Content Analysis of Qualitative Research on Children and
Youth With Autism, 1993–2011: Considerations for
Occupational Therapy Services
Yvonne Swinth, George Tomlin, Marge Luthman
MeSH TERMS
adolescent
child development disorders, pervasive
child
occupational therapy
patient care planning
qualitative research
OBJECTIVE. Through a content analysis of qualitative research published 1993–2011, we sought to
determine how qualitative research can inform clinical reasoning among occupational therapy practitioners
to support evidence-based, occupation-focused services for children and youth with autism and their
families.
METHOD. A qualitative literature search of journals inside and outside occupational therapy, including
international journals, yielded 125 articles. We reviewed 110 articles that met inclusion criteria, 79 of which
were coded by four occupational therapists with experience working with families with a child or youth with
autism.
RESULTS. Nineteen content codes were initially derived. Three themes were identified: (1) service challenges for the family, (2) day-to-day experience of autism, and (3) reframing family.
CONCLUSION. This content analysis illustrates how qualitative research may help occupational therapy
practitioners make comprehensive, occupation-based intervention decisions by considering the lived experience of children and youth with autism and their families.
Swinth, Y., Tomlin, G., & Luthman, M. (2015). Content analysis of qualitative research on children and youth with autism,
1993–2011: Considerations for occupational therapy services. American Journal of Occupational Therapy, 69,
6905185030. http://dx.doi.org/10.5014/ajot.2015.017970
Yvonne Swinth, PhD, OTR/L, FAOTA, is Professor
and Director, School of Occupational Therapy, University
of Puget Sound, Tacoma, WA; yswinth@pugetsound.edu
George Tomlin, PhD, OTR/L, is Professor, School of
Occupational Therapy, University of Puget Sound,
Tacoma, WA.
Marge Luthman, MS, OT/L, is Clinical Educator and
Senior Staff Therapist, Children’s Therapy Center, Tacoma,
WA.
The American Journal of Occupational Therapy
C
hildren and youth with autism spectrum disorder (ASD) and their families
are becoming one of the most commonly served populations by pediatric
occupational therapy practitioners. Recent data from the Centers for Disease
Control and Prevention (2014) indicate that the prevalence of ASD in children
is about 1 in 68. Thus, it is important that practitioners use the most complete
evidence to inform their decision making when working with this population.
In 2014, the American Occupational Therapy Association (AOTA) published the third edition of the Occupational Therapy Practice Framework: Domain
and Process. This document identifies the domain and process of occupational
therapy by summarizing “interrelated constructs” (AOTA, 2014, p. S1). These
constructs are “linked inextricably in a transactional relationship” (p. S4) and
promote occupation-based practice by stressing the importance of considering
all areas of occupation through the occupational therapy process of evaluation,
intervention, and outcomes. According to the Framework, the client is not
necessarily limited to the person with the disability and may include the family
and other stakeholders, organizations, and populations.
Concurrent with the development and implementation of the Framework,
evidence-based practice, or use of research to inform practice, has emerged as
a critical responsibility of occupational therapy practitioners. Evidence-based
practice shapes and informs a practitioner’s clinical reasoning and may influence
which services for children and youth with autism are reimbursed. The Centennial
6905185030p1
Vision of the occupational therapy profession explicitly
states, “We envision that occupational therapy is [an]
evidence-based profession with a globally connected and
diverse workforce meeting society’s occupational needs”
(AOTA, 2007, p. 613). Together, the Framework and the
Centennial Vision are being used to shape research priorities
and discussions about and implementation of occupational
therapy services.
Given these priorities, it is important that practitioners
have available to them evidence that supports clinical decision making based on both occupational needs and client
factors. This two-pronged approach to decision making has
been discussed in the literature as a top-down versus bottomup approach to services (Coster, 1998; Gutman, Mortera,
Hinojosa, & Kramer, 2007). An evidence review by CaseSmith and Arbesman (2008) on occupational therapy
services and autism informed the bottom-up, or client
factors, approach but did not provide insight into the
occupation-based needs of this population. Evidence on an
occupation-based, or top-down, approach provided by qualitative studies may be valuable to decision making in occupational therapy practice (Coster, Gillette, Law, Lieberman,
& Scheer, 2004), particularly with children and youth
with autism because of the importance of participation in
context, including physical and social environments, and
the intense impact of the diagnosis on the functioning
and quality of life of the family. Understanding the child’s
and the family’s lived experience of the diagnosis, the intervention, and subsequent outcomes is of critical importance for the success of occupational therapy services.
During the process of providing occupational therapy
services, practitioners use many types of clinical reasoning
(Schell & Schell, 2008). Among them are procedural
reasoning, which addresses the accuracy of evaluation and
the effectiveness of intervention procedures; interactive reasoning, which concerns the establishment and maintenance
of an effective therapeutic relationship with the client; and
conditional reasoning, concerned with identifying feasible
outcomes for the client in the client’s life world (Fleming,
1991). Historically, quantitative studies have informed
procedural reasoning (Tomlin, 2008), whereas qualitative
studies have informed interactive and conditional reasoning
by providing knowledge of the insider perspective and valued occupational outcomes to enhance practitioners’ clinical
reasoning and empathy.
