Study explores parents's reaction to discovering a child has diabetes

Apr 19 2005

Discovering a child has diabetes can be a traumatic and life-changing event for parents and researchers doubt whether many of them ever come to terms with it.

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 acutely aware of the risk of possible complications in later life and some expected their lives to be affected by the diagnosis for a long time.

However, others felt positive and were relieved that their child was not going to die and that the diagnosis had enabled them to find a rational explanation for their child's symptoms.

"During the first year after diagnosis, parents rebuilt a new model of their world. Normality became a lifestyle adapted to incorporate the needs of a child with diabetes.

"However our findings raise doubts about whether many parents of children with diabetes ever fully accept the diagnosis. Even a year after diagnosis their emotions resurfaced when circumstances reminded them that their children were different from others and that they had a chronic and unpredictable illness."

Parents' comments included:

"You wake up in the night and it's the first thing that comes into your head. You wake up in the morning and it's the first thing that comes into your head." - Mother of a 13-year-old boy, 10 days after diagnosis.

"The actual reality hit me when he had to have insulin…I was absolutely devastated." - Mother of a 12-year-old boy, five days after diagnosis.

"A lot of it, within the first few months, is just pure fear…it's dealing with an illness that you know absolutely nothing about…and the first month you're petrified, because you've got all this information coming at you, which you have to have, but you're thinking I am never going to come to terms with it." - Mother of a 13-year-old boy, four months after diagnosis.

"So things have changed slightly and, as they change after someone's died, there's a change in routine, a change in the way you do things…It's made me think of the life that used to be and the life that is now." Father of two-year-old boy, nine days after diagnosis.

"You look back and think…have I fed him right…and it's so stupid because you know, from what they've told you, that it's got nothing to do with that." - Mother of a six-year-old boy, seven days after diagnosis.

"What bothers me more than anything is things that could happen to him…his eyes or perhaps he might never have a family." - Mother of 12-year-old boy, 12 months after diagnosis.

"We could dwell on the negatives and let's ruin our lives. Or we could look at the positives and let's get on with it and let's look forward to a life that's different to how it used to be." - Mother of a two year-old boy, nine days after diagnosis.

"I've settled into it completely now…it's a sort of everyday thing…I wasn't first of all. I was terrified of it, but not any more." - Mother of a 12-year-old boy, four months after diagnosis.