This presentation of the issue on "Family Management of Health Problems" examines the roles of family members, particularly women, in caring or assisting a relative facing a health problem. It also introduces the eight thematic articles.
- family management,
Cette présentation au numéro «Gestion familiale des problèmes de santé» examine les rôles des membres de la famille, et plus spécifiquement des femmes, dans la prise en charge de l’un de ses membres confronté à un problème de santé. Elle introduit également les huit articles constituant ce dossier.
- gestion familiale,
- proches aidants
Corps de l’article
What ties exist between health and the family? Would it be reasonable to state that health is, at least in part, a family concern? When an individual experiences health problems, their loved ones often rally around them, acting as an adviser and as their spokesperson with the medical community. They may also provide them with support, or worse, stigmatization. In other words, “the family network significantly determines the beliefs of its members, their attitudes and their health-related behaviours in the management of illness” (Duhamel, 2006, p.3). How should we define this link between health and the family, and how do the health-related actions of family members unfold? How can we explain the differences that occur between types of illnesses, health care systems and familial and cultural configurations? This issue of Enfances, Familles, Générations compiles articles dedicated to the pursuit these questions.
The family as an agent of intervention in health issues is a relatively new subject for the social sciences (Cresson, 2006). It wasn’t until the 1990s that work began in earnest on this topic (Cresson, 1997; Mougel, 2009; Cresson and Mebtoul, 2010; Rapp and Ginsburg, 2011). Prior to this point, if the family was considered at all, it was from a pathological standpoint as a pathogenic element. This was especially true in the field of psychiatry. In the latter half of the 20th century, social research transitioned from a pathological model of the family to a therapeutic model where the family eventually became perceived as source of support (Carpentier, 2001). Not only is the family increasingly perceived as a potential solution to health problems, it can also be counted upon to serve as a learning environment. This is particularly true in terms of behaviour and predispositions in health and illness and the adoption of habits such as healthy eating, physical activity and more. Families, which most often means women as they tend to be the targets of health-related campaigns and actions, are largely responsible for the sharing and perpetuation of knowledge about healthy behaviour and lifestyles.  Informal care is most often based on “female knowledge” which makes use of the qualities traditionally expected of women (tenderness, empathy, etc.) and which is reminiscent of their former expected domestic chores such as preparing meals, dressing others, etc. This type of care, the kind expected of family members, receives varying levels of appreciation depending on social context. When states wish to reduce the cost of public assistance, they tend to pass on this responsibility to family caregivers (Saillant, 2003). In the case of informal care for the elderly, the family is implicitly considered to be the primary source of care and are responsible for 85% of the needs of the elderly (Kempeneers et al. , 2015). The family is therefore perceived as an excellent means of informal support and its depth of knowledge is considered both rich and effective (Wolff and Attias-Donfut, 2007; Carpentier, 2001; Saillant, 2003). On the other hand, “when medical and health-related resources are more plentiful and accessible, women and their knowledge are considered doubtful and dubious” (Saillant, 2003, p.268). There remains plenty to be said regarding the way in which family members are positioned and act in regard to health in accordance with social contexts.
The role of the patient and their family, acting as partner for care resources, also deserves to be demystified—particularly regarding the impact of status on the family and on the health care system. The family often finds themselves “reduced to a single point of view around which they are forced to rally” (Béliard et Eideliman, 2014). This prevents consideration for the variety of actions taken by family stakeholders such as fathers, mothers, grandparents, etc. Each of these individuals has a particular perspective on care and illness which cannot be summarized by a “family” point of view.
Though it has been shown that the family affects the way that health and illness are experienced for individuals, we should not forget that health also has an impact on the family. Duhamel (2006) explicitly states that health problems can act as an agent of stress for the family. The nature of this stress can be experienced cognitively (unpredictability, uncertainty, etc.), it can affect daily activities (ceasing activities, unforeseen financial expenses, etc.) and it can also impact interpersonal relationships (power relations, isolation of the person with the illness, etc.). Several studies conducted with caregivers have shown the exhaustion that they experience and the physical and mental impact that this type of burden can have on individuals including depression, feelings of gloom and the undermining of their own health (Kempeneers et al. , 2015; Vallée et al. , 2016).
