Família e Deficiência Intelectual

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Families of Adolescents and

Adults With Intellectual and
Developmental Disabilities
J. Lounds Taylor*, 1, M.M. Burkex, a, L.E. Smith{, a and S.L. Hartley{, a
*Vanderbilt University, Nashville, TN, United States
x
University of Illinois at Urbana-Champaign, Champaign, IL, United States
{
University of WisconsineMadison, Madison, WI, United States
1
Corresponding author: E-mail: julie.l.taylor@vanderbilt.edu
Contents
1. Parent Well-being and the ParenteChild Relationship in Families of Adolescents 3
and Adults With IDD
1.1 Past Research 3
1.2 Present State of Research 5
2. Marital Quality in Families of Adolescents and Adults With IDD 9
2.1 Past Research 9
3. Relationships and Well-being Among Siblings of Adolescents and Adults With IDD 15
3.1 Past Research 16
4. Summary of Past and Present Research 21
5. Directions for Future Research With Families of Adolescents and Adults With IDD 21
5.1 Moving Beyond Group Differences 22
5.2 Including More Representative Samples 22
5.3 Understanding the Experience of All Members of the Family 24
5.4 Longitudinal Studies That Consider Key Turning Points and Directions of 26
Effects
5.5 Considering Positive Outcomes 28
5.6 Developing and Implementing Effective Supports for Families 28
References 29
a
All contributed equally to this chapter. The order of authors was determined at random.
International Review of Research in Developmental Disabilities, Volume 50
© 2016 Elsevier Inc.
j
ISSN 2211-6095
http://dx.doi.org/10.1016/bs.irrdd.2016.04.001 All rights reserved. 1
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2 J. Lounds Taylor et al.
Abstract
This chapter focuses on past and present themes in research on families of adolescents
and adults with intellectual and developmental disabilities (IDD), as well as suggested
future directions. We focused on three types of family relationships: relationships be-
tween the parent and the adolescent/adult with IDD (including parental well-being),
parents’ marital relationships, and sibling relationships (including sibling well-being).
A common past theme for each of these types of relationships was a focus on be-
tween-group differences, which encompassed comparisons between disability and
typically developing samples, as well as comparisons between disability groups. Present
research themes included investigation of risk and protective factors, a widening of the
outcomes that are investigated, and recognition of the interactive influences of multi-
ple relationships. A number of suggestions for future research are described, including
the need for more diverse samples, importance of longitudinal research, incorporating
the perspectives of all members of the family, and developing effective family supports
and interventions.
The family has long been acknowledged as a critical context for develop-
ment for children without disabilities. Various family factors such as specific
parenting behaviors (Borkowski, Ramey, & Bristol-Powers, 2002), the
quality of the physical and emotional home environment (Totsika & Sylva,
2004), and parental psychological well-being (Natsuaki et al., 2014) exert
influence across childhood and into adulthood. Over the past several decades
there has been increasing focus in the field of developmental disabilities on
the family, with studies showing the impact of having a loved one with a
disability on family functioning (eg, Tint & Weiss, 2016) as well as studies
indicating how family factors predict life course outcomes (for reviews see
Hatton & Emerson, 2003; Warren & Brady, 2007).
Although individuals with intellectual and developmental disabilities
(IDD) spend the majority of their lives in adulthood, until recently much
of the family research has focused on families of children. Yet parentechild
and sibling relationships begin to deviate even further from the norm as in-
dividuals with IDD age through adolescence and adulthood. According to
Family Life Cycle theory (Carter & McGoldrick, 1989), parents of typically
developing youth launch their children out of the family home during this
stage, resulting in reorganization of parent and sibling relationships to
become adult-to-adult, and leaving parents with more time to focus on their
own relationships and goals. Yet, for many parents of individuals with IDD,
intensive caregiving continues until parents are no longer able to provide
caredoften over five to six decadesdat which point siblings may take
over the primary caregiving role (Lounds & Seltzer, 2007). This deviation
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Families of Adults 3
from the typical family life cycle affects all members of the family, resulting
in altered relationships and implications for quality of life and well-being.
In this 50th Anniversary chapter we take stock of the state of knowledge
on families of adolescents and adults with IDD, focusing on past and present
research themes. We focus on three family bonds: the parentechild relation-
ship (including parental well-being); parents’ marital relationship; and the
sibling relationship (including sibling well-being). At the end of the chapter,
we discuss a number of future research directions.
1. PARENT WELL-BEING AND THE PARENTeCHILD

RELATIONSHIP IN FAMILIES OF ADOLESCENTS AND
ADULTS WITH IDD
1.1 Past Research
As noted by Hodapp (2002), from a historical perspective, early studies
of parenting in families of individuals with IDD were often limited in scope,
with minimal consideration of genetic factors. These studies also often
lagged behind research on families of typically-developing children in
regards to the complexity of the theoretical models being tested. Subse-
quently, although some early studies focused on the quality of parentechild
interactions (eg, Floyd, Costigan, & Phillippe, 1997; Tannock, 1988), much
of the past literature on families of individuals with IDD centered on doc-
umenting the negative consequences for parental and family well-being,
particularly later in the life course.
As a result of this long-standing research emphasis, the heightened level
of stress experienced by parents of individuals with IDD is very well
established (eg, Hayes & Watson, 2013; Lee, 2013). High levels of stress
and caregiving burden have been observed across the lifespan, with parents
reporting elevated levels of stress compared to controls during the early
childhood years as well as in adolescence and adulthood (Baker et al.,
2003; Eisenhower, Baker, & Blacher, 2005; Emerson, 2003). High levels
of parental stress subsequently can take a toll on parent’s physical and psy-
chological well-being; relative to parents of typically developing individuals,
parents of individuals with disabilities have been found to have higher levels
of anxiety and depression and more physical health problems (Smith, Seltzer,
& Greenberg, 2012).
In addition to the historical emphasis on the burden of caregiving, much
past research on parentechild relations during adolescence and adulthood
focused on family life course transitions, specifically considerations for
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out-of-home placement, including long-term decision making and plan-

ning (eg, Turnbull, Turnbull, Bronicki, Summers, & Roeder-Gordon,
1989). For example, Seltzer, Krauss, Hong, and Orsmond (2001) found
that aging mothers were highly involved in the planning and relocation pro-
cess and continued to have high levels of contact and emotional involve-
ment with their adult child following an out-of-home placement.
Mothers’ satisfaction with their contact with their adult child increased
over time and their sense of burden decreased after placement (Seltzer
et al., 2001). In another older study, higher levels of informal support
were associated with lower levels of caregiving burden among parents of
adult children with IDD who continue to coreside, whereas desire for
out-of-home placement was linked with having fewer support resources
(Heller & Factor, 1993).
Since these earlier studies, new research has continued to document the
toll of lifelong caregiving on older parents of adult children with IDD, with
studies showing that caregiving burden is often exacerbated by poor future
planning and lack of adult services (Ryan, Taggart, Truesdale-Kennedy, &
Slevin, 2014). One example of recent work with robust methods and public
health implications can be found in Seltzer, Floyd, Song, Greenberg, and
Hong (2011). In a large, population-based, and longitudinal study, these au-
thors found that, compared to matched controls, parents of individuals with
IDD have poorer physical and mental health than their peers, especially as
they entered old age. More recent work on residential transitions also has
expanded to include the impact of social networks and family dynamics in
predicting residential outcomes (eg, Woodman, Mailick, Anderson, &
Esbensen, 2014). It will be critical for future work to continue to probe
with rigorous methodologies these questions regarding for whom and
when families experience burden, as the answers to these questions have
important implications for timing and delivery of formal and information
supports and services.
As a final comment regarding the history of parentechild research in
IDD, it is worth noting that the field’s emphasis on investigating child-to-
parent effects (eg, focus on caregiving stress) rather than parent-to-child
effects may be, at least in part, a reaction against very early blaming of fam-
ilies for children’s developmental difficulties. Specifically, in the 1950s and
1960s, mothers of children with autism spectrum disorders (ASD) were
blamed for causing their child’s condition, as poor parenting was the prevail-
ing theory regarding etiology of ASD at the time (for a review, see Folstein
& Rosen-Sheidley, 2001). This idea has since been discredited, and it is now
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widely accepted that ASD is a complex genetic disorder and not caused by
parenting style. Both of these perspectives, however, have shifted attention
away from the role of families and parenting in influencing developmental
trajectories for individuals with ASD and other genetic conditions. Howev-
er, contemporary research has an increased focus on understanding contex-
tual as well as endogenous factors associated with development and
outcomes for individuals with IDD, which we review in the next section.
1.2 Present State of Research

