Perspectivas dos Pacientes com Doença Pulmonar Obstrutiva Crônica (DPOC) e de seus cuidadores frente ao uso da Oxigenoterapia Domiciliar Prolongada (ODP)
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2017-02-14
Autores
Bueno, Giovanna Hass [UNESP]
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Universidade Estadual Paulista (Unesp)
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Introdução: A Oxigenoterapia Domiciliar Prolongada (ODP) é um tratamento utilizado para pacientes com DPOC grave. O tratamento apresenta inúmeras vantagens, como o aumento da capacidade funcional, melhoras nos sintomas, mas os usuários também reconhecem que há desvantagens no uso deste. Identificam-se alguns problemas, como barreiras físicas e psicossociais e desafios emocionais. Muitas vezes os usuários necessitam de auxílios para desenvolver atividades cotidianas, precisando de cuidados de parentes e amigos, exercendo o cuidado informal. É fundamental que a equipe tenha conhecimento das mudanças na vida do paciente e de seus cuidadores, dos enfrentamentos dos desafios com a terapia, de forma a otimizar o cuidado, fazendo as adaptações necessárias a eles e com a equipe, proporcionando qualidade de vida para ambos. Também é essencial reconhecer as vantagens que a terapia causa tanto para o usuário tanto para o cuidador, fortalecendo o uso da ODP e incentivando os cuidadores nas tarefas prestadas ao paciente. Objetivo: Conhecer a visão dos pacientes com diagnóstico de DPOC sobre o uso da ODP e de seus cuidadores sobre o cuidado com um paciente em uso da ODP. Método: Trata-se de estudo de caráter qualitativo. Foram entrevistados 14 pacientes com seus respectivos cuidadores, atendidos no Ambulatório de Oxigenoterapia do Hospital das Clínicas de Botucatu, da Faculdade de Medicina de Botucatu com diagnóstico de DPOC durante o segundo semestre de 2015. Foi utilizada para os pacientes uma entrevista semi-estruturada, com as seguintes questões norteadoras: “O que significa para você usar o Oxigênio?”, “O que mudou em sua vida depois que você começou a usar a ODP?”, “O que mudou na vida das pessoas que convivem com você em sua casa depois de começar a usar ODP?” e “ você tem atividade de lazer?” . Para os cuidadores, foi utilizada também uma entrevista semi-estruturada, com as seguintes questões norteadoras: “O que significa para você cuidar de uma pessoa que depende do uso da ODP?”, “O que mudou em sua vida depois que você começou a cuidar desse usuário?”, “O que mudou na vida das pessoas que convivem com você depois que começou a cuidar?” e “você tem atividade de lazer?”. Foi aplicada também a escala Caregiver Burden scale (CB scale), para medir o impacto subjetivo das doenças crônicas na vida dos cuidadores. As entrevistas foram avaliadas pela “Análise do Conteúdo de Bardin” e a CS scale foi analisada através do cálculo da média aritmética dos escores atribuídos aos 22 itens. Resultados: Os pacientes tinham idade média de 73 + 10,4anos, sendo 6 do sexo feminino, 1 analfabeto e 13 com escolaridade inferior ao ensino médio. Todos ex tabagistas, fumava em média 25 + 15,9 cigarros ao dia. O tempo médio de uso de O2 foi 3,5 ±2,0 anos, a média diária de horas de uso foi 18,8 ± 4,6. Das falas surgiram quatro categorias: Fortalezas da terapia: melhora nos sintomas, da qualidade de vida e do aspecto emocional. Desafios da terapia: isolamento social, dificuldade no envolvimento emocional, piora no autocuidado, funcionalidade do concentrador O2 e acessórios e aspectos econômicos. Alterações emocionais, sociais, da vida cotidiana e econômicas na vida do usuário: processo de adaptação com dificuldades de aceitação, mudança na autoestima e da personalidade e mudança das atividades de lazer. Alterações na relação familiar do usuário: isolamento social do cuidador, envolvimento emocional dos familiares e comprometimento do cuidador. Os cuidadores tinham idade média de 63 +11 anos, sendo 11 do sexo feminino e todos alfabetizados. O tempo médio de cuidado diário prestado foi de 19 + 8,2 horas, e a média em anos dedicados ao cuidado foi 2,7 + 2, apenas 1 cuidador tinha o trabalho remunerado, e 2 tiveram seu estado de saúde piorado depois que passaram a ser cuidador. A categoria mais sobrecarregada da CB scale foi o ambiente, seguido da decepção, tensão geral, envolvimento emocional, e por último isolamento. Das falas surgiram quatro categorias: Fortalezas do cuidador: melhora do estado geral e da capacidade funcional do usuário, facilidades no manuseio do equipamento e importância do aspecto emocional do cuidador. Desafios do cuidador: envolvimento emocional, capacidade funcional do cuidador, mudança na vida cotidiana, funcionalidade do concentrador O2 e acessórios, aspecto econômico, aspectos da personalidade do usuário. Alterações emocionais, sociais, da vida cotidiana e econômicas na vida do cuidador: isolamento social, envolvimento emocional, autonomia, aspectos da personalidade do cuidador, alteração na vida cotidiana, sexualidade, autoestima, atividades de lazer. Alterações na relação familiar do cuidador: aspecto da personalidade, estrutura familiar. Conclusão: Diante desse estudo, são nítidas as mudanças no cotidiano e do comportamento dos usuários e de seus cuidadores. Frente a isso, é fundamental que a equipe esteja preparada para fornecer educação adequada a eles, para otimizar a utilização e o cuidado, diminuindo medo e barreiras com o tratamento.
