mental health and other service use by young children

MENTAL HEALTH AND OTHER SERVICE USE BY YOUNG CHILDREN WITH
FETAL ALCOHOL SPECTRUM DISORDER
Rosanne MT Mills1, John D McLennan2, Michelle M Caza1
1
Department of Community Health Sciences, University of Calgary, 2Departments of Community Health
Sciences and Psychiatry, University of Calgary, Alberta
ABSTRACT
Background
Children with fetal alcohol spectrum disorder (FASD) are at high risk for developing mental health
problems. Early involvement of mental health providers may ameliorate mental health outcomes. Little is
known of the extent to which young children with FASD access mental health or other services.
Objective
To determine the use of mental health providers and other services by young children with FASD and to
compare these with children with attention-deficit/hyperactivity disorder (ADHD).
Methods
Self-report, anonymous questionnaires were mailed to all caregivers of children under the age of 7 years
who had their first contact with one of two large speciality facilities for children with special needs in
Edmonton, Canada between October 1, 2000 and October 1, 2002. Data on children reported as having
FASD (n=14) and ADHD (n=15) were extracted from all the respondents. Questionnaire items included
professionals consulted, services received, referral information, and concerns about services.
Results
Children with FASD had substantial variation in the types and combinations of providers and services and
tended to see fewer mental health providers than children with ADHD. This may have been partly a
function of less mental health referrals from family doctors and paediatricians. The complex referral and
service utilization patterns of three children are depicted.
Conclusions
Children with FASD at risk for or demonstrating mental health problems may not be receiving adequate
mental health services in a timely manner. Further research is needed to better understand the type and
quality of mental health and other services received by this population.
P
revalence rates for fetal alcohol spectrum
disorder (FASD) range from 0.331 to 1902
per 1,000, with an estimated rate of 9 per
1000 proposed for Canada.3 It is the leading
known cause of mental retardation in both Canada
and the United States.3,4 Although not all children
with FASD have mental retardation, many whose
IQ scores fall within the normal range may still
exhibit deficits in learning, executive functioning
and/or socialization.4-8 In addition, children with
FASD often have one or more mental health
problems or disorders.6 In a sample of North
Dakota children under the age of four, 81% of
children diagnosed with FASD and 68% of
children diagnosed with partial FASD presented
with at least one comorbid mental disorder.4
Children from five to nine years of age from this
same population had comorbidity rates of 96%
and 93% respectively. As children age, the
prevalence of mental health problems may
increase. In a longitudinal study of German
children with FASD, Steinhausen, Willms and
Spohr9 demonstrated that the prevalence of
language disorders, sleep disorders, abnormal
habits, and emotional disorders increased between
the preschool years and middle childhood, while
the prevalence of enuresis and eating disorders
diminished. Mental health problem rates of over
90% have been reported in small samples of
adults with FASD.10,11
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Mental health and other service use by young children with fetal alcohol spectrum disorder
Attention-deficit
hyperactivity
disorder
(ADHD) is reported to be the most common
mental health problem among children with
FASD.6 In Burd and colleagues’ North Dakota
study4, the prevalence of ADHD was over 70% in
all age groups. Other problems among preschool
children with FASD may include attachment
disorders, behavioural problems, difficulty with
transitions and rules, feeding and sleeping
problems, and mood disorders. Older children
may have additional problems with depression,
aggression, and self-image.4,6 Adolescents and
adults with FASD may have elevated rates of
alcohol or drug abuse and other mental health
difficulties, including depression.10,11
While certain mental health problems, such
as impairments in cognition and attention, may be
linked
directly
with
the
underlying
pathophysiology of FASD, others may be
secondary as a result of exposure to psychosocial
risk factors. In a group of 6 to 12 year olds with
FASD, 61% had experienced physical abuse,
sexual abuse, or domestic violence.12 Disruptions
in home life are also common. Parents’ substance
abuse often leads to the placement in one or more
foster-care homes.13,14 In Saskatchewan, 72% of
people with FASD had resided in foster care for
part of their lives.15
Given the complexity of the medical
problems and social environments faced by
children with FASD, the attention of a multidisciplinary team is recommended for the
assessment and care of their conditions.6,16,17 Early
intervention and effective management of existing
mental health problems may improve long-term
outcomes.
