Family affair: Managing a child with Type 1 diabetes
Coping tools can have profound impact
A diagnosis of diabetes in a child changes that family forever. "There’s no vacation, no respite. Nobody else can do it for you. You always have to pay attention to the clock," says Sandy Puczynski, PhD, director of research and evaluation for the Medical College of Ohio in Toledo and chairwoman for research of the Juvenile Diabetes Foundation.
"When a child gets diabetes, it’s much as though the whole family gets the disease because everyone has to deal with it," says Christine Ternand, MD, a pediatric endocrinologist at the University of Minnesota Hospital System in Minneapolis.
Both Ternand and Puczynski advocate individual contact with patients and their families as well as group therapy. Referral to a behavioral therapist is recommended if it the situation is serious enough to warrant it.
Ternand teaches coping skills to the entire family that focus on a model of grieving for the child that will never exist again through the classic stages of death and dying. "Some feel they have fallen into a black hole, a place of not feeling and denial," she says. "Another stage is guilt for having developed the disease, another is fear of the condition worsening, and finally, there is acceptance," she explains.
The need to grieve
The grieving for the life a child might have lived without diabetes is profound "because there are losses at the ages of 6, 12, 16, as there are things the child can’t do because of diabetes," Ternand says.
She remembers a woman in her 40s who came to her office one afternoon in support of a friend whose young daughter had recently been diagnosed with diabetes.
"When I told them we needed to say goodbye to the child who doesn’t need shots, she began to sob," Ternand says. "She cried for 40 minutes, grieving her own self’ as a child diagnosed with diabetes more than 30 years before and never having had the opportunity to grieve."
Unresolved grief may look very much like depression, she adds. "People become afraid to feel their sadness, anger, and fear. They can’t move on through the cycle until they do."
At the acceptance stage, she says, people begin to look at "what’s the plus?"
"I truly believe that everything has a blessing," Ternand says. "So I help them see that the family is pulling together. Maybe the whole family is eating healthier, that the child is becoming more responsible, that a child met her best friend at diabetes camp. I recently had a boy who discovered he was eligible for a scholarship because he is diabetic."
"Some people don’t want to talk to me after I introduce this idea, but I have planted the seed, even if it takes 10 or 15 years to sprout," she says.
Puczynski adds that diabetic children often grow up to be extraordinary adults because they mature at an early age.
Ternand works with an art therapist to help patients and their families express their feelings "at an awesome level." She recalls a little girl who drew a picture of herself and a friend walking down the street with a fence between them. "That fence was diabetes," Ternand says. (See samples of patient art, inserted in this issue.)
Diabetics and their families frequently express rage at the unfairness of the disease, Ternand says, recalling a diabetes camp counselor who was "the sweetest girl you’d ever want to meet and she drew an ax murderer chopping up diabetes."
She stresses the importance of being aware of the impact of diabetes on siblings. She remembers a child who drew the entire family in red except one child who was blue and crying huge tears. "That was the sibling who felt she had been excluded from something important." The father of one young patient drew an atom bomb when asked to portray the impact of diabetes on his life, she says. "Diabetes is a challenge for the entire family, and we need to treat it as such."
Both Puczynski and Ternand say diabetes can cause an already dysfunctional family to fall apart, in which case the burden of managing the disease will fall upon the shoulders of one parent — most often the mother.
Parents of diabetic children face multiple challenges. Puczynski says it’s difficult for a parent of an infant or toddler who must cause the child pain through repeated finger sticks and injections the child does not understand. "Even when parents know it’s for the child’s good, it is hard to hurt a child," she says.
It’s also hard to see a child lose his freedom, to lose his spontaneity, and as the teen-age years arrive, to address compliance issues in children who resent being different, who don’t want to take injections when they are with their friends, she says. Yet, she adds, teen-agers don’t want to embarrass themselves by having a hypoglycemic incident in public.
When to let go
Ternand and Puczynski agree one of the greatest challenges for health care professionals dealing with young diabetics is to help parents know when it is time to allow the child to take more responsibility for the disease and when to assert more control. They also agree the best approach to caring for any child with diabetes is to take an attitude of support, not one of criticism.
It’s very dangerous to threaten a child with dire warnings about the consequences of failing to maintain strict control, Puczynski warns. And when the going gets rough, Ternand recommends referral.
"Children with diabetes should be seeing people who deal with children with diabetes," Ternand concludes.
[Sandy Puczynski can be reached at (419) 383-5507. Contact Christine Ternand at (651) 641-3165.]
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