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Depressive Symptoms in Adults With Mild to Moderate Intellectual Disability and Their Relation to Maternal Well-Being

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Page 1: Depressive Symptoms in Adults With Mild to Moderate Intellectual Disability and Their Relation to Maternal Well-Being

Journal of Policy and Practice in Intellectual Disabilities Volume 3 Number 4 pp 229–237 December 2006

© 2006 International Association for the Scientific Study of Intellectual Disabilities and Blackwell Publishing, Inc.

Blackwell Publishing IncMalden, USAPPIJournal of Policy and Practice in Intellectual Disabilities1741-11222006 International Association for the Scientific Study of Intellectual Disabilities and Blackwell Publishing Ltd200634229237Original ArticleDepressive Symptoms and Maternal Well-BeingA. J. Esbensen et al.

Received December 20, 2005; accepted September 7, 2006Correspondence: Anna J. Esbensen, Waisman Center, University of Wisconsin-Madison, 1500 Highland Avenue, Madison, WI, 53705 USA. Tel: +1 608-263-5609; Fax: +1 608-265-4862; E-mail: [email protected]

Depressive Symptoms in Adults With Mild to Moderate Intellectual Disability and Their Relation to Maternal Well-BeingAnna J. Esbensen, Marsha Mailick Seltzer, and Jan S. GreenbergWaisman Center, University of Wisconsin-Madison, Madison, WI, USA

Abstract Little is known about the impact on the family of caring for an individual with both intellectual disability and a mental-health problem. We examined the relationship between depressive symptoms in adults with mild to moderate intellectual disabilityand concurrent maternal well-being as measured by depression, pessimism, subjective burden, and the mother’s perception of thequality of the relationship with her son or daughter. We also examined the extent to which the adult’s depressive symptoms predictedlater maternal well-being after controlling for behavior problems and identified covariates. Seventy-one interviews were conductedwith mothers regarding their own well-being and their children’s behavior problems as part of a larger longitudinal study of mothersmore than 55 years old caring for a coresiding adult son or daughter with intellectual disability. The adult with mild to moderateintellectual disability was interviewed about his or her depressive symptoms. The depressive symptoms of the adult with intellectualdisability were correlated with concurrent maternal depression, and were predictive of future maternal depression, pessimism, andsubjective burden. They also predict some measures of maternal well-being, and do so beyond what is predicted by behaviorproblems. These findings suggest that raising an adult child with a dual diagnosis may be more stressful than raising an adult childwith intellectual disability only.

Keywords: behavior problems, depressive symptoms, intellectual disability, mental health

INTRODUCTION

Co-occurring diagnoses of both intellectual disability and amental-health disorder, referred to as “dual diagnosis,” are asso-ciated with multiple challenges. Individuals with a dual diagnosisare reported to have increased behavior problems, are more likelyto be placed in a residential setting, and are clinically underserved(Borthwick-Duffy & Eyman, 1990; Bruininks, Hill, & Morreau,1988; Emerson, Moss, & Kiernan, 1999; Reiss, Levitan, &McNally, 1982). However, researchers have only just begun tofocus on the impact of a dual diagnosis on the family. With morethan 60% of adults with intellectual disability coresiding withtheir families (Fujiura, 1998), and with rates of dual diagnosisexceeding the rate of psychopathology among the general popu-lation (Clay & Thomas, 2005), important questions remain aboutthe impact of a dual diagnosis on family carers.

Preliminary hypotheses regarding the potential family impactof an adult child with a dual diagnosis can be gleaned from theextensive research that has examined the well-being of carers ofadults with either intellectual disability or mental illness. Mothersof coresiding adults with intellectual disability have been reportedto function comparably to age-matched noncaregiving peers(Seltzer, Krauss, Choi, & Hong, 1996). When mothers of adultswith intellectual disability have increased levels of caregiving bur-den or stressors, this is primarily due to behavior problems exhib-ited by an adult child (Miltiades & Pruchno, 2001; Orsmond,Seltzer, Krauss, & Hong, 2003; Pruchno, Patrick, & Burant, 1997;Seltzer, Greenberg, & Krauss, 1995). In addition, behavior prob-lems have been found significantly to predict increases in mater-nal subjective burden, depressive symptoms, and pessimism overa 6-year period (Orsmond et al., 2003).

