Hostname: page-component-cd9895bd7-7cvxr Total loading time: 0 Render date: 2024-12-23T07:43:04.237Z Has data issue: false hasContentIssue false
  • English
  • Français

Diagnosis to death: family experiences of paediatric heart disease

Published online by Cambridge University Press:  24 August 2020

Kathryn Neubauer Open the ORCID record for Kathryn Neubauer [Opens in a new window] ,
Erin P. Williams ,
Pamela K. Donohue ,
Elliott M. Weiss ,
Mithya Lewis-Newby  and
Renee D. Boss
Kathryn Neubauer*
Affiliation:
Department of Pediatric Palliative Medicine, The Johns Hopkins Children’s Center, Baltimore, USA
Erin P. Williams
Affiliation:
Columbia University Irving Medical Center, Vagelos College of Physicians and Surgeons, New York, NY, USA The Berman Institute of Bioethics, Baltimore, MD, USA
Pamela K. Donohue
Affiliation:
Department of Pediatrics, The Johns Hopkins Children’s Center, Baltimore, MD, USA
Elliott M. Weiss
Affiliation:
Department of Pediatrics, Division of Neonatology, University of Washington School of Medicine, Treuman Katz Center for Pediatric Bioethics, Seattle Children’s Research Institute, Seattle, WA, USA
Mithya Lewis-Newby
Affiliation:
Divisions of Pediatric Cardiac Critical Care Medicine, University of Washington School of Medicine, Treuman Katz Center for Pediatric Bioethics, Seattle Children’s Research Institute, Seattle, WA, USA
Renee D. Boss
Affiliation:
Department of Pediatrics, Division of Neonatology, The Berman Institute of Bioethics, The Johns Hopkins Children’s Center, Baltimore, MD, USA
*
Address for Correspondence: Kathryn Neubauer, Johns Hopkins Children’s Center, Department of Pediatric Palliative Medicine, 200 North Wolfe Street, Rubenstein 2015, Baltimore, MD 21287, USA. Tel: +(410) 502-1943; Fax: 410 614 5360. E-mail: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

CHD remains one of the leading causes of mortality of children in the United States. There is limited research about the experience of parents from the diagnosis of their child with CHD through the death of their child. A prior study has shown that adults with heart failure go through a series of four transitions: 1) learning the diagnosis, 2) reframing the new normal, 3) taking control of the illness, and 4) understanding death is inevitable. In our qualitative study, we performed semi-structured interviews with parents who have a child die of CHD to determine whether the four transitions in adults apply to parents of children with CHD. We found that these four transitions were present in the parents we interviewed and that there were two novel transitions, one that proceeded the first Jones et al transition (“Prenatal diagnosis”) and one that occurred after the final Jones et al transition (“Adjustment after death”). It is our hope that identification of these six transitions will help better support families of children with CHD.

Keywords

Familychildrenheart diseasecommunicationdecision-makingend of lifepalliative care
Type
Original Article
Information
Cardiology in the Young , Volume 30 , Issue 11 , November 2020 , pp. 1672 - 1678
Check for updates
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

