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Parents' perceptions of autism and their
health-seeking behaviors
Maria Isabel O. Quilendrino a,*, Mary Anne R. Castor a,
Nenacia Ranali Nirena P. Mendoza b, Jacqueline R. Vea c,
Nina T. Castillo-Carandang c
a Department of Clinical Epidemiology and Department of
Pediatrics, College of Medicine, University of the Philippines,
Manila, Philippines
b Department of Clinical Epidemiology and Department of
Family and Community Medicine, College of Medicine,
University of the Philippines, Manila, Philippines
c Department of Clinical Epidemiology, College of Medicine,
University of the Philippines, Manila, Philippines
c l i n i c a l e p i d e m i o l o g y a n d g l o b a l h e a l t h 3 (
2 0 1 5 ) s 1 0 – s 1 5
a r t i c l e i n f o
Article history:
Received 15 September 2015
Accepted 13 November 2015
Available online 7 December 2015
Keywords:
Autism
Autistic disorder
Behavior
Perception
a b s t r a c t
Background: Parents' health-seeking behaviors, which in turn
may be related to their per-
ceptions, are hypothesized to be the major determinant of the
timing of diagnosis and
subsequent intervention for children with autism.
Objective: The primary objective of this study was to describe
parental perceptions of autism
and health-seeking behaviors for urban Filipino children aged
2–6 years.
Methods: This was a cross-sectional study conducted in several
phases. The first phase
involved collection of qualitative data from key informant
interviews and small group
discussions. The second phase involved the development of a
validated and reliable ques-
tionnaire, which was administered to 41 parents of children with
autism, aged 2–6 years.
Results: Parents had varying perceptions of autism. They were
generally undecided with
regard to the etiology of autism, but were in agreement that
psychosocial factors, such as
parental sins and curses, were unlikely to be associated with
autism. The most common
presenting symptom noted by parents was a qualitative
impairment in social interaction.
There was a noted trend towards earlier age of symptom
recognition (mean of 24 months)
and diagnosis of autism (mean of 39 months) among parents
with younger children.
Conclusion: The results of this study showed some trends:
There is improved awareness
regarding autism and the needs of children with autism. Parents
tend to disagree with
previous myths about autism. There was an observable trend
toward earlier diagnosis for
this group.
# 2015 INDIACLEN. Published by Elsevier, a division of Reed
Elsevier India, Pvt. Ltd. All
rights reserved.
* Corresponding author. Tel.: +63 9178033888; fax: +63
27311631.
E-mail address: [email protected] (M.I.O. Quilendrino).
Available online at www.sciencedirect.com
ScienceDirect
journal homepage: www.elsevier.com/locate/cegh
http://dx.doi.org/10.1016/j.cegh.2015.11.003
2213-3984/# 2015 INDIACLEN. Published by Elsevier, a
division of Reed Elsevier India, Pvt. Ltd. All rights reserved.
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c l i n i c a l e p i d e m i o l o g y a n d g l o b a l h e a l t h 3 (
2 0 1 5 ) s 1 0 – s 1 5 S11
1. Introduction
It can be said that autism is no longer a rare disorder, yet at
present, it is still incompletely understood. A 5-year review of
developmental referrals to a tertiary government hospital in
Manila showed that autism ranked second, next to global
developmental delay and mental retardation, as the top
diagnoses for referrals.1
The increasing prevalence of autism may be reflective of
either a true increase in the number of cases or any of the
following: increased societal awareness, changing diagnostic
criteria, and better access to educational services.2 Presenting
problems of the disorder vary greatly depending on the
developmental level and chronological age of the individual.3
Although early identification is encouraged by healthcare
professionals, a significant lag between age at first parental
concern and age at first ASD diagnosis is consistently reported
in the literature.4 While much about autism is unclear, the
importance of early intervention for such children is almost
universally acknowledged. Early detection and intervention
are critical in altering the disabling trajectory of autism.1
Parents are usually the first to recognize signs of autism.
Parents' perceptions and beliefs may drive their health
behaviors – whether to seek formal evaluation or choose to
wait. Recognition of a problem is the first step of the process.5
Researches show that early signs of autism were reported as
early as 1 year of age6 and that autism can be reliably
diagnosed by 2 years of age, and yet the mean age of diagnosis
for autism is generally delayed. A study done in the
Neurodevelopmental Section of the Philippine Children's
Medical Center showed that the mean age of recognition is
1.8 years and the interval between the onset of symptoms and
referral is 2.6 years.7 The most common manifesting symptom
and reason for referral was language delay.
Parents' health-seeking behavior is an essential driving
force in determining the length of this period. Understanding
the effect of parental perceptions on their health-seeking
behavior would aid in developing targeted interventions
aimed at addressing these perceptions in order to modify
behavior geared towards shortening the period from symptom
recognition to formal diagnosis.
A local study on factors implicated in the delayed
consultation of children with neurodevelopmental disabilities
cited parental factors as a main reason for delays in
consultation. These parental factors were related to parents'
beliefs or hope that their children will eventually catch up,
general lack of knowledge regarding normal child develop-
ment, and lack of funds.8
An analysis of a large sample of US children born in 1994
found that being male, having a low IQ, and experiencing
developmental regression were all associated with earlier
diagnosis for children.9 Children with more educated parents
were diagnosed earlier. Having a mother born outside the USA
and being first born were also associated with later diagnoses.
Children with higher communication function were diagnosed
much later than those with lower function.8 A local study in an
urban low income community in Manila showed that parents'
educational level affected the rate of reporting of develop-
mental concerns, and that parents were more tolerant of
delays in language development when the child was either a
male or less than 2 years of age.10
Parents cited a range of explanations to account for their
son's or daughter's disability, including birth trauma and
illness during pregnancy. Some parents also expressed beliefs
that do not conform to biomedical explanations, but drew on
magical or religious beliefs. A sense of guilt was featured
in many parents' descriptions. Some parents believed that
autism was a punishment for past mistakes, whereas parents
who ascribed to a biomedical explanation of autism perceived
a responsibility for passing on faulty genes to their child with
autism. Gray concluded that these explanatory models
enabled parents to make sense of autism and facilitated their
ability to cope.11 Parental views regarding the causes of autism
are shown to affect their health practices for their children.
The view that vaccines (thimerosal; measles, mumps rubella
[MMR] vaccines) were behind the autism issue led to mistrust
of physicians, a decrease in vaccination rates, and an increase
in antivaccine movements in many countries, leading to
outbreaks of vaccine-preventable diseases.12
Parental perceptions of autism are embedded in various
biomedical, social, psychological, economic, and cultural
constructs. Understanding parental explanatory models can
help demystify autism, and foster a mutually trusting,
collaborative approach for the child's total care.
2. Objectives
The general objective of the study was to determine the
association between parental perceptions of autism and their
health-seeking behaviors. Specific objectives were to explore
parents' understanding of autism, identify parental or child
factors associated with perceptions on autism, illustrate
the timeline from symptom recognition, age of initial consult,
up to formal diagnosis, and determine the most common
presenting symptoms that parents recognize in children
diagnosed with autism.
3. Methods
3.1. Study design
This was a cross-sectional study conducted in two phases. The
first phase involved development of a valid and reliable
questionnaire. The second phase was a survey on parents'
perceptions on autism and their health-seeking behaviors.
3.2. Study population and setting
A convenience sample of parents were recruited through
institutions within Metro Manila – parent organizations,
schools,
clinics, and therapy centers – involved inthe care of children
with
autism, during the period from June to August 2013.
3.2.1. Inclusion criteria
Participants of this study were parents living with their child/
children aged 2–6 years old who has/have been previously
diagnosed with autism by a child development specialist.
Table 1 – Demographic characteristics of parent respon-
dents in the focus group discussions and survey.
Focus group
discussions
(n = 15)
Survey
(n = 41)
Age in years (mean � sd) 39 � 7 36 � 6
% female 9/15 (60%) 34/41 (83%)
% married 13/15 (87%) 30/41 (73%)
% employed 7/15 (47%) 23/41 (56%)
Number of children with autism:
1 8 41
2 1 0
Table 2 – Profile of children with autism of parent
respondents in the focus group discussions and survey.
Focus group
discussions
(n = 10)
Survey
(n = 41)
Age in months
(mean � sd)
75.43 � 33.74 60.73 � 17.45
% male 7/10 (70%) 36/41 (87.8%)
Birth rank 5/10 (50%) firstborn 21/41 (53%)
firstborn
Fetal maturity 8/10 (80%) term 39/41 (96%) term
Mode of delivery 7/10 (70%)
normal delivery
25/41 (60%)
normal delivery
c l i n i c a l e p i d e m i o l o g y a n d g l o b a l h e a l t h 3 (
2 0 1 5 ) s 1 0 – s 1 5S12
3.2.2. Exclusion criteria
Parents of children diagnosed with other pervasive develop-
mental disorders were excluded from the study.
