Introduction

Lung cancer is one of the most commonly diagnosed cancers in Canada, and is responsible for a quarter of all cancer-related deaths [1]. Screening using low-dose computed tomography (LDCT) has the potential to diagnose lung cancer at an earlier stage thereby increasing the likelihood of curative therapy [2]. Effective screening interventions must reach populations at high-risk. Thus, engagement with individuals between the ages of 55–74 years, who have smoked cigarettes daily for a minimum of 20 years is critical for success [3].

Historically, individuals with lower levels of income and/or education, or recent immigrants are least likely to undertake preventative health practices such as cancer screening [4]. For lung cancer screening this is particularly problematic since the greatest lung cancer incidence is found in populations disadvantaged by a variety of social determinants such as income and education [5]. Lung cancer screening therefore presents two very specific challenges: (i) a disease distribution that is proportionate to the degree of social disadvantage; and (ii) an opportunity to screen for the disease in the target population, but with a potentially low uptake.

Quantitative and mixed methods studies document that individuals at high-risk of developing lung cancer who decline lung cancer screening are more likely to be active smokers, report personal blame or stigma, perceive lower benefit from undertaking the test, or have fatalistic beliefs about their own well-being [6–8]. Current recommendations to target this group therefore are aimed at enhancing invitation strategies [8], developing interventions to support decision-making and decreasing knowledge conflicts about screening between physicians and patients [7]. In this context, a major knowledge gap is an understanding of the lived experiences of individuals who are socially disadvantaged and the factors that influence their choice to access preventative health services, such as LDCT lung cancer screening. Thus, to address this knowledge gap, we conducted a qualitative study in Ontario where the implementation of lung cancer screening is currently being piloted.

Methods

Theoretical framework

The morphogenetic approach is a critical realist theory which posits that three primary causal powers determine individual behaviour; namely, structural relationships in society, sociocultural interactions between individuals, and individual agency [12, 13]. The term “morpho” takes its roots from the word shape, and “genesis” from the word shaping [12]. To be morphogenetic therefore implies taking action for change and the processes that elaborate or change system and/or structure. On the contrary, to be morphostatic implies to resist change and to maintain the status quo [12].

The morphogenetic approach has been described as the preferential framework with which to understand agency in higher education [14, 15] and individual transformation in criminology [16]. In this study we introduce the morphogenetic approach to health services research and describe how it can be used to critically contextualize the enablers of health seeking behaviour in health promotion practice.

The core assumptions of the morphogenetic approach (Fig 1) are: (i) that structural relationships pre-exist in society (T1); (ii) that these social structures influence social interaction (T2); (iii) that causal relationships exist between individuals and groups that influence social interaction (T3); and (iv) that social interaction can influence individual agency and social structure (T4) [12]. Subsequently, we applied these core assumptions to theorize the ‘choice’ to access lung cancer screening for individuals living with low income in the following way (Fig 1) [17]:

1. T1: Social, political, cultural and economic contexts influence current lung cancer risk;
2. T2: Socially-disadvantaged patients interact with the health system through various contexts;
3. T3: These interactions condition patients to respond in a certain way;
4. T4: The choice to seek preventative health care is based on these interactions and can lead to:
   1. T4a: Morphostasis or structural reproduction, by negative perspectives towards health and health seeking choices, that subsequently maintains the status quo and perpetuates lung cancer risk; or
   2. T4b: Morphogenesis or structural elaboration, by positive perspectives towards health and health seeking choices that subsequently transforms behaviour and potentially lowers lung cancer risk.

Download:

• PPT
  PowerPoint slide
• PNG
  larger image
• TIFF
  original image

Fig 1. Theorizing choice in health promotion though the morphogenetic approach.

https://doi.org/10.1371/journal.pone.0251264.g001

Results

Characteristics of study sample

We interviewed 18 screen-eligible individuals (eight screeners, ten non-screeners), who were primarily male, white and Canadian-born (Table 1). At the time of interview, seven participants were living in a homeless shelter in downtown Toronto. Eight participants lived in subsidized apartments through Toronto Community Housing, and the remaining three were renting their accommodations. Most participants reported annual incomes below $30,000 a year, while two reported income levels between $30,000 and $59,000. Participants who declined to undergo lung cancer screening were more likely to be living in the homeless shelter (seven participants) and report incomes below $30,000 (nine participants).

