Family Support: A Review of The Literature of Families of Adolescents With Disabilities

Journal of Family Social Work
ISSN: 1052-2158 (Print) 1540-4072 (Online) Journal homepage: http://www.tandfonline.com/loi/wfsw20
Family support: A review of the literature of

families of adolescents with disabilities
Meghan M. Burke, Kimberly A. Patton & Julie Lounds Taylor
To cite this article: Meghan M. Burke, Kimberly A. Patton & Julie Lounds Taylor (2016): Family
support: A review of the literature of families of adolescents with disabilities, Journal of Family
Social Work, DOI: 10.1080/10522158.2016.1214658
To link to this article: http://dx.doi.org/10.1080/10522158.2016.1214658
Published online: 13 Sep 2016.
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Download by: [University of California, San Diego] Date: 14 September 2016, At: 13:05
JOURNAL OF FAMILY SOCIAL WORK
http://dx.doi.org/10.1080/10522158.2016.1214658
PRACTICE AND CONCEPTUAL ARTICLE
Family support: A review of the literature of families of

adolescents with disabilities
Meghan M. Burkea, Kimberly A. Pattona, and Julie Lounds Taylorb,c
a
Department of Special Education, University of Illinois at Urbana-Champaign, Champaign, Illinois,
USA; bVanderbilt Kennedy Center, Vanderbilt University, Nashville, Tennessee, USA; cDepartment of
Pediatrics, Vanderbilt University School of Medicine, Nashville, Tennessee, USA
ABSTRACT ARTICLE HISTORY

For all youth, adolescence is a time of great change, marked by Received 4 November 2015
multiple transitions. For those with disabilities, these transitions Revised 11 July 2016
can be especially challenging for the youth and their families. Accepted 12 July 2016
Although families of adolescents with disabilities often require KEYWORDS
support, it is unclear what types of assistance are most helpful. Adolescence; disabilities;
To understand the responsibilities of and, correspondingly, sup- families; family support
ports needed for parents and siblings, the authors conducted a
comprehensive literature review. Specifically, the authors exam-
ined the literature to identify the supports that families provide
to their adolescent relatives with disabilities, the impacts of
caring for an adolescent relative with a disability, and the assis-
tance that families receive. The authors conclude by discussing
implications for future research about family support.
For all youth and their families, adolescence is a time of tremendous

change. Not only do adolescents undergo rapid physical and pubertal
development, but also this stage of the life span is characterized by transi-
tions in social roles and identity development. According to traditional
theories, one of the primary tasks of adolescence is the development of
autonomy and self-identity (Baltes & Silverberg, 1994). This autonomy is
manifested by significant transformation in the parent–child relationship,
often involving some degree of separation (Silverberg & Gondoli, 1996). At
the same time as youth are individuating from parents, peer relationships
take a more important role (Steinberg & Silverberg, 1986). All of these
changes lead to adolescence being experienced as a stressful time for many
parents (Silverberg & Steinberg, 1990; Small, Eastman, & Cornelius, 1988).
In addition to the normative changes during this stage of the lifespan,
adolescents with disabilities and their families face additional challenges
(Chambers, Rabren, & Dunn, 2009). Youth with intellectual disabilities, for
example, may have difficulty understanding and managing the physical
changes associated with puberty. For youth with social impairments, such
CONTACT Meghan M. Burke meghanbm@illinois.edu Department of Special Education, University of

Illinois at Urbana-Champaign, 1310 S. 6th Street, Champaign, IL 61820.
© 2016 Taylor & Francis
2 M. M. BURKE ET AL.
as those with an autism spectrum disorder (ASD), the increased social

demands and primacy of peer relationships during adolescence can lead to
increased loneliness and isolation (Lasgaard, Nielsen, Eriksen, & Goossens,
2010). Perhaps one of the greatest additional challenges faced by families of
youth with disabilities during this time is the shift from school to adult-based
services. After leaving high school, even more of the onus of responsibility
for finding, coordinating, and maintaining formal services that benefit their
son/daughter tends to fall on parents.
Although the role of families remains critical in supporting their relatives
with disabilities during adolescence and beyond, little is known about how
best to aid parents and siblings during this time. Before determining how to
most effectively support families of adolescents with disabilities, it is neces-
sary to first understand what supports are needed by carefully examining the
caregiving roles and responsibilities assumed by families. It is also important
to understand how family members might be affected by providing care to
adolescents with disabilities, as well as what types of assistance families
typically receive. By understanding the supports that families provide, the
impact of caregiving, and the assistance they receive, we can better under-
stand the support needs of families of adolescents with disabilities.
The purpose of this literature review was to examine support provided
by and given to families of adolescents with disabilities. Specifically, we
had three research questions: (1) What supports do families provide to
their adolescent family members with disabilities? (2) What is the impact
on family members to provide care and support to their relative with a
disability? and (3) What assistance do families of adolescents with dis-
abilities receive? Of note, when we refer to family members and relatives,
such terms generally refer to parents and/or siblings of adolescents with
disabilities.
Method
Search procedures
Studies pertaining to families of adolescents with disabilities (defined
broadly, including developmental disabilities and behavioral/mental health
problems) were identified through a variety of sources, such as electronic
databases (i.e., EBSCO, ERIC, GoogleScholar, PubMed, ProQuest) and refer-
ence lists from all retrieved studies. We excluded all white papers, books,
book chapters, working or conference papers and proceedings, master’s
theses, and dissertations. Searches included all relevant synonyms and related
terms including family support, adolescent, and disability in combination with
different key terms such as autism, Down syndrome, cerebral palsy, bipolar
disorder, obsessive-compulsive disorder, epilepsy, hearing impairment, visual
JOURNAL OF FAMILY SOCIAL WORK 3
impairment, attention-deficit/hyperactivity disorder, chronic health condition,

asthma, traumatic brain injury, depression, intellectual disability, and devel-
opmental disability. Articles included in this review met the following inclu-
sionary criteria: (1) Empirical, peer-reviewed studies; (2) studies focused on
(or including) adolescents with disabilities (ages 12–17); and (3) studies
related to families of adolescents with disabilities. We identified 43 studies
that reflected the state of the literature regarding families of adolescents with
disabilities. See Table 1 for information about the studies.
Descriptive information
We did not restrict the year of publication and instead included all studies
that met the aforementioned criteria; the studies retrieved in our literature
search were published between 1989 and 2015. Of the 43 studies, 30.2%
(n = 13) addressed the types of support a family member provides to their
adolescent relative with a disability (i.e., our first research question). Nearly
one half (48.8% or n = 21) of the studies addressed the effect on families of
caring for an adolescent with a disability (i.e., Research Question 2) and
20.9% (n = 9) addressed supports for families of adolescents with disabilities
(i.e., Research Question 3).
Across all of the studies, there were 14,582 participants. Eleven of the
studies did not provide any information about the race or ethnicity of the
sample. In studies where information about participant race was provided,
85% had majority samples (n = 27 out of 32). In the remaining five studies,
two samples were 100% Latino (Magaña, Li, Miranda, & de Sayu, 2015;
Shapiro, Monzó, Rueda, Gomez, & Blacher, 2004) and three samples repre-
sented a range of racial diversity including African American, Latino, Asian
American, and White participants (Chang & Schaller, 2000; Geenen, Powers,
& Lopez-Vasquez, 2001; Laugeson, Frankel, Mogil, & Dillon, 2009). With
respect to the type of participant, 23 studies (53.5%) only included parents of
adolescents with disabilities, eight studies (18.6%) included adolescents and
parents, four studies (9.3%) included adolescents only, four studies (9.3%)
included siblings only, three studies (7.0%) included adolescents and their
family members, and one study (2.3%) included parents and siblings. Of the
24 studies that only included parents, 11 studies (45.8%) only included
mothers, 12 studies (50.0%) included mothers and fathers, and one study
(4.2%) only included fathers.
The types of disabilities varied across studies. The most common type of
disability was ASD (34.9% or n = 15). Seven (16.3%) studies had samples
with varied types of disabilities; four (9.3%) had samples of adolescents with
intellectual disabilities, and three (7.0%) had samples of adolescents with
developmental disabilities. There were two studies for each of the following
types of disabilities: Cerebral palsy, spina bifida, obsessive-compulsive
4
Table 1. Study characteristics.

