“You feel like you have a neon light over your head ”: A Qualitative Study Examining the Experiences and Perspectives of Family Members regarding the Stigma of those Diagnosed with Lung Cancer

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Abstract Purpose: Individuals with lung cancer experience significant stigma regarding their diagnosis due to its association with smoking behaviours. To our knowledge, lung cancer sigma has yet to be explored from the perspective of family members. Family members are often the primary caregiver for individuals with lung cancer and as a result may witness firsthand stigmatising behaviours towards their loved ones. Additionally, family members may experience stigma regarding their loved one’s diagnosis due to stigma by association. Thus, the current study sought to investigate their experiences and perspectives of lung cancer stigma. Methods: Eight participants were recruited using purposive and snowball sampling. A qualitative, cross-sectional design was implemented using both virtual and in-person semi-structured interviews. Interviews were audio-recorded, transcribed and analysed using thematic analysis. Results: Five themes were identified: Curiosity, or blame? Stereotypical questions about smoking behaviours and its impact, Discrimination and unfair treatment from healthcare providers, Feeling judged by association, Changing cultural and public views of smoking fuels stigma, Cognitive strategies for managing and resisting stigma. Conclusion: Family members perceived their loved ones to have experienced stigma related to their diagnosis through externalised and internalised stigma. Externalised stigma was perceived through stereotypical questioning, blame, judgements, discrimination and unfair treatment. Family members stated that this led to internalised feelings of guilt and shame. Importantly, family members stated they have also experienced stigma by association through external judgements from family and society and a loss of friendships. Implications for Cancer Survivors and Family Members: Interventions need to be put in place focusing on empathic communication skills for healthcare providers, communication training for family members and interventions focused on helping both survivors and family members cope with the impact of lung cancer stigma. Future research should focus on further examining the experiences and perspectives of family members in order to gain a broader understanding.
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“You feel like you have a neon light over your head ”: A Qualitative Study Examining the Experiences and Perspectives of Family Members regarding the Stigma of those Diagnosed with Lung Cancer | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article “You feel like you have a neon light over your head ”: A Qualitative Study Examining the Experiences and Perspectives of Family Members regarding the Stigma of those Diagnosed with Lung Cancer Sarah McCann, Simon Dunne This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-7480697/v1 This work is licensed under a CC BY 4.0 License Status: Published Journal Publication published 31 Jan, 2026 Read the published version in BMC Psychology → Version 1 posted 14 You are reading this latest preprint version Abstract Purpose: Individuals with lung cancer experience significant stigma regarding their diagnosis due to its association with smoking behaviours. To our knowledge, lung cancer sigma has yet to be explored from the perspective of family members. Family members are often the primary caregiver for individuals with lung cancer and as a result may witness firsthand stigmatising behaviours towards their loved ones. Additionally, family members may experience stigma regarding their loved one’s diagnosis due to stigma by association. Thus, the current study sought to investigate their experiences and perspectives of lung cancer stigma. Methods: Eight participants were recruited using purposive and snowball sampling. A qualitative, cross-sectional design was implemented using both virtual and in-person semi-structured interviews. Interviews were audio-recorded, transcribed and analysed using thematic analysis. Results: Five themes were identified: Curiosity, or blame? Stereotypical questions about smoking behaviours and its impact, Discrimination and unfair treatment from healthcare providers, Feeling judged by association, Changing cultural and public views of smoking fuels stigma, Cognitive strategies for managing and resisting stigma. Conclusion: Family members perceived their loved ones to have experienced stigma related to their diagnosis through externalised and internalised stigma. Externalised stigma was perceived through stereotypical questioning, blame, judgements, discrimination and unfair treatment. Family members stated that this led to internalised feelings of guilt and shame. Importantly, family members stated they have also experienced stigma by association through external judgements from family and society and a loss of friendships. Implications for Cancer Survivors and Family Members: Interventions need to be put in place focusing on empathic communication skills for healthcare providers, communication training for family members and interventions focused on helping both survivors and family members cope with the impact of lung cancer stigma. Future research should focus on further examining the experiences and perspectives of family members in order to gain a broader understanding. cancer lung cancer lung cancer stigma stigma stigmatised stigmatisation family members experiences perspectives Introduction In 2022, lung cancer was the most frequently reported cancer worldwide, with the global rate of new diagnoses being 2.5 million cases [1]. Lung cancer has the highest death rate of all cancers worldwide, with an estimated 1.8 million deaths in 2020 [2]. Smoking is recognised as the leading cause of lung cancer [3]. Unfortunately, this has led to a stigma surrounding lung cancer, which is quite pervasive in society, with many viewing people with lung cancer as being responsible for their illness due to smoking being seen as a controllable behaviour [4, 5]. Lung cancer stigma can lead to a range of negative impacts on all those affected by lung cancer, even though a substantial proportion of lung cancer survivors have never smoked. A recent review found that, worldwide, approximately 20% of men with lung cancer and up to 50% of females with adenocarcinoma are non-smokers, indicating that the number of non-smokers receiving a diagnosis is higher than previously thought [6]. According to Goffman [7], stigma is defined as an undesirable stereotype based upon an attribute, characteristic or behaviour which classifies others as different [8]. This can lead people to think that the individual affected is tainted or undesirable [5, 9–11]. Stigma experiences can be felt (internalised) and/or enacted (externalised) [7–9, 12]. Internalised stigma refers to an individuals’ internal feelings of guilt, shame, regret or blame regarding their illness and a fear of discrimination from society [4, 12, 13]. Externalised stigma can take the form of perceived or enacted stigma [4, 14] which is the perception or experience of negative attitudes from others. Discrimination is defined as unfair or prejudicial treatment of individuals based on characteristics and is a common way that externalised stigma manifests for individuals with lung cancer [8–12]. Externalised stigma can be experienced from different sources, including family members, friends, healthcare providers and society [4, 13]. In line with attribution theory, health conditions are more stigmatised when people believe the individual’s behaviour is responsible for their ill health [12, 15, 16]. In the case of lung cancer, this can occur when people link actions such as smoking with the cause of the illness [14]. This has been evidenced in past research where individuals with lung cancer are often asked “Did you smoke?” after sharing their diagnosis [16]. Oftentimes, when hearing of someone’s lung cancer diagnosis, individuals overlook the numerous other factors which can contribute to it or misunderstand that smoking is a risk factor which interacts with one’s genes rather than a direct cause of lung cancer. This stigma may be amplified by lung cancers’ high mortality rates, which lead many to see it as a death sentence [9]. Much of the research to date in this area has examined the relationship between lung cancer stigma and smoking from the perspective of those with lung cancer. This research has found that lung cancer stigma has a significant impact on an individual’s psychological wellbeing and can cause greater distress, social isolation, poorer quality of life, anxiety and depression [11, 15, 17–19]. Furthermore, the attribution of blame from stigma can leave individuals having internal feelings of shame or guilt, leading to concealment of their diagnosis from friends and family due to shame [20] or fear of judgement [4, 5, 14, 15]. Additionally, lung cancer stigma can cause individuals to delay medical help-seeking behaviours which results in later presentation of the disease and higher mortality rates [10, 13, 14]. Importantly, lung cancer stigma has been found to affect both smokers and never-smokers [21]. Studies have found mixed results regarding the amount of stigma experienced by smokers and non-smokers. Some studies found that those who currently smoke or have a history of smoking experience a higher degree of stigma compared to those who never smoked [22]. Specifically, individuals who have a history of smoking may experience a higher degree of guilt, isolation and embarrassment [23] and, in one study, the strongest predictor of self-blame was individuals believing that smoking was the cause of their cancer [19]. Additionally, a scoping review found that those with a smoking history specifically experienced a higher level of perceived stigma compared to non-smokers [15]. This blame from others is evident even after individuals quit smoking years before their diagnosis [5]. However, a more recent systematic review by the current authors found that 9 out of 11 included studies which examined stigma associations with smoking status reported no significant differences in stigma levels between smokers and non-smokers [McCann et al., 2025, manuscript under review]. Indeed, both smokers and non-smokers can report feelings of personal responsibility and regret relating to their diagnosis [4], highlighting that stigma affects individuals with and without a history of smoking. Family members are the most important source of support for people with lung cancer [24]. They are often the primary caregivers and play a vital role in the emotional and practical support of individuals with lung cancer [24]. Positive family support has been linked to better quality of life and psychological outcomes. The research on this subject that has included family members has primarily focused on how their feelings towards the diagnosis affects the level of care they give, and/or examining how it affected their relationship. Family members who blame their loved one for their diagnosis or for continuing smoking may also have higher levels of anger and less empathy towards them [25]. This can negatively impact the level of care they give [5] and is associated with higher depressive symptoms, distress and loneliness for both groups, reduced communication between them, and increased conflict and relationship distress [18, 23, 26, 27, 28]. Furthermore, some family members may even internalise blame themselves for the diagnosis, especially if they are also current or former smokers, and this may further negatively impact their relationship [23]. In spite of the above findings, there is a dearth of in-depth qualitative research regarding how family members experience and respond to lung cancer stigma. Nonetheless, it is possible to draw inferences about how stigma could affect family members from similar research in other contexts, e.g. research examining stigma of family members of individuals with other illnesses such as mental health issues or HIV [29, 30]. This research emphasizes that stigma not only affects individuals with the health issues but can also affect family members who are associated with those individuals [29, 30]. An individual’s health condition can become a source of stigmatisation for the whole family [31]. This is known as “stigma by association” and can stem from family, friends, healthcare providers and society members [29, 31]. According to Park and Park [30], family members can themselves experience negative emotional, social and interpersonal consequences of stigma by association such as fear, anxiety, guilt, shame, discrimination, social exclusion or avoiding social relationships to avoid stigma [29, 30]. These consequences can lead to family members having a reduced quality of life, long term stress and burden [30, 31]. Importantly, for the person with chronic illness, stigma often results in inadequate medical support, discrimination or negative attitudes from healthcare providers [31]. Given these important findings from other contexts, it is imperative to explore this further in family members of individuals with lung cancer. To the authors’ knowledge, there is no extant research explicitly examining the impact of lung cancer stigma on the family system. One study which examined the experiences of stigma for individuals with lung cancer and their caregivers (including some family members) found that both reported high levels of perceived stigma and psychological distress after the diagnosis [32]. They also found that caregivers experienced stigma by association from being members of the individual’s close network. However, this study only included caregivers broadly and did not specify whether caregivers were family members or hired caregivers and is therefore not comparable to what the current research aims to examine. As such, there is a clear lack of research examining the lived experience of familial stigma due to a lung cancer diagnosis and their perspective of their loved one’s experiences [10, 15, 32]. As outlined in a recent scoping review [15], exploring family members’ perspectives is needed to gain a better understanding of how stigma affects lung cancer survivors and family members in order to develop supports which may help moderate stigma and improve quality of life for both the lung cancer survivor and their family members. Examining this subject through qualitative research also allows for an in-depth insight into how stigma affects family members in various ways through talking about their experiences in their own words and allows for richness of responses in order to identify important themes [32, 33]. Therefore, the current study sought to address these gaps by exploring the following questions: From the family member’s perspective, what type of stigma do their loved one’s experience and what effect does this have on their loved one? Do family members experience stigma from others regarding their loved one’s diagnosis? Methodology Design A cross-sectional qualitative approach was used for the current study as this has been found to be valuable in the exploration of depth and richness of responses in under-explored areas [32]. Interviews allow for the discussion of sensitive issues such as stigma which can be a sensitive topic that is difficult to capture in a nuanced way in quantitative data [33]. Semi-structured interviews consisting of open-ended questions were used to explore the experiences and perspectives of lung cancer stigma from the perspective of family members of those with a diagnosis. This allowed for answers to be flexible in nature. Interviews were conducted over a five month period and analysis was completed over a two month period in 2025. Participants & Recruitment A non-probability purposive sampling method was used to target family members of individuals with lung cancer, with the aim of capturing a range of familial relationships. Participants completed semi-structured interviews and were recruited based on a set of inclusion and exclusion criteria set out by the researchers. The inclusion criteria required that participants were over 18 years old, a family member of someone with a lung cancer diagnosis, or someone who had lost a family member due to lung cancer in the last 10 years and must have resided in Ireland. Participants were excluded if they were non-fluent English speakers, those who did not have full capacity to give consent and those who had been bereaved within the previous month to protect against any potential vulnerability following their loss. Recruitment took place over a six month period from January to June 2025. A number of different avenues were used to recruit such as through contact with cancer organisations, social media, posters placed around university campuses and cancer support centres in Ireland and through snowball sampling. Cancer organisations such as Breakthrough Cancer, the Irish Cancer Society, the Marie Keating Foundation, the Irish Lung Cancer Community and various groups such as Cancer Care West, Purple House, ARC, Family Carers Ireland and Care Alliance Ireland were contacted to ask if they could share the study information. Emails were sent from both authors with a description of the study and recipients were asked if they could share the recruitment poster. The organisations obliged in sharing the recruitment poster through their social media platforms such as LinkedIn, Instagram and Facebook. Additionally, cancer support centers obliged in putting the poster up in physical spaces in their services such as waiting rooms. Recruitment also took place through posting advertisements on the first authors’ personal social media platforms such as Facebook, Instagram and LinkedIn in order to engage with a wider range of participants. Additionally, snowball sampling was used by asking participants if they could share the poster with anyone who they thought may be eligible to take part. When a potential participant got in touch to flag their interest, the first author emailed them with additional information about the study in the form of the plain language statement and also sent a consent form for them to read. Data Collection This project received full ethical approval from the DCU university psychology ethics committee (DCUPEC_2025_157). Data collection took place over six months from January 2025 to June 2025. Eight semi-structured interviews were conducted as part of the data collection process. Three interviews were conducted virtually via Zoom; three interviews were face-to-face (one on the DCU campus and two in participants’ homes) and two were conducted over the phone. The average length of the interviews was 48 minutes and ranged from 27 minutes to 1 hour and 9 minutes. Individuals who completed a virtual or phone interview were sent an online consent form