We are currently in an exciting time in family research in IDD, as the field is
evolving to consider new theoretical perspectives for understanding parente
child relations across development. Investigators are moving away from
purely descriptive studies focusing on elevated levels of stress and burden
to examine more sophisticated models of family dynamics including (1)
diathesis-stress models, which answer questions of why some but not all par-
ents experience difficulties, (2) transactional models, which explore bidirec-
tional influences between parents and children and how they change over
time, and (3) ecological models, which emphasize how contexts (including
cultural issues) are critical for understanding developmental processes
(Carroll, 2013). There has also been an expansion in the field regarding
outcomes of interest, with an increased focus on the biological impact of
caregiving (taking a biopsychosocial perspective) and the positive impacts
of caregiving including adaptation and personal growth (taking a positive
psychology perspective). We review in the following discussion a selection
of studies which highlight some of these recent trends.
Moving beyond group differences to consider risk and protective factors. One key
advance of family IDD research has been in moving beyond identifying the
implications of having a child with a disability on the family, to instead also
consider why these families are affected. What, exactly, is it about having a
child with a disability that influences the family, and might there be moder-
ators of a family’s experiences? Increasing numbers of studies now examine
mechanisms influencing family stress and adaptation. Repeatedly across
studies of children, adolescents, and adults with IDD, for example, the chal-
lenging behaviors of individuals with IDD are among the most significant
predictors of parental burden and distress (Hastings et al., 2005; Herring
et al., 2006; Lounds, Seltzer, Greenberg, & Shattuck, 2007; Seltzer et al.,
2010). Studies also have found child behavior problems to act as a significant
predictor of parenting quality and the parentechild relationship. For
example, in a study of individuals with ASD during adolescence and
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adulthood, predictors of motherechild relationship quality included the

child having less severe behavior problems, better health and less social
impairment (Orsmond, Seltzer, Greenberg, & Krauss, 2006). These studies
highlight that it is not the presence of offspring with a developmental differ-
ence, per say, which infers risk to parental well-being and behavior, but
rather specific aspects of a child’s phenotype that challenge families.
Also being explored are several potential protective factors. For example,
coping strategies such as planful problem solving and cognitive reframing
have been found to buffer stress for aging parents of children with disabilities
and these benefits of coping are especially strong when offspring are coresid-
ing with their parents (Piazza, Floyd, Mailick, & Greenberg, 2014). Coping
may be particularly impactful when child behavioral challenges are greater,
and parents may gain skill in applying coping strategies as their children
move into adolescence and adulthood (Smith, Seltzer, Tager-Flusberg,
Greenberg, & Carter, 2008).
Other studies have demonstrated that social support can be beneficial for
parental well-being as parents age (Smith, Greenberg, & Seltzer, 2012). A
study by Woodman (2014) found that in addition to child behavior prob-
lems, maternal social support and a positive family climate predicted stress
trajectories from childhood through adolescence for mothers and fathers
of children with IDD. Interestingly, mothers and fathers within the same
family had similar trajectories of stress over time, although there were
some differences between mothers and fathers in the factors that predicted
stress. For example, although child behavior problems predicted stress during
early childhood for both mothers and fathers, the child’s adaptive behavior
predicted initial levels of stress for fathers only. Furthermore, father’s report
of family climate predicted mother’s report of stress, but not vice versa
(Woodman, 2014). These types of nuanced analyses are very valuable
when moving beyond descriptions of group differences to instead create
models of targeted services and supports for families.
Considering parent-to-child effects and bi-directionality in family relations. As
noted earlier, in the general child and adolescent development literature,
parenting and the family environment have long been recognized as critical
predictors of life course outcomes. This perspective has been extended to in-
dividuals with IDD, with several studies now documenting the impact of the
parentechild relationship on children’s outcomes across a range of disabil-
ities. Notably, significant and long-term effects of the family context have
been demonstrated in samples of individuals with known genetic conditions
at multiple points in the lifespan, highlighting how environmental factors
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shape the developmental course regardless of etiology. For example, in a

longitudinal study of motherechild dyads of children with fragile X syn-
drome (FXS), maternal responsivity during early childhood predicted lan-
guage development at age 9 years, even after controlling for level of
autism symptoms, nonverbal intelligence quotient (IQ), and maternal edu-
cation (Brady, Warren, Fleming, Keller, & Sterling, 2014). As an example of
family environmental impacts later in the life course, in a 22-year longitu-
dinal study of 75 adults with Down syndrome, Esbensen, Mailick, and Sil-
verman (2013) found that earlier levels of maternal depressive symptoms
predicted later life outcomes among their offspring with IDD including
functional abilities, behavior problems, and even dementia status.
In addition to studies that document parent-to-child effects, several
studies now examine bidirectional effects between parents and children
(eg, Neece, Green, & Baker, 2012). For example, in a study testing a trans-
actional model of stress and behavior problems for families of children with
developmental disabilities, Woodman, Mawdsley, and Hauser-Cram (2015)
found support for both child-driven and parent-driven effects over a 15-year
period from age 3 to age 18. Findings also suggested important differences in
the strength of effects depending on the child’s developmental stage. For
instance, there were bidirectional effects between internalizing behavior
problems and parent stress during early childhood; during middle childhood
the direction of effects was mainly from child to parent, whereas in adoles-
cence it was from parent to child (Woodman, Mawdsley et al., 2015). Relat-
edly, for adolescents and adults with ASD, studies have shown that
experiencing a family environment characterized by high levels of praise
and warmth is associated with reductions in autism symptoms, behavior
problems, and psychological symptoms over time, with effects going mainly
from parent to child (Smith, Greenberg, Seltzer, & Hong, 2008; Woodman,
Smith, Greenberg, & Mailick, 2015). Studies such as these which test richer
conceptualizations of family dynamics are needed to guide timely and effec-
tive models of intervention.
Considering a wider range of outcomes. As another contemporary trend,
current research is expanding in its scope of family impacts as well as the
specificity of measurement. For example, the field is now beginning to
follow past recommendations to examine both positive and negative
outcomes for families of individuals with disabilities (Blacher, Neece, &
Paczkowski, 2005; Hastings, Allen, McDermott, & Still, 2002). A review
by Tint and Weiss (2016) found that, although the majority of studies of
family well-being have focused on negative outcomes, positive outcomes
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are observed and predictors of outcomes are now a focus of current research.
Similarly, in a comprehensive review of family support for adults with
disabilities, Heller, Caldwell, and Factor (2007) suggested that many aging
families show signs of adaptation. We hope that this more comprehensive
focus on diverse family impacts from a positive psychology perspective
will continue in the future.
As another example of expanded measurement, current research has
been moving toward a better understanding of the biological implications
of caregiving stress. Multiple studies have now explored diurnal cortisol, a
biomarker of stress, among parents of children with IDD; in general, such
studies have found patterns of dysregulation relative to parents of children
without disabilities. In a population-based sample of midlife parents of chil-
dren with disabilities and matched controls, cortisol expression differed
significantly between groups, with more pronounced differences for parents
who spent more time with their children (Seltzer et al., 2009). Similarly,
Seltzer and colleagues examined differences in cortisol expression between
mothers of adolescents and adults with ASD and mothers of aged-matched
offspring without disabilities. They found that mothers of individuals with
ASD had significantly hypoactivated cortisol levels, particularly those
mothers whose children had the most significant behavioral challenges
(Seltzer et al., 2010). Other cortisol studies have suggested that, compared
to other parents, parents of adolescent and adult offspring with ASD may
have more stress reactivity (Wong, Mailick, Greenberg, Hong, & Coe,
2014). Furthermore, research among mothers of adolescents and adults
with FXS (who typically are carriers of the premutation of FXS) has indi-
cated that there are gene-by-environment interactions in the prediction of
cortisol, such that mother’s own level of genetic risk moderates the impact
of stress on health and well-being (Hartley, Seltzer, Hong, et al., 2012;
Seltzer, Barker, Greenberg, Hong, Coe, & Almeida, 2012). Further explo-
ration of the role of genetics in parent outcomes will be an important area for
future research.
Another biomarker receiving research attention is telomere length.
Shortened telomeres are thought to be associated with accelerated cellular
aging due to stress exposure and have been found in a range of health con-
ditions (Verhoeven et al., 2014; Willeit et al., 2010). Related to IDD, Epel
et al. (2004) found a relationship between caring for children with special
health care needs or disabilities and telomere shortening, with women
who had been providing care for the longest duration having the shortest
telomere lengths. An interesting study of families of young children with
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ASD found that mothers, children with ASD, and their infant siblings all had
shortened telomeres compared to typically developing controls (Nelson,
Varcin, Coman, DeVivo, & Tager-Flusberg, 2015). In addition to suggest-
ing that all family members may be at-risk, these findings raise question as to
which genetic/biological mechanisms may be at play in regulating telomeres
and response to stress (Drury, 2015). More work is needed to continue to
understand the gene-by-environment effects in families of children with
IDD and how these associations may vary by child age and life stage. Taken
together, these findings regarding the biological impact of stress clearly high-
light the significant risks to health associated with raising a son or daughter
with IDD, which appear to compound over time. These findings also un-
derscore the need for appropriate intervention services to help reduce stress
for the entire family system across the life span.
In the next section we continue to focus on parents, by summarizing the
past and present research on marital quality among parents of adolescents and
adults with IDD.
2. MARITAL QUALITY IN FAMILIES OF ADOLESCENTS

