#ChooseToChallenge: Challenging stigma and empowering mothers of children with disability in Rwanda

Mothers of children with disability have been choosing to challenge the discrimination and exclusion they can face in their communities, with the support of the ABAaNA Early Intervention Programme, a participatory, group rehabilitation programme for children with developmental disability and their families, embedded within a Paediatric Development Clinic (PDC) in Eastern Rwanda

Around the world, 53 million children are affected by developmental disability. The majority live in countries like Rwanda, where access to specialist services are often limited and the emotional, social and financial impacts on families, and specifically women, is very high.

The ABAaNA Early Intervention Programme is an innovative, community-based intervention designed to be delivered in settings without specialist therapy services through a collaborative process between women caregivers, therapists and researchers. The programme aims to empower primary caregivers, almost exclusively women in rural Rwanda, to care for their child, maximise their child’s developmental potential and optimise quality of life through skill building, peer-support, and experience exchange to promote inclusion and reduce discrimination and self-stigma.

“In terms of empowerment, for example… I used to hide in the bushes near our church while feeding my child but after [the early intervention] group  I learned my child’s right – that he has equal rights like others. Since then, I can confidently feed him, and play games with him with special care. The greatest empowerment gained from the group is that we liberated ourselves from loneliness, guiltiness, and shame. We feel confident, because when you are liberated from all of these, you know how to cope with each and every circumstance, problem or consequence.”  – Eugenie

Through the THET Africa Grants Programme, Partners In Health/Inshuti Mu Buzima and University College London Hospital have worked in partnership to train 22 social workers and expert parents to facilitate the ABAaNA programme to enhance the comprehensive services offered through the PDC in Eastern Rwanda, which provides specialist follow up, counselling and integrated clinical, nutritional and developmental care to high-risk infants.

During 2019-20, we have had 109 families attend the programme, and a further 67 families will be starting the programme this year. The attendance at the groups has been excellent, 95.4%! Pre and post assessments of the mothers’ quality of life has shown an average 20% reported improvement in quality of life, demonstrating the amazing impact of the PDC/Early Intervention programme.

Eugenie gives powerful personal testimony to the transformative impact of the programme for her child, her family and the wider community in the longer term;

“As mothers of children with developmental disability we now know how to take care of our children, we understand well our children’s conditions and how to support our children, we learned how to stay strong and embrace our biggest challenges like stigma. And therefore, the skills and confidence built in mothers will help our entire communities through our acts, like for instance if she never used to take out the child, playing, clothing and paying attention to child’s cleanliness and start doing it differently, this will benefit the community at large too and they will learn a big lesson from that.”

Moving forward Eugenie would like to continue to share what she has learnt and “advocate for these children in my community and let the mothers’ voice be heard, because community stigma is the big hindrance to our children’s growth.”  She is definitely ‘Choosing to Challenge’ and make an impact!

– Cally Tann, Associate Professor, London School of Hygiene & Tropical Medicine