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. Author manuscript; available in PMC: 2021 Apr 1.
Published in final edited form as: J Fam Psychol. 2019 Nov 21;34(3):342–352. doi: 10.1037/fam0000609

Lifetime Caregiver Strain among Mothers of Adolescents and Young Adults with Attention-Deficit/Hyperactivity Disorder

Dara E Babinski 1, Jessica Robb Mazzant 2, Brittany M Merrill 2, Daniel A Waschbusch 1, Margaret H Sibley 3, Elizabeth M Gnagy 2, Brooke SG Molina 4, William E Pelham Jr 2
PMCID: PMC7102920  NIHMSID: NIHMS1064301  PMID: 31750692

Abstract

The lifetime maternal caregiver strain (CS) associated with raising a child with attention-deficit/hyperactivity disorder (ADHD) into adolescence and young adulthood was examined in the Pittsburgh ADHD Longitudinal Study (PALS), a longitudinal study of individuals diagnosed with ADHD in childhood and recontacted in adolescence and young adulthood for yearly follow-up. Mothers of adolescents/young adults with (n=364, 89.6% male; Mage=19.79) and without childhood ADHD (n=240, 88.8% male; Mage=18.97) rated their lifetime maternal CS at Wave 3. Adolescent/young adult (AYA) ADHD and ODD severity measured at Wave 1, AYA delinquency measured at Wave 2, and school disciplinary actions combined from Waves 1 and 2 were explored as mediators of the association between childhood ADHD and lifetime maternal CS at Wave 3 using path analysis. AYA gender and age, parental marital status, maternal depression and ADHD, and highest parental education were included as covariates. Greater lifetime CS was reported among mothers of adolescents/young adults with versus without childhood ADHD. In the mediation model, direct effects of childhood ADHD on AYA ADHD and ODD severity, delinquency, and school discipline problems emerged, and direct effects of AYA ODD severity, delinquency, and school discipline problems on lifetime CS emerged. AYA ODD, delinquency, and school discipline mediated the association between childhood ADHD and lifetime maternal CS. These findings extend research on childhood ADHD to identify AYA sequelae contributing to maternal CS. Future research on the transaction between AYA functional impairment and maternal CS across the transition from adolescence into adulthood is needed to clarify opportunities for intervention.

Keywords: ADHD, caregiver strain, adolescence, young adulthood, maternal stress

Parenting a child with Attention-Deficit/Hyperactivity Disorder (ADHD) is associated with caregiver strain (CS) that most often is shouldered by mothers (Bussing et al., 2003; Johnston & Chronis-Tuscano, 2015). Mothers of children with ADHD typically bear the responsibility of initiating and maintaining treatment and advocating for their child, while also incurring additional costs, such as work loss (Birnbaum et al., 2005) and marital difficulty (Wymbs et al., 2008) related to their child’s ADHD (Johnston & Chronis-Tuscano, 2015). Substantial research on parenting a child with ADHD has demonstrated that maternal CS is associated with poor child, parent, and family outcomes, as well as negative child treatment outcomes (Brannan, Heflinger, & Foster, 2003; Theule, Wiener, Tannock, & Jenkins, 2013). In contrast, very little research has examined the lifetime maternal CS associated with raising a child with ADHD into adolescence and young adulthood. ADHD and its functional sequelae persist into adolescence and young adulthood for the majority of youth with ADHD (Altszuler et al., 2016; Biederman, Petty, Evans, Small & Faraone, 2010; Hechtman et al., 2016; Kuriyan et al., 2013; Sibley et al., 2012) and it may be that mothers of adolescents and young adults with ADHD continue to experience high levels of strain despite decreased need for immediate supervision. Maternal functioning is critical to promoting positive long-term outcomes for youth with ADHD (Gordon & Hinshaw, 2017; Walther et al., 2012), and maternal CS may limit mothers’ capacity to perform normative parenting duties into adolescence and adulthood, such as developmentally appropriate monitoring of offspring behavior and seeking or facilitating treatment for their adolescent or young adult with ADHD. Therefore, attention to examining lifetime maternal CS is important in the long-term outcomes of youth with ADHD.

Emerging studies show that mothers of adolescents and young adults with ADHD experience greater CS compared to mothers of adolescents and young adults without ADHD (Altszuler et al., 2016; Babinski et al., 2016; Gordon & Hinshaw, 2017; Wiener, Biondoc, Grimbos, & Herbert, 2016). Some of this work has shown that the persistence of ADHD is associated with greater maternal stress (Wiener et al., 2016). Yet, not all youth with ADHD continue to experience persistent ADHD symptoms into adolescence and young adulthood, and it is not uncommon for some symptoms of ADHD, particularly hyperactive/impulsive symptoms, to decrease (Sibley et al., 2012). Those youth who continue to experience high levels of ADHD symptoms may create relatively more difficulties for mothers than youth whose ADHD symptoms desist. The persistence of ADHD has also been shown to be associated with additional youth problems, including school difficulties (Kuriyan et al., 2013), delinquent behavior (Sibley et al., 2011), and overall impairment (Owens, Zalecki, Gillette, & Hinshaw, 2017), which may create considerable strain on mothers. Indeed, there may be substantial heterogeneity in the long-term CS associated with raising a child with ADHD (Gordon & Hinshaw, 2017; Wiener et al., 2016). Therefore, identifying additional factors linked to high levels of lifetime CS is important.

