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Parents’ decision-making for their foetus or neonate with a severe congenital heart defect

Published online by Cambridge University Press:  19 August 2021

Rebecca K. Delaney
Department of Population Health Sciences, University of Utah, Salt Lake City, UT, USA
Nelangi M. Pinto
Division of Pediatric Cardiology, Department of Pediatrics, University of Utah, Salt Lake City, UT, USA
Elissa M. Ozanne
Department of Population Health Sciences, University of Utah, Salt Lake City, UT, USA
Heather Brown
Center for Clinical and Translational Science, University of Utah, Salt Lake City, UT, USA
Louisa A. Stark
Center for Clinical and Translational Science, University of Utah, Salt Lake City, UT, USA Department of Human Genetics, University of Utah, Salt Lake City, UT, USA
Melissa H. Watt
Department of Population Health Sciences, University of Utah, Salt Lake City, UT, USA
Michelle Karasawa
Department of Population Health Sciences, University of Utah, Salt Lake City, UT, USA
Angira Patel
Division of Cardiology, Ann & Robert H. Lurie Children’s Hospital of Chicago, Northwestern University Feinberg School of Medicine, Chicago, IL, USA
Mary T. Donofrio
Division of Cardiology, George Washington University, Children’s National Hospital, Washington, DC, USA
Michelle M. Steltzer
Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL, USA
Stephen G. Miller
Department of Pediatrics, Division of Pediatric Cardiology, Duke University Medical Center, Durham, NC, USA
Susan L. Zickmund
VA HSR&D Informatics, Decision-Enhancement and Analytic Sciences Center, VA Salt Lake City Health Care System, Salt Lake City, UT, USA Division of Epidemiology, Department of Internal Medicine, University of Utah, Salt Lake City, UT, USA
Angela Fagerlin*
Department of Population Health Sciences, University of Utah, Salt Lake City, UT, USA VA HSR&D Informatics, Decision-Enhancement and Analytic Sciences Center, VA Salt Lake City Health Care System, Salt Lake City, UT, USA
Author for correspondence: Dr A. Fagerlin, Department of Population Health Sciences, University of Utah, 295 Chipeta Way, Salt Lake City, UT 84108, USA. Tel: +1 (801) 587-0049. E-mail:



Parents who receive a diagnosis of a severe, life-threatening CHD for their foetus or neonate face a complex and stressful decision between termination, palliative care, or surgery. Understanding how parents make this initial treatment decision is critical for developing interventions to improve counselling for these families.


We conducted focus groups in four academic medical centres across the United States of America with a purposive sample of parents who chose termination, palliative care, or surgery for their foetus or neonate diagnosed with severe CHD.


Ten focus groups were conducted with 56 parents (Mage = 34 years; 80% female; 89% White). Results were constructed around three domains: decision-making approaches; values and beliefs; and decision-making challenges. Parents discussed varying approaches to making the decision, ranging from relying on their “gut feeling” to desiring statistics and probabilities. Religious and spiritual beliefs often guided the decision to not terminate the pregnancy. Quality of life was an important consideration, including how each option would impact the child (e.g., pain or discomfort, cognitive and physical abilities) and their family (e.g., care for other children, marriage, and career). Parents reported inconsistent communication of options by clinicians and challenges related to time constraints for making a decision and difficulty in processing information when distressed.


This study offers important insights that can be used to design interventions to improve decision support and family-centred care in clinical practice.

