Data Collection and Research

1. The Centers for Disease Control and Prevention and the Social Security Administration should partner with state associations to collect bereavement data on grieving and bereaved individuals.

To date, there is no national system that collects annualized data for the many dimensions of bereavement, such as demographics (e.g., trends by race and geography), cause of death, and family kinship. As a result, bereavement as a public health and social concern remains invisible, although it is ubiquitous and carries the potential for significant medical, behavioral, and economic hardship.

Using annualized data, experts can extrapolate bereavement risk factors and identify trends, hot spots, persistent vulnerabilities, and susceptible populations as well as examine the interrelationships between death and its associated outcomes among survivors.

Without epidemiological data, the nation misses an opportunity to surveil, monitor, and learn from our national epidemics and mount an effective response. To facilitate and inform future policy making and national investments, as well as develop an evidenced-based bereavement care response system, the CDC should partner with the Social Security Administration and state jurisdictions to collect bereavement data pertaining to all bereaved individuals.

2. Congress should direct the National Institutes of Health to establish a National Center of Excellence in Bereavement Care.

Bereavement is a multidimensional problem requiring a multidimensional solution. Limited investments in understanding bereavement have been made, but no coordinated research agenda has been developed to address our most pressing priorities. In the $45 billion annual budget of the National Institutes of Health (NIH), bereavement is not ranked among the top 309 research areas. One possible reason for the lack of federal investment is that no national data source provides accurate estimates of how far-reaching familial bereavement is and whether certain subgroups are particularly vulnerable to losses. Instead, bereavement is often viewed as a mental health challenge or a temporary distressing condition. Indeed, grief itself is an individual and iterative process, but bereavement’s exogenous shock irrevocably alters lifelong health development pathways as well as the social and economic aspects of individual lives. Given the ubiquity of bereavement and the significant poor outcomes bereaved individuals face, the NIH should establish a National Center of Excellence in Bereavement Care, which would translate research into applied science and establish a national research agenda, outlining common goals, objectives, and priorities. It would also coordinate investments aimed at achieving the most positive outcomes.

3. The Centers for Disease Control and Prevention should expand the definitions of adverse childhood experiences (ACEs) and social determinants of health (SDOH) to include bereavement.

Bereaved children are more likely to suffer from psychiatric disorders, behavior problems, low self-esteem, difficulty sleeping, and problems in school than their nonbereaved counterparts. Longitudinal studies have found that children who experience the death of a parent are at heightened risk for depression and post-traumatic stress disorder; the risk is particularly high during the first two years after the death. Bereaved children are also at risk of functional impairment, or the inability to carry out certain day-to-day activities. Researchers theorize that functional impairment results from a combination of preexisting vulnerabilities, loss of family resources, and the development of maladaptive coping styles.

The emotional, mental, and physical effects stemming from the death of a loved one can have serious and long-lasting consequences, including an increased risk of involvement with the justice system. Despite the evidence, the CDC does not consider bereavement to be an ACE unless the child is related to or close to someone who has completed or attempted suicide. Given the large-scale mortality crisis throughout the United States, children are exposed to death and bereavement far beyond suicide, and the scientific evidence is clear that bereavement is a demonstrated hardship that can follow a child for a lifetime.

Further, bereavement affects each of the CDC’s five domains of SDOH—including economic stability, education access and quality, health care access and quality, neighborhood and built environment, and social and community context—and disproportionately affects people of color. Black Americans are more likely to experience the death of children, spouses, siblings, and parents than White Americans are. They are also three times as likely as White Americans to have two or more family members die by the time they reach the age of thirty.

Black Americans are exposed to death at a younger age and more frequently than White Americans. Individuals who are exposed to death when they’re young are extremely vulnerable to negative social and health outcomes for the rest of their lives. These experiences cause cumulative disadvantages, induce high levels of stress, and deplete financial resources.