In their review of the quantitative evidence for the
effectiveness of intervention for people with autism,
Case-Smith and Arbesman (2008) found six approaches
worthy of attention. These approaches focused predominantly on changing the person with the diagnosis
by addressing client factors (i.e., a bottom-up approach)
6905185030p2
to affect impairments directly. The six approaches are
(1) sensory-based interventions, (2) relationship-based
interventions, (3) developmental skill-based programs,
(4) social cognitive skill training, (5) parent-directed or
-mediated approaches, and (6) intensive behavioral
intervention. Interventions that focus on adapting the
sensory, physical, or social environment, which are
harder to study through randomized controlled trials
because of the uniqueness of each family’s situation as
well as ethical challenges, did not appear prominently
in the review. Nor was evidence apparent addressing the
most effective means of establishing and maintaining
a therapeutic relationship between the practitioner and
the family. Additionally, information regarding direct
links to the occupation-based desires of this population
(i.e., a top-down approach) was not explicitly addressed.
Although client factors or impairments are certainly
relevant to intervention for this population, services may
be enhanced and better outcomes achieved if occupational therapy practitioners have clear evidence to help
inform a top-down approach to decision making. A
practitioner who uses evidence to move fluidly between
a bottom-up and top-down perspective may enable
better intervention outcomes. Thus, the gaps in the
quantitative evidence may be directly addressed through
evidence provided by qualitative studies that take into
account the lived experience of children and youth with
ASD and their families.
The purpose of the current content analysis was to
determine how qualitative research published between 1993
and 2011 can inform the clinical reasoning of occupational
therapy practitioners to support evidence-based, occupationally focused services for children and youth with ASD
and their families. Specifically, we sought to answer the
following research question: Given the results of the CaseSmith and Arbesman (2008) meta-analysis, does qualitative
research provide additional insights regarding occupational
therapy service provision for children and youth with autism and their families?
Method
In two independent searches, 125 qualitative articles published between 1993 and 2011 were identified that may help
inform occupational therapy services for children and youth
with autism and their families. An occupational therapy
postprofessional graduate student completed the first search,
and 2 years later, we performed the second search and analyzed the data from both searches.
Databases searched included Medline, CINAHL,
ERIC, PsycINFO, Social Sciences Abstracts, Sociological
September/October 2015, Volume 69, Number 5
Abstracts, Linguistics and Language Behavior Abstracts,
RehabData, and EBSCOHost. These databases contain
peer-reviewed articles, are commonly used by occupational therapy practitioners, and represent the breadth of
professionals working with this population. Consistent
search terms, such as autism, autism spectrum disorders,
children and youth, qualitative research, parent perspectives,
families, coping, and diagnosis, were used for both
searches. Journals both inside and outside occupational
therapy (e.g., psychology, medicine, education, sociology)
were included, as was work across a variety of disciplines
published internationally. The process was deliberately broad
to ensure that all relevant qualitative research was included.
Articles were excluded if they were theoretical in nature,
were not peer reviewed, or used only a quantitative methodology. Articles using a mixed method (i.e., qualitative and
quantitative) were included. Fifteen articles across the two
searches were excluded because they were a duplicate or were
an opinion piece rather than a qualitative study.
Coding occurred as the researchers read the articles. In
both searches, the articles included in the analysis were read 2
times or more. The coding strategy consisted of assigning
a group of symbols to each article. For example, a heart meant
“parenting,” and a dash meant “school.” Symbols were also
assigned for the voices represented in the article; for example,
a filled-in triangle meant “child or adolescent with ASD”
and an open triangle meant “parent.” This system of coding
made it easy to go back to articles for triangulation and
future coding and grouping.
Forty-nine articles from the first search (articles
published January 1993 through April 2008) were
reviewed by a postprofessional master’s student (a Fulbright scholar) who had extensive expertise in pediatrics.
The student initially identified meaning units and then
condensed these meaning units, from which 20 codes
were developed (Table 1; Cavanagh, 1997; Graneheim
& Lundman, 2004).
Seventy-six additional articles were identified during the
second search (published May 2008 through December
2011). Before analysis of these articles, 15 of the articles from
the first search were randomly selected, and the coding was
peer reviewed by the researchers, who are three occupational
therapists with advanced degrees and expertise in pediatrics
and research to ensure consistency (the graduate student who
conducted the first review was not involved in the second
review). These researchers completed an initial review of
the 76 articles; articles that did not meet the inclusion
criteria were excluded. Because the researchers found
a high level of consistency in content with the first review,
they randomly selected 30 of the 76 articles and did indepth coding using the procedure from the first review.
