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,

Sacred Heart University, Fairfield, CT;

kuhaneckh@sacredheart.edu

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

Families 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

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are often inconsistent, their responses to intervention vary

(Brookman-Frazee, Stahmer, Baker-Ericzen, & Tsai,

2006), and they engage in self-injurious, aggressive, or

rigid behaviors that may influence the entire family’s

functioning (Meadan, Halle, & Ebata, 2010). Children

with ASD frequently demonstrate multiple occupational

performance deficits related to ASD symptoms that could

have an impact on family routines and well-being.

Occupational Performance Deficits ofChildren With ASD and Family Impact

Children with ASD have difficulties in multiple areas

of occupation, including activities of daily living, sleep,

education, and play. Delayed performance of self-care has

been reported (Jasmin et al., 2009), and parents have

noted difficulties with feeding and toileting (Ahearn,

Castine, Nault, & Green, 2001; McLennan, Huculak, &

Sheehan, 2008). Parents also report difficulties with oral

care and dental visits (Stein, Polido, & Cermak, 2012).

Children with ASD experience feeding difficulties that are

less transient than those of typically developing children

(Provost, Crowe, Osbourn, McClain, & Skipper, 2010).

Specifically, they resist sitting at the table during mealtime,

eat less variety of foods, and have more difficulty eating in

new environments, for example, a family picnic or a res-

taurant (Provost et al., 2010). Children with ASD may eat

very limited diets or may be placed on special diets because

of food allergies or parental desire (Lockner, Crowe, &

Skipper, 2008; Millward, Ferriter, Calver, & Connell-

Jones, 2004; Nadon, Feldman, Dunn, & Gisel, 2011).

Sleep routines may also be difficult for the family.

Children with ASD have difficulty falling and staying

asleep and frequently wake early (Park et al., 2012;

Richdale & Schreck, 2009; Sivertsen, Posserud, Gillberg,

Lundervold, & Hysing, 2012). Mothers tend to provide

nighttime care when children have sleep difficulty, which

interrupts maternal sleep and affects maternal health as

well (Bourke-Taylor, Pallant, Law, & Howie, 2013).

Sleep difficulties persist into adolescence and have a long-

term impact on child and caretaker function (Goldman,

Richdale, Clemons, & Malow, 2012).

Educational performance is often an issue for children

with ASD, many of whom are placed in the special ed-

ucation system. Parents may have difficulty determining

the appropriate educational placement for their child; even

children with typical cognitive ability may demonstrate

academic achievement that does not match their intellect

as a result of atypical behaviors and social difficulties

(Estes, Rivera, Bryan, Cali, & Dawson, 2011). Last, in-

dependent play, sibling play, and peer play also are

commonly difficult for children with ASD (Mastrangelo,

2009; Mavropoulou, Papadopoulou, & Kakana, 2011;

Oppenheim-Leaf, Leaf, Dozier, Sheldon, & Sherman, 2012).

The extensive and pervasive nature of the difficulties

experienced by many children with ASD leads to sub-

stantial parental stress.

Impact on Parental Stress

The literature has indicated a high incidence of reported

stress among parents and families of children with ASD

compared with parents of children with other de-

velopmental disabilities and parents of typically de-

veloping children (Hayes & Watson, 2013; Karst & Van

Hecke, 2012; Montes & Halterman, 2007; Mugno,

Ruta, D’Arrigo, & Mazzone, 2007; Schieve, Blumberg,

Rice, Visser, & Boyle, 2007). Given the performance

difficulties described earlier, parenting a child with ASD

is especially difficult and stressful. In addition, the

lengthy diagnostic process, lack of knowledge about the

diagnosis, and uncertainty regarding prognosis may in-

crease the stress experienced by parents of children with

ASD (Dale, Jahoda, & Knott, 2006; Moh & Magiati,

2012). Other stressors reported by families include fi-

nancial hardship resulting from the cost of intervention

and parental absence from work, challenges around

traveling to multiple medical appointments, and prob-

lems obtaining respite care (Harper, Taylor Dyches,

Harper, Olsen Roper, & South, 2013; Montes &

Halterman, 2008; Zablotsky, Kalb, Freedman, Vasa, &

Stuart, 2014). These difficulties, as well as the prospect of

lifelong or lengthy care from family, have a measurable

impact on the stress felt by families of children with ASD

(Karst & Van Hecke, 2012) and often create concerns for

the future (Donaldson, Elder, Self, & Christie, 2011).