Although the effectiveness of specific mental
health interventions for children with FASD is
unknown, at least some of the interventions for
children’s mental health disorders may be helpful
to children with FASD.8,14,17 For example,
psychological testing may help educators and
parents adopt expectations and learning strategies
appropriate for the individual’s strengths and
weaknesses.6,18 Cognitive-behavioural training
and behavioural family therapy have been found
to be successful in some children with mental
retardation.14 In addition, medication may be
helpful in reducing symptoms of ADHD.18,19
Despite the extensive mental health
difficulties experienced by children with FASD, it
2
is hypothesized that these children are primarily
managed in the traditional medical system with
efforts more focussed on physical health and
learning concerns.4
Little research has been conducted to discern
the actual services received by these children.
There have been a small number of reports of
hospitalization which have found higher rates and
longer periods of hospitalization for children with
FASD.20,21 Although this data suggests that
children with FASD are more often severely ill
and/or injured than children without disabilities, it
does not provide a good indicator of the use of the
array of human services that children with FASD
may receive. Several studies have reported on the
use of special education among children with
FASD.12,13,15,22 For example, educational aid use
was reported by 42% and 67% of children in two
different samples.12,13 The studies on this topic
often include individuals from a broad range of
ages, making it difficult to assess whether support
through schools is being received in the early
years.
Although the existing studies are important
contributions to a sparse field of research, few
explore the mental health care or the combination
of services received by children with FASD. An
exception is a small study of foster and adoptive
families of children with FASD in which seven
out of fifteen families received behaviour
management consultants for their child.23 In
addition, some of these families received respite,
family therapy, or individual counselling.
The following preliminary inquiry identifies
service utilization patterns of young children with
FASD by considering a broad array of services
including mental health. Such information is
crucial for informing strategic efforts aimed at
enhancing service delivery.
The objectives of this study are:
1. to determine mental health and other
professional consultation, service use, and referral
patterns among children with FASD; and,
2. to compare these patterns with children with
ADHD.
METHODS
Data from this study were extracted from a larger
study investigating the integration of health and
JFAS Int 2006;4:e1 - Feb. 2006
© The Hospital for Sick Children 2006
Mental health and other service use by young children with fetal alcohol spectrum disorder
social services for young children with special
needs and their families. Details regarding the full
study
are
available
from
http://www.offordcentre.com/integration.
Setting
Data for this paper were obtained from
participants recruited from two specialty care
centres in Edmonton, Alberta, Canada: The
Preschool Assessment Service clinic at Glenrose
Rehabilitation Hospital (GRH), a tertiary care
rehabilitation center serving all ages, and the
Infant and Preschool Program at Child and
Adolescent Services Association (CASA), a
community-based provider of children’s mental
health services. Both GRH and CASA serve a
catchment area that includes Edmonton and the
area north of and including Red Deer,
approximately half the province of Alberta.
Sample and Procedures
Staff at the participating clinics mailed the
anonymous questionnaires to caregivers from
their client databases who had children born after
October 1, 1996, ,and had initial contact at the
centres between October 1, 2000 and October 1,
2002 (N = 765). Questionnaires were distributed
in a single mailing; 142 completed surveys were
returned for a response rate of 18.5%. The
research team had no access to patient identity or
records, which restricted the ability to send out
targeted second mailings to non-responders.
Data on children reported as having FASD or
ADHD were extracted from the respondents.
Fourteen respondents indicated their child had
been diagnosed with FASD (N=12) or alcoholrelated neurodevelopmental disorder (ARND)
(N=2); this group is designated as CFASD
(children with fetal alcohol spectrum disorder).
Fifteen caregivers indicated their child had been
diagnosed with attention-deficit/hyperactivity
disorder (ADHD); this group is designated as
CADHD (children with ADHD). In cases where
children were identified as having both ADHD
and FASD (n=3), they were included in the
CFASD group, as this would provide a more
conservative approach for investigating the
hypothesis that the FASD group would have
lower rates of mental health services use.
