Cultural influences on parents’ experiences of care and support after stillbirth in Kenya, Uganda, Tanzania and Zambia: a qualitative study

E. Ayebare (1), T. Mills (2), C. Bedwell (3), G. Omoni (4), S. Wakasiaka (4), R. Laisser (5), C. Tembo Kasegele (6), T. Lavender (2)

(1) Department of Nursing, College of Health, Makerere University, (2) Division of Nursing Midwifery and Social Work, School of Health Sciences, The University of Manchester, (3) Division of Nursing Midwifery and Social Work, School of Health Sciences, The University of Manchester, (4) School of Nursing Sciences, University of Nairobi, (5) Catholic University of Health and Allied Sciences, Bugando, (6) Ministry of Health, Zambia

1) Background: Low and middle-income countries (LMICs) bear the highest burden of global stillbirths, 64% occur in Sub-Saharan Africa. Preventing stillbirth is a public health priority, but providing respectful support for bereaved families is also vital. Parents’ experiences are shaped by cultural and societal responses which influence grief processes and adjustment. Research in high-income settings demonstrates persistent stigma and limited public recognition of impacts, but experiences of parents in Sub-Saharan Africa have received little attention. Here, we explored parents’ views and experiences of cultural and societal responses after stillbirth in urban and rural settings in Kenya, Uganda, Tanzania, and Zambia.

2) Methods: Following consent, one to one, in-depth interviews were conducted with women (N=110) and male partners (N=90) who had experienced the stillbirth of their baby (≤ 1 year). Interviews were audio-recorded, transcribed, translated and analysed using an interpretive approach uncovering themes.

3) Results: Cultural and societal beliefs surrounding stillbirth featured strongly in parents’ narratives. For some women, fears surrounding impacts on future fertility acted as a barrier to seeing or holding their baby after birth. Although communities provided valuable support, several participants identified stigma arising from superstitions associating stillbirth with bad omens, evil spirits or curses. Partners often described feeling pressure to arrange burials rapidly, mothers were discouraged from attending and sometimes not aware that funerals had taken place.

4) Conclusions: Understanding cultural and social responses to bereaved parents in sub-Saharan Africa is key to improving care and support and reducing adverse outcomes. The findings of this study will be used to develop interventions to improve bereavement care e.g. fostering peer support and raising community awareness, which will be tested in future research.

Ethics statement: Approvals were obtained from University of Manchester (UREC: 2017-0233-4462,2018-4446-6653 ), University of Nairobi/KNH (P240/05/2017), Makerere University SHSREC /UNCST (SS 4666), CUHAS/BMC Tanzania Research & Ethical Committee (CREC/287/2018), Independent Research Board, Zambia (2018-Jun-029). Parent participants were approached via clinical teams. Following, explanations and time to consider, written consent was obtained. Interviews were conducted at a venue of participants choice with pseudonyms used to protect identity. A study-specific distress policy was adhered to at all times.

International Stillbirth Alliance, Annual Conference on Perinatal Mortality and Bereavement Care, Madrid, Spain. October 5-6th, 2019.

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