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. Author manuscript; available in PMC: 2025 Jan 1.
Published in final edited form as: J Dev Behav Pediatr. 2023 Dec 21;45(1):e54–e62. doi: 10.1097/DBP.0000000000001230

Family support services and reported parent coping among caregivers of children with emotional, behavioral, or developmental disorders

Genevieve Graaf 1, Phillip M Hughes 2, Neal A deJong 4, Kathleen C Thomas 2,3
PMCID: PMC10922057  NIHMSID: NIHMS1931571  PMID: 38127916

Abstract

Objective:

Caregivers of children with special health care needs (CSHCN) experience substantial strain caring for their child’s special needs, due to high needs for health and other support services. Caregivers of CSHCN with emotional, behavioral, or developmental problems (EBDPs) report stress and poor mental health at higher rates than caregivers of other CSHCN. Though family support services are associated with caregiver mental health and well-being among families of CSHCN, the association of these factors with caregiver coping has been underexamined.

Method:

Using the Double ABCX Model of Family Adaptation to guide variable selection, this study uses 2016–2019 data from the National Survey of Children’s Health. Univariate, bivariate, and multivariate logistic analyses examined the association between caregivers’ receipt of adequate care coordination and emotional support services and their reported coping with the day-to-day strains of parenting. These relationships are compared between caregivers of CSHCN with and without EBDPs.

Results:

Receipt of adequate care coordination was associated with higher rates of caregiver-reported positive coping for all caregivers of CSHCN who have no source of emotional support. Receipt of emotional support services was associated with increased reports of positive coping for caregivers for all CSHCN as well. Caregivers reporting only informal sources of emotional support, however, also reported higher rates of positive coping when compared to caregivers with no source of emotional support.

Conclusion:

Mobilization of resources that can aid caregivers in coordinating care and provide emotional support may play a key role in positive caregiver coping for families of CSHCN.

Keywords: Children with Special Health Care Needs, Care Coordination, Caregiver Coping, Emotional, Behavioral, or Developmental Problems

Background

Caregivers of children with special health care needs (CSHCN) experience substantial strain caring for their child’s needs.1 CSHCN often require multiple healthcare appointments, complex medication regimens, and assistance in the tasks of daily living—in which caregivers invest substantial time, energy, and money.2 The strain of parenting and care responsibilities can lessen a caregiver’s ability to provide appropriate care—resulting in poorer health outcomes for the child, the caregivers, and overall family functioning.3

About 30% of CSHCN have an emotional, behavioral, or developmental problem (EBDP)4 such as anxiety, depression, attention deficit disorder, conduct problems, autism, or cognitive or intellectual delays.5 Compared with caregivers of children with other types of special needs, those whose children have an EBDP report more difficulty navigating health systems,6,7 compromised work performance,8 and additional financial pressure.7 Caregivers of children with EBDPs report relatively higher rates of stress, poorer mental health, and reduced coping with the stressors of parenting.5,9

Formal healthcare system supports such as care coordination, respite services, therapeutic and peer support10 can be critical for supporting caregivers of CSHCN. Therapeutic and peer support can reduce mental health symptoms in caregivers11 and increase their competence in navigating complex service systems.12 Further, care coordination—especially when provided in the context of a medical home—is associated with reduced unmet needs, greater satisfaction with care, and reduced caregiver stress.13

Coping for Caregivers of CSHCN

Though studies have examined the association of family stressors and support services with caregiver mental health and family well-being among families of CSHCN,14,15 the association of these factors with caregiver coping has been underexamined. Coping is frequently conceptualized as an individual’s competence in handling an adverse situation or circumstance.16 Given that effective caregiver coping has been found to play a key role in caregiver experiences of stress,17 family functioning,18 and child wellbeing,17 understanding support services that enhance caregiver coping may be critical to enhancing the health and well-being of CSHCN.

