Analyzing Smoking Challenges in Bladder Cancer Patients From an Online Forum: A Contemporary Qualitative Study of Peer Support and Cessation Motivators

Abstract

Background

Motivators and barriers to smoking cessation among bladder cancer (BC) survivors remain largely understudied. A novel approach to exploring these challenges is through analyzing user discourse on internet forums, which offer valuable insights into patients’ lived experiences.

Objective

To qualitatively examine smoking cessation in former and current smokers with connections to BC using Reddit.

Methods

All posts on the subreddit “r/stopsmoking” was queried for “bladder cancer” and its MeSH terms. Threads with anecdotal experiences on BC and smoking were included for analysis. Grounded theory was used to inductively analyze the original posts. Two independent reviewers arranged original posts into individual excerpts to identified preliminary themes. These categories were refined to derive resultant concepts.

Results

145 total discussions (17 BC original posts by former and current smokers and 128 reponses) were included. Grounded theory identified 4 themes: coping with BC, fluctuating motivators, resilience and determination amidst smoking relapse, emotional release. Three resultant concepts were formed: BC impacts quality of life, BC experience serves as a motivator for smoking cessation, and successful smoking cessation relies on a robust support network.

Conclusions

This study unveils BC experiences without judgment apprehension. The diagnosis of BC and patients’ shared experiences may serve as catalysts to quit smoking. These themes and concepts on BC’s impact on smoking can assist clinicians to have tailored cessation discussions.

Introduction

Understanding how patients with bladder cancer (BC) perceive smoking and cessation is crucial for delivering patient-centered care. Social media platforms offer a unique window into unfiltered discussions about the daily struggles and triumphs of individuals navigating BC and the journey to quit smoking. ¹ These platforms provide a dynamic record of the evolving challenges faced by patients, along with insights into the barriers and facilitators that shape their cessation efforts. Diverse platforms like Reddit, with its wide-ranging user base (over 500 million user accounts), enable organic exploration of these topics, offering a broad and generalizable perspective. ² The Reddit forum “r/stopsmoking,” boasting over 1 71 000 users, serves as a rich resource for observing peer support and motivation, potentially informing more effective intervention strategies.

While evidence-based approaches such as pharmacotherapy and behavioral counseling to smoking cessation have proven effective in clinical trials, ³ real-world adoption depends on addressing patient-specific motivators and barriers ⁴ that may not be captured in structured interventions. ⁵ This study seeks to address these gaps by qualitatively analyzing the perspectives of Reddit users who smoke, uncovering their unique experiences with BC and the challenges and successes of smoking cessation.

Methods

This study followed the Standards for Reporting Qualitative Research guidelines ⁶ and previously reported qualitative methodology for several urological conditions.^7–12 Reddit functions as an online platform for public discourse that is structured into distinct forums called Subreddits. Each Subreddit is dedicated towards specific discussion topics, with individualized threads catering to users’ unique discussions and concerns.

All posts (2013-2024) on the Subreddit “r/stopsmoking” were queried for “bladder cancer” and associated terms from the National Library of Medicine’s Urinary Bladder Neoplasms MeSH Descriptor Data 2024 in July 2024. Additional terms commonly accompanying BC were also searched: “blood in urine”, “hematuria”, “peeing blood”, “urothelial carcinoma”, and “transitional cell carcinoma”. Two independent researchers, with familiarity in qualitative research, manually extracted and assessed Reddit posts and responses for inclusion in this study. Inclusion criteria included original posts and responses on r/stopsmoking with content mentioning BC or related terms and discussion of personal smoking cessation experiences. Exclusion criteria included off-topic discussion and posts without relevance to BC or smoking cessation. Original post date, number of up votes, users’ number of years smoked, and users’ smoking characteristics were extracted. A qualitative thematic approach and principles of grounded theory as described by Charmaz were utilized. ¹³ Therefore, sample size was determined by thematic saturation rather than power calculation.

