“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

Abstract

Purpose

Individuals with lung cancer (LC) experience significant stigma regarding their diagnosis due to its association with smoking behaviours. To our knowledge, LC sigma has yet to be explored from the perspective of family members. Family members are often the primary caregiver for individuals with LC 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 LC 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: Stigma through blame: Navigating social assumptions about smoking, Discrimination and unfair treatment from healthcare providers, Feeling judged by association, Contemporary cultural and public views of smoking have fuelled 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 LC stigma. Future research should focus on further examining the experiences and perspectives of family members in order to gain a broader understanding.

Supplementary Information

The online version contains supplementary material available at 10.1186/s40359-026-04070-y.

Introduction

In 2022, lung cancer (LC) was the most frequently reported cancer worldwide, with the global rate of 2.5 million new cases [1]. LC has the highest death rate of all cancers worldwide, with an estimated 1.8 million deaths in 2020 [2]. Smoking is recognised as its leading risk factor [3]. Unfortunately, this has led to a stigma surrounding LC, which is quite pervasive in society, with many viewing people with LC as being responsible for their illness due to smoking being seen as a controllable behaviour [4, 5]. LC stigma can lead to a range of negative impacts on all those affected by LC, even though a substantial proportion of LC survivors have never smoked. A recent review found that, worldwide, approximately 20% of men with LC and up to 50% of females with adenocarcinoma are never-smokers, indicating that the number of never-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 LC [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 LC, 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 LC are often asked “Did you smoke?” after sharing their diagnosis [16]. Oftentimes, when hearing of someone’s LC 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 LC. This stigma may be amplified by LCs’ 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 LC stigma and smoking from the perspective of those with LC. This research has found that LC 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, LC 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, LC stigma has been found to affect both smokers and never-smokers [21]. Some studies found that individuals with a history of smoking may experience a higher degree of guilt, isolation, embarrassment and perceived stigma compared to those who never-smoked [15, 22, 23]. Specifically, in one study, the strongest predictor of self-blame was individuals believing that smoking was the cause of their cancer [19]. However, a more recent systematic review 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 never-smokers [McCann et al., 2025, manuscript under review]. This shows that both smokers and never-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.

As family members are the most important source of support for people with LC and are often their primary caregivers [24], positive family support regarding stigma can lead to better quality of life and psychological outcomes. Previous research involving family members has primarily focused on how their feelings towards the LC 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 have higher levels of anger and less empathy towards them [25]. This can negatively impact the care they provide [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, 26–28]. Furthermore, some family members may even internalise blame for the diagnosis, especially if they are also current or former smokers, and this may further negatively impact their relationship [23].

In spite of this, there is a dearth of in-depth qualitative research regarding how family members experience and respond to LC 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 LC.

To the authors’ knowledge, there is no extant research explicitly examining the impact of LC stigma on the family system. One study which examined the experiences of stigma for individuals with LC 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 LC 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 LC survivors and family members in order to develop supports which may help moderate stigma and improve quality of life for both the LC survivor and their family members. Examining this subject through qualitative research also allows for an in-depth insight into how stigma affects family members through 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:

• I.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?
• II.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 LC 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 six month period and analysis was completed over a two month period in 2025.

Participants & recruitment

A non-probability purposive sampling strategy was used, specifically employing critical case sampling, to recruit family members of individuals with LC. Critical case sampling involves selecting individuals with particular characteristics that are expected to provide especially valuable insight into the phenomenon under study [34]. In this study, participants were recruited on the basis of their familial relationship to the person with LC, with the explicit aim of capturing variation across roles (e.g., spouses, siblings, parents, adult children). This strategy was chosen because experiences of LC stigma were expected to differ across these relational positions. The sampling strategy was guided by the principle of information power [35], recognising that in-depth, information-rich accounts from participants with highly relevant experiential knowledge can provide sufficient data for meaningful analysis, even with a small sample. This aligns with Braun and Clarke’s [36] position that sample size in reflexive thematic analysis should be justified by data richness and analytic depth rather than by concepts such as data saturation.

