A Mother’s Experience: a report on the social and psychological experiences of mothers raising children with Prader-Willi syndrome
At IPWSO, we engage with families from all backgrounds and cultures to provide support for people with Prader-Willi syndrome globally. It is particularly critical for us to advocate for mothers of children with Prader-Willi syndrome, who are often the primary provider of longterm caregiving for their child with a rare disease. It is important for IPWSO to work on providing mothers of children with Prader-Willi syndrome with adequate support to ensure that the specific needs of families with PWS are addressed.
This year we worked with a student, Vandana Venkat from the London School of Economics, to research more deeply into the role of mothers as caregivers to children with PWS. In this report, Vandana worked towards understanding the social and psychological experiences of mothers raising children with PWS.
Vandana interviewed mothers of children with Prader-Willi syndrome around the world and made a number of recommendations based on the information she gathered. In particular, she noted the need for:
- Greater psychological support for mothers around the world,
- Increased accessibility to resources,
- Strengthening cultural sensitivity and regional support, especially in the Asian and African regions,
- Expanding research, specifically age-based Prader-Willi research on the link between the development of maladaptive behaviours with maternal stress.
The report has been extremely thought provoking for us and these recommendations will feed into our work planning for 2023.
We are very grateful to Vandana for her work on this project which has been been very valuable.