Video Abstract

Video Abstract

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OBJECTIVES:

To use a nationally representative sample to compare children in grandparent-led versus parent-led households with regard to diagnosed child health conditions, receipt of timely health care, and burden of caregiving responsibilities.

METHODS:

We used 4 years of pooled data from the National Survey of Children’s Health, representative of United States children ages 0 to 17 years, and applied bivariate analyses and logistic regressions adjusted for sociodemographic confounders to compare grandparent- and parent-led households on key measures of interest.

RESULTS:

Compared with children in parent-led households, those in grandparent-led households had increased physical health conditions (oral health problems: 18.9% vs 13.1%, P = .0006; overweight/obesity: 40.3% vs 29.7%, P = .0002); emotional, mental, and developmental health conditions (attention deficit hyperactivity disorder: 16.3% vs 8.0%; behavioral/conduct problems: 13.9% vs 6.1%; depression: 6.6% vs 3.1%; learning disability: 13.9% vs 6.2%, P < .0001 for all); and special health care needs (28.2% vs 17.8%, P < .0001). They also had decreased prevalence of health care utilization (usual source of sick care: 65.7% vs 79.5%, preventive checkups: 64.6% vs 77.1%; preventive dental visits: 73.8% vs 80.6%; specialty care: 78.6% vs 90.2%, P ≤ .0001 for all) and increased prevalence of forgone care (5.9% vs 2.8%, P = .0020). After adjustment, the associations with caregiver type remained statistically significant for all emotional, mental, and developmental conditions listed; special health care needs; usual source of sick care and preventive checkups.

CONCLUSIONS:

Grandparent caregivers may benefit from additional support to ensure that grandchildren receive timely health care services.

What’s Known on This Subject

Although previous studies examined health-related outcomes among select subpopulations of custodial grandparents and grandchildren, the majority of these studies did not use a large, nationally representative sample; no studies have explored whether children in grandparent-led households receive recommended health services.

What This Study Adds

This study uses a nationally representative survey to explore physical, developmental, and emotional conditions and health care access and utilization among children living in grandparent-led households, as well as the burdens of caring for children, as reported by custodial grandparents.

A significant number of children are being raised in grandparent-led households in the United States. The United States Census Bureau estimates that in 2020, more than 1.6 million children were living in households with 1 or 2 grandparents but neither parent present.1 Grandparents become custodians of their grandchildren predominately as a result of parents who are unable to care for their children.2 Some of the circumstances that have precluded parents from acting as the primary caregiver include incarceration, financial insecurity, and the opioid crisis.3 Grandparents may come to informally care for their grandchild or become custodians through formal mechanisms, such as child welfare placement.

Children in grandparent-led households have complex needs. In addition to the multitude of demands that accompanies caring for any child, children cared for by grandparents can carry the stress of previous experiences. One study found up to 72% of children in grandparent-led households had been exposed to 1 or more traumatic events, and a recent study using the National Survey of Child Health found children in grandparent-led households experienced more adverse childhood experiences than children in parent-led households.2,4 Furthermore, some studies have shown that children under grandparents’ care have higher rates of developmental delays and behavioral issues, which could produce added stress for the family.5 

Compounding the complex needs of grandchildren are the complex needs of grandparents. Custodial grandparents tend to be older and report poorer physical and mental health.6,8 Because of the responsibilities of caregiving, grandparents can experience isolation from their peers and report feeling inadequately supported by public systems.9 

Previous studies have examined health-related outcomes among select subpopulations of custodial grandparents and grandchildren, with a large proportion of studies focusing on international settings.10,11 However, the majority of these studies did not include data for both grandchildren and grandparents using a large, nationally representative sample. One nationally representative study investigated the prevalence of a limited set of health conditions and experiences among children; in this study, children raised in grandparent-led households were more likely to have attention deficit hyperactivity disorder (ADHD) and to have experienced adverse childhood experiences compared with children in parent-led households.2 Furthermore, no studies have explored whether children in grandparent-led households are able to secure recommended health services.

The health conditions that grandparents must contend with extend beyond ADHD, and it is also important to ensure that children receive recommended health care. Thus, this study aimed to use a nationally representative survey to explore a wide range of physical, developmental, and emotional conditions and health care access and utilization among children living in grandparent-led households, as well as the associated burdens of caring for children, as reported by grandparent caregivers. We sought to answer the following research questions: (1) What is the prevalence of various diagnosed health conditions among children in grandparent-led households compared with parent-led households? (2) What proportion of children in grandparent-led households receive timely preventive and specialty care, and how does this differ from children in parent-led households? and (3) Are grandparents disproportionately challenged by their caregiving duties compared with parent-led households?

The National Survey of Children’s Health (NSCH) is a cross-sectional survey funded and directed by the Maternal and Child Health Bureau of the United States Health Resources and Services Administration and fielded by the United States Census Bureau. The survey provides representative estimates of key indicators of child health at the state and national levels for noninstitutionalized United States children aged 0 through 17 years. The NSCH measures indicators such as the child’s physical, mental, emotional, and developmental health; health care access, utilization, and quality; and family factors that affect the child’s health. Data are collected annually from parents or other caregivers through web- or paper-based questionnaires. More information about the survey, including its design and administration, is available elsewhere.12,17 

For the current cross-sectional analysis, we combined NSCH data across 4 years (2016 to 2019) to increase the sample size. Overall, response rates ranged from 37% to 43% depending on year, and interview completion rates (or the proportion of households with children who completed a questionnaire) ranged from 70% to 80%. The analytic sample included 116 773 children ages 0 to 17 years. We applied Rapoport and colleagues’ operationalization of grandparent- versus parent-led households.2 Specifically, “grandparent-led households” were defined as households in which the caregiver respondent was a grandparent, either with no other caregiver or with another grandparent as caregiver. “Parent-led households” were defined as households in which the caregiver respondent was a biological or adoptive parent, either with no other caregiver or with another biological or adoptive parent or stepparent as caregiver. Households with other caregiver arrangements were excluded.

