Hand function, Everyday Occupations and Wellbeing in Individuals with Systemic Sclerosis

Abstract: Systemic sclerosis (scleroderma) is a connective tissue disease which, in various ways, influences an individual’s ability to participate in everyday occupations. The general objective of this work was to elucidate the consequences of scleroderma with respect to hand function, everyday occupations and wellbeing, in order to provide a knowledge base suitable for occupational therapy interventions. The thesis is based on five describing studies, including a total of 110 individuals with scleroderma, mostly women. Standardised tests of hand function, questions on symptoms, and questionnaires and semi-structured interviews were used to assess occupational performance and wellbeing. The following results were obtained. Functioning of the hand varied considerably from normal to severe impairment. Mobility in the hands was above all impaired concerning finger flexion and extension, and grip force was reduced to about 50% of healthy persons. The hand function test, Hand Mobility in Scleroderma (HAMIS) proved to be a valid and reliable screening test of hand mobility in scleroderma. Many occupations requiring hand function were difficult to perform, and short disease duration, decreased hand function, stiffness, Raynaud’s phenomenon, shortness of breath, as well as fatigue and pain seemed to have great influence on ADL and occupational performance. Loss of occupations, dissatisfaction with leisure, perceived fatigue, shortness of breath, and pain were risk factors for decreased wellbeing. There were indications that intervention with paraffin bath and hand exercise improved finger mobility and grip force, and ADL difficulties decreased significantly when using assistive devices or alternative working methods compared with performing the activities in a normal manner. In occupational therapy treatment it is important to elucidate a person’s skills and capacities, especially within leisure occupations. Interventions should focus on supporting good hand function and helping the individuals maintain their ability to perform valued occupations and to establish coping mechanisms in the early phase of the disease.