The American Journal of Occupational Therapy
Table 1. Codes Derived From the Content Analysis (N 5 79)
Mentions in Articles
Code
No.
%
Perspectives/experiences/insights of
Child/adolescent with autism
16
20.3
Parents
54
68.4
Professionals (e.g., therapists, teachers)
10
12.7
2
2.5
Activities of daily living/work
8
10.1
Advocatinga
6
7.6
Sibling
Perspectives addressing
Coping strategies
Individuals with autism
6
7.6
Grandparents/siblings
2
2.5
Single family member
27
34.2
Diagnosis
22
27.8
Friendship
2
2.5
Identity/cultural identitya
12
15.2
Intervention/interaction with professionals
28
35.4
Parenting
Play/leisurea
15
4
19.0
5.1
School
12
15.2
Sensory processing
Supporta
Social interaction/competence/skills
6
7.6
11
13.9
15
19.0
a
These codes were added after the initial 49 articles were read and coded.
To increase credibility and trustworthiness, the
researchers met regularly to share coding strategies; identify
themes; and discuss consistencies, inconsistencies, and
unique findings across articles. After several in-depth discussions, the researchers reread and coded the articles
a second time. Four additional codes (identity/cultural
identity, play/leisure, advocating, and support) were added
to the content analysis. As the researchers completed this
further content analysis, they grouped content and codes to
develop initial themes (Graneheim & Lundman, 2004) on
the basis of the participants’ words, commonalities among
codes, and the researchers’ experiences working with children and youth with ASD and their families. Two or
more researchers read each article to control for bias,
and this ongoing peer review resulted in the synthesis
of initial themes and codes into three key conceptual
themes. At this point, the researchers determined that
saturation of the content and themes had occurred,
and the additional 46 articles were not reviewed beyond the initial read.
Individual bias within each article was considered, but
given that the articles were qualitative and represented the
voices of the participants, we did not explicitly address internal bias. However, consistent with qualitative research, we
did consider the trustworthiness of the study design (e.g.,
triangulation, clear method of analysis, member checking)
for each article reviewed.
6905185030p3
Results
The 79 articles reviewed for this study were found in
journals of occupational therapy, special education, child
development, family studies, sociology, and psychology.
The studies were conducted in the United States (n 5 37,
46.8%), the United Kingdom (n 5 19, 24.1%), Australia
(n 5 14, 17.7%), Israel (n 5 3, 3.8%), Canada (n 5 2,
2.5%), Taiwan (n 5 2, 2.5%), China (n 5 1, 1.3%), and
France (n 5 1, 1.3%). Three studies (3.8%) used mixed
methodology, and 8 (10.1%) used the Internet as their
source of data.
The content analysis revealed 19 codes (see Table 1)
representing the breadth and depth of topics addressed.
Articles reviewed contained at least three and as many as
five of these codes. Through reading and rereading the
articles and conducting peer review meetings, the researchers synthesized the codes into conceptual themes.
The conceptual themes identified in the 49 articles of the
first review and 30 articles of the second were (1) service
challenges for the family, (2) day-to-day experience of
autism, and (3) reframing family.
Service Challenges for the Family
Service challenges were a major source of stress for many
families, who found gaining access to services to be
daunting, disruptive, and financially straining (BrookmanFrazee, Baker-Ericzén, Stadnik, & Taylor, 2012; Kuhaneck,
Burroughs, Wright, Lemanczyk, & Darragh, 2010; Osborne
& Reed, 2008): “Overall, parents consistently indicated
that the diagnostic process was confusing and highly
stressful, although many also indicated that they were
relieved once their children were diagnosed with an
ASD” (Brookman-Frazee et al., 2012, pp. 365–366).
Although many participants described early concerns
about the child’s or youth’s development or about
changes in the child’s or youth’s status (e.g., mental
health needs related to behavioral challenges in school),
specific diagnosis took time, and access to critical services thus was often delayed.
For many families, where to go and how to determine
which services were most appropriate were not clear. The
confusion was even more pronounced when multiple
professionals were involved (Brookman-Frazee et al.,
2012; Osborne & Reed, 2008), and some participants
found the “interpersonal skills of some professionals” to
be poor (Osborne & Reed, 2008, p. 309). Some informants reflected on the challenges that arose when
families and service providers disagreed about intervention (Gray, 1993). Thus, accessing and negotiating
services and establishing relationships with professionals
6905185030p4
were a source of overwhelming stress for many families
and people with autism. As Phelps, Hodgson, McCammon,
and Lamson (2009) noted,
Caregivers often first come into contact with service
providers when seeking a diagnosis for their child. . . .
This journey to diagnosis is often followed by entrance
into the special education system. Once the child
transitioned into the special education system, caregivers’ frustrations were unmistakable. Many caregivers
did not feel heard or acknowledged. . . . One of the
most significant findings of this study, seeing as communication and trust of professionals is a gauge of
parental satisfaction, . . . [is that] “professionals in the
medical field lack the patience and understanding of
dealing with persons with autism.” The overwhelming
conclusion from caregivers was the need for more education for some providers in the medical, judicial, and
educational systems. (p. 31).