Introduction: Long-term Oxygen Therapy (LTOT) is a treatment used for patients with severe COPD. The treatment has numerous advantages, such as increased functional capacity and improvements in symptons, but users also recognize that there are disadvantages in using it. Some problems like physical and psychosocial barriers and emotional challenges can be identified. Users often need help to develop everyday activities, needing care from relatives and friends, practicing informal care. It is essential that the team is aware of all the changes in the life of the patients and their caregivers and the challenges of the therapy itself, in order to optimize care, making necessary adjustments to them and the team, providing quality of life for both. It is also essential to recognize the benefits that the therapy brings to both, the user and the caregiver, by strengthening the use of LTOT and encouraging caregivers in the tasks provided to the patient. Objective: Identify the vision of patients with COPD about the use of LTOT as well as the vision of the caregivers about the care of a patient using LTOT. Methodology: This is a qualitative study. During the second semester of 2015, fourteen patients attended at the Oxygen Therapy Outpatient of Botucatu Clinic Hospital, of Botucatu Medicine College, and their respective caregivers were interviewed. A semi-structured interview was used for the patients, with the following guiding questions: “What does it mean for you to use oxygen?”, “What has changed in your life after you started using LTOT”, “What has changed in the lives of people who live with you in your home after you start using LTOT” and “Do you have any leisure activity?”. For the caregivers, a semi-structured interview was also used, with the following guiding questions: “What does it mean for you to take care of a person who depends on LTOT”, “What has changed in your life after you started taking care of this user?”, “What has changed in the lives of the people who live with you after you sarted taking care?” and “Do you have any leisure activity?”. The Caregiver Burden Scale (CB scale) was also applied to measure the subjective impact of chronic diseases on caregivers’ lives. The interviews were evaluated by the “Bardin Content Analysis” and the CB scale was anallyzed by calculating the arithmetic mean of the scores attributed to the 22 items. Results: Patients had a mean age of 73 + 10.4 years, of whom 6 were female, 1 was illiterate and 13 were under secondary school. All ex-smokers smoked, on average, 25 + 15.9 cigarettes a day. The mean time of O2 use was 3.5 ±2 years and the mean of daily hours use was 18.8 ± 4.6. Four categories emerged from the speeches: Strengths of therapy: Improvement in symptoms, quality of life and emotional aspects. Therapy challenges: Social isolation, difficulty in emotional involvement, worsening in self-care, functionality of the O2 concentrator and economic aspects. Emotional, social, daily and economic changes in the user’s life: Adaptation process with acceptance difficulties, changes in self-esteem, personality and leisure activities. User’s family relationship changes: Social isolation of the caregiver, emotional involvement of the family and commitment of the caregiver. The caregivers had a mean age of 63 + 11 years, of which 11 were female and all were literate. The daily care time mean was 19 + 8.2 hours and the mean of the years dedicated to care was 2.7 ± 2, only 1 caregiver had paid work and 2 had their health status worsened after becoming a caregiver. The most overloaded category of CB scale was the environment, followed by disappointment, general tension, emotional involvement and, ultimately, isolation. Four categories emerged from the speeches: Strengths of the caregiver: Improvement of the user’s general state and functional capacity, facility in the handling of the equipment and importance of the caregiver’s emotional aspect. Caregiver’s challenges: emotional involvement, functional capacity of the caregiver, change in daily life, functionality of the O2 concentrator and accessories, economic aspects and user’s personality aspects. Emotional, social, daily and economic changes in the caregiver’s life: Social isolation, emotional involvement, autonomy, caregiver’s personality aspects, change in daily life, sexuality, self-esteem and leisure activities. Caregiver’s family relationship changes: personality aspects and family structure. Conclusion: In face of this study, daily life changes and user’s and caregiver’s behavior changes are very clear. Therefore, the team needs to be prepared to provide adequate education to them in order to optimize use and care, reducing fear and barriers to use the treatment.
