Lighting the way for children with medical complexity
This PPCC Toolkit has been developed to specifically address the needs and concerns of children and teens who have experienced the death of their sibling with medical complexities. PPCC is proud to offer information about what siblings might feel and experience, activities that allow for expression of emotions and legacy creation, and additional resources to encourage and guide conversations to aid in comfort, healing, and growth.
>> Return to Sibling ToolkitChildren start to understand the concept of death around the age of eight or nine by becoming aware that death is final (Boyd Webb, 2011; Stanford Children’s Health, 2022). Children also experience different grief reactions based on their developmental level (versus their actual age), their understanding of death, and the relationship that child had with their loved one (Boyd Webb, 2011; Roche et al., 2016).
This section lists various grief reactions that children can experience. Some additional reactions to sibling loss are also included, since children can have difficulty identifying and processing more complex feelings.
It is important to be aware that children may experience various responses related to the death of a loved one. These grief reactions can include the following:
(Brooten & Youngblut, 2017; New Zealand Paediatric Palliative Care Clinical Network, 2021; Youngblut & Brooten, 2021)
Additional reactions in relation to a sibling’s death can include the following:
(Brooten & Youngblut, 2017; New Zealand Paediatric Palliative Care Clinical Network, 2021; Youngblut & Brooten, 2021)
The death of a sibling can feel like losing a role model, confidant, or playmate. Some descriptions given by children and parents show the array of reactions to sibling death.
Siblings described how they:
Parents reported that children responded to sibling death with:
(Brooten & Youngblut, 2017; Youngblut & Brooten, 2021)
Parents’ perspectives can differ from those of their children regarding how they cope with death. Research has focused more on parents’ views which has shown that they report their children to be coping healthier than children do themselves (Roche et al., 2016). These opposing outlooks show that children may not initially portray all the emotions they experience following a sibling’s death because of their awareness of their parents’ grief or limited understanding of their own feelings. Therefore, listening to and helping children understand their emotions can benefit their grieving process (Roche et al., 2016).
This section lists the various emotions that children can experience after the death of a loved one. It is important to be able to recognize these different emotions in response to the death of a sibling as children’s feelings can change over time due to their better understanding of death and personal grief.
Emotions related to sibling loss can differ for every child. Various reactions can be seen or expressed at different developmental milestones. Some of these feelings can include:
(Akard et al., 2019; Roche et al., 2016)
Sibling loss can affect children in unique ways because of the bond and relationship they share. Grief has a lasting effect on families and impacts every individual differently.
Children have reported various changes in both physical and behavioral factors over time after the death of a sibling. Research has found that girls may experience more internalizing depressive behaviors (e.g., anxiety, depression, and withdrawn behaviors) whereas boys may show more externalizing behaviors (e.g., aggression, hyperactivity, and trouble concentrating) after the death of a sibling.
*(It is important to note that all children can exhibit any of these behaviors.)
(Akard et al., 2019; Brooten & Youngblut, 2017; Roche et al., 2016; Roche et al., 2020)
When the death of a sibling occurs, children may grieve in private as to not upset others grieving the loss, thus making their grief complicated and difficult to understand (Akard et al., 2019). Research has found that expressive therapeutic activities (e.g. art, music, and play) can help adults understand children’s grief by further examining how grieving children may not be able to use words to express how they are feeling. Therefore, using both verbal and non-verbal therapeutic activities can help children express and understand their grief in creative and engaging ways (Stutey et al., 2016).
This section introduces five therapeutic activities that families can do together after children experience the death of a sibling. These activities are intended to benefit children’s grief processing and coping after the death of a sibling.
Written by Joanna Rowland and illustrated by Thea Baker. This book describes the experience of remembering and grieving a loved one. In addition, this book will discuss the importance of a memory box and how it can help with the grieving process. A parent guide about navigating children’s emotions and making a memory box is included in the back of the book.
Written by Marvin Johnson and illustrated by Paris Sieff. This is a simple and easy-to-understand book for children about feelings that can be experienced after the death of a sibling. The focus is on children who have experienced the death of a baby sibling.
Written by Erica Goldblatt Hyatt and Kenneth Doka. This book is by a psychotherapist who provides a compassionate guide for adolescents to discover their coping styles and process emotions and grief after the death of a loved one. This book focuses on healthy and meaningful ways to process one’s grief.
Bestselling picture book phenomenon about the unbreakable connections between loved ones has healed a generation of readers—children and adults alike—and has been updated with new illustrations and an afterword from the author. Also available: Spanish edition (El hilo invisible) and a companion workbook.
Written by Tiffany and illustrated by Erwin Madrid. This book is a poignant tale of love, loss, and letting go that will serve as a comforting guide to children who are navigating the complicated emotions of grief.
Written by Jo Witek and illustrated by Christine Roussey. Happiness, sadness, bravery, anger, shyness . . . our hearts can feel so many feelings! Some make us feel as light as a balloon, others as heavy as an elephant. In My Heart explores a full range of emotions, describing how they feel physically, inside, with language that is lyrical but also direct to empower readers to practice articulating and identifying their own emotions.
Produced by Sesame Street. This kit features a parents’ guide, children’s story book, and a DVD featuring Elmo’s Uncle Jack.
Written by Ellen Yeomans and illustrated by Dee Derosa. This is a story about a little girl who searches for understanding after the death of her older sister. This books focuses on the emotions that can be experienced after the death of a loved one and the journey to find one’s way to healing. (Ages 2-4)
Written by Tony Johnston and illustrated by Barry Moser. This is a story about a boy who finds out one summer that his younger brother is dying. This story shares the experience of that summer – “a season of family, of life, and of love”. (Ages 6-9)
Organizations:
The Compassionate Friends
This organization provides support for families after the death of a child. The Compassionate Friends website has sibling bereavement information that can be found on their website through searching the keyword “sibling or siblings”.