Caregiver respondents answered questions about whether the child currently had certain physical, emotional, mental, and developmental conditions as well as special health care needs.18 Respondents also answered questions on their experiences as a caregiver, including emotional support, family resilience, handling caregiving demands, frustration getting health care services for the child, help with care coordination, and impact of child health on employment (Supplemental Table 5). In addition, caregivers provided information about the child’s health care access and utilization, including usual source of sick care, preventive check-ups, preventive dental care, mental health treatment, specialty care, forgone care, medical expenses, and problems paying for medical expenses.

We compared grandparent-led households with parent-led households with respect to the sociodemographic characteristics of the caregiver and child, household characteristics, current health conditions of the child, caregiving experiences, and the child’s access to and utilization of health care. We estimated frequency distributions with weighted percentages and 95% confidence intervals (CIs) and tested bivariate associations between each of the measures of interest and household type using design-based Pearson χ2 tests of independence.

For the measures of children’s health status and health care access and utilization, we used logistic regressions to model outcomes of interest as a function of household type. Regressions were adjusted for potential confounders, which were selected based on observed sociodemographic differences between household types. We adjusted for the following caregiver characteristics: sex, physical health status, and mental health status. We also adjusted for the following child characteristics: sex, age category, race/ethnicity, and insurance status/type. Additionally, models were adjusted for federal poverty level, highest household education, and number of caregivers. The health care access/utilization models were further adjusted for child general health status to account for differential need for health care. Model results are shown as adjusted prevalence ratios, indicating the increased risk of a particular outcome in grandparent-led households compared with parent-led households, while holding all other covariates constant.

All analyses were weighted based on the survey’s sampling design to produce estimates that were representative of children nationally and were conducted using StataSE 15 (StataCorp, 2017; Stata Statistical Software: Release 15; College Station, TX: StataCorp LLC). The threshold for statistical significance was set at α = .05. Observations with missing or unknown data were dropped from the analysis. Sex (0.1% missing), race (0.4% missing), and ethnicity (0.6% missing) were imputed using hot-deck imputation, and household poverty (17.2%) was multiply imputed using regression methods. Six poverty implicates were used to calculate estimates with correct standard errors. More information is available elsewhere on imputation methods.19 This study was exempt from institutional review board review because it used publicly available, deidentified data.

The sample for this analysis included 3396 children from grandparent-led households and 113 377 children from parent-led households (Table 1). Among grandparent-led households, the majority of caregivers were female (Supplemental Figure 1). Compared with parent caregivers who responded to the survey, a greater proportion of grandparent caregivers were female (75.7% vs 69.2%, P < .001). The mean caregiver age was 59.9 years in grandparent-led households and 41.6 years in parent-led households, and a larger proportion of grandparent caregivers were in the older age categories (50+ years) compared with parent caregivers (P < .001). A smaller proportion of grandparent caregivers reported excellent/very good physical health (51.1% vs 69.8%, P < .001) and mental health (72.7% vs 77.9%, P = .02) compared with parent caregivers.

TABLE 1

Sociodemographic Characteristics of Caregivers and Children in Grandparent-Led and Parent-Led Households: National Survey of Children's Health, 2016-2019

