The nation has made substantial investments in the prevention of death - including medical facilities, pharmaceuticals, and emergency response. Yet, when the death of a child occurs, families have few supports available. EVERMORE is seeking to change the landscape for bereaved families by advancing national research priorities and identifying key research questions.
Centers for Disease Control and Prevention
Today, the Centers for Disease Control and Prevention (CDC) cannot tell Americans or decision-makers just how many parents and family members survive the death of a child. Without this critical data, policymakers, corporate leaders, philanthropists and others cannot prioritize investments; determine the most pressing research priorities; or identify which families are at greatest risk.
Recommendation One: The Centers for Disease Control and Prevention should conduct an incidence and prevalence analysis to determine how many nuclear family members survive the death of a child, at any age and from any cause, in the United States each year.
Recommendation Two: Following an analysis of prevalence and incidence, the Centers for Disease Control and Prevention should examine the interrelationships between child death, family income, health, causes of death, and community support systems in order to provide a clear understanding of the problem, enable the research community to monitor and track trends, and ultimately improve outcomes for bereaved families.
National Academies of Sciences
Considered one the nation's most prestigious scientific institutions, the National Academies of Science publishes reports on a range of important issues facing the nation. To date, the National Academies has not authored a report to the nation on the implications of child death on a family, community or nation.
This report will consolidate the current state-of-affairs for bereaved families and the science, programs, and policies that support them. Additionally, it will provide a roadmap for decision-makers and prioritize our nation's most pressing needs to address child death support systems and their architecture in our public, private, and plural institutions.
Recommendation Three: The National Academies of Science should author a report examining the burden of child loss among American parents, the unique hardships and variations among all forms of child death (at any age), the impact on the nuclear family, a community and the nation. Further, the report should examine the economic impact on employers, the nation, and consider the current clinical and policy landscape, including professional education and standards of practice. Finally, the report should examine the public's awareness, understanding and education on child death and the unique hardships facing minority communities and disparities in support.
Economic Case for Action
Each year thousands of American families face long-term psychological, spiritual, social and often physical and occupational hardships following the loss of a child. These hardships can pervade every aspect of life, creating formidable, and in many cases insurmountable, challenges for parents, families and caregivers. Yet, we know little about the economic implications of such a loss.
Some research indicates that bereaved families are more likely to earn fewer wages in the years following the death of a child. While another recent study found that 63 percent of employers only offered three days of bereavement leave in the death of a child; not enough to time to plan a funeral.
As personal wellbeing and economic security are key drivers for family solvency and stability, we should better understand questions such as: what is the toll of lost wages on a family? what are the economic costs for an employer? what are the economic ramifications on our nation's competitiveness in a global economy?
Recommendation Four: EVERMORE should partner with an economic institution or center for economic excellence to determine the economic toll the death of a child has on a family, community, employer, and our nation.
National Institutes of Health
With an annual budget exceeding $30 billion, the National Institutes of Health "seeks to enhance the health, lengthen life, and reduce illness and disability." Few dollars, if any, are invested to tailor programs and support models for families following the death of a child, at any age and from any cause.
Today, few studies document the implications and best practice support models for helping a family cope and stabilize their grief following the death of a child; this is especially true of minority communities. Support models for families who lose a child to homicide, for example, may look notably different than support systems established to support a family who has experienced a stillbirth, or death from war, or from a natural disaster and so forth.