Dialysis can be a difficult and stressful experience for your child and the whole family, including other children. You and your child will learn more over time about how to live with dialysis.
Your child’s healthcare team is there to help you. They can provide support with your child’s education, accessing financial benefits and planning holidays around dialysis.
Speaking with other families of children on dialysis can also be a huge support.
If you have any concerns or need additional support, speak with your doctor or nurse.
Support from the dialysis team
Your child’s dialysis team is there to help you. Some of the ways you and your child can get further support include the following.
- Education: your child’s schooling may be interrupted, especially if he or she has to go to the hospital frequently. Teachers are available to spend time with all school-age children as soon as they are well enough. The teachers make contact with the individual schools and take an active role in continuing each child’s education.
- Money: sometimes helping to looking after a child on dialysis can put a strain on household finances, especially if one parent or carer gives up work or works fewer hours. A renal social worker can help you access financial benefits from the government.
- Holidays: dialysis may make it more difficult to plan family time such as holidays or visiting other family members. Speak with your team about how to plan this time away so that it fits around your child’s healthcare needs.
- Speaking with other families: ask your hospital about meeting with other families of children on dialysis. Talking with parents and carers who have gone through similar issues can be a huge source of support.
If you have any concerns or need additional support, speak with your doctor or nurse.
Transition to adult services
When your child reaches adolescence, he or she will prepare to transfer from paediatric services (for children) to adult services. The timing is different for each person – though most will start being looked after by an adult nephrology unit by the time they are 18 years old.
Many units have a transition programme, which starts some years before the transfer, to help adolescents to prepare.