In contrast, mothers of adults with mental illness report lesscaregiving gratification, more subjective burden, and higher lev-els of depressive symptoms than mothers of adults with intellec-tual disability (Greenberg, Seltzer, & Greenley, 1993; Seltzer et al.,1995). Again, the behavior problems exhibited by adults withmental illness play a strong role in predicting maternal well-being(Greenberg et al., 1993) and are negatively associated with mater-

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nal caregiving gratifications. In a somewhat different pattern offindings, one study comparing mothers with adult children withschizophrenia, Down syndrome, and autism revealed no differ-ences among groups on measures of depression or psychologicalwell-being (Greenberg, Seltzer, Krauss, Chou, & Hong, 2004).However, differences were reported on the quality of the relation-ship with the son or daughter, with mothers of adults with Downsyndrome reporting better relationships than the other twogroups.

The question remains unanswered regarding the impact ofcaring for an adult child with both mental-health problems andintellectual disability on maternal well-being. Research has begunto examine the well-being of parents of children with intellectualdisability and emotional or behavioral problems, who are consid-ered at risk for the development of a dual diagnosis. Parents ofchildren with intellectual disability and increased levels of emo-tional or behavioral problems generally report higher levels ofmental-health problems than parents of children with intellectualdisability and low levels of emotional or behavioral problems andthan parents of typically developing children (Tonge & Einfeld,2003), although discrepant findings have been reported (Hoare,Harris, Jackson, & Kerley, 1998). Among mothers of preschoolchildren with and without developmental delays, concurrentbehavior problems and changes in behavior problems over 1 yearwere associated with increasing maternal stress (Baker, Blacher,Crnic, & Edelbrock, 2002; Baker et al., 2003). In the Baker et al.research, the cognitive ability of the preschool child did notimpact the levels of maternal stress beyond that predicted bybehavior problems. As such, among very young children, it maysimply be the presence of emotional or behavioral problems thatcauses maternal stress, and is not additive (or interactive) withdevelopmental delay or reflective of a dual diagnosis. This idea issupported by Floyd and Gallagher (1997), who reported that thepresence of significant behavior problems in children with intel-lectual disability, chronic illness, or no disability was more impor-tant in determining maternal stress than was the diagnosticcategory. Extending this research from children to adults, McIn-tyre, Blacher, and Baker (2002) found that behavior problems andsymptoms of psychopathology in young adults with intellectualdisability are stressful for the family.

The studies just mentioned all used maternal reports of thechild’s behavior and mental-health problems. As such, it is diffi-cult to determine to what extent the mother’s own psychologicalwell-being may have introduced bias into her reports of thechild’s behavior or mental-health problems. Independent assess-ment of the mental health of adults with intellectual disabilitywould be a methodological advance in this regard. With partici-pant screening, attention to methodological issues in interview-ing individuals with intellectual disabilities, and provision ofappropriate support, individuals with mild to moderate intellec-tual disability have been found to be reliably and validly ableto self-report on their mental-health symptoms (Esbensen &Benson, 2005; Esbensen, Seltzer, Greenberg, & Benson, 2005;Gullone, Cummins, & King, 1996; Lunsky, 2003; Nezu, Nezu,

Rothenberg, DelliCarpini, & Groag, 1995; Ramirez & Kratoch-will, 1997). By using self-reports from adults with intellectualdisability of their mental-health symptoms and self-reports frommothers of their psychological well-being, the two constructs canbe examined independent of reporter bias.