This study draws on the Double ABCX Model of Family Adaptation19 to understand the role of family support services in positive caregiver coping. The model asserts that the resources available to the family—both within the family and household and in their community—as well as additional existing family stressors, are important predictors of family wellbeing when faced with stressful circumstances.19 Using this model as a guide for variable selection, we address the following research questions: Controlling for family stressors, resources, and child characteristics, for caregivers of CSHCN, 1) is caregivers’ receipt of adequate care coordination and emotional support services (e.g., peer support group, counseling) associated with increased caregiver coping? Given the unique burdens experienced by caregivers and families of CSHCN with EBDPs, we also ask, 2) are these associations different for families in which CSHCN have EBDPs compared with CSHCN with no EBDPs? In this study, emotional support services are professionally provided or organized sources of emotional support for caregivers.

Methods

This study used pooled 2016–19 data from the National Survey of Children’s Health (NSCH). This publicly available population-based survey is conducted annually by the US Census Bureau. Survey design and administration is detailed elsewhere.20 The NSCH provides detailed information on children’s health and mental health status, health care and support service experiences, and social and environmental context. Weighted data yield state and nationally representative estimates of non-institutionalized children, ages 0 through 17 years old, living in housing units in the United States.20 Due to the use of publicly available, deidentified data, this study was exempt from research ethics committee approval.

Study Sample

This analysis focused on three subsamples with the NSCH: CSHCN overall (N= 30,301), CSHCN with no EBDPs (N= 17,329), and CSHCN with EBDPs (N=12,972). CSHCN and EBDP status are identified through the Child with Special Health Care Needs Screening Tool, which is described in detail elsewhere.21

Key Variables

Dependent Variables

Caregiver Coping is drawn from the question, “How well do you think you are handling the day-to-day demands of raising children?” Four-level ordinal response options were recoded into a binary response (Very well or Somewhat well; Not very well or Not well at all).

Independent Variables

The predictor variables of interest were caregiver receipt of adequate care coordination and professional or organized sources of emotional support. Caregivers were coded as having “Adequate Care Coordination” if they reported that 1) they usually received all the extra help they needed or 2) they did not need extra help arranging care. Caregivers were coded as having “Inadequate Care Coordination” if they reported that they sometimes or never received all the help they needed. Caregiver receipt of emotional support services (professional or organized sources of emotional support) was measured using three survey items, restructured to a three-level categorical variable: No Emotional Support, Only Informal Emotional Supports, and Received Emotional Support Services. Caregivers were asked, “During the past 12 months, was there someone that you could turn to for day-to-day emotional support with parenting or raising children?” If the respondent answered “yes,” they were asked to identify the source of their support with a yes/no answer to a series of non-mutually exclusive options. Respondents reporting no source of emotional support were coded as “no emotional support.” Caregivers reporting only one or more non-professional or non-organized sources of supports (spouse/domestic partner, other family member or close friend, or a place of worship or religious leader)—while reporting no professional or organized sources of emotional support (health care provider, support of advocacy group related to a specific health condition, peer support group, or counselor or other mental health professional)—were coded as “Only Informal Emotional Supports.” Respondents reporting receipt of any type of professional or organized emotional support services—whether in addition to non-professional supports or not—were coding as having “Received Emotional Support Services.”

Covariates

Multivariable models controlled for categorical measures of child demographics: sex (male, female), age (0–5 years, 6–11 years, and 12–18 years), and racialized minority status (race, ethnicity). Race and ethnicity classifications reflect respondents’ concept of the socio-cultural groups to which they belong and included the following four categories: 1) White, non-Hispanic, 2) Hispanic, 3) Black, non-Hispanic, and 4) Other/Multiracial, non-Hispanic. Covariates also included family resources: caregiver education level (high school or less, more than high school), household language (English or not English), household income (less than 100% FPL, 100–199% FPL, 200–399% FPL, over 400% FPL), family structure (single caregiver or other family type, two caregiver family), continuity of child’s health insurance (continuously insured for last 12 months or not), and neighborhood support (high neighborhood support, low neighborhood support).22 Family stressors were measured by child’s level of impairment (daily activities are never or minimally affected; daily activities are moderately or consistently affected).

