The Effect of Quality of the Relationship Between Mothers and Adult Children With Schizophrenia, Autism, or Down Syndrome on Maternal Well-Being: The Mediating Role of Optimism

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The Effect of Quality of the Relationship Between Mothers and Adult Children With Schizophrenia, Autism, or Down Syndrome on Maternal Well-Being: The Mediating Role of Optimism
  Alllerican Journp) f Orthopsychialry2004, Vol. 74, No. I, 14-25Copyrighl2004 hy the EducaliOrnlI ublishing Fnundntion0002-9432/04/$12.00 DOl: 10.103710002-9432.74.1.14 The Effect of Quality of the Relationship Between Mothersand Adult Children With Schizophrenia, Autism, or DownSyndrome on Maternal Well-Being: The MediatingRole of Optimism Jan Steven Greenberg, hD, andMarsha Mailick Seltzer, PhD University of Wisconsin-Madison Marty Wyngaarden rauss, PhD Brandeis University Rita Jing-Ann Chou, PhD, andJinkuk Hong, PhD University of Wisconsin-Madison This article nvestigates he effects of the quality of the relationship between maternal aregivers and heir adult child with disabilities on maternal well-being and whether l1is effect s mediatedby dispositional ptimism. Mothers caring for an adult child with Down syndrome n = 126),schizophrenia n == 292), or autism (n = 102) were surveyed. Mothers of adults withschizophrenia nd autism had better psychological well-being when the mother/adult childrelationship was positive. but this ~ffect was mediated otally or partially by optimism. For all3 groups, optimism was related o better mental and physical health. The findings highlight the importance f dispositional optimism, a psychological esource hat has been virtually gnored in studies of fanilly care~vers of adults with disabilities. During the past decade, here has been n emerging literature on he well-being of parents aring or adultchildren with disabilities, eading o efforts o identifysocial resources hat mitigate caregiver tress. Somepast esearch as nvestigated he role of social sup-port from family and riends n maintaining he well-being of family caregivers. n these studies, owever,the role of the adult with disabilities as a potentialsource of support o his or her parent caregiver has JanSreven Greenberg, PhD, and Marsha Mai1ick Seltzer,PhD, Waisman Cenrer and School of Social Work, Universityof Wisconsin~Madison; Marty Wyngaarden Krauss, PbD,Heller School, Brandeis University; Rita Jing-Ann Chou,PhD, School of Social Work, University of WlSconsin~Madison; Jinkuk Hong, PhD, Waisman Cenrer, University ofWisconsin~Madison.Preparation of this anicle was supported by NationalInstiture of Mental Health Grant ROl MH55928, NationalInstiture on Aging Grant ROI. AGO8768, National Institureof Child Health and Human Development Grant T32HD07489, and grants rom the Rehabilitation Research andTraining C~nter on Aging With Developmental Disabilitiesat the University of lllinois at Chicago.For reprints al1d orrespondence: Jan Steven Greenberg,PhD, Waisman Center, University of Wisconsin~Madison,1500 Highland Avenue, Room 555, Madison, WI 53705. largely been overlooked. Research n the quality ofthe parent/adult hild relationship n later ife suggeststhat most older parents and adult children enjoy aclose and supportive elationship, which enhances he psychological well-being of parents (Blieszner &Bedford, 1996; Rossi & Rossi, 1990). A parallel ineof investigation as been conducted with family care-givers of frail elders, which similarly has found thatthe presence f a close relationship etween he care-giver and care recipient educes urden and enhancescaregiver well-being (Cicirelli, 1993; Li, 2000;Townsend & FrankS, 995; Walker, Martin, & Jones,1992). However, only a few studies ave extended he investigation of the quality of the parent/adult childrela,tionship o the context of caring or an adult childwith disabilities (Bulger, Wandersman, Goldman,1993; Greenberg, 1995; Heller, Miller, & Factor,1997). Building on this work, we investigate theeffects of the quality of the mother/adult child rela-tionship on maternal hysical and psychological well- being and ask whether his effect s similar or differentacross hree care-giving ontexts: mothers caring foran adult child with Down syndrome, chizopht~nia,or autism.We selected hese disabilities because f the differ- ences n the timing, symptoms, and trajectories of 14  OPTIMISM AND MO11lER/ADULT CffiLD RELA110NSHJP 15these three disorders, all of which may affect theparent/adult child relationship (Seltzer, Greenberg,Floyd, Pettee, & Hong, 2001). First, whereas Downsyndrome s diagnosed at birth and autism s gener-ally diagnosed n the first few years