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1.
Siglo cero (Madr.) ; 54(4): 49-64, oct.-dic. 2024. tab, graf
Artículo en Español | IBECS | ID: ibc-EMG-558

RESUMEN

El paradigma de apoyos y el de calidad de vida se han transformado en guías fundamentales para los avances en el ámbito de la discapacidad intelectual (DI). Con base en una muestra de 93 personas adultas con DI, se analiza, desde un enfoque cuantitativo no experimental, la relación entre la calidad de vida y las necesidades de apoyo, aplicando la escala INICO-FEAPS y la escala de Intensidad de Apoyos (SIS) para cada constructo. Los principales resultados evidencian que existe una relación fuerte e indirecta entre calidad de vida y necesidades de apoyos, y también la relevancia de analizar dichos resultados desde variables como grado de discapacidad, sexo o nivel socioeconómico. La discusión permite inferir la necesidad de discutir nuevas estrategias en torno a categorías como el grado de discapacidad, la autodeterminación e inclusión social, como elementos facilitadores de la calidad de vida y apoyos desde un enfoque integral que contribuya al desarrollo de estrategias de programas sociales para la población con DI. (AU)


The support paradigm and the quality of life paradigm have become fundamental guides for progress in the field of Intellectual Disability (ID). Based on a sample of 93 adults with ID, the relationship between Quality of Life and Support Needs is analyzed from a non-experimental quantitative approach, applying the INICO-FEAPS scale and the SIS Support Intensity scale for each construct. The main results show that there is a strong and indirect relationship between quality of life and support needs, and the relevance of analyzing these results from variables such as the degree of disability, sex or socioeconomic level. The discussion allows us to infer the need to discuss new strategies around categories such as the degree of disability, self-determination and social inclusion, as facilitating elements of quality of life and supporting a comprehensive approach that contributes to the development of social program strategies for the population with ID. (AU)


Asunto(s)
Humanos , Adulto Joven , Adulto , Discapacidad Intelectual , Calidad de Vida , Personas con Discapacidad , Chile , Muestreo
2.
Siglo cero (Madr.) ; 54(4): 85-120, oct.-dic. 2024. ilus, tab, graf
Artículo en Español | IBECS | ID: ibc-EMG-560

RESUMEN

La metodología de Planificación Centrada en la Persona (PCP) cada vez tiene mayor impacto en España. Comenzando desde las distintas legislaciones que regulan la atención a este colectivo en las diferentes autonomías y terminando en los centros que proveen este servicio. No obstante, existe escasa literatura internacional de estudios empíricos a grandes escalas que sitúen este enfoque metodológico en una posición relevante que garantice la eficacia de la PCP. El objetivo principal de este estudio es conocer el estado del uso de la metodología de PCP a través de estudios avalados empíricamente que sostengan tanto beneficios como limitaciones durante los últimos 10 años (2012-2022). Para ello, se ha realizado una revisión sistemática desde las directrices de PRISMA (2020), que incluye un total de 31 artículos. Como conclusión, se han descubierto más beneficios que limitaciones entre las que destacan las ventajas en su uso para las personas con discapacidad intelectual y del desarrollo y las mejoras de aspectos relacionados con la autodeterminación. No obstante, las limitaciones prevalecen por la falta de apoyos y recursos adecuados de las organizaciones para responder a una planificación centrada en la persona y la necesidad de formación de las personas implicadas en la elaboración de la PCP, lo que genera la incógnita de si se están realizando buenas prácticas en el uso de dicha metodología. (AU)


The methodology of Person Centered Planning (PCP) is having an increasing impact in Spain. Starting from the different legislations that regulate the attention to this group in the different autonomous regions and ending in the centers that provide this service. However, there is little international literature on large-scale empirical studies that place this methodological approach in a relevant position to guarantee the efficacy of PCP. The main objective of this study is to know the status of the use of PCP methodology through empirically supported studies that sustain both benefits and limitations during the last 10 years (2012-2022). For this purpose, a systematic review has been conducted since the PRISMA guidelines (2020), including a total of 31 articles. As a conclusion, more benefits than limitations have been found, among which the advantages in its use for people with intellectual and developmental disabilities and improvements in aspects related to self-determination stand out. However, limitations prevail due to the lack of adequate support and resources from organizations to respond to person-centered planning and the need for training of the people involved in the development of the PCP, which raises the question of whether good practices are being carried out in the use of this methodology. (AU)


