Journal of Early Intervention

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Family Factors in the Early Development of Children With Down Syndrome

Ann Van Hooste and Bea Maes
Journal of Early Intervention 2003; 25; 296
DOI: 10.1177/105381510302500405

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Family Factors in the Early Development of
Children With Down Syndrome

ANN VAN HOOSTE & BEA MAES

Katholieke Universiteit Leuven

From the very early stages of childhood, children with Down syndrome present considerable
individual variation in developmental abilities. Family factors play a significant role in this
variation because they might impede or facilitate individual developmental progress. This
article reviews important family factors associated with early development of infants and
children with Down syndrome. The quality of parent-child interactions, the family environment,
parental attitudes, family stress and coping, and formal and informal support are discussed in
connection with behavioral and developmental child outcomes. Parents and professionals
should know about these factors and understand how and when they affect development.

Because of the wide range of individual dif- To build a framework for this
conceptual
ferences in developmental abilities of children review, based Guralnicks general frame-
on

with Down syndrome, Hayes (1996) has as-
serted that research should focus on the sourc-
es of these differences. In this article, we will
review the family factors associated with var-
iability in the early development of infants
and young children with Down syndrome.
Guralnick (1998, 1999) described a general
framework with five factors that might influ-
ence early development of children with
Down syndrome: child characteristics, family
characteristics, family interactions, potential
stressors for the family related to the childs
disability,and early intervention. The focus in
earlier studies has often been on child factors
that impact development, more specifically on
medical issues. Recently, much more attention
has been paid to family variables and the im-
pact of social support and early intervention
practices on family factors. This knowledge is
important because it might give parents and
interventionists insight into how they can op-
timize a childs developmental potential. By
work (1998, 1999), we selected those family
factors that play a role in parenting children
with disabilities (see Figure 1). The possible
mutual influences of family factors are taken
into account. Parent-child interactions are cen-
tral to our model, because they often mediate
or moderate the influences of other factors on
developmental outcomes. We also discuss the
stressors that might have a negative impact on
the quality of family interactions and the po-
tential positive influence of resources for sup-
port.
For this review, we completed a computer-
assisted search in ERIC, PsycINFO, and So-
cial Sciences Abstracts Full Texts. We used
the following key words in a combined
search: Down syndrome, early development,
family, and early intervention. To be included
in this review, publications had to meet the
following criteria: (a) make an explicit and di-
rect link between family factors and early de-

reviewing the role of family factors in this ar-
ticle, we also keep with recent evolutions in
early intervention from child-focused to fam-
ily-centered practices (Dunst, Trivette, &
Deal, 1995).
velopment, (b) be either a survey or empirical
study, (c) date from 1982 to 2000, and (d)
explicitly refer to a research group of children
with Down syndrome between birth and age
5. Twenty eight studies met these criteria. This

296
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Figure 1.
Conceptual model of family factors relating to the early development of children with Down
syndrome.
Note. Portions of figure adapted from &dquo;Second Generation Research in the Field of Early Inter-
vention &dquo; (p. 7) in The Effectiveness of Early Intervention, by M. J. Guralnick (Ed. ), 1997, Bal-
timore : Brookes. Adapted with permission.

review was part of a larger research project on
the implementation of family-centered prac-
tices for children with Down syndrome and
their families.
pear to support optimal child development in-
clude responding in a contingent way; estab-
lishing reciprocity; providing affectionate,
warm, and nonintrusive interactions; structur-
ing andscaffolding the environment appro-

FAMILY VARIABLES priately ; encouraging discourse-based inter-

Parent-Child Interactions
Broad consensus exists among researchers
that parent-child interactions provide a critical
context for childrens development, especially
in the early years. For children with Down
syndrome, the relationship between the qual-
ity of parent-child interactions and develop-
mental outcomes has been widely established
(Berger, 1990; Crawley & Spiker, 1983; Cmic,
1990; Cunningham, 1993; Gibson & Harris,
1988; Shonkoff, Hauser-Cram, Krauss, & Up-
shur, 1992; Spiker & Hopmann, 1997). In gen-
eral, parent-child interaction patterns that ap-
action ; and ensuring developmentally-sensi-
tive patterns of caregiver-child interactions
(Guralnick, 1998).