3.3. Data collection
3.3.1. Phase 1
Both qualitative and quantitative methods were utilized during
this phase. Key informant interviews (KIIs) were conducted
with two developmental pediatricians and one parent who was
the president of the University of the Philippines College of
Allied Medical Professions (UP CAMP) chapter of the Autism
Society of the Philippines (ASP). Two focus group discussions
(FGDs) were conducted. The first FGD comprised of parents of
children with autism being seen at the Development and
Behavioral Studies Unit of the Philippine General Hospital. The
second FGD was attended by parent members of the ASP.
Data from the KIIs and FGDs were utilized to generate a
valid and reliable questionnaire. Reliability was tested on 99
parent-respondents.
3.3.2. Phase 2
The questionnaire generated from phase 1 was administered
to 41 parents of children with autism, ages 2–6. A sample of 33
parents of children with autism was required to estimate the
mean age at diagnosis of autism with a 1-year margin of error
at 95% confidence level, and assuming a standard deviation of
2.9 years. The mean age at diagnosis was used in the
computation of the sample size because early diagnosis and
intervention is one of the most crucial points in the manage-
ment of children with autism.
3.4. Statistical analysis
Statistical analyses were performed using StataCorp. 2011.
Stata Statistical Software: Release 12. College Station, TX:
StataCorp LP. Thematic analysis was performed on qualitative
data. Pearson's correlation and Cronbach's alpha were utili zed
during reliability testing of the questionnaire. Descriptive
statistics were reported in means and proportions. Associa-
tions between categorical variables were tested using Chi -
square statistic. For continuous variables, correlation analyses
were done.
3.5. Ethical considerations
Written informed consent was obtained from all participants.
They were assured of confidentiality, privacy and anonymity.
Recruitment was done by investigators who had no profes-
sional relationship with the participants.
4. Results
4.1. Reliability of questionnaire
The 22 items in the scale on parental perceptions on autism
were grouped into four general domains: (1) initial attitudes
towards autism, (2) perceived parental psychosocial factors
associated with autism, (3) perceived parental biologic causes
of autism, and (4) perceived child-related factors associated
with autism. A negative correlation in one item was accounted
for by a positive statement (compared to others that were
negatively stated), and hence was recoded. In the final
questionnaire, all 22 items were retained.
4.2. Demographic characteristics
There were 3 respondents for the KIIs, 15 (6 parent-pairs and 3
parents who attended without their partners) for the FGDs,
and 41 for the survey. The demographic characteristics of the
parent respondents in the FGDs and survey are shown in
Table 1. The mean age was 39 years for the FGD group and
36 years for the survey group. Majority of the respondents in
both groups were female and married. Roughly, half of the
respondents in both groups were employed. There was one
respondent in the KII and one in the FGD who had two children
with autism.
The parent-respondents represented a total of 10 children
with autism in the FGD group and 41 children in the survey
group (Table 2).
4.3. General knowledge and parental perceptions on
autism
4.3.1. Qualitative analysis from KIIs and FGDs
Since two of the respondents in the KIIs were child develop-
ment specialists and one was a highly informed parent,
they all had scientific views about autism. They defined autism
as a triad of conditions involving impairments in communi -
cation and social skills, as well as restricted, repetitive, and
stereotyped patterns of behavior. They claimed that no specific
c l i n i c a l e p i d e m i o l o g y a n d g l o b a l h e a l t h 3 (
2 0 1 5 ) s 1 0 – s 1 5 S13
cause has been directly linked to autism, nor is there a cure for
the condition, to date. However, they all agreed that early
intervention has been shown to produce optimum results for
children with autism.
During the FGDs, the parents were asked about their initial
thoughts and perceptions about their child's behavior. Their
answers revolved around the following: they were initially
afraid to be told that their child had autism, many were in
denial, other parents blamed one another, and many were
hoping for their children to catch up with others. The parents
had varied views about possible causes of autism. Some of the
answers given were hereditary, old age of one or both parents,
absence of one parent while growing up, maternal stress or
drug intake during pregnancy, vaccines particularly MMR,
short time interval between birth of two children, and mercury
content of food. The parents were still generally confused as to
how their child acquired the condition.
Since the respondents of this study were recruited through
institutions/centers catering to children with autism, they had
access to various types of interventions, which included one
or a combination of the following: speech, occupational or
physical therapy, special education, medicines, and develop-
mental monitoring. The parents had mixed responses with
regard to satisfaction with these interventions. Some noted
marked improvements in their child's behavior while others
only noted minimal changes.
Many of the parents had to give up their career/work to take
care of their child. They were often worried about growing old,
and concerned about ‘‘who will be there to help and support
them?’’ There were also those who clamored for better support
from the government for persons with autism.
4.3.2. Quantitative analysis from survey
Parental perceptions on autism were elicited during the survey
through 5-point Likert scale items grouped into four general
domains. A mean score of greater than 4 for each item meant
that they generally disagreed with that statement.
In terms of parental attitudes on autism, the parents agreed
with the statements that they initially thought their child
would eventually catch up with other children, they were
initially in denial of the diagnosis, and were afraid of receiving
an official diagnosis.
For parental psychosocial factors, parents reported that
lack of finances and long waiting period prior to being seen by
a
specialist hindered them from seeking professional consult.
They disagreed with the statements that autism can be caused
by a curse or is a consequence of parental sin/s.
The mean scores of the respondents were neutral in terms
of parental biologic factors, which can cause autism, i.e.
autism is hereditary, eating mercury-contaminated food by
Fig. 1 – Timeline from initial recognition of symptom
the mother during pregnancy, maternal stress, illness or
trauma during pregnancy, and late age of one or both parents.
In the same manner, responses were also neutral for
statements on child-related factors, which can cause autism,
i.e. complications acquired during and after childbirth,
vaccination in children, childhood illness or trauma before 1
year of age, and intake of certain food by the child.
4.4. Parental health-seeking behaviors
4.4.1. Qualitative analysis from the FGDs
During the FGDs, the more commonly observed initial
symptoms of autism were no speech or delayed speech, lack
of interaction, nonresponse when called, playing alone, and
lack of eye contact. Parents, or close family and friends, were
the first to notice most of the signs of autism. Their first initial
professional consult was with a general pediatrician and the
children were mostly aged 2 at the time of first consult. Most
of the children underwent hearing tests to rule out a hearing
defect. Some parents were unable to bring their child
immediately to a specialist for the following reasons: lack of
finances, lack of knowledge on who to consult, or a long
waiting time (sometimes as long as 6 months) for an
appointment with a developmental pediatrician.
4.4.2. Quantitative analysis from survey
From the survey on 41 parents, the first recognized impair-
ments in their child with autism were qualitative impairment
in social interaction (54%), qualitative impairment in commu-
nication (34%), and restrictive, repetitive stereotyped patterns
of behavior (12%).
Family members/relatives were usually the first persons to
recognize the child's symptoms (78%), followed by friends or
neighbors (8%), teachers (7%), and doctors (7%).
After recognition of symptoms, 34% of the parents each
initially sought the opinion of a general or developmental
pediatrician. There were parents who also consulted relatives
or the internet (7% each); teachers, neurologists, or friends (5%
each); and religious leaders (2%).
The diagnosis of autism in their children was confirmed by
developmental pediatricians in most cases (83%), and the rest
by
general pediatricians (7%), neurologists (7%), and therapists
(3%).
Majority of the parents (68%) no longer sought a second
opinion.
The mean age of the children at the time the initial
symptoms was recognized was 24.42 months. First professional
consult was sought at a mean age of 37.56 months; hence, there
was a delay of 13.15 months. The mean age at confirmation of
the diagnosis is 39.39 months, which is 14.98 months after
initial
recognition of symptoms. The interval from first professional
consult to confirmation of the diagnosis is 1.83 months (Fig. 1).
s to first consult and confirmation of diagnosis.
c l i n i c a l e p i d e m i o l o g y a n d g l o b a l h e a l t h 3 (
2 0 1 5 ) s 1 0 – s 1 5S14
Most of the children (54%) were diagnosed at less than or
equal to 36 months and 46% were diagnosed at more than 36
months.
There were no significant associations noted between
baseline characteristics of parents or children and parental
perceptions, nor between parental perceptions and their
health-seeking behaviors.
5. Discussion
5.1. Parental perceptions on autism
The parental attitudes with regard to their child's attitude or
initial symptoms were similar for the FGD and the survey.
Most of them were in denial and had hopes that their child
would eventually catch up; they were afraid of getting an
official diagnosis of autism for their child. Most parents
continue to hope that their child would eventually catch up
with the other children. When asked about their fears,
majority expressed concerns about the care of their children
in their old age.
Parents in the study generally recognize that autism is a
condition that is not yet fully understood, even by the
scientific community. During the FGDs, biological causes
surfaced more than psychosocial causes. The views were
varied since these were combinations of what they heard
from other people, what they read about autism from
internet sources, and what they learned from the medical
practitioners they have consulted. The questionnaire was
designed to ask the parents about their initial perceptions
regarding autism prior to seeking consult, including what
they thought about the presenting symptoms. However,
parents' recall may be tainted with their current knowledge
of autism. The views expressed by the participants may not
be the same for the general public whose children have yet to
be diagnosed.
