Experiences of the use of 3D printed hand ortoprosthesis (Cyborg Beast) in adolescents with congenital hand amputation and their main caregivers: A study of cases. / Experiencias del uso de ortoprótesis de mano impresa en 3D (Cyborg Beast) en adolescentes con amputación congénita de mano y sus cuidadores principales: Un estudio de casos.

OBJECTIVE: To describe the experience of using the 3D-printed prosthetic hand Cyborg Beast in ado lescents of Teletón Santiago with congenital hand amputation and their main caregivers who partici pated in a case study to evaluate the functionality of the prosthetic hand. CLINICAL CASE: Qualitative and descriptive research of case studies using semi-structured interviews with five adolescents with congenital hand amputation and their main caregivers. The information was transcribed and ana lyzed through open coding. Participants visualize the prosthesis as an opportunity for them by asso ciating it with normality. They also identify positive and negative characteristics, emphasizing in the latter. In addition, they described positive and negative effects produced when using the prosthesis, highlighting that the use of the prosthesis allows them to talk about their condition. Finally, im provement proposals for the prosthesis are presented, defining that the prototype must be corrected and change the age of the target population. CONCLUSIONS: The study is the first to investigate a little explored topic, allowing to provide information regarding the subjective experience of adolescents who use a prosthesis that currently has great media importance. The study participants reported dif ficulties in using the hand prosthesis, either due to materiality and design aspects. The prosthesis did not meet the expectations of use and esthetic.

Evaluación de programa de intervención psicosocial para cuidadoras de niños y jóvenes con discapacidad severa: ensayo clínico aleatorizado / Assessment of a psychosocial intervention on caregivers of children and teenagers with severe disabilities: a randomized clinical trial

INTRODUCCIÓN: El cuidado de un familiar dependiente implica un alto riesgo para el cuidador quien se ve propenso a padecer diversas alteraciones. Institutos Teletón a partir del año 2017 implementó el programa Cuidar Cuidándote, que trabaja con cuidadoras de personas dependientes, a través de un acompañamiento domiciliario en actividades de promoción del autocuidado, actividades de respiro y vinculación con la comunidad. OBJETIVO: Evaluar la efectividad del programa "Cuidar Cuidándote" del voluntariado Teletón, en la calidad de vida, sobrecarga y apoyo social de las cuidadoras de niños, niñas y jóvenes en situación de discapacidad con compromiso funcional severo, durante los años 2017 y 2018. METODOLOGÍA: Estudio experimental aleatorizado simple ciego de evaluación de intervención psicosocial en 25 cuidadoras de niños, niñas y adolescentes con discapacidad severa del Instituto Teletón Santiago. Se trabajó en dos grupos, el grupo experimental participó del programa Cuidar Cuidándote recibiendo 13 visitas domiciliarias, y el grupo control no participó del programa, quedando en lista de espera. Para la evaluación de la intervención se realizaron pruebas de calidad de vida, sobrecarga del cuidador y apoyo social percibido antes y después de la intervención. RESULTADOS: Se observó una disminución estadísticamente significativa (promedio de 11,6 puntos en escala de Zarit) en la sobrecarga en cuidadoras de grupo de intervención. No se encontraron diferencias estadísticamente significativas para apoyo social y calidad de vida. CONCLUSIÓN: El programa "Cuidar Cuidándote" logra disminuir el nivel de sobrecarga de las cuidadoras de niños, niñas y adolescentes con discapacidad severa.

