Disability and menstruation in Nepal: how we developed our behaviour change intervention

WaterAid/ Shruti Shrestha

Globally over 1 billion people have an impairment and about one third of those are women who may menstruate1. Jane Wilbur presents the second in a series of blogs charting a groundbreaking behaviour change intervention in Nepal.

Disability and menstrual hygiene are shrouded in stigma, and it is likely that people with disabilities like Meena, pictured above, face multiple layers of discrimination when they menstruate. But little is known about the topic and very few interventions exist2.

The Disabling Menstrual Barriers research follows the Behaviour Centred Design model – an approach adopted by WaterAid in its work on improving hygiene. The research aims to understand and address the barriers to menstrual hygiene management that adolescents and young people with a disability face in Nepal.

After conducting formative research on the topic in Nepal, we developed the Bishesta campaign – the first intervention on menstrual hygiene management for people with intellectual impairments and their carers of its kind in any low and middle income country. This blog will explain how we developed the Bishesta campaign (read my blog on the formative research findings to understand the barriers and the campaign focus rationale).

The campaign

I went back to Nepal to share the formative research findings with the carers of people with intellectual impairments who were part of the research. I also told them what I was thinking for the intervention. I showed them some of the resources used in high income settings: large dolls and visual stories to explore puberty and menstrual hygiene management with people who have an intellectual impairment3. The carers agreed with the findings and were excited about the developments, so I followed up by sharing the research findings with policy makers and implementers working on disability, water, sanitation and hygiene (including menstrual hygiene management) in Nepal.

Our creative team then met to design the intervention. The creative team members were important – we had the founder of the Down Syndrome Society Nepal (DSSN), who’s also a mother of a young man with Down syndrome, government social mobilisers from Kavre, implementing organisations (KIRDAC and CIUD), WaterAid staff, an artist and an entrepreneur. As a group, we reviewed the formative research findings to understand what was limiting the ability of people with intellectual impairments to manage menstruation hygienically and with as much independence as possible. Then we identified what they and the carers could do differently to make this happen – and named these our 'target behaviours'.

Bishesta table behaviours

 

Meet Bishesta and Perana

To encourage people to adopt the target behaviours, we came up with two fictitious characters who already carry out the behaviours.

Bishesta and PeranaWaterAid/LSHTM
Bishesta (left) and her carer Perana

This is the storyline upon which the campaign is based. It captures all the target behaviours and is designed to motivate people to want to be like Bishesta and Perana:

Bishesta ('extraordinary' in Nepali) is a girl with an intellectual impairment, with hidden, extraordinary talents. She gets her menstrual products and pain relief from her carer; she uses them properly and feels comfortable and confident at home and in public. She lives a dignified life. Whenever she needs support to understand the changes she faces when growing up, her carer Perana ('motivation' in Nepali) motivates and helps her. She also offers enough menstrual products and provides pain relief when Bishesta needs it. When Perana does this, Bishesta shows her love. Perana feels confident that Bishesta is more able to take care of herself.

Period Packs

We designed Period Packs for people with intellectual impairments in order to encourage them to adopt the target behaviours. The packs included:

  1. A menstrual storage bag which includes reusable menstrual pads. These should be kept near the young woman's bed and kept well stocked by the carer.
  2. A menstrual shoulder bag that includes a small waterproof bag to put a soiled menstrual pad in when outside the home.
  3. A menstrual bin to dispose of used menstrual products. This should be kept near the young woman's bed.
  4. Visual story: 'I change my pad', which is about Bishesta menstruating for the first time, how Perana supports her to manage as independently as possible.
  5. Visual story: 'I manage', shows Bishesta learning that she mustn’t take her menstrual pad off and show it to others; again Perana helps her with this.

Carers were given a menstrual calendar to help them track and prepare for the young woman’s next menstrual cycle.

 

Training

Five facilitators were recruited to deliver the campaign. They were from the Down Syndrome Society Nepal and the Centre for Urban Integrated Development – so collectively they were experienced in working with people who have an intellectual impairment and delivering menstrual hygiene management programmes in the Kavre district.

The campaign was delivered across three group training sessions for ten participants and their carers – most of whom were part of the formative research. In the training we used a large Bishesta doll which has removable clothes, a soiled and clean menstrual pad and pain symbols (that can be put on places parts of the doll’s body where menstrual discomfort is experienced).

A large Bishesta doll as used in the training.WaterAid/Jane Wilbur
A large Bishesta doll, as used in the training, with pad and hot water bottle.

Participants practiced changing the doll’s soiled menstrual pad and disposing of it in the bin. The doll also had all the contents in the Period Packs, so people could practice using them with the doll before taking them away.

A small Bishesta doll (with a removable pad and underwear) was offered to the young women so they could practice changing her pad at home.

The Bishesta campaign ran from September to November 2018. Soon after I did an outcome evaluation to understand if anyone had changed their behaviour. But more on that in my next blog…

If you're interested in finding out more about Jane's groundbreaking campaign, read a more extensive report on the development of the Bishesta project4.

 

Footnotes

[1] WHO & WORLD BANK 2011. World report on disability.

[2] WILBUR, J., TORONDEL, B., HAMEED, S., MAHON, T. & KUPER, H. 2019. Systematic review of menstrual hygiene management requirements, its barriers and strategies for disabled people. PLOS ONE, 14, e0210974.

[3] ALTUNDAĞ, S. & CAKıRER CALBAYRAM, N. 2016. Teaching menstrual care skills to intellectually disabled female students. Journal of Clinical Nursing, 25, 1962–1968; HOLLINS, S. & SINASON, V. nd. Susan's Growing Up.

[4] WILBUR, J., BRIGHT, T., MAHON, T., HAMEED, S., TORONDEL, B., MULWAFU, W., KUPER, H. & POLACK, S. 2018. Developing Behaviour Change Interventions for Improving Access to Health and Hygiene for People with Disabilities: Two Case Studies from Nepal and Malawi. International Journal of Environmental Research and Public Health, 15, 2746.