Download:

• PPT
  PowerPoint slide
• PNG
  larger image
• TIFF
  original image

Table 1. Participant sociodemographic information.

https://doi.org/10.1371/journal.pone.0251264.t001

Themes

Fig 2, shows a thematic map connecting our three main themes: Pathways of disadvantage, upstream determinants of lung cancer risk and early detection, and safe spaces of care.

Download:

• PPT
  PowerPoint slide
• PNG
  larger image
• TIFF
  original image

Fig 2. Thematic map.

Understanding the perspectives on choice for access to lung cancer screening for individuals living with low income.

https://doi.org/10.1371/journal.pone.0251264.g002

An overview of the themes is discussed below. The complete set of themes, subthemes and illustrative quotes that were derived from the transcripts is shown in Table 2.

Download:

• PPT
  PowerPoint slide
• PNG
  larger image
• TIFF
  original image

Table 2. Themes, subthemes, and illustrative quotes from interview transcripts.

https://doi.org/10.1371/journal.pone.0251264.t002

Pathways of disadvantage.

Clustering of disadvantage is a phenomenon whereby people who are disadvantaged in one area, such as income, are also disadvantaged in other areas, such as housing, food security, and educational opportunities [26]. Graham et al [27] have described the clustering of disadvantage from a life course perspective in relation to smoking behaviour to illuminate how poor circumstances in childhood influence future educational achievement and economic prospects contributing to a pathway of disadvantage that is deeply entwined with adult smoking behaviour. Given that it was neither the purpose nor scope of this study to identify the links between childhood circumstance and adult lung cancer risk and health seeking choices we bracketed our analysis of the life course to begin with working conditions and to end with current risk for lung cancer. The theme pathways of disadvantage, therefore, describes a social trajectory of events over the life course that influence lung cancer risk and health seeking behaviour.

In our study, all participants described precarious working conditions leading to economic instability and fluidity of material resources such as income. Participants also recounted physical or mental disabilities related to their working conditions or life circumstance. Specifically, half of the participants reported severely restricted current mobility due to spinal/joint injuries and arthritis that were associated with prior employment in manual labour. All participants had experience of being de-housed. Participants recounted the reasons for experiencing housing insecurity as income precarity and associated comorbidities. For participants who chose to undergo lung cancer screening, housing was described as a key determinant that influenced positive life outlook and perspectives towards preventative health care in general.

Upstream determinants of lung cancer risk and early detection.

Smoking is the single largest risk factor for lung cancer and an individual’s smoking history is a key enrolment criterion for the lung cancer screening pilot in Ontario. Accordingly, we define the theme upstream determinants of lung cancer risk and early detection as the social and economic factors which shape smoking behaviour and lung cancer screening choices.

All participants described the context in which they initiated smoking at an early age, recounting in detail the social acceptability of smoking, availability of cigarettes at an affordable price point, a lack of awareness of the associated harms, and mass media advertising which promoted its use. All participants recounted in detail how they had attempted smoking cessation. At the time of interviews however, only three participants had successfully been able to quit smoking and an additional four were actively enrolled in a smoking cessation program. Of the three participants able to quit smoking, one was living in subsidized housing and the other two were renting their homes (reporting incomes between $30–59,000 a year). These participants described how having access to material resources (such as income and housing) directly influenced their ability to choose and benefit from smoking cessation.

The three participants who had successfully quit smoking chose to be screened for lung cancer. Access to material resources had a direct influence on lung cancer screening perspectives. All eight participants who had undergone screening had their own place to stay (subsidized housing or rent). Five of eight reported having participated in other preventative health checks such as colon cancer screening. Participants who chose not to screen had competing priorities such as making ends meet, unemployment and housing security that were more pressing needs than screening for an illness which could possibly occur several years later.

