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Severe illness and death in the family context: the contributions of theoretical models and integrative approaches to the advancement of research.

Diane Laflamme et Joseph Josy Lévy
Traduction de Abigail Mira
Cet article est une traduction de :
La maladie grave et le deuil vécus en contexte familial : la contribution des modèles théoriques et des démarches intégratives à l’avancement des recherches  [fr]


Nombreux sont les travaux contemporains qui portent sur les aspects théoriques, méthodologiques et empiriques des problématiques entourant la maladie grave et le deuil vécus en contexte familial. Ce texte se propose de faire le point sur les perspectives théoriques, qui se recoupent à plusieurs reprises dans ces deux domaines, à partir d’une recension des travaux contemporains. On retrouve ainsi des modèles théoriques, essentiellement sociologiques et psychosociaux, qui peuvent être regroupés selon les catégories suivantes : approches qualitatives inductives qui conduisent à des modèles intégrateurs ; approches hypothético-déductives qui prennent en considération des facteurs spécifiques organisés en modèles et vérifiés à partir d’approches quantitatives et de procédures statistiques. À ces perspectives théoriques viennent s’ajouter les apports des approches systémiques, celles de la résilience, de l’ajustement au deuil et la construction du sens, de même que celles qui privilégient une démarche intégrative comme le modèle du double processus d’ajustement au deuil. Ce survol des fondements théoriques, des concepts et des principales hypothèses permet de démontrer la richesse de ces travaux et leur contribution à la compréhension des réseaux familiaux confrontés à des crises majeures qui demandent une réorganisation des configurations relationnelles et de trouver des ressources adaptatives pour traverser ces moments difficiles.

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1As a major event in the life of individuals and families, illness – be it chronic, severe or lethal – and death, can be the cause of major biographical disruptions (Bury, 1982) and have important repercussions in different areas of one’s life. Becoming a family caregiver or watching an illness take a loved one are difficult experiences to deal with, involving intense affects. The reorganization of family relations lead down individual and collective pathways that deeply alter the positioning and the roles of each member of the family as well as the possibility for the family to remain a place of life and wellbeing. Research on severe illness and death in the family context acknowledges this fact while setting it in the broader social and cultural context that constantly transforms and creates new forms of family. To study these topics, sociological and psychosocial models are preferred and, in the case of the issues experienced in the context of bereavement, the preference is given to integrative perspectives.

Consequences of severe or lethal illness on family relations.

2Empirical research and literature reviews resting on different populations and methodologies have explored the consequences of illness on members of a family, and especially on those who act as family caregivers. One can refer to the overviews concerning caregivers for patients suffering from cancer (Bee et al., 2008; Stenberg et al., 2010; Li et al., 2013; LeSeure and Chongkham-ang, 2015); from chronic pediatric illnesses and handicaps (Cousino and Hazen, 2013; Easter et al., 2015); from mental illnesses such as schizophrenia (Tungpunkom et. al., 2013; Caqueo-Urízar et. al., 2014), dementia (Caceres et al., 2016), depression (Priestley et McPherson, 2016) and bipolar disorder (Pompili et al., 2014). These studies bring to light the variety of affected groups (children, adolescents, adults and seniors), the extension of the support network within the family and outside of it (medical and hospital system), the type of family relations (children, spouses, brothers and sisters, grandparents), the level of involvement in the care and monitoring of patients. Sociodemographic, cognitive, affective, relational and idiosyncratic characteristics also play a great part in the strategies and coping mechanisms adopted by family caregivers. The consequences of their commitment on their everyday life and wellbeing, which vary depending on the type of illness and the affected person, are also explored. These arrangements have been described from the viewpoint of several different theories: we will review their main assumptions and concepts, illustrated by empirical examples.

Inductive qualitative approaches

3A first group of theories rests on inductive qualitative approaches using methodologies leading to integrative models that account for the situation of family caregivers.

4The first approach that interests us, Parsons’ (1951), attached to the functionalist school of thought, described the sick role that refers to the rights and responsibilities of the ill, according to three modalities: conditional, unconditional, and stigmatized. For this author, this role is socially associated to the acknowledgment of a sanctioned deviance placed under the control of the medical system. Being sick is not only an existential condition: the state obeys socially established norms that the affected people must conform to, under the condition that they recover quickly and return to a normal situation. This theory does not directly take into account the topic of family helpers, insisting rather on the physician’s role in the management of an illness. It also highlights the division of labor within the family, with an opposition between the instrumental tasks, that are masculine, and the expressive ones, that are feminine, explaining the unequal division of the tasks connected to caring for the ill and the predominance of women in this type of support (Parsons and Bales, 1955). This perspective is criticized by feminist researchers who see it as rather a consequence of the “intensive mothering” women must submit to, as evidences by empirical data (Carroll and Campbell, 2008).

