RESUMEN

Multiple sclerosis (MS) is an acquired demyelinating disease of the central nervous system (CNS). Historically, research on MS has focused on White persons with MS. This preponderance of representation has important possible implications for minority populations with MS, from developing effective therapeutic agents to understanding the role of unique constellations of social determinants of health. A growing body of literature involving persons of historically underrepresented races and ethnicities in the field of multiple sclerosis is assembling. Our purpose in this narrative review is to highlight two populations in the United States: Black and Hispanic persons with multiple sclerosis. We will review the current understanding about the patterns of disease presentation, genetic considerations, response to treatment, roles of social determinants of health, and healthcare utilization. In addition, we explore future directions of inquiry as well as practical methods of meeting these challenges.

RESUMEN

AIMS: To explore how family functioning and family resilience mediate the relationship between disability severity and quality of home-based care among families with disabled older adults. METHODS: A cross-sectional survey was conducted with 431 families with Uygur and Kazakh disabled older adults in Xinjiang, China, in 2020. The data were collected using the Katz Activity of Daily Living Scale; Mini-Mental State Examination; Family Adaptation, Partnership, Growth, Affection and Resolve Index Scale; Family Resilience Assessment Scale; and Family Caregiving Consequences Inventory Scale. All mediation effects were estimated in SPSS26.0. RESULTS: Disability severity, family functioning and family resilience were all significantly correlated with home-based care quality. Disability severity had a 46.16% direct effect on home-based care quality and a 53.84% indirect effect on home-based care quality independently and in series through family functioning and family resilience. CONCLUSIONS: Disability severity directly affected home-based care quality and had an indirect influence via family functioning and family resilience. Multidisciplinary care teams should focus on families with disabled older adults and help them improve family functioning and family resilience by implementing targeted interventions, so as to improve home-based care quality.

Asunto(s)

RESUMEN

Background: The progressive realisation of disability inclusion requires political will and commitment, and comprehensive monitoring is necessary to give a clear understanding of what needs to be addressed and to highlight the gaps and barriers to the achievement of social inclusion of people with disabilities. Objectives: This article uses an existing dataset to present a baseline assessment of inclusion for men and women with no, mild or moderate disability severity and with no or moderate affect difficulties in South Africa. Methods: An existing dataset, capturing individual-level data for 8499 individuals, collected in 2019 across South Africa was analysed. Variables were utilised to represent aspects of nine domains of disability inclusion, and outcomes were compared using chi-squared tests (with Bonferroni adjustments) for groups categorised by disability severity and gender, and for affect severity and gender. Results: Overall, inclusion levels declined with increasing disability severity, and there were fewer differences in inclusion levels between those with and without affect difficulties than for those with functioning difficulties (as measured using the Washington Group on Disability Statistics' Short Set of six questions on functioning). Conclusions: The article concludes by discussing several approaches to using the data to design policy responses, each of which results in a different range of domains that may initially be prioritised and targeted.

RESUMEN

INTRODUCTION: Caring for the disabled elderly puts heavy burdens on their families. This study aimed to explore family function (FF) as a mediator in the relationship between disability severity (DS) and family burden (FB) of the Uygur and Kazakh home-dwelling disabled elderly cared for by informal caregivers in China. METHOD: A cross-sectional design with multistage sampling was used to recruit 431 families with Uygur and Kazakh disabled elderly in Bortala, Xinjiang, China. Data were collected using the Activities of Daily Living Scale, Family Burden Interview Schedule, and Family Adaptation, Partnership, Growth, Affection, and Resolve Index Scale and then analyzed using hierarchical regression. RESULTS: FF had a partial mediating effect on the relationship between DS and FB (ß = 0.131; 95% confidence interval [CI] = [0.074, 0.197]; p < .01); the effective rate was 41.46%. DISCUSSION: Multidisciplinary care teams should implement targeted interventions to improve FF of the disabled elderly to alleviate FB.

Asunto(s)

RESUMEN

BACKGROUND: Elders' disability severity and caregiver health could predict elders' informal care time, but the mechanism by which the degree of disability in the elderly affects informal care time is unclear. AIM: The aim of this works is to explore the mediating roles of caregiver health and home-based care quality between disability severity of elders and informal care time in far north-western low-income areas in China. METHOD: From September 2017 to February 2018, three hundred fifty-two dyads of Kazakh disabled elders and informal caregivers in Xinjiang were interviewed. Structural equation modelling analyses were applied. RESULTS: Significant positive correlations were observed between elders' disability severity and informal care time, caregiver health and informal care time, elders' disability severity and caregiver health. Significant negative correlations were observed between home-based care quality and informal care time, elders' disability severity and home-based care quality, caregiver health and home-based care quality. Elders' disability severity had 71.94% direct effect on informal care time, 28.06% indirect effect on informal care time mediated by home-based care quality and caregiver health. CONCLUSION: Caregiver health and home-based care quality play mediating roles on the path relationship between the elders' disability severity and informal care time.