In the open coding phase, all Reddit posts and responses meeting this study’s inclusion criteria were segmented into individual excerpts. These excerpts were then reviewed line-by-line to identify significant concepts, ideas, and expressions. Two independent researchers assigned initial codes to each excerpt, to capture users’ experiences, emotions, and behaviors as they related to smoking cessation and BC. This process was intentionally broad and inclusive so that the content perspectives was preserved. Following this, axial coding aimed to identify relationships among the initial open codes. Codes were first clustered around central phenomena. Interactions and conditions between these were then examined. This relational mapping facilitated the organization of open codes into more refined preliminary themes in the selective coding phase so that user behavior and shared emotional trajectories can be determined. In the selective coding phase the reviewers narrowed the focus to the most prominent themes that consistently recurred across the dataset. These were refined until thematic consensus was achieved between the reviewers. Instead of testing a predefined hypothesis, grounded theory recognizes a research context and lays the groundwork for subsequent research. With the goal of moving beyond a descriptive thematic anlaysis, the final theoretical coding framework involved the grouping of themes to derive unique resultant concepts that reflect broader psychosocial processes. For instance, rather than simply reporting emotional expressions like regret, isolation, or determination as individual themes, we examined how these emotional and behavioral responses to BC and smoking cessation interacted and evolved across users’ posts. The final resultant concepts were discussed and agreed upon in committee by the 2 initial reviewers.

Results

Seventeen original posts and 128 responses were evaluated for a total of 145 smoking related discussions. Among the 17 original posts, 7 Reddit users reported years smoked (mean 21 years). Sex/gender was rarely disclosed in posts, reflecting Reddit’s anonymity and a limitation in demographic characterization. The intial iterative thematic approach yielded 4 distinct preliminary themes (Table 1). The first theme was related to coping with BC. Users expressed sentiments of regret and self-disappointment, acknowledging that their awareness of the need to quit smoking only became pronounced after the onset of symptoms and the formal diagnosis of BC. They also mentioned symptoms such as seeing blood in their urine and going to urologist to remove their bladder tumor. The second theme was related to fluctuating motivators. Users discussed how various life events affected motivations for smoking cessation. Some experienced a positive shift as they embraced lifestyle changes, ultimately leading to a decreased interest in smoking. BC also served as a pivotal factor for influencing their perspectives. The third theme was related to resilience and determination amidst smoking relapse. Users recounted the circumstances surrounding their relapses and highlighted their use of r/stopsmoking for seeking advice to facilitate smoking cessation. They also used this forum as a constructive means of distraction, discussing the challenges they faced with a persistent yearning and desire to quit. Despite feelings of frustration, there was an undercurrent of hopefulness in their narratives. The fourth theme was related to emotional release. Users shared that this subreddit served as a tool to divert their thoughts from smoking when cravings arose. Within these discussions, users expressed emotions of isolation and loneliness. Table 1 provides illustrative quotes representing these themes.

Table 1.

Themes and Resultant Concepts in Smoking Cessation Among Redditors With Bladder Cancer Experiences

Preliminary themes	Representative quotes
1. Coping with BC	“I am currently battling cancer and after discovering I am peeing blood again, when I shouldn’t be, I got weak and bought a pack.” “Well, years later, here I sit, still smoking, recovering from cancer surgery, and realizing it might not be so easy to quit this time around.” “The bladder cancer he had the previous year that caused him to wear a colostomy bag was, too. He was only 60. “I was blown away when my dad, smoking since he was 14 (now 60s), was diagnosed with stage 4 bladder cancer.”
2. Fluctuating motivators	“But what I am looking forward to is the fact of introducing a dicipline. I need to change my lifestyle - but I do it in small steps. I have mentioned it in another comment (drinking tea instead of energy drinks, shower with hot and ice cold water for blood pressure stimulation).” “I do not sit in the same spots I used to smoke in, and I started a brand new hobby, one that I do not relate to smoking in anyway. (Sketching).”
3. Resilience and determination admist smoking relapse	“Don’t get me wrong, half the time I feel terrified (if that’s the right word) that I will go back, but I lurk on this subreddit at least every hour, I keep distracted, and I eat. Whatever it takes to follow these 2 steps.” “Like many folks, I used the occasion of a new year as motivation to say farewell to tobacco and have remained strong but challenged through these 5 weeks.”
4. Emotional release	“I plan on resuming my quest to beat cancer and stay off cigarettes. I really don’t know why I am posting this, just bored and lonely I suppose. Not really seeking pity or anything, just felt like unloading a little. I actually feel better writing this. My cats like me though, and they never judge… They just stare… and wait… (lol).” “I think writing about where I stand might be decent therapy for me, maybe for others too, so here it goes.”