5A second theoretical approach, symbolic interactionism, served to analyze the social constructions of sickness and diagnosis, as well as the aspects of family that are involved in caring for the sick. This theory, which is not limited to the biomedical field, rests on a constructivist perspective. It takes into consideration emotions, interpretations and meanings that are constantly transformed, unfolding during interactions between individuals, as well as the ways in which they are negotiated, taking into account the resources and position of the actors, their situations and their dynamics (Blumer, 1969; fields, 2006). For Snow (2001), Blumer’s assumptions can be recast according to four principles: interactive determination, symbolizing, emergence and agentivity, which allow for a better understanding of the processes of social life, including the understanding of sickness and health, the positioning of family caregivers and their actions. This approach served, for example, to the study of caregivers in the contexts of mental illness (Muhlbauer, 2008), end-of-life caregiving (Philips and Reed, 2010) and Alzheimer’s disease (Garwick et. al., 1994). This approach contributes to the fine-grained analysis of the interactions between the sick and their caregivers, and of their understandings of the tasks at hand and support strategies, without always taking into account the variations depending on the type of family caregiver, the evolution of their relations or the strategies that are preferred over time. Furthermore discursive data, unlike direct observation, does not allow one to capture the dynamic of exchanges.

6A third, more methodological approach, rests on grounded theory as it has been developed by several authors (for example Glaser and Strauss, 1967; Strauss and Corbin, 1990; Glaser, 2001). This inductive methodology, predicated on the assumptions of symbolic interactionism, follows a constructivist and phenomenological perspective, favoring the analysis of qualitative data outside of preexisting hypothesis, to identify topics and local terms through the application of systematic procedures (collecting detailed theoretical and empirical data, building conceptual categories, and defining the integrative model). It allows one to determine implicit categories ands the relations existing between them, based on the discursive data that is associated to everyday lived experience. Contrary to other qualitative approaches, Grounded theory focuses on the issues that stem from the analysis, to explore their ramifications based on new data. In the last stage of analysis, a theoretical and integrative model that can account for the social phenomenon that was observed is put forward. This approach has sparked epistemological questionings regarding its scientific validity (Charmaz, 1990) and debates that, to this day, provide food for thought (Morse et. al., 2009). It has for example been used in studies concerning chronic illness (Charmaz, 1990), cancer (Basinger et. al., 2015) and mental and bipolar disorders (Van der Voort et. al., 2009; Rose et. al., 2002).

7For example, Rose et. al. (2002) studied the burden taken on by socio-demographically heterogeneous family caregivers whose family members were affected by mental disorders, some of them institutionalized, others not. Emerging topics related first and foremost to a concept of psychosocial normality subscribed to by the family caregivers. The levels of grief, anger and frustration that they experienced depended on their ability to accept the deviations of their sick family member from normality, especially in the context of an ambiguous diagnosis. In dealing with these conditions, caregivers used different strategies (limiting loss/managing grief; navigating the medical system/becoming savvy; questioning responsibilities in the management of the illness) while setting containment goals (setting limits, maintaining access to treatment, meaning and drive). The management of stigma, the minimizing of losses and the reframing of perspectives when facing sickness goes hand in hand with a redefinition of their role as caregivers to include new duties (communicator, teacher, advocate). This analysis, while contributing to understanding the relational dynamic, emotions and strategies of caregivers supporting family members who suffer from mental illness, does not allow for an evaluation of the variations in these pathways according to the type of family members. On the contrary, the study by Van der Voort et. al. (2009) gives an account of the specific experience of spouses and ex-spouses (men and women) whose partner suffered from bipolar disorder. The fundamental concepts that define the experience are those of “burden” and “alone together”, perceptions that are unrelated to the phases of the illness. The main burden is connected to the loneliness in dealing with key aspects of daily life and can be broken down into a feeling of solitude facing a triple issue (the burden of responsibility for housework, children, and care for the sick; the not sharing of feelings such as guilt and anger, the absence of intimacy and fear for the future; the consequences of the illness on the caregiver, such as having to leave one’s job, adopting new roles and exhaustion). Coping methods rest on several strategies that vary depending on the different stages of an illness, without following a linear perspective. In the first stage, evaluation prevails (evaluating the situation and the state of the relationship, sometimes leading up to a divorce, wondering how to have an impact on the spouses behavior). It is followed by a period if striving to establish a balance between self-effacement and self-fulfillment (trying to reestablish a satisfactory relationship, looking for help in one’s social network or establishing a comfort zone). This general model varies depending on personal characteristics regarding resilience, feelings for one’s spouse and the capacity to share. The absence of professional help is also a salient point in the structuring of external support and its pursuit can become a source of stress. This approach contributes to understanding the development of the consequences of illness on marital relationships and the coping methods of the spouses of sick people, without however distinguishing clearly between those of husbands and wives, which can show significant variation.

Hypothetico-deductive approaches

8In hypothetico-deductive approaches specific factors are taken into consideration, organized into models, and their relative influence verified though quantitative methodologies. These include standardized verified surveys, larger samples than used with qualitative methodologies, as well as complex statistical procedures, in particular Structural Equation Modeling, which can help to ascertain causal relations in the evaluation of the psychological state of the caregivers.