Due to the high rates at which CSHCN experience adverse childhood experiences (ACEs),23 models also controlled for children’s exposure to ACEs as an indicator of family stress. In the NSCH, the CSHCN’s experience of ACEs was measured based on caregiver report of a range of adverse experiences—most of which affect the whole family system: child experience of discrimination, family financial hardship, parental divorce, incarceration, death, substance use, or mental illness, or exposure to neighborhood or domestic violence. Consistent with prior studies24 these variables were used to create a binary variable of less than two or two or more ACES.

Analysis

The study sample included all children in the datasets, years 2016 through 2019, who met the criteria for having Special Health Care Needs (n= 30,301). Analyses were conducted in STATA MP 16.1. STATA’s survey commands (svy) were used to set the data, applying the provided survey weights, to adjust for the complex survey design and allow for national estimates in analytic outcomes. Prior to the release of the public use data files, missing child age and race/ethnicity data was imputed during the weighting process using hotdeck methods20 and missing income was multiply imputed. Less than 3% of the sample was missing non-imputed data for other individual covariates, and these observations were excluded from multivariable analysis. The final multivariable sample included 92.3% of the total CSHCN sample (27,952 of 30,301 observations). Up to 10% of observations with missingness can be dropped without compromising the national representativeness of the data, its weighing, and related analytic outcomes.25

Univariate and bivariate analyses were conducted to assess for significant differences in frequencies for all independent variables and covariates comparing CSHCN across the primary predictor variables of interest. Univariate analysis compared predictor, outcome, and control variables among all CSHCN. Bivariate analysis examined differences in characteristics across CSHCN with and without EBDPs. Weighted prevalence estimates for each group were generated and compared across groups. Further bivariate analysis compared reported coping of caregivers of CSHCN with no EBDPs and CSCHN with EBDPs, stratifying by adequacy of care coordination and receipt of emotional support services. Statistical significance of differences across groups was assessed using the chi-square test in both analyses.

Fixed effects multivariable logistic regression models estimated the association between family supports (adequate care coordination and emotional support services) and reported caregiver coping, adjusting for the family stressor, resource, and child demographic covariates described above. The model was run for three samples: 1) all CSHCN, 2) only CSHCN with no EBDPs, and 3) only CSHCN with EBDPs.

Results

Table 1 provides national prevalence estimates of caregiver coping and family support service variables, as well as the socioeconomic and demographic characteristics of the sample for all CSCHN and stratified by EBDP. Statistically significant differences existed between CSHCN with and without EBDPs for all outcome, predictor, and control variables except for household language and insurance continuity. Rates of positive caregiver coping were higher among caregivers of CHSCN with no EBDPs (98.3% v. 95.1% for CSCHSN with EBDPs; p<0.01). Further, need for care coordination was higher among caregivers of CSHCN with EBDPs. A larger proportion of caregivers of children with EBDPs reported no emotional supports (19.9% v. 24.8% for CSCHSN with EBDPs; p<0.001) and fewer reported having only informal emotional supports (42.7% v. 27.2% for CSCHSN with EBDPs; p<0.001). Furthermore, caregivers of children with EBDPs reported receiving emotional support services (37.4% v. 48.0% for CSCHSN with EBDPs; p<0.001). Families of CSHCN with EBDPs also reported significantly higher rates of ACEs exposure, impairments in daily living activities, living in non-supportive neighborhoods, caregivers with less than a high school education level, incomes lower than 100% of the FPL, and living in non-two parent households.

Table 1.

Child and family characteristics and supports, for all CSHCN and stratified by emotional, behavioral, or developmental problems

