The Vicious Circle of Stigma among Maintenance Hemodialysis Patients: A Qualitative Study

Introduction

The incidence of ESKD, a severe chronic progressive disorder posing a significant threat to human health, has witnessed a sustained global rise.¹ Maintenance hemodialysis (MHD) is one of the primary therapeutic modalities sustaining the lives of ESKD patients; however, research indicates that the 5-year survival rate among patients undergoing MHD treatment is merely 40%.² These patients not only endure the physical suffering inherent to the disease but also confront a series of alterations arising from the treatment process, which collectively contribute to the emergence of psychological issues to varying degrees, inducing psychological distress³ and potentially precipitating suicidal ideation.⁴ Stigma, defined as the negative emotions such as shame, self-reproach, and guilt experienced by individuals due to their illness, often accompanied by a fear of social discrimination and self-devaluation,⁵ is a complex socio-psychological phenomenon prevalent among those with chronic illnesses.⁶ Due to the uniqueness of their treatment and societal stereotypes regarding ‘dialysis patients,’ patients on MHD frequently develop a strong sense of stigma in the contexts of self-identity and social interaction.⁷ Such emotions not only exacerbate their psychological stress, giving rise to issues like anxiety and depression, but may also interfere with their enthusiasm for treatment, willingness to engage in social interactions, and overall quality of life, and even lead to suicidal ideation.⁸ Although some existing studies⁹ have focused on the mental health problems of patients on MHD, discussions on their sense of stigma mostly remain at the quantitative level, emphasizing statistical analyses of the incidence of stigma and its related influencing factors.¹⁰ However, there is a lack of in-depth exploration into the real experiences, inner feelings, coping styles, and symptom manifestations of stigma that patients encounter in their daily lives. This study will adopt qualitative research methods to gain an in-depth understanding of the inner experiences of stigma among maintenance hemodialysis patients, aiming to provide a basis for clinical medical staff to formulate targeted psychological intervention strategies and lay a foundation for improving the psychological state, social adaptability, and quality of life of patients on MHD.

Materials and Methods

Purposive sampling was used to select patients on MHD who met the inclusion and exclusion criteria, with the sample size determined by theoretical saturation. Inclusion criteria were: (i) age between 18 and 80 years, (ii) on MHD, (iii) clear consciousness and ability to communicate and express normally, and (iv) voluntarily participation. Exclusion criteria were: (i) complicated with severe cardiovascular diseases, severe infections, tumors, or other major organ diseases, (ii) inability to communicate normally or having cognitive impairments, etc., (iii) a cardiac function score ≥ grade Ⅲ, or (iv) consent being withdrawn midway or refusal to participate.

Phenomenological theory, founded by Husserl,¹¹ is an influential philosophical trend and research method that focuses on in-depth exploration of human experiences and cognitive processes of phenomena, aiming to reveal the essence behind them. Within the scope of qualitative nursing research in China, phenomenological research methods have been widely applied, involving many different schools, among which descriptive phenomenology and interpretive phenomenology are the two most commonly used categories.¹² Interpretive phenomenology, further developed by Heidegger,¹³ places greater emphasis on understanding and interpreting phenomena, highlighting that human reality has a ‘situational nature’ and emphasizing that individual experiences are to a large extent influenced by their surrounding environment. Therefore, this study will adopt Heidegger’s interpretive phenomenology to guide the qualitative research on the stigma of maintenance hemodialysis patients.

A preliminary interview outline for this study was formulated through an extensive review of relevant academic literature and in-depth discussions within the research team. Guided by Kaufman’s principle that interview questions should be open-ended, the outline primarily consists of open-ended questions. To further optimize the interview content, two patients were selected as pre-interview subjects in the early stage to refine the outline. Based on feedback from these pre-interviews, the content of the outline was revised and improved, with precautions and skills for the formal interviews summarized during this process.

