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Prolonged grief disorder

→ Many theoretical approaches conceptualize bereavement and its recovery process.

→ Culture profoundly shapes the bereavement experience, influencing emotional, cognitive and behavioral responses to loss.

→ The introduction of prolonged grief disorder into the major classifications is fuelling debates about the medicalization of bereavement.

→ Numerous studies support the existence of prolonged grief disorder as a psychiatric clinical entity distinct from others and for which specific treatment is effective.

→ Several tools can be used to screen for prolonged grief disorder, but there is a lack of tools validated in the French language and adapted to children.

Foreword

The recent COVID-19 pandemic has profoundly disrupted our societies, leading to a significant increase in mortality rates worldwide. According to data provided by Santé publique France, between May 2020 and June 2023, the number of deaths worldwide will be around 7 million, with an alarming two-thirds of these losses occurring in Europe.

This exceptional pandemic context has put a strain on the clinical practices and social support traditionally provided to people at the end of life and to those in mourning, raising fears of an increase in the prevalence of complicated bereavement, now identified under the term "prolonged grief disorder "1.

Faced with these unprecedented circumstances, it has become essential for healthcare professionals to be better informed about bereavement reactions, and to be able to distinguish potential pathological manifestations2.

In this context, and in line with the evolution of international standards such as ICD11, which had already incorporated "prolonged grief disorder" into its 2018 classification, the American Psychiatric Association (APA) published new diagnostic criteria for the disorder in March 2022, marking its introduction into the revised version of DSM-5.

This development offers an opportunity to focus on this recent nosographic entity, but also to broaden the subject to include the theoretical contributions and cross-cultural considerations that underpin our understanding of bereavement.

What is grief?

Dossier scientifique deuil prolongé

Initially, the term "deuil" comes from the popular Latin "dolus", itself derived from the classical Latin "dolor" meaning "pain". In the French language, a single word is used to designate the different facets of grief. The term is used to designate the pain we feel following the death of someone, the death of a loved one, or to refer to the outward signs (of mourning) "consecrated by usage" (Le Robert, n.d.).

In English, the lexicon is richer, with several terms used to nuance different aspects of grief. Thus, the term "bereavement" refers to the loss of an attachment figure, "grief" is used to evoke emotional, cognitive and behavioral reactions such as grief, sorrow, sadness, etc., and "mourning" refers to conscious behavioral manifestations, often influenced by culture, and therefore associated with the more social or external aspects of the loss. Thus, after the death of a loved one (bereavement), an emotional, cognitive and behavioral response (grievance) frequently arises, though not systematically, and thanks to mourning work (mourning), it is sometimes possible to attenuate this response.

Nevertheless, for some people, this mourning process is impossible, and they remain stuck in intense grief reactions. In this respect, various terms are commonly used indiscriminately to describe this specific condition: complicated grief, complex persistent grief, or more recently, prolonged grief disorder. In an effort to deepen our understanding of bereavement, whether "normal" or "pathological", many contributions have emerged, and continue to emerge for over a century now.

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What are the major contributions to understanding it?

Although many works on bereavement are not unanimous on what they consider to be dysfunctional in the grieving process, it is important to point out that not all of them necessarily refer to the same aspects of bereavement (bereavement, mourning, grief). Consequently, all contributions are not systematically opposed to one another, but can be mutually enriching. Please note that the following presentation is not intended to be exhaustive, but rather to provide an overview of the diversity of theoretical and empirical work in the field over the last few decades.

Linear approaches

Sigmund Freud

According to Sigmund Freud (1917), the work of mourning is described as a normal, adaptive stage that enables the libido to gradually detach itself from the beloved object and reinvest itself in new objects, leading to the resolution of grief. Melancholia, on the other hand, was seen by the author as a pathological and destructive reaction to loss, resulting in a destabilization of the libido and an inability to clearly identify the loss suffered. Thus, in this approach, the grief experienced in bereavement is here considered a normal response, whereas melancholia, due to its pathological nature and depressive symptoms, was seen as an abnormal response to a similar event.

Elisabeth Kübler-Ross

Elisabeth Kübler-Ross's (1969) five-stage model was originally developed to describe the stages that patients with terminal illnesses go through up to the acceptance of their own death, and was later extended to the patient's loved ones who may be going through a similar experience. Five phases are proposed: denial, anger, bargaining, depression and acceptance. These stages are not described as linear, as the individual may navigate between them, relive them or experience them simultaneously. Despite the impact and widespread adoption of this model, it has been criticized for its flimsy theoretical underpinnings and overly linear vision, implying that there is an ideal way to grieve.

