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Aspetos psicossociais da fibrose quística: revisão sistemática e dados descritivos
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Advisor(s)
Abstract(s)
A fibrose quística é uma doença genética cuja esperança média de vida tem vindo a aumentar
tal como a relevância face aos aspetos psicossociais nesta população. Esta dissertação
apresenta dois estudos. Num primeiro estudo, foi realizada uma revisão sistemática com o
objetivo de identificar e sumariar os aspetos psicossociais associados à vivência com esta
doença pela população adulta. Foram incluídos um total de sete estudos conduzidos em países
ocidentais. O total de participantes foi de 389, dos quais 377 existe informação relativamente
ao sexo (57.03% masculino e 42.97% feminino) e à média de idades (25.3). Os resultados
identificam pelo menos um aspeto psicossocial que afeta a população com fibrose quística,
existindo um consenso face à escassez da investigação. Num segundo estudo foi realizado
uma investigação quantitativa transversal com o objetivo de avaliar dados descritivos de
algumas variáveis psicológicas, nomeadamente ansiedade perante a morte, suporte social,
qualidade de vida e regulação emocional de adultos com fibrose quística. Participaram 14
pacientes, quatro homens (28.6%) e 10 mulheres (71.4%), com idades entre os 18 e 43
(25.93%). Os dados descritivos mostram que o suporte social se adequa às necessidades, têm
uma qualidade de vida considerada normal, não revelam dificuldades em regular as suas
emoções e não demonstram valores relevantes de ansiedade perante a morte. Tendo por base
os dois estudos existe uma necessidade de atualização do conhecimento sobre os aspetos
psicossociais que impactam esta população, contribuindo para uma abordagem mais completa
e eficaz no tratamento de adultos com fibrose quística.
ABSTRACT: Cystic fibrosis is a genetic disease whose average life expectancy has been increasing, as has the relevance of psychosocial aspects in this population. This dissertation presents two studies. The first study conducted a systematic review aimed at identifying and summarizing the psychosocial aspects associated with living with this disease in the adult population. A total of seven studies conducted in Western countries were included. The total number of participants was 389, of which 377 had available information regarding gender (57.03% male and 42.97% female) and average age (25.3 years). The results identified at least one psychosocial aspect affecting the cystic fibrosis population, with a consensus on the lack of research in this area. In a second study, a cross-sectional quantitative investigation was conducted with the aim of assessing descriptive data on certain psychological variables, namely death anxiety, social support, quality of life, and emotional regulation in adults with cystic fibrosis. Fourteen patients participated, four men (28.6%) and ten women (71.4%), aged between 18 and 43 (mean 25.93). The descriptive data show that social support meets their needs, they have a quality of life considered normal, do not show difficulties in regulating their emotions, and do not demonstrate relevant levels of death anxiety. Based on the two studies, there is a need to update knowledge on the psychosocial aspects that impact this population, contributing to a more comprehensive and effective approach to the treatment of adults with cystic fibrosis.
ABSTRACT: Cystic fibrosis is a genetic disease whose average life expectancy has been increasing, as has the relevance of psychosocial aspects in this population. This dissertation presents two studies. The first study conducted a systematic review aimed at identifying and summarizing the psychosocial aspects associated with living with this disease in the adult population. A total of seven studies conducted in Western countries were included. The total number of participants was 389, of which 377 had available information regarding gender (57.03% male and 42.97% female) and average age (25.3 years). The results identified at least one psychosocial aspect affecting the cystic fibrosis population, with a consensus on the lack of research in this area. In a second study, a cross-sectional quantitative investigation was conducted with the aim of assessing descriptive data on certain psychological variables, namely death anxiety, social support, quality of life, and emotional regulation in adults with cystic fibrosis. Fourteen patients participated, four men (28.6%) and ten women (71.4%), aged between 18 and 43 (mean 25.93). The descriptive data show that social support meets their needs, they have a quality of life considered normal, do not show difficulties in regulating their emotions, and do not demonstrate relevant levels of death anxiety. Based on the two studies, there is a need to update knowledge on the psychosocial aspects that impact this population, contributing to a more comprehensive and effective approach to the treatment of adults with cystic fibrosis.
Description
Dissertação de Mestrado rapresentada no ISPA – Instituto
Universitário, para obtenção do grau de Mestre
na especialidade de Psicologia da Saúde.
Keywords
Fibrose quística Doença Adultos Aspetos psicossociais Revisão sistemática Cystic Fibrosis Disease Adults Psychosocial aspects Systematic review