UCC STUDY: How medical terminology is conveyed to young people with cystic fibrosis plays a vital role in ensuring their good health, according to a study at University College, Cork. Ireland has one of the highest incidences of cystic fibrosis in the world and good nutrition is vital to those with the condition.
The study, carried out by Dr Eileen Savage at UCC School of Nursing and Midwifery, has shown one of the main problems in helping children understand why diet is important for their health is terminology.
Children with cystic fibrosis are required to eat a high calorie diet, taking 20-50 per cent more calories than children without the disease - 40 per cent of their food intake should come from fats. Although this diet is important for their health and survival, they do not always follow these recommendations. The result of this is poorer health due to weight loss and chest infections.
Parents and health professionals focus on weight gain as a key to good health whereas the children focus on energy levels. The children did not make the connection that maintaining their weight ensured that they had good energy levels, whether it's for playing football or for "hip-hop dancing".
Research has shown that good nutrition is a crucial factor in helping people with cystic fibrosis to achieve normal height and weight. Fewer infections mean a longer life-span. Many children now born with cystic fibrosis live into their 30s compared with 30 years ago when death usually occurred during teenage years, Dr Savage noted.
When children's diets are inadequate and they begin to lose weight over time, it is necessary to give them supplemental meals and snacks with high calorie drinks like milkshakes. If children continue to lose weight, they may require tube feeding and this is usually given at night during sleep.
The UCC study found that sticking to a cystic fibrosis diet could be hard for children, especially when expected to eat foods they dislike. Some children described it as a chore to eat the amount of food necessary. Some children spoke of healthcare professionals being insistent about eating when they were losing weight, as a 13-year-old girl said, "sometimes they'd be talking to you about food forever... just eat, eat, eat and eat... "
Other children spoke of difficulties in eating the diet because they had learned at school fatty foods were not good for their health. Information on good nutrition for the general population was not relevant or helpful to children with their condition.
According to Dr Savage, a child-centred approach which would alleviate the tensions between parents and children at times when children are reluctant to eat a high fat diet is needed.
"Some parents talked about battling with children to get them to eat," she said. "It's about tailoring the advice in the here and now and listening to what children have to say."
According to Dr Savage, encouraging a child with cystic fibrosis to eat a high fat diet for weight gain may not be the best approach to take whereas explaining that they need food for energy to play games or to go dancing may motivate them to stick with their diet.
Children described energy as something they could experience changing within their bodies from day to day whereas they had difficulties in knowing whether they were gaining or losing weight.
Dr Savage said the marginalisation of children at cystic fibrosis clinics was a big barrier to encouraging them to eat the correct food.
"At the clinics the message is targeted primarily at parents.Some children mentioned that when they go to the clinic it's their mam and dad that are talked to, and they are being talked about," she said.
Cystic fibrosis is a life-long disease that affects a number of organs in the body, mainly the lungs and pancreas. The disease is usually diagnosed in the first year of life and affects males and females. Every year, 30 to 40 children are born with cystic fibrosis in Ireland - there are more than 1,000 Irish people affected by the disease.