Original Article
© The Author(s), 2021. Published by Cambridge University Press

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Hoffman, JIE, Kaplan, S. The incidence of congenital heart disease. J Am Coll Cardiol 2002; 39: 18901900.CrossRefGoogle ScholarPubMed
Reller, MD, Strickland, MJ, Riehle-Colarusso, T, Mahle, WT, Correa, A. Prevalence of congenital heart defects in metropolitan Atlanta, 1998-2005. J Pediatr 2008; 153: 807813.CrossRefGoogle Scholar
Oster, ME, Lee, KA, Honein, MA, Riehle-Colarusso, T, Shin, M, Correa, A. Temporal trends in survival among infants with critical congenital heart defects. Pediatrics 2013; 131: e1502e1508.CrossRefGoogle ScholarPubMed
Best, KE, Rankin, J. Long-Term survival of individuals born with congenital heart disease: a systematic review and meta-analysis. J Am Heart Assoc 2016; 5: 1208.CrossRefGoogle ScholarPubMed
Kamphuis, M, Ottenkamp, J, Vliegen, HW, et al. Health related quality of life and health status in adult survivors with previously operated complex congenital heart disease. Heart 2002; 87: 356362.CrossRefGoogle ScholarPubMed
Mellion, K, Uzark, K, Cassedy, A, et al. Health-related quality of life outcomes in children and adolescents with congenital heart disease. J Pediatr 2014; 164: 781788.e781.CrossRefGoogle ScholarPubMed
Schaefer, C, von Rhein, M, Knirsch, W, et al. Neurodevelopmental outcome, psychological adjustment, and quality of life in adolescents with congenital heart disease. Dev Med Child Neurol 2013; 55: 11431149.CrossRefGoogle ScholarPubMed
Barron, DJ, Kilby, MD, Davies, B, Wright, JGC, Jones, TJ, Brawn, WJ. Hypoplastic left heart syndrome. Lancet 2009; 374: 551564.CrossRefGoogle ScholarPubMed
Bertaud, S, Lloyd, DFA, Laddie, J, Razavi, R. The importance of early involvement of paediatric palliative care for patients with severe congenital heart disease. Arch Dis Child 2016; 101: 984987.CrossRefGoogle ScholarPubMed
Chenni, N, Lacroze, V, Pouet, C, et al. Fetal heart disease and interruption of pregnancy: factors influencing the parental decision-making process. Prenat Diagn 2012; 32: 168172.CrossRefGoogle ScholarPubMed
Zeigler, VL. Pediatric ethics, issues, & commentary. Ethical principles and parental choice: treatment options for neonates with hypoplastic left heart syndrome. Pediatr Nurs 2003; 29: 6569.Google Scholar
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: e004862.CrossRefGoogle ScholarPubMed
Uzark, K, Jones, K. Parenting stress and children with heart disease. J Pediatr Health Care 2003; 17: 163168.CrossRefGoogle ScholarPubMed
Kolaitis, GA, Meentken, MG, Utens, EMWJ. Mental health problems in parents of children with congenital heart disease. Front Pediatr 2017; 5: 102.CrossRefGoogle ScholarPubMed
Lawoko, S, Soares, JJF. Distress and hopelessness among parents of children with congenital heart disease, parents of children with other diseases, and parents of healthy children. J Psychosom Res 2002; 52: 193208.CrossRefGoogle ScholarPubMed
McMahon, E, Chang, Y-S. From surviving to thriving - parental experiences of hospitalised infants with congenital heart disease undergoing cardiac surgery: a qualitative synthesis. J Pediatr Nurs 2020; 51: 3241.CrossRefGoogle ScholarPubMed
Bratt, E-L, Järvholm, S, Ekman-Joelsson, B-M, Mattson, L-Å., Mellander, M. Parent’s experiences of counselling and their need for support following a prenatal diagnosis of congenital heart disease - a qualitative study in a Swedish context. BMC Pregnancy Childbirth 2015; 15: 17.CrossRefGoogle Scholar
Ellinger, MK, Rempel, GR. Parental decision making regarding treatment of hypoplastic left heart syndrome. Adv Neonatal Care 2010; 10: 316322.CrossRefGoogle ScholarPubMed
Rempel, GR, Cender, LM, Lynam, MJ, Sandor, GG, Farquharson, D. Parentsʼ perspectives on decision making after antenatal diagnosis of congenital heart disease. J Obstet Gynecol Neonatal Nurs 2004; 33: 6470.CrossRefGoogle ScholarPubMed
Giacomini, MK, Cook, DJ. Usersʼ guides to the medical literature: XXIII. Qualitative research in health care A. Are the results of the study valid? Evidence-based Medicine Working Group. JAMA 2000; 284: 357362.CrossRefGoogle Scholar
Kitzinger J. Qualitative research. Introducing focus groups. BMJ 1995; 311: 299302.CrossRefGoogle Scholar
Lederman, LC. Assessing educational effectiveness: the focus group interview as a technique for data collection. Commun Educ 1990; 39: 117127.CrossRefGoogle Scholar
Namey, E, Guest, G, McKenna, K, Chen, M. Evaluating bang for the buck: a Cost-Effectiveness comparison between individual interviews and focus groups based on thematic saturation levels. Am J Eval 2016; 37: 425440.CrossRefGoogle Scholar
Guest, G, Namey, E, McKenna, K. How many focus groups are enough? building an evidence base for nonprobability sample sizes. Field Methods 2017; 29: 322.CrossRefGoogle Scholar
Barriball, KL, While, A. Collecting data using a semi-structured interview: a discussion paper. J Adv Nurs 1994; 19: 328335.CrossRefGoogle ScholarPubMed