Asunto(s)
Discapacidades del Desarrollo , Discapacidad Intelectual , Personas con Discapacidad , España
3.
Siglo cero (Madr.) ; 54(4): 49-64, oct.-dic. 2024. tab, graf
Artículo en Español | IBECS | ID: ibc-229228

RESUMEN

El paradigma de apoyos y el de calidad de vida se han transformado en guías fundamentales para los avances en el ámbito de la discapacidad intelectual (DI). Con base en una muestra de 93 personas adultas con DI, se analiza, desde un enfoque cuantitativo no experimental, la relación entre la calidad de vida y las necesidades de apoyo, aplicando la escala INICO-FEAPS y la escala de Intensidad de Apoyos (SIS) para cada constructo. Los principales resultados evidencian que existe una relación fuerte e indirecta entre calidad de vida y necesidades de apoyos, y también la relevancia de analizar dichos resultados desde variables como grado de discapacidad, sexo o nivel socioeconómico. La discusión permite inferir la necesidad de discutir nuevas estrategias en torno a categorías como el grado de discapacidad, la autodeterminación e inclusión social, como elementos facilitadores de la calidad de vida y apoyos desde un enfoque integral que contribuya al desarrollo de estrategias de programas sociales para la población con DI. (AU)


The support paradigm and the quality of life paradigm have become fundamental guides for progress in the field of Intellectual Disability (ID). Based on a sample of 93 adults with ID, the relationship between Quality of Life and Support Needs is analyzed from a non-experimental quantitative approach, applying the INICO-FEAPS scale and the SIS Support Intensity scale for each construct. The main results show that there is a strong and indirect relationship between quality of life and support needs, and the relevance of analyzing these results from variables such as the degree of disability, sex or socioeconomic level. The discussion allows us to infer the need to discuss new strategies around categories such as the degree of disability, self-determination and social inclusion, as facilitating elements of quality of life and supporting a comprehensive approach that contributes to the development of social program strategies for the population with ID. (AU)


Asunto(s)
Humanos , Adulto Joven , Adulto , Discapacidad Intelectual , Calidad de Vida , Personas con Discapacidad , Chile , Muestreo
4.
Siglo cero (Madr.) ; 54(4): 85-120, oct.-dic. 2024. ilus, tab, graf
Artículo en Español | IBECS | ID: ibc-229230

RESUMEN

La metodología de Planificación Centrada en la Persona (PCP) cada vez tiene mayor impacto en España. Comenzando desde las distintas legislaciones que regulan la atención a este colectivo en las diferentes autonomías y terminando en los centros que proveen este servicio. No obstante, existe escasa literatura internacional de estudios empíricos a grandes escalas que sitúen este enfoque metodológico en una posición relevante que garantice la eficacia de la PCP. El objetivo principal de este estudio es conocer el estado del uso de la metodología de PCP a través de estudios avalados empíricamente que sostengan tanto beneficios como limitaciones durante los últimos 10 años (2012-2022). Para ello, se ha realizado una revisión sistemática desde las directrices de PRISMA (2020), que incluye un total de 31 artículos. Como conclusión, se han descubierto más beneficios que limitaciones entre las que destacan las ventajas en su uso para las personas con discapacidad intelectual y del desarrollo y las mejoras de aspectos relacionados con la autodeterminación. No obstante, las limitaciones prevalecen por la falta de apoyos y recursos adecuados de las organizaciones para responder a una planificación centrada en la persona y la necesidad de formación de las personas implicadas en la elaboración de la PCP, lo que genera la incógnita de si se están realizando buenas prácticas en el uso de dicha metodología. (AU)