to complete an interview only to send back to the researcher in advance of the interview. For those who completed in-person interviews, participants were given the option of completing the consent form online and sending it back in advance of the interview or signing a physical consent form on the day of the interview. All interviews were audio-recorded on two devices (Zoom recording, phone or Dictaphone) as a failsafe against file corruption and were uploaded to a secure google drive account directly after each interview and were subsequently deleted from the relevant devices. The first author began each interview with a couple of minutes of problem-free talk in order to make the participant more comfortable and build a rapport. The interview then focused on some background information about the participant and their family member (including their demographic and clinical details), before moving to discuss their family member’s diagnosis, their relationship with them and any stigma experienced by either party due to the diagnosis. The interview schedule was specifically developed for the current study by the first author [See Supplementary File 1] and refined through feedback and revisions from the second author. Data Analysis Data analysis was conducted using Braun and Clarke’s [34, 35] method for reflexive thematic analysis. Reflexive thematic analysis emphasizes the researcher’s active role in theme development through analytic ‘work’ and acknowledges that themes are actively created by the researcher through the analytic process and subjectivity [35]. It involves reflective and thoughtful engagement with the data and the analytic process. Themes are generated this way to allow for development of a richer, more nuanced reading of the data [35]. This method was used as a structured guide for analysis in order to identify patterns (themes) that emerged from the data which allows for a rich description of the data set. This analysis involved six steps: de-identifying the transcript and familiarising yourself with the data; generating initial codes; searching for themes; reviewing themes; defining and naming themes; producing the report. During the transcription process, the first author ensured any potential identifiable information was de-identified by redacting any names of individuals spoken about and redacting information on any identifiable places. In total, there was six and a half hours of audio transcribed. Once the first author became familiar with the data, the process of descriptive coding was initiated. This process involved completing initial codes of the data. This was then further developed by searching for, reviewing and defining themes within the codes. The second author was involved at each stage of the process to ensure accuracy, cohesion and reduce the risk of bias. According to Lincoln & Guba’s [36, 37] criteria for ensuring trustworthiness in qualitative research, the following steps were taken: credibility was ensured through frequent debriefing sessions with the second author where they ensured that the quotes and themes reflected the sample and research questions based on their knowledge of the subject area; dependability was ensured through these discussions in order to reduce the risk of implicit bias and ensure that the findings were consistent and could be repeated; confirmability was also ensured through discussion with the second author ensuring the findings weren’t affected by researcher bias, motivation or interest and by forming an audit trail of the decision-making process from discussions with the second author which allowed for the refinement of themes for the final analysis; finally, the results of this research can be applied to other stigmatised illnesses (e.g. HPV-related cancers) which allows for transferability and external validity to other contexts. All transcripts were coded using NVivo, with any irrelevant information taken out. Relevant quotations were used to illustrate themes within the data. The research team arranged regular meetings to discuss the progress. Reflexivity As the first author has personal experience with a family member having a lung cancer diagnosis, she took steps to mitigate the risk of bias. In particular, the research team arranged regular meetings and the second author oversaw each stage of data analysis to check for bias. Reflexive journaling was also completed for the first author to check bias throughout the analysis process. Furthermore, additional steps were put in place with the second author in supervision and debriefing following interviews to ensure the first author’s wellbeing. Results The first author conducted 8 interviews. Of these participants, their age groups ranged from 20-29 to 60-69 and the sample included two males and six females. For further information on demographic characteristics of participants, please see Table 1 below. Table 1 Participant demographic characteristics ID Family Member Type of Cancer Cancer Stage Initial Diagnosis Treatments Person with Cancer Bereaved or Alive Participant Age Person with Cancer’s Age Participant Smoking History Person with Cancer’s Smoking History Julie Father Non-Small Cell Lung Cancer, Adenocarcinoma Stage 4 September 2024 Targeted therapy, Bone strengthener Alive 20-29 60-69 Not specified Non-smoker Susan Mother Non-Small Cell Lung Cancer Stage 4 August 2019 Immunotherapy, Chemotherapy, Radiation Bereaved 30-39 60-69 Past smoker Past smoker Jane Husband Type unspecified, Stage 3 Stage 3 April 2019 Recurrence 2021 Lung resection, Chemo, Radiation, Immunotherapy Alive 50-59 50-59 Past smoker Past smoker Gloria Brother Small Cell Lung Cancer Stage 4 August 2023 Chemo, immunotherapy, radiotherapy Bereaved 60-69 70-79 Not specified Past smoker Dean Father Non-Small Cell Lung Cancer, Stage 2 April 2022 Radiation Bereaved 20-29 70-79 Smoker Smoker Annette Husband Non-Small Cell Lung Cancer Stage 2 April 2022 Radiation Bereaved 60-69 70-79 Smoker Smoker Paul Mother Type not specified Stage not specified November 2021 No treatment Bereaved Not specified 70-79 Non-smoker Smoker Bernadette Husband Non-Small Cell Lung Cancer - Adenocarcinoma Stage 4 September 2023 Chemotherapy Bereaved 40-49 40-49 Non-smoker Non-smoker Note . IDs provided are pseudonyms The present study identified five themes relating to lung cancer stigma: Curiosity, or blame? Stereotypical questions about smoking behaviours and its impact, Discrimination and unfair treatment from healthcare providers, Feeling judged by association, Changing cultural and public views of smoking fuels stigma, Cognitive strategies for managing and resisting stigma. Participants identified a wide range of sources of stigma coming from family, friends, healthcare professionals and society. In the following sections, ellipses have been put in square brackets where quotes were contracted and, where context was needed for the quotations, further contextual information has been placed in square brackets. “I could feel my blood boiling”: Curiosity, or blame? Stereotypical questions about smoking behaviours and their impact All participants confirmed that, at some point, both themselves and their loved ones had been asked about their loved one’s smoking history. Julie (father, alive) indicated: “There were certain people as well [where] you just sort of knew that question [would be asked] […] I did have one friend that was like, “oh, was he a smoker?” I got quite defensive ‘cause it was that thing where it's like assuming that people who did smoke also deserve [lung cancer]. Like people have this thought that like “oh, well you know.. He was a smoker,” but, yeah, he wasn't. But I was like, “why does that have anything to do with it?” […] We've talked about it [as a family] and it's like, “oh my god, I'm sick of people asking me [does my father] smoke””. Furthermore, Gloria (brother, bereaved) indicated similar experiences, highlighting that it is often the first question people ask: “They [neighbours] didn't even know [my brother] was sick because I'd been missing for so long. And I just told them that I was just coming from the hospital and that [my brother] had died, they didn't even know he was sick and [they] said, “oh, what happened?” And I said, “he had lung cancer”. And the first question was, “did he smoke?”… before there was, “oh, I'm sorry””. Susan (mother, bereaved) expressed how stigma was experienced both towards her mother and herself from within the family and from other members of her social circle: “A lot of people I’d say even in the family would have been like “aw jaysus, [mother’s name], you should have quit smoking a long time ago.” There was that and, even now, if somebody had said to me “what happened to your mam?” and you said, “it was lung cancer” it would be “aw well, she was a smoker, was she?” You know there’s that kind of stigma to it. […] Now, a friend of hers would say “I suppose you should have given up the cigarettes before it happened. Look what's after happening now. It doesn't matter how long you're on them. Or how long your off them. It's going to get you in the end.” You know, that kind of stuff.” Additionally, Annette (husband, bereaved) also mentioned that members of the family would make comments regarding both her and her husband’s smoking habits: “You do get people all right that won’t want to sit anyone near you, which I have one son that will keep his distance (laughs). If you are smoking, you know. I know, he has often said that “they'll kill you; they'll kill you.” And said it to his father as well.” In terms of the impact that the stigma can have, Susan (mother, bereaved) indicated that smoking stigma regarding lung cancer can leave the individual with lung cancer feeling at fault and can cause internalised stigma: “You’re made to feel guilty. You know, it's like, “oh, you smoked, well, you know, what do you expect?” kind of thing. There is not as much compassion around it… around the whole lung cancer in general it's just like -[if] somebody's got breast cancer, bowel cancer, whatever, I think there's more compassion around those as such. [People might say] “oh you poor thing” whereas [with] lung cancer, it’s “did you smoke?”, “yeah”, “Oh, right. Okay. Well.” And that's kind of it…It's kind of like, “oh, it's your own fault””. Jane (husband, alive) also described the negative effect it has on her personally: “I got quite annoyed with a few people... You know, I could feel my blood boiling. It's like people I work with and they obviously can't… I just can’t explode on them but it’s just like, “really?””. “She’s going to die anyway”: Discrimination and unfair treatment from healthcare providers. Some participants indicated that their family members experienced judgemental attitudes, unfair treatment and a lack of information from healthcare professionals regarding their loved one’s lung cancer. Jane (husband, alive) indicated: “ The only thing with the lung consultant, [my husband] was in with him one day and I don't know where he was… But he came back smelling of smoke and he said the guy just got so cross and angry with him and he was like, “I wasn't smoking”. It was obviously somebody smoking near him or whatever. […] Do you [know] when you stand near somebody and you kind of come back and you're the one who smells of it? […] Yeah, he was getting quite cross with him. He was like, “were you smoking?” And, you know, he's like, “no, I wasn't. It was [someone else outside]””. Another participant perceived that the hospital staff saw lung cancer as a death sentence and left her mother in bed without adequate care. Susan (mother, bereaved) stated: “She was resting in bed for 6 weeks you know they basically had given her a life sentence anyway […] They just kind of left her there, she ended up getting a blood clot in the lung… It was absolutely ridiculous […] She walked into that hospital and from there she had to come and live in my house […] So, I think you know they knew she had lung cancer so they were just like “ah she’s gonna die anyway” […] you know that kind of way, which was a bit hard”. Another participant and their loved one experienced issues with accessing treatments and receiving adequate information from healthcare providers. Jane (husband, alive) stated: Yeah, they were putting it off for the first while, it was like, “oh, the [next scan is in] six months.” And I was like “that's a bit too far… you know, can we not get one sooner?” So, the first year was… It was a matter of running after them sometimes or […] You have to advocate for yourself, almost. To get them to do it. […] Because even it's the same with the consultants you kind of have to know the questions to ask them because they're not they're not very forthcoming with [information]. Like, we had to ask what stage he was at… I don't think they would have told us otherwise.” “You feel like you have a neon light over your head”: Feeling judged by association Participants spoke about the difficulties that their loved one’s diagnosis had on them through feeling like they were the center of attention, feeling judged for smoking, losing friendships and fighting with quiet judgments from society. For instance, Bernadette (bereaved) felt conscious of the diagnosis and worried what people would say when they found out her husband had lung cancer: “You feel like you have a neon light over your head… This is the way I felt when he was diagnosed. It's like, “oh my god, everyone’s going to think” [sic] and “oh, there’s [her husband] and he has lung cancer.” It’s just such an unusual cancer for a young person to get. And I was like, “oh my god”…. I just sorta felt like you know, it was drawing attention to us. Like it was such a different type of cancer, or you know, something that you wouldn’t usually see in a young person […] And I’d be like, I was like, even thinking at the time like “oh my god… what are people going to say?”… I do remember feeling like that at the time.” Additionally, Jane (husband, alive) explained the difficulties of dealing with judgements from society regarding her husband’s diagnosis: “He's just exhausted… He could do something one day and he might take another three days to get over it. He gets breathless very easy easily, like we noticed when we're out and about, you know, if he- if we're doing something too, if he walks too energetically, he's like (GASPING) you know . You just immediately got people looking at him because he’s quite a heavy guy as well… There’s loads [of people] just looking at him kind of going, you know, “he's obviously very unfit or something.” It's just one of the invisible disabilities as well really, isn't it? […] And, you know, when people see him huffing and puffing or he is sitting down in a disabled seat on the bus or something and it's just like they're looking at him kind of like “really?” And he's got this huge scar on his back from the operation and it's just like, I feel like taking it out and showing people… “this is what's wrong with him.”” Furthermore, Jane (husband, alive) explained how the diagnosis impacted friendships due to a lack of understanding: “I think, yeah, it has spoiled some relationships as well. Friend wise and stuff, they're not as… they were there in the beginning but now they've dwindled off and it's kind of- you're left on your own a bit as well. To get on with things… […] I think that [because] he's not actively going through anything I think [it] is just [harder for them to understand] and then there's the fact as well that he’s not able to go out as much as he used to. If we do [go out], we can’t stay out as long because he gets so tired, and it's like, friends, yeah I think we're seen as the boring party poopers kind of thing, because we did have people over for one of his birthdays a couple of years ago, but we gave them a time limit, that kind of “please leave by half nine” kind of thing (laughs) […] They don't understand the way the treatment can affect you and it isn't just the person as well”. Another participant commented on the fact that family members had brought up her smoking habits to her after the diagnosis. Annette (husband, bereaved): “No, but what I have found is they’d probably advise me to give up the cigarettes… That you [participant] should try and give them up. […] I know they probably are worried. Yes, I can understand that. But, at the same time, like, you can advise somebody to give them up without having to stigmatise them or.. Tell them they’re gonna kill you. We all know that… my son would have said that to me, “you should give them up they’re bad for your health”, but I know he’s not saying it in a bad way probably, but he's probably saying, “well if I [son] could do it, you could do it””. “It seems to only apply to lung cancer”: Changing cultural and public views of smoking fuels stigma Participants commented on how the cultural views of smoking has changed over the last 20-30 years, indicating that it used to be widely accepted to smoke, with the media portraying it as something desirable. Participants noted how this view has changed in more recent years and has become viewed as a negative health behaviour that is stigmatised. Susan (mother, bereaved) commented: “Years ago, they were throwing cigarettes at you, they weren't telling you about the dangers of it and it was when it was too late, it was “oh you can’t smoke in pubs and restaurants anymore” and “this is what’s gonna happen to you” and “now, we’ll stick the labels on”. But back then there was none of that. It was “here”.. A packet of cigarettes were cheap (mutters).. And if you didn’t have a cigarette in your hand, you weren’t cool you know? So, you can’t throw them at people and then be like “ah sure, you should have known better” […] It was completely different, I mean everybody, even on adverts, people were sitting there smoking, even if you’d watched the soaps, in Coronation street, sure they're all sitting there having a cigarette. […] It was completely normal. Sure, you’d be travelling in the car and you’d have your mam, your granny, your aunty and uncle they’d be all hotboxing the car with you in it…you know, there was no legislation, there was nothing .. there was nothing about it.” Additionally, Paul (mother, bereaved) added to this, indicating that even doctors used to smoke when his mother was growing up and smoking was not perceived as such a negative health behaviour years at that time, but that those who still smoke are stigmatised even though they were not aware of the negative effects of it when they started smoking: “When she was younger, and people smoked, it was seen as.. something good to do. You know, you would have seen doctors at the time smoke, other people smoking, and it wasn't seen in that negative light that we see in the past, maybe, 20, 30 years… I think we say, for example, older people, yes. You know, I think that it’s probably very difficult to give up smoking. I do think that it's [difficult]. But, as I said, yeah, I don't blame them on smoking, if you know what I mean? They made a life choice… at the time [when they started smoking], they probably weren't aware of [the negative effects it can have].” Participants indicated that the change in cultural views has led to individuals with lung cancer being stigmatised and blamed more than those with other cancers. For example, Bernadette (husband, bereaved) perceived that lung cancer is judged more harshly compared to other cancers, particularly when it comes to smoking behaviours: “I think with the lung cancer, it was nearly... You look for the cause, like, there has to be a reason he got that. Whereas…. Obviously, there's a reason why everybody gets something, but I feel like, [with] other cancers, you don't tend to, maybe think it’s, not that the person [who] is at fault, but you don't be like, “oh god, how did you get that now?”