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Qualidade de vida e expectativas futuras : perspectiva de vida de tetraplégicos com suporte ventilatório de longa duração
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Orientador(es)
Resumo(s)
O presente estudo pretende mostrar a perspectiva individual de qualidade de vida e expectativas futuras de pessoas com grandes limitações físicas (tetraplegia) e necessidade de suporte ventilatório de longa duração.
Foi utilizado o SEIQOL-DW como instrumento de colheita de dados sobre qualidade de vida sob a perspectiva individual do sujeito e a análise de conteúdo de entrevistas semi-estruturadas para melhor complementar os dados obtidos. Para tal, foram entrevistados os indivíduos residentes na Unidade de Cuidados Continuados a Doentes Ventilados Crónicos do Hospital de Curry Cabral.
A necessidade de apoios constantes, quer mecânicos (ventilação mecânica de longa duração) quer humanos (cuidadores a tempo inteiro), leva os indivíduos a experienciarem uma diminuição da autonomia e sensação de perda de controlo da sua vida no geral.
O choque, a revolta, a negação são fases relatadas no processo de adaptação à doença. A sensação de “fardo”, o sentimento de inutilidade, a perda da dignidade, de ser visto como ser de valor e importante, são entraves a essa adaptação e levam, por vezes, a referências ao desejo de antecipar a morte.
A vida altera-se e os valores essenciais para a sua qualidade de vida passam a focar-se no conforto, nos afectos e nas relações interpessoais. A família é um bem precioso e a vontade de sair do ambiente institucionalizado para o seio familiar é uma referência constante.
O futuro, apesar de incerto, continua a ser visto com esperança.
A necessidade da manutenção da autonomia é um aspecto fulcral na perspectiva destes indivíduos, associando-o à sensação de controlo nas suas próprias vidas.
Os profissionais de saúde são referidos em todo este processo, desde o diagnóstico ao momento actual, salientando-se a sua importância nas diferentes fases, principalmente na relação e comunicação com os indivíduos e suas famílias.
The work herein intends to demonstrate the individual experience in terms of quality of life and future expectations of patients physically limited (tetraplegia) and with need for long-term mechanical ventilation. Data collection on the quality of life regarding the patient’s perspective was carried using SEIQOL-DW, completed with analysis of semi-structure interview. Data collection was complemented with the analysis of semi-structure interviews of the patients at the chronic ventilator-dependent unit in an acute-care at Curry Cabral Hospital. The permanent need for either mechanical ventilation support and human (long term care), induces the patient to experience a decrease in their autonomy whilst developing a sense of loss of control over their own life. Denial, shock and anger are phases usually reported during the process of adaptation to an illness. Feelings of being a burden, uselessness, loss of dignity, sense of not being valued and important, are constraints to that adaptation which at times results in wishes of an early death. Life changes and the essential quality of life values become more focused on comfort, affection and social relationships. Family and family values are a constant reference with patients that wish to leave professional care institutions. Although uncertain, there is hope for a better tomorrow. Staying autonomous is paramount for these individuals, which on their perspective is associated with a sense of controlling their own lives. Health carers are referred throughout this process from the diagnostics to the present moment. Particularly, these are important throughout the different phases of adaptation, but more importantly as a vehicle between the patients and their families.
The work herein intends to demonstrate the individual experience in terms of quality of life and future expectations of patients physically limited (tetraplegia) and with need for long-term mechanical ventilation. Data collection on the quality of life regarding the patient’s perspective was carried using SEIQOL-DW, completed with analysis of semi-structure interview. Data collection was complemented with the analysis of semi-structure interviews of the patients at the chronic ventilator-dependent unit in an acute-care at Curry Cabral Hospital. The permanent need for either mechanical ventilation support and human (long term care), induces the patient to experience a decrease in their autonomy whilst developing a sense of loss of control over their own life. Denial, shock and anger are phases usually reported during the process of adaptation to an illness. Feelings of being a burden, uselessness, loss of dignity, sense of not being valued and important, are constraints to that adaptation which at times results in wishes of an early death. Life changes and the essential quality of life values become more focused on comfort, affection and social relationships. Family and family values are a constant reference with patients that wish to leave professional care institutions. Although uncertain, there is hope for a better tomorrow. Staying autonomous is paramount for these individuals, which on their perspective is associated with a sense of controlling their own lives. Health carers are referred throughout this process from the diagnostics to the present moment. Particularly, these are important throughout the different phases of adaptation, but more importantly as a vehicle between the patients and their families.
Descrição
Tese de mestrado, Cuidados Paliativos, Faculdade de Medicina, Universidade de Lisboa, 2012
Palavras-chave
Qualidade de vida Expectativas Tetraplegia Ventilação mecânica de longa duração Teses de mestrado - 2012