TY - JOUR
T1 - Determinants of Self-Stigma in People with Parkinson's Disease
T2 - A Mixed Methods Scoping Review
AU - Hanff, Anne Marie
AU - Leist, Anja K.
AU - Fritz, Joëlle V.
AU - Pauly, Claire
AU - Krüger, Rejko
AU - Halek, Margareta
N1 - Funding Information:
This work was supported by grants from the Luxembourg National Research Fund (FNR) within the National Centre of Excellence in Research on Parkinson?s disease [NCERPD(FNR/NCER13/BM/11264123)]. RK has received research grants from Fonds National de Recherche de Luxembourg (FNR) as Coordinator of the National Centre for Excellence in Research on Parkinson?s disease (NCER-PD) and within the PEARL Excellence Programme (FNR/P13/6682797/Kr?uger), the Michael J. Fox Foundation (ID: 1480), and the European Union?s Horizon 2020 research and innovation program (WIDESPREAD; CENTRE-PD; grant agreement no. 692320).
Publisher Copyright:
© 2022 - The authors. Published by IOS Press.
PY - 2022/2/15
Y1 - 2022/2/15
N2 - Background: Self-stigma in people with Parkinson's disease (PD) can substantially impact quality of life and possibilities for social participation. An integrative analysis of determinants of self-stigma has been lacking. Objective: We sought to explore which complementary insights from qualitative and quantitative studies, as well as from expert consultation, could be gained. Methods: An established mixed methods study design was employed to first conduct a mixed methods scoping review of published qualitative and quantitative literature, and then consult with experts to arrive at an exhaustive list of determinants of self-stigma after a thematic synthesis. Results: A total of 87 unique determinants of self-stigma were identified. Quantitative studies and expert consultations mainly identified personal determinants of people with self-stigma (e.g., age, anxiety, or apathy). In contrast, qualitative studies identified social situations associated with self-stigma (e.g., joint meals of people with typical PD with others). Notably, self-stigma of people with PD was found to be particularly salient in unfamiliar places, at the working place or in contact with people without PD. Across methods, cognitive impairment, tremor, and abnormal walk and unsteady gait, respectively, were associated with self-stigma. Conclusion: The mixed method study design yielded complementary insights, but also factors commonly associated with self-stigma across methods. Future prioritization exercises may gain further insights into self-stigma of people with PD. Facilitating social encounters by both addressing needs of affected people and raising knowledge and public awareness may improve quality of life in people with PD.
AB - Background: Self-stigma in people with Parkinson's disease (PD) can substantially impact quality of life and possibilities for social participation. An integrative analysis of determinants of self-stigma has been lacking. Objective: We sought to explore which complementary insights from qualitative and quantitative studies, as well as from expert consultation, could be gained. Methods: An established mixed methods study design was employed to first conduct a mixed methods scoping review of published qualitative and quantitative literature, and then consult with experts to arrive at an exhaustive list of determinants of self-stigma after a thematic synthesis. Results: A total of 87 unique determinants of self-stigma were identified. Quantitative studies and expert consultations mainly identified personal determinants of people with self-stigma (e.g., age, anxiety, or apathy). In contrast, qualitative studies identified social situations associated with self-stigma (e.g., joint meals of people with typical PD with others). Notably, self-stigma of people with PD was found to be particularly salient in unfamiliar places, at the working place or in contact with people without PD. Across methods, cognitive impairment, tremor, and abnormal walk and unsteady gait, respectively, were associated with self-stigma. Conclusion: The mixed method study design yielded complementary insights, but also factors commonly associated with self-stigma across methods. Future prioritization exercises may gain further insights into self-stigma of people with PD. Facilitating social encounters by both addressing needs of affected people and raising knowledge and public awareness may improve quality of life in people with PD.
KW - disability and health
KW - international classification of functioning
KW - Parkinson's disease
KW - review
KW - shame
KW - social discrimination
KW - social stigma
UR - http://www.scopus.com/inward/record.url?scp=85125314331&partnerID=8YFLogxK
UR - https://pubmed.ncbi.nlm.nih.gov/34842199
U2 - 10.3233/JPD-212869
DO - 10.3233/JPD-212869
M3 - Review article
C2 - 34842199
AN - SCOPUS:85125314331
SN - 1877-7171
VL - 12
SP - 509
EP - 522
JO - Journal of Parkinson's Disease
JF - Journal of Parkinson's Disease
IS - 2
ER -