Grandparent-Led Households (N = 3396)Parent-Led Households (N = 113 377)
Unweighted nWeighted Unadjusted Prevalence (%)95% Confidence IntervalUnweighted nWeighted Unadjusted Prevalence (%)95% Confidence IntervalP Value
Caregiver respondent characteristics      
Sex        
 Female 2475 75.7 72.5-78.5 77 017 69.2 68.5-69.7 <.001 
 Male 944 24.4 21.5-27.5 36 442 30.9 30.3-31.5  
Age category, y        
 <34 19 0.6 0.3-1.1 23 858 25.5 24.9-26.1 <.001 
 35-49 348 12.5 10.4-15.0 69 707 61.5 60.8-62.1  
 50-64 1989 56.2 52.3-60.0 19 092 12.1 11.7-12.5  
 65+ 1108 30.7 27.0-34.7 1250 1.0 0.9-1.1  
Physical health status       
 Excellent/very good 1849 51.1 47.2-55.0 82 307 69.8 69.2-70.5 <.001 
 Good 1092 32.4 29.0-36.0 25 503 24.0 23.4-24.6  
 Fair/poor 491 16.5 13.6-19.9 5556 6.2 5.8-6.5  
Mental health status       
 Excellent/very good 2583 72.7 69.0-76.1 88 957 77.9 77.4-78.5 .02 
 Good 695 20.5 17.8-23.4 19 703 17.6 17.1-18.2  
 Fair/poor 153 6.9 4.5-10.4 4648 4.5 4.2-4.7  
Child characteristics       
Sex        
 Male 1786 50.9 47.0-54.8 58 861 51.2 50.5-51.8 .89 
 Female 1678 49.1 45.2-53.0 55 046 48.8 48.2-49.5  
Age category, y        
 0-5 867 32.6 28.8-36.5 32 852 32.3 31.7-33.0 .07 
 6-11 1248 37.4 33.9-41.1 34 045 33.7 33.1-34.4  
 12-17 1349 30.0 26.6-33.6 47 010 34.0 33.4-34.6  
Race/ethnicity        
 Hispanic 453 20.8 17.1-25.1 12 448 24.5 23.8-25.2 <.001 
 White, non-Hispanic 1999 40.2 36.8-43.7 81 503 53.7 53.0-54.4  
 Black, non-Hispanic 549 30.0 26.3-33.9 5641 10.9 10.4-11.3  
 Multiracial or other, non-Hispanic 463 9.0 7.5-10.7 14 315 11.0 10.6-11.3  
General health status        
 Excellent/very good 2887 81.5 77.8-84.6 105 532 91.1 90.7-91.6 <.001 
 Good 467 15.3 12.4-18.8 6878 7.5 7.1-7.9  
 Fair/poor 99 3.2 2.0-5.2 1222 1.4 1.2-1.6  
Insurance status and type        
 Public only 2163 64.1 60.0-68.0 17 768 26.4 25.8-27.1 <.001 
 Private only 772 21.7 18.3-25.6 86 798 63.5 62.8-64.2  
 Private and public 207 6.6 4.5-9.4 3826 4.2 3.9-4.5  
 Not insured 233 7.6 6.1-9.6 4170 5.9 5.6-6.4  
Household characteristics        
Federal poverty level (FPL)        
 0%-99% FPL 799 31.3 27.9-35.0 10 472 17.5 16.9-18.1 <.001 
 100%-199% FPL 884 31.8 27.8-36.1 16 888 20.5 19.9-21.1  
 200%-399% FPL 1091 24.1 21.4-27.0 35 522 28.3 27.7-28.8  
 >400% FPL 690 12.9 11.1-14.9 51 025 33.8 33.2-34.3  
Highest household education        
 Less than high school 249 17.3 14.2-21.0 2270 8.4 7.9-9.0 <.001 
 High school 1166 38.6 34.7-42.6 12 367 16.9 16.4-17.5  
 Some college or associate degree 1188 27.4 24.6-30.5 24 634 21.1 20.6-21.6  
 College degree or higher 836 16.7 14.4-19.2 74 357 53.6 52.9-54.2  
Receipt of government benefits        
 Temporary Assistance for Needy Families/Welfare 452 15.7 13.1-18.8 1637 2.8 2.5-3.1 <.001 
 Food stamps/Supplemental Nutrition Assistance Program 953 37.2 33.6-40.9 9105 15.8 15.2-16.4 <.001 
 Free or reduced-cost school meals 1661 58.4 54.6-62.1 18 948 29.2 28.5-29.9 <.001 
 Women, Infants, and Children program 418 20.9 17.6-24.5 5888 11.4 10.9-12.0 <.001 
Food security        
 Always eat nutritious meals 2194 61.1 57.4-64.7 85 419 69.7 69.0-70.3 <.001 
 Always eat, not always nutritious 1016 30.9 27.6-34.5 23 639 25.0 24.4-25.6  
 Sometimes not enough to eat 186 6.9 5.2-9.3 3404 4.5 4.2-4.8  
 Often not enough to eat 29 1.0 0.6-1.7 672 0.9 0.7-1.0  
Employment status        
 1+ caregiver employed 2206 61.8 58.0-65.5 107 594 92.5 92.1-92.9 <.001 
 No caregiver employed 1205 38.2 34.5-42.0 5854 7.5 7.1-7.9  
Primary language        
 English 3323 93.5 90.7-95.6 106 036 85.5 84.9-86.1 <.001 
 Non-English 102 6.5 4.4-9.3 7225 14.5 13.9-15.2  
Number of caregivers        
 1 970 30.9 27.5-34.2 14 020 14.4 13.9-14.8 <.001 
 2 2494 69.3 65.8-72.5 99 887 85.7 85.2-86.1  
Grandparent-Led Households (N = 3396)Parent-Led Households (N = 113 377)
Unweighted nWeighted Unadjusted Prevalence (%)95% Confidence IntervalUnweighted nWeighted Unadjusted Prevalence (%)95% Confidence IntervalP Value
Caregiver respondent characteristics      
Sex        
 Female 2475 75.7 72.5-78.5 77 017 69.2 68.5-69.7 <.001 
 Male 944 24.4 21.5-27.5 36 442 30.9 30.3-31.5  
Age category, y        
 <34 19 0.6 0.3-1.1 23 858 25.5 24.9-26.1 <.001 
 35-49 348 12.5 10.4-15.0 69 707 61.5 60.8-62.1  
 50-64 1989 56.2 52.3-60.0 19 092 12.1 11.7-12.5  
 65+ 1108 30.7 27.0-34.7 1250 1.0 0.9-1.1  
Physical health status       
 Excellent/very good 1849 51.1 47.2-55.0 82 307 69.8 69.2-70.5 <.001 
 Good 1092 32.4 29.0-36.0 25 503 24.0 23.4-24.6  
 Fair/poor 491 16.5 13.6-19.9 5556 6.2 5.8-6.5  
Mental health status       
 Excellent/very good 2583 72.7 69.0-76.1 88 957 77.9 77.4-78.5 .02 
 Good 695 20.5 17.8-23.4 19 703 17.6 17.1-18.2  
 Fair/poor 153 6.9 4.5-10.4 4648 4.5 4.2-4.7  
Child characteristics       
Sex        
 Male 1786 50.9 47.0-54.8 58 861 51.2 50.5-51.8 .89 
 Female 1678 49.1 45.2-53.0 55 046 48.8 48.2-49.5  
Age category, y        
 0-5 867 32.6 28.8-36.5 32 852 32.3 31.7-33.0 .07 
 6-11 1248 37.4 33.9-41.1 34 045 33.7 33.1-34.4  
 12-17 1349 30.0 26.6-33.6 47 010 34.0 33.4-34.6  
Race/ethnicity        
 Hispanic 453 20.8 17.1-25.1 12 448 24.5 23.8-25.2 <.001 
 White, non-Hispanic 1999 40.2 36.8-43.7 81 503 53.7 53.0-54.4  
 Black, non-Hispanic 549 30.0 26.3-33.9 5641 10.9 10.4-11.3  
 Multiracial or other, non-Hispanic 463 9.0 7.5-10.7 14 315 11.0 10.6-11.3  
General health status        
 Excellent/very good 2887 81.5 77.8-84.6 105 532 91.1 90.7-91.6 <.001 
 Good 467 15.3 12.4-18.8 6878 7.5 7.1-7.9  
 Fair/poor 99 3.2 2.0-5.2 1222 1.4 1.2-1.6  
Insurance status and type        
 Public only 2163 64.1 60.0-68.0 17 768 26.4 25.8-27.1 <.001 
 Private only 772 21.7 18.3-25.6 86 798 63.5 62.8-64.2  
 Private and public 207 6.6 4.5-9.4 3826 4.2 3.9-4.5  
 Not insured 233 7.6 6.1-9.6 4170 5.9 5.6-6.4  
Household characteristics        
Federal poverty level (FPL)        
 0%-99% FPL 799 31.3 27.9-35.0 10 472 17.5 16.9-18.1 <.001 
 100%-199% FPL 884 31.8 27.8-36.1 16 888 20.5 19.9-21.1  
 200%-399% FPL 1091 24.1 21.4-27.0 35 522 28.3 27.7-28.8  
 >400% FPL 690 12.9 11.1-14.9 51 025 33.8 33.2-34.3  
Highest household education        
 Less than high school 249 17.3 14.2-21.0 2270 8.4 7.9-9.0 <.001 
 High school 1166 38.6 34.7-42.6 12 367 16.9 16.4-17.5  
 Some college or associate degree 1188 27.4 24.6-30.5 24 634 21.1 20.6-21.6  
 College degree or higher 836 16.7 14.4-19.2 74 357 53.6 52.9-54.2  
Receipt of government benefits        
 Temporary Assistance for Needy Families/Welfare 452 15.7 13.1-18.8 1637 2.8 2.5-3.1 <.001 
 Food stamps/Supplemental Nutrition Assistance Program 953 37.2 33.6-40.9 9105 15.8 15.2-16.4 <.001 
 Free or reduced-cost school meals 1661 58.4 54.6-62.1 18 948 29.2 28.5-29.9 <.001 
 Women, Infants, and Children program 418 20.9 17.6-24.5 5888 11.4 10.9-12.0 <.001 
Food security        
 Always eat nutritious meals 2194 61.1 57.4-64.7 85 419 69.7 69.0-70.3 <.001 
 Always eat, not always nutritious 1016 30.9 27.6-34.5 23 639 25.0 24.4-25.6  
 Sometimes not enough to eat 186 6.9 5.2-9.3 3404 4.5 4.2-4.8  
 Often not enough to eat 29 1.0 0.6-1.7 672 0.9 0.7-1.0  
Employment status        
 1+ caregiver employed 2206 61.8 58.0-65.5 107 594 92.5 92.1-92.9 <.001 
 No caregiver employed 1205 38.2 34.5-42.0 5854 7.5 7.1-7.9  
Primary language        
 English 3323 93.5 90.7-95.6 106 036 85.5 84.9-86.1 <.001 
 Non-English 102 6.5 4.4-9.3 7225 14.5 13.9-15.2  
Number of caregivers        
 1 970 30.9 27.5-34.2 14 020 14.4 13.9-14.8 <.001 
 2 2494 69.3 65.8-72.5 99 887 85.7 85.2-86.1  