Kallio, H, Pietilä, AM, Johnson, M, Kangasniemi, M. Systematic methodological review: developing a framework for a qualitative semi-structured interview guide. J Adv Nurs 2016; 72: 29542965.CrossRefGoogle ScholarPubMed
Guest, G, Bunce, A, Johnson, L. How many interviews are enough? an experiment with data saturation and variability. Field Methods 2006; 18: 5982.CrossRefGoogle Scholar
Crabtree, BF, Miller, WL. Doing qualitative research. Sage Publications, Inc, Thousand Oaks, CA, 1992.Google Scholar
Tracy, SJ. Qualitative quality: eight, Big-Tent, criteria for excellent qualitative research. Qual Inq 2010; 16: 837851.CrossRefGoogle Scholar
Stanovich, KE, West, RF. Reasoning independently of prior belief and individual differences in actively open-minded thinking. J Educ Psychol 1997; 89: 342357.CrossRefGoogle Scholar
Evans, JSBT. In two minds: dual-process accounts of reasoning. Trends Cogn Sci 2003; 7: 454.CrossRefGoogle Scholar
Scott, SG, Bruce, RA. Decision-making style: the development and assessment of a new measure. Educ Psychol Meas 1995; 55: 818.CrossRefGoogle Scholar
Delaney, R, Strough, J, Parker, AM, Bruine de Bruin, W. Variations in decision-making profiles by age and gender: a cluster-analytic approach. Pers Individ Diff 2015; 85: 1924.CrossRefGoogle ScholarPubMed
Miller, SM, Fang, CY, Diefenbach, MA, Bales, CB. Tailoring psychosocial interventions to the individual’s health information-processing style: The influence of monitoring versus blunting in cancer risk and disease. In: Baum, A, Andersen, BL (eds). Psychosocial Interventions for Cancer. American Psychological Association, Washington, DC, 2001, p. 343362.CrossRefGoogle Scholar
Charles, C, Gafni, A, Whelan, T. Shared decision-making in the medical encounter: What does it mean? (Or it takes at least two to tango). Soc Sci Med 1997; 44: 681692.CrossRefGoogle Scholar
Kon, AA, Ackerson, L, Lo, B. How pediatricians counsel parents when no "best-choice" management exists: lessons to be learned from hypoplastic left heart syndrome. Arch Pediatr Adolesc Med 2004; 158: 436441.CrossRefGoogle ScholarPubMed
Lee-Poy, M, Stewart, M, Ryan, BL, Brown, JB. Asking patients about their religious and spiritual beliefs: cross-sectional study of family physicians. Can Fam Physician 2016; 62: e555e561.Google ScholarPubMed
Connor, JA, Kline, NE, Mott, S, Harris, SK, Jenkins, KJ. The meaning of cost for families of children with congenital heart disease. J Pediatr Health Care 2010; 24: 318325.10.1016/j.pedhc.2009.09.002CrossRefGoogle 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.CrossRefGoogle ScholarPubMed
Fagerlin, A, Pignone, M, Abhyankar, P, et al. Clarifying values: an updated review. BMC Med Inform Decis Mak 2013; 13: 17.CrossRefGoogle Scholar
Witteman, HO, Gavaruzzi, T, Scherer, LD, et al. Effects of design features of explicit values clarification methods: a systematic review. Med Decis Mak 2016; 36: 760776.CrossRefGoogle ScholarPubMed
Braun, LT, Grady, KL, Kutner, JS, et al. Palliative care and cardiovascular disease and stroke: a policy statement from the American Heart Association/American Stroke Association. Circulation 2016; 134: e198e225.CrossRefGoogle ScholarPubMed
Prsa, M, Holly, CD, Carnevale, FA, Justino, H, Rohlicek, CV. Attitudes and practices of cardiologists and surgeons who manage HLHS. Pediatrics 2010; 125: e625e630.CrossRefGoogle ScholarPubMed
Rychik, J. What does palliative care mean in prenatal diagnosis of congenital heart disease? World J Pediatr Congenit Heart Surg 2013; 4: 8084.CrossRefGoogle ScholarPubMed
Austin, CA, Mohottige, D, Sudore, RL, Smith, AK, Hanson, LC. Tools to promote shared decision making in serious illness: a systematic review. JAMA Intern Med 2015; 175: 12131221.CrossRefGoogle ScholarPubMed
May, R, Thompson, J. The role of pediatric palliative care in complex congenital heart disease: three illustrative cases. J Palliat Med 2017; 20: 13001303.CrossRefGoogle ScholarPubMed
Keele, L, Keenan, HT, Sheetz, J, Bratton, SL. Differences in characteristics of dying children who receive and do not receive palliative care. Pediatrics 2013; 132: 7278.CrossRefGoogle Scholar
Feudtner, C, Kang, TI, Hexem, KR, et al. Pediatric palliative care patients: a prospective multicenter cohort study. Pediatrics 2011; 127: 10941101.CrossRefGoogle ScholarPubMed
DeSteno, D, Gross, JJ, Kubzansky, L. Affective science and health: the importance of emotion and emotion regulation. Health Psychol 2013; 32: 474486.CrossRefGoogle ScholarPubMed
Hanschmidt, F, Linde, K, Hilbert, A, Riedel- Heller, SG, Kersting, A. Abortion stigma: a systematic review. Perspect Sex Reproduct Health 2016; 48: 169177.CrossRefGoogle ScholarPubMed
Pinto, NM, Weng, C, Sheng, X, et al. Modifiers of stress related to timing of diagnosis in parents of children with complex congenital heart disease. J Matern Fetal Neonatal Med 2016; 29: 33403346.CrossRefGoogle ScholarPubMed
Kaplowitz, MD, Hoehn, JP. Do focus groups and individual interviews reveal the same information for natural resource valuation? Ecol Econ 2001; 36: 237247.CrossRefGoogle Scholar
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