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Retrospective self-report is typically used for diagnosing previous pediatric traumatic brain injury (TBI). A new semi-structured interview instrument (New Mexico Assessment of Pediatric TBI; NewMAP TBI) investigated test–retest reliability for TBI characteristics in both the TBI that qualified for study inclusion and for lifetime history of TBI.
Method:
One-hundred and eight-four mTBI (aged 8–18), 156 matched healthy controls (HC), and their parents completed the NewMAP TBI within 11 days (subacute; SA) and 4 months (early chronic; EC) of injury, with a subset returning at 1 year (late chronic; LC).
Results:
The test–retest reliability of common TBI characteristics [loss of consciousness (LOC), post-traumatic amnesia (PTA), retrograde amnesia, confusion/disorientation] and post-concussion symptoms (PCS) were examined across study visits. Aside from PTA, binary reporting (present/absent) for all TBI characteristics exhibited acceptable (≥0.60) test–retest reliability for both Qualifying and Remote TBIs across all three visits. In contrast, reliability for continuous data (exact duration) was generally unacceptable, with LOC and PCS meeting acceptable criteria at only half of the assessments. Transforming continuous self-report ratings into discrete categories based on injury severity resulted in acceptable reliability. Reliability was not strongly affected by the parent completing the NewMAP TBI.
Conclusions:
Categorical reporting of TBI characteristics in children and adolescents can aid clinicians in retrospectively obtaining reliable estimates of TBI severity up to a year post-injury. However, test–retest reliability is strongly impacted by the initial data distribution, selected statistical methods, and potentially by patient difficulty in distinguishing among conceptually similar medical concepts (i.e., PTA vs. confusion).
‘What is needed nowadays is that as against an abstract and unreal theory of State omnipotence on the one hand, and an atomistic and artificial view of individual independence on the other, the facts of the world with its innumerable bonds of association and the naturalness of social authority should be generally recognized, and become the basis of our laws, as it is of our life.’
Recovering the human
‘Human rights’ – here are two words expressing two different normative domains. Most simply assume that the two are mutually reinforcing, mutually implicated by each other, coterminous and coeval. Everywhere in the world, first-year law students are routinely told that we enjoy human rights simply because we are human. The question of whether there are any essential criteria of being human or of ‘personhood’ and, if so, what they are, is left dangling as if solved by the conjuncture of ‘human’ with ‘rights’. That is, rights-talk tends to cloud our view of what it means to be human. And rights tend to impute a certain view of humanity – one that is not necessarily tied to observable reality. Another result is the absence of any clear toeholds in the slippery debate about whether there are any non-human ‘persons’ (e.g. animals or even the earth) and, if so, whether they are the proper subject of rights.
Member States are generally taking a civil rights approach to disability: from seeing people with disabilities as the passive recipients of benefits, they acknowledge the legitimate demands of people with disabilities for equal rights. Accordingly, they are making efforts to develop policies that aim at the full participation of people with disabilities into the economy and society. It implies equal opportunities, empowerment and active citizenship in mainstream society.
Introduction – the emergence of the rights-based approach to disability in the EU
The main purpose of this chapter is to assess the significance and future potential of the Framework Employment Directive in the specific context of disability.
A recent report by the European Foundation for the Improvement of Living and Working Conditions on the status of persons with disabilities in Europe makes for sober reading. It recalls that disability (which it combines with chronic illness) affects 17 per cent of Europe's general population and about 15 per cent of the working population. Disabled people are reported to have twice the rate for non-participation in the labour market as compared to persons without disabilities. The unemployment rate for persons with a severe disability is about three times the level for non-disabled persons. Workers with disabilities typically receive a lower wage than others and segregation is reported to begin at an early age ‘with children often pushed into parallel education networks or otherwise excluded from mainstream society’.
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