Measures
Data were collected through a parent self-report
service utilization questionnaire. Items covered
utilization of key service providers, referral
patterns, services and treatments received, and
concerns about services received. These items
were drawn from issues raised in qualitative
interviews with key stakeholders, including
parents, providers, and administrators, and also
from variables covered in other utilization studies.
Ten parents of children with special needs
participated in a pilot of the survey questionnaire
and provided feedback for further refinement of
the instrument.
Data Analysis
Univariate and bivariate analysis (chi-square with
Pearson’s continuity correction) are reported. In
addition, service utilization maps were
constructed to capture the service patterns of three
children with FASD and provide a pictorial
representation of service experiences of individual
cases.
Ethics
Ethics approval was obtained from the joint ethics
board of the Capital Health Region and the
University of Alberta. The mailed survey was
accompanied by a letter clearly describing it as
part of a research study in which participation was
voluntary and for which identifying information
was not collected; return of the completed
instrument constituted consent.
RESULTS
Child characteristics are presented in Table 1.
CFASD were more likely to be residing with
a foster parent (79%) than CADHD(13%)
(χ2= 15.435, p < .001). Caregivers were asked
to indicate whether their child had any of a list of
eight difficulties (Table 1). Over half the children
in each sample experienced behaviour, social, and
sleeping problems, with a mean of 4.6 problems
for CFASD (S.D. 1.2) and 4.3 problems for
CADHD (S.D. 2.2). The majority of children with
FASD also experienced developmental delays and
feeding problems.
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Mental health and other service use by young children with fetal alcohol spectrum disorder
TABLE 1 Characteristics of respondents’ children
Descriptor
Children with
FASD
% (n)
Children with
ADHD
% (n)
Sex
Male
50.0 (7)
66.7 (10)
Age
0-48 months
21.4 (3)
0 (0)
49-60 months
14.3 (2)
20.0 (3)
61 months and older
64.3 (9)
73.3 (11)
Parent
7.1 (1)
73.3 (11)
Foster Parent
78.6 (11)
13.3 (2)
Other
14.3 (2)
13.3 (2)
CASA*
64.3 (9)
73.3 (11)
GRH†
35.7 (5)
26.7 (4)
Disruptive Behaviour
78.6 (11)
93.3 (14)
Social Problems
78.6 (11)
80.0 (12)
Developmental
Delay
78.6 (11)
46.7 (7)
Sleep Disturbance
64.3 (9)
53.3 (8)
Feeding Problems
57.1 (8)
26.7 (4)
Receptive Language
Delay
50.0 (7)
26.7 (4)
Expressive Language
Delays
42.9 (6)
53.3 (8)
Toileting Problems
14.3 (2)
26.7 (4)
Relationship of
Respondent with Child
Location
Problems Experienced
*Child and Adolescent Services Association, Edmonton,
Alberta
†Glenrose Rehabilitation Hospital, Edmonton, Alberta
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Mental health and other service use by young children with fetal alcohol spectrum disorder
parents reported disruptive behaviours, 73% of
CFASD and 93% of CADHD consulted mental
health professionals. Among children with social
problems, 82% and 92% respectively saw mental
health professionals. All three CFASD with
comorbid ADHD had received mental health
services. On the whole, more CFASD saw
paediatricians than did CADHD.