In the qualitative survey, most responses were neutral –
they neither agreed nor disagreed. This reflects the uncer -
tainty that prevails in their minds with regard to the etiology
of autism. Despite the uncertainty in the etiology of
autism, parents were in strong agreement that autism is
not due to a curse nor a consequence of parental sin/s.
Parents in the study may no longer bear the same stigma of
the parents in the past, where developmental and mental
handicaps were blamed on faulty parenting styles or
parental debts for their infractions. Majority of the parents
in the FGD and the survey have a general idea that genes and
the environment play a role in the phenotypic variability of
autism.
The present study showed that parents have different
sources of information regarding health. Filipinos generally
value the opinion of relatives and friends although majority of
the respondents reported to a professional right away. A new
and readily available source of informa tion for parents
nowadays is the internet. Parents recognize the wealth of
information available at their fingertips, so much so that a few
parents in the study were able to reliably suspect autism in
their child even before a professional consult.
5.2. Parental health-seeking behaviors
Majority of parents in both the FGD and the survey noted
impairment in social interaction and in communication as the
initial symptoms of their children, majority of which were
noted by family members and relatives. Impairment in social
communication is more compatible with past researches7
than the result from the survey, which suggested impairment
in social skills (54%) as the more common presenting
symptom. Since the lack of appropriate language skills is
usually a more obvious symptom, this new finding may
suggest that parents may now be more keen in noting more
subtle problems like poor social skills.
Majority of the parents in the FGD group sought the opinion
of general pediatricians for their children's symptoms.
Initial symptoms were recognized at around 2 years old.
First professional consult was sought at a mean age of 2.9
years in the FGD and 37.56 months or 3.13 years in the survey.
There was a delay of roughly 3 months in the FGD group
and 13.15 months in the survey group. The mean age at
confirmation of the diagnosis in the survey is 39.39 months,
which is 14.98 months after initial recognition of symptoms.
This was mostly done by developmental pediatricians. Much
of the delay was in the initial consult. Surprisingly, the
authors did not see a long waiting period between the initial
consult and confirmation of diagnosis in the survey. In the
survey, the time difference between the initial consult and
confirmation of the diagnosis was only 1.83 months. General
pediatricians, as well as teachers, may also have a lower
threshold for referral to a developmental pediatrician. This
trend supports the call from many stakeholders to facilitate
early diagnosis. Some parents in the FGD groups, however,
were unable to bring their child immediately to a specialist
due to lack of finances, lack of knowledge on who to consult, or
a long waiting time for an appointment with a developmental
pediatrician.
There was a trend for earlier initial consult in both the FGD
and survey groups. This implies several things: (1) parents are
more aware of and are more open to reporting developmental
concerns, (2) heightened societal awareness has made it easier
for parents, clinicians, and other adults to identify problematic
behaviors in children, (3) families may have better access to
diagnostic services in the recent years compared to the past
decade. There is an apparent drop in the age of diagnosis of
these children, compared to previous studies.7 This pattern
was also reported by Fountain et al. in their study that showed
a decline in the median age of diagnosis for autism, from 4.4
years in 1992 to 3 years in 2001.13
Many of the parents in this study were open in sharing,
were resourceful, empowered, and actively engaged in their
child's care. The researchers also observed the relevance of
having a support group for families, such as the ASP, which has
become a venue for social and educational support for families
living with autism.
The results of this study showed some surprisingly
encouraging trends. Parents, particularly those whose chil-
dren are already enrolled in schools and therapy centers, are
more aware about the intricacies of autism. They tend to
disagree with previous myths about autism. There was a
notable tendency for earlier diagnosis among the urban
c l i n i c a l e p i d e m i o l o g y a n d g l o b a l h e a l t h 3 (
2 0 1 5 ) s 1 0 – s 1 5 S15
parents in the study. Despite this, however, the mean age at
formal diagnosis is still a little older than the recommende d
age of 36 months or less. Indeed, there is still much room for
improvement in terms of timing of diagnosis. It is important to
note at this point, however, that early diagnosis does not
necessarily equate to early intervention. Future studies
focusing on the timing of intervention among children with
autism in the Philippines would yield relevant information.
This study was able to capture parents whose children were
already receiving active interventions for their condition, and
thus possibly accounting for the promising trends mentioned
earlier. The researchers recommend actively searching out
those children (and their parents) who are already exhibiting
symptoms of autism but have not yet entered the healthcare
system. This population might reveal an entirely different
story and possibly highlight other areas of concern. The work
for children with autism is far from finished. There is still
much need for collaborative efforts among different sectors for
the welfare of this special population.
Conflicts of interest
The authors have none to declare.
r e f e r e n c e s
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developmental pediatrics section of a major tertiary
hospital. Acta Medica Philippina. 2009;43(3):12–17.
2. Carbone P, Davis T, Farley M. Primary care for children with
autism. Am Fam Physician. 2010;81(4):454–460.
3. Volkmar F, Chawarska K. Autism in infancy and early
childhood. Annu Rev Psychol. 2005;56:315–336.
4. Wiggins L, Balo J, Rice C. Examination of the time between
first evaluation and first autism spectrum diagnosis in a
population-based sample. J Dev Behav Pediatr. 2006;27:79–87.
5. Daley C. From symptom recognition to diagnosis: children
with autism in urban India. Soc Sci Med. 2004;58(7):1323–
1325.
6. Pierce K, Carter C, Weinfeld M. Detecting, studying, and
treating autism early: the one-year well baby check-up
approach. J Pediatr. 2011;159:458–465.
7. Avendaño EL, Berroya MAG, Ortiz MH, et al. A profile of
pervasive developmental disorders. Philipp J Neurol. 1998.
8. Moral-Valencia M, Tanglao-Salazar N, De Sagun R, et al.
Factors implicated in delayed consultation of children with
neurodevelopmental disabilities. St Tomas J Med. 2004;52
(1):16–23.
9. Shattuck P, Durkin M, Maenner M, et al. Timing of
identification among children with autism spectrum
disorder. J Am Acad Child Adolesc Psychiatry. 2009;48:474–
483.
10. Quilendrino MI. Screening and evaluation for early
language
delay in children 12 to 36-months old in an urban
community health center. Philippine General Hospital,
October 2011, unpublished.
11. Gray D. Lay conceptions of autism: parents' explanatory
models. Med Anthropol. 1995;16:99–118.
12. Greydanus DE, Toledo-Pereyra LH. Historical perspectives
on autism: its past record of discovery and its present state
of solipsism, scepticism and sorrowful suspicion. Pediatr Clin
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pcl.2011.10.004.
13. Fountain …
4
Discussion 3: Higher Education Institution Policy Proposal
Author’s Name
Institutional Affiliation
Course Name
Instructor
Due Date
Discussion 3: Higher Education Institution Policy Proposal
According to Farber (2016), enrollment in colleges is
continuously declining. This trend can be attributed to various
factors such as failure to be accepted to one's school of choice,
high tuition, and low diversity, among others. Hence,
institutions are seeking ways of increasing students' enrollment
rates. In this regard, a faculty in the business school can offer a
vital perspective in enacting such changes in an institution since
it facilitates direct interaction between administrators and
students. There are three major themes, which higher education
administrators should address if they want to increase students'
access to higher education. First, there is the rise of online
degree programs, which offers one with the flexibility to learn
from remote locations at convenient times. Second, there is the
aspect of diversity, which makes people from various
backgrounds feel valued in an instituti on. Finally, there is the
issue of high tuition fees, which locks out students from low
socioeconomic backgrounds.
A policy that a faculty in a business school can enact to enhance
students' access to affordable and high-quality education is to
offer high-quality degree programs on online platforms.
Currently, there is a limited number of quality degree programs
that can be accessed on online platforms. However, an
institution that fully adopts online programs can cover all the
three themes identified above. Online applications will ensure
that there is no limit to the number of students that can enroll in
an institution since there are no considerable infrastructure
demands to host the learners. Such a policy will ensure that a
student can enroll in an institution of his/her choice at
considerably low tuition rates. More so, such a system will
increase diversity in a learning institution. For lessons that
require practicals, the institution can liaise with local partners
so that there is a schedule on when a batch of students goes for
practicals. A faculty in a business school is best placed to
consider the logistics of student learning in such a setup.
