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81
OTJR: Occupation, Participation and Health • Vol. 34, No. 2, 2014
Participation in a balance of occupations, refer-
ring to a range of satisfactory and meaning-
ful occupations, can promote health and
well-being (Law, 2002; Matuska, 2012a; Matuska
& Barrett, 2014; Stein, Foran, & Cermak, 2011).
Inherent to perceptions of balance are considerations
of the congruence between the actual and desired
time individuals spend in daily activities given
their life circumstances, and appreciation that the
perception of what constitutes occupational balance
is personal (Matuska, 2012a, 2012b). Parenting, usu-
ally a rewarding, meaningful, and desired life role,
can also present significant challenges for parents in
achieving balance related to family, personal, and
work responsibilities. Inevitably, having children
changes how parents, especially mothers, allocate
their time, especially when children are young
(Bourke-Taylor, Howie, & Law, 2010; Crowe &
Michael, 2011; McCann, Bull, & Winzenberg, 2012).
In most families, mothers alter participation in paid
employment and leisure occupations to create the
time required for child care responsibilities (Craig &
Bittman, 2008).
Mothers of children with autism consistently ac-
knowledge a desire for maintaining occupational
balance in their lives for the well-being of themselves
Dr. Hodgetts is Assistant Professor and Dr. McConnell is Professor, Department of Occupational Therapy, Faculty of
Rehabilitation Medicine, University of Alberta, Dr. Zwaigenbaum is Professor, Department of Pediatrics, University of Alberta,
and Co-Director, Autism Research Centre, Glenrose Rehabilitation Hospital, and Dr. Nicholas is Associate Professor, Faculty of
Social Work, University of Calgary (Edmonton Division), Edmonton, Alberta, Canada.
Submitted: June 28, 2013; Accepted: December 13, 2013; Posted online: January 17, 2014
The authors have no financial or proprietary interest in the materials presented herein.
Address correspondence to Sandra Hodgetts, PhD, OT, Assistant Professor, Department of Occupational Therapy, Faculty
of Rehabilitation Medicine, University of Alberta, 8205 114 Street, 2-64 Corbett Hall, Edmonton, Alberta, Canada T6G 2G4;
e-mail: sandra.hodgetts@ualberta.ca.
doi:10.3928/15394492-20130109-01
The Impact of Autism Services on Mothers’
Occupational Balance and Participation
Sandra Hodgetts, PhD, OT; David McConnell, PhD, OT; Lonnie Zwaigenbaum,
MD; and David Nicholas, PhD, RSW
key words: mixed methods, employment, leisure
ABSTRACT
This mixed-methods study examined the impact of professional services on employment and
leisure participation of mothers of children with autism. In Phase 1, 139 mothers with a child
with autism completed a comprehensive survey addressing their experiences with services
and occupational participation. In Phase 2, in-depth interviews, informed by grounded theory
methodology, were conducted with a sub-sample of 19 mothers to discuss their experiences
with services and the relationship between services, employment, and leisure participation.
Findings revealed that discontinuity of services was a significant predictor of disrupted
employment and/or leisure. A process of occupational imbalance and sacrifice emerged related
to mothers’ foregoing participation in personally meaningful occupations to focus time on
navigating and participating in professional services for their child. Our findings suggest that
many professionals who work with individuals with autism conceptually value family-centered
care; yet, actual services often ignore family issues and focus exclusively on the child. [OTJR:
Occupation, Participation and Health. 2014; 34(2):81-92.]
82 Copyright © American Occupational Therapy Foundation
and their families. Yet, the significant care needs as-
sociated with parenting a child with autism increas-
es the potential for mothers’ occupational imbalance
and sacrifice (Rizk, Pizur-Barnekow, & Darragh,
2011), which refers to one’s inability to participate in
desired occupations because of externally imposed
demands (Wilcock, 2006). Mothers report that bal-
ance is difficult to achieve because their daily lives
often revolve around their child with autism due to
the sheer number of daily tasks that need to get done,
a lack of acceptance and support by their communi-
ties, and the need for constant vigilance because of
disruptive or unsafe behaviors (Bourke-Taylor et al.,
2010; Donovan, VanLeit, Crowe, & Keefe, 2005; Mc-
Guire, Crowe, Law, & VanLeit, 2004; Stein et al., 2011;
VanLeit & Crowe, 2002). Tunali and Power (2002)
suggested that parents of children with autism cope
with these multiple occupational demands by rede-
fining their own needs; for example, by placing less
importance on career and career-related occupations
than mothers of children without autism. This inter-
pretation, however, is not consistent with literature
that found these mothers do not have less desire
for paid employment and may even demonstrate
a greater desire to work than people with less con-
straints on workforce participation (Gordon, Rosen-
man, & Cuskelly, 2007). This is not surprising since
workforce participation is associated with increased
social support and decreased feelings of isolation,
improved self-esteem, and an identity outside of
being a parent of a child with a disability (Baker &
Drapela, 2010; McGuire et al., 2004).
Leisure occupations that provide time and space
for self, such as quiet individual pursuits (e.g., read-
ing), one-on-one time with a spouse or other chil-
dren, and time with friends, are often sacrificed first
(Donovan et al., 2005; McGuire et al., 2004). This is
despite placing the same emphasis as mothers in
general on the importance of individual leisure pur-
suits (Tunali & Power, 2002) and reporting that their
most important personal occupational goals include
those that support time for exercise, recreation, and
relaxation (Donovan et al., 2005).
