Journal of Occupational Science

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Occupational performance goals of mothers

of adolescents with disabilities and mothers of
adolescents with typical development

Terry K. Crowe, Susanne W. Duvall & Julie A. Gutierrez

To cite this article: Terry K. Crowe, Susanne W. Duvall & Julie A. Gutierrez (2016):
Occupational performance goals of mothers of adolescents with disabilities and
mothers of adolescents with typical development, Journal of Occupational Science, DOI:
10.1080/14427591.2016.1172494

To link to this article: http://dx.doi.org/10.1080/14427591.2016.1172494

Published online: 21 Apr 2016.

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 JOURNAL OF OCCUPATIONAL SCIENCE, 2016
http://dx.doi.org/10.1080/14427591.2016.1172494

Occupational performance goals of mothers of adolescents with

disabilities and mothers of adolescents with typical development
Terry K. Crowea, Susanne W. Duvallb & Julie A. Gutierreza
a
University of New Mexico, Division of Occupational Therapy, Albuquerque, New Mexico, USA; bInstitute on
Development & Disability, Oregon Health & Science University, Portland, Oregon, USA
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ABSTRACT ARTICLE HISTORY

This mixed methods study describes the occupational performance goals Accepted 15 March 2016
of mothers of adolescents with disabilities and mothers of typically
developing adolescents. A sample of 40 mothers was recruited, 20 KEYWORDS:
occupation; participation;
mothers of typically developing adolescents and 20 mothers of mothering; occupational
adolescents with disabilities. Semi-structured interviews guided by the performance goals; youth;
Canadian Occupational Performance Measure were used to gather disability
descriptive data from the mothers. The data were then qualitatively
analyzed, compared, and organized into six themes describing the
mothers’ occupational performance goals. The six themes were Taking
Care of Myself, Making Time for Own Occupations, Life Organization,
Quality Time with Others, Sharing the Load, Supporting/Encouraging
Adolescent Development. Five of the six themes were shared between
both groups. The final theme was only evident in the group of mothers
of adolescents with disabilities. The findings highlight the differences
and similarities of occupational performance goals between mothers of
typically developing adolescents and mothers of adolescents with
disabilities. While similarities existed between the two groups, it is
important to understand the different life experiences of mothers of
adolescents with disabilities to better support them in their daily
occupations.

Mothering is a fundamental occupational role for
many women, which enables the passing down of
family values, morals, and beliefs across gener-
ations. Donovan, VanLeit, Crowe, and Keefe
(2005) referred to mothering as “the thread that
sews human evolution forward into an imagin-
able future” (p. 249). Similarly, Larson (2000a)
described mothering as the medium through
which society is perpetuated through time.
Through a lifelong commitment and endeavor,
mothering occupations foster the next gener-
ation, may fulfill an important role, and establish
the foundation for their future sociocultural con-
text. In addition to caring for children, mothers
also engage in a variety of occupational endeavors
which can improve their quality of life, enhance
health and provide fulfillment (Gribble & Brem-
ner, 2012; Larson, 2000a).
The needs of children change over time as
they develop new skills and occupations. This
can alter the act of mothering and may have
an impact on mothers’ own occupations. The
World Health Organization (WHO, 2014)
hinted at the extent of that impact in describing
adolescence (13–19 years of age) as a dynamic
time period that is marked by social, emotional,
and physical development that can contribute to
the health and future outcomes of youth as
they transition into adulthood. According to
Engel-Yeger, Jarus, Anaby and Law (2009),

CONTACT Terry K. Crowe tcrowe@salud.unm.edu; Susanne W. Duvall duvall@ohsu.edu;

