Caregiver Concerns About Child Development During the COVID-19 Pandemic Among Those With Missed Appointments: Preliminary Results

HIGHLIGHTS

• •Caregivers were concerned regarding child development after developmental therapy service disruption.
• •Caregiver job insecurity was associated with perceived child developmental concerns.
• •Developmental services for children should be considered essential health care.

Abstract

Introduction

The aim of this study is to examine caregivers’ perception of their child falling behind on developmental milestones after canceled or delayed appointments in metropolitan Chicago during stay-at-home orders, from March 21 to May 7, 2020.

Methods

We fielded a web-based caregiver survey to understand the impact of the early weeks of the COVID-19 pandemic on children's healthcare experiences, characterizing the proportions of caregiver perceptions of children falling behind in developmental milestones by canceled or delayed appointment types. Multivariable logistic regression was used to estimate the likelihood of falling behind in milestones.

Results

Overall, 229 (7.5%) caregivers reported children with canceled or delayed appointments falling behind in developmental milestones. Approximately 25.4% of caregivers reported children falling behind on milestones in the missed therapeutic group, compared with that in the other missed group (2.9%) (p<0.001). Children in the missed therapeutic group (AOR=10.3, 95% CI=7.60, 14.0) and caregivers who experienced job loss (AOR=1.59, 95% CI=1.11, 2.28) or reduced hours or pay (AOR=1.90, 95% CI=1.28, 2.82) had higher odds of falling behind on developmental milestones.

Conclusions

Implementation of new strategies to address the social needs of families should be developed when disruptions in developmental or therapeutic services among children occur, particularly among children living in households with job insecurity.

INTRODUCTION

Children with special healthcare needs who receive developmental and therapeutic services, such as physical, occupational, and speech therapy, are a particularly vulnerable population. Earlier developmental and therapeutic services, as seen through state-coordinated early intervention (EI) services have been shown to improve long-term outcomes among younger children (newborn to those aged 3 years).1, 2, 3, 4, 5 However, in Illinois and other states, many children eligible for EI do not receive services.⁶ In addition, disparities in developmental or special education services for older children (aged ≥6 years) are common, particularly among racial and ethnic minority children.⁷ When developmental and therapeutic services among children are disrupted or delayed, this may lead to poor physical, developmental, behavioral, and mental health outcomes.2, 3, 4, 5^,8, 9, 10

The coronavirus disease 2019 (COVID-19) pandemic prompted stay-at-home government orders across the U.S., leading to disruptions in access to health care for many children.⁸ Interruptions in developmental and therapeutic services during the COVID-19 pandemic have not been extensively examined.⁹ We sought to examine caregivers’ perceptions of their children's progress toward developmental milestones by comparing children who had canceled or delayed developmental and therapeutic appointments with children who had other canceled or delayed medical appointments across social indicators of health in metropolitan Chicago during stay-at-home orders from March 21 to May 7, 2020.

METHODS

Investigators at Ann & Robert H. Lurie Children's Hospital of Chicago (Lurie Children's), an independent Children's Medical Center serving a majority minority urban population of children, fielded a web-based survey to understand the impact of the early weeks of the COVID-19 pandemic on children's healthcare experiences. Using methods described elsewhere,¹⁰ survey invitations were disseminated through email or text message from May 6 to May 14, 2020 to caregivers of children aged <18 years who had established care at Lurie Children's. Caregivers were asked to complete a 24-question survey that would take approximately 10 minutes to complete. Caregivers who completed the survey were given a $5 gift card.

We identified 33,513 children from the electronic medical record (EMR) who met study recruitment criteria, and 31,568 (94%) of phone numbers successfully received an SMS message with a survey link. Surveys were started by 4,282 (response rate=14%) and completed by 4,147 (completion rate=97%) caregivers. Most responses were collected from caregivers whose children had an appointment canceled or delayed/rescheduled.