9In this area, a first set of theories is concerned with the perspectives on stress and coping that are useful to the analysis of the problems met by family caregivers, among others. The framework developed by Lazarus and Folkman (1987) rests on the assumption that stress is not an event in and of itself, but rather the result of transactions between a person and their environment. This entails that one must take into account cognitive and emotional factors as well as the coping strategies that are specific to the caregivers. Self-evaluation, which plays a central role in the structuring of their reactions, their feelings and their behavior, includes several dimensions. Primary appraisal refers to an evaluation of the burden inherent to caring for the patients, and of the caregivers’ resources. If there is too much of a gap between the two, the situation they are confronted with becomes potentially threatening, although it can also appear as a challenge to rise to and ultimately benefit from. In the event of a perceived threat, a process of secondary self-evaluation or appraisal leads to adjustment or coping mechanisms being identified, as well as possible behavior to counter the threat. These two first appraisal strategies can take place simultaneously. A constant reevaluation of the situation, which is a third type of evaluation, rests on the perceptions of the caregivers, and alters them. This framework takes into account the situational factors that weigh on this appraisal (values, involvement, goals; resource availability; newness of the situation; self-esteem and social support; coping abilities; degree of uncertainty and ambiguity regarding the illness; nearness, strength and duration of the threat and ability to control it), as well as emotions (anxiety, fear, anger, guilt and sadness) and coping behavior.

10The concept of coping is defined as “constantly changing cognitive and behavioral efforts to manage specific external and/or internal demands that are considered to be taxing or exceeding the resources of the person” (Lazarus and Folkman, 1984: 141). Two main coping strategies have been conceptualized; referring to those oriented towards problem solving or on emotions (distancing, avoidance, selective attention, blame, minimizing, expression of emotions, etc.). Following a study among the caregivers of HIV patients, Folkman (1997) adds other factors that can influence stress, such as psychological states (positive and negative, religious and spiritual beliefs). As for measuring the state of one’s heath, it rests on three main aspects: adequate functioning in daily life and at work; moral or existential satisfaction; physical health. This framework was widened to take into account the ethno-cultural origin of the caregivers (Haley et. al., 1996), which appears to impact stress appraisal. Thus, it seems that Afro-American caregivers suffer higher levels of depression and make more use of coping methods based on emotion (self-control, distancing, acceptance of responsibility and avoidance). The young age of the Afro-American respondents and a more problematic health state may be factors leading to the assessment of the workload and emotional distress being higher than among other ethno-cultural groups. The reference to ethnicity as a fundamental structural variable (a measure of social status and socio-economical level) also appears in the study on caregivers helping patients afflicted with dementia (Knight et. al., 2000).

11Mackay and Pakenham’s (2012) study on the factors that affect the adjustment of family caregivers for adult patients dealing with mental disorders also uses the stress and coping framework. The caregivers that best adjust appear to possess specific characteristics (among other, more social support, better relationship quality, a low threat level, more accurate appraisal of the challenges they are facing and less resorting to avoidance). These theoretically and methodologically complex studies help pinpoint the factors that determine family caregivers’ adjustment. However, as with other theoretical frameworks, variations according to parent category and gender, as well as the longitudinal evaluation of adjustments, are not taken into account.

12Another theoretical framework, that is used to study the support given to children and seniors that are affected by chronic illness, refers to the risk-resilience model developed by Wallander et. al. (1989), Wallander and Venters (1995) and Horton and Wallander (2001). In this framework, the factors associated with risk include the features of the illness or handicap, tensions pertaining to daily care and psychological stress experienced by the family caregivers. The factors associated to resilience are a combination of factors of stability and ones that are connected to the handling of stress and socio-ecological elements. Risk factors appear to vary according to socio-ecological and interpersonal (beliefs, attitudes and behavioral style) factors and to coping strategies. The interpersonal factors taken into consideration by Wallander and Venters (1995) and Horton and Wallander (2001) include role reduction and caregiver hardiness, and appear to explain a significant part of the observed variation. These authors propose that two new resilience factors be added to the framework, in the context of their study on mothers caring for children who suffer from chronic physical diseases. The first one refers to hope, which they define as a “cognitive set that is based on a reciprocally derived sense of successful agency (goal-directed determination) and pathways (planning of ways to meet goals” (2001, p. 384). The other important factor is social support for the caregivers, contributing to their wellbeing via their inclusion in networks that can be called on when troublesome events occur. Results indicate that stress levels among caregivers do not vary according to the child’s type of health problem, confirming rather that these two factors were adversely associated to stress levels. Perceptions of hope appear to have a moderating effect between stress factors and adjustment processes when stress is high, but this buffer role is absent when the connection between social support and stress is measured.

13Researchers have added additional factors to the basic risk-resilience framework. King et. al. proposed the addition of a frame of reference, the “outcome process framework”, that consists in assessing the contribution of the perception of medical and hospital care quality on the wellbeing of family caregivers (satisfaction regarding care and emotional wellbeing). Their research among parents of children with neurodevelopmental disorders indicates that when this perception is positive, the level of parental wellbeing is significantly higher, also depending on the importance of the behavioral problems associated to the child’s illness.

