Experiences of patients with Parkinson’s disease belonging to an association. A qualitative approach

Abstract

Introduction

Parkinson’s disease (PD) affects the physical, cognitive, emotional, and social domains of people who suffer it. A good strategy for patients is to belong to an Association, using the services they offer.

Objective

The aim of this study was to explore the experiences and perceptions of patients with PD in a Parkinson’s Association.

Methods

A sample of participants with PD who met the inclusion criteria was selected through purpose and theoretical sampling. Semi-structured qualitative interviews were used to collect the data, which was analyzed by thematic phenomenological analysis. Different strategies such as triangulation between researchers were used to ensure methodological rigor.

Results

The data analyzed from 10 participants led to two themes: the context of the Association, where the importance of interdisciplinary treatments and the relationship with other patients is collected; and how they see their future, which describes the future perspectives that patients with PD have.

Discussion

Patients agree on the importance of belonging to the Association, feeling part of a group, while benefiting from receiving therapies from the interdisciplinary team. The Association plays a relevant role in the evolution of the disease, as it influences how patients imagine their future. Developing strategies based on a good therapeutic alliance with professionals at the service of patients promotes the empowerment, adherence and continuity of treatments at home, which results in improving the quality of life of patients with PD.