Julie A. Gutierrez gutierrezj1988@gmail.com
© 2016 The Journal of Occupational Science Incorporated
 2 T. K. CROWE, S. W. DUVALL & J. A. GUTIERREZ
participation in meaningful occupations can
nurture this process, and lead to well-being
and life satisfaction. Adolescent education,
health, and opportunities to build essential skills,
with the support of family and society, can influ-
ence the foundation for adolescents’ futures, as
well as for society’s future economic status
(Gribble & Bremner, 2012; The World Bank,
2006). For typically developing adolescents in
Western contexts, this time period usually
involves increased autonomy, the progression
of puberty, transition from school or home to
work or higher level education, and assuming
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adult responsibilities (Sawyer et al., 2012). This
increase in independent living skills resulting
in new occupations may provide the opportunity
for increased time and space for mothers of ado-
lescents to pursue their own occupations.
However, this trajectory of increased indepen-
dent skills and time spent away from parents in
adolescents with typical development is not always
parreleled in adolescents with disabilities (Tonkin,
Ogilvie, Greenwood, Law, & Anaby, 2014). Com-
pared to children and adolescents with typical
development, those with disabilities had partici-
pation restrictions leading to fewer occupations
(especially formalized and intensive occupations)
with functional ability having the greatest impact
on participation (King, Petrenchik, Law, & Hurley,
2009; Livingston, Stewart, Rosenbaum, & Russell,
2011; Tonkin et al., 2014). The independent occu-
pational functioning of adolescents with and with-
out disabilities may have an impact on mothers’
occupations. As adolescents with disabilities may
not reach developmental milestones and develop
new occupations (Suris, Michaud, & Viner,
2004), and the discrepancies in functional abilities
between adolescents with and without disabilities
may be more distinguishable than during child-
hood (Koch & Mayes, 2012; Schneider, Wedge-
wood, Llewellyn, & McConnell, 2006), this study
focused on mothers of adolescents.
Responsibilities in mothers of
adolescents with disabilities and
mothers of typically developing
adolescents
Mothering is a lifelong commitment that
involves juggling various roles and responsibil-
ities (Dunbar & Roberts, 2006; Larson, 2000b),
which can influence a mother’s occupational
choices, goals, and well-being (Chasteen &
Kissman, 2000; Crowe & Michael, 2011). The
time demands associated with childcare typically
decrease as children enter adolescence and
become more independent, granting mothers
more opportunities to participate in occupations
of their own choice (Crowe & Florez, 2006;
Crowe & Michael, 2011; Phares, Fields, &
Kamboukos, 2009). Crowe and Michael (2011)
reported that mothers of typically developing
adolescents spent less time supervising their
adolescents and more time participating in social
occupations, in contrast to mothers of adoles-
cents with disabilities.
In their qualitative study, Dunbar and
Roberts (2006) described the maternal experi-
ences of seven mothers of typically developing
adolescents including maternal occupations
and responsibilities, the emotional experiences
associated with mothering and management of
various roles. They also noted the importance
of providing family-centered care, supports,
and services to mothers of typically developing
adolescents, to assist mothers in managing
their roles, responsibilities, and occupational
participation (Dunbar & Roberts, 2006).
In contrast, Larson (2000b) described the
occupational processes of mothering a child
with a disability as the “orchestration of occu-
pation” because it involves managing various
roles and occupations in a manner to create bal-
ance and well-being. Unlike mothering of typi-
cally developing adolescents, raising an
adolescent with a disability is associated with
greater temporal demands in direct childcare
occupations that may endure longer, and
become increasingly more difficult as the child
grows physically (Crowe & Florez, 2006; Crowe
& Michael, 2011; Schneider et al., 2006). Accord-
ing to Todd and Jones (2005), the dynamic
nature of raising an adolescent with a disability
usually coincides with Western mothers’ “mid-
life” phase. This phase can be viewed as a turning
point (emotionally, physically, and socially) for
mothers that is associated with changes in self-
identity, realization of “lost” future goals due
to the lifelong occupation of raising a child
with a disability, declining health, and a loss of
supports, such as other children leaving home
and termination of services. The protracted

childcare demands can limit participation in
occupations outside of caregiving, such as self-
care, socialization, work, and returning to school
(Bourke-Taylor, Howie, & Law, 2010; Donovan
et al., 2005; Peters & Jackson, 2009; Todd &
Jones, 2005), and can impact overall well-being.
In a qualitative study with children with dis-
abilities aged 3 to 13 years, Donovan et al. (2005)
described mothers’ occupational goals using the
Canadian Occupational Performance Measure
(COPM) (Law et al., 2005). These goals included
setting aside time for themselves, socializing,
caring for their children, fulfilling housekeeping
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responsibilities, managing their various roles
(e.g., worker, housekeeper, community mem-
ber), and establishing dependable childcare.
These goals may continue to be of importance
to mothers as their children transition into ado-
lescence, and through the teenage years.
The aim of the current study is to describe the
occupational performance goals of mothers of
adolescents with disabilities, compared to the
goals of mothers with adolescents with typical
development, to better understand and support
mothers in participating in occupations that
they need to do, want to do, and are expected
to do. The research questions used to guide
this study are: (1) What are the main themes
of occupational performance goals of mothers
of adolescents with disabilities in comparison
to mothers of adolescents without disabilities?
and (2) Is there a difference in the occupational
performance goals expressed by mothers of ado-
lescents with disabilities in comparison to
mothers of adolescents without disabilities?
Methods
This study was part of a larger mixed methods
study of the time use of mothers with adoles-
cents (Crowe & Michael, 2011). Because the
intent of this study was to compare the occu-
pational performance goals of mothers of ado-
lescents with disabilities and those with
typically developing adolescents, attention was
given to the number of data units generated by
each group of mothers, and statistical analysis
of the demographic variables of both groups of
mothers was conducted. Conventional qualitat-
ive content analysis (Hsiah & Shannon, 2005)
was used to develop themes from data collected
JOURNAL OF OCCUPATIONAL SCIENCE 3
using the COPM (Law et al., 2005). The Univer-
sity of New Mexico Human Research Review
Committee approved the study.
Sampling and recruitment
A sample of 20 mothers of adolescents with dis-
abilities and 20 mothers of adolescents with typi-
cal development was recruited through flyers
posted throughout the community, referrals
from participants (snowballing), internet list-
servs, parent advocacy groups, schools, and indi-
viduals known to the researchers through their
professional roles. Inclusion criteria for mothers
of adolescents with developmental disabilities
(DD Group) were that the adolescents had to
be between 13 and 19 years of age and identified
by the mother as having a disability based on the
adolescent having difficulty in at least three of
the following occupations: mobility, eating, toi-
leting, communication, leisure activities, time
alone and money skills. Inclusion criteria for
the mothers of adolescents with typical develop-
ment (TD Group) were that the adolescents had
to be between 13 and 19 years of age, identified
by the mother as having no difficulties at birth
and no developmental concerns in the past or
at the time of this study, and there were no sib-
lings with disabilities in the family. After the
completion of the original study an additional
11 women were recruited from flyers posted
around the community or by word of mouth
to participate in two maternal focus groups
(one DD and one TD group) to give feedback
on the themes developed from the interviews
of the 40 original participants.
Data collection
The first author used a screening checklist for
qualifying the original 40 participants, and
then an appointment was arranged at a location
chosen by the mother (home or community
location). During the visit, the mothers signed
a consent form and completed the Demographic
Background Questionnaire, which included
their age, education, ethnicity, marital status
and hours worked per week, the age of the ado-
lescent, and the number and ages of other chil-
dren in the family. The mothers were then
trained to complete a time use instrument
 4 T. K. CROWE, S. W. DUVALL & J. A. GUTIERREZ

