Emotions and lung cancer screening: Prioritising a humanistic approach to care

Abstract

Low‐dose computed tomography lung cancer screening has mortality benefits. Yet, uptake has been low. To inform strategies to better deliver and promote screening, in 2018, we interviewed 27 long‐term smokers immediately following lung cancer screening in Australia, prior to receiving scan results. Existing lung screening studies employ the Health Belief Model. Reflecting growing acknowledgement of the centrality of emotions to screening uptake, we draw on psychological and sociological theories on emotions to thematically and abductively analyse the emotional dimensions of lung cancer screening, with implications for screening promotion and delivery. As smokers, interviewees described feeling stigmatised, with female participants internalising and male participants resisting stigma. Guilt and fear related to lung cancer were described as screening motivators. The screening itself elicited mild positive emotions. Notably, interviewees expressed gratitude for the care implicitly shown through lung screening to smokers. More than individual risk assessment, findings suggest lung screening campaigns should prioritise emotions. Peer workers have been found to increase cancer screening uptake in marginalised communities, however the risk to confidentiality—especially for female smokers—limits its feasibility in lung cancer screening. Instead, we suggest involving peer consultants in developing targeted screening strategies that foreground emotions. Furthermore, findings suggest prioritising humanistic care in lung screening delivery. Such an approach may be especially important for smokers from low socioeconomic backgrounds, who perceive lung cancer screening and smoking as sources of stigma and face a higher risk of dying from lung cancer and lower engagement with screening.

What is known about the topic

• Rates of uptake for LDCT lung cancer screening are low, with disparities noted amongst long‐term smokers identifying as female and from low socioeconomic status backgrounds

• Emotions underpin decisions and experiences of cancer screening (e.g. breast, bowel)

• Peer workers have been found to support uptake of cancer screening in targeted populations

What this paper adds

• Relational feelings of fear and worry (e.g. about telling family) underlie lung screening decisions and experiences

• Because many female participants smoked in secret, peer workers may pose a risk to confidentiality

• Smokers—as a stigmatised group—described feeling cared for through lung screening; thus, campaigns and practice should prioritise attending to smokers' social and emotional needs during lung screening

1. INTRODUCTION

Lung cancer, responsible for one‐fifth of cancer deaths (1.76 million) worldwide in 2018 (McCutchan et al., 2020; WHO, 2018), is often diagnosed at advanced stage, which contributes to its high mortality (Patel et al., 2012). Low‐dose computed tomography (LDCT) lung cancer screening reduces mortality through early detection (Aberle et al., 2011; Koning et al., 2020). Yet, where it is available, screening uptake has been low. Of those eligible, 4.4% participated in a U.S. lung screening program implemented in 2015 (Richards et al., 2019). Those most at risk of dying from lung cancer—long‐term smokers of low socioeconomic status—are least likely to access screening (Ali et al., 2015; McCutchan et al., 2020; Quaife et al., 2020; Zhang et al., 2020). Gender disparities may also be present, with lung screening trials generally recruiting fewer women than men (Quaife et al., 2020).

Research on barriers and facilitators to lung cancer screening is limited (Raz et al., 2019).

Research from the U.S. and U.K. suggests smokers decline participation due to lack of awareness, inconvenience, low perceived benefit, cost and mistrust of the healthcare system (Carter‐Harris et al., 2015; Patel et al., 2012; Raz et al., 2019). Some studies emphasise stigma and worry, with smokers impacted by concerns about results and judgemental interactions with health professionals (Carter‐Harris et al., 2015; Kummer et al., 2020; Quaife et al., 2017; Raz et al., 2019). Beyond worry, however, few studies focus on emotion in studying engagement with lung cancer screening.

With the intention of informing future design, development and evaluation of targeted interventions, this study examines participants' emotionally imbued experiences of lung screening. Drawing on critical health scholarship, as well as theories of emotion from psychology and sociology, we offer an abductive thematic analysis of participants' experiences of low‐dose computed tomography lung screening in Australia and call for humanistic approaches to lung screening interventions and delivery which prioritise care.