Although interaction styles of mothers of
children with Down syndrome vary widely,
some literature suggests they tend to be sig-
nificantly more controlling and directive com-
pared to mothers of children without mental
retardation (Hodapp, 1995; Marfo, Dedrick, &
Barbour, 1998; Tannock, 1988). According to
Marfo et al. (1998), maternal directive behav-
ior might not be seen as inherently negative
and should be recognized as anadaptive qual-

297
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ityof parental behavior in dyads with children
who are developing atypically. Because chil-
dren with Down syndrome are generally less
responsive and active, they might require
more intensive and directive interactions. In
addition, directive mothers seem to be both
sensitive and responsive and not necessarily
intrusive, as was commonly inferred. Crawley
and Spiker (1983) described this multidimen-
sionality of parenting behavior. They evalu-
ated semi-structured, free-play, dyadic inter-
actions between mothers and their 18-month
to 2-year-old children with Down syndrome.
The authors reported that moderately directive
behavior and responsiveness to child behavior
are notnecessarily incompatible qualities.
Crawley and Spiker found that this parenting
style was related to better outcomes on the
mental development index scores on the Bay-
ley Scales of Infant Development (Bayley,
1969). They concluded that an optimal com-
bination of sensitive, elaborate, and directive
behavior might provide the most conducive
environment and stimulation value for the de-
velopment of children with Down syndrome.
In a study by Maurer and Sherrod (1987),
mothers of children with Down syndrome em-
ployed directives to promote appropriate use
of play objects and to obtain compliance.
Children were significantly more likely to
play with objects in a functionally-appropriate
manner following a maternal directive. Com-
paring 28 children with Down syndrome be-
tween 30 and 69 months old and 28 children
who were developing typically matched by
mental age, Landry, Garner, Pirie, and Swank
(1994) found that the former had greater com-
pliance with maternal requests that were di-
rective rather than suggestive, but only in a
structured situation. Mahoney (1988) found
individual differences in mothers use of di-
rectives were linked with differences in the
activity levels of children with Down syn-
drome. When children were inactive, their
mothers action requests appeared to engage
them in the interaction and encourage them to
perform challenging tasks.
A few studies have investigated the extent
to which interactions between mothers and
children with Down syndrome can be coached
298
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by means of systematic interventions. One ex-
ample is a study by Seifer, Clark, and Samer-
off (1991), in which an intervention group of
mothers participated in a training program
where they learned to respond in a more con-
tingent way and to have more reciprocal in-
teractions with their infants. Mothers in the
control group did not receive any specific
training. Results indicated the coached moth-
ers showed increased responsive behavior and
less intrusive conduct. Furthermore, their in-
fants were less fussy in interactions and
showed a statistically significant mean gain in
overall mental age.
Several child factors seem to have an in-
direct effect on parental responsiveness. Spik-
er (1982) indicated that a childs hypotonia
provides fewer and less clear interactive cues.
Hypotonia has negative effects on mutual re-
sponsive behavior of parent and child, and
consequently, on the synchrony of parent-
child interactions, which is assumed to pro-
mote the childs development. Variations in
temperament such as activity level, approach-
avoidance tendencies, and degree of distract-
ibility influence the frequency and quality of
childrens social interactions with their parents
(Shepperdson, 1995; Spiker, 1982). These var-
iables, in turn, affect the childs development
in a transactional manner.
Quality parent-child interactions are of the
utmost importance for the childs develop-
ment. Ideally, these interactions are sensitive,
responsive, and combined with a moderately-
directive parenting style. Such interactions
will affect the development of children with
Down syndrome in a positive way. In addi-
tion, the existing research suggests that child
characteristics affect parental responsiveness
during parent-child interactions.
Family Characteristics
Parental attitudes and expectations. Several
researchers have addressed the influence of
parental perceptions, attitudes, and expecta-
tions on parent-child interactions and devel-
opmental characteristics of children with
Down syndrome (Berger, 1990; Crnic, 1990;
Cunningham, 1987; Devenny, 1993a; Marfo
et al., 1998; Spiker, 1982). These factors can
be significant, especially in the childhood
years when the childs level of abilities is still
largely unknown. Cunningham (1987) con-
ducted a large longitudinal study of 181 fam-
ilies. When discussing the key results of his
Manchester Down Syndrome Cohort Study,
Cunningham indicated that exceedingly low
parental expectations were responsible to
some degree for underestimating children with
Down syndrome in the past. Expectations
were reduced because of the pessimistic views
professionals had, and sometimes still have,
about the developmental potential of these
children. Parental expectations about their
childs development and performance can be
inappropriate, for instance, because of over-
simplified associations of retardation with
concepts such as low intellectual capacity, in-
activity, and poor longer-term developmental
outcomes (Marfo et al., 1998) or because of a
lack of age-normed information about devel-
opmental achievements (Spiker, 1982). Marfo
et al. (1998) indicated that there
are also in-
stances when difficulties accepting the condi-
tion of disability lead to unusually high and
unrealistic expectations placed on children,
which can cause stress for children and fam-
ilies.
