Each year, research estimates millions of Americans face long-term psychological, spiritual, social, and often physical and occupational hardships following the loss of a child (data taken from stillbirth to age 54). These hardships can pervade every aspect of life, creating formidable, and, in many cases, insurmountable, challenges for parents, families, and caregivers. Losing a child transcends race, geography, religion, and marital and socioeconomic status. Contrary to popular understanding, the older the child, the more devastating the impact may be on a family. 

According to the Institute of Medicine, losing a child is one of the greatest and most enduring stresses a person can experience. Parents are likely to suffer from health, social, and economic challenges for, on average, 18 years following the death of a child (funding for this study ended at year 18). Scientific evidence indicates that bereaved parents are more likely to suffer more depressive symptoms, poorer well-being, less purpose in life, more health complications, marital disruption, psychiatric hospitalization, and even premature death for both mothers and fathers as early as age 40.

A recent New England Journal of Medicine review articulated the clinical symptomatology for newly bereaved to include: “dysphoria, anxiety, depression, and anger, may be associated with physiological changes such as an increased heart rate or blood pressure, increased cortisol levels, sleep disturbance, and changes in the immune system.” In addition, “the early bereavement period has been associated with increased risks of health problems such as myocardial infarction, Takotsubo (stress) cardiomyopathy, or both. The death of a loved one is also associated with an increased risk of the development of mood, anxiety, and substance use disorders.” For some bereaved parents, the effects of grief can extend even further.

Beyond normative grief responses, some grief is extended and profound; this is more commonly known as complicated or prolonged grief. While it is relatively rare across the world, with a prevalence of 2-3 percent of all forms of grief, the rates of complicated grief for bereaved parents measured 30 percent. Prevalence of complicated grief among African American homicide survivors has been measured at 55 percent and survivors of suicide at 70 percent. Conversely, there are no universal clinical guidelines exist to treat deep grief; experts even disagree on a unified vocabulary, thus hampering treatment advances, the promulgation of curriculum, and insurance coverage for qualified practitioners.

The long-term economic ramifications of losing a child, from increased medical expenditures, loss of wages or employment, loss of productivity (e.g., presenteeism and absenteeism), and reduced future income, are just beginning to be investigated. Common public policy protections, such as the Family and Medical Leave Act, do not consider child loss as a qualifying event for job protection, and 63 percent of employers allow only three days of paid leave.

Like many public health concerns, there is an unequal toll and burden on our nation’s minority families. According to CDC’s mortality rates, black populations experience higher child death incidence rates for every age bracket (stillbirth to age 54) when compared to whites, as do American Indian and Alaskan Native populations from ages 15 to 54. Gun violence, for example, disproportionately affects communities of color. According to the CDC, homicide ranks in the top five causes of death from black males from ages 1 to 44. These communities are experiencing increased prevalence of grief; are placed at increased risk of the associated health, social, and economic implications; and have few community support systems.

Parents are not alone; sibling loss, at any age, is poorly understood. Evidence in adolescent bereavement states “the effects of bereavement are severe, and unresolved bereavement has been linked to agitated depression, chronic illness, enduring and intense clinical reactions, such as guilt, and significant disturbances in self-esteem, job and school performance, and interpersonal relationships.” Despite the evidence, sibling death is not considered a risk factor in the Adverse Child Experiences risk assessment. Given the hardships that parents experience, it is conceivable that surviving children or adolescents may not have a parent who has the ability to buffer them from life’s hardships or the resources to help them cope.

Given the preponderance of evidence, grief itself may be a silent, underlying risk factor for health and chronic conditions, family solvency, and economic stability. Yet, despite its significance, no comprehensive review of child loss literature has been conducted, no national data has been collected to estimate prevalence or incidence of survivorship, no universal clinical guidelines exist to treat those suffering from deep grief, and there is no accrediting body or treatment standard for grief therapists.  A sound research framework needs to be developed to offer community outreach and engagement strategies, ensure science-based program designs and implementation, provide culturally sensitive materials, and understand the impact on our nation's workforce. Overall, more can be done to understand bereaved families and the impact their loss and subsequent hardships have on our nation.

To address this broad range of unmet needs, EVERMORE is dedicated to building a safety net for parents and families who have lost children, regardless of age or cause of death.