Reference
Farber, M. (2016). College enrollment dips as more adults ditch
degrees for jobs. Retrieved from
https://fortune.com/2016/12/19/college-enrollment-decline/
Review Article
Parent Training Interventions for Toddlers
with Autism Spectrum Disorder
Audrée Jeanne Beaudoin, Guillaume Sébire, and Mélanie
Couture
Université de Sherbrooke, Sherbrooke, QC, Canada J1H 5N4
Correspondence should be addressed to Mélanie Couture;
[email protected]
Received 23 January 2014; Revised 25 March 2014; Accepted
12 April 2014; Published 7 May 2014
Academic Editor: Manuel F. Casanova
Copyright © 2014 Audrée Jeanne Beaudoin et al. This is an
open access article distributed under the Creative Commons
Attribution
License, which permits unrestricted use, distribution, and
reproduction in any medium, provided the original work is
properly cited.
Background. Now that early identification of toddlers with
autism spectrum disorder (ASD) is possible, efforts are being
made
to develop interventions for children under three years of age.
Most studies on early intervention have focused on intensive
and
individual interventions. However, parent training interventions
that help parents interact and communicate with their toddlers
with ASD might be a good alternative to promote the
development of their child’s sociocommunicative skills.
Objective. This review
aims to systematically examine (1) the use of parent training
interventions for children with ASD under three years of age
and
(2) their effects on children’s development, parents’ well -being
and parent-child interactions. Methods. Systematic searches
were
conducted to retrieve studies in which at least one parent was
trained to implement ASD-specific techniques with their
toddlers (0–
36 months old) with a diagnosis of or suspected ASD. Results.
Fifteen studies, involving 484 children (mean age: 23.26
months), were
included in this review. Only two of them met criteria for
conclusive evidence. Results show that parents were able to
implement
newly learned strategies and were generally very satisfied with
parent training programs. However, findings pertaining to the
children’s communication and socioemotional skills, parent-
child interactions, and parental well-being were inconclusive.
1. Introduction
Autism spectrum disorder (ASD) is characterized by difficul -
ties in social interaction and communication and by repeti -
tive and stereotyped behaviors. With an estimated prevalence
of up to 1/88 children in the US [1], ASD is amongst the
most frequent and severe developmental disorders. In the
United States, ASD is associated with an estimated annual
cost between 35 and 90 billion dollars [2, 3].
In response to parents’ concerns about their child’s
development that are present as early as 12 months of age [4],
knowledge about and strategies to identify young toddlers
with ASD are emerging [5]. It is now possible to identify
a child with ASD in the first two years of life based on
sociocommunicative behaviors [6].
Now that early identification of toddlers with ASD is
possible, efforts must be made to develop interventions for
these young children. In 1987 and 1993, Lovaas and colleagues
first described the potential efficacy of early intervention for
children with ASD by reporting less restrictive school place-
ment and higher IQ in the group of children who received an
intensive behavioral intervention compared to children in the
control group [7, 8]. More recently, early interventions have
been associated with greater developmental gains and more
reduction in autistic symptoms than interventions provided
later on [9, 10]. Reilly and colleagues [11] reported that typi -
cally developing children between 12 and 24 months of age go
through an important period of development that results in
more advanced social communication abilities. Interventions
in this time frame are crucial to prevent an increase in
the gap between children with ASD and their typically
developing peers [12]. Also, the significant neuroplasticity
in young children emphasizes the importance of very early
intervention [13]. In fact, many clinical studies [14–20] have
described the interaction between infants’ brains and their
social environment and its impact on the development of
infants’ social and language brain circuitry [12]. Knowing that
each experience influences the brain structure and function
of young children, interventions with toddlers with ASD
have the potential to influence their developmental trajec-
tories towards a more typical and behavioral development
[12, 13, 21].
Hindawi Publishing Corporation
Autism Research and Treatment
Volume 2014, Article ID 839890, 15 pages
http://dx.doi.org/10.1155/2014/839890
http://dx.doi.org/10.1155/2014/839890
2 Autism Research and Treatment
Most research on early intervention focused on early
intensive and individual interventions (20 to 40 hours per
week). Despite their demonstrated efficacy for preschoolers
with ASD [8, 22], intensive individual interventions are
expensive and time-consuming and were originally devel-
oped for children between three and five years of age who
have different learning needs than younger children. Infants
from 12 to 36 months of age have specific developmental
abilities and learning capacities, which require interventions
that are tailored to them. Parent training interventions may
be an effective alternative to support the learning capacities of
toddlers with ASD [23]. Moreover, parent training interven-
tions are based on language development in very young chil -
dren, which has been demonstrated to be dependent on the
language used by their parents [24]. Thus, teaching parents
how to interact and communicate with their toddlers with
ASD through parent training interventions might promote
the development of their child’s sociocommunicative skills.
Few researchers have reviewed the effect of parent train-
ing interventions specifically for young children with ASD.
At this time, most of the literature on early parent training
interventions for children with ASD focuses on children
under seven [25–27] or nine years of age [28]. No review
focusing on parent training interventions for toddlers under
3 years of age has been published to date. Given the previously
described potential benefits of very early parent-mediated
interventions, there is a need to understand if this type of
intervention is effective specifically for those young children.
This review aimed to systematically examine the use of parent
training interventions for children from 0 to 36 months of
age at risk of or with a diagnosis of ASD and their effects on
children and parents. In particular, the following questions
were addressed.
(1) What are the parent training programs used for
children from 0 to 36 months of age with a diagnosis
of or suspected ASD?
(2) What are the effects of parent training programs on
(a) child development, (b) parental well-being, and
(c) parent-child interactions?
2. Method
2.1. Search Procedures. Systematic searches were conducted
in May and June 2013 in four electronic databases: CINAHL,
ERIC, PubMed/Medline, and PsycINFO. The search was
limited to articles published in English or French in peer -
reviewed journals. Searches were conducted using combi-
nations of the three keywords (and synonyms): “autism
spectrum disorder” (e.g., autism, pervasive developmental
disorder), “toddlers” (e.g., infants, preschoolers, and early
intervention), and “parent training” (e.g., parent coaching,
parent-mediated intervention, and caregiver-mediated inter-
vention). We also searched in the Cochrane Database of
Systematic Reviews, looked in Google Scholar, and exam-
ined bibliographies of systematic and nonsystematic reviews
found in any of the six databases. Reference lists of articles
that met inclusion criteria were also examined to identify
articles that had not been found through electronic searches.
We found eleven additional studies using these alternative
procedures.
2.2. Inclusion and Exclusion Criteria. To be included in the
review, studies had to meet four inclusion criteria as follows:
(1) all children had to be at risk of or have had a diagnosis
of ASD (including pervasive developmental disorder,
autistic disorder, Asperger syndrome, and pervasive
developmental disorder not otherwise specified);
(2) more than 50% of the children had to be 36 months of
age or less at the time of recruitment (if this informa-
tion was not available, the mean age of participants
at recruitment had to be under 36 months) and all
children in the study had to be 5 years old or less;
(3) at least one parent (referring to fathers, mothers,
foster parents, grandparents, or other relatives) had
to be trained by an education or health professional
to use ASD-specific techniques to promote the child’s
development. Parents must have received ongoing
supervision and support from the professional. The
training could involve individual and/or group coach-
ing at home and/or in a clinic environment. Studies
that assessed different types of interventions (e.g.,
individual intensive interventions) were excluded
from the review if they did not report effects of parent
training interventions separately from other types of
interventions;
(4) effects of the intervention had to be reported by quan-
titative data. Quantitative data from mixed methods
studies could be included if they reported interven-
tion effects.
2.3. Data Extraction and Coding. Studies included in this
review were summarized in terms of (a) participant char-
acteristics, (b) dependent variables and measurement tools,
(c) intervention characteristics (including program type,
strategies, setting, frequency, duration, and goals), (d) inter -
vention outcomes (directly after intervention and at followup,
when appropriate) on children, parents, and parent-child
interactions, and (e) certainty of the evidence.
Parent training outcomes (effects on children, parents,
and parent-child interactions) were summarized as reported
in the original paper (i.e., pre-post change, statistical signif-
icance, or effect size). Considering that a systematic review
is a scientific tool that can be used by healthcare providers,
consumers, researchers, and policy makers [29] to “evaluate
existing or new technologies and practices efficiently and
consider the total available data” [30], outcomes in each
article were then classified into four categories (positive,
mixed, no, and negative effects) according to the magnitude
of changes due to parent training interventions. Previous
systematic reviews used the three first categories [31–33].
Results were classified as “positive” if visual analysis of the
results of single case studies showed an increase in abilities
for all participants between baseline and intervention or if
there was a statistically significant between-group difference
in experimental designs. “Mixed” results were defined as
Autism Research and Treatment 3
improvement in some but not all participants in single-
case designs or a trend short of statistical significance in
between-group designs. If no participants in single-case
studies benefited from the intervention or if there was
no statistically significant improvement in between-group
designs, results were classified as “no effects.” Finally, the
research team added a fourth category to the original 3-
level classification, namely, “negative” effects. Results were
classified as “negative” if visual analysis of the results of
single-
case studies demonstrated deterioration in abilities in most
participants between baseline and intervention or if there
was a statistically significant between-group difference in
favor of the control group in experimental designs. However,
none of the studies reviewed reported negative effects of the
intervention.
