less stress, more rewarding: parenting children with down syndrome
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This article was downloaded by: [University of Lethbridge]On: 03 October 2014, At: 21:20Publisher: RoutledgeInforma Ltd Registered in England and Wales Registered Number: 1072954Registered office: Mortimer House, 37-41 Mortimer Street, London W1T 3JH,UK
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Less Stress, More Rewarding:Parenting Children With DownSyndromeRobert M. Hodapp , Tran M. Ly , Deborah J. Fidler &Leila A. RicciPublished online: 18 Nov 2009.
To cite this article: Robert M. Hodapp , Tran M. Ly , Deborah J. Fidler & Leila A.Ricci (2001) Less Stress, More Rewarding: Parenting Children With Down Syndrome,Parenting: Science and Practice, 1:4, 317-337, DOI: 10.1207/S15327922PAR0104_3
To link to this article: http://dx.doi.org/10.1207/S15327922PAR0104_3
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Less Stress, More Rewarding:Parenting Children
With Down Syndrome
Robert M. Hodapp, Tran M. Ly, Deborah J. Fidler,and Leila A. Ricci
SYNOPSIS
Objective. We argue that, compared to other children with disabilities, parentsof children with Down syndrome may experience less stress and more rewards.Design. After reviewing changes in studies examining parenting children withdisabilities, we note how specific genetic disorders predispose children to dif-ferent, etiology-related behaviors, which in turn predispose their parents toparticular reactions. We then survey studies of both stress and rewardingness inparents of children with Down syndrome versus children with other disabili-ties. Results. Parents of children with Down syndrome report less stress andmore child-related rewards than parents of children with other disabilities; in-deed, parents of children with Down syndrome may feel equally rewardedcompared to parents of same-aged typical children. Conclusions. By comparingfeelings of parents of children with Down syndrome versus children with otherdisabilities, we begin to understand which child behaviors bring about whichparental reactions. Such information provides both theoretical and practicalbenefits to professionals interested in parenting.
INTRODUCTION
Compared to only 30 years ago — when parents were often advised toinstitutionalize their offspring — children with disabilities now over-whelmingly live in their family homes. In line with such societalchanges, more studies have examined the families of these children. Par-ent and family studies of children with disabilities, which accounted for1% of articles in the late 1970s, currently comprise approximately 20% ofbehavioral articles in developmental disabilities (Glidden, Kiphart, Wil-loughby, & Bush, 1993).
But even as more articles appear on families of children with disabili-ties, balanced views of such families remain relatively rare. Whereas thenegative effects of children with disabilities on their parents and familieshave been examined (see Hodapp, 2002), few studies explore potential
PARENTING: SCIENCE AND PRACTICE Copyright © 2001, Lawrence Erlbaum Associates, Inc.October–December 2001 Volume 1 Number 4 Pages 317–337
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positive effects and fewer still combine both positive and negative out-comes. In addition, why or even whether some children with disabilitiesmight prove easier to parent has received only sporadic attention.
In this article we argue that, compared to other children with disabili-ties, children with Down syndrome may help their parents to experienceboth less stress and more rewards. To understand the stress – reward issue,however, it is first necessary to briefly describe research on parenting chil-dren with disabilities and to note how behavior of children with differentgenetic syndromes might relate to effects on parents. We then review thestress and rewards experienced by parents of children with Down syn-drome, before examining unexplored issues concerning the stresses andrewards of parenting children more generally.
RESEARCH ON PARENTING CHILDRENWITH MENTAL RETARDATION
Besides increasing numbers of parent – family articles, the past 40 yearshave witnessed shifts in the topics studied. Studies performed during the1960s and 1970s can be contrasted to those of the 1980s and 1990s along twomain themes.
From Pathology to Stress and Coping
When the modern field of parenting children with disabilities arose inthe early 1960s, researchers considered parenting the child with mental re-tardation as a negative experience. In comparing these families to those ofsame-aged typically developing children, studies of children with mentalretardation concluded that:
1. Mothers were more often depressed (Friedrich & Friedrich, 1981),preoccupied with their children, and had more difficulty handlinganger at their children (Cummings, Bayley, & Rie, 1966).
2. Fathers experienced “role constriction” (Cummings, 1976) and moredepression and neuroticism (Erickson, 1969).
3. Couples showed lower levels of marital satisfaction (Friedrich &Friedrich, 1981).
4. Families were considered to be “economically immobile” (Farber,1970) and “stuck” in earlier stages of family development (Farber,1959).
