Treating Prolonged Grief Disorder: Innovations and Future Directions

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SPECIAL REPORT: DEATH AND DYING

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Grief is a natural response to loss. However, for some, the usual process of adaptation following bereavement is derailed, leading to persistence of painful and disruptive grief currently known as prolonged grief disorder (PGD). PGD, investigated for many years under various labels including “complicated grief,” “traumatic grief,” or “persistent complex bereavement disorder,” was recently added to the DSM-5-TR and the ICD-11.^1,2 It is estimated to affect 9.8% to 11% of bereaved adults, translating to millions of individuals worldwide.³ According to the DSM-5-TR criteria, PGD is diagnosed following the death of a loved one at least 12 months prior to diagnosis, while according to ICD-11 it can be diagnosed at least 6 months after the loss. Persistent pervasive intense longing and yearning for or preoccupation with the deceased are required for the diagnosis, along with at least 3 of 8 additional symptoms: identity disruption, a marked sense of disbelief about the death, avoidance of reminders that the person has passed, intense emotional pain related to the death, difficulty moving on with life, emotional numbness, a feeling that life is meaningless, intense loneliness and/or a sense of detachment from others. PGD is associated with functional impairment and suicidal ideation.^4,5 Unusual for a new diagnosis, proven efficacious treatments are already available.^6-8 Improving access to treatment for PGD is an important public health priority. Here, we consider the ongoing challenges of dissemination and implementation of 1 prominent evidence-based treatment, including a culturally informed adaptation for communities of color at increased risk for developing PGD.

Treatment for Prolonged Grief Disorder

Prolonged grief treatment (PGT) was the first treatment approach for PGD to be tested and proven efficacious. Since then, other similar psychotherapeutic approaches for PGD have been developed and are continuing to emerge. Most of these are versions of cognitive behavior therapy (CBT).^9-11 Formats include online, individual, and group, in outpatient and acute settings.^12,13 PGT is a semi-structured 16-session treatment targeting acceptance of the reality of the loss and restoration of the capacity for well-being. The conceptualization of grief and adaptation to loss is based in attachment theory and an understanding of attachment loss as a traumatic stressor. The treatment uses a modified form of prolonged exposure for posttraumatic stress disorder as the core loss-focused component and adds a focus on restoration of well-being based upon principles of self-determination theory.^14,15 PGT is sequenced to introduce and work with 6 themes: 1) accepting grief and managing grief-related emotions, 2) seeing a promising future, 3) strengthening relationships, 4) narrating a story of the death, 5) learning to live with reminders of loss, and 6) connecting with memories of the person who died. Two randomized clinical trials demonstrated that PGT is more effective than interpersonal psychotherapy for middle aged and older adults.^6,7 A third RCT testing the efficacy of antidepressant medication when administered with or without PGT, further supported PGT efficacy.⁸ Other approaches include third wave therapies such as dialectical behavioral therapy,¹⁶ and non-CBT approaches such as narrative therapy, interpersonal psychotherapy, and eye movement desensitization and reprocessing, though they have not been tested for efficacy.^17-19

Cultural Adaptation and the Impact of COVID-19

Grief is a social and personal experience, and all cultures have ways of uniquely responding to bereavement. Circumstances of a death also influence grief, and COVID-19-related deaths often include risk factors for PGD. For example, during the COVID-19 pandemic, Black Americans were at a higher risk of dying from the virus due to disparities in health care access and other inequities, increasing both the rate of bereavement in Black communities and the likelihood that bereaved loved ones develop PGD. Within Black communities in Harlem specifically, COVID-19-related deaths occurred against a background of COVID-19-related financial, employment, caregiving, and other social inequities. The community is also experiencing ongoing dangerous and unchecked racism, with its associated inequities and injustices such as racial profiling, police violence, disparities in health, access to medical care, educational and economic opportunities, mass incarceration, voter suppression, employment discrimination, and higher exposure to environmental hazards. These ongoing disparities and inequities add to the burden of bereavement, reduce availability of effective social support, and increase the likelihood of mental and physical grief complications in communities such as Harlem.

There is an urgent need for scalable, culturally tailored grief interventions for Black Americans broadly, and for the Harlem, New York, community specifically. While there are strong social networks and high levels of social and emotional intelligence among community members in the predominantly Black Morningside Heights/Central Harlem and East Harlem communities surrounding Columbia University, this community has not had access to adequate resources to provide all that is needed to support bereaved families, even under ordinary circumstances. To address this disparity, the Center for Prolonged Grief (CPG) at Columbia University collaborated with the SAFELab at the University of Pennsylvania (which was formerly at Columbia University’s School of Social Work) and the Harlem-based activist group known as “Mobilizing Preachers and the Community” (MPAC) to explore how to improve access to and culturally-tailor PGD treatments and resources for the Black Harlem community.

