24 Chapter 5 Quality of Life (QOL) The presence of a complex congenital disorder that requires catheterisation/self-catheterisation could be perceived to have a negative effect on the QOL of these children and their caregivers. One of the reasons for this may be the lack of freedom in their daily routine, which can hamper social integration. Introspective behaviour compared to peers and a fear of discrimination can also be common in these children25.In children with normal genital sensation who require catheterisation/ self-catheterisation, it has also been shown that children and their caregivers could be taught catheterisation/selfcatheterisation in a short time period with high long-term success rates enhanced by teaching from an appropriately experienced nurse/nurse practitioner with continuity being an important factor.36There is discussion about Qol compare to children who do not need to catheterise. Some stated that QoL is less, others that it is not clear. Children generally accept the procedure as something that must be done and have strategies to make it easier. They may, however, experience mixed responses from classmates, positive in the form of admiration and negative if they need to wear continence products, with possible disgust at the idea of using a catheter. Some may also experience teasing/bullying. The private nature of the procedure usually means children want to keep it discreet. However, having to go to the toilet at fixed times can make this difficult to achieve. Encouraging participation in decisions and promoting integrity is important to achieve acceptance and compliance. Informing patients that they can catheterise themselves for medical tests such as urodynamics also helps to promote this and give the child control. It should be considered that problems with bladder and bowel control could lead to problems with independence and socialisation and, in the long term, to self-isolation and a reduction in self-esteem, although strong evidence is lacking. It should also be noted that it has not been possible to demonstrate an improvement in QOL following bladder reconstructions. 22 Adolescents, in particular, may have problems with low self-esteem and lack of self-confidence as a result of the odour related to urinary incontinence, and low adherence is sometimes a problem in this period of life.47 … Recommendation LE GR QOL is affected by many different factors; it is important to be aware of this and to discuss it during follow-up visits 4 C
RkJQdWJsaXNoZXIy NjM1NTk=