2. BACKGROUND

Past research on lung cancer screening experiences, and in particular research aligned with the Health Belief Model, has focused on attitudes, beliefs and knowledge as barriers and facilitators to screening uptake (Carter‐Harris et al., 2015; Patel et al., 2012) and cessation following screening (Kaufman et al., 2018). The Health Belief Model is a well‐recognised behavioural science theory that has been applied to many health behaviours, particularly disease prevention and screening (Glanz & Bishop, 2010; Juniper et al., 2004) and posits that perception of risk, risk severity, benefits, barriers and self‐efficacy, combined with modifying factors (e.g. demographic variables like age) and cues to act, determine health behaviour change (Champion & Skinner, 2008). For example, an interview study of individuals eligible for a UK lung cancer screening trial indicated that ‘practical issues’ and ‘cognitive (risk/benefit) judgements underpinned individuals’ decision‐making regarding participation in screening (Patel et al., 2012). Focus group data with long‐term smokers—including those who had or had not participated in the U.S. lung screening program—found risk assessment to be a driver and perceived stigmatising judgements from clinicians to be a barrier (Carter‐Harris et al., 2015). Surveys and interviews with smokers from low socioeconomic backgrounds in the UK also identified stigma and blame as screening deterrents, along with low perceived benefit (Quaife et al., 2017).

Although an influential framework for understanding lung screening engagement, the Health Belief Model is atomistic and focused on individuals' perceptions of risk and enablers rather than the economic, environmental and relational contexts shaping such perceptions (Orji et al., 2012). Such a framework lowlights the social context in which benefit perceptions take place, narrowing the focus to the individual. In treating humans as calculative, the Health Belief Model discursively positions lung cancer screening—and smoking—as an individual moral choice (Foucault, 2020; Kröner & Beedholm, 2019), supporting critiques that this model limits appreciation of sociocultural, environmental and emotional forces underpinning decision‐making (Baum, 2015), despite growing evidence of the centrality of emotions to reasoning and risk assessment (Damasio, 1994; Sobkow et al., 2016; Wettergren, 2019). Such considerations are important for developing strategies to increase screening uptake, especially with recognition that equitable screening access is a priority for future lung screening programs (Cancer Australia, 2020; Henderson et al., 2021).

Lung cancer risk due to smoking is linked to lower socioeconomic status, less access to healthcare, rural dwelling and Indigenous ethnicity (Rankin et al., 2020). As mentioned above, there may also be gender disparities, with women underrepresented in lung screening trials (Quaife et al., 2020). Whilst such disparities potentially reflect higher smoking rates in men compared to women (Greenhalgh et al., 2022), they are somewhat surprising given findings that men are generally less willing to participate in cancer screening (Davis et al., 2012). Conceptual models prioritising perception risk overshadowing the physical, social, economic and political forces related to smoking and lung cancer screening (Ross et al., 2018; Thirlway, 2020) and risk equating social injustice and vulnerability with ‘weakness of character’ (Kröner & Beedholm, 2019). Attending to emotions, especially conceptualisations of emotion as situated within a sociocultural setting, can foreground these embodied, relational and political forces (McNaughton, 2013). The individualistic focus of the Health Belief Model has prompted calls for further research into emotions in lung screening engagement (Kaufman et al., 2016; Park et al., 2014), and for more nuanced approaches to conceptualising emotions—especially guilt and shame—in understanding behaviours related to addiction (Snoek et al., 2021). Further, it highlights the imperative for a greater appreciation of the power of accepted knowledge frameworks in positioning patients as compliant or non‐compliant, a process which may then undermine efforts to work with rather than on patients (Kröner & Beedholm, 2019; Pratt et al., 2021). To better attend to the economic and political significance of smoking and screening, this study explores the socioemotional dimensions of Australian smokers' experiences of lung screening, drawing on theories from psychology, sociology and critical health scholarship.

Emotions have been found to be central to other forms of screening. Fear, embarrassment and disgust predict a lower likelihood of bowel screening (Reynolds et al., 2018). Desires to avoid discomfort and assuage worry accompany breast screening participation (Long et al., 2019). Trust and relatability, fostered through support from peer workers (i.e. community members who work or volunteer to translate the relevance of health interventions) in culturally, linguistically and sexually marginalised communities, can improve the uptake of cancer screening and related interventions (Drysdale et al., 2021; Payne et al., 2021). In the lung cancer screening context, worry and fear of a cancer diagnosis have been found, often implicitly, to underpin avoidance or participation (Ali et al., 2015; Carter‐Harris et al., 2015; Patel et al., 2012; Quaife et al., 2018; Quaife et al., 2020; Raz et al., 2019). A range of positive and negative psychological responses, including anxiety, have been noted by lung cancer screening participants (Kummer et al., 2020). Despite these findings, few if any studies—and none from Australia—have taken a nuanced approach to conceptualising and studying emotions in relation to lung cancer screening, limiting understanding of emotional motivations and experiences in this context.