The research group conducted a series of over 30, 90-minute focus group sessions with 2 cohorts of senior Harlem community leaders, and 2 cohorts of Black youth. All 4 groups highlighted feelings of desensitization and numbness as a common response to successive and compounding losses. Both groups heavily argued that individuals are not able to properly process grief because they are unsure of where to go when in need of help. Despite this, the groups valued the opportunity to discuss grief and underscored the need to address community grief as an important area of intervention. Issues such as gentrification, community violence, and reverberations of intergenerational and racialized losses were discussed and highlighted as potential issues to discuss in PGD treatment. Focus group participants often discussed strength and resilience being a result of dealing with grief, and a way of coping to continue living daily lives, adapt to the losses, and continue to address their personal goals.

Although participants mentioned that COVID-19 inhibits individuals from grieving properly, they also mentioned that they found ways to still hold culturally important grieving processes (ie, funerals/homegoings via Zoom). Participants also discussed ideas about helpful interventions for the Harlem community, including a review of GriefCare for families, created by the CPG. They provided feedback on ways to modify this digital intervention to make it a culturally appropriate tool for meeting the needs of the Black Harlem community. These changes included appearance modifications (eg, included more culturally relevant pictures and making the appearance more vibrant) and content additions (eg, adding resources related to community violence, collective losses, and other stressors in the community such as gentrification and substance use). Additionally, focus group members discussed multiple ways that grief researchers and treatment providers can improve engagement with Black communities in the future. For instance, both community leaders and youth mentioned the importance of engaging in community outreach as an area of improvement. The community leaders suggested starting with educating communities on the concept of PGD, and ways in which technology and digital interventions can be leveraged to meet the needs of marginalized communities.

Successes, Challenges, and Innovations in Training Clinicians

An important next step following the development of an efficacious treatment is to train a workforce of therapists who can provide it. This is needed to take evidence-based treatments from domain of research into routine clinical practice. The CPG was developed to provide a venue for dissemination of information about PGD and its treatment. To date, 3370 therapists have attended 1- and 2-day workshops held on site by the CPG in both in-person and online formats. The 1-day workshop consists of an overview of the treatment framework for understanding grief and adaptation to loss, strategies and procedures for screening and diagnosis of PGD, and an overview of PGT. The 2-day workshop provides an overview of treatment principles and treatment framework and a step-by-step review of the treatment procedures with video illustrations, troubleshooting scenarios, and opportunities for question and answer. CPG also maintains a website with extensive information, recordings of monthly webinars, and a history of our work. In addition, the CPG obtained funding from the National Institute of Mental Health to collaborate with the Center for Telepsychology in developing an asynchronous, 8-week didactic training on PGT that includes concepts, principles, and procedures used in the treatment, as well as web-based multimedia examples of clinical implementation of PGT. A recent evaluation of this online training in a sample of 236 therapists (with 196 completers) found significant improvements in pre-posttests of knowledge and clinical decision-making related to PGD diagnosis and treatment.²⁰ Trainees found the course enjoyable and useful.²⁰

Given that between 2020-2023, 79% of participants in the 2-day training were very satisfied with the training, and planned to use PGT in their practice, we were interested in whether the treatment was indeed being implemented, and if not, why not. Barriers to implementation of evidence-based practice tend to be divided into 2 categories: therapist factors and external factors. External factors include client symptom severity (eg, the treatment is not perceived to be “enough” for the client need), or limited organizational support for training, supervision and implementation.^21,22 Therapist factors include level and nature of clinical experience,^21,23 individual attitudes to evidence-based practice,²² and burnout, which may compromise willingness to learn and implement new modalities.²³ Overall, there are implementation challenges for both novice and experienced therapists. Novice therapists’ ability to implement evidence-based practice may be compromised by low self-efficacy, while more experienced therapists may hold beliefs about the generalizability of evidence-based practice to complex patients, have habitual ways of framing and working with problems, or have limited access to training and supervision to learn new modalities.^22,23 However, extant empirical literature on implementation of evidence-based practices has primarily considered external factors such as patient characteristics or administrative support.^22,24

