maternal depression and developmental disability: research critique

MATERNAL DEPRESSION AND DEVELOPMENTAL

DISABILITY: RESEARCH CRITIQUE

Donald B. Bailey, Jr.,1* Robert N. Golden,2 Jane Roberts,3 and Amy Ford41RTI International, Research Triangle Park, North Carolina

2School of Medicine, University of Wisconsin-Madison, Madison, Wisconsin3FPG Child Development Institute, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina

4School of Medicine, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina

Maternal depression in families having a child with a disability hasbeen the subject of considerable research over the past 25 years. Thisreview was designed to describe the literature on maternal depression,critique its research methodology, identify consensus findings acrossstudies, and make recommendations for future research. A particular em-phasis is on the distinction between exhibiting depressive symptoms andmeeting clinical criteria for a depressive disorder, how or whetherresearch studies made this distinction, and implications for our under-standing of maternal adaptation to disability in a family member. Of the42 articles reviewed, only eight were clinically diagnosed depression;most of them used a scale rating depressive symptoms. Across the stud-ies, mothers of children with disabilities generally exhibited a higher thanaverage rate of depressive symptoms and are more at risk for clinicaldepression, but the incidence may be lower than reported in previous lit-erature. Child behavior problems, maternal stress, coping style, and sup-port were consistently associated with depressive symptoms. We con-clude that we know relatively little about clinical depression in mothersof children with disabilities. The distinction between clinical depressionand depressive symptoms may be important in conceptualizing how achild with a disability can influence family members and the nature ofsupport that may need to be provided. Future research should incorpo-rate gold standard diagnostic tools and assess history, severity, and typeof depression. Research is also needed to study treatments to reduce theoccurrence of both depressive symptoms and clinical depression.

' 2007 Wiley-Liss, Inc.MRDD Research Reviews 2007;13:321–329.

Key Words: maternal depression; families and disability

Farber’s [1963] classic text, Mental Retardation: Its SocialContext and Social Consequences, argued that conditionssuch as mental retardation and other developmental dis-

abilities exist in and are shaped by social contexts, one of themost important of which is the family. This assertion is nowwell documented, as is the assertion that disability can, inturn, have a profound effect on other family members. Somefamily members report that having a child with a disability hasaltered their lives in positive ways, for example, helping themgain a new perspective on what is important in life and pro-viding a sense of meaning and purpose that otherwise mighthave been missing [Turnbull et al., 1986; Affleck and Tennen,1993; Patterson and Leonard, 1994; Skinner et al., 1999].

However, the preponderance of research has focused onthe negative consequences of having a family member with a

disability [Turnbull et al., 1993; Myers, 1996; Krauss andSelzer, 1998; Minnes, 1998; Shapiro et al., 1998; Krauss,2000]. Families must cope with the sadness that almost inevi-tably accompanies the discovery that one’s child has a majordisability. This discovery can cause personal distress, which inturn can affect family relations and marital adjustment. Fami-lies must also seek out and interact with a wide range of pro-fessionals and specialized service providers. These interactionscan sometimes be frustrating and expensive, and families oftenfeel that their children are not receiving the services neededto maximize their development. Family members who experi-ence frustration and failure with the service system may expe-rience a loss of control and feelings of inadequacy. And forsome, their child’s condition raises philosophical and religiousquestions about the meaning of life events, whether thoseevents are random or planned, and the extent to which theymay have done something that caused the disability to occur.

One commonly held assumption is that the multiplestressors associated with being a parent of a child with a dis-ability could result in higher rates of depression or depressivesymptoms, especially for mothers. If true, there are importantimplications for the long-term well-being of mothers, due tothe debilitating effects of depression, as well as for children,since a substantial literature documents the adverse effects ofmaternal depression on children’s development, emotions, andbrain activity [Goodman and Gotlib, 2002; Dawson et al.,2003]. Recent research suggests that remission of maternaldepression is associated with concomitant reduction in psychi-atric diagnoses in children [Weissman et al., 2006].

Documenting maternal depression in developmental dis-ability and understanding factors associated with depressivesymptoms has been the focus of an extensive literature overthe past 25 years. A recent meta-analysis of 18 comparative

Grant sponsor: National Institute on Child Health and Human Development; Grantnumber: P30HD003110-38S1.*Correspondence to: Don Bailey, Ph.D., RTI International, 3040 Cornwallis Rd.,Research Triangle Park, NC 27709-2194. E-mail: [email protected] 20 August 2007; Accepted 21 August 2007Published online in Wiley InterScience (www.interscience.wiley.com).DOI: 10.1002/mrdd.20172

MENTAL RETARDATION AND DEVELOPMENTAL DISABILITIESRESEARCH REVIEWS 13: 321 – 329 (2007)

' 2007Wiley -Liss, Inc.

