Patient Empowerment for Those Living with Parkinson’s Disease

Author:

Mathur Soania12,Mathur Sarika13

Affiliation:

1. The Global Alliance to End Parkinson’s Disease (PD Avengers), Vancouver, BC, Canada

2. UnshakeableMD, Oshawa, ON, Canada

3. Queens University, Kingston, ON, Canada

Abstract

Parkinson’s disease (PD) poses a number of challenges for individuals, affecting them physically, mentally, emotionally, and socially. The complex nature of PD necessitates empowering patients to address their unique needs and challenges, fostering improved health outcomes and a better quality of life. Patient empowerment is a multifaceted concept crucial to enhancing healthcare outcomes, particularly in chronic conditions such as PD. However, defining patient empowerment presents challenges due to its varied interpretations across disciplines and individuals. Essential components include access to information, development of self-care skills, and fostering a supportive environment. Strategies for patient empowerment encompass health literacy, education, and shared decision-making within a trusted healthcare provider-patient relationship. In PD, patient empowerment is crucial due to the disease’s phenotypic variability and subjective impact on quality of life. Patients must navigate individualized treatment plans and advocate for their needs, given the absence of objective markers of disease progression. Empowerment facilitates shared decision-making and enables patients to communicate their unique experiences and management goals effectively. This paper provides a comprehensive overview of the dimensions and strategies associated with patient empowerment, its definition and the facilitators that are necessary, emphasizing its critical importance and relevance in Parkinson’s management. At the end of this review is a personal perspective as one of the authors is a person with lived experience.

Publisher

IOS Press

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