Telling Stories of Cancer: Disadvantaged Neighborhoods and Health Outcomes

League Against Cancer – 2015 Call for Proposals – Research in the Humanities and Social Sciences

Principal Investigator:Laurent Visier

The understanding of health in terms of both environmental factors and social conditions is a relatively recent development in France (Leclerc et al. 2010). However, the overall improvement in health indicators is linked not only to individual circumstances and behaviors but also to collective experiences.

Social inequalities in health (SIH) are well documented in international comparisons (Mackenbach, Karanikolos, and McKee 2013). In France, they are now central to the health policy priorities (HCSP 2010) and specifically to cancer policy (HCSP 2013). Reducing these inequalities is a key mission of the Regional Health Agencies (ARS) (Basset (DS.)
2008). Regarding cancer, inequalities affect not only causal pathways, screening (ORS Alsace 2013), prevalence, and mortality (Menvielle et al. 2008) but also patient pathways. Within the same urban area, considerable differences in health status emerge across neighborhoods, even though the distances separating them are sometimes small (Ross, Tremblay, and Graham 2004; Vigneron 2011). The issue of social and territorial health inequalities is particularly acute in sensitive urban zones (ZUS). Geographers refer to this as environmental justice (Jamie Pearce et al. 2007; Jamie R. Pearce et al. 2010). However, public health in these neighborhoods is less well documented in France and is less frequently the focus of remedial actions (Chauvin and Parizot 2007).

These inner-city neighborhoods, which are the focus of urban policy, exhibit high levels of social deprivation and a combination of disadvantages (ONZUS 2013). However, the poor health outcomes in these vulnerable neighborhoods cannot be attributed solely to the sum of the individuals who live there: collective factors must also be taken into account (Ham et al. 2014). Nevertheless, the effects of the local environment on health and its community dimension have been little studied in France.

Some studies explore the effects of individual membership in a social group on the downward trajectory of perceived health (Barnay and Riccardis 2014), as well as the collective effects of the local community on social norms (Lapeyronnie 2008). These effects, which influence the mechanisms of health inequities—a topic studied more extensively in the United States—are well known; embedded within territories, individuals establish symbolic boundaries that accentuate cultural mismatches between their tastes and dispositions—necessary for inclusion in their social and cultural group—and the integration of health norms (Small, Harding, and Lamont 2010). The effects of marginalization and economic status crystallize into behavioral patterns that, in turn, reinforce the difficulty of integrating health norms, particularly that of promoting individual autonomy in health, for example (Duncan and Brooks-Gunn 1999). As an initial effect of territorial concentration, this “culture of the poor” (Hoggart 1957) in turn produces adaptive effects in response to the situation of poverty. Health recommendations may appear to certain groups as foreign or domineering norms (Sayad 1997). Life in areas of poverty has a distinct effect that cannot be reduced to individual variables: diminished cognitive skills, exposure to typical psychological states (resignation, fatalism, etc.).

However, there is variation and heterogeneity in the health behaviors of residents in working-class neighborhoods (Lamont 2009). When it comes to cancer, there is significant social differentiation in perceptions of both its causes and its effects (stigmatization) (Beck, Peretti-Watel, and Gautier 2006). This therefore presents a political and health challenge.

Despite sociological research in France on life trajectories with cancer (Ménoret 1999) and, more recently, on the impact of the cancer experience on returning to work (Tarantini, Gallardo, and Peretti-Watel 2014) from the perspective of biographical rupture (Bury 1982), there is a notable lack of specific research on the health of foreigners (Berchet and Jusot 2012) or immigrants. And even less on cancer, whether from the perspective of prevention practices (Grillo, Soler, and Chauvin 2012) or disease trajectories (Pian 2012).

While patient-centered care is currently being promoted, very little is known about the actual care pathways of the most disadvantaged patients. This could lead to the mistaken assumption that where medical care takes precedence, social factors should take a back seat (Birouste 2014). The culture of poverty may constitute a set of values, attitudes, and practices, but the patient narratives collected by researchers allow us to individualize this social and cultural determination of behavior and reveal the possibilities for individuals to take action on their own behalf.

Research on health in neighborhoods (Chaix et al. 2010; Turrell et al. 2013) or, more broadly, on social networks—in the sense of networks of friends, acquaintances, and neighbors (Christakis and Fowler 2013)—demonstrate how individuals’ health can be understood through the reference groups to which they belong and how social norms help shape everyone’s health (Visier 2011). The recent emphasis in France on the concept of empowerment and the imperatives of health democracy call for viewing patients, and the groups surrounding them, as actors capable of playing an important role in the management of their illness.

In contrast to a top-down approach—for which Parsons’s functionalist sociology provides the theoretical model (Parsons 1951)—a bottom-up approach is gaining ground. From a renewed ethical perspective, this approach—which has now reached international forums—would give a voice to the most disadvantaged communities (Ruano, Friedman, and Hill 2014) in the formulation of health needs. In the French context, this perspective leads to the conclusion that the professed universalism of healthcare coverage is not sufficient to eliminate social health inequalities and that “nothing will be done without us” (Bacqué and Mechmache 2013).

Finally, a genuine commitment to patient-centered care must be reflected in the training of healthcare professionals (Compagnon 2014). This involves, in particular, developing training materials for physicians and caregivers, which must be approached not only as an educational concern but also as an ethical one (CCNE 2004).

In line with the shift that took place in the late 1990s following the National Conference on Cancer Patients, patient testimonials can be viewed in various forms as resources not only for patients but also for healthcare professionals (Balez 2015; Kapikian 2015).