CDC. National Center on Birth Defects and Developmental Disabilities (NCBDDD). 2020. Retrieved from https://www.cdc.gov/ncbddd/ Google Scholar
Boneva, RS, Botto, LD, Moore, CA, Yang, Q, Correa, A, Erickson, JD. Mortality associated with congenital heart defects in the United States: Trends and racial disparities, 1979-1997. Circulation 2001; 103: 2376–2381. doi: 10.1161/01.CIR.103.19.2376 CrossRefGoogle ScholarPubMed
Hoffman, JIE, Kaplan, S, Liberthson, RR. Prevalence of congenital heart disease. Am Heart J 2004; 147: 425–439. doi: 10.1016/j.ahj.2003.05.003 CrossRefGoogle ScholarPubMed
Keane, J, Lock, J, Flyer, D. Nadas’ Pediatric Cardiology. Saunders Elsevier; 2006.Google Scholar
Morell, E, Wolfe, J, Scheurer, M, et al. Patterns of Care at End of Life in Children With Advanced Heart Disease. Arch Pediatr Adolesc Med 2012. doi: 10.1001/archpediatrics.2011.1829 CrossRefGoogle ScholarPubMed
Blume, ED, Balkin, EM, 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. doi: 10.1097/PCC.0000000000000072 CrossRefGoogle Scholar
Valdimarsdóttir, U, Kreicbergs, U, Hauksdóttir, A, et al. Parents’ intellectual and emotional awareness of their child’ s impending death to cancer: a population-based long-term follow-up study. Lancet Oncol 2007; 8: 706–714. doi: 10.1016/S1470-2045(07)70209-7 CrossRefGoogle Scholar
Jones, J, Nowels, CT, Sudore, R, Ahluwalia, S, Bekelman, DB. The Future as a Series of Transitions: Qualitative Study of Heart Failure Patients and Their Informal Caregivers. J Gen Intern Med 30: 176–182. doi: 10.1007/s11606-014-3085-5 CrossRefGoogle Scholar
Hsieh, HF, Shannon, SE. Three approaches to qualitative content analysis. Qual Health Res 2005; 15: 1277–1288. doi: 10.1177/1049732305276687 CrossRefGoogle ScholarPubMed
Meert, KL, Eggly, S, Pollack, M, et al. Parents’ perspectives on physician-parent communication near the time of a child’s death in the pediatric intensive care unit. Pediatr Crit Care Med 2008. doi: 10.1097/01.PCC.0000298644.13882.88 Google ScholarPubMed
Boss, RD, Lemmon, ME, Arnold, RM, Donohue, PK. Communicating prognosis with parents of critically ill infants: Direct observation of clinician behaviors. J Perinatol 2017. doi: 10.1038/jp.2017.118 CrossRefGoogle ScholarPubMed
Lemmon, ME, Donohue, PK, Parkinson, C, Northington, FJ, Boss, RD. Communication Challenges in Neonatal Encephalopathy. Pediatrics 2016; 138: e20161234–e20161234. doi: 10.1542/peds.2016-1234 CrossRefGoogle ScholarPubMed
Back, AL, Fromme, EK, Meier, DE. Training Clinicians with Communication Skills Needed to Match Medical Treatments to Patient Values. J Am Geriatr Soc 2019; 67: S435–S441. doi: 10.1111/jgs.15709 CrossRefGoogle ScholarPubMed
Mack, JW, Hilden, JM, Watterson, J, et al. Parent and Physician Perspectives on Quality of Care at the End of Life in Children With Cancer. J Clin Oncol 2005; 23. doi: 10.1200/JCO.2005.04.010 CrossRefGoogle ScholarPubMed
Mack, JW, Wolfe, J. Early integration of pediatric palliative care: for some children, palliative care starts at diagnosis. Curr Opin Pediatr 2006; 18: 10–14.CrossRefGoogle ScholarPubMed
Feudtner, C, Friebert, S, Jewell, J. Pediatric palliative care and hospice care commitments, guidelines, and recommendations. Pediatrics 2013; 132: 966–972. doi: 10.1542/peds.2013-2731 Google Scholar
Feudtner, C. Collaborative communication in pediatric palliative care : a foundation for problem-solving and decision-making. Pediatr Clin North Am 2007; 54: 583–607. doi: 10.1016/j.pcl.2007.07.008 CrossRefGoogle ScholarPubMed
Salgado, CL, Lamy, ZC, Vilela, R, et al. Pediatric cardiac surgery under the parents view: A qualitative study. Brazilian J Cardiovasc Surg 2010; 26: 36–42.CrossRefGoogle Scholar
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. doi: 10.1097/PCC.0000000000000076 CrossRefGoogle ScholarPubMed
October, TW, Dizon, ZB, Arnold, RM, Rosenberg, AR. Characteristics of physician empathetic statements during pediatric intensive care conferences with family members. JAMA Netw Open 2018; 1: e180351. doi: 10.1001/jamanetworkopen.2018.0351 CrossRefGoogle ScholarPubMed
Reder, EAK, Serwint, JR. Until the last breath. Arch Pediatr Adolesc Med 2009; 163: 653. doi: 10.1001/archpediatrics.2009.87 CrossRefGoogle ScholarPubMed
Lemmon, ME, Boss, RD, Donohue, PK, Williams, EP, Brandon, D, Ubel, PA. No question too small : development of a question prompt list for parents of critically ill infants. J Perinatol 2018: 386–391. doi: 10.1038/s41372-017-0029-z CrossRefGoogle ScholarPubMed
Kreicbergs, U, Valdimarsdóttir, U, Steineck, G, Henter, J. A population-based nationwide study of parents’ perceptions of a questionnaire on their child’s death due to cancer. Lancet 2004; 364: 787–789.CrossRefGoogle Scholar