Characteristics All CSHCN CSHNC with no EBDPs CSHCN with EBDPs
% a % a % a p<
Parent Coping 0.001
   Not Well 3.1% 1.7% 4.9%
   Well 96.9% 98.3% 95.1%
Care Coordination 0.001
  Inadequate Care Coordination 10.8% 5.6% 17.0%
  Adequate Care Coordination 2.9% 1.7% 4.3%
  No Need for Care Coordination 84.2% 90.8% 76.2%
  Missing 2.2% 1.9% 2.4%
Emotional Support Type 0.001
   No Emotional Supports 22.1% 19.9% 24.8%
   Only Informal Emotional Supports 35.8% 42.7% 27.2%
   Received Emotional Support Services 42.2% 37.4% 48.0%
Family Stressors
  Adverse Childhood Experiences (ACEs) 0.001
   Child Experienced less than 2 ACEs 65.7% 73.9% 55.6%
   Child Experienced 2 or more ACEs 34.3% 26.1% 44.4%
  Impairment in Daily Activities 0.001
   No Impairment or Minimal Impairment 46.1% 58.9% 30.5%
   Moderate to Severe Impairment in Daily Activities 53.9% 41.1% 69.5%
Family Resources
  Neighborhood Support 0.001
   Does not live in a Supportive Neighborhood 51.8% 47.4% 57.2%
   Lives in a Supportive Neighborhood 48.2% 52.6% 42.8%
  Caregiver Education 0.002
   Less than High School 34.1% 32.1% 36.6%
   More than High School 65.9% 67.9% 63.4%
  Household Language 0.936
   Primary Language is not English 7.8% 7.8% 7.9%
   English is Primary Language 92.2% 92.2% 92.1%
  Household Income 0.001
   Less than 100% FPL 24.3% 21.5% 27.7%
   100–199% FPL 22.4% 21.6% 23.3%
   200–399% FPL 25.2% 26.0% 24.3%
   More than 400% of FPL 28.2% 30.9% 24.8%
  Family Structure 0.001
   Single Parent or Other Structure Household 35.4% 30.9% 40.9%
   Two parent Household 64.6% 69.1% 59.1%
  Insurance Continuity 0.298
   Child Experienced Gap in Coverage 6.9% 6.6% 7.4%
   Insured All of Last 12 Months 93.1% 93.4% 92.6%
Child Demographics
  Child Age 0.001
   0–5 years 17.8% 21.6% 13.2%
   6–11 years 37.8% 35.6% 40.5%
   12–18 years 44.4% 42.9% 46.4%
  Child Sex 0.001
   Male 58.0% 55.2% 61.5%
   Female 42.0% 44.8% 38.5%
  Race/Ethnicity 0.034
   Black, non-Hispanic 16.6% 15.3% 18.2%
   Hispanic 21.4% 21.2% 21.6%
   Other/Multiracial, Non-Hispanic 9.4% 10.0% 8.7%
   White, non-Hispanic 52.6% 53.4% 51.5%
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a

Weighted proportions

Data Source: National Survey of Children’s Health (NSCH), 2016–2019

Table 2 presents unadjusted nationally representative proportions of reported caregiver coping, comparing this outcome among caregivers of CSHCN who report adequate or no need for care coordination to those with inadequate care coordination. Caregiver coping is also compared for caregivers with no emotional supports, only informal emotional supports, and those who report receipt of emotional support services. These are calculated and reported separately for all CSHCN and stratified by children with and without EBDPs. Rates of poor coping (Not Very Well or Not Well at All) were generally higher for all caregivers of children with EBDPs than for those whose children do not have EBDPs, regardless of the adequacy of care coordination or receipt of emotional support services. For caregivers of CSHCN with no EBDPs, those with inadequate care coordination reported poor coping at significantly higher rates (4.6%) than those reporting adequate or no need for care coordination (1.5%). For these families, poor coping was reported at slightly higher rates among those who reported receiving emotional support services (1.2%) than those who reported only having informal emotional supports (0.8%), but was reported at the highest rates among caregivers reporting no sources of emotional support (3.6%). Among caregivers of CSHCN with EBDPs, rates of reported poor coping were slightly higher among caregivers receiving emotional support services (3.1%) when compared with caregivers reporting only information sources of emotional support (2.4%). Rates of caregivers reporting poor coping were highest among caregivers of children with EBDPs reporting inadequate care coordination (8.2%) and no source of emotional support (10.4%).

Table 2.