Above and beyond the lived experiences of parent-
ing a child with autism, involvement with profession-
al supports and services can further disrupt mothers’
usual patterns of occupational engagement. Parents
of children with autism use an average of four to sev-
en therapies at any one time (Goin-Kochel, Myers, &
Mackintosh, 2007; Green et al., 2006). Many therapies
claim to be based on a philosophy of family-centered
care, which is a broadly defined practice philosophy
in which parents and service providers work in part-
nership, and supports and services coincide with
changing needs and priorities of the family (Wood-
side, Rosenbaum, King, & King, 2001). Although
mothers of children with autism appreciate the sup-
port provided by therapists (Bourke-Taylor et al.,
2010; Donovan et al., 2005), their recommendations
for child-focused activities to support child develop-
ment can also increase mothers’ caregiving responsi-
bilities, further limiting occupational balance, even
in the context of family-centered services (Hodgetts,
Nicholas, Zwaigenbaum, & McConnell, 2013; Mc-
Guire et al., 2004). Mothers also spend a significant
amount of time finding, accessing, and retaining ser-
vices; coordinating services between sectors; advocat-
ing for their children; and driving their children to
appointments (Bourke-Taylor et al., 2010; Donovan et
al., 2005; Hodgetts et al., 2013; McCann et al., 2012;
McGuire et al., 2004).
Although tacitly implied in literature on the lived
experiences of parenting, or discussed in the con-
text of how occupational therapists and other health
professionals can better support families, limited
research has specifically looked at the impact of
professional (therapeutic) services on mothers’ oc-
cupational engagement. Therefore, this study inves-
tigated the impact of professional services on moth-
ers’ ability to participate in personally meaningful
workforce and leisure occupations. Primary aims
of this study were to: (a) describe the impact that
professional services had on mothers’ workforce
and leisure participation; (b) identify salient child,
family, and/or service characteristics that predicted
disrupted workforce and leisure participation; and
(c) explore characteristics of professional services
that contributed to mothers’ occupational imbal-
ance, grounded in the experience of mothers. We
addressed two primary hypotheses: (1) professional
services would decrease mothers’ ability to partici-
pate in personally meaningful workforce and leisure
occupations; and (2) increased numbers, frequency,
and locations of services; decreased continuity of
services; and decreased responsiveness of profes-
sionals (reflecting the provision of family-centered
care) would predict disrupted employment and lei-
sure participation.
Method
Design
Approval was obtained from the University of Al-
berta Health Ethics Research Board. This study rep-
resents a sub-analysis of data from a larger mixed-
methods study investigating the processes by which
families navigate systems of care for young people
83
OTJR: Occupation, Participation and Health • Vol. 34, No. 2, 2014
with autism. An explanatory, sequential, mixed-
methods (survey followed by interview) design was
used (Creswell & Plano Clark, 2011). This order of
inquiry (quantitative followed by qualitative) al-
lowed us to provide greater context and garner a
more nuanced understanding of the complexities of
the issue than either independent methodology. In
other words, the quantitative component helped de-
scribe rates and predictors of disrupted employment
and leisure participation, whereas the qualitative
component helped explain mothers’ perceptions of
why participation changed and the processes used
to navigate both professional services and participa-
tion in personally meaningful occupations.
Participants
Participants were mothers of a child, adolescent,
or young adult with autism living in Alberta, Cana-
da. A comprehensive survey that addressed various
facets related to navigating services for families of
children with autism was mailed to a random sam-
ple of families registered with the autism clinic at the
local tertiary rehabilitation hospital (n = 80, 32% re-
sponse rate) and through snowball sampling (n = 59),
resulting in 139 surveys completed by mothers of a
child with autism. Responses were anonymous, but
mothers could provide contact information to also
participate in an interview to discuss their experi-
ences in more depth. Eighty-nine respondents (64%)
provided this information, from which 19 mothers
were interviewed, purposefully sampled for diversi-
ty in child, family, and service characteristics. Table
1 presents the participants’ demographic data.
Phase 1: Quantitative Survey Data
Data Collection. The comprehensive survey was
completed in 2011. It included a variety of standard-
ized measures embedded within the survey and ad-
ditional questions developed by the research team.
For this analysis, data were included from questions
developed by this research team and three standard-
ized measures, which are discussed below.
Information on the impact of services on moth-
ers’ workforce participation was obtained from the
question: “Have your child’s supports and service
needs had an impact on your employment?” (De-
pendent variable 1, Disrupted employment: 0 = no,
1 = yes), followed by “If so, in what way? Select all
that apply,” with seven options. Unfortunately, we
did not ask the same question related to leisure par-
ticipation, so we extracted information on mothers’
leisure participation through the following ques-
tions: “Would you like professionals to help you
find more time for yourself?” (Dependent variable
2, Disrupted leisure: 0 = no, 1 = yes), “What leisure
or recreational activities do you participate in?,” and
“What leisure or recreational activities does your
family participate in?”
Descriptive information about the number, fre-
quency, and location of professional supports and services
received was gathered with the Education and Reha-
bilitation Services Questionnaire, adapted to include
professionals who commonly work with people with
autism spectrum disorder and their families (Rem-
ple, Rogers, & Majnemer, 2010). (For more informa-
tion about the survey, contact Dr. Sandra Hodgetts.)
Mothers reported on how many and which of the fol-
lowing eight professions currently provided services
to their family: occupational therapy (OT), physical
therapy, speech language pathology (SLP), behav-
ioral consultation, psychology, social work, medical
specialists, and “other”; whether these services were
provided at home, school, and/or elsewhere; and
the frequency of contact with professionals using a
4-point scale (every 6 months or less, approximately
every 3 months, one to two times per month, once
per week or more).
A measure of the continuity of services over time
and across sectors (i.e., health, education, commu-
nity) was derived from the 15-item System Fragmen-
tation subscale of the Alberta Continuity of Services
Scale for Mental Health (ACSS, Adair et al., 2001).
This instrument, which uses a 5-point rating scale
ranging from strongly disagree to strongly agree, was
originally validated as a self-report measure for
adults with severe mental illness. With permission
from the authors, we adapted eight questions to fit
families of children with autism. For example, “I’ve
had to repeat my history every time I need help”
was changed to “I’ve had to repeat my child’s his-
tory every time I need help.” Confirmatory factor
analysis (CFA) was used to validate this construct,
and low-loading items were eliminated (see Statisti-
cal Data Analyses below).
