Understanding the Bereavement Experiences of Pakistani Women following Infant Mortality

Introduction: The death of an infant is a source of profound grief (Boyle, 1997). Reactions to and adjustments following the loss are often connected with the social, cultural and political position of the mother (Boone, 1985). West African, Caribbean, Pakistani and Bangladeshi women, have been reported to experience the highest rate of infant mortality in the UK (ONS, 2014b). Dominant narratives of infant mortality revolve around genetic and individual lifestyle factors (Bundey, Alam, Kaur, Mir, & Lancashire, 1991; Parslow et al., 2009), with little exploration of the impact of this narrative on grieving minority women. In addition existing models of grief highlight a linear process involving dynamic progression through phases (Kubler-Ross & Kessler, 2005) or more recently the concept of ‘continuing bonds’ has emerged (Klass, Silverman, & Nickman, 2014). However little is known about the bereavement experience of Pakistani women, despite them experiencing the highest rates of infant mortality. Method: Seven bereaved Pakistani women were interviewed about their experiences of infant mortality, using the Biographic Narrative Interview Method. Drawing on feminist and social critical narrative inquiry. the focus was on exploring how Pakistani women make sense of the loss and how their experiences and meaning-making are linked to social, cultural and political structures and discourses. The data was analysed using Framework Analysis. In addition, individual narrative portraits were developed for each woman. Results: Six main narratives were identified from the group analysis. Pakistani women’s experience of infant mortality involved the telling of ‘uncertain’, ‘powerless’, ‘grief’ and ‘transformative’ narratives. Women demonstrated the interconnection between power, uncertainty, grief and transformation. Feeling powerless and uncertain exacerbated their grief whereas feeling empowered and supported to bring about change helped their grief to heal. Women also demonstrated that ‘sense-making’ was a key part of their bereavement experience, which was influenced by stories of blame, times when women noticed inconsistencies and their religion. Pakistani women’s bereavement experience was timeless and linked to their racial and religious position. Finally ‘meeting our needs’ included reflecting on the care that they received and how services could better meet their needs, particularly around the provision of psychological support, chaplaincy, specialist language support and BME women’s involvement in decision making bodies in services. Discussion: The research highlights how Pakistani women challenge the master narratives of pregnancy and infant mortality. Their experiences of loss and bereavement can be similar as well as different from dominant discourses of loss, as well as more complex and uncertain than some traditional Western models of grief. The study highlights the importance of considering the racial, gendered and religious position of minority women as they navigate health services following infant mortality. The research also indicates the importance of culturally sensitive psychological support post bereavement.