The current analysis sought to examine the impact of depres-sive symptoms in adults with intellectual disability on maternalwell-being. We focused on depression in the adults with intellec-tual disability because it is a common form of psychopathologyexperienced by this population (Clay & Thomas, 2005; Deb,Thomas, & Bright, 2001). In addition, caregiving for childrenwith depression without intellectual disability has been found tohave a negative impact on maternal well-being (Angold et al.,1998). Also, depressive symptoms have been found to predictcaregiving strain when comorbid with other disorders (e.g.,attention deficit hyperactivity disorder; Bussing et al., 2003). Assuch, it is likely that parenting an adult child with intellectualdisability and depressive symptoms may be more stressful thanparenting an adult child with intellectual disability alone.

In the present study, we pose two research questions. The firstis whether the depressive symptoms of the adult with intellectualdisability are related to concurrent maternal well-being, as mea-sured by maternal depression, pessimism, subjective burden, andthe mother’s perception of the quality of the relationship with herson or daughter. We hypothesized that elevated levels of depres-sive symptoms reported by the adult with intellectual disabilitywould be associated with negative reports of maternal well-being, concurrently assessed. The second question is whether thedepressive symptoms of the adult with intellectual disability havea lagged effect on the mother’s well-being over a 3-year period.With behavior problems playing a large predictive role in mater-nal well-being in other studies (McIntyre et al., 2002; Orsmondet al., 2003), and with depressive symptoms and behavior prob-lems being correlated, but not highly (Esbensen et al., 2005; Ross& Oliver, 2002), we hypothesized that self-reports of depressivesymptoms by the adult with intellectual disability would predictdecreases in maternal well-being over time, even after controllingfor behavior problems.

METHODS

Study Design

The current sample was drawn from a larger longitudinalstudy of mothers aged 55 years and older caring for an adult sonor daughter with intellectual disability (Krauss & Seltzer, 1999).From 1988 to 2000, eight waves of data were collected at 18-month intervals on an initial sample of 461 adults with intellec-tual disability who lived at home. At the second wave of datacollection (1989–90), 390 adults with intellectual disability con-tinued to live at home and were eligible for an interview regardingtheir risk of depression. Of these, 126 adults with intellectualdisability were administered the measure of depressive symp-

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toms, with 119 providing valid information. Cases were judgedas invalid when acquiescence was present or the interviewer con-cluded that the interview did not provide valid information. Theother 264 adults did not participate in the depression interviewfor the following reasons: pretest cognitive or language screeningcriteria for the self-report measure were not met, refusal by parentor the adult, or violent behavior.

At the fourth wave of data collection 3 years later (1992–93),88 of these adults continued to be coresiding with their mothers.Of the others, 13 had moved out of the family home, 17 were lostto attrition, and one adult was dropped because of maternaldeath. Adults dropped from the analysis were not significantlydifferent from those retained on measures of depressivesymptoms, t(117) = −1.17, p > 0.05, or behavior problems,t(117) = −1.01, p > 0.05. The mothers of 73 of these 88 adults hadcomplete data at both Time 2 and Time 4 for the maternal well-being measures. One case was dropped to limit the sample toindividuals with mild to moderate intellectual disability. Afterscreening for multivariate outliers, another case was droppedfrom the analyses. This case had diagnostic statistics for a measureof maternal well-being at both Time 2 and Time 4 that were allextremely large (i.e., Studentized residual (−3.23), distance(11.71), leverage (0.16), and influence (0.38)). These 71 individ-uals constituted the sample for the present analysis. We selectedfor analysis data collected at Time 2, because it was the only timethat depressive symptoms were assessed in the adult with intel-lectual disability, and data collected at Time 4, because it extendedthe length of time between reports of maternal well-being whilealso retaining a sufficiently large sample size for analysis.

Participants

The sample in the present analyses thus included 71 coresid-ing mothers and their adult children with mild to moderate intel-lectual disability. Mothers ranged in age, at Time 2, from 56 to86 years (M = 67.5, SD = 6.5). They were all Caucasians, prima-rily with an education below a college degree (78.9%); most(70.4%) were not currently working and had a median familyincome that averaged $25,000 to $29,999.1 Most of the respon-dents were married (66.2%), 29.6% widowed, and an additionalthree mothers (4%) became widows between Time 2 and Time 4.

