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    Qualidade de vida de cuidadores de indivíduos em um primeiro episódio psicótico
    (Universidade Federal de São Paulo (UNIFESP), 2016-11-28) Jorge, Rita de Cassia Ferreira de Araujo [UNIFESP]; Chaves, Ana Cristina Chaves [UNIFESP]; Universidade Federal de São Paulo (UNIFESP)
    The first psychotic episode psychosis is a critical period of great suffering for the affected individuals and their caregivers. With the community-based treatment implementation worldwide, families have been the primary caregivers, taking responsibility for addressing the needs the care recipient. Quality of life among these caregivers is low in various countries and different socio-cultural systems. Quality of life is related to a person?s perceptions of their position in life, within their own cultural context, system of values, goals, expectations, standards and concerns. Understanding the impact of caring for patients with first episode psychosis means recognizing that the caregiver needs care. Such a view will be instrumental in developing future personalized interventions that will benefit the actors of this care. To our knowledge, the present is the first Brazilian study on quality of life of caregivers of individuals experiencing a first psychotic episode. Objectives: (1) Brazilian Portuguese translation and validation of the Experience Caregiving Inventory; and (2) Evaluation of the Quality of Life predictors of primary caregivers of individuals with first episodic psychosis. Two papers have been developed for the preparation of this thesis. Methods: Longitudinal study with eighty individuals experiencing first episodic psychosis and their primary caregivers, consecutively recruited from the First Episodic Psychosis Outpatient Service of the Federal University of São Paulo / UNIFESP, and followed over a year. These caregivers were directly involved in the management of patients, not paid to provide care, over eighteen years of age, and submitted to sociodemographic and economic surveys, Short-Form 36, Self-Report Questionnaire-20 and Experience of Caring Inventory at time zero and 1 year. To meet the first objective, the process of translation / adaptation of the scale followed the recommendations for semantic, idiomatic, experimental and conceptual equivalences by using backtranslation, review committee, evaluation by a committee of judges, pre-testing techniques and review of weight / value of the scores. Regarding the second objective of this study, we tested the impact of the Self-Report Questionnaire-20 and the Experience of Caring Inventory on caregiver quality of life. The first step was to determine how the variables interrelated through a bivariate correlation (sum of "Yes" of the Self Report Questionnaire-20, Experience of caring Inventory, and positive and negative scores and domains of the Short Form-36). Spearman correlation was used for non-normal distributions between variables, or Pearson's correlation when the variables showed normal distribution. The Kolmogorov-Smirnov test was used to verify the normality of distribution. Next, we extracted a single quality of life variable through principal component analysis, a statistical technique used to reduce data, thereby decreasing the complexity of the interrelations between the 8 domains of the Short Form-36 to a relatively small number of combinations. The resulting component, called "Essential Quality of Life " was used as a result of linear regression models: one with non-adjusted covariates (each covariate individually calculated) and the other with the adjusted covariate (regression of all predictors together to the extracted component of quality of life as a result). Results: (1) We obtained good internal consistency and a reliable version of the Experience of Caring Inventory. (2) The strongest predictor of caregivers? low quality of life at one-year follow-up was the high score of the Self-Report Questionnaire 20 at time zero, with worse mental health related to lower quality of life. Conclusion: The Brazilian version of the Experience of Caring Experience Inventory is a valid tool to describe the experience of caring for a family member with severe mental illness in our culture, the main advantage of this scale is that it assesses the positive and negative aspects of care. Our study supports the idea that the well-being of individuals caring for and living with a family member with first psychotic episode is affected right at the onset of the disease and that their mental health is predictor of their quality of life.