Parents' perceptions of the information received also varied. One parent felt that the health providers manipulated information in order to make parents more likely to agree with their
recommendations. One parent who was concerned about the way that information was presented to parents stated, "This is the decision of parents but they will not make that decision without having information from physicians. The question is how will they present the information" (Einarsdottir, 2009. , p 40). In some situations parents also felt that important information was regularly withheld from parents: "They do not tell parents until the parents show concern or if] there is a chance of not getting the severity level right I think that is wrong. Even. if they only slightly think there might be a problem, they should be right on it, explaining it and giving you a list of things you can do "(Alderson et al., 2006, p. 1325). However, the majority of parents did not have such negative experiences and felt generally well informed.