Has a non-
disability
comparison
Authors RQ Sample Race/ethnicity Type of disability Study design Sample type Data collected group
Kraemer & Blacher (2001) 1 52 parents 76.9% White 100% Severe ID Qualitative Convenience Cross-sectional No
9.6% Latina (interviews and
7.7% African surveys)
M. M. BURKE ET AL.
American
5.8% Other
Timmons et al. (2004) 1 30 parents 76.7% White Mixed Qualitative (focus Convenience Cross-sectional No
16.7% Latino group, interview)
6.7% African
American
Cooney (2002) 1 9 adolescents No information 100% Severe Qualitative Convenience Longitudinal No
9 parents provided disabilities (observation,
7 teachers interview)
8 professionals
Hanley-Maxwell et al. 1 14 parents 80% White 33% Mild ID Qualitative Convenience Cross-sectional No
(1995) 13% African 53% Moderate ID (interviews)
American
7% Native 13% Severe ID
American
Geenen et al. (2001) 1 308 parents 50.6% African 27% Mild disabilities Quantitative Convenience Cross-sectional No
American (survey)
52 professionals 28.3% White 33% Moderate
disabilities
11% Hispanic 29% Severe
disabilities
10.1% Native 11% Very severe
American disabilities
(Continued )
Table 1. (Continued).
Has a non-
disability
comparison
Burkhard (2013) 1 11 mothers 100% White 100% cerebral palsy Qualitative Convenience Cross-sectional No
(interview)
Fong, Wilgosh, & Sobsey 1 8 parents No information 100% ASD Qualitative Convenience Cross-sectional No
(1993) provided (interview)
Shapiro et al. (2004) 1 16 mothers 100% Latina 100% Qualitative (focus Convenience Cross-sectional No
Developmental group)
disabilities
Smith et al. (2010) 1 96 mothers of individuals 91.5% White 29.5% ASD Quantitative Convenience Longitudinal Yes
with ASD (survey)
230 mothers of individuals 70.5% Without
without disabilities disabilities
Chang & Schaller (2000) 1 12 adolescents 50% White 100% Visual Qualitative Convenience Longitudinal No
25% African impairments (interview, journal,
American observations)
25% Mexican
American
Bellin et al. (2007) 1 31 adolescents 97% White 100% Spina bifida Qualitative Convenience Cross-sectional No
(interview)
Cuskelly & Gunn (2003) 1 54 siblings of individuals No information 50% Down Quantitative Representative Cross-sectional Yes
with Down syndrome and provided syndrome (survey, interview)
their parents
54 individuals without 50% Without
disabilities and their parents disabilities
McHale & Gamble (1989) 1 31 siblings of individuals No information 50% ID Qualitative (survey, Convenience Longitudinal Yes
with ID provided interview)

31 siblings of individuals 50% without ID
without ID
5
(Continued )
6
Has a non-
disability
comparison
Hartley et al. (2010) 2 391 parents of individuals 93.1% White 50% ASD Quantitative Convenience Longitudinal Yes
with ASD (survey, interview)
391 parents of individuals 50% without ASD
M. M. BURKE ET AL.
without disabilities
Prange et al. (1992) 2 353 parent/adolescent dyads 71% White 100% Severe Quantitative Convenience Cross-sectional Yes
421 adolescents and 2,224 19% African emotional (interview, survey)
parents in normative sample American disturbance
7% Hispanic
3% Other
Esposito-Smythers et al. 2 389 parent/adolescent dyads 84% White 100% Pediatric Quantitative Convenience Cross-sectional No
(2006) bipolar disorder (survey, interview)
Orsmond et al. (2007) 2 325 mothers 93.5% White 100% ASD Quantitative Convenience Cross-sectional No
(survey, interviews)
Magill-Evans et al. (2001) 2 90 adolescents with cerebral Information not 54.5% Cerebral palsy Quantitative Convenience Cross-sectional Yes
palsy and family members provided (survey, interview)
75 adolescents without 45.5% Without
cerebral palsy and family cerebral palsy
members
Cohen et al. (2009) 2 204 parent/adolescent dyads 99.1% White 100% Chronic pain Quantitative Convenience Cross-sectional No
(survey)
Abbeduto et al. (2004) 2 235 mothers No information 74.0% ASD Quantitative Convenience Cross-sectional No
provided 16.6% Down (survey)
syndrome
9.4% Fragile X
syndrome
(Continued )
Has a non-
disability
comparison
Hartley et al. (2012) 2 240 fathers “Vast majority of 56.3% ASD Quantitative Convenience Cross-sectional No
fathers were 24.6% Down (survey)
Caucasian” syndrome
19.1% Fragile X
syndrome
Baker, Smith, Greenberg, 2 149 mothers 91% White 100% ASD Quantitative Convenience Longitudinal No
Seltzer, & Taylor (2011) (survey, interview)
Klein et al. (2001) 2 699 adolescents and their 93% White 40% Major Quantitative Representative Longitudinal Yes
2,202 first-degree relatives depressive disorder (interview, survey)
16.4% Non-mood
disorder
43.4% No disability
Seltzer et al. (2010) 2 86 mothers of individuals No information 33.5% ASD Quantitative (diary, Convenience Longitudinal Yes
with ASD provided interview, survey)
171 mothers of individuals 66.5% without ASD
without ASD
Mitchell & Hauser-Cram 2 73 mother/adolescent dyads 93% White 100% Quantitative Convenience Cross-sectional No
(2008) Developmental (interview, survey)
disabilities
Lewis et al. (2006) 2 47 mother/adolescent dyads 97.8% White 40.4% Fragile X Quantitative Convenience Cross-sectional No
syndrome (survey)
40.4% Down
syndrome
19.1% Fragile X
syndrome and co-
morbid ASD
(Continued )
7
8
Has a non-
disability
comparison
Smith et al. (2008) 2 352 mothers 89.2% White 100% ASD Mixed methods Convenience Longitudinal No
(interview, survey)
M. M. BURKE ET AL.
Magaña & Smith (2006) 2 108 mothers 81.5% White 100% ASD Mixed method Representative Cross-sectional No
18.5% Latina (interview, survey)
Carr & Lord (2013) 2 110 mothers 72.7% White 100% ASD Quantitative Convenience Longitudinal No
27.3% African (survey, interview)
American
Jandasek, Holmbeck, 2 68 parents/adolescent dyads 82% White 50% Spina bifida Mixed methods Convenience Longitudinal Yes
DeLucia, Zebracki, & with spina bifida (survey,
Friendman (2009) 68 parents/adolescent dyads 50% No disability observation)
without spina bifida
Hartley et al. (2011) 2 91 married couples 98.9% White 100% ASD Mixed methods Convenience Cross-sectional No
(survey, interview)
Lardieri et al. (2000) 2 18 siblings of individuals 74% White 28.4% LD and Quantitative Convenience Cross-sectional Yes
with LWD without BP behavior problems (survey, interview)
(BP) (n = 19)
19 siblings of individuals 21% Latino 28.4% No LD and
with LD with BP no BP (n = 19)
11 siblings of individuals 5% African 26.8% Learning
with BP without LD American disabilities (LD)
(n = 18)
19 siblings of individuals 16.4% BP and no
without LD or BP LD (n = 11)
Shivers et al. (2013) 2 1755 siblings Information not 100% ASD Quantitative Convenience Cross-sectional No
provided (survey)
(Continued )
Has a non-
disability
comparison
Orsmond et al. (2009) 2 198 siblings Primarily White 100% ASD Quantitative Convenience Cross-sectional No
(survey, interview)
Smith et al. (2012) 3 269 mothers 95% White 100% ASD Quantitative Convenience Longitudinal No
(survey, interview)
Magaña et al., 2015 3 90 mothers 100% Latina 27.8% cerebral palsy Quantitative Convenience Longitudinal No
18.9% ASD (survey)
15.6% Down
syndrome
10% ID
3.3% Other
24.4% Unknown
Smith et al. (2012) 3 11 parents Information not 100% ASD Quantitative Convenience Longitudinal No
provided (survey)
Miklowitz et al. (2004) 3 20 parent/adolescent dyads 90% White 100% Bipolar Quantitative Convenience Longitudinal No
disorder (survey)
Jacqueline & Margo, 2005 3 14 parent/adolescent dyads Information not 100% Obsessive- Quantitative Convenience Longitudinal No
provided compulsive disorder (survey)
Storch et al. (2010) 3 30 adolescents 76.6% White 100% obsessive- Quantitative Convenience Longitudinal No
10% Hispanic compulsive disorder (survey)
American
6.7% African
American
6.7% Asian
Young et al. (2014) 3 29 parents 93.1% White 72% High incidence Quantitative Convenience Longitudinal No
disabilities (survey)
6.9% Hispanic 28% Low incidence
disabilities
9
(Continued )
10
Has a non-
disability
M. M. BURKE ET AL.
comparison
Wall & Gast (1997) 3 4 adolescents with Information not 100% ID Quantitative (single Convenience Longitudinal No
disabilities provided case design)
4 parents or siblings of
adolescents with
disabilities
Laugeson et al. (2009) 3 33 adolescents 42.4% White 100% ASD Quantitative Convenience Longitudinal No
18.2% Latino (survey)
12.1% Asian
9.1% African
American
9.1% Middle
Eastern
9.1% Mixed
ethnicity
Note. RQ = research question; ID = intellectual disability; ASD = autism spectrum disorder; LD = learning disability; BP = behavior problems.
Adolescent always refers to the adolescent with a disability (vs. typically developing siblings). In studies with a control group from a representative sample and a disability group
from a convenience sample, we marked them as having convenience samples.
disorder, and bipolar disorder. Finally, there was one study of each of the
following types of disabilities: Visual impairments, Down syndrome, severe
emotional disorder, chronic pain, depression, and learning disabilities.
Regarding methodology, 65.2% (n = 28) of the studies used quantitative
methods, 23.3% (n = 10) used qualitative methods, 9.3% (n = 4) used
mixed methods and one study (2.3%) was a single case design.
Results
Question 1. Supports families provide for their adolescent family members
with disabilities
Families reported providing support for their adolescent relatives with
disabilities in several ways. Most frequently, families—specifically parents
—reported navigating the transition process and service delivery system.
Research indicated that parents of adolescents with (vs. without) disabilities
spent more time with their children. Also, parents provided emotional
support to their children to overcome the stressors of adolescence. With
respect to siblings, studies found that siblings begin to anticipate caregiving
roles during adolescence. Below, we review the extant literature about
family members (i.e., parents and siblings) supporting their adolescent
family members with disabilities.
Parents navigating the transition process and service delivery system

