Proyecto ReNACE. Convivencia de pacientes y familiares con la enfermedad de Parkinson: resultados preliminares de la Fase I

Portillo Vega, Mari Carmen; Senosiain García, Juana María; Arantzamendi Solabarrieta, María; Zaragoza Salcedo, Amparo; Navarta Sánchez, María Victoria; de Cerio Ayesa, Sara Díaz; Riverol Fernández, Mario; Martínez Vila, Eduardo; Luquin Piudo, María Rosario; Ursúa Sesma, María Eugenia; Corchón Arreche, Silvia; Moreno Lorente, Victoria

doi:10.1016/S2013-5246(12)70019-3

Información del artículo

Resumen

Bibliografía

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Estadísticas

Resumen

Introducción

En la bibliografía hay un vacío relacionado con la perspectiva holística del proceso de integración de la enfermedad de Parkinson en las vidas de pacientes y familiares.

Objetivo

Explorar el proceso de convivencia con la enfermedad de Parkinson de pacientes y familiares, así como los factores y los mecanismos que lo favorecen o inhiben.

Método

El proyecto ReNACE es un proyecto con metodología combinada, multicéntrico y multidisciplinario, de 3 años de duración, que consta de 2 fases (cualitativa y cuantitativa), realizado en la Clínica Universidad de Navarra, un centro de Salud del Servicio Navarro de Salud-Osasunbidea y la Asociación Navarra de Parkinson. Se presentan resultados preliminares de la Fase I Cualitativa. Se han recogido datos con entrevistas semiestructuradas, hojas sociodemográficas y escalas (estadio Parkinson). Se ha realizado un análisis de contenido comparativo (programa NVivo9) y un análisis estadístico (SPSS 15.0).

Resultados

Participaron 15 pacientes con enfermedad de Parkinson y 16 familiares. Su mediana y rango intercuartil de edad eran de 73 (65–76,25) y 65 (59,5–74) años, respectivamente. En el proceso de adaptación al Parkinson, se destacan dos etapas dinámicas: 1) etapa extraordinaria, y 2) etapa de normalidad. Los principales factores y mecanismos que influían en la convivencia con el Parkinson eran: las estrategias de afrontamiento, el apoyo familiar, las redes personales y sociales, los recursos disponibles, así como la educación y la información.

Conclusiones

El proceso de convivencia con el Parkinson es un proceso dinámico y complejo, influido por factores relacionados con la enfermedad y mecanismos de personalidad que requieren un tratamiento más holístico.

Palabras clave:

Enfermedad de Parkinson

Adaptación psicológica

Habilidades de afrontamiento

Cuidadores familiares

Abstract

Introduction

There is a gap in the literature in relation to the holistic approach of the integration process of patients and relatives to Parkinson's disease (PD).

Aim

To explore the process of adaptation and living with PD experienced by patients and relatives, and the factors and mechanisms that ease or hinder this.

Methods

The ReNACE Project is a mixed method, multicentred and multidisciplinary Project (3 years) with two phases (qualitative and quantitative). It is being developed in the Clínica Universidad de Navarra, a health centre of the SNS-Osasunbidea, and the Navarre Parkinson Association. Preliminary results from phase I Qualitative are presented. Data were collected through semi-structured interviews, socio-demographic forms and scales (Parkinson staging). Comparative content (NVivo programme) and statistical analyses (SPSS 15.0) were performed.

Results

Fifteen patients with PD and 16 relatives participated in the study. Their median and interquartile range age was 73 (65–76.25) and 65 (59.5–74) years, respectively. Two main dynamic stages emerged regarding the adaptation process to PD: 1. Extraordinary Stage, 2. Normalisation Stage. The main factors and mechanisms that influenced the process of living with PD were: coping strategies, family support, personal and social networks, resources, and education and information.

Conclusions

Living with Parkinson's disease is a dynamic and complex process influenced by factors related to the disease and personality, which require a holistic approach.

Keywords:

Parkinson's disease

Psychological adjustment

Coping skills

Family caregivers

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*

Este trabajo ha obtenido el Premio Proyecto de Investigación en la XVII Reunión Anual de la SEDENE. Barcelona 2010.

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