"They had the lunch lady coming up to assist": The experiences of menarche and menstrual management for adolescents with physical disabilities.
Adolescence
Cerebral palsy
Disability
Menstruation
Spina bifida
Journal
Disability and health journal
ISSN: 1876-7583
Titre abrégé: Disabil Health J
Pays: United States
ID NLM: 101306633
Informations de publication
Date de publication:
10 2023
10 2023
Historique:
received:
10
03
2023
revised:
30
06
2023
accepted:
13
07
2023
medline:
18
9
2023
pubmed:
7
8
2023
entrez:
6
8
2023
Statut:
ppublish
Résumé
Menarche 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. We 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. Individual 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. Six 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. All 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.
Sections du résumé
BACKGROUND
Menarche 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.
OBJECTIVE
We 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.
METHODS
Individual 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.
RESULTS
Six 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.
CONCLUSIONS
All 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.
Identifiants
pubmed: 37544804
pii: S1936-6574(23)00082-1
doi: 10.1016/j.dhjo.2023.101510
pii:
doi:
Types de publication
Journal Article
Research Support, N.I.H., Extramural
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
101510Subventions
Organisme : NICHD NIH HHS
ID : K23 HD105987
Pays : United States
Informations de copyright
Copyright © 2023 Elsevier Inc. All rights reserved.
Déclaration de conflit d'intérêts
Conflicts of interest All authors report no conflict of interest.