Liggins Institute, University of Auckland, Auckland, New Zealand.
School of Nursing, University of Auckland, Auckland, New Zealand.
BMC Health Serv Res. 2024 Aug 26;24(1):991. doi: 10.1186/s12913-024-11410-4.
Higher odds of survival have been reported in European infants compared to Indigenous Māori and Pasifika infants with critical congenital heart disease in New Zealand. We therefore aimed to understand how to mitigate this disparity by investigating the parent and healthcare professional experiences' of critical congenital heart disease healthcare in New Zealand.
A prospective qualitative study utilising semi-structured interviews was conducted on a cohort of purposefully sampled parents and health professionals with experience of critical congenital heart disease healthcare in New Zealand. Parents were recruited after a fetal critical congenital heart disease diagnosis and offered two interviews at least three months apart, whilst multidisciplinary fetal and cardiosurgical health professionals were interviewed once. Interviews were recorded and transcribed verbatim before coding, categorization and qualitative analysis.
During 2022 and 2023, 45 people participated in 57 interviews (25 parents: 19 mothers, 6 fathers; Indigenous Māori, n = 5; Pasifika, n = 6; Asian, n = 4; European, n = 10; and 20 healthcare professionals: European n = 17). The three lessons learned from participants were: (1) Minoritized groups experience disparate healthcare quality; (2) healthcare systems are under-resourced to provide equitable support for the differential needs of grieving parents; and (3) healthcare systems could engage minoritized families more optimally in shared decision-making.
According to the experiences of parents and healthcare professionals, persisting inequities in CCHD healthcare quality occur by ethnic group, with the New Zealand healthcare system privileging European families. The concepts from this study could be translated by healthcare leaders, policymakers, and professionals into evidence-based healthcare system improvements to enhance experiences for non-European families more broadly.
在新西兰，患有先天性心脏病的欧洲婴儿的存活率高于毛利裔和太平洋岛裔婴儿。因此，我们旨在通过调查新西兰先天性心脏病医疗保健中父母和医疗保健专业人员的经验，了解如何缩小这一差距。
采用前瞻性定性研究方法，对有先天性心脏病医疗保健经验的新西兰父母和医疗保健专业人员进行了一项有针对性的抽样研究。在胎儿被诊断为先天性心脏病后，对父母进行了招募，并至少进行了两次间隔至少三个月的访谈，而多学科胎儿和心脏外科医疗保健专业人员则进行了一次访谈。在进行编码、分类和定性分析之前，对访谈进行了录音和逐字记录。
在 2022 年和 2023 年期间，共有 45 人参与了 57 次访谈（25 名父母：19 名母亲，6 名父亲；毛利人，5 名；太平洋岛民，6 名；亚洲人，4 名；欧洲人，10 名；20 名医疗保健专业人员：欧洲人，17 名）。参与者从经验中总结出三个教训：（1）少数民族群体经历着不同的医疗质量；（2）医疗保健系统资源不足，无法为悲痛欲绝的父母提供差异化需求的平等支持；（3）医疗保健系统可以更优化地让少数民族家庭参与共同决策。
根据父母和医疗保健专业人员的经验，先天性心脏病医疗保健质量的持续不平等是按族裔群体划分的，新西兰医疗保健系统更倾向于欧洲家庭。本研究的概念可以由医疗保健领导者、政策制定者和专业人员转化为循证医疗保健系统改进，以更广泛地改善非欧洲家庭的体验。