One way that parents support their adolescent offspring with disabilities is by
navigating the transition process. Adolescents with disabilities and their
families often struggle during the transition from school to adult services
(Bianco, Garrison-Wade, Tobin, & Lehmann, 2009; Hetherington et al., 2010;
Shattuck et al., 2012; Taylor, 2009). During adolescence, individuals with
disabilities who are accustomed to receiving special education supports begin
to transition to multiple eligibility-driven (vs. entitlement-driven) service
delivery systems. Recognizing the difficult transition from school to adult
services, the Individuals with Disabilities Education Act (IDEA) requires
students who are receiving special education services to have transition
plans in place by age 16. Transition plans are required to address postschool
outcomes including education and training, employment, and, if appropriate,
independent living.
Parents are supposed to be integral members of transition planning.
However, during the transition process, they report more involvement in
certain facets of transition than others. In a study of 52 parents of
transition-aged youth with intellectual disabilities, Kraemer and Blacher
(2001) found that most parents reported being involved in transition
programming, work-related activities, and finding vocational placements.
However, parents were less involved in finding residential placements.

Overall, parents reported wanting greater involvement in the transition
process.
Many studies have indicated that parents find the transition process to be
confusing and difficult to navigate. For example, Timmons, Whitney-Thomas,
McIntyre, Butterworth, and Allen (2004) conducted qualitative interviews and
focus groups with 30 parents of adolescents with various types of disabilities
(e.g., learning disabilities, Down syndrome, attention deficit disorder). Parents
consistently stated that their biggest challenge and responsibility was finding
and accessing the services to help them plan for their son/daughter’s adult life.
Parents described the service delivery system as “inconsistent, complex, and
unresponsive” (p. 21). They reported exerting much time and effort trying to
identify appropriate services for their children. Other studies have similarly
reported that parents struggled to navigate the transition process. Cooney
(2002) conducted interviews with nine youth with severe disabilities as well
as their parents (n = 9), teachers (n = 7), and adult service professionals (n = 8).
Parents reported that navigating the transition process was troublesome and
that they felt uncertain about many aspects of the transition process including
outcomes, terms and procedures, and barriers.
One way that parents assist in transition planning is by helping articulate a
vision for their son/daughter’s future. In an interview study of 14 parents of
adolescents with varying levels of intellectual disability, Hanley-Maxwell,
Whitney-Thomas, and Pogoloff (1995) found that parents tended to have a
well-thought-out vision for the future of their child, and that they judged the
quality of school services by whether their son/daughter was fulfilling or
moving toward that vision. Their results indicated that to have high-quality
transition planning, all aspects of the life of the youth must be addressed.
Although transition issues among cultural/ethnically diverse groups is
significantly under-researched, there is some evidence to suggest that parent
involvement in the transition process, and the perception of that involve-
ment, differs by cultural/ethic group. Geenen et al. (2001) conducted a survey
study on this topic with 308 African American, Hispanic American, Native
American and White parents of adolescents with disabilities as well as 52
school professionals. In most instances, culturally diverse and White parents
reported similarly high levels of involvement in the transition process.
However, in some instances (e.g., talking to the adolescent about life after
high school, teaching children about cultural values and beliefs), the involve-
ment of culturally diverse parents exceeded the involvement of White par-
ents. In one instance (i.e., involvement at school meetings), White parents
reported significantly greater involvement than culturally diverse parents. Yet
school professionals viewed White (vs. culturally diverse) parents as more
involved in the transition process.
Uncertain futures. Parents have reported feeling great uncertainty about the
futures of their adolescent offspring with disabilities. Specifically, Burkhard
(2013) interviewed 11 mothers of adolescents with cerebral palsy about their
son/daughter’s transition to adulthood. Parents discussed how the transition
from the school to adult service delivery system, with respect to education and
health care, created concerns about the future. Parents expressed trepidation
about navigating adult services for their sons and daughters. Many parents
described thinking about the future as “scary” and “overwhelming” (p. 361).
Advocacy. For their adolescent family members with disabilities, parents

discussed the need to advocate for educational services. In a qualitative
study of eight parents of adolescents with ASD, Fong, Wilgosh, and Sobsey
(1993) found that parents struggled to receive appropriate educational ser-
vices for their children. When speaking about the educational process,
parents reported that they had to fight for appropriate services and supports.
Only when parents advocated for services, did their children receive needed
supports.
Similarly, Latina mothers of adolescents with developmental disabilities
also report advocating for services (Shapiro et al., 2004). In a qualitative study
using focus groups with 16 low-income Latina mothers, Shapiro and collea-
gues (2004) found that mothers engaged in advocacy activities across multi-
ple service delivery systems (e.g., the school, adult services). Advocacy
seemed to be a reaction to: poor communication between professionals and
families, little effort exerted by professionals to help families, negative atti-
tude and treatment of families by professionals, and the mother’s role of
ensuring the well-being of her child. The advocacy efforts of the participants
were described as “alienated advocacy” (p. 46) as the mothers were not
advocating to be a part of a working team with professionals but rather
using more confrontational advocacy to ensure that their children were not
neglected.
Parents spending time with their adolescent children with disabilities.