Distorted perceptions and expectations in
either direction can lead to parental interac-
tional behavior that might be inappropriate for
the childs development (Marfo et al., 1998).
Nevertheless, many parents of children with
Down syndrome are able to estimate accu-
rately their childs functional and competence
levels and gear their own behavior to it ap-
propriately (Berger, 1990).
Stimulating environment and experiences.
A generally stimulating family environment is
positively related to better developmental out-
comes in children with Down syndrome (Gur-
alnick, 1999; Sharav & Shlomo, 1986; Shep-
perdson, 1995). Major dimensions of a stim-
ulating environment include the variety and
developmental appropriateness of toys and
materials provided, the environments general
stimulation value, and the frequency and na-
ture of contacts with other adults and children
(Guralnick, 1998). Shepperdson (1995)
ducted a longitudinal study of two cohorts of
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children who raised at home. A multiple
were
regression analysis showed that stimulation
levels accounted for most of the variance in
the scores of children with Down syndrome
on the Reynell Language Scale (Reynell,
1969) and the Gunzburg Progress Assessment
Chart (Gunzburg, 1963, 1979, 1980), a social
competence scale. Crawley and Spiker (1983)
established a positive relationship between
maternal stimulating ability and mental age in
infants with Down syndrome. Shonkoff et al.
(1992) found noteworthy correlations between
maternal growth-promoting behavior and
child development. They suggested that prox-
imal caregiving experiences can serve as a
source of resilience for the child. In a study
of 54 children with Down syndrome and their
families from infancy through age 5, Hauser-
Cram et al. (1999) found that progress in com-
munication, daily living skills, and socializa-
tion domains were better predicted by mea-
sures of the family environment (i.e., family
cohesion and mother-child interaction) than
by maternal education. Cunningham (1996)
concluded that a child with Down syndrome
living in a cohesive and harmonious family is
likely to function at a higher level and less
likely to have behavioral problems.
Educational experiences for the child might
consist of contacts with adults and children as
part of parental social networks or through al-
ternative care arrangements (Guralnick, 1998,
1999). Parents might experience difficulties in
organizing playgroups with peers for their
children. Spiker and Hopmann (1997) empha-
sized the importance of initiating the child
into a set of experiences and expectations that
will optimize the childs inclusion and partic-
ipation in community activities and relation-
ships. This participation can promote their so-
cial competence with peers. Family members
and professionals who share the idea of inclu-
sion value activities that make it possible to
initiate steady relationships with peers without
disabilities and age-appropriate activities in
typical community environments (e.g., place-
ment in neighborhood child care and nursery
settings). A variety of evidence suggests that
con- a stimulating and harmonious family environ-
ment and contacts with other adults and chil-
299
dren favorably enhance the development of
children with Down syndrome.
Stressors
A child born with Down syndrome can cause
additional stress for the family. Researchers
examining distress associated with rearing in-
fants and children with Down syndrome have
described several stressors including emotion-
al strain, social isolation, and the burden of
care-taking (Atkinson et al., 1995; Cmic,
1990; Cunningham & Glenn, 1988; Devenny,
1993a, 1993b; Guralnick, 1998, 1999; Hayes,
1996; Hodapp, 1995; Hodapp, Dykens, Evans,
& Merighi, 1992; Scott, Atkinson, Minton, &
Bowman, 1997; Spiker, 1982; Tanaka &
Niwa, 1991).
Guralnick (1998, 1999) distinguished four
categories of stressors related to the childs
disability that might adversely affect family
patterns of interaction and child development.
The first category refers to the information
needs of parents concerning their childs cur-
rent and anticipated health and development.
According to Devenny (1993a), early infancy
is a particularly anxious and stressful time for
parents because during this time many related
medical conditions are identified and treated.
Throughout childhood, numerous questions
arise about the childs developmental and be-
havioral patterns and needs. Parents want to
understand what is possible for their child and
meet his or her needs (see also Hoekman &
van der Kleij, 1995). Guralnick (1998, 1999)
highlighted the importance and stressful na-
ture of these information needs, and their im-
pact on family interactions must not be un-
derestimated. Information needs can persist
throughout early childhood and often resur-
face at times of transition.
