Elementos clave en el proceso de convivencia con la enfermedad de Parkinson de pacientes y familiares cuidadores

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 & Yahr y 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.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

Implementation of a multidisciplinary psychoeducational intervention for Parkinson's disease patients and carers in the community: study protocol

Background: Parkinson’s disease progressively limits patients at different levels and as a result family members play a key role in their care. However, studies show lack of an integrative approach in Primary Care to respond to the difficulties and psychosocial changes experienced by them. The aim of this study is to evaluate the effects of a multidisciplinary psychoeducational intervention focusing on improving coping skills, the psychosocial adjustment to Parkinson’s disease and the quality of life in patients and family carers in a Primary Care setting. Methods: This quasi-experimental study with control group and mixed methods was designed to evaluate a multidisciplinary psychoeducational intervention. Based on the study power calculations, 100 people with Parkinson’s disease and 100 family carers will be recruited and assigned to two groups. The intervention group will receive the ReNACE psychoeducational intervention. The control group will be given a general educational programme. The study will be carried out in six community-based health centres. The results obtained from the two groups will be collected for evaluation at three time points: at baseline, immediately after the intervention and at 6 months post-intervention. The results will be measured with these instruments: the Quality of Life Scale PDQ39 for patients and the Scale of Quality of Life of Care-givers SQLC for family carers, and for all participants the Psychosocial Adjustment to Illness scale and the Brief COPE Inventory. Focus groups will be organised with some patients and family carers who will have received the ReNACE psychoeducational intervention and also with the healthcare professionals involved in its development. Discussion: An important gap exists in the knowledge and application of interventions with a psychosocial approach for people with PD and family carers as a whole. This study will promote this comprehensive approach in Primary Care, which will clearly contribute in the existing knowledge and could reduce the burden of PD for patients and family carers, and also in other long-term conditions

Elementos clave en el proceso de convivencia con la enfermedad de Parkinson de pacientes y familiares cuidadores

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 & Yahr y 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.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

Implementation of a multidisciplinary psychoeducational intervention for Parkinson's disease patients and carers in the community: study protocol

Background: Parkinson’s disease progressively limits patients at different levels and as a result family members play a key role in their care. However, studies show lack of an integrative approach in Primary Care to respond to the difficulties and psychosocial changes experienced by them. The aim of this study is to evaluate the effects of a multidisciplinary psychoeducational intervention focusing on improving coping skills, the psychosocial adjustment to Parkinson’s disease and the quality of life in patients and family carers in a Primary Care setting. Methods: This quasi-experimental study with control group and mixed methods was designed to evaluate a multidisciplinary psychoeducational intervention. Based on the study power calculations, 100 people with Parkinson’s disease and 100 family carers will be recruited and assigned to two groups. The intervention group will receive the ReNACE psychoeducational intervention. The control group will be given a general educational programme. The study will be carried out in six community-based health centres. The results obtained from the two groups will be collected for evaluation at three time points: at baseline, immediately after the intervention and at 6 months post-intervention. The results will be measured with these instruments: the Quality of Life Scale PDQ39 for patients and the Scale of Quality of Life of Care-givers SQLC for family carers, and for all participants the Psychosocial Adjustment to Illness scale and the Brief COPE Inventory. Focus groups will be organised with some patients and family carers who will have received the ReNACE psychoeducational intervention and also with the healthcare professionals involved in its development. Discussion: An important gap exists in the knowledge and application of interventions with a psychosocial approach for people with PD and family carers as a whole. This study will promote this comprehensive approach in Primary Care, which will clearly contribute in the existing knowledge and could reduce the burden of PD for patients and family carers, and also in other long-term conditions