INTRODUCTION: Caring for a dependent family member carries a high risk for the caregiver, who is prone to experiencing diverse disorders. In 2017, Teleton introduced the program "Cuidar Cuidándote", which offers in-home services for caregivers assisting dependent family members, providing support in activities to promote self-care, community involvement and respite care. OBJECTIVE: to do an assessment of the effectiveness of "Cuidar Cuidándote" program of Teleton's volunteer team, in terms of quality of life, work overload and social support for caregivers of children and young people with disabilities and severe functional impairment during 2017 and 2018. METHOD: A single-blind randomized experimental study to assess the psychosocial intervention in 25 caregivers of children and teenagers with severe disabilities, users of Instituto Teletón-Santiago. Caregivers were separated in two groups: an experimental group that participated in the "Cuidar Cuidándote" program including 13 home visits, and a control group that received no home visits. the effectiveness of the intervention was measured through different tests, such as quality of life, work overload, and social support as perceived before and after the intervention. RESULTS: A statistically significant reduction in caregiver work overload (average of 11.6 points on the Zarit Scale) was observed in the group of caregivers that received the home visits. No significant differences were observed in terms of social support and quality of life. CONCLUSION: This program achieves a reduction in the level of work overload for caregivers of children and teenagers with severe disabilities.

Experiencias del uso de ortoprótesis de mano impresa en 3D (Cyborg Beast) en adolescentes con amputación congénita de mano y sus cuidadores principales: un estudio de casos / Experiences of the use of 3D printed hand ortoprosthesis (Cyborg Beast) in adolescents with congenital hand amputation and their main caregivers: a study of cases

OBJETIVO: Describir la experiencia del uso de la ortoprótesis de mano impresa en 3D Cyborg Beast, en adolescentes usuarios de Teletón Santiago con amputación congénita de mano y sus cuidadores principales, que participaron en un estudio de casos para evaluar la funcionalidad de la mano proté sica. CASO CLÍNICO: Investigación de estudio de casos de tipo descriptivo, mediante entrevistas semi- estructuradas a cinco adolescentes con amputación congénita de mano y a sus cuidadores principales, las cuales fueron transcritas y analizadas mediante codificación abierta. Los participantes visualizan la ortoprótesis como una oportunidad para ellos asociándola a la normalidad. Asimismo, identificaron características positivas y negativas, enfatizando en estas últimas. Además, describieron efectos positivos y negativos producidos al utilizar la prótesis, destacando que el uso de la prótesis les permite ha blar sobre su condición. Finalmente, se presentan propuestas de mejora para la prótesis, definiéndose que se debe corregir el prototipo y cambiar la edad de la población objetivo. CONCLUSIONES: El estudio se configura como pionero al investigar un tema poco explorado, permitiendo entregar información respecto de la experiencia subjetiva de adolescentes que utilizan una ortoprótesis que actualmente tiene gran importancia mediática. Los participantes del estudio relataron dificultades para usar la ortoprótesis de mano, ya sea por aspectos de materialidad y diseño. La ortoprótesis no cumplió las expectativas de uso y estética.

OBJECTIVE: To describe the experience of using the 3D-printed prosthetic hand Cyborg Beast in ado lescents of Teletón Santiago with congenital hand amputation and their main caregivers who partici pated in a case study to evaluate the functionality of the prosthetic hand. CLINICAL CASE: Qualitative and descriptive research of case studies using semi-structured interviews with five adolescents with congenital hand amputation and their main caregivers. The information was transcribed and ana lyzed through open coding. Participants visualize the prosthesis as an opportunity for them by asso ciating it with normality. They also identify positive and negative characteristics, emphasizing in the latter. In addition, they described positive and negative effects produced when using the prosthesis, highlighting that the use of the prosthesis allows them to talk about their condition. Finally, im provement proposals for the prosthesis are presented, defining that the prototype must be corrected and change the age of the target population. CONCLUSIONS: The study is the first to investigate a little explored topic, allowing to provide information regarding the subjective experience of adolescents who use a prosthesis that currently has great media importance. The study participants reported dif ficulties in using the hand prosthesis, either due to materiality and design aspects. The prosthesis did not meet the expectations of use and esthetic.