Child sex and age did not differ by household type. The distribution of the child’s race and ethnicity differed by household type (P < .001). Specifically, a larger proportion of children in grandparent-led households were non-Hispanic Black, compared with parent-led households (30.0% vs 10.9%). Additionally, fewer children in grandparent-led compared with parent-led households were reported to be in excellent/very good health status (81.9% vs 91.9%, P < .001). In terms of insurance status, more children in grandparent-led households had public insurance (64.1% vs 26.4%), whereas more children in parent-led households had private insurance (P < .001).

A larger proportion of grandparent-led households than parent-led households had lower income levels, lower education levels, received government benefits, experienced food insufficiency, were unemployed, had English as their primary language, and had only 1 caregiver in the household (P < .001 for all).

The observed (unadjusted) prevalence of several health conditions varied according to household type (Table 2). Namely, children in grandparent-led households had higher rates of several physical health conditions including asthma (10.3% vs 7.5%, P = .002), oral health problems (18.9% vs 13.1%, P < .001), and overweight/obesity (40.3% vs 29.7%, P < .001), compared with children in parent-led households. Children in grandparent-led households also had higher rates of emotional, mental, or developmental conditions including ADHD (16.3% vs 8.0%, P < .001), behavioral/conduct problems (13.9% vs 6.1%, P < .001), depression (6.6% vs 3.1%, P < .001), developmental delays (10.7% vs 4.9%, P < .001), learning disabilities (13.9% vs 6.2%, P < .001), and speech and language disorders (8.2% vs 5.4%, P = .03). A greater proportion of children in grandparent-led households had a qualifying special health care need compared with parent-led households (P < .001).

TABLE 2

Health Status of Children and Caregiving Experiences, by Caregiver Type: National Survey of Children's Health, 2016-2019