The responsiveness of agencies/practitioners to
family needs and priorities was obtained using the
20-item Measure of Processes of Care (MPOC-20;
King, King, & Rosenbaum, 2004). The MPOC-20 uses
a 7-point scale to measure parents’ perceptions of
the extent to which “the people who work with your
child” have demonstrated various family-centered
behaviors during the past year. Five domain scores
can be calculated from the MPOC-20: Enabling and
Partnership, Providing General Information, Provid-
ing Specific Information, Coordinated and Compre-
hensive Care, and Respectful and Supportive Care.
Similar to the construct of continuity of care, CFA was
used to validate this construct as outlined below.
84 Copyright © American Occupational Therapy Foundation
Parents also provided demographic information,
including their child’s age, intellectual ability (1 =
moderate/severe delay, 2 = mild delay, 3 = average/
above average); language ability (1 = fewer than five
spoken words, 2 = more than five spoken words but
not sentences, 3 = some sentences but not conver-
sational, 4 = conversational language); presence of
disruptive behaviors (0 = no, 1 = yes); and adaptive
behavior deficits (0 = no, 1 = yes). In addition, moth-
ers reported on their family type (single parent or
co-parenting), gross household income, educational
attainment, primary language spoken at home, geo-
graphical location, and total number of other chil-
dren in the home.
Statistical Data Analyses. Statistical analyses
were completed using SPSS version 20 and SPSS
Table 1
Sample Demographic Data
Variable Questionnaires (n = 139) Interviews (n = 19)
Child’s age in years, mean (SD), range 10.4 (5.7), 2 to 32 10.7 (6.6), 3 to 29
Child’s language
Nonverbal/single words 29% 22%
Sentences, not conversational 24% 39%
Conversational 47% 39%
Child’s intellectual ability
Average/above average 37% 33%
Mild delay 20% 17%
Moderate/severe delay 43% 50%
Has disruptive behaviors 74% 61%
Mother’s age in years, mean (SD), range 41.2 (7.2), 26 to 63 43.4 (8.1), 34 to 63
Single mother 13% 6%
Number of other children in the home, mode (range) 1 (0 to 7) 1 (0 to 3)
Mother’s educational level
No postsecondary education 12% 22%
Some college or university 24% 17%
Completed college or university 55% 61%
Completed graduate studies 9% 0%
Household income
<$45,000 9% 11%
$45,000 to $75,000 22% 11%
$75,000 to $120,000 43% 61%
>$120,000 26% 17%
Residence: urban/suburban 92% 83%
Speaks English as primary language at home 86% 100%
Total number of professions involved, mode (range) 3 (0 to 8) 4 (0 to 5)
Frequency of contact with professionals
No professional services 14% 11%
Every 6 months or less 10% 11%
Every 3 months 6% 17%
Once or twice per month 36% 39%
Once per week or more 35% 22%
Note. Percentages may not total 100 due to rounding.
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OTJR: Occupation, Participation and Health • Vol. 34, No. 2, 2014
Amos version 20. All data were entered by a research
assistant and screened for accuracy by the lead au-
thor prior to analyses. Twenty cases were excluded
from the analyses due to completely missing scale
data (e.g., no ACSS data). Single imputation using
the expectation-maximization algorithm (Little &
Rubin, 1987) was used to estimate values for miss-
ing-at-random data and partially missing scale data
(e.g., values missing for some scale items).
CFA was used to validate and then derive mea-
sures (i.e., factor scores) of two latent constructs: the
responsiveness of agencies/practitioners to family
needs and priorities, and continuity of services. Items
that contributed little (i.e., factor loading < 0.50) to
the constructs they were intended to measure were
eliminated. Figure 1 presents the CFA results. Nota-
bly, it was necessary to drop the five MPOC-20 items
tapping the General Information domain from the
CFA to obtain sound overall model fit. Overall fit of
the measurement model was assessed using multi-
ple indices, including the x2 goodness-of-fit test, the
x2 value divided by its degrees of freedom (CMIN/
DF < 3 is good); the comparative fit index (> 0.95 is
good); and the root mean square error of approxima-
tion (RMSEA < 0.60 is good; Schreiber, Nora, Stage,
Barlow, & King, 2006). Appendix A (available in the
online version of this article) lists the specific items on
which the latent variables were based.
To address Hypothesis 1, we calculated the percent-
age of mothers who reported disrupted employment
and disrupted leisure. Descriptive statistics were also
calculated to describe the impact of professional ser-
vices on mothers’ participation in more detail.
A zero-order correlation matrix was then comput-
ed, and linear regression analyses were used to test
Hypothesis 2, which investigated service variables
that predicted disrupted employment and disrupted
leisure. Predictors were entered into the regression
analyses in two blocks to obtain unadjusted and ad-
justed estimates. The first block included key inde-
pendent service variables: multiplicity (total number
of different professionals involved), continuity, fre-
quency of contact (the most frequent level of contact
with any one professional), responsiveness, receipt
of home-based services (solely, or in combination
with school or other service locations), receipt of
rehabilitation services (OT, SLP), and receipt of be-
havior support (consultation from a psychologist or
behavior specialist regarding disruptive behavior).
The second block included relevant potential child/
mother/family covariates.
Phase 2: Qualitative Interview Data
Data Collection. Following analyses of quantita-
tive data, semi-structured interviews were completed
with mothers to better understand nuances of the
impact that professional services had on their work-
force and leisure participation and to explore in more
depth characteristics of professional services that
contribute to their occupational participation. Quali-
tative data collection was informed by the systematic
grounded theory approach described by Strauss and
Corbin (1998). Theoretical sampling guided data col-
lection and analysis, based on information provided
in Phase 1. Data were collected until the researchers
determined that no new or unique information was
emerging from the interviews. Negative case sam-
pling was also done to target participants who did
not appear to report disrupted employment and/or
Figure 1. Confirmatory factor analysis: Responsiveness
and continuity. Note. CFI = comparative fit index;
TLI = Tucker Lewis Index; RMSEA = root mean square
error of approximation.