Attachment and bonding approaches

Dennis Klass

Klass, Silverman and Nickman's (1996) Continuous Bonding approach departs from some past considerations that see the function of grief and mourning as breaking ties with the deceased so that relationships can be reinvested in the present. Klass et al.'s approach considers that mourning does not necessarily imply letting go or moving on, so that a healthy resolution of grief can be envisaged. On the contrary, it involves maintaining a "continuous bond" with the deceased. This perspective emphasizes how relationships with the deceased can continue to evolve and have meaning after their death.

John Bowlby

John Bowlby's (1980) theory of attachment describes 4 stages in the grieving process. First, the mourner goes through a state of numbness, disbelief or shock. This then evolves into a phase marked by desire or search for the deceased, often accompanied by anger and protest. In the third stage, the search for the deceased ceases, and the mourning process gives way to despair and disorganization, giving way to feelings of depression and desolation. The fourth and final phase is that of reorganization, which takes shape when the loss is accepted and the bereaved person gradually returns to his or her former interests. The inability to achieve this reorganization may be indicative of a persistent fixation on the lost attachment figure, preventing the bereaved person from moving on.

Specific and innovative approaches

Erich Lindemann

The pioneering contribution of Erich Lindemann (1944) is a description of the symptoms and emotional responses observed in the bereaved. Based on his clinical observations, Lindemann developed a five-phase theory of grief. Several typical reactions to loss are identified: somatic disturbance (loss of appetite, exhaustion and lack of motivation, etc.), preoccupation with the memory of the deceased, overwhelming guilt, hostile or angry feelings, and difficulty in carrying out daily routines. According to the author, for these reactions, which are sometimes too severe, to diminish, mourning work is necessary, involving detachment from the deceased, adaptation to an environment devoid of the deceased, and the formation of new relationships.

The theory of symptom networks applied to psychopathology after the death of a loved one (2021) conceptualizes mental disorders as arising from "self-reinforcing" interactions between the symptoms of a pathology9. This theory, although still in development, offers an alternative approach to understanding bereavement and, more specifically, prolonged mourning10. It suggests that the thoughts, emotions and behaviours that occur during bereavement are interconnected in a network of reactions that can be self-reinforcing, leading to persistent grief in some people. This theory emphasizes that the biological and social disturbances induced by prolonged grief can, in turn, influence and interact with the grieving process.

Dynamic approaches

Georges Bonanno

The resilience perspective of George A. Bonanno (2002) emphasizes the central role of resilience in the grieving process and reactions to trauma. In a book entitled "The Other Side of Sadness: What the New Science of Bereavement Tells Us About Life After a Loss", Bonnano challenges the idea of stages of grief and, as a result, questions many of the principles underlying traditional conceptions of bereavement, which often lack a scientific basis. His pioneering contributions to the field reveal a heterogeneity of responses to loss that can be grouped into a relatively small number of trajectories (chronic, delayed or absent grief, depression, etc.), one of the most common of which is resilience.

Margaret Stroebe and Henk Schut's dual-process model of grief adjustment (1999) offers a dynamic view of the grieving process, integrating elements from attachment and stress theories. It aims to overcome the shortcomings of traditional approaches, criticized for their lack of empirical evidence and cultural and historical validity. Since its inception, numerous updates and revisions have been made to refine its clinical application and increase its relevance in response to recent advances in the field of bereavement. Originally designed to explain the grieving process in widows and widowers, Stroebe and Henk's original model describes bereavement as a dynamic process confronting the individual with two categories of stressors: those related to loss, such as crying and ruminating, and those related to restoration, such as increased responsibilities and the adoption of new roles following the loss of a spouse. The constant oscillation between loss confrontation and restoration strategies enables the grieving person to alternate between active expression of emotions and the search for meaning, and avoidance, which can include engaging in new activities or bypassing painful memories. Thus, in this approach, a balance between confrontation and avoidance is deemed necessary for healthy adaptation to grief.

Does culture shape mourning?

The cross-cultural study of bereavement is particularly well-suited to shed light on this issue. This cross-cultural approach, which brings together different disciplines such as psychology, anthropology and sociology, teaches us that our vision of death and mourning is influenced by our culture, giving rise to different attitudes and mourning responses. Thus, social scientists reveal that emotional and behavioral reactions to loss are influenced and modulated by the imprint of cultural norms.

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In addition to approaching death as a biological fact, anthropologist Louis-Vincent Thomas has, in his many contributions, apprehended death as a social and cultural construct.

