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Table 3 Examples of comments about the way the diagnosis was given to families

From: Australian families living with rare disease: experiences of diagnosis, health services use and needs for psychosocial support

Positive comments Negative comments
The doctor was very assuring and helpfuloffered a counsellor and a number to call if I needed any information no matter how importantI was on my own and I was offered no support or counsellingI was told with what seemed to be no empathy or sensitivity
The doctor was honest and did not find it easy to give such bad newsToo many people in the room
The haemotologist met with me and my husband alone and invited the geneticist along as well. They also followed with a letter and some fact sheets explaining the disease. This helped because it was hard to take it all in.’ The paediatrician walked out half-way through the diagnosis
Very satisfied because everyone involved knew what they were saying and doingPaediatric ophthalmologist not very sensitive; told us loudly with their back to our daughterwho is old enough to understand. Then referred to the [Genetic] metabolic clinic at Westmead….’
The staff in the genetic clinic were very informative and my husband and I could ask questions