The methodology of Person Centered Planning (PCP) is having an increasing impact in Spain. Starting from the different legislations that regulate the attention to this group in the different autonomous regions and ending in the centers that provide this service. However, there is little international literature on large-scale empirical studies that place this methodological approach in a relevant position to guarantee the efficacy of PCP. The main objective of this study is to know the status of the use of PCP methodology through empirically supported studies that sustain both benefits and limitations during the last 10 years (2012-2022). For this purpose, a systematic review has been conducted since the PRISMA guidelines (2020), including a total of 31 articles. As a conclusion, more benefits than limitations have been found, among which the advantages in its use for people with intellectual and developmental disabilities and improvements in aspects related to self-determination stand out. However, limitations prevail due to the lack of adequate support and resources from organizations to respond to person-centered planning and the need for training of the people involved in the development of the PCP, which raises the question of whether good practices are being carried out in the use of this methodology. (AU)


Asunto(s)
Discapacidades del Desarrollo , Discapacidad Intelectual , Personas con Discapacidad , España
5.
PLoS One ; 19(5): e0301718, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38768147

RESUMEN

OBJECTIVE: To analyze the perceptions of professionals, caregivers, children, and adolescents with disabilities regarding the implementation of the My Abilities First (MAF) tool in Specialized Child Rehabilitation Centers (CERs). METHOD: This is a qualitative research based on Reflexive Thematic Analysis (RTA). The study involved twenty-seven intentionally selected individuals, comprising 12 physiotherapists, 4 occupational therapists, 11 caregivers, 9 children and 2 adolescents. Participants completed sociodemographic and clinical questionnaires and took part in semi-structured online interviews, focusing on two themes: Positive health approaches and the MAF tool. The study was approved by the local ethics committee (opinion 4.779.175). RESULTS: Reflexive Thematic Analysis of the interviews resulted in two themes: (1) Perceptions regarding the MAF tool as an educational and contributory process to enhance the inclusion and participation of children and adolescents with disabilities, and (2) Barriers and facilitators for the implementation process of the MAF tool. The implementation of MAF was identified as a driving factor in promoting equity and increased participation of children and adolescents with disabilities in various settings, including health, education, and leisure. Interviewees highlighted the need to confront attitudinal, communication, and social barriers that may hinder the implementation of the tool. CONCLUSION: The implementation of the MAF tool was perceived as an innovation due to its focus on the abilities of individuals with disabilities. However, there is a need to restructure it to broaden its scope and access to different contexts in order to confront barriers and enhance the inclusion and participation of children and adolescents with disabilities.


Asunto(s)
Cuidadores , Niños con Discapacidad , Investigación Cualitativa , Humanos , Adolescente , Niño , Femenino , Masculino , Cuidadores/psicología , Niños con Discapacidad/psicología , Adulto , Percepción , Personas con Discapacidad/psicología , Encuestas y Cuestionarios , Terapeutas Ocupacionales/psicología
6.
PLoS One ; 19(5): e0303911, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38768173

RESUMEN

PURPOSE: In this study, it is aimed to determine personal wellbeing and social participation levels across different physical disability types and levels of mobility. METHODS: A sample of 85 individuals with physical disabilities, excluding those with mental disabilities were included. Sociodemographics, mobility of the participants, cause, duration of disability were recorded. Personal Wellbeing Index-Adult (PWI-A) scale was used for the assessment of wellbeing and Keele Assessment of Participation (KAP) for social participation. RESULTS: Female, single, unemployed subjects and individuals with neurologic disability showed significantly higher median KAP-scores(p = 0.009, p = 0.050, p<0.001, p = 0.050, respectively).The median KAP-score of the independently mobile group was significantly lower compared to the other two groups (p = 0.001). The factors affecting KAP were determined as employment, mobility level and personal wellbeing (p = 0.002, p = 0.024, p = 0.050, respectively). CONCLUSION: Mobility level, employment and personal wellbeing are the determinants of social participation in people with disabilities. Neurological disability, female gender, being single, unemployment and mobility limitations are factors that reduce social participation.