The studies’ methodological rigor could be assessed based
on several classification systems. The research team used a
3-level classification system (suggestive, preponderant, and
conclusive evidence) used in previous reviews [31, 32] to
summarize the level of evidence for each study reviewed.
“Suggestive” evidence was the lowest level of evidence. Studies
classified at this level did not use a true experimental design.
They might have used pre- or quasi-experimental designs
including an AB-design or pre-post intervention design
without a control group. The next level of certainty was “pre-
ponderant” evidence, which means that there was a strong,
but not irrefutable, conclusion. Studies included in this
second level of certainty needed to (a) use a true experimental
design, (b) have adequate interobserver agreement (i.e., at
least 80% fidelity) for at least 20% of evaluation sessions,
(c) have an operationally defined dependent variable, and
(d) provide sufficient details about the intervention for
replication of procedures. The strongest form of evidence was
“conclusive.” To provide conclusive evidence, studies had to
comply with all the attributes of the preponderant level plus
contain (a) design features that provided at least some control
for alternative explanations for intervention outcomes and
(b) a measure of treatment fidelity to assess the degree of
implementation of treatment-specific strategies by parents
and/or therapists throughout the program.
3. Results
3.1. Description of Studies. Six hundred sixty-nine (669)
articles were retrieved from the electronic searches. After
removing duplicates and elimination based on the title,
174 abstracts remained. Based on these 174 abstracts, we
eliminated 86 articles. The remaining 91 full-text articles
were further assessed for eligibility. At this point, 75 articles
were excluded because they described intervention models
rather than assessing their effects (� = 7), children had
developmental disabilities other than ASD (� = 4), children
were older than 36 months (� = 60), studies reported
exclusively qualitative data (� = 1), studies did not report
results specifically for the parent training intervention ( � =
1), or studies focused exclusively on a specific component
of parent training rather than the whole intervention (� =
2). Of the remaining 16 articles, Vismara et al.’s paper [34]
concerned the single participant included in a previous case
study [35]. Therefore, we excluded the single case study [35] to
avoid redundancy. The research team also contacted Gerald
Mahoney, who ascertained that most children in Mahoney
and Perales’ studies [36, 37] were different. Despite a little
overlap, these two studies were included in the review. A total
of 15 studies were analyzed for this review. Table 1 describes
the main features of each of these 15 articles.
3.1.1. Participants. A total of 484 children with a mean age
of 23.26 months were included in this review. Those children
were diagnosed with ASD (� = 248; [34, 36–40, 42–45]) or
identified as being at risk of ASD based on either the presence
of early markers (� = 156; [10, 41, 46]) or because they were
infant siblings of probands with ASD (� = 80; [47, 48]).
Two hundred seventy-seven (57%) parent-child dyads
received a parent training intervention, whereas the remain-
ing 207 children were controls. Gender was reported for
253 of the 277 toddlers involved [10, 36, 37, 39–45, 47]; 192
children were male (76%) and 61 were female (24%).
Primary caregiver gender was detailed in seven of the
15 studies reviewed [36, 37, 40–42, 45, 47]. Most primary
caregivers who participated in parent training programs in
these studies were female (� = 95; 99%), compared to
only one male primary caregiver (1%). Two papers reported
training of relatives other than mothers or fathers. Kasari
and colleagues [43] included a grandparent as the primary
caregiver for two children. Also, Vismara et al. [34] included
a grandmother as an observer during parent training sessions
rather than as an active participant, who was the child’s
mother in this case. The mean age of parents (or other
caregivers) receiving training ranged from 27.3 [41] to 36 years
[40].
3.1.2. Intervention Types. Parent training interventions for
children with a diagnosis of or suspected ASD may be clas-
sified based on their theoretical paradigms or their targeted
goals.
Based on their theoretical paradigms, interventions may
be positioned on a continuum from pure behavioral inter-
ventions to sociopragmatic interventions [49]. Interventions
based on a behavioral paradigm stem from Lovaas [7] and
colleagues’ work and are characterized by a high level of
structure in which a therapist prompts the child’s behavior.
When the child responds correctly, the therapist reinforces
the behavior. At the other end of the continuum, socioprag-
matic interventions are represented by the DIR Floortime
model [50]. Sociopragmatic interventions are characterized
by following the child’s lead through spontaneous play
activities and using those activities to enhance the child’s
learning. Eight of the 15 articles reviewed used interventions
mainly based on the sociopragmatic paradigm [36–39, 41,
44, 45, 47] and two articles reported more behaviorally
based interventions [40, 48]. The remaining five articles
incorporated strategies from both paradigms [10, 34, 42,
43, 46]. For example, the Early Start Denver Model parent
training program used by Vismara and colleagues [34] and
Rogers and colleagues [10] integrates behavioral techniques,
4 Autism Research and Treatment
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at
io
n
M
ah
on
ey
an
d
Pe
ra
le
s,
20
05
[3
7]
R
el
at
io
ns
hi
p-
fo
cu
se
d
pa
re
nt
tr
ai
ni
ng
(r
es
po
ns
iv
e
te
ac
hi
ng
)
C
lin
ic
or
ho
m
e
1h
/w
ee
k
ov
er
1y
ea
r
32
.6
ho
ur
s
C
og
ni
tio
n,
co
m
m
un
ic
at
io
n,
so
ci
oe
m
ot
io
na
l
fu
nc
tio
ni
ng
,a
nd
m
ot
iv
at
io
n
W
et
he
rb
y
an
d
W
oo
ds
,2
00
6
[3
9]
Pa
re
nt
-c
hi
ld
pl
ay
gr
ou
p
C
lin
ic
2x
/w
ee
k
fo
r1
2
m
on
th
s
N
ot
sp
ec
ifi
ed
In
di
vi
du
al
iz
ed
so
ci
al
co
m
m
un
ic
at
io
n
go
al
s
N
at
ur
al
is
tic
co
m
pr
eh
en
si
ve
pa
re
nt
tr
ai
ni
ng
H
om
e
1x
/w
ee
k
ov
er
9
w
ee
ks
N
ot
sp
ec
ifi
ed
R
oc
ha
et
al
.,
20
07
[4
0]
Jo
in
ta
tte
nt
io
n-
fo
cu
se
d
pa
re
nt
-i
m
pl
em
en
te
d
in
te
rv
en
tio
n
us
in
g
na
tu
ra
lb
eh
av
io
ra
na
ly
tic
st
ra
te
gi
es
C
lin
ic
3x
/w
ee
k
fo
r7
5
m
in
ut
es
ov
er
6
w
ee
ks
A
tl
ea
st
17
ho
ur
s
R
es
po
ns
e
of
jo
in
ta
tte
nt
io
n
Sc
he
rt
z
an
d
O
do
m
,2
00
7
[4
1]
Jo
in
ta
tte
nt
io
n-
fo
cu
se
d
pa
re
nt
tr
ai
ni
ng
H
om
e
1x
/w
ee
k
fo
r9
to
26
w
ee
ks
M
ea
n
=
14
ho
ur
s
Fo
cu
so
n
fa
ce
s,
tu
rn
-t
ak
in
g,
re
sp
on
di
ng
to
jo
in
ta
tte
nt
io
n,
an
d
in
iti
at
in
g
jo
in
ta
tte
nt
io
n
V
is
m
ar
a
et
al
.,
20
09
[3
4]
C
om
pr
eh
en
si
ve
pa
re
nt
tr
ai
ni
ng
in
co
rp
or
at
in
g
be
ha
vi
or
al
an
d
de
ve
lo
pm
en
ta
ls
tr
at
eg
ie
s
C
lin
ic
1h
/w
ee
k
ov
er
12
w
ee
ks
12
ho
ur
s
A
tte
nt
io
n
an
d
m
ot
iv
at
io
n,
se
ns
or
y
so
ci
al
ro
ut
in
es
,d
ya
di
c
en
ga
ge
m
en
t,
no
nv
er
ba
l
co
m
m
un
ic
at
io
n,
im
ita
tio
n,
jo
in
ta
tte
nt
io
n,
sp
ee
ch
,a
nd
be
ha
vi
or
G
ul
sr
ud
et
al
.,
20
10
[4
2]
Jo
in
ta
tte
nt
io
n-
fo
cu
se
d
ca
re
gi
ve
rt
ra
in
in
g
in
co
rp
or
at
in
g
be
ha
vi
or
al
an
d
de
ve
lo
pm
en
ta
ls
tr
at
eg
ie
s
C
lin
ic
3x
/w
ee
k
fo
r3
0
m
in
ut
es
ov
er
8
w
ee
ks
12
ho
ur
s
In
iti
at
io
n
an
d
re
sp
on
se
of
jo
in
ta
tte
nt
io
n
K
as
ar
ie
ta
l.,
20
10
[4
3]
Jo
in
ta
tte
nt
io
n-
fo
cu
se
d
ca
re
gi
ve
rt
ra
in
in
g
in
co
rp
or
at
in
g
be
ha
vi
or
al
an
d
de
ve
lo
pm
en
ta
ls
tr
at
eg
ie
s
C
lin
ic
3x
/w
ee
k
fo
r3
0
m
in
ut
es
ov
er
8
w
ee
ks
12
ho
ur
s
In
iti
at
io
n
an
d
re
sp
on
se
of
jo
in
ta
tte
nt
io
n
O
os
te
rl
in
g
et
al
.,
20
10
[4
4]
So
ci
al
-p
ra
gm
at
ic
jo
in
ta
tte
nt
io
n-
fo
cu
se
d
pa
re
nt
tr
ai
ni
ng
C
lin
ic
H
om
e
2
pl
en
ar
y
se
ss
io
ns
2
h/
w
ee
k
ov
er
4
w
ee
ks
+
3
h/
6
w
ee
ks
ov
er
11
m
on
th
s
N
ot
sp
ec
ifi
ed
32
ho
ur
s
D
ec
la
ra
tiv
e
ac
ts
co
m
bi
ne
d
w
ith
ey
e
co
nt
ac
t,
no
nv
er
ba
lr
eq
ue
st
s,
ob
je
ct
-f
un
ct
io
n
pl
ay
,
im
ita
tio
n
of
ac
tio
ns
,a
nd
tu
rn
-t
ak
in
g
W
on
g
an
d
Kw
an
,2
01
0
[4
5]
C
om
m
un
ic
at
io
n-
fo
cu
se
d
in
te
rv
en
tio
n
w
ith
th
e
ch
ild
C
lin
ic
5x
/w
ee
k
fo
r3
0
m
in
ut
es
fo
r
2
w
ee
ks
(1
0
se
ss
io
ns
)
5
ho
ur
s
Ey
e
co
nt
ac
t,
ge
st
ur
e,
an
d
vo
ca
liz
at
io
n/
w
or
ds
C
om
m
un
ic
at
io
n-
fo
cu
se
d
pa
re
nt
tr
ai
ni
ng
6 Autism Research and Treatment
(b
)
C
on
tin
ue
d.
