Hostname: page-component-586b7cd67f-rcrh6 Total loading time: 0 Render date: 2024-11-23T00:47:58.121Z Has data issue: false hasContentIssue false

Post-operative discharge education for parent caregivers of children with congenital heart disease: a needs assessment

Published online by Cambridge University Press:  22 September 2020

Candace N. Mannarino*
Affiliation:
Division of Paediatric Cardiology, Northwestern University Feinberg School of Medicine, Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL, USA
Kelly Michelson
Affiliation:
Division of Paediatric Critical Care Medicine, Northwestern University Feinberg School of Medicine, Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL, USA
Lindsay Jackson
Affiliation:
Division of Paediatric Cardiology, Northwestern University Feinberg School of Medicine, Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL, USA
Erin Paquette
Affiliation:
Division of Paediatric Critical Care Medicine, Northwestern University Feinberg School of Medicine, Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL, USA
Mary E. McBride
Affiliation:
Division of Paediatric Cardiology, Northwestern University Feinberg School of Medicine, Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL, USA
*
Author for correspondence: Candace Mannarino, MD, Ann & Robert H. Lurie Children’s Hospital of Chicago, Division of Paediatric Cardiology, Box 21, 225 E Chicago Avenue, Chicago, IL60611, USA. Tel: +1 312 227 4421; Fax: +1 312 227 9646. E-mail: [email protected]

Abstract

Objective:

Children with congenital heart disease (CHD) have complex unique post-operative care needs. Limited data assess parents’ hospital discharge preparedness and education quality following cardiac surgery. The goals were to identify knowledge gaps in discharge preparedness after congenital heart surgery and to assess the acceptability of an educational mobile application to improve discharge preparedness.

Methods:

Telephonic interviews with parents of children with two-ventricle physiology who underwent cardiac surgery 5–7 days post-discharge and in-person interviews with clinicians were conducted. We collected parent and clinician demographics, parent health literacy information and patient clinical data. We analysed interview transcripts using summative content analysis.

Results:

We interviewed 26 parents and 6 clinicians. Twenty-two of the 26 (85%) parents felt ready for discharge; 4 of the 6 (67%) clinicians did not feel most parents were ready for discharge. Fifteen of the 26 parents (58%) reported receiving the majority of discharge teaching on the day of discharge. Eight parents did not feel like all of their questions were answered. Most parents (14/26, 54%) preferred visual educational learning aids and could accurately describe important aspects of care. Most parents (23/26, 88%) and all 6 clinicians felt a mobile application for post-operative care education would be helpful.

Conclusions:

Most parents received education on the day of discharge and could describe the information they received prior to discharge, although there were some preparedness gaps identified after discharge. Clinicians and parents varied in their perceptions of the readiness for discharge. Most responses suggest that a mobile application for discharge education may be helpful for transition to home.