Compared to parents of adolescents who develop typically, parents of ado-
lescents with disabilities may spend more time with their children. Smith
et al. (2010) used daily diary information collected over 8 days to compare 96
coresiding mothers of adolescents with ASD to a nationally representative
sample of mothers of adolescents without disabilities. Mothers of children
with ASD spent an average of 5 hours a day on child care activities, which
was significantly more than the 3 hours spent by mothers of children without
disabilities. Also, compared to mothers of children without disabilities,
mothers of children with ASD reported more fatigue, arguments, and stress-
ful events. However, mothers of adolescents with (and without) ASD
reported similar levels of positive events.
Parents helping their adolescents with disabilities overcome stress. Parents

provide support to their sons/daughters with disabilities to help them
overcome common adolescent stressors as well as stress pertaining to
their disability. In a qualitative study, Chang and Schaller (2000) examined
the perceptions of 12 adolescents with visual impairments about the sup-
port that they receive from their parents. Using interviews, field notes, a
reflexive journal, informal observations, and timelines of life events, ado-
lescents reported receiving emotional, informational, and tangible support.
Emotional support included parents: Offering a safe place wherein the
youth felt unconditionally loved by the parent, including the youth in
family activities, and acknowledging and validating the emotions of the
youth. Informational support entailed the parent sharing information to
the youth about visual impairments, relationships with friends, and perso-
nal interests. Tangible aid involved parents providing resources, services,
or materials to the child. Aid could relate to encouraging the personal
interests of the youth, achieving the career goals of the youth, and obtain-
ing needed services.
Bellin, Sawin, Roux, Buran, and Brei (2007) conducted a qualitative study
with 31 adolescent women with spina bifida. The participants reported
several stressors including teasing and bullying, school-related stressors
(e.g., homework, test-taking), challenges with spina bifida (e.g., managing
incontinence, worrying about future health), and mobility concerns (e.g.,
dealing with inaccessible places). A commonly reported coping mechanism
to address such stressors was parent support. Participants described close
relationships with their parents. Notably, there was an absence of adoles-
cent–parent conflict.
Siblings supporting their adolescent brothers and sisters with disabilities.

Although most of the studies identified for this section focused on the care
provided by parents of adolescents with disabilities, sibling support is also
important. For example, Cuskelly and Gunn (2003) compared 54 siblings of
adolescents with Down syndrome to 54 siblings of adolescents without
Down syndrome. Siblings of adolescents with (vs. without) Down syn-
drome engaged in more caregiving activities. Among siblings of individuals
with Down syndrome, more caregiving was associated with greater empa-
thy. In another study of 31 adolescent siblings of individuals with intellec-
tual disabilities, McHale and Gamble (1989) also found that, compared to
31 siblings of individuals without disabilities, siblings of individuals with
disabilities reported more caregiving activities. Female (vs. male) siblings of
individuals with intellectual disabilities reported greater caregiving activ-
ities. Additionally, compared to siblings of children without disabilities,
siblings of children with disabilities reported fewer sibling conflicts.
Summary of Question 1. With respect to supporting adolescent children

with disabilities, parents reported several responsibilities including accessing
services for their children, spending time with their sons/daughters, and
helping the adolescents overcome stressors. It seems as though parents may
struggle not only with current responsibilities but also the anticipation of
future caregiving responsibilities. A smaller body of literature identified
sibling caregiving as an important source of support for adolescents with
disabilities.
Question 2. The impact on families of providing support to adolescents

with disabilities
In this section, we discuss studies that examined the impact of caregiving on
parents and siblings. Although positive and negative effects have been noted,
the bulk of previous research has focused on negative outcomes.
Negative impacts for parents of adolescents with disabilities

Negative outcomes associated with caring for an adolescent son/daughter
with (vs. without) a disability include less life satisfaction, greater anxiety,
increased depression, more stress, poorer health, more pessimism and
increased risk of burden. Details are provided below. Note that the majority
of these studies solely included mothers (vs. fathers) of individuals with
disabilities.
Higher divorce rates. Hartley et al. (2010) compared the divorce rates of 391
parents of individuals with ASD to those with offspring without disabilities.
Among parents of children without disabilities, the risk of divorce begins to
decline during late childhood/early adolescence. In contrast, among parents
of individuals with ASD, the risk for divorce remains high during adoles-
cence and early adulthood. Thus, for parents of young children, the risk of
divorce is the same regardless of whether the child has ASD. However, when
a child reaches adolescence, parents of individuals with (vs. without) ASD
have a greater risk of divorce.
Less family cohesion. Studies have also found that families of adolescents
with disabilities experience less family cohesion. Prange et al. (1992) com-
pared 353 pairs of adolescents with severe emotional disturbances and their
parents to 2,645 adolescents without disabilities and their parents. Parents
of adolescents with (vs. without) severe emotional disturbances reported
that their family relations were more disengaged and less connected. Less
family cohesion was significantly correlated with adolescent variables such
as the presence of: Conduct disorder, depression, alcohol/marijuana use,
and externalizing behaviors. The relation between difficulties in cohesion
and externalizing problems was supported by the results of a study by

Esposito-Smythers et al. (2006), who examined 389 adolescents with psy-
chiatric disorders and their parents. When the youth had an externalizing
disorder (with or without a co-occurring anxiety disorder), family cohesion
was lower and family conflict was higher.
In addition to child characteristics, the number of children with disabilities
in the family may also affect family cohesion as well as maternal and family
well-being. This was investigated by Orsmond, Lin, and Seltzer (2007) in a
study of 325 families of adolescents and adults with ASD. Compared to
mothers who had one child with a disability (i.e., the target offspring with
ASD), mothers who were parenting two children with disabilities (including
the adolescent with ASD and another child with a disability) reported lower
family adaptability and less cohesion. Also, mothers with two children with
disabilities (vs. one child with ASD) had higher levels of depressive symp-
toms and anxiety.
Less life satisfaction. Magill-Evans, Darrah, Pain, Adkins, and Kratochvil

