Support after stillbirth: Findings from the Parent Voices Initiative Global Registry Project

Abstract

The need for respectful bereavement care following a stillbirth has been poorly recognised within global public health initiatives. To date, there has been no comprehensive cataloguing of providers that support parents after stillbirth, nor any review of the challenges they face. We aimed to identify providers (organisations and point persons) that support bereaved parents worldwide and to investigate the challenges they face. A systematic global online search was conducted to identify providers of support after stillbirth. Subsets of providers were surveyed and interviewed. These were purposively sampled to achieve diversity in geography, organisation size and point person role. Challenges in providing support in six key areas – stigma, funding, reach, policy, workforce, and advocacy – were analysed thematically. Overall, 621 providers from 75 countries were identified. No support providers were identified in 123 countries, and in the 6 countries that carry almost half of the global burden of stillbirths, only 8 support providers were found. Support providers faced challenges in accessing funding, reaching key populations, and training and retaining staff, while complex policies hampered bereavement care. Support providers were challenged by silence and stigma around stillbirth. Overcoming these challenges requires collaboration, effort, and political will at local and international scales.