Asunto(s)
Personas con Discapacidad , Participación Social , Humanos , Femenino , Masculino , Personas con Discapacidad/psicología , Participación Social/psicología , Adulto , Persona de Mediana Edad , Empleo , Adulto Joven , Anciano
7.
PLoS One ; 19(5): e0301344, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38768237

RESUMEN

INTRODUCTION: During the COVID-19 pandemic, a set of social measures were adopted for the preservation of business activity and the protection of workers. One of these measures was issuing the Temporary Disability (TD) for COVID-19 cases, close contacts, and especially vulnerable workers. OBJETIVE: This study analyzes whether the TD registry could be used as a complementary source to traditional epidemiological surveillance. METHODS: A longitudinal study of time series was carried out with a cross-correlation analysis of TD and COVID-19 cases reported to the National Epidemiological Surveillance Network (RENAVE). The analysis included six pandemic waves between 10/03/2020 and 31/12/2021 in Spain. Cross-correlation coefficients (r) were calculated using a time lag of -14 days. RESULTS: During the study period, 2,253,573 TD processes were recorded in Spain and 4,894,802 COVID-19 cases were reported to RENAVE. Significant positive correlations were observed at time lags of -7, -10, and -14, indicating that TD notification preceded RENAVE notification. In the first and sixth pandemic waves, TD notification preceded RENAVE by 12 and 7 days, respectively. Negative correlations between the two series were observed in the second and fourth waves, coinciding with a lower number of reported cases. In the third and fifth waves, TD notification also preceded RENAVE (lags -1, -5 and -14, -7, respectively). CONCLUSIONS: The results confirm the usefulness of TD registry as a complementary system to traditional epidemiological surveillance in Spain, by detecting COVID-19 cases in the 7, 10, and 14 days prior. A better positive correlation is observed in waves where more cases were reported.


Asunto(s)
COVID-19 , Pandemias , Sistema de Registros , Humanos , COVID-19/epidemiología , España/epidemiología , Estudios Longitudinales , SARS-CoV-2/aislamiento & purificación , Monitoreo Epidemiológico , Personas con Discapacidad/estadística & datos numéricos
8.
PLoS One ; 19(5): e0303102, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38718000

RESUMEN

BACKGROUND: Disability is an important multifaceted construct. A brief, generic self-reported disability questionnaire that promises a broader and more comparable measure of disability than disease-specific instruments does not currently exist. The aim of this study was to develop and evaluate such a questionnaire: the Universal Disability Index (UDI). METHODS: An online survey was used to collect general population data. Data were randomly divided into training and validation subsets. The dimensionality and structure of eight UDI questionnaire items were evaluated using exploratory factor analysis (EFA, training subset) followed by confirmatory factor analysis (CFA, validation subset). To assess concurrent validity, the UDI summed score from the full dataset was compared to the Groningen Activity Restriction Scale (GARS) and the Graded Chronic Pain Scale (GCPS) disability scores. Internal consistency and discriminant validity were also assessed. Bootstrapping was used to evaluate model stability and generalisability. RESULTS: 403 participants enrolled; 364 completed at least one UDI item. Three single-factor versions of the UDI were assessed (8-item, 7-item, and 6-item). All versions performed well during EFA and CFA (182 cases assigned to each), but none met the RMSEA (Root Mean Square Error of Approximation) criterion (≤ 0.08). All versions of the UDI had high internal consistency (Cronbach's α > 0.90), were strongly correlated (Pearson's r > 0.7) with both GARS and GCPS disability scores, indicating concurrent validity, and could accurately discriminate between upper and lower quartiles of these comparators. Confidence intervals of estimates were narrow, suggesting model stability and generalisability. CONCLUSIONS: A brief, generic self-reported disability questionnaire was found to be valid and to possess good psychometric properties. The UDI has a single factor structure and either a 6-item, 7-item or 8-item version can be used to measure disability. For brevity and parsimony, the 6-item UDI is recommended, but further testing of all versions is warranted.