We examined caregiver-reported perceptions of whether their children were falling behind on developmental milestones by comparing children who had canceled or delayed medical appointments. Medical appointments included any appointment with a healthcare provider at Lurie Children's and ones outside of Lurie Children's: well child checkup; visit for chronic condition; sick visit; subspecialist doctor; emergency room; hospital admission; surgery or procedure; diagnostic procedure; behavioral and mental health services; physical, occupational, or speech therapy visit including EI; and other services. We examined caregivers’ responses to the following question about their children: Which of these, if any, has happened to your child because of a cancellation or delay since the Stay-at-Home Order? and the prompt responding affirmatively with Falling behind on developmental milestones was included in our analysis as the outcome of interest. All outcome responses were grouped by caregiver-reported canceled or delayed medical appointment type after March 21, 2020: (1) missed therapeutic group (physical, occupational, or speech therapy appointment) and (2) other missed group (medical appointments other than physical, occupational, or speech therapy). Children who missed both appointment types were categorized in the missed therapeutic group. Responses were linked to EMR data to capture a child's age (0–35 months, 3–5 years, ≥6 years), mirroring the qualifying age criteria for EI. Variables obtained through the caregiver-reported survey included the child's race and ethnicity; insurance status at the time of the survey; caregiver age; caregiver job loss; preferred language; and receipt of any medical services since March 21, 2020.

Chi-square tests of association examined differences in proportions by whether caregivers reported that their children were falling behind on developmental milestones versus not falling behind on developmental milestones. Logistic regression examined the associations of whether caregivers reported that their children were falling behind on developmental milestones with canceled or delayed appointment type groups across significant patient sociodemographic characteristics. Analyses were weighted for sociodemographic characteristics to be representative of Lurie Children's overall patient population. This study was considered exempt from human subject research by Lurie Children's IRB.

RESULTS

Overall, 4,202 parents responded to the survey. For this study, we excluded 1,149 respondents whose children did not experience a missed medical appointment, who did not complete the question related to caregiver report of whether their child was falling behind on developmental milestones, or who had missing data for sociodemographic characteristics, for an overall sample size of 3,053. There were 229 (7.5%) caregivers who reported their children falling behind on developmental milestones with a missed therapeutic or missed other appointment types (Table 1). For children in the missed therapeutic group, 25.4% of caregivers reported their children falling behind on milestones, compared with that in the other missed group (2.9%) (p<0.001). A larger proportion of children whose parents had concerns about falling behind on developmental milestones were younger (newborn to age 5 years) (63.3%) than the proportion of children not falling behind on milestones (38%) (p<0.001). There were no significant differences by race and ethnicity among children falling behind developmental milestones compared with those among children not falling behind on milestones (p=0.25). More caregivers reported job loss and reduced hours or pay (68.9%) among children falling behind on milestones than among children not falling behind on milestones (56.1%) (p<0.001).

Table 1.

Sociodemographic Characteristics of Children Perceived as Falling Behind Versus Not Falling Behind in Development by Parent Report, During the First Wave of the COVID-19 Pandemic

Characteristic	Column percentage Total sample (N=3,053)	Row percentage Falling behind in development (n=229)	Row percentage Not falling behind in development (n=2,824)	p-value
	Unweighted n	Unweighted n (weighted %)	Unweighted n (weighted %)
Age of child				<0.001
0–35 months	963	112 (45.9)	851 (26.8)
3–5 years	413	44 (17.4)	369 (11.2)
≥6 years	1,677	73 (36.7)	1,604 (62)
Race/ethnicity				0.250
Hispanic	919	82 (39.1)	837 (32.5)
Non-Hispanic Asian	124	10 (4.7)	114 (4.5)
Non-Hispanic Black	231	15 (8.3)	216 (9.1)
Non-Hispanic multiraciala	156	16 (7.0)	140 (5.0)
Non-Hispanic White	1,591	103 (39.4)	1,488 (47.8)
Other/unspecified	32	3 (1.4)	29 (1.1)
Missed appointment typeb				<0.001
Therapeutic	588	153 (25.4)	435 (74.6)
Other	2,465	76 (2.9)	2,389 (97.1)
Insurance (during COVID-19)				0.031
Private	1,889	124 (51.7)	1,765 (59.4)
Public	1,164	105 (48.3)	1,059 (40.6)
Age of caregiver (years)				< 0.001
18–30	415	46 (20.1)	369 (13.0)
31–40	1,463	123 (52.0)	1,340 (46.1)
41–50	961	52 (24.1)	909 (33.4)
>50	206	8 (3.8)	198 (7.5)
Caregiver job loss during pandemic				<0.001
Lost job	704	71 (33.4)	633 (23.5)
Reduced hours or pay	1,004	82 (35.5)	922 (32.6)
No	1,345	76 (31.1)	1,269 (43.9)
Language spoken at home				0.187
English	2,782	203 (86.9)	2,579 (90.3)
Spanish	233	20 (10.1)	213 (8.6)
Other	36	6 (3.0)	30 (1.1)
Had any health service since March 21, 2020				0.105
Yes	1,619	136 (58.0)	1,483 (52.4)
No	1,434	93 (42.0)	1,341 (47.6)

^aNon-Hispanic multiracial includes American Indian/Alaska Native and Native Hawaiian/Pacific Islander.