studies of depression in mothers of chil-dren with and without developmentaldisabilities found higher levels ofdepressive symptoms in mothers of chil-dren with developmental disabilities,with an effect size of 0.39, and an esti-mated average of 29% of mothers ofchildren with disabilities who had sig-nificantly elevated symptoms (scoresfalling on or above a clinical cut-offscore) [Singer, 2006]. Meta-analysis is apowerful tool used to standardize andintegrate findings from multiple studiesby calculating an effect size for eachstudy, weighting studies based on sam-ple size, and then averaging effect sizesto determine the magnitude of groupdifferences across studies [Hedges andOlkin, 1985]. Singer’s [2006] paper isan excellent example of how meta-anal-ysis can provide useful and more validinsights about a corpus of work thancould be provided by any single study.However, meta-analysis requires thatcertain assumptions be met before astudy can be included in the analysis. Inthe case of Singer’s paper, studies werelimited to those in which the research-ers ‘‘collected data on depressive symp-toms or general psychological distress,including depression, by using publishedstandardized self-report measures withwell-established psychometric proper-ties’’ (p. 158). This approach necessarilyexcluded studies in which depressionwas diagnosed using a psychiatric inter-view applying DSM-IV criteria, since adiagnosis does not lend itself readily toa statistical score. Likewise, because theinstruments used in the selected studiesall report current depression (oftenwithin the last week or two), studiesreporting lifetime history of depressionwould also have been excluded.

This prompts a more fundamentalquestion regarding the models andassumptions underlying research onmaternal depression in developmentaldisability. One model assumes that hav-ing a child with a disability can exacer-bate feelings of sadness or ‘‘depressivesymptoms’’ (feelings that would be nor-mal under such circumstances, althoughthey could be elevated over long peri-ods of time). Another model assumesthat having a child with a disabilitycould result in clinical depression, amore debilitating state with serious con-sequences for both children and fami-lies. The distinction between these twomodels is important because it affectsthe instruments used in research studies,the conclusions drawn about mecha-nisms and consequences of risk, andpossible treatment alternatives. A defin-

ing feature of clinical depression issymptoms that are so pervasive or debil-itating that they impair the ability toenjoy life or function as the individualnormally would. Sadness is disruptiveand unpleasant, but does not bear thesame level of implications for impair-ment or treatment.

This review was designed todescribe the literature on maternaldepression, critique its research method-ology, identify consensus findings acrossstudies, and make recommendations forfuture research. A particular emphasis ison the distinction between clinical de-pression and depressive symptoms, howor whether research studies made this dis-tinction, and implications for our under-standing of maternal adaptation to disabil-ity in a family member. We begin withan overview of current concepts ofdepression. We then review and analyze42 articles published since 1980 to deter-mine how depression was measured, whatresults were reported, and any child orfamily factors correlating with depression.We identify key limitations of existingresearch, arguing that we know very littleabout clinical depression in mothers ofchildren with disabilities, and suggestimplications for the next generation ofresearch on maternal depression and de-velopmental disability.

CURRENT CONCEPTS OFDEPRESSION

The term ‘‘depression’’ is appliedto different concepts, both in generalusage and in the research literature. Itoften is used conversationally to refer tothe normal everyday human experienceof sad mood, or dysphoria, which canbe triggered by an adverse or disap-pointing experience and is usually tran-sient. ‘‘Depression’’ is also at times usedto describe the more prolonged andintense process of normal mourning orbereavement following a significant lossor life event, such as the death of aloved one. While there is a continuumwithin the range of normal experiencesof sadness, a clear distinction is madewith regard to individuals who are sadversus those who meet criteria for adepressive disorder that reflects a trueillness or disease state. From a diagnosticperspective, ‘‘depression’’ may refer toany of several specific syndromes.‘‘Adjustment disorders’’ are syndromesin which emotional or behavioral symp-toms develop in response to an identifi-able stressor, within 3 months of theonset of the stressor but not presentingfor more than 6 months after the stres-sor has ended. The symptoms or behav-

iors must be clinically significant, eitherin terms of impairment in social oroccupational functioning or marked dis-tress in excess of what might beexpected. When the predominantsymptom is sadness, the appropriatediagnostic term is ‘‘adjustment disorderwith depressed mood’’ [American Psy-chiatric Association, 1994].

When psychiatrists or clinical psy-chologists use the term ‘‘depression,’’they typically are referring to a specificmood disorder, and in particular, to amajor depressive episode (MDE). MDEis a syndrome in which depressed moodoften predominates the clinical picture,but in fact depressed mood does notneed to be present. If a person experi-ences either depressed mood or the lossof interest or pleasure in nearly all activ-ities, and has a total of five or moresymptoms that occur for most of theday, nearly everyday, for at least 2weeks, then an MDE is present (seeTable 1). Note that most of the requi-site characteristics are not emotional.Neurovegetative signs and symptoms,including disturbances in appetite, sleep,psychomotor activity, and energy, play asubstantial role in defining this syn-drome [American Psychiatric Associa-tion, 1994]. An MDE may occur in thecontext of a major depressive disorder,with either single or recurrent episodes.Most often, individuals with a majordepressive disorder have recurrent MDEepisodes, each lasting from a fewmonths to a few years, with an absenceof symptoms in between episodes[WHO, 2001]. MDE may also be acomponent of a bipolar disorder, inwhich manic, hypomanic, or mixedepisodes (features of both a manic epi-sode and MDE) emerge and are ofteninterspersed over time with MDEs.

