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The child must be part of the conversation
One of the strongest areas of consensus was that children and adolescents cannot be treated merely as passive subjects of a parental or medical decision.
Clinicians shared examples of young people who were already acutely aware of illness in their families. Children see hospital appointments, correspondence, medication, parental anxiety and the experiences of grandparents. Some avoid asking questions because they are trying to protect their parents. Silence should therefore not be mistaken for a lack of understanding or concern.
An adolescent was described as asking what right an adult nephrologist had to make decisions about his life without first asking what he wanted. This example captured a key message from the session: maturity differs from child to child, but an adolescent’s views, fears and wish either to know or not to know must be actively considered.
The role of the professional providing counselling was also debated. A geneticist may understand genetic testing but have limited experience of ADPKD care; a nephrologist may understand the disease but have less expertise in genetics; an adult specialist may not fully appreciate paediatric development. The most important requirement is therefore disease-specific, multidisciplinary expertise—including knowledge of genetics, nephrology, paediatrics and the legal context in the relevant country.