Objective: To present results about stigma in PPD from a Parkinson’s Workshop. These are preliminary results in the path to address the main project question about the communication in PPD and their body as instrument of communication.

Background: Stigma is a personal complex experience in which the manifestations of one´s disease and the social environment interact, and which affects social identity and the sense of self. It is not infrequent that people with chronic and neurodegenerative diseases suffer stigma. Their loss of body abilities and beliefs of other’s judgements about them affect communication and quality of life.

Methods: Participants 15 PPD from a Parkinson’s Workshop (Hoehn & Yahr [HY] 2.53(±1.18), years from diagnosis [YD] 10.93(±6.69), diary L-dopa dose [LD] 690.83(±433.69) mg, age 70.4(±6.85)), who signed an informed consent. Instrument Fife and Wright (2000) stigma scale (SS) translated ad hoc to Spanish. This is a self-completion Likert-type scale from 1= strongly disagree to 4= strongly agree and an option (0) to indicate that the item does not apply to the respondent. The original 24 SS items represents two dimensions of the stigma experience: rejectment experience and stigma (social rejection [SR] and financial insecurity [FI]) and socio-psychological feeling related to stigma (internalized shame [IS] and social isolation [SI]). Burgener & Berger (2008) probed its validity and reliability. Analysis Descriptive analysis and ANOVA one factor (SPSS 15).

Results: The means and standard deviations were: SR 1.59(±.54), FI 1.6(±.7), IS 1.72(±.53), and SI 2.53 (±.69). The variables dependence from HY stages showed no significance (SR p=.92, FI p=.7, IS p=.78, and SI p=.39). Regarding their relation with YD, the only significant difference was with relation to SI (p=.04) and the rest of the variables showed no significance (SR p=.28, FI p=.18, and IS p=.57). The dependence of LD was significant only for SR (p=.02) (FI p=.33, IS p=.5, and SI p=.23). Finally, the relation with age showed no significance (SR p=.39, FI p=.71, IS p=.5, and SI p=.29).

Conclusions: We observed that PPD are aware of their symptoms and loss of ability as well as the responses of others, and that social isolation can be related with length of disease. Their social communication seems to be affected by their perception of their disease but the rest of the stigma dimensions are relatively low experienced. This study has limited generalization and further qualitative enquiries will complement it.

References: Burgener SC, Berger B. Measuring perceived stigma in persons with progressive neurological disease: Alzheimer’s dementia and Parkinson’s disease. Dementia 2008, 7(1):31-53. doi: 10.1177/1471301207085366. Fife BL, Wright ER. The dimensionality of stigma: A comparison of its impact on the self of persons with HIV/AIDS and cancer. Journal of Health and Social Behavior 2000, 41(1):50-67. doi: 10.2307/2676360.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/stigma-and-communication-in-people-with-parkinsons-disease-ppd/