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Advisor(s)
Abstract(s)
Introdução: O aparecimento de uma doença neurodegenerativa, crónica e incapacitante implica mudanças profundas na dinâmica familiar, com exigências acrescidas para a prestação dos cuidados de suporte à família e à pessoa com Transtorno Neurocognitivo (TNC). A família é o principal recurso da pessoa que adoece, assumindo-se, os seus constituintes, como cuidadores familiares. As repercussões na família são sentidas a diferentes níveis como: físico, psíquico, social, económico e na sua dinâmica relacional. A autonomia da pessoa doente encontra-se comprometida, refletindo-se na diminuição da qualidade de vida dos membros do agregado familiar e na necessidade de uma reestruturação dos papéis familiares. A reorganização dos cuidados de saúde tem conduzido ao aumento de cuidados sob a responsabilidade da família, aumentando a sobrecarga nos diferentes membros, nomeadamente em situações de promoção de saúde e/ou tratamento de doença. Com os desafios da readaptação familiar, que o aparecimento do TNC provoca, os enfermeiros necessitam aprofundar os seus conhecimentos sobre as implicações do aparecimento do TNC nos diferentes membros do agregado familiar, contribuindo para a identificação de necessidades e o desenvolvimento de uma prática baseada na evidência. Objetivo geral: Construir e validar um instrumento de avaliação do impacto, nos membros do agregado familiar, do aparecimento do TNC num dos seus elementos. Metodologia: Realizou-se um estudo de carácter metodológico, em três etapas: Revisão da literatura; Procura de consenso através do método Delphi e estudo de validação do instrumento através da sua aplicação a uma amostra de conveniência de 262 familiares de pessoas que coabitam diariamente com a pessoa com TNC. Resultados: Com a realização da scoping review verificou-se que os cuidados às pessoas com demência são assegurados por cuidadores informais, na sua grande maioria mulheres, destacando-se o papel das esposas, filhas e noras. O impacto resultante do surgimento desta doença tem sido amplamente estudado, com incidência, nas repercussões positivas e negativas que advêm do cuidar. No estudo de consenso através do método delphi realizado, dos 86 itens submetidos ao consenso de peritos, foram sugeridas adaptações em 10 itens para que ficassem mais claros e mais compreensíveis. A versão final, nesta etapa, ficou constituída por 68 itens. Os resultados permitiram encontrar, entre peritos, um consenso que nos permitiu validar o conteúdo de uma proposta de instrumento de avaliação do impacto do transtorno neurocognitivo na família. O instrumento foi testado numa amostra total de 262 participantes: 104 cuidadores principais com uma média de idades 60 anos (DP= 13.7) e 158 familiares que coabitam diariamente com a pessoa com TNC com uma média de idades 49.94 anos (DP= 13.72). Após a análise fatorial o instrumento ficou composto por 30 itens distribuidos por 4 dimensões “Dimensão emocional”, “Dimensão económica”, “Dimensão relações familiares” e “Dimensão procura de suporte” com uma variância explicada de 54.96 %. O coeficiente do alpha de Cronbach calculado 0.899 permite afirmar que o instrumento apresenta uma boa consistência interna. Conclusão: Não só o cuidador informal, mas também a restante família têm especial interesse pelo bem-estar, saúde e doença dos seus membros, tornando-se importante envolvê-la como parte integrante da investigação e da prática de cuidados de Enfermagem. O instrumento construído apresenta uma consistência interna elevada e do ponto de vista da conceção do fenómeno em estudo agrupa-se em quatro dimensões, todas elas intimamente ligadas à adaptação da família ao aparecimento do transtorno neurocognitivo num dos seus membros.