Times of transition may be an additional aspect of
negotiating the services within a system that may be especially
difficult for people with autism and their families (Stoner,
Angell, House, & Bock, 2007). Although researchers identified factors that can support successful transitions (e.g.,
child-centered services, adequate communication and preparation), many families expressed frustration when working
with professionals to prepare for and implement transitions
across settings. Often this frustration resulted in increased
stress during an already stressful time.
Day-to-Day Experience of Autism
The day-to-day experience of autism from the perspective of
family members (DeGrace, 2004; Gray, 2006; Kuhaneck
et al., 2010; Mascha & Boucher, 2006; Phelps et al., 2009;
Schall, 2000; Stoner et al., 2007) or children or youth with
autism (Browning, Osborne, & Reed, 2009; Carrington &
Graham, 2001; Carrington, Templeton, & Papinczak,
2003; Huws & Jones, 2008; Jones, Quigney, & Huws,
2003) was a prevalent theme in many of the articles. Family
members reflected on the challenges and rewards of having
a child diagnosed with autism (Farrugia, 2009; Kuhaneck
et al., 2010). Some were surprised at their strength amid the
challenges, and others expressed frustration with gaining
access to the system and obtaining appropriate supports.
As a result of having a child or youth with ASD in the
home, these families experienced unique challenges and
changes in their daily occupations. Many activities, routines,
and rituals were changed to revolve around the needs of the
child or youth with ASD (Gray, 2001). Some mentioned
fear of the unknown as a constant in their lived experience:
“Parents also spoke of their concern about the unknown.
They did not know how much their child would progress,
September/October 2015, Volume 69, Number 5
they sought out other parents . . . to listen to their stories,
and hoped for as much progress as possible” (Stoner et al.,
2007, p. 35).
The day-to-day experience of having a child with autism
resulted in changes to the social lives of many parents and the
construction of a new family identity (Farrugia, 2009). In
more recent publications, parents increasingly reflected on
the positives and strengths that were part of this lived experience: “Although overwhelming stress might result from
raising a child with autism, 17 families reported that their
coping mechanisms improved because of this experience”
(Altiere & Von Kluge, 2009, p. 146); distinct coping strategies assisted in developing a positive attitude (Kuhaneck
et al., 2010). The challenges and changes were dynamic,
calling for ongoing growth and adaptations in families’
lives, both individually and as a family, and the availability
of service providers for support, information, and strategies
(Gray, 1993; Schaaf, Toth-Cohen, Johnson, Outten, &
Benevides, 2011).
Reframing Family
The reframing family theme had two dimensions: family
and provider. For families of children with autism,
reframing family involved restructuring their expectations
for parent–child interactions, family routines, and even
the structure of their home (Altiere & Von Kluge, 2009;
DeGrace, 2004; Schaaf et al., 2011). A participant in
Gray’s (2001) study reported,
You don’t have a normal family life. Our whole family
has to cater [to] Jane’s needs. You can’t go out very often
as a family. You’ve got to watch [her] a lot more closely,
a lot more closely than normal for [someone] her age. I
think the whole family has more or less had to shoulder
the burden and that includes [my sons]. (p. 1252)
Many families and older youth exerted considerable
energy to resist the stigma of the diagnosis and thus
reframe family and self by constructing a changed identity
(Farrugia, 2009). This reframing was not always negative;
one informant reflected, “We are better, more patient,
and understanding towards life in general. It has changed
the big picture and put life into perspective” (Phelps
et al., 2009, p. 29).
The studies also highlighted the dimension of service
providers, who help reframe family by providing services
and support in partnership with families, caregivers, and
children and youth with autism. Strategies identified included working with families to modify routines or lifestyles,
find stress relief, implement appropriate accommodations
across environments and contexts both inside and outside the
home (Larson, 2006), and increase families’ knowledge of
The American Journal of Occupational Therapy
the diagnosis and laws to facilitate their child’s participation
in occupation in the community.
Discussion
Although the six approaches identified by Case-Smith and
Arbesman (2008) provided some initial evidence of intervention effectiveness relevant to occupational therapy
services for children and youth with autism, the emerging
conceptual themes from the current content analysis of
published qualitative research contribute to a deeper understanding of their families and the ways their occupations are enhanced or inhibited by this diagnosis. This
understanding in turn may enhance occupational therapy
practitioners’ clinical reasoning when working with this
population.