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

Pye, S, Green, A. Parent education after newborn congenital heart surgery. Adv Neonatal Care 2003; 3: 147156.10.1016/S1536-0903(03)00075-4CrossRefGoogle ScholarPubMed
Gaskin, KL, Barron, DJ, Daniels, A. Parents’ preparedness for their infants’ discharge following first-stage cardiac surgery: development of a parental early warning tool. Cardiol Young 2016; 26: 14141424.CrossRefGoogle ScholarPubMed
Benavidez, OJ, He, W, Lahoud-Rahme, M. Readmissions following congenital heart surgery in infants and children. Pediatr Cardiol 2019; 40: 9941000.CrossRefGoogle ScholarPubMed
Sacks, JH, Kelleman, M, McCracken, C, Glanville, M, Oster, M. Pediatric cardiac readmissions: an opportunity for quality improvement? Congenit Heart Dis 2017; 12: 282288.CrossRefGoogle ScholarPubMed
Daily, J, FitzGerald, M, Downing, K, et al. Important knowledge for parents of children with heart disease: parent, nurse, and physician views. Cardiol Young 2016; 26: 6169.10.1017/S1047951114002625CrossRefGoogle ScholarPubMed
March, S. Parents’ perceptions during the transition to home for their child with a congenital heart defect: how can we support families of children with hypoplastic left heart syndrome? J Spec Pediatr Nurs 2017; 22: e12185.10.1111/jspn.12185CrossRefGoogle ScholarPubMed
Schuh, M, Schendel, S, Islam, S, et al. Parent readiness for discharge from a tertiary care pediatric cardiology unit. J Spec Pediatr Nurs 2016; 21: 139146.CrossRefGoogle ScholarPubMed
Weiss, ME, Sawin, KJ, Gralton, K, et al. Discharge teaching, readiness for discharge, and post-discharge outcomes in parents of hospitalized children. J Pediatr Nurs 2017; 34: 5864.10.1016/j.pedn.2016.12.021CrossRefGoogle ScholarPubMed
Staveski, SL, Zhelva, B, Paul, R, et al. Pediatric cardiac surgery Parent Education Discharge Instruction (PEDI) program: a pilot study. World J Pediatr Congenit Heart Surg 2015; 6: 1825.CrossRefGoogle ScholarPubMed
Lantin-Hermoso, MR, Berger, S, Bhatt, AB, et al. The care of children with congenital heart disease in their primary medical home. Pediatrics 2017; 140: e20172607.CrossRefGoogle ScholarPubMed
Williams, IA, Shaw, R, Kleinman, CS, et al. Parental understanding of neonatal congenital heart disease. Pediatr Cardiol 2008; 29: 10591065.10.1007/s00246-008-9254-8CrossRefGoogle ScholarPubMed
Saharan, S, Legg, AT, Armsby, LB, Zubair, MM, Reed, RD, Langley, SM. Causes of readmission after operation for congenital heart disease. Ann Thorac Surg 2014; 98: 16671673.CrossRefGoogle ScholarPubMed
Lane, B, Hanke, SP, Giambra, B, Madsen, NL, Staveski, SL. Development of a clinician-parent home care education intervention. Cardiol Young 2019; 29: 12301235.10.1017/S1047951119001318CrossRefGoogle ScholarPubMed
Cavalcanti, PE, Sa, MP, Santos, CA, et al. Stratification of complexity in congenital heart surgery: comparative study of the Risk Adjustment for Congenital Heart Surgery (RACHS-1) method, Aristotle basic score and Society of Thoracic Surgeons-European Association for Cardio- Thoracic Surgery (STS-EACTS) mortality score. Rev Bras Cir Cardiovasc 2015; 30: 148158.Google ScholarPubMed
White, LJ, Fredericks, R, Mannarino, CN, Janofsky, S, Faustino, EVS. Epidemiology of bleeding in critically Ill children. J Pediatr 2017; 184: 114119.e116.10.1016/j.jpeds.2017.01.026CrossRefGoogle Scholar
Sanders, LM, Federico, S, Klass, P, Abrams, MA, Dreyer, B. Literacy and child health: a systematic review. Arch Pediatr Adolesc Med 2009; 163: 131140.CrossRefGoogle ScholarPubMed
Cawthon, C, Mion, LC, Willens, DE, Roumie, CL, Kripalani, S. Implementing routine health literacy assessment in hospital and primary care patients. Jt Comm J Qual Patient Saf 2014; 40: 6876.Google ScholarPubMed
Chew, LD, Griffin, JM, Partin, MR, et al. Validation of screening questions for limited health literacy in a large VA outpatient population. J Gen Intern Med 2008; 23: 561566.CrossRefGoogle Scholar
Harris, PA, Taylor, R, Thielke, R, Payne, J, Gonzalez, N, Conde, JG. Research electronic data capture (REDCap): a metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform 2009; 42: 377381.CrossRefGoogle ScholarPubMed
Hsieh, HF, Shannon, SE. Three approaches to qualitative content analysis. Qual Health Res 2005; 15: 12771288.CrossRefGoogle ScholarPubMed