The adult children with intellectual disability ranged in agefrom 17 to 59 years (M = 35.4, SD = 8.2) at Time 2. They wereprimarily males (56.3%) with mild intellectual disability (63.4%).Over a third of the sample (36.6%) also had a diagnosis of Downsyndrome. Forty-six percent of the adults with Down syndromehad mild intellectual disability.

Instruments

Depressive symptoms The Self-Report Depression Question-naire (SRDQ) is a 32-item self-report measure of depressivesymptomatology developed for individuals with mild intellectualdisability (Reynolds & Baker, 1988). Sample items include “I feelsad” and “I am no good.” Item responses reflect the frequencywith which the symptom was experienced during the last 2 weeks.The last item on the SRDQ asks the individual to select one offive faces, graduated from a smile to a frown, to express how heor she felt during the last 2 weeks. Psychometric properties forthe SRDQ are good. The internal consistency is high, test–retestreliability is moderate, and criterion validity has been established(Esbensen et al., 2005; Reynolds & Baker, 1988). For the currentstudy, the internal consistency was 0.87.

Maternal well-being Four dimensions of maternal well-beingwere assessed: depressive symptoms, pessimism, subjective feel-ings of caregiving burden, and perception of the quality of herrelationship with her adult child.

The Center for Epidemiological Studies-Depression Scale(CES-D) was used to measure depressive symptoms amongmothers (Radloff, 1977). For 20 depressive symptoms, themothers indicated on a four-point scale how often the symptomwas experienced in the last week. The CES-D has been usedextensively with older adults (Gatz & Hurwicz, 1990) and hasbeen proven to be a reliable and valid instrument (Himmelfarb& Murrell, 1983). For the current study, the internal consistencywas found to be 0.87 at Time 2, and 0.88 at Time 4.

Pessimism was measured using the corresponding subscalefrom the Questionnaire on Resources and Stress-F (Friedrich,Greenberg, & Crnic, 1983). The 11-item pessimism subscaleasked whether the mother has concerns about her child’s futureand potential for achieving self-sufficiency. The internal consis-tency was 0.77 at Time 2, and 0.79 at Time 4.

The Zarit Burden Interview is a 29-item measure of subjectiveburden related to caregiving (Zarit, Reever, & Bach-Peterson,1980). Subjective burden represents potential problems that amother may experience as a result of the caregiving demands ofher son or daughter. Mothers indicated how much discomfortwas caused by each item. The internal consistency for this instru-ment was 0.83 at Time 2, and 0.84 at Time 4.

The Positive Affect Index (PAI) was used to measure themother’s perception of the quality of her relationship with heradult son or daughter (Bengston & Schrader, 1982). This 10-itemscale assesses the mother’s feelings toward her child and her per-ception of her child’s feelings toward her. Items relate to feelingsof intimacy, trust, understanding, fairness, and respect, and arerated on a six-point scale. The internal consistency for the PAIwas 0.87 at Time 2, and 0.91 at Time 4.

Behavior problems The Problem Behavior scale of the Scales ofIndependent Behavior—Revised is an informant report instru-ment that assesses eight problem behaviors: hurtful to self,

1The median household income in the U.S. in 1988 was $28,781 for Caucasianhouseholds, $30,588 for households ages 55–64 years, and $15,611 for house-holds ages 65 and older (U.S. Census Bureau, 2005a, 2005b).

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unusual or repetitive habits, withdrawn or inattentive behavior,socially offensive behavior, uncooperative behavior, hurtful toothers, destructive to property, and disruptive behavior (Bruin-inks, Hill, Weatherman, & Woodcock, 1986). Individual problembehaviors were scored by the mother as present or absent. A totalcount (0–8) was obtained of the number of problem behaviorsthat was reported for each individual.