Many of the studies in the Case-Smith and Arbesman
(2008) review used a bottom-up approach to services,
meaning that they addressed the disability or client factors
specific to the diagnosis of autism and the evidence for remediating these deficits. Left unaddressed, however, were
large realms of the Framework (e.g., habits, routines, family
and community participation), the child’s or youth’s life
context (which includes parents, siblings, and classmates),
and the clinical reasoning processes crucial to the practice of
occupational therapy (e.g., interactive reasoning, conditional
reasoning). The findings of the current study are consistent
with the emerging shift in disability research from a disablement framework to a framework with a greater emphasis
on health and well-being (Larson, 2006) and participation in
life roles and expectations.
Occupational therapy practitioners can benefit from
using both quantitative and qualitative research to inform
practice when working with children and youth with ASD
and their families. The qualitative research and the disablement literature support emphasizing and building on the
strengths of people with autism and their families (Larson,
2006). The use of a top-down approach to intervention is
consistent with current trends in occupational therapy as
well (AOTA, 2014). Additionally, the qualitative evidence
helps support services not only for children and youth with
ASD but also for other clients such as family members and
the systems these families must navigate.
Occupational therapy practitioners who are attentive to
the challenges of navigating the system may be able to include strategies and support as part of their evaluation and
intervention. For instance, once a diagnosis is given, practitioners can listen to the family and ask about their understanding of the diagnosis, ask how to help, refer them to
appropriate professionals along the way, and connect them
with other families who can relate to their experiences.
6905185030p5
Critical also is ensuring that the child or youth with ASD has
the necessary communication skills, as appropriate.
Taking into account the day-to-day experience of
autism during evaluation and intervention is one way for
practitioners to be better informed regarding the needs of
children or youth with ASD and their families. Services
throughout the occupational therapy process may result in
better outcomes if they are family centered and attend to
family occupations, daily activities, routines, rituals, and
client factors of the child or youth with autism and the family.
Practitioners need to understand the unique experiences,
perspectives, and feelings of these families.
Family-centered care has been discussed in the literature
for many years. In a majority of the articles we reviewed,
analyzed, and coded, the importance of communication
between the parent and practitioner was directly or indirectly
stated. Establishing a therapeutic relationship is critical in
helping families make effective accommodations that meet
the needs of children and youth with autism. Occupational
therapy practitioners can partner with families to scaffold
intervention strategies so as to best meet developmental and
health needs. Specifically, accommodations can be implemented that address routines, rituals, transitions, and social
skills and that accept the unique qualities of the child or
youth with autism: “Once in place, routines aided mothers
in providing predictable expectations for the child that
smoothed the way for participation. . . . Routines helped
children feel content” (Larson, 2006, p. 72). Routines also
allow families to function better (DeGrace, 2004; Kuhaneck
et al., 2010).
Occupational therapy practitioners can support families in their need to reframe family by helping them participate in life roles, make choices and create strategies that
work for them, and establish and reestablish routines and
accommodations that enable the family to participate in
chosen occupations. Attention to social participation and
sense of identity as part of evaluation and intervention also
helps families address this identified need. Additionally,
occupational therapy practitioners should remember that
reframing family is not always a negative experience
(Kuhaneck et al., 2010) but often is viewed as positive:
If parents dwell on negative attributions of this event
[having a child with autism], they are likely to cope
poorly with the situation. In the present study, nearly
every parent was able to describe a positive learning
experience gained from raising his or her child. . . . They
noticed that they became more patient, compassionate,
humble, and accepting. . . . Parents did not resent their
child and viewed him/her as an integral member of their
family. Instead of struggling to find a way to cope with
the situation, many parents stated that their coping
6905185030p6
mechanisms had improved, and they had developed
more meaningful relationships with friends and family
members. (Altiere & Von Kluge, 2009, p. 150)
Implications for Occupational
Therapy Practice
The findings of this content analysis, combined with those
of Case-Smith and Arbesman (2008), provide occupational
therapy practitioners not only with key information for
clinical reasoning related to client factors, performance skills,
and performance patterns but also key evidence supporting
the account of the child’s or youth’s and family’s lived experience. These findings can deepen practitioners’ understanding and thus their judgment in complex situations. In
addition, the findings have the following implications for
occupational therapy practice:
• Occupational therapy services with this population should
consider not only the person with autism but also the
impact on family routines, including access to services.
• Optimal practice includes working directly with the
child or youth with ASD while attending to the needs of
family members and other stakeholders, providing effective coping strategies (Kuhaneck et al., 2010), addressing
needs within organizations (e.g., helping organizations or
systems understand the unique characteristics and mental
health needs of this population; Brookman-Frazee et al.,
2012), and addressing the needs of populations (e.g.,
helping parents of preschoolers contextualize the sensory
experiences of their children; Dickie, Baranek, Schultz,
Watson, & McComish, 2009).
• Occupational therapy practitioners working with this
population should consider the findings of both studies
when completing the initial evaluation and throughout
the provision of services. They should include questions
regarding access to services, day-to-day routines, and
family functioning as part of the occupational profile.