Asunto(s)
Evaluación de la Discapacidad , Personas con Discapacidad , Autoinforme , Humanos , Masculino , Femenino , Persona de Mediana Edad , Adulto , Encuestas y Cuestionarios/normas , Análisis Factorial , Anciano , Psicometría/métodos , Reproducibilidad de los Resultados , Adulto Joven
9.
Immunol Cell Biol ; 102(5): 308-314, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38724046

RESUMEN

The May-June 2024 issue of Immunology & Cell Biology contains an Immunology Futures Special Feature on Disability Inclusion in Science. Diverse groups do better in science, yet individuals with disabilities face barriers to accessing education and opportunities within scientific disciplines. The Monash Sensory Science program, led by Professor Jamie Rossjohn and legally blind artist in residence Dr Erica Tandori, has transformed the accessibility for those with blindness, low vision and diverse needs (BLVDN) to experience biomedical data visualization through the form of multisensory scientific communication. The Monash Sensory Science Exhibition, first hosted in 2018 with the support of Monash University and the Australian Research Council, utilizes tactile multisensory and multimodal artworks, interactive displays and multisensory science books for BLVDN participants. In this Special Feature, scientists and researchers involved in the 2023 Autoimmunity Monash Sensory Science Exhibition discuss the novel models and displays designed to improve the scientific understanding of complex autoimmune diseases including rheumatoid arthritis, lupus, celiac disease, psoriasis and type 1 diabetes. This Special Feature aims to inform the inclusive teaching of immunology and raise discussions of how to improve access to all within our scientific institutions.


Asunto(s)
Ceguera , Humanos , Ceguera/terapia , Ceguera/inmunología , Baja Visión/terapia , Personas con Daño Visual , Ciencia , Personas con Discapacidad
10.
Rev Colomb Psiquiatr (Engl Ed) ; 53(1): 55-62, 2024.
Artículo en Inglés, Español | MEDLINE | ID: mdl-38724171

RESUMEN

BACKGROUND: Violence is an important public health problem and one of the main causes of deaths worldwide. The mental health consequences of surviving intimate partner violence (IPV) include depression, anxiety and post-traumatic stress disorder. Previous studies have identified that there is a relationship between depression and level of disability in female survivors of IPV. Estimating the direct, indirect or total effect of an exposure on an outcome makes it possible to identify mediating effects between a group of variables. Detecting mediation effects is useful for identifying casual pathways that generate a final outcome and provides a rationale for designing interventions to target the mediator, which in turn positively affects the outcome. The objective was to identify the mediating role of depressive symptoms on the relationship between IPV and disability. METHODS: This was a cross-sectional study of 94 women over the age of 18 who were survivors of IPV by men. They were recruited from two public hospitals in Cali and Tuluá in southwest Colombia. An analysis of casual relationships was performed using structural equation modelling that was made up of: four exogenous observed variables (age, current relationship status [in a relationship or single], level of schooling, and history of an impairment), intermediate endogenous variables (violence and depressive symptoms), and the main endogenous variable (disability). The analyses were carried out in Stata14.2. RESULTS: The direct effect of IPV severity on the level of disability was not statistically significant (ß=0.09; P=0.63). However, the indirect effect of IPV severity on disability mediated by depressive symptoms was (ß=0.39; P<0.01). The total effect of IPV severity on the level of disability was even greater (ß=0.48; P=0.01). CONCLUSIONS: This study found a complete mediating role of depressive symptoms on the relationship between the severity of IPV and the level of disability for the female participants in this study. The results of this research contribute to defining strategies to prevent and address intimate partner violence, depressive symptoms and disability in this population.


Asunto(s)
Depresión , Personas con Discapacidad , Violencia de Pareja , Sobrevivientes , Humanos , Femenino , Colombia/epidemiología , Estudios Transversales , Violencia de Pareja/psicología , Violencia de Pareja/estadística & datos numéricos , Adulto , Depresión/epidemiología , Sobrevivientes/psicología , Sobrevivientes/estadística & datos numéricos , Personas con Discapacidad/estadística & datos numéricos , Personas con Discapacidad/psicología , Adulto Joven , Persona de Mediana Edad , Exposición a la Violencia/psicología , Exposición a la Violencia/estadística & datos numéricos , Adolescente , Trastornos por Estrés Postraumático/epidemiología
12.
Cien Saude Colet ; 29(5): e01342023, 2024 May.
Artículo en Inglés | MEDLINE | ID: mdl-38747759

RESUMEN

Considering the institution of the Care Network for People with Disabilities (RCPD) in Brazil, this study analyzed the spatial distribution and the temporal trend of implementing specialized services that received financial support in the first eight years of this policy. We realized an ecological study based on the National Register of Health Facilities data from April/2012 to March/2020. A joinpoint regression was used for temporal trend analysis, and thematic maps were produced for spatial analysis of rehabilitation modalities and types of services. The most available services were physical and intellectual rehabilitation. The Southeast and Northeast regions had a higher concentration of specialized services. Despite the lower number of services, there was an average annual growth between 9.6% and 41.3%. This finding indicates an increase in specialized services for people with disabilities in the period analyzed, but care gaps are still being verified in the macro-regions of Brazil.