(reported in Crowe & Michael, 2011) and finally Measures

the COPM was administered. The visit was
The COPM (Law et al., 2005) is an assessment
approximately 1.5 to 2 hours long and mothers
that is administered in a semi-structured inter-
were compensated for their time. This article
view format. It was used by having the 40 orig-
focuses on the data gathered through the COPM.
inally recruited mothers identify and prioritize
Data were collected by the first author and
their occupational performance issues with
nine graduate students through individual inter-
everyday occupations, such as self-care, pro-
views. During the interview, which focused on
ductivity, and leisure, based on perception of
occupational goal creation and took approxi-
their abilities to complete the tasks and their
mately 30 minutes to complete, live transcrip-
level of satisfaction. Difficulty with performing
tion was used as the data collectors wrote
various occupations is referred to as occu-
down the goals word for word as they were pro-
pational performance problems by the COPM
vided by the participants. To ensure consistency
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authors. For the sake of this study, we refer to

of administration of the COPM, prior to data
them as occupational performance goals.
collection the students were trained in its admin-
The utility, reliability, and validity of the
istration by the first author. Students had to
COPM have been assessed extensively. Several
achieve 95% agreement or higher before con-
studies have confirmed the feasibility of using
ducting interviews. The first author conducted
the COPM in practice, in which it has been
procedural checks on every first visit and every
described as simple, useful, comprehensive,
fifth visit, totaling 14 checks across the 40 par-
and purposeful (Dedding, Cardol, Eyssen,
ticipants. Data collectors achieved an average
Dekker, & Beelen, 2004; Eyssen et al., 2011;
of 96% agreement.
McColl, Paterson, Davies, Doubt, & Law, 2000;
Focus groups were conducted with the separ-
Verkerk, Wolf, Louwers, Meester-Delver, & Nol-
ate sample of 11 women who met on a weekday
let, 2006). Strong test-retest reliability scores
evening on campus after the initial data analysis
have been consistently found (.76 -.89) (Cup,
was completed. The groups were facilitated
Scholte op Reimer, Thijssen, & van Kuyk-
using a focus group guide. Open-ended questions
Minis, 2003; Kjeken et al., 2005; Sakzewski,
were utilized to elicit the most information poss-
Boyd, & Ziviani, 2007).
ible, with an emphasis on listening and learning
Other psychometric qualities of the COPM,
from the participants. The focus groups were
including convergent validity, construct and cri-
intended to act as a validity check to ensure that
terion validity, have also been documented (Cup
the derived themes from the original groups
et al., 2003; Dedding et al., 2004; Eyssen et al.,
thoroughly and accurately captured the occu-
2011; McColl et al., 2000; Verkerk et al., 2006).
pational performance goals of the focus group
In a literature review, Carswell et al. (2004)
participants. Both the DD and TD focus groups
reported that the reliability, validity, and respon-
were asked about their own goals and if the
siveness consistently ranged from satisfactory to
themes that had previously been developed ade-
excellent, and that the COPM is a useful and
quately encompassed their own occupational
effective measure. Additionally, similar qualitat-
performance goals. Reflection upon the compre-
ive exploration of the COPM has been com-
hensiveness of the previously developed themes
pleted previously in the literature in a variety
was encouraged and discussion and interactions
of populations (Atwal, Owen, & Davies, 2003;
were facilitated and observed between group
Doig, Fleming, Cornwell, & Kuipers, 2009;
members. The group process allowed partici-
Donovan, et al., 2005).
pants to expand upon the original themes. The
two focus groups were audiotaped to ensure accu-
racy. The recordings were then independently
Data analysis
reviewed by the first and second authors to ensure
that the participants agreed with the themes and Statistical analysis (t tests) compared the demo-
to document any discrepancies or expansions. graphic variables: mother’s age and education
After the 1.5 to 2 hours long focus group, partici- level, and adolescent ages and gender between
pants were compensated for their time. the two groups. There were minor differences
 JOURNAL OF OCCUPATIONAL SCIENCE 5

in maternal work hours, and ethnicity with more
mothers in the DD Group identifying as multi-
ethnic, but no other differences in demographic
variables were found between the two groups.
All the mothers were married.
Qualitative data collected from the 40
mothers were analysed utilizing thematic coding
and techniques of clustering and collapsing
(Sandelowski, 2000; Sandelowski & Barroso,
2003) to identify patterns across the entire
COPM dataset. Narrative information about
occupational performance goals for the DD
and TD groups were then compared. All
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discrepancies were easily resolved through dis-
cussion and consensus coding into the six
themes. On a separate occasion, this same pro-
cess was completed independently for the TD
Group by the same researchers. As the data
were collapsed into superordinate themes, five
themes emerged which allowed closed coding
and captured the variance and meaning of all
of the data units. The independent yet parallel
analyses of the researchers produced similar out-
comes, with only 3 data units (2.4%) of the TD
sample being inconsistent. Consensus coding
was again utilized to resolve these minor

responses obtained from the COPM were tran- discrepancies.

