Intervention with hand orthosis: experience from boys with Duchenne muscular dystrophy and their parents.

Abstract

To identify and describe possible ways of experiencing an intervention with hand orthoses in a study group including boys with Duchenne muscular dystrophy (DMD) and their parents. To capture the experiences of the persons directly involved as well as their family members. Eight boys with DMD (aged 8-21; median age 17.7) and five of their parents were interviewed immediately post-intervention. Additionally, follow-up interviews were later performed with five boys and three parents. Ten categories of intervention experiences emerged and were allocated to three aspects: "Prerequisites in the treatment situation", "The intervention makes a difference" and "Instilling hope for the future". The requirements for intervention success include co-operation with parents and hand orthoses with a good fit. Maintained or increased joint mobility, reduced pain and improved occupational performance were experienced. The boys and parents perceived that the intervention with hand orthoses could counteract the deterioration of the boys' hands. This instilled hope of preserving occupational performance throughout life. They also considered that a good hand-orthosis fit, appropriate adjustments to daily routines and good co-operation with the people around them were important for the intervention to be and remain successful.