The Prevalence of Spiritual and Social Support Needs and Their Association With Postintensive Care Syndrome Symptoms Among Critical Illness Survivors Seen in a Post-ICU Follow-Up Clinic.

OBJECTIVES: Spiritual and social support may be key facilitators for critical illness recovery and are identified as high priority for research. Understanding the prevalence of spiritual and social support needs in critical illness survivors may guide development of targeted interventions for support, which, in turn, may improve critical illness survivor quality of life. To characterize unmet spiritual and social support needs in critical illness survivors approximately 1 month after hospital discharge and examine the association of these needs with postintensive care syndrome (PICS)-related symptom burden. DESIGN: Retrospective, cross-sectional study. SETTING: University-affiliated hospital in Pittsburgh, PA. PATIENTS: One hundred ninety-six consecutive adult critical illness survivors seen during an initial post-ICU clinic visit from June 2018 to March 2020. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Patient-reported clinical outcome measures assessing spiritual and social support needs and PICS-related symptoms were extracted from the electronic health record. Patients had a median age of 61 (interquartile range [IQR], 51-68.5), and majority were male (55.1%) with a moderate comorbidity burden (Charlson comorbidity index median score, 3; IQR, 2-5). Social support and spiritual needs were prevalent. Of the 196 patients, over 50% reported unpreparedness/fearful for the future, half of patients reported not feeling in control of their care, and over one-third reported needing more support than their family, friends, or insurance can provide. Nearly 13% of respondents reported feeling abandoned or punished by God/not supported by their church/faith. Many patients reported overlapping PICS-related symptom domains (physical, psychologic, and cognitive). Univariate and multivariate analyses revealed associations between reported PICS-related symptoms and the presence of spiritual and social needs. CONCLUSIONS: Patients surviving critical illness experience significant social support and spiritual needs independent of commonly identified manifestations of PICS. These findings support the need for formal assessment and tailored interventions for social support and spiritual needs in critical illness survivors.

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.

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.

Does Quality of Life Differ for Children With Autism Spectrum Disorder and Intellectual Disability Compared to Peers Without Autism?

The main goal was to test if children with intellectual disability (ID) and autism spectrum disorder (ASD) show lower quality of life (QOL) in comparison to those with only ID. The KidsLife Scale was applied to 1060 children with ID, 25% of whom also had ASD, aged 4-21 years old. Those with ASD showed lower scores in several QOL domains but, when the effect of other variables was controlled, lower scores were only kept for interpersonal relationships, social inclusion, and physical wellbeing. Slightly higher scores were found for material wellbeing. ASD, Level of ID and support needs were the covariables with the greatest influence in most domains, while gender was only significant for social inclusion (girls scored lower than boys).

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.