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By the early 1980s, this more negative view changed, as researchers in-creasingly observed that some parents and families coped well, whereasothers did not. Crnic, Friedrich, and Greenberg (1983) best expressed theemerging view when they conceptualized the child with mental retarda-tion as a stressor in the family system. By using the metaphor of a “stres-sor,” the child with mental retardation could bring about either negative orpositive effects. These children could bring families together and help eachindividual grow, or instead could cause problems for individual familymembers or the family as a whole.
As a result of this change in perspective, the past 15 to 20 years haveseen more positive views toward parents and families of children with dis-abilities. Granted, such a perspective might better be described not as“positive” but as “less negative” (Helff & Glidden, 1998); similarly,health-promoting or “salutogenic” approaches are generally lacking inmost parenting studies (Antonovsky, 1993). Still, few would argue that achange has occurred in professionals’ views toward families of childrenwith disabilities.
From Group Differences in Pathologyto Within-Group Correlates of Coping
A related change involves within-group studies. With the arrival ofstress and coping perspectives, researchers began to search for specificprotective factors in parents, in social support systems, or in childrenthemselves that might lead to more adequate parental coping.
For example, there now seems consensus that both parents’ problem-solving styles and social support aid in successful coping. Parents whotake a more active, problem-solving approach to rearing their child withdisabilities experience less depression than “emotion-based” copers (i.e.,those who either dwell on or, conversely, deny all emotions; Seltzer, Green-berg, & Krauss, 1995; Turnbull et al., 1993). Similarly, parents with larger,more effective support systems do better. To take the most obvious exam-ples, mothers in good versus bad marriages cope better, as do parents intwo-parent families and those of higher socioeconomic status (SES; seeShapiro, Blacher, & Lopez, 1998, for a review).
In addition, parental coping seems influenced by factors intrinsic to par-ticular children with disabilities. Children who are more dependent ontheir parents — as well as those showing a lack of social responsiveness,unusual caregiving demands, or aggressiveness — are most problematicfor parents (Beckman, 1983, 1991; Frey, Greenberg, & Fewell, 1989; Minnes,1988a). A recent study further indicates that the direction of effects likelyruns from child behavior to parent reaction. Keogh, Garnier, Bernheimer,
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and Gallimore (2000) examined families when children with disabilitieswere 3, 7, and 11 years old. Using path analyses, they showed that thechild’s higher levels of behavior problems, greater degrees of cognitive im-pairment, and lower levels of personal-social competence affected parentand family adaptation. In contrast, parental changes and adaptations ofthe family routine usually did not influence later child behaviors. None ofthese studies, however, examined parents of children with specific types ofmental retardation.
DIRECT AND INDIRECT EFFECTSOF GENETIC MENTAL RETARDATION DISORDERS
Over the past 10 to 15 years, researchers have increasingly appreciated thatspecific genetic causes of mental retardation predispose children to differ-ent behaviors (Dykens, 1995; Hodapp & Dykens, 1994; O’Brien & Yule,1995). Until recently, this new emphasis on etiology-related behaviors fo-cused on behaviors of the children themselves, the so-called “direct ef-fects” of genetic mental retardation disorders (Dykens, 1999). For such dis-orders as Down, fragile X, Prader–Willi, and Williams syndromes, studieshave revealed many etiology-related maladaptive behaviors, as well asparticular cognitive, linguistic, and adaptive strengths and weaknesses(Dykens, Hodapp & Finucane, 2000; Udwin & Dennis, 1995).
In considering the nature of direct effects, it is important to considerboth between-group and within-group differences. Essentially, geneticdisorders predispose individuals to one or more behaviors (Dykens,1995). On the group level, groups with a specific disorder will thus showthat disorder’s characteristic, etiology-related behaviors much more of-ten than others with mental retardation in general. At the same time,however, within-group variation exists. Just as, for example, every childwith Down syndrome does not show the syndrome’s characteristicepicanthal folds around the eyes (Pueschel, 1990), so too every child withany disorder will not necessarily show that disorder’s “characteristic”behaviors. Variation exists both between and within groups, and geneticdisorders are best thought of as predisposing — not determining — be-havior in affected individuals.
Along with their direct effects on behavior, genetic mental retardationsyndromes may have other effects as well. Essentially, if a particular disor-der predisposes most affected individuals to certain characteristic behav-iors, others in the child’s environment may respond to those behaviors inpredictable ways. Thus, if children with a specific genetic disorder are pre-disposed to be more (or less) social and “people-oriented,” or to have low
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(or high) amounts of maladaptive behaviors, then others may feel and actdifferently toward them. We have referred to these potential connectionsbetween child behavior and adult reactions as the indirect effects of geneticmental retardation disorders (Hodapp, 1999).