scribed exactly as written by the interviewers
and divided into units of data by sentence clus-
Results
ters. A total of 167 data units were transcribed
for the DD Group and 126 data units were tran- The demographic profile of the mothers who par-
scribed for the TD Group. Thus, a total of 293 ticipated in the semi-structured interviews is out-
data units were collected from the 40 COPMs. lined in Table 1. The DD Group comprised
Two researchers (first and second authors) con- mothers of 9 girls and 11 boys, with a mean age
ducted parallel yet independent analyses of the of 14.9 years (SD = 1.9). The adolescents’ disabil-
COPM occupational performance goals for the ities as reported by the mothers included multiple
DD Group. They explicitly acknowledged that disabilities (10), autism spectrum disorder (4),
the themes could be similar or different between Down syndrome (3), cerebral palsy (2), and Pra-
the groups and proceeded with open coding with der-Willi syndrome (1). The TD group com-
a hypothetical framework. prised mothers of 12 girls and 8 boys, with a
First, the data from the DD Group were col- mean age of 15.3 years (SD = 1.7).
lapsed into six superordinate themes, which cap- Six additional women (ages 39 to 56 years,
tured the variance and meaning of all the data mean age of 48.2) with adolescents with disabil-
units with only 4 data units (2.45% of the ities participated in a focus group. The ages of
sample) being inconsistent. The few the adolescents ranged from 14 to 18 years of
age with a mean age of 16.7 years. Adolescents’
Table 1. Demographic characteristics of participants diagnoses included cerebral palsy, Down syn-
Disability Typically drome, autism spectrum disorder, attention defi-
Group Developing cit disorder with oppositional defiance disorder
(n=20) Group (n=20)
and depression, and developmental delay. Five
Maternal Age (years) 43.8 (6.3) 44.2 (6.4)
means (standard deviation)
more women (ages 42 to 57 years, mean age of
Maternal Education (years) 15.6 (1.1) 16.2 (3.1) 49.7) with typically developing adolescents aged
means (standard deviation) 14 to 18 years, with a mean age of 16.0 years, par-
Maternal Work (# of women)
Not working (0–5 hours/week) 7 5
ticipated in the other focus group. All women in
Part-time (6–34 hours/week) 9 11 both groups had at least one year of college, and
Full-time (35–50 hours/week) 4 4 three were working toward completing a Master’s
Maternal Ethnicity
(No. of women)
degree. The women in the focus groups were
Anglo/White 9 13 slightly older than the original sample but the
Mexican/Mexican American 5 6 ages of the adolescents were similar.
Native American/Indian 1 0
Asian American 0 1
Six themes that described the occupational
Other 5 0 performance goals of mothers of adolescents
Age of Siblings (years) 12.4 (4), 11.4 (3.6), 4–16 were drawn from the data, five of which were
means (standard deviation), 6–20
range
shared by both groups. The last theme was
identified only by the DD Group. The italicized
 6 T. K. CROWE, S. W. DUVALL & J. A. GUTIERREZ
goals listed within each theme were drawn
directly from the COPM data. Figures 1 and 2
summarize the themes and subthemes, as well
as the number of times the mothers identified
goals categorized into the subthemes during
the interviews, which may reflect the relative
importance of certain occupational performance
goals with the groups.
Theme 1: Taking care of myself
The first theme included occupational perform-
ance goals that would maintain or improve the
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mothers’ overall health. The TD Group described
taking care of themselves through occupations
such as exercise and other healthy behaviors to
maintain their weight, discretionary self-care,
and creating time for themselves. Lawton (1978)
defined discretionary occupations as those that
enable more selectivity, which can include rest
or not doing anything. Goals identified included:
walk 3–4 times a week; eat balanced break-
fast and dinner daily; want 2 hours a week
to leisure shop alone; allocate more time for
getting ready in the morning; would like a
haircut every 4 weeks; want 2 hours a
week to relax by myself.
The DD Group also described taking care of
themselves through similar occupations. How-
ever, they also identified many goals related to
basic self-care activities and sleep, goals that
were not present in the responses of the TD
Group. Lawton (1978) described basic or obliga-
tory occupations as those required to maintain
the self. Goals such as sleeping at least 8 hours
a night and going to bed by 10pm to have a mini-
mum of 8 hours of sleep were expressed by the
DD Group, but were not mentioned in the typi-
cally developing group. Overall, the DD Group
discussed goals related to taking care of them-
selves more frequently. Examples of goals were:
have some days to walk alone for stress
relief; want to work out [at the gym];
take time to fix healthy meals for self;
dress nicer on a daily basis; want to shop
for self and not feel guilty; find time for
myself; taking a bath regularly, using the
bathroom without interruptions; taking
care of dental work.
Theme 2: Making time for own
occupations
Mothers expressed interest in finding and partici-
pating more in leisure occupations of their own. A
trend throughout this theme was a desire to con-
tinue to further improve their skills and abilities.
The various occupations identified by the mothers
in both groups were categorized into four subca-
tegories: traveling (alone), education, job/volun-
teer, and hobbies. Some examples of desired
leisure occupations for the TD Group were:
establish one vacation/retreat per year
alone; go to school and get a degree; nice
to have free time for volunteering; find
employment in the community; more flexi-
bility in work schedule to integrate chil-
dren’s activities; bake 2 times a week;
read a book a couple times a week.
The DD Group also identified goals within the
four subcategories, but identified more of them,
particularly in relation to education and indepen-
dent traveling. While the TD Group expressed
interest in finding and participating more in vol-
unteer and work opportunities outside of the
home, four mothers of the DD Group wanted
to relinquish their work role. Examples of leisure
goals identified by the DD Group included:
plan a vacation for myself within the next
year; get bachelor’s degree in business
administration; take fun classes not for a
degree (i.e. sign language, writing, etc);
stop working outside home/be a stay-at-
home mom; volunteer for 10 hours a
month; finding more time to read books.
Theme 3: Life organization
The third theme, managing a household effec-
tively and efficiently, was divided further into
three subcategories: chores, organization, and
finance. The goals described by both groups
were similar, and seemed to center on having
more time to keep up with the demands of
everyday life tasks. In order to achieve better
life organization, the TD Group described:
would like to have several cleaned (2–3)
rooms in the house; would like to cook