Grandparent-Led Households (N = 3396)Parent-Led Households (N = 113 377)
Unweighted nWeighted Unadjusted Prevalence (%)95% Confidence IntervalUnweighted nWeighted Unadjusted Prevalence (%)95% Confidence IntervalP Value
Physical health conditions (current)a       
 Asthmab 394 10.3 8.5-12.5 8658 7.5 7.2-7.9 .002 
 Cardiac conditionsb 41 0.9 0.5-1.4 1533 1.2 1.1-1.3 .21 
 Oral health problemsc 549 18.9 15.4-23.0 11 825 13.1 12.7-13.6 <.001 
 Overweight/obesityd 656 40.3 34.6-46.4 15 129 29.7 28.8-30.6 <.001 
 Severe or frequent headaches 165 3.6 2.8-4.7 3571 3.2 3.0-3.5 .39 
Emotional, mental, or developmental conditions (current)a      
 Attention deficit hyperactivity disorder 606 16.3 14.0-19.0 9162 8.0 7.7-8.4 <.001 
 Anxiety 445 9.1 7.6-10.7 9254 7.6 7.3-8.0 .06 
 Autism spectrum disorder 129 3.7 2.8-5.0 2686 2.9 2.6-3.1 .09 
 Behavioral/conduct problems 519 13.9 11.9-16.2 6217 6.1 5.8-6.4 <.001 
 Depression 267 6.6 5.2-8.2 3837 3.1 2.9-3.3 <.001 
 Developmental delay 307 10.7 8.2-13.9 4742 4.9 4.6-5.2 <.001 
 Learning disability 448 13.9 11.3-17.1 6419 6.2 5.9-6.6 <.001 
 Speech/language disorder 210 8.2 5.6-11.8 4801 5.4 5.1-5.7 .03 
Special health care needsb       
 None 2248 71.8 68.2-75.1 88 824 82.2 81.7-82.6 <.001 
 Functional limitations 295 8.1 5.9-11.1 5797 4.7 4.4-4.9  
 Prescription medication only 281 6.6 5.3-8.2 8393 5.4 5.2-5.7  
 Specialized service use only 205 4.8 3.2-7.2 4087 3.1 2.9-3.3  
 Medication and service use 435 8.6 7.2-10.3 6806 4.6 4.4-4.9  
Caregiving experiencese        
Emotional support, past 12 mo        
 Yes 2544 70.4 66.4-74.0 93 263 76.3 75.7-77.0 .001 
 No 868 29.7 26.0-33.6 19 870 23.7 23.0-24.3  
Family resilience        
 High 2649 76.1 72.3-79.6 93 758 82.6 82.1-83.1 <.001 
 Medium 444 13.3 10.5-16.7 12 778 11.1 10.7-11.5  
 Low 339 10.6 8.3-13.4 6875 6.4 6.0-6.7  
Handling demands of raising a child       
 Very well 2182 68.2 64.7-71.5 72 615 64.8 64.2-65.4 .06 
 Somewhat well/not very well/not well at all 1242 31.8 28.5-35.3 40 783 35.2 34.6-35.8  
Frustrated when getting health services for child, past 12 mo      
 Always/usually/sometimes 630 19.6 16.4-23.3 17 341 16.4 15.9-17.0 .05 
 Never 2785 80.4 76.7-83.6 96 028 83.6 83.0-84.1  
Received help coordinating care (among those who needed it), past 12 mo      
 Yes 437 71.6 58.2-82.0 11 053 75.7 74.2-77.1 .49 
 No 127 28.4 18.0-41.8 3312 24.3 22.9-25.9  
Employment affected by child’s health (among employed caregivers), past 12 mo     
 Yes 82 4.2 2.8-6.3 2296 2.8 2.5-3.0 .04 
 No 2079 95.8 93.7-97.2 104 306 97.3 97.0-97.5  
Grandparent-Led Households (N = 3396)Parent-Led Households (N = 113 377)
Unweighted nWeighted Unadjusted Prevalence (%)95% Confidence IntervalUnweighted nWeighted Unadjusted Prevalence (%)95% Confidence IntervalP Value
Physical health conditions (current)a       
 Asthmab 394 10.3 8.5-12.5 8658 7.5 7.2-7.9 .002 
 Cardiac conditionsb 41 0.9 0.5-1.4 1533 1.2 1.1-1.3 .21 
 Oral health problemsc 549 18.9 15.4-23.0 11 825 13.1 12.7-13.6 <.001 
 Overweight/obesityd 656 40.3 34.6-46.4 15 129 29.7 28.8-30.6 <.001 
 Severe or frequent headaches 165 3.6 2.8-4.7 3571 3.2 3.0-3.5 .39 
Emotional, mental, or developmental conditions (current)a      
 Attention deficit hyperactivity disorder 606 16.3 14.0-19.0 9162 8.0 7.7-8.4 <.001 
 Anxiety 445 9.1 7.6-10.7 9254 7.6 7.3-8.0 .06 
 Autism spectrum disorder 129 3.7 2.8-5.0 2686 2.9 2.6-3.1 .09 
 Behavioral/conduct problems 519 13.9 11.9-16.2 6217 6.1 5.8-6.4 <.001 
 Depression 267 6.6 5.2-8.2 3837 3.1 2.9-3.3 <.001 
 Developmental delay 307 10.7 8.2-13.9 4742 4.9 4.6-5.2 <.001 
 Learning disability 448 13.9 11.3-17.1 6419 6.2 5.9-6.6 <.001 
 Speech/language disorder 210 8.2 5.6-11.8 4801 5.4 5.1-5.7 .03 
Special health care needsb       
 None 2248 71.8 68.2-75.1 88 824 82.2 81.7-82.6 <.001 
 Functional limitations 295 8.1 5.9-11.1 5797 4.7 4.4-4.9  
 Prescription medication only 281 6.6 5.3-8.2 8393 5.4 5.2-5.7  
 Specialized service use only 205 4.8 3.2-7.2 4087 3.1 2.9-3.3  
 Medication and service use 435 8.6 7.2-10.3 6806 4.6 4.4-4.9  
Caregiving experiencese        
Emotional support, past 12 mo        
 Yes 2544 70.4 66.4-74.0 93 263 76.3 75.7-77.0 .001 
 No 868 29.7 26.0-33.6 19 870 23.7 23.0-24.3  
Family resilience        
 High 2649 76.1 72.3-79.6 93 758 82.6 82.1-83.1 <.001 
 Medium 444 13.3 10.5-16.7 12 778 11.1 10.7-11.5  
 Low 339 10.6 8.3-13.4 6875 6.4 6.0-6.7  
Handling demands of raising a child       
 Very well 2182 68.2 64.7-71.5 72 615 64.8 64.2-65.4 .06 
 Somewhat well/not very well/not well at all 1242 31.8 28.5-35.3 40 783 35.2 34.6-35.8  
Frustrated when getting health services for child, past 12 mo      
 Always/usually/sometimes 630 19.6 16.4-23.3 17 341 16.4 15.9-17.0 .05 
 Never 2785 80.4 76.7-83.6 96 028 83.6 83.0-84.1  
Received help coordinating care (among those who needed it), past 12 mo      
 Yes 437 71.6 58.2-82.0 11 053 75.7 74.2-77.1 .49 
 No 127 28.4 18.0-41.8 3312 24.3 22.9-25.9  
Employment affected by child’s health (among employed caregivers), past 12 mo     
 Yes 82 4.2 2.8-6.3 2296 2.8 2.5-3.0 .04 
 No 2079 95.8 93.7-97.2 104 306 97.3 97.0-97.5  
a

Among 3 to 17 year olds, based on a diagnosis by a doctor or other health care provider, except where noted otherwise.

b

Among 0 to 17 years olds.

c

Among 1 to 17 year olds. Based on caregiver reports of frequent or chronic problems with cavities, toothaches, or bleeding gums.

d

Among 10 to 17 years olds. Based on body mass index, which was calculated based on caregiver reports of child height and weight.

e

See supplemental Table 5 for more details about the survey items used for the caregiving experience measures.