Theoretically, indirect effects follow closely from Bell’s (1968) inter-actionism, especially the sense that children’s behaviors often elicit specificbehavioral reactions from adults. Compared to the nonabused children ina family, for example, abused children are more likely to be born prema-turely; to have disabilities such as mental retardation and hyperactivity; orto have temperamental characteristics such as irritability, fussiness, anddependency (see Pianta, Egeland, & Erickson, 1990). Conversely, why dosome children coming from the most chaotic, impoverished, and unstableof households grow up relatively unscathed? As Werner (1993) showed inher 4-decade study of children born on the island of Kauai, such childrenwere more likely to exhibit a positive social orientation and to be alert andautonomous even as toddlers. Grade-school teachers later reported thatthese children got along well with peers, and such children were often ableto attract substitute parenting from adults in their environments. In short,then, behaviors of children themselves make more likely certain behav-ioral and emotional reactions from parents and other adult interactors.
Compared to other children with disabilities, children with Down syn-drome may also display behaviors that more often elicit certain reactionsfrom others. As we illustrate later, one potential indirect effect of Downsyndrome involves parental feelings. But before discussing in greater de-tail why such effects might occur, we first examine whether parents of chil-dren with Down syndrome do feel less stress and more rewards.
STRESS AND REWARDINGNESS IN PARENTSOF CHILDREN WITH DOWN SYNDROME
Extending Selye’s (1978) concept of human stress, we here define parentand family stress as a “pressure or tension in the family system” that insome ways creates a “disturbance in the steady state of the family” (Boss,1988, p. 12). Often arising out of predictable or unpredictable family hard-ships or changes, the effects of stress can be buffered by different parentalpersonalities (as in active coping), different family types (McCubbin &McCubbin, 1989), or family resources (Minnes, 1988b). The importantpoint is that stress is felt or experienced tension that disrupts family rou-tines and norms.
An additional complication concerns the measures used to examineparent and family stress. As Glidden (1993) noted, the field does not agree
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on a single measure of stress, and some measures have several forms (e.g.,the Questionnaire on Resources and Stress). Even the most psychometr-ically sound measure, the Parenting Stress Index (PSI; Abidin, 1995), sums“child-related” and “parent-related” domains, making unclear what “pa-rental stress” really is. In addition, many studies examine related con-structs such as levels of parental depression or malaise.
Rewardingness, in contrast, concerns the feelings of gratification andreinforcement brought about by parenting a child. Less well-known thanstress, rewardingness involves feeling loved and appreciated by yourchild, that the child is in some sense returning the parents’ love and at-tention. Such feelings of closeness and reinforcement also probably relateto parental feelings of control and efficacy. In addition, rewardingness isusually measured as the “absence of reinforcement stress.” In Abidin’sPSI, one of the six subscales of “child-related stress” concerns the degreeto which the child is not rewarding. Parents rate (on 5-point scales) suchstatements as “My child rarely does things for me that make me feelgood” and “When I do things for my child, I get the feeling that my ef-forts are not appreciated very much.” After reverse-scoring severalitems, lower scores indicate that the parent feels that the child is more re-warding. Although one could argue that the absence of reinforcementstress should not be equated with the presence of rewardingness, the twohere seem synonymous. Indeed, parents who strongly disagree withthese statements — saying that their children are making parents feelgood and feel that their efforts are appreciated — would seem to experi-ence both lower reinforcement stress and more rewards from their chil-dren. Although we discuss later theoretical and measurement issues in-volving both stress and rewardingness, such issues must be kept in mindas we review the relevant studies.
Parental Stress
In considering whether less stress exists among parents of children withDown syndrome, one begins by asking “compared to whom?” Table 1shows that studies examining stress in parents of children with Down syn-drome vary widely in control or contrast groups. Some studies comparethese parents to parents of same-aged children with autism or with psychi-atric problems. Others compare parents of children with Down syndrometo parents of children with other disabilities, with other etiologies of men-tal retardation, or with heterogeneous causes (or no clear causes) for theirmental retardation. Still other Down syndrome studies compare to parentsof typically developing children of the same chronological or mental ages.
