Publicador de contenidos
Back to 2015_05_14_opinion_enf_parkinson
Mari Carmen Portillo and Leire Ambrosio, ReNACE Program Coordinator and researcher at training, respectively. from department of Nursing Care for Adult Patients. School of Nursing, University of Navarra.
Living with Parkinson's disease
On the occasion of World Parkinson's Day, celebrated on April 11, the association Navarra Parkinson (ANAPAR) has organized several conferences, workshops and activities to discuss advances in the research of the disease, the benefits of music in its treatment or emotional care in the disease.
It has also dedicated an information table to the caregiver, a key role in living with Parkinson's, which usually falls on the relatives of the patient. Once the disease has been diagnosed, both sufferers and their relatives/caregivers experience important changes in their lives. Although there are treatments and actions that help to control some of the symptoms of the disease, there is still much to be done to provide social and health care that considers the individual person as well as his or her environment and family, and therefore also takes into account the psychological, social and spiritual aspects. To address these issues, the University of Navarra created in 2009 an innovative research program that is being implemented in the autonomous community of Navarra: the ReNACE Program.
This is a research which integrates several projects focused on the process of coexistence of patients and families/caregivers with a chronic disease, such as Parkinson's disease. The general goal is to improve the coexistence and quality of life of people with this diagnosis and their families/caregivers.
The research team of the ReNACE Program has more than 10 years of research experience in the area of Neurology and Neurological Nursing. With the same interest and concerns, different researchers from the fields of Psychology, Sociology and Social work and various institutions such as ANAPAR, the University of La Rioja and the National Epidemiology Center have joined this group . The aim of this program is to promote a participatory research in Navarra through the development, implementation, and assessment of interventions that favor the daily life of patients with Parkinson's disease and their relatives/caregivers. For this purpose, different programs of study are being carried out in Navarra, which are also being extended to the whole of Spain.
The results obtained in the programs of study carried out so far in the ReNACE Program show that living with Parkinson's disease is a complex process in which are core topic acceptance and coping with it, self-management in day-to-day life or integration and adaptation to the new status that it generates. In addition, family support, values and beliefs or personality are some of the factors that favor or hinder this process.
Currently, the ReNACE Program is carrying out a study that has as goal promote the development of positive coping skills that promote a better psychosocial adaptation to the disease. To this end, psychoeducational workshops are being given during these months, both at the University of Navarra and at the San Juan Health Center (SNS-Osasunbidea), aimed at patients with Parkinson's disease and their relatives/caregivers in which general information about the disease and the available resources are provided Education .
Research such as the ReNACE Program is possible thanks to the participation and partnership of people with Parkinson's disease and, of course, their relatives/caregivers. Promoting and enhancing the involvement in these programs of study would help to develop health programs that really facilitate and improve the coexistence and quality of life of patients and their families/caregivers.