Home and community occupational therapy for children and youth: A ...

Home and community occupational therapy for children and youth:
A before and after study
Mary Law ■ Annette Majnemer ■ Mary Ann McColl ■ Jackie Bosch ■ Steven Hanna ■ Seanne Wilkins
Stephen Birch ■ Jessica Telford ■ Debra Stewart
Key words
■ Home occupational therapy ■ Health care costs ■ Rehabilitation, community-based
Abstract
Background. There has been an increased focus on home care service provision in recent years, yet there are few data available
about the provision of home and community occupational therapy for children and youth.Purpose.To evaluate key elements of
a service provision model for home care occupational therapy in terms of occupational performance outcomes, perception of
care and cost. Methods. Eleven centres in Ontario and Quebec recruited 167 children and youth up to 18 years of age to a before
and after study of occupational therapy services in the home and community. Occupational performance, quality of life and costs
were measured at baseline and study end. Perception of care was measured at study completion.Results. A statistically and clinically
significant improvement in occupational performance was demonstrated (p

LAW ET AL.
proportionately larger than for adults receiving rehabilitation
because of their developmental stage. Occupational therapy
services may be of particular importance since they promote
long-term change in occupational performance ability and
potentially prevent or decrease the need for health and social
services in the future.
There is increasing evidence in the research literature
supporting the effectiveness of occupational therapy interventions
provided to children and youth with disabilities
through home and community care programs (McGibbon
Lammi & Law, 2003; Miller et al., 2001). Occupational therapy
home care services focus on enabling children and youth
with health issues and/or disabilities to engage in daily occupations
of their choice, including participation in self-care,
work, school, household and community activities, social
relationships, play and leisure. Children with special needs
experience lower rates of participation in ordinary daily
activities (Brown & Gordon, 1987; Pless, Cripps, Davies, &
Wadsworth, 1989). This pattern of restricted occupation
appears to start early, and is ingrained by adolescence.
Children with special needs also experience social isolation
(Blum, Resnick, Nelson, & St. Germaine, 1991; Cadman,
Boyle, Szatmari, & Offord, 1987; LaGreca, 1990; Law &
Dunn, 1993). Enabling participation in the typical activities
of childhood is the major focus for pediatric occupational
therapy.
Although there is variation in service provision across
regions, current practice in home and community occupational
therapy typically follows Canadian evidence-based guidelines
for an occupation-based, client-centred practice (Canadian
Association of Occupational Therapists [CAOT], 1997).
Although the relationship between service utilization
and outcomes from occupational therapy services is becoming
an increasing focus of research (Alexander, Bugge, &
Hagen, 2001; Finlayson & DalMonte, 2002; Flood et al.,
2005), there is little knowledge about the impact of different
service utilization patterns on occupational performance
outcomes, cost, and perceptions of care for children and
youth in Canada. This study was undertaken to collect data
that would provide information about the relative influences
of service delivery models, and in particular how the levels
and methods of service relate to occupational performance
outcomes, cost and perceptions of care. Specific study
hypotheses were:
• A direct service model (in contrast to consultative) is
most costly, but results in better client/family perception
of care and better outcomes.
• The frequency, duration and intensity of service are
positively related to all three outcomes of cost, perception
and occupational performance.
• A therapy focus on participation and environment
results in positive occupational performance outcomes,
while maintaining the same costs.
• Personal and contextual variables, such as age, severity
of disability, and levels of support significantly affect
service utilization patterns such as model, amount and
focus and outcomes.
The conceptual model to guide the analysis is drawn in
Figure 1. Such information can enhance the ability of decision-makers
at all levels (i.e. clinical managers, program
managers, and policy makers) in planning these health
services.
Methods
Study design
The study used a prospective before and after design.
Participants referred to occupational therapy in either the
home or community settings were eligible for the study.
Those who along with their family, consented to participate
were evaluated prior to the initiation of occupational therapy
services and at the end of the intervention period or 6
months, whichever came first. Occupational performance,
quality of life and costs were measure at baseline and study
end. Perception of care was measured at study completion.
