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O processo de envelhecimento simultâneo do cuidador familiar e da pessoa com deficiência - Uma perspetiva partilhada
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| 1.81 MB | Adobe PDF |
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Abstract(s)
Esta dissertação centra-se no estudo do envelhecimento simultâneo do cuidador familiar e da pessoa com Dificuldades Intelectuais e Desenvolvimentais (DID), procurando compreender as vivências necessidades e expectativas de ambos perante este processo partilhado. O envelhecimento da população tem vindo a provocar profundas alterações nas dinâmicas sociais, colocando desafios acrescidos aos sistemas de proteção social, nomeadamente no que diz respeito ao cuidado formal e informal prestado a pessoas com DID.
Com base numa abordagem mista, recorreu-se à realização de entrevistas semiestruturadas a cuidadores informais e à aplicação de questionários a pessoas com DID, tendo como contexto de estudo a realidade institucional da CERCIPORTALEGRE. Os dados recolhidos permitiram identificar fatores como o desgaste emocional do cuidador, a falta de respostas institucionais adequadas, os receios quanto ao futuro e o impacto da longevidade crescente sobre a rede familiar de suporte. Simultaneamente observou-se uma consciência clara por parte das pessoas com DID relativamente ao envelhecimento dos seus cuidadores e às mudanças que isso acarreta.
Os resultados obtidos destacam a importância de uma intervenção multidisciplinar, centrada na pessoa e orientada para a qualidade de vida, bem como a necessidade urgente de reforçar os apoios aos cuidadores informais assim como reestruturar e reforçar o cuidado formal, numa lógica de corresponsabilização entre Estado, comunidade e família. A investigação contribui, assim, para a construção de conhecimento em torno de uma problemática emergente e ainda pouco discutida no contexto português.
This dissertation focuses on the simultaneous ageing of family caregivers and individuals with Intellectual and Developmental Disabilities (IDD), aiming to understand the experiences, needs, and expectations of both parties throughout this shared process. Population ageing has brought significant changes to social dynamics, posing increased challenges to social protection systems, particularly regarding the formal and informal care provided to people with IDD. Using a mixed approach, semi-structured interviews were conducted with informal caregivers, and questionnaires were administered to individuals with IDD, within the institutional context of CERCIPORTALEGRE. The data collected revealed factors such as caregiver emotional exhaustion, the lack of adequate institutional responses, concerns about the future, and the impact of increasing longevity on the family support network. At the same time, a clear awareness was observed among individuals with IDD regarding their caregivers' ageing and the changes it entails. The findings highlight the importance of a multidisciplinary, person-centred intervention focused on quality of life, as well as the urgent need to strengthen support for informal caregivers and to restructure and reinforce formal care systems. This must be done within a framework of shared responsibility between the State, the community, and the family. This research thus contributes to the body of knowledge surrounding an emerging and still under-discussed issue in the Portuguese context.
This dissertation focuses on the simultaneous ageing of family caregivers and individuals with Intellectual and Developmental Disabilities (IDD), aiming to understand the experiences, needs, and expectations of both parties throughout this shared process. Population ageing has brought significant changes to social dynamics, posing increased challenges to social protection systems, particularly regarding the formal and informal care provided to people with IDD. Using a mixed approach, semi-structured interviews were conducted with informal caregivers, and questionnaires were administered to individuals with IDD, within the institutional context of CERCIPORTALEGRE. The data collected revealed factors such as caregiver emotional exhaustion, the lack of adequate institutional responses, concerns about the future, and the impact of increasing longevity on the family support network. At the same time, a clear awareness was observed among individuals with IDD regarding their caregivers' ageing and the changes it entails. The findings highlight the importance of a multidisciplinary, person-centred intervention focused on quality of life, as well as the urgent need to strengthen support for informal caregivers and to restructure and reinforce formal care systems. This must be done within a framework of shared responsibility between the State, the community, and the family. This research thus contributes to the body of knowledge surrounding an emerging and still under-discussed issue in the Portuguese context.
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Keywords
envelhecimento simultâneo deficiência dificuldades intelectuais e desenvolvimentais (DID) cuidador informal cuidador formal políticas públicas concurrent aging disability intellectual and developmental disabilities (IDD) informal caregiver formal caregiver public policies