For caregivers’ experiences, grandparents reported lower rates of feeling emotionally supported (70.4% vs 76.3%, P = .001) and experiencing high family resilience (76.1% vs 82.6%, P < .001), compared with parents (Table 2). Among employed caregivers, a greater proportion of grandparents than parents reported that the child’s health affected their employment (4.2% vs 2.8%, P = .04). However, there were no differences between grandparents and parents with respect to reports of handling the demands of raising a child, frustration in getting health care services for the child, and receiving care coordination help when needed.

The observed prevalences for children’s health care access and utilization also differed by household type (Table 3). Children in grandparent-led households had lower rates of having a usual source of sick care (65.7% vs 79.5%, P < .001), receiving a preventive checkup in the past year (64.6% vs 77.1%, P < .001), receiving a preventive dental visit in the past year (73.8% vs 80.6%, P < .001), and receiving specialty care when needed (78.6% vs 90.2%, P < .001) compared with children in parent-led households. In addition, children in grandparent-led households had higher rates of forgone care (5.9% vs 2.8%, P = .002) compared with children in parent-led households. Children in grandparent-led households were less likely to have any medical expenses (33.7% vs 70.1%, P < .001) compared with parent-led households; however, among those with any expenses, a greater proportion of grandparents than parents reported problems paying for health care (23.0% vs 15.2%, P = .01).

TABLE 3

Access to and Utilization of Health Care Services among Children, by Caregiver Type: National Survey of Children's Health, 2016-2019

Grandparent-Led Households (N = 3396)Parent-Led Households (N = 113 377)
Unweighted nWeighted Unadjusted Prevalence (%)95% Confidence IntervalUnweighted nWeighted Unadjusted Prevalence (%)95% Confidence IntervalP Value
Usual source of sick care       
 Yes 2467 65.7 61.5-69.7 95 325 79.5 78.9-80.1 <.001 
 No 909 34.3 30.3-38.5 17 397 20.5 19.9-21.1  
Preventive checkup, past 12 mo       
 Yes 1582 64.6 59.7-69.2 67 102 77.1 76.3-77.8 <.001 
 No 596 35.4 30.8-40.3 14 134 22.9 22.2-23.7  
Preventive dental visit, past 12 moa      
 Yes 2621 73.8 69.9-77.4 91 745 80.6 80.0-81.1 <.001 
 No 703 26.2 22.6-30.1 17 395 19.5 18.9-20.0  
Mental health treatment (among those who needed it), past 12 mob     
 Yes 685 74.7 64.0-83.1 11 122 82.8 81.1-84.4 .06 
 No 125 25.3 17.0-36.0 1739 17.2 15.7-18.9  
Specialty care (among those who needed it), past 12 mo     
 Yes 534 78.6 70.3-85.0 19 628 90.2 89.1-91.2 <.001 
 No 109 21.4 15.0-29.7 1441 9.8 8.8-10.9  
Forgone care, past 12 moc       
 Yes 142 5.9 3.6-9.5 2613 2.8 2.5-3.0 .002 
 No 3294 94.1 90.5-96.4 111 020 97.2 97.0-97.5  
Any medical expenses, past 12 mo       
 Yes 1292 33.7 30.0-37.5 91 240 70.1 69.4-70.8 <.001 
 No 2092 66.3 62.5-70.0 21 617 29.9 29.2-30.6  
Problems paying for medical expenses, past 12 mo      
 Yes 223 23.0 16.5-31.0 12 511 15.2 14.6-15.7 .01 
 No 1099 77.0 69.0-83.5 78 680 84.9 84.3-85.4  
Grandparent-Led Households (N = 3396)Parent-Led Households (N = 113 377)
Unweighted nWeighted Unadjusted Prevalence (%)95% Confidence IntervalUnweighted nWeighted Unadjusted Prevalence (%)95% Confidence IntervalP Value
Usual source of sick care       
 Yes 2467 65.7 61.5-69.7 95 325 79.5 78.9-80.1 <.001 
 No 909 34.3 30.3-38.5 17 397 20.5 19.9-21.1  
Preventive checkup, past 12 mo       
 Yes 1582 64.6 59.7-69.2 67 102 77.1 76.3-77.8 <.001 
 No 596 35.4 30.8-40.3 14 134 22.9 22.2-23.7  
Preventive dental visit, past 12 moa      
 Yes 2621 73.8 69.9-77.4 91 745 80.6 80.0-81.1 <.001 
 No 703 26.2 22.6-30.1 17 395 19.5 18.9-20.0  
Mental health treatment (among those who needed it), past 12 mob     
 Yes 685 74.7 64.0-83.1 11 122 82.8 81.1-84.4 .06 
 No 125 25.3 17.0-36.0 1739 17.2 15.7-18.9  
Specialty care (among those who needed it), past 12 mo     
 Yes 534 78.6 70.3-85.0 19 628 90.2 89.1-91.2 <.001 
 No 109 21.4 15.0-29.7 1441 9.8 8.8-10.9  
Forgone care, past 12 moc       
 Yes 142 5.9 3.6-9.5 2613 2.8 2.5-3.0 .002 
 No 3294 94.1 90.5-96.4 111 020 97.2 97.0-97.5  
Any medical expenses, past 12 mo       
 Yes 1292 33.7 30.0-37.5 91 240 70.1 69.4-70.8 <.001 
 No 2092 66.3 62.5-70.0 21 617 29.9 29.2-30.6  
Problems paying for medical expenses, past 12 mo      
 Yes 223 23.0 16.5-31.0 12 511 15.2 14.6-15.7 .01 
 No 1099 77.0 69.0-83.5 78 680 84.9 84.3-85.4  
a

Among 1 to 17 year olds.

b

Among 3 to 17 year olds.

c

Includes health care needed but not received, including medical care and other kinds of care (eg, dental, vision, mental health).

