Current Situation Analysis of Care Support Needs in Children with Disabilities: from a Comprehensive Rehabilitation Perspective / 中国康复理论与实践

Objective:To investigate the care needs and influencing factors for caregivers of children with disabilities. Methods:From December, 2019 to January, 2020, and August to September, 2020, a total of 496 family caregivers of children with disabilities were surveyed in Shanghai. The Care Needs Assessment Tool for Children with Disabilities was used to measure the care needs rates and satisfaction, and multiple linear regression was performed to analyze the related factors. Results:The rate of total need was 71.8%, which was high in the information support (83.7%), spiritual support (75.9%) and financial support (74.1%), and was at an intermediate level in alternative service support (62.9%) and professional support (62.2%). The satisfaction of total need was 39.4%, which was at a intermediate level in the spiritual support (50.8%) and professional support (45.5%), and was at a low level in alternative service support (32.8%), financial support (32.3%) and information support (30.3%). The caregivers needed less support for thoses with higher public policy satisfaction (B = -3.252, 95%CI -5.370 to -1.134, P = 0.003) and the children with vision and speech disability, and undetermined disability (Bvision disability= -12.160, 95%CI -21.976 to -2.344, P = 0.015; Bspeech disability= -12.754, 95%CI -22.583 to -2.925, P = 0.011; Bundetermined disability= -16.553, 95%CI -24.714 to -8.392, P < 0.001), while mothers (B = 9.071, 95%CI 4.293 to 13.848, P < 0.001) needed more support than grandparents. The caregivers with higher public policy satisfaction (B = 7.392, 95%CI 5.523 to 9.262, P < 0.001), the children with vision disability, hearing disability and speech disability (Bvision disability= 8.612, 95%CI 0.081 to 17.144, P = 0.048; Bhearing disability= 8.686, 95%CI 1.920 to 15.451, P=0.012; Bspeech disability= 9.515, 95%CI 1.184 to 17.846, P = 0.025), lower barriers to social inclusion (B = 1.932, 95%CI 0.457 to 3.408, P = 0.010) and shorter average daily care hours (B = -4.123, 95%CI -6.247 to -1.999, P < 0.001) were more satisfactory for support. Conclusion:The care needs of children with disabilities are diverse, with the highest rate of need for information support and the lowest level of satisfaction. There is some variation in the care needs of children with different types of disabilities, family roles, average daily care hours and social environment characteristics.

Dependencia, cuidados y apoyos: términos complementarios aplicados a un caso con enfermedad vascular cerebral / Dependency, care and supports complementary terms applied to a case on cerebrovascular disease

Introducción: el incremento de la esperanza de vida, la mayor supervivencia de las personas con discapacidad y el crecimiento de las enfermedades crónicas elevan las cifras de personas en situación de dependencia. Esta transformación ha incrementado las necesidades de apoyo que van más allá de los servicios o programas formales y que requieren la incorporación de nuevas herramientas que permitan identificarlas. Desarrollo: se trata de la valoración de una persona en situación de dependencia a causa de una enfermedad vascular cerebral (EVC) con uso de la Escala de Intensidad de Apoyos (SIS). Los resultados muestran la pertinencia de incorporar al enfoque del cuidado de la enfermería un marco de evaluación que facilite la determinación de la frecuencia, tiempo y tipo de apoyo necesarios para el desarrollo de las actividades cotidianas, de tal modo que sea posible planificar de manera individualizada los apoyos requeridos para mejorar, mantener o recuperar la salud. Conclusiones: el modelo de intensidad de apoyos resultó de gran ayuda para evaluar la diferencia entre las capacidades/habilidades de la persona y los requerimientos/demandas que necesita para funcionar en su entorno; asimismo, permitió planificar el entorno y las adecuaciones ambientales, la cantidad de personas necesarias para el cuidado y el grado de capacitación para suministrar el cuidado previsto.

Introduction: The increase in life expectancy, the greater survival rate of people with disabilities and the growth of chronic diseases raise the numbers of people in situations of dependency. This transformation has increased support needs that go beyond formal services or programs and that require the incorporation of new tools to identify them. Development: This is the assessment of a person in a situation of dependency due to a cerebrovascular disease (EVC) using the Support Intensity Scale (SIS).The results show the pertinence of incorporating into the Nursing Care approach, an evaluation framework that facilitates the estimation of the frequency, time and type of support required for the development of daily activities, thus allowing the intensity to be individually planned of the supports required to improve, maintain or regain health. Conclusions: The support intensity model was of great help to evaluate the difference between the capacities / abilities of the person and the requirements / demands that he needs to function in his environment, as well as allowed to plan the environment and the environmental adaptations, the quantity of people required for care and the level of training needed to provide the intended care.

