SEARCH

SEARCH BY CITATION

Keywords:

  • Qualitative;
  • chronic illness;
  • culture;
  • family

Abstract

Purpose

To discuss the visible and invisible stigma shared by seven men and seven women with Parkinson's disease (PD), a chronic, progressive, neurodegenerative disorder characterized by overt physical and covert psychological manifestations.

Data sources

An ethnographic approach using interview data, participant observations, and fieldwork was used. Field data were generated from a 2-year exposure to two PD support groups in east Texas. The question “what does it mean to you to have Parkinson's disease"? illuminated the experience of everyday life and the existential meaning of what it means to live with this disease.

Conclusions

The invisible stigma was that of a changing self, a self with PD, a form of disability, which attested to the stigma and mounting isolation. Feelings of isolation were exacerbated by both the stigmatization associated with being different, coupled with the realization that life would never be the same. Facial masking was identified as one of the visible features that were commonly reported by all participants.

Implications for practice

Healthcare professionals can be more attuned to the visible and invisible manifestations of PD that are associated with stigma through the incorporation of a holistic assessment to identify perceived stigma in persons living with the disease.