The interviews were conducted between August and October 2024. This study adopted face-to-face semi-structured interviews, which were conducted by researchers who had completed a 6-month qualitative research education program and received professional training. Prior to each interview, the researchers pre-arranged the location and time with the interviewees, explained the specific purpose and core content of the interview, and conducted the interview after obtaining their informed consent. The researchers solemnly promised to strictly protect the personal privacy of the interviewees, and the data obtained from the interviews would only be used for scientific research. In addition, before the start of the interview, the researchers also recorded the interviewees’ relevant basic information, such as age, sex, educational background, and marital status. Each interview was ensured to be conducted only between the researcher and the interviewee, and each interviewee participated in only one interview to avoid repeated interviews. The duration of each interview was controlled between 15 and 25 minutes, with an average of approximately 20 minutes per interview. After the interview, the researchers transcribed the recording into a written manuscript within 24 hours and numbered the data in the order of the interviews. During the data collection and analysis process, no new themes or sub-themes emerged when interviewing the 15^th participant. Therefore, this study ultimately selected the interview content of the first 14 research subjects as the analysis material.

Audio data were converted into text data after the interviews and imported into the Nvivo13.0 software for management and analysis. Colaizzi’s seven-step method¹⁴ was used for data analysis; specific examples related to this data processing and analysis process are seen in the Appendix.

To enhance the credibility of interview data and the rigor of the interview process, researchers adopted the following measures for quality control of the interviews: (i) Researchers, acting as ward nurses, interned in relevant departments and deeply participated in daily treatment to ensure the reliability of research content. They also compared and verified the interview data with observational content. (ii) During data collation, researchers strictly adhered to the principle of academic integrity, faithfully recorded and retained the information provided by interviewees, and avoided the impact of personal subjective understanding on the data. (iii) After the interviews, two members of the research team were responsible for independently coding, transcribing, and conducting in-depth analysis of the interview content. In case of coding discrepancies, collective discussions were held to make decisions, so as to ensure the accuracy and consistency of the data.

Results

This study considers the interview content of 14 patients (P1-P14) as the analysis object, and all interviewees are from the Hemodialysis Center of a tertiary hospital. The demographic characteristics of the interviewees have been shown in Table 1. During the data analysis, three themes with nine sub-themes were summarized, including the sources of stigma (social prejudice, family pressure, self-negation), the behavioral manifestations of stigma (concealing the illness, physical shame, self-isolation), and the coping experiences of stigma (dynamic adjustment of mentality, seeking comfort by oneself, unmet support needs). For detailed interview content, please see below.

Discussion

This study found that the stigma of MHD patients forms a vicious cycle of “external pressure - internal cognition - behavioral feedback.” External pressure triggers patients’ negative cognition, cognitive bias gives rise to specific behaviors, and the results of these behaviors in turn feedback and exacerbate the sense of stigma, thus forming a closed loop. Society generally has a wrong perception of “end-stage kidney disease,”¹⁵ equating it with “terminal illness” and even thinking it is contagious. This perception is directly transformed into behaviors such as discrimination and alienation, making patients feel alienated from society, and thus the sense of stigma emerges. On this basis, family pressure further strengthens patients’ internal cognition. By continuously transmitting negative evaluations, it promotes patients to move from passive acceptance to active recognition of these negative cognitions, and finally forms a psychological state of self-negation and generates a sense of stigma.¹⁶ Furthermore, patients will show behaviors of concealing their illness and self-isolation, which are not only passive evasion of social prejudice, but also active withdrawal due to the loss of social roles after illness. Because patients cannot continue their original life roles, they choose to alienate themselves from social interactions to avoid the sense of shame caused by the identity gap.¹⁷ In addition, when the obvious changes in patients’ bodies caused by treatment and the differences from ordinary people in public spaces are amplified, it will further exacerbate social withdrawal behaviors.¹⁸ These behavioral manifestations, in turn, strengthen patients’ self-negating cognition, ultimately aggravating the sense of stigma and allowing the vicious cycle to continue.

