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

Publication ,  Journal Article
Delaney, RK; Pinto, NM; Ozanne, EM; Brown, H; Stark, LA; Watt, MH; Karasawa, M; Patel, A; Donofrio, MT; Steltzer, MM; Miller, SG; Zickmund, SL ...
Published in: Cardiol Young
June 2022

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

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Published In

Cardiol Young

DOI

EISSN

1467-1107

Publication Date

June 2022

Volume

32

Issue

6

Start / End Page

896 / 903

Location

England

Related Subject Headings

  • Quality of Life
  • Pregnancy
  • Parents
  • Male
  • Infant, Newborn
  • Humans
  • Heart Defects, Congenital
  • Fetus
  • Female
  • Decision Making
 

Citation

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Chicago
ICMJE
MLA
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Delaney, R. K., Pinto, N. M., Ozanne, E. M., Brown, H., Stark, L. A., Watt, M. H., … Fagerlin, A. (2022). Parents' decision-making for their foetus or neonate with a severe congenital heart defect. Cardiol Young, 32(6), 896–903. https://doi.org/10.1017/S1047951121003218
Delaney, Rebecca K., Nelangi M. Pinto, Elissa M. Ozanne, Heather Brown, Louisa A. Stark, Melissa H. Watt, Michelle Karasawa, et al. “Parents' decision-making for their foetus or neonate with a severe congenital heart defect.Cardiol Young 32, no. 6 (June 2022): 896–903. https://doi.org/10.1017/S1047951121003218.
Delaney RK, Pinto NM, Ozanne EM, Brown H, Stark LA, Watt MH, et al. Parents' decision-making for their foetus or neonate with a severe congenital heart defect. Cardiol Young. 2022 Jun;32(6):896–903.
Delaney, Rebecca K., et al. “Parents' decision-making for their foetus or neonate with a severe congenital heart defect.Cardiol Young, vol. 32, no. 6, June 2022, pp. 896–903. Pubmed, doi:10.1017/S1047951121003218.
Delaney RK, Pinto NM, Ozanne EM, Brown H, Stark LA, Watt MH, Karasawa M, Patel A, Donofrio MT, Steltzer MM, Miller SG, Zickmund SL, Fagerlin A. Parents' decision-making for their foetus or neonate with a severe congenital heart defect. Cardiol Young. 2022 Jun;32(6):896–903.
Journal cover image

Published In

Cardiol Young

DOI

EISSN

1467-1107

Publication Date

June 2022

Volume

32

Issue

6

Start / End Page

896 / 903

Location

England

Related Subject Headings

  • Quality of Life
  • Pregnancy
  • Parents
  • Male
  • Infant, Newborn
  • Humans
  • Heart Defects, Congenital
  • Fetus
  • Female
  • Decision Making