AND ADULTS WITH IDD
2.1 Past Research
Although a growing body of research examines marital quality in par-
ents of individuals with IDD, most studies have focused on the early
parenting years. While these findings can help us understand marital quality
in parents of adults with IDD to some degree, the later parenting years are
deserving of their own studies. Given the lifelong nature of IDD, parenting
challenges and the need for caregiving often extends into the adulthood of
the son or daughter with IDD (Seltzer et al., 2009; Smith et al., 2010). How-
ever, the nature of parenting challenges, as well as parents’ ability to cope
and manage these challenges, changes across the life course of an individual
(Benson, 2014; Grein & Glidden, 2015). Moreover, couple relationships
also have their own developmental life course; marital satisfaction, risk of
divorce, couple coping, and couple conflict all shift across the life of a rela-
tionship (eg, Dush, Taylor, & Kroeger, 2008). Thus, relative levels of marital
quality, as well as the factors and mechanisms that shape marital quality, are
likely to differ in parents of adults with IDD than in parents of children with
IDD. There is also the need to consider selection effects, as couples who
remain married to the same partner into the adulthood of their son or
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daughter with IDD differ from those whose partnership ended earlier on (eg,
Freedman, Kalb, Zablotsky, & Stuart, 2012; Hartley et al., 2010).
When considering the past of marital relationship research for parents of
adolescents and adults with ASD, the most common trend has been to
examine whether these marital relationships are at-risk. Across studies, there
is evidence that on average, parents of individuals with IDD as a group have
a slightly increased risk of divorce (eg, Hartley et al., 2010; Risdal & Singer,
2004; Witt, Riley, & Coiro, 2003) and lower average level of marital satis-
faction (eg, Brobst, Clopton, & Hendrick, 2009; Florian & Findler, 2001;
Gau et al., 2012) than comparison groups of parents of individuals without
disabilities. However, findings are mixed, with other studies reporting no
difference in the risk of divorce (eg, Freedman et al., 2012; Urbano &
Hodapp, 2007) or in average level of self-reported marital satisfaction (eg,
Floyd & Zmich, 1991; Rodrigue, Morgan, & Gerffken, 1992) between par-
ents of individuals with IDD and comparison groups. Moreover, within
studies, researchers report substantial variability in marital quality among par-
ents of individuals with IDD, with outcomes widely ranging from highly
dissatisfying relationships to highly satisfying and long-lasting relationships
(for a review see Hartley, Seltzer, Barker, & Greenberg, 2011).
In part, the discrepancy between and within studies in marital quality
reflects differences in family characteristics as well as in the nature of various
IDDs. There are vast differences in functioning, symptoms, and co-
occurring behavior problems among individuals with IDD, such that
some types of IDD appear to be more taxing on parents’ marital quality
than others. Indeed, differences in risk of divorce and level of marital satis-
faction vary by type of IDD (Hartley et al., 2010; Risdal & Singer, 2004;
Urbano & Hodapp, 2007). For example, using population data on adults
in their midlife in the United States, parents who had an adult child with
IDD (due to mixed etiologies) were not more likely to have divorced
than parents whose adult children did not have disabilities (Seltzer et al.,
2011). In contrast, in a sample of 391 mothers of adolescents and adults
with ASD, Hartley et al. (2010) found an increased risk of divorce for this
ASD group compared to a matched sample of mothers of adolescents and
adults without disabilities. Compared to the stress of parenting offspring
with other types of IDD, having a son or daughter with ASD has been found
to be especially stressful for parents (eg, Abbeduto et al., 2004; Hartley,
Seltzer, Head, & Abbeduto, 2012); parenting offspring with ASD (versus
with other types of IDD) may also take a greater toll on marital quality.
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Current research has begun to shift from examinations of group differences
by disability type, and instead to focus on when couples might be most at-
risk, as well as understanding why some couples fare better than others.
There is also emerging research that takes a family systems perspective,
examining how multiple relationships in the family act on and are influ-
enced by each other. Each of these ideas, with representative studies, is
further explained in the following discussion.
Pinpointing when in the life course couples are most at-risk. There is evidence
that risk of divorce varies across the life course of the individual with IDD,
and periods of greatest vulnerability differ for different types of IDD. In the
Hartley et al. (2010) study, parents of individuals with ASD did not
evidence an increased risk of divorce relative to parents whose children
did not have a disability when the child was young (ie, prior to age 9 years).
However, beginning in older childhood and continuing into the off-
spring’s adolescence and adulthood, mothers in the ASD group had a
higher risk of divorce than mothers in the comparison group. It may be
that marital strain from negative couple interactions accumulates over
time to eventually take its toll, leading to marital disruption. Alternatively,
transitions and changes during adulthood (eg, exit out of high school) have
been found to be particularly challenging for individuals with ASD and
their parents (Taylor & Seltzer, 2010, 2011a, 2011b), and individuals
with ASD have relatively poorer outcomes in adulthood than individuals
with other types of IDD (eg, Levy & Perry, 2011). Thus, challenges that
occur during adulthood may add new stressors to the marital relationship.
In contrast, in a population study of parents of children with Down syn-
drome in Tennessee, the overall risk of divorce was equal to and even
slightly less than that of parents whose children did not have a disability
(Urbano & Hodapp, 2007). However, risk of divorce was heightened
during the first 2 years of life of the child with Down syndrome. The au-
thors hypothesized that this was because stress may be particularly high
during these first few years as this corresponds to the timing of diagnosis
(eg, prenatally or after birth) and often medical problems. Thus, different
behavioral phenotypes and diagnoses patterns between disability types
likely not only impact overall martial quality, but also when in the life
course marital relationship might be the most vulnerable. Working to
further understand life course patterns of marital risk and resiliency is an
important area for continued research.
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Examining the mechanisms by which some couples fare better than others. As in
the parentechild literature, there has been a move away from between-
group differences to understanding why some marital relationships might
be at-risk. Hartley, Seltzer, et al. (2011) have proposed a modified version
of the vulnerability-stress-adaptation model (Karney & Bradbury, 1995) to
guide inquiry into the factors shaping marital quality in the parents of young
and grown children with IDD. In this model, vulnerability factors (stable or
long-standing parent or family factors) make some parents susceptible to
poor marital quality, independent of having a son or daughter with IDD.
Moreover, these vulnerability factors interact with stressors related to the
challenges of parenting a son or daughter with IDD. Finally, the adaptation
processes that parents use to manage and cope with these stressors
influence the extent to which they experience negative couple interactions.
Over time, the accumulation of negative couple interactions leads to poor
marital quality.
Over the last several years, several vulnerability factors have been iden-
tified as being related to poor marital quality in parents of individuals with
ASD. These include parents’ personality traits or broader autism phenotype
symptoms (ie, mild autism-like traits), parental age when their son or
daughter with IDD was born, parental education, household income,
and presence of multiple children with special health needs in the family
(eg, Ekas, Timmons, Pruitt, Ghilain, & Alassandri, 2015; Hartley et al.,
2010; Namkung, Song, Greenberg, Mailick, & Floyd, 2015). While
some of these vulnerability factors (eg, parental education, household
income) are not unique to parents of individuals with IDD, there are
also differences in vulnerability factors between parents of individuals
with IDD and parents of individuals without disabilities. For example, in
a study of 190 parents of adult children with IDD and a comparison group
of 7251 parents of adult children without disabilities, the number of chil-
dren in the family was positively associated with risk of divorce through
parents’ midlife in the comparison group but was not associated with
divorce in the IDD group (Namkung et al., 2015). There also appears to
be motherefather differences in vulnerability factors for poor marital qual-
ity (Hartley, Papp, Blumenstock, Floyd, & Goetz, in press), that are in need
of further study. For example, in a study of 176 couples who had a child
with ASD (aged 5e12 years), household income and presence of multiple
children with special health care needs served as vulnerability factors for
having more frequent negative couple interactions only in fathers of chil-
dren with ASD.
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In terms of the stress components, the severity of the child-related stress

