Purposeful hand use, assessment and profound disability

Assessments of hand skill performance traditionally follow age and normal development. Causes like trauma, illness or signs of delayed development have been reasons to develop specific measures or tests to investigate and... [ view full abstract ]

Assessments of hand skill performance traditionally follow age and normal development. Causes like trauma, illness or signs of delayed development have been reasons to develop specific measures or tests to investigate and evaluate the patients hand skills. Examination by the use of questionnaires, observations, tests as well as play or everyday activities are used and ending up in e.g. descriptions, levels and scoring measures.
There is a large variation in the severe neurodevelopmental disorder Rett syndrome (RTT) expressions of symptom and the consequences of the disorder. It is a profound disorder with expression of body functions, such as dystonia, dyspraxia, breathing dysrhyhtmia and lack or loss of speech. Central to the symptoms caused by RTT is a loss of acquired hand skills, usually described as a loss of purposeful hand use and frequent stereotypic hand movements visible such as squeezing, tapping, wrinkling hand moves. Little is published concerning assessing and management of hand function in RTT. Previous studies focus on hand function of grasping and holding skills as well as hand stereotypic.
The purpose is to highlight the usefulness of hand skill by presenting a RTT case. The focus is hand function as a receiver with capacity to discover, explore and act by means of a supporting environment. Experiences are based on clinical work as an Occupational therapist at the National Swedish Rett Center. The center performs specialized medical care, research and education since 1995 and serves as a center of cross professional competence.