[Key elements for patients and caregivers in the process of living with Parkinson's disease].

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.