^bOther canceled/delayed appointment includes all other appointments other than physical, occupational, and speech therapy.

After adjusting for sociodemographic characteristics and missed appointment type, caregivers reported children in the missed therapeutic group had higher odds of falling behind on milestones (AOR=10.3, 95% CI=7.60, 14.0) than children in the other missed group (Table 2). Caregivers who experienced job loss (AOR=1.59, 95% CI=1.11, 2.28) or reduced hours or pay (AOR=1.90, 95% CI=1.28, 2.82) had higher odds of reporting their child falling behind on developmental milestones than caregivers who did not experience job loss or reduced hours or pay.

Table 2.

Logistic Regression Results for Likelihood of Perceived Falling Behind on Development Among Children in Metropolitan Chicago During the Stay-At-Home Period of the COVID-19 Pandemic

Variable	AOR	95% CI
Missed appointmenta type
Therapeutic	10.3	7.60,14.0
Other	ref	ref
Age of child
0–35 months	2.38	1.71, 3.32
3–5 years	2.09	1.37, 3.18
≥6 years	ref	ref
Race/ethnic
Hispanic	1.33	0.91, 1.95
Non-Hispanic Asian	1.25	0.60, 2.62
Non-Hispanic Black	0.89	0.48, 1.63
Non-Hispanic multiracial	1.61	0.86, 3.00
Non-Hispanic White	ref	ref
Other	0.84	0.18, 3.96
Insurance after COVID-19
Private	ref	ref
Public	1.00	0.69, 1.44
Caregiver job loss
Lost job	1.59	1.11, 2.28
Reduced hours or pay	1.90	1.28, 2.82
No	ref	ref

^aOther canceled/delayed appointment includes all other appointments other than physical, occupational, and speech therapy.

DISCUSSION

In this clinical sample, children who experienced disruptions in therapeutic appointments such as physical, occupational, or speech therapy services had higher odds of falling behind on developmental milestones than children who experienced canceled or delayed other missed appointment types by caregiver report. We observed higher odds of children falling behind on developmental milestones by caregiver report among caregivers reporting job loss or reduced hours or pay. Disruptions in pediatric health services across the U.S. among children with special healthcare needs have impacted many vulnerable families during the pandemic.^9,11, 12, 13, 14

The American Academy of Pediatrics has stated that early identification and management of developmental disorders are critical to the well-being of children and their families.¹² Consistent and early developmental and therapeutic services improve developmental outcomes among children with special healthcare needs¹³ through EI under Part C of the Individuals with Disabilities Education Act and special education through Part B of the Disabilities Education Act.¹⁴ The disruptions in medical care found in our study can impact children at critical developmental periods in their lives. There are many children with unmet healthcare needs, and exposure to adversities or social indicators of health, such as caregiver job loss, impact children's ability to thrive, develop, and grow into healthy adults,^9,15 increasing their risk for poorer health outcomes over their life course.¹⁶

EI and special education services, which include physical, occupational, and speech therapy for children with special healthcare needs, have been shown to improve development and reduce potential delay.^1,17 In addition, EI and special education services are thought to decrease the economic burden placed on the special education system as children get older and reduce the stress among caregivers who provide care for children with special healthcare needs.¹ Our findings of caregivers with job loss or reduced hours or pay reporting their child falling behind on developmental milestones reveals important social factors to consider as reasons for caregivers' perceptions of their child meeting developmental milestones.