14Another approach that is used to understand the health problems experienced by family caregivers is the “caregiving stress process model”. According to Pearlin et. al. (1990), the stress experienced by family members can be understood as a process predicated on multiple dimensions (socio-economical characteristics and resources available to the caregivers), added to primary stressors, which are directly connected to healthcare delivery, secondary stressors (difficulties and tasks unconnected to healthcare), and psychological difficulties (relating to appraisal of self-efficiency). In this process, coping strategies and social support are mediators that play a part in modulating the stress connected to caring for the ill, affecting the wellbeing of the caregivers (physical mental and ability to uphold social tasks). This model was used in a study on spouses of cancer patients undergoing chemotherapy (Schumacher et. al., 1993). The study proved to be of great interest in evaluating the strain on family caregivers, explaining a great part of the variation observed in the results. The contribution of this framework was also verified in the case of a sample of family caregivers from several ethno-cultural groups (among others, Afro-Americans and Hispanics) involved in the care of patients with Alzheimer’s disease (Hilgeman, 2009). Results indicate that ethnic origin is an important variable to consider in the application of this framework, given the variations observed in this sample when this factor is taken into account.

15Based on a reassessment of the factors that were chosen in these last three approaches, Raina et. al. (2004) offer up a larger hybrid multi-dimensional frame, applicable to pediatric and geriatric populations, including both formal and informal care processes as well as the role of formal healthcare in the evaluation of family caregivers’ health. They suggest that we distinguish between states of handicap and the behaviors that are associated to them, detail the socio-ecological factors through a presentation of the constructs associated with family functioning and social support and, finally, take into account the impact on both physical and mental health. This amplified version is later developed on the analytical level so as to specify each construct and operationalize them. According to these authors, this framework calls for empirical verification through statistical analysis going beyond the mere identification of associations, to include structural equation models capable of laying bare the causal relationships between chosen factors. They argue in favor of using longitudinal studies in order to better grasp the dynamic of family support and the phases and transitions that are involved in the process, with the objective of suggesting frameworks for intervention that may contribute to raising the wellbeing of family helpers.

Research on the repercussions of death on family relations

16With studies concerning mourning processes after a death in the family, one finds research pathways that are related to the theoretical and methodological approaches we have just outlined. It is of special interest that recent evolutions in the field have contributed to the development of integrative approaches.

17Perspectives based on the viewpoint of psychology still dominate the discourse on bereavement, mostly because studies are still often meant to shed light on questions relating to helping the bereaved in the context of complicated or pathological mourning processes. However, an interdisciplinary approach has gradually gained in importance, with the input of sociologists (Veyrié, 2014; Clavandier, 2009; Castra, 2003), anthropologists (Berthod, 2009, 2014-2015), social workers (Brunhofer, 2014), and other practitioners, especially relating to existential and spiritual support (Nadeau, 2001, 2008). Thus, in studies published in the last ten years, scholars have described mourning as a crossroads phenomenon (Bacqué, 2013) and have emphasized its social aspects (Roudaut, 2012). Even when studies among the bereaved have stayed centered on psychological processes (Zech, 2006), they have insisted on the importance of taking into account relational processes (Zech et. al., 2013; Neimeyer et. al., 2014). This is a response to raising concern in previous decades, calling for a more holistic examination of the circumstances connected to death and mourning (Gilbert, 1996). It is in the context of this evolution that research on the experience of death and mourning gradually opened up to considering the ways in which this experience is connected to a web of family relations, a work environment, a society, a culture. Each of these networks play a part in helping the bereaved. Theoreticians and clinicians can no longer ignore them; they widen the scope of their studies to include them.

18Researchers who study the experience of bereaved family members use varied theoretical and methodological approaches, which correspond for the most part with those that have been presented relative to serious or lethal illness. A general presentation of the theoretical approaches such as systemic, socio-constructivism, resilience and coping having already been given in the section concerning illness, we will not repeat it here. We will rather focus on showing how these theories are used in research concerning death and mourning. We will show how the main tendency nowadays is to integrate elements taken from several of these theories, so as to take into consideration the multiple aspects of the experience of bereaved persons and families. Certain studies rely on grounded theory as a research methodology; others use content analysis, interviews with focus groups, ethnography and case studies. An overview of these different methods is given by Bourgeois (2006), following Neimeyer and Hogan (2001). Bourgeois also outlines the studies that examine how the use of rating scales referring to mourning behavior car help identify pathological responses to death. Theoretical advances thus contribute to orienting the types of responses that can be given to bereaved families, and especially to their most vulnerable members, leading to the publication of guidebooks and handbooks for professionals (Archer, 2008; Stroebe et. al., 2008, Becvar, 2013).

The lived experience of the members of a bereaved family, a specific space within studies on death and mourning.

19Whatever the theoretical perspective or the methodology used, studies on mourning recognize the importance of taking into account the specificities of bereavement, especially regarding the identity of the dead (spouse, newborn, child, brother or sister, grandparent), the circumstances of death (accidental or predictable, long-term illness, suicide etc.), and the context in which one may or may not have been able to prepare for the eventuality of their loss. Research problems relevant to death in the family have gradually opened a specific space within studies of death and bereavement in general, as of yet modest but clearly distinct (Delalibera et. al., 2015); many articles and chapters in collective works are being published on the subject (for example Dyregrov and Dyregrove, 2008; Jeffreys, 2014; Corden and Hirst, 2013; Rachédi et. al., 2010).