Figure 1. Themes, subthemes, and number of items identified within subthemes for mothers of typically developing adolescents
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(td group)
healthy meals without being rushed; laun-
dry done more often so pile is not so
large; plan a weekly menu and shopping
list; would like to have an advisor monthly
about expenses.
Examples of goals of the DD Group included:
want to stick to daily schedule better; want
to clean once a week; prioritize grocery
shopping; cook balanced meals at home
3–4 times a week; make more time to get
things done; get rid of things not needed;
learn better money management skills.
Theme 4: Quality time with others
The TD Group identified wanting to spend
quality time with friends, family, and
extended family. This theme demonstrates
the desire for meaningful interactions with
Figure 2. Themes, subthemes, and number of items identified within subthemes for mothers of adolescents with a disability (dd
group)
JOURNAL OF OCCUPATIONAL SCIENCE 7
other people, ranging from making new con-
nections to sustaining relationships with
friends and family. Examples of goals of the
TD Group included:
want 2 hours a month to leisure shop with
friends and girlfriends; would like to take
part in group bible study once a week;
would like to plan and have a family
vacation within the year; spend once a
week with extended family.
The DD Group identified goals for spending
quality time with friends, family, and extended
family more frequently. Seven of them also men-
tioned spending time alone with their husbands,
which was not mentioned in the TD Group.
Other goals included:
have close friends that are not part of the
family; find time for friends; people to
come over to my house more; visit parents
 8 T. K. CROWE, S. W. DUVALL & J. A. GUTIERREZ
more than once a summer; more time to do
activities with spouse and kids out of home;
go on a date with husband; take a weekend
trip with husband once a year without chil-
dren and without telephones.
Theme 5: Sharing the load
The fifth theme centered on receiving help from
husbands, children, and paid/other help with
everyday tasks. Mothers from both groups
acknowledged wanting help, although a desire
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for paid/other help was more prevalent in the
TD Group. Some occupational goals that were
noted by the TD Group included:
develop firm schedule for chores for every-
one in the house; husband take care of
documents and be responsible for business
expenses; would like to have a maid once
a month; develop school car-pooling with
other parents.
The DD Group discussed goals around shar-
ing the load with their other children almost
twice as often, and also more frequently men-
tioned sharing the load with their husbands.
Respite care for their adolescent with disabilities
was mentioned twice in the DD Group, but as
expected it was not mentioned in the TD
Group. Examples of occupational goals of the
DD Group included:
get my children involved in house chores
once a week; set aside 1½ hours on the
weekend to clean house as a family; more
equality of finances with husband; would
like to ask husband to help with household
and parenting tasks without starting argu-
ment; would like a maid; find reliable
respite.
Theme 6: Supporting/encouraging
adolescent development
This theme only emerged in the DD Group,
reflecting the distinct concerns and goals aris-
ing from raising an adolescent with a disability.
Mothers indicated specific goals for themselves
around preparing their adolescents for inde-
pendence, adolescent specific goals and
increased focus on meeting their adolescent’s
needs. Being able to support an adolescent
with a disability within a family unit can pre-
sent different challenges and goals for mothers.
The following are examples of goals that were
identified:
find reliable post-high school day program;
want to play with my kids; spend individua-
lized time with son with disabilities; come up
with strategies to make daughter comfortable
to be left with her sister for 1–2 hours; learn
how to transfer daughter without pain.
Focus group reflections
Before presentation of themes, the mothers in
the focus groups were asked to generate occu-
pational goals for themselves. When the themes
were presented, both mothers in the TD and DD
focus groups agreed with the developed themes
and felt that their self-generated goals fit within
the developed themes. No missing themes were
identified. The TD focus group expressed that
their adolescents’ growing independence and
increased time outside of the home (e.g., driving
themselves, employment, friend networks, dat-
ing) gave them some renewed time to pursue
their own passions and goals. Mothers in this
group also reported goals related to sharing the
load that involved their children as a way to
free up time for themselves.
The DD focus group did not endorse an
increased sense of flexible time, in fact they
often reported increased burden which they pos-
tulated was related to decreased support from
outside sources and continued high needs in
their adolescents. Goals related to sharing the
load with their other children was also conceptu-
alized as a beneficial practice. This group also
expressed surprise that mothers of typically
developing adolescents had not identified quality
time with their husbands as a major goal, as it
was very prominent for the DD focus group.
Upon reflection they indicated that logistics
regarding transportation and child-sitting may
make it more feasible for parents with typically
developing adolescents to seek out discretionary
time with their husbands on a regular basis while
the mothers of the adolescents with disabilities
indicated that often respite care is needed for