It seems clear from studying the (francophone) sociological literature on the family, as well as familial anthropology, sociology of health and disability studies, that here is little dialogue occurring between these groups—even though they are all studying issues that draw from the same well. The influence of care-focused research on the social sciences (Kittay et Feder, 2002; Paperman and Laugier, 2006) originated from the feminist movement and it deserves to be further developed. By including forms of caregiving that make use of social connections into the global definition of care , since this informal work is most often performed by ‘invisible women’ (Abel and Nelson, 1990; Tronto, 1987; Saillant 2003), new light can be shed on areas which have yet to be studied in an empirical manner.
This special edition of Enfances, Familles, Générations is part of the movement toward more complex analyses that study the connections between health and the family through a more modern application of social sciences. These ties are now seen as important connections that are not solely pathogenic nor solely therapeutic, nor can they be lumped into a single perspective. This movement was begun thanks to several works which sought to consider the temporal dynamics of family commitments and disengagements as well as the factors at play in different levels of involvement among members of the same family and the evolution of individuals’ opinions regarding the illness of a loved one in comparison with human trajectories and social characteristics (Weber, Gojard and Gramain, 2003; Carpentier and Ducharme, 2005). How are these types of dynamics formed in the case of differing health and mental problems as well as in differing social and national configurations? The scope of this edition is purposefully extensive as there are numerous ways of interpreting “management” and “problems” as well as “health” and even "family”. Accordingly, we included a broad spectrum of works to best address this complex issue.
This perspective begs several specific questions. When a health problem emerges, how do family members observe these problems, and do they seek knowledge or the provision of assistance from outside the family? What opinions and exchanges of information do we see within the family and how can we understand them? How is the family environment an influence, and was informal or professional care given to the person in question? Which family members mobilize and when do they do so? What role is played by certain loved ones (and which ones and why?) in the decision to seek or avoid various forms of care from outside of the family? What is their involvement when acting in an advisory, interface or facilitation capacity with non-family members and those who are able to contribute to managing the illness? This might include physicians as well as medical and paramedical professionals, community support groups and associations and, more generally, other stakeholders local to where the person in question lives. Additionally, what role does the family play in intersectional health in relation to health services, community help organizations, lodging resources, etc.?
The articles here can be grouped into four distinct categories. The first describes parental activities undertaken when a child is ill or at risk. Des Rivières-Pigeon and Courcy ’s article is a reflection on the complexity of parental work when a child presents with autism spectrum disorder. The authors attempt to deconstruct the logic of “care” to see what their actions reveal. Rochedy looks at parental management in the feeding of children with eating problems and autism spectrum disorder (ASD). The author describes the daily activities of parental figures and the management of eating habits in particular.
The second category of articles focuses on the terms by which family and informal support systems combine to form a network of care where the sick person and their environment play a pivotal role. Kushtanina, Chamahian, Balard and Caradec present the diverse experiences of sick people and their loved ones as trajectories of support. They highlight the relational dynamics between these two groups while highlighting that the persons suffering from the illness are not the sole recipients of care but are rather a stakeholder in this particular dynamic. Vinel presents health environments in rural settings as a universe built through numerous friend and family relationships (principally female) which serve as a complement to the formal network of care and which come in contrast to the idea of an individualized relationship with health.
Our third category of articles focuses on criticism and the impact of institutional measures on recipient family members and their strategies for using these programs. Jacques ’ article looks at the manner in which migrant and at-risk mothers use institutional measures to access sexual and reproductive healthcare. It focuses on the manner in which these measures identify and evaluate the parenting skills of the women in the study and how it can work with them. Campéon and Rothé discuss the importance of support for caregivers helping people with Alzheimer’s disease. They also highlight the processes by which they come to use respite measures as well as the terms of this appropriation and use of these mechanisms.
In the fourth category, the articles look at cultural differences in the way families manage health. Oh discusses South Korea and how care is perceived as a social construction of femininity. For cultural and religious reasons, there remains a gendered division of labour where daughters-in-law play a central, yet invisible, role in the support of ageing family members. The author looks at some of the different types of difficulties experienced by these caregivers. Albertini Fruch, Rachedi and Lidén present the issues surrounding support for immigrant parents of children with health problems in Norway. They highlight the importance of formal and informal support as well as the struggle it takes for parents to work and acquire the revenue necessary to meet the needs of their children. Kane’s article looks at the lengths to which parents go to access the medical care for their children in Mauritania. Family unity, despite its praise, is not always effective in this environment, especially when it comes to the living standards of parents and the shape of the family.