Safe spaces of care.

A safe space of care is a place that is free of bias, judgment, conflict, criticism, or potentially threatening actions, ideas or conversations. For our study, we limited this theme to the lived experiences of participants’ encounters with front line health workers and the impact of these experiences on their subsequent health promoting choices. We build on the definitions of power (the ability of an agent to act), ‘power over’ (a social relation in which one person/group dominates to shape the available ‘choices’ of a subjugated person/group) [28] and influence (the power to have a direct effect on someone so as to change their actions in an important way) to contextualise the health seeking choices of participants ~ i.e. morphogenesis (accessing lung cancer screening) or morphostasis (declining lung cancer screening).

An important observation in our study was that all three participants who were renting their home chose to be screened for lung cancer, whilst all seven participants in the homeless shelter declined. Of eight participants who were living in subsidized housing at the time of the interviews, five chose to be screened for lung cancer, and three declined. All five who chose to be screened reported having a collaborative/supportive/non-judgemental relationship with their providers that promoted their personal health and wellbeing. These participants shared experiences of care that were sensitive to their life circumstances. Subsequently, participants recounted their clinical encounters as pleasant and comfortable. In contrast to these experiences, the three participants living in subsidized housing who declined lung cancer screening described encounters that were judgmental and insensitive to the sociohistorical realities that constituted their lives. Participants used words such as, “worthlessness”, “garbage”, “beggar” and “pest”, as they recounted these experiences.

Discussion

Despite a publicly funded health system in Canada, participation in population-wide screening programs has not been universal. Differences in screening uptake are associated with income, education and immigrant status [4]. Individuals who live with greater degrees of social disadvantage have a higher risk of some cancers and poorer overall survival; this is directly correlated with the social determinants of health and how they intersect across the cancer care continuum [29]. Therefore, new interventions such as lung cancer screening must take into consideration differences in utilization and needs, which are based on social location. This is key to preventing an inadvertent widening of the health equity gap that already exists between population groups. Our study sought to fill this knowledge gap in the context of lung cancer screening which is currently being pilot tested in the province of Ontario. Specifically, we wanted to understand the perspectives on choice for lung cancer screening in patients living with low income in order to inform the design and delivery of lung cancer screening as an organized program.

Through semi-structured interviews with individuals living with low income who chose to undergo or not undergo lung cancer screening, we found that participants’ interest in screening depended on the availability of adequate housing, which subsequently empowered participants to seek care to advance their health and wellbeing. Further, clinical encounters created a space that needed to be navigated without personal bias and with sociohistorical sensitivity. Participants who recounted their clinical encounters as places of judgment-free care had meaningful relationships with their physicians, and they subsequently trusted their physicians’ judgement and recommendations.

All participants in our study initiated smoking at a very early age, recounting cigarettes as being available, accessible and, “the thing to do”. Much of this context is related to the mass-marketing campaigns that ran across media stations and sensationalized smoking in the 1950’s and 1960’s [30]. Since then, policies enacted to limit the marketing and use of tobacco products in public spaces have led to decreases in smoking rates across Canada. However, this distribution is skewed such that individuals living with socioeconomic disadvantage are more likely to smoke and less likely to cease smoking [31].

Recent studies have highlighted that willingness to quit smoking is equal across social classes; however, socially-disadvantaged smokers are more likely to: (i) live in an environment where they socialize and work with other socially-disadvantaged people for whom smoking is considered acceptable [32]; (ii) use smoking as a way to relax and cope with high daily stress levels [33]; and (iii) report experiences of disadvantaged childhood, educational and employment trajectories that shape the pattern and frequency of cigarette consumption [27]. These findings are closely reflected in the lived experiences of our study participants all of whom had attempted smoking cessation at least once, yet only three had quit successfully.

