Background and definitions  

• Grief is the natural emotional response to loss (1). In pediatric illnesses, grief may be a response to physical loss (a patient missing her own bedroom while admitted to the hospital), a relational loss (separation from peer friendships due to extended hospitalizations), and loss of meaning (ambitions, dreams, or hopes for the future are compromised by a life-limiting illness). For children and families, grief often begins at the time of diagnosis and fluctuates through the disease trajectory.
• Anticipatory grief occurs prior to the death or loss, it may even start at diagnosis disclosure (1).
• Bereavement is the state of loss involving the death of a loved one.
• Mourning denotes the culturally influenced ways of expressing grief through customs or rituals, such as memorial services or dress codes, e.g., wearing black (1).

Culturally informed care in pediatric grief recognizes that grief in children will be expressed in diverse ways across traditions, faith systems, and cultures. Typical grief reactions, both prior to and following a loss, may include waves of denial, emotional numbness, anxiety, anger, and sadness. Grief reactions may impact physical, spiritual, psychological, cognitive, and behavioral domains. Expressions and timing of grief vary based on previous losses, individual communication styles, personality, culture, and family tradition, as well as stage of childhood development. Guidance therefore must be personalized.

Caregiver grief:  Because of the unique caregiving role and expectations related to being a parent or guardian, the death of a child is one of the most intense emotional challenges (2). Bereaved parents/guardians often describe feeling as if they have lost a part of themselves and a connection to the future. Guilt and a search for meaning as a part of their grief are common (2). It is important to recognize that most continue to yearn for their child for the rest of their lives. Special occasions (anniversary of the child’s diagnosis, death, the child’s birthday, or holidays) can trigger even more intense grief reactions. How families cope with these occasions varies; some preserve traditions, while others try new ways of marking these occasions as they adapt to the loss.

Dual process model of coping: Contemporary theories of adjustment to loss include the dual process model of coping, which posits that adaptation to loss involves oscillation between confrontation of the loss/processing of related emotions and reengaging in life without the deceased physically present (3,4). Rather than “getting over” or recovering from loss, loved one’s cope by learning to co-exist with their grief (5,6). Continued bonds to the deceased in most instances are viewed as adaptive and are particularly important for adjustment (1,3,4). Relationships with family, community, and hospital staff; purposeful meaning-making; and mental health support have been noted as protective in grief adaptation (7).

Clinical assessment & approach:  While the approach to bereavement support for parents and guardians varies across settings (8), parents/guardians nearly always report appreciation when they feel that their child was not forgotten by the clinical team (9). Standardized and personalized bereavement outreach is considered standard of care in pediatric settings (10). Based on family preference and program feasibility, bereavement outreach could take the form of a condolence phone call, card, or an in-person presence (11). See Fast Fact #443.  When providing bereavement support to the guardian or family member of child who recently died, consider the following care pearls: 

• Risk factors for mental health challenges in bereavement include low levels of social support, social isolation, anxious and avoidant attachment styles, a history of separation anxiety, and high levels of dependency on the deceased (1). Closer bereavement monitoring may be needed.
• Prolonged or “complicated” grief disorder is generally only diagnosed 12+ months from the loss. It involves frequent, persistent yearning for the deceased as well as other symptoms characteristic of acute grief that persists for 12 months or longer (12-14). Consider a mental health referral.
• Research tools to assess prolonged grief symptoms include the Inventory of Complicated Grief (ICG) and the PG-13 (15,12). The PG-13-R, reflecting the diagnostic criteria recently established in the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition, was recently validated (14). In clinical practice, the Brief Grief Questionnaire (BGQ) is commonly used as it is only, a 5-item self-report or interview instrument.
• Evaluate for signs of personal neglect, an inability to function, or self-destructive behavior; all warrant a mental health specialist referral (16).
• Screen for suicidality (12), when working with bereaved parents/guardians/siblings.
• Even when family members seem to be functioning well, offering mental health referrals can help (4).

