April 19, 2005 -- A diagnosis of type 1 diabetes is a life-changing event for a child, but it can be more traumatic for the parents than has been fully appreciated, new research shows.
Parents questioned within a few days of their child's diabetes diagnosis expressed shock and uncertainty about their ability to deal with the illness, the study showed. Even when interviewed a year later, many parents still expressed a sense of loss and grief.
Researcher Lesley Lowes, PhD, MSc, tells WebMD that few parents are prepared to hear that their child has a lifelong illness. Lowes is a pediatric diabetes nurse and research fellow at Wales College of Medicine in Cardiff, Wales.
"You go from one world to another in the blink of an eye," she says. "You are suddenly propelled from a world without diabetes to a world in which it is always a part of your life. That is a big emotional bridge to cross."
Support Is Key
Jill Roberts still remembers the overwhelming feeling of shock she felt six years ago when her now 12-year-old son Rhys received his diagnosis.
"It all happened so fast," she tells WebMD. "One minute we were in our [general practitioner's] office and the next we were at the hospital for the test, which came back right away. They sent us home with a bright green medical bag filled with all of the things we needed, which we still use to this day."
Roberts says the support she and her husband Robin got during those first days after her son was diagnosed made all the difference. Within hours of returning home from the hospital, Lowes was there showing them how to give insulin injections and check their son's blood sugar. They also relied on a telephone helpline to answer big and small questions.
"The support helped to reassure us about the big things and also the little things while we were learning how to handle all of this," she says.
The study by Lowes and colleagues included in-depth interviews with the parents of 20 children with type 1 diabetes, including the Robertses. The findings are reported in the latest issue of the Journal of Advanced Nursing.
The researchers found that prior to diagnosis most parents thought their children's symptoms were due to normal, transient childhood illnesses. Even when they suspected a chronic disease, the speed of the diabetes diagnosis took many parents by surprise.
"As a nurse in pediatric diabetes I was aware that parents often felt a sense of grief in coming to terms with their child's illness, but I was not prepared for the intensity of that grief," she says. "This speaks to the importance of providing psychological support for parents."
While most parents surveyed had accepted their child's illness after a year, many reported unexpected feelings of sadness and frustration at times triggered by events as simple as going on vacation, Lowes says.
Pediatric diabetes specialist Barney Softness, MD, tells WebMD that the parental grief documented in the study will surprise no one who works in the field. He says much of the focus is on the parents in the days following a child's diabetes diagnosis. Softness is a pediatric endocrinologist at Columbia University's Naomi Berrie Diabetes Center.
"With diabetes there is a lot a parent has to learn in a very short period of time. Some parents are totally freaked out and others jump right in," he says.
Softness says that while a diagnosis of diabetes does change a family forever, after awhile most parents are surprised to find that their lives and those of their children are pretty normal.
"At first there is a real mourning process, but after about a year most of the parents I deal with are in a much different place."
"You just get on with it," she says. "As they get older you get used to letting them go on school trips and sleepovers. At first you feel like sitting up all night chewing your nails."