Medición de la participación en niños y adolescentes con y sin discapacidad: una revisión sistemática / Measuring participation in children and adolescents with and without disabilities: a systematic review

Resumen Introducción: De acuerdo a la Clasificación Internacional del Funcionamiento de la Discapacidad y la Salud (CIF), la participación se define como "el involucramiento del sujeto en situaciones de la vida" y es un aspecto fundamental en el desarrollo de los niños, niñas y adolescentes. En el caso de niños(as) con discapacidad, permite una mejor comprensión del posible impacto de las deficiencias en la vida cotidiana. Objetivo: Evaluar las escalas de medición de la participación en niños, niñas y adolescentes con y sin discapacidad. Método: Revisión sistemática. Se incluyeron estudios de va lidación de instrumentos de evaluación de la participación en niños(as) y adolescentes con y sin discapacidad sin restricción de lenguaje. La búsqueda se realizó en Pubmed, EMBASE, CINAHL, The Cochrane Library, Biblioteca Virtual de la Salud, Opengrey y Google Scholar. Los datos fueron ex traídos y analizados en Microsoft Excel. Registro de protocolo PROSPERO 2015:CRD42015020644. Resultados: De los 1.689 artículos que arrojó la búsqueda electrónica, se identificaron 9 escalas de evaluación de la participación de niños(as) y/o adolescentes con y sin discapacidad. Diversidad en las dimensiones, extensión y aplicación (padres y niños(as)). El número de pacientes incorporados en las validaciones originales es variable, al igual que el porcentaje de niños y/o adolescentes con discapaci dad incluidos en los estudios de validación. Conclusiones: Existe gran variabilidad en las propiedades psicométricas y características de las escalas incluidas en esta revisión, principalmente debido a que el constructo de participación difiere de acuerdo a la cultura, por lo que las escalas seleccionadas re quieren de adaptaciones transculturales para su uso.

Abstract Introduction: According to the International Classification of Functioning, Disability and Health (ICF), participation is defined as "the involvement of the subject in situations of life" and is fun damental in the development of children and adolescents. In case of children with disabilities, participation allows a better understanding of the possible impact of deficiencies in daily life. Objective: To evaluate measurement scales of participation in children and adolescents with and without disabilities. Method: Systematic review. Validation studies of measurement scales of parti cipation in children and adolescents with and without disabilities without language restriction were included. The search was performed in Pubmed, EMBASE, CINAHL, The Cochrane Library, Health Virtual Library, Opengrey and Google Scholar. The data were extracted and analyzed in Microsoft Excel. Protocol Register PROSPERO 2015: CRD42015020644. Results: 1689 articles were collected through electronic search, 9 scales were selected for analysis. Diversity in size and application bet ween the scales selected was found. The number of patients included in the original validations was variable, as the percentage of children and/or adolescents with disabilities included in the validation studies. Conclusions: There is great variability in the psychometric properties and characteristics of the scales included in this review, mainly for which the participation construct differs according to culture, so the selected scales require transcultural adaptations for their use.

[Measuring participation in children and adolescents with and without disabilities: a systematic review]. / Medición de la participación en niños y adolescentes con y sin discapacidad: una revisión sistemática.

INTRODUCTION: According to the International Classification of Functioning, Disability and Health (ICF), participation is defined as "the involvement of the subject in situations of life" and is fun damental in the development of children and adolescents. In case of children with disabilities, participation allows a better understanding of the possible impact of deficiencies in daily life. OBJECTIVE: To evaluate measurement scales of participation in children and adolescents with and without disabilities. METHOD: Systematic review. Validation studies of measurement scales of parti cipation in children and adolescents with and without disabilities without language restriction were included. The search was performed in Pubmed, EMBASE, CINAHL, The Cochrane Library, Health Virtual Library, Opengrey and Google Scholar. The data were extracted and analyzed in Microsoft Excel. Protocol Register PROSPERO 2015: CRD42015020644. RESULTS: 1689 articles were collected through electronic search, 9 scales were selected for analysis. Diversity in size and application bet ween the scales selected was found. The number of patients included in the original validations was variable, as the percentage of children and/or adolescents with disabilities included in the validation studies. CONCLUSIONS: There is great variability in the psychometric properties and characteristics of the scales included in this review, mainly for which the participation construct differs according to culture, so the selected scales require transcultural adaptations for their use.