The inclusion criteria required that participants were over 18 years old, a family member of someone with a LC diagnosis, or someone who had lost a family member due to LC 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. Cancer organisations such as Breakthrough Cancer, the Irish Cancer Society, the Marie Keating Foundation, the Irish LC Community (ILCC) 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. These combined efforts over a sustained period of time reflected the anticipated difficulty of reaching family members of individuals with LC following advice of our colleagues from the ILCC. Despite this extensive recruitment drive, only seven eligible participants volunteered to take part, consistent with these anticipated recruitment challenges. A single additional participant was identified through a controlled instance of snowball sampling, where an existing participant suggested someone from a different familial role. Snowballing was therefore used solely to broaden, rather than narrow, diversity in line with the purposive sampling criteria. When a potential participant got in touch to flag their interest, the first author provided a Plain Language Statement and consent form via email.

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 phone1.

The average length of the interviews was 48 min and ranged from 27 min to 1 h and 9 min. 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 conducted each interview. The first author is a female researcher with experience in qualitative research, who is a family member of an individual who was diagnosed with LC. 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

The first author led the data analysis, which followed Braun and Clarke’s [37, 38] 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 [38]. 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 [38]. 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. To strengthen analytic rigour, we also incorporated procedures informed by consensual qualitative research [39]. The first author completed initial coding and generated early candidate themes. The second author independently reviewed these codes and the associated data extracts. Both authors then met to discuss and refine the coding structure, compare interpretations, and work towards consensus. These discussions functioned as a means of addressing disagreements, ensuring that coding decisions were well-reasoned and grounded in the data rather than individual analytic preferences. 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.

In line with Lincoln & Guba’s [40, 41] 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 LC 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 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 to 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	County	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	Belfast	Father	Non-Small Cell LC, Adenocarcinoma	Stage 4	September 2024	Targeted therapy, Bone strengthener	Alive	20–29	60–69	Not specified	Never-smoker
Susan	Kildare	Mother	Non-Small Cell LC	Stage 4	August 2019	Immunotherapy, Chemotherapy, Radiation	Bereaved	30–39	60–69	Past smoker	Past smoker
Jane	Cork	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	Athlone	Brother	Small Cell LC	Stage 4	August 2023	Chemo, immunotherapy, radiotherapy	Bereaved	60–69	70–79	Not specified	Past smoker
Dean	Dublin	Father	Non-Small Cell LC,	Stage 2	April 2022	Radiation	Bereaved	20–29	70–79	Smoker	Smoker
Annette	Dublin	Husband	Non-Small Cell LC	Stage 2	April 2022	Radiation	Bereaved	60–69	70–79	Smoker	Smoker
Paul	Dublin	Mother	Type not specified	Stage not specified	November 2021	No treatment	Bereaved	Not specified	70–79	Never-smoker	Smoker
Bernadette	Offaly	Husband	Non-Small Cell LC - Adenocarcinoma	Stage 4	September 2023	Chemotherapy	Bereaved	40–49	40–49	Never-smoker	Never- smoker

Note. IDs provided are pseudonyms

The present study identified five themes relating to LC stigma: Stigma through blame: Navigating social assumptions about smoking, Discrimination and unfair treatment from healthcare providers, Feeling judged by association, Contemporary cultural and public views of smoking have fuelled 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 terms of how experiences of stigma may differ depending on demographic variables, we briefly examined the extent to which age, gender and smoking status may have influenced stigma; here, we found no clear differences between participants based on these characteristics.

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.

1. “I could feel my blood boiling”: Stigma through blame: Navigating social assumptions about smoking

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 [LC]. 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 LC”. 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 LC” 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 LC can leave the individual with LC 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 LC 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] LC, 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?””.

• 2. “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 LC. 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 LC 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 LC 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."

