PubMed · 15884300
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Stephen Wright. When dignity kills.. https://doi.org/10.7748/ns.19.33.30.s33
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Siblings of persons with mental illness who assume primary caregiving roles experience substantial and tangible economic impacts associated with this responsibility. This study investigated mailed survey responses collected from 156 adult siblings of persons with mental illness from New York State to examine instrumental costs associated with providing support to siblings with illness. Genders of both siblings, severity of the relatives' mental illness, and number of surviving parents in the family distinguished those occupying primary caregiving responsibility from those not in primary roles. Current caregivers incurred greater instrumental costs in the form of financial expenses, time spent in care activities, and crisis involvement than did those who were not primary care providers. Additional demographic and behavioral factors related to siblings with and without illness were associated with specific dimensions of instrumental expenditure. As siblings become increasingly engaged in caregiving, social service professionals must assume leadership in promoting programs and policies that meaningfully support family involvement for relatives with mental illness.
In many areas of research, repeated binary measures often represent a two-state stochastic process, where individuals can transition among two states. In a behavioural or physical disability setting, individuals can flow from susceptible or subthreshold state, to an infectious or symptomatic state, and back to a subthreshold state. Quite often the transition among the states happens in continuous time but is observed at discrete, irregularly spaced timepoints which may be unique to each individual. Methods for analyses of such data are typically based on the Markov assumption. Cook (Biometrics 1999; 55:915-920) introduced a conditional Markov model that accommodates the subject-to-subject variation in the model parameters with random effects. We extend this model by adding a non-ignorable dropout component to the model. Specification of the distribution of the random effects is made to guarantee a closed form expression of the marginal likelihood. This methodology is illustrated by applications to a data set from a parasitic field infection survey, a data set from a cocaine treatment study, and a data set from an aging study. Simulations suggest that the shared parameter model is robust with respect to at least one alternative non-ignorable model.
PURPOSE: The purpose of this study was to examine functional ability in people with SLE by comparing a self-report and a performance-based test. METHOD: Fifteen women with SLE and 15 healthy controls participated in this study. Participants completed a self report of daily living skills, the Health Assessment Questionnaire (HAQ). Actual performance during activities of daily living was evaluated with the Assessment of Motor and Process Skills (AMPS). Measures of cognition and disease activity were also collected. RESULTS: HAQ scores of the participants with SLE indicated only very mild disability while scores on the AMPS indicated ineffective skill performance and potential safety risks. In the participants with SLE, cognitive status correlated significantly with the processing component (r(s) = 0.62, p < 0.05) and disease severity correlated with the motor component of the AMPS (r(s) = 0.84, p < 0.001). The HAQ did not correlate with the AMPS. CONCLUSIONS: This study suggests that cognitive deficits were more related to scores on the performance-based test of functional ability rather than the self-report. The performance-based test appeared to provide information that was not gained through self-report and measures of disease activity and gross cognition.