Breaking the Silence: How Online Forums Address Lung Cancer Stigma and Offer Support (2024)

Abstract: Lung cancer remains a leading cause of cancer-related deaths, but public support for individuals living with lung cancer is often constrained by stigma and misconceptions, leading to serious emotional and social consequences for those diagnosed. Understanding how this stigma manifests and affects individuals is vital for developing inclusive interventions. Online discussion forums offer a unique opportunity to examine how lung cancer stigma is expressed and experienced. This study combines qualitative analysis and unsupervised learning (topic modelling) to explore stigma-related content within an online lung cancer forum. Our findings highlight the role of online forums as a key space for addressing anti-discriminatory attitudes and sharing experiences of lung cancer stigma. We found that users both with and with- out lung cancer engage in discussions pertaining to supportive and welcoming topics, high- lighting the online forum’s role in facilitating social and informational support.

## introduction lung cancer remains a leading cause of cancer incidence and mortality worldwide, accounting for approximately 2 million new diagnoses and 1.8 million deaths annually @xcite . despite its prevalence, lung cancer is often heavily stigmatised due to its association with smoking, leading to the misconception that the disease is self-inflicted @xcite . individuals may encounter lung cancer stigma in three distinct but interconnected forms: enacted stigma, which involves perceived judgment or discrimination from others, such as friends, family, or healthcare providers; anticipated stigma, defined by the fear or expectation of being discriminated against; and internalised stigma, characterised by personal feelings of shame and guilt @xcite @xcite . as a consequence, the burden of societal judgment and blame contributes to significant emotional distress, such as anxiety and depression, and can also deter individuals with lung cancer from seeking medical help or support for quitting smoking @xcite . social support is defined as the assistance available to a person through their connections with others, including individuals, groups, and the broader community @xcite . research indicates that with more social support, individuals are less likely to internalise societal stigma as negative selfperceptions, thereby protecting their mental health @xcite . additionally, individuals are encouraged to seek support via online forums @xcite . these forums combat stigma by fostering supportive communities that offer companionship and empathy @xcite . thus, online forums serve as valuable resources for analysing how lung cancer stigma is expressed and experienced. natural language processing (nlp) techniques present a useful tool to better understand how lung cancer stigma and social support is addressed in online discussions. this study applied nlp techniques to identify stigma-related posts and comments within a lung cancer forum. the primary objectives were to (1) identify content that challenges or reinforces stigma, (2) examine how lung cancer stigma is represented in online discussions, and (3) explore how the forum fosters support among individuals with lung cancer (iwlc) and individuals without lung cancer (iwolc) through cross-collection topic modelling @xcite . the key findings corresponding to these objectives are as follows: researchers have explored lung cancer discussions, revealing trends in discussion topics and support across platforms. shah et al. (2024) applied topic modelling and time-series analysis to uncover trends and seasonal variations in lung cancer discussions, showing that curative and palliative care topics peak at different times. zhao et al. ( 2019 ) explored the differences in lung cancer discussions across platforms like twitter, facebook, and macmillan.org.uk, revealing that while all platforms were largely used to provide information, the nature of the interactions and support varied. for example, twitter fostered more companionship support through hashtags, whereas macmillan.org.uk had more emotional and informational support. despite progress in understanding lung cancer discussions online, there is still a lack of research specifically on lung cancer stigma in these forums. a european social media study touched on stigma briefly, noting that platforms often emphasise that anyone can get lung cancer @xcite . another text analysis study, based on phone interviews transcripts, found that both patients and caregivers experience stigma @xcite . @xcite used a roberta model, in conjunction with handcrafted features, to identify internalised, anticipated, and enacted stigma related to substance use, similar work on lung cancer stigma is still limited. research also indicates that public attitudes may vary across different demographics and groups, such as posts made between patients and family members @xcite . to our knowledge, no prior research has examined forum discussions between iwlc and iwolc using unsupervised text analytics. ## discussion this study examined how online forum discussions address lung cancer stigma and provide support by analysing 66,264 entries from lungevity.org. the findings