P360: THE ROLE OF THE CYSTIC FIBROSIS COMMUNITY NURSE AN ONGOING INVESTIGATION INTO PARENTAL PERCEPTION OF CARE
M Macfarlane AOB Redmond
Paediatric Cystic Fibrosis Unit The Royal Belfast Hospital for Sick Children

All children with cystic fibrosis in Northern Ireland attend the Regional CF Unit in RBHSC. In 1998 this author undertook an audit of parental perceptions of this CF service to identify the need for a CF community nurse. Following 20 months in this post a second audit was undertaken to assess if the needs raised in the initial audit had been met. For this second audit a total of 244 questionnaire's were distributed and 149 responded = 61%. Two groups with differing needs were identified each answering different sections.

Group (a)
0-5 years. Perceived from the initial survey these parents to be understandably more anxious, particularly at the time of diagnosis, initiation of treatment and starting school.
Group (b)
5-18 years. It was considered that these children would be experiencing increase in hospital admissions and commencement of new treatments. Both groups answered a third section.

Analysis of the results showed;
Group (a) That an increase in follow-up visits from the CF Community nurse made parents more confident in administering medication and nutrition. 30% more families received a home visit from the nurse with 96.8% finding these visits beneficial.
In Group (b) 63.9% of families received a home visit an (increase from 5% at the previous audit) during treatments. 100% of those who responded agreed these visits were beneficial and the majority suggested further visits would be appreciated.

Section 3 results;
Total Implantable Devices are used in children who require iv antibiotics and have poor venous access. These required flushing every month to remain patent. 12.3% of our children have such a device. They previously attended hospital to have their device flushed. 88.9% of device flushes are now carried out at home by the CF community nurse. The community nurse has visited 33% of the schools to educate teachers on cystic fibrosis. Teachers and parents expressed they found this to be of beneficial and informative.

In conclusion it was clearly identified that the role of the CF community nurse was vital in providing support, advice and education to CF patients, their relatives and the many professionals involved in their care.