Effectiveness of Interventions for Children With Autism Spectrum Disorder and Their Parents: A Systematic Review of Family Outcomes Heather Miller Kuhaneck, Stephanie Madonna, Audrey Novak, Emily Pearson MeSH TERMS adaptation, psychological autistic disorder family health occupational therapy self efficacy stress, psychological Heather Miller Kuhaneck, PhD, OTR/L, FAOTA, is Assistant Professor, Department of Occupational Therapy, Sacred Heart University, Fairfield, CT; [email protected]Stephanie Madonna, MS, OTR/L, is Occupational Therapist, Hand Therapy Associates, PC, Southington, CT. Audrey Novak, MS, OTR/L, is Occupational Therapist, Masonicare Health Center, Wallingford, CT. Emily Pearson, MS, OTR/L, is Occupational Therapist, Capitol Region Education Council, Hartford, CT. This systematic review examined the literature published from January 2006 to April 2013 related to the effectiveness of occupational therapy interventions for children with autism spectrum disorder (ASD) and their parents to improve parental stress and self-efficacy, coping, and resilience and family participation in daily life and routines. From the 4,457 abstracts, 34 articles were selected that matched the inclusion criteria. The results were mixed and somewhat inconclusive because this body of literature is in its infancy. Studies of children with ASD do not routinely measure parental and family outcomes. Recommendations include an emphasis on family measures other than parental stress and a greater focus on measures of parental and family functioning in all future studies of pediatric interventions to more fully understand the impact of interventions in a wider context. Kuhaneck, H. M., Madonna, S., Novak, A., & Pearson, E. (2015). Effectiveness of interventions for children with autism spectrum disorder and their parents: A systematic review of family outcomes. American Journal of Occupational Therapy, 69, 6905180040. http://dx.doi.org/10.5014/ajot.2015.017855 F amilies are the most important and most enduring force in a child’s development (Schor, 2003). Families provide the foundation for children to learn, develop typically, engage in occupations, and participate in routines (Primeau, 2000; Schor, 2003; Segal, 2004; Stewart-Brown & Schrader- McMillan, 2011). “Children’s outcomes—their physical and emotional health and their cognitive and social functioning—are strongly influenced by how well their families function” (Schor, 2003, p. 1542). Family-centered care is therefore often considered best practice in the health care arena (Kuo et al., 2012), and an important aspect of clinical practice to promote positive child outcomes for children with special needs should be interventions to support and promote family wellness and functioning (Dunst, Hamby, & Brookfield, 2007). These interventions may be a particularly critical aspect of practice when working with families of children with autism spectrum disorder (ASD) be- cause these children demonstrate a variety of symptoms that can have a con- siderable impact on the family. A diagnosis of ASD is made when reciprocal social communication and social interaction skills are impaired and restricted or repetitive behaviors and interests are present. These features, according to the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, must become present during early development and result in a significant impairment in social, oc- cupational, and other areas of functioning (American Psychiatric Association, 2013). Children with ASD demonstrate communication deficits and inappropriate social engagement as well as cognitive and adaptive impairments (Davis & Carter, 2014; Kim, Paul, Tager-Flushberg, & Lord, 2014). Their developmental skills The American Journal of Occupational Therapy 6905180040p1 Downloaded From: http://ajot.aota.org/ on 03/03/2016 Terms of Use: http://AOTA.org/terms
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Effectiveness of Interventions for Children With AutismSpectrum Disorder and Their Parents: A SystematicReview of Family Outcomes
Heather Miller Kuhaneck, Stephanie Madonna, Audrey Novak,
Emily Pearson
MeSH TERMS
� adaptation, psychological
� autistic disorder
� family health
� occupational therapy
� self efficacy
� stress, psychological
Heather Miller Kuhaneck, PhD, OTR/L, FAOTA, is
Assistant Professor, Department of Occupational Therapy,
Greenberg, & Mailick, 2012), and 3 represent Level IV
evidence (Binnendyk & Lucyshyn, 2008; Singh et al., 2006;
Steiner, 2011). These articles were published in 22 different
journals, with the Journal of Autism and DevelopmentalDisorders (4 articles), Research in Autism Spectrum Disorders(4 articles), and Journal of Positive Behavior Interventions(3 articles) represented most frequently. Intervention and
study length varied considerably; the shortest was just 3 wk,and the longest was 25 hr/wk for 2 yr.
Population
In 16 of the articles, the caregivers of children with ASD
were the study participants. The children with ASD were
the study participants in 8 articles, and 9 focused on both
the caregiver and the children. The last article studied
teams composed of the child, parents, and the pro-
fessionals working with the child, including occupational
therapists. As is typical of ASD, the majority of child
participants were male, and they ranged in age from 1 to
17 yr. The majority of caregivers were mothers. Nine
studies (27%) occurred outside the United States, 4 in
Australia and 1 each in Canada, Germany, Greece, Hong
Kong, and Japan.