This study was not a clinical trial comparing interventions
but rather focused on the relationships between service utilization
variables and outcomes/cost.
Recruitment
A total of 175 children and youth were recruited from eight
centres in Ontario and three centres in Quebec. The centres
in Ontario were primarily publicly funded while the centres
in Quebec were primarily privately funded. Recruitment
occurred between September 2001 and December 2003 and
the study was coordinated from CanChild Centre for
Childhood Disability Research, McMaster University.
FIGURE 1
Conceptual model of study hypotheses.
Service utilization
Model of Service
• direct consultation
Amount
• frequency, duration, intensity
Focus
• person, environment
Baseline characteristics
Age
Severity of impairment
Socioeconomic status
Outcomes
Functional Abilities
Perception of care
Cost
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Inclusion/Exclusion criteria
Children and youth were eligible for referral to the study if they:
• Had a health problem or disability that affected their
ability to perform daily activities;
• Had been admitted to home and/or community based
occupational therapy services;
• Were anticipated to receive at least three occupational
therapy visits;
• Were able to speak English or French (depending upon
the centre) sufficiently well to participate in an interview
and self-administered questionnaire; and
• Were between 0 and 18 years of age at the time of
recruitment.
Clients were excluded from the study if they:
• Were too ill or rapidly deteriorating to participate in
the therapeutic process; or
• Were discharged prematurely before three occupational
therapy visits had accrued.
Data collection
Specific variables that were collected during the research are
outlined as follows. At baseline, demographic information
such as age, severity of impairment (i.e. number of health
and/or development problems), socio-economic status (i.e.
family income), concurrent services and equipment used
were obtained. During follow-up, service utilization variables
collected included service model, amount and focus. Service
model information related to the primary nature of the occupational
therapy service as direct (1:1 therapy) or a combination
of direct and consultative (provision of education,
information and home program). Service amount data
included service frequency (number of visits), duration (total
number of weeks receiving therapy) and intensity (total
hours of therapy time). Service focus (person, i.e. individualized
remediation programs for writing or environment, i.e.
provision of adaptive equipment or modification to home)
reflected the factors that were addressed during therapy in
order to improve occupational performance outcomes. Unit
costs were determined for each service agency to allow for
variations in unit costs between agencies and settings.
Therapists used two instruments to measure occupational
performance outcomes at baseline and study end. The
Canadian Occupational Performance Measure (COPM)
assessed the client’s perception of performance in daily activities.
Parents were asked to be proxy respondents if the child
was unable to complete the measures themselves. The COPM
is a well validated, individualized measure designed for use
by occupational therapists to detect change in a client's
self-perception of performance in daily occupations (self
care, community, work and leisure activities) over time (Law
et al., 2005; McColl, Paterson, Davies, Doubt, & Law, 2000;
Pollock & Stewart, 1998). The Pediatric Quality of Life
Inventory (PedsQL) was used as a measure of health-related
quality of life. This measure is a 23-item questionnaire which
generates 4 generic core scales (physical, emotional, social
and school functioning) that measure the core dimensions of
health as identified by the World Health Organization
including role, which for children is considered school functioning,
(Varni, 1998). The reliability and validity of the
instrument has been well documented (Varni, Burwinkle,
Seid, & Skarr, 2003; Varni, Seid, & Kurtin, 2001). Both the
COPM and the PedsQL were completed at baseline and study
end so that change in occupational performance could be
measured.
Perception of care was measured at study end using the
Measure of Processes of Care (MPOC). This 20-item scale
asks parents to rate the care their child received in 5 areas:
enabling and partnership, providing general information,
providing specific information, coordinated and comprehensive
care, and respectful and supportive care (Gan, 1999;
King, Rosenbaum, & King, 1996).
Statistical analysis
All summary statistics including means, standard deviations
and correlations were calculated using SPSS (Statistical
Package for the Social Sciences) software version 11.0 for
Windows (SPSS Inc., 2004). Structural equation modeling
(Kline, 1998) was used to test study hypotheses regarding the
relationships between service model, frequency, and focus
with children's age, severity, family income and study outcomes.
