Parents' Decision-Making for their Foetus or Neonate with a Severe Congenital Heart Defect

Title

Parents' Decision-Making for their Foetus or Neonate with a Severe Congenital Heart Defect

Creator

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

Publisher

Cardiology in the Young

Date

2022

Subject

Adult; Child; Congenital; Decision-making; Female; Fetus; Heart Defects; Humans; Infant; Male; Newborn; Parents; Pregnancy; Psychology; Qualitative Research

Description

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 (M(age) = 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.

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Citation List Month

November 2022 List

Collection

Citation

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,” Pediatric Palliative Care Library, accessed May 29, 2024, https://pedpalascnetlibrary.omeka.net/items/show/18563.