predicts, in part, differences in marital quality among parents of young and
grown individuals with ASD. Indeed, cross-sectional studies indicate that
severity of co-occurring behavior problems is related to differences in level
of marital satisfaction in parents of children with intellectual disability (eg,
Baker, Blacher, Crnic, & Edelbrock, 2002) and parents of adolescents and
adults with ASD (eg, Hartley, Barker, Seltzer, Floyd, & Greenberg, 2011).
Moreover, at a within-person level across an 8-year period, fluctuations in
maternal level of marital satisfaction were found to co-vary across time
with fluctuations in the severity of the adolescent or adult with ASD’s co-
occurring behavior problems (Hartley, Barker, Baker, Seltzer, & Greenberg,
2012). Thus, even in adulthood, the challenges of the individual with ASD
are intertwined with mothers’ level of marital satisfaction. Presence (or level)
of intellectual disability has been generally found not to be linked to marital
satisfaction or risk of divorce among parents of young or grown children
with ASD or other types of IDD (Baker et al., 2002; Hartley et al., 2010;
Hartley, Barker, et al., 2012), nor has the lifetime severity of ASD symptoms
in parents of adolescents and adults with ASD (Hartley et al., 2010). The
severity of co-occurring behavior problems has been found to be a stronger
predictor of parenting stress than intellectual functioning and severity of
ASD symptoms in parents of both young and grown children with IDD,
and thus it makes sense that the severity of co-occurring behaviors would
also have a greater association with marital satisfaction (eg, Abbeduto
et al., 2004; Lecavalier, Leone, & Wiltz, 2006).
There is also a need to better understand the mechanisms through which
stressors related to the individual with IDD lead to negative couple interac-
tions and eventually poor marital quality. In part, negative couple interac-
tions may be the direct result of experiencing a higher level of couple
disagreements about parenting the individual with IDD, as parents may sim-
ply be faced with a higher level of child-related challenges to solve. Indeed,
evidence from a 14-day daily diary study of 176 couples who had a child
with ASD (aged 5e12 years) found that daily couple problem-solving inter-
actions were frequently about the child with ASD (average of 25% of the
days during a 14-day daily diary), and the child with ASD was more
frequently the topic of couple problem-solving interactions than were other
children in the home (Hartley, Papp, Blumenstock, et al., in press). Howev-
er, couple problem-solving interactions about the child with ASD were not
associated with high levels of parental negative affect. Instead, couple prob-
lem-solving interactions about the couple relationship (ie, closeness) and
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partner behaviors (eg, communication, personality, and habits) were re-

ported to be the most distressing interactions. Thus, while they may
frequently occur, couple disagreements about the child with ASD do not
necessarily lead to negative couple interactions. It is not clear if this pattern
of findings would remain true for parents of adults with ASD and/or for par-
ents of young and grown children with types of IDDs.
Alternatively, poor marital quality in some parents of individuals with
IDD may reflect an indirect process of stress spillover from parenting
challenges. Indeed, evidence of a spillover process was also found in the
aforementioned daily diary study, in which the tension, affect, and behav-
iors originating from stressful parenting experiences carried into marital
experiences, after accounting for couple problem-solving interactions
about the child with ASD. Specifically, for mothers, experiencing a day
with a higher level of parenting stress predicted a lower number of positive
marital interactions (eg, meaningful conversations with partner, joking
with partner, and kissing and hugging partner) the following day (Hartley,
Papp, & Bolt, 2016). Thus, at a daily level, a higher level of parenting stress
may reduce emotional resources, leaving mothers of individuals with ASD
less likely to engage in positive marital interactions. Over time, a low num-
ber of positive marital interactions is problematic for marital quality, as such
interactions are needed to offset the impact of negative couple interactions
to maintain healthy relationships in studies on the general population
(Gottman, 1993).
Unfortunately, little research has examined couple-level adaptation pro-
cesses in parents of individuals with IDD. From studies on parents of chil-
dren with ASD, partner support has strong associations with positive and
negative daily affect (eg, Ekas et al., 2015; Pottie, Cohen, & Ingram,
2009). Thus, partner support may be a critical adaptation process for success-
ful marital quality in the context of having a young or grown child with
IDD. Future studies should focus on understanding dyadic coping processes
(ie couple-level ability to offer and receive support and jointly deal with
stress) and couple conflict processes (ie, factors related to how couples handle
disagreements or problem-solving issues), as how couples handle conflict is
arguably one of the most robust predictors of long-term marital outcomes in
studies on the general population (eg, Finkel, Slotter, Luchies, Walton, &
Gross, 2013; Gottman, 1993; Park & Unutzer, 2014). To better understand
how couples navigate conflict (eg, avoidance, demand-withdrawal patterns,
and stalemate), we need to perform observational studies of actual couple
interacting.
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Considering the interactive effects of multiple relationships. In the field of IDD,

there is a tendency to attribute parent outcomes, including marital quality, to
the individual with IDD. Indeed, the majority of research on marital quality
has focused on the impact of the individual with IDD on parents’ marital
outcomes. However, it is also important to understand how parents’ marital
quality influences the functioning of the individual with IDD and/or
parenting experiences. In the Hartley et al. (2016) study involving a
14-day daily diary study, for mothers, experiencing a day with a higher
number of negative marital interactions (eg, made a critical comment to
partner, avoided partner, and expressed frustration with partner) predicted
a higher level of parenting stress the following day. In other words, the nega-
tive affect, tension, and behaviors originating from negative marital interac-
tions also spilled over into parenting experiences for mothers of individuals
with ASD. Thus, at least in this study, the link between marital quality and
parenting stress was found to flow bidirectionally.
In sum, the current research reflects a significant increase in knowledge
about marital relationships of families of individuals with IDD, particularly in
considering the unique experiences of families of adults as distinct from fam-
ilies of children. Research has progressed from studies of between-group dif-
ferences to understanding the varied and interactive factors that allow some
couples to thrive and place others at-risk; this has been a considerable
advance and one that should continue in future research.
In the next section, we discuss the research on siblings of adolescents and
adults with IDD. This family member is less often included in research, yet
plays a very important role in the lives of individuals with IDD, particularly
in adulthood.
3. RELATIONSHIPS AND WELL-BEING AMONG

