Cleft lip and palate: Parental experiences of stigma, discrimination, and social/structural inequalities

Abstract

Background:Cleft lip and palate (CLP) are the most common craniofacial birth impairment and one of the most common congenital impairments in humans. Anecdotal evidence suggests that stigmatization, discrimination, and sociocultural inequalities are common “phenomenon” experienced by families of children with CLP in Nigeria. This study aimed to explore the stigmatization, discrimination, and sociocultural inequalities experiences of families with children born with CLP.Materials and Methods:The study was carried out at the surgical outpatient cleft clinic of the Lagos University Teaching Hospital, Lagos, Nigeria. This was a cross-sectional descriptive study among mothers of children born with CLP, using both interviewer-administered questionnaire and a semi-structured interview.Results:A total of 51 mothers of children with cleft lip and/or palate participated in the study. 35.3% of respondents believed cleft was an “act of God,” whereas others believed it was either due to “evil spirit” (5.9%), “wicked people” (9.8%). Seventy-three percent of the mothers were ashamed of having a child with orofacial cleft. Two of the respondents wanted to abandon the baby in the hospital. About a quarter of the respondent wished the child was never born and 59% of the fathers were ashamed of the facial cleft. Fifty-one percent admitted that their relatives were ashamed of the orofacial cleft, and 65% admitted that their friends were ashamed of the cleft. In addition, 22% of the respondents admitted that they have been treated like an outcast by neighbors, relatives, and friends because of the cleft of their children. When asked about refusal to carry the affected children by friends, relatives, and neighbors, 20% of respondents said “Yes.”Conclusions:Myths surrounding the etiology of orofacial cleft are prevalent in Nigeria. Parents and individuals with CLP experience stigma as well as social and structural inequalities due to societal perceptions and misconception about CLP. Public and health-care professionals must be equipped with necessary knowledge to combat stigma, discrimination, social and structural inequalities, and misconceptions associated with orofacial cleft. CLP should be considered a facial difference rather than a disability.

Congenital granular cell epulis: Pattern of presentation in four Nigerian tertiary hospitals

“…[20][21][22][23] All of our cases occurred in females, a finding similar to some other studies. [22][23][24][25] The reason for the female predominance has not been established, as hormonal influences of estrogen and progesterone have not been detected; [4] however, endogenous maternal or fetal hormonal influences during pregnancy have been suggested as possible mechanism for the female predominance.…”

“…[20] Although lesions were observed at birth by the parents, Jalil et al, 2015, reported an average age of 16 days at presentation (range 2-90 days). The reason for the delay in some of the cases was unknown; negative cultural attitudes are a possibility as observed in congenital anomalies such as cleft lip [24] and natal teeth. [25] This might have discouraged the parent from seeking immediate medical assistance.…”

Adaptations in pediatric anesthesia care and airway management in the resource‐poor setting

“…While the incidence of congenital abnormalities in LMICS may be greater due to poverty, a greater proportion of teenage mothers, and poor antenatal diagnoses, the number surviving beyond the neonatal period is very low due to delays in presentation, poor neonatal resuscitation, poor nutrition, and lack of universally safe surgery . These factors partly explain the lower numbers of children with severe congenital airway abnormalities, in LMICs compared to HICs . For example, children with congenital syndromes such as Pierre Robin sequence, Goldenhar, and Treacher Collins syndrome which are commonly associated with difficult airways are rarely seen in LMICs.…”

“…The majority of patients with congenital abnormalities lead secluded lives with their parents in remote areas and present late because of the lack of safe affordable surgical care and beliefs that these children are bad omens to the community. Most children with syndromic anatomical features will not have a definitive diagnosis before surgery because of the limited ability to perform genetic testing which further complicates their care …”

Multidisciplinary approach to genomics research in Africa: the AfriCRAN model

“…Orofacial clefts are a matter of life and death in most part of Africa [ 16 , 17 ]. Stigmatization of individuals and families is very common in Africa, where there is limited knowledge about the etiology and management of clefts (Adeyemo et al, unpublished) [ 18 ]. Across the continent, it is still a challenge to explain the etiology of these phenotypes to families.…”