BHIPP Bulletin

Volume 8, Issue 10

April 2023

This month's BHIPP Bulletin is a contribution from

Rick Ostrander, EdD, Associate Professor in the Department of Psychiatry and Behavioral Sciences at Johns Hopkins School of Medicine,

Founder of Pediatric Medical Psychology Program at Johns Hopkins Children's Center and BHIPP Consultant.

The death of a loved one is a difficult time for everyone involved. Everyone experiences grief in a different way, and there is no uniform way that a young person can be expected to react. Their reaction will depend on their own personality, the nature of their relationship with the deceased, and their developmental level. In many cases, adults want to protect the child from unpleasant emotions and might be inclined to avoid talking to the child about the death. Rather than being helpful, this approach often creates confusion and adds to a child’s misunderstanding of death and what it means. While adults cannot protect a child from the difficult emotions associated with the loss of a loved one, they are a key influence in helping children cope in the healthiest way possible. The process is further complicated when important adults in a child’s life are also grappling with their own emotions surrounding the deceased. Thus, parents and caregivers may struggle with how best to support and reassure their children while also managing their own emotions. As providers, you can offer guidance on how parents and caregivers can best address the loss of a loved one with their children.

How to Talk About the Death of a Loved One

Although there are several concerns that are important when communicating with young people about the death of a loved one, some general considerations are particularly important (Dyregrov, 2008; Kalter et. al, 2003; Kentor & Kaplow, 2020; Pearlman et. al, 2010). 

• It is important for the child to feel comfortable asking a trusted adult any questions they find important. This is best accomplished when the adult is someone close to them. Ideally, this should be a parent; however, if the parent is very distraught, the communication could be overwhelming for the child. In times like this, another close relative might be a better choice. However, it is most important that the adult has a trusting and close relationship with the young person.
• Carefully listen to the child's worries or questions. To make sure the child's concern is understood, it is often helpful to restate or clarify what they are saying. For example, clarification can be enhanced by queries such as 'Tell me more' or 'What makes you think that?'
• Children will typically ask for information when they need clarification. While it is important for the child to know that they can ask any questions, the adult’s response should be gentle, direct, and succinct. Additionally, giving information in small doses is usually most helpful.
• Using vague euphuisms like ‘gone to sleep’, ‘passed away’, or 'gone to be with granddad’ can cause confusion or fear in the child. For example, ‘gone to sleep’ could cause the child to be afraid of going to bed. Therefore, it is typically better to use the words ‘dead’ and ‘died’ while providing short explanations of these terms. In this way, the terms more concretely express the fact that their loved one is deceased. 
• Remembering the deceased is part of grieving and part of healing. This can be as simple as sharing memories of the person or bringing up the name of the person who died so that your child knows it is not taboo to talk about and remember that person. For example, conversations like, 'Grandpa always liked football; I wonder what Grandpa would be thinking about the game right now.' It is important to keep photos around as well.
• By fostering open communication with the child, the adult can help moderate unrealistic worries and misunderstandings while also offering reassurance. This can include opportunities to play, help create legacy items (e.g., artwork, a picture book, or a scrapbook), and leave the door open for ongoing talks.
• It is alright to acknowledge that adults don’t have all the answers: 'I don’t know the answer to that, but I will try my best to find out.'
• Emotional reactions to death are a normal part of the grieving process. To some extent, showing emotions can help children realize that experiencing a range of feelings is a part of the grieving process.
• Maintain normal routines as much as possible. While grief is unavoidable and disruptive, children also benefit from the security of regular routines and knowing that life goes on.  
• Be aware that the child’s level of understanding is greatly influenced by their developmental level. (See more below.) 
• When possible, allow the child to lead the discussion so they can express what they are experiencing and feeling. Adults should refrain from doing all the talking and not come into conversations with a fixed agenda.
• Sometimes sitting together and allowing an open conversation about the child's thoughts and feelings is helpful.
• One of the most important ways that a parent can help their child is to take care of their own emotional reactions; when talking to a child about the death of a loved one, the focus should be on how the child is processing the experience. Therefore, the adult should not exclusively focus on their own emotions or agenda.
• Hiding grief can make children feel like the sadness they may be feeling is bad. However, parents should try not to let children see them when they are most upset. Seeing the adults at their worst may cause the child to worry about the parent or feel insecure.
• While it is natural for grieving family members to want to understand why their loved one died, focusing on the medical details with a young person is often counterproductive.