Bivariate associations: Parent Coping Stratified by Type of SHCN and Support Service Use

Well Not Well
% a % a p
All CSHCN
N= 30,301		 Inadequate CC 92.8% 7.2% 0.00
Adequate CC or no need 97.5% 2.5%
No Emotional Supports 92.9% 7.1% 0.00
Only Informal Emotional Supports 98.7% 1.3%
Received Emotional Support Services 97.8% 2.2%
CSHCN with no EBDPs
N= 17,329		 Inadequate CC 95.4% 4.6% 0.01
Adequate CC or no need 98.5% 1.5%
No Emotional Supports 96.2% 3.6% 0.00
Only Informal Emotional Supports 99.2% 0.8%
Received Emotional Support Services 98.8% 1.2%
CSHCN with EBDPs
N=12,972		 Inadequate CC 91.8% 8.2% 0.00
Adequate CC or no need 96.0% 4.0%
No Emotional Supports 89.6% 10.4% 0.00
Only Informal Emotional Supports 97.6% 2.4%
Received Emotional Support Services 96.9% 3.1%
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a

Weighted proportion

Data Source: National Survey of Children’s Health (NSCH), 2016–2019

Table 3 displays the results of multivariable logistic regression models assessing the association between adequate care coordination, emotional support services, and positive caregiver coping, controlling for other family stressors and resources and CSHCN demographics. This table reports outcomes for all CSHCN, for CSHCN with EBDPs, and for CSHCN with no EBDPs, adjusted for covariates. Among all CSHCN, for caregivers reporting no source of emotional support, having adequate care coordination was significantly associated with higher rates of caregivers reporting positive coping (AOR=1.62 [1.18, 2.22]). This held true among CSHCN with EBDPs (AOR=1.55 [1.09, 2.19]), but not for those without EBDPs.

Table 3.

Adjusted family support service predictors of reported caregiver coping (very or somewhat well) for CSHCN, stratified by EBDPs

All CSHCN CSHCN with no EBDPs CSHCN with EBDP
AOR p 95% CI AOR p 95% CI AOR p 95% CI
Family Support
 Care Coordination
  Adequate Care Coordination 1.62 <0.001 1.18 2.22 0.88 0.76 0.39 1.98 1.55 0.01 1.09 2.19
 Emotional Support Type
  Only Informal Emotional Supports 5.15 <0.001 3.57 7.42 5.36 <0.001 2.78 10.36 4.45 <0.001 2.88 6.86
  Received Emotional Support Services 3.22 <0.001 2.20 4.71 3.32 <0.001 1.47 7.51 3.24 <0.001 2.10 4.98
Family Stressors
 Adverse Childhood Experiences (ACEs)
  Child Experienced 2 or more ACEs 0.42 <0.001 0.30 0.58 0.41 <0.001 0.22 0.75 0.47 <0.001 0.32 0.67
 Impairment in Daily Activities
  Moderate to Severe Impairment in Daily Activities 0.56 <0.001 0.40 0.79 0.62 0.09 0.36 1.07 0.70 0.15 0.44 1.14
Family Resources
 Neighborhood Support
  Lives in a Supportive Neighborhood 1.39 0.07 0.97 2.01 1.01 0.98 0.56 1.83 1.55 0.04 1.01 2.38
 Caregiver Education
  More than High School 0.62 0.02 0.42 0.92 0.60 0.18 0.29 1.26 0.61 0.04 0.38 0.97
 Household Language
  Primary Language is not English 0.51 0.04 0.28 0.95 0.46 0.23 0.13 1.64 0.58 0.13 0.28 1.18
 Household Income
  100–199% FPL 1.22 0.41 0.76 1.94 1.30 0.51 0.60 2.83 1.27 0.41 0.72 2.23
  200–399% FPL 0.92 0.75 0.56 1.52 1.00 1.00 0.40 2.52 0.93 0.82 0.53 1.66
  More than 400% of FPL 0.65 0.07 0.40 1.04 0.62 0.33 0.24 1.61 0.70 0.19 0.41 1.19
 Family Structure
  Single Parent or Other Structure Household 1.28 0.19 0.88 1.85 1.16 0.71 0.54 2.48 1.41 0.10 0.94 2.12
 Insurance Continuity
  Child Experienced Gap in Coverage 0.43 0.01 0.24 0.78 0.40 0.08 0.14 1.11 0.42 0.02 0.21 0.87
Child Demographics
 Child Age
  6–11 years 1.20 0.40 0.78 1.84 1.03 0.94 0.51 2.05 1.15 0.60 0.68 1.95
  12–18 years 1.14 0.45 0.81 1.61 1.89 0.10 0.89 3.99 0.97 0.86 0.66 1.42
 Child Sex
  Male 1.05 0.78 0.76 1.44 0.96 0.89 0.53 1.72 1.01 0.95 0.69 1.49
 Race/Ethnicity
  Black, non-Hispanic 0.75 0.24 0.47 1.21 0.35 0.02 0.15 0.82 1.18 0.61 0.63 2.19
  Hispanic 0.98 0.93 0.58 1.64 2.03 0.22 0.66 6.24 0.79 0.39 0.46 1.36
  Other/Multiracial, Non-Hispanic 0.66 0.03 0.46 0.96 0.67 0.30 0.31 1.44 0.62 0.02 0.40 0.94
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Data Source: National Survey of Children’s Health (NSCH), 2016–2019

