Lina Song, Xinbo Sun, Chengxia Li, Bing Li, Lijie Jing and Xuebing Jing*
Zibo Central Hospital, Zibo, China
Edited by
Paul Greenman, University of Quebec in Outaouais, Canada
Reviewed by
Venusia Covelli, University of eCampus, Italy
Massimo Tusconi, University of Cagliari, Italy
Isa Multazam Noor, YARSI University, Indonesia
*Correspondence
Xuebing Jing, jingxuebing@163.com
Received 22 February 2025
Accepted 29 May 2025
Published 18 June 2025
Citation
Song L, Sun X, Li C, Li B, Jing L and Jing X (2025) Stigma experience and coping strategies in stroke survivors: a qualitative study. Front. Psychol. 16:1581639. doi: 10.3389/fpsyg.2025.1581639
Aim: To investigate the true experiences of stigma and changes in stroke survivors and explore how they manage their symptoms.
Background:
Stroke is a serious disease that threatens human health with increasing mortality and disability rates. Declining self-care ability and excessive external dependence can easily lead to stigma. However, there is a lack of studies on real stigma experiences and coping styles among stroke survivors.
Design: A descriptive qualitative study.
Methods:
Fourteen participants were recruited across inpatient stroke settings in China. Semi-structured face-to-face interviews were conducted with participants to collect data. Audio-recorded data were transcribed. The data were analyzed using the seven-step Colaizzi method for phenomenological analysis, adhering to the principles of Phenomenological research methodology. The study adheres to SRQR EQUATOR checklist.
Findings:
Fourteen semi-structured interviews were conducted, revealing three main themes and ten sub-themes: (1) Non-adaptive emotion regulation in response to stigma, including sub-themes of remorse, shame, sadness, perceived disaster, depression, and reduced self-worth; (2) Adaptive emotion regulation in response to stigma, including positive reappraisal, positive adjustment, acceptance, and support systems; (3) Origins of stigma, including sources such as relatives, friends, oneself, and medical staff.
Conclusion:
The findings have the potential to inform the development and implementation of strategies to reduce the experience of stigma in early-stage clinical settings. Medical professionals must prioritize the comprehensive examination of genuine instances of stigma encountered by stroke survivors. Timely identification of stigma is imperative to mitigate the risk of patients adopting inaccurate beliefs and maladaptive coping mechanisms post-stroke. Strategies aimed at diminishing stigma should consider personal, familial, policy-related, societal, institutional, and environmental dimensions.
Keywords
stroke; stigma; cognitive regulation; nursing; qualitative study
1 Introduction
In China, cerebrovascular disease, recognized as a major health threat, has garnered significant attention from the Chinese government. Since the onset of the 21st century, driven by the proactive initiatives of the Stroke Prevention and Control Engineering Committee, notable advancements have been made within China’s healthcare system in the realm of stroke prevention and treatment (Chao et al., 2019). Yet, the vast demographic base in China has presented obstacles to the advancement of these efforts. Despite the ongoing progress in medical capabilities within China, the incidence and mortality rates of stroke patients continue to escalate. According to the China Stroke Prevention and Treatment Report (2023), the number of stroke patients aged 40 and above in China has reached 12.42 million, with patients skewing towards younger age groups. On average, an individual experiences either an initial or recurrent stroke every 10 s, with one person succumbing to stroke-related complications every 28 s. Among survivors, approximately 75% suffer from sequelae, with 40% experiencing severe disability.
Stroke patients are often accompanied by symptoms of nerve damage such as hemiplegia and aphasia, among which hemiplegia is the main manifestation of stroke sequelae (Chen et al., 2022). With the establishment and improvement of dedicated stroke care pathways across various regions, coupled with advancements in emergency thrombolysis and thrombectomy technologies, the mortality rate associated with stroke has seen a decline. Nevertheless, the rate of disability remains notably high (Mohamad et al., 2023). The annual disability rate of new stroke patients in China has reached as high as 75%, among which 70 to 80% still suffer from limb dysfunction after treatment (Chen et al., 2022). Post-stroke dysfunction often leads to enduring physical, psychological, cognitive, and social impairments, marked by resistance to treatment and unfavorable prognoses. Movement, language, swallowing, and emotional disruptions escalate patients’ reliance on external assistance or aids, fostering a sense of stigma (Liu et al., 2023), and predisposing them to post-stroke depression (PSD) (Di et al., 2019) and Poststroke emotionalism (PSE) (Broomfield et al., 2022), thereby heightening mortality risks. Therefore, it is imperative to focus on patients’ encounters with stigma and implement health behavior interventions accordingly. This approach holds profound importance in managing their emotional well-being and enhancing their overall prognosis.