SIBLINGS OF ADOLESCENTS AND ADULTS WITH IDD
Although most family research focuses on parents of individuals with
disabilities, it is important to recognize the roles of other family members
such as siblings. Regardless of whether or not a disability is present, siblings
have the longest lasting familial relationship (Cicirelli, 1982). When a
disability is present, the sibling without a disability may fulfill unique roles
such as advocate (Burke, Arnold, & Owen, 2015), supporter (Kramer,
Hall, & Heller, 2013), and eventual caregiver (Burke, Taylor, Urbano, &
Hodapp, 2012; Orsmond & Seltzer, 2000). As we review the past and pre-
sent of sibling research, note that we refer to the typically developing
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member of the sibling pair as the “sibling” and the individual with IDD as
the “brother or sister.”
3.1 Past Research

Similar to both the parentechild and marital literature, many past studies of
siblings tended to focus on group differences, examining whether psycho-
logical functioning and the sibling relationships differed between siblings
of individuals with IDD versus those without disabilities. Although adult sib-
lings generally report frequent phone and in-person contact with their
brothers and sisters with IDD (Krauss, Seltzer, Gordon, & Friedman,
1996), Zetlin (1986) found substantial variability in the types of relationships
between siblings and their brother/sister, ranging from frequent contacts and
very warm feelings, to hostile feelings with little to no contact.
Just as Zetlin (1986) found variability in sibling closeness and contact
within her sample, there is also variability between studies regarding the
impact of having a brother or sister with IDD on sibling relationship
closeness. For example, Begun (1989) examined relationship closeness of
siblings to their brother or sister with IDD and to a typically developing
brother or sister (thereby controlling for family effects). She found that
siblings reported less closeness with their brother/sister with IDD (relative
to their brother or sister without a disability). On the other hand, McHale,
Sloan, and Simeonsson (1986) found no difference in the quality of sibling
relationships among siblings of individuals with ASD, intellectual disability,
and without disability. More recent research has continued this theme.
Using a population-based cohort of siblings (the Wisconsin Longitudinal
Study), Taylor, Greenberg, Seltzer, and Floyd (2008) found that siblings
of adults with mild intellectual deficits tended to have more contact with
family members than siblings of typically developing adults, but reported
less affective closeness.
Other adult sibling studies have moved beyond the impact of having a
brother or sister with versus without a disability, to instead examine whether
the type of disability infers a differential impact on sibling well-being and the
sibling relationship. These studies have suggested that having a brother or
sister with a mental illness or with an ASD might infer the greatest risk.
For example, Seltzer. Greenberg, Krauss, Gordon, and Judge (1997) found
that, relative to siblings of adults with a mental illness, siblings of adults with
IDD reported greater psychological well-being including feelings of self-
acceptance, autonomy, and personal growth. Their study also suggested
that siblings of individuals with IDD (versus mental illness) reported closer
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sibling relationships and were more likely to report that their brothers/sisters
positively impacted their lives across many areas (eg, professions, partners). In
a more recent study in this same vein, Hodapp and Urbano (2007) found
that, relative to siblings of adults with Down syndrome, siblings of individ-
uals with ASD reported less close and warm sibling relationships, fewer con-
tacts with their brothers and sisters, as well as worse health and more
depressive symptoms. Thus, although findings appear mixed about whether
siblings of adults with IDD have poorer quality of sibling relationships
compared to typically developing sibships, the type of disability seems an
important contributor to sibling well-being and the sibling relationship.
Although most early sibling studies focused on children, another theme
in earlier studies examined the characteristics of adult siblings who would
become primary caregivers for their brother/sister with IDD. Because indi-
viduals with IDD are living longer lives, with more adults outliving their
parents (Braddock et al., 2005), studies of future caregiving began to gain
traction in the 1990s. As one example, Greenberg, Seltzer, Orsmond, and
Krauss (1999) examined the factors associated with siblings’ expectation to
assume primary caregiving, using a sample of 61 siblings of individuals
with mental illness and 119 siblings of individuals with IDD. They found
that those siblings most likely to anticipate future caregiving were sisters, sib-
lings who did not have minor children living at home, and siblings who lived
in closer proximity and who felt emotionally closer to their brother/sister
with disabilities. Similarly, Krauss et al. (1996) examined the factors associ-
ated with siblings’ expectation to coreside with their brother or sister with
IDD in the future. They found that 19% of siblings anticipated living
with their brother/sister with IDD. Predictors of anticipated coresiding
mirrored predictors of anticipated primary caregiving: female (versus
male), having more shared activities with the brother/sister with IDD, living
in closer proximity to the brother/sister, and feeling emotionally closer to
him/her. Additionally, siblings of individuals with less severe disabilities
and less problem behaviors were more likely to report anticipating coresi-
dence. A more recent study corroborated many of these earlier findings:
in a large survey (N ¼ 757) of siblings of adults with IDD, female (versus
male) siblings and those who were closer to their brother or sister (both
physically and emotionally) were again more likely to anticipate future care-
giving roles (Burke et al., 2012). Burke et al. (2012) also found a significant
role of the number of siblings in the family on the likelihood of caregiving.
Specially, they found that those siblings who had no other typically devel-
oping brothers or sisters in the sibship (ie, they were the only nondisabled
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sibling) were more likely to expect to provide future caregiving than siblings
who had other typically developing brothers or sisters in their family.

In alignment with the larger family literature, recent sibling research has
tended to move beyond a focus on between-group differences, toward
examining the specific factors that might promote better relationship quality
with the brother/sister with IDD or improved sibling well-being. Studies
are also beginning to incorporate a family systems perspective by considering
multiple relationships simultaneously as well as the impact of multiple family
members (parents, typically developing siblings) on the sibling relationship.
Finally, current sibling caregiving research is seeking to understand differ-
ences between anticipated caregiving and actual assumption of care. Each
of these areas is explained further in the following discussion, with represen-
tative studies.
Factors that impact the sibling relationship and sibling well-being. Much of the
current sibling research focuses on understanding how characteristics of the
sibling, the brother or sister with IDD, and other family demographic vari-
ables affect sibling functioning and relationships. Consistent with other areas
of family research, one characteristic of the brother or sister with IDD that
consistently emerges as a predictor of sibling functioning and relationships is
behavior problems. Studies using maternal report as well as sibling report
have found that adolescent and adult siblings have better well-being and
more positive sibling relationships when their brothers and sisters with
IDD have fewer behavior problems (Orsmond, Kuo, & Seltzer, 2009;
Pruchno, Patrick, & Burant, 1996; Shivers, Diesenroth, & Taylor, 2013;
Taylor & Hodapp, 2012). As well, Taylor and Hodapp (2012) found that
siblings of brothers and sisters with greater functional abilities reported
feeling closer to that brother/sister. However, when their brothers or sisters
with IDD had more unmet service needs, siblings reported less closeness in
the sibling relationship as well as more depressive symptoms. Finally,
Orsmond et al. (2009) reported that adult siblings of individuals with
ASD who were older (eg, in their 30s or 40s) reported fewer shared activities
with their brothers and sisters than siblings of younger individuals (eg, in
their teens or 20s). This last finding is particularly interesting, and may be
because older siblings are more likely to have their own family and work ob-
ligations, leaving less time for shared activities.
In terms of characteristics of the sibling himself or herself, the most
consistent correlate of relationship quality with the brother/sister with
IDD is gender. In addition to being more likely to assume primary care
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for their brothers or sisters with IDD, female siblings report being (or are
reported to be) closer to and more involved with their brother/sister with
IDD than male siblings (eg, Hodapp, Urbano, & Burke, 2010; Orsmond
& Seltzer, 2000; Seltzer, Begun, Seltzer, & Krauss, 1991). Interestingly,
Orsmond and Seltzer (2000) found that the sex of the adult with IDD
was also an important determinant of the sibling relationship, but only for
male siblings. That is, male siblings of sisters with IDD reported fewer pos-
itive feelings and greater negative feelings about their involvement in the
sibling relationship relative to male siblings of brothers with IDD. For female
siblings, however, the sex of the brother/sister with IDD did not affect the
sibling relationship.
Although the body of research is quite small, a few family demographic
characteristics have been implicated in sibling well-being and the sibling
relationship. Having more brothers and sisters in a family might serve as a
protective factor; Pruchno et al. (1996) found that mothers reported closer
sibling relationships when there were more typically developing siblings in
the family, and Orsmond et al. (2009) found greater psychological well-
being among adolescent siblings with larger sibships. Furthermore, Taylor
and Hodapp (2012) found that physical distance between siblings was
important to the sibling relationship, with siblings reporting a closer affective
relationship when there was less distance between their residence and the
residence of the brother or sister with IDD.
Interplay between parents, siblings, and the brother/sister with IDD. In
addition to focusing on how the characteristics of the sibling dyad might in-
fluence well-being and the sibling relationship, more recent research has also
examined the role of parental support, characteristics, and relationships. These
studies generally find that, when parents provide emotional and instrumental
support to both the sibling and the brother/sister with IDD, siblings report
greater closeness in the sibling relationship as well as better psychological
functioning. For example, Orsmond et al. (2009) considered the role of a
number of family background characteristics and sibling resources in the re-
lationships of adult siblings to their brother/sister with ASD. The only predic-
tor of sibling relationship quality was the level of social support provided by
parents, with siblings feeling closer to their brother or sister when their parents
were more supportive. Finally, the extent to which parents are capable of
providing care to the brother or sister with IDD seems to be important
for both sibling well-being and the sibling relationship, particularly in adult-
hood. Specifically, siblings whose parents are more able to care for the
brother/sister with IDD tend to have fewer depressive symptoms (Taylor &
Hodapp, 2012). Given the interwoven lives of parents, siblings, and
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individuals with IDDdparticularly as parents age and consider transitions of