Within psychology, emotions are seen as internal states comprised of cognitive, neurochemical, physiological and behavioural responses to environmental stimuli (Frijda, 2000). Recent research suggests emotions are more socially constructed, culturally diverse and neurologically varied than this classic definition implies (Feldman‐Barrett, 2017) and more complex than the commonly perceived set of universal basic emotions: anger, disgust, fear, joy, sadness and surprise (Ekman & Friesen, 2003).

Within sociology, emotions are understood as inevitable and relational phenomena, intimately connected to social structures, with identity and status affecting how individuals understand, anticipate and experience emotions (Barbalet, 2002; Denzin, 1990; Lively, 2002). In contrast to dualist conceptualisations of emotions as antithetical to rational decision‐making, calls are growing to recognise emotions and cognition as intersecting (Damasio, 1994; Wettergren, 2019), with emotions implicated in motivating action (Snoek et al., 2021), and in pushing individuals towards or away from the personally, socially, culturally and politically meaningful (Ahmed, 2015).

Within recent critical health scholarship, movements towards humanistic approaches to care—and the explication of relational aspects of these models—foreground emotions as key elements of care‐giving relationships. This research is often situated within broader healthcare cultures that have been found to be individualistic, atomistically positioning patients as responsible for their own well‐being (Hutchison & Holdsworth, 2021; Kröner & Beedholm, 2019; Pluut, 2016). Humanistic approaches move away from a focus on patient compliance and treatment outcomes to prioritise relational co‐presence and authenticity, where compassion and non‐judgement foster feelings of safety and trust (Mescouto et al., 2020; Pratt et al., 2021). Social justice is central to this shift, with humanistic approaches to care acknowledging the moral undertones and power inequities within traditional healthcare relationships, along with the structural and emotional injustices implicated in (re)producing social vulnerability (Kröner & Beedholm, 2019; Setchell et al., 2021).

Drawing on this body of psychological, sociological and critical health scholarship, emotions are conceptualised in this study as complex cognitive, physiological and relational phenomena: embodied sensations and expressions, shaped by social and cultural cues, labels and norms, that underpin reasoning and motivate individuals to (inter)act (Frijda, 2000; Patulny & Olson, 2019). Working from this more relational understanding of emotions, we explore the socioemotional dimensions of Australian smokers' experiences of lung screening and ask the research questions: What emotions are experienced before, during and following a lung cancer screening scan? What are the implications for lung screening campaigns and practice?

3. MATERIALS AND METHODS

In conjunction with the International Lung Screening Trial (ILST) conducted across Australia, Canada and Hong Kong (Lim et al., 2020; Tammemägi et al., 2022), semi‐structured interviews were undertaken with smokers undergoing LDCT lung screening at the ILST screening site in Brisbane, Queensland, Australia. A nested qualitative design fostered access to this cohort in a setting where lung screening remains limited to research trials (Olson et al., 2022). Semi‐structured interviews cultivate in‐depth understanding of experiences without overlooking meaning and context (Denzin & Lincoln, 2005; Quaife et al., 2017) and can foster nuanced understandings of emotions (Snoek et al., 2021). Approval was granted by hospital and university human research ethics committees (Lim et al., 2020).

3.1. Participants and recruitment methods

ILST participants were recruited through media advertisements inviting people aged 55–80 with a smoking history (current or former, ≥30 smoking pack‐years). From the Brisbane sample of 595, consecutive participants were invited to be interviewees. Invitations were made by telephone at the time of scheduling their screening. Patient information leaflets were mailed to interested participants. Semi‐structured interviews took place minutes after their LDCT screening and prior to receiving their scan results (delivered by letter several weeks later to their GP). All participants provided written informed consent on the day.