Data Analysis

In order to identify potential variables to control in subse-quent analyses, the measures of maternal well-being at Time 2and Time 4 were evaluated for differences on or correlations withdemographic variables. Demographic characteristics of themother included her education, age, and marital status. Demo-graphic characteristics of the son or daughter included age, sex,level of intellectual disability, and presence of Down syndrome.No significant demographic characteristics were identified asassociated with the Time 2 measures of maternal well-being. AtTime 4, mothers with less than a college degree reported a betterquality of her relationship with her son or daughter than didmothers with a college degree or higher (F1,69 = 7.81, p < 0.05), asdid younger mothers (r = −0.26, p < 0.05), and mothers of daugh-ters as compared with mothers of sons (F1,69 = 3.25, p = 0.08).Mothers with less than a college degree reported less pessimismthan did mothers with a college degree or higher (F1,69 = 3.06,p = 0.08), as did mothers of adult children with moderate intel-lectual disability (F1,69 = 2.99, p = 0.09). Therefore, maternal edu-cation, maternal age, and sex and level of intellectual disability of

the son or daughter were included in the multivariate modelsusing Time 4 data.

Bivariate correlations were used to address the first researchquestion regarding the concurrent association between the adultchild’s depressive symptoms and maternal well-being. Multiplehierarchical regression was used to test the second research ques-tion, which investigated the extent to which the adult child’sdepressive symptoms would predict maternal well-being 3 yearslater, after controlling for behavior problems and identifieddemographic characteristics.

RESULTS

The means, standard deviations, internal consistencies, andintercorrelations for maternal well-being and the adult child’sdepressive symptoms and total behavior problems are presentedin Table 1. Test–retest reliabilities for the measures of maternalwell-being ranged from moderate to strong.

The depressive symptoms of the adults with intellectualdisability were normally distributed, with scores ranging from35 to 75. The mean and median (58) were comparable tothose obtained in other studies (Esbensen et al., 2005; Rey-nolds & Baker, 1988). Using the screening criteria proposedin Esbensen et al. (2005), 30% of the sample met the criteriafor major symptoms of depression, 32% for mild symptomsof depression, and 38% for not having symptoms of depres-sion. The number of behavior problems reported by themother was positively skewed, with a range of 0–6 behaviorproblems.

TABLE 1Intercorrelations, means, standard deviations, and alphas of study variables (n = 71)

Variable 1 2 3 4 5 6 7 8 9 10

1. Adult child’s depressive symptoms (0.87)2. Maternal depressive symptoms T2 0.32** (0.87)3. Maternal depressive symptoms T4 0.39** 0.63** (0.88)4. Maternal pessimism T2 0.19 0.28* 0.35** (0.77)5. Maternal pessimism T4 0.31** 0.28* 0.42** 0.80** (0.79)6. Maternal burden T2 0.16 0.38** 0.32** 0.57** 0.54** (0.83)7. Maternal burden T4 0.30* 0.37** 0.54** 0.58** 0.65** 0.64** (0.84)8. Quality of relationship T2 0.07 0.00 −0.04 −0.20 −0.24* −0.32** −0.17 (0.87)9. Quality of relationship T4 0.07 0.15 −0.10 −0.19 −0.28* −0.24* −0.22 0.68** (0.91)

10. Total behavior problems T2 −0.06 −0.10 0.01 0.24* 0.25* 0.18 0.11 −0.36** −0.29* –Mean 57.22 10.27 10.87 6.49 6.17 29.57 29.56 51.58 50.96 1.69SD 9.50 8.08 8.31 2.77 2.95 6.23 6.96 4.99 5.71 1.43

**p < 0.01, *p < 0.05.Note: Internal consistency coefficients are presented on the diagonal. Retest reliability is presented in bold.T2, Time 2; T4, Time 4.