Asunto(s)
Personas con Discapacidad , Análisis Espacio-Temporal , Brasil , Humanos , Personas con Discapacidad/estadística & datos numéricos , Servicios de Salud para Personas con Discapacidad/organización & administración , Servicios de Salud para Personas con Discapacidad/estadística & datos numéricos , Atención a la Salud/organización & administración , Accesibilidad a los Servicios de Salud
13.
Front Public Health ; 12: 1383150, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38694970

RESUMEN

Over the past three decades, health equity has become a guiding framework for documenting, explaining, and informing the promotion of population health. With these developments, scholars have widened public health's aperture, bringing systems of oppression sharply into focus. Additionally, some researchers in disability and health have advocated for utilizing socially grounded frameworks to investigate the health of disabled people. Yet, naming ableism, much less operationalizing it for the empirical study of health, remains scant. This paper critically reviews the study of ableism as a social determinant of disabled people's health within population health research. First, we provide an orientation to the present state of this literature by looking to the past. We briefly trace a history of traditional approaches to studying disability and health and alternatives that have emerged from critiques of the individualized lens that has dominated this work. Next, we delineate the operation of ableism across social levels. We characterize how ableism has been studied in population health in terms of levels of analysis (intrapersonal, interpersonal, institutional, and structural) and measures of interest. To conclude, we discuss hinderances to and promising avenues toward population health research that advances health equity for disabled people.


Asunto(s)
Personas con Discapacidad , Salud Poblacional , Humanos , Determinantes Sociales de la Salud , Equidad en Salud , Capacitismo
14.
Artículo en Inglés | MEDLINE | ID: mdl-38722725

RESUMEN

Utilization of hand-tracking cameras, such as Leap, for hand rehabilitation and functional assessments is an innovative approach to providing affordable alternatives for people with disabilities. However, prior to deploying these commercially-available tools, a thorough evaluation of their performance for disabled populations is necessary. In this study, we provide an in-depth analysis of the accuracy of Leap's hand-tracking feature for both individuals with and without upper-body disabilities for common dynamic tasks used in rehabilitation. Leap is compared against motion capture with conventional techniques such as signal correlations, mean absolute errors, and digit segment length estimation. We also propose the use of dimensionality reduction techniques, such as Principal Component Analysis (PCA), to capture the complex, high-dimensional signal spaces of the hand. We found that Leap's hand-tracking performance did not differ between individuals with and without disabilities, yielding average signal correlations between 0.7-0.9. Both low and high mean absolute errors (between 10-80mm) were observed across participants. Overall, Leap did well with general hand posture tracking, with the largest errors associated with the tracking of the index finger. Leap's hand model was found to be most inaccurate in the proximal digit segment, underestimating digit lengths with errors as high as 18mm. Using PCA to quantify differences between the high-dimensional spaces of Leap and motion capture showed that high correlations between latent space projections were associated with high accuracy in the original signal space. These results point to the potential of low-dimensional representations of complex hand movements to support hand rehabilitation and assessment.


Asunto(s)
Mano , Análisis de Componente Principal , Grabación en Video , Humanos , Mano/fisiología , Masculino , Femenino , Adulto , Personas con Discapacidad/rehabilitación , Persona de Mediana Edad , Reproducibilidad de los Resultados , Adulto Joven , Algoritmos , Movimiento/fisiología
15.
Int J Equity Health ; 23(1): 98, 2024 May 13.
Artículo en Inglés | MEDLINE | ID: mdl-38741119