A number of parent and family characteristics contribute to CS, and these difficulties often co-occur. It is estimated that nearly half of all mothers of youth with ADHD have a history of depression, which is associated with high levels of CS (Johnston & Chronis-Tuscano, 2015; Theule et al., 2013). In addition, as many as 25% of mothers have a diagnosis of ADHD themselves, which is also associated with CS (Johnston & Chronis-Tuscano et al., 2015). As ADHD is associated with academic underachievement, mothers with ADHD may obtain lower levels of education (DuPaul & Langberg, 2015), limiting occupational options and financial stability. Moreover, parents of youth with ADHD are at least three times more likely than parents of youth without ADHD to be separated or divorced (Johnston & Chronis-Tuscano, 2015), potentially presenting even more financial strain related to single parenthood.

There is also some evidence that youth factors, such as gender, contribute to CS. Meta-analytic evidence shows that parents of boys with ADHD report greater CS compared to parents of girls with the disorder (Theule et al., 2013), presumably due to the higher levels of disruptive behavior identified among boys versus girls. Although it is clear that CS is determined by multiple factors, negative child behavior, particularly oppositional and defiant behavior, has consistently been shown to strain parents more than other parent or family characteristics (Bussing et al., 2003; Frank, Roubal, Breitzer, & Godin, 2017; Johnston & Chronis-Tuscano, 2015). Approximately 40 to 60% of clinically referred children with ADHD have a diagnosis of oppositional defiant disorder (ODD; Waschbusch, 2002), and ODD may be appropriately viewed as an extension of ADHD (Patterson, DeGarmo, & Knutson, 2000). ODD associated impairments continue into adolescence and young adulthood for many youth with ADHD (Lahey et al., 2016) and may also contribute to lifetime CS. Emerging research focused on stress among mothers of adolescents with ADHD shows that, similar to childhood studies, ADHD comorbid with ODD is associated with more maternal stress than ADHD alone (Wiener et al., 2016). Interestingly, Evans and colleagues (2009) found that adolescent oppositional behavior and maternal CS were more strongly associated at the end compared to the beginning of the school year, suggesting that the persistence of oppositional behavior may be associated with increases in CS over time. Adolescence is a time of high conflict in parent-adolescent relationships (Steinberg, 2014), especially for youth with ADHD (Babinski et al., 2016; Wiener et al., 2016). Thus, it may well be that ODD symptoms during adolescence and young adulthood present particular burden to mothers over time.

Delinquent behavior in adolescence and young adulthood may also contribute to lifetime maternal CS among youth with ADHD. ADHD and ODD are both associated with earlier and more severe engagement in delinquent behavior (Byrd, Loeber, & Pardini, 2012; Sibley et al., 2011), yet delinquent behavior within ADHD may further exacerbate the CS experienced by mothers of adolescents and young adults with ADHD. Delinquency increases and peaks in adolescence (Byrd et al., 2012; Loeber & Stallings, 2011), and some research shows that mothers of youth engaging in delinquent behavior report elevated levels of strain, including anger toward their child, hopelessness and fear about their child’s future, and feelings of exasperation and inadequacy as a parent, particularly difficulties monitoring their child (Bradshaw, Glaser, Calhoun, & Bates, 2006; Calhoun, Glaser, Peiper, & Carr, 2015). In addition, they may also experience strain due to interactions with the juvenile justice system, such as having to miss work to take their offspring to court or paying legal fees and fines.

School disciplinary problems experienced by youth with ADHD, in the form of detentions, suspensions, and expulsions, may also incrementally contribute to lifetime maternal CS above and beyond ODD and delinquency. On average, eight disciplinary incidents, including times sent to the principal’s or guidance counselor’s office, verbal warnings, written warnings, and detentions, are reported for youth with ADHD from kindergarten through twelfth grade compared to less than one for youth without ADHD (Robb et al., 2011). In addition, as many as 46% of children with ADHD are suspended from school during their school career (Barkley, 2015), and school disciplinary problems often require parents to interact with the school system, advocate for their child, and take time off of work to attend to these difficulties at school. Extant research on school problems and maternal stress has focused on elementary school-aged children (e.g., Frank et al., 2017), although the cumulative maternal CS associated with lifetime school disciplinary actions may be substantially greater than CS reported in childhood. School disciplinary problems often worsen over time (Barkley, 2015), and the consequences of these school problems are often more serious in adolescence and young adulthood. Mothers may be strained by worry about the future as school problems may lead to school dropout and further financial dependence on parents (Altszuler et al., 2016; Kuriyan et al., 2013).

The goal of the current study is to examine the lifetime maternal CS associated with raising a child with ADHD through adolescence/young adulthood in the Pittsburgh ADHD Longitudinal Study (PALS). This study includes individuals diagnosed with and treated for ADHD in childhood (baseline) and recontacted in adolescence and young adulthood for yearly follow-up visits. Adolescents and young adults without ADHD who were demographically similar to participants with ADHD were also recruited into the follow-up study. In the current study, data for adolescents/young adults with and without ADHD from the first three follow-up waves were used. First, lifetime maternal CS measured at follow-up Wave 3 was compared among mothers of adolescents/young adults with and without ADHD. Second, four indicators of adolescent/young adult (AYA) functioning, including Wave 1 ADHD severity, Wave 1 ODD severity, Wave 2 delinquent behavior, and school disciplinary actions measured in Waves 1 and 2, were considered simultaneously as mediators of the relation between childhood ADHD and lifetime maternal CS. Based on the large literature in childhood showing the pervasive effects of ADHD on CS and mounting evidence pointing to the continued problems of youth with ADHD and their families into adolescence and young adulthood (Johnston & Chronis-Tuscano, 2015), it was hypothesized that lifetime CS would be greater among mothers of offspring with versus without childhood ADHD. Based on accumulating research showing that childhood ADHD persists into adolescence and young adulthood (Biederman et al., 2010; Sibley et al., 2012) and is associated with additional difficulties including ODD, delinquent behavior, and school discipline problems (Barkley, 2015; Lahey et al., 2016), it was also hypothesized that childhood ADHD would predict ADHD and ODD severity, delinquency, and school discipline in adolescence and young adulthood. In addition, it was hypothesized that AYA ADHD severity, ODD severity, delinquent behavior, and school disciplinary actions would predict lifetime maternal CS and mediate the association between childhood ADHD and lifetime maternal CS.