caredit will continue to be important to understand how each of these
different aspects of the family unit impacts sibling functioning and
relationships.
Anticipating caregiving versus actual caregiving. Sibling caregiving remains
an important area of research. As already mentioned, individuals with
IDD often outlive their parents (Braddock et al., 2005). However, it has
become clear that the adult service delivery system is unable to meet the
needs of all adults with disabilities. Over 75% of adults with IDD live
with their families while waiting for services (Braddock, Hemp, & Rizzolo,
2008). Due to the inadequacy of the service delivery system and the longer
lives of individuals with disabilities, adult siblings are increasingly fulfilling
formal caregiving roles.
As noted previously, earlier studies on this topic tended to focus on
siblings’ expectations to fulfill future caregiving roles as opposed to exam-
ining siblings who are current caregivers. However, not all siblings who
expect to become primary caregivers end up doing so. Freedman, Krauss,
and Seltzer (1997) found that, at least in terms of coresidence, twice as
many siblings expected to coreside with their brother or sister with IDD
than actually ended up doing so (19% vs 10%).
Thus, it is important to examine the differences between anticipatory
and current sibling caregivers. To this end, Burke, Fish, and Lawton
(2015) conducted a qualitative study comparing anticipatory and current
sibling caregivers. Both caregiver groups were knowledgeable about and
invested in their brothers and sisters with disabilities. Yet, each caregiver
group had different challenges related to their roles. Current caregivers
reported struggling to understand and navigate the service delivery system.
In contrast, anticipatory caregivers were concerned about future planning.
Mixed viewpoints were expressed about receiving pay for providing care,
although more current (versus anticipated) caregivers were receptive to
paid caregiving as a means to supporting their own families.
Given that many siblings anticipate fulfilling future caregiving responsi-
bilities, we need to understand the transition of caregiving from parents to
siblings. Coyle, Kramer, and Mutchler (2014) conducted interviews with
siblings who had recently transitioned to caregiving roles. Siblings reported
struggling to meet the aging-related needs of their brothers and sisters. Also,
siblings reported that their transitions to caregiving roles were facilitated
when future planning occurred and support was available. Although recog-
nized as important, future planning seems to be infrequently practiced
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among families of individuals with IDD. Notably, future planning is more

likely to occur when the sibling is older in age, more involved in disability
activities, and provides more support to the brother or sister (Heller &
Kramer, 2009). As individuals with IDD continue to live longer lives in
the paucity of appropriately funded adult disability support, it is critical to
better understand the characteristics of siblings who assume primary care-
giving for their brother/sister, as well as the reasons why anticipated care-
giving does not come to fruition. Perhaps most importantly, we need to
know how best to support siblings before, during, and after assuming care.
4. SUMMARY OF PAST AND PRESENT RESEARCH

There are a number of overlapping themes in family research when
there is an adolescent or adult with IDD. Past research across all areas
(parentechild, marital, and sibling) has moved from considering adult rela-
tionships as an extension of relationships in childhood, to recognizing that
families of adults with IDD are important to study in their own right. Across
all relationships, research has also moved from descriptions of group differ-
ences to understanding the interplay of multiple factors that place family re-
lationships or members at-risk or that lead them to thrive. Furthermore,
perhaps one of the most consistent findings across all types of family relation-
ships is the detrimental impact on all family members of high levels of
behavior problems among adolescents and adults with IDD. Behavior prob-
lems lead to parental stress, problems in the parentechild relationship,
marital strain, sibling distress, and less likelihood that siblings will feel close
to their brother or sister and expect to provide care for them in the future.
Furthermore, it is worth noting that the effect of family size seems to work
differently in families of individuals with disabilities. In contrast to the typical
idea of larger family sizes resulting in the dilution of resources and thus worse
outcomes among children (eg, Downey, 1995), findings among sibling of
individuals with IDD suggest that larger families serve as a protective factor,
likely because (at least in part) there are more individuals to distribute care-
giving. We now turn to recommendations for future research.
5. DIRECTIONS FOR FUTURE RESEARCH WITH

FAMILIES OF ADOLESCENTS AND ADULTS WITH IDD
Many of the recommendations for future research on families of ado-
lescents and adults with IDD are issues that are important to address for
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families across the lifespan (and not just families of adolescents/adults). We

have outlined in the following sections six key directions for future research
for families of individuals with IDD, and we highlight how each of these
areas might be particularly relevant for families of adolescents and adults.
5.1 Moving Beyond Group Differences

Looking forward, the field needs to continue to move beyond identifying
average group differences (ie, IDD versus comparison group) in broad
markers of the parentechild relationship (eg, parenting stress), marital qual-
ity (eg, global marital satisfaction or divorce/separation), and sibling relation-
ship (eg, sibling contact, closeness). Instead, we need to elucidate the specific
dyad- and family-level processes through which having a son or daughter
with IDD contributes to difficult relationships in some families, while other
families thrive. Modified versions of the vulnerability-stress-adaptation model
appear to offer a useful framework, not only for the marital relationship
but also for family relationships more generally. But more work is needed
to identify relevant vulnerability, stressors, and adaptation processes.
5.2 Including More Representative Samples

Although a handful of studies have examined families who have a member
with IDD using population-based samples (eg, Namkung et al., 2015; Piazza
et al., 2014; Taylor et al., 2008), most family research relies on samples of
convenience. Studies that use convenience or clinical samples run the risk
of being nonrepresentative, meaning that the experiences of families that
chose to participate in studies or that have access to the clinic are likely
different than those who do not. Oftentimes, it is families that have the
highest level of needdparticularly economic needdthat are not included
(Shattuck et al., 2012). It is unclear to what extent findings and recommen-
dations generated from convenience samples will generalize to families of
lower socioeconomic position, and thus it is important to conduct family
research with samples that represent the entire population of individuals
with IDD. This is particularly crucial for studies that are attempting to char-
acterize the amount and types of need, as well as the most effective ways to
support families.
Similarly, future research also needs to include culturally and linguisti-
cally diverse families. To date, most studies of individuals with IDD and their
families primarily include white families (Hodapp, Glidden, & Kaiser, 2005;
Shattuck et al., 2012). It is important to understand how family member
functioning and family relationships might differ across different
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racial/ethnic groups. Specifically, culturally and ethnically diverse families