Impact on Family Routines

Along with the financial and access-to-care issues, stressors

associated with raising a child with ASD include the need

to have rigid or structured routines, which can restrict the

family’s lifestyle and create social isolation (Bishop,

Richler, Cain, & Lord, 2007; Davis & Carter, 2008;

DeGrace, 2004; Larson, 2006; Schieve et al., 2007). In-

cluding the child with ASD in activities both in and

outside of the home can be stressful or chaotic (Bagby,

Dickie, & Baranek, 2012; Marquenie, Rodger, Mangohig,

& Cronin, 2011; Schaaf, Toth-Cohen, Johnson, Outten,

& Benevides, 2011). These types of difficulties may hinder

the development of typical family routines.

Family performance patterns are often disrupted or

altered when the home includes a child with ASD. The

child’s rigid behaviors may lead families to adopt highly

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structured routines, but to engage in activities outside the

home, families may need to become extremely flexible

(DeGrace, 2004; Larson, 2006; Schaaf et al., 2011).

Family activities often revolve around the needs of the

child with ASD (DeGrace, 2004; Schaaf et al., 2011),

and mothers report that they frequently engage in ex-

cessive planning to manage their child’s behaviors along

with the needs of the family (Kuhaneck, Burroughs,

Wright, Lemanczyk, & Darragh, 2010). The level of

success in adequately planning, adapting, and balancing

the needs of all family members is likely related to pa-

rents’ belief in their own self-efficacy.

Impact on Self-Efficacy

Self-efficacy is defined as one’s belief about one’s capabilityto perform or ability to succeed (Bandura, 1994, 1997).

Self-efficacy is an important concept to consider in re-

lation to parenting because belief in one’s capability as

a parent may influence motivation, emotional state, and

investment in intervention strategies. Sustaining a posi-

tive sense of parenting self-efficacy can be challenging for

parents of children with ASD (Kuhn & Carter, 2006),

because typical parenting strategies may not work, many

child behaviors are extreme, and continually balancing

the needs of all family members is demanding (DeGrace,

2004; Kuhaneck et al., 2010; Larson, 2006; Schaaf et al.,

2011).

Coping and Resilience

Despite significant stress and difficult family situations,

many parents of children with ASD cope effectively and

demonstrate resilience (Bayat, 2007; Bekhet, Johnson, &

Zauszniewski, 2012; Karst & Van Hecke, 2012; Lai,

Goh, Oei, & Sung, 2015). The literature on resilience

and family coping has suggested an interrelationship

among multiple factors, such as family resources, the

stressful event (having a child with a disability), and the

way in which the family makes meaning of the event

(Bayat, 2007). Reframing, or a parent’s ability to make

the child’s disability mean something important for the

family, allows the family to adapt and balance the de-

mands of raising the child with other family needs. These

reframed perceptions may be one key to family well-being

(Karst & Van Hecke, 2012; Luther, Canham, & Young

Cureton, 2005).

Other specific coping strategies used by parents of

children with ASD include social and family supports,

support groups, religion, and professional supports and

services (Lai et al., 2015; Twoy, Connolly, & Novak,

2007). Certain types of coping strategies are more likely

to have positive outcomes on parental mood, and others

may have a more negative impact (Pottie & Ingram,

2008). Despite the importance of coping skills, however,

few studies have investigated interventions to improve

parental coping specifically in this population, and little is

known about the impact of occupational therapy inter-

ventions on coping skills for parents of children with ASD.

