Road to hope through grief: A qualitative mixed methods study investigating stillbirth bereavement support pathways for ethnically diverse bereaved parents

Stillbirth is a silent public health crisis that affects families across the UK. According to a recent NHS figure, one in every 250 births ended in stillbirth, which is approximately eight babies every day (NHS, 2021). While preventative measures have been put into place reducing this silent epidemic, much more action is needed to decrease the number of families experiencing child loss. Year after year, reports (Woods & Heazell, 2018; RCOG, 2020; Widdows et al., 2021) show the national stillbirth rates decrease, however, the stillbirth rate among Black and Asian communities continues to remain particularly high compared to white British families (Garcia et al., 2015; MBRRACE, 2021). Despite the documented disparity of perinatal loss between white British and minority ethnic communities, there is a lack of evidence documenting the best and preferred means to support Black, Asian, and Minority Ethnic bereaved families. It is clear that more research is needed to better support minority ethnic families as they grieve the loss of a child and the loss of a future they planned (Campbell-Jackson & Horsch, 2014). Whilst it is important to remember that there will be shared bereavement experiences amongst stillbirth bereaved parents regardless of ethnicity (Garcia et al., 2020), it is imperative to identify how to provide culturally competent bereavement support (Shaw, 2013; Rogers & Greenfields, 2017).

Many baby loss charities across the country have implemented bereavement support programming which may include peer-to-peer support groups and befriending programmes in person and online (Killeen, 2015; Mills et al., 2016; Smith et al., 2020). Despite bereavement support being available across the UK in different formats, not all stillbirth bereaved parents access opportunities provided by these organisations. Within the current literature, it appears that minority ethnic parents are less likely to access this type of bereavement support due to the noticeable gap between minority ethnic parent and white parent participation within the baby loss bereavement support research (Cacciatore, 2007; Kingdon et al., 2019; Garcia et al., 2020). Often parents from minority ethnic communities are underrepresented or go underreported within the literature (Downe et al., 2013; Murphy & Cacciatore, 2017; Heazell et al., 2021). The paucity of research representing minority ethnic bereaved parents’ experiences fails to recognise the diverse the narratives of baby loss are within different communities who are high risk for perinatal loss (ONS, 2021; MBRRACE, 2021). The aim of this study is to explore how parents from different ethnic communities seek support through befriending programmes and peer support groups and to examine their experiences in selecting the group that is the most appropriate to support them along their grief journey. This project will also highlight barriers felt by parents that lead to them deciding to not engage with peer-to-peer support.

To carry out this work, I follow a Transformative Paradigm (TP) theoretical framework (Mertens, 2007; 2008; 2010; 2011; 2012; 2017) from which the methodology arises. TP emphasizes the link between social research and action which calls upon research to further investigate social inequity and social justice (Mertens, 2008). Therefore, TP is an appropriate framework from which to explore the experiences of stillbirth in minority communities. I am using a double qualitative mixed methods approach to collect data for this study which involves a core component and a supplementary component (Morse & Niehaus, 2009). Triangulation of qualitative data through different approaches may generate more significant findings compared to a study employing a single method (Briller et al., 2008). The core component project consists of 16 semi-structured interviews with bereaved parents who self-identify as belonging to minority ethnic communities. I use constructivist grounded theory (Charmaz, 2006; 2014) to generate a theory as to why there’s such a disparity between minority ethnic families accessing bereavement support (Murray, 2020).

The secondary component features creative methods approach by facilitating the creation of collages by eight participants analysed through thematic analysis. The purpose of incorporating these different research methods is to generate rich data which will better answer the research question highlight the difference of data that is spoken and that which is visually created (Chilton & Scotti, 2014; Yuen, 2018; Dutton et al., 2019). Themes from the collages are discussed and are applied to the generated theory.

Findings from the interviews and collages contributed to the development of the Road to Hope through Grief (RTHTG) theory. This grounded theory explores the experiences reported by the sixteen bereaved parents who participated in the study. Themes constructed from the semi-structured interviews and the collage-making activity generated the six phased theory. The RTHTG theory aims to illustrate a general pathway for minority ethnic bereaved parents’ grief journeys progress from the initial loss of their baby to seeking out support and participating in peer support groups. Furthermore, it suggests ways in which parents further away from acute grief engage with peer support groups and find meaningful ways to participate in leadership and civic opportunities related to their experience of baby loss.

I examine my positionality in this research through collage as a reflexive exercise, documenting my experience of grief and loss during my PhD. Throughout the duration of collecting data, I created a series of collages that reflect my experience as a researcher who has experienced personal bereavement and loss during my studies. Incorporating an autoethnographic lens to this project has facilitated a deeper rapport with the research participants and with the topic (Ellis & Bochner, 2000; Ellis, 2009; Ngunjiri Hernandez, & Chang, 2010).