Sex and relationships education for individuals with Cystic Fibrosis: A Service-Based Approach

Emily Norris, Samantha Phillips, Catherine Butler, Kirsty James

Research output: Contribution to journalArticlepeer-review


Increasing life expectancy within cystic fibrosis (CF) raises challenges around previously neglected topics such as sexual and reproductive health (SRH). The study aimed to gather retrospective experiences of service provision around SRH to consider the role of the CF service, age of information provision and unmet needs highlighting possible improvements to provision. A mixed-methods retrospective survey-based design was employed. An Adult CF team participated in a consultation session generating survey questions around SRH. A 20-item online survey was constructed and disseminated to adult CF patients. Unmet needs were found in SRH provision in pediatric and adult CF services, with further information required by patients on topics including parenthood and fertility. Results support previous research findings highlighting the need for standardized provision around SRH. Age of SRH provision suggested individual differences in need within the pediatric service. Further research could explore format and specific age of SRH information provision.

Original languageEnglish
Pages (from-to)363-376
Number of pages14
JournalSexuality and Disability
Issue number4
Early online date22 Oct 2018
Publication statusPublished - 1 Dec 2018


  • Adult
  • Cystic fibrosis
  • Pediatric
  • Sex and relationships education
  • Sexual and reproductive health
  • United Kingdom

ASJC Scopus subject areas

  • Physical Therapy, Sports Therapy and Rehabilitation
  • Rehabilitation


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