20The approach that has been most favored by researchers has led them to consider the bereaved as members of a family, rather than considering the family itself. Efforts were concentrated first on the psychological aspects of greiving. Works inspired by Bowlby (1978) on attachment styles (secure attachment, insecure-avoidant attachment and ambivalent-resistant) have popularized the formulation of psychodynamic models that present grieving as several more or less linear stages leading to a resolution (initial choc, protesting, disorganization, reorganization). This typology has proven useful in facilitating the identification of complications in the grieving process. These models, which shed light on the vagaries of the individual pathway of the bereaved, are less well adapted to studies concerning the family as a group. It must also be noted that they are no longer unanimously accepted; a number of scholars consider that they have not been adequately validated (Maciejewski et. al., 2007; Neimeyer, 2001).

21Without having completely disappeared from research on grief in the family context (for example, Braun and Berg, 1994), references to styles of attachment, to stages in the grieving process or to the tasks (Worden, 1983) that the bereaved must accomplish to resolve their grief (accepting loss, making it through their sadness, adjusting to a life without the dead, reinvesting new relationships) are now considered in the context of wider perspectives. The elements that enrich research on death in the family are borrowed from theories of resilience, adjusting to bereavement (coping) and the building of meaning in the context of loss (meaning-orientation).

22Before exploring these contributions, we will give an overview of the influence of systemic theories, for it is in great part their contribution that has allowed studies on death in the family context to come to occupy a specific space within studies on death and grieving.

Family system, dyads and intergenerational networks

23As early as the 1990s one finds systemic works concerned specifically with death in the family, especially the death of a child (Pereira, 1998, De Montigny and Beaudet, 1997). The systemic approach is not limited to the individual reaction of the bereaved. The loss of a loved one is considered as an even that upsets the life of the entire family system. The reaction of each of its members following a death has an impact on the group and the reaction of the family as a unit has an impact on each of its members, in a causality sequence that is circular rather than linear (Gilbert, 19996; Lichtenthal et- al., 2010; Walsh and McGoldrick, 2004). Studies in family therapy show the importance of the quality of intra-family relationships on the evolution of the grieving process (Kissane, 2015). In a bereaved family, the sharing of grief and participation of the family in grieving rituals are behaviors that, according to research, contribute to maintaining cohesion. Research on communication within the family in the wake of a death indicates that factors such as honesty and transparence have an observable effect (Kazak and Noll, 2004; Walsh and McGoldrick, 2004). In the event of the death of a child, sharing thoughts, feelings and stories of happy times in the family history helps the family system to remain a living environment for the survivors and to still make sense despite the loss (Nadeau, 2001, 2008). The ability to durably incorporate the experience suffered in the event of a loss into the history of family also appears to contribute to maintaining the couple’s and the family’s cohesion.

24The couple is often a proxy for the study of the family. Thus, a literature review for 2000-2014 shows 24 studies published in English concerning the evolution of relations in the couple following the death of a child (Albuquerque et. al., 2016). The definition of family was connected to the concept of marriage in all of the studies, except for two in which unmarried couples also participated. The variables that were used to examine the effects of death on the couples’ relationship are: factors connected to the circumstances of death (cause of death, illness or accident; age of the child), the presence or absence of surviving children, the specifics of the couple’s relationship and of communication between spouses before the death, as well as family specifics (support network, religion, etc.). Half of these studies rested on quantitative methodologies, with volunteer participants who participated in groups servicing the bereaved. They were for the most part longitudinal studies. The seven studies that were based on qualitative methods were mostly concerned with the effects of the death of a child on the evolution of marriage. Five studies used mixed methodologies and they were concerned with the effect of the death of a child on the survival or dissolution of the couple, on the sex life of the spouses and on the decision to have more children.

25There is also research on intergenerational communication as a means of support inside the bereaved family. The grounded theory analysis of interviews led among 21 grandparents and 19 parents who were part of 10 families who had lost a child (White et. al., 2008) identified the different avatars of this support: presence, acknowledgement, task execution, information. All of the families mentioned the significant help given by at least one of the grandparents and almost all of the families described how ambivalence in the relationships caused complications. In most cases it is the grandparents that help their adult children, rather than the opposite.

Resilience, coping and meaning-making in the family

26As demonstrated by Anaut (2015), the theoretical construction of the concept of resilience incorporates the advances made by systemic theories, developmental theories and psychoanalysis. Resilience allows for multiple definitions: some authors see it as an ability that develops over the long term, others see it as a process connected to the interaction between risk factors and protection factors set into play in the event of hardship, while others see it as the positive result of adaptive strategies (coping).

27Families are studied from the viewpoint of resilience (Delage, 2008) and there have been comparisons between resilience and grief (Lefebvre and Michallet, 2009-2010). It must nonetheless be remembered that death is an experience that relates to the natural course of life, unlike traumatic situations (abuse, poverty, armed conflict, natural disaster) (Hanus, 2009-2010). Research inspired by theories on resilience as an ability examine how the bereaved manage to identify, in both their interior life and their relationships with their family and their close circle, the resources that will help transform the experience of vulnerability connected to losing a loved one, and to transform themselves in the more long term as they become more resilient. Research focusing on resilience as a process is concerned with identifying protection factors and risk factors, not only on the individual level but also on the level of the family and community. Studies that consider resilience as the result of an adaptive process, of the adjustment to loss experienced at a specific moment in the history of the person or of the family, draw on the theories of coping and insist on the immediate response to loss rather than on long term changes within the person or family that may have become more resilient after having overcome their ordeal.

