Professor of Sociology, Faculty of Arts and of Human Sciences, Rabat, and member of the Association L’Avenir, Morocco
Given that cancer is a "total phenomenon", affecting the body of the child as well as his links to time, space, family, school and to society as a whole, it is important to develop further the idea that this disease is not only a somatic pathological state, but that it is also a state lived and manipulated socially and culturally.
Although the disease is an affliction that primarily affects the child and his most immediate family, it is not for this reason, an isolated phenomenon. Quite the opposite: it forms part of a socio-cultural context that determines the way in which it is perceived and experienced. It exposes, by the mere fact of its social and cultural ties, the essential articulations of the group; it makes the tensions and the lines of force or of weakness of the institutions of school and family more visible. Child cancer reflects, in its own way, the social relationships and the culture of the group, and in turn it is retranslated and reinterpreted by the group.
Individuals’ experience of disease is largely determined by their social and cultural relationships. In this sense, the link to disease not only distinguishes one civilisation from another, one society from another, but also one social category from another, and even one gender from another. The approach which focuses firstly on the research of the similarities and the similar and shared experiences, must, in our opinion, make way for research on the diversity and the difference between experiences.
To give some examples, we would say that a mother who is a manager or an entrepreneur would experience her child’s cancer differently from a mother who is a worker or employee; that a father living in a city would not have the same experience as a father living in a rural environment; that a mother who is also a widow and head of the household would not have the same experience as a married woman who shares with her husband her unsparing care for her sick child.
Families are not assumed to have the same cultural definition of the disease, nor the same perception of its causes and effects. They do not necessarily believe in one unique type of therapy. Their perceptions are not the same and do not experience the weight of the risk and the uncertainties inherent in the development of the disease to the same degree.
The children themselves do not have the same relationship to the disease, whatever their social grouping. Children from a relatively wealthy social background do not experience their illness in the same way as children from a modest or average social background. They neither have the same image of themselves, nor benefit from the same support from their families. They also do not have the same capacity to adapt to the changes brought about by the appearance of the disease and the demands of the treatment. Differences in age and the successive phases marking out the life cycle of sick children imply that the experience of each sub-category is different.
To go even further, different social and cultural groupings mean that sick children have different perceptions of their bodies. Whatever the corporal or infra-corporal signals, for ways of eating, dressing, caring for themselves or for the whole range of gestures, mimes, emotions and varieties of facial expression, children from different social and cultural backgrounds differ with regard to the customs and the representations of their sick bodies.
On the other hand, if it is generally admitted that the parental home generally assists in continuing with a course of treatment, as well as constituting psychological support for sick children and their families, it is also true that neither the experience of the users, nor the image that they develop of the disease are necessarily the same. The users are not required to have the same attitudes and expectations in this regard whatever their age, sex, social background, or the stage of treatment of their child. We believe it would also be important to learn about the experiences of families and sick children who remain at home with their parents, as well as determining their perception of the changes which might, in their opinion, improve the quality of the services and the psycho-social environment.
It would doubtless also be important to focus on the views of parents and children affected by cancer as regards the causes of the disease, its incidence within a certain circle of friends (contagious or not), and its probable outcome (curable or not), as well as the psychological and interpersonal effects of the disease on the parents and the sick children (feelings of anger, fear, abandonment, withdrawal into themselves, feelings of control over the disease, etc.).
Not less important in this regard are their relationships with the hospital, and more in particular, their motivations to return there and their perception of what is best and worst about the stay in hospital, as well as the possibility of recourse, whether beforehand or at the same time as conventional medicine, to "alternative" medicine.
It should however be borne in mind that, given the diversity of social and cultural backgrounds, it is not very likely that the information circulating among doctors, parents and sick children would be totally understood for each case, or perceived according to the same parameters. It is also important to define what the parents and sick children think of the quality of medical knowledge as regards the use of chemotherapy, hair fallout, the duration of the treatment, the curative role of the hospital, etc, and thus to verify whether or not their perception of these topics and experiences tallies with medically established and accepted opinion.
For all these considerations, we propose that the next International Days of the World Confederation of Parents of Children Affected by Cancer should be devoted to the study of the diverse socio-cultural contexts in which child cancer is found.
More precisely, we propose that the participants’ contributions should be articulated around the following themes:
1. Plurality of contexts and perception of the disease according to:
Civilisation
Social category
Urban or rural region
Gender
Age
2. Diversity of social relationships and experiences of the disease for each of the following levels:
Somatic level
Familial level
Psychological level
Level of education
3. Diversity of relationships to medical and parental institutions, according to the following levels:
Relationship to medical knowledge
Relationship to the hospital
Relationship to the parental home
4. Life cycle of the sick child and experience of the disease, for each of the following sub-categories:
Children up to 5 years old
Children from 6 to 9 years old
Pre-adolescents and adolescents
5. Importance of attention fully adapted to the diversity of socio-cultural contexts:
In relation to the hospital
In relation to the parental home
Contacts: Prof. Mokhtar El Harras
L’Avenir, Route de Oued Akrach, Hay Nahda II
Angle Rue Bani Jadr et Bani Azzaz. Rabat, Morocco, fax + 212 7 756011