Teaching points: Parents, guardians, and/or siblings benefit from interdisciplinary psychosocial grief support from the time of diagnosis through the disease trajectory and after the death of a child (10). Guardians/family members should not be expected to “get over” the death of a child nor rushed into “moving on.” Ongoing patience, clinical monitoring, and support is needed.

References 

1. Lichtenthal W, Kissane D, Prigerson H: Bereavement: Theory, clinical presentation, and intervention in the setting of cancer care, in Holland J, Breitbart W, Butow P, et al (eds): Psycho-Oncology, 3rd Edition (ed 3rd). New York, NY, Oxford University Press, 2015, pp 585-594.
2. Arnold J, Gemma PB, Cushman LF: Exploring parental grief: Combining quantitative and qualitative measures. Archives of Psychiatric Nursing 19:245-255, 2005.
3. Stroebe M, Hansson R, Stroebe W, et al: Handbook of Bereavement Research: Consequences, Coping, and Care. Washington, APA Books, 2001.
4. Worden JW: Grief counseling and grief therapy: a handbook for the mental health practitioner (ed 4th). New York, Springer Pub., 2008. 
5. Snaman J, Morris SE, Rosenberg AR, et al: Reconsidering early parental grief following the death of a child from cancer: a new framework for future research and bereavement support. Support Care Cancer 28:4131-4139, 2020.
6. Lichtenthal WG, Breitbart W: The central role of meaning in adjustment to the loss of a child to cancer: implications for the development of meaning-centered grief therapy. Curr Opin Support Palliat Care 9:46-51, 2015.
7. October T, Dryden-Palmer K, Copnell B, et al: Caring for Parents After the Death of a Child. Pediatr Crit Care Med 19:S61-S68, 2018.
8. Wiener L, Rosenberg AR, Lichtenthal WG, et al: Personalized and yet standardized: An informed approach to the integration of bereavement care in pediatric oncology settings. Palliat Support Care:1-6, 2018.
9. Snaman JM, Kaye EC, Torres C, et al: Helping parents live with the hole in their heart: The role of health care providers and institutions in the bereaved parents’ grief journeys. Cancer 122:2757-65, 2016.
10. Lichtenthal WG, Sweeney CR, Roberts KE, et al: Bereavement Follow-Up After the Death of a Child as a Standard of Care in Pediatric Oncology. Pediatr Blood Cancer 62 Suppl 5:S834-69, 2015.
11. Weaver MS, Lichtenthal WG, Larson K, et al: How I approach expressing condolences and longitudinal remembering to a family after the death of a child. Pediatr Blood Cancer 66:e27489, 2019.
12. Prigerson HG, Horowitz MJ, Jacobs SC, et al: Prolonged grief disorder: Psychometric validation of criteria proposed for DSM-V and ICD-11. PLoS Med 6:e1000121, 2009.
13. Ito M, Nakajima S, Fujisawa D, et al: Brief measure for screening complicated grief: reliability and discriminant validity. PLoS One 7:e31209, 2012.
14. Prigerson HG, Boelen PA, Xu J, et al: Validation of the new DSM-5-TR criteria for prolonged grief disorder and the PG-13-Revised (PG-13-R) scale. World Psychiatry 20:96-106, 2021.
15. Prigerson HG, Maciejewski PK, Reynolds CF, 3rd, et al: Inventory of Complicated Grief: A scale to measure maladaptive symptoms of loss. Psychiatry Research 59:65-79, 1995.
16. Geis HK, Whittlesey SW, McDonald NB, et al: Bereavement and loss in childhood. Child Adolesc Psychiatr Clin N Am 7:73-85, viii, 1998.

**Connotes Pediatric Palliative Care Topic #11 – Grief and Bereavement, introductory subtopic article
Conflicts of Interest: None to report.
Version History: Originally edited by Julie SW Childers MD; first electronically published in January 2025.
Author Affiliations: MW – University of Nebraska, Omaha, NE and the VA National Center for Ethics in Health Care, Washington, DC; LW – National Cancer Institute, Bethesda, MD.