Courageous Parents Network
Courageous Parents Network is a non-profit organization and educational platform that orients, empowers and accompanies families and providers caring for children with serious illness.
The Dougy Center
This is a national grief center that provides grief support for children, teens, and families after the death of a loved one. The website linked below provides various resources for children and parents who experience grief.
Funeral Service Foundation
• When a Child Dies: Planning Acts of Love and Legacy
The Funeral Service Foundation funded this guide and created it in partnership with the Collaborative of Pediatric Palliative Care Coalitions and dozens of bereaved parents, and healthcare and bereavement professionals. Copies can be ordered free of charge.
• Youth & Funerals
Conveying the important role funerals and memorialization play in the lives of both adults and children, and dispelling common myths that prevent children from attending or participating in funerals can be challenging.
The Highmark Caring Place
The Highmark Caring Place is a center for grieving children, adolescents, and families. This organization offers various resources to grieving families throughout the community. Explore the link below for resources and events.
National Alliance for Children’s Grief (NAGC)
This organization provides grief support and resources for children’s grief.
• Grief Resource Support Library
• NAGC Holiday Toolkit – Supporting Grieving Children During the season of Family
Our House Grief Support Center
This organization provides grief support to families and the community through education, resources, and support services.
Sesame Street in Communities
Sesame Street in Communities partners with local organizations that provide tools and resources for various topics that can help children and families. The link below includes grief tools and resources for families.
Articles:
After a Loved One Dies: How Children Grieve
This is a resource for parents and other adults to read about supporting grieving children. This guide discusses various factors about the child and their grieving process as well as how to help them.
Bereavement - NHPCO Pediatric E-Journal
This resource contains an extensive collection of articles addressing bereavement in pediatric palliative/hospice care.
Bereavement Reactions Of Children & Young People By Age Group
Discusses the types of reactions that can be observed in children at different developmental levels.
Helping Your School-Age Child Cope With Death
Discusses various topics, such as, the understanding of death, what to say to your child, questions children may ask, reactions to death, and ways to help your child.
How Children Understand Death & What You Should Say
Discusses the understanding children have about death, how they can be affected, and tips on how to help them.
Sibling Death and Traumatic Grief: Introduction to Childhood Grief Information for Families
Discusses a variety of topics for sibling grief and provides additional book options and sources.
Supporting Your Child: After the Death of a Family Member or Friend
This is a resource for parents that reviews the emotions parents have, how to support children and their grief, and the effect of death on children.
What is Anticipatory Grief?
This discusses the definition and effects of anticipatory grief and how parents can understand their feelings about this.
A special thank you to Allison Fuson, MS, University of Pittsburgh, who created this Toolkit as her Capstone Project for the completion of the Master of Science in Applied Developmental Psychology.
Akard, T. F., Skeens, M. A., Fortney, C. A., Dietrich, M. S., Gilmer, M. J., Vannatta, K., Barrera, M., Davies, B., Wray, S., & Gerhardt, C. A. (2019). Changes in siblings over time after the death of a brother or sister from cancer. Cancer Nursing, 42(1), E20–E27. https://doi.org/10.1097/ncc.0000000000000573
Boyd Webb, N. (2011). Play therapy for bereaved children: Adapting strategies to community, school, and home settings. School Psychology International, 32(2), 132–143. https://doi.org/10.1177/0143034311400832
Brooten, D., & Youngblut, J. M. (2017). School aged children’s experiences 7 and 13 months following a sibling’s death. Journal of Child and Family Studies, 26(4), 1112–1123. https://doi.org/10.1007/s10826-016-0647-7
New Zealand Paediatric Palliative Care Clinical Network. (2021). Bereavement reactions of children & young people by age group. https://www.kidshealth.org.nz/bereavement-reactions-children-young-people-age-group
Roche, R. M., Brooten, D., & Youngblut, J. M. (2016). Parent & child perceptions of child health after sibling death. International Journal of Nursing & Clinical Practice, 3(185), 2–7. https://doi.org/10.15344/2394-4978/2016/185
Roche, R., Youngblut, J. M., & Brooten, D. A. (2020). Parent and child perceptions of the child’s health at 2, 4, 6, and 13 months after sibling intensive care or emergency department death. Journal of the American Association of Nurse Practitioners, 33(10), 793–801. https://doi.org/10.1097/jxx.0000000000000429
Stanford Children’s Health. (2022). A child’s concept of death.
https://www.stanfordchildrens.org/en/topic/default?id=a-childs-concept-of-death-90-P03044
Stutey, D. M., Helm, H. M., LoSasso, H., & Kreider, H. D. (2016). Play therapy and photo-elicitation: A narrative examination of children’s grief. International Journal of Play Therapy, 25(3), 154–165. https://doi.org/10.1037/a0039956
The National Children Traumatic Stress Network. (2009). Sibling death and childhood traumatic grief: Information for families. http://centerforchildwelfare.org/kb/TraumaInformedCare/Sibling_Loss_Final.pdf
Youngblut, J. M., & Brooten, D. (2021). What children wished they had/had not done and their coping in the first thirteen months after their sibling’s neonatal/pediatric intensive care unit/emergency department death. Journal of Palliative Medicine, 24(2), 226–232. https://doi.org/10.1089/jpm.2019.0538
PPCC is not a health care provider and does not give medical advice or treatment. PPCC does not endorse or recommend any listed facilities, service providers, or support groups herein. PPCC offers the list and information as a resource only. PPCC does not pre-evaluate, or consider the Medicare/Medicaid status of the providers.
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