Asunto(s)

RESUMEN

OBJECTIVE: To adapt and to combine the self-report Upper Extremity Functional Index and Lower Extremity Function Scale, for the assessment of disability severity in patients with a neuromuscular disease and to examine its psychometric properties in order to make it suitable for indicating disease severity in neuromuscular diseases. DESIGN: A cross-sectional postal survey study was performed among patients diagnosed with a neuromuscular disease. METHODS: Patients completed both adapted extremity function scales, questionnaires for psychometric evaluation, and disease-specific questions. Confirmatory factor analysis was performed, and reliability and validity were examined. RESULTS: Response rate was 70% (n = 702). The Extremity Function Index model with a two-factor structure - for upper and lower extremities - showed an acceptable fit. The Extremity Function Index scales showed good internal consistency (alphas: 0.97-0.98). The known-groups validity test confirmed that Extremity Function Index scales discriminate between categories of "Extent of limitations" and "Quality of Life." Convergent and divergent validity tests confirmed that Extremity Function Index scales measure the physical impact of neuromuscular diseases. Relative validity tests showed that the Extremity Function Index scales performed well in discriminating between subgroups of patients with increasing "Extent of limitations" compared to concurrent measurement instruments. CONCLUSION: The Extremity Function Index proved to be a sound and easy to apply self-report disability severity measurement instrument in neuromuscular diseases. Implications for rehabilitation The Extremity Function Index reflects the functioning of all muscles in the upper and lower extremities involved in activities of daily living. The Extremity Function Index is an easy to administer and patient-friendly disability severity measurement instrument that has the ability to evaluate differences in disability severity between relevant neuromuscular disease subgroups. The Extremity Function Index is a valid and reliable disability severity measurement instrument for neuromuscular diseases.

Asunto(s)

RESUMEN

To validate the proxy version of the Quality of Life after Brain Injury (QOLIBRI) questionnaire to utilize caregivers for comparison and to evaluate the correspondence between patients' self-perceived and caregivers' perception of patients' Health-Related Quality of Life (HRQoL). Ninety-two patients with severe TBI and their main caregivers were enrolled. Patients' and caregivers' HRQoL was assessed by the Patient-QOLIBRI (Pt-QOLIBRI) and the Proxy-QOLIBRI (Pro-QOLIBRI), respectively. The Pro-QOLIBRI is a modified version of the QOLIBRI to investigate caregivers' perception of patients' HRQoL (Pro-QOLIBRIpatient-centered), and their degree of satisfaction and botheredness (Pro-QOLIBRIcaregiver centered). The patients' disability and their social reintegration was investigated by means of Glasgow Outcome Scale Extended and Community Integration Questionnaire. Pro-QOLIBRI has good internal consistency and homogeneity. There was also positive correlation between the level of satisfaction measured by Pro-QOLIBRI but not by Pt-QOLIBRI, and the disability severity and social integration of the patients. The comparison between the Pt-QOLIBRI and Pro-QOLIBRI confirmed the usefulness of the Pro-QOLIBRI, especially the caregiver-centered version, to predict the social reintegration of survivors. To our knowledge this is the first study that correlates the HRQoL of survivors, as self-perceived and as perceived by the caregivers with social reintegration.

Asunto(s)

RESUMEN

This article reports research on self-regulatory aspects (i.e., goal-setting, self-efficacy and self-evaluation) of secondary and post-secondary students with congenital motor disabilities, who performed a ball-throwing-at-a-target task. Participants were divided into four subgroups presenting distinct combinations of motor and cognitive abilities (i.e., normal cognitive development and mild physical disabilities, normal cognitive development and severe physical disabilities, mild-to-moderate intellectual disability and mild physical disabilities, and mild-to-moderate intellectual disability and severe physical disabilities). Results showed that students presenting mild motor disabilities exhibited a positive self-concept and self-regulation profile, irrespective of their cognitive functioning. Students with considerable motor disabilities, but without cognitive challenges, presented a negative, though realistic self-concept and self-regulation profile. Finally, students with considerable motor disabilities and mild-to-moderate cognitive disabilities showed a positive, though unrealistic, self-regulation profile. The nature of the diverse relationship of motor and cognitive (dis)abilities to specific self-regulatory aspects are discussed, and important instructional implications are mentioned.

Asunto(s)

RESUMEN

Little is known about how special education services received by students with Autism Spectrum Disorders (ASDs) differ by age, disability severity, and demographic characteristics. Using three national datasets, the Pre-Elementary Education Longitudinal Study (PEELS), the Special Education Elementary Longitudinal Study (SEELS), and the National Longitudinal Transition Study-2 (NLTS2), this study examined the age trends in special education services received by students with ASDs from preschool through high school. Elementary-school students with ASDs had higher odds of receiving adaptive physical education, specialized computer software or hardware, and special transportation, but lower odds of receiving learning strategies/study skills support than their preschool peers. Secondary-school students had lower odds of receiving speech/language or occupational therapy and of having a behavior management program, but higher odds of receiving mental health or social work services than their elementary-school peers. Both disability severity and demographic characteristics were associated with differences in special education service receipt rates.