Dysthymic disorder is anotherspecific mood disorder, which can bethought of as a chronic, ‘‘low grade’’form of clinical depression. Fewer signsand symptoms are required to make thisdiagnosis (compared with MDE), butthe required duration of symptoms ismuch longer (i.e., 2 years rather than 2weeks; see Table 1) [American Psychiat-ric Association, 1994]. Dysthymic disor-der and occasionally adjustment disorderwith depressed mood are sometimesreferred to as ‘‘minor depression’’ in theliterature, in contrast to major depres-sive disorder and bipolar disorder.

Major depressive disorder, themost prevalent mood disorder, is com-mon. In community studies, the pointprevalence (current at time of assess-ment) ranges from 5 to 9% for women

322 MRDD Research Reviews DOI 10.1002/mrdd � Maternal Depression Critique � Bailey et al.

and from 2 to 3% for men [Kessleret al., 2003]. MDE is associated withconsiderable morbidity and mortality. Inaddition to social and occupationalimpairment, individuals with MDEhave an elevated risk for suicide (up to15% in patients with severe MDE)[American Psychiatric Association,1994]. Mortality rates associated withseveral medical conditions (e.g., myo-cardial infarction, HIV/AIDS) are ele-vated in individuals with co-morbiddepression [Evans et al., 2005]. TheWorld Health Organization lists depres-sion as the leading neuropsychiatriccondition causing disability and predictsthat the global burden for depressionwill be second only to that of ischemicheart disease by the year 2020 [WHO,2001].

The pathogenesis of majordepressive disorder represents a classicexample of interactions between ‘‘na-ture’’ and ‘‘nurture’’, i.e. biological vul-nerability and the environment [Leo-nardo and Hen, 2006]. There is clearlya familial component to MDE. Firstdegree biological relatives of personswith MDE have an increased rate ofdepression that is 1.5–3.0 times greaterthan the general population [American

Psychiatric Association, 1994]. Multiplebiological systems have been implicatedin the pathophysiology, including neu-rochemical systems (e.g., serotonin,norepinephrine, GABA) and neurohor-monal systems (e.g., the hypothalamic-pituitary-adrenal axis) [Flores et al.,2004]. At the same time, it is clear thatpsychosocial stressors play a significantrole in the precipitation of an MDE,although psychosocial events seem toplay less of a role with each subsequentrecurrent episode [American PsychiatricAssociation, 1994]. There are interac-tions in the biological and psychosocialrisk factors. For example, psychosocialstressors have a much greater impact onthe hazard ratio for depression in peoplewho have a variant form of the genethat regulates the serotonin transportercompared with the impact in individu-als with the more common form of theserotonin transporter gene [Kendleret al., 2005].

Reviewing studies of ‘‘depression’’can resemble the proverbial ‘‘apples andoranges’’ comparison if the specific‘‘depression’’ syndrome in each study isnot clearly defined. Studies which mea-sure mood state alone may or may notbe capturing cases of MDE; without a

systematic evaluation of each of thepotential defining characteristics of thesyndrome, it is impossible to tell howmany, if any, subjects had a majordepressive disorder. It is important toknow which ‘‘depression’’ diagnosis(es)was included in a given study, whichdiagnostic criteria were utilized indefining the diagnosis, and how thosecriteria were assessed, and the back-ground, training, and reliability of theindividuals making the assessments.

METHODS

Selection of Articles for StudyInclusion

We conducted a systematic litera-ture search of research on maternaldepression and developmental disabil-ities, using PubMed and PsycInfo toidentify papers published on this topicin the past 25 years. In addition, weexamined the reference list of eachidentified article to locate other studies.Studies were selected for inclusion if (a)the study assessed clinical depression ordepressive symptoms in mothers whohad at least one child with a develop-mental disability and (b) depression wasexamined as a major dependent variablein the study, either to document itsincidence, to compare rates of depres-sive symptoms across groups, or todetermine factors associated with de-pressive symptoms. Studies were elimi-nated that gathered data on depressivesymptoms but only used those data in apredictive fashion without reportingincidence rates, as in the case of Dekkerand Koot [2003], who examined therelationship between parent mentalhealth and DSM-IV disorders in theirchildren with intellectual disability, butdid not report data on the extent towhich mothers reported depressivesymptoms. We also eliminated studieswhere the same sample had been usedin two different publications [e.g.,Pruchno et al., 1996; Pruchno and Pat-rick, 1999] selecting the primary studyonly for inclusion in this review. Somestudies used in Singer’s [2006] meta-analysis were not included in thisreview, such as those that used the Par-enting Stress Index, which is not anacknowledged measure of depressivesymptoms. We did not include confer-ence presentations or unpublisheddoctoral dissertations. Two studies basedon the National Health Interview Sur-vey were considered, but discarded.One of these [Witt et al., 2003] mixedcurrent depressive symptoms with thoseoccurring in the past year, making it

Table 1. Abridged Diagnostic Criteria for Major DepressiveEpisode and Dysthymic Disorder

