Abstract
BACKGROUND: Most research on women experiencing stillbirth relies on online user group surveys or qualitative interviews. The objective of this study was to investigate the experience of women who are at a higher risk of stillbirth, living in areas of greatest deprivation, and are commonly not well represented. METHODS: This study used birth and death registrations in 2012-2013 to identify a sample of mothers whose babies had died as a result of stillbirth. These women were sent a survey 6-9 months after the stillbirth. We undertook descriptive analysis of quantitative data and used binary logistic regression with the Index of Multiple Deprivation as a measure of disadvantage. We used thematic analysis to describe free text responses. RESULTS: The survey response rate was 30% (N = 473). Ethnic minority, younger age, and single parenthood were associated with disadvantage. Women residents in the most deprived areas perceived care more negatively: during labor they were significantly less likely to be spoken to by medical staff so they could understand (73% compared with 90%, adjusted odds ratio [aOR] 0.33 [95% confidence interval {CI} 0.18-0.65]), or treated with respect by midwives (79% compared with 90%, aOR 0.41 [95% CI 0.22-0.77]). The qualitative themes identified were: "Difficulty in accessing care," "More could have been done," "Ineffective communication," and "Cared for and not cared for" which support the quantitative findings. CONCLUSION: Women living in the most deprived areas reported poorer experiences of care compared with more advantaged women. All women need compassionate and sensitive care around the time of a stillbirth.