Receipt of emotional support services for caregivers, among those experiencing inadequate care coordination, was associated with increased reports of caregivers coping well (AOR=3.22 [2.20, 4.71]) for all CSHCN, compared to caregivers reporting no source of emotional support. This finding is consistent among caregivers of CSHCN with EBDPs (AOR=3.24 [2.10, 4.98]) as well as for caregivers whose children did not have EBDPS (AOR=3.32 [1.47, 7.51]). Rates of reported caregiver coping were even higher for caregivers reporting only informal sources of emotional support for all CSHCN (AOR=5.15 [3.57, 7.42]), both with (AOR=4.45 [2.88, 6.86]) and without EBDPs (AOR=5.36 [2.78, 10.36]).

Of note, two or more ACEs exposures for CSHCN was significantly associated with caregiver coping for all samples. For all CSHCN, exposure to two or more ACEs was associated with reduced caregiver coping (AOR=0.42 [0.30, 0.58]), and this association was consistent across both types of CSHCN. Additionally, caregivers of CSHCN with greater levels of impairment in daily living report positive caregiver coping at lower rates.

Discussion

Study results show that receiving adequate care coordination and emotional support services is associated with increased caregiver reports of positive coping among caregivers of CSHCN—and that these services may be particularly instrumental in caregiver coping for caregivers of CSHCN with EBDPs, especially those with no informal sources of emotional support. However, findings also suggest that having informal sources of emotional support may be even more important for caregiver coping. These results point to several avenues for intervention and additional research.

Findings indicate that care coordination is important for caregiver coping, primarily for CSHCN who have EBDPs and caregivers with no sources of emotional support. Children who qualify for Medicaid-covered services can receive care coordination along with a broad array of supports, but waitlists for these programs are usually long.26 Care coordination may be provided through healthcare systems, but the option to bill for these services is new.27 Building a system for documentation to meet new billing standards is arduous; as a result, to date, there is little evidence of uptake.28 Healthcare systems need to support consistent documentation and billing of care coordination to provide equitable access and to enable examination of these services and their impact.29 Once care coordination services become a standard element in electronic health records, we can use records to understand better who receives it, who does not, and who should.30

These findings also have implications regarding the role of professional sources of emotional support and informal sources of emotional support for caregivers of CSHCNs. Both informal sources of emotional support and receipt of emotional support services play an important role in caregiver coping for all parents of CSHCNs, especially for the most vulnerable families. Though it may appear counterintuitive that those with only informal emotional supports report higher levels of positive coping than those receiving organized emotional support services, this may reflect that families facing difficulties in coping are more likely to access formal support systems for assistance. Further, these families may be linked more closely to health or behavioral health systems due to the more complex needs of their child.