(2001) conducted a study comparing 90 families of adolescents with cerebral
palsy to 75 families of adolescents without physical disabilities. Surveys were
conducted with the adolescent with cerebral palsy, the mother, the father,
and a sibling. Fathers of children with (vs. without) cerebral palsy reported
lower life satisfaction; no differences in life satisfaction by disability group
were observed for mothers or siblings. Compared to parents of children
without physical disabilities, mothers and fathers of children with cerebral
palsy reported lower expectations for future independence and success for
their children.
Greater anxiety and depression. Parents of adolescents with disabilities may

experience greater depression and anxiety, which is likely affected by adoles-
cent characteristics. Cohen, Vowles, and Eccleston (2009) conducted a study
with 204 adolescents with chronic pain and various disabilities (e.g., complex
regional pain syndrome, hypermobility syndrome) and their parents (in sum,
N = 408). Parents of adolescents with greater (vs. less) chronic pain reported
significantly greater stress, depression, and anxiety. Stress and mental health
symptoms were particularly elevated when the adolescents had lower levels of
physical functioning and greater pain-specific anxiety.
The type of disability may be associated with whether parents experience
elevated depressive symptoms. Abbeduto, Seltzer, and Shattuck (2004) com-
pared the psychological well-being of mothers of adolescents with Down
syndrome (n = 39), ASD (n = 174), and Fragile X syndrome (n = 22).
Mothers of adolescents with ASD (vs. Down syndrome and Fragile X syn-
drome) reported significantly higher levels of depressive symptoms.
Predictors of increased depressive symptoms included lower family income,
greater behavior problems in the adolescent with a disability, and if the

mother used emotion-focused coping. After controlling for these factors
(i.e., income, behavior problems, coping), the type of disability no longer
predicted maternal depression. With respect to fathers, Hartley, Seltzer,
Head, and Abbeduto (2012) examined the psychological well-being and
depression among fathers of adolescents with Down syndrome (n = 59),
Fragile X syndrome (n = 46), and ASD (n = 135). Compared to fathers of
those with Fragile X syndrome and Down syndrome, fathers of adolescents
with ASD reported significantly higher levels of depressive symptoms.
Compared to fathers of adolescents with ASD and Fragile X syndrome,
fathers of those with Down syndrome reported lower levels of pessimism.
There were no differences in coping styles across the three groups of fathers.
Other child and parent characteristics may also impact parent anxiety and
depression. Baker, Seltzer, and Greenberg (2011) examined the trajectories of
depressive and anxiety symptoms in 149 mothers of adolescents and adults
with ASD. Data were collected across a 10-year period on five different
occasions. Child problem behaviors covaried with parent depression and
anxiety. That is, during times when the offspring had more problem beha-
viors, mothers reported more depressive and anxiety symptoms. Maternal
anxiety also covaried with the size of social support networks; during occa-
sions when mothers’ support networks were smaller, they reported higher
anxiety.
The presence of depression in adolescents is also associated with depres-
sive symptoms in parents. In a study of 268 adolescents with a history of
major depressive disorder, 110 adolescents with a history of nonmood dis-
orders (e.g., anxiety, substance abuse, disruptive behavior) but no history of
major depressive disorder, and 291 adolescents with no history of psycho-
pathology, Klein, Lewinsohn, Seeley, and Rohde (2001) conducted interviews
to examine the prevalence of depression in relatives (including parents and
siblings) of the participants. Compared to the other participants, relatives of
adolescents with major depressive disorder demonstrated significantly higher
risks of depression.
Greater stress. Studies of parents of children with disabilities consistently

find elevated levels of stress (e.g., Hayes & Watson, 2013; Theule, Wiener,
Tannock, & Jenkins, 2013); yet, in our literature search, we found few studies
that focused on stress levels specifically among parents of adolescents with
disabilities. Using cortisol as an indicator of stress levels, Seltzer et al. (2010)
compared mothers of adolescents with ASD (n = 86) to mothers of those
without disabilities (n = 171). Mothers in the ASD group had lower cortisol
levels across the day, suggesting greater chronic stress. Indications of stress
were also evident when looking at the effects of the son/daughter’s behavior
problems. For mothers of adolescents with ASD, when their offspring
regularly exhibited high levels of behavior problems (and, thus, mothers were
likely more chronically stressed), there was less of a cortisol response (i.e.,
morning rise) to daily behavioral issues, relative to mothers of adolescents
who tended to have lower levels of behavior problems. These findings point
to chronic stress experienced by parents of adolescents with ASD, which
blunts their physiological responses to daily stressors.
Mitchell and Hauser-Cram (2008) conducted a survey study to discern
whether medical care utilization and satisfaction with health care affected
maternal stress in a sample of 73 adolescents with developmental disabilities
and their mothers (in sum, N = 146). Mothers who were more satisfied with
their son/daughter’s health care and who had a greater household income
reported experiencing less stress. When the adolescent had better health and
fewer behavior problems, mothers also reported less stress.
Greater pessimism and conflict. Parents of adolescents with certain types

of disabilities may experience greater pessimism and conflict. Lewis et al.
(2006) compared the psychological well-being of mothers of adolescents
with disabilities across three groups: Fragile X syndrome and a comorbid
diagnosis of ASD (n = 9), Fragile X syndrome alone (n = 19), and Down
syndrome (n = 19); in total, there were 47 mother–adolescent dyads.
Regardless of whether the adolescent had ASD, mothers of adolescents
with Fragile X (vs. Down syndrome) reported more pessimism about their
child’s future and more family conflict. Compared to the other two
groups, mothers of children with Fragile X syndrome and comorbid
ASD reported lower levels of reciprocated closeness (i.e., the closeness
of a parent toward the child and vice versa).
Greater anger. Smith, Seltzer, Tager-Flusberg, Greenberg, and Carter

(2008) conducted a study comparing the well-being of 151 mothers of
toddlers with ASD to 201 mothers of adolescents with ASD (in sum,
N = 352 mothers of children with ASD). There were no differences between
the groups with respect to coping strategies, levels of personal growth, or
depressive symptoms. However, mothers of adolescents (vs. toddlers) with
ASD reported greater anger. Among mothers of toddlers, predictors of
greater anger included using more emotion-focused coping styles. In sepa-
rate regression analyses, mothers of adolescents with ASD also reported
greater anger when they used more emotion-focused coping strategies, as
well as when they used fewer problem-focused coping strategies (specifically
less positive reinterpretation and growth).
Worse psychological well-being. Carr and Lord (2013) conducted a long-

itudinal study comparing psychological well-being between African
American and White mothers of offspring with ASD (N = 110). Examining
mothers when their children with ASD were age 9 and 14 years, regardless of
race, they found that maternal well-being significantly decreased over time.
Predictors of greater negative impact included: Little to no social support, a
diagnosis of autistic disorder (vs. pervasive developmental disorder not
otherwise specified or PDD-NOS), higher nonverbal cognitive scores, fewer
adaptive behavior skills, greater problem behaviors, and more hours of
individual treatment.
The impact of having an adolescent offspring with a disability on parent
psychological well-being may differ by cultural/ethnic group. Magaña and
Smith (2006) compared psychological well-being between 108 Latina and
non-Latina, White mothers of adolescents and adults with ASD. Non-Latina,
White (vs. Latina) mothers reported significantly worse psychological health
and greater anger and fatigue. The participants also rated their degree of
satisfaction with coresiding with their child with ASD. Non-Latina, White
(vs. Latina) mothers reported significantly less satisfaction.
Positive impacts for parents of adolescents with disabilities

In addition to studies about the negative impacts of parenting an adolescent
with a disability, some studies reported positive effects including close rela-
tionships and few family conflicts. Jandasek, DeLucia, Holmbeck, Zebrack,
and Friedman (2009) conducted a longitudinal study comparing 68 families
of adolescents with spina bifida to 68 families of adolescents without dis-
abilities. For families of adolescents with spina bifida, family conflict
decreased from pre- to early adolescence and stabilized around age 12. For
families of children without disabilities, family conflict was constant from
pre- to early adolescence and increased around age 12. Also, though both
groups of families reported declines in family cohesion during adolescence,
families of children with (vs. without) spina bifida reported fewer dramatic
declines. With respect to parent–child relationships during adolescence,
mothers (vs. fathers) of adolescents with ASD may experience closer relation-
ships. Hartley, Barker, Seltzer, Greenberg, and Floyd (2011) conducted a
study with 91 married mothers and fathers of adolescents and adults with
ASD. Mothers (vs. fathers) reported feeling closer to their children.
Impacts for siblings of adolescents with disabilities

Although there have been few studies of the impact on siblings of having an
adolescent brother or sister with a disability, positive and negative effects
have been found.
Negative impact: Greater behavior problems. Lardieri, Blacher, and