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TABLE 1Studies of Parental Stress in Down Syndrome
Author(s) Participants Demographicsa Main Findings
QRS (Holroyd, 1974):b
Holroyd & McArthur(1976)
Aut N = 22; Clinic N = 32DS N = 22; Ages 3–12 years
Clinic, Aut > DS (male:female)Aut > Clinic, DS (SES)
Aut > DS, psychiatric clinic (stress and probs)Aut > DS (all scales except financial probs)
QRS (Glidden, 1993):b
Cahill & Glidden (1996) DS: N = 34, M = 62 monthsControls:Unmatched: N = 74, M = 81Matched: N = 34, M = 65
DS > Unmatched control on many familycharacteristics
DS > Matched control in birth diagnosisand mothers’ age
Unmatched > DS (family disharmony); Nodifferences between DS and matched, butthe “means of almost all outcome variablesindicated slightly higher functioning” forDS
QRS–F:c
Fidler, Hodapp, &Dykens (2000)
DS N = 20, M = 5.78 yearsWS N = 20, M = 6.13SMS N = 20, M = 5.61
No group differences for child and parentcharacteristics
SMS > DS (parent and family problems);SMS, WS > DS (pessimism)
Sanders & Morgan (1997) Ages 7–11 yearsDS N = 18Aut N = 18Typical N = 18
No group differences except mothers inDS group were older (but maternal agenot correlated with dependentmeasures)
Aut > DS, typical (parent – family problems;child characteristics)
Aut, DS > typical (pessimism);Aut > DS (physical incapacitation)
Seltzer, Krauss, &Tsunematsu (1993)
CA = 35.5 yearsDS N = 160Non-DS N = 253Massachusetts: DS (73), Non-DS
(138); Wisconsin: DS (87), Non-DS(115)
DS: mother and child older, largerfamilies
Massachusetts: mothers older and morelikely to be still married, children olderand had less severe mental retardation
Non-DS > DS (conflict, unmet service needs,caregiving stress, burden);
DS > Mixed (satisfaction with informalsupport, functional abilities)
PSI:d
Wolf, Noh, Fisman, &Speechley (1989)
DS N = 31; M = 9.11 yearsAut N = 31; M = 9.34Developmentally normal:CA-matched N = 31MA-matched N = 31
Children matched on age and sexDS maternal age > Normal, Aut Normal
> DS, Aut (fathers’ education andfamily income)
Aut > DS and typical groups (parental stressand depression; in both cases, DS grouphigher — but not significantly — thantypical controls)
(Continued)
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TABLE 1 (Continued)
Author(s) Participants Demographicsa Main Findings
Hanson & Hanline (1990) 35 mother – child pairsDS N = 14; NI N = 12; HI N = 9M months: Year 1 = 20.3; Year 2 =
34.8; Year 3 = 51.0
DS > NI > HI (maternal age; 33.5, 30.7,27.0 years)
DS > NI (% with partner; 93% vs. 83%)
Year 1: NI > HI > DS (demandingness), HI >NI > DS (relationship with spouse);
Year 2: NI > DS > HI (acceptability);Year 3: NI > DS > HI (acceptability,
demandingness, total PSI score)Kasari & Sigman (1997) Aut N = 28, CA = 42 months
MR N = 26:DS (13); Nonspecific (13) CA = 40.7
monthsTypical N = 28, CA = 20.29 months
Aut and Typical matched on gender,ethnicity, and SES
No group differences except:Typical > other groups (SES)DS > Nonspecific MR, Aut (months of
intervention)
Autism, MR > DS, typical (child-relatedstress)
Roach, Orsmond, &Barratt (1999)
DS N = 41; Typical N = 58 < 5 yearsold
DS > Typical (child age, number ofsiblings, mothers’ and fathers’ age, %of employed mothers)
DS = typical (mood, adaptability, andreinforcement);
DS > typical (distractibility, demandingness,acceptability);
DS > typical (competence, health, rolerestriction, depression)
Psychological distress:e
Scott, Atkinson, Minton,& Bowman (1997)
Parents of infants < 2 yearsCohort 1 (1988)DS N = 46; Control N = 46Cohort 2 (1991)DS N = 62; Control N = 62(Control = DS refer an acquaintance
with an infant without disability)
No group differences in both cohortsafter matching case-by-case forcombined family income
DS = control (psychological distress) for eachcohort
Pooled sample: DS > control (5.6% parentsclinically depressed)
Effect size relative small and requires samplesize of at least 100 for both control andstudy groups to detect significant increasein psychological distress
Note. Aut = Autism; DS = Down Syndrome; SMS = Smith Magenis Syndrome; WS = Williams Syndrome; CA = Chronological Age; MA =Mental Age; NI = Neurologically Impaired; HI = Hearing Impaired; SES = Socioeconomic Status.