28An examination of the topics considered in the book Living beyond Loss: Death in the Family lets us illustrate how the theories of resilience, coping and meaning-making have progressively become important to the study of death in the family, beginning with their association with the work of systemic perspective scholars. When first published in 1991, this collected volume edited by Walsh and McGoldric focused mainly on the effects of death on the family system according to age, role in the family network and interactions within the extended family. In its second edition in 2004, it was enriched by several new chapters on the resilience of families and their coping strategies and meaning-making, especially when death happened in a traumatizing context (for example, suicide), when grief is not acknowledged by society or is stigmatized, or when a large-scale disaster affects several family members in a community.

29In a survey led among 39 families in which one parent had died, Greeff and Human (2004) highlighted the factors mentioned by the bereaved as those having helped them adjust to the loss: the mutual support between family members – both on the emotional level and in practice –, the strength of family unity, positive personality traits among members of the family (for example optimism), support given by the extended family and friends, as well as beliefs and religious activity. Greeff and Human’s work on resilience in families following loss was later featured as a chapter in a recent textbook on family resilience (Bacvar, 2013: 321-337). The concept of resilience was also used to address the subject of widowhood among gay men (McNutt, 2015). Semi-structured interviews were led with five widows who had lost their spouses in circumstances other than an HIV-related illness. The study led to the identification of three elements that can serve as indicators to distinguish between a pathway in which grief moves towards resilience and a pathway that becomes complicated because the bereaved shows less resilience on the emotional and social levels. These indicators are assertiveness and the ability to gain social validation, the degree of integration of the bereaved in their family of origin and their level of self-esteem.

30So as to highlight the movement towards integrative approaches in the study of the impact of death on family relationships, the following section will outline recent research that borrows at once from the meaning-oriented framework and from risk-resilience and stress and coping models.

A tendency towards the development of integrative approaches.

31Among recent works discussing bereavement in an expanded frame, those by Neimeyer and his collegues (2000, 2001, 2006) are focused on meaning-making after loss, while at the same time making reference to the theories of resilience. Death and mourning are thus considered as both a natural event – a hardship in the face of which humanity shows an ability to adapt – and a socially and culturally constructed human experience that leads to a great variety of adaptive behaviors among individuals and groups (Archer, 2008; Neimeyer et. al., 2002). The rebuilding of meaning in the bereaved family has been examined in its connections with the expressions of resilience among members of the family, between themselves and as members of a larger community (Hooghe and Neimeyer, 2013).

32According to this social-constructivist framework, mourning is, in private as well as in public, a situated interpretive communicative activity (Neimeyer et. al., 2014; 328, 337, 342). In the context of this approach research among bereaved persons examines how meaning is rebuild. It shows that, though narrative activities, one can give meaning to the irretrievable loss of a loved one, rebuild the coherence of their own life story and renegotiate the bonds that will ever connect them to the dead emotionally, symbolically, or though memorialization (Neimeyer et. al., 2010). With their own narratives, the bereaved give themselves new perspectives to interpret what they are going though and to express new observations connected to past steps of their progression.

33Other research builds on both the theory of coping and that of meaning-making after loss. Thus, Folkman (2001) suggests revising coping theory to include meaning-based coping strategies, which add to the strategies aiming to lessen emotional tension and those aiming to solve the problem or alter the situation causing distress, which are already know to scholars. Coping strategies are used to counter adjustment disorders, not only on the individual level but also in situations of interaction within the couple (Stroebe, Schut and Finkenauer, 2013). In a recent study, Bergstraesser and her colleagues (2015) examined the impact of the dyadic coping process on the relationship within the couple following the death of a child after a long, lethal illness. They determined that symmetry and complementarity in the couple when sharing emotions concerning the loss and the choice of acts meant to maintain a connection to the dead child (common dyadic coping) play an important role in the grief work and adjustment to the loss of each of the spouses as well as of the couple.

34Coping theory has also been enriched by a variation: the dual process model of coping, elaborated at the end of the 1990s by Stroebe and her colleagues. From the origin, this model aimed to be integrative (Stroebe et. al., 2006). It is inspired at once by Bowlby’s (1978) attachment theory, the tasks that must be accomplished by the bereaved in order to adjust to loss (Worden, 1983), the risk-resilience and stress and coping models (Lazarus and Folkman, 1984), and theories on meaning-making (Stroebe and Schut, 2015).

35The dual process model of coping with death focuses on two orientations for the adjustment process: an orientation towards loss and an orientation towards recovery. It introduces the idea of an oscillation between these two orientations, an element that has proved to be significant in empirical studies on the individual processes connected to grieving and that could prove useful to the examination of the consequences of death in the network of family relations. The indicators that were previously established for the study of individual processes are now backed by indicators that are applicable to the family (Stroebe and Schut, 2015: 875, figure 1). They allow for the observation of the ways in which the bereaved family journeys in its grief, using both strategies of confrontation to loss and avoidance strategies. Avoidance behaviors are not automatically considered to be inappropriate reactions. It is the flexibility in the use of these multiple strategies that allow the oscillation process to exert a regulatory influence. Empirical studies that have been conducted up until now to test the validity of this model show positive results, especially in the case of complicated grieving processes (Zech, 2006) and grieving experienced by the couple after the death of a child (Meij et. al., 2008). Appling the model in the family context is a promising development.