Swanson (2000) examined four groups of siblings: Siblings of individuals
with learning disabilities without behavior problems (n = 18), siblings of
individuals with learning disabilities with behavior problems (n = 19),
siblings of individuals with behavior problems but without learning dis-

abilities (n = 11), and siblings of individuals without learning disabilities
or behavior problems (n = 19). Parents and siblings completed measures
of sibling quality and behavior problems. According to parent report,
regardless of whether the adolescent had learning disabilities, siblings of
adolescents with (vs. without) behavior problems demonstrated signifi-
cantly greater internalizing and externalizing behavior problems.
According to sibling self-report, siblings of adolescents with (vs. without)
learning disabilities reported significantly greater externalizing behavior
problems; in contrast to the findings using parent-report, behavior pro-
blems of the adolescent did not relate to self-reported sibling behavior
problems.
In a study of 1,755 siblings of children and adolescents with ASD, Shivers,
Deisenroth, and Taylor (2013) also found that some siblings may be at risk
for internalizing problems. Male siblings of individuals with ASD had higher
rates of subclinical anxiety problems during middle childhood (but not early
childhood or adolescence). Female siblings did not have elevated anxiety
scores. Siblings at all ages were more likely to experience anxiety when
their brother or sister with ASD had more behavior problems.
Positive impact: Shared activities. Orsmond, Kuo, and Seltzer (2009) con-
ducted a study about sibling relationships with adolescents (n = 56) and
adults (n = 142) who had brothers or sisters with ASD. Compared to adult
siblings, adolescent siblings engaged in significantly more activities with
the brother/sister with ASD, such as going on vacation or to a medical
appointment. There were no differences between adolescent and adult
siblings with respect to depressive symptoms. Regarding coping strategies,
adult (vs. adolescent) siblings used more problem-focused coping strategies
and fewer emotion-focused coping strategies. Adolescents (vs. adults)
however, reported receiving greater support from their parents and
friends.
Summary of Question 2
Regarding the impact of providing support to adolescents with disabilities,
the majority of studies examined negative (vs. positive) impacts of caregiv-
ing. A wide range of negative outcomes was found, with the extent to
which families were affected dependent on the type of disability and the
severity of the adolescent son/daughter’s behavior problems. However, a
number of protective factors to buffer these negative effects were also
described, including social support and problem-focused coping strategies.
Note that this is not to say that families only reap negative effects of
caregiving, but rather that more research is needed to examine what the
positive effects might be.
Question 3. Assistance for families of adolescents with disabilities

Our literature review uncovered three types of assistance received by families
of adolescents with disabilities: Social support, caregiver support, and sup-
port received through participating in interventions for their adolescent
family members with disabilities.
Social support
Smith, Greenberg, and Seltzer (2012) conducted a study examining the social
support and well-being of mothers of adolescents and adults with ASD
(N = 269). Social support was operationalized as the number of members
in each parent’s social network; the type of support provided (positive or
negative) was also examined. Having a larger social network related to
improved maternal well-being over 18 months. Greater negative support
related to increases in depressive symptoms and negative affect.
Caregiver support interventions

Magaña et al. (2015) examined the effectiveness of a health education inter-
vention on the health and stress of Latina mothers of adolescents and adults
with intellectual and developmental disabilities (N = 90). Using the
Promotores de Salud model, the intervention (called “By Caring for Myself
I Care Better for my Family”) comprised an 8-week training wherein a
promotora (i.e., a lay health educator from the Latino community) delivered
each training session in the home of the participant. Using a randomized
control trial design, intervention (vs. control) participants demonstrated
significant increases in health-related self-efficacy, self-care, nutrition, and
overall health behaviors.
Another program focused on providing supports to parents is called
“Transitioning Together” (Smith, Greenberg, & Mailick, 2012). A multifamily
group psychoeducation intervention, Transitioning Together is comprised of
two individual-family sessions and eight multifamily group sessions. Group
sessions relate to a variety of topics relevant to ASD and the transition to
adulthood, and guided practice with real family problems. Youth with ASD
participate in separate but simultaneous group sessions. In a pilot study of 11
families of adolescents with ASD who participated in Transitioning Together,
participants demonstrated increased knowledge of the service system and the
child’s disability after completing the intervention, as well as improved
parent–child relationships, and greater warmth between parents and their
children.
Family participation in interventions for adolescents

Parents have been included in many interventions for their adolescents with
disabilities. Although these studies were focused on the effects of the
intervention on the adolescent (not the family), it is likely that families will
also benefit from these programs—particularly if the intervention results in
symptom improvement for the adolescent. For example, Miklowitz and
colleagues (2004) conducted a study examining family-focused psychoeduca-
tional treatment for adolescents (FFT-A) with bipolar disorders (N = 20).
The FFT-A included weekly family sessions that, over time, decreased to
monthly sessions, with 21 sessions over 9 months. If families were interested
in continuing treatment, they could receive maintenance sessions every
3 months for the next 15 months. The FFT-A is comprised of three compo-
nents: Psychoeducation for the family about bipolar disorder, communica-
tion enhancement training, and problem-solving skills training. Adolescents
who participated in the treatment had improvements in depressive and
mania symptoms as well as behavior problems; all of these improvements
maintained over 1 year.
Parents have also participated in cognitive-behavior therapy (CBT) for
adolescents with disabilities. Jacqueline and Margo (2005) conducted a
descriptive, group study of the effectiveness of cognitive-behavior therapy
on the psychiatric symptoms of 14 adolescents with obsessive-compulsive
disorder. As part of the intervention, adolescents and their parents partici-
pated in a 14-week CBT training. After the training, obsessive-compulsive
disorder symptoms decreased significantly. The self-reported depressive
symptoms of the adolescent participants also decreased. Regarding parents,
their perceived impact of the obsessive-compulsive symptoms and behavior
problems of their children significantly improved.
Storch et al. (2010) conducted a study to understand the effectiveness of
family-based CBT on the symptoms of 30 primarily White children and
adolescents with obsessive-compulsive disorder who were either nonrespon-
ders or partial responders to medication. Adolescents and their parents
participated in 14 sessions of family-based CBT. At posttreatment and the
3-month follow-up, 80% of the participants demonstrated improvements in
symptom severity. More than one half of the participants were reported to be
in remission at posttreatment or follow-up. After receiving the CBT, partici-
pants demonstrated fewer depressive symptoms, behavior problems, and
family accommodations.
Parents also participated in transition-specific trainings. Young, Morgan,
Callow-Heusser, and Lindstrom (2014) conducted a randomized control trial
comparing the effectiveness of a brochure only condition (n = 13) versus a
brochure plus 60-minute transition training (n = 16) on parent transition
knowledge. Parents of adolescents with different types of disabilities (e.g.,
learning disability, ASD, intellectual disability) participated in the study.
During the training, parents learned about services, eligibility for adult
services, and interacted with other parents. Participants completed a pre-
and postknowledge survey about transition services and were told to contact
a community service provider after completing the training. Results indicated

that participants in the brochure plus training (vs. brochure only) had greater
transition knowledge and were more likely to call a community service
provider.
Parents have participated in interventions to teach leisure skills to their
adolescents with intellectual disabilities. Wall and Gast (1997) conducted a
multiple probe, single-case design study with four parents using a 4-s
constant time delay procedure to teach leisure skills to their son/daughter.
Each of the four parents included in the study were able to effectively
deliver the systematic instruction and learners were successfully able to
develop leisure skills.
Social skills trainings for adolescents with ASD also include a parent
component. Laugeson et al. (2009) conducted a randomized controlled trial
to test the effectiveness of the Program for the Education and Enrichment of
Relational Skills (PEERS) intervention—an intervention comprised of twelve
90-minute sessions wherein the parents and adolescent attended separate,
concurrent sessions about making friends (N = 33). Compared to the control
group, the intervention group demonstrated significantly improved knowl-
edge of social skills, increased frequency of hosting social events, and
improved social skills (per parent report).
Summary of Question 3
Although a few studies have focused on supports for families of adolescents
with disabilities, the extent literature is minimal. There is some evidence to
suggest that informal social support and interventions focused on providing
care and support to parents can be beneficial. Most studies in this section
included parents as part of an intervention designed to improve outcomes for
the adolescent with a disability. It is possible that by increasing positive
outcomes for the adolescent with a disability, the family may reap some
benefits. Notably, none of the studies included supports for siblings of
adolescents with disabilities.
Overview of Research Questions 1, 2, and 3

