Understanding mothers’ experiences through narrative analysis
A study was recently published in « Qualitative Health Research ». Even if this study was made for Prader Willy Syndrome, the results and recommendations that result can apply to any rare disorder. Researchers identified themes focusing on the complexity and rarity of the disorder, including the desire to be normal, how ordinary becomes extraordinary, isolation, behavior and normative standards, and alternative stories of mothering. Based on these results, four key recommendations could be established:
- Recognition of the challenges of mothering a child with complexity;
- Moving beyond functionality and impairment to participation and quality of life;
- Considering anew how to tell the families stories and their need for support ;
- Engaging with mothers to determine care priorities.
The findings of this study highlight how more qualitative research methods such as narrative analysis can be used in rare disease research to identify care and policy priorities to improve the lives of people living with a rare disease and their families.
(orphanews international 2024.02.13)