aNo group differences in demographic variables unless otherwise specified. bQRS = Questionnaire on Resources and Stress. cQRS–F =(Friedrich, Greenberg, & Crnic, 1983). dPSI = Parenting Stress Index (Abidin, 1983). eBeck Depression Inventory (Beck, Rush, Shaw, & Emery,1979); Profile of Mood States (McNair, Lorr & Doppelman, 1971); Impact of Events Scale (Horowitz, zWilner & Alvarez, 1979)
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Even accepting such limitations, Table 1 shows that parents of chil-dren with Down syndrome generally report less stress than do parents ofchildren with autism and other psychiatric disorders. Both the Holroydand MacArthur (1976) and Kasari and Sigman (1997) studies found lessstress among mothers in the Down syndrome versus autistic groups. InSanders and Morgan (1997), both mothers and fathers of children withDown syndrome versus with autism reported fewer parent and familyproblems, although parental pessimism levels did not differ. Similarly,parents of children with Down syndrome generally report less stressthan do parents of same-aged children with other psychiatric disorders(Holroyd & MacArthur, 1976; see also Thomas & Olsen, 1993, on familyfunctioning).
In addition, parents of children with Down syndrome may experienceless stress than parents of children with other types of mental retardation.This “Down syndrome advantage” occurs in Fidler, Hodapp, and Dykens’s(2000)studyofstressamongparentsof3- to10-year-oldchildrenwithDownsyndrome versus with either Williams syndrome or Smith–Magenis syn-drome. Similarly, Seltzer, Krauss, and Tsunematsu (1993) found less par-enting stress among mothers of 35-year-old adults with Down syndromeversus of adults with other forms of mental retardation. Although Hansonand Hanline (1990) did not always find the Down syndrome advantage, theDown syndrome group was favored over the “neurologically impaired”group on some measures. In contrast, Cahill and Glidden (1996) foundequivalent stress among parents of children with Down syndrome versuswithother typesofmental retardationoncethetwogroupswerematchedonseveral demographic variables. Compared to parents of other children withmental retardation, then, most but not all studies find less stress among par-ents of children with Down syndrome.
When comparing parental stress levels to parents of typically develop-ing children, the picture changes somewhat. Some studies find no differ-ences between parents of typically developing children and children withDown syndrome (Sanders & Morgan, 1997; Wolf, Noh, Fisman, & Speech-ley, 1989, on some measures). In contrast, both Scott, Atkinson, Minton,and Bowman (1997) and Roach, Orsmond, and Barratt (1999) reportedgreater levels of parental stress among parents of children with Down syn-drome versus of typically developing age-mates.
The most reasonable conclusion is that parents of children with Downsyndrome fall in the middle. Granted, few studies examine these issues,and one could argue that parents of children with Down syndrome havemore often been compared to parents of children with autism, conduct dis-order, or other genetic forms of mental retardation than to parents of chil-dren with mental retardation in general. Still, from the existing evidence,
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parents of children with Down syndrome seem to experience less stressthan parents of children with autism, other psychiatric conditions, or(non-Down syndrome) mental retardation, but slightly greater stress com-pared to parents of same-aged typically developing children.
Parental Rewardingness
In moving to the rewards parents feel, we again note that the relevantdata are scarce and that these few available studies vary in their control orcontrast groups. Similarly, one could again argue whether the absence ofreinforcement stress is the same as the presence of parental reward, even ifthe items do suggest this to be the case. Even given such caveats, however,compared to parents of children with other disabilities, parents of childrenwith Down syndrome do seem more rewarded by their children. Such in-creased rewards may even extend to comparisons to parents of typicallydeveloping children.
As Table 2 demonstrates, the existing studies suggest that children withDown syndrome may be more rewarding to parents than children withother disabilities. Noh, Dumas, Wolf, and Fisman (1989) reported that par-ents of children with Down syndrome considered their children as morerewarding (i.e., less Reinforcement stress) compared to children with ei-ther conduct disorder or with autism. Similarly, in a study using a measureconsisting of the PSI’s Reinforcement subscale plus several additionalitems, Hoppes and Harris (1990) also found that parents of children withDown syndrome considered their children more rewarding than did par-ents of children with autism.
Besides experiencing more rewards than do parents of children withother disabilities, parents of children with Down syndrome may evenconsider their children as equally rewarding as parents of typical chil-dren. Such low levels of reinforcement stress appear despite parental re-ports of more stress overall. In Roach et al. (1999), both mothers and fa-thers reported more stress on most PSI domains compared to mothersand fathers (respectively) of same-aged typically developing children.On the PSI Reinforcement stress scale, however, each did not differ fromparents of typically developing children. In Noh et al. (1989), parents ofchildren with Down syndrome (compared to parents of typical children)even considered their children as more rewarding. Though Noh et al.’sparents judged their children with Down syndrome as less attractive, in-telligent, and appropriate, they nevertheless saw “their children as hap-pier and as a greater source of positive reinforcement than the parents ofnormal children” (p. 460).