Table 2
Survey Responses on Disrupted
Employment and Leisure (n = 139)
Disrupted Leisure
No Yes Total
Disrupted employment
No 14% 8% 22%
Yes 38% 40% 78%
Total 52% 48% 100%
86 Copyright © American Occupational Therapy Foundation
leisure participation on the survey, to help gain a full
understanding of the area of interest. In grounded
theory studies, this kind of sampling usually involves
participants new to the study; however, consistent
with an explanatory design, our participants had
completed Phase 1 (Creswell & Plano Clark, 2011). A
total of 19 interviews were conducted to reach satu-
ration. The first author, a postdoctoral research fel-
low with prior experience in qualitative interviewing
and working with families with children with autism
spectrum disorder, conducted all 1- to 2-hour inter-
views. An interview guide outlined broad open-end-
ed questions, allowing participants the opportunity to
describe their perceptions and experiences, while also
ensuring common coverage of topical areas between
interviews. Example questions included: “How have
services affected your personal time?” and “How
have services affected your ability to work?”
Qualitative Analyses. All interviews were
audiorecorded and transcribed verbatim with names
replaced by pseudonyms and other identifiers re-
moved. Interview transcripts were content analyzed
using constant comparison methods consistent with
a grounded theory approach (Strauss & Corbin,
1998), with data organized and stored using NVivo
version 9 qualitative analysis software. An electron-
ic copy of each transcript was open coded through
line-by-line coding by one of three team members
(postdoctoral fellow and two trained graduate-level
research assistants). Open coding searches for mean-
ing in the data that emerge by identifying naturally
occurring themes depicted by participants (Strauss
& Corbin, 1998). However, team members did have
prior knowledge of Phase 1 findings, which influ-
enced the salience of statements that opposed or
were consistent with key quantitative results (e.g.,
statements related to continuity of care or respon-
siveness of professionals). Codes were labeled to re-
flect emerging concepts of occupational engagement
(e.g., time for self, employment). Consistent with
the emergent nature of qualitative research meth-
ods, codes were refined and clustered into themes
as analysis progressed. Themes were organized into
a table to show frequency and compare themes be-
tween employment and leisure participation (see
Results below). Team members met regularly dur-
ing analysis to review and verify codes and themes,
and any disagreements were resolved through dis-
cussion so consensus was achieved at this level of
analysis. Means of rigor included negative case anal-
ysis, acknowledgement of potential biases rooted in
Phase 1 findings or clinical experience, critical re-
flective dialogue with colleagues about the research
process and data, member checking in the form of
clarification probes throughout each interview, and
prolonged engagement by team members immersed
in autism (Strauss & Corbin, 1998).
Results
Impact of Professional Supports and Services on
Mothers’ Workforce Participation
Quantitative Results. Involvement with profes-
sional supports and services decreased mothers’
ability for workforce participation: 78% of our sur-
Figure 2. Ways in which services impacted mothers’ employment.
87
OTJR: Occupation, Participation and Health • Vol. 34, No. 2, 2014
vey respondents (n = 108) reported that the profes-
sional supports and services for their child impacted
their employment above and beyond the lived ex-
perience of parenting a child with autism (Table 2).
Figure 2 depicts the specific ways in which moth-
ers’ employment was impacted by their children’s
services. Categories were not mutually exclusive.
Half of the mothers chose their job to specifically
meet their child’s service needs, almost one third of
the mothers decreased work hours and/or stopped
working because of their child’s service needs, and
almost one fifth of the mothers moved their family
to a new geographical location to access services.
As previously mentioned, we added predictors
of disrupted employment into the linear regression
analysis in two blocks: service variables, and child/
mother/family variables (Table 3; the zero-order
correlation matrix for occupational disruption and
autism service characteristics is provided in Table
4). Contrary to our hypothesis, only continuity of
services demonstrated a statistically significant effect
on the likelihood of the mother reporting disrupted
employment. For every standard deviation increase
in perceived continuity of services, the “risk” of re-
porting disrupted employment decreased by a factor
of approximately 2.
Qualitative Results. Interview participants dis-
cussed the impact of their child’s service needs on
their workforce participation. Six interviewed moth-
ers worked full time, and nine worked part time.
Four mothers did not work in paid employment, one
of whom clarified that she would have chosen to stay
home with her children regardless of the additional
demands of her child’s service needs. Overall, par-
ticipation in services often had a negative and last-
ing impact on mothers’ ability to participate in the
workforce. As shown in Table 5, two themes related
to employment and services emerged: (a) Something
Table 3
Regression Table: Predictors of Occupational Disruption
Disrupted Employment Disrupted Leisure
Model 1 Model 2 Model 1 Model 2
Variable Exp(B) Exp(B) 90% CI Exp(B) Exp(B) 90% CI
(Constant) 0.54 0.75 1.72 0.64
Service
Multiplicity 1.13 1.01 [0.78, 1.32] 1.04 1.08 [0.78, 1.49]
Continuity 0.32** 0.38*[0.18, 0.81] 0.29** 0.27*[0.12, 0.64]
Frequency 0.94 1.01 [0.72, 1.41] 1.22 1.31 [0.88, 1.94]
Responsiveness 0.97 0.90 [0.66, 1.24] 1.27 1.35 [0.91, 1.99]
Home-based 2.07 2.02 [0.81, 5.00] 1.78 1.83 [0.65, 5.15]
Covariates
Co-parenting 0.93 [0.34, 2.57] 1.25 [0.38, 4.05]
No. of other children 0.79 [0.54, 1.16] 0.71 [0.48, 1.05]
Educational attainment 1.11 [0.84, 1.46] 0.99 [0.73, 1.34]
Employment status 0.65 [0.40, 1.05] 0.80 [0.47, 1.37]
Household income 0.85 [0.72, 1.02] 1.00 [0.82, 1.23]
Child’s age 0.98 [0.90, 1.07] 1.01 [0.91, 1.11]
Child’s intellectual ability 0.83 [0.52, 1.33] 1.13 [0.65, 1.96]
Child’s disruptive behavior 2.06 [0.79, 5.36] 1.35 [0.52, 3.54]
Child’s language skills 1.40 [0.93, 2.11] 1.32 [0.84, 2.08]
Child’s adaptive behavior 1.61 [0.62, 4.16] 1.09 [0.39, 3.01]
Nagelkerke R20.178 0.277 0.138 0.186
Model chi square 16.79** 27.27*11.22*15.36
Note. Exp(B) = exponentiation of the B coefficient; CI = confidence interval.