indicate that the online forums may serve as platforms for sharing anti-stigma information. forum administrators and moderators were instrumental in promoting anti-discriminatory content through educational posts and articles to raise public awareness. these results align with the study of @xcite highlighting the important role of community moderators in online spaces. we identified stigma-related content in the forms of anticipated, enacted, and internalised stigma. in line with previous study @xcite , the forum reflected internalised stigma, often seen as guilt and reluctance to discuss one's condition, particularly among former smokers. enacted stigma was associated with public attitudes viewing lung cancer as self-inflicted, and users with lung cancer reported discomfort sharing their diagnosis, highlighting how questions about smoking history may reinforce stigma @xcite . our study highlights differences in the language used by iwlc and iwolc, providing a view to understand the support and welcoming dynamics within lungevity.org forum. iwolc include administrators, moderators, and members, while iwlc include of moderators and members. the keyword "caregiver" in iwolc posts suggests that caregivers use the forum to seek information and share their experiences. additionally, keywords such as "please feel free", "community", and "lcsc (lung cancer support community)" are more commonly used by moderators and administrators, highlighting their focus on organising, offering support, and providing information and resources. in contrast, iwlc tend to use more illnessrelated terms like "treatment", "diagnosis", and "journey", reflecting their focus on navigating their condition and seeking information. words like "welcome", "stay", and "group" emphasise the emotional connection and sense of belonging within the community. these findings align with research by @xcite , who observed that iwlc more often discuss hospital visits and health concerns, reflecting a need for practical and emotional support. however, the support from iwolc, such as moderators, appears less emotionally charged. this could be due to the fact that nearly half of iwolc's posts and comments are made by administrators and moderators, whose main responsibility is to maintain a positive, inclusive environment for safe user interaction. as part of their role, their language is often more neutral and informational, using phrases such as "welcome to lcsc", "please feel free to", and "lungevity offers various resources to support". this helps establish a sense of order and structure within the forum. research also supports this, suggesting that while moderators provide valuable resources and guidance, their communication tends to reflect a neutral tone, which aligns with their responsibilities in managing the forum and ensuring balanced discussions @xcite . building on this, our findings also highlight that moderators and administrators play a central role in fostering a safe and supportive space within the forum. consistent with previous studies, we found that their primary responsibility goes beyond providing emotional support. instead, moderators focus on promoting engagement by facilitating discussions and ensuring community interaction. they may reframe posts to encourage responses and act swiftly to address harmful content, safeguarding the well-being of users, as seen in the work of @xcite . ## conclusion and limitation this study shows how online forums can help address lung cancer stigma and provide support for iwlc and iwolc. by analysing discussions on lungevity.org, we found that these platforms not only facilitate the sharing of personal stigma experiences but also promote anti-discriminatory attitudes. the distinct language used by iwlc and iwolc highlights the community's supportive dynamics, with caregivers seeking information, moderators and administrators offering guidance, and iwlc navigating their conditions. however, the dataset is derived from a single forum and may not reflect the broader lung cancer community. additionally, manual annotation and thematic analysis may not necessarily yield generalisable results and may not capture the full scope of lung cancer stigma manifestations. future research would benefit from utilising more diverse data sources and exploring more fully automated methods for stigma detection, including leveraging large language models (llms) to enhance thematic analysis. stigma type category illustrative quotes internalised stigma guilty "sometimes i wonder if the initial irritation i feel when people ask if i smoked is actually hiding the guilt i have for having smoked for so long." "after a biopsy confirmed a diagnosis of non-small cell squamous cell lung cancer, i felt both fear and guilt about my history of smoking." "i regret having smoked for as long as i did, but i'm deeply grateful that i eventually quit." not upfront "however, i'm not as open about my lung cancer." enacted stigma public's attitude: asking about smoking history "whenever i tell people i have lung cancer, the first question is always, "did you smoke?"" "maybe i'm more sensitive than others, but i can't stand it when people hear i have lung cancer and immediately ask if i smoked." public's attitude: viewing lung cancer as self-inflicted