We found the article by Kanaheswari et al.1 very interesting. This study included 81 mothers of children with spina bifida who completed the Parenting Stress Index forms defined by Abidin. They demonstrated that more than a third of mothers of this study had clinically significant levels of parenting stress. Single parent condition and clean intermittent catheterization (CIC) that has to be done necessarily for the patient were two significant factors causing parental distress in higher grades.
In agreement with this study from Malaysia, we observed extremely stressful situation in the families with spina bifida children in this side of the world in developing and underdeveloped countries, which lack good social support systems for disabling diseases. Learning from successful experience of developed countries, making a support group, spina bifida clinic in association with community services and high quality insurance system all can reduce the burden of stress from an unwanted disease and may help the family.
From all problems that the child with spina bifida is confronted, the urinary consequence especially incontinence is the most horrible for the child and family. CIC is an option that helps the child to be relatively socially controlled and protects the upper urinary tract from the probable damages subsequent to high-pressure neurogenic bladder. Introducing CIC to the child in the later age is a catastrophe for the family and the patient. Both of them find it very difficult to accept and are not compliant to perform it regularly. Here we want to highlight our satisfactory experience of CIC in early infancy. With thorough urological evaluation of all children born with spina bifida at early infancy and the diagnosis of high-pressure neurogenic bladder, CIC is prescribed. The child accepts it as the daily routine schedule including feeding, bathing and dressing, when growing up. This is one big advantage of CIC in early life comparing with introducing CIC in older aged children.
Performing CIC in older children is sometimes very difficult, which is near impossible to be done as the child rejects it vigorously. On the other side there are terrified parents who are afraid of upper urinary tract damage and are willing to do it at any price. Sometimes they use force to do it and the scene is emotionally so much traumatic for the child (like an abusive behavior), which yields really adverse effects on the child parent relationship.
Kanaheswari Y, Razak NN, Chandran V, Ong LC . Predictors of parenting stress in mothers of children with spina bifida. Spinal Cord 2011; 49: 376–380.
The authors declare no conflict of interest.
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Nejat, F., El Khashab, M. Predictors of parenting stress in mothers of children with spina bifida. Spinal Cord 49, 1085 (2011). https://doi.org/10.1038/sc.2011.40