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The depressive symptoms of the mother were also positivelyskewed, with scores ranging from 0 to 38 at Time 2 and from 0to 35 at Time 4. At Time 2, 23.9% (n = 17) of the sample scoredabove the cut-off of 16 on the CES-D, indicating moderate levelsof depressive symptoms. At Time 4, 26.8% (n = 19) of the samplescored above this cut-off. The other measures of maternal well-being were all normally distributed. Measures of maternal sub-jective burden ranged from 17 to 43 at Time 2 and from 17 to 47at Time 4. Measures of maternal pessimism ranged from 0 to 11at both time points, and measures of maternal perception of thequality of the relationship with her son or daughter ranged from36 to 60 at Time 2 and from 34 to 60 at Time 4.

Depressive Symptoms and Concurrent Well-Being

For our first research question, we hypothesized that thedepressive symptoms of the adult with intellectual disabilitywould be correlated with concurrent measures of maternal well-being, as measured by maternal depressive symptoms, pessimism,subjective burden, and the quality of the relationship with thechild. As shown in Table 1, the child’s level of depressive symp-toms was significantly correlated with maternal depressive symp-toms at Time 2 (r = 0.32, p < 0.01). However, contrary to ourexpectations, the adult child’s level of depressive symptoms wasnot correlated with the Time 2 measures of the quality of therelationship, pessimism, or subjective burden.

Depressive Symptoms and Prospective Well-Being

For our second research question, which involved a longitu-dinal analysis, we hypothesized that the depressive symptoms ofthe adult at Time 2 would be predictive of maternal well-being3 years later, at Time 4, as measured by subjective burden, mater-nal depressive symptoms, pessimism, and the mother’s report ofthe quality of the relationship with her adult son or daughter withintellectual disability.

We found that the Time 2 level of each dependent variablewas a significant predictor of this variable at Time 4 (see Table 2).Identified covariates were also significant predictors of some mea-sures of maternal well-being at Time 4. The sex of the adult childand maternal age and education were predictive of the maternalperception of the quality of the relationship with her son ordaughter. Younger mothers, less educated mothers, and mothersof daughters all reported a more positive perception of the qualityof the relationship with their adult children. Mothers of adultchildren with mild, compared to moderate, intellectual disabilitywere more pessimistic about their children’s future.

In addition, as hypothesized, we found that the depressivesymptoms of the adult with intellectual disability was a signifi-cant predictor of maternal depressive symptoms (F1,63 = 5.16,p < 0.05), pessimism (F1,63 = 5.85, p < 0.05), and subjective bur-den (F1,63 = 4.89, p < 0.05) at Time 4, after controlling for priorlevels of maternal well-being, behavior problems, and covariates.However, the depressive symptoms of the adult with intellectual

TABLE 2Hierarchical regression analyses for the depressive symptoms of the adult with intellectual disability predicting Time 4 maternal well-being (n = 71)a

Maternaldepressive symptoms Maternal pessimism Maternal burden Quality of relationship

Step 1 Step 2 Step 1 Step 2 Step 1 Step 2 Step 1 Step 2

Maternal age −0.01 0.03 −0.09 −0.06 0.06 0.08 −0.19** −0.19**Maternal level of educationb 0.11 0.11 0.14+ 0.14** 0.16+ 0.16+ −0.20** −0.20**Sex of adult childc −0.09 −0.11 −0.04 −0.05 0.08 0.07 0.21** 0.21**Level of intellectual disabilityd 0.08 0.08 0.22*** 0.21*** 0.12 0.11 −0.06 −0.06Total behavior problems T2 0.05 0.05 0.00 0.02 −0.06 −0.04 −0.03 −0.03Maternal well-being T2 0.63*** 0.56*** 0.78*** 0.74*** 0.66*** 0.63*** 0.60*** 0.60***Depressive symptoms T2 – 0.22** – 0.17** – 0.20** – −0.02∆R2 0.42*** 0.04** 0.70*** 0.03** 0.46*** 0.04** 0.58*** 0.00

***p < 0.01, **p < 0.05, +p < 0.10.aβ coefficients are presented in the table.bCoded 0 = some college or less, 1 = college degree of higher.cCoded 0 = male, 1 = female.dCoded 0 = moderate, 1 = mild.