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cluded in these studies included discrete trial training,
Figure 2. Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) flow diagram of studies included in review.Format developed by Moher, Liberati, Tetzlaff, & Altman, 2009.
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Early Intensive Behavioral Intervention, incidental teaching,
Picture Exchange Communication System, pivotal response
training, and Treatment and Education of Autistic and
related CommunicationHandicapped Children (TEACCH).
Cognitive–behavioral therapy was used as an intervention in
2 studies.
Parent Education and Coaching inCenter-Based Programs
The strength of evidence for parent education and
coaching provided in a center was moderate for improving
general efficacy and confidence (Okuno et al., 2011; Pillay
et al., 2011; Reynolds et al., 2011) and task-specific ef-
ficacy (Raj & Salagame, 2010). This group included 3
Level III studies and 1 Level I study.
The strength of the evidence for the ability of these
interventions to reduce stress and improve family coping
and resiliency when provided in a center was mixed. Five
Level I studies, 2 Level II studies, and 3 Level III studies
found either decreased stress (RUPP Autism Network,
2007; Samadi et al., 2013; Schultz et al., 2011; Wong &
Kwan, 2010) or no change in stress (Fava et al., 2011;
McConachie & Diggle, 2007; Reed et al., 2009; Smith
et al., 2012; Solomon et al., 2008; Tonge et al., 2006).
One Level III study documented that family atmosphere
improved (Probst & Glen, 2011).
Parent Education and Coaching in the Home and inHome and Center Combined
The strength of evidence for parent education and
coaching provided in the home or the home and a center
combined was limited. This group included 1 Level I
study, 1 Level II study, and 3 Level III studies and resulted
in positive outcomes of improved confidence (Nefdt et al.,
2010) and improved efficacy only for those parents with
initial low efficacy (Keen et al., 2010).
The strength of the evidence for parent coaching in
the home or home and center to reduce stress and improve
family coping and resiliency was also limited. One Level I,
1 Level II, 2 Level III, and 1 Level IV studies were included
in this category. Of those, 4 documented decreased stress
(Bendixen et al., 2011; Dunn et al., 2012; Keen et al.,
2010; Schertz et al., 2012), and 1 documented improved
quality of life (Binnendyk & Lucyshyn, 2008). The evidence
that parent coaching interventions can improve family par-
ticipation in daily life routines was insufficient; it was
documented in only 1 Level III study (Dunn et al., 2012).
Behavioral Interventions in Center-Based Programs
Five Level I studies suggested moderate to strong evi-
dence that interventions provided in a center can improve
confidence (Roberts et al., 2011; Scarpa & Reyes, 2011;
Sofronoff et al., 2007), improve parental efficacy at 6-mo
follow-up (Whittingham et al., 2009a), and improve pa-
rental attributions (Whittingham et al., 2009b). Mixed
evidence exists related to the impact of center-based be-
havioral interventions on parental stress, coping, and
quality of life. This category included 1 Level I study, 2
Level II studies, 1 Level III study, and 1 Level IV study.
One study demonstrated decreased stress (Rickards et al.,
2009), and another found decreased stress in the control
group but no change in the treatment group (Fava et al.,
2011). One found improved well-being (Roberts &
Pickering, 2010), and another documented increased pa-
ternal depression (Remington et al., 2007).
Behavioral Interventions in the Home
Two Level I studies suggested moderately strong evidence
that behavioral interventions in the home had no effect
on family outcomes related to self-efficacy, confidence, or
perceived competence (Rickards et al., 2007; Roberts
et al., 2011). In relation to these interventions and pa-
rental stress, coping, and quality of life, the evidence is
mixed. One study documented decreased stress (Rickards
et al., 2009), and others found no changes (Rickards
et al., 2007; Welterlin et al., 2012). In 1 study, paternal
depression increased (Remington et al., 2007).
Interventions Focused on Relaxation, Mindfulness,and Strengths
A few studies examining parent outcomes used inter-
ventions that did not neatly fall into the behavioral or
parent training models. These interventions may improve
stress (Gika et al., 2012); satisfaction with parenting
(Singh et al., 2006); or parental interaction, affect, and
physical affection (Steiner, 2011), but at this time the
evidence is insufficient.