Method

Participants

Participants were mothers of adolescents and young adults from PALS. PALS is a prospective longitudinal study of 364 adolescents and young adults who were diagnosed with DSM-III-R or DSM-IV ADHD in childhood (baseline) at the Western Psychiatric Institute and Clinic (WPIC) in Pittsburgh, PA from 1987 to 1996, and 240 non-ADHD participants, recruited from the surrounding area between 1999 and 2001 for their demographic similarity (i.e. age within one year, ethnicity, and parental education) to the ADHD group. Demographic characteristics are presented in Table 1.

Table 1.

Sample Demographic Characteristics

ADHD n=364 Comparison n=240
AYA Demographics
 Gender (% male) 89.6% 88.8%
 Age at Wave 3 follow-up, M (SD) 19.79 (3.35) 18.97 (3.06)
 Race/Ethnicity, n (%)
  White (not Hispanic) 294 (80.8%) 203 (84.6%)
  Black or African American 42 (11.5%) 22 (9.2%)
  Hispanic 3 (.8%) 2 (.8%)
  Other race 25 (6.8%) 13 (5.4%)
Parental Demographics
  Maternal age, M (SD) 48.1 (6.2) 48.1 (5.3)
  Marital status (% single parent) 34.1% 23.8%*
 Highest parent education, n (%)
  Partial High School 2 (.6%) 1 (.4%)
  High School graduate 43 (13.5%) 34 (15.2%)
  Technical College, Partial College, or Associate’s 138 (43.4%) 73 (32.7%)
  College or University graduate 85 (26.7%) 52 (23.3%)
  Graduate training 50 (15.7%) 63 (28.3%)
 Income, M (SD) $62,959 (47, 971) $76,091 (58,140)**
  Median Income $55,000 $64,500**
 Maternal lifetime depression at Wave 1, n (%)
  No episodes 217 (59.6%) 211 (87.9%)
  Single episode 65 (17.9%) 28 (11.7%)
  Multiple episodes 82 (22.5%) 1 (.4%)
 Maternal ADHD (%) 50 (15.29%) 11 (4.72%)
 AYA ADHD severity 1.48 (.78) .64 (.45)***
 AYA ODD severity 1.41 (.82) .52 (.46)***
 AYA Delinquency 2.60 (1.40) 2.08 (1.19)***
 AYA School discipline 2.07 (1.05) .83 (.90)***
 Lifetime Maternal CS 2.77 (.80) 1.56 (.57)*
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Note. AYA=adolescent/young adult. AYA ADHD and ODD severity were measured at Wave 1. AYA Delinquency was measured at Wave 2. AYA school discipline was measured using combined ratings from Waves 1 and 2. N ranged from 327 to 364 and from 229 to 240 for ADHD and comparison, respectively, (other than income which was only available for 291 ADHD and 203 comparison families).

*

p<.05,

**

p<.01,

***

p<.001

ADHD group.

In childhood (baseline), all children with ADHD participated in the Summer Treatment Program (STP), an eight week intervention that included behavioral modification, parent training, and psychoactive medication trials where indicated. Of 516 eligible STP participants, 493 were re-contacted, and 364 were interviewed. Diagnostic information was collected at initial referral to the clinic in childhood using parent and teacher DSM-III-R and DSM-IV symptom ratings scales (Disruptive Behavior Disorders Rating Scale [DBD]; Pelham, Gnagy, Greenslade, & Milich, 1992) and a semi-structured diagnostic interview administered to parents by a Ph.D. level clinician, which consisted of the DSM-III-R or DSM-IV descriptors for ADHD, ODD, and CD with supplemental probe questions regarding situational and severity factors. Following DSM guidelines, diagnoses of ADHD, ODD, and CD were made if a sufficient number of symptoms were endorsed (considering information from both parents and teachers). Two Ph.D. level clinicians independently reviewed all ratings and interviews to confirm diagnoses and when disagreement occurred, a third clinician reviewed the file and the majority decision was used. Exclusion criteria (i.e., full-scale IQ<80, a history of seizures or other neurological problems, and/or a history of pervasive developmental disorder, schizophrenia, or other psychotic or organic mental disorders) were also assessed at baseline.

Youth with ADHD were recruited for their first follow-up interview as adolescents or as young adults (11 to 28 years of age, 99% falling between 11 and 25), and were admitted on a rolling basis between the years 1999-2003. At the time of the first follow-up interview (Wave 1), an average of 8.35 years had elapsed since the childhood baseline assessment (age at Wave 1: M=17.74 SD=3.39; at Wave 2: M=18.78, SD=3.40; at Wave 3: M=19.79, SD=3.35). Participants were compared with the eligible individuals who did not enroll in the follow-up study on demographic (i.e., age at first treatment, race, parental education level, and marital status) and diagnostic (i.e., parent and teacher ratings of ADHD and related symptomatology) variables collected at baseline. Only one of 14 comparisons was statistically significant at the p<.05 significance level. Participants had a slightly lower average CD symptom rating (participants M = 0.43, non-participants M = 0.53) on a zero to three scale.

Comparison (non-ADHD) group.