Major depressive episodeMust have at least five of the following symptoms during a 2-week period, including eitherdepressed mood (a) or loss of interest or pleasure (b)a. Depressed mood most of the day, nearly every dayb. Marked decrease in interest or pleasure in all, or nearly all, activitiesc. Significant weight loss or weight gaind. Insomnia or hypersomniae. Psychomotor agitation or retardationf. Fatigue or loss of energy nearly every dayg. Feelings of worthlessness or inappropriate guilth. Diminished concentrationi. Recurrent thoughts of death, suicidal ideation, or suicide attempt

Symptoms cause significant distress or impairment in social, occupational, or otherimportant areas of functioning

The symptoms are not due to a medical condition or drugsThe symptoms are not better accounted for by bereavement

Dysthymic disorderDepressed mood for most of the day, for more days than not, for at least 2 yearsPresence of at least two of the followinga. Decreased appetite or overeatingb. Insomnia or hypersomniac. Fatigue or low energyd. Low self-esteeme. Poor concentration or indecisivenessf. Feelings of hopelessnessg. During the 2-year period, symptoms have never been absent for morethan 2 months at a time

h. No major depressive episode was present during the first 2 years of the disturbancei. The symptoms are not due to a general medical condition or drugsj. The symptoms cause clinically significant distress or impairment in social,occupational, or other important areas of functioning

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impossible to differentiate current versuspast depression, and the other [Lesesneet al., 2003] was based on a single itemasking if the mother had experiencedan activity-limiting depression, anxiety,or emotional problem, making itimpossible to differentiate depressionfrom other conditions. Forty-twoarticles met criteria for study inclusion.(Abbeduto et al. [2004]; Affleck et al.[1983]; Blacher et al. [1997]; Bristolet al. [1988]; Burden [1980]; Carpi-niello et al. [1995]; Dumas et al. [1991];Essex et al. [1999]; Franke et al. [1996,1998]; Freund et al. [1992]; Friedrichet al. [1988]; Gill and Harris [1991];Glidden and Floyd [1997]; Glidden andSchoolcraft [2003]; Gowan et al.[1989]; Johnston et al. [2001]; Manuelet al. [2003]; Miller et al. [1992]; Grayand Holden [1992]; Olsson and Hwang[2001]; Harris and McHale [1989];Harvey et al. [1997]; Hastings [2003];Heller et al. [2000]; King et al. [1999];Lambrenos et al. [1996]; Piven et al.[1991]; Piven and Palmer [1999];Pruchno et al. [1996]; Scott et al.[1997]; Seltzer et al. [1995, 2004]; Sha-piro and Tittle [1990]; Sharpley andBitsika [1997]; Sobesky et al. [1994];Thompson et al. [1996]; Van Riperet al. [1992]; Veisson [1999]; Weiss[2002]; Wolf et al. [1989]; and Yimet al. [1996]. Complete coding tablesare available from the first author.)

Data CollectedEach article was read and tables

constructed for three primary types ofinformation:

1. Study design and sample composi-tion: data included the numberof mothers included in thestudy, the nature of theirchild’s disability, whether datawere collected on fathers aswell, whether the studyincluded a sample of motherswho did not have a child witha disability, and whether thestudy compared rates of clini-cal depression or depressivesymptoms across multiple typesof disability.

2. Measurement of depression andreported prevalence rates: data in-cluded the measure(s) used todocument depression, the timeperiod over which mothersreported (current or lifetime),whether the study included anactual clinical diagnosis ofdepression, mean scores on anymeasures used, and the reported

prevalence, overall and by dis-ability type.

3. Correlates of depression: we do-cumented whether the studyassessed any of the five childvariables (type of disability,age, autistic behavior or behav-ior problems, IQ, and gender)or nine maternal/family varia-bles (stress/well-being, accul-turation/ethnicity, maternalphysical health, family sup-port/cohesion, maternal IQ,maternal coping style, numberof other children with devel-opmental disabilities in thefamily, family income, andmaternal education) andwhether a statistically signifi-cant relationship between anyof these variables and depres-sive symptoms was reported.

RESULTS

Sample CompositionThe 42 studies included a total of

5,741 parents who had a child with adevelopmental disability. This numberincluded 4,077 mothers, 1,165 fathers,and 499 parents for whom gender wasnot reported. Nineteen studies includeda sample of mothers who did not havechildren with disabilities, for an addi-tional 1,750 mothers. Of the mothersof children with disabilities, the mostcommon child disability status wasmental retardation or developmentaldisability (including specific etiologygroups such as Down syndrome or frag-ile X syndrome) (70%), followed bychildren with autism (12%), cerebralpalsy or other motor impairments(12%), mental health or behavior prob-lems (4%), and prematurity (2%).

