Socioeconomic profile of families with spina bifida children in Turkey

Abstract

Background Spina bifida's prevalence and incidence vary across geographical regions with sociodemographic characteristics and socioeconomic status of the populations having a significate influence over its epidemiology. This study aimed to outline the socioeconomic profile of families with spina bifida children, based on sociodemographic characteristics.Methods Between August and December 2022, 86 surveys completed by parents of children that underwent spina bifida repair in our institution were included in this analysis. The first part of the survey included questions based on sociodemographic characteristics. The second part of the survey was based on care provided by the families, regular follow-ups, participation in rehabilitation programs, and type of burdens perceived by the caregivers.Results A close look at the highest level of parent education showed that more than half of them were only middle school graduates. Occupational status in the perioconceptional period revealed that 77% of mothers were housewives/unemployed. 23% had a history of induced or spontaneous abortion. A high number of consanguine marriages were registered with 58% of the subjects being biologically related. 53% of the spina bifida children came from families with low household income. Only 15% of the spina bifida children had access to physiotherapy and 18% to rehabilitation programs.Conclusions Children with spinal dysraphism were more likely to come from families resulted from consanguineous marriages, with at least two children, low level of parent education and household income. Emotional and financial burden perceived by caregivers should be addressed in order to diminish the numerous challenges that this group of families encounter.