Top Ten Tips

Supporting young adults to adhere to difficult treatment

Many young women who have a difference in sex development, or DSD, have vaginas that are smaller than expected. A process of dilation can be used to gently enlarge their vagina over a period of months. Dilating requires commitment, time and motivation to have a lasting effect, which is difficult when the process can be intrusive and uncomfortable. DSDteens, a peer support website, were developing a series of top tips for successful dilation and set out to communicate these in an approachable way that promoted adherence to the treatment.

How might we communicate tips for successful vaginal dilation to young adults in a memorable, positive and inclusive way?

Vaginal dilators available on the NHS (left) and Pure Romance Silicon Dilators (right)

Vaginal dilators available on the NHS (left) and Pure Romance Silicon Dilators (right)

Approach

The tips themselves were drafted based upon evidence-based literature, particularly the work of Dr Lih-Mei Liao at University College Hospital. Through a series of meetings with medical professionals and DSDteens volunteers, ways of visualising the tips were iterated and revised.

3 in 8 young women reported their compliance with dilation treatment as poor
Only 1 in 3 young women reported satisfaction with the dilation treatment

Insights

- The location of the vagina should be communicated clearly as an underdeveloped vagina can be difficult to locate

- The reader should be able to associate their own experiences with the tips through the use of different characters

- Tips should be distinct and memorable so they can be recalled at a later stage

- The colours and characters should be inclusive to different body shapes, stages of puberty and skin colours

- As personal and sensitive information, it was important that the format chosen to present the tips was a booklet rather than a series of postcards, which could be misplace

Solution

The Top Ten Tips booklet presents evidence-based information in a vibrant, positive and inclusive way. Each tip is embodied by a character and captured in a few short sentences.  

Getting the right mindset
Working the edge
Seeing improvement
Making it fun

An anatomy page at the back of the booklet enables the reader to identify the correct place and angle for the dilator. The hand-held mirror enables the viewer to associate with the diagram and shows that it's okay to explore your body.

More information

The Top Ten Tips booklet is a colourful and accessible resource unlike any dilation leaflets currently in circulation. It is anticipated the information booklet will be used in dilation clinics nationally to guide the young women through the process and signpost them to the dsdteens website for further support.