Nursing professors participate in conference on Parkinson's disease with project ReNACE
To know the process towards living with this disease, of patients and relatives, as well as the determining factors and mechanisms in it, is the core topic of the project
On the occasion of the celebration of World Parkinson's Day, the Spanish Parkinson's Federation (FEP) and association Navarra de Parkinson (ANAPAR) have launched the awareness campaign "Can you imagine life with Parkinson's?". Likewise, ANAPAR organized the Parkinson's conference in Navarra 2012, with the celebration of round tables on "research in Parkinson's", in Pamplona, Tudela and Estella. In this context, several researchers from project ReNACE (Recovery, Normalization, Acceptance, Coexistence with the Disease) participated, led by the School of Nursing of the University of Navarra, and in which ANAPAR, the Clínica Universidad de Navarra and the San Juan Health Center (SNS-Osasunbidea).
The project ReNACE focuses on gaining in-depth knowledge of the process of patients and family members living with Parkinson's disease, as well as the determining factors and mechanisms involved. As the researchers emphasized, "the focus of the project is not the disease itself, but how it affects the affected person and his or her family".
Professors Mª Carmen Portillo, Amparo Zaragoza and Juana Mª Senosiain took part in the conference , who presented the preliminary results of the first phase of project , which show two main stages of coexistence with the disease: the extraordinary stage in which feelings of frustration, loss of control and self-esteem, "of not being able to cope with the disease" are manifested and which does not always coincide with the diagnosis or exacerbation of Parkinson's disease as might be expected; and the normalization stage which, on the contrary, is reflected as that in which the patient and/or family live positively with the disease, leading a normal and active life, according to their expectations.
The speakers explained that these stages are not always simultaneous among patients and family members and the diversity of repercussions that motor and non-motor symptoms have on people affected by this disease. They also presented the influential factors that are emerging from the research on this process of coexistence: the family, social networks, resources of different kinds, the Education-information.
Finally, they highlighted several of the positive coping mechanisms that the participants mentioned as useful: "living in the present without anticipating the future, adjusting expectations to their real status , developing a positive-optimistic attitude towards life, feeling the recognition of their suffering, extracting positive aspects from status". They also emphasized the idea that project aims to give a voice to patients and their relatives, and that their partnership is essential to successfully develop and fill in the second phase of the program.