A document by Bethany Atkins. Click on the document to view its contents.

Background 98% of neonatal deaths worldwide occur in low- and middle-income countries (LMICs), yet there is little bereavement care guidance available for these settings. Objectives To explore parents’, families’ and healthcare professionals’ experiences of care after neonatal death in healthcare facilities in LMICs. Search Strategy and Selection Criteria Four databases were searched for peer-reviewed literature meeting the inclusion criteria of qualitative studies exploring the experiences of people who provided or received bereavement care following neonatal death in a LMIC healthcare setting. Data Collection and Analysis Data were collected by two independent reviewers, collated through line-by-line coding then reciprocal and refutational translation, and analysed through Noblit and Hare’s seven-step meta-ethnography approach to create first, second and third order themes. Main Results Seven first order themes extracted from the literature included emotional responses, social relationships, staff and systems, religion, connecting with the baby, coping strategies, and economic concerns. From these data, three third order themes arose; the individual, the healthcare setting, and the community/ context. Conclusions Over-arching themes in bereavement care shape grief responses and are often similar across geographical locations. Analysing these similarities allows a deeper understanding of the important elements of bereavement care and may be helpful to inform the creation of high quality, bereavement care guidelines suitable for use in LMIC settings.

Background A core outcome set could address inconsistent outcome reporting and improve evidence for stillbirth care research, which has been identified as an important research priority. Objectives To identify outcomes and outcome measurement instruments reported by studies evaluating interventions after the diagnosis of a stillbirth. Search strategy Amed, BNI, CINAHL, ClinicalTrials.gov, Cochrane Central Register of Controlled Trials, Cochrane Database of Systematic Reviews, Embase, MEDLINE, PsycINFO, and WHO ICTRP from 1998 to August 2021. Selection criteria Randomised and non-randomised comparative or non-comparative studies reporting a stillbirth care intervention. Data collection and analysis Interventions, outcomes reported, definitions and outcome measurement tools were extracted. Main results 40 randomised and 200 non-randomised studies were included. 58 different interventions were reported, labour and birth care (52 studies), hospital bereavement care (28 studies), clinical investigations (116 studies), care in a multiple pregnancy (2 studies), psychosocial support (28 studies) and care in a subsequent pregnancy (14 studies). 391 unique outcomes were reported and organised into 14 outcome domains: labour and birth; postpartum; delivery of care; investigations; multiple pregnancy; mental health; emotional functioning; grief and bereavement; social functioning; relationship; whole person; subsequent pregnancy; subsequent children and siblings and economic. 242 outcome measurement instruments were used, with 0-22 tools per outcome. Conclusions Heterogeneity in outcome reporting, outcome definition and measurement tools in care after stillbirth exists. Considerable research gaps on specific intervention types in stillbirth care were identified. A core outcome set is needed to standardise outcome collection and reporting for stillbirth care research.

Objective To quantify parents’ experiences of respectful care around stillbirth globally. Design Multi-country, online, cross-sectional survey. Setting and Population Self-identified bereaved parents (n=3769) of stillborn babies from 44 high- and middle-income countries. Methods Parents’ perspectives of 7 aspects of care quality, factors associated with respectful care, and 7 bereavement care practices were compared across geographical regions using descriptive statistics. Respectful care was compared between country income groups using multivariable logistic regression. Main Outcome Measures Self-reported experience of care around the time of stillbirth Results A quarter (25.4%) of 3769 respondents reported disrespectful care after stillbirth and 23.5% reported disrespectful care of their baby. Gestation <30 weeks, and primiparity were associated with disrespect. Reported respectful care was lower in middle-income countries (MICs) than in high-income countries (HICs) (aOR=0.35, 95%CI (0.29-0.42), p <0.01). In many countries, aspects of care quality need improvement, such as ensuring families have enough time with providers. Participating respondents from Latin America and Southern Europe reported lower satisfaction across all aspects of care quality compared to Northern Europe. Unmet need for memory-making activities in MICs is high. Conclusions Despite improvements, many parents still experience disrespectful care around stillbirth. The gap between parents’ access to memory-making activities in MICs and HICs needs urgent attention. Tweetable abstract A quarter of parents of stillborn babies experience disrespectful care. There is global unmet need for memory-making activities