In a structural equation approach, measurement and
structural models are developed sequentially to describe the
inter-relationships among variables. The advantage of this
statistical approach is that several factors can be used
together to estimate the concept without measurement error
(Kline, 1998) (similar to the older statistical practice of factor
analysis).The structural model is developed by specifying
TABLE 1
Baseline characteristics.
Characteristics N (%)
Age Range (years)

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TABLE 2
Services paid for out-of-pocket.
Services N (%)
Speech and Language Pathology 15 (9.0 %)
Respite 12 (7.2 %)
Physiotherapy 11 (6.6 %)
Chiropractor 8 (4.8 %)
Naturopath 8 (4.8 %)
Educator/Developmental Specialist 7 (4.2 %)
Psychologist/Psychiatrist 6 (3.5 %)
Orthotist/Orthopedist 5 (3 %)
Special Needs Worker 4 (2.4 %)
Audiologist 3 (1.8 %)
Social Work 2 (1.2 %)
Nutrition 1 (0.6 %)
the hypothesized causal relationships among the factors
developed in the measurement model (See Figure 1 for the
specific relationships tested within this study). These causal
pathways are estimated as regression coefficients in terms of
their direction, size, and statistical significance. Summary
measures of overall model fit are also available, and can be
used to compare models. Sample size requirements for structural
equation models are typically 5-10 participants per
hypothesized pathway. Mplus version 3.11 software was used
to perform the structural equation modeling analysis
(Muthen & Muthen, 1998-2004).
Results
Baseline/Demographics
Of the 175 participants for whom baseline data were collected,
study outcome data were available for 167 (dropout
rate of 4.6%). Of the 8 participants for whom final outcomes
TABLE 3
Equipment paid for out-of-pocket.
Equipment N (%)
Mobility
Orthotics 16 (9.6 %)
Splints 9 (5 %)
Wheelchairs 3 (1.8 %)
Walker 3 (1.8 %)
Activities of daily living
Communication device 11 (6.6 %)
Toilet aids (e.g. versa frame, commode) 8 (4.8 %)
Bathing aids (e.g. bath lift, grab bar, shower chair) 4 (2.4 %)
Computer with writing aids 4 (2.4 %)
Feeding pump 3 (1.8 %)
Medical
Ventolin 3 (1.8 %)
Catheters 3 (1.8 %)
Suction equipment and IV 1 (0.6 %)
Blood pressure pump 1 (0.6 %)
Asthma machine 1 (0.6 %)
were not collected, 2 were because of hospitalizations, 2
because the client terminated services before three visits were
completed, and 4 were because the attending therapist did not
complete a discharge visit, even after numerous requests from
the project office. Therefore, all analyses were performed on
the 167 participants for whom complete data were collected.
The study participants were primarily male (59%) with a
mean age of 4.8 years (standard deviation: ± 3.5 years, range; 15
months to 17 years). The youngest participant was 1.5 months
old at the initial visit while the oldest participant was 16 years
old. Almost 70% of the participants had a formal diagnosis
with the most common diagnoses being cerebral palsy, autism
spectrum disorder or developmental delay. Table 1 summarizes
the baseline characteristics of the study population.
Almost all children (93%) came from a family with at
least one working parent, and just over half (58.1%) of the
families had two parents employed. Approximately 45% of
the families involved in the study had a combined family
annual income of $60,000 CAD or greater. Children received
an average of 3 services (standard deviation, ± 2.3), of which
0.629 ± 1.08 were not publicly funded, in addition to occupational
therapy and any publicly funded services they were
receiving. These types of privately funded services are listed
in Table 2. Of these additional services 2.4% (N=4) were privately
funded occupational therapy. Payment of out-ofpocket
expenses for services was significantly related both to
family income (r = 0.28, p =

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TABLE 5
Mean hourly occupational therapy (OT) costs by subgroups.