Importance of Interventions for Families

Interventions to improve stress, parental self-efficacy, and

coping skills are a critical aspect of family-centered care for

families of children with ASD (Karst & Van Hecke, 2012).

Strong parental self-efficacy may be particularly important

for parents of children with ASD because self-efficacy has

been found to mediate the relationship between parental

mental health and child problem behaviors (Hastings &

Brown, 2002). Thus, in theory, robust parental self-efficacy

may allow parents to better maintain positive mental health

in the face of difficult child behaviors.

Self-efficacy is influenced by multiple factors and has

the potential to be improved. Studies have demonstrated

that parental fatigue and well-being, contextual family

factors, and child behaviors all affect self-efficacy (Giallo,

Wood, Jellett, & Porter, 2013). In addition, parents’

ability to problem solve and use strategies to manage

child-related challenges may influence their perceptions

of self-efficacy (Foster, Dunn, & Lawson, 2013). In-

creasing parents’ knowledge of ASD may increase self-

efficacy because they are better able to understand the

child’s behaviors and, in turn, infer the child’s underlying

needs and wants (Kuhn & Carter, 2006).

Self-efficacy may influence parental stress. Perceived

parental self-efficacy was found to be directly related to

parenting stress in parents of children with disabilities

(Giallo et al., 2013). Kuhn and Carter (2006) similarly

found that depression and stress were significantly nega-

tively associated with feelings of maternal self-efficacy in

mothers of children with ASD. Given the relationship

between self-efficacy and stress, improving self-efficacy

may decrease parental stress, although it has not been

directly studied.

Coping is believed to affect psychological well-being

through complex mechanisms that are not yet fully un-

derstood (Karst & Van Hecke, 2012; McStay, Trembath,

& Dissanayake, 2015; Pottie & Ingram, 2008). Effective

coping strategies may reduce the risk for parental mental

health issues and may also help manage parental stress

(Zablotsky, Bradshaw, & Stuart, 2013). Therefore, in-

terventions to support coping skills may be essential, but

this idea, too, has yet to be fully studied.

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With the importance of family functioning for child

outcomes (Schor, 2003), the high levels of stress present in

parents of children with ASD, and the strong possibility of

a negative impact on family well-being, it is imperative that

service providers working with these families provide inter-

ventions that help improve family functioning and well-being

(Karst & Van Hecke, 2012). Yet, little information is avail-

able to guide practitioners in providing these interventions.

Gap in the Knowledge Base

As the prevalence of ASD has increased (Autism and

Developmental Disabilities Monitoring Network, 2007,

2014), so has the likelihood that occupational therapy

practitioners will treat children with ASD and work with

their families. Parents value the contribution of occupa-

tional therapy practitioners on the multidisciplinary team

and have reported that occupational therapy is the third

most commonly chosen intervention for people with ASD

(Interactive Autism Network, 2008). Parents must per-

ceive that occupational therapy practitioners bring some-

thing of value to their families, or they would not continue

to choose this service with such great demand. Un-

derstanding of the interventions that best improve family

functioning can increase occupational therapy’s value to

the family as well as, perhaps, improve child outcomes

through greater family-centered care practices (Dunst

et al., 2007; Schor, 2003).

An extensive literature has supported the notion that

parenting children with ASD is difficult and that parents

of children with ASD are stressed and need help. The

literature has suggested that self-efficacy may serve a pro-

tective function for parents. Less well known is what type

of intervention is beneficial for improving parental and

family well-being, coping, and resiliency. To date, few

studies have specifically examined the impact of occupa-

tional therapy interventions on family functioning (Dunn,

Cox, Foster, Mische-Lawson, & Tanquary, 2012), and this

gap in the literature should be filled. More studies outside of

occupational therapy have examined some aspects of family

functioning in relation to specific interventions. Therefore,

the purpose of this systematic review was to examine the

broader literature on the effectiveness of occupational

therapy interventions for people with ASD that improve

parental self-efficacy, stress, family coping and resiliency,

and family participation in daily life and routines.

