Understanding caregiver acceptance of screening for family substance use in pediatric clinics serving economically disadvantaged children

Abstract

Background:

Children of parents with substance use disorders are at greater risk for mental and physical health co-morbidities. Despite guidelines, pediatricians rarely screen for substance use in the family/household, citing fear of offending parents. The objectives of this study were to examine 1) caregiver acceptance of pediatricians screening for family/household substance use during well-child visits, 2) prevalence of family/household substance use, and 3) the association between family/household substance use and trust in their child’s pediatrician.

Methods:

This cross-sectional study surveyed adult caregivers presenting a child for medical care at two urban pediatric outpatient clinics using a brief anonymous computer-based survey. The primary outcome measured acceptability of pediatrician screening for family/household substance use. Substance use and concerns about use in the family/household were also assessed.

Results:

Adult caregivers (N=271) surveyed were mean age 35 years, 73% mothers, 90% African American, and 85% on Medicaid. Over half (51%) of caregivers reported substance use by someone in the family/household, most commonly cigarettes (38%), followed by alcohol (19%) and marijuana (10%). Sixty-one percent of caregivers who reported family substance use, expressed concern about use of this substance. The majority (87%) agreed it is appropriate for pediatricians to ask caregivers about family/household substance use. No differences were found between caregivers who did and did not report substance use in their family/household. Caregivers with concerning substance use in their family/household were less likely to trust their pediatrician [OR=0.21, 95%CI:0.05, 0.85]

Conclusions:

Caregivers endorsed acceptance of universal screening for substance use, including illicit substances, and substance use disorders in the family/household during well-child visits. Pediatricians are trusted professionals with expertise in communicating with parents to maximize the health of their patients; assessing family history of substance use and substance use disorders is a natural extension of their role.

INTRODUCTION

The United States is currently experiencing an epidemic of substance use disorders (SUD).¹ Approximately 20.3 million people 12 years or older had a SUD in 2018.¹ An estimated 8.7 million, or one in eight children live in households with at least one parent who had a SUD in the last year, including the approximately 1.4 million children who live with a parent with an opioid use disorder.^2-4 Exposure is greater if additional household members are taken into account. One in four children in the US live in a household where one or more adults has been diagnosed with past-year alcohol abuse or dependence.⁵

Children with parents or other family members who use substances are at greater risk for negative health outcomes, including increased risk for abuse and neglect, as well as academic, social, emotional and health problems.^6-8 Additionally, parental drug use has increasingly led to children being placed into foster care.⁹ While substance use in the household raises concerns about availability and access to alcohol and other drugs, increasing risk of use for adolescents,⁸ studies have shown that even young children of parents with alcohol use disorders have higher health care utilization rates.^7,10

The American Academy of Pediatrics recommends pediatricians screen parents, caregivers, and family members living in the household for substance use.^11,12 Despite the evidence showing the significant impact family substance use can have on children’s well-being and development, a majority of pediatricians do not ask about family substance use during well-child visits.^11,12 Barriers to screening and addressing family substance use include insufficient time, unfamiliarity with screening tools, feeling ill-equipped to handle a positive screen, not having knowledge of appropriate referrals, and risk of offending parents.^13-17 Pediatricians also fear parents and other caregivers will have a negative reaction to questions regarding substance use due to stigma surrounding the topic.¹⁸

However, in prior studies most parents reported they would welcome or not mind being asked about their alcohol or drug use by their child’s health care provider.^19-22 While these studies provide valuable insight, previous studies that have examined parents’ preferences for and acceptance of pediatrician’s substance use screening have focused on legal drugs such as tobacco or alcohol.^19,21,22 To our knowledge, none have queried about illicit drug use specifically, or characterized caregivers’ acceptance of substance use screening related to specific substances beyond alcohol and tobacco. Additionally, these studies have been conducted in relatively affluent settings and only screened for substance use of the adult bringing in the child for his/her pediatric appointment.²³ Living in disadvantaged urban neighborhoods may increase risk for substance use and SUD, influenced by environmental factors like density of alcohol outlets, violent crime rates, and neighborhood disorder.^24-27 Further, distrust of healthcare providers has consistently been shown to be a major barrier to healthcare access for urban, low-income families;^28,29 Given that patients from lower socioeconomic backgrounds may be less trusting of healthcare providers,^28-31 it is important to understand caregivers’ acceptance of pediatricians screening for use of substances, including illicit substances, in the family and household in lower income communities.

