“They had the lunch lady coming up to assist”: The experiences of menarche and menstrual management for adolescents with physical disabilities

Abstract

BackgroundMenarche is a pivotal time in an adolescent's life but can be experienced differently by those with physical disabilities. Parents typically serve as the primary educators and support for their daughters during this time. Little is known about the parent's perspective of their daughter's experience preparing for menarche and learning to manage menses. ObjectiveWe sought to understand the parent's perspective of the experience of their daughter with a physical disability around menarche and their preferences for health care provider support. MethodsIndividual semi-structured interviews were conducted with 21 parents of a daughter with a physical disability ages 7–26. Interviews were coded by 2 reviewers using Grounded Theory, with disagreements resolved by consensus. ResultsSix themes emerged regarding the parent's perception of the experiences, including 1) variation in emotional responses to menarche, 2) parent's perception of their daughter's experience with menses and menstrual symptoms, 3) cross-section of disability and menstrual management, 4) menstrual management at school, 5) parental knowledge correlating to daughter's preparation for menarche, and 6) desires for health care provider support. ConclusionsAll parents reported that their daughters faced challenges during menarche, ranging from emotional distress to dealing with the inaccessibility of hygiene products. Managing periods at schools was particularly burdensome. Parents who were better educated about what to expect were better able to prepare their daughters, but had difficulties finding informed, supportive providers. Health care providers should provide both anticipatory guidance and holistic, respectful, and equitable options for the management of menstrual symptoms.