داغ ننگ سرطان: واکاوی فهم بیماران از اَنگ اجتماعی (مقاله علمی وزارت علوم)
درجه علمی: نشریه علمی (وزارت علوم)
آرشیو
چکیده
سرطان ازجمله بیماری هایی است که همواره با پدیده اَنگ اجتماعی همراه بوده و فرد بیمار، علاوه بر رنج جسمانی، با قضاوت های اجتماعی نیز مواجه می شود. هدف این پژوهش، واکاوی درک و تجربه بیماران مبتلابه سرطان از قضاوت ها و برچسب هایی است که به صورت اجتماعی بر آنان وارد می شود. رویکرد پژوهش، کیفی و با استفاده از راهبرد داده بنیاد هدایت شده است. داده ها از طریق مصاحبه های نیمه ساختاریافته گردآوری شد و تا دستیابی به اشباع نظری ادامه یافت. مشارکت کنندگان شامل ۱۳ نفر (۴ مرد و ۹ زن) مبتلابه سرطان بودند. مصاحبه ها پس از پیاده سازی، با استفاده از نرم افزار MAXQDA کدگذاری و مقولات و مفاهیم اصلی استخراج و تحلیل شد. یافته ها نشان داد که نگرش منفی، ترس و تصور گناه از فرایند ابتلا، موجب پنهان کاری، انکار و انزوای بیماران شده و سلامت روانی آنان را تهدید می کند. عوامل زمینه ای مانند شدت و تکرار اَنگ در محیط های مختلف، نقشی اساسی در تداوم این نگرش ها دارند. حمایت خانواده و رفتار مثبت کادر درمان می تواند تا حد زیادی آثار منفی را کاهش دهد، درحالی که تبعیض و رفتارهای منفی، حس بی ارزشی و اضطراب بیماران را تشدید می کند. تغییر در باورهای فرهنگی و آموزشی، مشارکت فعال بیماران در آگاه سازی جامعه و اصلاح سیاست های نهادهای درمانی، از مهم ترین راهکارهای کاهش اَنگ و تبعیض هستند. درنتیجه، ایجاد فضای حمایتگر و پذیرش اجتماعی می تواند کیفیت زندگی بیماران را بهبود بخشد، همدلی را در جامعه گسترش دهد و رویکردی انسانی تر در برخورد با بیماران سرطانی فراهم سازد.Cancer Stigma: A Qualitative Study of Patients’ Perceptions of Social Labeling
Cancer is inherently associated with social stigma, where patients are not only affected by the physical suffering of the disease but also face social judgment. This study aims to explore how individuals with cancer perceive and understand the judgments and labels placed upon them socially. The research adopts a qualitative approach guided by grounded theory methodology. Data were collected through semi-structured interviews, which continued until theoretical saturation was reached. The participants included 13 individuals - 4 men and 9 women - diagnosed with cancer. The interviews were transcribed, coded using MAXQDA software, and analyzed to extract relevant categories and concepts. The findings reveal that negative attitudes, fear, and feelings of guilt related to the diagnosis lead to concealment, denial, and social withdrawal, thereby threatening patients’ mental health. Underlying factors such as the intensity and repetition of stigma across various environments play a significant role in sustaining these perceptions. Support from family and positive behaviors from healthcare providers can substantially reduce these negative effects, while discrimination and negative interactions exacerbate feelings of worthlessness and anxiety among patients. Changing cultural and educational beliefs, active patient participation in raising societal awareness, and reforming healthcare policies are key strategies for reducing stigma and discrimination. Consequently, creating a supportive and accepting social environment can improve patients’ quality of life, foster empathy within the community, and ultimately promote a more humane approach to caring for cancer patients.
Extended Abstract
1. Introduction
Cancer, as one of the leading causes of mortality worldwide, not only poses physical challenges for patients but is also accompanied by social stigma and negative judgments. These stigmas lead to rejection, isolation, and reduced quality of life for patients. This study aimed to explore the understanding of cancer patients regarding social stigma and its impact on their lives. The research sought to answer the question of how cancer patients experience social stigma and what consequences these experiences have for them. Previous studies have shown that the social stigma of cancer manifests in various ways across different societies and acts as a barrier to early diagnosis, treatment, and social participation. For instance, research in India and Turkey has demonstrated that fear of stigma leads to concealment and delays in seeking treatment. In Iran, studies such as those by Mazloumi et al. (2023) have emphasized the role of cultural and social factors in exacerbating stigma. However, this study provides a deeper analysis of the phenomenon by focusing on the lived experiences of patients. The theoretical framework of this research is based on Goffman's theory of stigma, which defines stigma as an attribute that discredits individuals in society. Goffman identifies three types of stigma: physical, psychological, and identity-related. In this study, cancer stigma is considered a combination of these three types, affecting patients' identities and social relationships.This study employs a phenomenological approach to map how these macro-level stigma structures become internalized as lived experience. By examining the dialectic between societal narratives and individual meaning-making, we reveal the adaptive strategies patients develop to navigate this hostile psychosocial landscape. The subsequent sections present findings through the novel theoretical lens of "stigma embodiment," demonstrating how social perceptions become biologically embedded in patients' illness trajectories. This paradigm shift has profound implications for precision medicine approaches in oncology, suggesting that comprehensive cancer care must address malignant cells and malignant social environments with equal urgency.