St
ud
ie
s
In
te
rv
en
tio
n
ch
ar
ac
te
ri
st
ic
s
Ty
pe
Se
tti
ng
R
ec
om
m
en
de
d
fr
eq
ue
nc
y
an
d
du
ra
tio
n
H
ou
rs
of
in
te
rv
en
tio
n
C
hi
ld
re
n’s
ta
rg
et
ed
be
ha
vi
or
s/
ab
ili
tie
s
C
ar
te
re
ta
l.,
20
11
[4
6]
C
om
m
un
ic
at
io
n-
fo
cu
se
d
pa
re
nt
gr
ou
p
tr
ai
ni
ng
C
lin
ic
1x
/w
ee
k
ov
er
8
w
ee
ks
N
ot
sp
ec
ifi
ed
Tw
o-
w
ay
in
te
ra
ct
io
n,
m
at
ur
e
an
d
co
nv
en
tio
na
lw
ay
so
fc
om
m
un
ic
at
io
n
C
om
m
un
ic
at
io
n-
fo
cu
se
d
pa
re
nt
tr
ai
ni
ng
H
om
e
3x
N
ot
sp
ec
ifi
ed
C
om
m
un
ic
at
io
n
fo
rs
oc
ia
lp
ur
po
se
s,
un
de
rs
ta
nd
in
g
of
la
ng
ua
ge
R
og
er
se
ta
l.,
20
12
[1
0]
C
om
pr
eh
en
si
ve
pa
re
nt
tr
ai
ni
ng
in
co
rp
or
at
in
g
be
ha
vi
or
al
an
d
de
ve
lo
pm
en
ta
l
st
ra
te
gi
es
C
lin
ic
1x
/w
ee
k
fo
r1
ho
ur
ov
er
12
w
ee
ks
12
ho
ur
s
A
tte
nt
io
n
an
d
m
ot
iv
at
io
n,
se
ns
or
y
so
ci
al
ro
ut
in
es
,d
ya
di
c
en
ga
ge
m
en
t,
no
nv
er
ba
lc
om
m
un
ic
at
io
n,
im
ita
tio
n,
jo
in
ta
tte
nt
io
n,
sp
ee
ch
,a
nd
be
ha
vi
or
G
re
en
et
al
.,
20
13
[4
7]
D
ev
el
op
m
en
ta
lv
id
eo
-a
id
ed
au
tis
m
-s
pe
ci
fic
pa
re
nt
tr
ai
ni
ng
H
om
e
12
se
ss
io
ns
of
1.5
ho
ur
so
ve
r
5
m
on
th
s
18
ho
ur
s
So
ci
al
en
ga
ge
m
en
ta
nd
re
ci
pr
oc
ity
St
ei
ne
re
ta
l.,
20
13
[4
8]
B
eh
av
io
ra
lp
ar
en
tt
ra
in
in
g
C
lin
ic
8
se
ss
io
ns
of
1h
ou
ro
ve
r3
m
on
th
s
8
ho
ur
s
C
om
m
un
ic
at
io
n
H
om
e
2
se
ss
io
ns
of
1h
ou
ro
ve
r3
m
on
th
s
2
ho
ur
s
Autism Research and Treatment 7
such as repetition and the ABC structure of activities w ith
sociopragmatic strategies, including intervention through
activities chosen by the child in natural settings [51].
Interventions can also be classified as either ability-
focused or comprehensive. Focused interventions are indi -
vidual instructional strategies used to develop specific abil-
ities in children with ASD [52]. Ten papers used focused
interventions [38, 40–48]. Abilities targeted in these inter-
ventions included communication [45, 46, 48], joint attention
[38, 40–44], and parent-child relationship [47]. On the
other hand, comprehensive treatment models were studied
in five articles [10, 34, 36, 37, 39]. These interventions use
sets of practices with multiple components for a broader
developmental impact on core deficits in ASD [53]. They may
include development of communication, social interaction,
cognition, play, and autonomy. Notwithstanding the type of
intervention, development of communication was a main
goal of all 15 papers. In fact, difficulties with communication
are a core deficit in ASD and frequently the main concern of
parents.
Eight of the 15 articles used a comparison group, which
allows for a better estimate of the effect of the intervention on
children and parent outcomes. Interventions received by the
233 participants in comparison groups varied widely. Ninety-
six of these participants (41%) from three studies [39, 45, 47]
did not receive any treatment while, in the other five studies,
137 participants (59%) received treatment “as usual” [44, 46]
or a mixture of interventions [10, 38, 43].
3.1.3. Setting. All 15 articles reported individual parent ses -
sions, six of which took place in the family home [38, 39, 41,
44, 46, 47], at a clinic in six studies [10, 34, 40, 42, 43, 45],
and either at home or in a clinic in three studies [36, 37,
48]. Mahoney and Perales [36, 37] gave families the choice
of setting (clinic- or home-based) for the parent training
program. Steiner and colleagues [48] varied the setting of
the parent training: 8 sessions took place in a clinic and 3
at home. In this paper, clinic-based sessions were focused on
teaching new strategies while home-based sessions focused
on generalization of the newly acquired techniques at home.
Also, two studies used some parent group classes that took
place in a clinical setting [39, 46].
3.1.4. Intensity. Total time of interventions received varied
between five and 32 hours (mean = 18 hours). Most studies
involved parent training sessions for a total time between 10
and 20 hours [10, 34, 40–43, 47, 48] over a period of two to
six months [10, 34, 39, 41–43, 46–48]. Intervention programs
that offered more than 20 hours of intervention lasted at least
12 months [36–38, 44]. Only one paper assessed the effects
of a shorter, but intensive, parent training program. Wong
and Kwan [45] studied an intensive 2-week parent training
intervention during which parents attended ten 30-minute
sessions.
3.1.5. Teaching Strategies. Studies incorporated a range of
strategies to teach parents new skills. Some articles reported
the use of only one [42, 43, 47] or two [46] teaching strategies.
However, most studies used many different teaching strate-
gies to enhance parents’ learning; the mean number of strate-
gies described in the articles …
1
8
Increasing Generalization by
Training Teachers to Provide Parent
Training for Young Children
with Autism Spectrum Disorders
Brooke Ingersoll and Anna Dvortcsak
Children with autism spectrum disorders (ASDs) have pervasive
deficits in social
and communication skills, as well as restricted interests and
attention, which
interfere with learning and disrupt family life (American
Psychiatric Association,
2000). The educational needs of children with ASDs are
significant, with most chil-
dren requiring many hours of intensive intervention provided by
highly trained
staff. Interventions that are applied early and intensively have
been found to lead
to significant improvements in child outcome (Dawson &
Osterling, 1997;
National Research Council [NRC], 2001). In fact, after a
comprehensive review of
the scientific, theoretical, and policy literature surrounding the
education of
young children with ASDs, the NRC (2001 recommended that
“educational
services should include a minimum of 25 hours a week, 12
months a year, in
which the child is engaged in systematically planned,
developmentally appropri-
ate educational activity aimed toward identified objectives” (p.
