ECHO study information for clinicians and midwives
Why do outcomes of critical congenital heart disease in New Zealand differ by ethnicity?
The ECHO study: Examining Congenital Heart Outcomes
Project overview
Despite a universal public health care system in New Zealand, health outcomes differ significantly by ethnicity. Māori and Pacific babies die of life-threatening congenital heart conditions more often than their European counterparts. These are rare, but important, diagnoses which require life-saving medical treatment shortly after birth.
This research seeks to investigate and understand why this difference in outcome occurs. We will review national population data about the mother, baby and treatment plan from diagnosis in pregnancy to after birth to identify factors within these domains associated with outcome. We will interview families/ whānau and health care workers involved in caring for these babies to understand their experience of critical congenital heart disease (CCHD) diagnosis, treatment plan formulation and the journey through that plan.
Our research aims to inform future health practices to improve equitable outcomes for Māori and Pacific babies born with CCHD, as well as the whānau experience.
Eligibility
Inclusion criteria
- Antenatal diagnosis of critical congenital cardiac disease
Exclusion criteria
- Post-natal diagnosis of critical congenital cardiac disease
- Cardiac diagnoses not part of the critical congenital cardiac disease spectrum
What does participation in the study involve for families?
Two one-hour interviews, exploring the family's experience of receiving the diagnosis of a heart problem in their child. These will either be by video-conference call or face-to-face at a time and place of the family's choosing. Whānau / family support are welcome to attend.
Please refer to the participant information sheet in the whānau / family’s preference language at the bottom of this page.