Quality of life as assessed by adults with cerebral palsy.

AIM: We explored the quality of life of adults with cerebral palsy without an intellectual disability and the predictors of quality of life. BACKGROUND: Because cerebral palsy is a disease that manifests in childhood, much of the research into quality of life for those dealing with it focuses on children; there are few studies that evaluate the quality of life of adults with cerebral palsy. Therefore, it is important to consider their perceptions in order to improve their general wellbeing and self-determination. DESIGN: This was a descriptive, cross-sectional study. METHOD: Quality of life was measured using the GENCAT Quality of Life Scale. Demographic and personal variables were also collected and examined. Participants comprised 75 adults (58.7 percent men, mean age = 40.84 years) with cerebral palsy who were members of the National Cerebral Palsy Association of Spain between 2014 and 2015. A linear multivariate model was examined as well. RESULTS: The overall mean score indicator of participants' quality of life was 103.29, which corresponds to the 56.6th percentile on the GENCAT scale. Examining the level of qualification, we found significant differences in the factors "personal development" and "self-determination," and those with a university education obtained higher scores than their less-educated counterparts. Having a partner was related to higher quality of life standard scores. After constructing a linear model, it was observed that maintaining sexual relationships was another factor that increased participants' quality of life. CONCLUSION: This study highlights the importance of social and romantic relationships to achieve a better quality of life in adults with cerebral palsy who do not have an intellectual disability. Social integration and sexuality education programs should be developed to improve their quality of life.

Acercamiento a la realidad de las familias depersonas con autismo / Approaching the children’ families with autism

Es un hecho universalmente aceptado que la presencia en las familias de un hijo conalgún tipo de minusvalía física o psíquica grave constituye un factor potencial que perturbala dinámica familiar. Esto es porque la convivencia con una persona con este tipo deproblemas puede provocar cambios importantes en la vida personal de los distintos miembros-fundamentalmente los padres- y de las relaciones entre ellos.Los datos muestran de manera indiscutible que muchas familias con hijos con autismopresentan niveles de estrés crónico, significativamente superiores a los que presentan lasfamilias con hijos con otras discapacidades. Esta diferenciación en cuanto al efecto causadopor el autismo en la familia, se inicia muchas veces a causa de las incertidumbres queplantea la evolución disarmónica de los niños y niñas con autismo, se mantiene posteriormenteante la ausencia de un diagnóstico y pronóstico claros y aumenta considerablementecomo consecuencia de los múltiples efectos negativos en el ámbito familiar. La convivenciaen el hogar de un niño o niña con autismo suele ser muy compleja y las familias se vensometidas desde el principio a modificaciones severas de su régimen de vida habitual conlimitaciones desmedidas de su independencia (AU)

It is a universally accepted fact that the presence in the families of a child with sometype of physical or psychic serious handicap constitutes a potential factor that disturbs thefamiliar dynamics. This is because the cohabitation with a person with this type of problemscan provoke important changes in the personal life of the different members - fundamentallythe parents - and of the relations between them.The information shows that many children families of with autism present levels ofstress, significantly higher to whom present the families with children with other disabilities.This differentiation on the effect caused by autism in the family begins often due tothe uncertainties on the not harmonic evolution of the children with autism, and is keptlater by the absence of a diagnosis and increases considerably as consequence of the multiplenegative effects in the familiar area. The coexistence at home with a child with autismis in the habit of being very complex and families are submitted from the beginning tosevere modifications of their habitual life with excessive limitations of their independence (AU)