The social, psychological, educational opportunities and economical impact on spina bifida families in King Fahd University Hospital, Saudi Arabia

Abstract

BackgroundIn Saudi Arabia, there is insufficient data about the incidence and prevalence of neural tube defects (NTDs). Based on single hospital studies on limited geographical areas here, the incidence ranges approximately from 0.97 per 1,000 births to 1.09 per 1,000 births. During the past six decades, medical care for NTDs has improved significantly, resulting in better life expectancy. AimsIn this study, we are aiming to identify the impact of Spina Bifida (SB) on educational opportunities for the affected individuals, and the psychological, social and financial burden on the families. MethodsA cross-sectional study conducted at the Mylomengiyocele clinic at King Fahad University Hospital in Khobar, Saudi Arabia. 50 caregivers of patients with SB (between 2018-2019) were included. Data were obtained by answering a structured questionnaire through a telephonic interview. ResultsFinancially, 14.6 per cent pay for medications needed but not provided by the hospital. 52.4 per cent need to use a wheelchair, with 66.7 per cent provided by the family only. 46.5 per cent of the total patients needed to use urinary catheters, 52.4 per cent of them provided by the family. 71 per cent of the families receiving financial aid complained that it was not enough to cover the main needs of their child. Socially, 13.6 per cent reported some issues between the child and child's siblings. Psychologically, there was significant association between caregiver feeling loss of interest and sadness with spina bifida (SB) child interaction with his/her brothers or sisters. Regarding the schooling of SB Child, 33.3 per cent of our sample discontinued their education for a period. Also, 13.6 per cent of our sample reported lack of wheelchair ramp, and 59.1 per cent of the school faculty were not trained enough to provide the needed help to the child in cases of emergencies. ConclusionWith the results yielded, we recommend funding the social medias more in order to increase the awareness of this condition, more campaigns to advocate for SB rights. Also, providing public and school special needs preparations.

Using a health observance event to raise awareness: An assessment of World Birth Defects Day

“…Similarly, caregivers for children with cleft lip and palate and also spina bifida in South Africa said they felt stunned, anxious, sad, guilty, rejected by others, and in need of information upon receiving the birth defects diagnosis (Hlongwa & Rispel, 2018; Page & Coetzee, 2021). Middle school‐aged children with cleft lip and/or palate across various countries were more likely to report being bullied than those without this birth defect (Ammar et al, 2020; Glener et al, 2017; Nahal et al, 2019).…”