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TABLE 2Studies of Rewardingness in Down Syndrome
I—Articles Using PSI Rewardingness Scale (Lower = Less Rewardingness Stress)
Author(s) Participants Demographicsa Main Findings
Hanson & Hanline(1990)
35 mother – child pairsDS N = 14; NI N = 12; HI N = 9M months: Year 1 = 20.3; Year 2 =
34.8; Year 3 = 51.0
DS > NI > HI (maternal age; 33.5,30.7, 27.0 years)
DS > NI (% with partner; 93% vs.83%)
At all three ages, DS group < (notsignificant) HI, NI
(Year 1): 8.1, 9.6, 9.7, respectively(Year 2): 9.9, 11.0, 11.2(Year 3): 8.1, 9.2, 10.0
Roach, Orsmond, &Barratt (1999)
DS N = 41; Typical N = 58 36months
DS > Typical (child age, number ofsiblings, mothers’ and fathers’ age,% of employed mothers)
DS = Typical(7.90 vs. 7.98 for mothers)(8.66 vs. 8.81 for fathers)
Noh, Dumas, Wolf, &Fisman (1989)
DS N = 31; 9.11 yearsCD N = 35; 6.43 yearsAut N = 31; 9.34 yearsTypical N = 62; 7.62 years
Typical: highest income levelCD: 23/35 single mothers
Mothers and fathers of typicalchildren > mothers and fathers ofDS on levels of PSI RewardingnessStress
II—Article Using Maternal Gratification Scale (Higher = More Gratifying)
Hoppes & Harris(1990)
Aut N = 21; 7.01 yearsDS N = 17; 9.07 years
DS > Aut (child and maternal ages) Mothers of DS > autism (67.06 vs.61.81)
Note. Aut = Autism; DS = Down Syndrome; NI= Neurologically Impaired; HI = Hearing Impaired; CD = Conduct Disorder.aNo group differences in demographic variables unless otherwise specified.
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WHAT MAKES PARENTING CHILDRENWITH DOWN SYNDROME DIFFERENT?
In considering why parents of children with Down syndrome experienceless stress and more rewards, we first acknowledge aspects of Down syn-drome that differ from other disabilities. Down syndrome is the most com-mon genetic (chromosomal) cause of mental retardation, is known to par-ents and professionals alike, and has many active parent support andadvocacy groups. In addition, even with increased availability of amni-ocentisis and other prenatal screening, children with the syndrome aremore likely to be born to older mothers (Olsen, Cross, Gensburg, &Hughes, 1996). Such women may be more likely to already have had one ormore children, and thus to be more experienced parents. As older parentshave spent more years in the workforce, families may also be of slightlyhigher SES. Some researchers feel that such associated factors underlie the“Down syndrome advantage” (Cahill & Glidden, 1996).
At the same time, many children with Down syndrome also display cer-tain etiology-related behaviors that may predispose their parents to less-ened stress levels. Across several studies, groups of children with Downsyndrome have been found to display lower rates of maladaptive behavior(Dykens & Kasari, 1997; Meyers & Pueschel, 1991), and rates of autismseem especially low (Dykens & Volkmar, 1997). In contrast, the child’s levelof maladaptive behavior has constituted the single best predictor of paren-tal stress in other genetic mental retardation syndromes (Hodapp, Dykens,& Masino, 1997; Hodapp, Wijma, & Masino, 1997).
In addition, many children with Down syndrome are socially oriented.Compared to typical children of the same mental ages, toddlers withDown syndrome, on average, spend more time looking to an interactingadult than to surrounding toys (Kasari, Mundy, Yirmiya, & Sigman, 1990).During the school-age years, these children continue to be more likely thanothers with mental retardation to look to adults during problem-solvingtasks (Kasari & Freeman, 2001). Although the presence of a sociable“Down syndrome personality” is debated (Wishart & Johnston, 1990),these children appear more sociable and upbeat to their parents. In onestudy of the spontaneous descriptions made by 90 fathers of 7- to 14-year-old children, 21% described their children as sociable or friendly, 32% de-scribed their children as lovable, and 46% commented on their children’scheerful personalities (Hornby, 1995). In another study, Carr (1995) foundthat over half of mothers spontaneously described their child with Downsyndrome as “affectionate,” “lovable,” “nice,” and “gets on well with peo-ple.” Again, although not every child with Down syndrome is sociable,cheerful, or problem-free (and too few comparative studies exist), as a
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group such children probably show such characteristics more often thando others with mental retardation.