Introduction: The onset of a neurodegenerative, chronic and disabling disease implies profound changes in the family dynamics, with increased demands for the provision of supportive care to the family and to the person with Neurocognitive Disorder (NCD). The family is the leading resource of the person who becomes ill and its members take on the role of family caregivers. The repercussions on the family come at different levels: physical, psychological, social, economic, and in their relational dynamics. The patient's autonomy is compromised, which becomes clear in the decreased quality of life of the household members and the need to restructure family roles. The reorganization of health care has led to an increase of care under the responsibility of the family, increasing the burden on the different members, particularly in situations of health improvement and/or disease treatment. With the challenges of family readjustment brought forward by the onset of NCD, nurses must expand their knowledge about the implications of this onset of NCD in the different members of the household, contributing to identify their needs and to the development of an evidence-based practice. General objective: To build and validate a tool that would assess the impact on household members brought by the onset of NCD in a member of the household. Methodology: The study was carried out in three stages: Literature review; Delphi study and application of the tool to a convenience sampling of 262 relatives of people who live with the person suffering from NCD on a daily basis. Results: The scoping review showed that the care provided to people with dementia is ensured by informal caregivers, most of whom are women, particularly wives, daughters and daughters-in-law. The impact resulting from the onset of this disease has been widely studied, with a focus on caregiving positive and negative repercussions. In this Delphi study, of the 86 items submitted to expert consensus, adaptations were suggested in 10 items, in order to make them clearer and more understandable. The final version was composed of 68 items. The results allowed us to find, among experts, a consensus that allowed us to validate the content of a proposed tool to assess the impact of neurocognitive disorder on the family. The tool was tested on a total sample of 262 participants: 104 primary caregivers with a mean age of 60 years (SD= 13.7) and 158 family members who cohabit daily with the person with NCD with a mean age of 49.94 years (SD= 13.72). After the factor analysis, the tool was composed of 30 items divided into 4 dimensions: Emotional Dimension, Economic Dimension, Family Relations Dimension and Support-seeking Dimension with an explained variance of 54.96%. The 0.899 calculated Cronbach's alpha coefficient allows us to state that the tool has a sound internal consistency. Conclusion: It is not just about the informal caregiver, the remaining family also have a special interest in their members' well-being, health and disease, making it important to involve them as an integral part of Nursing care research and practice. The tool has great internal consistency and, from the point of view of the conception of the phenomenon under study, it is thereby grouped into four dimensions, all of which are closely related to the family's adaptation to the onset of the neurocognitive disorder in one of its members.
Introduction: The onset of a neurodegenerative, chronic and disabling disease implies profound changes in the family dynamics, with increased demands for the provision of supportive care to the family and to the person with Neurocognitive Disorder (NCD). The family is the leading resource of the person who becomes ill and its members take on the role of family caregivers. The repercussions on the family come at different levels: physical, psychological, social, economic, and in their relational dynamics. The patient's autonomy is compromised, which becomes clear in the decreased quality of life of the household members and the need to restructure family roles. The reorganization of health care has led to an increase of care under the responsibility of the family, increasing the burden on the different members, particularly in situations of health improvement and/or disease treatment. With the challenges of family readjustment brought forward by the onset of NCD, nurses must expand their knowledge about the implications of this onset of NCD in the different members of the household, contributing to identify their needs and to the development of an evidence-based practice. General objective: To build and validate a tool that would assess the impact on household members brought by the onset of NCD in a member of the household. Methodology: The study was carried out in three stages: Literature review; Delphi study and application of the tool to a convenience sampling of 262 relatives of people who live with the person suffering from NCD on a daily basis. Results: The scoping review showed that the care provided to people with dementia is ensured by informal caregivers, most of whom are women, particularly wives, daughters and daughters-in-law. The impact resulting from the onset of this disease has been widely studied, with a focus on caregiving positive and negative repercussions. In this Delphi study, of the 86 items submitted to expert consensus, adaptations were suggested in 10 items, in order to make them clearer and more understandable. The final version was composed of 68 items. The results allowed us to find, among experts, a consensus that allowed us to validate the content of a proposed tool to assess the impact of neurocognitive disorder on the family. The tool was tested on a total sample of 262 participants: 104 primary caregivers with a mean age of 60 years (SD= 13.7) and 158 family members who cohabit daily with the person with NCD with a mean age of 49.94 years (SD= 13.72). After the factor analysis, the tool was composed of 30 items divided into 4 dimensions: Emotional Dimension, Economic Dimension, Family Relations Dimension and Support-seeking Dimension with an explained variance of 54.96%. The 0.899 calculated Cronbach's alpha coefficient allows us to state that the tool has a sound internal consistency. Conclusion: It is not just about the informal caregiver, the remaining family also have a special interest in their members' well-being, health and disease, making it important to involve them as an integral part of Nursing care research and practice. The tool has great internal consistency and, from the point of view of the conception of the phenomenon under study, it is thereby grouped into four dimensions, all of which are closely related to the family's adaptation to the onset of the neurocognitive disorder in one of its members.
Description
Keywords
Demência Relações familiares Enfermagem Adaptação e estudos de validação Dementia Family relations Nursing Adaptation and validation studies