3.2. Interviews

Forty‐five‐minute individual face‐to‐face interviews with one of seven interviewers from the research team (backgrounds in nursing, medicine and psychology) were facilitated between May and August 2018. Guided by open‐ended questions, the interviews enabled collection of relevant and reflective data whilst allowing participants to explore themes in their own words (Ayres, 2008). Questions were divided into three sections (see Table 1): (1) motivations for volunteering for the study, and emotions prior to and after lung screening; (2) smoking addiction, narratives and emotions regarding smoking and smoking cessation; and (3) self‐assessment of their lung cancer risk, allowing discussion of concerns about prolonged smoking. Such a broad focus allowed us to situate participants' emotions related to screening, aligned with our conceptualisation of emotions as embodied sensations and shaped by sociocultural norms. Interviews were audio recorded, transcribed and checked for accuracy prior to analysis.

TABLE 1.

Selected questions from the interview guide

Screening

What emotions have you experienced in the lead up to screening? When you think about getting the scan results in a few weeks, what's going through your mind? Who do you think benefits from screening?

Smoking

How does smoking make you feel? Has that feeling changed as you got older? What gets in the way of quitting? How does society treat smokers these days? How does that make you feel?

Risk

What happens when you think about lung cancer? Have you been worried about your health? Has smoking affected your health?

3.3. Qualitative analysis

Data were analysed thematically, following well‐established practices of inductive, abductive and deductive analysis. This approach aligns with interpretivist assumptions of knowledge and social reality as co‐constructed (Braun & Clarke, 2012; Denzin & Lincoln, 2005; Richards, 2009). Authors—with training in sociology, pharmacy, psychology and medicine—first familiarised themselves with the data, reading transcripts individually and making typed annotations. We then discussed our interpretations across the interdisciplinary research team, supporting ontological and educative authenticity (Lincoln & Guba, 2007). Next, two members of the research team coded five transcripts together using Nvivo (QSR International, v12 2019), working from descriptive to topic and analytic coding—including reflecting on interpretations with theory. Drawing on the collaboratively initiated codebook, one author progressed through an inclusive approach to coding, with each data display immersed in sufficient context to maintain its emotional nuance and meaning (Bryman, 2001). Given increasing rates of lung cancer diagnosis amongst women, gender was a focus of analysis (Brown & Cataldo, 2013; Jeon et al., 2020). Care was taken to label coded text according to inferred emotions. Further attending to educative authenticity, such inferences were abductively guided by established theories on emotion (Denzin, 1990; Ekman & Friesen, 2003), allowing us to bring these theories to our interpretation and coding. A codebook on the subtheme of emotions was developed and discussed across the team to ensure themes accurately represented analysis. Discrepancies in interpretation were resolved through discussion.

4. RESULTS

We approached 32 participants; 28 consented to participate in interviews. One did not attend for screening due to illness. Theoretical saturation was reached after 27 interviews (Guetterman, 2015). The sample approached a gender balance (40.7% female) with participants aged from 55 to 76 years (mean 62.9; Table 2). Findings presented here relate to one overarching theme—emotions—with several subthemes. Feelings identified from the interview data included ambivalence, anger, anxiety, apprehension, contempt, disappointment, disgust, dread, fear, frustration, grief, guilt, happiness, hope, isolation, stress, joy, pride, resignation, sadness, shame and worry. In the following section, emotions most relevant to screening are reported. First, participants' smoking history and experiences of smoking‐related stigma offer context to their emotions, often associated with shame, and resistance to these feelings. Second, participants' emotions are organised temporally: before, during and after the scan. References following direct quotes represent participant numbers (P), sex (F/M) and age.

TABLE 2.

Demographic characteristics of interview participants

Characteristic	Interview participants (n = 27)
Gender, % (n)
Male	59.3% (16)
Female	40.7% (11)
Age in years, % (n)
55–59	37.0% (10)
60–64	18.5% (5)
65–69	33.3% (9)
70–74	7.4% (2)
75–79	3.7% (1)
Marital status, % (n)
Married/civil partnership	70.3% (19)
Single/divorced/widowed	29.6% (8)
Ethnicity, % (n)
Caucasian	92.5% (25)
Indigenous Australian	7.4% (2)
Education level, % (n)
Did not complete high school	37.0% (10)
High school	7.4% (2)
Certificate III/IV	25.9% (7)
Diploma/advanced diploma	7.4% (2)
Bachelor degree	14.8% (4)
Postgraduate degree	3.7% (1)
Unknown	3.7% (1)
Employment status, % (n)
Employed	51.8% (14)
Retired/carer/homemaker	44.4% (12)
Unemployed	0% (0)
Disabled	3.7% (1)
Smoking history, mean (SD)
Age started smoking daily	15.4 (2.1)
Current cigarettes/day	15.8 (10.4)
Pack years a	50.4 (23.6)

^a One pack year is equal to smoking 20 cigarettes every day for a year.