Caregivers experiencing job insecurity as seen through job loss or reduced hours or pay likely experience stress to adequately provide for their families' basic needs, leading to more stress in home life, impacting caregiver well-being and mental health as well as caregiver–child relationships.¹⁸ In addition, caregiver job insecurity likely contributes to the likelihood of childhood poverty, which is known to be associated with poor developmental outcomes.¹⁹ Perhaps also, caregivers’ stress related to job insecurity likely also exacerbates caregiver's anxiety about their children's health and perceptions about their children meeting or falling behind on developmental milestones.

Alternatively, it is also possible that caregivers experiencing job insecurity likely were subsequently able to spend more time at home with their children, allowing caregivers to notice developmental concerns for their children that they may not have otherwise observed before. With limited social interactions due to the stay-at-home orders implemented because of the pandemic, caregivers may have perceived that their children were falling behind on milestones and lacked opportunities to discuss their observations with their child's pediatrician. Although our study examined caregivers’ perceptions over a limited period, many families experienced heightened stress and anxiety related to the stay-at-home orders and fear of potential COVID-19 exposure during this time. As a result, many caregivers have had increased concerns about their child's health or possibly were less observant of their child's health, potentially leading to underreporting of caregiver perceptions of their children falling behind on milestones.

However, a higher number of caregivers in our study were concerned about their child falling behind on developmental milestones when their child had canceled or delayed therapeutic appointments compared with when their children had canceled or delayed other medical appointments. Accounting for the stress of the pandemic as well as the potential strain and financial barriers many caregivers with job loss and reduced hours or pay experience, identifying and providing resources to financially vunlerable families to support and mitigate the impact of job insecurity on the well-being of caregivers and children are vital.²⁰ This can be done through partnerships between hospitals, social service agencies, educators, and community- and faith-based organizations to collaborate and implement strategies that meet the socioeconomic needs, reduce the social stressors, and support positive caregiver–children relationships for children and families.¹⁶ Comprehensive home visiting services that promote child health, caregiver health, and family support, such as Help Me Grow South Carolina, are one example that provide resources to foster healthy growth and development for all children in the state of South Carolina.²⁰

Limitations

Our findings should be interpreted in the context of certain limitations. Responses from caregivers of children in metropolitan Chicago may not be generalizable to those in other metropolitan areas or time periods. Response bias is possible, but respondents were similar to nonrespondents in terms of child age and sex. We did not look at specific conditions or diagnoses because not all documented diagnoses by ICD-10 codes in the EMR are able to accurately reflect the severity, variability, and complexity of medical conditions. In addition, we did not examine clinician-observed milestone attainment because we wanted to understand caregivers’ perceptions of their child's development. Although we did not examine the number of missed appointments per patient and we did not ask caregivers questions regarding caregiver stress in this preliminary study, we believe that these are important indicators of child health to examine in future work, in addition to questions regarding family support and other social indicators or determinants of health that may influence child health outcomes. Finally, although data in this study were collected in early May 2020, disparities in access to developmental and therapeutic services were present before the start of the pandemic.^4,11

CONCLUSIONS

Children who experienced missed therapeutic appointments had higher odds of falling behind on developmental milestones, which indicates a potential risk for poor health outcomes. Ongoing national epidemiologic surveillance is needed to continue monitoring how the pandemic may impact children who have experienced disruption in developmental and therapeutic services. In addition, developmental and therapeutic services should be considered essential healthcare services during future stay-at-home orders. Disadvantaged families with children deserve consistent access to healthcare as well as resources that can endure potential disruptions posed by local and national emergencies.

CRediT authorship contribution statement

Audrey G. Brewer: Conceptualization, Methodology, Writing – original draft, Formal analysis, Writing – review & editing. Nina L. Alfieri: Conceptualization, Methodology, Formal analysis, Writing – review & editing. Emily Golbeck: Conceptualization, Investigation, Writing – review & editing, Supervision, Project administration. Anne Bendelow: Conceptualization, Formal analysis, Data curation, Writing – review & editing. Michelle L. Macy: Conceptualization, Methodology, Investigation, Writing – review & editing, Supervision, Project administration. Tracie L. Smith: Conceptualization, Formal analysis, Data curation, Writing – review & editing. Jenifer Cartland: Conceptualization, Methodology, Investigation, Writing – review & editing, Supervision, Project administration. Sarah Babula: Conceptualization, Supervision, Writing – review & editing. Matthew M. Davis: Conceptualization, Methodology, Investigation, Writing – review & editing, Supervision, Project administration.