Susan H Gray1,2,3, Molly Wylie2, Sinead Christensen2, Anqa Khan2, David Williams2, Laurie Glader2,3,4. 1. University of Virginia School of Medicine, Charlottesville, VA, USA. 2. Boston Children's Hospital, Boston, MA, USA. 3. Harvard Medical School, Boston, MA, USA. 4. Nationwide Children's Hospital, Columbus, OH, USA.
Abstract
AIM: To explore experiences of parents of young females with cerebral palsy (CP) and intellectual disability at the onset of puberty. METHOD: This was a phenomenological qualitative study. We conducted phone interviews of parents of young females with CP and intellectual disability who had been seen in the CP center at a freestanding children's hospital within the prior 2 years. Inclusion criteria were English-speaking parents of young females who had combined diagnoses of CP and intellectual disability. Interviews were coded and analyzed by the research team facilitated by Dedoose software. RESULTS: Nine interviews were conducted with parents of daughters aged 14 to 24 years. All daughters used wheelchairs for mobility and augmentative technology for communication. Despite homogeneity in functional ability, there was marked variation in parental perception of the significance of puberty for their daughters. Families often learned about reproductive health from informal social networks. Although families acknowledged the need for sexual abuse screening, there was little consensus about how to do it, and most denied that their own daughter could ever be abused. INTERPRETATION: Parents of young females with CP and intellectual disability have diverse reproductive health beliefs that health care providers must explore in order to provide appropriate recommendations for management of puberty. WHAT THIS PAPER ADDS: Parents of young females with cerebral palsy (CP) and intellectual disability have diverse reproductive health beliefs. Approaches to menstrual management in this population must be individualized. Families discounted the likelihood of abuse, despite acknowledging their daughters' risk.
AIM: To explore experiences of parents of young females with cerebral palsy (CP) and intellectual disability at the onset of puberty. METHOD: This was a phenomenological qualitative study. We conducted phone interviews of parents of young females with CP and intellectual disability who had been seen in the CP center at a freestanding children's hospital within the prior 2 years. Inclusion criteria were English-speaking parents of young females who had combined diagnoses of CP and intellectual disability. Interviews were coded and analyzed by the research team facilitated by Dedoose software. RESULTS: Nine interviews were conducted with parents of daughters aged 14 to 24 years. All daughters used wheelchairs for mobility and augmentative technology for communication. Despite homogeneity in functional ability, there was marked variation in parental perception of the significance of puberty for their daughters. Families often learned about reproductive health from informal social networks. Although families acknowledged the need for sexual abuse screening, there was little consensus about how to do it, and most denied that their own daughter could ever be abused. INTERPRETATION: Parents of young females with CP and intellectual disability have diverse reproductive health beliefs that health care providers must explore in order to provide appropriate recommendations for management of puberty. WHAT THIS PAPER ADDS: Parents of young females with cerebral palsy (CP) and intellectual disability have diverse reproductive health beliefs. Approaches to menstrual management in this population must be individualized. Families discounted the likelihood of abuse, despite acknowledging their daughters' risk.