Diabetes in Children: A Family Matter

Type 1 diabetes is a lifelong condition, most often diagnosed in children and young adults. Treatment involves daily injections of insulin, regular exercise, proper nutrition and emotional support. A huge responsibility for anyone, even more so for a young child.

When a child is diagnosed with type 1 diabetes, the entire family is affected as everyone must adjust to a new way of living. With the right level of support, family members can play a central role in helping their children manage their treatment with confidence.

In Ethiopia, Getamesay’s son, Christian, has type 1 diabetes. Since he was diagnosed at age three, Getamesay has adopted his son’s life style. He’s helped create a home where diet and Christian’s daily treatment needs are routine.

“If Christian did not have type 1 diabetes, I might not give such concern for types of food we buy,” says Getamesay. “Instead, my life has been adjusted according to his need.”

A new routine
At the time Christian was diagnosed, life had been quite different. There was strain between Getamesay and his wife and things were far from routine. After the diagnosis, life became even more stressful for both parents.

“The new responsibility was a lot to cope up with,” says Getamesay. “Shortly after Christian’s diagnosis we became separated. We agreed that I should take sole responsibility for Christian.”

In the beginning, the daily adherence to Christian’s diabetes treatment was difficult. He was also concerned about the availability and affordability of insulin, test strips and glucometers to measure and monitor Christian’s blood sugar level. Christian was soon enrolled in the Changing Diabetes® in Children programme at Tikur Anbessa Hospital in the city of Addis Ababa. Through the programme, he was able to get the insulin and monitoring supplies without cost.

“We were lucky the Changing Diabetes® in Children programme, under the Ethiopia Diabetes Association, had started up,” says Getamesay. “Being a minibus driver and earning a meagre income made it impossible to afford the cost of care for Christian.”

There were other challenges Getamesay had to face in the early years. As a minibus driver, he was frequently away from home. To support the daily management of Christian’s diabetes, Getamesay invited his sister to move in. When Christian started school, he had the ongoing task of informing teachers and staff about hypoglycaemia (1) and Christian’s treatment needs.

Getting the right support
The focus was clearly on Christian and ensuring that his health and wellbeing were good. But Getamesay was facing needs of his own, getting support to help him adjust to life as a parent to a child with type 1 diabetes.

Getamesay sought support and was fortunate to find the Parent and Child Forum at the Tikur Anbessa Hospital’s Changing Diabetes® in Children clinic. At forum meetings, parents like Getamesay learn about type 1 diabetes and how to manage their children at home. But most importantly, the parents share their challenges, fears and success stories openly and learn from each other.

“It was good for me to learn that there are parents who shared the same experiences and were willing to support each other,” says Christian. “The support given to me is significant and it would be difficult for me to deal with being there for Christian without the support.”

In addition to sharing and discussing life as a parent to a child with type 1 diabetes, a counsellor is invited to help parents overcome the practical and emotional challenges that come with being a parent to a child with type 1 diabetes.

Misrak Tarekegn, who works for the Ethiopia Diabetes Association and acts as project manager for the Changing Diabetes® in Children clinic, explains that the forum meetings are usually an impactful and therapeutic experience for parents.

Misrak explains: “Suddenly, parents don’t feel alone and become more involved in their children’s diabetes. This boosts the confidence of the children and they no longer feel isolated either. When a parent is not involved, the whole burden of taking care of diabetes rests on children, and they may not take care of themselves very well.”

An eye-opener
What is initially eye-opening for parents is the discovery that there is a considerable number of children with type 1 diabetes living in Addis Ababa. The numbers continue to increase as stories spread about how the forum has helped improve care and overall health of the children.

“We have seen an increase in the number of children who come to the association [Ethiopia Diabetes Association] for education,” says Misrak. “Of great importance is that we can also see that the number of children who experienced diabetic ketoacidosis (2) has decreased.”

Diabetes specialists are invited to the meetings to both educate and assure parents that every child can thrive with diabetes. A dietician also joins to clear up myths about diet and provide informed guidance about what their children should be eating.

Through the Parent and Child Forums, Misrak has witnessed parents taking on a more engaged and confident role in helping their children. Though the journey can be hard.

“Many of the meetings are quite sentimental. I remember when a mother narrated her path from denial to acceptance and many of us were crying because it was so difficult,” says Misrak. “The story was so powerful that some mothers who didn’t have a child with diabetes got involved and continue to support the forum.”

For Getamesay the forum meetings have been a life-saver. “Without the support I’ve received, I do not know how I would have dealt with this situation. Christian is now eight years old, healthy and cheerful.

I am so grateful to the support of Novo Nordisk through the Ethiopian Diabetes Association,” says Getamesay.

About Changing Diabetes® in Children
Novo Nordisk, together with a range of partners, established the Changing Diabetes® in Children programme in 2009. The programme’s primary aim is to improve delivery of care to children with type 1 diabetes in resource-poor settings. Today, it has reached more than 13,000 children in nine countries in Africa and South Asia. More information and materials are available at novonordisk.com/cdic

Read more about Novo Nordisk’s approach to business in the most recent issue of TBL Quarterly: http://bit.ly/1NJfWlW

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1. Hypoglycaemia, also known as low blood sugar or low blood glucose, is when blood sugar decreases to below normal.

2. Diabetic ketoacidosis is a life-threatening problem that affects people with diabetes. It occurs when the body cannot use sugar (glucose) as a fuel source because there is no insulin or not enough insulin. Fat is used for fuel instead. When fat breaks down, waste products called ketones build up in the body.