Method

The systematic review on ASD was supported by the

American Occupational Therapy Association (AOTA) as

part of a larger evidence-based practice project. This

systematic review was completed for the period January

2006–April 2013. The focused question that framed this

review was “What is the evidence for the effectiveness

of interventions within the scope of occupational

therapy practice for people with ASD that improve

parent self-efficacy, family coping and resiliency (in-

cluding spouse and children), and family participation in

daily life and routines?”

The search terms for this review were developed by the

methodology consultant to the AOTA Evidence-Based

Practice (EBP) Project and AOTA staff, in consultation

with the review authors of each question, and by an ad-

visory group. The search terms were developed not only to

capture pertinent articles but also to make sure that the

terms relevant to the specific thesaurus of each database

were included. Figure 1 shows the search strategy related

to population (ASD) and types of interventions included

in the systematic review. A medical research librarian with

experience in completing systematic review searches

conducted all searches and confirmed and improved the

search strategies. Databases and sites searched included

MEDLINE, PsycINFO, CINAHL, ERIC, and OTseeker.

In addition, consolidated information sources such as the

Cochrane Database of Systematic Reviews were included in

the search. Moreover, reference lists from articles included

in the systematic reviews were examined for potential ar-

ticles, and selected journals were hand searched to ensure

that all appropriate articles were included.

Figure 1. Search strategy.

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The review was limited to peer-reviewed scientific

literature published in English. The intervention

approaches examined were within the scope of practice

of occupational therapy. The literature included in the

review was published between January 2006 and April

2013 and included study participants with ASD. The

review excluded data from presentations, conference

proceedings, non–peer-reviewed research literature, dis-

sertations, and theses. Studies included in the review

were Level I, II, and III evidence. Level IV and V evi-

dence was included only when higher level evidence on

a given topic was not found. In the levels of evidence

used by AOTA, Level I includes systematic reviews of

the literature, meta-analyses, and randomized controlled

trials. Level II studies are those in which assignment to

a treatment or a control group was not randomized

(cohort study). Level III studies do not have a control

group. Level IV studies use a single-case experimental

design, and Level V studies are case reports and expert

opinion such as narrative literature reviews and con-

sensus statements. (See Sackett, Rosenberg, Muir-Gray,

Haynes, & Richardson, 1996, for more information on

levels of evidence.)

A total of 4,457 references were included for the

focused question. The consultant to the EBP Project

completed the first step of eliminating references on the

basis of citation and abstract. The systematic reviews

were carried out as academic partnerships in which

academic faculty worked with graduate students to

conduct the reviews. The review team, which consisted

of the four authors, completed the next step of elimi-

nating references on the basis of citations and abstracts.

Two authors independently reviewed abstracts. A third

author settled disagreements when necessary, and any

discrepancies were resolved through discussion within

the review team.

The full-text versions of potential articles were re-

trieved, and the review team determined final inclusion in

the review on the basis of predetermined inclusion and

exclusion criteria. Two people reviewed each article and

rated it according to quality (scientific rigor and lack of

bias) and level of evidence. Each article included was then

abstracted by two authors in an evidence table (see

Supplemental Table 1, available online at http://otjournal.

net; navigate to this article, and click on “Supplemental”)

that provides a summary of the methods and findings of

the articles. AOTA staff and the EBP Project consultant

reviewed the evidence table to ensure quality control. See

Figure 2 for a diagram of the review process. The strength

of evidence was evaluated using the guidelines of the U.S.

Preventive Services Task Force (2013).