RESUMEN

INTRODUCTION: Almost one third of people affected by leprosy in Colombia suffer from disability, which often results from delayed diagnosis and treatment. We aimed to explore the experience of people affected by leprosy during the process of diagnosis and treatment and if and how this experience was influenced by peers. METHODS: A qualitative study using body map stories was conducted from October 2019 to February 2020 in Colombia. Adult people affected by leprosy were recruited through patient associations in different cities. We conducted three sessions with an average duration of 2-3 h per participant, during which the participants created a painted map of their body and chose symbols to represent their experience, while being engaged in an informal interview. The sessions were audio recorded, transcribed verbatim and analyzed thematically by an interdisciplinary team, consisting of physicians, social workers and a person affected by leprosy. RESULTS: The 17 study participants (11 female) were aged 20 to 70 years. Leprosy-related manifestations ranged from no to advanced disability. Some participants were active members of associations for people affected by leprosy. Three main themes were identified during analysis: (1) A long pathway to diagnosis, (2) Therapy as a double-edged sword and (3) The influence of other people affected by leprosy. The participants described an often years-long process until being diagnosed, which was marked by insecurities, repeated misdiagnosis, and worsening mental and physical health. Delayed diagnosis was related to late health care seeking, but also to inadequate health communication, lack of leprosy-related knowledge and negligence among health care workers. A high desire to cure motivated the participants to take their medication rigorously, despite the high treatment burden. Support from peers, either within the own social environment or provided from associations, contributed to a faster diagnosis and increased therapy adherence. Peers helped to recognize the symptoms, urged patients to seek care, recommended physicians with leprosy-related knowledge and provided a realistic example of both disease severity and curability. CONCLUSION: People affected by leprosy experience a significant burden during the process of diagnosis and treatment. Involving well-trained peers could foster early diagnosis, treatment compliance and prevention of disability.


Asunto(s)
Lepra , Investigación Cualitativa , Humanos , Lepra/psicología , Lepra/terapia , Lepra/diagnóstico , Colombia , Femenino , Masculino , Adulto , Persona de Mediana Edad , Anciano , Adulto Joven , Diagnóstico Tardío/psicología , Grupo Paritario , Personas con Discapacidad/psicología
16.
Cancer Med ; 13(9): e7102, 2024 May.
Artículo en Inglés | MEDLINE | ID: mdl-38711356

RESUMEN

INTRODUCTION: Oncogene testing is widely used to detect or direct cancer treatments. Compared to people without disabilities, people with disabilities in Korea have a lower cancer incidence rate but a fivefold higher cancer mortality rate, implying delayed detection. METHODS: We used an administrative database combining disability status and care utilization to analyze every case of cancer-related genetic testing paid for by the National Health Insurance Services of Korea between 2016 and 2019. We first compared percentages of individuals who had taken a registered genetic test by their disability statuses. We then compared the most frequently utilized tests between individuals with and without disabilities. RESULTS: Korean citizens, 175,000 in total, underwent at least one of the 192 registered cancer-related genetic tests between 2016 and 2019. People with disabilities utilized these genetic tests at higher rates than those without disabilities, regardless of sex or age. Among people aged ≥40 years, lung and colorectal cancer-related tests were most frequently utilized, regardless of disability status. CONCLUSION: Although the cancer-related genetic test uptake rate is higher among people with disabilities than among those without disabilities, it is still possible that information on these tests is not as readily available to people with disabilities. Therefore, it is imperative for the government to actively devise strategies to enhance national cancer screening rates among people with disabilities.


Asunto(s)
Personas con Discapacidad , Pruebas Genéticas , Neoplasias , Humanos , República de Corea/epidemiología , Masculino , Femenino , Pruebas Genéticas/estadística & datos numéricos , Persona de Mediana Edad , Neoplasias/genética , Neoplasias/epidemiología , Neoplasias/diagnóstico , Adulto , Personas con Discapacidad/estadística & datos numéricos , Anciano , Adulto Joven , Adolescente
18.
Int J Qual Stud Health Well-being ; 19(1): 2350081, 2024 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-38718279

