There are a number of sexual and reproductive health considerations specific to CF, and young people are often coming to terms with their CF at the same time as they are developing their sexual identities. Research conducted by eminent clinicians and researchers indicates that there are critical gaps in the education and knowledge of young people with CF about sexual and reproductive health. It also found a number of barriers to addressing sexual and reproductive health topics, including within CF clinics.
A new online resource known as SPILL (spill.org.au) will help young people with CF understand this important aspect of growth, development and well-being. To our knowledge it is the first digital resource for sexual and reproductive health in CF for adolescents. Much work has been done to ensure that the information is relevant, targeted and age appropriate. The material is in both text and video formats, for teenagers with CF who are just learning about their sexual and reproductive health.
"There is a lack of accessible and accurate information regarding sexual and reproductive health for adolescents with cystic fibrosis, which results in clear detrimental psychosocial and emotional effects."
(Dr David Armstrong, Paediatric Respiratory Physician, Monash Medical Centre.)
Cystic Fibrosis Victoria, together with the Royal Children's Hospital and Monash Children's Hospital CF services developed a working group whose aim was to create an appropriate educational resource using funding CFV secured through an unrestricted educational Circle of Care grant from Vertex Pharmaceuticals. In conjunction with The Digital Clinic in Sydney, and with content provided by Dr Katherine Frayman (ATR in Respiratory Medicine, RCH Melbourne), and Dr Siobhan Bourke (Sexual Health Physician, Centre of Excellence in Rural Sexual Health, University of Melbourne), the Spill Project was created, expanding on previous work by Charlotte Roseby and Prof Susan Sawyer.
SPILL was officially launched by CFV CEO Karin Knoester at the Victorian CF Community Conference 2015.