Researchers from The University of Texas Health Science Center at Houston (UTHealth) and The University of California, Los Angeles (UCLA) have jointly published the first test to assess Persistent Complex Bereavement Disorder (PCBD).
PCBD has been included as a proposed diagnosis for further study in the most recent edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), which is published by the American Psychiatric Association. The new assessment tool, called the PCBD Checklist for Youth, was developed for children who are having difficulty coping with a death.
“PCBD has never been studied in its entirety. By including it in the appendix, the DSM-5 is inviting us to conduct rigorous research examining this proposed maladaptive form of grieving,” said Dr. Christopher Layne, first author, a research psychologist in the UCLA Department of Psychiatry and Behavioral Sciences, and director of Education in Evidence-Based Practice at the UCLA/Duke National Center for Child Traumatic Stress. “The PCBD Checklist for Youth is the first instrument ever developed for the specific purpose of assessing PCBD in bereaved children and adolescents.”
The second author of the checklist is Dr. Julie Kaplow, associate professor in the Department of Psychiatry and Behavioral Sciences at UTHealth Medical School and director of UTHealth’s Trauma and Grief Center for Youth. Third author is Dr. Robert Pynoos, professor of psychiatry in the UCLA Department of Psychiatry and Biobehavioral Sciences and co-director of the UCLA-Duke University National Center for Child Traumatic Stress.
The DSM-5 proposes criteria for what could become a recognized disorder that arises following the death of a loved one. To meet criteria for the diagnosis, symptoms need to be present for 12 months for adults, or six months for children. Symptoms are classified into two groups. Reactive distress symptoms include marked difficulty accepting the death, emotional numbness, bitterness or anger, or excessive avoidance of reminders of the loss. Social/identity disruption symptoms include a desire to die in order to be with the deceased, difficulty trusting others, feeling alone or detached from other individuals, feeling that life is empty or meaningless, having a diminished sense of identity, or having difficulty or reluctance to pursue previous interests.
Although further research is needed, PCBD is thought to frequently co-exist with other disorders, including major depression, post-traumatic stress disorder (PTSD), and substance use disorders. PCBD also may be associated with an increased risk of developing a major medical condition including cardiac disease, hypertension, cancer, immune disorders, and reduced quality of life.
“Maladaptive grief reactions, including those contained within the PCBD diagnosis, appear to be distinguishable from other psychiatric disorders in that they may arise from different individual or environmental risk factors and may follow a different clinical course. That’s why we believe PCBD requires different assessment tools compared to other co-existing disorders such as PTSD and depression, and requires specific grief-informed treatment,” Kaplow said. “We also know that bereaved children can display ‘adaptive grief’ reactions as well. Having a developmentally appropriate checklist to assess PCBD symptoms is a critical first step in accurately identifying bereaved youth who may need grief-informed treatment and in monitoring their progress during the course of treatment.”
Layne noted that some grief assessment tools currently being used to assess grief in children were originally developed primarily with elderly bereaved widows.
To address the pediatric differences,, Layne, Kaplow and Pynoos worked intensively for more than three years, using interview and assessment data from more than 230 bereaved children, to ensure that each item in the PCBD Checklist uses language that children can understand and captures children’s grief reactions “in their own words.”
Grief-focused intervention provided by the UTHealth Trauma and Grief Center for Youth uses the PCBD Checklist and other assessment tools to develop a detailed profile of each child. The treatment plan is then individually tailored according to each child’s specific needs, strengths, and life circumstances. Treatment components often include helping children to identify personal loss reminders, develop coping skills to manage grief reactions, construct loss narratives, and find comforting ways to feel connected to the deceased while accepting the reality of the loss.
The work of flexibly tailoring treatment is guided by multidimensional grief theory, which Layne, Kaplow, and Pynoos have been developing for the past five years.
“We have found that the key to building healing loss narratives and effective coping skills is to help each child address each of the different dimensions of grief that are a significant source of distress. The specific profile of these grief dimensions may be unique for each child and may include intense separation distress such as missing the person, identity-related distress such as feeling lost without the person, and circumstance-related distress such as being preoccupied with distressing thoughts about how the person died,” Kaplow said. “Doing this work helps children to put words to their thoughts or feelings that they often have not been able to express before and to make sense and meaning of the death.”
-Deborah Mann Lake, Office of Public Affairs