The objectives of this study were 1) to examine caregiver acceptance of pediatricians and clinic staff asking about substance use and SUD in the family/household during well-child visits, 2) to assess prevalence of substance use in the families presenting for care in two urban, primary care clinics, and 3) to examine the association between substance use in the family/household and trust in pediatricians. We examined whether screening acceptance differed by substance use in the family/household.

METHODS

Study Population

A convenience sample of adult caregivers of pediatric patients was recruited from two urban clinics, one academic-based clinic with primarily resident providers and one community-based practice, located in economically disadvantaged neighborhoods in Baltimore, Maryland between June 2016 and June 2017. At both clinics, caregivers were approached, in either the waiting area or exam room depending on clinic flow, by study staff to assess their interest in completing an anonymous survey. Study staff followed an IRB-approved script to ask caregivers if they were interested in completing a voluntary survey for a study with the purpose of understanding family substance use and the level of acceptance caregivers have if pediatricians ask them about substance use. As part of the script, study staff emphasized that the survey was anonymous and that they will not be asked for their name of anything that could identify them. The vast majority of caregivers approached at both clinics agreed to take the survey, with few exceptions due to time constraints. Caregivers were defined as parents or legal guardians of pediatric patients presenting at one of these two practice sites. To participate, caregivers had to be English speaking, over 18 years, and could not be patients of the pediatric clinic themselves. Oral informed consent was obtained, which aided in preserving anonymity of the survey, consistent with similar studies.^19,21 All eligible caregivers completed a brief anonymous survey on a tablet using Qualtrics software. No identifying information linking the caregiver to the pediatric patient’s medical record were collected. All caregivers were offered to have the survey read to them. Upon survey completion, caregivers received a $5 gift card. The Johns Hopkins University School of Medicine Institutional Review Board approved this study, as well as internal review committees at both clinical sites.

Measures

Caregiver demographics

Demographic questions queried age, race/ethnicity, highest education/grade level, insurance type, and relationship to the pediatric patient for adult caregivers. Relationship was initially assessed with an open-ended text response but was changed to a multiple-choice question with options: mother, father, grandmother, grandfather, aunt, uncle, sibling, or other with a text response option. These were collapsed to mother, father, grandmother, other and parent unspecified, from the original text response question.

Acceptability measures

Single-item indicators of acceptability were developed to reflect both the literature and clinical experience. Caregivers were asked whether it is appropriate for pediatricians to ask all caregivers about alcohol and drug use in the family/household during regular check-ups, and whether it is appropriate for their child’s pediatrician to ask about alcohol and drug use in their family/household during regular check-ups. Additionally, caregivers were asked whether they believe their child’s pediatrician should 1) ask about alcohol and other drug use in their family/household, 2) ask about health information of family/household members which put the child at risk for health problems, 3) identify things in a child’s environment that put them at risk for health problems, and 4) ask if anyone in the family has a history of SUD just like they ask about a history of diabetes and heart disease. Caregivers were asked how important they thought it was for providers to ask about use of specific substances, and whether they would be comfortable with discussing substance use with their child’s pediatrician. Substances assessed included tobacco; alcohol; marijuana; and heroin, cocaine and other drug use. Each acceptability question had four response options (strongly agree, agree, disagree, and strongly disagree) which were subsequently collapsed into a binary measure of strongly agree/agree and strongly disagree/disagree based on the distributions of the responses.

