Understanding parents' experiences and needs when managing menstruation with young people with intellectual disability.

Abstract

BackgroundMenstruation can be complex and challenging to manage, including for those with intellectual disability. People with intellectual disability experience additional barriers that prevent adequate access to information and support. Parents play an important role in supporting young people with intellectual disability with menstruation.ObjectivesThe aim of this study was to explore parental experiences and identify areas of complexity associated with menstruation for their young people with intellectual disability to guide the development of priority supports.DesignA qualitative interview study to deeply explore the rich experiences of parents.MethodsParents of young people with intellectual disability were interviewed about their experiences of supporting their child's menstruation, including their decision-making processes and information and management needs. Data were analysed using inductive reflexive thematic analysis with NVivo software.ResultsThe sample comprised 16 parents (all mothers) who discussed 17 young people with intellectual disability (10-25 years). Five themes were constructed: (1) Setting up for success (establishing positive menstruation attitudes), (2) Competing priorities (wellbeing, convenience, and inclusion prioritised over menstruation), (3) Support from multiple avenues (support from different people, professions, and organisations was important) (4) Protecting dignity and safety (concerns about sexual abuse, pregnancy, distress, socially unacceptable behaviours, and pain), and (5) There is more to be done (information and attitudes need to be improved).ConclusionsIt is important to understand the menstruation experiences and needs of parents of young people with intellectual disability because of management uncertainty and complexity. This study contributes to an under-researched field and can inform changes to better support families including much needed information and education.