Objective: To assess upper extremity functioning of children with unilateral transverse upper limb reduction deficiency, using standardized instruments, and to investigate their validity and reliability. Design: Cross-sectional study. Subjects: Twenty subjects aged 4-12 years; 9 prosthetic users and 11 non-users. Methods: The Assisting Hand Assessment, Unilateral Below Elbow Test, Prosthetic Upper extremity Functional Index and ABILHAND-Kids were assessed in all children. Users were tested with and without their prosthesis. We compared results of users and non-users, and of users with and without their prosthesis. Validity was determined by testing hypotheses and correlations with other measures. Test-retest reliability was assessed from repeated measurements in 10 children. Results: Children with an upper limb reduction deficiency performed well on daily activities. They could use their prosthesis in 68% of the activities, but were currently using it in only 30%. Children find their prosthesis useful for specific activities, rather than for daily activities in general. The Assisting Hand Assessment and Prosthetic Upper extremity Functional Index showed best validity; test-retest reliability was good to excellent. Conclusion: The use of standardized instruments adds relevant information on functioning of children with an upper limb reduction deficiency. We found additional support for validity and reliability of, in particular, the Assisting Hand Assessment and Prosthetic Upper extremity Functional Index.Key words: upper extremity, prostheses and implants, activities of daily living, outcome assessment (healthcare), reproducibility of results.
Background: Adults with cerebral palsy (CP) may experience an increasing impact of their disability on daily life and this may interfere with their citizenship. Citizenship is a layered construct. Next to formal and theoretical significations, and civil rights acts such as the UN Convention on the Rights for Persons with Disabilities (CRPD), the meaning of citizenship is formed by the person themselves. The present study aimed to gain insight into what citizenship means for adults with CP 40 years or older and what is needed to support and pursue their citizenship to improve person-centered rehabilitation which can facilitate this process.Methods: Adults with CP (>40 years) without intellectual disability were recruited from medical records of a large rehabilitation center to participate in a qualitative study using the photovoice method. Participants were asked to take photos of objects or life situations that constituted citizenship for them; these photos were then the prompts for the semi-structured interviews that were held face-to-face at their homes. Background and clinical characteristics were gathered using a short face-to-face questionnaire. Data were analyzed through inductive thematic analysis.Results: Nineteen adults participated [mean age (SD) 57.8 (9.4) years (range 44–79), six men]. From the analysis four themes emerged: (a) Meanings of citizenship; (b) Citizenship: Facilitator and barriers; (c) Paradoxes of support and participation; and (d) Future. Furthermore, next to the ability to participate in society without restrictions, sense of belonging was reported to be an important aspect of “meanings of citizenship.” The physiotherapist was perceived as an important health professional to maintain physical activity and deal with the impact of aging with CP on daily activities. Complex healthcare and support services regulations and aging affected citizenship negatively.Conclusion: Middle-aged and older adults with CP view citizenship as the ability to participate and belong in society. To optimize their citizenship the challenges and individual needs must be seen and supported by person-centered rehabilitation and support services. Simplification of complex healthcare and services regulations can further improve citizenship.
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