Quality of Life and its associated factors among caregivers of patients with dementia – A crosssectional study in Kuching, Sarawak, Malaysia

@#Background: This study aimed to determine the quality of life and its associated factors among caregivers of patients with dementia in Kuching, Sarawak, Malaysia. Methods: This cross-sectional study was carried out among caregivers for dementia patients who visited three main hospitals in Kuching, Sarawak. Using a validated questionnaire, data was obtained based on socio-demographic profile, patient and caregiving characteristics, supports needs by caregivers, and quality of life (QoL) of caregivers modified from Zarit Burden Interview (ZBI), Hospital Anxiety and Depression Scale (HADS) and Evaluation’s Scale of the Caregiver’s QoL. Results: A total of 217 caregivers participated with response rate of 99.6%, with 67.3% female and 63.1% Chinese. Most respondent provide care for their parents (62.7%), and stay with patients (67.3%). Average duration of care was 4.2 years (SD±3.72). Resource referral (M=3.52, SD±1.334) and education support (M=3.67, SD±1.054) was highest need. Majority respondents experienced little to no burden (59%). Most respondents were not depressed (98.1%). The QoL of respondents was satisfactory (M=41.36, SD±25.840). Gender of caregivers, patients with behavioural and psychological symptoms of dementia, duration of caregiving, respite care need, caregiver disability or illness, belonging support need, education support need were significantly associated with QoL of caregivers (p<0.05). Conclusion: This study on QoL of caregivers of dementia patients in Sarawak, Malaysia shows that it can be influenced by many factors, both at the caregivers’ level as well as the patients themselves. Therefore, intervention should aim at patients and their caregivers, and within community and healthcare settings.

Evaluación de necesidades de apoyo en universitarios con diversidad funcional de origen físico: un estudio de caso / Assessment of support needs in university students with Functional diversity of physical origin: a case study

Objetivo. Este estudio evaluó las necesidades de apoyo de estudiantes universitarios con diversidad funcional de origen físico en una Institución Educativa Superior. Se analizó, además, la percepción del docente y, en su conjunto, la correspondencia con las políticas de inclusión, tanto institucionales como de la nación. Método. Bajo el estudio de caso, se trabajó el enfoque cualitativo, con un diseño de teoría crítica. Se usó la entrevista en profundidad, el grupo focal y el análisis documental para la triangulación de la información. La muestra fue de casos-tipo y se definió por saturación de categorías. Se recurrió al criterio deductivoinductivo para el análisis de la información con el apoyo del software Atlas.ti. Resultados. Los participantes manifestaron presencia de barreras arquitectónicas, poca participación social en los diferentes escenarios que se organizan y necesidades de apoyo de tipo psicológico. Asimismo, deseos de formarse como profesionales. Conclusiones. Se reconoce la importancia que tiene para las instituciones de educación superior ser inclusivas para favorecer la mitigación de las necesidades que se presentan.

Objective: this study evaluated the support needs of university students with functional diversity of physical origin in a Higher Educational Institution. In addition, the perception teachers, and as a whole, the correspondence with inclusion policies, both institutional and national, were analyzed. Method: under the case study, the qualitative approach was worked out, with a critical theory design. The in-depth interview, the focus group, and the documentary analysis were used for the triangulation of the information. The sample was case-type and defined by saturation of categories. The deductive-inductive criterion was used to analyze the information with the support of the Atlas.ti software. Results: the participants manifested the presence of architectural barriers, little social participation in the different scenarios that are organized, and psychological support needs. Conclusions: the importance of higher education institutions to be inclusive to mitigate the needs is recognized.

Individualized Services and Support Plan for People with Intellectual Disability Based on ICF / 中国康复理论与实践

Objective To analyze the unmet needs of services and support, and design structured, standardrized and individualized service and support plans for people with intellectual disability using ICF framework.Methods In respective of intellectual function and adaptive behavior, a structured, standardrized and individualized service and support plan had been constructed according to process of individualized plan using ICF.Results Based on ICF model of functioning and disability, the structured and standardized service and support plan had been constructed, including functional diagnosis and service needs reporting, and individualized services protocols.Conclusion With the analysis of functioning and reporting of unmet needs of service using ICF, the structured, standardrised and individualized service and support plan can be developed to promote the total rehabilitation for people with intellectual disabilities.

Necesidades de apoyos en adultos con discapacidad intelectual institucionalizados: estudio en el contexto chileno / Supports Needs for Institutionalized Adults with Intellectual Disability

El presente estudio analiza las necesidades de apoyos de una muestra de 285 adultos con discapacidad intelectual institucionalizados. El instrumento empleado ha sido la Escala de Intensidad de Apoyos, SIS (Verdugo, Arias & Ibañez, 2007). Los resultados revelaron la existencia de bajas necesidades de apoyos en cuanto al perfil general de la muestra, si las mayores necesidades están en las dimensiones de Aprendizaje a lo largo de la vida y la dimensión con menores necesidades de apoyos es Actividades de la vida en el hogar. Los años institucionalizados o la edad no se encontraron asociados con el nivel de las necesidades de apoyos, pero sí la severidad de la discapacidad y el género. Estos resultados avalan la validez transcultural de la SIS y su utilidad para planificar servicios orientados a mejorar la vida de la población institucionalizada con discapacidad intelectual.

This study examines the support needs of a sample of 285 institutionalized adults with intellectual disabilities. The instrument used was the Supports Intensity Scale SIS. The results revealed the existence of low support needs, with more elevated needs in lifelong learning activities and less in home living domains. Years institutionalized and age were not associated with the level of support needs, but the severity of the disability and the gender were. These results support the cross-cultural validity of the SIS and its usefulness for planning services oriented to improving the lives of institutionalized population with intellectual disabilities.