* p < 0.05; ** p < 0.01.
88 Copyright © American Occupational Therapy Foundation
Had to Go, reflecting the lack of discretionary time
and mothers’ altered employment to accommodate
services, and (b) Lost Opportunity, reflecting moth-
ers’ feelings of sacrificing their employment aspira-
tions to accommodate services.
All nine mothers who worked part time and three of
the mothers who did not work in paid employment re-
ported that they wanted to work more than they were
currently able because of their child’s service needs.
For one mother, service needs were so intense that she
sold her lucrative personal business, in which she took
a lot of pleasure and pride, after close friends repeated-
ly expressed worries over her and her son’s well-being:
“[My friends] said, ‘You’re going to drop one day and
you’re going to be no good to you or your son.’”
Services continued to impact mothers’ workforce
participation even when their children were in school
or became young adults because of appointments
or programs that occurred during school or work
hours, because of the need to provide transportation
for their child during typical work hours, or because
they needed to accomplish other tasks during school
hours so they could be at home in the evenings for
out-of-school services. Although one mother was
happy to work part time when her 19-year-old son
was young, she was surprised at the lasting impact
that his need for transportation to his work training
program had on her ability to work: “I wanted to
work part time when he was younger…regardless
of his diagnosis. But without [his services], by this
point I would have been back working full time and
maybe be able to retire sooner.”
Many mothers discussed how they previously
saw themselves as professional women with aspira-
tions for career advancement, but involvement with
services changed the opportunity to “climb the cor-
porate ladder.” The following statement reflected
the sentiment of many of the mothers, who quit or
changed jobs to help balance life’s demands: “I had
to quit. I’ve always been in a managerial role. I loved
it, but it’s not something that you can come and go
from. I couldn’t manage.” Expanding on her reasons
for quitting work, one mother stated:
Between specialists and doctors and teachers and advo-
cating…it’s a lot of time and a lot of organization. There
is no way that it could all jive if I worked outside of the
home, because that is my job, to keep it all rolling and
keep the communication going from one pile to the next.
Impact of Professional Supports and Services on
Mothers’ Leisure Participation
Quantitative Results. There was also evidence
that involvement with professional supports and
services decreased mothers’ time to participate in
leisure occupations. Almost half of the survey re-
spondents reported disrupted leisure (48%; Table 2).
However, 62% of the mothers who responded to our
survey reported that they participated in both fam-
ily and individual (adult-oriented) leisure activities,
including reading, scrapbooking, running, walking,
going to the gym, watching television, and visiting
with friends. A further 23% of respondents indicated
that they did not participate in any individual or
Table 4
Zero-Order Correlation Matrix: Occupational Disruption and Autism Service Characteristics (n = 119)
1 2 3 4 5 6 7 8
Mean (SD)
or %
1. Disrupted employment 1.00 78%
2. Disrupted leisure 0.124 48%
3. Multiplicity 0.106 0.095 2.76 (1.87)
4. Frequency 0.118 0.009 0.553** 2.70 (1.41)
5. Continuity –0.207*–0.301** 0.197*0.233*0.00 (0.64)
6. Responsiveness –0.014 –0.152 0.177 0.161 0.495** 0.00 (1.28)
7. Receives home-based
services
0.141 0.161 0.505** 0.436** 0.115 0.091 48%
8. Receives occupational
therapy/speech pathology
0.045 –0.103 0.627** 0.652** 0.303** 0.192*0.412** 66%
9. Receives behavior support 0.059 –0.096 0.632** 0.339** 0.252** 0.073 0.461** 0.518** 48%
* p < 0.05; ** p < 0.01.
89
OTJR: Occupation, Participation and Health • Vol. 34, No. 2, 2014
adult-oriented leisure occupations but did partici-
pate in family-oriented leisure occupations, such as
going for walks, going to the park, or watching tele-
vision. Finally, 15% of our sample indicated they had
no participation in leisure occupations, with two
mothers responding, “Is this a joke?” to the question.
Similar to disrupted employment, only continuity
of services demonstrated a statistically significant ef-
fect on the likelihood of the mother reporting dis-
rupted leisure (Table 4). For every standard devia-
tion increase in perceived continuity of services, the
“risk” of reporting disrupted leisure decreased by a
factor of approximately 4.
Qualitative Results. On the questionnaire, moth-
ers identified the leisure occupations in which they
and their family participated, but we did not ask
about their frequency of participation or specifi-
cally how professional services disrupted leisure
participation. Our qualitative data suggest that our
questionnaire over-represented mothers’ leisure
participation. A different picture of the impact of
professional services on mothers’ leisure participa-
tion emerged when we asked mothers to expand on
their questionnaire answers during the interviews.
For example, one mother’s written answer said that
she participated in downhill skiing, but when asked
in the interview “How [she] found time for this ac-
tivity?,” she stated that she had “only gone once
since he was diagnosed 3 years ago! Now I don’t
even have time to go to [the local ski hill].”
Three themes emerged from our qualitative data,
suggesting that participation in services as they cur-
rently existed had both positive and negative effects
on the mothers’ ability to participate in meaningful
leisure occupations, with negative effects far out-
weighing positive effects (Table 5). Similar to em-
ployment, the first theme, Something Had to Go,
reflected the lack of discretionary time and mothers’
sacrificing their own leisure pursuits to accommo-
date services. The other themes—Work, Not Play
and Play, Not Work—reflected the impact of services
on family leisure occupations, including negative
and positive effects, respectively. Specifically, moth-
ers reported that services had a negative impact on
family leisure participation when discretionary time
was used for therapeutic activities rather than leisure
activities. Alternatively, services were reported to
have a positive impact on family leisure participa-
tion when therapeutic activities were incorporated
into enjoyable leisure occupations.