The present study seeks to answer two interrelated questions: How do cancer patients in Iran experience social stigma, and what consequences do these experiences have for their identities, relationships, and health trajectories? By foregrounding the voices of patients themselves, this research aims not only to expand theoretical understanding of stigma but also to provide practical insights for healthcare providers, policymakers, and community leaders. Ultimately, it argues that any effective strategy for cancer care must adopt a biopsychosocial perspective-recognizing that healing requires dismantling both the medical and social dimensions of disease.
2. Methodology
This qualitative study utilized a grounded theory approach. Data were collected through semi-structured interviews with 13 cancer patients (4 men and 9 women). Sampling was conducted using purposive and snowball techniques, and interviews continued until theoretical saturation was achieved. Participants were selected from among patients who had been diagnosed at least one year prior to ensure they could fully articulate their experiences. The interview data were coded and analyzed using MAXQDA software. The analysis process involved three stages: open, axial, and selective coding. Open coding extracted initial concepts, axial coding organized these concepts into main and sub-categories, and selective coding culminated in the development of a paradigmatic model. This model included causal conditions, contextual factors, coping strategies, and the consequences of social stigma. To ensure validity, methods such as member checking and inter-coder agreement were employed. Additionally, neutrality and accurate reflection of patients' experiences were prioritized to enhance the trustworthiness of the findings.
3. Findings
The findings are presented within five main categories:
Causal Conditions:
- Negative Societal Attitudes: Patients reported that society associates cancer with death and disability, leading to rejection and discrimination.
- Perceived Association with Sin: Some patients, particularly women with cervical cancer, felt that society viewed their illness as a consequence of immoral behavior.
- Fear and Disgust: Avoidant behaviors, such as separating patients' utensils, exacerbated feelings of isolation.
- Lack of Family Support: Some patients faced rejection or inadequate emotional support from their families.
Contextual Factors:
- Domains of Stigma: Stigma was experienced in various settings, including workplaces, healthcare facilities, and even within families.
- Intensity and Repetition of Stigma: Some patients reported frequent and severe encounters with stigma.
Coping Strategies:
- Concealment and Denial: Many patients hid their illness to avoid judgment.
- Social Withdrawal: Some patients completely withdrew from social interactions.
- Efforts to Change Societal Attitudes: Some patients, especially women, participated in awareness-raising initiatives.
- Acceptance of Illness: Over time and with counseling, some patients came to terms with their condition.
Intervening Conditions:
- Avoidant Behavior of Healthcare Providers: Some patients faced discrimination in medical settings.
- Economic Insecurity: Fear of job loss compelled patients to conceal their illness.
- Feelings of Inferiority and Psychological Distress: Patients struggled with diminished self-esteem and depression.
Consequences:
- Isolation and Withdrawal: Fear of stigma drove patients to distance themselves from society.
- Depression and Anxiety: The psychological toll of stigma threatened patients' mental health.
- Sense of Abnormality: Patients perceived themselves as fundamentally different from others.
- Savior Victims: Some patients contributed to societal awareness by openly discussing their illness.
4. Conclusion
This study reveals cancer stigma as a complex social pathology that operates as both cause and consequence of health disparities. The findings suggest that stigma doesn't merely accompany cancer - it actively worsens health outcomes by discouraging early detection, complicating treatment adherence, and undermining recovery environments.
The psychological toll of stigma creates what might be termed a "parallel illness" - a set of social and emotional challenges that exist alongside the physical disease. Patients describe navigating two simultaneous battles: one against malignant cells, and another against malignant social perceptions. This dual burden disproportionately affects already vulnerable populations, turning cancer into not just a medical condition but a social justice issue. Three critical insights emerge from the research: First, stigma's power lies in its invisibility. Unlike physical symptoms that can be medically treated, stigma operates through subtle social cues, unspoken assumptions, and institutional blind spots. This makes it both pervasive and particularly challenging to address. Second, stigma is relational. It doesn't reside solely in patients or in society, but in the space between them - in the changed nature of social interactions post-diagnosis. This explains why even well-meaning friends and family can unintentionally perpetuate stigmatizing behaviors. Third, stigma is mutable. While powerful, the study found numerous examples of patients successfully reshaping narratives around their illness through advocacy, art, and open dialogue. These cases point toward potential interventions. The study suggests that effective anti-stigma efforts must move beyond simple awareness campaigns to address the deeper social structures that sustain stigma. Medical training should include stigma-reduction components, workplaces need clear protections for cancer patients, and media should humanize rather than sensationalize cancer narratives. Future research should explore generational differences in stigma experiences and investigate the longitudinal impacts of stigma on treatment outcomes. Comparative studies across cultures could reveal how different social systems either mitigate or exacerbate cancer-related stigma. Ultimately, addressing cancer stigma requires recognizing it as a public health priority equal in importance to treatment innovation. Just as precision medicine targets specific cancer mutations, precision sociology must target the specific social mutations that allow stigma to persist. Only by treating both the biological and social dimensions of cancer can we claim to be truly providing comprehensive care.
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