Orphanhood and caregiver death among children in the United States due to all-cause mortality 2000-2021: A Modeling Study

Abstract

Importance: Deaths of parents and grandparent caregivers linked to social and health crises threaten child wellbeing due to losses of nurturance, financial support, physical safety, family stability, and care. Little is known about the full burden of all-causes and leading cause-specific orphanhood and caregiver death beyond estimates from select causes. Objective: To estimate 2000-2021 prevalence and incidence trends of all-cause orphanhood and caregiver death among children <18, by cause, age, race/ethnicity, and state. Data Sources: National Center for Health Statistics (NCHS) birth, death, race/ethnicity, and population data to estimate fertility rates and identify causes of death; 1983-1998 ICD-9 causes-of-death harmonized to ICD-10 classifications; 1999-2021 ICD-10 causes-of-death; CDC WONDER for state-specific estimates; and American Community Survey for grandparent population estimates. Data extraction and synthesis: We extracted U.S. population-level death, birth, population size, race, and ethnicity data from NCHS and attributed to each deceased individual the average number of children left behind according to subgroup-specific fertility rates in the previous 0-17 years. We examined prevalence and incidence of orphanhood by leading causes-of-death, including COVID-19, the leading 5 causes-of-death for 1983-2021, and additional leading causes for ages 15-44. We extended these to obtain state-level outcome estimates. Main outcome measures: National incidence and prevalence of orphanhood and caregiver death from 2000-2021, with orphanhood by year, parental cause-of-death and sex, child age, race/ethnicity, and state. Results: From 2000-2021, orphanhood and custodial/co-residing grandparent caregiver loss annual incidence and prevalence trends increased 49.2% and 8.3%, respectively. By 2021, 2.9 million children (4% of all children) had experienced prevalent orphanhood and caregiver death. Populations disproportionately affected by orphanhood included 5.0% of all adolescents; 6.5%, 4.8%, and 3.9% respectively of non-Hispanic American Indian/Alaska Native, non-Hispanic Black, and non-Hispanic White children; and children in New Mexico and Southern and Eastern States. Parental death due to drug overdose during 2020-2021 surpassed COVID-19 as the leading cause of incident and prevalent orphanhood during the COVID-19 pandemic. Conclusions and Relevance: Policies, programs, and practices aimed at orphanhood prevention, identification, and linkage to services and support of nearly 3 million bereaved children are needed, foremost prioritizing rapidly increasing overdose-linked orphanhood.

Competing Interest Statement

OR reports grants from the Bill & Melinda Gates Foundation, the EPSRC, the AIDSFonds, and the NIH during the conduct of this study.

Funding Statement

This study was supported by the Oak Foundation (to LC, LS); the Moderna Charitable Foundation (to OR); the World Health Organisation (to SF); the Engineering and Physical Sciences Research Council (EPSRC) through the EPSRC Centre for Doctoral Training in Modern Statistics and Statistical Machine Learning at Imperial College London and Oxford University (EP/S023151/1 to A. Gandy); the Imperial College London President's PhD Scholarship fund to YC; Imperial College London Undergraduate Research Bursaries to LG and VKM; and London Mathematical Society Undergraduate Research Bursary to DW (URB-2023-86). The funders had no role in study design, data collection and analysis, decision to publish or preparation of the manuscript. The findings and conclusions in this report are those of the author(s) and do not necessarily represent the official position of the Centers for Disease Control and Prevention.

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I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained.

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All data used to calculate estimates of mortality and orphanhood are publicly available.

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