Intermittent catheterisation in children September 2016 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 children 30.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/self-catheterisation in a short time period with high long-term success rates enhanced by teaching from an appropriately experience nurse/nurse practitioner with continuity being an important factor. Once the child and their caregivers became used to the procedure, the QOL was found to be similar to that of non-catheterising children. 44 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 49 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 are important to achieve acceptance and compliance64 Informing patients they can catheterise themselves for medical tests such as urodynamics also helps to promoting this and give the child control. 48 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 reduced in self-esteem although strong evidence is lacking.26 It should also be noted that it has not been possible to demonstrate an improvement in QOL following bladder reconstructions. 24, 46 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.29 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=