Níveis de mindfulness e injustiça percebida em indivíduos com Doença de Huntington e familiares
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Data
2017-10-31
Autores
Silva, Tânia Fernandes [UNIFESP]
Orientadores
Demarzo, Marcelo Marcos Piva [UNIFESP]
Tipo
Tese de doutorado
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Introdução: A Doença de Huntington (D.H.) é uma desordem neurodegenerativa rara, caracterizada por movimentos involuntários, disfunções psiquiátricas, emocionais e cognitivas, alterações de personalidade, depressão e demência, com progressão inexorável até a morte. Indivíduos com D.H. perdem, gradativamente, sua independência nas atividades de vida diária, necessitando de cuidados intensivos de seus familiares e/ou cuidadores em tempo integral. Nos anos 1970, Mindfulness (atenção plena) começou a ser estudada como uma intervenção comportamental em saúde mental, sendo que a evidência científica atual indica que o estado mental de mindfulness é positivamente associado a uma variedade de indicadores de saúde mental e bem-estar subjetivo. O sentimento de injustiça percebida acompanhada pela ideia de necessidade de reparação por parte da sociedade tem associação negativa com a capacidade de recuperação ou resiliência frente às condições crônicas que afetam a saúde. Objetivos: Verificar os níveis de mindfulness e injustiça percebida entre indivíduos com a D.H. e seus familiares. Além de descrever as características sociodemográficas de indivíduos com D.H. e seus familiares; e verificar a associação dos níveis de mindfulness e injustiça percebida com outras variáveis de bem-estar e saúde mental. Métodos: Estudo analítico correlacional, transversal, com medidas obtidas por meio de autorrelato (questionários estruturados e validados). A amostra foi constituída por 140 indivíduos, 105 familiares e 35 pessoas com D.H.. Resultados: Em relação aos indivíduos com D.H., a maioria era do gênero masculino (42,9%), com idade variando de 29 a 80 anos, sendo a média de 54,0 ± 12,4. A maioria estava na fase moderada da doença (48,6%). Em relação às variáveis de interesse, observou-se ainda que as escalas que apresentaram com índices elevados foram: a escala MAAS (M. 1,72, DP=0,13); Resiliência (M. 43,23, DP=3,30); PANAS, nos últimos dias, para AN (M. 27,43, DP=2,52); e IEQ (M. 45,88, DP=0,68). Apenas a correlação entre o domínio Isolamento e AAQ2 foram significativas (p=0,017). Os resultados dos dados sócio demográficos nos familiares apontou que a maioria dos indivíduos era do gênero feminino (94,3%) e com grau de parentesco como “filhas” dos doentes (36,2%). Para as escalas aplicadas os índices que se apresentaram altos foram: Autocompaixão (M. 2,40, DP=0,14); AAQ II (M. 37,58, DP=1,12); Resiliência (M. 61,13, DP=2,15); e IEQ (M. 42,08, DP=1,37). Para as correlações significativas obteve-se: AAQII e MAAS (p= 0,039); IEQ e MAAS (p= 0,018); IEQ e Autojulgamento (p=0,041); Atenção Plena (p=0,026) e Isolamento (p=0,046). Para AAQII e PANAS, o AN, nos últimos dias, (p=0,001) e nas últimas semanas (p=0,028); IEQ e PANAS para o AN nos últimos dias (p=0,046); e IEQ e PANAS AN, nas últimas semanas (p=0,010). Conclusões: Os principais achados esperados estão relacionados aos níveis de IEQ, que se apresentaram elevados em ambas as amostras. Para os níveis de atenção plena, observaram-se índices baixos de autocompaixão tanto para os doentes quanto para os familiares, e também elevados níveis de sofrimento psíquico e resiliência nas duas populações. Entretanto, vale destacar que os níveis de resiliência encontrados, não estavam de acordo com o que era esperado neste estudo, se apresentando elevados nas duas amostras
Introduction: Huntington's Disease (D.H.) is a rare neurodegenerative disorder characterized by involuntary movements, psychiatric, emotional and cognitive dysfunctions, personality changes, depression and dementia, with relentless progression to death. Individuals with D.H. gradually lose their independence in activities of daily living, requiring the intensive care of their relatives and / or caregivers full time. In the 1970s, Mindfulness began to be studied as a behavioral intervention in mental health, and current scientific evidence indicates that the mental state of mindfulness is positively associated with a variety of indicators of mental health and subjective well-being . The perceived sense of injustice accompanied by the idea of a need for reparation by society has a negative association with the capacity for recovery or resilience to the chronic conditions that affect health. Objectives: To verify the levels of mindfulness and perceived injustice between individuals with D.H. and their families. In addition to describing the sociodemographic characteristics of individuals with D.H. and their relatives; and to verify the association of levels of mindfulness and perceived injustice with other variables of well-being and mental health. Methods: Cross - sectional, correlational analytical study with measures obtained through self - report (structured and validated questionnaires). The sample consisted of 140 individuals, 105 family members and 35 people with D.H.. Results: In the case of individuals with D.H., the majority were male (42.9%), ranging in age from 29 to 80 years, with a mean of 54.0 ± 12.4. The majority of the individuals were in the moderate phase of the disease (48.6%). Regarding the variables of interest, it was also observed that the scales presented with high indices were: the MAAS scale (M. 1.72, SD = 0.13); Resilience (M. 43.23, SD = 3.30); PANAS, in recent days, for AN (M. 27.43, SD = 2.52); and IEQ (M. 45.88, SD = 0.68). Only the correlation between the domain Isolation and AAQ2 were significant (p = 0.017). The results of the socio-demographic data in the relatives showed that the majority of the individuals were female (94.3%) and had a relative degree of kinship (36.2%). For the applied scales the indices that presented high were: Autocompaixão (M. 2,40, SD = 0,14); AAQ II (M. 37.58, SD = 1.12); Resilience (M. 61.13, SD = 2.15); and IEQ (M. 42.08, SD = 1.37). For the significant correlations we obtained: AAQII and MAAS (p = 0.039); IEQ and MAAS (p = 0.018); IEQ and Self-Assessment (p = 0.041); Full Attention (p = 0.026) and Isolation (p = 0.046). For AAQII and PANAS, the AN, in the last days, (p = 0.001) and in the last weeks (p = 0.028); IEQ and PANAS for AN in the last days (p = 0.046); and IEQ and PANAS AN, in the last weeks (p = 0.010). Conclusions: The main expected results are related to the IEQ levels, which were high in both samples. Low levels of self-pity for both patients and relatives were observed for the levels of mindfulness, as well as high levels of psychic distress and resilience in both populations. However, it is worth noting that the levels of resilience found were not in agreement with what was expected in this study, presenting high in both samples.
Introduction: Huntington's Disease (D.H.) is a rare neurodegenerative disorder characterized by involuntary movements, psychiatric, emotional and cognitive dysfunctions, personality changes, depression and dementia, with relentless progression to death. Individuals with D.H. gradually lose their independence in activities of daily living, requiring the intensive care of their relatives and / or caregivers full time. In the 1970s, Mindfulness began to be studied as a behavioral intervention in mental health, and current scientific evidence indicates that the mental state of mindfulness is positively associated with a variety of indicators of mental health and subjective well-being . The perceived sense of injustice accompanied by the idea of a need for reparation by society has a negative association with the capacity for recovery or resilience to the chronic conditions that affect health. Objectives: To verify the levels of mindfulness and perceived injustice between individuals with D.H. and their families. In addition to describing the sociodemographic characteristics of individuals with D.H. and their relatives; and to verify the association of levels of mindfulness and perceived injustice with other variables of well-being and mental health. Methods: Cross - sectional, correlational analytical study with measures obtained through self - report (structured and validated questionnaires). The sample consisted of 140 individuals, 105 family members and 35 people with D.H.. Results: In the case of individuals with D.H., the majority were male (42.9%), ranging in age from 29 to 80 years, with a mean of 54.0 ± 12.4. The majority of the individuals were in the moderate phase of the disease (48.6%). Regarding the variables of interest, it was also observed that the scales presented with high indices were: the MAAS scale (M. 1.72, SD = 0.13); Resilience (M. 43.23, SD = 3.30); PANAS, in recent days, for AN (M. 27.43, SD = 2.52); and IEQ (M. 45.88, SD = 0.68). Only the correlation between the domain Isolation and AAQ2 were significant (p = 0.017). The results of the socio-demographic data in the relatives showed that the majority of the individuals were female (94.3%) and had a relative degree of kinship (36.2%). For the applied scales the indices that presented high were: Autocompaixão (M. 2,40, SD = 0,14); AAQ II (M. 37.58, SD = 1.12); Resilience (M. 61.13, SD = 2.15); and IEQ (M. 42.08, SD = 1.37). For the significant correlations we obtained: AAQII and MAAS (p = 0.039); IEQ and MAAS (p = 0.018); IEQ and Self-Assessment (p = 0.041); Full Attention (p = 0.026) and Isolation (p = 0.046). For AAQII and PANAS, the AN, in the last days, (p = 0.001) and in the last weeks (p = 0.028); IEQ and PANAS for AN in the last days (p = 0.046); and IEQ and PANAS AN, in the last weeks (p = 0.010). Conclusions: The main expected results are related to the IEQ levels, which were high in both samples. Low levels of self-pity for both patients and relatives were observed for the levels of mindfulness, as well as high levels of psychic distress and resilience in both populations. However, it is worth noting that the levels of resilience found were not in agreement with what was expected in this study, presenting high in both samples.
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SILVA, Tânia Fernandes. Níveis de Mindfulness e injustiça percebida em indivíduos com Doença de Huntington e familiares. 2017. 133 f. Tese (Doutorado) – Escola Paulista de Medicina, Universidade Federal de São Paulo, São Paulo, 2017.