Adolescents and young adults without ADHD were recruited from the same region as individuals in the ADHD group through several large pediatric practices (40.8%), advertisements in local newspapers and the university hospital staff newsletter (27.5%), local universities and colleges (20.8%), and other methods (e.g., area public schools, word of mouth). Recruitment was on a rolling basis which lagged three months behind enrollment of the ADHD group to facilitate efforts to obtain demographic similarity. A phone screen administered to parents gathered demographic information, history of diagnosis and treatment for ADHD and other behavior problems, presence of exclusionary criteria as previously listed, and a checklist of ADHD symptoms. Young adults (age 18+) also provided self-report. ADHD symptoms were counted as present if reported by either the parent or the young adult. Individuals who met lifetime criteria for ADHD, currently or historically, were excluded.

If a potential participant passed the initial phone screen, senior research staff members met to determine whether the participant was demographically appropriate for the study (i.e., his/her enrollment increased the comparison group’s demographic similarity to the group of youth with ADHD). Comparison participants were selected based on four demographic characteristics: age, gender, race, and parent education level. Age of participants in the non-ADHD group was: M=17.17 SD=3.17 at Wave 1; M=18.07, SD=3.16 at Wave 2; and M=18.97, SD=3.06 at Wave 3. Individuals with and without ADHD were equivalent on age, gender, race, and parent education, but an unsuccessful attempt was made to obtain equivalence on the proportion of married parents, which was lower among participants with versus without ADHD.

Procedure

The University of Pittsburgh Institutional Review Board reviewed and approved all procedures. During the follow-up interviews, participants and their parents were interviewed and completed self-report paper and pencil and computerized measures. In cases where distance prevented participant travel to the clinic, information was collected through mail and telephone correspondence. All informants were ensured confidentiality with the exceptions of evidence of suicidality and child abuse. Families were paid for completing the follow-up interviews. Retention was high across the 3 waves, with 92% of ADHD and 98% of control participants retained. Four participants were deceased by wave 3, 9 were lost to follow-up and 21 refused further participation. Refusal was due to time concerns (not wanting to take the time to complete the measures and assessments). Data for the current study are taken from the first three annual follow-up interviews (Waves 1-3). In order to establish temporal precedence for longitudinal analysis, ADHD status was based upon ADHD diagnosis in childhood, AYA variables explored as mediators of the association between childhood ADHD and lifetime maternal CS were assessed in follow-up Waves 1 and/or 2, and lifetime maternal CS was assessed in follow-up Wave 3.

Measures

Participant characteristics.

Mothers completed a demographic questionnaire about their own age, marital status, level of education, income, and mental health history as well as their child’s gender, age, and race/ethnicity. Information was updated at each follow-up interview, with information collected at the third follow-up interview used in the analyses (Table 1).

Maternal depression.

Lifetime maternal depression was assessed using the Structured Clinical Interview for DSM-IV, Nonpatient Edition (SCID-NP; First, Spitzer, Gibbon & Williams, 1996) in follow-up Wave 1. Inter-rater agreement for diagnoses was conducted by comparing independent ratings of tape-recorded interviews of 137 cases, sampled across young adult and parents within the study. Kappa coefficients ranged from 0.47-0.70 for depressive disorders (Babinski et al., 2016). The distribution of lifetime depressive episodes was highly skewed (10.87) and had a kurtosis statistic exceeding 3, and remained abnormally distributed even after log transformations were performed. The variable was recoded (0=none, 1=single episode, 2=multiple episodes) and then did not exceed skew and kurtosis criteria.

Maternal ADHD.

Lifetime maternal ADHD was assigned if mothers met at least one of the following criteria: (1) six or more childhood symptoms of hyperactivity/impulsivity or inattention on the Disruptive Behavior Disorders Rating Scale (Pelham et al. 1992), assessed retrospectively in follow-up Wave 1; (2) four or more current symptoms of hyperactivity/impulsivity or inattention (Barkley, unpublished measure) assessed in follow-up Wave 1; or (3) a self-reported lifetime diagnosis of ADHD.

AYA ADHD and ODD symptom severity.

In the first adolescent/young adult follow-up wave (Wave 1), parent and teacher ratings on the DBD were collected for individuals younger than 18 years old in the ADHD and comparison groups to reflect current ADHD and ODD severity. Items on the DBD assessed the frequency of ADHD and ODD symptoms using a 4-point Likert scale from 0 (Not at All) to 3 (Very Much). The highest reported symptom levels endorsed by either mother or teacher were used to calculate a severity score for ADHD (Pelham, Fabiano, & Massetti, 2005). For individuals who were 18 years old or older at Wave 1, the Adult ADHD Rating Scale was administered to participants and their parents (provided by R. Barkley before publication; Barkley 2011). This scale is comparable to the DBD and includes 18 items (0 = never to 3 = very often) corresponding to the DSM-IV-TR symptoms of ADHD (Barkley et al. 2008; Kessler et al. 2010). The highest parent or self-rating was used to calculate an average ADHD symptom severity score (Sibley et al., 2012). To assess AYA ODD symptom severity, only maternal ratings were collected to examine the impact of ODD symptom severity on maternal functioning specifically. For individuals younger than 18, the DBD rating scale was used, and for individuals 18 and older, the same DSM symptom scale used to assess ADHD symptom severity (Barkley, 2008) was used.

Delinquency.

