Parents’ and health workers’ experiences of care and support after stillbirth in Kenya and Uganda: A phenomenological study
Mills, Tracey A (1), Mukhwana, Raheli (2), Nendela, Anne (2), Omoni, Grace (2), Mweteise, Jonan(3) Nabisere, Allen (3), Ayebare, Elizabeth (3), Wakasiaka, Sabina (2) Lavender, Tina (1)
(1) Division of Nursing, Midwifery and Social Work, The University of Manchester, UK (2) School of Nursing Sciences, University of Nairobi, Kenya (3) College of Health, Makerere University, Kampala, Uganda
Ensuring compassionate care and support for parents experiencing stillbirth is key to
ameliorating adverse outcomes for families and society. Quality of care and support from health
workers has been demonstrated to be inconsistent across high income settings. There is a dearth of
research exploring the response of health systems in low/middle income countries, including Sub
Saharan Africa, which bear a disproportionate burden of stillbirths. Here, we explored the views
and experiences of parents and health workers of are and support after stillbirth in urban and rural
settings in Kenya and Uganda.
Following consent , one to one interviews were conducted with women (N=75) and male partners
(N=51) who had experienced the stillbirth of their baby (up to 1 year). Health workers (N=53; midwives, nurses and doctors), who provided care after stillbirth, in the same sites, also participated.
Interviews were audio-recorded, transcribed and analysed using Van Manen’s reflexive approach.
Recurrent themes in participants’ narratives revealed barriers and facilitators to the
provision of quality care after stillbirth. Parents reported insensitive staff communication and
behaviour and deficits in information provision. Facility policies such as inflexible visiting and
requirements for partners/ relatives to confirm identity before transfer of the baby to the mortuary
compounded parents’ distress. Health workers described significant personal impacts, an
increasing blame culture surrounding poor outcomes and a lack of education and preparation
for caring for bereaved parents.
This study has contributed to understanding the response of the health system to bereaved parents
in Kenya and Uganda, identifying potential service improvements. The results will be used to develop
interventions to improve bereavement care e.g.educational packages, which will be tested in future trials.
Approval for this study was obtained from University of Manchester (UREC2017-0233-4462 ), University of Nairobi/Kenyatta National Hospital (P240/05/2017) and Makerere University SHSREC /UNCST (SS 4666). Parent participants were identified and approached via clinical teams, for consent for contact by the research team. Following, verbal and written 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