The Stigma Experience Across Chronic Conditions

Aim.  The aim of this presentation is to compare and contrast findings on stigma from ethnographic studies on persons with  Parkinson’s Disease, burns, chronic pain, and a vascular access for hemodialysis. 

 Background:  The social process of stigma was described in Goffman’s (1963) classic work as a categorization and generalization that marks the individual as deviant and discrediting. Despite Parson’s (1958) classic work in the sociology of sick roles in which the deviancy of illness is differentiated as non-volitional, many people with chronic conditions still experience social stigmatization.  Those who share a common illness can be considered cultural subgroups, with beliefs and values influencing their health-related behaviors toward the common illness.  Through the use of ethnographic research findings, providers can enhance their own cultural competence related to specific illnesses.

 Method.  Ethnographic research approaches allow for an understanding of the experience of navigating in the larger society from the perspective of those who share a common illness. The studies presented employed focused ethnographic approaches using interview data, participant observations, and fieldwork.

 Findings. Stigmatizing situations may reflect both invisible and invisible marking. Facial masking and visible scarring are examples of visible stigma, and the attitude that pain medication is socially unacceptable is an example of the invisible stigma.  The responses to stigmatization may include attempts to normalize and internalization. Stigmatizing experiences cause stress for participants, yet are seldom discussed with providers.

 Conclusions. Ethnographic research, tailored to increase understanding about those sharing a cultural subgroup of a common medical condition, can enhance provider cultural competence. Use of these findings allow focused guidance and coaching related to stigmatizing experiences.