Parents' decision-making for their foetus or neonate with a severe congenital heart defect.
Journal Article (Journal Article)
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.
Full Text
Duke Authors
Cited Authors
- 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
Published Date
- August 19, 2021
Published In
Start / End Page
- 1 - 8
PubMed ID
- 34407894
Pubmed Central ID
- PMC8857292
Electronic International Standard Serial Number (EISSN)
- 1467-1107
Digital Object Identifier (DOI)
- 10.1017/S1047951121003218
Language
- eng
Conference Location
- England