AYA delinquent behavior was assessed using the Self-Reported Delinquency questionnaire (SRD; Elliott, Huizinga, & Ageton, 1985). Adolescents/young adults and mothers provided ratings on the SRD and delinquent acts committed were coded for overall severity: 1= no delinquency or minor delinquency only at home (e.g., theft of less than $5 or vandalism); 2 = minor delinquency outside of the home (e.g., vandalism with damages less than $100, avoiding payment, theft of less than $5); 3 = moderately serious delinquency (e.g., credit card fraud, theft of $5 or more, arson with damages over $100, joyriding); 4 = serious delinquency (e.g., breaking and entering, vehicle theft, attacking someone with a weapon with the intent to seriously hurt or kill, rape); and 5 = engagement in two or more different level 4 offenses. The SRD was administered for the first time in the second follow-up wave (Wave 2) to assess delinquent behavior up to that time point. The highest rating endorsed by either maternal or adolescent/young adult self-rating at Wave 2 was used in analyses. These coding procedures were also used by Sibley et al. (2011).

School disciplinary problems.

The Education History Questionnaire was adapted from measures used in the PAARC (Pittsburgh Adolescent Alcohol Research Center) and CEDAR (Center for Education and Drug Abuse Research; Tarter, 1997) studies to assess educational information from kindergarten through college. Parents reported retrospectively (supplemented by youth-report if parents were unavailable) on the school(s) attended, special education placement, disciplinary referrals, grade retention, and receipt of services in Wave 1, and this measure was updated at every follow-up wave with the most recent information. For this study, the yearly average rate of disciplinary actions (i.e., expulsion, out of school suspension, in school suspension, being sent to the principal’s office, and detention) was used from kindergarten through twelfth grade. For youth who had not yet completed twelfth grade by Wave 2, data reflect the rate of disciplinary actions reported up to Wave 2. The rate of school disciplinary actions was skewed and leptokurtic, so an ordinal variable which did not exceed skew and kurtosis criteria was created (i.e., 0=1 or fewer times per year, 1=every several months to once per month, 2=once to twice per week, 3=greater than five per month).

Caregiver strain.

The Caregiver Strain Questionnaire (CGSQ; Brannan, Heflinger, & Bickman, 1997) is a 21-item parent-report questionnaire that assesses the impact of caring for a child with emotional and/or behavioral problems. The original format of the CGSQ (Brannan et al., 1997) asks parents to consider strain over the past six months. In the current study, the CGSQ was given only during Wave 3 and the scale was modified such that mothers were asked to retrospectively report on the lifetime strain of raising their child up to that time. The CGSQ measures three dimensions of CS (i.e., objective, subjective internalized, and subjective externalized), supported by exploratory and confirmatory factor analysis (Brannan et al., 1997). Objective strain includes negative occurrences resulting from caring for the child (e.g., disruption of family, demands on time, and financial strain. Subjective internalized strain includes feelings internalized by the caregiver related to caring for a child (e.g., worrying about the child’s future, feeling guilty, and feeling tired and strained). Subjective externalized strain includes negative feelings directed towards the offspring (e.g., resentment, embarrassment, and anger). Items are scored from 1 (not at all) to 5 (very much a problem). In the present sample, these dimensions were highly correlated (.70-.96), and thus only the total score (Cronbach’s alpha=.93) was used for analyses.

Planned Analyses

Childhood ADHD and lifetime CS.

To examine group difference between the ADHD and non-ADHD groups in lifetime maternal CS measured at Wave 3, a regression analysis was conducted in MPlus v7.2. Child gender, parent marital status, maternal depression, maternal ADHD, highest parent education, and AYA age at Wave 3 were included as covariates to examine differences in lifetime maternal CS related to childhood ADHD diagnosis beyond these often co-occurring stressors.

Mediators of the relationship between childhood ADHD and lifetime CS.

Next, AYA ADHD severity and ODD severity (measured in Wave 1), AYA delinquency (measured in Wave 2), and school discipline problems (measured in Waves 1 and 2) were examined as mediators of the association between childhood ADHD and lifetime maternal CS (collected at Wave 3). Path analysis in MPlus v7.2 with 1000 bootstraps and maximum likelihood estimation (Preacher & Hayes, 2004) was used. The same covariates were included from the initial analysis examining childhood ADHD and lifetime CS. Lifetime maternal CS was regressed on childhood ADHD diagnosis, the four mediators, and the six covariates. To assess fit, we examined the chi-square significance test, the root mean square of approximation (RMSEA), and the comparative fit index (CFI; McDonald & Ho, 2002). The chi-square test is a measure of overall goodness-of-fit with the null hypothesis being a perfectly fit model. Therefore, a non-significant chi-square indicates good model fit. However, chi-square is affected by sample size such that significant chi-square values are more often found in larger samples. Given our large sample (n = 604), we also examined the RMSEA with <.05 indicating good fit and <.08 indicating acceptable model fit. For the CFI, the cut off for good fit is .9 with values closer to 1 indicating better model fit. We also examined modification indices in order to fit the model. Based on modification indices and model fit, all mediators in the model were allowed to correlate and the correlations between childhood ADHD status and maternal depression, maternal ADHD, marital status, and AYA age were estimated in the final model. Based on model fit indices, gender was an exogenous variable and was not free to correlate with covariates in the final model.

Results

Childhood ADHD and Lifetime CS

Controlling for covariates, mothers of participants with childhood ADHD reported greater lifetime CS compared to mothers of adolescents/young adults without childhood ADHD, b=1.10, SE=.07, p< 001. Maternal depression measured at Wave 1 significantly predicted lifetime CS, b=.20, SE=.05, p<.001. Child gender, parent marital status, highest parent education, maternal ADHD, and offspring age were not significant predictors of lifetime CS, ps>.05.

Mediators of the Relationship between Childhood ADHD and Lifetime CS

The correlation matrix among mediator and outcome variables in the path analysis is presented in Table 2, and the specific direct and indirect effects, standard errors, and confidence intervals are displayed in Table 3. The final model, including AYA variables (Figure 1), fit the data well, χ2(6)=9.85, p>=.13, RMSEA=.03, CFI=.99. Direct effects indicated that childhood ADHD significantly predicted AYA ADHD and ODD severity, school discipline problems, delinquency, and lifetime CS. AYA ODD severity, delinquency, and school discipline, but not AYA ADHD severity significantly predicted lifetime maternal CS.

