PubMed · 11890504
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P K Loh, M Donaldson, U Adams, E Ong. 2001. Night functional dependency index.. https://doi.org/10.1046/j.1532-5415.2001.49274.x
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PURPOSE: The purpose of this qualitative study was to describe the perceived quality of life (PQOL) of adults with significant disabilities who were living in community settings. METHODS: Six male and six female volunteers (mean age 48 years, standard deviation 14 years), half with developmental and half with acquired disabilities, were interviewed about their quality of life. The interviews were audio-taped and transcribed verbatim. Text units were identified in the narrative data and were coded, sorted, and entered in an Index Tree. Data analysis utilized the Constant Comparison Technique with underlying themes emerging in 11 areas. RESULTS: The highest PQOL was noted in Health and Housing; the lowest in Transportation/Physical Accessibility and Employment. Deficits in Transportation/Physical Accessibility compromised PQOL in other areas. In regards to employment, seasonal, part-time and occasional work were common, and assistive technology and computers were rarely used to enhance employment capabilities. PQOL depended on the availability of appropriate supports and services, and tended to differ between those with developmental and those with acquired disabilities. CONCLUSION: Policy makers and advocacy groups could best improve the PQOL for those with severe disabilities by facilitating transportation and employment services.
PURPOSE: The purpose of this paper is to make a critical analysis of the conceptual platform of the recently introduced International Classification of Functioning, Disability and Health (ICF). Special attention is paid to the suggested definitions of the concepts of activity and participation. My argument intends to show that these definitions are not coherent. METHOD: The theoretical platform of this paper is philosophical action theory. My argument makes particular use of the distinction between capacity and opportunity and shows that both concepts are applicable to all actions. Capacity and opportunity are distinguished from the actual performance of actions. The latter presupposes the existence of a will. On this conceptual basis follows an analysis of the distinction between activity and participation as conceived by the WHO in ICF. CONCLUSIONS: The main conclusion of my reasoning is that the notions of activity and participation in ICF partly rest on confusion between capacity for action and the actual performance of an action. If my conclusion is sound this has far-reaching consequences for the application of the ICF in the practice of rehabilitation. My diagnosis therefore is that the conceptual framework of ICF is in great need of a strict action--theoretic reconstruction.
PURPOSE: To describe the profile of Multiple Sclerosis (MS) patient caregivers and assess their caregiving burden. METHODS: A total of 91 MS patients, recruited from a Spanish longitudinal survey, and their corresponding caregivers were studied. Caregivers were administered a questionnaire that collected social and demographic data, and a generic caregiver burden interview (the Zarit scale). Furthermore, MS patients were administered a specific health-related quality of life (HRQoL) instrument (the modified Spanish version of the Functional Assessment of Multiple Sclerosis). RESULTS: 24.5% of the sample required caregivers to perform activities of daily life. Caregiver profile was as follows: 67% female; mean age, 51.5 +/- 14.1 years; and mean daily time devoted to care, 11.5 +/- 8.2 h. Most caregivers had some type of support, 67% informal and 31.9% formal. The amount of time spent in caring for relatives was the main item determining the burden of MS-patient caregivers. Moreover, MS patient's HRQoL showed a moderate inverse correlation with caregiver burden. CONCLUSIONS: In contrast to previous studies, most Spanish MS-patient caregivers are female, and there is a considerable percentage of parent caregivers. A greater degree of formal support and an improvement in MS patients' HRQoL may serve to reduce caregiver burden.