Stigma toward families of small, severely ill or stillborn babies and their mothers in Ghana: the experiences of postpartum women in Ghana

Stigma toward families of small, severely ill or stillborn babies and their mothers in Ghana: the experiences of postpartum women in Ghana

Kwame, S. (1,2), Sacks, E. (1,3)

(1)The Center for Learning and Child Development of Ghana, (2) Oakland University & (3) Johns Hopkins School of Public Health

Background:
Small, ill and stillborn infants are subject to both medical and social vulnerability. This stigma has received little attention, especially in sub-Saharan Africa, where the burden of these conditions is highest.

Methods:
We conducted a qualitative study to explore stigma related to baby’s size and appearance among 30 postpartum women who had given birth to small, severely ill or stillborn infants. Participants were recruited from two tertiary hospitals located in Accra, Ghana, and participated in semi-structured interviews. Mothers were asked about their understandings of the etiology and impact of birth size, health condition, or death, and the social experiences of having a small, severely ill or deceased newborn in the postnatal period. Data analysis was informed by interpretive phenomenology.

Findings:
Mothers’ evaluation of their babies’ smallness was based on their size, and not their weight. Stories indicated that babies’ identity was tainted because of their “undesirable” physical features and people’s unfamiliarity with their size or unique appearance. Participants’ narratives show that both caregivers and others characterized small or severely ill babies as being abnormal or looking “animal-like.” This devalued identity, mothers reported, was the basis for several negative stigmatizing behaviors toward them and their infants, which ranged from gossip to withdrawal of social support. Participants described ways in which mental distress from having a small or severely ill newborn manifested in their lack of self-care. Participants also described how having a stillbirth was a reason for withdrawal of social support and secrecy.

Conclusions:
In Ghana, being born small or having a severe health condition is an attribute that invites stigma toward the mother-child dyad. Having a stillbirth also leads to shame, secrecy and withdrawal of social support. Beyond prevention of these adverse outcomes, the findings support a multi-pronged approach, including sensitization, counseling, and multi-disciplinary health care team to address this stigma and its consequences.

Ethics statement:
Three ethical review boards approved this study. They were the Johns Hopkins Bloomberg School of Public Health Institutional Review Board (IRB No. 6651), the Ethical and Protocol Review Boards of the Ghana Health Services (ID: Ms-Et/M.2-P4.1/2015-2016) and the University of Ghana Medical School (ID: GHS-ERC 16/09/15). All participants provided a written informed consent before the interview proceeded.

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