A second potential stressor is interpersonal
and family distress. Although reactions to the
birth of a child with Down syndrome vary
widely, parents typically experience a process
of grieving with feelings of uncertainty, guilt,
disappointment, and ambivalence (Hayes,
1996; Hodapp, 1995; Hodapp et al., 1992;
Spiker, 1982). The longer it takes parents to
adapt to the childs condition, the greater the
disturbance in interactional processes and par-
300
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enting behavior. Yet, many families of chil-
dren with Down syndrome adapt well to the
often unexpected stressful situation. Some
parents, for instance, reassess the expectations
and goals they have set for their child and
modify family roles and routines (Guralnick,
1998, 1999). Comparing families with a child
with Down syndrome by birth with families
who had knowingly adopted a child with
Down syndrome, Flaherty and Masters-Glid-
den (2000) found natural and adoptive fami-
lies to be well adjusted to the challenges of
rearing a child with Down syndrome. Com-
paring psychological stress levels of 108 par-
ents of children with Down syndrome and 108
parents of children without Down syndrome,
Scott et al. (1997) concluded that parenting
infants and young children with Down syn-
drome might cause less distress than previ-
ously thought. Although they found a statis-
tically significant increase in parental distress
for the families of a child with Down syn-
drome, effect sizes were small. Better family
services and increased acceptance of individ-
uals with Down syndrome were believed re-
lated to reduced psychological parental dis-
tress. In addition, the authors suggested that
parenting infants and young children with
Down syndrome might be less demanding
than parenting older children with Down syn-
drome.
Family distress might also impact marital
harmony. Hodapp (1995) highlighted the im-
portance of a good marital relationship; wom-
en in supportive marriages coped better with
parenting a child with Down syndrome than
those in troubled marriages. Crnic (1990)
found that in families of children with Down
syndrome, social support from friends and the
community was more relevant to maternal and
family coping than was support by a spouse.
He considered this finding to be clearly dif-
ferent from other studies of children with and
without disabilities that indicate the marital
relationship is a major source of support in
parenting and parent-child relationships.
Hayes (1996) concluded that limitations of
current research and lack of comparability
with the general population make it difficult
to draw a clear conclusion about the risk of
family breakdown. Parents are often con-
cerned about the impact the child with Down
syndrome might have on siblings. According
to several authors, however, no evidence ex-
ists to support the premise that a child with
Down syndrome adversely affects the lives of
other children in the family (Cuskelly, 1996;
Cuskelly & Gunn, 1993; Gath & McCarthy,
1996).
A third type of stressor is related to the pro-
vision of support needed by the child (Gur-
alnick, 1998, 1999). For many parents, their
former competence or experience regarding
infants and parenting will seem inadequate
when having to care for their infant with
Down syndrome (Cunningham & Glenn,
1988). For some families, the necessity to lo-
cate and sometimes coordinate special servic-
es for their child with a disability can be a
very heavy burden. These problems are cou-
pled with additional demands on time and fi-
nances (Devenny, 1993b; Hayes, 1996).
Taken together, stressors can seriously im-
pact the parents confidence in their perceived
ability to provide their child with the best pos-
sible education and care. Guralnick (1998,
1999) identified this process as a fourth type
of stressor, which he labelled confidence
threats. Confidence threats can have long-
term negative influences on the well-being of
the family and child. It is important that fam-
ilies have enough competence and confidence
to maintain a sense of control over decision
making. Child and family characteristics, so-
cial support, and personal coping resources of
family members all mediate or moderate the
impact of a child with Down syndrome on the
family system. Special needs do not necessar-
ily result directly in maladaptive or atypical
behavior.
Parents use diverse strategies to cope with
potential stressors. Their styles of coping de-
pend on specific child and parent character-
istics and on formal and informal resources
available for support. When summarizing key
findings of the longitudinal study of the Man-
chester Down Syndrome Cohort, Cunningham
(1996) found that families who used problem-
solving strategies to cope with child problems
scored higher on variables associated with
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well-being (see also Goldberg & Jill, 1998).
These strategies also were associated with bet-
ter functioning for the particular child. The
opposite was found when parents used a pas-
sive strategy of wishful thinking to cope with
child problems. In these families, the child is
also more likely to adopt a passive personal
coping style (i.e., learned helplessness).
In summary, potential stressors related to a
childs disability include information and re-
source needs, interpersonal and family dis-
tress, provision of support needed by the
child, and confidence threats. Several studies
have described the negative effects that these
stressors have on parental interactions and
child development. Nevertheless, by mobiliz-
ing adequate resources of support and using
active problem-solving strategies, many par-
ents seem to cope adequately with these
stressors.