In our study, the three participants who had successfully quit smoking reportedly quit because they became more proactive towards their own health once they had found housing and all three took part in lung cancer screening. Participants identified living conditions (housing) to be a key determinant of health and wellbeing, particularly in the context of a preventative health check such as lung cancer screening. Significantly, only those participants who had their own place to call home felt empowered enough to seek opportunities to advance their health and then take action to utilize the service of screening. Participants who chose not to undergo screening lived in diverse housing situations that were generally less secure (subsidized housing; homeless shelter). For these participants, lack of adequate housing was one barrier to care.

Another barrier was the attitude and influence of treating physicians, which determined participants’ willingness to continue to engage with the health system. In Canada, physicians are gatekeepers to and proponents of lung cancer screening and therefore have a critical role in ensuring equitable healthcare delivery. We have described physician perspectives on access to lung cancer screening for individuals living with low income elsewhere; a key finding was that an equity-oriented approach and attention to the upstream determinants of lung cancer by physicians will be needed in order to improve equitable access to lung cancer screening [34]. Our findings suggest that physicians and other healthcare practitioners must learn how to deliver care that is free of personal biases to prevent the perpetuation of oppression and the systemic reproduction of health inequities.

According to the “inverse equity hypothesis” [35] population-based health interventions are more rapidly adopted by the wealthy, a term described as “top inequality” [36]. This is in contrast to “bottom inequality” which refers to the lag in adoption experienced by the poorest when the intervention has reached high coverage across the remainder of the population (Victora et al., 2005). Thus, individuals developing health interventions must recognize patterns of health inequality and adapt policies and processes to mitigate these effects [37] and prevent a widening of the health equity gap between socially advantaged and disadvantaged population groups [38].

Midstream interventions [39, 40] geared at reducing cigarette consumption in the socially-disadvantaged are only likely to be truly successful if incorporated into a broader program that addresses the social context of smoking behaviour. As a standalone intervention, nicotine replacement therapy is unlikely to be highly effective in influencing smoking behaviour and reducing lung cancer risk for those who are socially-disadvantaged. Similarly, lung cancer screening as a midstream public health program may inadvertently increase health inequities unless proactive and multipronged strategies are in place to increase uptake. Screening programs may also neglect the underlying social context of smoking behaviour, such that even if individuals are screened for lung cancer, they may continue to face increased lung cancer risk due to the daily stressors that influence their choice to continue smoking. This approach to care is ignorant of the lived realities of those at high-risk of developing lung cancer, the target population of the lung cancer screening program. An equity-focused approach to screening programs therefore, would demand attention to the social context of cancer risk and utilization rates based on social location.

Health systems can determine how to respond best to inequitable health intervention uptake by engaging with patients to identify strategies that enhance intervention effectiveness [41]. Conducting future patient-oriented research that incorporates the lived experience of those at high-risk for lung cancer to guide the development of a multipronged approach (such as education, resources, and tools) can maximize the availability and accessibility of the intervention to the target population [42]. This approach, called targeting within universalism implies that a universally available intervention must be accompanied by specific uptake strategies that positively discriminate towards those at highest risk [43].

Conclusion

Inherently, any health promotion program that focuses only on individual uptake, such as choosing to undergo cancer screening, runs the risk of masking the fundamental causes of health conditions and may inadvertently widen health inequities that already exist. Program oversight by a governance structure that is focused on monitoring, tracking and advancing progress towards health equity will be needed. Ultimately, the health system must actively resist increasing the health equity divide by targeting both upstream social policies (that will ultimately reduce cancer risk), as well as midstream interventions that can enhance health seeking choices. To do this would require an emphasis on the social policies that facilitate stable work, adequate income, and secure housing. One of the ways in which this can be achieved is through the integration of patient-identified priorities. Future research into the lived experiences of patients can continue to provide meaningful insights into what works, and what is needed to enhance health promoting opportunities.

Supporting information

Acknowledgments

This article includes work from the published dissertation of AS. We would like to thank Dr. Dennis Raphael, Dr. Marina Morrow and Dr. Janet Parsons for their invaluable feedback during the conceptual development of this work.