of life, schizo-phrenia s typically diagnosed uring ate adolescenceor early adulthood. Consequently, hese hree groupsof parents must cope with tl}eir "hild's diagnosis atdifferent imes in th~ir own life course--early adult-hood for parents whose son or daughter has Downsyndrome or autism, and midlife for parents whose son or daughter as schizophrenia. econd, uring theearly course of both autism and schizophrenia, ehav- ior problems hat are difficult to manage re common.In contrast, cluldren with Down syndrome end tohave ess severe and ess requent behavior roblems. Finally, the trajectory of the symptoms of each ofthese hree disabilities s quite distinct. The behaviorproblems of persons with DoW1} yndrome, ypicallyrelatively mild, are quite stable over the life course{Zigman, Seltzer, & Silverman, 1994), whereas hesymptoms associated with autism, although nitiallysevere, abate o some extent as individuals mOveinto adulthood (Seltzer, Krauss, Orsmond, & Vestal, 2000). In contrast, he course of schizophrenia smore cyclical and ess predictable, with some adultswith ~chizophrenia ecoming ess symptomatic inmiddle and older adulthood, whereas thers show ei-ther a stable or a worsening course Harding, 1988).We expected hat hese differences n the timing ofthe diagnosis, everity of symptoms, nd rajectory ofsymptoms of the three disabilities would lead to dif-ferences n the quality of the mother/adult hild rela-tionship, he extent o which the mother has an opti-mistic or pessimistic outlook on the future, andmaternal physical and psychological well-being. Inour eal'lier work, which examined mothers of hetero- geneous iagnostic groups of adults with mental ll-ness and mental retardation, we found that mothers of adults with mental llness eported greater pessimismabout he future and a poorer relationship witll theirson or daughter han did mothers of adults withmental retardation Greenberg, Seltzer, & Greenley,.1993; Seltzer, Greenberg, & Krauss, 1995; Seltzer, Greenberg, Krauss, & Hong, 1997). We expect thatthese ifferences will be even more pronounced when mothers of adults witl} the specific diagnoses f schiz- ophrenia nd Down syndrome re compared. We fur-ther predict hat he profile of motllers of adults withautism will be nudway between he other wo groupsof maternal caregivers, ecause autism shares some characteristics with schizophrenia and others withDown syndrome. On he one hand, silnilar to mothers of adults with schizophrenia, mothers of adults Witllautism must manage heir child's often severe behav- ioral symptoms, wInch may ake a long-tenn toll onmaternal well-being. On the other hand, simjlar tomothers of adults with DowD syndrome, mothers ofadults with autism have had many years iD he care- giving role to accommodate o their child's specialneeds and thus may have earned how to cope withtllis long-term parenting challenge.In this article, we also examjne whether here aredifferences n the pathwa.ys y which Ile quality of themother/adult hild relationship ffects maternal phys-ical and psychological well-being. Specifically, weexamine he role of dispositionaloptinnsm as poten-tially mediating the influence of the quality of themother/adult child relationship on maternal well-being and ask whether his effect s similar or differentacross he hree caregiving ontexts Down syndrome,schizophrenia, 01: autism). Dispositional optimjsmrefers to an individual's general nclination towardexpecting positive events n life (Scheier & Carver,1985, 1987) nd s distinct rom domain-specific opti~mjsm, which efers o optimjsm oward specific utureevents, uch as recovery romsUl'gery. here sa largebody of iterature showing hat dispositionaloptimjsmplays an important role in maintaining mental andphysical health of caregivers or older or physicallyill persons Given et al., 1993; Haynie, 1999; Hooker,Monahan, Bowman, Frazier, & Shifren, 1998). How- ever, ittle is known about he role of optimism nparental caregivers of adult children with develop-mental disabilities or mental llness.We expect that the effect of the quality of themother/adult child relationship on maternal well-being will be mediated by di~positional9ptimism ormothers of adults with schizophrenia nd mothers ofadults with autism but not for mothers of adults with Down syndrome. We base his expectation on differ-ences n the manifestation of these hree disabilitiesacross he life course. A prominent symptom n bothautism and schizophrenia s difficulty with socialrelationships, ncluding a qualitative impairment' nreciprocal social interactions and an inability ormar~edly imited capacity o respond o the needs ofothers. Parents re aced with the task of defining their expectations or their relationship with their adultchild, aking nto account he difficulties that personswith autism and schizophrenia ave in maintainingsustained ocial relationships. The behavioral prob-lems hat are common during he early years ollowing the diagnosis f autism and schizophrenia urther chal- lenge he Gapacity f the parent o maintain a mutuallysatisfying elatiollShip with her child with disabilities.  