Those are two of the key findings of a Cardiff University, UK, research study, published in the latest Journal of Advanced Nursing, which explores parents' reactions in the first year after diagnosis.
The intensity of the emotions expressed by the 38 parents taking part in the study surprised the team of researchers, led by Lesley Lowes from the Department of Child Health, School of Medicine, Cardiff University, UK.
They carried out in-depth interviews with the parents of 20 newly diagnosed children at a large Welsh teaching hospital, ranging from a few days after diagnosis through to 12 months. Half of the parents took part in a series of three interviews and the remainder were interviewed once.
"The intensity of their emotions surprised us and is perhaps not realised by other healthcare professionals working in this field" says Lesley Lowes, who specialises in nursing children with diabetes.
"Before diagnosis, most parents associated their child's symptoms with normal childhood illnesses.
"The unexpectedness and speed of diagnosis left all parents ill prepared to deal with the situation. Their world suddenly changed, leaving them insecure and uncertain about the future.
"Diabetes intruded emotionally and practically upon all of their lives."
Lesley Lowes and her team hope that their paper will help health professionals understand the emotional trauma faced by parents and the support they need to cope with the challenges posed by their child's illness.
"Twelve months after diagnosis, many parents continued to be aware of their loss, which included the loss of a healthy child and loss of control, freedom and spontaneity. They still found some changes caused by the diagnosis irritating and intrusive" she says.
They were also acutel
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Contact: Lesley Lowes
44-7-971-643-369
Cardiff University
18-Apr-2005