Family and Social Management of Health Issues
Directed by François Aubry
Presentation - Social and Family Management of Health Problems
François Aubry , Émilie Audy
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.
"You always have to be there." An analysis of parental work in the context of autism
Catherine des Rivières-Pigeon, Isabelle Courcy
Research Framework : Having a child with an autism spectrum disorder (ASD) is a complex situation that substantially transforms the reality of these families. The workload required to take care of the children is a central aspect of the lives of these families that needs to be better documented. So far, the characteristics of this « caring work » have rarely been examined from the perspective of implicated family members.
Objectives : This article presents an in-depth analysis of the domestic and care work that parents of children with ASD living in Quebec do to take care of their children’s special needs.
Methodology: An original methodology, combining semi-directed interviews and a participatory method of data collection, was developed to analyze the domestic and care work that parents of ASD children do on a day-to-day basis. The research was carried out with 15 families (13 mothers and 9 fathers) with various profiles.
Results : The results show the burden of the work carried out by the parents and the expertise that they need to acquire to achieve it. They also reveal the specialized and specific nature of this work, and the central role of « upstream work », a form of work that prepares the direct tasks to be carried out with the child.
Conclusions: This in-depth analysis of the tasks performed by parents shows that a substantial proportion of this work, although complex, affects even the most basic aspects of parental responsibilities such as ensuring that the child is clean, nourished and safe.
Contribution: The contribution of this article is to expose the experiences of parents of children with ASD beyond the usual representations that often present them as vulnerable and helpless, by revealing the complex work that they do to meet the special needs of their children.
“Of course, there will always be days ‘with’ and days ‘without’ ”. Autism and the family management of food particularities from childhood to adolescence
Research Framework: Dietary characteristics are a pervasive feature of how children with Autism Spectrum Disorder (ASD) function. This aspect requires family members to support, adjust and reorganize daily activities in the provision of food and in ensuring proper health.
Objectives: This article focuses on families with dietary peculiarities and how problematic TSA-associated behavior at the table can have consequences on the social life of these children, their families and their loved ones.
Methodology : To study parenting practices, a survey of parents of children with ASD was conducted through interviews (n = 21), testimonies (n = 29) and questionnaires (n = 322).
Results : Based on a broad array of research areas, this article is interested in describing and explaining the daily burden of food management at the crossroads of parental, domestic care work and its « material » and « ideal » aspects. The analysis also shows that the management of food characteristics redefines parental roles, especially for mothers. It also questions management issues beyond the parental sphere through the support provided by extended family members.
Conclusions: This analysis studies how the dietary characteristics of children with autism are managed by family members through an interweaving of the sociology of food, health, disability, family and gender.
Contribution: This article highlights the intersection between the normal and pathological and the social adjustments required for the provision of « food care ».
Conflicting experiences of Alzheimer’s disease. When sick people and their relatives describe contrasting trajectories of care-giving
Veronika Kushtanina, Aline Chamahian, Frédéric Balard, Vincent Caradec
Research framework: The literature dedicated to the families of Alzheimer’s patients underlines the burden that taking care of a sick person can represent and the diversity of their experiences. Despite abundant literature on the subject, two blank spaces remain: 1) studies tend to be based on the relatives’ narrations and 2) they tend to grasp the care-giving experience from a solely synchronic standpoint.
Objectives: This article’s ambition is to explore these two under-evaluated perspectives and spur dialogue about the narration of sick people and their relatives from a dyachronic perspective. This article seeks to analyze the relational dynamics developed over time between Alzheimer’s patients and their relatives.
Methodology: Two waves of interviews with 21 Alzheimer’s patients and their relatives conducted over a period of 18 to 24 months.
Results: We present a typology of experiences that confronts the subjective experiences of the sick people and their relatives which considers the trajectories of care-giving.
