Department Surgery, Duke University, Durham, NC.
University of North Carolina School of Medicine, Chapel Hill, NC.
Surgery. 2021 Feb;169(2):311-317. doi: 10.1016/j.surg.2020.09.018. Epub 2020 Oct 21.
The true incidence of congenital anomalies in sub-Saharan Africa is unknown. Owing to complex challenges associated with congenital anomalies, many affected babies may never present to a health facility, resulting in an underestimation of disease burden.
Interviews were conducted with Ugandans between September 2018 and May 2019. Responses from community members versus families of children with congenital anomalies were compared.
A total of 198 Ugandans were interviewed (91 family members, 80 community members). All participants (N = 198) believed that seeking surgical care would lead to poverty, 43% (n = 84) assumed fathers would abandon the child, and 26% (n = 45) thought a child with a congenital anomaly in their community had been left to die. Causes of anomalies were believed to be contraceptive methods (48%, n = 95), witchcraft (17%, n = 34), or drugs (10%, n = 19). Of family members, 25 (28%) were advised to allow the child to die. Families with affected children were more likely to have a lower income (P < .001), believe anomalies could be treated (P = .007), but thought that allowing the child to die was best for the family (32% vs 9%; P < .0001). Monthly household income <50,000 Uganda shillings ($13 United States dollars) was a significant predictor of the father leaving the family (P = .024), being advised to not pursue medical care (P = .046), and believing that God should decide the child's fate (P = .047).
Families face significant financial and social pressures when deciding to seek surgical care for a child with a congenital anomaly. Many children with anomalies may die and never reach a health facility to be counted, thus contributing to a hidden mortality.
撒哈拉以南非洲先天性异常的真实发病率尚不清楚。由于先天性异常相关的复杂挑战，许多受影响的婴儿可能从未到医疗机构就诊，从而导致疾病负担被低估。
2018 年 9 月至 2019 年 5 月期间，对乌干达人进行了访谈。比较了社区成员与先天性异常患儿家属的回复。
共访谈了 198 名乌干达人（91 名家属，80 名社区成员）。所有参与者（N=198）均认为寻求手术治疗会导致贫困，43%（n=84）的人认为父亲会抛弃孩子，26%（n=45）的人认为社区中患有先天性异常的孩子会被遗弃而死。异常的原因被认为是避孕方法（48%，n=95）、巫术（17%，n=34）或药物（10%，n=19）。25 名（28%）家属被建议让孩子死亡。有患病子女的家庭收入较低（P<0.001），更有可能认为异常可以治疗（P=0.007），但认为让孩子死亡对家庭最好（32%比 9%；P<0.0001）。家庭月收入<50000 乌干达先令（13 美元）是父亲离开家庭（P=0.024）、不寻求医疗护理（P=0.046）和相信上帝应该决定孩子命运（P=0.047）的重要预测因素。
当决定为患有先天性异常的孩子寻求手术治疗时，家庭面临着巨大的经济和社会压力。许多患有异常的儿童可能死亡，从未到达医疗机构就诊，从而导致死亡率被低估。