Discussion
The results of this systematic review suggest a body of
literature in its infancy. Although ample evidence has
documented the excessive stress of parents of children with
ASD (Karst & Van Hecke, 2012; Montes & Halterman,
2007; Mugno et al., 2007; Schieve et al., 2007), this
review found limited evidence that interventions can
improve parental stress levels and some evidence that
interventions can in fact increase it or lead to greater
levels of depression. However, the evidence is somewhat
stronger that center-based interventions can at least im-
prove parental confidence, competence, and feelings of
self-efficacy. Given the inverse relationship found between
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stress and self-efficacy (Giallo et al., 2013; Raikes &
Thompson, 2005), improving self-efficacy may be one
method of effectively reducing stress over time (Jones &
Prinz, 2005). The somewhat stronger evidence for center-
based programs may reflect the greater intensity of the
interventions provided in the center as opposed to the
home, or it may reflect the greater emphasis on research in
the center-based programs, with higher levels of evidence
available generally for center-based programs than for
home-based ones, perhaps because of greater availability of
resources for research. Despite the lack of strong evidence
at this time, this review of the literature found slight im-
provements in comparison with similar earlier reviews of
the literature (Brookman-Frazee et al., 2006; Schultz et al.,
2011). The current systematic review contains literature of
a higher level of evidence, with more studies that included
measures of parental competence, standardized assessment
tools, and examinations of fidelity.
Limitations
This review was limited to articles published in English
from January 2006 to April 2013. Systematic reviews are
also limited by the quality of the evidence being reviewed,
based on the design and methods of the individual studies.
The risk of bias in this group of literature as a whole is high
(see Table 1). Issues included small sample sizes and
limited descriptions of the psychometric properties of
outcome measures. In addition, many of the studies in-
cluded concurrent interventions; therefore, separating the
effects of the interventions can be difficult. Many of the
articles reviewed had multiple additional issues, including
outcomes reported primarily via parent-report measures,
limited measures of fidelity to intervention, and limited
measures or reports of attendance levels and participation
of participants. Intervention length varied greatly be-
tween studies, making comparison difficult. In addition,
the samples were frequently nonrepresentative, mostly
White, and with higher socioeconomic status and edu-
cational levels, and the studies as a whole were skewed
almost completely to the voice of mothers. Many (27%)
were completed outside the United States, and different
cultures may have different family expectations. Most
articles provided limited information on the child’s
characteristics, but the included children were mostly of
younger ages.
Implications for Future Research
Given the focus on routines in the Occupational TherapyPractice Framework: Domain and Process (3rd ed.; AOTA,
2014) and the importance of family-centered care,
a major gap in the literature is a lack of evidence that
occupational therapy can improve family function,
participation in family routines, and family engage-
ment. There is a huge need for more research in this
area. Researchers in occupational therapy should con-
sider including parental and family outcome measures
in intervention studies completed with children. Future
studies should investigate the length of intervention
necessary to document changes in family outcomes,
because the variation in the studies reviewed was
enormous. In addition, one article found evidence
suggesting that perhaps interventions for families need
a lengthy time period to have an impact (Dunn et al.,
2012).
There is a need for better measures for families as well.
None of the articles specifically explored the impact of
interventions on coping or resiliency; instead, the focus
was most often on reducing stress. The most frequently
used measure, the Parenting Stress Index, may not be the
best measure of family functioning and is not meant to be
a measure of participation in family routines or engage-
ment in family activities. Perhaps more important, re-
search on family functioning should focus on positive
outcomes such as coping and resiliency, hopefulness, or
even quality of life as opposed to merely reducing parental
stress.
Two intriguing avenues for more rigorous study in the
future were found. Parents reported a benefit of parent-to-
parent coaching and interaction in qualitative comments
and via questionnaires (Pillay et al., 2011; Probst & Glen,
2011; Roberts & Pickering, 2010; Sofronoff et al., 2007).
Another article suggested that merely changing the
therapists’ verbalizations to focus on a child’s strengths
rather than his or her deficits may have an impact on
family interaction (Steiner, 2011). These studies are im-
portant to replicate with more rigorous methods because
they use intervention strategies that are low cost, are fairly
easy to implement, and resonate with the philosophy of
occupational therapy and family-centered care.
Implications for OccupationalTherapy Practice
The results of this review have the following implications
for occupational therapy practice:
• Family-centered care has been widely supported as
a critical part of treating children with disabilities
(Dempsey, Keen, Pennell, O’Reilly, & Neilands,
2009).
• The pervasive nature of ASD has a significant impact
on daily life for both the child and the family; as a re-
sult, it is critical that providers consider the needs of the
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entire family (Hodgetts, Nicholas, Zwaigenbaum, &
McConnell, 2013).
• Occupational therapists support family-centered care
because they recognize the interrelationship of the
client’s skills, performance patterns, and environ-
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