
Victor Fornari, MD, MS

Sarah Dienstag Becker, MD
Co-Chief Fellow, Child & Adolescent Psychiatry, Donald & Barbara Zucker School of Medicine at Hofstra/ Northwell

Project TEACH E-Newsletter

Persistent Complex Bereavement Disorder
Project TEACH has been working with pediatric practices in New York State since 2010. The project, funded by the New York State Office of Mental Health, has supported and strengthened the critical role that New York State pediatric primary care providers (PCP’s) can play in the early identification and treatment of mild-to-moderate mental health concerns for children ranging in age from 0 to 21.
One component of the Project TEACH /NYS American Academy of Pediatrics partnership in 2021 is a series of monthly newsletters touching on topics of concern to pediatricians and to parents.
And now to our topic of this Project TEACH Pediatric Newsletter: "Persistent Complex Bereavement Disorder”
By:

Victor Fornari, MD, MS

Sarah Dienstag Becker, MD
Co-Chief Fellow, Child & Adolescent Psychiatry, Donald & Barbara Zucker School of Medicine at Hofstra/ Northwell
According to the CDC, to date more than 140,000 children in the United States have a lost a caregiver due to COVID-19. Some have described this increase in orphanhood as a hidden pandemic in the United States and worldwide. With 1 in 500 children experiencing loss of a direct caregiver, and likely many more exposed to death of another relative or family friend, pediatricians are more likely to see children exhibiting signs of grief in their offices. It is imperative for the primary care physician to be able to distinguish the normative grief process from a psychiatric disorder.
The DSM-5 includes Persistent Complex Bereavement Disorder in the section on Conditions for Further Study with an estimated prevalence of 2.4-4.8%. Colloquially, this is often referred to as prolonged grief. In children, persistent complex bereavement can be diagnosed after 6 months of symptoms (12 months in adults). Symptoms do not need to be present daily but should be present on more days than not. Symptoms must include at least 1 of the following:
- Persistent yearning for the deceased. In young children, this yearning may be expressed through play and behavior rather than words.
- Intense sorrow and emotional pain in response to the death
- Preoccupation with the deceased
- Preoccupation with the circumstances of death. Again, in young children, this may be expressed through play and extend to preoccupation with fear of other deaths
Additionally, at least 6 of the following must be experienced as well from either category:
Reactive distress to the death:
- Marked difficulty accepting the death. In young children, this should be assessed against what is expected of their developmental stage as very young children do not process death as permanent
- Experiencing disbelief or emotional numbness over the loss
- Difficulty with positive reminiscing about the deceased
- Bitterness or anger related to the loss
- Self-blame or guilt about the death
- Excessive avoidance of reminders of the loss
Social/identity disruption
- A desire to die to be with the deceased
- Difficulty trusting other individuals since the death
- Feeling alone or detached from other individuals since the death
- Feeling that life is meaningless or empty without the deceased, or the belief that one cannot function without the deceased
- Confusion about one’s role in life (e.g. feeling a part of you died with the deceased)
- Difficulty or reluctance to pursue interests since the loss or to plan for the future
While the symptoms must persist for 6 months to meet criteria for the disorder in children, they can begin at any point after the death and may even be delayed for months or years. In children, the grief may not be expressed in words but rather in play and behavior, developmental regression, or anxiety including protest behavior at times of separation/reunification with other caregivers. Younger children are more likely to show signs of separation distress while older children may be more prone to social/identity disruption.
Risk factors for the development of a bereavement disorder include female gender, dependency on the deceased, as would be seen with loss of a caregiver, as well as poor caregiver support after the death. So, in a situation where one parent dies and the other parent is struggling to cope with that loss, the children may be at increased risk. Children with a history of a prior loss may be at even increased risk. Checking in with the remaining caregivers and encouraging them to seek their own support can be an important intervention for the pediatrician to consider and offer. Prior history of mood disorder may also be a risk factor in the development of persistent complex bereavement disorder.
