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

doi:10.3233/PRM-210020

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 journal › Article › peer-review

3 Scopus citations

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 language	English (US)
Pages (from-to)	285-293
Number of pages	9
Journal	Journal of pediatric rehabilitation medicine
Volume	14
Issue number	2
DOIs	https://doi.org/10.3233/PRM-210020
State	Published - 2021

Funding

This work was funded by a grant from the Cerebral Palsy Foundation. Dr. Gray’s work was supported in part by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) as part of a MCHB T71MC00009 LEAH training grant. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by HRSA, HHS, or the U.S. Government. For more information, please visit HRSA.gov.

Keywords

Health education
cerebral palsy
reproductive health
sexual education

ASJC Scopus subject areas

General Medicine

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10.3233/PRM-210020

Cite this

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

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.",

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AU - Fowler, Eileen

AU - Gaebler-Spira, Deborah

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N2 - 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.

AB - 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.

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

Abstract

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