School of Nursing, The University of Texas at Tyler, Tyler, TX, USA
School of Nursing, The University of Texas at Tyler, Tyler, TX, USA.
Res Theory Nurs Pract. 2024 Aug 21;38(3):321-338. doi: 10.1891/RTNP-2024-0015.
People with Parkinson's disease (PD) are at risk for stigma. The stigma theory suggests four stigma types: public stigma, self-stigma, stigma by association, and structural stigma. The purposes of this study were to understand how people with PD and caregivers perceived and experienced stigma, review the literature and scan social media for evidence of stigma and PD, and examine the interrelationships between stigma types. This was a multicase, qualitative, descriptive research study. Cases included interviews with people with PD and caregivers, a literature review, and a scan of social media posts for evidence of stigma. Literature and social media were searched; seven people with PD and five caregivers completed the interviews. The stigma theory guided the analysis. Methods to ensure trustworthiness were employed. Public stigma, self-stigma, stigma by association, and structural stigma were evident in the literature and described by caregivers. Public stigma, self-stigma, and structural stigma were described by people with PD. Public stigma was represented in social media posts. Interrelationships between public and self-stigma, public stigma and stigma by association, and self-stigma and structural stigma were identified. All stigma types were experienced and negatively affected people with PD and caregivers. Lack of knowledge and awareness caused stigma and should be addressed on multiple levels. Stigma experienced by people with PD was a global phenomenon; therefore, nurses internationally must be aware of their perceptions of and behavior toward people with PD. Engaging the public with people with PD will demystify PD and reduce stigma. Greater understanding of structural stigma and diverse populations and public perceptions is needed.
帕金森病(PD)患者面临污名化的风险。污名化理论提出了四种污名类型:公众污名、自我污名、关联污名和结构性污名。本研究的目的是了解 PD 患者和照护者如何感知和经历污名,回顾文献并扫描社交媒体上 PD 污名的证据,以及检查污名类型之间的相互关系。这是一项多案例、定性、描述性研究。案例包括对 PD 患者和照护者的访谈、文献回顾以及社交媒体帖子中污名证据的扫描。对文献和社交媒体进行了搜索;7 名 PD 患者和 5 名照护者完成了访谈。污名化理论指导了分析。采用了确保可信度的方法。文献和照护者描述了公众污名、自我污名、关联污名和结构性污名。PD 患者描述了公众污名、自我污名和结构性污名。社交媒体帖子中出现了公众污名。确定了公众污名和自我污名、公众污名和关联污名以及自我污名和结构性污名之间的相互关系。所有污名类型都被 PD 患者和照护者体验到,并对他们产生了负面影响。缺乏知识和意识导致了污名化,应该在多个层面上加以解决。PD 患者经历的污名化是一个全球性现象;因此,国际护士必须意识到他们对 PD 患者的看法和行为。让公众与 PD 患者接触将使 PD 患者的污名化问题变得清晰,并减少污名化。需要更多地了解结构性污名和不同人群以及公众的看法。