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Abstract(s)
Um número significativo de pessoas com necessidades paliativas é cuidado no domicílio por longos períodos. A díade, cuidador informal e pessoa doente, é fundamental no sucesso dos cuidados. Pouco se sabe sobre o cuidado construído entre os dois e a forma como este decorre à medida que progride a doença. Compreendê-lo, através daqueles que vivem a experiência, é determinante para identificar áreas onde a enfermagem pode potenciar o sucesso deste cuidado. O objetivo deste estudo foi compreender o processo de cuidado informal entre pessoa com necessidades paliativas e cuidador informal no domicílio. Adotou-se a metodologia Grounded Theory, com recolha de dados, entre junho e outubro de 2022, através de entrevistas e observação a nove doentes e nove cuidadores informais, no domicílio dos participantes. O processo de análise comparativa constante e codificação ocorreram em simultâneo à recolha de dados e utilizou-se o software Nvivo® para gestão de dados. Através da análise dos dados construiu-se a teoria substantiva – O processo de cuidado informal com a pessoa com necessidades paliativas no domicílio. Um processo complexo e dinâmico que ocorre em torno de quatro eixos estruturantes: Os pilares básicos da interação na construção do cuidado explicam como a díade interage para construir cuidados no domicílio e estão ligados à categoria central – vinculação afetiva. Os elementos da construção do cuidado informal estão na base da estruturação dos cuidados. As condições que influenciam o cuidado, ajudam a compreender o que facilita ou dificulta o cuidado informal. A trajetória de cuidados é um processo que ocorre ao longo de cinco fases, em cada uma existem etapas, que se intersetam e marcam o percurso da díade. Como resposta aos desafios que decorrem das várias fases, identificam-se estratégias que são mobilizadas pelas díades para viabilizarem os cuidados no domicílio, num processo de ajuste contínuo e de capacitação crescente.
A significant number of people with palliative care needs are cared at home for long periods. The dyad, informal caregiver and patient, is fundamental to the success of care. Little is known about care built between these and the way it takes place as the disease progresses. Understanding it, through those who live the experience, is crucial to identify areas where nursing can enhance the success of this care. The aim of this study was to understand the informal care process between the person with palliative care needs and the informal caregiver at home. It was adopted as methodology the Grounded Theory and data collection took place at participants’ home, through interviews and observation of nine patients and nine informal caregivers, between June and October 2022. Constant comparative analysis and coding occurred simultaneously with data collection and Nvivo® software was used for data management. Through data analysis, was constructed a substantive theory – The process of informal care with person with palliative needs at home A complex and dynamic process that is explain through four structuring axes. The basic pillars of interaction in the construction of care explain how the dyad interacts to build care and are linked to the central category – affective attachment. The elements of the construction of informal care are at the basis of the structuring of care. The conditions that influence the informal care, help us to understand what can facilitating or complicating the process. The trajectory of care is a process that take place over five phases, where in each one there are steps that intersect and mark the course of the dyad. In response to the challenges arising from the various phases, strategies are identified that are mobilized by the dyads to make care at home feasible, in a process of continuous adjustment and growing capacity.
A significant number of people with palliative care needs are cared at home for long periods. The dyad, informal caregiver and patient, is fundamental to the success of care. Little is known about care built between these and the way it takes place as the disease progresses. Understanding it, through those who live the experience, is crucial to identify areas where nursing can enhance the success of this care. The aim of this study was to understand the informal care process between the person with palliative care needs and the informal caregiver at home. It was adopted as methodology the Grounded Theory and data collection took place at participants’ home, through interviews and observation of nine patients and nine informal caregivers, between June and October 2022. Constant comparative analysis and coding occurred simultaneously with data collection and Nvivo® software was used for data management. Through data analysis, was constructed a substantive theory – The process of informal care with person with palliative needs at home A complex and dynamic process that is explain through four structuring axes. The basic pillars of interaction in the construction of care explain how the dyad interacts to build care and are linked to the central category – affective attachment. The elements of the construction of informal care are at the basis of the structuring of care. The conditions that influence the informal care, help us to understand what can facilitating or complicating the process. The trajectory of care is a process that take place over five phases, where in each one there are steps that intersect and mark the course of the dyad. In response to the challenges arising from the various phases, strategies are identified that are mobilized by the dyads to make care at home feasible, in a process of continuous adjustment and growing capacity.
Description
Keywords
cuidado informal domicílio enfermagem grounded theory cuidados paliativos informal care home nursing grounded theory palliative care