. If someone had bowel cancer, you don't be like “oh, does she have a real bad diet” or that, you know? Nobody ever says that.” Other participants indicated that no one looks past smoking behaviours and never ask about any other factors which may have contributed to the cancer. Gloria (brother, bereaved) commented: “And you know, it seems to only apply to lung cancer. You know… It’s not something you ask [for other cancers]… And that it is just the smoking and not the fumes or anything else that could have caused it.” One participant commented on how media has added to the stigma around lung cancer and has impacted the way people view lung cancer and smoking. Julie (father, alive) stated: “I don't know, it’s probably just media, like ER, opened [up] this preconceived bias or something [towards smoking and its link with lung cancer]. And that's probably why as well it was like [a] huge shock to us [because my father never smoked] because of that sort of influence of like seeing the smoking things over the years.” This change in cultural views hasn’t been met with a matched understanding of smoking as an addiction. One participant indicated that smoking stigma will always be there as there is less of a focus on smoking as an addiction, but as a negative health behaviour. Dean (father, bereaved) said: “There's always going to be stigma for smokers, because people who don't smoke think they're better than those who do smoke [even though smoking is an addiction], which is just immorally wrong. [sic] […] All that's going to happen [when being judged for smoking] is they're gonna suffer in silence… There has to be more compassion for people who are stuck in a place where they're not able to make the choice that they maybe want to make or they don't want to make, but compassion is the most important thing, so, if you're not going to be compassionate, then you can't advocate [for] any cause. Because all you're doing then is bullying.” “I’m more proud of the things that she did do, as opposed to the things that she didn't do”: Cognitive strategies for managing and resisting stigma Participants commented on how themselves and their family members learnt ways to manage the external stigma associated with lung cancer. Julie (father, alive) indicated that she noticed her father prefixing conversations with the fact that he didn’t smoke, as he anticipated it being asked: “But like, I noticed that, even when he was telling people, that he felt the need to say, “oh, I've never smoked.” Which is interesting because like… you wouldn't say that for any other cancer really. But I know that, when he was telling people himself, he would always preface with that [that he wasn’t a smoker]... He was waiting for the question almost so he would like to say it before people would ask him, if that makes sense”. Some participants also indicated that they didn’t take offense to people asking whether their loved one smoked and cognitively reframed potentially stigmatising questions as curiosity rather than judgement. Dean (father, bereaved) indicated that he never saw it as stigma, but as curiosity, noting that he also would ask the question out of curiosity: “Oh yeah. Not in a judgemental way, but they’d ask, “did he smoke?.” Well, I guess that does kind of tell you exactly what they're thinking. That would be a very popular and common thing to hear. But I never actually understood that that was maybe like a generalisation of the causes of it yeah. I mean, it makes sense, but I just never really, I just thought they asked that just to ask that […] Well see, I'd be the kind of person to question it like that, but I also wouldn't be judging them. I'd just be curious. Maybe let's say I was also a smoker and I'm kind of like wondering, okay, is that what it was? I probably believe the best in people and hope that if they did ask that question, they're not stigmatising. They're just generally curious.” Annette (husband, bereaved) indicated the impact stigma can have on someone who has lung cancer and is a smoker, and resisted stigma through rejecting blame for individuals who chose to continue to smoke and defended her loved one for this choice: “What's the point in having stigma at that stage in your life? The cancer's already there. Smoking is not going to make any difference really at that stage. You know, that's the way I look at it. You're adding more to their suffering. The shock of what you’ve got is enough. And at the end of the day, if a person is terminally ill, they should be allowed to live their life [to] the best they can and enjoy what last bit they have.” One participant indicated that he doesn’t feel stigmatised by others due to his mother’s diagnosis and rejects any feelings of shame. He has accepted the choices his mother made and remembers her with pride. Paul (mother, bereaved) stated: “I don't think I'm stigmatized… Like, I suppose, you know, stigma sometimes can bring about shame, and I…. I'm not ashamed that my mam died of lung cancer. I'm not ashamed that she died of lung cancer and was a smoker, if that makes sense? Because I’m more proud of the things that she did do, as opposed to the things that she didn't do.” Discussion To the authors’ knowledge, this is the first study to examine family members’ experiences of lung cancer stigma and their perspectives of their loved ones’ experiences. The findings indicate that lung cancer family members witnessed their loved ones experiencing stigma from other family members, friends, healthcare providers and society members. Additionally, family members experienced stigma by association. This study identified five themes: Curiosity, or blame? Stereotypical questions about smoking behaviours and its impact, Discrimination and unfair treatment from healthcare providers, Feeling judged by association, Changing cultural and public views of smoking fuels stigma, Cognitive strategies for managing and resisting stigma. An important but perhaps unsurprising finding was how prominent the question of “Did they smoke?” was asked for both participants and their loved ones when discussing the diagnosis across a range of groups. This finding resonates with previous research [16] and amplifies the fact that society views smoking as the primary cause of lung cancer in line with media communications. Participants also reported blame from family and friends towards their loved one, particularly for smoking-related behaviours, and this reflects previous studies [4, 13, 14]. This may lead to relationship distress, reduced communication and conflict [23, 27, 28]. Importantly, stereotypical questioning was experienced by both smokers and non-smokers, leading us to believe that this is a common experience for anyone diagnosed with lung cancer, reflecting previous research [4, 21, McCann et al., 2025, manuscript under review]. Participants noted how this stigma resulted in internalised feelings such as guilt and shame for their loved ones, which resonates with previous research showing that attribution of blame can leave individuals feeling stigmatised [14, 15, 20]. Other research has found that the impact of this can ultimately lead those with lung cancer to conceal their diagnosis due to shame or fear of judgement [5, 15, 20] or delay medical help seeking behaviours, resulting in poorer health outcomes [10, 13, 14]. Psychological consequences of this may include depression [38], lower quality of life [17] and higher levels of anxiety and distress [39, 40] for those with lung cancer. Participants reported how this emotionally affected them as family members also, resulting in anger, frustration and defensiveness. This resonates with research on mental health stigma, where family members experienced a high level of emotional burden due to the associated discrimination [31]. These findings are important as they give us new insights into the impact of lung cancer stigma from the family members perspective, and how the negative effects of this stigma can affect families just as deeply. An important finding was how participants recalled potential discrimination, judgemental attitudes and inadequate communication towards their loved ones from healthcare providers. Participants described how healthcare providers assumed smoking history and saw lung cancer as a death sentence, leading to inadequate care. This led to higher levels of perceived stigma for both members. This finding supports previous research which found that general practitioners and nurses held more blame towards individuals with lung cancer, even when individuals were non-smokers [14, 41, 42]. This finding is important as poor provider communication is consistently associated with higher stigma [43, 44] and may lead to difficulties with treatment adherence, further emotional challenges such as anxiety or mistrust with the healthcare provider and feeling a lack of empathy. This shows the negative effects of poor communication between healthcare providers and individuals affected by lung cancer. Another key theme was that participants reported stigma by association. Participants described feeling judged by family members and society and experiencing the loss of friendships. This finding reflects previous research in other stigmatised health conditions such as HIV [29, 30]. The finding that one participant felt the diagnosis was unusual and that it drew attention to her family is similar to previous research on mental health stigma indicating that family stigma is often due to a degree of unusualness in the family [30, 31]. This can cause internal stigma and emotional consequences such as fear, worry or concern [30, 31]. The finding that participants felt judged by society also reflects research on mental health stigma highlighting the social consequences of stigma by association, such as discrimination, negative treatment and feeling a family burden [30]. Furthermore, the loss of friendships reported resonates with previous research on mental health stigma, highlighting the interpersonal consequences such as social exclusion or isolation due to a stigmatised illness [29, 30, 31]. Finally, the finding that participants felt judged by other family members regarding their own smoking habits even when they were not ill is interesting and suggests that participants experience externalised stigma from other family members due to shared behaviours. These findings relate to and extend upon previous research on caregivers of individuals with lung cancer [32] showing that family members also experience stigma by association. They also demonstrate that family members also carry the social burden of a lung cancer diagnosis and emphasises that the whole family experiences lung cancer stigma. These findings highlight the need for support for family members to help navigate lung cancer stigma. A novel finding was that participants commented on how cultural views and public attitudes towards smoking have changed and this has fuelled the stigma and lack of compassion towards lung cancer. Participants recalled how smoking was once widely accepted, even among doctors and celebrities, which has been highlighted in previous research [45]. However, it is now a negative health behaviour and those who smoke are judged for their actions, rather than being met with compassion and understanding. Participants noted how there is less compassion for individuals with lung cancer, but instead survivors are met with judgement and blame due to a lack of understanding of the causes of cancer. This is due to concerns about media portrayals emphasising lung cancer as directly related to smoking. Considering these concerns, there is a need for more specific advertisements depicting more accurate information; e.g. emphasising smoking as a risk factor for, rather than cause of, lung cancer. Interestingly, participants described using a range of cognitive strategies to cope with stigma. One mentioned how her loved one pre-emptively identified as a non-smoker when disclosing his diagnosis to avoid blame, as he anticipated this stereotypical question. This shows that stigma can be an anticipated response in relation to societal beliefs [7]. Another strategy employed by two participants was cognitive reframing of potentially stigmatising questions. Rather than taking offense when others asked about their loved one’s smoking history, they chose to interpret these questions as curiosity rather than blame. Another two participants discussed how they resist the stigma directed at individuals who smoke and have lung cancer by rejecting blame on individuals for their personal choices, emphasizing that stigma only adds to their suffering. These findings demonstrate how individuals can actively resist internalising stigma, reflecting elements of Cognitive Behavioural Therapy (CBT) such as defusion and values-guided actions [46]. These techniques may encourage individuals to recognise and step back from negative thoughts and accept painful emotions associated with stigma. The findings from this study suggest that both survivors and family members may already be using these techniques to cope with stigma. This offers valuable insights for developing targeted interventions to support individuals affected by lung cancer. Implication for Lung Cancer Survivors These findings have several implications for individuals with lung cancer and their families. The strategies identified in this study can inform future interventions focused on coping with stigma. Communication skills training could be used to help survivors and family members address stigmatising comments or proactively bring up smoking in advance of people asking. Additionally, therapeutic interventions such as Acceptance and Commitment Therapy (ACT), Cognitive Behavioural Therapy (CBT) and Mindfulness-Based Stress Reduction (MBSR) have been found to have promising results in reducing stigma outcomes for lung cancer survivors through helping individuals accept difficult emotions, challenge internalised stigma, and improve emotional wellbeing [46–48]. However, further work is needed to include randomised controlled trials and longitudinal studies to better evaluate their efficacy for survivors. Considering that family members have been excluded from many relevant interventions available for cancer survivors,, offering these interventions to family members and incorporating their perspectives and coping strategies is essential for understanding how stigma impacts the whole family and will help identify for family members to cope with stigma. To address stigma within families, interventions focusing on communications training to encourage less blame and more compassion towards the survivor may be helpful. Previous interventions using psychoeducation and CBT focusing on improving communication and coping skills in families dealing with cancer have found significant results [49]. Overall, they found less negativity, increased communication, reduced psychological distress and avoidance, lower depression and greater relationship satisfaction compared to control groups [49]. However, they only focused on couples or families with children with cancer and did not examine other familial relationships. Additionally, these interventions were only a once-off and focused broadly on different cancer types, none of which were lung cancer. However, they show promise in increasing communication, improving relationship conflict and lowering depression and therefore should be evaluated in the context of lung cancer for the survivor and family members. Future work focusing on educational campaigns aimed at reducing negative public perceptions of lung cancer need to be widely implemented to tackle lung cancer stigma. There has been a few initiatives which directly targeted public stigma around lung cancer. Two campaigns which were implemented were Lung Cancer Europe’s (LuCE) 2024 awareness campaign Get Educated and LUNGevity’s 2024 campaign Anyone with Lungs Can Get Lung Cancer. These campaigns aimed to educate the public about the reality of living with lung cancer, educate people about the risk factors and show that non-smokers are also affected by lung cancer in order to reduce the stigma attached to it. Although promising, the effectiveness of these campaigns has not yet been established. Future campaigns should take into account the findings of the current study and should also explicitly include family member experiences, highlighting the emotional and social challenges they face. This could be achieved through a focus on sharing both lung cancer survivors and family members’ stories in order to create awareness and break down stereotypes. Additionally, future work needs to focus on providing training for healthcare providers in order to avoid judgemental conversations and to encourage empathetic conversations. Guidelines from the International Association for the Study of Lung Cancer in 2021 [50] and the National Comprehensive Cancer Network in 2025 [51] emphasizes the need to promote judgement-free, bias-free, person-first language, where individuals should not be blamed for their disease or made feel stigmatised by past or current behaviours. These guidelines need to be implemented in healthcare settings through training and protocols in order to encourage the use of this person-first language when dealing with lung cancer survivors and their families. Healthcare providers must also aim to provide lung cancer survivors and their families with adequate information regarding their diagnosis and equal treatment, as this has been reported both in the current study and previous studies as something that is lacking from healthcare providers. While one intervention focusing on empathic communication skills for healthcare providers showed increased participant satisfaction with communication, it had no effect on stigma levels or perceived empathy [43]. This may be due to the fact that it only included one training session. Furthermore, this intervention only focused on lung cancer survivors and didn’t include family members, and therefore further interventions are needed to include both family members’ perspective of communication skills from healthcare providers. Finally, access