Resources for Support
Social support. The effect of social support
from a spouse, partner, friends, kinship, and
other personal network members on families
and their children with Down syndrome has
been thoroughly investigated (Byme, Cun-
ningham, & Sloper, 1988; Crnic, 1990; De-
venny, 1993b; Dunst & Trivette, 1993; Dunst,
Trivette, & Jodry, 1997; Hoekman & van der
Kleij, 1995; Shonkoff et al., 1992). Dunst et
al. (1997) concluded in their review that social
support has direct, mediating, and moderating
influences on family functioning and on be-
havior and development of children. Social
support positively affects parental attitudes
and perceptions of their child, family func-
tioning, and the quality of parenting style. So-
cial network members serve as role models
and offer sources of information and advice
about parenting. The emotional support they
provide promotes parental well-being. These
effects can be moderated or mediated by other
family characteristics and life events. Support
was most effective when given in response to
an indicated need for particular kinds of in-
formation or resources. Moreover, informal
rather than formal support showed the stron-
gest relationship to several behavioral and de-
velopmental outcomes. Dunst et al. (1997) ex-
301
plained this
finding by hypothesizing that so-
cial support exchanges among personal net-
work members are characterized by
psychological closeness and mutual caring.
These interactive processes could have com-
petency-enhancing effects.
In a study involving preschool children
with Down syndrome and their families,
among others, Dunst, Trivette, and Cross
(1986) found that children were more likely
to make developmental progress if their par-
ents were part of supportive social networks.
Furthermore, they noted that social support
has a more powerful effect on intrapersonal
behaviors of parents (e.g., satisfaction with
parenting, self-concept) than on how the fam-
ily functions. Shonkoff et al. (1992) could not
confirm a direct influence of either network
size or support helpfulness on family func-
tioning or child development. Parent group
participation, however, was correlated with
changes in the subjective evaluation of being
helped. Heritage, Rogers, and West (1994)
found noteworthy relationships between the
primary caregivers feelings of satisfaction
and both informal and formal supports. The
informal support system, however, was not
found to be more beneficial than hypothe-
sized. Hodapp (1995) indicated that the pres-
ence of supportive social networks enhances
coping of mothers, whereas fathers feel more
comfortable when intervention or criticism
from the extended family is reduced to a min-
imum (see also Hornby, 1995; Knussen, Slop-
er, Cunningham, & Turner, 1992).
Shonkoff et al. (1992) followed 54 children
with Down syndrome for 1 year. Through
questionnaires, observations, and interviews,
they found social support seemed to be sen-
sitive to program effects. Parents who got help
that encouraged or required interactions with
other parents reported greater increases in
both network size and helpfulness than fami-
lies who got individual help.
Strong social networks appear favorable for
child and family functioning. The relative im-
pact of either formal or informal support is not
very clear. However, support in general is
most beneficial when it is based on needs of
the family.
302
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Early intervention. The immediate and
short-term effectiveness of early intervention
for children with Down syndrome and their
families is supported by consistent evidence
(Cunningham & Sloper, 1985; Gibson & Har-
ris, 1988; Gunn & Berry, 1989; Guralnick,
1991, 1998, 1999; Hines & Bennet, 1996; Nil-
holm, 1996; Piper, Gosselin, Gendron, & Ma-
zer, 1986; Sharav & Shlomo, 1986; Shepperd-
son, 1995; Shonkoff & Hauser-Cram, 1987;
Spiker & Hopmann, 1997; Torres & Buceta,
1998). Early intervention can benefit a childs
intellectual and adaptive functioning and has
impacts at a family level. Shonkoff and Hau-
ser-Cram (1987) demonstrated that early in-
tervention programs positively influenced ma-
ternal interactive behavior, social network
size, and ratings of network helpfulness. In a
meta-analytical review of 21 early interven-
tion studies of children with Down syndrome,
however, Gibson and Harris (1988) concluded
that longevity and consistency of effects are
more complex.
Analyses of components revealed that early
intervention consists of three major features:
resource support, social support, and the pro-
vision of information and services (Guralnick,
1998, 1999). Resource support is available in
the form of finding, organizing, and coordi-
nating the multi-faceted aspects of health, ed-
ucation, and social services. Parents might
benefit from sharing common experiences
with other parents of children with Down syn-
drome (Devenny, 1993b; Hoekman & van der
Kleij, 1995; Spiker & Hopmann, 1997). Par-
ent-to-parent support groups are a unique
source of information and can help strengthen
families by giving social and emotional sup-
port. They are also able to assist families in
mobilizing friends, extended family, and other
community-based natural supports to establish
an informal social network that can minimize
stressors (Guralnick, 1998).
Social support has important influences on
parent, family, and child functioning in gen-
eral (see Dunst et al., 1997). More specific
family counseling services can also help par-
ents and other family members to cope with
negative feelings and reactions, subsequently
contributing to a reduction in interpersonal
and family distress (Cunningham & Glenn,
1988; Devenny, 1993b).
Perhaps the most noticeable component of
early intervention is the provision of infor-
mation and services. Home- and center-based
programs are widely available for children
and parents participation (Guralnick, 1999).
