When appearances are misleading: Psychosocial consequences of facial masking in Parkinson’s disease
Wootton, A. (2021). When appearances are misleading: Psychosocial consequences of facial masking in Parkinson’s disease (Thesis, Doctor of Philosophy (PhD)). The University of Waikato, Hamilton, New Zealand. Retrieved from https://hdl.handle.net/10289/14529
Permanent Research Commons link: https://hdl.handle.net/10289/14529
Facial masking, the loss of expressive facial mobility in Parkinson’s disease, has the potential to impact communication, emotion perception, subjective wellbeing, and social relationship functioning. This unique symptom has been studied in the context of the healthcare and casual interactions, but little is known about how it affects people who have Parkinson’s in their family interactions. Since no cure for Parkinson’s disease presently exists, lessening the impact of the condition is an important aspect of Parkinson’s management. However, research has been missing the voices of those who experience facial masking. This gap underscores the need to deepen our understanding of this symptom and the difficulties it may create. Thus, this research project sought to understand experiences and challenges related to facial masking in Parkinson’s, to transform those insights to targeted clinical tools, and to investigate the significance of masking in the psychosocial wellbeing of both people with Parkinson’s and their partners or family members. In Study 1, in-depth personal accounts were collected of nine people who had Parkinson’s and their spouses or partners were separately interviewed about their experiences of facial masking. The study aimed to explore the common experiences and challenges related to facial masking, on an individual level and within close relationships. Facial masking was often falsely perceived by partners as a negative affect and wrongly interpreted to mean a lack of care or interest. The loss of expression and its misinterpretation was described as a barrier to emotional connection by some participants. Loss of the ability to physically embody one’s thoughts and feelings was unsettling and distressing for both people with Parkinson’s and their partners. The interviews revealed most participants had low awareness that this symptom was an aspect of Parkinson’s, with nearly all indicating a wish for greater education and support around this symptom. Study 2 involved the development and validation of two separate questionnaires that evaluated the socioemotional consequences of facial masking, one for individuals who have Parkinson’s and the other for their partner, spouse, or other family member. Questionnaire items were derived from the findings of Study 1 and a review of relevant concepts in existing literature. Psychometric properties of the questionnaires were statistically evaluated among a community sample of 80 people who had Parkinson’s and 58 of their significant others. This included an item-level assessment, an exploratory investigation of the factor structure, an evaluation of the internal and test-retest reliability, and evaluation of the construct validity of the questionnaires. Results indicated the questionnaires had good reliability and initial evidence of validity. Modified (revised) versions of the questionnaires were produced based on the psychometric findings of Study 2. Study 3 described the functioning of the participants in the psychometric study above. This study investigated the relationship between perceptions of facial masking and various psychosocial outcomes, and a study-specific measure of the impact of facial masking in Parkinson’s (developed in Study 2). Ratings of facial masking were made by self-report and significant other reports, along with healthcare professional and researcher ratings based on a videotaped conversation. Healthcare professional ratings of FM were not found to be significantly related to self/significant other ratings of facial masking severity. Overall, having more negative consequences of FM was linked to poorer psychosocial outcomes, but suggested people with Parkinson’s and their significant others may be affected in different ways. Findings of this programme of research add to what is known about the consequences of facial masking in casual and healthcare provider social interactions, by examining this symptom from the perspective of those living with facial masking in Parkinson’s. The results build upon and are generally consistent with the small amount of existing evidence showing that facial masking can have a detrimental impact on subjective wellbeing. The main implication of this research is that facial masking is a topic that warrants greater clinical attention and communication. The findings also call attention to the fact that facial masking is a common feature of Parkinson’s, yet in New Zealand, people with the condition and their families seem to lack knowledge about this symptom and desire greater education and support.
The University of Waikato
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