to mental health services should be available for survivors and their family members to ensure that they can access supports if they need help coping with stigma. Peer support groups should be offered for both members which can offer a safe space for them to speak without fear of judgement, with individuals in similar situations, as participants reported a lack of support from friends and this underscores the need for peer support groups. Cancer support organisations could also create more awareness of the supports available for survivors but also for family members. Since many family members are also the primary caregiver of their loved ones throughout their cancer journey, it is therefore essential to look after their mental health and wellbeing to ensure they do not get burnt out and that they can provide adequate care and emotional support for their loved ones. Strengths & Limitations There are a number of strengths that should be considered when interpreting the findings of the present study. This study is the first study to the authors’ knowledge which has examined family members’ experiences and perspectives of lung cancer stigma. Another strength of this study is that it included both smokers and non-smokers in terms of both the participants and those with lung cancer, ensuring that different voices were represented herein. A final strength of this study is the potential value of the research for other cancers with potential stigma such as HPV-related cancers or liver cancers. In terms of limitations, in spite of a lengthy and engaged recruitment drive across a six-month period involving multiple partner organisations in Ireland, this study only managed to recruit eight participants, which may be regarded as a small sample size even for a qualitative study of this nature. Of the eight participants, there was some variation in familial relationships, with four participants who had a parent with lung cancer, three who had a husband with lung cancer and one who had a sibling with lung cancer. However, there was a lack of other familial relationships, such as wives or children, and this may have led to a biased sample. Additionally, there was some variation in the timing of the diagnosis, with the timeframe varying from 2019–2024. Within this timeframe, some participants were bereaved and this may have biased the sample. Another limitation of this study was that the majority of interviews (five) were conducted online through Zoom or over the phone. This may have resulted in a less personal interview through the loss of non-verbal communication. Despite this, the interviews contained rich and detailed participant accounts, suggesting that these limitations did not adversely impact the quality of the research. Conclusion In conclusion, this study identified five themes relating to lung cancer stigma: Curiosity, or blame? Stereotypical questions about smoking behaviours and its impact, Discrimination and unfair treatment from healthcare providers, Feeling judged by association, Changing cultural and public views of smoking fuels stigma, Cognitive strategies for managing and resisting stigma. These novel findings offer insight into how stigma affects both survivors and their family members. Family members perceived externalised stigma from relatives, friends, healthcare providers and society towards their loved one. Common forms of stigma included persistent questioning about smoking behaviours, blame directed at smokers, and discrimination from healthcare providers. Many participants also described stigma by association through feeling worried about others’ reactions, isolated and judged by other relatives and society members. Participants highlighted that lung cancer stigma has led to internalised stigma, such as guilt and shame for their loved ones, and led them to experience anger, defensiveness, and frustration. In light of these findings, there is a clear need for coordinated public campaigns to reduce societal stigma. Interventions should include empathic communication training for healthcare providers, communication skills training for families and psychosocial support for both survivors and their families. Future research should further examine family members’ experiences and perspectives in order to gain a broader understanding of lung cancer stigma. Declarations Conflicts of Interest/Competing Interests: The authors declare that they have no conflict of interest to report. Ethics Approval: This study received full ethical approval from the Psychology Ethics Committee, Dublin City University (DCUPEC_2025_157). Procedures and practices carried out as part of the present research were at all times in line with the ethical standards of the pertinent institutional research ethics committees and the 1964 Helsinki declaration and its later amendments. Consent to Participate: Informed consent for participation was received from all participants prior to partaking in the research (including consent to provide their demographic and clinical details). Consent for Publication: Informed consent was received from all participants prior to partaking in the research regarding the potential for publication of pseudonymised data in academic journals or conferences. Funding: This study was self-funded. No funding was received for conducting this study. Author Contribution S.McC.: Conceptualisation, data curation and design, data analysis and interpretation, original manuscript preparation, writing, review and editing. S.D.: Conceptualisation, data curation and design, supervision, interpretation, manuscript review and editing. Acknowledgement We would like to thank all of our participants for partaking in this study. Additionally, we would like to thank Breakthrough Cancer, the Irish Cancer Society, the Marie Keating Foundation, the Irish Lung Cancer Community and various groups such as Cancer Care West, Purple House, ARC, Family Carers Ireland and Care Alliance Ireland who helped us with our recruitment process. Data Availability Any NVivo material representing the thematic analysis process at different stages of coding can be requested from the first author. References Bray F, Laversanne M, Sung H, Ferlay J, Siegel RS, Soerjomataram I, et al. 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Oncology care provider training in empathic communication skills to reduce lung cancer stigma. Chest . 2021;159(5):2040–2049. https://doi.org/10.1016/j.chest.2020.11.024 Shen MJ, Hamann HA, Thomas AJ, Ostroff JS. Association between patient-provider communication and lung cancer stigma. Support Care Cancer . 2016;24(5):2093–2099. https://doi.org/10.1007/s00520-015-3014-0 Cummings KM, Proctor RN. The changing public image of smoking in the United States: 1964–2014. Cancer Epidemiol Biomarkers Prev . 2014;23(1):32–36. https://doi.org/10.1158/1055-9965.EPI-13-0798 Chambers SK, Morris BA, Clutton S, Foley E, Giles L, Schofield P, et al. Psychological wellness and health-related stigma: A pilot study of an acceptance-focused cognitive behavioural intervention for people with lung cancer. Eur J Cancer Care (Engl) . 2015;24(1):60–70. https://doi.org/10.1111/ecc.12221 Kaplan DM, Hamann HA, Price SN, Williamson TJ, Ver Hoeve ES, McConnell MH, et al. Developing an ACT-based intervention to address lung cancer stigma: Stakeholder recommendations and feasibility testing in two NCI-designated cancer centers. J Psychosoc Oncol . 2023;41(1):59–75. https://doi.org/10.1080/07347332.2022.2033377 Tian X, Liao Z, Yi L, Tang L, Chen G, Jiménez Herrera MF. Efficacy and mechanisms of 4-week MBSR on psychological distress in lung cancer patients: A single-center, single-blind, longitudinal, randomized controlled trial. Asia Pac J Oncol Nurs . 2022;10(1):100151. https://doi.org/10.1016/j.apjon.2022.100151 Shields CG, Finley MA, Chawla N, Meadors WP. Couple and family interventions in health problems. J Marital Fam Ther . 2012;38(1):265–280. https://doi.org/10.1111/j.1752-0606.2011.00269.x International Association for the Study of Lung Cancer. Language Guide [Internet]. 2021 [cited 2025, July 6]. Available from https://www.iaslc.org/IASLCLanguageGuide . National Comprehensive Cancer Network. NCCN language guidance: Sensitive, respectful, and inclusive language for NCCN publications. [Internet]. 2025 [cited 2025, July 6]. Available from https://www.nccn.org/docs/default-source/about/nccn-guidance-on-inclusive-language.pdf?sfvrsn=53c8c78f_2 . Additional Declarations No competing interests reported. Supplementary Files YoufeellikeyouhaveaneonlightoveryourheadSupplementaryFileInterviewSchedule.docx Cite Share Download PDF Status: Published Journal Publication published 31 Jan, 2026 Read the published version in BMC Psychology → Version 1 posted Editorial decision: Revision requested 06 Nov, 2025 Reviews received at journal 15 Oct, 2025 Reviews received at journal 15 Oct, 2025 Reviewers agreed at journal 10 Oct, 2025 Reviews received at journal 10 Oct, 2025 Reviewers agreed at journal 02 Oct, 2025 Reviewers agreed at journal 27 Sep, 2025 Reviewers agreed at journal 26 Sep, 2025 Reviewers agreed at journal 26 Sep, 2025 Reviewers invited by journal 26 Sep, 2025 Editor assigned by journal 23 Sep, 2025 Editor invited by journal 08 Sep, 2025 Submission checks completed at journal 02 Sep, 2025 First submitted to journal 02 Sep, 2025 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. 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18:59:40","extension":"docx","order_by":0,"title":"","display":"","copyAsset":false,"role":"supplement","size":14956,"visible":true,"origin":"","legend":"","description":"","filename":"YoufeellikeyouhaveaneonlightoveryourheadSupplementaryFileInterviewSchedule.docx","url":"https://assets-eu.researchsquare.com/files/rs-7480697/v1/80804ad554cb37203f88fa50.docx"}],"financialInterests":"No competing interests reported.","formattedTitle":"“You feel like you have a neon light over your head ”: A Qualitative Study Examining the Experiences and Perspectives of Family Members regarding the Stigma of those Diagnosed with Lung Cancer","fulltext":[{"header":"Introduction","content":"\u003cp\u003eIn 2022, lung cancer was the most frequently reported cancer worldwide, with the global rate of new diagnoses being 2.5\u0026nbsp;million cases [1]. Lung cancer has the highest death rate of all cancers worldwide, with an estimated 1.8\u0026nbsp;million deaths in 2020 [2]. Smoking is recognised as the leading cause of lung cancer [3]. Unfortunately, this has led to a stigma surrounding lung cancer, which is quite pervasive in society, with many viewing people with lung cancer as being responsible for their illness due to smoking being seen as a controllable behaviour [4, 5]. Lung cancer stigma can lead to a range of negative impacts on all those affected by lung cancer, even though a substantial proportion of lung cancer survivors have never smoked. A recent review found that, worldwide, approximately 20% of men with lung cancer and up to 50% of females with adenocarcinoma are non-smokers, indicating that the number of non-smokers receiving a diagnosis is higher than previously thought [6].\u003c/p\u003e\u003cp\u003eAccording to Goffman [7], stigma is defined as an undesirable stereotype based upon an attribute, characteristic or behaviour which classifies others as different [8]. This can lead people to think that the individual affected is tainted or undesirable [5, 9\u0026ndash;11]. Stigma experiences can be felt (internalised) and/or enacted (externalised) [7\u0026ndash;9, 12]. Internalised stigma refers to an individuals\u0026rsquo; internal feelings of guilt, shame, regret or blame regarding their illness and a fear of discrimination from society [4, 12, 13]. Externalised stigma can take the form of perceived or enacted stigma [4, 14] which is the perception or experience of negative attitudes from others. Discrimination is defined as unfair or prejudicial treatment of individuals based on characteristics and is a common way that externalised stigma manifests for individuals with lung cancer [8\u0026ndash;12]. Externalised stigma can be experienced from different sources, including family members, friends, healthcare providers and society [4, 13].\u003c/p\u003e\u003cp\u003eIn line with attribution theory, health conditions are more stigmatised when people believe the individual\u0026rsquo;s behaviour is responsible for their ill health [12, 15, 16]. In the case of lung cancer, this can occur when people link actions such as smoking with the cause of the illness [14]. This has been evidenced in past research where individuals with lung cancer are often asked \u0026ldquo;Did you smoke?\u0026rdquo; after sharing their diagnosis [16]. Oftentimes, when hearing of someone\u0026rsquo;s lung cancer diagnosis, individuals overlook the numerous other factors which can contribute to it or misunderstand that smoking is a risk factor which interacts with one\u0026rsquo;s genes rather than a direct cause of lung cancer. This stigma may be amplified by lung cancers\u0026rsquo; high mortality rates, which lead many to see it as a death sentence [9].\u003c/p\u003e\u003cp\u003eMuch of the research to date in this area has examined the relationship between lung cancer stigma and smoking from the perspective of those with lung cancer. This research has found that lung cancer stigma has a significant impact on an individual\u0026rsquo;s psychological wellbeing and can cause greater distress, social isolation, poorer quality of life, anxiety and depression [11, 15, 17\u0026ndash;19]. Furthermore, the attribution of blame from stigma can leave individuals having internal feelings of shame or guilt, leading to concealment of their diagnosis from friends and family due to shame [20] or fear of judgement [4, 5, 14, 15]. Additionally, lung cancer stigma can cause individuals to delay medical help-seeking behaviours which results in later presentation of the disease and higher mortality rates [10, 13, 14]. Importantly, lung cancer stigma has been found to affect both smokers and never-smokers [21].\u003c/p\u003e\u003cp\u003eStudies have found mixed results regarding the amount of stigma experienced by smokers and non-smokers. Some studies found that those who currently smoke or have a history of smoking experience a higher degree of stigma compared to those who never smoked [22]. Specifically, individuals who have a history of smoking may experience a higher degree of guilt, isolation and embarrassment [23] and, in one study, the strongest predictor of self-blame was individuals believing that smoking was the cause of their cancer [19]. Additionally, a scoping review found that those with a smoking history specifically experienced a higher level of perceived stigma compared to non-smokers [15]. This blame from others is evident even after individuals quit smoking years before their diagnosis [5]. However, a more recent systematic review by the current authors found that 9 out of 11 included studies which examined stigma associations with smoking status reported no significant differences in stigma levels between smokers and non-smokers [McCann et al., 2025, manuscript under review]. Indeed, both smokers and non-smokers can report feelings of personal responsibility and regret relating to their diagnosis [4], highlighting that stigma affects individuals with and without a history of smoking.\u003c/p\u003e\u003cp\u003eFamily members are the most important source of support for people with lung cancer [24]. They are often the primary caregivers and play a vital role in the emotional and practical support of individuals with lung cancer [24]. Positive family support has been linked to better quality of life and psychological outcomes. The research on this subject that has included family members has primarily focused on how their feelings towards the diagnosis affects the level of care they give, and/or examining how it affected their relationship. Family members who blame their loved one for their diagnosis or for continuing smoking may also have higher levels of anger and less empathy towards them [25]. This can negatively impact the level of care they give [5] and is associated with higher depressive symptoms, distress and loneliness for both groups, reduced communication between them, and increased conflict and relationship distress [18, 23, 26, 27, 28]. Furthermore, some family members may even internalise blame themselves for the diagnosis, especially if they are also current or former smokers, and this may further negatively impact their relationship [23].\u003c/p\u003e\u003cp\u003eIn spite of the above findings, there is a dearth of in-depth qualitative research regarding how family members experience and respond to lung cancer stigma. Nonetheless, it is possible to draw inferences about how stigma could affect family members from similar research in other contexts, e.g. research examining stigma of family members of individuals with other illnesses such as mental health issues or HIV [29, 30]. This research emphasizes that stigma not only affects individuals with the health issues but can also affect family members who are associated with those individuals [29, 30]. An individual\u0026rsquo;s health condition can become a source of stigmatisation for the whole family [31]. This is known as \u0026ldquo;stigma by association\u0026rdquo; and can stem from family, friends, healthcare providers and society members [29, 31]. According to Park and Park [30], family members can themselves experience negative emotional, social and interpersonal consequences of stigma by association such as fear, anxiety, guilt, shame, discrimination, social exclusion or avoiding social relationships to avoid stigma [29, 30]. These consequences can lead to family members having a reduced quality of life, long term stress and burden [30, 31]. Importantly, for the person with chronic illness, stigma often results in inadequate medical support, discrimination or negative attitudes from healthcare providers [31]. Given these important findings from other contexts, it is imperative to explore this further in family members of individuals with lung cancer.