4.1. Smoking history and stigma

All participants were current smokers. Almost all (26) reported smoking their first cigarette before their 18th birthday. Many participants' parents were smokers. All but two had attempted quitting in the past, using a variety of methods.

In discussing quit attempts, 11 of 27 interviewees described emotions, such as frustration, disappointment and stress, at their inability to quit smoking, for smoking relapse after quitting, or for starting smoking at all. Interestingly, acknowledgement of nicotine addiction was rare. In discussing struggles to maintain cessation, participants emphasised individual responsibility, viewing failed attempts as evidence of ‘weakness.’

As current smokers, many participants (15 of 27) described feeling stigmatised. Metaphors of illness, exile and burden, such as ‘leper,’ ‘social pariah,’ ‘outcast’ (P2, M, 63) and ‘scourge on society,’ were frequently employed to illustrate perceived treatment by others, and feelings of shame and isolation. At times, feeling negatively judged as a smoker was compounded with judgements related to race and class. One participant, for example, described the general view of smokers in Australia as ‘scum, dirty, low socioeconomic… Poor white trash’ (P21, F, 65).

For some, stigma associated with smoking and lung cancer left them feeling unsupported; conversely, lung cancer screening made them feel cared for.

It is nice for someone to have interest in smokers [through screening] because we are … not too highly regarded. As soon as someone gets lung cancer, ‘oh, I bet you they were a smoker,’ like you have done it to yourself… It is nice for someone to take an interest in people who have such an addiction. (P20, F, 57)

Responses to stigma varied by gender. More women (7 of 11) than men (2 of 16) reported concealing smoking, lying to family about quitting and feeling smoking‐related shame. Such stigma also appeared to be absorbed or deflected differently, with women internalising stigma, and changing where they smoked:

It is my own fault… people make you feel like you are dirty because you do it, like… ‘ewww smokers’… I just feel like I'm a dirty person now… Most people do not even know I smoke because it's like something you do in private. (P23, F, 58).

Men by contrast seemed to acknowledge and defiantly reject stigma:

[If] I'm having a cigarette, somebody walks past me and says *coughs*…. Well piss off…. just leave me alone…. I do not need somebody ‘oh, you're not supposed to be smoking here.’…. if I want to have a cigarette, I will have a cigarette. (P10, M, 62).

4.2. Emotions prior to screening

Fear, worry, guilt and sadness were common responses to the question: what prompted you to volunteer for the lung screening study? Participants described cancer worries ‘always in the back of your brain’ (P22, M, 56) as fuelling their fear. Several participants described a general fear of cancer or ‘the unknown’ (P9, M, 71); others recounted a specific fear of ‘horrible’ debilitating symptoms such as ‘struggling to breathe’ (P2, F, 59) and the short prognosis associated with advanced lung cancer, ‘All the smokers get it…. there is a bad strain of cancer where you've only got three months. That's the one that really scares me’ (P23, F, 58).

Reasons for volunteering for screening included assuaging fears through receiving a negative scan result or an early positive but treatable result, and alternatively confirming their fears, allowing for preparation before death. P23, for example, said, ‘I know it's [cancer] going to get me,’ but wanted to confirm the diagnosis at an early stage. ‘I saw it in my dad …. I just thought [through screening] I would like to know before he knew’ (P23, F, 58). In addition to confirming fears, screening was a way of attending to feelings of guilt for not quitting, and protecting her son from the sadness she experienced in caring for her father through lung cancer.

My son is 17… and mummy is still smoking. He watched his Pop die horrendously [of lung cancer] and I do not want to do that to him… That's why I would like to know. That's why there should be the screening. I would never let him see me the way I saw my dad. (P23, F, 58).