Foundational therapist education rarely includes training in ways to understand and treat grief. This leads to discomfort with the subject, despite its ubiquity. PGT requires confrontation with death and loss, emphasizing mortality salience for treatment providers. For therapists who do not often work with grief, doing so can elicit thoughts about their own potential or actual losses or their own death. Many have difficulty regulating the resulting anxiety and other emotional responses. “Terror Management Theory” posits that confrontation with death can also be associated with a tendency to rigid adherence to a therapeutic style, an emphasis on being “right,” and efforts to bolster self-esteem, as a way of managing the difficult emotions.²⁵ Elements of evidence-based grief therapy require confrontation with the reality of the loss and this may also be difficult for therapists because it is painful for clients and causes distress. Additionally, implementation challenges have historically been linked to the absence of an official diagnosis and this was an important reason we worked to support inclusion of the PGD diagnosis in the DSM-5.

We conducted a survey study of 236 participants (93% female, 70% White, M(age) = 51.29, 59% social workers) who had previously attended a PGT training offered by the CPG. Our aim was to characterize the sample in terms of experience, perceived knowledge, skills, and confidence treating PGD, comfort talking about grief and loss, and reported implementation of the treatment. We found that a larger proportion of therapists with 5+ years of experience (72.8%) felt somewhat or very confident treating an individual with PGD compared with therapists with 5 years or less experience (39.7%). But approximately equal percentages (84.2%; 85.2%) of each group endorsed high comfort talking about grief and loss. Very few individuals endorsed not at all feeling comfortable talking about grief and loss. Not surprisingly, participants with less comfort talking about grief and loss were also less likely to be confident implementing PGT. Of note, 100% of therapists who felt “not at all” comfortable talking about grief and loss also felt not at all confident implementing PGT, while 70% of all therapists who felt somewhat comfortable talking about grief and loss also felt at least somewhat comfortable implementing the treatment. Interestingly, close to 10% of individuals who felt only somewhat comfortable talking about grief and loss felt very confident implementing PGD.

Therapists at both experience levels generally reported at least adequate skills in PGT. Both the 5+ years of experience group (49.3%) and the less than 5 years’ experience group (46.6%) tended to view their knowledge of PGT as adequate, perhaps reflecting similar training experiences. However, 16.4% of the 5+ years of experience group perceived their knowledge of PGT as strong, while only 5.5% of the less experienced group had a similar view. Relevantly, 51% of therapists with less than 5 years’ experience and approximately 30% of therapists with 5+ years of experience had treated only 0-1 PGD cases at the time of the survey, while 46% of more experienced therapists and 36% of less experienced therapists had treated 2-10 cases. Additionally, 4% of less experienced therapists and 8% of more experienced therapists had treated 10-20 PGD cases, while 3% of less experienced therapists and 13% of more experienced therapists had treated more than 20 PGD cases. It appears that therapists perceived knowledge, skills, and confidence in PGT is greater after a workshop experience among those with more experience, and unrelated to having worked with PGD.

Therefore, clinicians perceive themselves to be confident with PGT and comfortable with grief, knowledgeable and skilled in the treatment, but both novice and experienced therapists who responded to our survey had treated relatively few PGD cases. This could be explained by the therapist factors explained previously, by difficulty recognizing and diagnosing PGD, or may reveal organizational limitations in terms of evidence-based practice more broadly. Implementation requires attention to both therapist and systems factors, and providing training and workshops is likely not enough to facilitate implementation.

Conclusions and Future Directions

Overall, PGT training is well received by clinicians, though there remains scope for investigating barriers to implementation of the treatment. In addition, given the impact of sociocultural stressors, coupled with the disproportionate impact of COVID-19 on Black communities, our research team is finalizing the modification of a digital intervention named “GriefCare for Harlem.” This is a self-guided digital app that is informed by our focus groups and will be refined through community consultation. We eventually plan to evaluate this culturally tailored digital intervention in a randomized controlled trial. Our hope is that culturally relevant modifications of evidence-based content can lead to the development of an accessible, feasible, and acceptable digital intervention for acute grief or prolonged grief disorder for this community.

Ms Spencer-Laitt is a doctoral student in clinical psychology at Boston University. Dr Willis is an assistant professor in the department of psychology at the University of Maryland. Dr Skritskaya is a clinical psychologist who currently holds the position of adjunct associate research scientist at the Center for Prolonged Grief. Dr Shear is the Marion E. Kenworthy Professor of Psychiatry at Columbia University and the founding Director of the Center for Prolonged Grief at Columbia School of Social Work.

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