basic self-care needs. Prioritizing time to see a
mental health counselor was also noted as a
unique goal in the DD focus group (conceptual-
ized as a self-care task). Discussions from both
groups also included considerations of parenting
in general, with discussion around mothers’
expressed conflict between fostering indepen-
dence in their adolescents with not wanting
their adolescents to fail.
Discussion
This research aimed to determine what the occu-
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pational performance goals of mothers of typi-
cally developing adolescents and mothers of
adolescents with disabilities were, and if there
were differences between the two groups. The
findings provide new insights into the unique
occupations of mothers of adolescents, and the
influence that mothering an adolescent can
have on mothers’ occupational choices and fre-
quency of performance. The focus groups
endorsed the thematic coding, which showed
that, while there were mainly similarities
between the two groups, there were also some
key differences that bring to light the distinctive
occupations of mothers of typically developing
adolescents and mothers of adolescents with
disabilities.
Both groups expressed the desire to have
increased quality time with others, enhance
their own occupations, better organize their
lives, take care of themselves and ask others for
help in managing responsibilities. These results
align with maternal occupational goals in
samples that had younger children with
disabilities (Kuhaneck, Burroughs, Wright,
Lemanczyk, & Darragh, 2010; McGuire,
Crowe, Law, & VanLeit, 2004). For example,
Donovan et al. (2005) developed similar themes
using the COPM: Doing and Being Alone:
Taking Care of My Own Health and Well-
Being; Balancing Work, Home, and Community
Responsibilities; Household Management: Orga-
nizing Time and Resources; Doing and Being
with Others: Expanding My Social Life and
Sharing the Workload. This alignment suggests
that maternal occupational goals for women
raising children with disabilities may be similar
in many aspects across situations regardless of
the age of the child.
JOURNAL OF OCCUPATIONAL SCIENCE 9
Despite many similarities, there were some
key differences that highlight the distinct nature
of raising an adolescent with a disability. The
DD Group identified more occupational goals
overall (167 compared to 126), particularly in
relation to Making Time for my Own
Occupations. This may represent tendencies of
mothers of adolescents with disabilities to neglect
their own occupations in favor of supporting their
adolescents’ higher needs. The emphasis placed
by mothers of adolescents with disabilities on
basic self-care needs and time with their husbands
resonates with a study by Reid et al. (2011), in
which parents of young adults with cerebral
palsy referred to parenting as a sort of “balancing
act” between caring for their adolescent, taking
care of themselves, and making time for their
relationships with spouses. Similar difficulties
with not having enough time for sleep, leisure
occupations, or to spend with their husbands
has been noted previously (Donovan et al.,
2005; McGuire et al., 2004).
Finally, the goals around supporting and
encouraging adolescent development voiced in
the DD Group echoed the findings of previous
research with younger children with disabilities,
where specific goals included learning how to
help their child and improving toileting skills
(Donovan et al., 2005). Being able to support
an adolescent with a disability within a family
unit can present unique occupational challenges
for mothers in both the development of their
own mothering occupations and in supporting
the occupational development of their adoles-
cent child with a disability (Chaffey & Fossey,
2004; Nicholl & Begley, 2012; Segal, 2000;
Woodgate, Ateah, & Secco, 2008).
Limitations
It is acknowledged that the sample, consisting of
married women in heterosexual relationships
living in the same geographical area, is a limit-
ation. Further study of mothers of adolescents
in diverse socioeconomic circumstances and
varied geographical areas is necessary to enrich
the current understanding of the occupational
performance goals of mothers of adolescents.
The current study was exploratory in nature,
however, by combining quantitative and quali-
tative methods it may help elucidate this
 10 T. K. CROWE, S. W. DUVALL & J. A. GUTIERREZ
complicated issue. Modest sample size is also a
potential limitation of this study.
Implications for future research
Further qualitative research describing the
unique occupations of mothers of adolescents
both with and without disabilities is needed to
increase understanding of maternal occupations,
the phases surrounding adolescent children and
motherhood, and the impact of disability on
occupational performance. Future research
examining differences between and within
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these groups, considering additional factors
such as maternal employment, may be helpful.
Studies are also needed to examine the occu-
pational performance goals of mothers caring
for adult children with disabilities.
Conclusion
This research aimed to describe the nature of
mothering occupations for mothers of adoles-
cents, and to determine if there are differences
between the occupational goals of mothers of
typically developing adolescents and mothers of
children with disabilities. The results demonstrate
that mothers of adolescents, regardless of whether
they have a disability, are generally similar in
nature. However, the differences between the
two groups highlight distinct differences in the
nature of mothering adolescents with disabilities.
The findings enhance understanding of what may
impact or alter occupational pursuits as the pro-
tracted dependence of children with disabilities
on their mothers likely impacts mothers’ occu-
pational choices and goals. Understanding the
occupational performance challenges and goals
of mothers of adolescents with disabilities can
facilitate a collaborative approach to supporting
the family as a unit.
Acknowledgements
We would like to thank all the mothers who generously
donated their time to participate in the initial study
and the focus groups. We also thank Cynthia Applegate,
MOT, OTR/L; Gina Hughes, MOT, OTR/L; Neha
Zalavadia, MOT, OTR/L; Sarah Mugavero, MOT, OTR/
L; Nanette Concotelli-Fisk, MSW; Sue Iliff, MA, OTR/
L; Kristina Perea, MSW; Glennita Haskey, MOT; Hallie
Michael, MOT, OTR/L; Betty Skipper, PhD; Nancie
Furgang, M.S., OTR/L and Ingrid Hendrix, MLIS for
their contributions. This study was conducted in part
to fulfill the requirements for a master’s degree in occu-
pational therapy from the University of New Mexico
for the third author.
References
Atwal, A., Owen, S., & Davies, R. (2003). Struggling for
occupational satisfaction: Older people in care
homes. British Journal of Occupational Therapy, 66
(3), 118–124. doi:10.1177/030802260306600306
Bourke-Taylor, H., Howie, L., & Law, M. (2010). Impact
of caring for a school-aged child with a disability:
Understanding mothers’ perspectives. Australian
Occupational Therapy Journal, 57(2), 127–136.
doi:10.1111/j.1440-1630.2009.00817.x
Carswell, A., McColl, M. A., Baptiste, S., Law, M.,
Polatajko, H., & Pollock, N. (2004). The Canadian
Occupational Performance Measure: A research and
clinical literature review. Canadian Journal of
Occupational Therapy, 71(4), 210–222. doi:10.1177/
000841740407100406
Chaffey, L., & Fossey, E. (2004). Caring and daily life:
Occupational experiences of women living with sons
diagnosed with schizophrenia. Australian
Occupational Therapy Journal, 51(4), 199–207.
doi:10.1111/j.1440-1630.2004.00460.x
Chasteen, K., & Kissman, K. (2000). Juggling multiple
roles and the act of resistance. Contemporary Family
Therapy, 22(2), 233–240. doi:10.1023/A:1007785904574
Crowe, T. K., & Florez, S. I. (2006). Time use of mothers
with school-age children: A continuing impact of a
child’s disability. American Journal of Occupational
Therapy, 60(2), 194–203. doi:10.5014/ajot.60.2.194
Crowe, T. K., & Michael, H. J. (2011). Time use of
mothers with adolescents: A lasting impact of a child’s
disability. OTJR: Occupation, Participation and Health,
31(3), 118–126. doi:10.3928/15394492-20100722-01
Cup, E. H., Scholte op Reimer, W. J., Thijssen, M. C., &
van Kuyk-Minis, M. A. (2003). Reliability and validity
of the Canadian Occupational Performance Measure
in stroke patients. Clinical Rehabilitation, 17(4),
402–409. doi:10.1191/0269215503cr635oa
Dedding, C., Cardol, M., Eyssen, I. C. J. M., Dekker, J., &
Beelen, A. (2004). Validity of the Canadian
Occupational Performance Measure: A client-cen-
tered outcome measurement. Clinical Rehabilitation,
18(6), 660–667. doi:10.1191/0269215504cr746oa
Doig, E., Fleming, J., Cornwell, P. L., & Kuipers, P.
(2009). Qualitative exploration of a client-centered,
goal-directed approach to community-based occu-
pational therapy for adults with traumatic brain
injury. American Journal of Occupational Therapy,
63(5), 559–568. doi:10.5014/ajot.63.5.559
Donovan, J. M., VanLeit, B. J., Crowe, T. K., & Keefe, E. B.
(2005). Occupational goals of mothers of children with
disabilities: Influence of temporal, social, and emotional
contexts. American Journal of Occupational Therapy,
59(3), 249–261. doi:10.5014/ajot.59.3.249