Conclusions: We reveal three dynamic trajectories (abandonment, the severing of ties and improved relationships) and three types of stable trajectory (including two positively experienced trajectories – proximal and distant – and a relatively tense trajectory that can be quite painful). We analyze how these trajectories are constructed (relationships between the sick person and the relative, cohabitation or separate living spaces and relational history).
Contribution: This article shows that care-giving relationships are a set of interactions in which sick people are equal partners and not solely care-receivers.
Healthcare in Rural Areas : Domestication of the Care System and Individual Trajectories Embedded in Kinship Relations (Lorraine, France)
Virginie Vinel, Déborah Kessler-Bilthauer
Research Framework : Throughout all stages of life and across all phases of managing health problems, the family is at the heart of structuring and organizing care pathways.
Objectives : Based on a qualitative research carried out in Lorraine (France), this article intends to examine the influence and actions of family members in the construction of therapeutic trajectories.
Methodology : A socio-anthropological survey of semi-directive interviews was carried out from 2013 to 2015 with 48 people in rural Lorraine. We investigated ‘isolated’ areas and locations with a shortfall of front-line care.
Results : In the population being studied, though individual standard for paths to care has been fully integrated, family ties remain omnipresent. The selection of health practitioners, for example, is made through a progression of regional processes by the family network. The women are implicated in the provision of care for the most fragile and male spouses act in unforeseen cases and during tragic events. Relatives and familial ties are mobilized to provide individuals in need with a system of vigilant monitoring.
Conclusions : Active across multiple therapeutic trajectories, the family environment is a fundamental factor in the management of health and illness. Gender, age, the type of parents, spatial proximity and economic status were all analyzed to reveal the mechanisms within family interventions. These interactions are the product of a complex exchange of gifts and counter-gifts.
Contribution : The senses of unity generated by issues of health are founded through relationships that include couples, family lineages and the weighty contributions of women. Men are also stakeholders in this network of caregiving, playing leadership roles and in the provision of support during worrisome and more unusual cases. Collateral relationships and elective relationships are also active in these situations along more vertical lines including the provision of a looser connection of supervision and through remote caregiving.
Families Under “Supervision”
Research Framework: This article assesses the results of a survey (IRESP-INSERM funding in 2010-2013) whose main question was access to reproductive health care for « at-risk » and / or migrant women in France.
Objectives: We show how mothers integrate institutional arrangements and then analyze the categorization methods for the resulting families produced by these professionals.
Methodology: For the sociological aspect of the survey, we conducted 57 semi-directive interviews with medical professionals, social workers and women in at-risk situations and made observations at the patients’ homes and with professionals in the health and social systems.
Results: We begin by showing that the women being followed by maternal and child protective services are identified according to “qualitative” indicators of good parenting. We then examine the « techniques of introduction » used to introduce the professionals into these families and show that the recipients of this help often discover that they do not exactly correspond to the model expected by the institution.
Conclusions: This work betters our understanding of the way in which at risk parents are supported through the development of a trusting relationship which camouflages the reality of social monitoring. The monitoring of these women also reveals gender and class relations. We also noted that standardized practices are more widely applied to the fields of family, work, housing and even affect the most private of all aspects, self-respect.
Contribution: By studying health professionals, we are looking into the similarity of practices that support parenting as described by authors and social workers.
Alzheimer’s Caregivers and the Use of Respite Services
Arnaud Campéon, Céline Rothé
Research Framework: Since 2000, Alzheimer’s disease has been recognized as a major public health issue by public authorities and has been the target of significant public investment. Three programs have been implemented over the past 15 years, the most recent of which emphasizes that respite is both a vital need and a priority for caregivers.
Objectives: Much of the research has focused on elderly people, how social services are used and how decisions are made about social programs and their implementation. To gain a better understanding of this specific type of care, this article proposes several hypotheses concerning the perception and use of respite services.
Methodology: Our methodology is based on a qualitative survey of about 40 family caregivers for people suffering from Alzheimer’s disease in three different regions of France. All the interviews were recorded and transcribed to provide a cross-sectional analysis.