4.3. Emotions during screening

Participants recounted mild positive emotions relating to the screening itself, with most (23 of 27) describing the process as ‘fine’, ‘easier than expected’ or ‘excellent’. One participant found the lung function (breathing) test difficult: ‘That was harder for me than going through a breathalyser and I went through a breathalyser… last year and that was damned difficult’ (P16, F, 67). A minority recalled feeling ‘anxious’ (P23, F, 58) or ‘apprehensive’ (P24, M, 63) about breathing tests and the scan itself. P24 worried that ‘my lungs are going to be shot,’ whilst P23 reflected that the ‘American accent’ within the CT scan made her ‘feel like you are in a movie’ (P23).

4.4. Predicted emotions following screening result

When asked to predict their reactions to their screening results, responses ranged from dread and fear, to resignation, ambivalence, hope and joy. For those who feared their scan would show signs of cancer, and believed any cancer diagnosis to be ‘my own fault for smoking’ (P25, F, 59), they dreaded the anticipated guilt and shame that they would experience in disclosing the diagnosis to family.

If I was diagnosed with lung cancer I think I would feel a lot of self‐loathing… that I inflicted it upon myself… I hope that I never have to go through that. To… tell my kids that I had lung cancer would be 100 times worse than if I had cancer anywhere else because I would feel that yes, it is my fault. (P2, F, 59)

Some were fearful that implied blame would make them undeserving of care.

It's my own fault. You see in the papers where certain doctors will not operate on anyone because they have been a smoker. So, it's like I would not go ask for any help because doctors say, “well she's been a smoker, why should we help her?”… [And this makes me feel] as if I'm not worthy of being helped because I did it to myself… *crying and sniffling*. (P27, F, 57)

Three participants denied having strong emotions about the expected scan outcome. Such ambivalence was tied to feelings of resignation about the perceived inevitable outcome of a lung cancer diagnosis.

Am I worried about it [the screening results]? No, I'm expecting the worst… cancer. (P4, M, 66)

Others were less certain of their expected scan results, but predicted that a clear scan would prompt celebration and joy.

Well it could go either way…. I'm dealing with other things in my life so I will just wait for the bad news or ‘hip‐hip!’ when the good news comes. (P23, F, 58).

Other participants were ‘dealing with other things’ (P23, F, 58), which overshadowed concerns about their own health. P21's sadness and grief are poignantly illustrative.

For a lot of people, it would probably be that [screening] would make them focus more on potential cancers… make them worry more and maybe some of them might become a little bit obsessed with it and have it affect their sleeping, but none of that has been the case with me because our son died 2 years ago and that's all I could think about, not this…. So any worries I have are nothing to do with potential psychological effects of the screening. (P21, F, 65)

5. DISCUSSION

Past research, drawing on the Health Belief Model, conceptualises screening decision‐making as calculative: based on perceptions of risk and benefit. Drawing on critical health scholarship, psychological and sociological theories of emotions, this study offers the first Australian study of smokers' emotions related to lung cancer screening. Findings confirm previous research (Patel et al., 2012) suggesting that the scans themselves are emotionally uneventful, whilst offering novel insight into smokers' emotions prior to and following screening, with implications for practice.

Findings should be interpreted with reference to study limitations. All participants were from the Brisbane ILST site. Due to geographic distance, rural and remote residents are underrepresented. Emotional experiences of eligible but unscreened smokers are yet to be explored. Despite limitations, we have identified important insights regarding the emotional dimensions of lung cancer screening. Findings indicate that: (1) responses to stigma may be gendered; and (2) relationally embedded fear and worry may underlie smokers' decisions to participate in lung screening. These findings have important implications for involving peer consultants and emotions in the developing strategies to encourage lung screening uptake and for prioritising care within lung screening practice.

5.1. Smoking history: Frustration and stigma

In describing their smoking histories and quit attempts, frustration and stigma dominated, stemming from convictions of individual responsibility. Despite most becoming smokers before adulthood, few participants emphasised addiction. This is likely an unintended outcome of public health campaigns and policies emphasising smoking as an individual choice (Carter‐Harris et al., 2015; Quaife et al., 2017), reflecting the power imbued within dominant discursive framings of smoking as an individual ‘lifestyle choice’, rather than a physiological and social phenomenon (Fullagar, 2002; Kröner & Beedholm, 2019). Such convictions of individual responsibility can be linked to feelings of ‘weakness’ (Kröner & Beedholm, 2019) that perpetuate shame and stigma.