\u003c/p\u003e\u003cp\u003eTo the authors\u0026rsquo; knowledge, there is no extant research explicitly examining the impact of lung cancer stigma on the family system. One study which examined the experiences of stigma for individuals with lung cancer and their caregivers (including some family members) found that both reported high levels of perceived stigma and psychological distress after the diagnosis [32]. They also found that caregivers experienced stigma by association from being members of the individual\u0026rsquo;s close network. However, this study only included caregivers broadly and did not specify whether caregivers were family members or hired caregivers and is therefore not comparable to what the current research aims to examine. As such, there is a clear lack of research examining the lived experience of familial stigma due to a lung cancer diagnosis and their perspective of their loved one\u0026rsquo;s experiences [10, 15, 32]. As outlined in a recent scoping review [15], exploring family members\u0026rsquo; perspectives is needed to gain a better understanding of how stigma affects lung cancer survivors and family members in order to develop supports which may help moderate stigma and improve quality of life for both the lung cancer survivor and their family members. Examining this subject through qualitative research also allows for an in-depth insight into how stigma affects family members in various ways through talking about their experiences in their own words and allows for richness of responses in order to identify important themes [32, 33]. Therefore, the current study sought to address these gaps by exploring the following questions:\u003c/p\u003e\u003cp\u003e\u003col\u003e\u003cspan\u003e\u003cli\u003e\u003cp\u003eFrom the family member\u0026rsquo;s perspective, what type of stigma do their loved one\u0026rsquo;s experience and what effect does this have on their loved one?\u003c/p\u003e\u003c/li\u003e\u003c/span\u003e\u003cspan\u003e\u003cli\u003e\u003cp\u003eDo family members experience stigma from others regarding their loved one\u0026rsquo;s diagnosis?\u003c/p\u003e\u003c/li\u003e\u003c/span\u003e\u003c/ol\u003e\u003c/p\u003e"},{"header":"Methodology","content":"\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e\u003ch2\u003eDesign\u003c/h2\u003e\u003cp\u003eA cross-sectional qualitative approach was used for the current study as this has been found to be valuable in the exploration of depth and richness of responses in under-explored areas [32]. Interviews allow for the discussion of sensitive issues such as stigma which can be a sensitive topic that is difficult to capture in a nuanced way in quantitative data [33]. Semi-structured interviews consisting of open-ended questions were used to explore the experiences and perspectives of lung cancer stigma from the perspective of family members of those with a diagnosis. This allowed for answers to be flexible in nature. Interviews were conducted over a five month period and analysis was completed over a two month period in 2025.\u003c/p\u003e\u003c/div\u003e\n\u003ch3\u003eParticipants \u0026 Recruitment\u003c/h3\u003e\n\u003cp\u003eA non-probability purposive sampling method was used to target family members of individuals with lung cancer, with the aim of capturing a range of familial relationships. Participants completed semi-structured interviews and were recruited based on a set of inclusion and exclusion criteria set out by the researchers. The inclusion criteria required that participants were over 18 years old, a family member of someone with a lung cancer diagnosis, or someone who had lost a family member due to lung cancer in the last 10 years and must have resided in Ireland. Participants were excluded if they were non-fluent English speakers, those who did not have full capacity to give consent and those who had been bereaved within the previous month to protect against any potential vulnerability following their loss.\u003c/p\u003e\u003cp\u003eRecruitment took place over a six month period from January to June 2025. A number of different avenues were used to recruit such as through contact with cancer organisations, social media, posters placed around university campuses and cancer support centres in Ireland and through snowball sampling. Cancer organisations such as Breakthrough Cancer, the Irish Cancer Society, the Marie Keating Foundation, the Irish Lung Cancer Community and various groups such as Cancer Care West, Purple House, ARC, Family Carers Ireland and Care Alliance Ireland were contacted to ask if they could share the study information. Emails were sent from both authors with a description of the study and recipients were asked if they could share the recruitment poster. The organisations obliged in sharing the recruitment poster through their social media platforms such as LinkedIn, Instagram and Facebook. Additionally, cancer support centers obliged in putting the poster up in physical spaces in their services such as waiting rooms. Recruitment also took place through posting advertisements on the first authors\u0026rsquo; personal social media platforms such as Facebook, Instagram and LinkedIn in order to engage with a wider range of participants. Additionally, snowball sampling was used by asking participants if they could share the poster with anyone who they thought may be eligible to take part. When a potential participant got in touch to flag their interest, the first author emailed them with additional information about the study in the form of the plain language statement and also sent a consent form for them to read.\u003c/p\u003e\n\u003ch3\u003eData Collection\u003c/h3\u003e\n\u003cp\u003e This project received full ethical approval from the DCU university psychology ethics committee (DCUPEC_2025_157). Data collection took place over six months from January 2025 to June 2025. Eight semi-structured interviews were conducted as part of the data collection process. Three interviews were conducted virtually via Zoom; three interviews were face-to-face (one on the DCU campus and two in participants\u0026rsquo; homes) and two were conducted over the phone. The average length of the interviews was 48 minutes and ranged from 27 minutes to 1 hour and 9 minutes. Individuals who completed a virtual or phone interview were sent an online consent form to complete an interview only to send back to the researcher in advance of the interview. For those who completed in-person interviews, participants were given the option of completing the consent form online and sending it back in advance of the interview or signing a physical consent form on the day of the interview. All interviews were audio-recorded on two devices (Zoom recording, phone or Dictaphone) as a failsafe against file corruption and were uploaded to a secure google drive account directly after each interview and were subsequently deleted from the relevant devices. The first author began each interview with a couple of minutes of problem-free talk in order to make the participant more comfortable and build a rapport. The interview then focused on some background information about the participant and their family member (including their demographic and clinical details), before moving to discuss their family member\u0026rsquo;s diagnosis, their relationship with them and any stigma experienced by either party due to the diagnosis. The interview schedule was specifically developed for the current study by the first author [See Supplementary File 1] and refined through feedback and revisions from the second author.\u003c/p\u003e\u003cdiv id=\"Sec6\" class=\"Section2\"\u003e\u003ch2\u003eData Analysis\u003c/h2\u003e\u003cp\u003eData analysis was conducted using Braun and Clarke\u0026rsquo;s [34, 35] method for reflexive thematic analysis. Reflexive thematic analysis emphasizes the researcher\u0026rsquo;s active role in theme development through analytic \u0026lsquo;work\u0026rsquo; and acknowledges that themes are actively created by the researcher through the analytic process and subjectivity [35]. It involves reflective and thoughtful engagement with the data and the analytic process. Themes are generated this way to allow for development of a richer, more nuanced reading of the data [35]. This method was used as a structured guide for analysis in order to identify patterns (themes) that emerged from the data which allows for a rich description of the data set. This analysis involved six steps: de-identifying the transcript and familiarising yourself with the data; generating initial codes; searching for themes; reviewing themes; defining and naming themes; producing the report. During the transcription process, the first author ensured any potential identifiable information was de-identified by redacting any names of individuals spoken about and redacting information on any identifiable places. In total, there was six and a half hours of audio transcribed. Once the first author became familiar with the data, the process of descriptive coding was initiated. This process involved completing initial codes of the data. This was then further developed by searching for, reviewing and defining themes within the codes. The second author was involved at each stage of the process to ensure accuracy, cohesion and reduce the risk of bias. According to Lincoln \u0026amp; Guba\u0026rsquo;s [36, 37] criteria for ensuring trustworthiness in qualitative research, the following steps were taken: credibility was ensured through frequent debriefing sessions with the second author where they ensured that the quotes and themes reflected the sample and research questions based on their knowledge of the subject area; dependability was ensured through these discussions in order to reduce the risk of implicit bias and ensure that the findings were consistent and could be repeated; confirmability was also ensured through discussion with the second author ensuring the findings weren\u0026rsquo;t affected by researcher bias, motivation or interest and by forming an audit trail of the decision-making process from discussions with the second author which allowed for the refinement of themes for the final analysis; finally, the results of this research can be applied to other stigmatised illnesses (e.g. HPV-related cancers) which allows for transferability and external validity to other contexts. All transcripts were coded using NVivo, with any irrelevant information taken out. Relevant quotations were used to illustrate themes within the data. The research team arranged regular meetings to discuss the progress.\u003c/p\u003e\u003c/div\u003e\n\u003ch3\u003eReflexivity\u003c/h3\u003e\n\u003cp\u003eAs the first author has personal experience with a family member having a lung cancer diagnosis, she took steps to mitigate the risk of bias. In particular, the research team arranged regular meetings and the second author oversaw each stage of data analysis to check for bias. Reflexive journaling was also completed for the first author to check bias throughout the analysis process. Furthermore, additional steps were put in place with the second author in supervision and debriefing following interviews to ensure the first author\u0026rsquo;s wellbeing.\u003c/p\u003e"},{"header":"Results","content":"\u003cp\u003eThe first author conducted 8 interviews. Of these participants, their age groups ranged from 20-29 to 60-69 and the sample included two males and six females. For further information on demographic characteristics of participants, please see Table 1 below.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTable 1\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eParticipant demographic characteristics\u003c/em\u003e\u003c/p\u003e\n\u003ctable border=\"0\" cellspacing=\"0\" cellpadding=\"0\" width=\"730\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 9.02873%;\"\u003e\n \u003cp\u003eID\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 7.38714%;\"\u003e\n \u003cp\u003eFamily Member\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 10.6703%;\"\u003e\n \u003cp\u003eType of Cancer\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 7.11354%;\"\u003e\n \u003cp\u003eCancer Stage\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8.48153%;\"\u003e\n \u003cp\u003eInitial Diagnosis\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 11.6279%;\"\u003e\n \u003cp\u003eTreatments\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8.20793%;\"\u003e\n \u003cp\u003ePerson with Cancer Bereaved or \u0026nbsp; \u0026nbsp; \u0026nbsp;Alive\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 9.02873%;\"\u003e\n \u003cp\u003eParticipant Age\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8.20793%;\"\u003e\n \u003cp\u003ePerson with Cancer\u0026rsquo;s Age\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 9.84952%;\"\u003e\n \u003cp\u003eParticipant Smoking History\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8.20793%;\"\u003e\n \u003cp\u003ePerson with Cancer\u0026rsquo;s Smoking History\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 2.18878%;\"\u003e\n \u003cp class=\"MsoNormal\"\u003e\u003cspan lang=\"EN-IE\"\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp;\u003c/span\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 9.02873%;\"\u003e\n \u003cp\u003eJulie\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 7.38714%;\"\u003e\n \u003cp\u003eFather\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 10.6703%;\"\u003e\n \u003cp\u003eNon-Small Cell Lung Cancer, Adenocarcinoma\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 7.11354%;\"\u003e\n \u003cp\u003eStage 4\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8.48153%;\"\u003e\n \u003cp\u003eSeptember 2024\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 11.6279%;\"\u003e\n \u003cp\u003eTargeted therapy, Bone strengthener\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8.20793%;\"\u003e\n \u003cp\u003eAlive\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 9.02873%;\"\u003e\n \u003cp\u003e20-29\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8.20793%;\"\u003e\n \u003cp\u003e60-69\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 9.84952%;\"\u003e\n \u003cp\u003eNot specified\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8.20793%;\"\u003e\n \u003cp\u003eNon-smoker\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 2.18878%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 9.02873%;\"\u003e\n \u003cp\u003eSusan\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 7.38714%;\"\u003e\n \u003cp\u003eMother\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 10.6703%;\"\u003e\n \u003cp\u003eNon-Small Cell Lung Cancer\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 7.11354%;\"\u003e\n \u003cp\u003eStage 4\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8.48153%;\"\u003e\n \u003cp\u003eAugust 2019\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 11.6279%;\"\u003e\n \u003cp\u003eImmunotherapy, Chemotherapy, Radiation\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8.20793%;\"\u003e\n \u003cp\u003eBereaved\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 9.02873%;\"\u003e\n \u003cp\u003e30-39\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8.20793%;\"\u003e\n \u003cp\u003e60-69\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 9.84952%;\"\u003e\n \u003cp\u003ePast smoker\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8.20793%;\"\u003e\n \u003cp\u003ePast smoker\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 2.18878%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 9.02873%;\"\u003e\n \u003cp\u003eJane\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 7.38714%;\"\u003e\n \u003cp\u003eHusband\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 10.6703%;\"\u003e\n \u003cp\u003eType unspecified, Stage 3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 7.11354%;\"\u003e\n \u003cp\u003eStage 3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8.48153%;\"\u003e\n \u003cp\u003eApril 2019\u003c/p\u003e\n \u003cp\u003eRecurrence 2021\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 11.6279%;\"\u003e\n \u003cp\u003eLung resection,\u003c/p\u003e\n \u003cp\u003eChemo, Radiation, Immunotherapy\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8.20793%;\"\u003e\n \u003cp\u003eAlive\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 9.02873%;\"\u003e\n \u003cp\u003e50-59\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8.20793%;\"\u003e\n \u003cp\u003e50-59\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 9.84952%;\"\u003e\n \u003cp\u003ePast smoker\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8.20793%;\"\u003e\n \u003cp\u003ePast smoker\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 2.18878%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 9.02873%;\"\u003e\n \u003cp\u003eGloria\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 7.38714%;\"\u003e\n \u003cp\u003eBrother\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 10.6703%;\"\u003e\n \u003cp\u003eSmall Cell Lung Cancer\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 7.11354%;\"\u003e\n \u003cp\u003eStage 4\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8.48153%;\"\u003e\n \u003cp\u003eAugust 2023\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 11.6279%;\"\u003e\n \u003cp\u003eChemo, immunotherapy, radiotherapy\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8.20793%;\"\u003e\n \u003cp\u003eBereaved\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 9.02873%;\"\u003e\n \u003cp\u003e60-69\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8.20793%;\"\u003e\n \u003cp\u003e70-79\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 9.84952%;\"\u003e\n \u003cp\u003eNot specified\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8.20793%;\"\u003e\n \u003cp\u003ePast smoker\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 2.18878%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 9.02873%;\"\u003e\n \u003cp\u003eDean\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 7.38714%;\"\u003e\n \u003cp\u003eFather\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 10.6703%;\"\u003e\n \u003cp\u003eNon-Small Cell Lung Cancer,\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 7.11354%;\"\u003e\n \u003cp\u003eStage 2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8.48153%;\"\u003e\n \u003cp\u003eApril 2022\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 11.6279%;\"\u003e\n \u003cp\u003eRadiation\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8.20793%;\"\u003e\n \u003cp\u003eBereaved\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 9.02873%;\"\u003e\n \u003cp\u003e20-29\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8.20793%;\"\u003e\n \u003cp\u003e70-79\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 9.84952%;\"\u003e\n \u003cp\u003eSmoker\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8.20793%;\"\u003e\n \u003cp\u003eSmoker\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 2.18878%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 9.02873%;\"\u003e\n \u003cp\u003eAnnette\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 7.38714%;\"\u003e\n \u003cp\u003eHusband\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 10.6703%;\"\u003e\n \u003cp\u003eNon-Small Cell Lung Cancer\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 7.11354%;\"\u003e\n \u003cp\u003eStage 2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8.48153%;\"\u003e\n \u003cp\u003eApril 2022\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 11.6279%;\"\u003e\n \u003cp\u003eRadiation\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8.20793%;\"\u003e\n \u003cp\u003eBereaved\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 9.02873%;\"\u003e\n \u003cp\u003e60-69\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8.20793%;\"\u003e\n \u003cp\u003e70-79\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 9.84952%;\"\u003e\n \u003cp\u003eSmoker\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8.20793%;\"\u003e\n \u003cp\u003eSmoker\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 2.18878%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 9.02873%;\"\u003e\n \u003cp\u003ePaul\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 7.38714%;\"\u003e\n \u003cp\u003eMother\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 10.6703%;\"\u003e\n \u003cp\u003eType not specified\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 7.11354%;\"\u003e\n \u003cp\u003eStage not specified\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8.48153%;\"\u003e\n \u003cp\u003eNovember 2021\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 11.6279%;\"\u003e\n \u003cp\u003eNo treatment\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8.20793%;\"\u003e\n \u003cp\u003eBereaved\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 9.02873%;\"\u003e\n \u003cp\u003eNot specified\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8.20793%;\"\u003e\n \u003cp\u003e70-79\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 9.84952%;\"\u003e\n \u003cp\u003eNon-smoker\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8.20793%;\"\u003e\n \u003cp\u003eSmoker\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 2.18878%;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 9.02873%;\"\u003e\n \u003cp\u003eBernadette\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 7.38714%;\"\u003e\n \u003cp\u003eHusband\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 10.6703%;\"\u003e\n \u003cp\u003eNon-Small Cell Lung Cancer - Adenocarcinoma\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 7.11354%;\"\u003e\n \u003cp\u003eStage 4\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8.48153%;\"\u003e\n \u003cp\u003eSeptember 2023\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 11.6279%;\"\u003e\n \u003cp\u003eChemotherapy\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8.20793%;\"\u003e\n \u003cp\u003eBereaved\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 9.02873%;\"\u003e\n \u003cp\u003e40-49\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8.20793%;\"\u003e\n \u003cp\u003e40-49\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 9.84952%;\"\u003e\n \u003cp\u003eNon-smoker\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 10.3967%;\"\u003e\n \u003cp\u003eNon-smoker\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e\u003cem\u003eNote\u003c/em\u003e. IDs provided are pseudonyms\u003c/p\u003e\n\u003cp\u003eThe present study identified five themes relating to lung cancer stigma: \u003cem\u003eCuriosity, or blame? Stereotypical questions about smoking behaviours and its impact, Discrimination and unfair treatment from healthcare providers, Feeling judged by association, Changing cultural and public views of smoking fuels stigma, Cognitive strategies for managing and resisting stigma.\u0026nbsp;\u003c/em\u003eParticipants identified a wide range of sources of stigma coming from family, friends, healthcare professionals and society.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eIn the following sections, ellipses have been put in square brackets where quotes were contracted and, where context was needed for the quotations, further contextual information has been placed in square brackets.\u0026nbsp;\u003c/p\u003e\n\u003col\u003e\n \u003cli\u003e\u003cstrong\u003e\u003cem\u003e\u0026ldquo;I could feel my blood boiling\u0026rdquo;: Curiosity, or blame? Stereotypical questions about smoking behaviours and their impact\u003c/em\u003e\u003c/strong\u003e\u003c/li\u003e\n\u003c/ol\u003e\n\u003cp\u003eAll participants confirmed that, at some point, both themselves and their loved ones had been asked about their loved one\u0026rsquo;s smoking history. Julie (father, alive) indicated:\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;There were certain people as well [where] you just sort of knew that question [would be asked] [\u0026hellip;] I did have one friend that was like, \u0026ldquo;oh, was he a smoker?\u0026rdquo; I got quite defensive \u0026lsquo;cause it was that thing where it\u0026apos;s like assuming that people who did smoke also deserve [lung cancer]. Like people have this thought that like \u0026ldquo;oh, well you know.. He was a smoker,\u0026rdquo; but, yeah, he wasn\u0026apos;t. But I was like, \u0026ldquo;why does that have anything to do with it?\u0026rdquo; [\u0026hellip;] We\u0026apos;ve talked about it [as a family] and it\u0026apos;s like, \u0026ldquo;oh my god, I\u0026apos;m sick of people asking me [does my father] smoke\u0026rdquo;\u0026rdquo;.\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eFurthermore, Gloria (brother, bereaved) indicated similar experiences, highlighting that it is often the first question people ask:\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;They [neighbours] didn\u0026apos;t even know [my brother] was sick because I\u0026apos;d been missing for so long. And I just told them that I was just coming from the hospital and that [my brother] had died, they didn\u0026apos;t even know he was sick and [they] said, \u0026ldquo;oh, what happened?\u0026rdquo; And I said, \u0026ldquo;he had lung cancer\u0026rdquo;. And the first question was, \u0026ldquo;did he smoke?\u0026rdquo;\u0026hellip; before there was, \u0026ldquo;oh, I\u0026apos;m sorry\u0026rdquo;\u0026rdquo;.\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eSusan (mother, bereaved) expressed how stigma was experienced both towards her mother and herself from within the family and from other members of her social circle:\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;A lot of people I\u0026rsquo;d say even in the family would have been like \u0026ldquo;aw jaysus, [mother\u0026rsquo;s name], you should have quit smoking a long time ago.\u0026rdquo; There was that and, even now, if somebody had said to me \u0026ldquo;what happened to your mam?\u0026rdquo; and you said, \u0026ldquo;it was lung cancer\u0026rdquo; it would be \u0026ldquo;aw well, she was a smoker, was she?\u0026rdquo; You know there\u0026rsquo;s that kind of stigma to it. [\u0026hellip;] Now, a friend of hers would say \u0026ldquo;I suppose you should have given up the cigarettes before it happened. Look what\u0026apos;s after happening now. It doesn\u0026apos;t matter how long you\u0026apos;re on them. Or how long your off them. It\u0026apos;s going to get you in the end.\u0026rdquo; You know, that kind of stuff.\u0026rdquo;\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eAdditionally, Annette (husband, bereaved) also mentioned that members of the family would make comments regarding both her and her husband\u0026rsquo;s smoking habits:\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;You do get people all right that won\u0026rsquo;t want to sit anyone near you, which I have one son that will keep his distance (laughs). If you are smoking, you know. I know, he has often said that \u0026ldquo;they\u0026apos;ll kill you; they\u0026apos;ll kill you.\u0026rdquo; And said it to his father as well.\u0026rdquo; \u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eIn terms of the impact that the stigma can have, Susan (mother, bereaved) indicated that smoking stigma regarding lung cancer can leave the individual with lung cancer feeling at fault and can cause internalised stigma:\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;You\u0026rsquo;re made to feel guilty. You know, it\u0026apos;s like, \u0026ldquo;oh, you smoked, well, you know, what do you expect?\u0026rdquo; kind of thing. There is not as much compassion around it\u0026hellip; around the whole lung cancer in general it\u0026apos;s just like -[if] somebody\u0026apos;s got breast cancer, bowel cancer, whatever, I think there\u0026apos;s more compassion around those as such. [People might say] \u0026ldquo;oh you poor thing\u0026rdquo; whereas [with] lung cancer, it\u0026rsquo;s \u0026ldquo;did you smoke?\u0026rdquo;, \u0026ldquo;yeah\u0026rdquo;, \u0026ldquo;Oh, right. Okay. Well.\u0026rdquo; And that\u0026apos;s kind of it\u0026hellip;It\u0026apos;s kind of like, \u0026ldquo;oh, it\u0026apos;s your own fault\u0026rdquo;\u0026rdquo;.\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp;Jane (husband, alive) also described the negative effect it has on her personally:\u003c/p\u003e\n\u003cp\u003e\u0026nbsp; \u003cem\u003e\u0026ldquo;I got quite annoyed with a few people... You know, I could feel my blood boiling. It\u0026apos;s like people I work with and they obviously can\u0026apos;t\u0026hellip; I just can\u0026rsquo;t explode on them but it\u0026rsquo;s just like, \u0026ldquo;really?\u0026rdquo;\u0026rdquo;.\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003col start=\"2\"\u003e\n \u003cli\u003e\u003cstrong\u003e\u003cem\u003e\u0026ldquo;She\u0026rsquo;s going to die anyway\u0026rdquo;: Discrimination and unfair treatment from healthcare providers.\u003c/em\u003e\u003c/strong\u003e\u003c/li\u003e\n\u003c/ol\u003e\n\u003cp\u003eSome participants indicated that their family members experienced judgemental attitudes, unfair treatment and a lack of information from healthcare professionals regarding their loved one\u0026rsquo;s lung cancer. Jane (husband, alive) indicated:\u003c/p\u003e\n\u003cp\u003e\u0026ldquo;\u003cem\u003eThe only thing with the lung consultant, [my husband] was in with him one day and I don\u0026apos;t know where he was\u0026hellip; But he came back smelling of smoke and he said the guy just got so cross and angry with him and he was like, \u0026ldquo;I wasn\u0026apos;t smoking\u0026rdquo;. It was obviously somebody smoking near him or whatever. [\u0026hellip;] Do you [know] when you stand near somebody and you kind of come back and you\u0026apos;re the one who smells of it? [\u0026hellip;] Yeah, he was getting quite cross with him. He was like, \u0026ldquo;were you smoking?\u0026rdquo; And, you know, he\u0026apos;s like, \u0026ldquo;no, I wasn\u0026apos;t. It was [someone else outside]\u0026rdquo;\u0026rdquo;.\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eAnother participant perceived that the hospital staff saw lung cancer as a death sentence and left her mother in bed without adequate care. Susan (mother, bereaved) stated:\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;She was resting in bed for 6 weeks you know they basically had given her a life sentence anyway [\u0026hellip;] They just kind of left her there, she ended up getting a blood clot in the lung\u0026hellip; It was absolutely ridiculous [\u0026hellip;] She walked into that hospital and from there she had to come and live in my house [\u0026hellip;] So, I think you know they knew she had lung cancer so they were just like \u0026ldquo;ah she\u0026rsquo;s gonna die anyway\u0026rdquo; [\u0026hellip;] you know that kind of way, which was a bit hard\u0026rdquo;.\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eAnother participant and their loved one experienced issues with accessing treatments and receiving adequate information from healthcare providers. Jane (husband, alive) stated:\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eYeah, they were putting it off for the first while, it was like, \u0026ldquo;oh, the [next scan is in] six months.\u0026rdquo; And I was like \u0026ldquo;that\u0026apos;s a bit too far\u0026hellip; you know, can we not get one sooner?\u0026rdquo; So, the first year was\u0026hellip; It was a matter of running after them sometimes or [\u0026hellip;] You have to advocate for yourself, almost. To get them to do it. [\u0026hellip;] Because even it\u0026apos;s the same with the consultants you kind of have to know the questions to ask them because they\u0026apos;re not they\u0026apos;re not very forthcoming with [information]. Like, we had to ask what stage he was at\u0026hellip; I don\u0026apos;t think they would have told us otherwise.\u0026rdquo;\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003col start=\"3\"\u003e\n \u003cli\u003e\u003cstrong\u003e\u003cem\u003e\u0026ldquo;You feel like you have a neon light over your head\u0026rdquo;: Feeling judged by association\u003c/em\u003e\u003c/strong\u003e\u003c/li\u003e\n\u003c/ol\u003e\n\u003cp\u003eParticipants spoke about the difficulties that their loved one\u0026rsquo;s diagnosis had on them through feeling like they were the center of attention, feeling judged for smoking, losing friendships and fighting with quiet judgments from society. For instance, Bernadette (bereaved) felt conscious of the diagnosis and worried what people would say when they found out her husband had lung cancer:\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;You feel like you have a neon light over your head\u0026hellip; This is the way I felt when he was diagnosed. It\u0026apos;s like, \u0026ldquo;oh my god, everyone\u0026rsquo;s going to think\u0026rdquo; [sic] and \u0026ldquo;oh, there\u0026rsquo;s [her husband] and he has lung cancer.\u0026rdquo; It\u0026rsquo;s just such an unusual cancer for a young person to get.\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003eAnd I was like, \u0026ldquo;oh my god\u0026rdquo;\u0026hellip;. I just sorta felt like you know, it was drawing attention to us.\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003eLike it was such a different type of cancer, or you know, something that you wouldn\u0026rsquo;t usually see in a young person [\u0026hellip;] And I\u0026rsquo;d be like, I was like, even thinking at the time like \u0026ldquo;oh my god\u0026hellip; what are people going to say?\u0026rdquo;\u0026hellip; I do remember feeling like that at the time.\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eAdditionally, Jane (husband, alive) explained the difficulties of dealing with judgements from society regarding her husband\u0026rsquo;s diagnosis:\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;He\u0026apos;s just exhausted\u0026hellip; He could do something one day and he might take another three days to get over it.\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003eHe gets breathless very easy easily, like we noticed when we\u0026apos;re out and about, you know, if he- \u0026nbsp;if we\u0026apos;re doing something too, if he walks too energetically, he\u0026apos;s like (GASPING) you know\u003cstrong\u003e.\u0026nbsp;\u003c/strong\u003eYou just immediately got people looking at him because he\u0026rsquo;s quite a heavy guy as well\u0026hellip; There\u0026rsquo;s loads [of people] just looking at him kind of going, you know, \u0026ldquo;he\u0026apos;s obviously very unfit or something.\u0026rdquo; It\u0026apos;s just one of the invisible disabilities as well really, isn\u0026apos;t it? [\u0026hellip;] And, you know, when people see him huffing and puffing or he is sitting down in a disabled seat on the bus or something and it\u0026apos;s just like they\u0026apos;re looking at him kind of like \u0026ldquo;really?\u0026rdquo;\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003eAnd he\u0026apos;s got this huge scar on his back from the operation and it\u0026apos;s just like, I feel like taking it out and showing people\u0026hellip; \u0026ldquo;this is what\u0026apos;s wrong with him.\u0026rdquo;\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eFurthermore, Jane (husband, alive) explained how the diagnosis impacted friendships due to a lack of understanding:\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;I think, yeah, it has spoiled some relationships as well. Friend wise and stuff, they\u0026apos;re not as\u0026hellip; they were there in the beginning but now they\u0026apos;ve dwindled off and it\u0026apos;s kind of- \u0026nbsp;you\u0026apos;re left on your own a bit as well. To get on with things\u0026hellip; [\u0026hellip;] I think that [because] he\u0026apos;s not actively going through anything I think [it] is just [harder for them to understand] and then there\u0026apos;s the fact as well that he\u0026rsquo;s not able to go out as much as he used to.\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003eIf we do [go out], we can\u0026rsquo;t stay out as long because he gets so tired,\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003eand it\u0026apos;s like, friends, yeah I think we\u0026apos;re seen as the boring party poopers kind of thing, because we did have people over for one of his birthdays a couple of years ago, but we gave them a time limit, that kind of \u0026ldquo;please leave by half nine\u0026rdquo; kind of thing (laughs) [\u0026hellip;] They don\u0026apos;t understand the way the treatment can affect you and it isn\u0026apos;t just the person as well\u0026rdquo;.\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eAnother participant commented on the fact that family members had brought up her smoking habits to her after the diagnosis. Annette (husband, bereaved):\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;No, but what I have found is they\u0026rsquo;d probably advise me to give up the cigarettes\u0026hellip; That you [participant] should try and give them up. [\u0026hellip;] I know they probably are worried. Yes, I can understand that. But, at the same time, like, you can advise somebody to give them up without having to stigmatise them or.. Tell them they\u0026rsquo;re gonna kill you. We all know that\u0026hellip; my son would have said that to me, \u0026ldquo;you should give them up they\u0026rsquo;re bad for your health\u0026rdquo;, but I know he\u0026rsquo;s not saying it in a bad way probably, but he\u0026apos;s probably saying, \u0026ldquo;well if I [son] could do it, you could do it\u0026rdquo;\u0026rdquo;.\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003col start=\"4\"\u003e\n \u003cli\u003e\u003cstrong\u003e\u003cem\u003e\u0026ldquo;It seems to only apply to lung cancer\u0026rdquo;: Changing cultural and public views of smoking fuels stigma\u003c/em\u003e\u003c/strong\u003e\u003c/li\u003e\n\u003c/ol\u003e\n\u003cp\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp;Participants commented on how the cultural views of smoking has changed over the last 20-30 years, indicating that it used to be widely accepted to smoke, with the media portraying it as something desirable. Participants noted how this view has changed in more recent years and has become viewed as a negative health behaviour that is stigmatised. Susan (mother, bereaved) commented:\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;Years ago, they were throwing cigarettes at you, they weren\u0026apos;t telling you about the dangers of it and it was when it was too late, it was \u0026ldquo;oh you can\u0026rsquo;t smoke in pubs and restaurants anymore\u0026rdquo; and \u0026ldquo;this is what\u0026rsquo;s gonna happen to you\u0026rdquo; and \u0026ldquo;now, we\u0026rsquo;ll stick the labels on\u0026rdquo;. But back then there was none of that. It was \u0026ldquo;here\u0026rdquo;.. A packet of cigarettes were cheap (mutters).. And if you didn\u0026rsquo;t have a cigarette in your hand, you weren\u0026rsquo;t cool you know? So, you can\u0026rsquo;t throw them at people and then be like \u0026ldquo;ah sure, you should have known better\u0026rdquo; [\u0026hellip;] It was completely different, I mean everybody, even on adverts, people were sitting there smoking, even if you\u0026rsquo;d watched the soaps, in Coronation street, sure they\u0026apos;re all sitting there having a cigarette. [\u0026hellip;] It was completely normal. Sure, you\u0026rsquo;d be travelling in the car and you\u0026rsquo;d have your mam, your granny, your aunty and uncle they\u0026rsquo;d be all hotboxing the car with you in it\u0026hellip;you know, there was no legislation, there was nothing .. there was nothing about it.