GREENBERG, SELTZER, KRAUSS, CHOU, AND HONG 6 2. The quality of the mother's elationship with heradult child will be positively related to well-being.3. Higher levels of optimism will be related tobetter mAternal well-being.4.For mothers of adults Witll schizophrenia andmotllersof adults with autism but not. or moth-ers of adults with Down syndrome, evel of op-timism will mediate he effect of the quality oftlle mother/adult child relationsllip on maternalwell-being. MethodDesign The hope of ever having a normative parenllchild ela- tionship n which the child is able o reciprocate eel-ings of affection, trust, and understanding oward heparent may be a very distant dream or parents of indi. viduals with autism or schizophrenia.However, some ndividuals with autism and schiz-ophrenia become ess mpaired n social elationshipsas they mature or as a result of improved reatment.Parents may find tllat as heir son or daughter rowsolder, he or she becomes more aware of and respon.sive o the parent's houghts nd eelings park, 2001).Plior research uggests hat when children do betterthan expected, his has a powerful effect on parental,in particular maternal, well-being (Ryff, Schmutte, &Lee, 1996). When he quality of a relationship with an adult child exceeds he parent's earlier expectations,this may similarly have positive effects on parentalwell.being, ncluding a renewed hopefulness abouttheir chifd's future. Parents may even become more optimistic tllat other ife challenges will turn out forthe better. Thus, we expect hat when an adult childwith autism or schizophrenia s able o respond o hisor her mother's needs or affection, understanding,and trust (in other words, show recognition of themother's needs), his may ead mothers o feel moreoptimistic and hopeful, which, in turn, may enhancematernal well-being. If this is the case, optimismwould mediate he association etween elationshipquality and maternal well-being.We have a different set of expectations or parentsof adults with Down syndrome. Such children have a less prominent profile of behavior problems and psy. chopathology across he life course Dykens, 1998).During childhood and adolescence, arents of chil.dren with Down syndrome enerally ave a wanD ex. change of emotion with their child and can realisti.cally expect his type of relationship o continue ntothe future because of the relative stability in the tra.jectory and symptoms associated with Down syn-drome. Therefore, n the case of Down syndrome,there s greater continuity n the parentJadult hild re.1ationship ver time, so that the quality of the rela.tionship n adulthood may be ess salient n detennin-ing maternal eelings of optimism.In summary, we hypothesized he ollowing: The samples of mothers of adults with Down syndrome,.schizophrenia, nd autism were drawn rom independent ut related tudies. The families of adults with pown syndromewere sampled from a larger longitudinal study of agingmotl1ers aring for an adult child with mental retardation.Over the time period of the study (1988 to 2000), eightwaves of data were collected. These amilies met two crite-ria when nitially recruited nto the study: The mother wasage 55 or older, and he adult with mental etardation ived at home with her. One third (37.1 %) of the san1ple ad Downsyndrome, hesubsample ncluded n the present analysis.Families of adults with schizophrenia ad to meet wo crite-ria when nitially recruited: The mother was age 55 or older,and he adult had a diagnosis of schizophrenia or schizoaf-fective disorder. The families of adults with autism weresampled rom a larger study of famiiies of adolescents ndadults with autism. The sample used n this analysis was re-stricted o mothers age 55 and older who had an adult childage 22 and older.All three studies used dentical ecl"Uitment trategies. he majority of participants were recruited with the assistance fthe state or county agencies esponsible or providing ser-vices o persons with either mental etardation/developmentaldisabilities, autism, or schizophrenia. All sample memberswere volunteers.Mothers participated n an ll-home interview and com-pleted a set of self-administered tandardized measures. he data used or this article are rom the irst wave (1999-2000)of the studies of mothers of adults with schizophrenia and mothers of adults with autism. For the mothers of adults with Down syndrome, he optimism scale was adl:\ed o the nter- view protocol at the hird data collection point (1991-1992),and his s therefore he wave of data used n this analysis. others of adults with schizophrenia will dis-play the least favorable profile with respect oquality of the relationship, optimism, depres-sion, positive well-being, and physical health.Mothers of adults with Down SYI1drome illshow he most avorable profile, with mothersof adults with autism n the n:riddle. Sample The samples n the present nalyses ncluded 126 mothersof adults with Down syndrome, 92 mothers of adults withschizophrenia, nd 102 mothers of adults with autism. The  OPTIMISM AND MOTHER/ADULT CmLD RELATIONSHIP17Table] Demographic Cha.racteristics Downsyndrome(n = 126) Schizophrenia (n = 292) Autism (II = ]02)dfharacteristic 69.31.461.169.31.553.1 65.1 1.860.8 12.48*~'"6.50**"1.62 2,5]7 2,516 2,5]73.50*d52.21 **.51.33***.57.09***16].] 34.] 3.3 90.5 74.041.3 2.5 45.269.634.73.133.3 2,5172,5172,5172..517Characteristics f mother Aoe ' Education"Married (%)9haracteristics of adult childGender % male) Age HealthbCoresidence % at hOI11e)"Education coded 0 = less han high school, 1. = high school graduate, = some ollege or college graduate, 3 = some graduate chool. bHealth oded = poor, 2 = fair, 3 = good, = excellent. "Post oc contrasts were significant betweenautism and Down syndrome, and between autism and schizophrenia. dpost hoc contrasts were significant betweenschizophrenia and Down syn ):rome. "Post hoc contrasts were significant between chizophrenia nd Down syndrome,aJld between chizophrenia nd autism. fPost hoc contrasts were significant between Down syndrome and schizophrenia, and between Down syndrome nd autism. *p < .05. **p < .01.. ***p < .001.. characteristics of the three samples appear in Table 1. Themothers of adults with autism were younger and had higherlevels of education tlJan mothers of adults with Down syn-drome and schizophrenia. There was no difference amongthe three groups in the mothers' marital status, with approx-imately 60% of the mothers currently married.In all three samples, mothers who participated were morelikely to be caring for an adult son than a daughter with dis-ability. The adults with schizophrenia were significantlyolder and more likely to be in poorer health than the adultswitlJ Down syndrome or autism. The adults with Down syn-drome were most likely to be living in the parental honJe atthe time of the interview, whereas the adults with autismwere least likely to be coresident Measures The dependent variables in this analysis were measures ofpsychological and physical well-being. There is increasingrecognition that mental health is not simply the absence ofdistress but also the presence of positive mood (Ryff,. 1989).Furthermore, growing evidence suggests that positive andnegative dimensions of mental health may be explainedby different mechanisms (Kramer, ] 997; Lawton, Moss,Kleban, Glickman, & Rovine, 1991). Thus, psychologicalwell-being was operationalized by measures of positive psy-chological well-being as well as by measures of psychologi-cal distress. Positive psychological well-being was mea-sured by the sum of three subscales from Ryff's (1989)measure of psychological well-being (i.e., Personal Growth,Self-Acceptance, and Purpose n Life), which were includedin all three studies. Each subscale consists of five items, withrespondents rating their level of agreement for each item ona 6-point scale (1 = strongly disagree to 6 = strongly agree). The Cronbach's alpha reliabilities were .80, .86, and .88 formothers of adults with Down syndrome, chizophrenia, ndautisn1, espectively.Psychological distress was measured y Radloff's (1977) Center for Epidemiologic Studies-Depression (CBS-D)Scale, which ranges rom 0 to 60. TheCronbach's alpha re-liabilities were :88, .89, and .89 for mothers of adults withDown syndrome, schizophrenia, and autism, respectively.Physical health was measured y a single item n which themother rated her health along a 4-point scale anging fromI (poor) to 4 (excellent).The quality of the relationship was measured y the Posi-tive Affect Scale (Bengtson & Schrader, 1982), which is a10-item scale assessing he quality of the relationship be-tween he mother and her adult child with disabilities, ndi-cated by ratings of trust, ntimacy, understanding, airness,and mutual respect Each item is measured on a 6-pointscale, with higher scores ndicating better relationship qual- ity. Five items ask he mother o rate her eelings