Atkinson, S, Abu el Haj, M. Domain analysis for qualitative public health data. Health Policy Plan 1996; 11: 438442.CrossRefGoogle ScholarPubMed
Dedoose Version 4.12. Web Application for Managing, Analyzing, and Presenting Qualitative and Mixed Method Research Data. SocioCultural Research Consultants, LLC, Los Angeles, CA, 2020. www.dedoose.com.Google Scholar
Berger, JT, Holubkov, R, Reeder, R, et al. Morbidity and mortality prediction in pediatric heart surgery: physiological profiles and surgical complexity. J Thorac Cardiovasc Surg 2017; 154: 628.e626.10.1016/j.jtcvs.2017.01.050CrossRefGoogle ScholarPubMed
Smith, VC, Hwang, SS, Dukhovny, D, Young, S, Pursley, DM. Neonatal intensive care unit discharge preparation, family readiness and infant outcomes: connecting the dots. J Perinatol 2013; 33: 415421.10.1038/jp.2013.23CrossRefGoogle Scholar
Baker, CD, Martin, S, Thrasher, J, et al. A standardized discharge process decreases length of stay for ventilator-dependent children. Pediatrics 2016; 137: e20150637.CrossRefGoogle ScholarPubMed
Nowak, M, Lee, S, Karbach, U, Pfaff, H, Gross, SE. Short length of stay and the discharge process: preparing breast cancer patients appropriately. Patient Educ Couns 2019; 102: 23182324.10.1016/j.pec.2019.08.012CrossRefGoogle ScholarPubMed
Patra, KP, Mains, N, Dalton, C, et al. Improving discharge outcomes by using a standardized risk assessment and intervention tool facilitated by advanced pediatric providers. Hosp Pediatr 2020; 10: 173180.10.1542/hpeds.2019-0109CrossRefGoogle ScholarPubMed
Sigalet, E, Cheng, A, Donnon, T, et al. A simulation-based intervention teaching seizure management to caregivers: a randomized controlled pilot study. Paediatr Child Health 2014; 19: 373378.10.1093/pch/19.7.373CrossRefGoogle ScholarPubMed
Arnold, J, Diaz, MC. Simulation training for primary caregivers in the neonatal intensive care unit. Semin Perinatol 2016; 40: 466472.CrossRefGoogle ScholarPubMed
Raines, DA. Simulation as part of discharge teaching for parents of infants in the neonatal intensive care unit. MCN Am J Matern Child Nurs 2017; 42: 95100.10.1097/NMC.0000000000000312CrossRefGoogle ScholarPubMed
Tofil, NM, Rutledge, C, Zinkan, JL, et al. Ventilator caregiver education through the use of high-fidelity pediatric simulators: a pilot study. Clin Pediatr (Phila) 2013; 52: 10381043.CrossRefGoogle ScholarPubMed
Galvin, EC, Wills, T, Coffey, A. Readiness for hospital discharge: a concept analysis. J Adv Nurs 2017; 73: 25472557.CrossRefGoogle ScholarPubMed
Balvardi, S, Pecorelli, N, Castelino, T, et al. Measuring in-hospital recovery after colorectal surgery within a well-established enhanced recovery pathway: a comparison between hospital length of stay and time to readiness for discharge. Dis Colon Rectum 2018; 61: 854860.10.1097/DCR.0000000000001061CrossRefGoogle ScholarPubMed
Bhatt, AB, Cheeran, DD, Shemisa, K, et al. Physician-specific practice patterns about discharge readiness and heart failure utilization outcomes. Circ Cardiovasc Qual Outcomes 2018; 11: e004365.CrossRefGoogle ScholarPubMed
Kogon, B, Jain, A, Oster, M, Woodall, K, Kanter, K, Kirshbom, P. Risk factors associated with readmission after pediatric cardiothoracic surgery. Ann Thorac Surg 2012; 94: 865873.CrossRefGoogle ScholarPubMed
Crowe, S, Ridout, DA, Knowles, R, et al. Death and emergency readmission of infants discharged after interventions for congenital heart disease: a national study of 7643 infants to inform service improvement. J Am Heart Assoc 2016; 5: e003369.10.1161/JAHA.116.003369CrossRefGoogle ScholarPubMed
Morrison, AK, Schapira, MM, Gorelick, MH, Hoffmann, RG, Brousseau, DC. Low caregiver health literacy is associated with higher pediatric emergency department use and nonurgent visits. Acad Pediatr 2014; 14: 309314.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.CrossRefGoogle ScholarPubMed
Gramszlo, C, Karpyn, A, Demianczyk, AC, et al. Parent perspectives on family-based psychosocial interventions for congenital heart disease. J Pediatr 2020; 216: 5157.e52.CrossRefGoogle Scholar
Supplementary material: File

Mannarino et al. supplementary material

Appendix A

Download Mannarino et al. supplementary material(File)
File 31.9 KB
Supplementary material: File

Mannarino et al. supplementary material

Appendix B

Download Mannarino et al. supplementary material(File)
File 19.8 KB