An example from one of the authors’ caseload illustrates
the implications of our findings. A child had recently received a diagnosis of autism, and frustration emerged
quickly not only in the family but also in the occupational
therapist. The therapist was not present when the family
was told about the child’s diagnosis yet had been one of the
key professionals to help the family navigate the system
thus far. The family wanted to know what the diagnosis
meant for their child, how to tell his siblings, and what
their family’s future would hold. The mother reported to
the therapist that during the meeting in which they learned
about the diagnosis, the health care professional had asked
whether she or her husband had any questions. The mother
September/October 2015, Volume 69, Number 5
stated that they had remained quiet; they were shocked but
felt expected to function well enough to ask questions.
The therapist worked with the family, helping them
interpret the recommendations and gain access to resources.
The therapist also connected the family with others who could
guide them through the world of insurance, other services, and
school system rights. Through working with this family to
address not only the impairments of the child but also the
needs of the family as a whole, the therapist confirmed that
actively listening and allowing families to ask questions at their
own pace were key to building a therapeutic relationship.
Initially, these parents tried everything to “fix” their
child, but the time came when they reframed their family’s
occupations by accepting their child for who he was and
ceasing to worry about what he was supposed to be or how
they should act. The family came to enjoy the child’s
“quirks”; at one point, the mother stated, “He has been the
best gift to our family. He teaches us that there are a variety
of ways to think and act, which does not harm anyone. It is
just different.” Through this journey with the family, the
therapist also learned to appreciate the child for who he was
and to appreciate the child’s and family’s lived experience as
they negotiated this new experience.
Study Limitations
Although the results of this content analysis are promising
as a resource to help inform the clinical reasoning of
occupational therapy practitioners working with children
and youth with ASD and other stakeholders, the findings
should be interpreted with caution. This content analysis
addresses qualitative research published through 2011.
Since 2011, qualitative research on children and youth
with ASD has increased. Additionally, more occupational
therapy–specific articles have been published, both in the
United States (Foster, Dunn, & Lawson, 2013; Haertl,
Callahan, Markovics, & Sheppard, 2014; Suarez, Atchison, &
Lagerwey, 2014) and internationally (Ashburner, Bennett,
Rodger, & Ziviani, 2013; Joosten & Safe, 2014; Marquenie,
Rodger, Mangohig, & Cronin, 2011). It may be that
additional themes will arise from these more recent articles.
A second limitation is that 30 articles from the second
review were randomly selected out of 76 for in-depth
review. Saturation of the data appears to have occurred,
but a new code might have arisen if additional articles had
received the same in-depth review.
Directions for Future Research
It may be beneficial for the additional 46 articles to be read
and coded. Additionally, a content analysis of articles
The American Journal of Occupational Therapy
published after 2011 should be completed. A metasynthesis
of the two content analyses would add rigor to the peer
review process (Patterson, Thorne, Canam, & Jillings, 2001)
and may result in a further refinement of the findings.
After completion of a metasynthesis, additional research
will be needed to inform occupational therapy practitioners
how to effectively apply these findings to practice. Specific
studies could address how practitioners’ understanding of the
family’s perspective influences the occupational therapy
process, service provision, the family’s health and well-being,
and long-term outcomes relevant for the family. Ultimately,
a rigorous combination of quantitative (Case-Smith &
Arbesman, 2008) and qualitative evidence in a grand
megasynthesis (Tomlin & Borgetto, 2011) could provide
practitioners with the most comprehensive guidance for
making practice decisions for children and youth with
autism and their families and for providing families with
the assistance they desire in navigating their world.
Conclusion
Through the use of evidence from both qualitative and
quantitative studies, practitioners who work with children
and youth with autism and their families may be better
able to meet the unique needs of each child or youth and
family. Occupational therapy practitioners should attend
to the qualitative research evidence to
• Inform clinical reasoning,
• Understand the complexities families may face when
negotiating systems,
• Have a better understanding of the lived experience of
autism,
• Assist families in their reframing of what family occupations mean to them, and
• Best apply the Framework when working with children
and youth with ASD and their families by knowing
how to move fluidly between top-down and bottomup approaches during evaluation and intervention. s
References
Altiere, M. J., & von Kluge, S. (2009). Family functioning and
coping behaviors in parents of children with autism. Journal of Child and Family Studies, 18, 83–92. http://dx.doi.
org/10.1007/s10826-008-9209-y
American Occupational Therapy Association. (2007). AOTA’s
Centennial Vision and executive summary. American Journal of Occupational Therapy, 61, 613–614. http://dx.doi.
org/10.5014/ajot.61.6.613
American Occupational Therapy Association. (2014). Occupational therapy practice framework: Domain and process
(3rd ed.). American Journal of Occupational Therapy,
6905185030p7
68(Suppl. 1), S1–S48. http://dx.doi.org/10.5014/ajot.2014.
682006
Ashburner, J., Bennett, L., Rodger, S., & Ziviani, J. (2013).
Understanding the sensory experiences of young people
with autism spectrum disorder: A preliminary investigation.