Mothers spent a significant amount of their free
time negotiating or involved in services. Four moth-
ers talked specifically about how time commitments
related to transportation and medical appointments
altered their discretionary time. For example, one
mother with an adult son stated, “We have seen, in
his life, 53 specialists! So, I haven’t had ‘me time’ in
29 years! With so much time off work, I work lots of
evenings. If there’s a rerun of a show, I go, ‘When
was that?’” Six mothers who received home-based
services discussed how services limited their discre-
tionary time and their ability to participate in “down-
time” occupations in the late afternoon and evening
hours. Instead, they used the time for “homework”
prescribed by professionals, or they had to remain
in the home when aides or other professionals were
present. Mothers also felt like they could not relax or
take time for themselves because of all the therapeu-
tic activities professionals said would benefit their
children, with three mothers expressing sentiments
such as “I’m an OT. I’m an SLP. I’m a psychologist.
I’m the community aide. I’m a teacher.” Mothers
also appreciated funding for multidisciplinary ser-
vices, but also believed it limited their ability to
participate in preferred occupations: “I’m lucky, I
have aides, but I can’t leave the house when they’re
Table 5
Core Process, Impact, and Themes
Core Process Occupation Impact Theme(s)
No. of
Interviews
No. of
Quotes
Occupational
imbalance and
sacrifice
Workforce
participation
Negative impact on
employment
Something Had to Go
Lost Opportunity
18 33
Leisure participation Negative impact on
personal leisure
Something Had to Go 15 22
Negative impact on family
leisure
Work, Not Play 13 16
Positive impact on family
leisure
Play, Not Work 4 4
90 Copyright © American Occupational Therapy Foundation
here. It’s silly. I sit on the computer. I’d rather go for
a walk, even with [my son with autism], but this is
what [services] lets me do.”
Alternatively, four mothers reported positive ben-
efits of professional services on their family leisure
participation when they participated in “therapeutic”
activities that did not feel like work because they in-
cluded the entire family and were integrated within
the context of “typical” family occupations. For exam-
ple, one mother felt exhausted by the perceived lack
of time for herself, yet talked about positive outcomes
for herself and her family when their occupational
therapist recommended a switch from a prescribed
“sensory diet to walks, the park, and she even had us
playing [the game] Twister®, which was a hoot!”
Discussion and Integration of Findings
These findings suggest that services intended to
help families may limit occupational balance for
many mothers, beyond limitations imposed by the
lived experience of parenting a child with autism.
Many mothers who participated in our study re-
ported they altered their own participation in mean-
ingful employment and leisure occupations more
than they would like to create the time they felt they
needed to research, access, navigate, and participate
in services for their child with autism. More than 10
years ago, Law (2002) stated that occupational thera-
pists “rarely look at occupational routine and overall
use of time”; yet, “how a person focuses his or her
time in order to participate is an important focus for
occupational therapy” (p. 646). Our data are not spe-
cific to occupational therapists but do suggest that
professionals and the system often lack sensitivity to
implications that clinical recommendations have on
the broader family and still foster a discrete model of
practice that is focused on specific areas of occupa-
tion for the child with autism, even in the context of
family-centered services.
The lack of uptake of a more global participation
approach may reflect misunderstanding around who
is the client in the context of family-centered services.
It may also reflect a lack of appreciation that the child
with autism functions within the context of his or her
family and that considering parents’ participation in
meaningful occupations may be one component of
family-centered services that could have collateral
benefits for the children. Finally, the “homework” de-
mands that some professionals place on mothers may
reflect naivety of the significant caregiving demands
of raising children, especially those with a diagnosis
of autism, regardless of the addition of professional
services. The mothers who participated in this study
wanted increased participation in employment and/
or leisure occupations but reported that service de-
mands decreased the discretionary time required
for these activities. Although fewer services could
adversely result in decreased therapeutic benefits to
the child, these data locate current child resources as
largely dependent on maternal implementation. This
dependence on mothers’ care despite the personal
costs on mothers is a detriment of current care deliv-
ery models for many families.
Even after adjusting for other potentially contrib-
uting variables, we found significant relationships
between continuity of services and mothers’ partici-
pation in both employment and leisure occupations.
Specifically, mothers who reported less continuity of
services also reported less employment and leisure
participation. Although our quantitative data demon-
strated little association between disrupted employ-
ment and disrupted leisure, suggesting that a lack of
continuity of services will decrease mothers’ ability to
participate in meaningful occupations in one way or
another, our qualitative data suggested that participa-
tion in both kinds of occupations often decreases.
We were not surprised that continuity of care, or
lack thereof, predicted participation. However, we
were surprised that the responsiveness of practitio-
ners, an indicator of the provision of family-centered
services, did not predict participation. There is a lot of
dialogue about family-centered care in the province in
which this study took place, and mothers consistent-
ly reported that service providers and practitioners
were responsive to their needs and values. Therefore,
it is not that the provision of family-centered services
is recognized as not important, but rather that our
data showed little variability in scores and realization
of family-centered care. These findings reinforce how
strongly systemic challenges can influence mothers’
participation, even when individual services are re-
sponsive to their needs and values.
Limitations
This study did not include a control group. As
such, we focused on correlates of disrupted employ-
ment and leisure participation. The survey questions
did not provide a complete picture of the impact of
professional services on leisure time because they did
not ask specifically about how services impacted lei-
sure participation including frequency. Therefore, the
mixed-methods approach in this study was critical
in capturing the nuances of mothers’ experiences in
this regard. We also did not ask about psychosocial
support from family or friends, which is positively
associated with participation (Law, 2002), nor did we
91
OTJR: Occupation, Participation and Health • Vol. 34, No. 2, 2014
gather information on cultural background, which
may also influence maternal role expectations. Fu-
ture research would benefit from a more systematic
approach to capturing this information. For example,
by incorporating formal measures of life balance into
future research, such as the Life Balance Inventory
(Matuska, 2012a, 2012b), one could provide more de-
tailed information about the impact of services on the
various constructs that comprise life balance. A life of
maternal caregiving is not of less value than paid em-
ployment; yet, our sample was biased toward moth-
ers who expressed a desire for more paid employ-
ment. Talking with mothers of children with autism
who feel occupationally balanced in the context of
participation in professional services, including those
who do and do not work in paid employment, is an
important direction for future research. A final limita-
tion in this study is the potential that other variables
predict mothers’ participation but were not included
in our regression analysis.