Table 2.

Estimated Correlations among Covariate, Mediator, and Outcome Variables from Path Analysis

1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12.
1. Childhood ADHD diagnosisa 1
2. AYA gendera 0 1
3. Parent marital statusa −.110 0 1
4. Maternal depressiona .342 0 −.109 1
5. Maternal ADHDa .162 0 −.071 .215 1
6. Highest parent educationa −.069 0 −.025 −.029 −.111 1
7. AYA age at Wave 3a .113 0 .025 −.077 .032 −.077 1
8. AYA ADHD severityb .525 −.010 −.076 .347 .166 −.023 −.239 1
9. AYA ODD severityb .493 −.025 −.036 .330 .131 −.054 −.238 .758 1
10. AYA delinquencyb .185 −.162 −.099 .126 .064 −.025 .238 .209 .224 1
11. AYA school disciplineb .522 −.116 −.051 .264 .054 −.034 .052 .405 .404 .317 1
12. Lifetime maternal CSc .629 −.051 −.088 .366 .154 .018 .057 .571 .623 .343 .545 1
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Note. AYA=adolescent/young adult. Waves 1 through 3 represent functioning in adolescence/young adulthood. AYA ADHD and ODD severity were measured at Wave 1. AYA Delinquency was measured at Wave 2. AYA school discipline was measured using combined ratings from Waves 1 and 2. Childhood ADHD diagnosis was coded as 0 = non-ADHD comparison, 1 = ADHD. Gender was coded as 1 = male, 2 = female. Marital status was coded as 0 = no parenting partner, 1 = parenting partner. Maternal ADHD was coded as 0 = did not meet criteria for ADHD in lifetime, 1 = met criteria for ADHD in lifetime. Based on model fit indices, gender was an exogenous variable and was not free to correlate with covariates in the final model.

a

Covariate.

b

Mediator.

c

Outcome.

Table 3.

Direct and Indirect Effects with Bootstrapped 95% Confidence Intervals (CI) Based on the Final Model

Estimate SE 95% CI
Direct Effects
 CS on childhood ADHD diagnosis .520*** .086 .352, .689
 AYA ADHD severity on childhood ADHD diagnosis .798*** .051 .697, .899
 AYA ODD severity on childhood ADHD diagnosis .793*** .058 .679, .908
 AYA Delinquency on childhood ADHD diagnosis .321** .113 .100, .541
 AYA School Discipline on childhood ADHD diagnosis 1.169*** .092 .988, 1.351
 Lifetime maternal CS on AYA ADHD severity .083 .068 −.050, .216
 Lifetime maternal CS on AYA ODD severity .375*** .069 .240, .510
 Lifetime maternal CS on AYA delinquency .076** .026 .025, .126
 Lifetime maternal CS on AYA school discipline .139*** .034 .071, .206
Indirect Effects
 AYA ADHD severity .066 .054 −.040, .173
 AYA ODD severity .297*** .059 .183, .412
 AYA Delinquency .024* .012 .001, .048
 AYA School Discipline .162*** .042 .079, .245
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Note. CS = lifetime caregiver strain measured at Wave 3. AYA=adolescent/young adult. Waves 1 through 3 represent functioning in adolescence/young adulthood. AYA ADHD and ODD severity were measured at Wave 1. AYA Delinquency was measured at Wave 2. AYA school discipline was measured using combined ratings from Waves 1 and 2. Covariates (i.e., child gender, parental marital status, maternal depression, maternal ADHD, highest parent education, and AYA age at Wave 3) were included in the final model and are not shown here.

*

p<.05;

**

p<.01;

***

p<.001.

Figure 1. Simultaneous Path Modeling Predicting Caregiver Strain.

Figure 1.

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Figure 1. The figure depicts the final model including the four mediator variables. Only significant paths are shown. Covariates (i.e., child gender, parental marital status, maternal depression, maternal ADHD, highest parent education, and AYA age at Wave 3) were included in the final model and are not shown here. *p<.05; **p<.01; ***p<.001. CS = lifetime caregiver strain measured at Wave 3. AYA=adolescent/young adult.

The total indirect effect from childhood ADHD to CS through mediators included was significant, b=.55, SE=.06, p<.001, 95% CI [.43, .67]. AYA ADHD severity was not a significant mediator. The relation between childhood ADHD and lifetime CS was significantly mediated by AYA ODD severity, school discipline problems, and delinquency. Specifically, childhood ADHD diagnosis significantly predicted increased AYA ODD symptom severity, discipline problems, and delinquency, which in turn predicted higher lifetime maternal CS.

Discussion

The goal of this study was to examine the lifetime maternal CS associated with raising a child with ADHD into adolescence/young adulthood and to investigate whether AYA functioning, namely, ADHD and ODD severity, delinquency, and school discipline, mediated the relation between childhood ADHD and lifetime maternal CS. Mothers of youth with versus without ADHD reported more lifetime CS. Further, childhood ADHD significantly predicted lifetime maternal CS, although this relation was also mediated by other aspects of functioning in adolescence and young adulthood. In the mediational model, accounting for highest parental education level, marital status, maternal depression and ADHD, youth age, and gender, childhood ADHD was significantly associated with AYA ADHD and ODD severity, delinquency, and school discipline problems, and AYA ODD, delinquency, and school discipline problems in turn contributed to greater lifetime maternal CS. AYA ODD severity, delinquency, and school problems significantly mediated the association between childhood ADHD and lifetime maternal CS. These findings are discussed herein.