Dunbar, S. B., & Roberts, E. (2006). An exploration of
mothers’ perceptions regarding mothering occu-
pations and experiences. Occupational Therapy in
Health Care, 20(2), 51–73. doi:10.1080/J003v20n02_04
Engel-Yeger, B., Jarus, T., Anaby, D., & Law, M. (2009).
Differences in patterns of participation between
youths with cerebral palsy and typically developing
peers. American Journal of Occupational Therapy,
63, 96–104. doi:10.5014/ajot.63.1.96
Eyssen, I. C. J. M., Steultjens, M. P. M., Oud, T. A. M.,
Bolt, E. M., Maasdam, A., & Dekker, J. (2011).
Responsiveness of the Canadian Occupational
Performance Measure. Journal of Rehabilitation
Research and Development, 48(5), 517–528. doi:10.
1682/JRRD.2010.06.0110
Downloaded by [University of Saskatchewan Library] at 15:23 10 June 2016
Gribble, J., & Bremner, J. (2012). The challenge of attain-
ing the demographic dividend. (Policy Brief). Retrieved
from http://www.prb.org/Publications/Reports/2012/
demographic-dividend.aspx
Hsiah, H-F., & Shannon, S. E. (2005). Three approaches
to qualitative content analysis. Qualitative Health
Research, 15(9), 1277–1288. doi:10.1177/1049732305
276687
King, G., Petrenchik, T., Law, M., & Hurley, P. (2009).
The enjoyment of formal and informal recreation
and leisure activities: A comparison of school-aged
children with and without physical disabilities.
International Journal of Disability, Development and
Education, 56(2), 109–130. doi:10.1080/10349120902
868558
Kjeken, I., Dagfinrud, H., Uhlig, T., Mowinckel, P., Kvien,
T. K., & Finset, A. (2005). Reliability of the Canadian
Occupational Performance Measure in patients with
ankylosing spondylitis. Journal of Rheumatology, 32
(8), 1503–1509. Retrieved from http://www.jrheum.
org/content/32/8/1503
Koch, C., & Mayes, R. (2012). The balancing act: Meeting
the needs of all children including an adolescent with
disabilities. Journal of Applied Research in Intellectual
Disabilities, 25(5), 464–475. doi:10.1111/j.1468-3148.
2012.00688.x
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 spec-
trum disorder. Physical and Occupational Therapy
in Pediatrics, 30(4), 340–350. doi:10.3109/01942638.
2010.481662
Larson, E. A. (2000a). Mothering: Letting go of the past
ideal and valuing the real. American Journal of
Occupational Therapy, 54(3), 249–251. doi:10.5014/
ajot.54.3.249
Larson, E. A. (2000b). The orchestration of occupation:
The dance of mothers. American Journal of
Occupational Therapy, 54(3), 269–280. doi:10.5014/
ajot.54.3.269
Law, M., Baptiste, S., Carswell, A., McColl, M. A.,
Polatajko, H., & Pollock, N. (2005). Canadian
Occupational Performance Measure (4th ed.).
Ottawa, Canada: CAOT Publications ACE.
Lawton, M. P. (1978). Leisure activities for the aged.
Annals of the American Academy of Political and
JOURNAL OF OCCUPATIONAL SCIENCE 11
Social Science, 438(1), 71–80. doi:10.1177/000271627
843800108
Livingston, M. H., Stewart, D., Rosenbaum, P. L., &
Russell, D. J. (2011). Exploring issues of participation
among adolescents with cerebral palsy: What’s impor-
tant to them? Physical and Occupational Therapy in
Pediatrics, 31(3), 275–287. doi:10.3109/01942638.2011.
565866
McColl, M. A., Paterson, M., Davies, D., Doubt, L., &
Law, M. (2000). Validity and community utility of
the Canadian Occupational Performance Measure.
Canadian Journal of Occupational Therapy, 67(1),
22–30. doi:10.1177/000841740006700105
McGuire, B. K., Crowe, T. K., Law, M., & VanLeit, B.
(2004). Mothers of children with disabilities:
Occupational concerns and solutions. OTJR:
Occupation, Participation, and Health, 24(2), 54–63.
doi:10.1177/153944920402400203
Nicholl, H. M., & Begley, C. M. (2012). Explicating
caregiving by mothers of children with complex
needs in Ireland: A phenomenological study. Journal