A related issue concerns the minimum level of sociability needed forparents to consider their children sociable. In several studies, children withDown syndrome have been found to be sociable mainly when one exam-ines lower level behaviors — such things as looking at others and smiling(Kasari et al., 1990). Conversely, on tasks involving higher level socialskills, these children perform no better (and sometimes worse) than chil-dren with other forms of mental retardation of the same chronological andmental ages (Sigman & Ruskin, 1999). Thus, compared to other retarded orto mental age-matched typical children, children with Down syndromeperform worse on hypothetical empathy tasks, even as they more oftenlook toward — and offer more comfort to — the distressed adults them-selves (Kasari, Freeman, & Bass, 2001). Similarly, children with Down syn-drome show no advantages over other retarded groups in their abilities tounderstand or label emotions (Kasari, Freeman, & Hughes, 2001). Yet, eventhough these children may lack certain high-level social skills, parents stillconsider them to be highly sociable.
UNRESOLVED ISSUES INVOLVING PARENTALSTRESS AND REWARDS
In considering issues of parental stress and rewardingness in Down syn-drome, three additional topics merit attention.
Theory and Measurement
As noted earlier, measures of both parental stress and rewards are ap-proximate at best. In addition, the connections of parental stress to parentaldepression, malaise, or other seemingly similar constructs remain unclear.Indeed, many studies use the term parental stress interchangeably with oneor more of these associated concepts.
An equally troublesome issue involves the differentiation of parentalstress and parental reinforcement. Can the two constructs of parental stressand rewardingness be differentiated, or do they overlap to such an extentthat making distinctions is pointless? Although this issue remains unre-solved, parent – family stress and rewardingness may be separable at leastin Down syndrome. In Abidin’s (1995) normative sample of 534 mothers ofbirth to 19-year-old community and clinic-referred children, the six do-mains of child-related stress loaded on a single factor of “child stress.” Butas shown in Tables 1 and 2, one finds several studies in which the PSI Rein-
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forcement domain and the other five child-related stress domains do notseem to be moving “in synch.” In Roach et al. (1999), Reinforces Parentjoins two other child-related domains (Mood and Adaptability) in show-ing equivalent levels compared to parents of typically developing agemates. In Noh et al. (1989), parents of children with Down syndrome re-ported lower levels of reinforcement stress, even as these parents reportedmore stress compared to parents of age-related typically developing chil-dren on the acceptability domain. Even in Hanson and Hanline (1990), thesole study not showing significant differences in PSI Reinforcement do-main relative to other disabled groups, scores on Reinforcement stress arelower at all three yearly intervals; stress due to the child’s acceptability anddistractibility is often higher than in the other two groups. At least for par-ents of children with Down syndrome, then, the construct of “reward-ingness” may be separable from other types of child-related stress.
Sample
As Tables 1 and 2 show, many studies do not equate parents, families,and children with Down syndrome versus their comparison groups on rel-evant demographic variables. As a result, we remain unclear whether anygroup differences in parent – family stress or rewardingness are due to re-actions to behavioral differences of the children themselves or, instead, toalready-existing demographic differences.
An interaction may also exist between etiology and parent senses oftheir child’s disorder. In a recent study examining maternal attributions tononcompliance vignettes for children with Down syndrome versus with(non-Down syndrome) mental retardation, Ly and Hodapp (2001) identi-fied two attribution factors — one essentially “normalizing” the behaviorand the other excusing it. Normalizations involved such statements as“My child is acting like any other child of the same age” and “My child isjust asserting his/her independence.” Excuses included “My child is prob-ably in a bad mood,” “Something or someone caused my child to act thisway,” and “My child has a disability that makes him/her act this way.” Inaddition to providing higher normalizing versus excuse-making ratings,mothers of children with Down syndrome gave higher normalizing attri-butions as children became increasingly more sociable and cheerful. Butsuch within-group correlations were not found in the non-Down syn-drome retarded group. Only in the Down syndrome group — a group forwhich mothers may already expect friendly, upbeat behaviors — didmothers more highly endorse normalizing attributions when childrenwere more sociable, outgoing, and “Down syndrome-like.”
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Age and Other Sources of Within-Group Variation
So far, we have addressed behavioral differences in Down syndromeas if they were static and nondevelopmental in nature. As recent studiesillustrate, however, such may not be the case. As they get older, childrenwith Down syndrome change in both their rates of development and,possibly, in their personality and maladaptive behaviors as well. Thus,compared to their earliest years, children with Down syndrome showslower and slower rates of development with age (see Hodapp, Evans, &Gray, 1999, for a review). Such changes may have the effect of makingparents feel that their children with Down syndrome are less rewardingand more stressful over time.