Trust measures

Single-item indicators of trust were developed to reflect both the literature and clinical experience. Caregiver trust in pediatricians was measured by asking 1) whether they trust the pediatricians in this clinic, 2) whether they trust their child’s pediatrician, 3) whether they felt supported by their child’s pediatrician, and 4) whether they felt their child’s pediatrician tries to help their family. Response options for each trust measure were strongly agree, agree, disagree, and strongly disagree, which were subsequently collapsed into a binary measure of strongly agree/agree and strongly disagree/disagree.

Substance use and concerning substance use

Caregivers were asked if anyone in their family/household (including themselves) currently used tobacco, alcohol, marijuana, heroin, cocaine/crack cocaine, methamphetamine, ecstasy, pain medication (OxyContin, valium, Ritalin, codeine, Percocet), methadone, and other drugs, with the option to select all that apply. Caregivers were asked if they had any concerns about someone in their family/household (including themselves) using the same list of substances. Variables were created for use and concern about use of each individual substance in the family/household. Methadone and heroin use were combined into one category.

Statistical Analysis

Chi-square, fisher’s exact, and t-tests were used to assess differences by clinic in caregiver demographics, substance use screening acceptability, and caregiver trust in pediatrician. Chi-square and fisher’s exact tests were also used to assess differences in acceptability and caregiver trust in pediatrician measures between groups stratified by household substance use status. Logistic regression models were used to examine the acceptability of substance use screening and caregivers trust in pediatricians for 1) those with substance use in the family/household and 2) those with concerning substance use in the family/household, controlling for clinic location. Data from the academic-based clinic and the community practice setting were exploratorily examined for differences. As differences in concerns regarding substance use screening were negligible, respondent-level data from the two clinics were combined for the purposes of the main analyses. Analyses were conducted using Stata 13.³²

RESULTS

Table 1 presents demographics and characteristics for caregivers in our sample. Respondents were primarily mothers (72.6%) of clinic patients, mean age 34.9 (standard deviation=11.1) years, African American (90%), high school educated (51.7%), and insured by Medicaid (85.3%). The majority of caregivers reported that they trusted (95.9%) and felt supported by (93.3%) their child’s pediatrician.

Table 1.

Demographics and Perceived Trust in Pediatrician of Caregivers

	Total n=271(%)
Race
African American	244 (90.0)
White	12 (4.4)
Other	15 (5.5)
Age (mean, sd)	34.9 (11.1)
Relationship to child
Mother	196 (72.6)
Father	28 (10.4)
Grandmother	18 (6.7)
Other	22 (8.2)
Parent unspecified	6 (2.2)
Education
Less than high school	39 (14.5)
High school	139 (51.7)
More than high school	91 (33.8)
Insurance type
Medicaid	226 (85.3)
Private	23 (8.7)
Uninsured	2 (0.8)
Not sure	14 (5.3)
Trust the pediatricians in this clinic	255 (95.2)
Trust my child’s pediatrician	259 (95.9)
My child’s pediatrician supports me	251 (93.3)
My child’s pediatrician tries to help my family	249 (92.6)

Prevalence of substance use in the family and household

Table 2 shows the prevalence of substance use in caregivers’ families/households and concerns about use by substance. Half of caregivers (50.8%) reported substance use by members in their family/household, with approximately one third (31.4%) reporting concern about substance use in their family/household. The most commonly reported substances used by family/household members were legal recreational drugs (cigarettes (37.6%) and alcohol (18.5%)) followed by marijuana (9.6%). Concerns about marijuana use were more prevalent than concerns about alcohol use.

Table 2.

