Telling the cancer story: precarious neighborhoods and health trajectories

Ligue contre le cancer - Call for projects 2015 - Research in the humanities and social sciences

The understanding of health in terms of the effects of territory on the one hand, and social conditions on the other, is relatively recent in France (Leclerc et al. 2010). However, the general improvement in health indicators is related not only to individual conditions and behaviors, but also to collective experiences.

Social inequalities in health (SII) are documented in international comparisons (Mackenbach, Karanikolos and McKee 2013). In France, they are now at the heart of health policy priorities (HCSP 2010), with a specific focus on cancer (HCSP 2013). Reducing them is one of the missions of the ARS (Basset (DS.)
2008). Where cancer is concerned, inequalities affect not only causal chains, screening (ORS Alsace 2013), prevalence and mortality (Menvielle et al. 2008), but also pathways. Within the same urban area, there are considerable differences in health levels between neighborhoods, even though the distances between them are sometimes small (Ross, Tremblay and Graham 2004; Vigneron 2011). The issue of social and territorial inequalities in health 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 is less well documented in these areas in France, and is less frequently the focus of remedial action (Chauvin and Parizot 2007).

These suburban neighborhoods, which are the subject of urban policy, have high indices of social disadvantage (deprivation) and show an accumulation of handicaps (ONZUS 2013). However, the low level of health in sensitive neighborhoods cannot be related solely to the sum of the individuals who populate them: collective dimensions must be taken into account (Ham et al. 2014). Yet the effects of the territory on health and its community dimension are poorly studied in France.

Some studies explore the effects of individual social group membership on the downward trajectory of perceived health (Barnay and Riccardis 2014), but also the collective effects of territory on norms (Lapeyronnie 2008). These effects, playing on the mechanisms of health injustices, more explored in the United States, are well known; inserted in territories, individuals establish symbolic boundaries that accentuate cultural mismatches between their tastes, their dispositions, necessary for inclusion in their social and cultural group, and the integration of health norms (Small, Harding and Lamont 2010). The effects of relegation and economic status crystallize in behavioral patterns that, in turn, reinforce the difficulty of integrating the 4 norms, notably that of promoting individual autonomy in health, for example (Duncan and Brooks-Gunn 1999). 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. In the eyes of certain groups, health recommendations may appear as foreign or domineering standards (Sayad 1997). Living in poverty has its own effects, which cannot be reduced to individual variables: diminished cognitive skills, exposure to typical psychological states (resignation, fatalism, etc.).

Yet there are variations and heterogeneity in the health behaviors of people living in working-class neighborhoods (Lamont 2009). In the case of cancer, social differentiation in perceptions of both its causes and its effects (stigmatization) is significant (Beck, Peretti-Watel and Gautier 2006). There is therefore a political and health issue at stake.

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

Although the concept of "pathway medicine" is currently being promoted, very little is known about the actual pathways taken by the most disadvantaged patients. This could lead us to believe, wrongly, that where medical care prevails, social care 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 the researchers make it possible to individualize this social and cultural determination of behavior, and reveal the possibilities for individuals to act on themselves.

Health research on neighbourhoods (Chaix et al. 2010; Turrell et al. 2013) or, more broadly, on social networks - in the sense of networks of friends, relations and neighbors (Christakis and Fowler 2013) - shows how the health of individuals can be understood on the basis of the reference groups to which they belong, and how social norms contribute to shaping the health of each individual (Visier 2011). The recent mobilization in France of the notion of empowerment and the imperatives of health democracy commit us to considering patients, and the groups that surround them, as actors capable of playing an important role in the management of their illness.

In the face of a top-down logic, for which Parsons' functionalist sociology provides the theoretical model (Parsons 1951), a bottom-up logic is asserting itself, which, in a renewed ethical perspective, carried today even to international bodies, would give a voice to the least favored communities (Ruano, Friedman and Hill 2014) in the formulation of health needs. In the French situation, this perspective leads us to consider that the declared universalism of healthcare provision is not enough to erase social inequalities in health, and that "nothing will be done without us" (Bacqué and Mechmache 2013).

Finally, a real commitment to patient-centered care must be reflected in the training of healthcare professionals (Compagnon 2014). In particular, this means working on the production of documents for the training of doctors and caregivers, which must be thought of as not only a pedagogical but also an ethical concern (CCNE 2004).

In line with the shift made in the late 1990s with the États généraux des malades atteints de cancer, patient testimonials can be considered in various forms, as resources for disease carriers but also for professionals (Balez 2015; Kapikian 2015).