Measurement of DepressionThirty-five (83%) of the studies

relied exclusively on a rating scale com-pleted by the parent to measure depres-sive symptoms. The most commonlyused scales were the Center for Epide-miologic Studies Depression Scale (CES-D) [Radloff, 1977] (n 5 13) and theBeck Depression Inventory (BDI) [Beckand Steer, 1987; Beck et al., 1996] (n 512). Other rating scales included theSymptom Checklist-90D [Derogatis,1983] (n 5 3), Zung’s Self-RatingDepression Scale [Zung, 1965]) (n 5 2),the Profile of Mood States [McNairet al., 1971] (n 5 2), the Brief SymptomInventory [Derogatis and Spencer, 1982](n 5 1), the Delusion Symptoms States

Inventory: Depression Scale [Bedfordand Foulds, 1978] (n 5 1), the HospitalAnxiety and Depression Scale [Zigmondand Snaith, 1983] (n 5 1), and the Mal-aise Inventory [Rutter et al., 1970] (n 52). Each of the rating scale studies meas-ured current or recent depression only,with varying criteria for recency. Forexample, the CES Depression Scale asksrespondents to report on the precedingweek, the Profile of Mood States reports‘‘recent mood,’’ and the SymptomChecklist-90-R and the BDI ask for‘‘current’’ feelings.

Eight studies (17%) used an inter-view format and a clinical diagnosis ofdepression. Of these studies, five usedthe Schedule for Affective DisordersInterview—Lifetime Version [Endicottand Spitzer, 1978], two used the Diag-nostic Interview for Genetic Studies(DIGS) [Nurnberger et al., 1994] plusDSM-III-R criteria, and one used theMalaise Inventory plus a ‘‘diagnosticinterview’’ to confirm depression. Sevenof the interview studies reported life-time history of depression, and onereported current depression.

Forms of Data ReportedGenerally, the rating scales would

be considered screening measures fordepression or depressive symptoms.Most report a total score and have acut-point that indicates a threshold forreferring individuals for further diagno-sis. Ten studies reported mean scores onthe rating scales, and thus in those stud-ies it was impossible to determine thepercentage of mothers who met thethreshold for referral. Fourteen studiesreported both a mean score on the rat-ing scale and the percentage of motherswho scored above the threshold. Tenstudies only reported the percentage ofmothers who ‘‘met’’ criteria; of theseeight were the interview studies (sevenof which reported lifetime history ofdiagnosed depression), and two werestudies that used a rating scale andreported the percentage of mothersabove the threshold for referral, bothbased on current symptoms. Finally,eight studies gathered data aboutdepression but did not report meanfindings or incidence. Typically, thefocus of these studies was to determinethe extent to which selected child, fam-ily, or maternal variables were related todepressive symptoms.

Incidence of Maternal Depressionin Developmental Disability

One goal of this review was todetermine if there was general consensus


in the literature on the incidence ofmaternal depression in families that hadat least one child with a disability. Four-teen studies reported current depression,as indicated by the percentage of motherswho crossed a threshold for depressivesymptoms on a self-report rating scale.For articles in which multiple assessmentswere conducted as part of a longitudinalstudy, we only used data from the firstassessment. Incidence rates ranged from6 to 49% across the 14 studies. A largepart of this variability is likely due to var-iability in the measurement approachused. The studies assessed different popu-lations, at different ages, and relied ondifferent measures. In some cases, differ-ent cut-off scores for the same instru-ment were applied across studies, as evi-denced by four different thresholds usedto determine depression on the BDI[Burden, 1980; Gowan et al., 1989;Lambrenos et al., 1996; Glidden andSchoolcraft, 2003]. Ignoring all of thisvariability in measurement, we com-puted a weighted average of reportedrates of individuals who passed a screen-ing threshold for current depression,resulting in an estimated rate of 23.6%,slightly lower but similar to the 29% fig-ure reported in Singer’s [2006] meta-analysis. This figure represents a roughestimate, across the 14 studies, of the per-centage of mothers of children with dis-abilities who report current symptomsthat put them over a threshold fordepression on a screening measure, andshould not be interpreted as the inci-dence rate of clinical depression.

Seven studies used an interviewformat to diagnose lifetime depression.However, these studies varied in termsof whether the data reported includedmajor depression only, all forms ofdepression, or all forms of mood disor-ders. The seven studies primarilyfocused on two populations, mothers ofchildren with fragile X syndrome andmothers of children with autism. Fourstudies reported rates of lifetime majordepression in premutation mothers ofchildren with fragile X syndrome, withreported rates of 20, 42, 42, and 78%.Four studies reported lifetime history ofdepression in mothers of children withautism, with reported rates of 10, 27,33, and 59%. Two studies reported life-time rates of 12 and 15% for ‘‘parents’’(gender not reported) of children withDown syndrome and two reported life-time rates of 30 and 38% for mothersof children with mental retardation ofunspecified etiology.

Comparisons with Other Mothersor Spouse

Seventeen studies included a sam-ple of mothers who did not have achild with a disability and comparedtheir depression status or symptomswith the mothers who did have a childwith a disability. Eleven (65%) reportedsignificant differences in depressivesymptoms; in each case, mothers ofchildren with disabilities reportedhigher rates of depressive symptomsthan mothers of children without dis-abilities. Fourteen studies included

fathers and compared their depressionstatus or symptoms with their spouse.Nine (64%) of the studies found thatmothers reported significantly highersymptoms of depression than didfathers, with the remaining five studiesshowing no differences. In both sets ofcomparisons (mother–mother, mother–father) all studies compared mean scoreson a rating scale; none compared actualrates of depression or risk for depression.