Results

The literature search and assessment of eligibility resulted

in a total of 34 articles that met the criteria. For each article

included in the evidence table, the citation, design, level of

evidence, interventions, selected outcome measures, and

selected results related to the research question were ex-

tracted. Sixteen of the articles represent Level I evidence

(McConachie & Diggle, 2007; Nefdt, Koegel, Singer, &

Gerber, 2010; Raj & Salagame, 2010; Rickards, Walstab,

Wright-Rossi, Simpson, & Reddihough, 2007, 2009;

Roberts et al., 2011; Scarpa & Reyes, 2011; Schertz,

Reichow, Tan, Vaiouli, & Yildirim, 2012; Schultz,

Schmidt, & Stichter, 2011; Sofronoff, Attwood,

Hinton, & Levin, 2007; Solomon, Ono, Timmer, &

Goodlin-Jones, 2008; Tonge et al., 2006; Welterlin,

Turner-Brown, Harris, Mesibov, & Delmolino, 2012;

Whittingham, Sofronoff, Sheffield, & Sanders, 2009a,

2009b; Wong & Kwan, 2010), 4 articles represent Level II

evidence (Fava et al., 2011; Keen, Couzens, Muspratt, &

Rodger, 2010; Remington et al., 2007; Samadi, McConkey,

& Kelly, 2013), 11 articles represent Level III evidence

(Bendixen et al., 2011; Dunn et al., 2012; Gika et al.,

2012; Okuno et al., 2011; Pillay, Alderson-Day, Wright,

Williams, & Urwin, 2011; Probst & Glen, 2011; Reed

et al., 2009; Research Units on Pediatric Psychopharma-

cology [RUPP] Autism Network, 2007; Reynolds, Lynch,

& Litman, 2011; Roberts & Pickering, 2010; Smith,

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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Outcome Measures

The studies used 31 different published assessment tools

for data collection, most of which were parent-report

measures, along with study-specific assessments, Goal

Attainment Scaling, video coding, and interviews. The

tool most commonly used to measure the impact of an

intervention on the family was the Parenting Stress Index

(Abidin, 1995), which was used in 15 of the studies (see

Supplemental Table 1). With such variability in measures,

outcomes were categorized into two primary categories:

(1) parental self-efficacy, confidence, and competence and

(2) parental decreased stress, improved family coping and

resiliency, and quality of life. The second category in-

cluded any measures of parental mental health, such as

level of depression.

Summary of Study Themes

Two primary themes emerged from this review. The first

was intervention type, and the second was location. Inter-

ventions commonly either were based in behaviorism and

often used a parent-mediated intervention focus with the

child or followed a parent training–coaching model that

often used a more child-directed approach. These studies as

a whole took place in one of two primary locations: in

a center such as a rehabilitation or educational center or in

the home. Each type of intervention was studied in each

location for various outcomes. Some studies combined

center-based programming and home programs.

The majority of interventions for parents were a form

of parent training, education, or coaching, either alone or

in combination with a parent-mediated intervention di-

rected toward the child. Curriculum content for the parent

training varied and most frequently promoted enhanced

communication and interaction–play between the care-

giver and the child, a decrease in problem behaviors in

the child, and the establishment of effective routines.

Information about ASD and available services was often

included as part of the intervention or as part of parent

exchanges in study-specific parent groups. One study

examined the impact on parents of relaxation techniques,

another examined mindfulness training, and a third ex-

amined comments focused on the child’s strengths rather

than deficits. Overall, evidence for specific occupational

therapy interventions or occupational therapist involvement

was limited.

Autism-specific behavioral intervention methods in-

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-

ment, including the family and home environment

(Rodger, Ashburner, Cartmill, & Bourke-Taylor,

2010).