Results: This research demonstrates that there are two rationales for using respite services. These are structured around two principal variables, namely the time-related aspect of decision-making and the social perceptions of Alzheimer’s disease.
Conclusion: This work allows for a better understanding of the work done by caregivers and how they manage to preserve daily life and the identity of their loved-ones.
Contribution: This work is a reflection on the issues surrounding respite services, their use and the way they are mobilized to support family caregivers of Alzheimer’s sufferers.
Baby Boomer daughters-in-law taking care of elderly dependent relatives at home in South Korea: A Study of Primary Caregivers
Research Framework: When care is often considered the concern of others, the caregiving role is most often considered a female duty. In South Korea, where the gender division of labor is clearly apparent, daughters-in-law tend to be the primary caregiver for elderly relatives who require long-term care.
Objectives: This research aims to show not only the experience of primary caregivers caring for elderly dependents (mothers-in-law) at home, but also how the care they provide is invisible within the family and even society.
Methodology: We conducted semi-directed interviews in South Korea with nine daughters-in-law from the baby-boom generation. Four took care of their mother-in-law at home, and five took care of their mother-in-law at their own homes until they died.
Results: This research founded on the state of their experiences and the imbalances of tasks required of them including: task overload, conflicts between caregiver and care receiver, difficulty facing the symptoms of illness, and lack of help and recognition. Regarding the quest for stability between imbalance and equilibrium, we look into the concerns of positive feelings and self-efficacy, religion, emotional restraint, distancing, and reorganization of daily life and individual resources. We also looked into the support of secondary caregivers and the relationship between caregivers and care receiver in relational resources.
Conclusions: This article concludes by showing that Long-Term Care Insurance tends to lead primary caregivers to enter the care work market as a certified family care provider, but the form of the system is rather abnormal and questionable.
Contribution: This study contributes to discretely disclosing the singular experience of Korean primary caregivers in the provision of care for their elderly dependent relatives at home.
“Raising a ‘different’ child in a country where we are different”. A survey of immigrant families in Norway
Elena Albertini Früh, Zineb Rachedi, Hilde Lidén
Research Framework: Living with a child with special needs due to chronic health conditions is a heartfelt reality for many families in Norway. It requires adaptation for all the members of the family. This situation can be especially complicated for immigrant families.
Objectives: The purpose of this article is to understand the ways in which immigrant families from different backgrounds cope with their child’s health problems.
Methodology: The data is based on a qualitative study of twenty-seven individual, semi-structured interviews and three focus group interviews with newly immigrated parents or parents with an immigrant background. The inductive analysis is based on content analysis.
Results: Living with a child with special needs requires a redefinition of the roles and contributions of each parent. We found that the coping strategies used to meet the child’s special needs are accompanied by conjugal and parental practices that oscillate between changes and resistance of traditional gender roles and reproductions and “inventions” of cultural practices. For these families, the issue of work is a central theme for both women and men. On one hand, the mothers prefer paid work (and adapting to the Norwegian way of life) while on the other hand, they also need to meet expectations of being “the caregiver/nursing family” within which the disabled child is at the center of their concerns.
Conclusions: Social relations (developed through work or by maintaining of network of friends and extended families) as well as public support from the welfare system, are important resources for coping with a family life that includes the provision of care for a child with a disability or chronic disease.
Contributions: The study was carried out in collaboration with Lisbeth Gravdal Kvarme and funded through The Research Council of Norway as a part of the “Ethnic differences in labour market participation, health and sickness absence among parents caring for disabled or chronically ill children” project (n°227022/H20).
Patterns of family and children healthcare access in Nouakchott (Mauritania)
Research Framework: Despite the wide array of medical facilities in Nouakchott, access to healthcare for children constitutes a major public health issue and a financial burden for parents with limited resources.
Objectives: The objective of this article is to analyze how children depend on their family to access healthcare, and how their therapeutic journey is impacted by the roles of the child’s entourage.