5.2. Gendered stigma

Internalisation of stigma was more pronounced amongst women in this study, adding to previous research (Brown & Cataldo, 2013). Females hid their smoking and smoked in secret; by contrast, males defiantly rejected stigma. Such gendered differences may reflect women's overrepresentation in care‐giving roles, and perceived responsibility for family health (WHO, 2016), which suggests they are expected to be oriented to the needs of others (Graham, 1987; Wigginton & Lafrance, 2016), whilst smoking represents self‐prioritisation. Alternatively, gender differences may reflect women's relative powerlessness. Goffman (1968) argues that people who are less able to meet society's ideals will hide rather than change undesirable behaviour (Kröner & Beedholm, 2019). Building on these findings, further research should investigate if and why female smokers are more likely to hide their smoking, and, as such, if female smokers are more likely to avoid screening: an important consideration given that men outnumber women in lung cancer screening research trials, yet the mortality benefits may be even greater in women than in men (Koning et al., 2020).

5.3. Emotions, relationality and screening uptake

Contrary to UK‐based studies (Patel et al., 2012; Quaife et al., 2017), feelings of fear, worry, sadness and guilt motivated (rather than deterred) smokers in this study to engage with lung screening. Contrasting with the health‐confirming motives of women undergoing breast screening (Long et al., 2019), many smokers in this study sought screening to face fears—especially after witnessing the ‘horrible’ effects of advanced lung cancer—and confirm an anticipated cancer diagnosis, allowing for treatment or preparation before death (Quaife et al., 2017). Such findings demonstrate the relationality of emotions experienced in the context of screening. Emotions of fear and worry related to screening were not solely personal, but interpersonal; participants described fears of disclosing a lung cancer diagnosis to family and desires to protect or prepare family for the associated emotions. These findings support recent calls to appreciate the capacity for emotions, such as guilt and shame, to undergird salutogenic and pathogenic behaviours (Snoek et al., 2021) whilst also emphasising the importance of relationships and context: emotional barriers and facilitators are not necessarily universal or solely internal (Ahmed, 2015; Denzin, 1990).

5.4. Implications for campaigns to improve lung screening uptake

Findings have important implications for targeting lung screening campaigns. Peer workers have been shown to be vital in marginalised communities: reducing health inequities and increasing the relevance and uptake of health interventions, such as cancer screening (Ahmad et al., 2017; Payne et al., 2021). However, like concerns about the potential to be ‘outed’ by peer workers in LGBTQ communities (Drysdale et al., 2021), the risk to confidentiality for ‘secret’ female smokers in our study limits the feasibility of this approach in lung cancer screening. Peer workers might deter participation, due to smokers' fears that the peer worker would expose them within their community as smokers. Instead, we suggest involving peers (based on intersecting social identities: socioeconomic status, location, race, ethnicity, gender and sexuality) as consultants (Drysdale et al., 2021). Like patient advisory boards, peer consultants could work to tailor the emotional subtext and improve the relatability of targeted lung screening advertising campaigns.

Foregrounding emotions in such campaigns may be especially important for smokers from low socioeconomic backgrounds, for whom the risk of death from lung cancer is highest (Zhang et al., 2020) and for whom perceived stigma and blame pose a screening deterrent (Quaife et al., 2017). Incidental emotions (elicited by one situation and extended to another), such as frustration with smoking, may affect screening participation decisions, and may be particularly important for people with low numeracy for whom numerical expression of risk has little meaning (Mazzocco et al., 2019). Following findings presented here and from colorectal cancer screening (Gavaruzzi et al., 2018), we suggest that campaigns should attend to emotions. Testimonials prioritising emotions (Quaife et al., 2020), care and support, for example, may help to allay fears that ‘I'm not worthy of being helped because I did this to myself’ (P27).

5.5. Implications for lung screening practice

Our findings also have implications for lung screening practice, suggesting the importance of humanistic approaches to care. Beyond individual risk assessment (Carter‐Harris et al., 2015; Patel et al., 2012), care was an implicit feature of lung screening—with participants displaying intense emotion in describing gratitude to clinicians showing ‘an interest in people who have such an addiction [smokers]’ (P20) who are often regarded as ‘not worthy of being helped’ (P27). Thus, screening is more than an opportunity for early diagnosis or individualised care (Carter‐Harris et al., 2015; Long et al., 2019); it is an opportunity to acknowledge the socioemotional and relational forces underpinning smoking and lung screening and help smokers to feel cared for. Smokers may feel more motivated to interact in a context imbued relationally and affectively with care: a setting where patients' emotional, social as well as physical needs are prioritised (Innes et al., 2018; Pratt et al., 2021).