Caregivers were asked to identify the professionals
their child had seen as well as their respective
sources of referral. Fewer CFASD accessed
mental health professionals than did CADHD
(Figure 1). Although the differences were not
significant, in part due to the small sample size,
this trend was seen in each type of mental health
professional (psychiatrist, psychologist, mental
health/behaviour therapists). Of children whose
Family
Doctor
Speech and Occupational Pediatrician Psychiatrist
Language
Therapist
Pathologist
8 6 .7
Mental
Health or
Behaviour
Therapist
3 5 .7
4 6 .7
5 0 .0
6 0 .0
6 4 .3
8 0 .0
5 7 .1
4 6 .7
6 4 .3
7 1 .4
6 0 .0
7 8 .6
8 0 .0
100
90
80
70
60
50
40
30
20
10
0
7 8 .6
8 6 .7
P e rc e n t a g e o f c h i l d re n v i s i t e d (% )
FIG.1: Frequency distribution of the professionals seen by children with FASD and with ADHD
Psychologist Any Mental
Health
Professional
Professional seen
Children with FASD (N=14)
Referrals to mental health professionals originated
from a variety of sources. In the ADHD group, 19
referrals to mental health specialists were made by
paediatricians or family doctors, while only five
such referrals were made by these professionals in
Children with ADHD (N=15)
the FASD group (Figure 2). Also of note is that
four parent/guardian self referrals to mental health
were made for CFASD, while none were made in
the case of CADHD.
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Mental health and other service use by young children with fetal alcohol spectrum disorder
FIG. 2
Referrals to mental health care providers received by children with FASD and children with
ADHD from different professionals and service providers.
All CFASD who had received services from at
least one mental health professional had also seen
at least one other type of mental health
professional, a phenomenon we designate as
“service clumping,” that is, the tendency for
children to receive either multiple services and/or
consultations or no services and/or no
consultations. In this case, a child either saw
multiple mental health professionals, or no mental
health professionals. As shown in Table 2, five
CFASD (35.7%) and four CADHD (26.7%) saw
at least one provider from each of the four
following categories: primary care (family doctor
6
and/or paediatrician), mental health care, speech
and language therapy, and social work. Several
children saw providers from two or fewer of these
categories (35.7% and 46.7% respectively) (Table
2). Caregivers were also asked about a series of
specific treatments and services. More CADHD
received medication than did CFASD, while more
CFASD received psychological assessments than
did CADHD (Table 3). Differences are not
statistically significant. Of the three children with
both FASD and ADHD, two had received
medication (66.7%).
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Mental health and other service use by young children with fetal alcohol spectrum disorder
TABLE 2 Number of multidisciplinary team components accessed by CFASD and CADHD
Numbe r of
multidisciplinary team
components accessed by
child*
CFASD
% (n)
CADHD
% (n)
One
7.1 (1)
0.0 (0)
Two
28.6 (4)
46.7 (7)
Three
28.6 (4)
26.7 (4)
Four
35.7 (5)
26.7 (4)
*Four multidisciplinary team components include: Primary Care Physician (paediatrician and/or family doctor), Mental Health
Professional (psychiatrist, psychologist, behaviour therapist/mental health therapist), Speech and Language Therapist, and Social
Worker.
Figures 3, 4, and 5 are service utilization maps
depicting the service experiences of three children
with FASD. In Figure 3, the family doctor acts as
a single entry point to the service system, making
multiple referrals to diverse services in order to
meet the child’s needs. The linkage of the child’s
social worker to these providers is unknown.
Figure 4 shows a different pattern, where multiple
professionals made multiple referrals and there is
no clear pathway to mental health or other care.
Three separate entry ways into the system were
reported: two paediatricians, a social worker, and
the caregiver herself. The child in Figure 5 has
TABLE 3
Assessments and treatments received by children with FASD and with ADHD
Assessments
Treatments
Other
Services
accessed a variety of health professionals through
two service entry points, but did not obtain any
mental health services. The questionnaire also
asked caregivers to identify difficulties they had
experienced in receiving services for their child.
Over half of caregivers for both groups of children
indicated that “repetition of their child’s story”
and “lack of information about available services”
were problems in care. Seventy-one percent of
caregivers of CFASD cited “navigating the health
and social services systems” as a concern, while
only 40% of caregivers of CADHD reported this
problem.
Children with FASD
% (n)
Children with ADHD
% (n)
Genetic
0.0 (0)
13.3 (2)
Hearing
78.6 (11)
73.3 (11)
Psychological
78.6 (11)
53.3 (8)
Speech and Language
Therapy
57.1 (8)
60.0 (9)
Occupational Therapy
50.0 (7)
40.0 (6)
Medications
50.0 (7)
73.3 (11)
Daycare
35.7 (5)
33.3 (5)
Respite
57.1 (8)
40.0 (6)
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Mental health and other service use by young children with fetal alcohol spectrum disorder
FIG.3
FIG. 4
Professional referral pattern for a 37 month old male with FASD
Professional referrals for a 58 month old child with FASD, post-traumatic stress disorder,
and reactive attachment disorder.