The contributions in this issue

36The family is a space that reflects the major trends in the evolution of a society. Research on the consequences of serious illness and death on family relationships must take into account the many different types of families: traditional, blended, single-parent, same-sex, immigrant, etc. The articles in this issue open new venues for though in this respect and widen our understanding of the issues connected to serious or lethal illness and to bereavement.

37In their article Claire Van Pevenage and Isabelle Lambotte consider the main issues relevant to the psychological perspective on family issues connected to the serious illness of a child. They highlight the variety of the feelings involved in the diagnosis, before the child is taken in for their treatment, sometimes leading to misunderstandings between the family and healthcare professionals. Using clinical examples, the authors identify the elements of the family system that allow for the management of the illness. Family dynamic is also clarified through highlighting the alternations, convergences, and distancings that mark and pace interpersonal relations as well as the confrontations that sometimes arise. The consequences for the parents in their relationship as a couple are characterized by a reorganization of the sharing of tasks and affects, with an impact on their intimacy through distancing or greater union. Socio-cultural aspects are also significant. They play an important role in the construction, the meanings and the interpretation of the illness, as well as in the expression of feelings and the family relationships that play a part in caring for the sick person – important elements for healthcare professionals to consider. The authors also broach the subjects of the specific intra-psychological tensions caused by illness and of the type of psycho-affective accompaniment that is necessary. This overview highlights the variety of the consequences on the family, according to psychosocial and cultural configurations.

38In their article, Marc-Antoine Berthod, Yannis Papadaniel and Nicole Brzak follow this line of questioning and more specifically consider the triple conciliation that must be established in the advent of a child’s cancer (between domestic organization, work outside the home and medical care for the child). A qualitative study based on in-depth interviews with parents acting as caregivers for persons, including children, affected by a severe illness, in French-speaking Switzerland, highlights the strains affecting parents on a professional level, in a legal context that places limitations on the leave period that can be taken to care for their children. Interpersonal relations, on the professional level as well as on the personal, are also affected, the siblings in particular being subjected to circumstances that force them to grow up and adjust quickly as a reflection of not only the distancing process between members of the family but also within the couple and from the work environment. This distancing, however, goes hand in hand with forms of parental solidarity in the handling of the obligations connected to caring for the child on the temporal and affective levels as well as of the tasks relative to health care or the end-of-life stage. This analysis emphasizes the absence of adequate public policy in the professional field concerning the issue of severe pediatric illness and its demands, affecting the possibilities of an optimal accommodation of the different exacting tasks to which the parents are confronted.

39In their article Manon Champagne, Suzanne Mongeau and Sophie Côté consider the transition of young adults living with a chronic illness to adult healthcare, in an approach inspired by the theory of the logics of action developed by François Dubet. The analysis of the obtained results highlights several types of experience. The experience of transition from pediatric care to adult care varies according to the family: feelings of abandonment, threats to the identity of parents who feel that they are no longer accompanied by the health providers, absence of services, difficulty in reconciling work and childcare because of the absence of institutional options and of the need for frequent rearrangements, reduction of help services, worries and transport, reduction of help with personal care, dealing with different roles and readjusting, absence of understanding from different professionals, financial strains. Other families, especially single-parent ones, are forced by the seriousness of the illness to remain at home as dedicated caregivers, given their absence of support and insufficient financial means. Facing this set of challenges, parents show true resilience and courage, despite the exhaustion that affects them. Several of them are involved as volunteers in different critical actions aiming to make the specific needs of these populations and the issues they face known in different social spaces. This study brings to light the variety of meanings associated to the lived experience, the stress, the logics of action and the patterns (integration, strategy, subjectification) that underlie these family pathways.

40In contrast with the context of pediatric sickness, the article by Pamela Miceli examines late-stage Alzheimer’s disease, affecting older persons, and its repercussions on the family network. Her analysis focuses on the experience of family caregivers, spouses and children, which she studies though the dilemmas they face, a notion that serves as conceptual framework to highlight the crises they go through in caring for the sick, and the possible courses of action. These can raise issues that put the respondents in contradictory situations, facing difficult choices. Through a qualitative study involving interviews with French and Spanish family caregivers, three ranges of normative reference were brought to light: ethical and moral principles underlying obligation, relational experience, and emotions that must considered in their anchoring to grasp the dilemmas. The author shows how these ranges are tested in three contexts: during bathing and body care; surrounding access to care resources; and in connection to interferences with the intimate realm of the sick person. Placing the sick in nursing homes, temporarily or definitely, is also an occasion to experiment with new relational modes on the conjugal of filial levels.

41This set of articles thus brings to light the issues connected with pediatric and geriatric illnesses and their repercussions on family relations, depending on the situation, emphasizing their reorganization and the variety of strategies that are chosen to deal with the heavy burdens associated with caring for one’s family member.

