Walking into the Emergency Department at the Perth Children’s Hospital with their sick two-year-old daughter Amelia, Brianna and Russell felt…
A new PMH Foundation-funded study is looking at ways to better support and educate parents whose children have been diagnosed with cystic fibrosis.
Princess Margaret Hospital is home to the only cystic fibrosis clinic in WA, and cares for about 200 children living with the genetically-inherited disorder, which affects the lungs and digestive system.
Most children who have cystic fibrosis are diagnosed as infants, and traditionally parents have received a period of education and orientation with the specialist cystic fibrosis team soon after their child’s diagnosis, to learn about the disorder and how to best care for their child.
The study is looking at how to improve this process, by identifying the most valuable information for parents of newly-diagnosed children and the most effective method of delivering this information.
Paediatric Respiratory and cystic fibrosis Specialist Dr Tonia Douglas explained this initial education session is extremely important for parents, because it provides the first insights into cystic fibrosis care, including physiotherapy, drug administration and organising out-patients visits.
With input from health professionals and parents who have been through the cystic fibrosis education and orientation program, researchers have developed a prototype questionnaire and conducted parent interviews which revealed insights into the need for more practical information.
Dr Douglas said the aim is to eventually develop a national framework to guide the delivery of information, and an Australian-based consumer-driven website for parents of newly-diagnosed babies.
“What we’re trying to do is develop a program of information delivery that is responsive to the needs of families – which will ultimately lead to better engagement, improved knowledge and understanding, and easier adjustment to the diagnosis,” she said.
The research will help families like Amie Langfrey and Ben Terry’s receive the right information about cystic fibrosis. Their 2 year old boy Archer was diagnosed with cystic fibrosis in 2013 when he was just two months old. Although the diagnosis was a shock to the family, Amie said their experiences with the team at Princess Margaret Hospital had been overwhelmingly positive.
“In that initial meeting, we were given all the basic information that we needed to know right then, and were told we could follow up with any questions or concerns no matter what time of day or night, which was really useful for us,” she said.