The experience of Sudden Unexpected Deaths in Infancy (SUDI) in socially vulnerable families in Queensland

Background: Widening social inequalities are a noted feature of the epidemiology of SUDI. An increasing proportion of SUDI now occur among families experiencing issues including substandard housing, unemployment, substance abuse, multiple partners and domestic violence. Preliminary analysis from an 11-year retrospective cohort study of SUDI in Queensland indicates that families’ experience of vulnerability impacts on infant care in more complex ways than can be addressed by a blanket approach to safe sleeping education. To date, no Australian studies have specifically investigated the social environments of SUDI infants. Attempts to tell the SUDI story from the perspective of the vulnerable parent are also noticeably lacking from Australian and international research. The qualitative value of narrative records, including coronial records, has been well recognised in other areas of death prevention. There have been no qualitative studies of SUDI using narrative records to examine the wider social context of the infant death and/or parents’ perspectives and experiences. Objectives: To explore the wider social context in which SUDI in socially vulnerable families occur, and to examine the perspectives and experiences of those connected to the event (i.e. parents and caregivers). Methods: This was the second phase of a large mixed methods study involving retrospective analysis of all SUDI in Queensland between 2004-2014. The study design was a qualitative content analysis of witness statements from socially vulnerable parents, provided in the course of a coronial investigation. Preliminary findings are presented as case study analyses of two SUDI. This provided a rich and detailed account of the different experiences and perspectives of socially vulnerable families who experience a SUDI in a way that is different from, yet complimentary to, the knowledge obtained through quantitative analysis. Results: The two cases discussed were families from different backgrounds and different places, linked by the sudden, unexpected death of an infant, and by complex needs and stress factors that acted as barriers to family functioning. Through the use of case study, this paper highlights the multifaceted vulnerability that may be experienced by SUDI families. This paper also demonstrates that while there are considerable similarities in the issues faced by socially vulnerable families, there are also notable differences, both in their individual circumstances and their engagement with and use of health services. Points where the reach of existing services might possibly have been extended to both build on the strengths, and respond to the risks, inherent in each family dynamic are also explored. Conclusions: Narrative approaches have been used to provide a rich and detailed account of the subjective experience of a SUDI, and the ways in which social vulnerability may impact on families’ infant care practices. This case study approach provided a number of contextual factors that would have been likely to influence the effectiveness of routine safe sleeping education, which would not have been obtained from quantitative methods alone. In this context, qualitative analysis of death story narratives may provide a new understanding of infant deaths in socially vulnerable families