are likely to have greater difficulty accessing services (eg, Liptak et al.,
2008; Shattuck, Wagner, Narendorf, Sterzing, & Hensley, 2011; Taylor &
Henninger, 2015) and thus their needs and the corresponding appropriate
supports are likely different from those of white families. To conduct
research with culturally and linguistically diverse populations, research
should be culturally responsive. Thus, to recruit such participants, re-
searchers may need to alter their methods to be more aligned with different
populations. For example, with respect to Latino families of individuals with
intellectual disabilities, Maga~na (2000) outlines several ways to make
research more culturally responsive in the development of a study, partici-
pant recruitment, measures, data collection, and analysis. Additionally, Bal
and Trainor (2015) developed a rubric to help researchers conduct culturally
responsive intervention studies. These tools may be helpful in facilitating
research with diverse families.
However, future research needs to go beyond just including culturally
and linguistically diverse families, by specifically addressing the associations
between cultural values/backgrounds and family relationships. This may
be particularly important to consider as it relates to care decisions of aging
parents and siblings. Although past studies have shown differences across
cultural groups in the meaning of disability and the impact of disability on
the family (Neely-Barnes & Marcenko, 2004), our understanding of these
factors and how services and supports should be informed by them is still
rather limited, particularly among older families, with much of the work be-
ing qualitative in nature. For example, McCallion, Janicki, and Grant-
Griffin (1997) conducted focus groups with a wide range of cultural groups
and found multiple differences across groups including the definition of
disability and family, family roles and expectations, family cultural values,
and willingness to access services. Subsequent qualitative studies with Afri-
can-American and Latino parents of children with disabilities have also
shown cultural differences, suggesting that to best support families and
parentechild interactions, service providers need to be aware of unique
worldviews and how they impact service utilization (Blanche, Diaz, Bar-
retto, & Cermak, 2015; Terhune, 2005). For example, for Latino parents,
important predictors of lower stress include increased levels of acculturation
(Long, Kao, Plante, Seifer, & Lobato, 2015; Maga~ na, Schwartz, Rubert, &
Szapocznik, 2006) and familism (ie, a belief in the commitment of family
members to their family relationships; Steidel & Contreras, 2003). Among
African-American families of individuals with IDD, lower parental stress
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and depression are predicted by greater religious connectedness (Rogers-

Dulan, 1998). More work is needed to fully understand the range of diverse
family experiences and attitudes, particularly about family care, transitions,
and the aging process, as these differences should inform our theoretical
models and guide intervention development.
Beyond racial/ethnic or socioeconomic diversity, other types of family
diversity may also impact relationships and caregiving. For example, most
studies of couples parenting an individual with IDD have focused on hetero-
sexual married partnerships. While many findings are likely to extend to
same-sex partnerships and/or longstanding partnerships outside of a legal
marriage, there is a need for future studies to include these families. Other
examples of family diversity are the presence of extended family members
in the household, parental marital status, or the number of siblings (particu-
larly whether there is one sibling without a disability in the family vs. more
than one; Burke et al., 2012). How each of these factors impacts family
member well-being, family relationships, and future caregiving is not fully
understood and should continue to be the focus of future research.
5.3 Understanding the Experience of All Members of the

Family
Nearly all research on families of individuals with IDD focuses on the expe-
rience of one family member, mostly the mother, sometimes the sibling, and
rarely the father or the person with IDD. Yet family systems theory suggests
that family relationships and dynamics are interactive, and each relationship
depends on the others. Furthermore, each person in the relationship likely
experiences it differently and is differentially impacted by that relationship.
Thus, we need to conduct research that includes multiple family members’
perspectivesdthe parent, sibling, and the individual with IDD.
Including the adult with IDD, in particular, might be daunting for re-
searchers. However, there are some examples of how this can be effectively
accomplished. Kramer et al. (2013) overcame some of the potential barriers
by having an interviewer establish rapport, rephrase questions, allow more
time for the individual with IDD to respond, and allow that person to
choose a support person to be present during the interview (Mactavish,
MacKay, Iwasaki, & Betteridge, 2007). Dyadic interviewing (ie, interview-
ing an individual with an intellectual disability and a support person chosen
by that individual) may be an effective way to include individuals with IDD
in qualitative research (Caldwell, 2013). Regardless of potential difficulty, it
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is important that the experiences of individuals with IDD themselves are

considered in future research on family functioning and relationships.
Another critical area for future family research in IDD is understanding
the unique experience and contribution of fathers. As with the general
parenting literature (Pleck, 2012), the role of fathers in the lives of adoles-
cents and adults with IDD is currently understudied. Although some
work has examined the impact of having a son or daughter with a disability
on paternal well-being (eg, Hartley, Seltzer, et al., 2012), little work has
applied a transactional perspective to fathers. What is known is that fathers
of children with IDD have heightened levels of depression and stress
compared to fathers of children without disabilities and that, like mothers,
child behavior problems are a significant predictor of well-being (Giallo
et al., 2015). To more fully understand the role and impact of fathering,
the field will likely need new measures specifically designed to assess
fathering for adolescents and adults with IDD (Ly & Goldberg, 2014),
particularly when considering the unique, nonnormative aspects of father
involvement in the lives of their adult children and as families age.
In addition, many studies have only included mothers’ ratings of marital
quality and thus much less is known about the marital experiences of fathers
of individuals with IDD. Studies that have included individual ratings of
marital quality of both mothers and fathers suggest important differences
in both the vulnerability factors and links between parenting experiences
and marital functioning (Hartley et al., 2016; Hartley, Barker, et al.,
2011; Hartley, Papp, Blumenstock, et al., in press). In a cross-sectional
study, Hartley, Barker, et al. (2011) found that global marital quality was
more strongly related to the parenting experiences of fathers than mothers
of adolescents and adults with ASD. However, when parents of children
with ASD (aged 5e12 years) were studied at a daily level, the association
between parenting stress and positive and negative marital interactions
was stronger for mothers than for fathers (Hartley et al., 2016). Thus, mech-
anisms linking parenting and marital experiences may operate differently for
mothers and fathers, and their effects might differ depending on the stage of
the lifespan of their son or daughter (eg, early childhood, adolescence,
adult).
Relatedly, in sibling research, studies often focus on the perspectives of
the most involved siblings, usually sisters of individuals with IDD. Although
important, the perspectives of the most involved siblings may not represent
the perspectives of all siblings. One way to collect a more representative
sample is to randomly choose the sibling to be included in a given research
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study or to choose siblings based on a characteristic other than their relation-

ship involvement (eg, choosing the sibling closest in age to the brother/sister
with IDD). However, a more holistic way to have a representative sibling
sample is to include the perspectives of each sibling in a given family in a
research study. In this way, we could better understand how each individual
perceives his or her sibling relationship, well-being, and responsibilities as
siblings.
Finally, the children of typically developing siblings who have a brother
or sister with IDD have been virtually ignored in research studies. Siblings of
adults with IDD have been referred to as the “club sandwich generation”
(Meyer & Holl, 2015), simultaneously providing care for their aging parents,
brothers and sisters with IDD, and their own children. Thus, research may
need to consider the effects of multiple caregiving responsibilities on the
children of these siblings. For example, do children of siblings become
more empathetic because they are watching their parents provide care for
their aunts and uncles with IDD? So far, such questions have been left unan-
swered, yet they have important implications for the types of supports
needed by typically developing siblings and their children.
5.4 Longitudinal Studies That Consider Key Turning Points

and Directions of Effects
Longitudinal research can aid in identifying predictors, mediators, and
moderators of family relationships, well-being, roles, and responsibilities.
Although there have been a fair number of longitudinal studies of parents
and the parentechild relationship, most studies of the marital or sibling
relationship have been cross-sectional. Cross-sectional studies provide a
jumping off point to understanding the influence of, for example, the
type of disability of the brother/sister on the sibling relationship (Bagenholm
& Gillberg, 1991; Hodapp & Urbano, 2007; Roeyers & Mycke, 1995).
They cannot, however, accurately identify how these relationships will
change or what predicts relationships that improve versus worsen over
time. Only with longitudinal datasets can we observe and predict how
family relationships unfold while individuals with IDD progress through
adolescence and adulthood.
Furthermore, adults with IDD experience several life transitions (eg, exit
out of high school, navigating employment and/or adult disability services,
transition out of the family home, and transition of guardianship). There is a
need to better understand how these changes impact and/or are impacted
by parents and siblings (including parental and sibling well-being, the
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parentechild relationship, parents’ marital quality, and the sibling relation-