of trust, n-tin1acy, nderstanding, airness, and respect oward her sonor daughter. while five other tems ask for the mother's per-ception of the extent o which her son or daughter displaysfeelings of trost, ntimacy, understanding, airness, and re-speCt oward her. The Cronbach's lpha reliabilities for thequality of relationship cale or the hree samples of mothersof adults with Down syndrome, chizophrenia, and autismwere 88, .90, and 85, espectively.Dispositional optimism was measured y a slightly modi- fied version of Scheier rid Carver's 1985) Life OrientationTest (LOT). Whereas he srcinal LOT uses a 5-point re-sponse category, with the middle point being neutral, weused a 4-point response caling witl10ut a neutral category(0 = strongly disagree o 3 = strongly agree). The eight-item scale score ang~ from 0 to 24. The Cronbach's alpha  GREENBERG, SELTZER, KRAUSS, CHOU, AND HONG 8well-being. n al.l he analyses, e controlled or significantbackground differences an10ng he three groups (Inotller's age and education, he adult child's gender and health, andwhether he adult son or daughter ived at home). We did not include the adult chi]d's age as a covariate because of thehigh correlation n the three groups between hild's age and mother's age (ranging rom .58 to .78). If the overall F testindicated a significant maill effect or differences among he three groups Down syndrome, chizophl.enia, Jld autism),post hoc contrasts were conducted mong alJ pairs of groups to identify which were significantly different from eachother.Hierarchical egression was used o investigate our nexttwo hypotheses, hich examined whether he quality of themother's relationship wit11 er adult child and dispositional optimism were predictive of maternal well-being. The fourth hypothesis, amely hat optimism mediates he relationshipbetween he quality of the parent/adult hild relationship ndwell-being, was ested with pr()cedures eveloped by Baronand Kenny 1986). reJiabilities were. 75, .81, and .87, respectiveJy, for mothersof aduJts with Down syndrome, schizophrenia, and autismand are comparable to those reported in the use of a 5-pointresponse scaling.1nrernalizing and externalizing behaviors of the aduJt withdisabilities, conceptualized as major sources of stress forthese maternal caregivers, were assessed by maternal com-pletion of the Inventory for Client and Agency Planning(1CAP; Bruininks, Hill, Weatl.1ern.1an, Woodcock, 1986).Exrernalizing bel.1aviors nclude behavior that is hurtfuJ toothers, destructive to property, and disruptive. Internalizingbehaviors consist of behavior that is hurtful to self, unusualor repetitive, and withdrawn or inattentive. In completingthe 1CAP, the mother was asked to indicate whether her aduJtson or daughrer displayed each type of bel.1avior. The scorefor each behavior domain was a count of the number of cur-rent behavior problems within each domain.Background variables included the mother's and adult'sage (in years), the mother's education (0 = less than highschool to 3 = some graduate school) and marital status(I = married; 0 = otherwise), the gender of ~e adult withdisabilities (I = female; 0 = male), tile adult's health(I = poor to 4 = excellent), and whether the adult coresidedwith the parent (1 = coresidence; 0 = otherwise). Results For our first research question, we hypotl1esizedthat motl1ers of adults with schizophrenia would re-port he least avorable profile, mothers of adults with Down syndrome tl1e most favorable profile, andmothers of adults with autism n the middle. As shown in Table 2, contrary to our expectations, l1ere wereno differences among he three groups of mothers n Analysis Analysis of covariance as used o test our first hypothe-sis, which examined differences mong he three groups ofmaternal caregivers n the quality of the adult child/parentrelationship, optimism, and physical and psychological Table Mean-Level Differences Downsyndrome(Ii = 126) Schizophrenia (11 292)Autism(II = 102)ariableFdf 19.64*** 0.85.07 45.67.60 47.5 6.28 16.34.20 1..00 6.1 3.3015. 10.2 8.6110.48.45 0.67 1.102,5021.8 10.38 71.3 11.05 73.311.55 Quality of relationshipM SD OptimismM SD Depressive ymptomsM SD Psychological ell-beingM SD PhysicaJ ealthbM SD 3.00.712.90.742.7 0.752.67 2,511Note. Table presents adjusted means, with controls for mother's age and education, child'sgender and health, and whether son or daughter coresides with parent..Post hoc contrasts were significant between Down syndrome and schizophrenia, and betweenDown syndrome and autism. bphysical health (I = poor, 2 = fair, 3 = good, 4 = excellent).***p < .001.
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