Conclusion and Clinical Implications
The relationship between participation, occu-
pational balance, and well-being is complex (Rizk
et al., 2011). As such, there are no simple solutions
related to health services that will ensure improved
well-being for mothers and their families. We are not
advocating for a decrease or elimination of services
for families of children with autism. Rather, we ad-
vocate for policies and practices that better support
these mothers to achieve occupational balance in the
context of family-centered services.
Although substantial time and effort are gener-
ally required for systems-level change, occupational
therapists can play an important role in advocating
for decreased fragmentation of services across ser-
vice providers and over time. They can also advo-
cate for employment policies that are more accom-
modating of service needs (i.e., providing sufficient
leave to attend appointments) and the provision of
services at times that might improve mothers’ abili-
ties to participate in their desired occupations (i.e.,
opening clinics during evenings or on weekends).
More immediately, professionals should consider
mothers’ participation in the context of child-focused
intervention planning (Gevir, Goldstand, Weintraub,
& Parush, 2006). Strategies to help mothers and their
families balance their time and derive satisfaction
from daily activities would likely help decrease ma-
ternal burnout, improve self-identify and self-esteem,
and increase satisfaction of daily activities and time
use (Gevir et al., 2006; McGuire et al., 2004). The
mothers we interviewed discussed current practices
that put “therapeutic” expectations on mothers, de-
creasing their already limited discretionary time for
participation in meaningful family or individual oc-
cupations. Like everyone, participating in “typical”
family activities and routines is important for chil-
dren diagnosed with autism and their mothers (Goin-
Kochel et al., 2007). These strategies do not require the
creation of new interventions; rather, recommending
meaningful “therapeutic” activities that occur within
the context of daily life can improve children’s skills
and mothers’ sense of competence and decrease oc-
cupational imbalance (Dunn, Cox, Foster, Mische-
Lawson, & Tanquary, 2012).
Occupational therapists can play a valuable role
in advancing family-centered practices and policies
for families with a child diagnosed with autism. It is
within the scope of knowledge and practice for oc-
cupational therapists to educate other professionals
and policy makers on the potential benefits of oc-
cupational balance and to encourage services that
directly and indirectly support, rather than burden,
mothers of children with autism.
References
Adair, C.E., Wild, T.C., Joyce, A., McDougall, G., Gordon, A.,
Costigan, N.,…Lu, M. (2001). Alberta Continuity of Services
Scale for Mental Health (ACSS-MH). Continuity of Mental
Health Services Study of Alberta: Research Program on Continuity
of Mental Health Care. Unpublished survey.
Baker, D.L., & Drapela, L.A. (2010). Mostly the mother:
Concentration of adverse employment effects on mothers of
children with autism. The Social Science Journal, 47, 578-592.
Bourke-Taylor, H., Howie, L., & Law, M. (2010). Impact of car-
ing for a school-aged child with a disability: Understanding
mothers’ perspectives. Australian Occupational Therapy Journal,
57, 127-136. doi:10.1111/j.1440-1630.2009.00817.x
Craig, L., & Bittman, M. (2008). The incremental time costs
of children: An analysis of children’s impact on adult
time use in Australia. Feminist Economics, 14, 59-88.
doi:10.1080/13545700701880999
Creswell, J.W., & Plano Clark, V.L. (2011). Designing and conduct-
ing mixed methods research (2nd ed.). Thousand Oaks, CA: Sage.
Crowe, T.K., & Michael, H.J. (2011). Time use of mothers
with adolescents: A lasting impact of a child’s disabili-
ty. OTJR: Occupation, Participation and Health, 31, 118-126.
doi:10.3928/15394492-20100722-01
Donovan, J.M., VanLeit, B.J., Crowe, T.K., & Keefe, E.B. (2005).
Occupational goals of mothers of children with disabili-
ties: Influence of temporal, social, and emotional contexts.
American Journal of Occupational Therapy, 59, 249-261.
Dunn, W., Cox, J., Foster, L., Mische-Lawson, L., & Tanquary, J.
(2012). Impact of a contextual intervention on child partici-
pation and parent competence among children with autism
spectrum disorders: A pretest-posttest repeated-measures
design. American Journal of Occupational Therapy, 66, 520-528.
doi:10.5014/ajot.2012.004119
Gevir, D., Goldstand, S., Weintraub, N., & Parush, S. (2006). A
comparison of time use between mothers of children with
92 Copyright © American Occupational Therapy Foundation
and without disabilities. OTJR: Occupation, Participation and
Health, 26, 117-127.
Goin-Kochel, R.P., Myers, B.J., & Mackintosh, V.H. (2007). Parental
reports on the use of treatments and therapies for children
with autism spectrum disorders. Research in Autism Spectrum
Disorders, 1, 195-209.
Gordon, M., Rosenman, L., & Cuskelly, M. (2007). Constrained
labour: Maternal employment when children have disabili-
ties. Journal of Applied Research in Intellectual Disabilities, 20,
236-246. doi:10.1111/j.1468-3148.2006.00325.x
Green, V.A., Pituch, K.A., Itchon, J., Choi, A., O’Reilly, M., &
Sigafoos, J. (2006). Internet survey of treatments used by
parents of children with autism. Research in Developmental
Disabilities, 27, 70-84.
Hodgetts, S., Nicholas, D., Zwaigenbaum, L., & McConnell, D.