ship). For example, in a study of parents of youth with ASD, Taylor and
Seltzer (2011a) found evidence for a negative effect of high school exit on
the parentechild relationship. Specifically, improvements in relationship
quality, parental burden, and parental warmth slowed and even stopped
(and in the case of burden, worsened) after their son or daughter left high
school. In their study of 199 continuously married mothers of adolescents
and adults with ASD across 8 years, Hartley, Barker, et al. (2012) found
that having the adult with ASD transition out of the family home was not
associated with a change in marital satisfaction . However, in another study,
parents who coresided with their adult child with IDD (mixed etiology
group) were less likely to be divorced than were parents whose adult child
with IDD lived elsewhere (Seltzer et al., 2011). As time-order pathways
could not be teased out in this study, it is not clear if following a separa-
tion/divorce the adult child with IDD was more likely to transition out
of the house or if this transition occurred prior to the separation/divorce.
Moreover, third variables (eg, physical or psychological health of the parent)
may have triggered both parental separation/divorce and the transition of
the adult with IDD out of the family home. This topic deserves more
attention.
Given the longer lives of individuals with IDD, longitudinal research is
also needed to understand how sibling and parent well-being, relationships,
roles, and responsibilities change as individuals with IDD age, and especially
as caregiving shifts from parents to another person (likely siblings). Parents
and siblings are often not able to anticipate how caregiving and shifts in re-
sponsibility of care will unfold over time (see Burke et al., 2012; Burke Fish,
et al., 2015; Krauss et al., 1996). Furthermore, virtually nothing is known
about the impact of providing care on the well-being and marital quality
of the sibling or other relative caregivers. Longitudinal studies can help to
answer important questions about predictors of shifts in caregiving, the needs
of parent caregivers both before and after relinquishing care, as well as the
needs of sibling caregivers before and after assuming care.
Finally, and perhaps most importantly, longitudinal studies allow for the
determination of directions of effects, which is critical for designing and
delivering effective interventions. Examining bi-directional relations are
becoming more common when examining associations between parents
and their adolescent/adult offspring with IDD (eg, Greenberg, Seltzer,
Hong, & Orsmond, 2006; Smith, Greenberg, et al., 2008; Woodman,
Smith, et al., 2015), but they rarely occur in studies of siblings of individual
ARTICLE IN PRESS
with IDD or in studies of the marital relationship. There is a need to better

understand the impact of marital quality and of the sibling relationship on
the functioning of adults with IDD. This direction of effects has been largely
overlooked in IDD research.
5.5 Considering Positive Outcomes

Although research on parentechild relationships and sibling relationships
has begun to consider the positive ways that parents and siblings might be
impacted by having a family member with IDD, to date research on the
marital relationship has focused on negative marital quality and the child
and parent factors associated with these negative outcomes. However, it is
equally important to understand aspects of positive marital quality and fac-
tors associated with why some couples thrive, and may even become closer,
in the face of having a young or grown child with IDD. Studies have exam-
ined positive couple processes in parents of children with ASD (Ekas et al.,
2015) and this work should be expanded on and extended to parents of
adults with IDD. Furthermore, with very few exceptions (eg, Taylor &
Shivers, 2011), studies of adult sibling psychosocial outcomes focus on the
potential negative impacts of having a brother/sister with IDD. Although
many studies have examined predictors of positive sibling relationships,
research on siblings’ own personal development tends to have a lens of
psychological risk instead of the ways that siblings might benefit from having
a brother or sister with IDD. Future research should move toward a holistic
view of the lives of these siblings and all family members, including the
factors that might put them at-risk (in order to provide appropriate supports)
as well as the unique advantages that might be afforded to them by their
experiences.
5.6 Developing and Implementing Effective Supports for

Families
Finally, another key future direction in family research during adolescence
and adulthood is to better understand how to support families, as well as
the societal costs and implications for failing to do so. For instance, research
suggests that parenting a son or daughter with a disability negatively impacts
employment patterns and income for mothers (Heller et al., 2007; Parish,
Seltzer, Greenberg, & Floyd, 2004), as mothers often must cease employ-
ment or adjust work to care for their child in the absence of adequate sup-
ports. This care continues well past the age when most parents of typically
developing offspring are providing active caregiving. Compared to families
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of children without disabilities, families of children with disabilities also have

significantly more material hardship such as food insecurity and housing
instability (Parish, Rose, Grinstein-Weiss, Richman, & Andrews, 2008).
There is a need for improved methods of data collection on the specific sup-
ports that families naturalistically provide to their family members with IDD,
particularly as increasing numbers of individuals continue to live with family
members as they age (Rizzolo, Hemp, Braddock, & Schindler, 2009). In the
coming decades, documenting formal and informal supports, and the con-
texts and timing in which they are most advantageous, will be critical for
guiding policies and practices to improve quality of life for families of indi-
viduals with IDD.
This information must then be used to develop and pilot interventions to
better support families. To date, there are few interventions that have been
developed specifically to support families of adolescents/adults with IDD
(Burke, Patton, & Taylor, in press), but promising models have recently
emerged. For example, mindfulness-based stress reduction approaches
have been shown to lower stress and anxiety for parents of individuals
with IDD (Dykens, Fisher, Taylor, Lambert, & Miodrag, 2014). Other
approaches include psychoeducational programs for parents of adults with
ASD, focused on sharing information and problem solving (Smith,
Greenberg, & Mailick, 2014), and trainings specifically targeted at helping
parents of youth and adults with IDD develop advocacy skills and navigate
the adult disability service system on behalf of their son/daughter (Taylor,
Hodapp, Burke, & Rabideau, 2016). In terms of potential sibling interven-
tions, past research suggests that future planning interventions might be
particularly fruitful. One current intervention for future planning is called
the “Future is Now” (Heller & Caldwell, 2006). An intervention which in-
cludes parents and the individual with IDD, the Future Is Now has been
shown to increase future planning and reduce caregiving burden. Such an
intervention may need to be adapted to include siblings of individuals
with IDD in the future planning process. Relatedly, other interventions
should also be created and tested for siblings to address sibling well-being,
relationships, roles, and responsibilities.
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Família e Deficiência Intelectual

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ARTICLE IN PRESS

Families of Adolescents and

1. PARENT WELL-BEING AND THE PARENTeCHILD

out-of-home placement, including long-term decision making and plan-

1.2 Present State of Research

adulthood, predictors of motherechild relationship quality included the

shape the developmental course regardless of etiology. For example, in a

2. MARITAL QUALITY IN FAMILIES OF ADOLESCENTS

2.2 Present State of Research

In terms of the stress components, the severity of the child-related stress

partner behaviors (eg, communication, personality, and habits) were re-

Considering the interactive effects of multiple relationships. In the ﬁeld of IDD,

3. RELATIONSHIPS AND WELL-BEING AMONG

3.1 Past Research

3.2 Present State of Research

individuals with IDDdparticularly as parents age and consider transitions of

among families of individuals with IDD. Notably, future planning is more

4. SUMMARY OF PAST AND PRESENT RESEARCH

5. DIRECTIONS FOR FUTURE RESEARCH WITH

families across the lifespan (and not just families of adolescents/adults). We

5.1 Moving Beyond Group Differences

5.2 Including More Representative Samples

racial/ethnic groups. Speciﬁcally, culturally and ethnically diverse families

and depression are predicted by greater religious connectedness (Rogers-

5.3 Understanding the Experience of All Members of the

is important that the experiences of individuals with IDD themselves are

study or to choose siblings based on a characteristic other than their relation-

5.4 Longitudinal Studies That Consider Key Turning Points

parentechild relationship, parents’ marital quality, and the sibling relation-

with IDD or in studies of the marital relationship. There is a need to better

5.5 Considering Positive Outcomes

5.6 Developing and Implementing Effective Supports for

of children without disabilities, families of children with disabilities also have

Cicirelli, V. G. (1982). Sibling inﬂuence throughout the life-span. In M. E. Lamb, &

Terhune, P. S. (2005). African-American developmental disability discourses: implications

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