Age N (%) Hourly cost Total average OT
median (IQR)
service cost
median (IQR)
< 2 years 40 (24) $32.00 (30.35,32.00) $327.33 (276.31, 581.40)
2 - 5 years 77 (46) $30.35 (29.96, 31.96) $268.09 (203.48, 392.23)
6 - 12 years 44 (26) $31.96 (29.96, 70.00) $322.85 (221.58, 630.00)
13 - 18 years 6 (4) $50.18 (30.35, 70.00) $304.19 (214.73, 580.13)
Number of visits N (%) Hourly cost Total average OT
median (IQR)
service cost
median (IQR)
5 or less visits 21 (12) $32.00 (29.96, 70.00) $208.00 (118.21, 262.67)
6 - 10 visits 80 (48) $30.35 (29.96, 32.00) $272.32 (215.23, 334.00)
11 + visits 66 (40) $31.15 (29.96, 39.00) $510.89 (301.47, 866.75)
IQR = interquartile range
Occupational therapy intervention
The study follow-up time was 6 months. The mean number
of occupational therapy visits per child was 10.8. The average
visit length was approximately one hour. The majority of participants
(87.4%) were already on the therapist's caseload at
study baseline, and had been seen by occupational therapy
previously. A similar proportion (75%) were continuing
treatment after the study was completed.
The majority of visits were community based at children's
centres as opposed to home based (65% versus 35%)
(Table 4). The focus of service was primarily person, as
opposed to person/environment (58% versus 42%) and
delivered primarily as direct/consultative as opposed to direct
only (53% versus 47%). The median cost of occupational
therapy intervention was $30.55 CAD per hour with an
overall median cost per participant of about $298.44 (CAD)
over the 6-month period of the study. Table 5 outlines the
cost of occupational therapy by age and number of visits.
TABLE 6
COPM results.
Maximum Performance Satisfaction
score score score
mean (SD) mean (SD)
Baseline 3.7 (±1.5) 4.2 (±1.5)
10
n= 166 n=166
Study end 6.2 (±1.5)* 6.7 (±1.8)*
10
n =165 n=166
* statistically significant difference in score at p

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TABLE 8
PedsQL results by subscale.
Scale Max. Initial visit Study end
score N mean (SD) N mean (SD)
p
Physical functioning 100 162 56.7 (±25.7) 143 61.9 (±25.4)

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TABLE 10
Measures of processes of care results by subscale.
Score
Scale Max. score N mean (SD)
Enabling and partnership 7 150 5.9 (±1.1)
Providing general information 7 136 4.7 (±1.8)
Providing specific information 7 150 5.5 (±1.4)
Coordinated and supportive care 7 148 6.0 (±1.1)
Respectful and supportive care 7 151 6.2 (±0.9)
more severe disabilities tended to pay more out-of-pocket
expenses and this was not dependent upon the family
income. The original intent was to examine cost in terms of a
best service provision model, however the structural equation
modeling did not demonstrate any relationships so
further cost analysis was not pursued.
Families’ perceptions of care were promising, and
indicated that their needs are predominantly being met. The
families participating in this study rated occupational therapy
services more favorably than ratings of overall children’s
rehabilitation services across the province (King et al., 1996).
This finding could be attributed to the client-centred focus
emphasized in this study and the fact that perception was
being measured for only one, not multiple services.
The original hypotheses of significant relationships
between focus, intensity and model of service to outcome
were not supported in this study. There are several possible
explanations for this finding. First, these results could indicate
that therapists are choosing the appropriate number of
visits for each client in order to achieve their goals. The
client-centred approach to therapy can streamline the
process of issue identification and prioritization (CAOT,
1997). This process may enable therapists to be both efficient
and effective in addressing occupational performance
deficits. A second reason for the lack of relationship could be
that a large number of children were receiving additional
services along with occupational therapy or their parents
were providing increased support. The download of the
financial responsibility of service provision to the family of
children with disabilities is not unique to the Canadian
health care system. Call, Wisner, Blum, Kelly, and Nelson
(1997) described a similar trend in the United States, even for
families who belonged to health maintenance organizations.
