Hostname: page-component-76fb5796d-25wd4 Total loading time: 0 Render date: 2024-04-28T06:43:34.364Z Has data issue: false hasContentIssue false
  • English
  • Français

Parental communication satisfaction with the clinical team in the paediatric cardiac ICU

Published online by Cambridge University Press:  26 June 2023

Jennifer K. Walter Open the ORCID record for Jennifer K. Walter [Opens in a new window] ,
Chris Feudtner ,
Arzu Cetin ,
Aaron G. DeWitt ,
Michelle Zhou ,
Diana Montoya-Williams ,
Rob Olsen ,
Heather Griffis ,
Catherine Williams  and
Andrew Costarino
Jennifer K. Walter*
Affiliation:
Pediatric Advanced Care Team, Children’s Hospital of Philadelphia, Philadelphia, PA, USA Clinical Futures, Children’s Hospital of Philadelphia, Philadelphia, PA, USA
Chris Feudtner
Affiliation:
Pediatric Advanced Care Team, Children’s Hospital of Philadelphia, Philadelphia, PA, USA Clinical Futures, Children’s Hospital of Philadelphia, Philadelphia, PA, USA
Arzu Cetin
Affiliation:
Clinical Futures, Children’s Hospital of Philadelphia, Philadelphia, PA, USA
Aaron G. DeWitt
Affiliation:
Cardiac Center, Children’s Hospital of Philadelphia, Philadelphia, PA, USA
Michelle Zhou
Affiliation:
Clinical Futures, Children’s Hospital of Philadelphia, Philadelphia, PA, USA
Diana Montoya-Williams
Affiliation:
Division of Neonatology, Children’s Hospital of Philadelphia, Philadelphia, PA, USA PolicyLab, Children’s Hospital of Philadelphia, Philadelphia, PA, USA
Rob Olsen
Affiliation:
Center for Healthcare Quality and Analytics, Children’s Hospital of Philadelphia, Philadelphia, PA, USA
Heather Griffis
Affiliation:
Data Science and Biostatistics Unit, Department of Biomedical and Health Informatics, Children’s Hospital of Philadelphia, Philadelphia, PA, USA
Catherine Williams
Affiliation:
Data Science and Biostatistics Unit, Department of Biomedical and Health Informatics, Children’s Hospital of Philadelphia, Philadelphia, PA, USA
Andrew Costarino
Affiliation:
Cardiac Center, Children’s Hospital of Philadelphia, Philadelphia, PA, USA
*
Corresponding author: Jennifer Walter; Email: Walterj1@chop.edu
Get access Rights & Permissions [Opens in a new window]

Abstract

Introduction

Understanding parents’ communication preferences and how parental and child characteristics impact satisfaction with communication is vital to mitigate communication challenges in the cardiac ICU.

Methods

This cross-sectional survey was conducted from January 2019 to March 2020 in a paediatric cardiac ICU with parents of patients admitted for at least two weeks. Family satisfaction with communication with the medical team was measured using the Communication Assessment Tool for Team settings. Clinical characteristics were collected via Epic, Pediatric Cardiac Critical Care Consortium local entry and Society for Thoracic Surgeons Congenital Heart Surgery Databases. Associations between communication score and parental mood, stress, perceptions of clinical care, and demographic characteristics along with patient demographic and clinical characteristics were examined. Multivariable ordinal models were conducted with characteristics significant in bivariate analysis.

Results

In total, 93 parents of 84 patients (86% of approached) completed surveys. Parents were 63% female and 70% White. Seventy per cent of patients were <6 months old at admission, 25% had an extracardiac abnormality, and 80% had a cardiac surgery this admission. Parents of children with higher pre-surgical risk of mortality scores (OR 2.875; 95%CI 1.076–7.678), presence of surgical complications (72 [63.0, 75.0] vs. 64 [95%CI 54.6, 73] (p = 0.0247)), and greater satisfaction with care in the ICU (r = 0.93922; p < 0.0001) had significantly higher communication scores.

Conclusion

These findings can prepare providers for scenarios with higher risk for communication challenges and demonstrate the need for further investigation into interventions that reduce parental anxiety and improve communication for patients with unexpected clinical trajectories

Keywords

Paediatriccardiac intensive care unitfamily-centred communicationsatisfaction with communication
Type
Original Article
Information
Cardiology in the Young , Volume 34 , Issue 2 , February 2024 , pp. 282 - 290
Check for updates
Copyright
© The Author(s), 2023. 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

