Elin Hjorth

In my doctoral project I investigate experiences of living with severe Spinal muscular atrophy (SMA) (Type I-II). SMA affects children and the disease is characterized by progressive muscle weakness. No present curative treatment is available. Affected families face a life with daily care and nursing, recurrent hospitalizations and difficult decisions regarding the child's treatment, including the decision if/when respiratory support should introduced. The project includes both the parents' experiences of care, and the child´s and the family’s experience of living with the disease. With increased knowledge, the hope is to contribute to a better care for ill children and their families.