Correlates of Maternal DepressionWe were interested in the extent

to which selected child and family vari-ables were associated with elevatedreports of depressive symptoms. Eachstudy was coded with respect to fivechild variables (gender, age, IQ, diag-nostic group, and autism status/problembehaviors) and nine family variables(maternal education, maternal physicalhealth family income/SES, maternalIQ, acculturation/ethnicity, stress/well-being, maternal coping style, familysupport/cohesion, and number of otherchildren with disabilities in the family).We noted whether the study tested theassociation between the variables of in-terest (measured in a number of differ-ent ways, depending on the study) andif so, whether a statistically significantcorrelation (or difference in groups forcategorical variables) was foundbetween the variable and the measureof depression or depressive symptomsreported. The results are displayed inTable 2.

Two child variables—diagnosticgroup and autism/behavior score—werefound to be significantly related tomeasures of depressive symptoms. Thesetwo variables were closely related toeach other, in that most of the diagnos-tic group comparisons were betweenchildren with autism and children withother disabilities. In all cases where asignificant finding was reported, moth-ers of children with autism and/orbehavior problems had higher ratings ofdepressive symptoms.

Five maternal variables—stress/well-being, maternal coping style, mater-nal health, family support/cohesion, andnumber of other children with a disability(only assessed in one study)—were con-sistently related to ratings of depression.In all cases where a significant findingwas reported, higher ratings of depres-sion were found when mothers re-ported high levels of stress, less effectivecoping styles, poorer health, low familysupport/cohesion, and the presence ofmore than one child with a disability inthe family.

Table 2. Child and Maternal/Family Variables Associated withDepressive Symptoms

Variable

No. of PositiveAssociation/No. of Total Studiesa

PositiveAssociation (%)

Child variablesGender 0/9 0Age 2/13 15IQ 3/12 25Diagnostic group 9/15 60Autism or behavior problem 17/19 89

Maternal/family variablesMaternal education 0/8 0Income/SES 2/10 20Maternal IQ 1/5 20Acculturation/ethnicity 1/3 33Stress/well-being 7/10 70Maternal coping style 11/14 79Maternal health 5/6 83Family support/cohesion 12/14 86No. of other siblings with disability 1/1 100

aThe denominator is the total number of studies that examined the extent to which the variable indicated was related to depressivesymptoms. The numerator is the number of studies that found a statistically significant relationship between the variable and depressivesymptoms.


DISCUSSIONWe had two goals for this review,

to determine the nature and quality ofresearch on maternal depression anddepressive symptoms in developmentaldisabilities and, from that research, todetermine what could be said with con-fidence about the nature, frequency, andcorrelates of maternal depression. Inbrief, we conclude that because ofinconsistencies and other problems inthe way depression (or more accurately,depressive symptoms) has been meas-ured, we know little about clinicaldepression, and it is likely that the inci-dence of clinical depression in mothersof children with a developmental dis-ability may be overestimated. Despitethis major limitation, however, the liter-ature identifies some important corre-lates of depressive symptoms that sug-gest fruitful avenues for further researchand practice.

Measurement ChallengesA primary limiting factor of the

extant research is the way that depres-sion has been conceptualized and meas-ured. Most of the studies used one ofthe several brief paper-and-pencil self-ratings of depressive symptoms, themost common being the BDI [Beckand Steer, 1987] and the CES-D[Radloff, 1977]. The BDI consists of 21items, each of which is rated on a scalefrom 0 (absence of symptoms) to 3(severe expression of symptoms), for amaximum score of 63. A total score isobtained and the current version of theinstrument [Beck et al., 1996] suggestscut-off score guidelines of minimal(0–13), mild (14–19), moderate (20–28),and severe (29–63) depression. Theinstrument typically takes 5–10 min tocomplete. The CES-D consists of 20symptoms, each of which is rated interms of the frequency the symptom isexperienced, ranging from 0 (none ofthe time) to 3 (all of the time). A cut-offscore of 16 or higher indicates a need forfurther evaluation. The BDI asksrespondents to rate feelings in the past 2weeks, whereas the CES-D focuses onthe past week.

Neither the BDI nor the CES-Dwas designed as a diagnostic clinicaltool. Furthermore, they do not differ-entiate among the types of depressiondelineated earlier in this article as partof the DSM-IV criteria. The authors ofthe BDI describe it as ‘‘an indicator ofthe presence and degree of depressivesymptoms . . ., not as an instrument forspecifying a clinical diagnosis’’ [Becket al., 1996, p. 6]. Katz et al. [1999], in

a review of research on the BDI, con-clude that ‘‘inappropriate use of theBDI as a diagnostic instrument can leadto misleading information, which mayoverestimate the prevalence of depres-sive illness’’ (p. 924). Likewise, inreviewing the CES-D, Martens et al.[2006] conclude that the recommendedcut-off scores ‘‘often result in a highpercentage of ‘false-positive’ results(i.e., numerous individuals are identi-fied as depressed when, in fact, they donot meet the criteria for Major Depres-sive Disorder’’ (p. 135). Perreia et al.[2005] suggest that use of instrumentssuch as the CES-D may overestimatepathology in some multiethnic and for-eign-born populations, using Latinofamilies to demonstrate this point.Interestingly, the survey study in ourreview reporting the highest rate ofdepressive symptoms (49%) used theCES-D to assess depression in Latinomothers of children with disabilities[Blacher et al., 1997].