The higher level of lifetime maternal CS among mothers of adolescents and young adults with versus without ADHD fits with much literature focused on stress in families of children with ADHD and an emerging literature focused on the stress associated with raising an adolescent/young adult with ADHD (Altszuler et al., 2016; Johnston & Chronis-Tuscano, 2015; Wiener et al., 2016). Interestingly, the level of lifetime CS documented among mothers of adolescents and young adults with ADHD in this study was generally similar to levels of CS documented among clinic-referred children with behavior problems (Accurso, Garland, Haine-Schlagel, Brookman-Frazee, & Baker-Ericzén, 2015; Tsai, Yeh, & Slymen, 2015), suggesting that the CS associated with raising a child with ADHD does not abate over time. Although we assessed lifetime CS retrospectively and were not able in the current work to examine changes in maternal CS over time, our findings contrast research that has emerged among non-referred youth (Putnik et al., 2010) as well as at least one prospective longitudinal study of girls with ADHD (Gordon & Hinshaw, 2017) showing that parent stress may decline over time, perhaps as parents become more acclimated with their parenting role (Gordon & Hinshaw, 2017; Putnik et al., 2010). However, our sample was comprised of more than 80% males, who are more likely than females to experience particularly stressful sequelae of ADHD, such as school disciplinary actions and involvement with police (e.g., Babinski et al., 2011; Kuriyan et al., 2013; Owens et al., 2017). It is likely that there is also substantial heterogeneity in the lifetime CS associated with raising a child with ADHD, and attention to parsing this heterogeneity helps to clarify which mothers of youth with ADHD are at greatest risk for high levels of lifetime CS.

While childhood ADHD was associated with AYA ADHD, and AYA ADHD was associated with maternal lifetime CS, AYA ADHD was not uniquely associated with lifetime maternal CS in the mediational model, even when using a comprehensive assessment of ADHD from more than one informant. Instead, childhood ADHD status continued to predict lifetime maternal CS in the mediation model. Given that persistent ADHD has been shown to be associated with more widespread functioning problems across multiple domains (Owens et al., 2017), we had expected that AYA ADHD severity would contribute to lifetime maternal CS in the context of other mediators. However, the absence of unique effects of AYA ADHD severity on lifetime maternal CS fits with existing research among mothers of children and adolescents with ADHD that suggests other factors, particularly ODD, contribute relatively more to lifetime maternal CS than ADHD (Evans, Sibley, & Serpell, 2009; Wiener et al., 2016). Indeed, in the current study, AYA ODD emerged as a significant predictor of lifetime maternal CS. Childhood ADHD was associated with AYA ODD, which was associated with lifetime CS, and AYA ODD severity mediated the association between childhood ADHD and lifetime maternal CS. It is possible the high correlation between AYA ADHD and ODD masked potential effects of AYA as a significant mediator in the model. As AYA ODD severity was rated only by mothers and not teachers, these findings suggest that ODD symptoms in the home setting, particularly argumentative and irritable behavior towards parents, are associated with substantial lifetime maternal CS (Wiener et al., 2016).

It was notable in the current study that childhood ADHD was associated with AYA delinquent behavior even when simultaneously considering co-occurring problems such as ODD that are often more clearly associated with delinquent behavior (Sibley et al., 2011). In addition, delinquency severity, measured comprehensively using parent and youth report, was a significant predictor of lifetime maternal CS, and AYA delinquency severity was a significant mediator of the association between childhood ADHD and lifetime maternal CS. Delinquent behavior in adolescence and early adulthood has been shown to set the foundation for increasing aggressive and violent behavior (Byrd et al., 2012), which in turn may cause maternal stress through interactions with the justice system and paying legal fines. Given that parenting stress increases the risk for life-course-persistent offending (Jolliffe, Farrington, Piquero, Loeber, & Hill, 2017), future research examining the transactional course of delinquent behavior and maternal CS beyond late adolescence and early adulthood is greatly needed.

School discipline problems also contributed to lifetime maternal CS and mediated the association between childhood ADHD and lifetime CS. School problems identified in youth with ADHD from kindergarten through high school have been shown to confer risk for negative long-term outcomes in a broad range of areas, including increasing externalizing problems, post-high school academic difficulties, and occupational functioning (Barkley, 2015; Kuriyan et al., 2013; Owens et al., 2017), and the current study demonstrates that these school disciplinary problems also predict lifetime maternal CS. Given that school disciplinary actions are primarily related to disruptive behavior in the classroom (Waschbusch, Breaux, & Babinski, 2018), these findings suggest that oppositional behavior at home (i.e., AYA ODD severity) and in the classroom setting (i.e., school discipline) add to maternal CS. Certainly, school disciplinary actions may demand that parents devote additional time from their day to talk with teachers and advocate for their child, which may be stressful. There is also some research that school disciplinary actions are implemented inconsistently (Skiba, Peterson, & Williams, 1997) and often for relatively minor offenses (Mendez & Knoff, 2003). Youth with ADHD may be particularly likely to develop a negative reputation from teachers and school staff through the years, which may increase the likelihood they will receive formal disciplinary actions, and subsequently add to maternal frustration and CS. In adolescence, youth with ADHD generally have less support from teachers, and may require high levels of maternal involvement in school to improve the school functioning of youth with ADHD (Sibley, Kuriyan, Evans, Waxmonsky, & Smith, 2014). However, high levels of maternal CS may impede consistent maternal involvement in school.

