Self-Stigma in Parkinson's Disease: A 3-Year Prospective Cohort Study

Lin, Junyu; Ou, Ruwei; Wei, Qianqian; Cao, Bei; Li, Chunyu; Hou, Yanbing; Zhang, Lingyu; Liu, Kuncheng; Shang, Huifang

doi:10.3389/fnagi.2022.790897

Cited by 6 publications

(3 citation statements)

References 40 publications

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“…There are studies that speak of rejection at work and stigmatization of patients diagnosed with a rare disease. Regarding the family environment, and coinciding with the studies of Lin et al [28], levels of dependence are observed that increase as the disease progresses. It is necessary to highlight the role of the main caregiver in the family environment, who should be taken into account as an essential character in the development of the disease, but should not be forgotten as an independent patient.…”

Section: Discussionsupporting

confidence: 81%

A Qualitative Study Exploring the Experiences and Perceptions of Patients with Hemophilia Regarding Their Health-Related Well-Being, in Salamanca

Ramos-Petersen,

Rodríguez-Sánchez,

Cortés-Martín

et al. 2023

JCM

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Hemophilia is a chronic, congenital/hereditary and X-linked disease, characterized by an insufficiency of factors VIII or IX, which are necessary for blood clotting. Those affected by hemophilia often suffer from particular psychosocial problems, both in the acceptance, coping, treatment and self-management of their disease and in their family and social relationships, which are often mediated by these circumstances. The aim of this study was to explore the experiences of people with hemophilia or their family members, of in a specific region of Spain, regarding the impact of having hemophilia. Structured interviews were conducted and developed, using the studies of the World Federation of Hemophilia and Osorio-Guzmán et al. as a guide, as well as a literature review of qualitative work on hemophilia. Data were analyzed using a six-step thematic analysis. A total of 34 interviews were thematically analyzed. The results showed that three key themes emerged from the data: (1) the daily impact of having hemophilia, (2) uncertainty about the disease, (3) the role of associations and (4) support from institutions. The results make it clear that the disease has a major impact on their lives (work, family, leisure and personal environment). The main conclusion is that hemophilia has a negative impact on the daily lives of patients, families and caregivers.

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Section: Discussionsupporting

confidence: 81%

A Qualitative Study Exploring the Experiences and Perceptions of Patients with Hemophilia Regarding Their Health-Related Well-Being, in Salamanca

Ramos-Petersen,

Rodríguez-Sánchez,

Cortés-Martín

et al. 2023

JCM

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“…These include components of the Parkinson’s Disease Questionnaire (PDQ-39) and Parkinson’s Disease Quality of Life Questionnaire (PDQL) [ 38 ]. For example, in China, Lin et al investigated the evolution of self-stigma in early-stage Parkinson’s (using PDQ-39), identifying a decrease in self-stigma with increasing disease progression [ 39 ]. The Stigma Impact Scale and Stigma Experience Scale have also been adapted to identify and measure perceived stigma in Parkinson’s (see Burgener and Berger [ 40 ]).…”

Section: Introductionmentioning

confidence: 99%

The lived experience of stigma and parkinson’s disease in Kenya: a public health challenge

Fothergill‐Misbah

2023

BMC Public Health

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Background As a disease characterised by non-motor and very visible motor symptoms, Parkinson’s disease has been associated with multiple forms of stigma, while awareness about the disease globally remains low. The experience of stigma relating to Parkinson’s disease from high-income nations is well-documented, while less is known about low- and middle-income countries (LMICs). Literature on stigma and disease from Africa and the Global South has described the added complexities people face resulting from structural violence, as well as perceptions about symptoms and disease associated with supernatural beliefs, which can have significant implications for access to healthcare and support. Stigma is a recognised barrier to health-seeking behaviour and a social determinant of population health. Methods This study draws on qualitative data collected as part of a wider ethnographic study to explore the lived experience of Parkinson’s disease in Kenya. Participants include 55 people diagnosed with Parkinson’s and 23 caregivers. The paper draws on the Health Stigma and Discrimination Framework as a tool to understand stigma as a process. Results Data from interviews identified the drivers and facilitators of stigma, including poor awareness of Parkinson’s, lack of clinical capacity, supernatural beliefs, stereotypes, fear of contagion and blame. Participants reported their lived realities of stigma, and experiences of stigma practices, which had significant negative health and social outcomes, including social isolation and difficulty accessing treatment. Ultimately, stigma had a negative and corrosive effect on the health and wellbeing of patients. Conclusion This paper highlights the interplay of structural constraints and the negative consequences of stigma experienced by people living with Parkinson’s in Kenya. The deep understanding of stigma made possible through this ethnographic research leads us to see stigma as a process, something that is embodied and enacted. Targeted and nuanced ways of tackling stigma are suggested, including educational and awareness campaigns, training, and the development of support groups. Importantly, the paper shows that awareness of, and advocacy for the recognition of, Parkinson’s globally needs to improve. This recommendation is in line with the World Health Organization’s Technical Brief on Parkinson disease, which responds to the growing public health challenge posed by Parkinson’s.

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“…Stigma is a unique feature in the QoL of PwP, as it questions negative interactions between the patient and society including labeling, discrimination, and loss of status [11]. This is a potentially critical issue in the daily life of PwP, as PD is a chronic progressive disease, and stigmatization of PwP in society may lead to long-term and increasing consequences, such as treatment noncompliance, hopelessness, social isolation, or even suicide [12][13][14]. However, despite these concerns, stigma has been relatively under-investigated in PD [15].…”

Section: Introductionmentioning

confidence: 99%

Cross-Cultural Differences in Stigma Associated with Parkinson’s Disease: A Systematic Review

Karacan,

Kibrit,

Yekedüz

et al. 2023

JPD

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Background: Stigma is an important social attitude affecting the quality of life (QoL) of people with Parkinson’s disease (PwP, PD) as individuals within society. Objective: This systematic review aimed to 1) identify the factors associated with stigma in PD and 2) demonstrate culture-based diversity in the stigmatization of PwP. We also reported data from the Turkish PwP, which is an underrepresented population. Methods: Following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement, a literature search of the PubMed/Medline electronic database was performed covering the last 26 years. Articles on self-perceived stigma in PD with a sample size > 20 and quantitative results were included. Data were extracted by independent reviewers. Results: After screening 163 articles, 57 were eligible for review, most of which were from Europe or Asia. Only two studies have been conducted in South America. No study from Africa was found. Among the 61 factors associated with stigma, disease duration, sex, and age were most frequently studied. A comparison of the investigated factors across the world showed that, while the effect of motor impairment or treatment on stigma seems to be culture-free, the impact of sex, education, marriage, employment, cognitive impairment, and anxiety on stigma may depend on culture. Conclusion: The majority of the world’s PD population is underrepresented or unrepresented, and culture may influence the perception of stigma in PwP. More diverse data are urgently needed to understand and relieve the challenges of PwP within their society.

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Self-Stigma in Parkinson's Disease: A 3-Year Prospective Cohort Study

Cited by 6 publications

References 40 publications

A Qualitative Study Exploring the Experiences and Perceptions of Patients with Hemophilia Regarding Their Health-Related Well-Being, in Salamanca

A Qualitative Study Exploring the Experiences and Perceptions of Patients with Hemophilia Regarding Their Health-Related Well-Being, in Salamanca

The lived experience of stigma and parkinson’s disease in Kenya: a public health challenge

Cross-Cultural Differences in Stigma Associated with Parkinson’s Disease: A Systematic Review

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