of Pediatric Nursing, 27(6), 642–651. doi:10.1016/j.
pedn.2011.07.003
Peters, K., & Jackson, D. (2009). Mothers’ experiences of
parenting a child with attention deficit hyperactivity
disorder. Journal of Advanced Nursing, 65(1), 62–71.
doi:10.1111/j.1365-2648.2008.04853.x
Phares, V., Fields, S., & Kamboukos, D. (2009). Fathers’
and mothers’ involvement with their adolescents.
Journal of Child and Family Studies, 18(1), 1–9.
doi:10.1007/s10826-008-9200-7
Reid, A., Imrie, H., Brouwer, E., Clutton, S., Evans, J.,
Russell, D., & Bartlett, D. (2011). “If I knew then
what I know now”: Parents’ reflections on raising a
child with cerebral palsy. Physical and Occupational
Therapy in Pediatrics, 31(2), 169–183. doi:10.3109/
01942638.2010.540311
Sakzewski, L., Boyd, R., & Ziviani, J. (2007). Clinimetric
properties of participation measures for 5- to 13-year-
old children with cerebral palsy: A systematic review.
Developmental Medicine and Child Neurology, 49(3),
232–240. doi:10.1111/j.1469-8749.2007.00232.x
Sandelowski, M. (2000). Focus on research methods:
Whatever happened to qualitative description?
Research in Nursing and Health, 23(4), 334–340.
doi:10.1002/1098-240X(200008)23:4<334::AID-NUR9>3.
0.CO;2-G
Sandelowski, M., & Barroso, J. (2003). Classifying the
findings in qualitative studies. Qualitative Health
Research, 13(7), 905–923. doi:10.1177/1049732303253488
Sawyer, S. M., Afifi, R. A., Bearinger, L. H., Blakemore, S.
J., Dick, B., Ezeh, A. C., & Patton, G. C. (2012).
Adolescence: A foundation for future health. Lancet,
379(9826), 1630–1640. doi:10.1016/S0140-6736(12)60072-5
Schneider, J., Wedgewood, N., Llewellyn, G., &
McConnell, D. (2006). Families challenged by and
accommodating to the adolescent years. Journal of
Intellectual Disability Research, 50(12), 926–936.
doi:10.1111/j.1365-2788.2006.00925.x
Segal, R. (2000). Adaptive strategies of mothers with chil-
dren with attention deficit hyperactivity disorder:
 12 T. K. CROWE, S. W. DUVALL & J. A. GUTIERREZ
Enfolding and unfolding occupations. American
Journal of Occupational Therapy, 54(3), 300–306.
doi:10.5014/ajot.54.3.300
Suris, J. C., Michaud, P. A., & Viner, R. (2004). The adoles-
cent with a chronic condition. Part I: Developmental
issues. Archives of Disease in Childhood, 89(10), 938–
942. doi:10.1136/adc.2003.045369
Todd, S., & Jones, S. (2005). Looking at the future and
seeing the past: The challenge of the middle years of
parenting a child with intellectual disabilities.
Journal of Intellectual Disability Research, 49(6),
389–404. doi:10.1111/j.1365-2788.2005.00675.x
Tonkin, B. L., Ogilvie, B. D., Greenwood, S. A., Law, M.
C., & Anaby, D. R. (2014). The participation of chil-
dren and youth with disabilities in activities outside
Downloaded by [University of Saskatchewan Library] at 15:23 10 June 2016
of school: A scoping review. Canadian Journal of
Occupational Therapy, 81(4), 226–236. doi:10.1177/
0008417414550998
Verkerk, G. J. Q., Wolf, M. J. M., Louwers, A. M.,
Meester-Delver, A., & Nollet, F. (2006). The
reproducibility and validity of the Canadian
Occupational Performance Measure in parents of chil-
dren with disabilities. Clinical Rehabilitation, 20(11),
980–988. doi:10.1177/0269215506070703
Woodgate, R. L., Ateah, C., & Secco, L. (2008). Living in
a world of our own: The experience of parents
who have a child with autism. Qualitative Health
Research, 18(8), 1075–1083. doi:10.1177/1049732308
320112
The World Bank. (2006). World development report 2007:
Development and the next generation (Report No.
35999). Washington, DC: The International Bank
for Reconstruction and Development / The World Bank.
World Health Organization. (2014). Adolescent develop-
ment. Retrieved from http://www.who.int/maternal_
child_adolescent/topics/adolescence/development/en/