220). The educa-
tional requirements make providing effective intervention for
children with ASDs
within a cost-effective, public program a challenge for school
districts throughout
the nation. With the growing number of children qualifying for
special education
services under the ASD eligibility, school districts are hard
pressed to provide the
level of intensity required to educate their toddler and
preschool-age students
with ASDs. Many publicly funded early intervention (EI) and
early childhood
special education (ECSE) programs have difficulty meeting the
recommended
number of hours (Hume, Bellini, & Pratt, 2005).
Even when provided with the recommended number of hours,
many children
with ASDs still struggle to generalize gains shown in treatment
to meaningful
life activities (Schreibman, 1988). This lack of generalization is
an issue for all
interventions; however, children with ASDs seem to have more
pronounced
generalization deficits than children with developmental delays
(Schreibman,
1988). Thus, it is necessary to develop intervention models for
young children with
ASDs that maximize opportunities for generalization and
maintenance of skills.
Whalen_Ch08.qxd 11/24/08 1:06 AM Page 1
2 Ingersoll and Dvortcsak
One effective strategy for promoting generalization is to
provide instruction
in the natural environment (Sandall, Hemmeter, Smith, &
McLean, 2005). The
natural environment has been defined as routines, materials, and
people familiar to
the child and family (Dunst, Hamby, Trivette, Raab, & Bruder,
2000). This
approach has been adopted by the Individuals with Disabilities
Education Act of
1990 (PL 101-476) for the education of young children with
special needs (Walsh,
Rous, & Lutzer, 2000); it requires that services provided by the
public sector use
more naturalistic approaches to intervention (Wetherby &
Woods, 2006). There is
still debate as to which settings constitute the natural
environment for young chil-
dren with ASDs in relation to service provision (e.g., center vs.
home, group vs.
one-to-one). However, interventions that each families how to
use intervention
strategies are an excellent option since the family is the most
“natural environ-
ment” for young children. A further benefit of teaching parents
is that it can lead
to increased hours of intervention, making it more likely that
families can achieve
the recommended intensity of intervention for their children
with ASDs.
BENEFITS OF PARENT TRAINING
A significant body of research demonstrates the benefit of
teaching parents of chil-
dren with disabilities to implement the intervention themselves
(Shearer &
Shearer, 1977). Although less research exists for children with
ASDs, parent train-
ing has also been shown to be effective for this population (see
McConachie &
Diggle, 2007, for a review). A variety of intervention methods
have been taught to
parents of young children with ASDs, including discrete trial
training (e.g., Smith,
Groen, & Wynn, 2000) and structured teaching (Ozonoff &
Cathcart, 1998). Most
parent-implemented approaches are naturalistic, meaning that
instruction occurs
around the child’s focus of interest and during meaningful
routines and activities.
For this reason, only naturalistic parent training approaches are
reviewed herein.
Several reasons exist for using a naturalistic approach with
parents of young
children with ASDs. First, naturalistic intervention strategies
have been shown to
be effective for teaching a variety of social-communicative
skills, including
language (see Kaiser, Yoder, & Keetz, 1992, for review),
gestures (Ingersoll, Lewis,
& Kroman, 2007; Warren, Yoder, Gazdag, & Kim, 1993), play
skills (Stahmer, 1995;
Thorp, Stahmer, & Schreibman, 1995), peer interaction (Pierce
& Schreibman,
1995), and joint attention skills (Pierce & Schreibman, 1995;
Whalen & Schreibman,
2003) in children with ASDs and developmental delays. Second,
research indicates
that naturalistic strategies lead to better generalization and
maintenance
(Charlop-Christy & Carpenter, 2000; Delprato, 2001; McGee,
Krantz, &
McClannahan, 1985; Miranda-Linne & Melin, 1992), as well as
more spontaneous
use of skills (Schwartz, Anderson, & Halle, 1989) than more
structured teaching
approaches. Finally, these approaches are more similar to
natural adult–child
interactions (Schreibman, Kaneko, & Koegel, 1991); this fact
makes them more
acceptable to parents and easier to implement in the course of
daily routines.
Indeed, research has shown that parents who were taught to use
Pivotal Response
Training (PRT), a naturalistic intervention, used more positive
affect while teach-
ing their children (Schreibman et al., 1991), and both the
parents and children
exhibited more happiness and interest and less stress during
family interactions
than families in which the parents were trained to implement
highly structured
behavioral techniques (Koegel, Bimbela, & Schreibman, 1996).
Whalen_Ch08.qxd 11/24/08 1:06 AM Page 2
Training Teachers to Provide Parent Training 3
NATURALISTIC PARENT TRAINING APPROACHES
Two general naturalistic intervention approaches have been
used with parents:
one approach based on the developmental, social-pragmatic
(DSP) literature and
one based on the naturalistic behavioral literature.
Developmental, Social-Pragmatic Approaches
DSP interventions are derived from research on typical parent–
child interactions,
which suggests a relationship between a parent’s responsiveness
to a child’s
behavior and the child’s level of social-communicative
development (Bornstein,
Tamis-LeMonda, & Haynes, 1999; Hoff-Ginsburg & Shatz,
1982; Mahoney &
Perales, 2003; Prizant, Wetherby, & Rydell, 2000). Thus, the
goal of developmen-
tally based, parent-implemented interventions is to teach
parents strategies to
increase their responsiveness to the child’s behavior. These
interventions share
several common characteristics (Prizant et al., 2000):
1. Teaching follows the child’s lead or interest.
2. The adult arranges the environment to encourage initiations
from the child.
3. All communicative attempts including unconventional (e.g.,
jargon, echolalia,
hand leading, nonverbal protests) and preintentional
communication (e.g.,
reaching and grabbing, eye gaze, crying, facial expressions,
body postures) are
responded to as if they are purposeful.
4. Emotional expressions and affect sharing are emphasized by
the adult.
5. The adult uses simplified language around the child’s
attentional focus.
Several studies have examined the effectiveness of teaching
parents to use
DSP interventions with their children with ASDs. For example,
Mahoney and
Perales (2003) examined the efficacy of responsive teaching for
promoting social-
emotional functioning in young children with ASDs using a
single-group,
pre-/posttest design. In their study, 20 young children with
ASDs and their moth-
ers participated in an 8- to 14-month intervention in which the
mothers were
taught a variety of strategies that increased their responsiveness
to their children’s
behavior. At pre- and posttreatment (approximately 1 year
later), the children and
their mothers were videotaped while playing with a set of
developmentally
appropriate toys, and mothers were asked to complete the Infant
Toddler Social
Emotional Assessment (Carter & Briggs-Gowan, 2000) and the
Temperament and
Atypical Behavior Scale (Bagnato, Neisworth, Salvia, & Hunt,
1999). Mothers
exhibited significant improvements in their responsiveness, and
the children
exhibited significantly higher ratings on social interactive
behavior during the
videotaped interactions from pre- to posttreatment. The children
were also rated
as showing significant improvements in social-emotional
functioning on the two
standardized rating scales at posttreatment. This study did not
include a control
group of children whose mothers did not receive training, so it
is difficult to con-
clude that the positive gains seen in the children were due to
responsive teaching.
However, there was a positive correlation between changes in
the mothers’ level
of responsiveness and changes in the children’s social
interactive behavior on the
videotaped observations. In addition, changes in maternal level
of responsiveness
Whalen_Ch08.qxd 11/24/08 1:06 AM Page 3
4 Ingersoll and Dvortcsak
were predictive of a child’s improvements on the standardized
assessments of
social-emotional functioning. These findings are consistent with
the authors’
hypothesis that maternal responsiveness promotes
developmental gains in chil-
dren with ASDs and other developmental disorders.
Wetherby and Woods (2006) used a quasi-experimental design
to examine
the effectiveness of the early social interaction project, a
developmentally based,
parent-implemented intervention designed for very young
children with ASDs.
Seventeen at-risk children younger than 2 years and their
families were selected
to participate. Children were identified as at risk for ASDs
based on the presence
of a significant number of indicators from the Communication
and Symbolic
Behavior Scales Developmental Profile behavior sample
(Wetherby & Prizant,
2002). Parents received individualized coaching twice per week
in the home for a
minimum of 12 months. These coaching sessions were focused
on teaching the
parents to use a variety of developmentally based intervention
strategies during
daily routines with their child. Participating children were
assessed at pre- and
posttreatment on the Communication and Social Behavior
Scales (Wetherby &
Prizant, 2003). An independent comparison group of 18 children
who were
referred for concerns of ASDs were also examined at age 3
years to determine
developmental trajectories of children with ASDs who did not
receive the
parental intervention. The results suggested that the children
whose parents were
trained in early social interaction made statistically significant
gains in a variety
of social-communicative skills from pre- to posttreatment. In
addition, the early
social interaction participants scored significantly better than
the comparison
group at age 3 years on measures of social signals, rate of
communicating, com-
municative functions, and understanding.