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
Woolf-King, SE, Anger, A, Arnold, EA, Weiss, SJ, Teitel, D. Mental health among parents of children with critical congenital heart defects: a systematic review. J Am Heart Assoc 2017; 6. DOI: 10.1161/JAHA.116.004862.CrossRefGoogle ScholarPubMed
Neubauer, K, Williams, EP, Donohue, PK, Boss, RD. Communication and decision-making regarding children with critical cardiac disease: a systematic review of family preferences. Cardiol Young 2018; 28: 1088–1092. DOI: 10.1017/s1047951118001233.CrossRefGoogle ScholarPubMed
Balkin, EM, Sleeper, LA, Kirkpatrick, JN, et al. Physician perspectives on palliative care for children with advanced heart disease: a comparison between pediatric cardiology and palliative care physicians. J Palliat Med 2018; 21: 773–779. DOI: 10.1089/jpm.2017.0612.CrossRefGoogle ScholarPubMed
Blume, E, Morell Balkin, E, Aiyagari, R, et al. Parental perspectives on suffering and quality of life at end-of-life in children with advanced heart disease: an exploratory study. Pediatr Crit Care Med 2014; 15: 336–342.CrossRefGoogle ScholarPubMed
Simeone, S, Pucciarelli, G, Perrone, M, et al. The lived experiences of the parents of children admitted to a paediatric cardiac intensive care unit. Heart Lung. 2018; 47: 631–637.CrossRefGoogle ScholarPubMed
Geoghegan, S, Oulton, K, Bull, C, Brierley, J, Peters, M, Wray, J. The experience of long-stay parents in the ICU: a qualitative study of parent and staff perspectives. Pediatr Crit Care Med 2016; 17: e496–e501.CrossRefGoogle ScholarPubMed
Yagiela, LM, Harper, FW, Meert, KL. Reframing pediatric cardiac intensive care outcomes: the importance of the family and the role of pediatric medical traumatic stress. Progr Pediatr Cardiol. 2018; 48: 2–7.CrossRefGoogle Scholar
Fisk, AC, Mott, S, Meyer, S, Connor, JA. Parent perception of their role in the pediatric cardiac intensive care unit. Dimens Crit Care Nurs 2022; 41: 2–9. DOI: 10.1097/DCC.0000000000000503.CrossRefGoogle ScholarPubMed
Davidson, JE, Aslakson, RA, Long, AC, et al. Guidelines for family-centered care in the neonatal, pediatric, and adult ICU. Crit Care Med. 2017; 45: 103–128.CrossRefGoogle ScholarPubMed
Arya, B, Levasseur, JS, Williams, SW, Ismeé, A. Parents of children with congenital heart disease prefer more information than cardiologists provide. Congenit Heart Dis 2013; 8. DOI: 10.1111/j.17470803.2012.00706.x.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: 626–634. DOI: 10.1097/PCC.0000000000001528.CrossRefGoogle ScholarPubMed
Miller, MK, Blume, ED, Samsel, C, Elia, E, Brown, DW, Morell, E. Parent-provider communication in hospitalized children with advanced heart disease. Pediatr Cardiol 2022; 43(8): 1761–1769. DOI: 10.1007/s00246-022-02913-0.CrossRefGoogle ScholarPubMed
Balkin, EM, Wolfe, J, Ziniel, SI, et al. Physician and parent perceptions of prognosis and end-of-life experience in children with advanced heart disease. J Palliat Med 2015; 18: 318–323. DOI: 10.1089/jpm.2014.0305.CrossRefGoogle ScholarPubMed
Studdert, DM, Burns, JP, Mello, MM, Puopolo, AL, Truog, RD, Brennan, TA. Nature of conflict in the care of pediatric intensive care patients with prolonged stay. Pediatrics 2003; 112: 553–558.CrossRefGoogle ScholarPubMed
Golfenshtein, N, Deatrick, JA, Lisanti, AJ, Medoff-Cooper, B. Coping with the stress in the cardiac intensive care unit: can mindfulness be the answer? J Pediatr Nurs. 2017; 37: 117–126.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: 118–125.CrossRefGoogle ScholarPubMed
Lisanti, AJ, Golfenshtein, N, Medoff-Cooper, B. The pediatric cardiac intensive care unit parental stress model: refinement using directed content analysis. ANS Adv Nurs Sci. 2017; 40: 319–336.CrossRefGoogle ScholarPubMed
Street, RLJ, Makoul, G, Arora, NK, Epstein, R. How does communication heal? Pathways linking clinician-patient communication to health outcomes. Patient Educ Couns. 2009; 74: 295–301. DOI: 10.1016/j.pec.2008.11.015.CrossRefGoogle ScholarPubMed
Mercer, LM, Tanabe, P, Pang, PS, et al. Patient perspectives on communication with the medical team: pilot study using the communication assessment tool-team (CAT-T). Patient Educ Counsel. 2008; 73: 220–223.CrossRefGoogle ScholarPubMed