Developmental Considerations:

The young person’s developmental level is one of the biggest influences on how a child experiences the death of someone close. Although the following section describes the experiences that could be expected given the child’s age (Alvis et. al., 2022; Kentor & Kaplow, 2020; Pearlman et. al., 2010), children with developmental delays could be expected to have a reaction that is more consistent with a child that is much younger than is reflected by their chronological age.

Infants/Toddlers:

Children at this age do not understand much about the concept of death; however, they are affected by changes in routine or the responses of caregivers. As a result, they might respond to these changes by being more moody or irritable than usual. Sometimes this takes the form of regression (or acting like they did when they were younger). To help them cope, it is important to maintain or reestablish routines and physically comfort them.

Preschoolers (ages 3-5):

Children at this age might see death as reversible or temporary. Such ‘magical thinking’ may be reflected in repeated questions related to the permanence of death, or they may incorporate death into their play. While these actions are completely normal, sometimes a child at this age may display regressive tendencies, such as bed wetting, sleep disturbances, or anxiety about being separated from caregivers. These reactions can best be addressed by answering questions concisely, directly, and honestly. In some cases, the child’s anxiety may be reflected in their play; within this context, parents can help them cope effectively and correct misperceptions.

Primary School-Aged (ages 6-9):

The magical thinking that might be evident at this age may be more concrete and take the form of unrealistic fears about their own safety, such as fears about ghosts or monsters. While regression may occur at this stage, behavioral changes are also a sign of difficulty coping. Uncharacteristic displays of aggression (particularly with boys) or increases in emotionality are typically temporary; however, protracted periods of regression, nightmares, or violent play may reflect the need for professional intervention to help moderate distress.

Pre-adolescent (ages 9-12):

Young people at this age are more likely to understand that death is final and that it is something that everyone eventually experiences. This realization may cause them anxiety about death befalling themselves or other loved ones. With their increasing cognitive sophistication, they may be more interested in the details surrounding the death. Their distress may be reflected in uncharacteristic problems in school, social withdrawal, weight disturbances, or recurrent thoughts about death. Helping the child to reorient their mood and interests can be fostered by reestablishing routines and including activities that are pleasant, such as sports or other hobbies. Open communication is also important; when possible, it is best to concisely provide information in response to their questions.

Adolescent (age 12 and up):

Young people at this age are increasingly able to cognitively understand death; however, they may struggle with the spiritual meaning behind it. Rather than rely on the adults in their lives to resolve these struggles, they are more likely to discuss their feelings with friends. While temporary expressions of distress may be reflected by acting out in an unexpected or uncharacteristic way, it is more concerning when they display strong anger or guilt, a decline in school performance, social withdrawal, or protracted defiance. For young people at this stage, it can be helpful for adults to share their own experiences with loss or explore their spiritual beliefs with the young person.

While the death of a loved one can cause emotional reactions in children, this is particularly true when a close relative is involved. The death of an elderly uncle, aunt, or grandparent can be very distressing, but this is often dependent on the relationship the child has with that relative. However, the death of a parent or sibling is almost always very distressing to a young person.

Death of a Parent:

The death of a parent is one of the most difficult events in a person’s life, no matter the age of the child. This is particularly true when the death is premature or unexpected. The reaction of the young person is often compounded because the remaining parent is likely to be very upset as well. It is expected for the surviving parent to show sadness; however, it is best if the remaining parent can share the news with their child without feeling out of control. The death should be explained using developmentally appropriate language. It is also important for the surviving parent or relative to provide reassurance that they will love and take care of them (Bylund-Grenklo et. al., 2016; Kentor & Kaplow, 2020; Stikkelbroek et. al., 2016).

