NDLI: Exploring the stigma experienced by people affected by Parkinson’s disease: a systematic review

Content Provider	Springer Nature : BioMed Central
Author	Crooks, Sophie Mitchell, Gary Wynne, Lisa Carter, Gillian
Abstract	Background Stigma significantly impacts individuals with Parkinson’s disease (PD) and their caregivers, exacerbating social isolation, psychological distress, and reducing quality of life (QoL). Although considerable research has been conducted on PD’s clinical aspects, the social and emotional challenges, like stigma, remain underexplored. Addressing stigma is crucial for enhancing well-being, fostering inclusivity and improving access to care and support. The review aims to fill this knowledge gap by synthesising existing literature on PD stigma, examining its effects on individuals and families affected, and identifying areas where interventions could reduce stigma’s impact. Methods This systematic review was conducted following Joanna Briggs Institute guidance. Studies were identified through searches in six databases, relevant websites, and reference lists. Covidence was used for duplicate removal, screening, and data extraction. Thematic analysis identified key themes from qualitative data, while narrative synthesis integrated findings from qualitative and quantitative studies. The review protocol was registered on PROSPERO (CRD42023399343). Results This review included 22 studies published between 2002 and 2024, using both qualitative and quantitative methodologies. Five key themes emerged. The first highlighted stereotypes in PD, such as misconceptions about symptoms, age stereotyping, and supernatural beliefs. The second explored drivers and facilitators of stigma, identifying factors like duration since diagnosis, disease severity, lack of public education, and media representation. The third theme revealed stigma’s impact on mental health and well-being, exacerbating feelings of shame, embarrassment, and social isolation. The fourth, responses and consequences of stigma, detailed strategies employed by individuals with PD to manage stigma, including seeking social support and adopting coping mechanisms. The fifth theme, beyond stigma, explored positive aspects of living with PD, highlighting resilience, positive interactions, and advocacy efforts. Conclusion This systematic review underscores the significant impact of stigma on individuals with PD and their caregivers, manifesting as social isolation, diminished QoL, and psychological distress. Key drivers include public misconceptions, cultural biases, and limited awareness and addressing these challenges requires targeted interventions. Recommendations include education to dispel myths, public awareness campaigns and advocacy efforts to reduce stigma, enhance support, and improve QoL.
Related Links	https://bmcpublichealth.biomedcentral.com/counter/pdf/10.1186/s12889-024-21236-8.pdf
Ending Page	13
Page Count	13
Starting Page	1
File Format	HTM / HTML
ISSN	14712458
DOI	10.1186/s12889-024-21236-8
Journal	BMC Public Health
Issue Number	1
Volume Number	25
Language	English
Publisher	BioMed Central
Publisher Date	2025-01-03
Access Restriction	Open
Subject Keyword	Public Health Medicine Epidemiology Biostatistics Vaccine Environmental Health Parkinson’s disease Stigma Awareness Education Discrimination Public Shame Social stigma PD Medicine/Public Health
Content Type	Text
Resource Type	Article
Subject	Public Health, Environmental and Occupational Health
Journal Impact Factor	3.5/2023
5-Year Journal Impact Factor	3.9/2023

Sl.	Authority	Responsibilities	Communication Details
1	Ministry of Education (GoI), Department of Higher Education	Sanctioning Authority	https://www.education.gov.in/ict-initiatives
2	Indian Institute of Technology Kharagpur	Host Institute of the Project: The host institute of the project is responsible for providing infrastructure support and hosting the project	https://www.iitkgp.ac.in
3	National Digital Library of India Office, Indian Institute of Technology Kharagpur	The administrative and infrastructural headquarters of the project	Dr. B. Sutradhar bsutra@ndl.gov.in
4	Project PI / Joint PI	Principal Investigator and Joint Principal Investigators of the project	Dr. B. Sutradhar bsutra@ndl.gov.in Prof. Saswat Chakrabarti will be added soon
5	Website/Portal (Helpdesk)	Queries regarding NDLI and its services	support@ndl.gov.in
6	Contents and Copyright Issues	Queries related to content curation and copyright issues	content@ndl.gov.in
7	National Digital Library of India Club (NDLI Club)	Queries related to NDLI Club formation, support, user awareness program, seminar/symposium, collaboration, social media, promotion, and outreach	clubsupport@ndl.gov.in
8	Digital Preservation Centre (DPC)	Assistance with digitizing and archiving copyright-free printed books	dpc@ndl.gov.in
9	IDR Setup or Support	Queries related to establishment and support of Institutional Digital Repository (IDR) and IDR workshops	idr@ndl.gov.in

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