How do people with Hereditary Spastic Paraparesis experience Physical Therapy?
The user perspective is an important contribution in evolving knowledge-based practice as well as developing high-quality health care services. Hereditary Spastic Paraparesis (HSP) is a rare neurodegenerative disease causing spasticity and paresis of the lower limbs, as well as impairments in gait and balance. Physical therapy is one of the recommended interventions to manage the condition. Research on this field of expertise is scarce, indicating an area within neurological physical therapy that has been neglected and was in need for further examination. The informants highlighted how community-based physical therapy is characterized by passive strategies, mainly stretching of affected musculature, with has non or short-lasting effect on experienced stiffness. Moving in full range of motion (ROM) was perceived as important of preventing limited mobility in the lower extremities. The least affected informants often included full ROM as a part of active exercise or self-stretching exercises, while the most affected depended on manual stretching by the physical therapist. Intensive activity in weight-bearing positions and with good movement quality is the preferred interventions to maintain function and slow down progression, reflecting aspects of the possibility of motor learning an positive neuromuscular plasticity. It was conducted a part of self-initiated exercise or during in-patient rehabilitation stays in specialist health care. A good interpersonal relationship with the therapist is weighted as important for a positive experience with physical therapy and to maintain motivation to continue. Furthermore, informants report lack of knowledge regarding HSP at local therapists, as well as limitations in availability in both community-based and specialist heath care. This have an impact on both the quality and amount of physical treatment. Goal setting in therapy was not common, reflecting low expectations of the possibility to influence functional problems or primary neuropathology in persons with HSP.
ForlagUiT Norges arktiske universitet
UiT The Arctic University of Norway
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