Substance use disorders are among the most common co-morbidities of persistent complex bereavement disorder after MDD and PTSD. A CDC report from June 2020 suggested that 13% of Americans had started or increased substance use to cope with the pandemic. One can only imagine that the numbers have risen since then as we know that both grief and isolation are risk factors for substance use. This is a consideration of particular importance for loss from Covid-19 as so many of the community rituals we depend on to process grief were stripped away during the pandemic. Adolescents are also at risk of turning to substances to numb unprocessed pain, and screening tools such as the CRAFFT are important tools to detect misuse.
An important evolution in psychiatry has been the recognition that a depressive episode can begin in the immediate aftermath of loss. For that reason, DSM-5 eliminated the bereavement exclusion criterion for MDD. Persistent complex bereavement is distinguished from depression by its singular focus on loss and depression is more likely to be persistent day to day versus the waxing and waning nature of grief. It is important for pediatricians to screen for depression in this population and provide appropriate intervention including referral to psychotherapy and/or starting medication as appropriate. Consulting with the Project TEACH Child & Adolescent Psychiatrist to present the case for discussion is available and strongly recommended.
Project TEACH can help with a variety of behavioral health concerns for children, adolescents and young adults presented by COVID-19 and otherwise, including the identification of prolonged grief disorder and increased risk for other traumatic events:
Project TEACH can help with a variety of behavioral health concerns for children, adolescents and young adults presented by COVID-19 and otherwise, including the identification of prolonged grief disorder and increased risk for other traumatic events:
https://projectteachny.org/wp/prevention-science/
https://projectteachny.org/wp/parent-and-family/
References:
Center for Disease Control and Prevention. (2021). The Hidden U.S. COVID-19 Pandemic: Orphaned Children – More than 140,000 U.S. Children Lost a Primary or Secondary Caregiver Due to the COVID-19 Pandemic. U.S. Department of Health and Human Services. https://www.cdc.gov/media/releases/2021/p1007-covid-19-orphaned-children.html
American Psychiatric Association. (2013). Persistent Complex Bereavement Disorder. In Conditions for Further Study, in Diagnostic and statistical manual of mental disorders (5th ed.).
American Psychiatric Association. (2021). APA Offers Tips for Understanding Prolonged Grief Disorder. APA News Releases. https://www.psychiatry.org/newsroom/news-releases/apa-offers-tips-for-understanding-prolonged-grief-disorder
Center for Disease Control and Prevention. (2021). Mental Health, Substance Use, and Suicidal Ideation During the COVID-19 Pandemic — United States, June 24–30, 2020. U.S. Department of Health and Human Services. https://www.cdc.gov/mmwr/volumes/69/wr/mm6932a1.htm
Overview of Project TEACH Services
Current initiatives in Medicaid and Commercial insurance and the NYS PCMH incentive project, all create an environment that encourages pediatric practices to work toward integrating children’s behavioral healthcare into pediatric primary care. Behavioral health integration has the potential to enhance the value proposition for most practices.
Project TEACH Child and Adolescent Psychiatrists are available through the Project TEACH warm lines to provide guidance on assessment of a children’s and adolescents’ mental health symptoms and evidence-based treatment following traumatic events. You can also find the Child PTSD Symptom Scale (CPSS) on the Project TEACH website: https://projectteachny.org/rating-scales/
Project TEACH can help with a variety of behavioral health concerns presented by COVID-19, including school re-entry and self-care: https://projectteachny.org/covid/
Project TEACH direct services to pediatricians include:
- Telephone consultations with Project TEACH child and adolescent psychiatrists (“Regional Providers”)
- Face-to-face evaluations provided by the Regional Providers as needed following phone consultations
- Linkages and referrals to key community mental health resources for children and families
- A selection of CME accredited educational opportunities
- Maternal Mental Health Initiative for linkages to care and other support for maternal depression and related anxiety and mood disorders
Accessing the educational and supportive services of Project TEACH can help your practice contract for higher payments, while also supporting you and your team in providing more comprehensive higher quality care to your patients with mild-to-moderate mental health concerns.
Funded by a grant from the New York State Office of Mental Health’s Project TEACH.
New York State American Academy of Pediatrics (NYS AAP)
A Coalition of AAP NY Chapters 1, 2, & 3
Elie Ward, MSW | Dir. of Policy, Advocacy & External Relations | eward@aap.net