Methodology: The foundation of this contribution lies within the anthropology of childhood, solidarity and family links. It is based on research carried out between 2013 and 2015. It integrates observations on pediatric wards with roughly fifty interviews conducted with children and their relatives.
Results: The family’s response to disease depends upon socially constructed relationships, as well as on individual initiatives and the situational context. Parents are at the center of health-related decisions; mothers are usually held accountable for the health of the child, whereas fathers provide the financial means to access care. Although the extended family provides support, parents generally find themselves alone in dealing with catastrophic healthcare costs. The status of the children in their family and the variations of the family configurations determine their access to healthcare. The status accorded to the child and its variations in changing family configurations modifies their access to care.
Conclusions: While parents describe their strategies for accessing care, children highlight the inertia of their entourage in the face of their pains. They describe how their parents’ efforts alternate with times of waiting, during which they have to bear their pain.
Contribution: Family solidarity tends to be idealized, but it appears to have little effect on access to health care, leaving some children isolated medically. Investments in understanding family configurations would benefit the development of public policies and international aid programs for children’s health.
From Child Care to Family Assistance: The Effects of the Professionalization of Child Care Services in France
Mélanie Jacquot, Anne Thevenot, Jutta De Chassey
Research framework: Over the last twenty years, child care services in France have undergone a major upheaval. Traditionally provided by women, mostly mothers, childcare has become a paid profession with the benefits of a professional activity without having to leave the home.
Objectives: Conducted as an extension of research already conducted with caregivers, this work studies the effects that the professionalization of caregiving. A unique aspect of this work is the introduction of men into the profession since 2005 and the changes that have occurred since the introduction of the law in 2005 which defined the status of caregiver and family assistance.
Methodology: This clinical psychology research project was led by a research team of two teacher/researchers from the Université de Strasbourg in France and two psychologists from Aide sociale à l’enfance or ASE (Child and Social Services). We based our work on a discourse analysis of 14 male care givers conducted as a part of recorded semi-directed interviews. We proceeded with a thematic analysis or each interview and compared the results with those of a previous study conducted with women.
Results: Interview analysis revealed that these men base themselves on the naturalization of their authority to prove their professional value. This is similar to how the women in the previous research work based themselves on the naturalization of their maternal qualities to guarantee their skills.
Conclusion: These professionalization process tends to denaturalize family care by dematernalizing it. It is through the use of gendered stereotypes that men find their place and function and are allowed to exercise this activity in a manner that they find satisfying.
Contribution: This work reveals the effects of the evolution of training and professionalism of full time childcare, a previously gendered activity, on its practise and on the way the people who engage in it perceive themselves.
Parent-child contact following foster placement : associations with placement stability
Karine Poitras, George M. Tarabulsy
Research Framework : Preschool children are less likely to be reunified to their biological parents after being in foster care and generally have more stable foster placement. However, little is known about the factors associated with stable placement in preschool children and, in particular, the role of parent-child contact on placement trajectories of these children.
Objectives : This study examines the relation between parent-child contacts after foster placement and three aspects related to foster placement stability : the prospect of parent-child reunification, the occurrence of family reunification failure, and the number of placement changes experienced by the child.
Methodology : Fifty-four biological parents and 43 foster parents responsible for young children aged between 12 and 43 months were met. Socio-demographic and contact arrangements information were collected during individual interviews and biological parents’ commitment to their child placed in a foster home was measured.
Results : Results show that parent-child contact is positively and significantly or marginally associated with prognosis for family reunification, even after controlling for potentially confounding ecological characteristics. Beyond contact arrangements, biological parental commitment to their child is associated with the prospect of family reunification.
Conclusions : Thus, results of this study confirm the role of parental commitment following foster care and support the development of interventions that promote this component of parenthood.
Contribution : This study sheds light on the distinct roles of parental commitment and parent-child contact on the prospect of family reunification and supports future research in this area.