In many cases, the death of a parent occurs after an extended period of illness and disability. If possible, regular one-on-one time with the ill parent can be helpful for both the parent and their child. During these times, the child could spend time quietly reading, playing games, or just talking. This can provide some good memories of how they spent their time together (Bylund-Grenklo et. al., 2016; Kentor & Kaplow, 2020; Stikkelbroek et. al., 2016).

Several factors seem to attenuate the risk of poor long-term psychosocial outcomes following parental bereavement. Effective social support, open communication, and positive parenting seem to be particularly salient buffers (Kentor & Kaplow, 2020). No matter what the child’s age, counseling is often a good idea during the time before and after the death of a parent. Seeking professional help may also be a good idea for the surviving parent(Kentor & Kaplow, 2020; Stikkelbroek et. al., 2016; Werner-Lin & Biank, 2013; Zhang et. al., 2023).

Death of a Sibling:

The death of a child is often unexpected and may result in the parents feeling devastated. This can result in them not being fully capable of providing support or help to the surviving children. Under these circumstances, bringing in additional adult caregivers, such as a grandparent, aunt, or friend, can provide further support to the siblings of the deceased child. In young children, such a loss often brings up questions from the surviving child about whether they are also in danger. It is important for the parents to reassure the surviving children that they are safe and that they will be there for them. While the parents are likely to feel the loss of a child for some time, the surviving children may go in and out of grief for many months. The need for professional help may be an important resource to help everyone in the family adapt and cope in these instances (Kentor & Kaplow, 2020; McCown & Davies, 1995; Stikkelbroek et. al., 2016; Schuelke et. al., 2021).  

Coping With the Suicide of a Loved One:

A traumatic death is particularly hard to talk about; however, when a loved one dies by suicide, it is especially challenging (Brent et. al., 2009; Kentor & Kaplow, 2020; Pearlman et. al., 2010). Under these circumstances, it can be explained that the death was caused by an illness and that the doctors tried to solve the problem but weren’t able to cure the disease. As the young person nears adolescence, the explanation should include that the loved one suffered from a psychiatric disorder, which is a disease of the brain and that sometimes results in death. Sharing more information when the young person asks can help them cope; however, sharing troubling details should be avoided. It may take a young person many years to process this type of loss, and their understanding may change with age. Helping the young person deal with the suicide of a parent or sibling may often require the help of a mental health professional.

Prolonged Grief Disorder:

Although the symptoms of grief typically begin to decrease over time, the feelings of intense grief sometimes persist. With the publication of the Diagnostic and Statistical Manual of Mental Disorders (5^th ed.; DSM-5; American Psychiatric Association, 2013), the criteria for prolonged grief disorder were identified (APA, 2022). For a diagnosis of prolonged grief disorder in children and adolescents, the loss of a loved one has to have occurred at least 6 months ago. In addition, a diagnosis requires at least 3 of the following symptoms to be present nearly every day for at least the 30 days prior to diagnosis:

• Identity disruption (such as 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 (such as anger, bitterness, or sorrow) related to the death
• Difficulty with reintegration (such as problems engaging with friends, pursuing interests, planning for the future)
• Emotional numbness (absence or marked reduction of emotional experience)
• Feeling that life is meaningless
• Intense loneliness (feeling alone or detached from others)

Among children and adolescents who have lost a loved one, approximately 5-10% will experience depression, post-traumatic stress disorder (PTSD), and/or prolonged grief disorder following bereavement (Melhem et. al., 2013). Many of the recommendations provided in this newsletter are relevant to primary care providers; however, in some cases, involvement of a mental health professional is key to resolve symptoms. There are several empirically supported therapies for children experiencing prolonged grief, with many of these interventions using cognitive behavioral therapy (Kentor & Kaplow, 2020).

As always, if you have questions about the behavioral health needs of your patients, we encourage you to call the BHIPP consultation line at 

855-MD-BHIPP (632-4477), open 9am-5pm Monday-Friday, for resource/referral networking or consultation support.

We will keep you informed about all our services and training events through our website (www.mdbhipp.org) and monthly e-newsletters. Additionally, BHIPP is on LinkedIn, Twitter, and Facebook. We invite you to follow us there to stay up-to-date on upcoming training events, pediatric mental health research, and resources for providers, families and children.

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