Table 1. Risk of Bias

Citation

RandomSequenceGeneration

(Selection Bias)

AllocationConcealment

(Selection Bias)

Blinding ofParticipants

and Personnel(Performance

Bias)

Blinding ofOutcome Assessment

(Detection Bias)(Patient-Reported

Outcomes)

IncompleteOutcome Data(Attrition Bias)(Short-Term[2–6 wk])

IncompleteOutcome Data(Attrition Bias)(Long-Term[>6 wk])

SelectiveReporting(Reporting

Bias)

Bendixen et al. (2011) 2 2 2 2 1 1 1

Binnendyk & Lucyshyn (2008) 2 2 2 2 1 1 1

Dunn, Cox, Foster,Mische-Lawson, &Tanquary (2012)

2 2 2 2 1 1 1

Fava et al. (2011) 2 2 2 2 1 1 1

Gika et al. (2012) 2 2 2 2 1 1 1

Keen, Couzens, Muspratt, &Rodger (2010)

2 2 ? 2 ? 1

McConachie & Diggle (2007) ? ? ? ? 1 1 21

Nefdt, Koegel, Singer, &Gerber (2010)

2 2 2 2 2 N/A ?

Okuno et al. (2011) 2 2 2 2 2 N/A 2

Pillay, Alderson-Day, Wright,Williams, & Urwin (2011)

2 2 2 2 2 2 1

Probst & Glen (2011) 2 2 2 2 ? ? ?

Raj & Salagame (2010) 2 ? ? 2 1 1 1

Reed et al. (2009) 2 2 2 2 2 1

Remington et al. (2007) 2 2 ? 1/2 ? ? ?

Research Units on PediatricPsychopharmacologyAutism Network (2007)

2 2 ? 2 ? ? 1

Reynolds, Lynch, & Litman (2011) 2 2 2 2 2 2 1

Rickards, Walstab, Wright-Rossi,Simpson, & Reddihough (2007)

1 ? 2 2 1

Rickards, Walstab, Wright-Rossi,Simpson, & Reddihough (2009)

1 ? 2 2 2 2 1

Roberts & Pickering (2010) 2 2 2 2 1 1 1

Roberts et al. (2011) 1 ? 2 2 2 2 1

Samadi, McConkey, & Kelly (2013) 2 2 2 2 2 2 1

Scarpa & Reyes (2011) 1 2 2 2 ? ? 1

Schertz, Reichow, Tan, Vaiouli, &Yildirim (2012)

? ? ? ? ? ?

Schultz, Schmidt, & Stichter (2011) ? ? ? ? ? ? 2

Singh et al. (2006) 2 2 2 2 1 1 1

Smith, Greenberg, & Mailick (2012) 2 2 2 2 1 1 ?

Sofronoff, Attwood, Hinton, &Levin (2007)

1 2 ? 2 2 1

Solomon, Ono, Timmer, &Goodlin-Jones (2008)

1 2 2 2 1 1 1

Steiner (2011) 2 2 2 1 1 N/A 1

Tonge et al. (2006) 1 1 ? 2 ? ? 1

Welterlin, Turner-Brown, Harris,Mesibov, & Delmolino (2012)

? ? 2 2 1 1 1

Whittingham, Sofronoff, Sheffield, &Sanders (2009a)

1 2 ? 2 ? ? 1

Whittingham, Sofronoff,Sheffield, & Sanders (2009b)

? ? 2 2 ? N/A 1

Wong & Kwan (2010) 1 ? 1 2 1 1 1

Note. 1 5 low risk of bias; ? 5 unclear risk of bias; 2 5 high risk of bias; N/A 5 not applicable.

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• Family-centered care for children with ASD must also

address the well-being of parents, siblings, and other

caretakers by using evidence-based interventions whose

outcomes will benefit the family’s needs.

• Occupational therapists can provide family-centered

intervention through the purposeful consideration of

how individual and family occupations interact with

client factors and performance skills and patterns, tak-

ing into account the context and the environment

(AOTA, 2014).

• Families of children with ASD are stressed, and re-

moving the stressors they face may be impossible.

However, improving parental self-efficacy and coping

and focusing on family resilience are important goals

for occupational therapy interventions. s

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