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Resiliência familiar no contexto da doença crónica pediátrica : impacto do desgaste do Cuidador familiar e do crescimento pós-traumático nas respostas de doping dos pais cuidadores
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Abstract(s)
Introdução: A doença crónica pediátrica tem sido conceptualizada como um acontecimento extremamente disruptivo que ultrapassa o nível individual, refletindo-se em toda a família. A partir do momento em que há um diagnóstico, os papéis e as responsabilidades dos cuidadores mudam para se acomodar às necessidades da criança. O coping é considerado um processo que contribui ativamente para a adaptação familiar à doença. O principal objetivo desta investigação é avaliar o coping e a sua relação com diversos fatores clínicos, sociodemográficos e psicossociais, nomeadamente o desgaste do cuidador familiar e o crescimento pós-traumático (CPT).
Método: A amostra é constituída por 127 participantes (M = 40,25; DP = 7,38) que são ou foram cuidadores de crianças/ adolescentes com doenças crónicas, cujo diagnóstico foi feito entre os 0 e os 19 anos e fluentes na língua portuguesa. Através da plataforma Google forms, os participantes responderam ao protocolo de investigação, no qual constou o questionário de dados sociodemográficos e clínicos, o Coping Health Inventory for Parents (CHIP), a Escala da sobrecarga do cuidador (EDCF) e o Inventário de Desenvolvimento Pós-Traumático (IDPT).
Resultados: Verificou-se uma correlação negativa e significativa entre o coping e o desgaste do cuidador (r = 0,19; p = 0,031) e por outro lado verificou-se uma correlação positiva e significativa entre o coping e o CPT (r = 0,38; p ≤ 0,001). O modelo final de coping foi significativo (F (5,121) = 10,98; p ≤ 0,01) e constituído pelas variáveis Relações com os Outros (β = 0,33; p ≤ 0,01), Desgaste da Relação (β = 0,15; p = 0,058), Desgaste Objetivo (β = -0,21; p = 0,009), Crescimento Pessoal (β = 2,61; p = 0,010) e situação atual (β = 2,10; p = 0,038) são as principais preditoras do coping nesta amostra.
Conclusão: Este estudo contribui com importantes evidências para o estudo do coping no Modelo de Resiliência Familiar, sendo que se propõem que estudos futuros incluam variáveis positivas para a compreensão do coping, neste modelo.
Introduction: Paediatric chronic diseases have been conceptualized as an extremely disruptive event that goes beyond the individual level, reflecting on the whole family. From the moment a diagnosis is made, caregivers' roles and responsibilities change to accommodate the child's needs. Coping is considered a process that actively contributes to family adaptation to the disease. The main objective of this investigation is to evaluate Coping and its relationship with several clinical, sociodemographic and psychosocial factors, namely the Caregiver burden and Post-traumatic growth (PTG). Method: The sample consists of 127 participants (M = 40.25; SD = 7.38) who are or have been caregivers of children/adolescents with chronic diseases, whose diagnosis was made between 0 and 19 years old and fluent in the Portuguese language. Through the Google forms platform, participants responded to the investigation protocol, which included the questionnaire of sociodemographic and clinical data, the Coping Health Inventory for Parents (CHIP), the Caregiver Burden Scale (MBCBS) and the Post-Traumatic Growth Inventory (PTGI). Results: There was a negative and significant correlation between coping and caregiver burden (r = -0.19; p = 0.031) and on the other hand, there was a positive and significant correlation between coping and PTG (r = 0 , 38; p ≤ 0.001). The final coping model was significant (F (5,121) = 10.98; p ≤ 0.01) and consisted of the variables Relations with others (β = 0.33; p ≤ 0.01), Relationship Burden (β = 0.15; p = 0.058), Objective Burden (β = -0.21; p = 0.009), Personal Growth (β = 2.61; p = 0.010) and current situation (β = 2.10; p = 0.038) are the main predictors of coping in this sample. Conclusion: This study provides important evidence for the study of coping in the Resiliency Model of Family Stress, and it is proposed that future studies include positive variables for understanding coping in this model.
Introduction: Paediatric chronic diseases have been conceptualized as an extremely disruptive event that goes beyond the individual level, reflecting on the whole family. From the moment a diagnosis is made, caregivers' roles and responsibilities change to accommodate the child's needs. Coping is considered a process that actively contributes to family adaptation to the disease. The main objective of this investigation is to evaluate Coping and its relationship with several clinical, sociodemographic and psychosocial factors, namely the Caregiver burden and Post-traumatic growth (PTG). Method: The sample consists of 127 participants (M = 40.25; SD = 7.38) who are or have been caregivers of children/adolescents with chronic diseases, whose diagnosis was made between 0 and 19 years old and fluent in the Portuguese language. Through the Google forms platform, participants responded to the investigation protocol, which included the questionnaire of sociodemographic and clinical data, the Coping Health Inventory for Parents (CHIP), the Caregiver Burden Scale (MBCBS) and the Post-Traumatic Growth Inventory (PTGI). Results: There was a negative and significant correlation between coping and caregiver burden (r = -0.19; p = 0.031) and on the other hand, there was a positive and significant correlation between coping and PTG (r = 0 , 38; p ≤ 0.001). The final coping model was significant (F (5,121) = 10.98; p ≤ 0.01) and consisted of the variables Relations with others (β = 0.33; p ≤ 0.01), Relationship Burden (β = 0.15; p = 0.058), Objective Burden (β = -0.21; p = 0.009), Personal Growth (β = 2.61; p = 0.010) and current situation (β = 2.10; p = 0.038) are the main predictors of coping in this sample. Conclusion: This study provides important evidence for the study of coping in the Resiliency Model of Family Stress, and it is proposed that future studies include positive variables for understanding coping in this model.
Description
Dissertação de Mestrado apresentada no ISPA – Instituto Universitário para obtenção de grau de Mestre na especialidade de Psicologia da Saúde
Keywords
Doenças crónicas pediátricas cuidadores informais coping Desgaste do cuidador Crescimento pós traumático chronic diseases; ; Coping; ; Post-Traumatic Growth. Informal caregivers Caregiver burden Post-traumatic growth