For families and carers
Talking to children and teenagers
Children always know that something is wrong. What they do not have is the information, so they build their own explanation out of overheard fragments, and the version they build is almost always worse than the truth, and usually has them to blame for some of it.
What tends to help, at any age
- Use the real words. Kidneys. Dialysis. Hospital. Machine. Euphemisms such as "a bit poorly" or "gone away for a while" do not protect children, they just leave them frightened without a vocabulary, and they destroy the child trust in you when the truth arrives anyway.
- Say clearly that it is nobody fault, and say it before they ask. Children, especially young ones, quietly assume a share of the blame for anything bad that happens near them.
- Say clearly that they cannot catch it, and nor can you. Kidney failure is not an infection and it does not spread.
- Tell them what changes for them. This is the question a child is actually asking. Who collects me. Who cooks. Will we still go. Will you be there on Saturday. Answer that, concretely.
- Do not promise what you cannot promise. Never say "he will be completely fine". You do not know that, and a promise that breaks does more damage than an honest "I do not know, and I will always tell you what I do know".
- Expect the same question over and over. Children process by repetition, not by being told once. Answering it patiently for the fortieth time is the work.
- Let them see it, if the unit allows and the person agrees. The imagined machine is nearly always more frightening than the real one, and a chair with a television and a nurse in it is very ordinary.
- Give them a job, if they want one. Small, real, and theirs. Being useless beside a sick person you love is corrosive at any age.
- Tell the school. A teacher who knows why a child is tired, distracted or angry can help. A teacher who does not know will discipline them for it.
- Let them still be children. They are allowed to be bored by it, to want to talk about something else, to laugh, and to have a good day. That is not disloyalty.
What to say, roughly by age
Young children, roughly under six
Keep it short, concrete and repeated. Grandad has an illness in a part of his body called the kidneys. The kidneys clean the blood, and his have stopped doing it, so he goes to the hospital and a machine cleans it for him. It takes a long time and it makes him tired. He will still be Grandad. It is not because of anything you did, and you cannot catch it. Then answer the same three questions again next week. Watch for it coming out in play, in sleep, or in a return to younger behaviour, rather than in words.
Primary school age, roughly six to eleven
They want the mechanics, and giving them the mechanics is genuinely calming, because it replaces a monster with a machine. Explain that the treatment is usually three times a week and takes about four hours each time, and that afterwards people often feel wiped out, so a quiet Mum on a Tuesday evening is the treatment, not a mood, and not something they caused. Expect blunt questions, including whether the person is going to die. Answer honestly and at their level, without a speech: this illness is serious, the treatment helps a lot, and I will always tell you the truth about it.
Teenagers
Tell them the truth, in adult terms, because they will look it up anyway and they will find something far bleaker than what you would have said. Include them in the practical planning if they want it, and take their opinions seriously. Then watch two specific risks. The first is the teenager who quietly becomes a carer, taking on lifts, cooking and younger siblings, and whose own school, friendships and adolescence are dismantled while everyone praises how mature they are. The second is the teenager who goes silent or angry, and is treated as difficult when they are grieving. Protect their life. Say out loud that it is not their job to hold the family together.
Grandchildren
The conversation is much the same, but the pressure is different. Grandchildren are often the ones with the energy to visit and the least frightening thing in the room, and a visit from them can be the best hour of a dialysis week. Do not use them as therapy, and do not conscript them. Ask them, and let them say no.
Signs a child is struggling more than they are saying
- Sleeping badly, or not wanting to sleep alone again after years of doing so.
- Going backwards: bedwetting, clinginess, baby talk in a child who had left those behind.
- Not wanting to go to school, or a sudden change in how they do there.
- Stomach aches and headaches with no clear cause. Distress in children very often arrives as a body complaint.
- Anger, especially anger that is aimed at the safe adult rather than at the illness.
- Going very quiet, being very good, and taking on far too much. The child who is no trouble at all is sometimes the one in the most trouble.
None of these prove anything on their own, and children are allowed to have bad weeks. But if a pattern is building, say so to your own doctor and ask the renal team whether the renal social worker, counsellor or psychologist can help. Asking early is not an overreaction.
If the person on dialysis is a child
Everything on Dialysis.sc is written about adults. That is a deliberate limit, and it matters here more than anywhere else on the site.
Children and young people do develop kidney failure, and they do need dialysis and transplantation. But paediatric kidney care is a distinct specialty, not adult care scaled down. Growth and puberty, nutrition, schooling, the choice and technique of dialysis, medicine doses, the transition into adult services, and the way decisions are made with a family rather than with a single adult patient are all genuinely different. Applying adult information to a child is not conservative, it is unsafe.
So we will not attempt it. If the person you are worried about is a child or a young person, their care needs to sit with a paediatric nephrology service, and the questions on this page are the wrong ones. Ask their doctor, or ask the renal unit, to tell you exactly which paediatric service is responsible and how to reach it.
We are also not going to tell you what paediatric renal services exist in Seychelles, because we could not verify it. We would rather say that plainly than publish a guess that a frightened parent then relies on. Ask the renal unit or the Ministry of Health directly, and get the answer from them.