Several techniques can be provided to parents
to strengthen parent-child interactions. A
framework can be built to help parents inter-
pret the childs behavior and development. In
addition, children might benefit from devel-
opmental or therapeutic interventions and
families from additional family support ser-
vices (e.g., respite care, case management).
These functions illustrate the heterogeneity of
early intervention services and highlight the
complexity inherent in questions about the ef-
fects of involvement in a formal early inter-
vention program (Shonkoff et al., 1992).
According to Spiker and Hopmann (1997),
few studies concerning children with Down
syndrome have investigated differential out-
come effects as a function of program dura-
tion or intensity. Sloper, Glenn, and Cunning-
ham (1986) attempted to examine this issue
by dividing a group of young children with
Down syndrome involved in early interven-
tion into matched intensive training and con-
trol groups. Parents in the first group were
given daily exercises to train object perma-
nence, imitation, and attention span. Parents
in the control group were given general advice
on how to guide their children with stimulat-
ing activities and games. The study revealed
small short-term effects in favor of the inten-
sive training group for the time of the inter-
vention, but no long-term developmental ben-
efits. According to Guralnick (1998), early in-
tervention programs that are comprehensive,
time intensive, or rather long (e.g., the first 5
years of life) can result in stable long-term
effects. Although he based this conclusion on
an analysis of the efficacy of early interven-
tion for vulnerable children in general, Gur-
alnick (1999) stated it is likely that most, if
not all, of these features are relevant to the
early intervention system for children with
Down syndrome. Shonkoff et al. (1992) found
that families receiving more total hours of
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help reported larger and more helpful social
support networks and significant decreases in
several aspects of parenting stress.
A strong rationale suggests that the earlier
intervention starts, the more effective it will
be. Research on children with Down syn-
drome and their families supports this &dquo;earlier
is better&dquo; principle. Guralnick (1991) argued
that if intervention is started early in life and
maintained, it can prevent the normal decline
of cognitive development, which occurs dur-
ing the first 12 to 18 months, from falling still
further behind. Furthermore, he stated that
children with Down syndrome who start in-
tervention at a later stage are still responsive
to the intervention, but probably will not
reach the same developmental level as chil-
dren who start earlier. Cunningham (1983,
1987) contradicted this statement in a discus-
sion of the findings of the Manchester Down
Syndrome Cohort Study. In a longitudinal
study of 181 families, infants who started the
intervention earlier generally showed more
progress, especially with regard to mental de-
velopment, than those starting later (6 to 12
months). The developmental status of the in-
fants who started later in life, however, im-
proved and reached the same level as their
peers who began earlier. Nevertheless, both
researchers agree that an early start of inter-
vention can be very beneficial for the entire
family. For instance, immediate intervention
can help increase parental confidence that they
can provide the child with an appropriately
responsive and stimulating environment. Very
early intervention might prevent mismatches
and patterns of interaction that do not support
the childs development. Some evidence also
indicates that supportive counseling can re-
duce or prevent stress at an early stage (Cun-
ningham, 1983; Devenny, 1993b).
Shonkoff and Hauser-Cram (1987) con-
ducted a meta-analysis of 31 studies on the
effects of early intervention services for chil-
dren with disabilities younger than 3 years.
One of the most solid findings of their anal-
ysis was that programs with well-defined cur-
ricula showed significantly greater child ef-
fects than those using less structured ap-
proaches. Individualization of interventions
303
and a limited number of service providers in-
teracting with a family might also be benefi-
cial, at least when children are very young.
Active parental involvement constitutes a
major program feature for the effectiveness of
early intervention (Cunningham & Glenn,
1988; Cunningham & Sloper, 1985; Gural-
nick, 1991, 1998; Shonkoff & Hauser-Cram,
1987; Shonkoff et al., 1992; Spiker, 1982;
Thomaidis, Kaderoglou, Stefou, Damianou, &
Bakoula, 2000; Torres & Buceta, 1998; White,
Bush, & Casto, 1985-1986). Shonkoff and
Hauser-Cram (1987) found that both extent
and type of parent participation had a signif-
icant effect on child outcomes. Programs with
extensive parent involvement yielded signifi-
cantly greater effects than those with little or
no parent participation. Programs that in-
volved parents and infants together appeared
to be significantly more successful than those
that worked with either the parent or child
separately. The nature of parental involvement
is an even more important issue. According to
Guralnick (1991), there has been a major re-
conceptualization of the role of families in
early intervention. In the past, parents were
often encouraged to assume therapeutic or di-
dactic roles (Cunningham & Glenn, 1988).