While ODD, delinquency, and school discipline problems are all related (DuPaul & Langberg, 2015), it was notable that each contributed unique variance in predicting lifetime maternal CS. This may suggest that there are multiple avenues to address the CS associated with raising a child with ADHD. For example, school-based treatment may reduce school discipline problems and therefore reduce maternal CS. Indeed, parent-adolescent intervention focused on improving skills important for school success among adolescents with ADHD, including organization, planning, and time management, has shown large reductions in CS (Sibley et al., 2016). At the same time, however, there is a relative dearth of evidence-based treatments that have been shown to meaningfully improve the long-term functioning of adolescents and young adults with ADHD, and very low rates of adherence to treatment have been reported (Evans, Owens, Wymbs, & Ray, 2018; Sibley et al., 2014). While these findings suggest that childhood ADHD and functional sequelae in adolescence and young adulthood predict lifetime CS, maternal stress has also been shown to increase adolescent and young adult functioning problems (Gordon & Hinshaw, 2017). Attention to the relationship among ADHD, functional impairments, and maternal strain over time is greatly needed, although our model fits with much research showing that youth difficulties exert relatively greater effects on maternal functioning compared to the effects of maternal functioning on youth difficulty (Johnston & Chronis-Tuscano, 2015). In the current study, because CS was assessed only at Wave 3, we cannot account for transactional relationships between adolescent and maternal functioning or individual differences in maternal lifetime CS trajectories. Interestingly, Evans and colleagues (2009) reported both increases and decreases in CS among mothers of adolescents with ADHD with increasing youth problems over the course of a school year, suggesting that some mothers may experience hope (i.e., a decrease in CS) while others may experience despair (i.e., worsening of CS) over time.

Limitations

Several additional limitations should be noted. The CGSQ was developed to assess CS among parents of youth with behavioral difficulties, and has not been validated for use with parents of youth without behavioral concerns. As the CGSQ was only administered at Wave 3, we were not able to control for prior levels of CS. Retrospective report was used to assess school disciplinary problems and delinquency, although comprehensive reports were collected from more than one informant, when possible. We employed a mediational model, wherein lifetime CS was assessed after AYA mediator variables, although lifetime CS reflects the accumulation of CS, and additional work is needed to further establish the temporal ordering of AYA difficulties and CS. All participants in the ADHD group received treatment in childhood. Thus, findings may not generalize to understanding lifetime CS among mothers of all adolescents and young adults with childhood ADHD. Other factors that may mitigate or exacerbate lifetime maternal CS, such as social support, treatment history, internalizing problems, and paternal psychopathology were not assessed, and we were limited in our ability to explore factors that may routinely vary such as maternal depression. Although age was included as a covariate and was not significantly associated with CS, the relatively broad age range may have masked more subtle developmental changes in lifetime CS. Future work may also benefit from examining how attaining certain developmental milestones in adolescence and young adulthood, such as going to college and moving out of the family household impact maternal CS. Despite these limitations, our findings highlight the substantial long-term burden of raising a child with ADHD and emphasize the importance of early, intensive, and continued intervention across settings to address the academic and behavioral difficulties of youth with ADHD as they age into adolescence and young adulthood.

Clinical Implications

Although it is clear that ADHD persists into adolescence and young adulthood for the majority of youth with ADHD (Biederman et al., 2010; Sibley et al., 2012), it was noteworthy that AYA ADHD was not predictive of lifetime CS, considering the effects of AYA ODD severity, delinquency, and school disciplinary problems. This suggests that it is childhood ADHD and the AYA functional sequelae associated with childhood ADHD rather than AYA ADHD symptoms that meaningfully contribute to lifetime maternal CS. Although stimulant medication is the most frequently used and studied intervention for adolescents and young adults with ADHD, and is associated with large to very large reductions in ADHD symptoms (Sibley et al., 2014), the absence of a significant effect of AYA ADHD symptoms on lifetime maternal CS suggests that medication treatment in adolescence and young adulthood may be insufficient to ameliorate the lifetime CS associated with raising a child with ADHD. Instead interventions that directly target the functional sequelae of childhood ADHD (e.g., school problems) may more directly improve maternal CS (Evans et al., 2009; Sibley et al., 2016).

Our work identified three important areas of AYA functioning that each contributed to explaining lifetime maternal CS. However, across the lifespan, adults with ADHD continue to experience substantial difficulties, including inconsistent employment and financial reliance on parents (Altszuler et al., 2016; Kuriyan et al., 2013). For example, parents of young adults with ADHD reported being twice as likely as parents of young adults without ADHD to provide financial support to their offspring, and young adults with ADHD were more likely to currently live with their parents or move back with their parents after living independently compared to young adults without ADHD (Altszuler et al., 2016). Thus, adults with ADHD continue to rely substantially on parents, primarily mothers, at a time when parents are reaching their own retirement age. Given that maternal CS increases risk for additional functional difficulties in youth with ADHD across the lifespan (Gordon & Hinshaw, 2017), future work examining maternal CS beyond adolescence and young adulthood is greatly needed. Furthermore, additional studies are needed to disentangle the effects of prolonged maternal CS on maternal mental health and how prolonged strain affects mental health treatment seeking for children and mothers.

Acknowledgments

This study was supported by grants DA12414, DA05605, from the National Institute on Drug Abuse and additionally, AA11873 from the National Institute of Alcohol Abuse and Alcoholism. Research was also supported in part by AA00202, AA08746, AA12342, AA0626, and grants from the National Institute on Mental Health (MH12010, MH4815, MH47390, MH45576, MH50467, MH53554, MH069614), the National Institute of Environmental Health Sciences (ES0515-08), and Institute of Education Sciences (IESLO3000665A, IESR324B060045). Data from this manuscript were previously presented at the 2009 biennial conference of the Society for Research on Child Development.

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