Introduction: Long-term Oxygen Therapy (LTOT) is a treatment used for patients with severe COPD. The treatment has numerous advantages, such as increased functional capacity and improvements in symptons, but users also recognize that there are disadvantages in using it. Some problems like physical and psychosocial barriers and emotional challenges can be identified. Users often need help to develop everyday activities, needing care from relatives and friends, practicing informal care. It is essential that the team is aware of all the changes in the life of the patients and their caregivers and the challenges of the therapy itself, in order to optimize care, making necessary adjustments to them and the team, providing quality of life for both. It is also essential to recognize the benefits that the therapy brings to both, the user and the caregiver, by strengthening the use of LTOT and encouraging caregivers in the tasks provided to the patient. Objective: Identify the vision of patients with COPD about the use of LTOT as well as the vision of the caregivers about the care of a patient using LTOT. Methodology: This is a qualitative study. During the second semester of 2015, fourteen patients attended at the Oxygen Therapy Outpatient of Botucatu Clinic Hospital, of Botucatu Medicine College, and their respective caregivers were interviewed. A semi-structured interview was used for the patients, with the following guiding questions: “What does it mean for you to use oxygen?”, “What has changed in your life after you started using LTOT”, “What has changed in the lives of people who live with you in your home after you start using LTOT” and “Do you have any leisure activity?”. For the caregivers, a semi-structured interview was also used, with the following guiding questions: “What does it mean for you to take care of a person who depends on LTOT”, “What has changed in your life after you started taking care of this user?”, “What has changed in the lives of the people who live with you after you sarted taking care?” and “Do you have any leisure activity?”. The Caregiver Burden Scale (CB scale) was also applied to measure the subjective impact of chronic diseases on caregivers’ lives. The interviews were evaluated by the “Bardin Content Analysis” and the CB scale was anallyzed by calculating the arithmetic mean of the scores attributed to the 22 items. Results: Patients had a mean age of 73 + 10.4 years, of whom 6 were female, 1 was illiterate and 13 were under secondary school. All ex-smokers smoked, on average, 25 + 15.9 cigarettes a day. The mean time of O2 use was 3.5 ±2 years and the mean of daily hours use was 18.8 ± 4.6. Four categories emerged from the speeches: Strengths of therapy: Improvement in symptoms, quality of life and emotional aspects. Therapy challenges: Social isolation, difficulty in emotional involvement, worsening in self-care, functionality of the O2 concentrator and economic aspects. Emotional, social, daily and economic changes in the user’s life: Adaptation process with acceptance difficulties, changes in self-esteem, personality and leisure activities. User’s family relationship changes: Social isolation of the caregiver, emotional involvement of the family and commitment of the caregiver. The caregivers had a mean age of 63 + 11 years, of which 11 were female and all were literate. The daily care time mean was 19 + 8.2 hours and the mean of the years dedicated to care was 2.7 ± 2, only 1 caregiver had paid work and 2 had their health status worsened after becoming a caregiver. The most overloaded category of CB scale was the environment, followed by disappointment, general tension, emotional involvement and, ultimately, isolation. Four categories emerged from the speeches: Strengths of the caregiver: Improvement of the user’s general state and functional capacity, facility in the handling of the equipment and importance of the caregiver’s emotional aspect. Caregiver’s challenges: emotional involvement, functional capacity of the caregiver, change in daily life, functionality of the O2 concentrator and accessories, economic aspects and user’s personality aspects. Emotional, social, daily and economic changes in the caregiver’s life: Social isolation, emotional involvement, autonomy, caregiver’s personality aspects, change in daily life, sexuality, self-esteem and leisure activities. Caregiver’s family relationship changes: personality aspects and family structure. Conclusion: In face of this study, daily life changes and user’s and caregiver’s behavior changes are very clear. Therefore, the team needs to be prepared to provide adequate education to them in order to optimize use and care, reducing fear and barriers to use the treatment.
Descrição
Palavras-chave
DPOC, Oxigenoterapia domiciliar prolongada, Qualidade de vida, Percepção, Cuidadores, Sobrecarga dos cuidadores, COPD, Long-term oxygen therapy, Perception, Quality of life, Caregivers, Caregivers overload