• 3. “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 LC. This stigma by association had a direct effect on the participant, showing how familial stigma can cause internal stigma and emotional consequences such as fear, worry or concern:

"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 LC.” 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 others regarding her husband’s diagnosis, demonstrating how a diagnosis can have a direct effect on both the individual with LC and their family. This participant noted how she experienced a family burden regarding her husbands’ diagnosis due to feeling the need to prove his illness to others:

"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 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. This stigma by association reflects the difficulties that a family member may experience due to their loved ones’ diagnosis through social exclusion or isolation:

“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). This suggests that family members of individuals with LC may also experience externalised stigma from others due to shared behaviours that are linked with LC:

“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””.

• 4. “It seems to only apply to LC”: Contemporary cultural and public views of smoking have fuelled 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. […] 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 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 LC being stigmatised and blamed more than those with other cancers. For example, Bernadette (husband, bereaved) perceived that LC is judged more harshly compared to other cancers, particularly when it comes to smoking behaviours:

"I think with LC, 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 LC. 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 LC and has impacted the way people view LC 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 LC]. 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."

• 5.“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 they and their family members learnt ways to manage external stigma associated with LC. Julie (father, alive) indicated that she noticed her father prefixing conversations with the fact that he was a never smoker, as he anticipated it being asked:

“Even when he was telling people, he felt the need to say, “oh, I’ve never smoked.” Which is interesting because… you wouldn’t say that for any other cancer really. But I know that, when he was telling people himself, he would always preface [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 LC 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 LC. I’m not ashamed that she died of LC 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 LC stigma and their perspectives of their loved ones’ experiences. The findings indicate that LC 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: Stigma through blame: Navigating social assumptions about smoking, Discrimination and unfair treatment from healthcare providers, Feeling judged by association, Contemporary cultural and public views of smoking have fuelled 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 of 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 LC 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 never-smokers, leading us to believe that this is a common experience for anyone diagnosed with LC, 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 LC 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 [42], lower quality of life [17] and higher levels of anxiety and distress [43, 44] for those with LC. 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 LC 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 LC 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 LC, even when individuals were never-smokers [14, 45, 46]. This finding is important as poor provider communication is consistently associated with higher stigma [47, 48] 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 LC.

Another key finding was that participants reported stigma by association. Participants described feeling judged by family members and society and experiencing the loss of friendships as a result of this. 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 [29–31]. 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 LC [32] showing that family members also experience stigma by association. They also demonstrate that family members also carry the social burden of a LC diagnosis and emphasises that the whole family experiences LC stigma. These findings highlight the need for support for family members to help navigate LC 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 LC. Participants recalled how smoking was once widely accepted, even among doctors and celebrities, which has been highlighted in previous research [49]. 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 LC, 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 LC 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, LC.

Interestingly, participants described using a range of cognitive strategies to cope with stigma. One mentioned how her loved one pre-emptively identified as a never-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 LC 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 [50]. 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 LC.

In terms of how experiences of stigma may differ depending on demographic variables, as noted, we briefly examined the extent to which age, gender and smoking status may have influenced stigma and found no clear differences between participants based on these criteria. Participants in different age groups reported similar experiences of stigma, both through stigma experienced by association and perceived stigma towards their family members through internalised and externalised stigma. This differs from previous research which suggests that younger individuals with LC experience higher stigma [13, 18, 48, 51, McCann et al., 2025, manuscript under review]. In terms of gender, there was an uneven distribution of male and female participants (six females and two males). Additionally, in terms of individuals with LC, there was six males and two female family members. However, there were no clear gender differences in terms of stigma reported by family members, consistent with previous research [22, 52, McCann et al., 2025, manuscript under review]. We also found no differences in stigma experiences or perspectives reported by current smokers, past smokers or never-smokers. Participants reported similar experiences of stigma, both through stigma by association and perceived stigma towards their family members. In terms of smoking status of the individual with LC, as expected, participants reported family members who were current or former smokers being blamed for their smoking history causing their LC. However, individuals who never smoked also experienced stigma due to their diagnosis. This finding is reflected in a systematic review by the current authors suggesting that there are no significant differences between smoking history and stigma for individuals with LC [McCann et al., 2025, manuscript under review].