Australian Occupational Therapy Journal, 60, 171–180.
http://dx.doi.org/10.1111/1440-1630.12025
Brookman-Frazee, L., Baker-Ericzén, M., Stadnik, N., &
Taylor, R. (2012). Parent perspectives on community mental
health services for children with autism spectrum disorders.
Journal of Child and Family Studies, 21, 533–544. http://
dx.doi.org/10.1007s10826-011-9506-8
Browning, J., Osborne, L. A., & Reed, P. (2009). A qualitative
comparison of perceived stress and coping in adolescents
with and without autistic spectrum disorders as they approach leaving school. British Journal of Special Education,
36, 36–43. http://dx.doi.org/10.1111/j.1467-8578.2008.
00400.x
Carrington, S., & Graham, L. (2001). Perceptions of school by
two teenage boys with Asperger syndrome and their mothers: A qualitative study. Autism, 5, 37–48. http://dx.doi.
org/10.1177/1362361301005001004
Carrington, S., Templeton, E., & Papinczak, T. (2003).
Adolescents with Asperger syndrome and perceptions
of friendship. Focus on Autism and Other Developmental
Disabilities, 4, 211–218. http://dx.doi.org/10.1177/
10883576030180040201
Case-Smith, J., & Arbesman, M. (2008). Evidence-based review of interventions for autism used in or of relevance to
occupational therapy. American Journal of Occupational
Therapy, 62, 416–429. http://dx.doi.org/10.5014/ajot.
62.4.416
Cavanagh, S. (1997). Content analysis: Concepts, methods and
applications. Nurse Researcher, 4, 5–16. http://dx.doi.org/
10.7748/nr1997.04.4.3.5.c5869
Centers for Disease Control and Prevention. (2014). Autism
spectrum disorder. Retrieved from http://www.cdc.gov/
ncbddd/autism/data.html
Coster, W. (1998). Occupation-centered assessment of children. American Journal of Occupational Therapy, 52,
337–344. http://dx.doi.org/10.5014/ajot.52.5.337
Coster, W. J., Gillette, N., Law, M., Lieberman, D., & Scheer,
J. (2004). AHRQ grant final progress report: International
conference on evidence based occupational therapy. Bethesda,
MD: American Occupational Therapy Foundation.
DeGrace, B. W. (2004). The everyday occupation of families
with children with autism. American Journal of Occupational Therapy, 58, 543–550. http://dx.doi.org/10.5014/
ajot.58.5.543
Dickie, V. A., Baranek, G. T., Schultz, B., Watson, L. R., &
McComish, C. S. (2009). Parent reports of sensory experiences of preschool children with and without autism: A
qualitative study. American Journal of Occupational Therapy,
63, 172–181. http://dx.doi.org/10.5014/ajot.63.2.172
Farrugia, D. (2009). Exploring stigma: Medical knowledge and
the stigmatisation of parents of children diagnosed with
autism spectrum disorder. Sociology of Health and Illness,
31, 1011–1027. http://dx.doi.org/10.1111/j.1467-9566.2009.
01174.x
6905185030p8
Fleming, M. H. (1991). The therapist with the three-track
mind. American Journal of Occupational Therapy, 45,
1007–1014. http://dx.doi.org/10.5014/ajot.45.11.1007
Foster, L., Dunn, W., & Lawson, L. M. (2013). Coaching
mothers of children with autism: A qualitative study for
occupational therapy practice. Physical and Occupational
Therapy in Pediatrics, 33, 253–263. http://dx.doi.org/
10.3109/01942638.2012.747581
Graneheim, U. H., & Lundman, B. (2004). Qualitative content analysis in nursing research: Concepts, procedures
and measures to achieve trustworthiness. Nurse Education Today, 24, 105–112. http://dx.doi.org/10.1016/
j.nedt.2003.10.001
Gray, D. E. (1993). Perceptions of stigma: The parents of
autistic children. Sociology of Health and Illness, 15,
102–120. http://dx.doi.org/10.1111/1467-9566.ep11343802
Gray, D. E. (2001). Accommodation, resistance and transcendence: Three narratives of autism. Social Science and
Medicine, 53, 1247–1257. http://dx.doi.org/10.1016/
S0277-9536(00)00424-X
Gray, D. E. (2006). Coping over time: The parents of children
with autism. Journal of Intellectual Disability Research, 50,
970–976. http://dx.doi.org/10.1111/j.1365-2788.2006.
00933.x
Gutman, S. A., Mortera, M. H., Hinojosa, J., & Kramer, P.
(2007). Revision of the Occupational Therapy Practice
Framework. American Journal of Occupational Therapy,
61, 119–126. http://dx.doi.org/10.5014/ajot.61.1.119
Haertl, K., Callahan, D., Markovics, J., & Sheppard, S. S.