By comparing African civilizations with Western societies, the author highlights the cultural contrasts that exist around death. In his book "Anthropologie de la mort" (Anthropology of Death), published in 1975, the researcher points out that in certain traditional African societies, death is diametrically more integrated into daily life than in Western societies.

In these traditional societies, funeral rituals are major social events that strengthen community ties.

This is an important distinction from Western societies, which seem to have distanced themselves from death, rejecting it, silencing it and medicalizing it17.

A critique of traditional models

By adopting a global approach, the intercultural study of grief moves away from psychological models that universalize grief, reducing it to a series of successive stages, or distinguishing it into "normal" and "pathological" forms. On the contrary, in addition to highlighting a diversity of attitudes and responses to death, studies in this field have also revealed that the family environment and cultural institutions, which impose certain norms, can modulate grief, encouraging its expression or, on the contrary, repressing it or imposing silence in the face of death. The same research also reveals that when an individual's grieving process deviates from culturally established norms, it is often perceived as deviant or problematic.

 

Between rupture and continuity

Some cultures see mourning not as a rupture but rather as an affirmation of the continuity of the bond with the deceased, as evidenced by extensive funeral rituals and extended periods of mourning. In the West, the dominant expectation is of a rapid, orderly "recovery". A bereavement that lasts beyond this expectation may be the result of the cultural environment.

As a researcher or clinician, adopting a culturally sensitive perspective when assessing or labeling protracted grief is a condition that reflects the tensions between the individual's need to express and acknowledge loss, and the collective need to maintain social cohesion and respect societal norms. Supporting bereaved individuals is therefore crucial to fully appreciate the complexity of their experiences and reactions to death. This would avoid pathologizing reactions which, while outside the norm in one culture, may be perfectly normal in another.

 

Can certain grief reactions constitute a disorder?

Debates about the recognition of certain bereavement reactions as pathological are not new. The classification of prolonged bereavement as a mental health disorder only serves to rekindle debates between professionals that have been going on for several decades now. What's more, given that the loss of a loved one is almost a compulsory, not to say almost systematic, stage in the grieving process, it's easy to see why the psychiatric treatment of bereavement is such a complex issue.

When grief persists

The grief caused by the loss of a loved one is often very intense immediately after the person's death, and gradually diminishes over time. For some people, the grief persists and leads to complications in their day-to-day functioning. In such cases, the American Psychiatric Association (APA) calls it "prolonged grief disorder" (PGD), and defines it as "intense, persistent grief that causes problems and interferes with daily life".

The complex process of classifying protracted mourning

In the midst of the revisions to the fifth version of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) and the eleventh edition of the International Classification of Diseases (ICD11), expert committees were set up to examine the validity, specificity and possible treatment options for prolonged grief disorder. Although the DSM-5 editorial task force had seriously considered including the disorder in the manual, the proposal was ultimately rejected in 2013.

"Complex persistent grief" was therefore included in Section III of the DSM-5 (2013), a section reserved for disorders requiring further research before they could be considered well-established. A few years later, in 2018, the World Health Organization decided to include prolonged grief disorder in its International Classification of Diseases (ICD11), and the American Psychiatric Association (APA) finally included the disorder in the 5th revised version of its Statistical Manual of Mental Disorders (DSM-5 TR) 4 years later.

A natural medicalization of grief?

For Marie-Frédérique Bacqué, professor of psychopathology and clinical bereavement specialist, this nosological entity does not take sufficient account of the notion of culture and the life history of the bereaved. For her, the simple assessment of symptoms is an impoverishment that neglects the dimension of causes, which are nonetheless to be found in society and culture. For Patrick Landman, psychiatrist and psychoanalyst, who has spoken extensively on the subject, the disorder does not form a set of symptoms capable of constituting a pathological entity, nor is it capable of revealing a clinically compromising situation. According to him, it is nothing more than "a set of signs and behaviours that belong to ordinary depression and others to post-traumatic stress, fantasies, delusions and social withdrawal".

Other healthcare professionals, such as psychiatrist Eric Bui, are quick to point out that, at the time of its inclusion, prolonged grief disorder was the mental health disorder with the most scientific basis. He points out that "there are many criteria for determining what a disorder is: biological basis, response to treatment, ability to help people, being distinct from other pathologies...", implying that PDD meets all these requirements.

Is there any scientific evidence to support its existence?

The data

- 7-10% of bereaved adults will experience persistent symptoms of prolonged grief.

- 5-10% of adolescents and children will suffer from depression, post-traumatic stress disorder (PTSD) and/or prolonged grief disorder as a result of bereavement.