Makoul, G, Krupat, E, Chang, C-H. Measuring patient views of physician communication skills: development and testing of the Communication Assessment Tool. Patient Educ Counsel. 2007; 67: 333–342. DOI: 10.1016/j.pec.2007.05.005.CrossRefGoogle ScholarPubMed
The Society for Thoracic Surgeons (STS) Congenital Heart Surgery Database. Available at: https://www.sts.org/registries/sts-national-database/congenital-heart-surgery-database. Accessed 6/19/23, 2022.Google Scholar
Pediatric Cardiac Critical Care Consortium. Available at: http://pc4quality.org/. Accessed 6/19/23, 2022.Google Scholar
Epstein, D, Unger, JB, Ornelas, B, et al. Psychometric evaluation of a modified version of the family satisfaction in the ICU survey in parents/caregivers of critically ill children*. Pediatr Crit Care Med 2013; 14: e350–e356. DOI: 10.1097/PCC.0b013e3182917705.CrossRefGoogle ScholarPubMed
Anderson, LA, Dedrick, RF. Development of the Trust in Physician scale: a measure to assess interpersonal trust in patient-physician relationships. Psychol Rep 1990; 67: 1091–1100.Google Scholar
Zigmond, AS, Snaith, RP. The hospital anxiety and depression scale. Acta Psychiatr Scand. 1983; 67: 361–370.CrossRefGoogle ScholarPubMed
Bjelland, I, Dahl, AA, Haug, TT, Neckelmann, D. The validity of the hospital anxiety and depression scale. An updated literature review. J Psychosom Res. 2002; 52: 69–77. DOI: 10.1016/s0022-3999(01)00296-3.CrossRefGoogle ScholarPubMed
Creamer, M, Bell, R, Failla, S. Psychometric properties of the Impact of Event Scale - revised. Behav Res Ther 2003; 41: 1489–1496.CrossRefGoogle ScholarPubMed
Boyden, JY, Hill, DL, Carroll, KW, Morrison, WE, Miller, VA, Feudtner, C. The association of perceived social support with anxiety over time in parents of children with serious illnesses. J Palliat Med. 2020; 23: 527–534. DOI: 10.1089/jpm.2019.0387.CrossRefGoogle ScholarPubMed
Madrigal, VN, Hill, DL, Shults, J, Feudtner, C. Trust in physicians, anxiety and depression, and decision-making preferences among parents of children with serious illness. J Palliat Med. 2022; 25: 428–436. DOI: 10.1089/jpm.2021.0063.CrossRefGoogle ScholarPubMed
Miller, F, Miller, P. Transgenerational trauma and trust restoration. AMA J Ethics 2021; 23: E480–486. DOI: 10.1001/amajethics.2021.480.Google ScholarPubMed
Epstein, D, Unger, JB, Ornelas, B, et al. Satisfaction with care and decision making among parents/caregivers in the pediatric intensive care unit: a comparison between English-speaking whites and Latinos. J Crit Care. 2015; 30: 236–241.CrossRefGoogle ScholarPubMed
Bazargan, M, Cobb, S, Assari, S, Bazargan-Hejazi, S. Preparedness for serious illnesses: impact of ethnicity, mistrust, perceived discrimination, and health communication. Am J Hospice Palliat Care 2021; 39: 104990912110368–471. DOI: 10.1177/10499091211036885.Google ScholarPubMed
Muscara, F, Burke, K, McCarthy, MC, et al. Parent distress reactions following a serious illness or injury in their child: a protocol paper for the take a Breath Cohort Study. BMC Psychiatry 2015; 8 15: 153. DOI: 10.1186/s12888-015-0519-5.CrossRefGoogle Scholar
Wall, RJ, Curtis, JR, Cooke, CR, Engelberg, RA. Family satisfaction in the ICU: differences between families of survivors and nonsurvivors. Chest. 2007; 132: 1425–1433.CrossRefGoogle ScholarPubMed
Walter, JK, Sachs, E, Schall, TE, et al. Interprofessional teamwork during family meetings in the pediatric cardiac intensive care unit. J Pain Symptom Manage. 2019; 57(6): 1089–1098. DOI: 10.1016/j.jpainsymman.2019.03.002.CrossRefGoogle ScholarPubMed
Michelson, KN, Frader, J, Charleston, E, et al. Navigate study investigators. A randomized comparative trial to evaluate a PICU navigator-based parent support intervention. Pediatr Crit Care Med 2020, 21(9): e617–e627. DOI: 10.1097/PCC.0000000000002378.CrossRefGoogle ScholarPubMed
White, DB, Angus, DC, Shields, AM, et al. A randomized trial of a family-support intervention in intensive care units. N Engl J Med 2018; 21: 2365–2375. DOI: 10.1056/NEJMoa1802637.CrossRefGoogle Scholar