For this reason, emotional support services this may be particularly important for caregivers of CSHCN with EBDPs; these families report no sources of emotional supports at much higher rates that caregivers of CSHCN with no EBDPs, and report receipt of emotional support services at slightly higher rates. The social isolation often experienced by these families, the increased financial and functional impacts of their child’s needs, and the daily stress experienced by these families31 may contribute to higher need for emotional and social support. Future research should use longitudinal approaches to understand how caregivers’ use of professional or organized sources of emotional support—and their use of informal sources of emotional support—change overtime. Additionally, it may be important to examine the role that emotional support services may play in helping families and children develop informal emotional support systems.

When considered in the context of the importance of adequate care coordination for caregivers of CSHCN with EBDPs, especially those with no sources of emotional support, understanding the trajectory of caregiver social and emotional support experiences may support the use of wraparound and caregiver peer support services. Both are evidence-based interventions used widely in public children’s behavioral health systems of care.12,32 Wraparound care planning and coordination supports families in the transition from relying on the professional or organized support of the behavioral health system to relying on community and neighborhood social supports.32 Caregiver peer support services are provided by caregivers with the lived experience of raising a child with complex mental health needs. These peer caregivers provide emotional support to other caregivers of children with mental health needs and help them to navigate service systems and advocate for the needs of their child.12 Findings suggesting that families receiving both adequate support for care coordination and emotional support services for caregivers provide additional evidence that access to a wide array of community-based health care services is essential to enhancing the well-being of families with CSHCN with EBDPs.

Finally, the finding that having a child with two or more ACEs is associated with reduced reports of positive caregiver coping is novel. This relationship seems reasonable given that many of the ACEs measured in the NSCH are forms of household hardship or dysfunction that affect all members of the family (e.g., financial hardship or the mental illness of a family member); however, ACEs are almost exclusively examined in the literature with regards to their impact on the child.33 Our finding demonstrates that ACEs are directly and significantly associated with caregiver outcomes, such as coping. Additionally, this motivates the development of caregiver-targeted interventions or the modification of child-targeted interventions to support families experiencing ACEs. For example, trauma-focused cognitive behavioral interventions that have been found to be effective in treating trauma-related distress may have tangible benefits if targeted for implementation with families experiencing ACEs.34 Because ACEs are linked to increased risk for emotional or behavioral problems,33 as well as both increased need for care coordination and higher rates of unmet need for care coordination,35 caregivers whose children have had one or more ACEs may also benefit from additional support for care coordination. Future work should examine other caregiver outcomes that may be associated with ACEs, such as the use of mental health services and perceived health, to better understand the nature of the relationship between these ACEs and family wellbeing.

While this study offers a unique contribution to the research about CSHCN in its novel focus on the role of care coordination and ACEs in caregiver coping, as well as its conceptualization of professional emotional support service use, these findings should be considered in the context of a few key study limitations. Most importantly, the classification of a child as having an EBDP is based solely on the caregivers’ report of their child having a qualifying condition rather than through a diagnostic screening. Additionally, the use of caregiver-reported survey data may be subject to inaccuracies in recall. Further, the measure of caregiver coping in this study relies on one self-reported item. While this unidimensional metric may be a less robust measure of caregiver coping, this study centers the perspectives of caregivers as experts in their own experiences. Finally, the relationships reported here can make no causal claims, as the analysis was cross-sectional, and there is potential for unmeasured factors that may confound findings.

Conclusion

Given the substantial strain caregivers of CSHCN experience, understanding environmental and social factors that are associated with enhanced coping for caregivers provides critical guidance for assessing the needs of families of CSHCNs and identifying services and resources that can support them. Attention to family stressors represented by ACEs assessments and mobilization of resources that can aid caregivers in coordinating care and provide emotional support may play a key role in positive caregiver coping, particularly for caregivers of CSHCN with EBDPs.

Acknowledgments

Research in this publication was also supported in part by the National Institute of Mental Health of the National Institutes of Health under Award Number 1K01MH129991. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

This research was partially supported by a National Research Service Award Pre-Doctoral/Post-Doctoral Traineeship from the Agency for Healthcare Research and Quality sponsored by The Cecil G. Sheps Center for Health Services Research, The University of North Carolina at Chapel Hill, Grant No. T32-HS000032.

Footnotes

The authors have no conflicts of interest to declare.

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