42A last set of articles refers to four situations in which death itself becomes an unavoidable horizon pour the family and even for an entire community: when the home becomes the place chosen to die in, when a spouse becomes invisible to the eyes of a State that does not acknowledge their widowhood, when the impact of the death is felt in a transnational network of family relations and when clustered suicides take place in a community.

43The article by Julien Biaudet and Tiphaine Godfroid describes what happens in the home when the family takes charge of the last moments in the life of one of their own. They give a clear picture of how, in these circumstances, the home becomes “significant in revealing larger, more general social logics”, as well as a space in which the medical act that is executed by experts who fill the premises goes hand in hand with an intervention that encompasses not only the physical space that was until then reserved to family members, but also their psychological space, especially as regards their representations of what “good care” and a “good death” should be. The study concerns France, where, according to the authors, home hospitalization has considerably risen since 2005. The data they obtained indicates that the adaptations that are required of family members in exchange for the professional service they receive bring about a redefinition of their role in the family dynamic and even a reframing of their identity. Far from a “pacified” space, the home appears as an arena where battles are waged for control of the situation. The authors advocate in favor of working towards respectfully explaining the contribution made by each and every actor, so as to give the dying the best care possible while at the same time preserving the physical and mental space the family need to live precious moments, the last ones they will share with the dying person, in intimacy.

44Remaining in the French context, Isabelle Delaunay’s analyses shed light on a situation that is also paradoxical, that of married, unmarried or remarried persons who are not considered widows in a Civil status sense after the death of their spouse. A first quantitative analysis was based on data collected in France by the National institute for demographic studies (INED), relative to the life histories of persons from recent generations who became widowed before the age of 55. The analysis shows that widowhood can become invisible to the eyes of the State: one fifth of widows and one third of young widows seem to disappear from the statistics. That is what also appears from the analysis of interviews with 24 young widows and 5 young widowers, of which over a third were in a common-law type of partnership at the time of the death of their spouse. The author notes that State-sponsored programs and the social support that the bereaved family and persons may have access to is tied to a conception of widowhood that does not take into account the contemporary realities and new family arrangements which lead to multiple reconfigurations. The legal status associated to widowhood is mostly overlooked in our societies, which can lead to outdated legal and administrative dispositions going unnoticed and continuing to be applied automatically, at the expense of these people.

45Another little known situation is that experienced by the families of immigrant background when one of their own dies. Lilyane Rachédi, Catherine Montgomery and Béatrice Halsouet collected data on this topic among immigrant families living in Quebec, from 2010 on. Work from three qualitative research projects is called upon to document the experience of bereavement among these families, in the context of a research project that is still under way. Since this Action-research is still in the exploratory stage, the experience of bereavement lived in the migratory context is presented through the preliminary analysis of a first interview, that describes how a bereaved person car access a local and international support network. Thanks to new communication technologies, it becomes possible for one to be present virtually, which strengthens the solidarity within a family that is afflicted by death. In our societies that are open to immigration research has a part to play to shed light on new issues and inspire social policies that are adapted to the needs of these bereaved families.

46It is also in Quebec that Guillaume Grandazzi conducted his research on deaths that have traumatizing circumstances, namely suicide among adolescents and young adults. He conducted his study in two localities, one of which had an indigenous population. The twenty people met in interviews were between 18 and 75 and they had all been affected by the suicides of at least three young persons in their close circle, with less than twelve months between two suicides. Besides the interviews with family members and relatives of these youths, the researcher collected data from health and social service professionals, municipal authorities and the National police of Quebec (Sureté du Quebec). This socio-anthropological approach goes beyond the context of the family, to involve the whole bereaved community. According to the author, one must examine the individual and collective means of resilience among persons and groups, in order to discuss this phenomenon in its complexities. A diagnostic establishing individual mental health problems among the youths who chose to end their life is not enough. To understand the consequences of these events, we must learn to better know the socio-historical context of the affected communities, their issues concerning culture and identity, the means of family and community governance, the factors leading to their marginalization and their relationships between generations within the family.

47This set of articles adds to the studies referred to in the first two sections of this presentation to illustrate the variety of theoretical and methodological approaches useful to the study of the issues surrounding serious illness, death and bereavement, in different national, cultural and family contexts. More work must follow theses analyses, with a more systematic taking into account of socio-cultural origins, socio-economical conditions, the use of online social media as a means of support as well as the rapid transformations affecting healthcare systems and legal and ethical frameworks, especially as regards medically assisted death. Their repercussion on the treatment of severe illness, on the decision-making processes that the families will have to deal with together with their dying relative, and on mourning processes open new venues for research and will provide food for thought concerning family and intergenerational networks.

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Diane Laflamme et Joseph Josy Lévy, « Severe illness and death in the family context: the contributions of theoretical models and integrative approaches to the advancement of research. »Enfances Familles Générations [En ligne], 24 | 2016, mis en ligne le 15 août 2016, consulté le 21 septembre 2023. URL :

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Diane Laflamme

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École de travail social

Université du Québec à Montréal (Canada)

Joseph Josy Lévy

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Département de sexologie

Université du Québec à Montréal (Canada)

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