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Bereavement in Children

Presented by Khaliah A. Johnson, MDPediatric Palliative Care Consultant

Children’s Healthcare of Atlanta, U.S.A. Bigshoes Foundation, S.A.

August 15th, 2012

A Special Thanks to a Special Being

A Discussion

• Who are the children we should consider when we think about bereavement?

• What have been some of the challenges you have encountered in supporting bereaved children?

• What approaches have worked for you in caring for bereaved youth?

A Case

Tia* is an eight year old girl with diagnosis of acute lymphoblastic leukemia, who was just recently hospitalized when diagnosed with her third relapse.

What would you do?

What is bereavement?

• Bereavement refers to the process of losing someone or something to which we are bonded.

• Grief is the multi-faceted response to loss (may include physical, cognitive, behavioral, and philosophical dimensions).

• One’s grief through the bereavement process is influenced by resilience.

Do children grieve differently? • Children learn to adapt to a wide variety

of changes (i.e., being weaned, moving houses or schools, the death of a pet).

• How children cope with loss will depend upon their personalities and the guidance they receive from caregivers.

• Though previously thought that children do not grieve, we know that they experience loss in ways consistent with their cognitive and social development.

4 General Responses to Grief

I hurt inside

I do not understand

I am not enough

I do not belong

Infants and Toddlers“If a child is old enough to love, he is

old enough to grieve.”

• Concept of death- will not understand death but will respond to changes in his/her routine that death causes

• Grief Response- irritability, respond to emotions of adults & caretakers

• Signs of Distress- regression, changes in eating or sleeping patterns

• Possible Interventions- reestablish routine, comfort, touch, hold infant or toddler

Preschoolers (3-5 years)• Concept of death- “engage in magical

thinking”, view death as reversible or temporary

• Grief Response- may ask questions about the death over and over again, may reenact death through play

• Signs of Distress- regression, bedwetting, separation anxiety, sleep disturbances

• Possible Interventions- answer questions honestly, use appropriate language to explain death, participate in play with children, maintain a routine

School-Age Children (6-9 years)

• Concept of death- engage in “magical thinking”, associate death with old age, personify death (e.g. ghost, Bogeyman, Grim Reaper)

• Grief Response- may regress emotionally or behaviorally, aggressive behavior (especially in boys), may be curious about death and what causes death

• Signs of Distress- regression, nightmares, violent play, tries to take on the role of the person who died

• Possible Interventions- give children an opportunity to participate in memory making activities, share stories of person who died, model appropriate grief responses

Pre-Adolescents (9-12 years)

• Concept of death- understand that death is final and that it will happen to everyone including themselves, view death as punishment

• Grief Response- finality of death creates anxiety, fear the death of other people they love, want to know details of how the death happened

• Signs of Distress- regression, problems in school, withdraw from friends, extreme weight loss or gain, suicidal thoughts

• Possible Interventions- offer constructive “venting” alternatives like sports or exercise, give as much factual information regarding the death as possible

Adolescents (12 and up)• Concept of death- understand death

cognitively, struggle with spiritual beliefs surrounding death, search for meaning behind the death, understand possibility of their own death

• Grief Response- may act out, may express that “life is not fair,” may prefer to discuss feeling with their friends, may develop an “existential” response

• Signs of Distress- intense anger or guilt, poor school performance, longterm withdraw from friends, opposition/defiance

• Possible Interventions- sharing own experiences with loss, explore religious/spiritual beliefs with them

Developmentally Appropriate Language

• When talking to children ask questions to assess their level of understanding of the events.

• Identify fears and misconceptions, offer reassurance, and provide opportunities to play.

• Avoid euphemisms such as “sleeping” to explain death.

• Explain what death means medically.

• Ask what death means to them in religious terms- if they believe in an afterlife ask them what that looks like.

• Remember: you don’t have to have all the answers, practice reflective listening.

Reminders for Caregivers

• If parents do not feel like they can directly tell their child, offer to be in the room as a support to help “guide” them through the difficult conversation

• Remind parents that every child will grieve in their own way, in their own time (ie: grief bursts)

• Give child the “choice” to visit with patient and always assure them they do not have too

• PLEASE remind parents to not force the visit, or request to have the child kiss/touch the patient but offer as a suggestion (Ie: “if you want to hold your mom’s hand, you still can”)

• Remind parents that children need breaks from the room and kids grieve through their play. Normalize the importance of “a play area” during this time and frequent breaks.

• After reviewing the child’s needs, begin to explain the keepsake process and what you are able to offer...encourage parental/caregiver participation.

Keepsakes

• Hand molds & handprints– Family handprints

• Memory Box– Photos– Lock of hair– Clothes– Blanket– Drawings/Cards from loved one– Video

Taking Care of Yourself

Formulating a self-care plan or strategy is an essential part of caring for bereaved families

It is important to ask yourself:

How do you cope with your own sense of loss?

How do you “stay centered” so that you can help others?

A case Revisited

Tia* is an eight year old girl with diagnosis of acute lymphoblastic leukemia, who was just recently hospitalized when diagnosed with her third relapse.

What would you do?

Resources

• http://www.childbereavement.org.uk

• “Helping children cope with the loss of a loved one- a guide for grown-ups.” William C. Kroen, 1996.

• Archives of Pediatric and Adolescent Medicine: http://archpedi.jamanetwork.com/article.aspx?articleid=1107705

• Black D. Bereavement in Childhood. BMJ 1998; 316 (7135): 931-33.

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