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disability was not a significant predictor of the maternal percep-tion of the quality of the relationship with her son or daughter(F1,63 = 0.07, p > 0.05).

DISCUSSION

Mothers caring for adults with either intellectual disability ormental illness report experiencing burden and stress, often attrib-utable to the associated behavior problems exhibited by the indi-vidual for whom they are caring. Yet the caregiving experience ofmothers with adult children with diagnoses of both intellectualdisability and a mental-health problem has not been studied. Thecurrent study sought to contribute a preliminary answer to thisquestion by examining the role that depressive symptoms ofadults with mild to moderate intellectual disability play in mater-nal well-being, both concurrently and in the longer term.

In examining the concurrent relationship between the depres-sive symptoms of the adult child with mild to moderate intel-lectual disability and ratings of maternal well-being, significantcorrelations were found between the depressive symptoms of theadult child and maternal depressive symptoms. This finding sup-ports our hypothesis that the adult child’s depressive symptomswould be related to the mother’s well-being. This finding providesa preliminary suggestion that mothers caring for an adult witha diagnosis of intellectual disability and depressive symptomsare likely to experience elevated levels of depressive symptomsthemselves.

Given these findings regarding the concurrent relationshipbetween the depression in adults with intellectual disability andtheir mothers, we sought to examine the longer term impact ofthe adult child’s depressive symptoms on maternal well-being. Wefound that the degree of depressive symptoms of the adult childwith intellectual disability was predictive of maternal depressivesymptoms, caregiving burden, and pessimism about her child’sfuture 3 years later, but not predictive of the maternal perceptionof the quality of the relationship. Thus, it appears that caring foran adult child with elevated levels of depressive symptoms has anegative impact on some but not all indicators of maternal well-being, and that this negative impact persists (and may increase)over time. These findings make an important contribution to ourunderstanding of the well-being of mothers caring for an adultchild with intellectual disability who also has some degree ofdepressive symptoms. However, it appears that elevated symp-toms of depression in the adult with intellectual disability maynot affect the relationship with his or her mother.

These findings are also noteworthy as they address the ques-tion of whether child behavior problems and mental healthsymptoms contribute independently to maternal well-being, andthey differ from the findings of past research. In the current study,depressive symptoms of the adult child had a significant influenceon maternal well-being even after accounting for the influence ofbehavior problems, whereas in past research, behavior problemshave been found to be the primary influence on maternal well-

being. This difference may be in part due to the sample we ana-lyzed. Whereas others have examined children and adolescentswith intellectual disability (Baker et al., 2003; Floyd & Gallagher,1997; Hoare et al., 1998; McIntyre et al., 2002; Tonge & Einfeld,2003), this study focused on adults. Furthermore, the currentstudy examined only adult children with mild to moderate intel-lectual disability who had the ability to self-report on symptomsof depressive symptoms, which differentiated this sample frompast research (Orsmond et al., 2003). In addition, the time spanof the present study was shorter than that previously used in paststudies of coresiding adults with intellectual disability (Orsmondet al., 2003). Nonetheless, after controlling for the influence ofbehavior problems on maternal well-being, the depressive symp-toms of the adult child with intellectual disability remained asignificant predictor of subsequent maternal well-being 3 yearslater, as measured by maternal depressive symptoms, pessimismabout her child’s future, and her perception of caregiving burden.The implication of these findings is that depressive symptoms ina son or daughter with mild to moderate intellectual disabilitymay have a negative impact on his or her mother’s well-being, inaddition to the toll taken by the adult child’s intellectual disabilityand behavior problems.

The findings from the current study reveal the importance oflongitudinal examination of the life course of caregiving foradults with intellectual disability and depressive symptoms. Therelationship between the well-being of the adult child and mater-nal well-being appears to be an unfolding association thatstrengthens over time. Over a 3-year time span, we see the depres-sive symptoms of the adult child impacting maternal well-beingand, in a related analysis based on the same study, over a 6-yeartime span, behavior problems impacted maternal well-being(Orsmond et al., 2003).