Diagnosis of depression typicallyrequires a trained psychologist or psy-chiatrist using a semi-structured inter-view and informed clinical judgment toconsider whether DSM-IV criteriaapply and the specific nature of any pre-senting mood disorder. The structuredclinical interview for DSM-IV axis dis-orders (SCID-I) [First et al., 2002] hasbeen referred to as the ‘‘gold standard’’for depression assessment [Jones et al.,2005]. The SCID interview is con-ducted by a trained clinician orresearcher, requires 40 min or more toadminister depending on the number ofsymptoms endorsed, and documentsboth current and lifetime history ofmood and anxiety disorders. In tworecent studies comparing BDI andCES-D scores with results obtainedfrom an SCID interview, individualswith scores below the threshold on theBDI or the CES-D appropriately werenot likely to be diagnosed with depres-sion on the SCID. However, of thosewho passed the threshold on the BDIor CES-D, only about 50% were diag-nosed using the SCID [Watson et al.,2004; Jones et al., 2005].

What is the Incidence of MaternalDepression in DevelopmentalDisability?

These findings suggest that instru-ments such as the BDI and CES-D arebest used for screening but cannot givepopulation estimates of clinical depres-sion. So, can we say anything about theincidence of clinical depression in de-velopmental disability? Our review of

the literature generated a rough estimateof an average of 23.6% of mothers ofchildren with disabilities passing athreshold for current depressive symp-toms, and Singer’s [2006] more formalmeta-analysis reported a figure of 29%.Given the limitations of the measuresused in the studies reviewed, both ofthese estimates may be too high andshould not be interpreted as rates ofclinical depression. The point preva-lence of clinical depression in commu-nity-based samples of females is �6%[Kessler et al., 2003; Ohayon, 2007]. Ifthe BDI and the CES-D have a 50%false-positive rate, this would put theestimated current prevalence for moth-ers of children with disabilities in therange of 12–15%. This figure is stillhigher than community-based rates,suggesting the possibility of an elevatedrisk for clinical depression in mothers ofchildren with disabilities, but probablynot as high as that suggested by previ-ous research.

Interestingly, however, the studiesthat used a semi-structured interviewand a clinical diagnosis of depressiondid not yield results comparable witheach other, even when limited to par-ticular population groups. Four studiesreported lifetime (not current) depres-sion rates of 20, 42, 42, and 78% inpremutation carrier mothers of childrenwith fragile X syndrome, and fourreported lifetime rates of 10, 27, 33,and 59 in mothers of children with au-tism. Two studies reported lifetime ratesof 12 and 15% for parents of childrenwith Down syndrome and two reportedlifetime rates of 30 and 38% for moth-ers of children with mental retardationof unspecified etiology. The sample sizeswere relatively small in most of thesestudies (range 17–74) and two differentinterview formats were used (DIGS andSADS). Also, two studies reported inci-dence rates in ‘‘parents’’ and it was notclear whether or how many fatherswere included in the studies. However,because of the methodology used, it isunlikely that the interviews yielded ahigh false-positive rate. The commu-nity-based rate of lifetime depression infemales is �21% [Kessler et al., 2003].Deleting the studies of parents (notmothers) of children with Down syn-drome or autism, a gross weighted aver-age of estimated lifetime maternaldepression across the remaining samplesis 32.3%. This suggests an elevated riskof lifetime depression for mothers ofchildren with disabilities compared withthe 21% community rate. However,nothing is known about the precipitating


events, timing, duration, or recurrenceof these depressive episodes.

Correlates of Depressive SymptomsAlthough we conclude that mea-

surement issues limit our ability to drawmeaningful conclusions about the inci-dence of clinical depression in mothersof children with disabilities, a largebody of research over several decadeshas shown measures such as the BDIand the CES-D to be psychometricallyrobust (good reliability and content va-lidity) and useful in rank-ordering indi-viduals in terms of felt depressive symp-toms [e.g., Okun et al., 1996; Katzet al., 1999; Shafer, 2006]. Thus, whilethey may not be especially informativein generating incidence rates, they canbe very useful in understanding the na-ture and correlates of depressive symp-toms. By virtue of their standardizedrating format and a quantitative scoringsystem, these measures in some wayslend themselves better to correlationaland comparative analyses than do cate-gorical diagnoses, so long as care istaken not to assume that the factorsstudied are necessarily correlates of truedepression.

Consistent with much prior liter-ature, our review showed that mothersare more likely to report depressivesymptoms than fathers as well as othermothers who do not have children withdisabilities. With regard to child varia-bles, gender, age, and IQ rarely wereassociated with depressive symptoms.However, an autism diagnosis or highratings on a measure of problem behav-ior were highly associated with depres-sive symptoms. These findings suggestthat it is especially difficult for mothersto deal with their children’s challengingbehavior, perhaps more so than dealingwith the physical and cognitive aspectsof disability.