After adjusting for potential confounders, several of the associations between household type and children’s health conditions and health care access/utilization remained statistically significant (Table 4). Specifically, relative to parent-led households, there was an increased prevalence among grandparent-led households of children with ADHD (adjusted prevalence ratio [aPR] = 1.60; 95% CI, 1.30-1.91), behavioral/conduct problems (aPR = 1.54; 95% CI, 1.25-1.83), depression (aPR = 1.73; 95% CI, 1.24-2.23), learning disability (aPR = 1.48; 95% CI, 1.17-1.79), and any special health care needs (aPR = 1.34; 95% CI, 1.18-1.49); and a decreased prevalence of having a usual source of sick care (aPR =0.93; 95% CI, 0.88-0.97), preventive checkups (aPR = 0.94; 95% CI, 0.89-0.99), and any medical expenses (aPR =0.90; 95% CI, 0.86-0.95). Associations between household type and the following child health conditions and health care access/utilization indicators were no longer significant after adjustment: asthma, oral health problems, overweight/obesity, developmental delay, preventive dental visits, specialty care, forgone care, and problems paying medical expenses.

TABLE 4

Adjusted Associations Between Caregiver Type and Children’s Health Status and Health Care Access/Utilization: National Survey of Children's Health, 2016-2019

Grandparent versus Parent-Led Householdsa
Adjusted Prevalence Ratiob95% Confidence Interval
Health status   
 Asthma 0.98 0.76-1.20 
 Cardiac conditions 0.65 0.29-1.01 
 Oral health problems 1.04 0.81-1.27 
 Overweight/obesity 1.04 0.86-1.21 
 Severe or frequent headaches 0.92 0.63-1.22 
 Attention deficit hyperactivity disorder 1.60 1.30-1.91 
 Anxiety 1.14 0.91-1.37 
 Autism spectrum disorder 1.00 0.66-1.33 
 Behavioral/conduct problems 1.54 1.25-1.83 
 Depression 1.73 1.24-2.23 
 Developmental delay 1.31 0.99-1.63 
 Learning disability 1.48 1.17-1.79 
 Speech/language disorder 1.05 0.69-1.40 
 Any special health care needs 1.34 1.18-1.49 
Health care access/utilization   
 Usual source of sick care 0.93 0.88-0.97 
 Preventive checkup 0.94 0.89-0.99 
 Preventive dental visit 0.97 0.93-1.01 
 Mental health treatment (among those who needed it) 0.99 0.92-1.07 
 Specialty care (among those who needed it) 0.96 0.89-1.02 
 Forgone care 1.22 0.74-1.70 
 Any medical expenses 0.90 0.86-0.95 
 Problems paying for medical expenses 0.90 0.69-1.12 
Grandparent versus Parent-Led Householdsa
Adjusted Prevalence Ratiob95% Confidence Interval
Health status   
 Asthma 0.98 0.76-1.20 
 Cardiac conditions 0.65 0.29-1.01 
 Oral health problems 1.04 0.81-1.27 
 Overweight/obesity 1.04 0.86-1.21 
 Severe or frequent headaches 0.92 0.63-1.22 
 Attention deficit hyperactivity disorder 1.60 1.30-1.91 
 Anxiety 1.14 0.91-1.37 
 Autism spectrum disorder 1.00 0.66-1.33 
 Behavioral/conduct problems 1.54 1.25-1.83 
 Depression 1.73 1.24-2.23 
 Developmental delay 1.31 0.99-1.63 
 Learning disability 1.48 1.17-1.79 
 Speech/language disorder 1.05 0.69-1.40 
 Any special health care needs 1.34 1.18-1.49 
Health care access/utilization   
 Usual source of sick care 0.93 0.88-0.97 
 Preventive checkup 0.94 0.89-0.99 
 Preventive dental visit 0.97 0.93-1.01 
 Mental health treatment (among those who needed it) 0.99 0.92-1.07 
 Specialty care (among those who needed it) 0.96 0.89-1.02 
 Forgone care 1.22 0.74-1.70 
 Any medical expenses 0.90 0.86-0.95 
 Problems paying for medical expenses 0.90 0.69-1.12 
a

Parent-led households are the referent group.

b

Health status models are adjusted for: caregiver sex, physical health status, and mental health status; child sex, age, race/ethnicity, and insurance status/type; and household poverty level, highest education, and number of caregivers. Health care access/utilization are adjusted for the same covariates plus child general health status.

In this analysis of a national sample, the study findings corroborate and build on previous research on the health and well-being of children living in grandparent-led households. In terms of the health status of grandparent caregivers, this study upholds previous findings that grandparent caregivers report worse physical and mental health compared with parent caregivers.6,8 In regard to child health outcomes, previous literature has reported mixed findings on the prevalence of common conditions among children in grandparent-led compared with parent-led households; however, the majority of these studies were not based on nationally representative samples.2,11 The current study found children in grandparent-led households had higher observed rates of several physical, emotional, mental, and developmental health conditions. Although having a disproportionately higher burden of health conditions could have contributed to the circumstances rendering parents unable to care for their child, it also underscores the importance of children in grandparent-led households receiving essential health care services.

The health conditions and health care utilization patterns of custodial grandparents have been well studied; however, no studies to date have examined utilization of essential health care services among children in grandparent-led households using a nationally representative sample. Consequently, this study addresses an important research gap, indicating that children in grandparent-led households are less likely to use certain essential health care services compared with children in parent-led households.