Prevalence of Substance Use and Concerns about Substance Use in Family/Household Members of Pediatric Patients^a

	Use in householdb	Concern about usec	It is important to askd	Feel comfortable discussinge
Any substance use	133 (50.8)	82 (31.4)	221 (81.6)	226 (83.4)
Cigarette/tobacco use	102 (37.6)	72 (27.6)	207 (76.4)	220 (81.2)
Alcohol use	50 (18.5)	6 (2.3)	198 (73.1)	212 (78.2)
Marijuana use	26 (9.6)	11 (4.2)	191 (70.5)	199 (73.7)
Heroin use	5 (1.9)f	3 (1.2)f	186 (68.6)g	194 (71.6)g
Prescription drug useh	4 (1.5)	2 (0.8)	--	--

^aCategories are not mutually exclusive

^bDoes anyone in your family/household (including you) use

^cDo you have any concerns about someone in your family or household (including you) who is using…

^dDuring my child’s check-ups I think it is important for my child’s pediatrician to ask about…

^eDuring my child’s check-ups (or annual physical appointments), I would feel comfortable discussing ___________ with my child's pediatrician.

^fIncludes methadone.

^gAcceptability measures assessed regarding “heroin, cocaine, and other drug use.”

^hImportance and comfort with discussing was not assessed for prescription drug use.

Caregiver acceptance of screening

Overall, caregivers across clinic populations reported screening for and discussion of family/household member substance use with the pediatrician to be highly acceptable (Table 3). Caregivers strongly agreed or agreed that pediatricians should identify things in a child’s environment that put the child at risk for health problems (91.9%). The majority of caregivers believed it is appropriate for pediatricians to ask all caregivers about alcohol and drug use in their family/household during regular check-ups (86.7%) and that pediatricians should ask if anyone in their family has a history of addiction (84.4%). No differences were found in acceptability of substance use screening between caregivers who did and did not report substance use in their family/household members.

Table 3.

Caregivers Acceptability of Substance Use Screening in the Family/Household Stratified by Substance Use in Family/Household Group Status

	n (%)	Substance use (N=133)	No substance use (N=129)	p
Should identify things in a child’s environment that put them at risk for health problems	248 (91.9)	124 (94)	117 (91)	0.33
Should ask about health information of family/household members which could put child at risk for health problems	241 (89.3)	120 (91)	112 (87)	0.29
It is appropriate for pediatricians to ask all caregivers about the alcohol and drug use in my family/household during regular check-ups	235 (86.7)	115 (86)	113 (88)	0.79
It is appropriate for my child's pediatrician to ask about the alcohol and drug use of family/household members during regular check-ups	222 (82.2)	109 (82)	108 (84)	0.60
Should ask about alcohol and drug use in my family/household	225 (83.3)	112 (85)	107 (83)	0.68
Should ask if anyone in family has a history of addiction just like they ask about history of diabetes and heart disease	228 (84.4)	114 (86)	107 (83)	0.44

The level of acceptability by caregivers for substance use screening in family/household members was high across all substances queried, with no significant difference between them [Table 2]. The vast majority of caregivers would be comfortable discussing methadone or heroin use (71.6%) as well as discussing marijuana use (73.7%) in their family/household with a pediatrician.

Caregivers reported preferences with regard to the method of substance use screening and which clinic personnel should conduct screening. The majority (45.7%) of caregivers preferred to be asked by a health professional, followed by a preference for a computer-based form (12.3%) or paper-based form (8.6%). A third (33.5%) had no preference on screening method. Most caregivers preferred that pediatricians conduct screening (64.3%), while some preferred a social worker (9.7%), a nurse (4.1%), or a psychologist (1.1%) to conduct screening. A small percentage (18.6%) had no preference. Over three quarters of caregivers (76.2%) indicated that they would want to be provided with resources or referrals if they had concerns about drug and alcohol use in their family/household. There were no differences in preferred screening method or personnel involvement between respondents with and without substance use or concerning substance use in the family/household.

