM, Bedford, PJ. Mothering a preterm infant receiving NIDCAP care in a level III newborn intensive care unit. J Pediatr Nurs 2016; 31: e271–e282.Google Scholar
37. Ohlsson, A, Jacobs, SE. NIDCAP: a systematic review and meta-analyses of randomized controlled trials. Pediatrics 2013; 131: e881–e893.Google Scholar
38. Mosqueda, R, Castilla, Y, Perapoch, J, Lora, D, López-Maestro, M, Pallás, C. Necessary resources and barriers perceived by professionals in the implementation of the NIDCAP. Early Hum Dev 2013; 89: 649–653.CrossRefGoogle ScholarPubMed
39. Als, H, Buehler, D, Gilkerson, L, Smith, K. Profile of the Nursery Environment and of Care Components. Template Manual, Part I. NIDCAP Federation International: Boston, MA, 1990, revised 2008.Google Scholar
40. Als, H. Toward a synactive theory of development: promise for the assessment of infant individuality. Infant Ment Health J 1982; 3: 229–243.Google Scholar
41. Als, H, Butler, S, Kosta, S, McAnulty, G. The assessment of preterm infants’ behavior (APIB): furthering the understanding and measurement of neurodevelopmental competence in preterm and fullterm infants. Ment Retard Dev Disabil Res Rev 2005; 11: 94–102.Google Scholar
42. Nugent, JK. Understanding Newborn Behavior & Early Relationships: The Newborn Behavioral Observations (NBO) System Handbook. Paul H. Brookes Publishing, Baltimore, MD, 2007.Google Scholar
43. Bayley, N. Bayley Scales of Infant and Toddler Development®, Bayley-III Screening Test, 3rd edn. Pearson, 2006. Harcourt Assessment, Inc. SanAntonio, TX.CrossRefGoogle Scholar
44. Gooding, JS, Cooper, LG, Blaine, AI, Franck, LS, Howse, JL, Berns, SD. Family support and family-centered care in the neonatal intensive care unit: origins, advances, impact. Semin Perinatol, 2011: 20–28.Google Scholar
45. Gidding, SS, Dennison, BA, Birch, LL, et al. Dietary recommendations for children and adolescents a guide for practitioners: consensus statement from the American Heart Association. Circulation 2005; 112: 2061–2075.Google Scholar
46. Als, H, McAnulty, G. Developmental care guidelines for use in the Newborn Intensive Care Unit (NICU). Children’s Hospital, Boston, MA, 1998.Google Scholar