Since children were receiving additional therapies, perhaps
the duration and intensity of these therapies also need to be
included in the model. Unfortunately, sufficient information
was not collected on the additional therapies to enable that to
occur in this study. A third explanation could be that the
study did not have enough participants to detect the
relationships. The original sample size for the study was 242
participants, however even with an extended recruitment
period, this was not possible to attain. The major obstacle to
recruitment was the therapists' time. Therapists noted that
they did not have the time to find participants and then to
also explain the study to families, even though therapists were
reimbursed for time spent in study related activities. Miller,
McKeever and Coyte (2003) also noted staffing shortages as a
common barrier to recruitment in home care studies.
Although it is preferential to believe that the first explanation
FIGURE 2
Structural equation model.
Baseline characteristics
Age Impairment Socio-economic status
-0.18
COPM 1
PedsQL 1
0.52
0.82
COPM 2
PedsQL 2
Outcomes
Service
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LAW ET AL.
of the study results is accurate, the other factors that may
affect outcome cannot be ignored.
As occupational therapists practicing in Canada, it is
important to consider the implications of these findings. The
results of this study found a significant improvement in occupational
performance outcomes after home and community
occupational therapy services. Yet, we found no significant
relationship between service intensity (number of occupational
therapy visits) and outcomes. In fact, children and
youth receiving greater than 11 visits experienced the same
amount of change in performance as those receiving fewer
visits. Therapists should consider measuring changes in
outcome regularly to determine if performance goals have
been met. The results of this study indicate that more therapy
does not necessarily result in greater improvements in
occupational performance outcomes.
Conclusion
These results indicate that a client-centred approach to
occupational therapy is related to a positive change in occupational
performance and quality of life outcomes, there is
no significant relationship between amount of service and
outcome, and parents of children with disabilities feel the
need to supplement publicly funded services. Further
research into the relationships between service provision,
cost and outcomes of occupational therapy for children and
youth in the home and community is needed.
Acknowledgements
This research was generously funded with grants from the
Hospital for Sick Children Foundation and the Max Bell
Foundation.
We would like to sincerely thank the occupational therapists
and the families who took the time to participate in this
research project from: KidsAbility Centre for Child
Development in Waterloo, Ontario; Sudbury Regional
Children's Treatment Centre in Sudbury, Ontario; Therapy
Partners Incorporated in Guelph, Ontario; Montreal
Children's Hospital in Montreal, Quebec; Halton Parent
Infant Programme in Halton, Ontario; Pace Home Care
Services in Kitchener, Ontario; L’ergothérapie de la maison à
l’école in Montreal, Quebec; Shirley Sutton Private Clinic in
Collingwood, Ontario; MacKay Center in Montreal, Quebec;
Grey Bruce Health Services in Owen Sound, Ontario; and
Soldiers’ Memorial Hospital in Orillia, Ontario.
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Authors
Mary Law, PhD, OT Reg (Ont.), is Associate Dean and Professor,
School of Rehabilitation Science, McMaster University, Institute
for Applied Health Sciences, 1400 Main St. W. Hamilton, ON
L8S 1C7 E-mail: lawm@mcmaster.ca.
Annette Majnemer, PhD, OT, is Professor, School of Physical and
Occupational Therapy, McGill University, Montreal, PQ.
Mary Ann McColl, PhD, OT Reg (Ont.), is Professor, School of
Rehabilitation Therapy, Queen's University, Kingston, ON.
Jackie Bosch, MSc, OT Reg (Ont.), is Assistant Professor, School of
Rehabilitation Science, McMaster University, Hamilton, ON.
Steven Hanna, PhD, is Assistant Professor, Department of Clinical
Epidemiology and Biostatistics and School of Rehabilitation
Science, McMaster University, Hamilton, ON.
Seanne Wilkins, PhD, OT Reg (Ont.), is Associate Professor, School
of Rehabilitation Science, McMaster University, Hamilton, ON.
Stephen Birch, PhD, is Professor, Department of Clinical Epidemiology
and Biostatistics, McMaster University, Hamilton, ON.
Jessica Telford, BA, is Research Assistant, School of Rehabilitation
Science, McMaster University, Hamilton, ON.
Debra Stewart, MSc, OT Reg (Ont.), is Assistant Dean (OT), School
of Rehabilitation Science, McMaster University, Hamilton, ON.
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