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Necessidades dos cuidadores informais de doentes com esclerose lateral amiotrófica: uma revisão integrativa da literatura
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Abstract(s)
A Esclerose Lateral Amiotrófica é uma doença neurodegenerativa que leva à gradual perda de células motoras na medula espinhal, tronco cerebral e córtex motor. Devido ao facto de ser uma doença altamente incapacitante, o portador enfrenta dificuldades em exercer a sua autonomia e muitas vezes vivencia um contexto de extrema fragilidade e de dependência completa, o que obriga à presença em tempo integral de um cuidador para o assistir nas atividades do dia-a-dia. Os cuidadores informais destes doentes enfrentam diariamente o desafio de cuidar de uma pessoa em situação de doença de rápida evolução, perda das capacidades físicas e cognitivo/comportamentais, etc. E, para além disto, é também posta a prova a sua própria saúde física, psicológica e emocional. Cuidar de um doente com ELA, pode ser um processo complexo, preenchido por sentimentos e emoções ambíguas. De modo, é possível perceber a importância de avaliar as suas necessidades específicas.
O presente estudo tem como objetivo conhecer as necessidades dos cuidadores informais de doentes com Esclerose Lateral Amiotrófica. Para isso, realizou-se uma revisão integrativa da literatura recorrendo às bases de dados CINAHL (via EBSCO), MEDLINE (via PubMed) e EMBASE. Os investigadores efetuaram uma pesquisa da literatura disponível nos últimos cinco anos e que estivessem publicados em inglês, português ou espanhol. Foram encontrados um total de 104 artigos após a pesquisa nas diferentes bases de dados, tendo sido selecionados apenas sete artigos para incluírem esta revisão.
A partir desta investigação foi possível conhecer as necessidades dos cuidadores de doentes com ELA mais evidenciadas na literatura, bem como perceber que estas estão essencialmente relacionadas com três grandes categorias, como as necessidades relacionadas com o cuidador informal, as necessidades relacionadas com o exercício do papel de cuidador informal e as necessidades relacionadas com o contexto.
Amyotrophic Lateral Sclerosis is a neurodegenerative disease that leads to the gradual loss of motor cells in the spinal cord, brainstem and motor cortex. Due to the fact that it is a highly disabling disease, the patient faces difficulties in exercising their autonomy and often experiences a context of extreme fragility and complete dependence, which requires the full-time presence of a caregiver to assist in the activities of the day to day. The informal caregivers of these patients face the daily challenge of caring for a person with a rapidly evolving disease, loss of physical and cognitive/behavioral capabilities, etc. And, in addition to this, your own physical, psychological and emotional health is also put to the test. Caring for an ALS patient can be a complex process, filled with ambiguous feelings and emotions. So, you can see the importance of assessing your specific needs. This study aims to understand the needs of informal caregivers of patients with Amyotrophic Lateral Sclerosis. For this, an integrative literature review was carried out using the Cinahl (via EBSCO), Medline (via PubMed) and Embase databases. The investigators carried out a search of the literature available in the last five years and that had been published in English, Portuguese or Spanish. A total of 104 articles were found after searching the different databases, with only seven articles having been selected to include this review. From this investigation, it was possible to know the needs of caregivers of patients with ALS most evidenced in the literature, as well as realizing that these are essentially related to three major categories, such as the needs related to the informal caregiver, the needs related to the exercise of the role of informal caregiver and the needs related to the context.
Amyotrophic Lateral Sclerosis is a neurodegenerative disease that leads to the gradual loss of motor cells in the spinal cord, brainstem and motor cortex. Due to the fact that it is a highly disabling disease, the patient faces difficulties in exercising their autonomy and often experiences a context of extreme fragility and complete dependence, which requires the full-time presence of a caregiver to assist in the activities of the day to day. The informal caregivers of these patients face the daily challenge of caring for a person with a rapidly evolving disease, loss of physical and cognitive/behavioral capabilities, etc. And, in addition to this, your own physical, psychological and emotional health is also put to the test. Caring for an ALS patient can be a complex process, filled with ambiguous feelings and emotions. So, you can see the importance of assessing your specific needs. This study aims to understand the needs of informal caregivers of patients with Amyotrophic Lateral Sclerosis. For this, an integrative literature review was carried out using the Cinahl (via EBSCO), Medline (via PubMed) and Embase databases. The investigators carried out a search of the literature available in the last five years and that had been published in English, Portuguese or Spanish. A total of 104 articles were found after searching the different databases, with only seven articles having been selected to include this review. From this investigation, it was possible to know the needs of caregivers of patients with ALS most evidenced in the literature, as well as realizing that these are essentially related to three major categories, such as the needs related to the informal caregiver, the needs related to the exercise of the role of informal caregiver and the needs related to the context.
Description
Projeto de Graduação apresentado à Universidade Fernando Pessoa para obtenção do grau de Licenciada em Enfermagem
Keywords
Esclerose lateral amiotrófica Cuidadores Necessidades Amyotrophic lateral sclerosis Caregivers Needs