Parents’ experiences of care following the loss of a baby at the margins between miscarriage, stillbirth and neonatal death: a UK qualitative study

Abstract

Objective To explore the healthcare experiences of parents whose baby died either before, during or shortly after birth between 20 +0 and 23 +6 weeks of gestation in order to identify practical ways to improve healthcare provision. Design Qualitative interview study. Setting England through two parent support organisations and four NHS Trusts. Sample A purposive sample of parents. Methods Thematic analysis of semi‐structured in‐depth narrative interviews. Main outcome measures Parents’ healthcare experiences. Results The key overarching theme to emerge from interviews with 38 parents was the importance of the terminology used to refer to the death of their baby. Parents who were told they were ‘losing a baby’ rather than ‘having a miscarriage’ were more prepared for the realities of labour, the birth experience and for making decisions around seeing and holding their baby. Appropriate terminology validated their loss, and impacted on parents’ health and wellbeing immediately following bereavement and in the longer term. Conclusion For parents experiencing the death of their baby at the margins between miscarriage, stillbirth and neonatal death, ensuring the use of appropriate terminology that reflects parents’ preferences is vital. This helps to validate their loss and prepare them for the experiences of labour and birth. Reflecting parents’ language preferences combined with compassionate bereavement care is likely to have a positive impact on parents’ experiences and improve longer‐term outcomes. Tweetable abstract Describing baby loss shortly before 24 weeks of gestation as a ‘miscarriage’ does not prepare parents for labour and birth, seeing their baby and making memories.

Men’s experiences and need for targeted support after termination of pregnancy for foetal anomaly: A qualitative study

“…However, hospital support was not universal and in a smaller number of cases seemed to be reliant on gestational age when parents’ grief is not necessarily governed by this (Brier, 2008; Obst et al, 2020b). Similar experiences have been identified in miscarriage research; compared to later‐gestation stillbirth, parents have reported lower levels of care and a lack of recognition for their baby (Emond et al, 2019; Smith et al, 2020). Regardless of the baby's gestational age, the birthing experience and care should be consistent and prioritise respect for the baby.…”

Australian fathers’ experiences of support following neonatal death: a need for better access to diverse support options

“…Given the exploratory nature of the research, interviews took a semistructured approach with open-ended questioning. Interview questions were developed based on previous pregnancy loss studies [26][27][28], including the findings of the larger research programme [25]. A pilot interview assessed the proposed interview schedules' suitability: no changes were required.…”

Factors Affecting the Emotional Wellbeing of Women and Men Who Experience Miscarriage in Hospital Settings: A Scoping Review

“…Seven studies had a distress protocol in place due to the sensitiveness of the topic [20,30,31,[46][47][48][49]. Conversely, twentythree did not mention if they had such protocol in place [21][22][23][24][25][26][27][28][29][32][33][34][35][36][37][38][39][40][41][42][43][44][45]. Sixteen studies declared they had no con ict of interest [20-22, 28, 29, 33, 36, 38, 41-44, 46-49] and fourteen did not mention this [23-26, 30-32, 34, 35, 37, 39, 40, 45, 49].…”