Resultant concepts	Representative quotes
1. BC negatively affects quality of life	“My friends who smoke are struggling with their health, their time, money, and they smell awful! My non-smoking friends aren’t struggling like that. All my smoking friends say they wish they could quit, but none of my non-smoking friends ever say that they want to start smoking.” “It is just hard and depressing. Really don’t have anyone to talk to about it either. My co-workers are friend-like, but mostly just acquaintances.”
2. Smoking cessation relies on a strong support network	“The idea has been floating around for a while now, ever since my dad got bladder cancer last year. But as long as one of us still smokes, the others aren’t going to stop. Tonight I proposed that on Saturday (after my dad’s third cancer screening) we all quit together.” “Hey I’ll start with ya today. We got this!”
3. BC experience is a motivator for smoking cessation	“Feeling good about the effort now, and in 2 weeks I see my doctor again to get scoped to see if he got all the cancer from my bladder on the last procedure. He is gonna be really happy that I stopped smoking!” “I was diagnosed with bladder cancer over a year ago and after putzing around with it and tumors keep coming back i got it in my mind that I really should quit.”

Three resultant concepts were derived from these themes in accordance with grounded theory’s approach to conceptual framework development (Table 1). The first resultant concept identified was that BC impacts quality of life. Users experienced mental and physical distress, with their daily routines being disrupted. The second resultant concept was that successful smoking cessation relies on a robust support network. Table 2 highlights quotes that represent Reddit user support through shared experiences, practical advice, and emotional support. Users shared their personal smoking cessation journeys in hopes of helping others facing similar challenges. These narratives often included individual timelines for quitting and described how a BC diagnosis influenced their decision-making. Many posts reflected the struggles users faced during the process. Practical advice was frequently offered to those experiencing relapse, with contributors often acknowledging that quitting methods are highly individualized and may not work for everyone. Emotional support was commonly provided in the comments, where users offered words of encouragement regardless of whether the original poster was facing setbacks or celebrating progress. Of the responses, 61 offered encouragement for smoking cessation. There were 19 follow-up responses acknowledging help received. Responses that offered cessation advice received a total of 85 up votes. The resultant concept was that BC experience serves as a motivator for smoking cessation.

Table 2.

Representative Quotes on User-Driven Smoking Cessation Support From Original Post Responses

User-driven support on reddit	Representative quotes
Shared experiences	“Wowzers, that hit home. Thank you for sharing.” “You know what happened to you could have been anyone of us smokers. It’s sad and unfortunate when our habits catch up to us.” “My father was a heavy smoker and wound up with bladder cancer. He no longer has a bladder. Thanks for posting”
Practical advice	“While I personally don’t agree that it’s as miraculous as the book itself and others have suggested in this sub, the infamous The Easy Way by Allan Carr helped me tremendously!” “After 42 years I needed a full on, all available support approach. The I am sober app is good for cigs. Plus Easy Quit. I also did an online SMART recovery group.”
Emotional support	“Hug. There is no shame in it. Cigarettes are so hard to quit and stress is a major trigger… The cigarette didn’t help you feel better about seeing the blood, in fact it made you feel worse. You can do this. You can quit. You can get better.” “I’m sorry you’re in all this alone A hug from an internet stranger.” “Be kind to yourself and be patient. Lots of health and good thoughts sent your way”

Discussion

Smokers on Reddit create a supportive community that fosters mutual aid in the journey to quit smoking, particularly in the context of BC. BC’s negative impact on quality of life for individuals who smoke is multifaceted. Aside from dealing with BC-induced difficulties, managing concurrent medical conditions adds a layer of complexity.

