Experiência com cuidados paliativos de cuidadores familiares de pacientes acompanhados ambulatoriamente em um Hospital Universitário do interior de São Paulo. Pesquisa qualitativa
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Data
2022-02-21
Autores
Pereira, Luana Ferreira
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Universidade Estadual Paulista (Unesp)
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Introdução: Os avanços na área da medicina a partir do século XX foram inúmeros e, desse modo, houve um aumento na expectativa de vida, levando a um aumento, nos hospitais, de pacientes com doenças avançadas, que podem receber cuidados desproporcionais à evolução de sua doença. Dessa forma, os cuidados paliativos se apresentam como uma assistência holística com o intuito de promover qualidade de vida, aliviar e prevenir o sofrimento. Nesse contexto insere-se os familiares que, da mesma maneira, devem receber os cuidados integralmente. Entretanto, pouco se sabe e se estuda sobre as vivências desses familiares. Objetivo: Compreender a experiência que cuidadores familiares de pacientes sob cuidados paliativos tem sobre tais cuidados. Método: Estudo exploratório com abordagem qualitativa, realizado em um Hospital Universitário do interior de São Paulo. Foram entrevistados sete cuidadores familiares de pacientes que recebiam cuidados paliativos há pelo menos 6 meses. A amostra foi obtida intencionalmente e seu fechamento foi determinado quando ocorreu a saturação teórica. Para a coleta dos dados foram realizadas entrevistas semiestruturadas pela pesquisadora principal do estudo, sendo cinco delas por meio eletrônico e duas presenciais. Os participantes foram caracterizados quanto à idade, ocupação, grau de parentesco com o(a) paciente, tempo em que é responsável por cuidar do(a) paciente e se é a primeira vez que possui contato com alguém que recebe cuidados paliativos. As entrevistas foram áudio gravadas, transcritas na íntegra e tiveram os dados analisados na perspectiva da análise de conteúdo, utilizando-se como referencial teórico o Manual de Cuidados Paliativos da Academia Nacional de Cuidados Paliativos. As entrevistas foram descartadas após o processo de transcrição. Resultados e discussão: A idade dos cuidadores familiares variou entre 28 e 63 anos, sendo estes majoritariamente do sexo feminino e apenas um participante do sexo masculino. Os cuidadores variaram entre filha, nora, esposo e companheira. O tempo em que cuidavam do familiar doente variou de 5 meses a 16 anos. Através das narrativas, permitiu-se construir duas categorias de análise: percepção sobre cuidados paliativos e experiências como cuidador. Os resultados revelaram que a maioria dos participantes não possuía conhecimento prévio sobre cuidados paliativos e encontraram, nessa abordagem, um espaço de acolhimento e boa comunicação com a equipe de saúde. Destacaram ainda o quanto a disponibilidade e acessibilidade da equipe provoca efeitos positivos no tratamento do familiar doente. As narrativas trouxeram vivências de sobrecarga com os cuidados, dificuldades em acompanhar rotineiramente o processo evolutivo da doença de um familiar e suas necessidades em compartilhar esses cuidados com outras pessoas da família ou cuidadores. Percebeu-se que mesmo aqueles que já haviam estado nesse papel anteriormente, a experiência atual pôde refletir desafios e angústias atuais e pertinentes a essa vivência diária. Conclusão: É indispensável o cuidado holístico no processo de adoecimento dos indivíduos e isso inclui o acolhimento da família e dos cuidadores, identificando e acolhendo as demandas e dificuldades que estes enfrentam ao cuidar de um paciente recebendo cuidados paliativos. Ressalta-se a importância da boa comunicação da equipe de saúde durante todo esse processo para que seja possível conhecer as experiências vividas pelos familiares e cuidadores e, assim, traçar um planejamento de cuidados que contemple os valores e necessidades do indivíduo e que esclareça ao paciente e seu cuidador os objetivos e conceitos da abordagem de cuidados paliativos.