This model of family involvement did not ap-
pear to have substantial impact on child de-
velopment (McCollum & Hemmeter, 1997).
McCollum and Hemmeter have suggested that
specific parental teaching functions might pre-
vent the development of appropriate parent-
child relationships and that early intervention
is considered to be more effective and bene-
ficial for development if it is aimed primarily
at strengthening natural parent-child relation-
ships. Parents should be encouraged to use ed-
ucational and developmental information,
supplied by a social network or professionals,
in the natural context of parent-child relation-
ships. Furthermore, they should be supported
in their efforts to cope with daily problems
and to access formal and informal supports.
Early intervention should enable them to be-
come more competent and independent in de-
cision-making roles. Comprehensive parental
involvement helps parents to develop positive
and realistic expectations for their child and
304
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gradually increases their competence for at-
tending to the special needs of their child.
Researchers have demonstrated that the
likelihood services will have positive effects
on children and their family depends on the
way support is provided to them (Cunning-
ham, 1983; Cunningham & Sloper, 1985;
Dunst & Trivette, 1993; Dunst et al., 1997).
Evidence points to the need for programs to
be flexible and adaptive rather than rigid and
prescriptive. Early intervention is likely to
have the greatest positive impact when sup-
port, resource provision, and mobilization are
family-directed and conducted in response to
identified family needs, concerns, and desires.
Interventions are likely to be more success-
ful if specific life circumstances and family
strengths are taken into account (Dunst et al.,
1997). Parent-professional relationships
should be partnerships based on mutual re-
spect, with all parties working together to
meet the needs of the children and the entire
family (Cunningham & Glenn, 1988; Gural-
nick, 1991 ). This is part of the family-centered
approach of early intervention, in which
working with families is consumer-driven and
competency-enhancing (Dunst et al., 1995).
Mahoney and Bella (1998) conducted a study
to examine the effects of family-centered early
intervention on child and family outcomes.
Forty percent of the participating families had
a young child with Down syndrome. Findings
showed the children made statistically signif-
icant progress in developmental age scores
following the onset of family-centered inter-
vention. The rate of development attained dur-
ing intervention, however, was generally
equivalent to childrens rates of development
prior to the onset of this study. The authors
noted that this finding seemed consistent with
results from other early intervention efficacy
studies regarding children with mild to mod-
erate disabilities. According to Mahoney and
Bella, the question of whether these findings
represent significant intervention effects can
be answered by comparing the observed de-
velopmental rates to the rates of a comparable
contrast group of children.
In general, the literature supports positive
effects of early intervention. Research has
shown, however, that early intervention pro-
grams are most beneficial when several cri-
teria are met. Early intervention should be
comprehensive and time intensive, start early
in childhood, actively involve both parents
and infants, involve a limited number of pro-
fessionals per family, be adequately structured
yet flexible and adaptive, strengthen natural
parent-child relationships, and use family-cen-
tered strategies.
CONCLUSIONS
This article has presented an overview of im-
portant family and environmental factors that
affect early development of infants and chil-
dren with Down syndrome. Based on our re-
view of the literature, we conclude that a mod-
erately directive parenting style combined
with sensitive, responsive, and reciprocal in-
teractions, embedded in a general stimulating
environment at home and in the community,
are favorable to the childs development. Lack
of insight into the childs abilities and devel-
opmental needs, unresolved negative feelings,
and lack of support can disturb parental ex-
pectations, feelings of confidence, and com-
petence. Consequently, these disturbances can
negatively affect parent-child interaction and
child behavior and development. Social net-
works seem to have strong, positive influences
on coping strategies and on parental feelings
of satisfaction and competence. These feel-
ings, in turn, result in more positive parental
attitudes, family functioning, and parenting
styles, which promote progress in child de-
velopment and behavior. Formal early inter-
vention programs strengthen not only chil-
drens intellectual and adaptive functioning,
but also the familys functioning, interactions,
and social support networks. Several studies
have suggested, however, that the effects of
informal social support are superior to those
of formal early intervention programs.
Although we have used the literature to
identify important family and environmental
factors that affect the development of infants
and young children with Down syndrome,
conclusions about the relative importance of
these factors within our comprehensive frame-
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work are not possible. No study has been con-
ducted that simultaneously evaluates the fac-
tors identified in our conceptual framework.
The quality of the parent-child interaction is
considered by many researchers to be the most
central component for the development of a
particular child. The extent to which the other
factors shown in the framework have a direct
influence on the childs behavior and devel-
opment or have moderating and interactional
effects is not known. Future research should
generate integrated conceptual models an-
chored to theories of development and test
these models directly. Elucidating the factors
that moderate and mediate the successful de-
velopment of children with Down syndrome
is essential.