The word “stigma,” originating from Greek and translated into English as “shame and stigma,” denotes a trait deemed immoral and detrimental to an individual’s reputation, serving as a symbolic imposition by external societal forces. Sociologist Goffman (1963) expressed the belief that stigma refers to the shame experience caused by a patient’s own performance or the negative and distorted views and attitudes of others towards a specific characteristic of the patient after the disease, which leads to the reduction of the patient’s reputation or status in the eyes of others. Link and Phelan (2001) stated that stigma was not only caused by individuals, but also by socialization. Stigma is commonly associated with specific negative or undesirable traits or characteristics, leading to the labeling of individuals with insult and contempt when possessing these attributes. Such “labels” instill attitudes of guilt, shame, and disgust in individuals, fostering experiences of discrimination, social isolation, personal harm, and a decline in social standing. According to WHO, stigma is a “hidden burden of disease,” including perception, expectation, internalization and experience of stigma. Research on stigma and neurological diseases has focused on patients with epilepsy and mental disorders (Sarfo et al., 2017), and there is a scarcity of studies on stroke patients. Compared with AIDS and cancer patients, the external characteristics of stroke patients are more obvious, and the level of stigma is also different. Disablism’ is thus added to the likes of sexism, racism, ageism and homophobia as a form of exclusionary and oppressive practice. Scambler (2009) defined stigma as an ontological deficit, reflecting infringements against norms of shame, discrimination by others on grounds of being imperfect.
Stigma can seriously affect the social function of stroke patients, precipitating negative psychological states, particularly evident in early-stage stroke patients. This may result in delays in the rehabilitation process and diminish the overall quality of life. Studies have shown that 50% of stroke patients within 1 year after the onset experience stigma problems (Sjögren, 1982). The emergence of stigma hampers the motivation and functional recovery of stroke patients during the rehabilitation process, dampening patients’ enthusiasm to engage in social
improvement of dedicated stroke care pathways across various regions, coupled with advancements in emergency thrombolysis and thrombectomy technologies, the mortality rate associated with stroke has seen a decline. Nevertheless, the rate of disability remains notably high (Mohamad et al., 2023). The annual disability rate of new stroke patients in China has reached as high as 75%, among which 70 to 80% still suffer from limb dysfunction after treatment (Chen et al., 2022). Post-stroke dysfunction often leads to enduring physical, psychological, cognitive, and social impairments, marked by resistance to treatment and unfavorable prognoses. Movement, language, swallowing, and emotional disruptions escalate patients’ reliance on external assistance or aids, fostering a sense of stigma (Liu et al., 2023), and predisposing them to post-stroke depression (PSD) (Di et al., 2019) and Poststroke emotionalism (PSE) (Broomfield et al., 2022), thereby heightening mortality risks. Therefore, it is imperative to focus on patients’ encounters with stigma and implement health behavior interventions accordingly. This approach holds profound importance in managing their emotional well-being and enhancing their overall prognosis.The word “stigma,” originating from Greek and translated into English as “shame and stigma,” denotes a trait deemed immoral and detrimental to an individual’s reputation, serving as a symbolic imposition by external societal forces. Sociologist Goffman (1963) expressed the belief that stigma refers to the shame experience caused by a patient’s own performance or the negative and distorted views and attitudes of others towards a specific characteristic of the patient after the disease, which leads to the reduction of the patient’s reputation or status in the eyes of others. Link and Phelan (2001) stated that stigma was not only caused by individuals, but also by socialization. Stigma is commonly associated with specific negative or undesirable traits or characteristics, leading to the labeling of individuals with insult and contempt when possessing these attributes. Such “labels” instill attitudes of guilt, shame, and disgust in individuals, fostering experiences of discrimination, social isolation, personal harm, and a decline in social standing. According to WHO, stigma is a “hidden burden of disease,” including perception, expectation, internalization and experience of stigma. Research on stigma and neurological diseases has focused on patients with epilepsy and mental disorders (Sarfo et al., 2017), and there is a scarcity of studies on stroke patients. Compared with AIDS and cancer patients, the external characteristics of stroke patients are more obvious, and the level of stigma is also different. Disablism’ is thus added to the likes of sexism, racism, ageism and homophobia as a form of exclusionary and oppressive practice. Scambler (2009) defined stigma as an ontological deficit, reflecting infringements against norms of shame, discrimination by others on grounds of being imperfect.
Stigma can seriously affect the social function of stroke patients, precipitating negative psychological states, particularly evident in early-stage stroke patients. This may result in delays in the rehabilitation process and diminish the overall quality of life. Studies have shown that 50% of stroke patients within 1 year after the onset experience stigma problems (Sjögren, 1982). The emergence of stigma hampers the motivation and functional recovery of stroke patients during the rehabilitation process, dampening patients’ enthusiasm to engage in social activities. Stigma could potentially contribute to the development of depression following a stroke (Zhu et al., 2019). Stroke patients often struggle to cope with substantial changes brought about by the illness and are at increased risk of experiencing stigma following a cerebral infarction (Mohamad et al., 2023). The neurological impairments that persist after a stroke, combined with societal attitudes towards individuals with disabilities, frequently evoke negative emotions in patients. This can lead to self-stigmatization, where patients internalize negative societal perceptions, resulting in changes in cognition, behavior, and mood (Wang et al., 2019). Emotion-regulation strategies across psychopathology (Aldao et al., 2010) explains that people can flexibly adopt various emotional regulation strategies according to different environments to achieve the best emotional regulation effect. Cognitive emotion regulation can explain some mental symptoms, and has a certain effect on empathy disorder and stigma. Cserép et al. (2022) found that people with higher stigma were more likely to use negative emotional regulation strategies. As such, it is crucial to clinically address strategies for effectively reducing the occurrence of stigma following a stroke. The aim of the present study was to interview stroke survivors to gain insight into their firsthand experiences and subsequent changes, thereby exploring approaches to managing their symptoms.
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