With regard to maternal and fam-ily variables, maternal education, familyincome, maternal IQ, and ethnicityrarely were associated with depressivesymptoms, although only a few studiesexamined the latter two variables andnone in a substantive way. In contrast,studies frequently found an associationbetween depressive symptoms and vari-ous measures of maternal stress or well-being, maternal coping style, physicalhealth of the mother, and various meas-ures of family support and cohesion.These findings demonstrate the com-plex nature and effects of distress, andprovide strong evidence of the likelylinkages with coping strategies andinformal support.

CONCLUSIONS AND FUTUREDIRECTIONS

Maternal depression in familieswho have a child with a developmentaldisability has been studied extensivelyover the past 25 years. This research hasprovided important insights into thechallenges that mothers and other fam-ily members experience in coping.Many (in fact, most) of the studies didnot set out to diagnose clinical depres-sion. Yet in most cases, the papers typi-cally referred to their findings as reflect-ing maternal depression, as opposed tosymptoms of depression, distress, or sad-ness. This lack of theoretical groundingof studies, combined with the waysdepression (or more accurately, depres-sive symptoms) has been measured,complicates our ability to draw conclu-sions about the frequency of clinicaldepression as defined by DSM-IV.Comparisons across studies are furthercompounded by small sample sizes, var-iability in the nature of the child’s dis-ability, and lack of consistent attentionto child and family variables related todepressive symptoms. We conclude thatmothers may have a slightly elevatedrisk for clinical depression but that therisk may be lower than suggested by theliterature. It is clear, however, thatmothers of children with disabilities(and especially those whose childrenhave autism or exhibit more severebehavior problems) suffer higher levelsof distress (as indicated by higher ratingsof depressive symptoms) than motherswho do not have children with disabil-ities. Furthermore, we have consistentevidence of the important roles thatpersonal coping strategies and informalsupports play in mitigating distress anddepressive symptoms.

From a clinical perspective, thesefindings suggest the need for servicesand supports that help mothers not onlybe effective parents, but also that addressfeelings of distress that may emerge inthe context of parenting a child with adisability. Mothers with elevated symp-toms of depression are different fromthose who meet criteria for depressivedisorder, and thus treatment may needto be differentiated accordingly, espe-cially if mothers with MDE also experi-ence recurrent episodes. For some moth-ers, support will need to come from pro-fessionals who can provide counseling orpsychotherapy (helping mothers developeffective personal coping strategies) or,in some cases, medication to addressdepressive symptoms. Findings from thisreview also suggest that helping mothersbuild and strengthen informal support

systems is critical, both for motherswith clinical depression and for motherswith elevated levels of stress or sadness.This conclusion is consistent with otherliterature showing that families withstrong support systems are able to han-dle challenges more effectively thanfamilies with few supports [Dunst et al.,1994; Kersh et al., 2006; Plant andSanders, 2007] and that early interven-tion practices that build informal sup-ports can have positive benefits for bothfamilies and children [Thompson et al.,1997; Dunst, 1999; Hauser-Cram et al.,2001], as can programs such as parent-to-parent supports [Singer et al., 1999].This will require training of professio-nals, as many may not be aware ofeffective strategies to build informalsupports or may not feel that this workis a high priority relative to direct serv-ices to children. For example, a recentsurvey of parents of children with de-velopmental disabilities reported thatparents gave the lowest ratings of satis-faction with health care services to theirphysician’s ability to understand theimpact of disability on their family or tohelp connect them with other families[Liptak et al., 2006].

From a research perspective, thesefindings suggest the need for a newgeneration of research on maternaldepression and developmental disabil-ities. This research needs to incorporategold standard tools for assessing trueclinical depression, gathering data onsuch factors as lifetime history, severity,type, onset, precipitating factors, dura-tion, treatments, and recurrence. Sam-ples need to be of sufficient size andrepresentative of the populations stud-ied, not samples of convenience identi-fied through clinic or service programs.More attention needs to be paid to thechild, maternal, family, and life eventvariables likely to affect depression anddepressive symptoms, with comparablemeasures across studies to allow greaterconfidence in drawing conclusionsabout the correlates of depression.

As new findings emerge on thebiology of maternal depression, inevita-bly this research will lead to hypothesesabout those mothers with increasedbiological or genetic susceptibility fordepression [Flores et al., 2004; Kendleret al., 2005; Leonardo and Hen, 2006].For example, it has already beenhypothesized that premutation carriermothers of children with fragile X syn-drome may have an increased vulner-ability to mood and anxiety disordersdue to biological aspects of carrierstatus [Hagerman and Hagerman, 2002].


Biological variables and environmentalvariables will increasingly need to beintegrated in future research. Mothers atgreatest risk for depression may be thosewho have combinations of risk factorssuch as identified biological vulnerabil-ity, a child who exhibits a high rate ofbehavior problems, few personal copingstrategies, and inadequate informalsupport systems. Finally, interventionresearch is needed to provide clear evi-dence regarding the programmatic andintervention variables most likely toprevent or reduce the severity ofdepressive symptoms. n

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maternal depression and developmental disability: research critique

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