(2013). Parents’ and professionals’ perceptions of family-
centered care for children with autism spectrum disorder
across service sectors. Social Science & Medicine, 96, 138-146.
doi:10.1016/j.socscimed.2013.07.012
King, S., King, G., & Rosenbaum, P. (2004). Evaluating health
service delivery to children with chronic conditions and their
families: Development of a refined Measure of Processes of
Care (MPOC-20). Children’s Health Care, 33, 35-57. doi:10.1207/
s15326888chc3301_3
Law, M. (2002). Participation in the occupations of everyday life.
American Journal of Occupational Therapy, 56, 640-649.
Little, R.J.A., & Rubin, D.B. (1987). Statistical analysis with missing
data. New York: Wiley and Sons.
Matuska, K. (2012a). Description and development of the Life
Balance Inventory. OTJR: Occupation, Participation and Health,
32, 220-228. doi:10.3928/15394492-20110610-01
Matuska, K. (2012b). Validity evidence of a model and measure
of life balance. OTJR: Occupation, Participation and Health, 32,
229-237. doi:10.3928/15394492-20110610-02
Matuska, K., & Barrett, K. (2014). Patterns of occupation. In
B.A. Boyt Schell, G. Gillen, & M.E. Scaffa (Eds.), Willard
& Spackman’s occupational therapy (12th ed., pp. 163-172).
Philadelphia: Lippincott Williams & Wilkins.
McCann, D., Bull, R., & Winzenberg, R. (2012). The daily pat-
terns of time use for parents of children with complex needs:
A systematic review. Journal of Child Health Care, 16, 26-52.
doi:10.1177/1367493511420186
McGuire, B.K., Crowe, T.K., Law, M., & VanLeit, B. (2004). Mothers
of children with disabilities: Occupational concerns and solu-
tions. OTJR: Occupation, Participation and Health, 24, 54-63.
Remple, G., Rogers, L., & Majnemer, A. (2010). Education
and Rehabilitation Services Questionnaire. Adapted from:
Majnemer, A. (2008). Service utilization telephone survey.
As cited in: Majnemer, A., Mazer, B., Lecker, E., Leduc
Carter, A., Limperopoulos, C., Shevell, M.,...Tchervenkov, C.
(2008). Patterns of use of educational and rehabilitation ser-
vices at school age for children with congenitally malformed
hearts. Cardiology in the Young, 18, 288-296. doi:10.1017/
S1047951108002114
Rizk, S., Pizur-Barnekow, K., & Darragh, A.R. (2011). Leisure and
social participation and health-related quality of life in care-
givers of children with autism. OTJR: Occupation, Participation
and Health, 31, 164-171. doi:10.3928/15394492-20110415-01
Schreiber, J.B., Nora, A., Stage, F.K., Barlow, E.A., & King, J.
(2006). Reporting structural equation modeling and confirma-
tory factor analysis results: A review. The Journal of Educational
Research, 99, 323-338. doi:10.3200/JOER.99.6.323-338
Stein, L.I., Foran, A.C., & Cermak, S. (2011). Occupational pat-
terns of parents of children with autism spectrum disorder:
Revisiting Matuska and Christiansen’s model of lifestyle bal-
ance. Journal of Occupational Science, 18, 115-130.
Strauss, A., & Corbin, J. (1998). Basics of qualitative research:
Grounded theory procedures and techniques (2nd ed.). Thousand
Oaks, CA: Sage.
Tunali, B., & Power, T.G. (2002). Coping by redefinition: Cognitive
appraisals in mothers of children with autism and children
without autism. Journal of Autism and Developmental Disorders,
32, 25-34.
VanLeit, B., & Crowe, T.K. (2002). Outcomes of an occupational
therapy program for mothers of children with disabilities:
Impact on satisfaction with time use and occupational
performance. American Journal of Occupational Therapy, 56,
402-410.
Wilcock, A.A. (2006). An occupational perspective of health (2nd ed.).
Thorofare, NJ: SLACK Incorporated.
Woodside, J.M., Rosenbaum, P.L., King, S.M., & King, G.A.
(2001). Family-centered service: Developing and validating a
self-assessment tool for pediatric service providers. Children’s
Health Care, 30, 237-252. doi:10.1207/S15326888CHC3003_5
OTJR: Occupation, Participation and Health • Vol. 34, No. 2, 2014
Appendix A
Confirmatory Factor Analysis: Final Items
Continuity: ACSS scored 1 (strongly disagree) to 5 (strongly agree), r = reverse scored
COS1 I’ve had to repeat my child’s history every time we need help (r)
COS2 I have to deal with a confusing number of agencies and programs (r)
COS8 There don’t seem to be links from one service to the next (r)
COS13 My child’s records never seem to be available to new providers we see (r)
COS10 Some services my child or family needs are just not out there (r)
COS14 Those involved in my child’s care don’t seem to talk with each other (r)
COS6 There is no single place to find out about all services available (r)
COS15 Everyone seems to work together for my child or family
Responsiveness: MPOC-20 scored 1 (not at all) to 7 (to a very great extent)
Stem: In the past year, to what extent do the people who work with your child...
MPOC4 let you choose when to receive information and the type of information you want?
MPOC7 fully explain treatment choices to you?
MPOC8 provide opportunities for you to make decisions about treatment?
MPOC2 provide you with written information about what your child is doing in therapy?
MPOC14 provide you with written information about your child’s progress?
MPOC15 tell you about the results from assessments?
MPOC5 look at the needs of your “whole” child (e.g., at mental, emotional, and social needs)?
MPOC6 make sure that at least one team member is someone who works with you and your family over a long period?
MPOC10 plan together so they are all working in the same direction?
MPOC12 give you information about your child that is consistent from person to person?
MPOC1 help you to feel competent as a parent?
MPOC3 provide a caring atmosphere rather than just give you information?
MPOC9 provide enough time to talk so you don’t feel rushed?
MPOC11 treat you as an equal rather than just as the parent of a patient (e.g., by not referring to you as Mom or Dad)?
MPOC13 treat you as an individual rather than as a “typical” parent of a child with a disability?
Note. ACSS = Alberta Continuity of Services Scale for Mental Health; COS = continuity of services; MPOC-20 = Measure of Processes of Care.