We found that the stigma of patients on MHD presents significant differential characteristics, which are reflected in dimensions such as disease course stages, social roles, and family support. Studies have shown that newly diagnosed patients often face a sudden collapse of their healthy identity, resulting in intense shock-related shame. The fear of their own pathological changes makes them tend to maintain social recognition by concealing their illness;¹⁹ in contrast, patients with a longer dialysis duration mostly exhibit adaptive distortion of shame. The long-term experience of being labeled by the disease gradually internalizes external discrimination into a rationalized reason for self-isolation.²⁰

Relevant research also points out that in terms of social roles, the stigma of middle-aged and young patients is more related to value deprivation. The weakening of social functions caused by the disease makes it difficult for them to maintain the value recognition brought by their original social roles;²¹ elderly patients, on the other hand, are more likely to feel a sense of being a burden due to changes in family functions, and the care needs caused by the disease are internalized into guilt towards the family.²²

The utilization of social support, to a certain extent, exacerbates the differentiation of stigma. In families with a sound support system, patients’ stigma is mostly directed at the external social environment;²³ while in families lacking support or with tense relationships, stigma is often superimposed with emotional harm from close relatives, forming more complex psychological trauma.²⁴

However, relevant studies have also pointed out that the stigma status of dialysis patients may also be affected by demographic factors,²⁵ disease-related factors,¹⁰ and psychological factors.²⁶ Therefore, future research should further explore the differences in stigma among patients in different dimensions, so as to better understand and intervene in the issue of stigma in dialysis patients.

MHD patients commonly experience stigma, often feeling shame or embarrassment and fearing discrimination, which impairs their mental health, social integration, and quality of life.²⁷ This stigma requires multidimensional interventions. Hospitals should provide health education to foster a positive mindsets for dialysis (to reduce stigma),²⁸ add sufficient beds, and set flexible dialysis schedules to offer more choices and maintain patients’ life enthusiasm;²⁹ patients can also self-adjust via psychological counseling,³⁰ mindfulness training,³¹ and peer support.³² Families should proactively learn about the disease and provide adequate support/care to address patients’ negative emotions and reduce psychological stress.²⁴ The government must promote chronic disease knowledge via social media, community campaigns, and primary/secondary school courses to correct cognitive biases, build an inclusive environment, and eliminate public discrimination that disrupts patients’ lives.²¹ Meanwhile, healthcare providers can use three approaches: (i) the 5A Nursing Model³³ (core process: Assessment-Advice-Agreement-Assistance-Follow-up): it uses standardized stigma scales to identify stigma causes, develops targeted suggestions, sets goals with patients, assists in resource integration and training, and conducts regular follow-ups to adjust plans; studies show post-intervention, the intervention group’s average stigma score was 10 points lower than the control group (statistically significant); (ii) the HEART Five-Step Communication Model:³⁴ it enhances doctor-patient communication by listening to patients’ stigma-related needs, empathizing with their emotions, inquiring about their troubles, responding with solutions, and tracking progress; (iii) Narrative Therapy:³⁵ it guides patients to reconstruct disease narratives, encourages them to share experiences, helps identify positive elements, and turns negative narratives into positive cognitions for daily use (a study showed significant stigma reduction in patients 4 weeks post-intervention). In summary, coordinated multidimensional interventions effectively alleviate MHD patients’ physical/mental burden, reduce stigma, improve social integration and quality of life, and help patients regain a healthy, positive lifestyle.

This study found that MHD patients face a stigma-induced vicious cycle, shown through behaviors like physical concealment, condition hiding, and self-isolation. This stigma worsens emotional distress, damages family relationships and social integration, leaving patients trapped. Prior to the study, preliminary assumptions were made based on clinical observations of hemodialysis characteristics and a literature review. The characteristics include the need for body exposure during treatment and long-term reliance on medical equipment. The assumptions include that patients might encounter social prejudice related to a misunderstanding of the disease and develop perceptions of self-worth negation. Study results align with some of these assumptions. Additionally, qualitative analysis clarified the stigma sources, behavioral manifestations, and coping experiences of these patients. This fills gaps in relevant research and provides precise targets for subsequent interventions.

This study has two limitations: first, single-center sampling leads to insufficient geographical representativeness, restricting result generalization to hemodialysis patients across different regions and hospital levels; second, the 14-participant qualitative sample has limited group characteristic coverage, failing to fully reflect stigma differences among patients with varying ages, dialysis durations, and family structures. Based on this, future research should conduct multi-center/regional studies to verify the universality and regional differences of stigma characteristics; develop interventions targeting the “social prejudice-family pressure-self-denial” stigma sources and test their effectiveness via randomized controlled trials; and integrate quantitative methods to design a “Hemodialysis Patient Stigma Assessment Scale” for quantifying stigma, exploring its links with patients’ health indicators, and providing objective intervention evaluation metrics.