RESUMEN

PURPOSE: This study comprehensively examines the disability acceptance experience of individuals who become disabled following accidents in the military after enlistment. METHODS: In-depth interviews and participative observation of two soldiers with disabilities are conducted. Data sources encompass the transcripts from these interviews, relevant news videos, and articles on the participants. A qualitative case study approach is applied to conduct both "within-case" and "cross-case" analyses. RESULTS: Although the two participants survived a crippling accidents, their military units did not actively attempt to resolve the accident. They grappled with despair and found it challenging to accept their new status as individuals with disability. Over time, they noticed changes in their personal relationships and started considering themselves burdens on their caregivers. However, despite encountering psychological challenges, which were marked by repeated setbacks and disappointments, the soldiers consistently made determined efforts to realize their objectives. Moreover, they strove to lead purposeful lives despite suffering the adversities caused by their disabilities. CONCLUSIONS: This study is the first in-depth examination of the disability acceptance experiences of soldiers with disability. The insights gleaned from our in-depth interviews will help formulate psychological and physical support systems for such individuals.


Asunto(s)
Personas con Discapacidad , Personal Militar , Investigación Cualitativa , Humanos , Personas con Discapacidad/psicología , Personal Militar/psicología , Masculino , Adulto , Adaptación Psicológica , Adulto Joven , Entrevistas como Asunto , Cuidadores/psicología
19.
Aging Clin Exp Res ; 36(1): 104, 2024 May 07.
Artículo en Inglés | MEDLINE | ID: mdl-38713318

RESUMEN

INTRODUCTION: Studies examining the effects of social participation on activities of daily living (ADL) disability are still scarce. AIM: To assess the reciprocal relationship between ADL disability trajectories and social participation among older Chinese people aged ≥ 60 years. METHODS: This study included 2976 participants aged ≥ 60 years in six waves of a community-based survey from 2015 to 2022. Basic activities of daily living (BADL) and instrumental activities of daily living (IADL) were used to assess the ADL disability in each survey. Social participation was assessed by involvement in four social activities and an extensive social participation score. Group-based trajectory modeling was used to identify potential heterogeneity in longitudinal changes over 7 years and explore associations between baseline predictors of group membership and these trajectories. RESULTS: Two BADL disability trajectories were identified: stable (94.8%) and increase (5.2%). Additionally, three IADL disability trajectories were distinguished: stable (73.2%), moderate (20.2%), and increase (6.6%). After controlling for the potential covariates, each point increase in the extensive social participation score correlated with a 17% decrease in the odds of older individuals belonging to the increase BADL trajectory group (OR = 0.83, 95% CI = 0.68-1.00). For IADL, it decreased the odds of being assigned to the moderate trajectory group by 16% (OR = 0.84, 95% CI = 0.75-0.95) and to the increase trajectory group by 23% (OR = 0.77, 95% CI = 0.64-0.93). CONCLUSIONS: Higher levels of social participation among older individuals were more likely to be classified as stable trajectories in both BADL and IADL. Increased participation in social activities by community-dwelling elderly adults may promote healthy aging.


Asunto(s)
Actividades Cotidianas , Personas con Discapacidad , Vida Independiente , Participación Social , Humanos , Anciano , Femenino , Masculino , Persona de Mediana Edad , Estudios Longitudinales , Anciano de 80 o más Años , Estudios de Cohortes , China
20.
Front Public Health ; 12: 1372463, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38774049

RESUMEN

There is a growing demand for quality healthcare for senior citizens among the disabled older population, considering their rising numbers. This study examines the longitudinal change in the health status of disabled older people and determines its effects on social exclusion and differences based on age at disability onset. The analysis was performed using a multilevel growth model on the health data for disabled older people (≥60 years) derived from the Korea Welfare Panel Study (KWePS). The following findings were observed based on the stated model: (1) The Self-Rated Health (SRH) of disabled older people increased over time, with significant individual differences in the initial status and growth rate; (2) The domains of economic and social network exclusion were associated with changes in the health status of disabled older people; and (3) The longitudinal effects of social exclusion on SRH changes in disabled older people varied according to the age at disability onset. Based on these results, strategies and implications for the development of health-promoting interventions for disabled older people were presented.


Asunto(s)
Personas con Discapacidad , Estado de Salud , Humanos , Estudios Longitudinales , Anciano , Personas con Discapacidad/estadística & datos numéricos , Masculino , Femenino , República de Corea , Persona de Mediana Edad , Anciano de 80 o más Años , Autoinforme
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