Down Syndrome PMS diary
LJMU’s Professor Cliff Cunningham has spent many years studying Down Syndrome. He established links with a cohort of 160 plus families with newly born infants with Down Syndrome in the 1970’s
As they matured, one particular area that interested Professor Cunningham was how young women with the condition understand and cope with Pre-Menstrual Stress. Previously there had been very little research on the subject. Funding from the Down Syndrome Association and the Lottery allowed Professor Cunningham and LJMU’s Dr Linda Mason – who directed the work - to develop a unique PMS diary. This is a communicative aid to ascertain whether young women with Down Syndrome are affected any differently by PMS - or whether they’re more prone to specific symptoms - than typical women.
PMS is distressing enough to endure when you know exactly what’s happening, when, where and why. But how easy is it to comprehend, react to and learn to live with your body’s natural changes when you have Down Syndrome? How can you let parents - or those whose care you are in - know what you are experiencing - both in terms of the emotional aswell as the physical feelings - if you have communication difficulties? And, if they do suffer with PMS, do they receive the appropriate help?
These were the fundamental questions Professor Cunningham and Dr Mason set out to answer having devised a diagnostic tool that provides assessment of their needs. The PMS Diary will enable researchers to compare findings with the cognitive content and symptoms that the general population experience. Being aware of exactly how PMS affects young women with Down Syndrome is by and large unclear given the absence of fulsome and conclusive research.
The ‘This is how I feel every day diary’ combines instantly identifiable words and pictures that effectively illustrate the feelings – how, and to what extent they manifest themselves - encountered by young women with Down Syndrome. A simplistic ‘Diary entry’ layout encourages the women and their families to monitor and systematically record what they endure in the lead up to, and during, menstruation. The diary asks them to tick progressively-toned coloured boxes next to graphic icons that are representative of the ‘classic’ symptoms associated with PMS. Bloatedness, tiredness, constipation, depression, food cravings, mood swings and nausea are all illustrated. The severity of the emotion measured is depicted by the tonal variation of the boxes available to tick.
Addressing feedback obtained from the women and their families after an initial diary trial, Professor Cunningham applied a more illustrative approach to its successor to encourage further interaction. He then circulated a second sample to parents and members of the Down Syndrome Association. Results indicated it worked well for women, and their mothers found the PMS diary a helpful way of explaining aspects of menstruation to their daughters. Preliminary reports suggest the problems in Down Syndrome women reflect those of typical women.
The first of the projects papers has been accepted for publication, the second under consideration. With experts acknowledging the PMS diary’s potential, Professor Cunningham and Dr Mason now wish to use the concept to extend this work to record other conditions. Being suitable for any women with intellectual disabilities, they believe the diary formula could easily be tested in everday clinical use. Negotiations are on-going with colleagues across Europe and Australia to see if they might facilitate it.