- 80% of people with prolonged grief suffer from poor long-term sleep.

- 49% prolonged grief disorder after a violent death.

- Prevalence of 1.51% (ICD 11) and 1.2% (DSM-5 TR).

 

Is there any scientific evidence to support its existence?

Recent studies have highlighted the influence of organizational factors on the risk of vicarious trauma, going beyond the previous consideration of individual factors such as personal history of trauma or the professional's level of empathy. Thus, some authors emphasize that organizations have a key role to play in preventing and managing worker well-being, notably through the quality of supervision and support policies.

Other researchers specializing in the subject, such as Boelen and colleagues, indicated in 2020, a few years before the disorder was introduced, that it would make it easier to identify bereaved individuals in need of help, and to set up and reimburse appropriate care. Echoing other mental health disorders, they nevertheless admit that individuals diagnosed with PDD will not escape the risk of stigmatization. However, they argue that the benefits of this advance will balance out any potential drawbacks, contributing to better care for these patients.

In 2009, a study conducted by researchers at Yale University (USA) determined the psychometric validity of diagnostic criteria for PDD. The researchers brought together a multidisciplinary team of experts in psychiatry, bereavement and nosology to reach a consensus on clinical diagnostic criteria for PDD. The study used data from a cohort of 317 recently widowed individuals living in Connecticut, USA. Each participant was interviewed at the start of the study, on average 6 months after the loss of their spouse.

Follow-up interviews were then conducted 11 and 20 months after the loss, and symptoms were assessed using a modified version of the Complicated Grief Inventory. After discarding the symptoms that were least likely to provide useful and meaningful information for the diagnosis and management of the disorder, the researchers determined those that were most indicative of the disorder, as well as the optimal combinations of symptoms for making an accurate diagnosis of PDD. Numerous other international studies confirm the scientific evidence supporting the existence of prolonged grief disorder.

Not to be confused with the "widowhood effect

The loss of an attachment figure, whatever the cause, would put the bereaved person at increased risk of morbidity and mortality. A 2015 study revealed that the widowhood effect would begin before the loss of a spouse29 . In other words, certain previous experiences may already be having an impact on the health of future widows and widowers.

The cause? Bereaved people tend to neglect their own well-being in the year preceding the loss of their loved one, as evidenced by a reduction in the use of prescribed medication. Another possible explanation is the burden of caring for the bereaved, itself a source of adverse health effects.

 

How is prolonged grief disorder identified?

To make a diagnosis of prolonged grief disorder according to DSM-5 TR, a period of observation of at least 6 months is required in adolescents and children, compared with 12 months for adults, whereas in ICD-11, the grief reaction must persist for at least 6 months, all age categories combined (Criterion A). Both classifications recognize that, for a diagnosis of PDD, the disturbance must result in impaired functioning in various spheres: professional, social, educational, etc. (Criterion D), and for an abnormally long time, exceeding the social, cultural or religious norms expected by the culture and context in which the individual finds himself (Criterion E). However, unlike the ICD-11, the DSM-5 TR specifies that to diagnose PDD, symptoms must not be better explained by major depressive disorder, post-traumatic stress disorder, another mental disorder, or attributable to the effects of a substance (F).

In addition, it is crucial that healthcare professionals remain vigilant for people at increased risk of developing PDD, such as those with a psychiatric history. It's also important to note that beyond the specific complications directly linked to the grieving process, such as prolonged grief disorder, other types of complications can also occur. These latter, termed non-specific because they are not exclusive to bereavement, include, for example, major depression, PTSD, anxiety disorders and conduct disorders.

Faced with the numerous names used in the past, the notion of "prolonged grief disorder" has been retained in order to support the duration of symptoms as one of its main characteristics, but also to avoid confusing it with post-traumatic stress disorder, with which it shares certain characteristics.

How is prolonged grief disorder different from depression?

Although bereavement and a major depressive episode can frequently coexist, and have similar symptomatology (loss of interest, guilt, suicidal ideation, etc.), they are distinct in biological, pharmacological and clinical terms. Symptoms such as grief and omnipresent thoughts about the deceased are not present in the major depressive state, which includes characteristic neurovegetative and psychomotor symptoms. What's more, antidepressants, which are widely used to treat depression, do not improve symptoms of prolonged mourning, and neurobiological data, although still limited at present, suggest specific features of PDD (reward circuitry, oxytocin blood levels, brain activity, etc.).