In general, there are few studies focused on family supports for adolescents
with disabilities. Of the research questions explored in this review, the
majority of research has focused on describing the supports that parents
provide and the negative impacts of providing care to adolescents with
disabilities. Far fewer studies have examined the types of supports that
families receive or the positive impacts of having an adolescent son or
daughter with a disability. Further, sibling supports and impact are not
well understood. Of note, most of the findings in this review were only
supported by a single study.
Family members provide supports to their adolescents with disabilities in a

number of different ways, including facilitating the transition to adulthood,
and aiding them in dealing with normative stressors related to adolescence as
well as disability-specific stressors. Perhaps the most consistent finding
across these studies is the detrimental effect of behavioral problems; parents
and siblings of adolescents with disabilities and greater behavior problems
experience more psychological stress and distress. There is some suggestion
that the type of disability moderates the impact of providing care, with
families of adolescents with ASD and with emotional problems perhaps
being the most negatively affected. In the next section, we discuss directions
for future research.
Discussion
Below, we discuss gaps in the research and, correspondingly, directions for
future research and implications for social workers. Note that, though we will
discuss specific areas in which future research is warranted, many of the
conclusions drawn in this review were supported by only a single study.
Further, a number of the included studies had small samples. Thus, there
remains a significant need to understand whether the findings reported in
this review are replicable among other samples and other disability types.
Need for longitudinal research

The studies included in this review were primarily cross-sectional. Although
important, cross-sectional data can only reveal information about one time
point. By having longitudinal data, family support can be better understood
across the lifespan of the individual with a disability, alerting practitioners
and policy makers to different stages in time (e.g., adolescence) where
targeted family support interventions are needed. In our review, for example,
one study (Smith et al., 2008) compared parents of toddlers with ASD to
parents of adolescents with ASD, and another (Shivers et al., 2013) compared
siblings in early childhood, middle childhood, and adolescence. Although not
examining families longitudinally, these studies offered important insights
about how family member well-being may change over time. However, as
both of the aforementioned studies are vulnerable to cohort effects, long-
itudinal research is needed to best understand the changing needs of families
of individuals with disabilities across the lifespan.
Need for research about other family members

Most of the research included in this literature review focused on parents,
namely mothers, of adolescents with disabilities. In many senses, focusing on
mothers makes sense as mothers tend to be the primary caregivers (Hartley,

Mihaila, Otalora-Fadner, & Bussanich, 2014; Simmerman, Blacher, & Baker,
2001). However, other family members are also involved in caring for
adolescents with disabilities; the different roles other family members fulfill
likely involve different stressors and may require different supports. For
example, Essex, Seltzer, and Krauss (1999) found that mothers (vs. fathers)
of adults with intellectual disabilities reported significantly greater stress;
however, fathers (vs. mothers) reported more pessimism about their son/
daughter’s future. Yet, in this review, few studies focused on fathers of
adolescents with disabilities. As such, we know very little about the experi-
ences of fathers: What positive effects do they experience in raising their
children? Negative effects? What types of support do fathers need? Especially
given the potentially different role of fathers (e.g., economic providers)
versus mothers (e.g., direct caregivers; Essex, Seltzer, & Krauss, 1993), future
research should consider their roles. It is important for studies to examine if
these roles still hold true, or if there is more sharing of roles as work
commitments are more varied than in the past. This also raises another
avenue for future research—how to engage fathers in services and interven-
tions and how might programs look different for fathers versus mothers.
Future research should also include siblings of adolescents with disabil-
ities. In this review, five studies included siblings. Yet siblings have the
longest lasting familial relationship (Cicirelli, 1995). When a family member
has a disability, siblings are often turned to for caregiving responsibilities
(Burke, Taylor, Urbano, & Hodapp, 2012; Orsmond & Seltzer, 2000). Given
that adolescence is a key time for transition, siblings of individuals with
disabilities, like their parents, may begin to think about their futures, includ-
ing caregiving roles. As such, future research should include siblings of
Need for research about culturally and socioeconomically diverse families

Future research needs to include more culturally and socioeconomically diverse
families to discern the potential differential effects of caring for an adolescent
with a disability. Of the studies in our review that reported race/ethnicity, 85% of
the samples were primarily White. Further, almost all of the studies used
convenience samples that were more likely to include participants with higher
incomes. Yet results from primarily White, higher income samples may not
generalize to culturally and socioeconomically diverse families. Latina mothers
of individuals with intellectual and developmental disabilities, for example, are
often in poor physical health and have high rates of depression (Blacher, Lopez,
Shapiro, & Fusco, 1997). Additionally, relative to higher-income families, par-
ents of individuals with disabilities with lower household incomes have poorer
well-being (Abbeduto et al., 2004; Mitchell & Hauser-Cram, 2008). Given the
importance of culture and fiscal resources with respect to family caregiving and
support, future research needs to include more representative samples, including
those with greater cultural and socioeconomic diversity.
Need for research about positive impacts

There is some research to suggest that, relative to parents of adolescents who
are typically developing, parents of adolescents with disabilities may enjoy
more cohesive relationships and have fewer family conflicts (Jandasek et al.,
2009). Yet most studies identified for our review focused on the negative
effects of having a family member with a disability. Such a preponderance of
studies focused on family stress and distress may reflect an outdated frame-
work. Previously, it was thought that having a child with a disability was a
negative event. Parents would need to mourn losing a potentially “perfect”
infant to having a child with a disability (Solnit & Stark, 1961). Recently,
however, the disability field has started moving toward a positive psychology
framework. According to this perspective, the emphasis shifts from solely
negative to also recognize the ways that family members benefit from having
a child with a disability in the family (Dykens, 2005). From this literature
review, it seems that most research has not yet made this shift and, subse-
quently, many positive effects of having an adolescent child with a disability
remain unknown. Perhaps an updated conceptual framework that includes
both the challenges of raising an adolescent with a disability but also the ways
that families can benefit could help drive future research to empirically
investigate positive outcomes.
Need for research about family support interventions

Findings from this review suggest that families (particularly parents) may be
experiencing high levels of stress and/or other mental health problems. Not
only is the consideration of family distress important because it can lead to
the alleviation of suffering for parents and other family members, but also
because it could prolong parents’ ability to care for their offspring. That is,
research suggests that parenting an individual with a disability leads to
accelerated cellular aging (Epel et al., 2004), which in turn could result in
parents’ needing to relinquish the primary caregiving role before they are
ready. Further, studies of adolescents and adults with ASD have found that
more positive and less critical home environments lead to behavioral
improvements for the person with the disability (Greenberg, Seltzer, Hong,
& Orsmond, 2006; Smith, Greenberg, Seltzer, & Hong, 2008). Thus, there are
multiple reasons to develop and implement family support interventions.
Yet our review found only three studies focused on interventions and
supports specifically for families of adolescents with disabilities. In this
review, we identified one descriptive study that examined the effect of