Implications for LC survivors

These findings have several implications for individuals with LC and their families. The strategies identified in this study can inform future interventions focused on coping with stigma. First, participants described clear communication challenges, both when navigating stigmatising comments from the public and when discussing smoking histories. Based on these insights, targeted communication-skills interventions could be developed that include: (1) strategies for initiating conversations about smoking to pre-empt blame; (2) rehearsed responses to stigma; and (3) confidence-building exercises to help family members advocate for the survivor during difficult interactions with health professionals. These interventions could be delivered as brief workshops within cancer support centres or integrated into routine survivorship care plans.

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 LC survivors through helping individuals accept difficult emotions, challenge internalised stigma, and improve emotional wellbeing [50, 53, 54]. 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, a practical next step is the development and piloting of family-inclusive stigma-focused interventions that provide structured space to process guilt, fear, and blame dynamics within the family system.

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 [55]. Overall, they found less negativity, increased communication, reduced psychological distress and avoidance, lower depression and greater relationship satisfaction compared to control groups [55]. However, they only focused on couples or families with children with cancer in general and did not examine other familial relationships. A concrete recommendation is to adapt these interventions specifically for LC, ensuring relevance to the unique stigma and smoking-related challenges faced by these families.

Future work focusing on educational campaigns aimed at reducing negative public perceptions of LC need to be widely implemented to tackle LC stigma. There has been a few initiatives which directly targeted public stigma around LC. Two campaigns which were implemented were LC 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 LC, educate people about the risk factors and show that never-smokers are also affected by LC 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 LC survivors and family members’ stories in order to create awareness and break down stereotypes.

Additionally, future work needs to focus on providing structured communication training for healthcare providers in order to avoid judgemental conversations and to encourage empathetic conversations. Guidelines from the International Association for the Study of LC in 2021 [56] and the National Comprehensive Cancer Network in 2025 [57] 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; such guidelines need to be implemented in healthcare settings through structured communications training which encourages the use of this person-first language when dealing with LC survivors and their families. Such training should go beyond single-session workshops, which, as demonstrated in prior research, may increase patient satisfaction but are unlikely to meaningfully affect stigma or perceived empathy long-term [47]. In line with the current findings, future training programmes could incorporate scenario-based modules, reflective practice discussions, and standardised communication checklists that help ensure consistent, bias-free interactions across the multidisciplinary team. Effective communication training should also explicitly integrate the perspectives of both survivors and their family members so that healthcare providers better understand the relational and emotional contexts that shape how information and interactions are received. This could be achieved through patient- and family-led components, co-designed communication scenarios, and structured feedback processes in which family members comment on the empathy, clarity, and overall supportiveness of provider interactions. Such an approach would help ensure that communication training is responsive, inclusive, and more likely to address the factors contributing to stigma within healthcare settings.

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 LC stigma. Another strength of this study is that it included both smokers and never-smokers in terms of both the participants and those with LC, 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, 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 LC, three who had a husband with LC and one who had a sibling with LC. However, some familial perspectives may be underrepresented, such as wives or children; future studies should explore additional recruitment pathways to broaden participation. Additionally, there was some variation in the timing of the diagnosis, with the timeframe varying from 2019 to 2024. Within this timeframe, some participants were bereaved and this may have biased the sample. Furthermore, in terms of ethnicity, the sample was not diverse, with the majority of participants being Irish and one participant being from Northern Ireland, which potentially limits the generalisability of the results. 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 LC stigma: Stigma through blame: Navigating social assumptions about smoking, Discrimination and unfair treatment from healthcare providers, Feeling judged by association, Contemporary cultural and public views of smoking have fuelled 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 LC 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 LC stigma.

Authors’ contributions

Sarah McCann: Conceptualisation, data curation and design, data analysis and interpretation, original manuscript preparation, writing, review and editing. Simon Dunne: Conceptualisation, data curation and design, supervision, interpretation, manuscript review and editing.

Funding

This study was self-funded. No funding was received for conducting this study.

Data availability

Any NVivo material representing the thematic analysis process at different stages of coding can be requested from the first author.

Declarations

Ethics approval and consent to participate

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.

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.

Competing interests

The authors declare no competing interests.