Developing dietary phosphate education resources for children and young people
Educational materials that clearly and concisely convey essential information are a vital part of keeping the population healthy. Often when we are sat in front of the specialists, we are so busy taking information in, that it can be tricky to think of the right questions. It is also very difficult to retain new and complex information. This is especially the case when managing chronic conditions.
Professor Rukshana Shroff has made it her mission to better understand the problems faced by children and young people who are looking to control their blood phosphate (P) levels and wants to improve the educational materials used to support patients.
The kidney is often thought of as the world’s best filter. But even the best filters can fail. When they work well the kidneys ensure that harmful substances are removed, and useful substances are maintained at healthy levels. However, when they don’t work so well, harmful substances can build up in the blood and helpful ones can accumulate to the point where they are no longer helpful. One such substance is P. At high levels P can weaken bones and damage the heart.
Children and young people who are on dialysis or those with chronic kidney disease (CKD) are advised to consume a low P diet and are prescribed medications to decrease P absorption. However, many children and young people find it difficult to follow the restrictive diet and to take the medication.
Don’t worry P happy
Rukshana and her team want to know why children and young people find it difficult to maintain the restrictive diet and take the medication. They aim to relieve some of the anxieties by providing useful and relevant information. By listening to children, young people and their carers to better understand their lived experiences they hope to gain a deeper understanding of the problems.
Rukshana and her colleagues will have a look at the current educational material and will use focus groups to assess its efficacy. In close collaboration with children, young people and their carers new literature will be developed and assessed. This new literature will seek to inform in a much clearer way and address the problems raised by the focus groups. Particularly, Rukshana’s team want to help make adherence easier by listening to the experiences of the children and young people.
What this might mean for kidney patients
Bespoke literature that has been created and informed by the children, young people, and carers themselves under Rukshana’s guidance. This literature will better understand that barriers to adherence than the current literature. Through careful design the literature will be very accessible and easy to read.
Additionally, if this approach to improving literature proves successful then it will be used to improve other topics such as salt and fluid control.
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