support on the family (Smith et al., 2012) and two studies that tested
interventions focused on parents (Magaña et al., 2015; Smith et al., 2012).
Most of the studies examined interventions wherein the parent or sibling was
an interventionist and the overarching purpose of the intervention was
directed to the adolescent with a disability.
Given the difficulties families can face in raising a son or daughter with a
disability, more research is needed to examine interventions that directly sup-
port the family of the individual with a disability. Because parents of individuals
with disabilities tend to struggle to advocate for their son/daughter within the
adult service delivery system (e.g., Cooney, 2002; Timmon et al., 2004), inter-
ventions designed to help parents advocate might be particularly promising. For
example, Balcazar, Keys, Bertram, and Rizzo (1996) conducted a study of
Partners in Policymaking—an advocacy program designed to help parents of
individuals with disabilities conduct individual and legislative advocacy. Five
months after Partners in Policymaking ended, participants reported significantly
greater advocacy activities and outcomes. Additionally, special education advo-
cacy trainings exist to help parents navigate and advocate within the special
education system (Burke, 2013). Future research may consider developing and
testing an advocacy intervention for parents of adolescents with disabilities.
Other interventions are needed to address the potential negative impacts
of having an adolescent with a disability. Studies in this review found that
parents of adolescents with disabilities may experience worse well-being
including greater stress, worse health, greater depression, and increased
anxiety (e.g., Hartley et al., 2012; Seltzer et al., 2010). Thus, it seems that
interventions to target parental well-being are needed. One such intervention
could be mindfulness-based stress reduction (MBSR)—an evidence-based
practice designed to reduce stress, anxiety, and depression (Chiesa &
Serretti, 2009). In a randomized control trial, parents of children with dis-
abilities who participated in an MBSR program experienced declining stress
and internalizing symptoms (e.g., anxiety, depression) over the course of the
intervention; improvements were maintained up to 6 months after the
program ended (Dykens, Fisher, Taylor, Lambert, & Miodrag, 2014). The
children of the participants in that study averaged age 10.85 years; with
minimal inference, it may be that MBSR is also effective for parents of
Within this vein, one important consideration is determining the unit of
analysis in family support interventions—specifically, should programs intervene
at the level of the family or focus on individuals within a family? Intervening at the
level of the individual—for example, with the mother—might be very helpful in
certain circumstances such as improving mental health or reducing stress. But
given the research on the importance of family climate to the behavioral devel-
opment of individuals with disabilities (Greenberg et al., 2006; Smith et al., 2008),
there are almost certainly benefits to also considering family-wide interventions.

Future family support intervention studies should carefully consider who might be
the most appropriate target, which could include intervening at the level of the
family.
Need for research about the impact of family support on society

Little research has examined the impact of family support on society, espe-
cially with respect to families of adolescents with disabilities. One exception,
however, is a work-life study of mothers of adolescents with developmental
disabilities (Parish, 2006). Using a focus group to understand the experiences
of eight mothers who were juggling work and caregiving, participants
reported considerable obstacles in balancing work and family life. Such
obstacles seemed to stem from the reduction in support services for adoles-
cents with developmental disabilities. According to the participants, supports
and services suddenly declined in adolescence because it was assumed that
their children could care for themselves. However, for many of the adoles-
cents, such independence and self-care was not possible. In addition, the
participants also reported that they struggled to find care for their children
and received little help from their partners. The implications of this study
illustrate that family support for mothers of adolescents is needed for
mothers to be active and contributing members of the work force.
Additionally, traditional societal roles wherein the mother is the primary
caregiver may need to be revisited. By redistributing caregiving responsibil-
ities in the family, partners may help shoulder the caregiving responsibilities.
Research also needs to be conducted to determine whether and to what
extent services are effective in supporting individuals with disabilities and
their families. To date, little research has examined whether formal services
affect individual and family outcomes, and well as which services are most
impactful. At the most basic level, it is important to understand, for instance,
whether vocational rehabilitation services affect individual employment and,
consequently, family quality of life. Another example is mental health ser-
vices, which may have an affect that trickles down to all other areas of life for
adolescents with disabilities (e.g., better academic outcomes, reducing family
distress). To more efficiently design and deliver services, research studies are
needed that test the effectiveness of services in a systematic way.
Implications for family social workers

Family social workers should consider the needs of families of adolescents
with disabilities and not just the adolescents themselves. Findings from this
review suggest that families (particularly parents) may be experiencing high
levels of stress and/or other mental health problems. Further, as interventions
to support these families are underdeveloped, it is likely that families of

individuals with disabilities may not be getting any support directed at
their own experiences. Not only is the consideration of family distress
important because it can lead to the alleviation of suffering for parents and
other family members, but also because it could prolong parents’ ability to
care for their offspring. Thus, there are many potential benefits to addressing
family member quality of life and ensuring that parents and siblings have the
necessary supports to provide high-quality care to their member with a
disability.
Summary
Many individuals with disabilities require significant supports throughout
their lifetimes. Often times, the responsibility for coordinating and carrying
out that support falls to family members—especially as these youth progress
through adolescence into adulthood. Our review suggested that, though we
know quite a bit about the negative ways that families might be affected by
having an adolescent with a disability, we know very little about how best to
support these families. To ameliorate the potential negative impact of caring
for an adolescent with a disability, future research is needed to understand
how to support these families. The results of this comprehensive review have
identified numerous avenues for future research to continue to build the
knowledge base around supports for families of adolescents with disabilities.
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Family support: A review of the literature of

Meghan M. Burke, Kimberly A. Patton & Julie Lounds Taylor

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PRACTICE AND CONCEPTUAL ARTICLE

Family support: A review of the literature of families of

ABSTRACT ARTICLE HISTORY

For all youth and their families, adolescence is a time of tremendous

CONTACT Meghan M. Burke meghanbm@illinois.edu Department of Special Education, University of

as those with an autism spectrum disorder (ASD), the increased social

impairment, attention-deficit/hyperactivity disorder, chronic health condition,

Table 1. Study characteristics.

with ID provided interview)

Parents navigating the transition process and service delivery system

However, parents were less involved in finding residential placements.

Advocacy. For their adolescent family members with disabilities, parents

Parents spending time with their adolescent children with disabilities.

Parents helping their adolescents with disabilities overcome stress. Parents

Siblings supporting their adolescent brothers and sisters with disabilities.

Summary of Question 1. With respect to supporting adolescent children

Question 2. The impact on families of providing support to adolescents

Negative impacts for parents of adolescents with disabilities

and externalizing problems was supported by the results of a study by

Less life satisfaction. Magill-Evans, Darrah, Pain, Adkins, and Kratochvil

Greater anxiety and depression. Parents of adolescents with disabilities may

greater behavior problems in the adolescent with a disability, and if the

Greater stress. Studies of parents of children with disabilities consistently

Greater pessimism and conflict. Parents of adolescents with certain types

Greater anger. Smith, Seltzer, Tager-Flusberg, Greenberg, and Carter

Worse psychological well-being. Carr and Lord (2013) conducted a long-

Positive impacts for parents of adolescents with disabilities

Impacts for siblings of adolescents with disabilities

Negative impact: Greater behavior problems. Lardieri, Blacher, and

siblings of individuals with behavior problems but without learning dis-

Question 3. Assistance for families of adolescents with disabilities

Caregiver support interventions

Family participation in interventions for adolescents

a community service provider after completing the training. Results indicated

Overview of Research Questions 1, 2, and 3

Family members provide supports to their adolescents with disabilities in a

Need for longitudinal research

Need for research about other family members

mothers makes sense as mothers tend to be the primary caregivers (Hartley,

Need for research about culturally and socioeconomically diverse families

Need for research about positive impacts

Need for research about family support interventions

review, we identified one descriptive study that examined the effect of

there are almost certainly benefits to also considering family-wide interventions.

Need for research about the impact of family support on society

Implications for family social workers

to support these families are underdeveloped, it is likely that families of

emotional disturbances. Journal of Abnormal Child Psychology, 20, 83–102. doi:10.1007/

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