Substance use in the family and household and feelings of trust and support

Table 4 presents the odds ratios (OR) and 95% confidence intervals (CI) for the adjusted association between substance use in the family/household and caregiver’s feelings of trust and support from their child’s pediatrician and the pediatricians in their clinic. After controlling for clinic location, caregivers who endorsed current substance use in family/household members were less likely to report that their child’s pediatrician supports them and their family [OR=0.23, 95%CI: 0.63, 0.87], and that their child’s pediatrician tries to help their family [OR=0.21, 95%CI: 0.06, 0.74]. There were no differences in trust between those who endorsed current substance use by family/household members and those who did not. However, caregivers with concerning substance use in their homes were significantly less likely to trust their child’s pediatrician [OR=0.21, 95%CI: 0.05, 0.85] and the pediatricians in their clinic [OR=0.13, 95%CI: 0.03, 0.68] compared to caregivers who did not express concerns. The same patterns of lower perceived support and help from their child’s pediatrician for them and their family were observed among those with concerning levels of substance use.

Table 4.

Odds of Caregiver Reporting Trust and Support from Pediatrician by Substance Use and Concerning Substance Use in Family/Household Group Status

OUTCOME VARIABLES	Substance Use		Concerning Substance Use
	aORa	95% CI	aORa	95% CI
Trust the pediatricians in this clinic	0.27	(0.06, 1.30)	0.13	(0.03, 0.68)
Trust my child’s pediatrician	0.34	(0.07, 1.72)	0.21	(0.05, 0.85)
My child’s pediatrician supports me/my family	0.23	(0.63, 0.87)	0.15	(0.04, 0.49)
My child’s pediatrician tries to help me/my family	0.21	(0.06, 0.74)	0.34	(0.13, 0.90)

^aAdjusted model controlling for clinic location

DISCUSSION

The present study examined acceptability of screening for substance use, caregiver concerns about use as well as caregiver trust of physicians, among a sample of caregivers of pediatric patients recruited from two urban outpatient pediatric practice settings. Our findings indicate that in general, regardless of caregiver relationship to the pediatric patient and across different settings, caregivers overwhelmingly endorsed universal screening for substance use and SUD in the family/household during well-child visits. This is consistent with previous literature.^19,21,22 However, the current study extends this previous work by assessing acceptability of screening for substances, beyond tobacco and alcohol. The opioid use epidemic in the United States has revealed the high prevalence of misuse of prescription medications, and other opioids, including heroin, as well as use of other illicit substances that would be missed if providers limit their screening to asking parents only about tobacco and alcohol use. Notably, caregivers in this study reported similar levels of acceptability for screening across a broad number of substances, both licit and illicit. In addition, the current study advances our understanding of acceptability of screening for concerning substance more broadly to the family/household. Previous studies limiting screening to only the caregiver presenting the child for care may be missing other members in the family/household whose substance use is impacting the child’s home environment.^19,21,22

Household substance use and concerning use were highly prevalent; each substance used in the household has unique implications for children’s health. Cigarette use was the most prevalent, which has direct implications on the health of children in the household as second-hand smoke is known to have both short-term and long-term negative health consequences.³³ While a minority reported concerning levels of drinking, almost one in five caregivers reported alcohol use in the family/household. A large body of literature has shown that alcohol use can have severe and unpredictable situational consequences (i.e. intoxicated driving or physical abuse).^34-36 The gap between caregiver reports of alcohol use and concerning use suggests that caregivers are comfortable reporting the level of alcohol use among family/household members but may not be aware of or able to identify problematic alcohol use or alcohol use that is perceived to be negatively impacting family functioning. This presents an opportunity for pediatricians to provide anticipatory guidance to caregivers regarding alcohol use in family/household members.