The current study has implications for mothers caring for andcoresiding with adult children with mild to moderate intellectualdisability and depressive symptoms. These mothers may requireadditional support or interventions to address their own psycho-logical well-being and worries about the future. However, itshould be noted that the depressive symptoms of the adult withintellectual disability only accounted for 3% to 4% of the variancein predicting later maternal well-being. This may be because thestudy only examined a relatively short period of time in the livesof mothers caring for adults with intellectual disability anddepressive symptoms. Yet it remains possible that this impact onmaternal well-being may become magnified over time. It also isundoubtedly the case that the adult child’s depressive symptomsare only one of the contributing causes in the larger picture of thefamily environment impacting maternal well-being. Future stud-ies need to examine the impact of caring for an adult child withmental-health problems within the framework of the other con-tributing causes, including history of psychopathology, associatedlife events, and the availability of social support. Future researchshould also consider the impact of other dual diagnoses (e.g.,intellectual disability and schizophrenia, conduct disorders,major depression, or anxiety disorders) on maternal well-being.

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There are several limitations of the current study that shouldbe noted. First, the sample was limited to adult children with mildto moderate intellectual disability who were coresiding with theirmothers. As such, the results are not generalizable to mothers ofadult children with severe to profound intellectual disability orto mothers whose adult children live away from home. Second,the current study only examined self-reports of depressive symp-toms of the adult child with intellectual disability and not clinicaldiagnoses of depression. Although the SRDQ has been shown tobe a reliable and valid measure of depressive symptoms (Esbensenet al., 2005), confirmation by clinical diagnosis would strengthenthe conclusions. Third, in the current sample, depressive symp-toms and behavior problems were not correlated as has beenreported in other samples (Esbensen et al., 2005). Hence, thefindings that the depressive symptoms of the adult with intellec-tual disability impact their mothers’ well-being beyond behaviorproblems should be considered preliminary and needing replica-tion. Fourth, the presence and impact on maternal well-being ofassociated life events was not examined. Finally, the current studydid not examine the possible bidirectional nature of the relation-ship between the depressive symptoms of the adult child withintellectual disability and maternal well-being, because depressivesymptoms were measured only once for the adult with intellec-tual disability. As such, the current study is unable to account forthe influence of maternal well-being on the reciprocal develop-ment of the depressive symptoms of the adult child. Depressionoften has a genetic component (Kendler, Neale, Kessler, Heath, &Eaves, 1992), and shared family stressors can play a role in thedevelopment of depression (Goodman & Gotlib, 1999).

The current examination has provided preliminary evidencethat symptoms of psychopathology (i.e., in this study, depressivesymptoms) exhibited by adults with mild to moderate intellectualdisability are additive in the stress they cause to their mothers.These mothers become more depressed, more negative abouttheir child’s future, and report more burden related to caregivingthan mothers of adult children with lower levels of depressivesymptoms. Also, these elevated levels of distress reported by themothers are in addition to the effects of behavior problems exhib-ited by their adult children. The next steps are to investigate thereciprocal relationship between the mother’s well-being and thesubsequent well-being of her adult child, to investigate the impacton the well-being of fathers and siblings, and to investigate theimpact of clinical diagnoses of psychopathology on the family.There is a need to consider all of these factors in order to deter-mine the most appropriate types of support to be offered tofamilies caring for an adult with both intellectual disability andpsychopathology.

AUTHOR NOTE

This research was supported in part by grants from theNational Institute on Ageing (R01 AG08768), the National Insti-tute on Child Health and Human Development (P30 HD03352,

T32 HD07489), and the National Institute on Disability andRehabilitation Research (H133B031134) through the Rehabilita-tion and Research Training Center on Ageing and DevelopmentalDisabilities at the University of Illinois at Chicago.

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