Another, possibly even more important change involves what onemight consider as either personality or maladaptive behavior. One recentstudy finds that, as a group, children with Down syndrome show greateramounts of withdrawal and “internalizing” problems as they become ado-lescents. Compared to earlier and later periods, Dykens, Shah, Sagun,Beck, and King (2001) cross-sectionally identified the period from 14 to 19years as the time of increasing amounts of internalizing behaviors. Al-though the effects of such increases in internalizing behaviors remain un-clear, it seems likely that parents will report greater amounts of stress —and lesser amounts of rewards from parenting their children — as their off-spring gradually become less outgoing and cheerful and more withdrawnand self-absorbed. Granted, not every child with Down syndrome showssuch changes during adolescence and early adulthood, but many do. Lon-gitudinal studies are now needed to clarify how children with Down syn-drome change behaviorally, how parents change in their behaviors andemotional reactions, and how the two sets of changes relate to each otherover time.
Along with such age-related changes, parental reactions may also be af-fected by whether the child is a boy versus a girl, whether the parent is amother versus a father, or whether the adult interactor is a mother or ateacher. In addition, secular changes have also occurred in Down syn-drome: What, for example, are the effects of parents knowing (versus notknowing) during pregnancy that they will give birth to a child with Downsyndrome? To date, all of these topics remain woefully under-researched.
CONCLUSIONS
In examining parental reactions to children with Down syndrome, wehighlight the connections among the child’s type of mental retardation and
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characteristic behaviors on the one hand, and the emotional and behav-ioral reactions of parents to these behaviors on the other. Our approachthus adopts findings from parenting literatures on typical children and onchildren with conduct disorders or who are at risk for poor developmentaloutcomes (resilient children). In parenting children with or without differ-ent disorders, our sense has been that the child’s behavior partially drivesor elicits parental reactions.
Although seemingly intuitive, such an approach has implications forfamily-based intervention programs for parents of children with Downsyndrome and with other disability conditions. In Down syndrome, par-ents can come to understand that, although often beneficial, children withDown syndrome’s sociability and cheerfulness can sometimes be used tocircumvent children’s persistent attempts to solve difficult problems (Ka-sari & Freeman, 2001). And, if many such adolescents become less outgo-ing, more withdrawn, and more self-absorbed, parents can be preparedemotionally and can work to counter-act these tendencies in their children.
In a similar way, parents of children with other disability conditions canalso be aided once we know which specific behaviors lead to which paren-tal reactions. Parents can be taught to evaluate whether specific child be-haviors are causing particular parental reactions. Armed with this infor-mation, parents can then work on reducing their stress, coping with thechild’s difficult behavioral characteristics, seeking outside support, rein-forcing their child’s positive behaviors, or adopting other strategies for im-proving the parenting experience. Such knowledge thus empowers par-ents to be more prepared and more in control of their parenting role.
Theoretically, these findings have important implications. As Stern(1997) noted, in several mammalian species mothers seem drawn to in-fants on the basis of vocalizations, touch (in humans, cuddling with theirinfant), and eye contact. In Hoppes and Harris’s (1990) study of mothers ofchildren with Down syndrome versus autism, mothers in the Down syn-drome group more often noted that they felt gratified when their offspringverbalized loving feelings, complimented them, expressed concern fortheir feelings, and demonstrated a strong interest in being physically close.Joined with high levels of looking toward the mother and making eye con-tact (Kasari et al., 1990), these factors may cause parents to feel more re-warded by their children with Down syndrome. Indeed, such basic socialbehaviors as making eye contact and smiling to others may be especiallyimportant, providing the initial foundation for close relationships betweenparents and their children.
Although admittedly an underexplored area, children with differentmental retardation syndromes may differ in the stresses and rewards felt bytheir parents. To date, only parents of children with Down syndrome have
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begun to be studied; compared to parents of other children with disabilities,parents of children with Down syndrome generally experience less stressand more rewards. Which specific child characteristics predispose their par-ents to less stress and more reward promises to be an important area of re-search in future years. If we can understand how and why children withDown syndrome affect their parents, we can better intervene with a varietyof “at-risk” parents, thereby making less stressful and more rewarding theparenting of all children, those with and without mental retardation.
AFFILIATIONS AND ADDRESSES
Robert M. Hodapp is at the University of California–Los Angeles GraduateSchool of Education and Information Studies, 405 Hilgard Avenue, Box951521, Los Angeles, CA 90095–1521. E-mail: [email protected] M. Ly is at the University of California–Los Angeles. Deborah J. Fidleris at Colorado State University. Leila A. Ricci is at the University of Califor-nia–Los Angeles.
ACKNOWLEDGMENTS
We thank Marc Bornstein, Elisabeth Dykens, and three anonymous re-viewers for their helpful comments on earlier versions of this article.
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