Embarrassment and Shame in People With Parkinson's Disease: A New Tool for Self-Assessment

Frontiers in Neurology

Gun-Marie Hariz¹  Carmen Rodriguez-Blazquez²  Pablo Martinez-Martin²  Maria João Forjaz²  Mariagrazia Di Marco³  Ines Debove⁴  Paul Krack⁴  Pierre R. Burkhard⁵  Maria Messe⁵  Vanessa Fleury⁵  Sabina Catalano Chiuvé⁵  Julio Angulo⁸ 

[1] 0Department of Clinical Science, Neuroscience, Umeå University, Umeå, Sweden;Center for Networked Biomedical Research in Neurodegenerative Diseases (CIBERNED), Carlos III Institute of Health, Madrid, Spain;Clinical Investigation Unit, Geneva University Hospitals, Geneva, Switzerland;Department of Neurology, Inselspital, University Hospital Bern, University of Bern, Bern, Switzerland;Division of Neurology, Geneva University Hospitals, Geneva, Switzerland;Faculty of Medicine, University of Geneva, Geneva, Switzerland;Member, Persons With Parkinson's Advisory Council, Parkinson Foundation, Miami, FL, United States;Member, Program Design Committee 2019 World Parkinson's Congress, World Parkinson's Coalition, New York, NY, United States;Morningview Place, Lake Oswego, OR, United States;National Centre of Epidemiology, Carlos III Institute of Health, REDISSEC, Madrid, Spain;

关键词: parkinson's disease;    shame;    embarrassment;    questionnaire;    non-motor symptoms;   

DOI  :  10.3389/fneur.2020.00779

来源: DOAJ

【 摘 要 】

Shame and embarrassment related to Parkinson's disease (PD) are rarely addressed in clinical practice nor studied in neuroscience research, partly because no specific tool exists to detect them in PD.Objective: To develop a self-applied assessment tool of shame and embarrassment specifically related to PD or its treatment, to promptly identify the presence and severity of these two emotions in PD.Methods: Identification and selection of relevant items were obtained from the collection of PD patients' opinions during support groups and interviews. Several further items were added following a literature review. Subsequently, a two-phase pilot study was performed for identification of ambiguous items and omissions, and to obtain preliminary data on acceptability, reliability, validity and relevance of the new scale (SPARK).Results: A total of 105 PD patients were enrolled in the study. Embarrassment was reported in 85% of patients, while shame was present in 26%. Fifteen percent of patients did not describe any shame or embarrassment. On average, the intensity of these two emotions was low with a marked floor effect in SPARK items and subscales. However, SPARK total score inter-individual variability was important (range 1–84 out of 99). Acceptability and quality of data were satisfactory with no floor or ceiling effects (2.9% each) or missing data. Internal consistency (Cronbach's alpha) was 0.94 for total score and 0.73–0.87 for subscales. The scale correlated ≥0.60 with instruments measuring related constructs. Content validity was satisfactory. SPARK total score strongly correlated with impaired health-related quality of life (rS = 0.81), the propensity to feel embarrassed or ashamed (rS = 0.68 and 0.66, respectively), and anxiety (rS = 0.72) and depression (rS = 0.63) levels. Moderate to high correlations were observed between SPARK total score and apathy (rS = 0.46) and a more pronounced personality trait directed toward harm avoidance (rS = 0.46). No significant differences in SPARK scores were found by sex, education level, PD duration, Hoehn and Yahr stages or PD phenotype.Conclusion: Preliminary analysis of psychometric properties suggests that SPARK could be an acceptable and reliable instrument for assessing shame and embarrassment in PD. SPARK could help healthcare professionals to identify and characterize PD-induced shame and embarrassment.

【 授权许可】

Unknown