Further investigation is necessary to elucidate why children in grandparent-led households may not receive necessary health care services. This study found that a larger proportion of grandparent-led households than parent-led households are affected by sociodemographic factors such as reliance on public insurance for the child, lower household education levels, and living in a single caregiver household. After adjusting for these possible confounders, we found that only a few health care access/utilization outcomes remained significant, underscoring the important role of sociodemographic factors in accessing needed health care. Previous research suggests custodial grandparents can be difficult for service providers to reach, may not seek help because they lack enabling resources (eg, transportation) to obtain services, or have been disappointed with available services.11,20 Furthermore, research suggests that whether the grandparent became a custodian through informal or formal mechanisms can affect service utilization, with grandparents providing care through formal mechanisms accessing and using more services.21 Other possible contributing factors could include being unaware of current pediatric recommendations for frequency of obtaining certain health care services, prioritizing other responsibilities associated with caring for a child, or the grandparents’ own physical and emotional health obstacles. Additionally, the current study findings indicate that grandparents disproportionately face challenges such as being a single caregiver, having lower income, and possessing lower levels of education, which may affect their ability to secure needed health care for themselves and the children in their care. The majority of children in grandparent-led households in this study did not have any medical expenses, making cost a less likely barrier. However, for the children with any expenses, a greater proportion of grandparents than parents reported problems paying for health care, which could partially explain reduced health care utilization among this subpopulation. Interestingly, in this study, grandparents did not report increased difficulties with several other factors relevant to obtaining health care for their grandchild. Namely, grandparent caregivers reported no differences in handling the demands of raising a child, frustration in getting health care services for the child, and receiving help with care coordination compared with parent-led households. However, compared with parents, grandparents did report lower rates of emotional support and high family resilience.

Previous studies have documented that grandparent caregivers can experience isolation from peers and several emotional challenges.11,22 Custodial grandparents must contend with the changing circumstances in their own life, the events in their child’s life that require the grandparent to become a primary caregiver, as well as the trauma their grandchild may be experiencing around their changing guardianship.11 These emotional challenges compounded with physical vulnerabilities of older caregivers may make it more difficult for custodial grandparents to provide all the necessary care for their grandchildren. One study found that resilience can mediate these negative stressors and consequently interventions to promote resiliency among grandparents may be valuable.11,23 A few studies have shown that interventions aiming to strengthen supportive factors, such as health management, and reduce risk factors, such as isolation, can be beneficial to grandparents’ well-being.11,24 For social support, in particular, grandparents who participate in support groups have been shown to report increased social support compared with those who do not participate.25 

Despite the numerous stressors facing custodial grandparents, they also possess numerous strengths including resourcefulness, benefit finding, and positive caregiving.11 To promote grandparents’ strengths, service sectors interacting with custodial grandparents should be mindful of their complex needs. This study indicates that grandparent caregivers often intersect with or could benefit from the services of other sectors, evidenced by their increased utilization of government benefits and increased rates of food insecurity and unemployment relative to parent caregivers. Indeed, large proportions of grandparent-led households were found to interact with service systems providing financial supports through Temporary Assistance for Needy Families/welfare, Women, Infants, and Children program, food stamps, and free and reduced cost school meals. Therefore, service systems supporting grandparents, including the health care sector, should aim for service coordination and cross-promotion of other sectors’ benefits to optimize the care and well-being of the grandparent–grandchild dyad.

There are several study limitations to consider. First, given that data are cross-sectional, causality cannot be asserted. Second, the survey items only capture caregiver-reported information and may be subject to recall bias if a caregiver cannot accurately remember which health care services the child has used. Third, the survey did not capture the reason why the child is under the care of a grandparent nor how long the child has been in the caregiving arrangement. Additional information surrounding the circumstances of grandparent caregiving arrangements could explain, at least in part, some of the differences found between grandparent- and parent-led households. Finally, if survey respondents were systematically different from nonresponders, nonresponse bias could lead to over- or underestimates of the outcomes presented in this analysis. However, previous analyses of nonresponse bias in the NSCH have found that although nonresponse is generally higher in areas with smaller college-educated populations, lower incomes, less homeownership, and larger non-White populations, no strong or consistent evidence of nonresponse bias is evident after survey weights are applied.26 Despite these limitations, this study can help inform stakeholders working to improve the health of grandparent caregivers and their grandchildren by highlighting areas where increased supportive services may be necessary. Of note, although previous studies of custodial grandparents have frequently been limited by small sample sizes, the current study leverages the ability to pool multiple years of nationally representative data to yield a large sample of more than 3300 children living in grandparent-led households.

Children living in grandparent-led households have worse physical, emotional, mental, and developmental health than children in parent-led households, and lower utilization of essential health care services. Grandparent caregivers may benefit from additional support to ensure that they can access primary, preventive, and specialty health care for their grandchildren in a timely manner. Health care systems, as well as other social services systems, have the potential to address the complex needs of grandparent-led households by providing support services that address the needs of both grandparents and their grandchildren.

Dr Joshi conceptualized and designed the study, completed the statistical analysis, drafted the initial manuscript, and revised the manuscript. Dr Lebrun-Harris conceptualized and designed the study, supervised and advised on the statistical analysis, and critically reviewed and revised the manuscript.

    Abbreviations
     
  • ADHD

    attention deficit hyperactivity disorder

  •  
  • aPR

    adjusted prevalence ratio

  •  
  • CI

    confidence interval

  •  
  • NSCH

    National Survey of Children’s Health

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Competing Interests

CONFLICT OF INTEREST DISCLOSURES: The authors have no conflicts of interest relevant to this article to disclose. The views expressed in this publication are solely the opinions of the authors and do not necessarily reflect the official policies of the US Department of Health and Human Services or the Health Resources and Services Administration, nor does mention of the department or agency names imply endorsement by the US Government.

Supplementary data