RESUMEN
OBJECTIVE: To understand the life story of university students and the adjustment of living with motor deficiency. METHOD: A qualitative research, developed with eight university students with motor deficiency. Data collect was performed between October 2016 and March 2017. Thematic data analysis was used. RESULTS: Two categories emerged: family as safe harbor and extra-family relationships: weaknesses and strengths. Family and friends were fundamental for facing disability, standing out for their support and affection. Friends have been encouraged to overcome the limitations and difficulties. Extra-family life was exposed to prejudice that resulted in fears and traumas. CONCLUSION: The impact of motor deficiency on daily life is the result of life experiences. Healthy family relationships, along with strong bonds of friendship, made the difficulties found in the daily life of these students smoother.
Asunto(s)
Relaciones Familiares , Amigos , Trastornos Motores/psicología , Prejuicio , Estudiantes/psicología , Actividades Cotidianas , Adolescente , Adulto , Brasil , Miedo , Femenino , Humanos , Entrevistas como Asunto/métodos , Masculino , Investigación Cualitativa , Apoyo Social , Universidades , Adulto JovenRESUMEN
OBJECTIVE: Amyotrophic lateral sclerosis type 8 (ALS8) is a familial form of motor neuron disease, with predominance of lower motor neuron degeneration, and is caused by mutation of the vesicle-associated membrane protein-associated protein B (VAPB). We aimed to compare the cognitive profile of patients with ALS8 and healthy controls (HC), and to screen for behavioural features in ALS8 patients. METHODS: The sample was composed of ALS8 patients (n = 22; 14 men; median age 48 years old; median disease duration 6.5 years) and HC (n = 33; 19 men; median age 48 years old). Patients and HC were matched for sex, age and educational level. Participants underwent behavioural, psychiatric (Hospital Anxiety and Depression Scale and Cambridge Behavioural Inventory-Revised) and neuropsychological assessments, focused on executive functions, visual memory, and facial emotion recognition. RESULTS: ALS8 patients exhibited subtle deficits in executive functions. Compared to controls, ALS8 patients were significantly impaired in measures of flexibility and inhibitory control. ALS8 patients and HC did not differ in scores of facial emotion recognition. There was clinically relevant anxiety and depression in 36% and 27% of ALS8 patients, respectively. Behavioural disorders such as stereotypic and motor behaviours were present in more than 30% of patients. CONCLUSIONS: ALS8 patients present mild executive dysfunction and behavioural changes such as mood disorders, apathy and stereotypic behaviour. Our findings suggest that ALS8 is not a pure motor disorder and it is associated with subtle cognitive and behavioural impairments.
Asunto(s)
Esclerosis Amiotrófica Lateral/epidemiología , Esclerosis Amiotrófica Lateral/psicología , Trastornos Mentales/epidemiología , Trastornos Mentales/psicología , Trastornos Motores/epidemiología , Trastornos Motores/psicología , Adulto , Esclerosis Amiotrófica Lateral/diagnóstico , Estudios Transversales , Femenino , Humanos , Masculino , Trastornos Mentales/diagnóstico , Persona de Mediana Edad , Trastornos Motores/diagnóstico , Pruebas NeuropsicológicasRESUMEN
Abstract Objective: To understand the life story of university students and the adjustment of living with motor deficiency. Method: A qualitative research, developed with eight university students with motor deficiency. Data collect was performed between October 2016 and March 2017. Thematic data analysis was used. Results: Two categories emerged: family as safe harbor and extra-family relationships: weaknesses and strengths. Family and friends were fundamental for facing disability, standing out for their support and affection. Friends have been encouraged to overcome the limitations and difficulties. Extra-family life was exposed to prejudice that resulted in fears and traumas. Conclusion: The impact of motor deficiency on daily life is the result of life experiences. Healthy family relationships, along with strong bonds of friendship, made the difficulties found in the daily life of these students smoother.
Resumen Objetivo: Comprender la historia de vida de los estudiantes universitarios y la convivencia con la discapacidad motriz. Método: Investigación de enfoque cualitativo, desarrollada con ocho estudiantes universitarios con discapacidad motriz. Recolección de datos realizada entre octubre de 2016 y marzo de 2017. Se utilizó el análisis temático de los datos. Resultados: Emergieron dos categorías: familia como puerto seguro y relaciones extrafamiliares: debilidades y fortalezas. La familia y los amigos fueron fundamentales para enfrentar la discapacidad, destacándose por el apoyo y el afecto. Los amigos se presentan como alentadores para superar las limitaciones y dificultades. La vida extrafamiliar fue expuesta a preconceptos que resultan en miedos y traumas. Conclusión: El impacto de la discapacidad motriz en el cotidiano es el resultado de las experiencias de vida. Las convivencias familiares sanas, junto a lazos fuertes de amistad, hacen que las dificultades encontradas en el cotidiano de estos estudiantes sean amenizadas.
Resumo Objetivo: Compreender a história de vida de estudantes universitários e a convivência com a deficiência motora. Método: Pesquisa de abordagem qualitativa, desenvolvida com oito estudantes universitários com deficiência motora. Coleta de dados realizada entre outubro de 2016 e março de 2017. Foi utilizada a análise temática dos dados. Resultados: Emergiram duas categorias: família como porto seguro e relacionamentos extrafamiliares: fraquezas e fortalezas. A família e os amigos foram fundamentais para o enfrentamento da deficiência, destacando-se pelo apoio e afeto. Os amigos apresentaram-se encorajadores para superar as limitações e dificuldades. A vida extrafamiliar foi exposta a preconceitos que resultaram em medos e traumas. Conclusão: O impacto da deficiência motora no cotidiano é resultante das experiências de vida. As convivências familiares saudáveis, junto com laços fortes de amizade, fizeram com que as dificuldades encontradas no cotidiano desses estudantes fossem amenizadas.