“Your heart keeps bleeding”: lived experiences of parents with a perinatal death in Northern Uganda

Abstract

Background Worldwide, two million babies are stillborn and 1.8 million babies die before completing seven days of life. Approximately 4% of pregnant women in Uganda experience perinatal death. The response following a perinatal death tends to be socio-culturally constructed. Investigating the unique personal experiences of parents from a low-income setting with unique cultural beliefs and practices is crucial for the design and implementation of appropriate interventions. Objective To describe the lived experiences of parents following perinatal death in Lira district, Northern Uganda. Methods A qualitative study was carried out drawing on the tenets of descriptive phenomenology. We conducted 32 in-depth interviews in Lira district, Northern Uganda between August 2019 and September 2020 with 18 women and 14 men who had experienced a stillbirth or an early neonatal death within the preceding 2 years. Participants were selected from different families and interviewed. A local IRB approved the study. All in-depth interviews were audio-recorded, transcribed, translated, and data were analysed using a content thematic approach. Key findings were discussed based on Worden’s Four Tasks of Mourning theory. Results The themes that emerged from the analyses included reaction to the perinatal loss and suggestions for support. The participants’ immediate reactions were pain, confusion, and feelings of guilt which were aggravated by the unsupportive behaviour of health care providers. Men cumulatively lost financial resources in addition to facing multiple stressful roles. Delayed reactions such as pain and worries were triggered by the sight of similar-age-babies, subsequent pregnancy losses, and marital challenges. Participants recommended emotional support and management of postnatal complications for parents faced with perinatal loss. Conclusion Losing a baby during the perinatal period in a resource-constrained setting negatively affected both gender. In addition, men suffered the loss of financial resources and the burden of multiple stressful roles. Acknowledging the pain and offering support to the grieving parents reinforce their coping with a perinatal loss. In addition to family and community members, health care providers need to provide emotional support and postnatal care to parents who experience perinatal death.

Women's experiences of care after stillbirth and obstetric fistula: A phenomenological study in Kenya

“…The lack of information, evasiveness, or misinformation from health professionals following stillbirth and fistula created anxiety in women and made them feel insignificant. These findings resonate with a previous study in Uganda, whereby healthcare providers were described as unsupportive following stillbirth, not providing consolation or an explanation about the cause of the stillbirth, with some mothers discovering the death themselves 19 . Similarly, a study of lived experiences in Malawi found women had little knowledge and understanding of fistula, unless a family member was previously affected, which led to misunderstanding and misattribution of the cause as the caesarean section surgery, their husband's unfaithfulness or witchcraft 20 .…”

“…Women did not expect poor outcomes and had to adjust and cope after their ‘dreams had been shattered’. Similarly, in Uganda, parents described the pain and confusion associated with stillbirth, feeling heartbroken returning home without their baby, and of coping with the loss of future dreams of the child growing up and supporting the family 19 . Women initiated coping mechanisms to conceal the loss or leakage associated with fistula, isolating away from other people or relocating to a new place, like what women described in Malawi 28 .…”

“…These findings resonate with a previous study in Uganda, whereby healthcare providers were described as unsupportive following stillbirth, not providing consolation or an explanation about the cause of the stillbirth, with some mothers discovering the death themselves. 19 Similarly, a study of lived experiences in Malawi found women had little knowledge and understanding of fistula, unless a family member was previously affected, which led to misunderstanding and misattribution of the cause as the caesarean section surgery, their husband's unfaithfulness or witchcraft. 20 Being ‘left in the dark’, being unable to understand what caused the death of a baby due to a lack of explanation from staff, also impacted on Kenyan and Ugandan parents’ experiences, with delays and deceit surrounding acknowledgement of the death adding to their distress.…”

“…Similarly, in Uganda, parents described the pain and confusion associated with stillbirth, feeling heartbroken returning home without their baby, and of coping with the loss of future dreams of the child growing up and supporting the family. 19 Women initiated coping mechanisms to conceal the loss or leakage associated with fistula, isolating away from other people or relocating to a new place, like what women described in Malawi. 28 Poor mental health was commonly reported, starting on the postnatal ward and becoming worse following the fistula diagnosis.…”

“…1 In 2014, the World Health Assembly set a target for reducing the stillbirth rates to 12 or fewer stillbirths per 1000 births by 2035. 2 Kenya has introduced the National Hospital Insurance Fund and free maternity care to improve access to maternity services 3 ; however, the stillbirth rate has remained static, with estimations of 19.67 per 1000 births in 2013 and 19.75 per 1000 births in 2019. 4 This is similar to other sub-Saharan countries where stillbirths have stagnated or even increased due to population growth.…”