RESUMO
BACKGROUND: Parkinson's disease has a considerable impact on people's lives. It is necessary to identify the key elements that influence the process of living with Parkinson's disease so that health professionals can help patients and their relatives to live as well as possible with the changes and limitations produced by the disease. MATERIAL AND METHODS: A qualitative descriptive study was realized. This study corresponded to the first phase of a sequential, exploratory design (mixed method) that in turn included a quantitative phase. A multicentre project was carried out. Convenience sampling was applied to collect data, a semi-structured interview was realized individually with patients and carer-relatives and two questionnaires with patients: the Hoehn & Yahr scale and the PDNMS questionnaire. Content analysis of the interviews and a statistical description of the questionnaires were used. RESULTS: The sample was made up of 46 participants. Three key elements were identified in the process of living with Parkinson's disease: acceptance, adaptation and self-management. These elements conditioned the modes of living with Parkinson's disease: positive living, characterized by feelings of harmony, balance and naturalness; negative living characterized be feelings of frustration, loss of control and self-esteem. CONCLUSIONS: It is essential for health professionals to have a deep understanding of these elements, as well as of the factors that favor or hinder them. To the extent that research in this field progresses and effective interventions are identified, comprehensive patient care will be improved in consonance with the new directives for chronicity.
Assuntos
Cuidadores , Relações Familiares , Doença de Parkinson , Idoso , Feminino , Humanos , Masculino , Inquéritos e QuestionáriosRESUMO
Fundamento: La enfermedad de Parkinson produce un impacto considerable en la vida de las personas. Es necesario identificar los elementos clave que influyen en el proceso de convivencia con la enfermedad de Parkinson para que los profesionales de la salud puedan ayudar a los pacientes y sus familias a convivir lo mejor posible con los cambios y limitaciones producidos por la enfermedad. Material y método: Se llevó a cabo un estudio cualitativo descriptivo. Este estudio se corresponde con la primera fase de un diseño exploratorio secuencial (Mixed-methods) que incluye a su vez una fase cuantitativa. Se realizó un proyecto multicéntrico. Para la recogida de datos se aplicó un muestreo de conveniencia y se utilizó una entrevista semi-estructurada realizada individualmente a pacientes y familiares cuidadores y dos cuestionarios para pacientes: la Escala de Hoehn & Yahry el Cuestionario PDNMS. Se realizó un análisis de contenido de las entrevistas y estadístico descriptivo de los cuestionarios. Resultados: La muestra la constituyeron 46 participantes. Se identificaron tres elementos clave en el proceso de convivencia con la enfermedad de Parkinson: aceptación, adaptación y automanejo. Estos elementos condicionaron dos modos de convivencia con la enfermedad de Parkinson: una convivencia positiva, caracterizada por sentimientos de armonía, equilibrio, y naturalidad; y una convivencia negativa caracterizada por sentimientos de frustración, pérdida de control y autoestima. Conclusiones: Es esencial que los profesionales de la salud conozcan a fondo estos elementos, así como los factores que los favorecen o dificultan. En la medida que se propicie la investigación en este ámbito y se identifiquen intervenciones efectivas se mejorará la atención integral de la personas en consonancia con las nuevas directrices para la cronicidad (AU)
Background: Parkinson's disease has a considerable impact on peoples lives. It is necessary to identify the key elements that influence the process of living with Parkinsons disease so that health professionals can help patients and their relatives to live as well as possible with the changes and limitations produced by the disease. Material and methods: A qualitative descriptive study was realized. This study corresponded to the first phase of a sequential, exploratory design (mixed method) that in turn included a quantitative phase. A multicentre project was carried out. Convenience sampling was applied to collect data, a semi-structured interview was realized individually with patients and carer-relatives and two questionnaires with patients: the Hoehn & Yahr scale and the PDNMS questionnaire. Content analysis of the interviews and a statistical description of the questionnaires were used. Results: The sample was made up of 46 participants. Three key elements were identified in the process of living with Parkinsons disease: acceptance, adaptation and self-management. These elements conditioned the modes of living with Parkinsons disease: positive living, characterized by feelings of harmony, balance and naturalness; negative living characterized be feelings of frustration, loss of control and self-esteem. Conclusions: It is essential for health professionals to have a deep understanding of these elements, as well as of the factors that favor or hinder them. To the extent that research in this field progresses and effective interventions are identified, comprehensive patient care will be improved in consonance with the new directives for chronicity (AU)