Pairing lung screening with care that attends to smokers' social and emotional needs, however, requires a shift away from individualistic frameworks, such as the Health Belief Model, which start from a clinician's definition of ‘correct’ health behaviour and use the language of patient (non‐)compliance (Kröner & Beedholm, 2019; Pratt et al., 2021). Through the stigma they provoke, such atomistic approaches are implicated in ongoing power differences between patients and clinicians that potentially exacerbate pathogenic health behaviours such as smoking (see Kröner & Beedholm, 2019; Ross et al., 2018). Citing government‐funded studies and reports from Denmark (The Council for Socially Disadvantaged, 2009, 2014), Kröner and Beedholm (2019, p. 2) argue that patients who are marginalised, including smokers, ‘often feel stigmatized and are met with a condescending attitude when they are in contact with the healthcare system. These lived experiences are instrumental in maintaining these individuals in what is characterised as poor health behaviour.’ Adopting a humanistic approach which works with, rather than on smokers (Pratt et al., 2021) to prioritise care may help to destabilise current patterns and encourage smokers, through lung screening, to feel more supported and deserving of care.

Adopting a humanistic approach to the care accompanying lung screening is particularly important for vulnerable (Kröner & Beedholm, 2019) or grieving smokers, for whom more immediate concerns may take precedence. Physical health and smoking cessation may not be a person's primary concern, as illustrated by P21's feelings of ambivalence towards their screening outcome, due to ongoing grief. Smoking is strongly associated with mental health disorders (Prochaska et al., 2017) and sadness predicts current smoking as well as smoking relapse (Dorison et al., 2020). Thus, for some smokers, pairing lung screening with care and emotional support may be as important as cessation counselling.

6. CONCLUSION

Lung cancer screening trials demonstrate mortality benefits, yet screening engagement is low. Emotions are an important but neglected facet of screening experiences. As Australia and other countries move towards coordinated lung screening efforts (Abeyweera et al., 2021; Cancer Australia, 2020), understanding the emotional context, and the social environments in which emotions related to lung screening unfold, can inform screening recruitment strategies and improve the low rates of uptake seen to date. Importantly, developing targeted campaigns and delivering lung screening that works with smokers to attend to their social and emotional needs may help to encourage better engagement by countering feelings of stigma and undeservedness, particularly amongst smokers from low socioeconomic backgrounds.

AUTHOR CONTRIBUTIONS

Rebecca E. Olson: Conceptualisation, Formal Analysis, Writing – Original Draft, Supervision, Funding Acquisition. Lisa Goldsmith: Formal Analysis, Writing – Original Draft, Funding Acquisition. Sara Winter: Formal Analysis, Writing – Review & Editing. Elizabeth Spaulding: Writing – Review & Editing, Project Administration. Nicola Dunn: Formal Analysis, Writing – Review & Editing. Sarah Mander: Formal Analysis, Writing – Review & Editing. Alyssa Ryan: Formal Analysis, Writing – Review & Editing. Alexandra Smith: Writing – Review & Editing. Henry M. Marshall: Conceptualisation, Formal Analysis, Investigation, Writing – Review & Editing, Funding Acquisition.

CONFLICT OF INTEREST

All authors declare that they have no conflicts of interest.

ETHICS APPROVAL STATEMENT

Human Research Ethics Committee approval was granted through both the hospital (HREC/17/QPCH/290) and university (2018000536) supporting the project.

Olson, R. E. , Goldsmith, L. , Winter, S. , Spaulding, E. , Dunn, N. , Mander, S. , Ryan, A. , Smith, A. , & Marshall, H. M. (2022). Emotions and lung cancer screening: Prioritising a humanistic approach to care. Health & Social Care in the Community, 30, e5259–e5269. 10.1111/hsc.13945

DATA AVAILABILITY STATEMENT

The data that support the findings of this study are available to suitably qualified individuals, on request from the corresponding author, subject to ethical approval. The data are not publicly available due to privacy or ethical restrictions.