The importance of distinguishing PDD from PTSD

Historiquement le deuil et le trauma étaient fréquemment étudiés ensemble. C’est-à-dire que la réaction liée au deuil et la réaction en lien avec le trouble du stress post-traumatique étaient vues pendant longtemps comme une sorte de continuum explique le psychiatre Eric Bui, spécialiste international du deuil.

Aujourd’hui, le TDP et le TSPT sont reconnus comme deux troubles distincts et nécessitent des traitements différents. Le TDP est spécifiquement lié à la réaction à la perte d’un être cher, tandis que le TSPT peut découler de divers événements traumatiques et se caractérise par une réaction marquée par la peur et l’évitement. Toutefois, une association entre TDP et le trouble de stress post-traumatique est possible dans certains contextes. Cette association peut survenir, par exemple, lorsqu’un individu est confronté à la Vidéo replay du webinaire sur le trouble de deuil prolongé du 29 juin 2023 par le Pr Eric Bui découverte soudaine du corps d’un proche, décédé ou gravement blessé, ou lorsqu’il assiste à sa mort violente. Dans ces situations, une prise en charge clinique complexe est souvent nécessaire pour traiter conjointement ces deux troubles.

→ Video replay of the webinar on prolonged grief disorder on June 29, 2023 by Pr Eric Bui

What assessment tools are available?

In the field of bereavement psychopathology, several screening and assessment tools have been developed over the years to identify and measure the signs of complicated grief and, more recently, the symptoms of prolonged grief disorder.

A culturally sensitive tool

The loss of an attachment figure, whatever the cause, would put the bereaved at increased risk of morbidity and mortality. A 2015 study revealed that the widowhood effect would begin before the loss of a spouse. In other words, certain previous experiences would already be having an impact on the health of future widows and widowers.

The cause? Bereaved people tend to neglect their own well-being in the year preceding the loss of their loved one, as evidenced by a reduction in the use of prescribed medication. Another possible explanation is the burden of caring for the bereaved, itself a source of adverse health effects.

 

Tools developed mainly for adults

As early as the 1990s, efforts were made to develop psychometric instruments to measure symptomatic distress associated with bereavement in adults. Even today, one of the most widely used tools is the Complicated Grief Inventory. Published in 1995, this tool has undergone several revisions over the years, finally evolving into the Prolonged-Grief-13 in 2009. Since the advent of TDP in recent classifications, more recent tools that conform to its new definition have emerged:

The Prolonged Grief-13, PG-13-Revised (2021)

Originally published in 2009, this self-report scale has recently been revised to correspond more closely to the new DSM-5 TR criteria, but to date, no French validation or adaptation has yet been carried out. Although its recent revision reveals good psychometric properties in Western samples, further research is needed to confirm its performance in more ethnically diverse populations.

The Traumatic Grief Inventory-Self Report Plus, TGI-SR+ (2022)

Available in the French-Canadian language, this scale is currently the only robust instrument to offer an assessment of the symptoms of prolonged bereavement disorder according to the DSM-5 TR and ICD-1139 criteria. What's more, in 2022, a study confirmed its potential use in both research and clinical settings with French bereaved populations.

The need to develop an interview tool for TDP diagnosis

The In both clinical and research settings, it is often necessary to deepen an assessment to obtain more nuanced and detailed information about an individual's bereavement experience. Although self-report scales are useful, they are not sufficient. They have modest concordance with structured clinical interviews, and also tend to increase the incidence of a disorder.

The Traumatic Grief Inventory-Clinician Administered, TGI-CA. (2023)

This new (hetero-administered), f iable and valid interview tool can be used to screen for PDD symptoms and assess their severity, in line with the DSM-5 TR and ICD-11 diagnostic criteria. However, the TGI-CA is not a substitute for diagnostic clinical interview tools, which are still non-existent for PDD, and there is currently no French-language version.

A lack of validated tools for children and adolescents

For children and teenagers, the reality is somewhat different. Specific instruments have also been developed, but they have received little psychometric analysis. For this reason, Toni Zhang and colleagues (2023) carried out a literature review of existing assessment tools for evaluating bereavement in children and adolescents.

Of the 24 instruments identified, 4 were found to assess prolonged grief in both children and adolescents: IPG-A (2012), IPG-C (2012), PGQ-A (2016) and PG-13 Child (2021). Unfortunately, most of the tools identified by the researchers still have limited validity. Further studies are therefore needed to validate new instruments adapted to these populations.

What are the research prospects?

→ Question for Pr Eric Bui, Professor of Psychiatry at the University of Caen - CHU de Caen and head of the Normandy regional psychotrauma center.

The sources for this dossier are available in the pdf document at the end of the page.
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