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Mental health and other service use by young children with fetal alcohol spectrum disorder
FIG. 5
Professional referrals for a 72 month old boy with FASD
CONCLUSIONS
The findings suggest that young children with
FASD receive variable services. Some of these
services include seeing a mental health
professional. However, there appears to be no
clear pathway to mental health providers.
Furthermore, some children who may have
benefited from these services had not received
them.
In our sample, children with FASD were less
often referred to mental health professionals by
primary care physicians when compared to
children with ADHD. Without additional
information, it is difficult to understand this
pattern. Certainly paediatricians with their
specialized knowledge of children, as well as
certain family doctors, may address some of the
children’s mental health needs without needing to
access a mental health specialist. There may also
be concerns that primary care doctors may miss
some mental health problems. Several studies
have noted the low detection rate of mental health
problems in primary care practice.24-26 Although
some children with FASD are accessing an array
of professionals and services from different
disciplines, it is unknown to what degree these
different professionals were working together as a
multi-disciplinary
team,
as
per
several
recommendations.6,16,17 In addition, a number of
children failed to receive involvement from a
range of disciplines. Given the lack of clinical
data available to this study, it is unknown whether
this reflects an appropriate response to different
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Mental health and other service use by young children with fetal alcohol spectrum disorder
needs within the population of CFASD, including
some whose management may appropriately be
handled by a single health care professional.
The complex referral patterns seen among
these children may be a concern. There does not
appear to be any clear standardized pathways for
accessing services. Multiple entry points in a
system may have certain advantages, such as a
greater flexibility in gaining entry to some
services. For example, some mental health
services do not require physician referral; hence
the failure to recognize a mental health problem
by the primary care doctor may not be a barrier if
caregivers can refer their own child. However,
this then requires the caregiver to identify the
mental health problem and to know how to selfrefer to such services. Multiple entry points can
also be confusing to the caregiver attempting to
obtain services. Some children may fall through
the proverbial cracks, causing delays in
interventions, which could cause a significant
difference in their health outcomes. It is unknown
to what degree the relatively new centralized
intake system for child mental health services in
Edmonton, Canada is assisting children with
FASD and their caregivers.
There are several limitations to this pilot
inquiry. First, the sample size is small, resulting in
unstable estimates and inadequate power for some
assessments of differences between groups and
correlates between variables. Second, given the
overall low response rate, it is unknown whether
these children represent the population evaluated
at specialty centres. Third, as the children were all
recruited from specialty centres, they are by
definition
connected
to
at
least
one
service/provider. Children not attending specialty
centres are likely to receive less total services,
including mental health care, than the children in
this study. Fourth, there is a reliance on caregiver
self-report. As surveys were anonymous, consent
for the consultation of medical records could not
be attained. There is limited knowledge on the
accuracy of recall of service receipt by caregivers,
and in particular, foster parents. However, it is
often foster parents, in conjunction with social
services, who seek diagnostic services for children
with FASD. By studying young children with a
limited service history, caregiver recall problems
may be reduced. Fifth, more detailed service
information was not available, such as the
presence and extent of teamwork between
providers or the number of visits made by a child
to each of the professionals.
Despite these limitations, this preliminary
analysis suggests many avenues for further
inquiry. There is a pressing need for the
systematic collection of service utilization
information on children with FASD and other
high risk children in order to adequately
understand our present state of service delivery
and to provide empirical data to guide system
reform. Particular attention should be given to the
access to and use of mental health services among
children with FASD, given the high rates of
mental health problems. In addition, concomitant
collection of clinical and functional information
on these children over time is essential for the
assessment of the impact of the present array of
services offered these children and their families.
Such information is crucial for service providers,
service and policy decision-makers, caregivers,
families, and advocates of children with FASD.
Corresponding Author: [email protected]
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