Women with cerebral palsy: A qualitative study about their experiences with sexual and reproductive health education and services

Susan Hayden Gray*, Rachel Byrne, Sinead Christensen, David Williams, Molly Wylie, Eileen Fowler, Deborah Gaebler-Spira, Christina Marciniak, Laurie Glader

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

Abstract

PURPOSE: To explore the recalled experiences of women with CP regarding sexual health education and services they received. METHODS: Semi-structured interviews and focus groups were conducted at four academic tertiary hospitals with 33 adult women with CP. Templates were used to ask about four key content domains: Appointment planning (including planning for a gynecologic exam), accessibility of services, experiences with providers, and recommendations for improvement. Sessions were transcribed verbatim and analyzed to generate a coding dictionary. Blinded coding was carried out for each transcript, with duplicate coding used to confirm identified themes. Iterative analysis was used to identify and consolidate coding and key themes. RESULTS: Similar barriers were discussed at the four sites, including lack of accessible exam tables, hospital staff unfamiliar with physical disabilities, and assumptions that women with CP are not sexually active. Many described the sexual education they received as brief, omitted, or mistimed. Self-Advocacy was crucial, and recommended strategies ranged from pre-gynecologic exam medication to visit checklists. CONCLUSION: Reproductive health education for young women with CP is frequently inadequate. Medical professionals lack relevant knowledge and awareness; medical facilities lack necessary infrastructure. Recommendations for improvements are made.

Original languageEnglish (US)
Pages (from-to)285-293
Number of pages9
JournalJournal of pediatric rehabilitation medicine
Volume14
Issue number2
DOIs
StatePublished - 2021

Keywords

  • Health education
  • cerebral palsy
  • reproductive health
  • sexual education

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Physical Therapy, Sports Therapy and Rehabilitation
  • Rehabilitation

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