Firstly, BC was found to have a negative impact on smoking individuals’ quality of life. Catto et al ¹⁴ reported similar findings of decreased sexual function and financial toxicity observed among inidividuals living with BC. Similarily, Smith and colleagues ¹⁵ found that individuals with BC had declines in vitality and social functioning scores. While our data could not discern these intricacies, we were able to observe that Reddit users who have BC experiences and smoke have overall sentiments of stress, struggle, and frustration. One user described BC diagnosis leading to a decline in health and noted a shadow of his former self. Additionally, users resorted to smoking as a result of this debilitating yet treatable condition. None of the posts disclosed the type of BC users had; the separation between non-muscle-invasive and muscle-invasive BC could be important as muscle-invasive BC is associated with decreased quality of life. Thus, further investigation of individuals smoking cessation attitudes and perspectives in relation to the clincal extent of BC through focus group studies may be important.

Second, among the challenges reported by Reddit users, a compelling and contrasting dimension emerged. BC becomes a powerful motivator for individuals to embark on the journey of smoking cessation. Previous qualitative research from the Danish STOP-OP trial, a multi-center randomized controlled trial on patients who underwent radical cystectomy, found that individuals saw smoking cessation intervention as a part of the preparation for surgery rather than as two separate entities. ¹⁶ One of the struggles identified from this thematic analysis was breaking habits because smoking for many was a habitual response. Similar to the users on Reddit, motivations for cessation frequently fluxed, potentially as a means to overcome dependence. Further, follow-up results from the STOP-OP trial found that participants viewed this smoking cessation intervention prior to cystectomy as meaningful, given the high rate of compliance observed. ¹⁷ Outcomes also included statistically significant quitting in 51% of individuals in the intervention arm. Recognizing this dual nature of a BC diagnosis may assist in comprehensively understanding smoking behavior dynamics among individuals grappling with BC.

Third, some patients who smoke also appear uncomfortable with discussing smoking with their healthcare provider. ¹⁸ Therefore, striving to understand the smoking cessation motivators in the clinical enviornment may be challenging. An Australian-based qualitative study of individuals with severe mental illness who smoke, found that peer support from both smoking and non-individuals helped participants to maintain motivation. ¹⁹ Additionally, participants felt clinician support with quit attempts was important and unsolicited advice from clinicians to quit was not useful. However, findings from a study on surgical lung cancer patients suggest some do welcome smoking cessation support and prefer health professionals to address smoking directly. ²⁰ One strength of our study is that the authentic emotions and expressions of individuals that struggle with smoking cessation and BC experiences were captured. The findings of our study thus provide key insight into smoking cessation without judgment apprehension. Users on platforms like Reddit showed openness and comfort in seeking support from other smokers facing similar challenges, suggesting the importance of peer connections in their journey. These findings offer valuable implications for urologists and healthcare providers, suggesting that personalized, nonjudgmental counseling tailored to individual motivations could help bridge the gap in understanding patient-level barriers to quitting. While our study did not measure counseling effectiveness, the peer support mechanisms we identified (eg, shared narratives, non-judgmental space) could inform the design of counseling programs. Future research should test integrating these elements.

This study is not without limitations. One limitation is the self-selection of online forum participants, thereby excluding individuals without an active presence, those who choose not to engage online, or those who engage on other online patforms, such as Quora or social media sites like Facebook, Instagram, X (formerly Twitter), and TikTok. The identification of only 17 posts on Reddit is a relatively small sample size and may potentially impact the generalizability of our findings. The study did not perform a formal sample size calculation prior to data collection, as this is typical for qualitative, hypothesis-generating research. However, given the thorough search of all posts, this suggests that BC discussion may be sparse among smoking individuals compared to more commonly known effects of smoking on lung cancer and reconfirms a gap in knowledge. ²¹ While qualitative methodologies may raise concerns about credibility and transferability, we minimized investigator bias by using 2 independent reviewers to analyze the data and achieve thematic/ resultant concept consensus. Further, utilizing social media posts for digital ethnographic analysis has demonstrated credibility and effectiveness for gathering qualitative data, such as on e-cigarette and cessation discussions on Reddit. ²²

Conclusion

Smoking individuals with BC experiences on Reddit are supportive of one another’s attempt to quit smoking by offering advice and sharing personal stories. For many, BC experience is a pivotal factor for smoking cessation. While the relationship between the two are nuanced, the categories identified herein may foster improved patient education on smoking cessation as part of comprehensive urological care.