Table 2.

Theme Definitions

Theme	Definition	Axial Themes	Representative Quote
Parental knowledge correlating to daughter’s preparation for menarche	Parental awareness of the possibility of early menarche and how to manage periods with a disability correlated to their ability to educate and physically prepare their daughters	• Timing of periods • Daughter’s preparation of periods • Preparing daughter with education • Preparing daughter with supplies • Impact of pandemic on sex education	“I made sure we were prepared. I made sure to get books and read them and keep us informed, but I don’t think doctors were.” -Participant 13
Variation in emotional response to menarche	Parents and daughter’s perception of periods and emotional response to starting and managing periods	• Daughter’s understanding of period • Daughter’s preparation for period • Emotional distress of having to manage periods	“…as parents, we had not… explained to her what was happening in her body, and it scared her to death.” - Participant 20
Parent’s perception of their daughter’s experience with menses and menstrual symptoms	Daughter’s physical experience of menses and cyclical physical and mood-related symptoms	• Physical impact of periods on health • Difficulties with periods • Irregular periods • Impact on whole family	“…she lashes out at her sisters…it’s not an all-the-time thing…it’s just when we know it’s getting time [for her period]…But right now…it’s not affecting her at school…or we would have already explored some options.” -Participant 34
Cross-section of disability and menstrual management	Disability-related difficulties and adaptations for menstrual management	• Accessibility for managing periods • Devices/supplies for managing periods	“It’s terrible. It’s awful… the tape [on the pad] don’t stick… to the pull-up. They move all around…Then the tape gets stuck in her pubic hair…” - Participant 2
Menstrual management at school	Experience of managing periods while at school	• Lack of school physical/emotional support • Helpful physical/emotional support • Preferences for support at school • School’s perception of child’s disability • Concerns about relying on others at school to care for periods	“…it’s impossible [for her] to change [her tampon or underwear] by herself at school…I [plan to] be there…I can hold her body…to help her.” - Participant 7
Desires for healthcare support	Parental experiences with and preferences for education prior to menarche and period management support	• Knowledge of providers regarding disability and puberty • Providers initiating conversations on sexual and reproductive health • Providers not initiating conversations on sexual and reproductive health • Desire for parent preferences to be respected	“…her pediatrician… [should have] stated, “[Daughter’s Name], you’ve managed your spina bifida this far…you’re gonna be able to do this.’” - Participant 3