ABSTRACT
AIMS: To map the pathway and service provision for pregnant women whose newborns require admission into the surgical neonatal intensive care unit at or soon after birth, and to examine the nature of continuity of care (COC) provided and the facilitators and barriers to woman- and family-centred care from the perspective of women/parents and health professionals. BACKGROUND: Limited research exists on current service and care pathways for families whose babies are diagnosed with congenital abnormality requiring surgery. DESIGN: A mixed method sequential design adhering to EQUATOR guidelines for Good Reporting of a Mixed Methods Study. METHODS: Data collection methods included: (1) a workshop with health professionals (n = 15), (2) retrospective maternal record review (n = 20), prospective maternal record review (17), (3) interviews with pregnant women given a prenatal diagnosis of congenital anomaly (n = 17) and (4) interviews with key health professionals (n = 7). RESULTS/FINDINGS: Participants perceived care delivered by state-based services as problematic prior to admission into the high-risk midwifery COC model. Once admitted to the high-risk maternity team women described care 'like a breath of fresh air' with a 'contrast in support', where they felt supported in their decisions. CONCLUSION: This study highlights provision of COC, in particular relational continuity between health providers and women as essential to achieve optimal outcomes. RELEVANCE TO CLINICAL PRACTICE: Provision of individualised COC offers an opportunity for perinatal services to reduce the negative consequences of pregnancy-related stress associated with diagnosis of foetal anomaly. PATIENT OR PUBLIC CONTRIBUTION: No patient or public was involved in the design, analysis, preparation or writing of this review.