While most caregivers in this study reported that they trust and feel supported by their child’s pediatrician and the pediatricians in their clinic, there were differences in caregiver trust in pediatricians based upon substance use and concerns regarding substance use in their family/household. Specifically, we found that caregivers who reported concerns about substance use in their families/households were significantly less likely to report trust in their pediatrician and feeling supported by their pediatrician. Trust represents a central component of the patient-healthcare provider relationship and is an important consideration for pediatric healthcare providers working with adolescents and families who screen positive for SUD.^37,38 Previous research has found that discussions about substance use was associated with higher maternal ratings of the parent–provider relationship.²³ Improving caregiver trust in a child’s pediatrician may represent an intervention target and increase caregiver’s openness to receiving and following anticipatory guidance, which could potentially predict better parenting practices.

While routine screening for adolescent substance use has become widely adopted by pediatricians, screening for substance use in family/household members is far less common. Consensus statements from multiple organizations recommend that screening for family history of SUD be considered integral to existing prevention strategies.^12,39,40 From the earliest engagement with a family, pediatric providers have the opportunity to assess history of family substance use and substance use disorders. Annual well child visits provide an ideal opportunity to assess the home environment. Applying a universal screening approach removes the stigma for patients and families. However, opportunities for discussion may also arise if families raise concerns about their home environment at other times. Findings from this study should help to alleviate the concern of offending caregivers with routine screening for substance use in the household. Parents and other caregivers in this study reported a high level of acceptability around assessing their child’s environment for substance use and concerns regarding substance use as part of their child’s check-ups (or annual physical appointments). Pediatricians are experts at communicating with parents respectfully in order to maximize the health of their patients. As is done with many other health conditions (e.g. obesity, heart disease), universal screening for family history as well as the current family environment (i.e. diet, nutrition, exercise habits) supports optimal health for the child and can prevent a subsequent generation of disease.

When substance use in the family/household is identified, pediatricians must be prepared to support families in a caring manner, validate their concerns, educate about medical concerns, and provide resources and plans for follow up.⁴⁰ As children from families with substance use disorders are at greater risk for health problems, maltreatment, and substance use disorders ⁴¹, at a minimum, having identified a patient as coming from an environment with substance use and/or SUD allows the pediatrician to view the health care needs of this child from a substance-informed lens. Providing substance-informed care increases the ability to prevent and/or minimize harms associated with addiction in the family, either by delivering prevention messages, intervening early in the development of substance misuse among their patients, or serving as a portal to existing resources for parents and other members of the family/household. Resources could include selective substance use prevention programs that target individuals with defined risk factors, such as children coming from a family experiencing addiction.⁴² In addition, a provider can refer the child and family members to family-focused prevention programs, education, and recovery support. While pediatric providers can serve a critical role in identifying concerning substance use in the family/household, they are not expected to manage or treat the problem in isolation. Providers can consult with and refer to addiction specialists when they identify concerning substance use through routine screening.⁴³ One study found that the majority of families who received referrals to address health-related social problems contacted the recommended agencies.⁴⁴ Taking a multi-generation approach recognizes that promoting health of the parent or guardian is health promotion for the child.⁴⁵

While this study fills important gaps in the literature, our findings must be viewed in the light of several limitations. First, based upon the cross-sectional nature of this study, we cannot make causal inferences regarding the relationship between family substance use and caregiver’s reported trust in the pediatrician. Questions about family/household substance use did not distinguish between use by the caregiver taking the survey or other members of the household; this could have impacted the estimates of concerning substance use in households. This was a convenience sample of caregivers from only two clinics; however, these findings may generalize to other urban clinics serving economically disadvantaged children. One strength of this study was that it recruited from two urban pediatric outpatient settings, both serving children from low-income communities, a population underrepresented in the literature.

The need to incorporate substance use screening and preventive interventions that strengthen families and maximize the health potential and wellbeing of children and adolescents is more essential now than ever with the continued epidemic of opioid use along with the emergence of new laws and policies around marijuana use. Findings from this study highlight the acceptability of caregiver substance use screening by pediatricians. Differing levels of trust in pediatricians by family substance use status suggests the need for improved training in substance use communication and that interventions targeting caregiver trust in pediatricians may improve health outcomes for families affected by substance use.