Introduction: Advances in medicine from the 20th century onwards were numerous and, thus, there was an increase in life expectancy, leading to an increase in hospitals, of patients with advanced diseases, who may receive care that is disproportionate to the evolution of their disease. Thus, palliative care presentes itself as a holistic care with the aim of promoting quality of life, relieving and preventing suffering. In this context, family members are included who, in the same way, must receive full care. However, little is known and studied about the experiences of these family members. Objective: To comprehend the experience that the family caregivers of patients under palliative care have with such assistance. Method: Exploratory study with a qualitative approach, carried out at a University Hospital in the interior of São Paulo. Seven family caregivers of patients who had been receiving Palliative Care for at least 6 months were interviewed. The sample was intentionally obtained and its closure was determined when theoretical saturation occurred. For data collection, semi-structured interviews were carried out by the main researcher of the study, five of them by electronic means and two in person. Participants were characterized by age, occupation, degree of kinship with the patient, time in which they are responsible for caring for the patient and whether it is the first time they have had contact with someone who receives palliative care. The interviews were audio-recorded, transcribed in full, and the data were analyzed from the perspective of content analysis, using the Palliative Care Manual of the National Academy of Palliative Care as a theoretical framework. Interviews were discarded after the transcription process. Results and discussion: The age of family caregivers ranged between 28 and 63 years old, being mostly female, with only one male participant. Caregivers varied between daughter, daughter-in-law, husband and partner. The time they took care of the sick family member ranged from 5 months to 16 years. Through the narratives, it was allowed to build two categories of analysis: perception of palliative care and experiences such as caregiver. The results revealed that most participants had no prior knowledge about palliative care and found, in this approach, a welcoming space and good communication with the health team. They also highlighted how the availability and accessibility of the team causes positive effects in the treatment of the sick family member. The narratives brought experiences of burden with care, difficulty in routinely monitoring the evolutionary process of a family member's disease and their needs to share this care with other family members or caregivers. It was noticed that even for those who had been in this role before, the current experience could reflect current challenges and anxieties relevant to this daily experience. Conclusion: Holistic care is essential in the illness process of individuals and this includes welcoming the family and caregivers, identifying and welcoming the demands and difficulties they face when caring for a patient receiving palliative care. The importance of good communication by the health team throughout this process is highlighted, so that it is possible to know the experiences lived by family members and caregivers and, thus, draw up a care plan that addresses the values and needs of the individual and that clarifies the patient. and their caregiver the goals and concepts of the palliative care approach.
Introduction: Advances in medicine from the 20th century onwards were numerous and, thus, there was an increase in life expectancy, leading to an increase in hospitals, of patients with advanced diseases, who may receive care that is disproportionate to the evolution of their disease. Thus, palliative care presentes itself as a holistic care with the aim of promoting quality of life, relieving and preventing suffering. In this context, family members are included who, in the same way, must receive full care. However, little is known and studied about the experiences of these family members. Objective: To comprehend the experience that the family caregivers of patients under palliative care have with such assistance. Method: Exploratory study with a qualitative approach, carried out at a University Hospital in the interior of São Paulo. Seven family caregivers of patients who had been receiving Palliative Care for at least 6 months were interviewed. The sample was intentionally obtained and its closure was determined when theoretical saturation occurred. For data collection, semi-structured interviews were carried out by the main researcher of the study, five of them by electronic means and two in person. Participants were characterized by age, occupation, degree of kinship with the patient, time in which they are responsible for caring for the patient and whether it is the first time they have had contact with someone who receives palliative care. The interviews were audio-recorded, transcribed in full, and the data were analyzed from the perspective of content analysis, using the Palliative Care Manual of the National Academy of Palliative Care as a theoretical framework. Interviews were discarded after the transcription process. Results and discussion: The age of family caregivers ranged between 28 and 63 years old, being mostly female, with only one male participant. Caregivers varied between daughter, daughter-in-law, husband and partner. The time they took care of the sick family member ranged from 5 months to 16 years. Through the narratives, it was allowed to build two categories of analysis: perception of palliative care and experiences such as caregiver. The results revealed that most participants had no prior knowledge about palliative care and found, in this approach, a welcoming space and good communication with the health team. They also highlighted how the availability and accessibility of the team causes positive effects in the treatment of the sick family member. The narratives brought experiences of burden with care, difficulty in routinely monitoring the evolutionary process of a family member's disease and their needs to share this care with other family members or caregivers. It was noticed that even for those who had been in this role before, the current experience could reflect current challenges and anxieties relevant to this daily experience. Conclusion: Holistic care is essential in the illness process of individuals and this includes welcoming the family and caregivers, identifying and welcoming the demands and difficulties they face when caring for a patient receiving palliative care. The importance of good communication by the health team throughout this process is highlighted, so that it is possible to know the experiences lived by family members and caregivers and, thus, draw up a care plan that addresses the values and needs of the individual and that clarifies the patient. and their caregiver the goals and concepts of the palliative care approach.
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Palavras-chave
Cuidados paliativos, Familiares, Cuidadores, Experiência, Pesquisa qualitativa, Hospitais universitários, Palliative care, Caregivers