\u0026rdquo;\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp;Additionally, Paul (mother, bereaved) added to this, indicating that even doctors used to smoke when his mother was growing up and smoking was not perceived as such a negative health behaviour years at that time, but that those who still smoke are stigmatised even though they were not aware of the negative effects of it when they started smoking:\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;When she was younger, and people smoked, it was seen as.. something good to do. You know, you would have seen doctors at the time smoke, other people smoking, and it wasn\u0026apos;t seen in that negative light that we see in the past, maybe, 20, 30 years\u0026hellip; I think we say, for example, older people, yes. You know, I think that it\u0026rsquo;s probably very difficult to give up smoking. I do think that it\u0026apos;s [difficult]. But, as I said, yeah, I don\u0026apos;t blame them on smoking, if you know what I mean? They made a life choice\u0026hellip; at the time [when they started smoking], they probably weren\u0026apos;t aware of [the negative effects it can have].\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp;Participants indicated that the change in cultural views has led to individuals with lung cancer being stigmatised and blamed more than those with other cancers. For example, Bernadette (husband, bereaved) perceived that lung cancer is judged more harshly compared to other cancers, particularly when it comes to smoking behaviours:\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;I think with the lung cancer, it was nearly... You look for the cause, like, there has to be a reason he got that. Whereas\u0026hellip;. Obviously, there\u0026apos;s a reason why everybody gets something, but I feel like, [with] other cancers, you don\u0026apos;t tend to, maybe think it\u0026rsquo;s, not that the person [who] is at fault, but you don\u0026apos;t be like, \u0026ldquo;oh god, how did you get that now?\u0026rdquo;. If someone had bowel cancer, you don\u0026apos;t be like \u0026ldquo;oh, does she have a real bad diet\u0026rdquo; or that, you know? Nobody ever says that.\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eOther participants indicated that no one looks past smoking behaviours and never ask about any other factors which may have contributed to the cancer. Gloria (brother, bereaved) commented:\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;And you know, it seems to only apply to lung cancer. You know\u0026hellip; It\u0026rsquo;s not something you ask [for other cancers]\u0026hellip; And that it is just the smoking and not the fumes or anything else that could have caused it.\u0026rdquo;\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp;One participant commented on how media has added to the stigma around lung cancer and has impacted the way people view lung cancer and smoking. Julie (father, alive) stated:\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;I don\u0026apos;t know, it\u0026rsquo;s probably just media, like ER, opened [up] this preconceived bias or something [towards smoking and its link with lung cancer]. And that\u0026apos;s probably why as well it was like [a] huge shock to us [because my father never smoked] because of that sort of influence of like seeing the smoking things over the years.\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp;This change in cultural views hasn\u0026rsquo;t been met with a matched understanding of smoking as an addiction. One participant indicated that smoking stigma will always be there as there is less of a focus on smoking as an addiction, but as a negative health behaviour. Dean (father, bereaved) said:\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;There\u0026apos;s always going to be stigma for smokers, because people who don\u0026apos;t smoke think they\u0026apos;re better than those who do smoke [even though smoking is an addiction], which is just immorally wrong. [sic] [\u0026hellip;] All that\u0026apos;s going to happen [when being judged for smoking] is they\u0026apos;re gonna suffer in silence\u0026hellip; There has to be more compassion for people who are stuck in a place where they\u0026apos;re not able to make the choice that they maybe want to make or they don\u0026apos;t want to make, but compassion is the most important thing, so, if you\u0026apos;re not going to be compassionate, then you can\u0026apos;t advocate [for] any cause. Because all you\u0026apos;re doing then is bullying.\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003col start=\"5\"\u003e\n \u003cli\u003e\u003cstrong\u003e\u003cem\u003e\u0026ldquo;I\u0026rsquo;m more proud of the things that she did do, as opposed to the things that she didn\u0026apos;t do\u0026rdquo;: Cognitive strategies for managing and resisting stigma\u003c/em\u003e\u003c/strong\u003e\u003c/li\u003e\n\u003c/ol\u003e\n\u003cp\u003eParticipants commented on how themselves and their family members learnt ways to manage the external stigma associated with lung cancer. Julie (father, alive) indicated that she noticed her father prefixing conversations with the fact that he didn\u0026rsquo;t smoke, as he anticipated it being asked:\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;But like, I noticed that, even when he was telling people, that he felt the need to say, \u0026ldquo;oh, I\u0026apos;ve never smoked.\u0026rdquo; Which is interesting because like\u0026hellip; you wouldn\u0026apos;t say that for any other cancer really. But I know that, when he was telling people himself, he would always preface with that [that he wasn\u0026rsquo;t a smoker]... He was waiting for the question almost so he would like to say it before people would ask him, if that makes sense\u0026rdquo;.\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eSome participants also indicated that they didn\u0026rsquo;t take offense to people asking whether their loved one smoked and cognitively reframed potentially stigmatising questions as curiosity rather than judgement. Dean (father, bereaved) indicated that he never saw it as stigma, but as curiosity, noting that he also would ask the question out of curiosity:\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;Oh yeah. Not in a judgemental way, but they\u0026rsquo;d ask, \u0026ldquo;did he smoke?.\u0026rdquo; Well, I guess that does kind of tell you exactly what they\u0026apos;re thinking. That would be a very popular and common thing to hear. But I never actually understood that that was maybe like a generalisation of the causes of it yeah. I mean, it makes sense, but I just never really, I just thought they asked that just to ask that [\u0026hellip;] Well see, I\u0026apos;d be the kind of person to question it like that, but I also wouldn\u0026apos;t be judging them. I\u0026apos;d just be curious. Maybe let\u0026apos;s say I was also a smoker and I\u0026apos;m kind of like wondering, okay, is that what it was? I probably believe the best in people and hope that if they did ask that question, they\u0026apos;re not stigmatising. They\u0026apos;re just generally curious.\u0026rdquo;\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eAnnette (husband, bereaved) indicated the impact stigma can have on someone who has lung cancer and is a smoker, and resisted stigma through rejecting blame for individuals who chose to continue to smoke and defended her loved one for this choice: \u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;What\u0026apos;s the point in having stigma at that stage in your life? The cancer\u0026apos;s already there. Smoking is not going to make any difference really at that stage. You know, that\u0026apos;s the way I look at it. You\u0026apos;re adding more to their suffering. The shock of what you\u0026rsquo;ve got is enough. And at the end of the day, if a person is terminally ill, they should be allowed to live their life [to] the best they can and enjoy what last bit they have.\u0026rdquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp;\u003c/em\u003eOne participant indicated that he doesn\u0026rsquo;t feel stigmatised by others due to his mother\u0026rsquo;s diagnosis and rejects any feelings of shame. He has accepted the choices his mother made and remembers her with pride. Paul (mother, bereaved) stated:\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;I don\u0026apos;t think I\u0026apos;m stigmatized\u0026hellip; Like, I suppose, you know, stigma sometimes can bring about shame, and I\u0026hellip;. I\u0026apos;m not ashamed that my mam died of lung cancer. I\u0026apos;m not ashamed that she died of lung cancer and was a smoker, if that makes sense? Because I\u0026rsquo;m more proud of the things that she did do, as opposed to the things that she didn\u0026apos;t do.\u0026rdquo;\u0026nbsp;\u003c/em\u003e\u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003eTo the authors\u0026rsquo; knowledge, this is the first study to examine family members\u0026rsquo; experiences of lung cancer stigma and their perspectives of their loved ones\u0026rsquo; experiences. The findings indicate that lung cancer family members witnessed their loved ones experiencing stigma from other family members, friends, healthcare providers and society members. Additionally, family members experienced stigma by association. This study identified five themes: \u003cem\u003eCuriosity, or blame? Stereotypical questions about smoking behaviours and its impact, Discrimination and unfair treatment from healthcare providers, Feeling judged by association, Changing cultural and public views of smoking fuels stigma, Cognitive strategies for managing and resisting stigma.\u003c/em\u003e\u003c/p\u003e\u003cp\u003e An important but perhaps unsurprising finding was how prominent the question of \u0026ldquo;Did they smoke?\u0026rdquo; was asked for both participants and their loved ones when discussing the diagnosis across a range of groups. This finding resonates with previous research [16] and amplifies the fact that society views smoking as the primary cause of lung cancer in line with media communications. Participants also reported blame from family and friends towards their loved one, particularly for smoking-related behaviours, and this reflects previous studies [4, 13, 14]. This may lead to relationship distress, reduced communication and conflict [23, 27, 28]. Importantly, stereotypical questioning was experienced by both smokers and non-smokers, leading us to believe that this is a common experience for anyone diagnosed with lung cancer, reflecting previous research [4, 21, McCann et al., 2025, manuscript under review]. Participants noted how this stigma resulted in internalised feelings such as guilt and shame for their loved ones, which resonates with previous research showing that attribution of blame can leave individuals feeling stigmatised [14, 15, 20]. Other research has found that the impact of this can ultimately lead those with lung cancer to conceal their diagnosis due to shame or fear of judgement [5, 15, 20] or delay medical help seeking behaviours, resulting in poorer health outcomes [10, 13, 14]. Psychological consequences of this may include depression [38], lower quality of life [17] and higher levels of anxiety and distress [39, 40] for those with lung cancer. Participants reported how this emotionally affected them as family members also, resulting in anger, frustration and defensiveness. This resonates with research on mental health stigma, where family members experienced a high level of emotional burden due to the associated discrimination [31]. These findings are important as they give us new insights into the impact of lung cancer stigma from the family members perspective, and how the negative effects of this stigma can affect families just as deeply.\u003c/p\u003e\u003cp\u003eAn important finding was how participants recalled potential discrimination, judgemental attitudes and inadequate communication towards their loved ones from healthcare providers. Participants described how healthcare providers assumed smoking history and saw lung cancer as a death sentence, leading to inadequate care. This led to higher levels of perceived stigma for both members. This finding supports previous research which found that general practitioners and nurses held more blame towards individuals with lung cancer, even when individuals were non-smokers [14, 41, 42]. This finding is important as poor provider communication is consistently associated with higher stigma [43, 44] and may lead to difficulties with treatment adherence, further emotional challenges such as anxiety or mistrust with the healthcare provider and feeling a lack of empathy. This shows the negative effects of poor communication between healthcare providers and individuals affected by lung cancer.\u003c/p\u003e\u003cp\u003eAnother key theme was that participants reported stigma by association. Participants described feeling judged by family members and society and experiencing the loss of friendships. This finding reflects previous research in other stigmatised health conditions such as HIV [29, 30]. The finding that one participant felt the diagnosis was unusual and that it drew attention to her family is similar to previous research on mental health stigma indicating that family stigma is often due to a degree of unusualness in the family [30, 31]. This can cause internal stigma and emotional consequences such as fear, worry or concern [30, 31]. The finding that participants felt judged by society also reflects research on mental health stigma highlighting the social consequences of stigma by association, such as discrimination, negative treatment and feeling a family burden [30]. Furthermore, the loss of friendships reported resonates with previous research on mental health stigma, highlighting the interpersonal consequences such as social exclusion or isolation due to a stigmatised illness [29, 30, 31]. Finally, the finding that participants felt judged by other family members regarding their own smoking habits even when they were not ill is interesting and suggests that participants experience externalised stigma from other family members due to shared behaviours. These findings relate to and extend upon previous research on caregivers of individuals with lung cancer [32] showing that family members also experience stigma by association. They also demonstrate that family members also carry the social burden of a lung cancer diagnosis and emphasises that the whole family experiences lung cancer stigma. These findings highlight the need for support for family members to help navigate lung cancer stigma.\u003c/p\u003e\u003cp\u003eA novel finding was that participants commented on how cultural views and public attitudes towards smoking have changed and this has fuelled the stigma and lack of compassion towards lung cancer. Participants recalled how smoking was once widely accepted, even among doctors and celebrities, which has been highlighted in previous research [45]. However, it is now a negative health behaviour and those who smoke are judged for their actions, rather than being met with compassion and understanding. Participants noted how there is less compassion for individuals with lung cancer, but instead survivors are met with judgement and blame due to a lack of understanding of the causes of cancer. This is due to concerns about media portrayals emphasising lung cancer as directly related to smoking. Considering these concerns, there is a need for more specific advertisements depicting more accurate information; e.g. emphasising smoking as a risk factor for, rather than cause of, lung cancer.\u003c/p\u003e\u003cp\u003eInterestingly, participants described using a range of cognitive strategies to cope with stigma. One mentioned how her loved one pre-emptively identified as a non-smoker when disclosing his diagnosis to avoid blame, as he anticipated this stereotypical question. This shows that stigma can be an anticipated response in relation to societal beliefs [7]. Another strategy employed by two participants was cognitive reframing of potentially stigmatising questions. Rather than taking offense when others asked about their loved one\u0026rsquo;s smoking history, they chose to interpret these questions as curiosity rather than blame. Another two participants discussed how they resist the stigma directed at individuals who smoke and have lung cancer by rejecting blame on individuals for their personal choices, emphasizing that stigma only adds to their suffering. These findings demonstrate how individuals can actively resist internalising stigma, reflecting elements of Cognitive Behavioural Therapy (CBT) such as defusion and values-guided actions [46]. These techniques may encourage individuals to recognise and step back from negative thoughts and accept painful emotions associated with stigma. The findings from this study suggest that both survivors and family members may already be using these techniques to cope with stigma. This offers valuable insights for developing targeted interventions to support individuals affected by lung cancer.\u003c/p\u003e\u003cdiv id=\"Sec10\" class=\"Section2\"\u003e\u003ch2\u003eImplication for Lung Cancer Survivors\u003c/h2\u003e\u003cp\u003eThese findings have several implications for individuals with lung cancer and their families. The strategies identified in this study can inform future interventions focused on coping with stigma. Communication skills training could be used to help survivors and family members address stigmatising comments or proactively bring up smoking in advance of people asking. Additionally, therapeutic interventions such as Acceptance and Commitment Therapy (ACT), Cognitive Behavioural Therapy (CBT) and Mindfulness-Based Stress Reduction (MBSR) have been found to have promising results in reducing stigma outcomes for lung cancer survivors through helping individuals accept difficult emotions, challenge internalised stigma, and improve emotional wellbeing [46\u0026ndash;48]. However, further work is needed to include randomised controlled trials and longitudinal studies to better evaluate their efficacy for survivors. Considering that family members have been excluded from many relevant interventions available for cancer survivors,, offering these interventions to family members and incorporating their perspectives and coping strategies is essential for understanding how stigma impacts the whole family and will help identify for family members to cope with stigma.