(2014). Perspectives of adults living with autism spectrum
disorder: Psychosocial and occupational implications. Occupational Therapy in Mental Health, 29, 27–41. http://dx.
doi.org/10.1080/0164212X.2012.760303
Huws, J. C., & Jones, R. S. P. (2008). Diagnosis, disclosure,
and having autism: An interpretative phenomenological
analysis of the perceptions of young people with autism.
Journal of Intellectual and Developmental Disability, 33,
99–107. http://dx.doi.org/10.1080/13668250802010394
Jones, R. S. P., Quigney, C., & Huws, J. C. (2003). First-hand
accounts of sensory perceptual experiences in autism: A
qualitative analysis. Journal of Intellectual and Developmental Disability, 28, 112–121. http://dx.doi.org/10.1080/
1366825031000147058
Joosten, A. V., & Safe, A. P. (2014). Management strategies of
mothers of school-age children with autism: Implications
for practice. Australian Occupational Therapy Journal, 61,
249–258. http://dx.doi.org/10.1111/1440-1630.12116
Kuhaneck, H. M., Burroughs, T., Wright, J., Lemanczyk, T.,
& Darragh, A. R. (2010). A qualitative study of coping
in mothers of children with an autism spectrum disorder. Physical and Occupational Therapy in Pediatrics,
30, 340–350. http://dx.doi.org/10.3109/01942638.2010.
481662
Larson, E. (2006). Caregiving and autism: How does children’s
propensity for routinization influence participation in family
activities? OTJR: Occupation, Participation and Health, 26,
69–79. http://dx.doi.org/10.1177/153944920602600205
Marquenie, K., Rodger, S., Mangohig, K., & Cronin, A.
(2011). Dinnertime and bedtime routines and rituals in
September/October 2015, Volume 69, Number 5
families with a young child with an autism spectrum disorder.
Australian Occupational Therapy Journal, 58, 145–154. http://
dx.doi.org/10.1111/j.1440-1630.2010.00896.x
Mascha, K., & Boucher, J. (2006). Preliminary investigation of
a qualitative method of examining siblings’ experiences of
living with a child with ASD. British Journal of Developmental Disabilities, 52, 19–28. http://dx.doi.org/10.1179/
096979506799103659
Osborne, L. A., & Reed, P. (2008). Parents’ perceptions of
communication with professionals during the diagnosis of
autism. Autism, 12, 309–324. http://dx.doi.org/10.1177/
1362361307089517
Patterson, B. L., Thorne, S. E., Canam, C., & Jillings, C. (2001).
Meta-study of qualitative health research: A practical guide to
meta-analysis and meta-synthesis. Thousand Oaks, CA: Sage.
Phelps, K. W., Hodgson, J. L., McCammon, S. L., & Lamson,
A. L. (2009). Caring for an individual with autism disorder: A qualitative analysis. Journal of Intellectual and
Developmental Disability, 34, 27–35. http://dx.doi.org/
10.1080/13668250802690930
Schaaf, R. C., Toth-Cohen, S., Johnson, S. L., Outten, G., &
Benevides, T. W. (2011). The everyday routines of families of children with autism: Examining the impact of
sensory processing difficulties on the family. Autism, 15,
373–389. http://dx.doi.org/10.1177/1362361310386505
The American Journal of Occupational Therapy
Schall, C. (2000). Family perspectives on raising a child with
autism. Journal of Child and Family Studies, 9, 409–423.
http://dx.doi.org/10.1023/A:1009456825063
Schell, B. A. B., & Schell, J. W. (Eds.). (2008). Clinical and
professional reasoning in occupational therapy. Baltimore:
Lippincott Williams & Wilkins.
Stoner, J. B., Angell, M. E., House, J. J., & Bock, S. J. (2007).
Transitions: A parental perspective from parents of young
children with autism spectrum disorder (ASD). Journal of
Developmental and Physical Disabilities, 19, 23–39. http://
dx.doi.org/10.1007/s10882-007-9034-z
Suarez, M. A., Atchison, B. J., & Lagerwey, M. (2014). Phenomenological examination of the mealtime experience for
mothers of children with autism and food selectivity.
American Journal of Occupational Therapy, 68, 102–107.
http://dx.doi.org/10.5014/ajot.2014.008748
Tomlin, G. S. (2008). Scientific reasoning. In B. A. B. Schell
& J. W. Schell (Eds.), Clinical and professional reasoning in
occupational therapy (pp. 96–124). Baltimore: Lippincott
Williams & Wilkins.
Tomlin, G., & Borgetto, B. (2011). Research Pyramid: A
new evidence-based practice model for occupational
therapy. American Journal of Occupational Therapy,
65, 189–196. http://dx.doi.org/10.5014/ajot.2011.
000828
6905185030p9
Copyright of American Journal of Occupational Therapy is the property of American
Occupational Therapy Association and its content may not be copied or emailed to multiple
sites or posted to a listserv without the copyright holder's express written permission.
However, users may print, download, or email articles for individual use.
Purchase answer to see full
attachment