What is Prolonged Grief Disorder?

Patient Presentation
A 10-year-old female came to clinic for her health supervision visit. She was doing well in school and her dance and swimming classes. She and her mother said she continued to be very sad about her father’s sudden death from a heart attack 9 months previously. She said that she felt happy at school and with her friends and mother and thought they were helping her, but “I just will suddenly cry and feel so sad. I just can’t stop it.” Her mother said that friend’s, family, school and work had been supporting them and she felt grateful for the support, but she too felt like this often. “Her friend’s mother has been really helpful, but she is worried about her too. Her teacher said at conferences that she thinks the patient is doing okay but notices that she still seems sad.” She and her mother denied any self-harm thoughts. Her mother also stated that she personally was also struggling with her own grief.

The review of systems showed no weight loss, with good appetite. There was improving sleep but still she had at least 2 nights/week where she would have sleep initiation or interruption issues.

The pertinent physical exam revealed normal growth parameters and vital signs. Her physical examination was normal. During the examination she talked about many things she liked to do by herself or with friends and hopes that she had for the future.

The diagnosis of a grief reaction were made. The pediatrician said, “It sounds like you are both trying to figure out what his death means for you and your future. You’ve been doing a pretty good job of surviving and I’d say some thriving too. But it sounds like you both could use some more help with processing his death so you can feel a little better. Many people struggle some and need some extra help. I have some counseling resources. Let’s talk about what might work best for you, and her and your mom too.”

Grief is the process of experiencing different emotions, expressions and action in response to the death of someone the person cares about. This is a personal and private process. Grief can occur for other significant losses such as a divorce, job, or health. People may overlook loss of routine and special activities, presumed safety, and autonomy that can also cause loss and grief. Additional traumas of these loss types have been magnified especially in the past couple of years as the world lives with Covid. Mourning is a public process of showing grief. This often involves religious beliefs and customs, and cultural customs. Bereavement is the time period of grief and mourning.

The deceased’s relationship with the survivor, the circumstances around the death or loss, previous experiences with death or loss and the supports the person has or can gather are key factors in shaping how the survivor experiences their grief. Often today people use a framework of a 5 stages approach to understanding the grieving process for adults. People may have components of these at any time and some are shorter or longer but generally people experience these stages including:

  • Denial – that the death or loss has occurred or will occur as this can happen even before the death. People may experience fear, shock, numbness, distress, and may avoid reminders of the deceased.
  • Anger – this can last for days to months and people may experience anger, frustration, loneliness, uncertainty, intense pain, agitation, and preoccupation with thoughts.
  • Bargaining – this tends to be shorter and the person is trying to find meaning in the death or loss. People may want to tell their story and as they do it, they make meaning of the death or loss for themselves.
  • Depression – this can be short or long. People feel sadness, may be overwhelmed or feel helpless as the reality of the death or loss sets in. They may withdraw or be aggressive or hostile and extreme emotions may come intermittently like waves.
  • Acceptance – this usually occurs over a few months to a year or more. The person comes to accept the death or loss. This last phase of grief happens when people find ways to come to terms with and accept the loss, adjusting to their new life without the person or other loss.

Children may not experience death or loss this same way but they do experience the death. Developmentally children will process the death or loss differently. Parents can help their children by allowing children to express their own emotions verbally, behaviorally, or creatively.
Providing consistency and being there to meet their needs not only helps the child as they are coming to terms with the new reality, but can also help parents with their own grief and loss.
Consistency of daily routine, meals, activity and sleep supports the physical and emotional healing for all. As children ask questions about what has occurred and what will happen in the future, adults can provide clear, consistent and supportive answers. Children often ask the same questions over and over and questions about death and loss are no different.
These reminders can be distressing to a grieving parent and they offer an opportunity to support the child, and as well as parents can be reasonably honest about their own feelings. For example, “Mommy is crying because I am sad that grandma has died, but I am crying because I love her so much too just like I love you. It makes me happy when you talk about her but sometimes I cry.”
Modeling emotional honesty in a way that is supportive of the child and meets the child’s needs, can also help the parent with their own grief.

“When griefs are too many, last too long, occur too close on the heels of each other, are too grievous and lacerating in nature and call a halt to too many aspects of our lives, we call this morbid or complicated grief.” People usually need additional support and help to process this type of grief. Grief that is complicated can include other mental health issues such as major depression, separation anxiety, post-traumatic stress disorder, and bereavement disorder.

Learning Point
Prolonged grief disorder (PGD) was recently added to the Diagnostic and Statistical Manual of Mental Disorders. This occurs when there are more consistent or extreme reactions to the death or loss over a prolonged period of time. It can be diagnosed after 6 months of symptoms in children and 12 months in adults. From the American Psychological Association, PGD symptoms include:

  • “Identity disruption (e.g., feeling as though part of oneself has died).
  • Marked sense of disbelief about the death.
  • Avoidance of reminders that the person is dead.
  • Intense emotional pain (e.g., anger, bitterness, sorrow) related to the death.
  • Difficulty with reintegration (e.g., problems engaging with friends, pursuing interests, planning for the future).
  • Emotional numbness.
  • Feeling that life is meaningless.
  • Intense loneliness (i.e., feeling alone or detached from others).

In the case of prolonged grief disorder, the duration of the person’s bereavement exceeds expected social, cultural or religious norms and the symptoms are not better explained by another mental disorder.”

Cognitive behavioral therapy has been shown to be effective for children and adolescents experiencing PGD due to a parental death.

Questions for Further Discussion
1. What are some behavioral expressions of grief?
2. What mental health resources are available for grief in your community?

Related Cases

To Learn More
To view pediatric review articles on this topic from the past year check PubMed.

Evidence-based medicine information on this topic can be found at SearchingPediatrics.com and the Cochrane Database of Systematic Reviews.

Information prescriptions for patients can be found at MedlinePlus for these topics: Bereavement and Child Mental Health.

To view current news articles on this topic check Google News.

To view images related to this topic check Google Images.

To view videos related to this topic check YouTube Videos.

Melhem NM, Porta G, Walker Payne M, Brent DA. Identifying prolonged grief reactions in children: dimensional and diagnostic approaches. J Am Acad Child Adolesc Psychiatry. 2013;52(6):599-607.e7. doi:10.1016/j.jaac.2013.02.015

Boelen PA, Lenferink LIM, Spuij M. CBT for Prolonged Grief in Children and Adolescents: A Randomized Clinical Trial. Am J Psychiatry. 2021;178(4):294-304. doi:10.1176/appi.ajp.2020.20050548

APA Offers Tips for Understanding Prolonged Grief Disorder. Accessed April 5, 2022. https://www.psychiatry.org/newsroom/news-releases/apa-offers-tips-for-understanding-prolonged-grief-disorder

Fitzgerald DA, Nunn K, Isaacs D. What we have learnt about trauma, loss and grief for children in response to COVID-19. Paediatr Respir Rev. 2021;39:16-21. doi:10.1016/j.prrv.2021.05.009

Grief and Bereavement. Accessed April 5, 2022. https://www.cancer.org/treatment/end-of-life-care/grief-and-loss/grieving-process.html

Donna M. D’Alessandro, MD
Professor of Pediatrics, University of Iowa