Flu or Flu-like illness in chronically ill or disabled children

Finding Information and Support

Parents used various sources of information and support. The Internet was a popular way to search for information about influenza and flu-like illness and also to communicate with other parents about how they manage flu-like illness. As Anita said, “Somebody has been there, done it before haven’t they?” Some parents told us they talked to parents on Internet chat forums, such as Netmums and Baby Centre.
Others found specific health condition Facebook forums or charity websites useful for reassurance or advice. Naomi’s local support group for children with Type 1 diabetes held coffee mornings which she said was an invaluable source of support. For Maria, NHS run diabetes parent meetings had been very helpful to hear how other parents of diabetic children had managed episodes of illness.
Parents we talked to who used the Internet to find information stressed that it was important to use reliable and trustworthy websites and to double check information. NHS websites and specific health condition websites, such as Asthma UK, were considered to be useful sources of information and support. Some parents also used general search engines, such as google. Michelle thought information on the Internet could be misleading because some parents are talking about their experiences of their child having a bad cold rather than influenza or flu-like illness.
Double checking information had helped Harriet. She had read in a magazine that an antibiotic her son, who has leukaemia, was taking had been banned for other children. This caused her a lot of worry. But when she double checked with her son’s consultant, she was told the antibiotic was not banned. Karen says she talks to her GP about information she has found on the Internet and her GP is happy for her to do this.
Specific health condition charities had been useful for reassurance and advice. Ruth and Nia had spoken to Asthma UK nurses. Nia says, “They’re really, really helpful and they put your mind at rest or tell you what they think you should be doing.” Michelle found WellChild a good source of support. She says, “There’s always someone friendly if you need a bit of advice.”
Some parents had received information about influenza or flu-like illness from health professionals early on in their child’s illness. The doctor had explained to Waj that because her daughter has cerebral palsy and her immune system is weak, she could be more susceptible to colds and flu-like illness. The asthma nurse told Lyndey, “Just be alert because it can come on very quickly.” She said it was, “the best piece of advice I was ever given.” When she was a baby, Louise, whose son has diabetes, had been told to follow the ‘Sick Day Rules’.
Other parents said they were drip fed information from health professionals and they would have liked more information from the start of their child’s illness. Having good information about what to expect when their child became ill and how best to manage helped parents to feel more confident and secure. Fiona says, “It empowers me to have the information.”
Kate, and others, said that although they had been given information they found it difficult to take in too much when their child was first diagnosed with a long term medical condition or disability.

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