Research findings are ambiguous and in-
consistent for some factors identified in our
conceptual framework, which makes it diffi-
cult to draw firm conclusions. For studies in-
vestigating the impact of early intervention,
methodological shortcomings are often re-
ported. According to Marfo et al. (1998), lon-
gitudinal research with multiple causal de-
signs is needed. Meta-analyses are helpful for
integrating findings across studies, but they
are scarce in this focus area. Larger sample
sizes and comparison groups could help to
clarify whether the data reported are specific
to families with a child with Down syndrome.
Nilholm (1996) pointed out that, until re-
cently, little attention has been paid to macro-
factors. According to this author, the extent to
which scientific findings and the changes in
ideology and political concerns (e.g., inclusive
education) are connected with the childs de-
velopment deserve focused attention. What is
the interplay of ideology, science, and politics
on family factors and child development?
Parents and interventionists are concerned
with the development of children with Down
syndrome and seek to maximize developmen-
tal potential. Practitioners, researchers, and
families need to know the mechanisms by
which family factors affect early child devel-
opment and how early intervention programs
can prevent or mitigate negative effects and
strengthen the positive impact of family fac-
tors. Thorough knowledge of these mecha-
305
nisms provides guidance for developing opti-
mal and innovative intervention strategies for
families. This review clearly shows that there
are many family factors that affect child de-
velopment.
To promote childrens development and
well-being, those involved in early interven-
tion should not only focus on the child, but
also address family factors and direct services
to the whole family. Services with a family-
centered focus should be needs-based, which
means that they answer identified child and
family needs, concerns, and desires (Dunst et
al., 1995). Depending on identified needs, in-
terventionists can provide parents with infor-
mation about their childs proficiencies and
limitations, offer them emotional support for
coping with the situation, and support them in
finding, organizing, and coordinating special
services and resources. They might also offer
the parents a framework for positive and re-
alistic expectations regarding their childs be-
havior and development. By targeting identi-
fied needs, potential stressors can be reduced.
Family-centered services also are compe-
tency-based and competency-enhancing,
which means they build on existing family
strengths and promote the acquisition of com-
petencies that lead to empowerment (Dunst et
al., 1995). Interventionists can promote active
problem-solving and coping styles and
strengthen parent-child interactions by show-
ing parents how they might react sensitively
and responsively to the childs initiatives, en-
gage their child in appropriate play and activ-
ities, and provide stimulating educational ex-
periences. Furthermore, family-centered ser-
vices are directed at extending and mobilizing
the social support network (Dunst et al.,
1995). Other parents, friends, and family
members can be sources of emotional support,
information, and advice about parenting. They
can be role models or platforms for sharing
common experiences. Extending informal so-
cial support is important for two reasons: (a)
it makes people less dependent on formal
structures (Dunst, 2000), and (b) it might have
more impact than formal support on child,
parent, and family outcomes (Dunst et al.,
1997).
306
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To realize family-centered principles, a true
partnership between professionals and parents
is required. This partnership is characterized
by shared responsibility, reciprocity between
partners, equality in the relationship, and
working together toward an objective that has
been jointly agreed upon and for which the
final decisions are made by the family (Bailey
et al., 1998; Dale, 1996; Dunst et al., 1995).
Improved quality-of-life for families is con-
sidered to be the ultimate goal of family-cen-
tered interventions (Bailey et al., 1998; Turn-
bull et al., 2000). Because promoting child
well-being and development is part of family
quality-of-life, it should receive sufficient at-
tention in family-centered interventions.
Moreover, this review has shown that other
aspects of family quality-of-life such as fam-
ily interactions, parenting, and social and
emotional well-being will have an impact on
child development.
The reviewed research suggested that child-
directed developmental and therapeutic inter-
ventions are best when they are comprehen-
sive and time intensive, started early, individ-
ualized, involve a limited number of con-
cerned professionals, and are adequately
structured yet flexible and adaptive. Guralnick
(1998) suggested that to benefit the child and
family maximally, specific early intervention
components (e.g., intensity, parental involve-
ment) should be matched with child (e.g., type
and severity of disability) and family charac-
teristics and interaction patterns. Understand-
ing more completely how family factors in-
teract to influence child outcomes will help to
identify the most effective configurations of
early intervention program features.
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Correspondence concerning this article should be
addressed Ann Van Hooste, Centre for Disabil-
to
ity, Special Needs Education and Child Care, Kath-
olieke Universiteit Leuven, Vesaliusstraat 2, B-3000
Leuven, Belgium. E-mail: ann.vanhooste@ped.
kuleuven. ac. be
309