Staying hidden: The burden of stigma in PD

Abstract

Background: Despite the myriad motor and non-motor challenges associated with Parkinson's disease (PD) diagnosis, the hidden issue of stigma may be among the most influential factors negatively affecting quality of life. A number of qualitative studies have been published assessing various aspects of stigma in PD, and quantitative studies assert that most people with PD experience stigma during the course of their disease. Stigma is associated with poorer mental and physical health, poorer quality of life, decreased levels of hope, self-esteem and self-efficacy. The resulting stigma can lead to social anxiety and isolation, reluctance to seek medical care, loneliness, depression and anxiety. Therefore, understanding what stigma is, where it comes from, and how it affects people living with PD may offer clinicians and care partners tools to help mitigate the negative effects.

Focus: Over the past few decades, we have seen a move away from simply focusing on the effects of a disease (medical model) toward a holistic biopsychosocial approach that considers the role of environmental factors (stigma) when assessing overall well-being. We review some proactive practical suggestions to help people living with PD effectively combat the negative effects of stigma.

Conclusion: The additional hidden burden of stigma from PD affects quality of life. Having a better understanding of the role of stigma and its impact may allow clinicians to provide proactive care and greater empathy for those living with the challenges of this disease.

Keywords: Parkinson disease; Quality of life; Stigma; Well-being.