December 5, 2017, as a part of the Journées annuelles de santé publique [Annual Public Health Days], a half-day seminar entitled “ Quand la promotion de la santé hyperresponsabilise les femmes” [when the promotion of health excessively responsibilizes women] showed how women in particular are the target of campaigns to promote vaccination against the human papillomavirus (HPV) (Rail, 2017) and the promotion of healthy eating practices (Provencher, 2017).
- Abel, E. K. et M. K. Nelson. 1990. Circles of Care: Work and Identity in Women’s Lives, Albany, SUNY Press.
- Béliard, A. et J.-S. Eideliman. 2014. « Mots pour maux : théories diagnostiques et problèmes de santé », Revue française de sociologie, vol. 55, no 3, p. 507-36.
- Carpentier, N. 2001. « Le long voyage des familles : la relation entre la psychiatrie et la famille au cours du XXe siècle », Sciences sociales et santé, vol. 19, no 1, p. 79-106.
- Carpentier, N. et F. Ducharme. 2005. « Support Network Transformations in the First Stages of the Caregiver’s Career », Qualitative Health Research, vol 15, no 3, p. 289-311.
- Cresson G. 1997. « La sociologie de la médecine méconnaît-elle la famille ? Gestion familiale des problèmes de », Sociétés contemporaines, no 25, p. 45-65.
- Cresson, G. 2006. « La production familiale de soins et de santé : la prise en compte tardive et inachevée d’une participation essentielle », Recherches familiales, no 1, p. 6-15.
- Cresson, G. et M. Mebtoul (dir.). 2010. Famille et santé, Rennes, Presses de l’École des hautes études en santé publique, «Recherche Santé Social».
- Duhamel, F. 2006. La santé et la famille: une approche systémique en soins infirmiers. Montréal: G. Morin.
- Kempeneers, M., A. Battaglini, I. Van Pevenage, A. Gagnon, E. Audy et J. Gerlach. 2015. « Chiffrer les solidarités familiales », Carnet synthèse InterActions, Centre de recherche et de partage des savoirs de Bordeaux-Cartierville-Saint-Laurent, vol. 4, 16 p.
- Kittay E. F., et E. K. Feder. 2002. The Subject of Care: Feminist Perspectives on Dependency , New York, Rowman and Littlefield.
- Mougel, S. 2009. Au chevet de l’enfant malade. Parents / professionnels, un modèle de partenariat ?, Paris, Armand Colin.
- Paperman, P.et S. Laugier (dir.). 2006. Le souci des autres. Éthique et politique du care, Paris, EHESS.
- Provencher, V. 2017. « Maman, qu’est-ce qu’on mange pour souper? » Promotion de saines pratiques alimentaires soucieuse de l’égalité entre les femmes et les hommes, Communication, Colloque Quand la promotion de la santé hyperresponsabilise les femmes, Journées annuelles de santé publique (JASP), 05 décembre 2017.
- Rail, G. 2017. L’hyperresponsabilisation des mères dans la promotion du vaccin contre le virus du papillome humain (VPH), Communication, Colloque Quand la promotion de la santé hyperresponsabilise les femmes, Journées annuelles de santé publique (JASP), 05 décembre 2017.
- Rapp, R. et F. Ginsburg. 2011. « Reverberations: Disability and the New Kinship Imaginary », Anthropological Quarterly, vol. 84, no 2, p. 379-410.
- Saillant, F. 2003. « Le mouvement des femmes, la transformation des systèmes de santé et l’enjeu des savoirs », dans Transformations sociales, genre et santé, sous la dir. de F. Saillant et M. Boulianne, Québec, Les Presses de l’Université Laval, p. 263-281.
- Tronto, J. C. 1987. « Beyond Gender Difference to a Theory of Care », Signs, vol. 12, no 4, p. 644-663.
- Vallée, A., Verdier-Parent, A., Vallée, J. N., & Hervé, C. 2016. Évaluation du ressenti des aidants, filles et fils de personnes âgées dépendantes atteintes de démence. Éthique & Santé, vol 13, no 2, 83-90.
- Weber, F., S. Gojard et A. Gramain. 2003. Charges de famille. Dépendance et parenté dans la France contemporaine, Paris, La Découverte.
- Wolff, F.-C., et C. Attias-Donfut. 2007. « Les comportements de transferts intergénérationnels en Europe », Économie et statistique, no 403-404, p. 117-141.