\u003c/p\u003e\u003cp\u003eTo address stigma within families, interventions focusing on communications training to encourage less blame and more compassion towards the survivor may be helpful. Previous interventions using psychoeducation and CBT focusing on improving communication and coping skills in families dealing with cancer have found significant results [49]. Overall, they found less negativity, increased communication, reduced psychological distress and avoidance, lower depression and greater relationship satisfaction compared to control groups [49]. However, they only focused on couples or families with children with cancer and did not examine other familial relationships. Additionally, these interventions were only a once-off and focused broadly on different cancer types, none of which were lung cancer. However, they show promise in increasing communication, improving relationship conflict and lowering depression and therefore should be evaluated in the context of lung cancer for the survivor and family members.\u003c/p\u003e\u003cp\u003eFuture work focusing on educational campaigns aimed at reducing negative public perceptions of lung cancer need to be widely implemented to tackle lung cancer stigma. There has been a few initiatives which directly targeted public stigma around lung cancer. Two campaigns which were implemented were Lung Cancer Europe\u0026rsquo;s (LuCE) 2024 awareness campaign \u003cem\u003eGet Educated\u003c/em\u003e and LUNGevity\u0026rsquo;s 2024 campaign \u003cem\u003eAnyone with Lungs Can Get Lung Cancer.\u003c/em\u003e These campaigns aimed to educate the public about the reality of living with lung cancer, educate people about the risk factors and show that non-smokers are also affected by lung cancer in order to reduce the stigma attached to it. Although promising, the effectiveness of these campaigns has not yet been established. Future campaigns should take into account the findings of the current study and should also explicitly include family member experiences, highlighting the emotional and social challenges they face. This could be achieved through a focus on sharing both lung cancer survivors and family members\u0026rsquo; stories in order to create awareness and break down stereotypes.\u003c/p\u003e\u003cp\u003eAdditionally, future work needs to focus on providing training for healthcare providers in order to avoid judgemental conversations and to encourage empathetic conversations. Guidelines from the International Association for the Study of Lung Cancer in 2021 [50] and the National Comprehensive Cancer Network in 2025 [51] emphasizes the need to promote judgement-free, bias-free, person-first language, where individuals should not be blamed for their disease or made feel stigmatised by past or current behaviours. These guidelines need to be implemented in healthcare settings through training and protocols in order to encourage the use of this person-first language when dealing with lung cancer survivors and their families. Healthcare providers must also aim to provide lung cancer survivors and their families with adequate information regarding their diagnosis and equal treatment, as this has been reported both in the current study and previous studies as something that is lacking from healthcare providers. While one intervention focusing on empathic communication skills for healthcare providers showed increased participant satisfaction with communication, it had no effect on stigma levels or perceived empathy [43]. This may be due to the fact that it only included one training session. Furthermore, this intervention only focused on lung cancer survivors and didn\u0026rsquo;t include family members, and therefore further interventions are needed to include both family members\u0026rsquo; perspective of communication skills from healthcare providers.\u003c/p\u003e\u003cp\u003eFinally, access to mental health services should be available for survivors and their family members to ensure that they can access supports if they need help coping with stigma. Peer support groups should be offered for both members which can offer a safe space for them to speak without fear of judgement, with individuals in similar situations, as participants reported a lack of support from friends and this underscores the need for peer support groups. Cancer support organisations could also create more awareness of the supports available for survivors but also for family members. Since many family members are also the primary caregiver of their loved ones throughout their cancer journey, it is therefore essential to look after their mental health and wellbeing to ensure they do not get burnt out and that they can provide adequate care and emotional support for their loved ones.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec11\" class=\"Section2\"\u003e\u003ch2\u003eStrengths \u0026amp; Limitations\u003c/h2\u003e\u003cp\u003eThere are a number of strengths that should be considered when interpreting the findings of the present study. This study is the first study to the authors\u0026rsquo; knowledge which has examined family members\u0026rsquo; experiences and perspectives of lung cancer stigma. Another strength of this study is that it included both smokers and non-smokers in terms of both the participants and those with lung cancer, ensuring that different voices were represented herein. A final strength of this study is the potential value of the research for other cancers with potential stigma such as HPV-related cancers or liver cancers. In terms of limitations, in spite of a lengthy and engaged recruitment drive across a six-month period involving multiple partner organisations in Ireland, this study only managed to recruit eight participants, which may be regarded as a small sample size even for a qualitative study of this nature. Of the eight participants, there was some variation in familial relationships, with four participants who had a parent with lung cancer, three who had a husband with lung cancer and one who had a sibling with lung cancer. However, there was a lack of other familial relationships, such as wives or children, and this may have led to a biased sample. Additionally, there was some variation in the timing of the diagnosis, with the timeframe varying from 2019\u0026ndash;2024. Within this timeframe, some participants were bereaved and this may have biased the sample. Another limitation of this study was that the majority of interviews (five) were conducted online through Zoom or over the phone. This may have resulted in a less personal interview through the loss of non-verbal communication. Despite this, the interviews contained rich and detailed participant accounts, suggesting that these limitations did not adversely impact the quality of the research.\u003c/p\u003e\u003c/div\u003e"},{"header":"Conclusion","content":"\u003cp\u003eIn conclusion, this study identified five themes relating to lung cancer stigma: \u003cem\u003eCuriosity, or blame? Stereotypical questions about smoking behaviours and its impact, Discrimination and unfair treatment from healthcare providers, Feeling judged by association, Changing cultural and public views of smoking fuels stigma, Cognitive strategies for managing and resisting stigma.\u003c/em\u003e These novel findings offer insight into how stigma affects both survivors and their family members. Family members perceived externalised stigma from relatives, friends, healthcare providers and society towards their loved one. Common forms of stigma included persistent questioning about smoking behaviours, blame directed at smokers, and discrimination from healthcare providers. Many participants also described stigma by association through feeling worried about others\u0026rsquo; reactions, isolated and judged by other relatives and society members. Participants highlighted that lung cancer stigma has led to internalised stigma, such as guilt and shame for their loved ones, and led them to experience anger, defensiveness, and frustration. In light of these findings, there is a clear need for coordinated public campaigns to reduce societal stigma. Interventions should include empathic communication training for healthcare providers, communication skills training for families and psychosocial support for both survivors and their families. Future research should further examine family members\u0026rsquo; experiences and perspectives in order to gain a broader understanding of lung cancer stigma.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003ch2\u003eConflicts of Interest/Competing Interests:\u003c/h2\u003e\u003cp\u003eThe authors declare that they have no conflict of interest to report.\u003c/p\u003e\u003c/p\u003e\u003cp\u003e\u003cstrong\u003eEthics Approval:\u003c/strong\u003e\u003cp\u003e This study received full ethical approval from the Psychology Ethics Committee, Dublin City University (DCUPEC_2025_157). Procedures and practices carried out as part of the present research were at all times in line with the ethical standards of the pertinent institutional research ethics committees and the 1964 Helsinki declaration and its later amendments.\u003c/p\u003e\u003c/p\u003e\u003cp\u003e\u003cstrong\u003eConsent to Participate:\u003c/strong\u003e\u003cp\u003e Informed consent for participation was received from all participants prior to partaking in the research (including consent to provide their demographic and clinical details).\u003c/p\u003e\u003c/p\u003e\u003cp\u003e\u003cstrong\u003eConsent for Publication:\u003c/strong\u003e\u003cp\u003e Informed consent was received from all participants prior to partaking in the research regarding the potential for publication of pseudonymised data in academic journals or conferences.\u003c/p\u003e\u003c/p\u003e\u003ch2\u003eFunding:\u003c/h2\u003e\u003cp\u003eThis study was self-funded. No funding was received for conducting this study.\u003c/p\u003e\u003ch2\u003eAuthor Contribution\u003c/h2\u003e\u003cp\u003eS.McC.: Conceptualisation, data curation and design, data analysis and interpretation, original manuscript preparation, writing, review and editing. S.D.: Conceptualisation, data curation and design, supervision, interpretation, manuscript review and editing.\u003c/p\u003e\u003ch2\u003eAcknowledgement\u003c/h2\u003e\u003cp\u003eWe would like to thank all of our participants for partaking in this study. Additionally, we would like to thank Breakthrough Cancer, the Irish Cancer Society, the Marie Keating Foundation, the Irish Lung Cancer Community and various groups such as Cancer Care West, Purple House, ARC, Family Carers Ireland and Care Alliance Ireland who helped us with our recruitment process.\u003c/p\u003e\u003ch2\u003eData Availability\u003c/h2\u003e\u003cp\u003eAny NVivo material representing the thematic analysis process at different stages of coding can be requested from the first author.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cspan\u003e\u003cli\u003e\u003cp\u003eBray F, Laversanne M, Sung H, Ferlay J, Siegel RS, Soerjomataram I, et al. 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Couple and family interventions in health problems. \u003cem\u003eJ Marital Fam Ther\u003c/em\u003e. 2012;38(1):265\u0026ndash;280. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://doi.org/10.1111/j.1752-0606.2011.00269.x\u003c/span\u003e\u003cspan address=\"10.1111/j.1752-0606.2011.00269.x\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/p\u003e\u003c/li\u003e\u003c/span\u003e\u003cspan\u003e\u003cli\u003e\u003cp\u003eInternational Association for the Study of Lung Cancer. Language Guide [Internet]. 2021 [cited 2025, July 6]. Available from \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://www.iaslc.org/IASLCLanguageGuide\u003c/span\u003e\u003cspan address=\"https://www.iaslc.org/IASLCLanguageGuide\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/p\u003e\u003c/li\u003e\u003c/span\u003e\u003cspan\u003e\u003cli\u003e\u003cp\u003eNational Comprehensive Cancer Network. NCCN language guidance: Sensitive, respectful, and inclusive language for NCCN publications. [Internet]. 2025 [cited 2025, July 6]. Available from \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://www.nccn.org/docs/default-source/about/nccn-guidance-on-inclusive-language.pdf?sfvrsn=53c8c78f_2\u003c/span\u003e\u003cspan address=\"https://www.nccn.org/docs/default-source/about/nccn-guidance-on-inclusive-language.pdf?sfvrsn=53c8c78f_2\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/p\u003e\u003c/li\u003e\u003c/span\u003e\u003c/ol\u003e\u003c/p\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"bmc-psychology","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"psyo","sideBox":"Learn more about [BMC Psychology](http://bmcpsychology.biomedcentral.com/)","snPcode":"","submissionUrl":"","title":"BMC Psychology","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"stoa","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"cancer, lung cancer, lung cancer stigma, stigma, stigmatised, stigmatisation, family members, experiences, perspectives","lastPublishedDoi":"10.21203/rs.3.rs-7480697/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-7480697/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cem\u003ePurpose: \u003c/em\u003eIndividuals with lung cancer experience significant stigma regarding their diagnosis due to its association with smoking behaviours. To our knowledge, lung cancer sigma has yet to be explored from the perspective of family members. Family members are often the primary caregiver for individuals with lung cancer and as a result may witness firsthand stigmatising behaviours towards their loved ones. Additionally, family members may experience stigma regarding their loved one’s diagnosis due to stigma by association. Thus, the current study sought to investigate their experiences and perspectives of lung cancer stigma.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eMethods: \u003c/em\u003eEight participants were recruited using purposive and snowball sampling. A qualitative, cross-sectional design was implemented using both virtual and in-person semi-structured interviews. Interviews were audio-recorded, transcribed and analysed using thematic analysis.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eResults:\u003c/em\u003eFive themes were identified: \u003cem\u003eCuriosity, or blame? Stereotypical questions about smoking behaviours and its impact, Discrimination and unfair treatment from healthcare providers, Feeling judged by association, Changing cultural and public views of smoking fuels stigma, Cognitive strategies for managing and resisting stigma.\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eConclusion: \u003c/em\u003eFamily members perceived their loved ones to have experienced stigma related to their diagnosis through externalised and internalised stigma. Externalised stigma was perceived through stereotypical questioning, blame, judgements, discrimination and unfair treatment. Family members stated that this led to internalised feelings of guilt and shame. Importantly, family members stated they have also experienced stigma by association through external judgements from family and society and a loss of friendships.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eImplications for Cancer Survivors and Family Members:\u003c/em\u003eInterventions need to be put in place focusing on empathic communication skills for healthcare providers, communication training for family members and interventions focused on helping both survivors and family members cope with the impact of lung cancer stigma. Future research should focus on further examining the experiences and perspectives of family members in order to gain a broader understanding.\u003c/p\u003e","manuscriptTitle":"“You feel like you have a neon light over your head ”: A Qualitative Study Examining the Experiences and Perspectives of Family Members regarding the Stigma of those Diagnosed with Lung Cancer","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-10-10 18:51:36","doi":"10.21203/rs.3.rs-7480697/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2025-11-06T05:05:07+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-10-15T17:09:52+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-10-15T12:47:06+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"103014776653080992709912652326838071561","date":"2025-10-10T11:14:31+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-10-10T10:29:16+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"244598175520567525873066591910232057090","date":"2025-10-02T12:31:40+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"172459706719984189835499525921731730044","date":"2025-09-27T10:44:08+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"164469451028863497685765768577027812446","date":"2025-09-26T19:05:22+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"72665160135728486156542650568186613964","date":"2025-09-26T17:24:33+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2025-09-26T07:42:15+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2025-09-23T10:08:29+00:00","index":"","fulltext":""},{"type":"editorInvited","content":"","date":"2025-09-08T12:06:28+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2025-09-02T22:31:47+00:00","index":"","fulltext":""},{"type":"submitted","content":"BMC Psychology","date":"2025-09-02T22:28:40+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"bmc-psychology","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"psyo","sideBox":"Learn more about [BMC Psychology](http://bmcpsychology.biomedcentral.com/)","snPcode":"","submissionUrl":"","title":"BMC Psychology","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"stoa","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"aa92824a-1029-4ea4-a379-989065e5f6f3","owner":[],"postedDate":"October 10th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"published-in-journal","subjectAreas":[],"tags":[],"updatedAt":"2026-02-02T16:01:16+00:00","versionOfRecord":{"articleIdentity":"rs-7480697","link":"https://doi.org/10.1186/s40359-026-04070-y","journal":{"identity":"bmc-psychology","isVorOnly":false,"title":"BMC Psychology"},"publishedOn":"2026-01-31 15:58:45","publishedOnDateReadable":"January 31st, 2026"},"versionCreatedAt":"2025-10-10 18:51:36","video":"","vorDoi":"10.1186/s40359-026-04070-y","vorDoiUrl":"https://doi.org/10.1186/s40359-026-04070-y","workflowStages":[]},"version":"v1","identity":"rs-7480697","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-7480697","identity":"rs-7480697","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}

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