These findings suggest that the children whose parents received
training
made improvements over the course of a year on their social -
communicative
development and outperfor med a group of children who did not
receive treat-
ment at age 3 years. Although this study offers some
preliminary evidence for the
effectiveness of a developmental, parent-implemented approach
because the
participants were not randomly assigned, it is possible that the
groups were not
similar at intake.
Interestingly, the early social interaction participants’
pretreatment profiles
resembled the comparison group’s profiles, although the
comparison group was
an average of 1 year older. This finding could be interpreted to
indicate that the
treatment group would have continued to look similar to the
control group at age
3 years had they not received treatment. However, additional
research using a ran-
domized or single-subject design is needed to conclude that the
children’s changes
were due to the intervention.
In a randomized trial, Aldred, Green, and Adams (2004)
examined the
efficacy of a developmentally based, parent-implemented
intervention on social-
communicative development in young children with autism.
Twenty-eight
children with autism and their parents were randomly assigned
to a treatment or
a control group. Parents of the children in the treatment group
participated in
workshops, followed by individual coaching sessions that
focused on teaching the
parents to use a number of developmentally based intervention
strategies with
their child. After 1 year, the parents of the children in the
treatment group showed
improvements in their responsiveness towards their children on
an observational
Whalen_Ch08.qxd 11/24/08 1:06 AM Page 4
Training Teachers to Provide Parent Training 5
measure of parent–child interaction compared with parents in
the control group.
In addition, the children in the treatment group showed more
improvement
(reduced symptomology) on the Reciprocal Social Interaction
subdomain of the
Autism Diagnostic Observation Schedule (Lord et al., 2000),
greater gains in
expressive language as measured by the MacArthur
Communicative
Development Inventory (Fenson et al., 1993), and a greater
increase in number of
communication acts on an observational measure of parent–
child interaction than
the children in the control group.
These studies offer preliminary evidence for the effectiveness
of developmen-
tally based, parent-implemented approaches for promoting
social-communicative
development in young children with ASDs. The studies found
general improve-
ments in social engagement (Mahoney & Perales, 2003) and
general communica-
tive behavior (Aldred et al., 2004; Wetherby & Woods, 2006).
However, they did
not examine whether the children also experienced increases in
specific language
behaviors, such as vocabulary or mean length of utterance.
Thus, the effect of this
approach on the development of more specific language skills is
unknown. In
addition, in each of these studies, parent training was conducted
individually
over an extended period of time. Therefore, it is unclear
whether children with
ASDs and their parents would benefit from a shorter or less
intense parent train-
ing format. This issue is particularly important because many
publicly funded
programs may not be able to offer such extensive parent
education services.
Naturalistic Behavioral Approaches
Naturalistic behavioral approaches focus on teaching parents to
use prompting,
shaping, and reinforcement strategies to increase specific
social-communicative
skills in their child with ASD. In keeping with the naturalistic
emphasis, parents
are taught to use these teaching strategies around their child’s
focus of interest
and within daily routines and activities (Kaiser et al., 1992).
Parent-implemented
interventions using a naturalistic behavioral approach share the
following charac-
teristics (Delprato, 2001; Kaiser et al., 1992):
1. The learning environment is loosely structured .
2. Teaching occurs within ongoing interactions between the
child and the adult.
3. The child initiates the teaching episode by indicating interest
in an item or
activity.
4. Teaching materials are selected by the child and varied often.
5. The child’s production of the target behavior is explicitly
prompted.
6. A direct relationship exists between the child’s response and
the reinforcer.
7. The child is reinforced for attempts to respond.
A large body of work has examined the effectiveness of
naturalistic behav-
ioral interventions for teaching language skills to children with
ASDs and other
developmental disorders (see Kaiser et al., 1992, for review).
Among this litera-
ture, several studies have trained parents to be the intervention
providers. For
example, Laski, Charlop, and Schreibman (1988) used a
multiple-baseline design
Whalen_Ch08.qxd 11/24/08 1:06 AM Page 5
6 Ingersoll and Dvortcsak
to examine the effect of teaching eight parents to use the natural
language paradigm,
now referred to as PRT, with their children with ASDs. The
results suggested that
parents increased the frequency with which they required their
children to speak.
In addition, all children increased their frequency of speech
with their parents.
These increases generalized to three nontraining settings,
suggesting that once the
parents learned the intervention techniques, they were able to
elicit their child’s
language in a variety of environments.
In addition, research has shown that parents can also learn
naturalistic behav-
ioral intervention strategies for increasing other social -
communicative skills,
including imitation, joint attention, and play. For example,
Ingersoll and Gergans
(2007) taught three parents naturalistic intervention strategies
to increase their
children’s object and gesture imitation during play. All parents
improved their
abilities to use the intervention techniques, and their children
showed concomi-
tant improvements in their imitation skills. Rocha, Schreibman,
and Stahmer
(2007) taught three parents to teach their children with autism
to respond to joint
attention bids. Children improved their abilities to respond as
well as to initiate
joint attention, despite the fact that the intervention did not
directly target joint
attention initiations. Gillett and LeBlanc (2007) taught three
parents to use the
natural language paradigm with their children with autism; they
found that, in
addition to improvements in spontaneous and prompted
language, two of the
children also showed improvements in their use of appropriate
play.
These studies have mainly used single-subject designs with a
small number
of participants, which limits the generalizability of the results
to a wide range of
children with ASDs and their parents. However, the use of an
experimental design
allows for the determination that changes in the parents’
behavior directly affect
their children’s behavior.
Combined Approaches
One additional naturalistic intervention approach has been to
combine interven-
tion strategies from both the DSP and naturalistic behavioral
models with the
hope of developing even more powerful interventions. For
example, Kaiser,
Hancock, and Niefeld (2000) used a multiple-baseline design to
examine the effi-
cacy of parent-implemented enhanced milieu teaching with six
mother–child
dyads. This intervention included both naturalistic behavioral
strategies designed
to teach specific language targets and DSP strategies to increase
parent respon-
siveness. Parents learned a variety of naturalistic behavioral
strategies to use with
their children with ASDs via 24 weekly coaching sessions.
Although coaching was
conducted in a clinic, all parents generalized their use of the
strategies to the home
and maintained their use of the strategies (although at a lower
rate than posttreat-
ment) at a 6-month follow-up.
All children in this study showed an increase in their use of
language targets
(e.g., two-word requests, action verbs, attribute object
combinations), and most
children also increased the complexity and diversity of their
language. Not sur-
prisingly, those children who exhibited less significant
communication delays
made the most gains in productive language. This study
indicates that a parent-
implemented naturalistic behavioral approach combined with
responsiveness
strategies can be effective for increasing specific social -
communicative skills.
However, additional research is needed to determine whether
the combined
approach is more effective than either component implemented
in isolation.
Whalen_Ch08.qxd 11/24/08 1:06 AM Page 6
Training Teachers to Provide Parent Training 7
ADDITIONAL BENEFITS OF PARENT TRAINING
Parent training appears to confer a number of other benefits
when compared with
therapist-implemented interventions. For example, one early
study compared the
effects of teaching parents to implement behavior therapy with
their child to
clinician-implemented intervention (Koegel, Schreibman,
Britten, Burke, &
O’Neill, 1982). Parents in the parent training group received 5
hours per week of
training with their child until mastery for a total of
approximately 25–50 hours;
the clinic treatment group received 4 1/2 hours of treatment per
week for 1 year for
a total of approximately 225 hours. The results indicated that
children in both
groups made similar gains when observed with the treatment
provider, but chil-
dren in the parent training group were more likely to respond
appropriately
to parent questions and directions in the home. This finding
indicates that
parent-implemented intervention leads to better generalization
than therapist-
implemented intervention and requires significantly fewer hours
of therapist
time. In addition, parents in the parent training group exhibited
a significant
increase in the amount of recreational/leisure activities they
participated in,
whereas parents in the clinic treatment group showed no change.
Parent-implemented interventions for young children with ASDs
are compat-
ible with recommendations from the NRC and the Individuals
with Disabilities
Education Act regarding teaching within the natural
environment. More impor-
tantly, the research suggests that parent training is an effective
intervention
approach and leads to better generalization than traditional
therapist-delivered
services. In addition, it has been shown to improve other
aspects related to family
functioning and allows for an increase in the number of hours of
intervention a
child receives per week, without an increase in the number of
hours of direct inter-
vention provided by professionals.
Given these findings, the NRC’s Committee on Educational
Interventions for
Children with Autism concluded,
As part of local educational programs and intervention programs
for children from
birth to age 3, families of children with autistic spectrum
disorders should be pro-
vided the opportunity to learn techniques for teaching their
child new skills and
reducing problem behaviors. (NRC, 2001, p. 216)
OBSTACLES TO IMPLEMENTATION
Although parent training is now considered an essential
component of successful
early intervention programs for children with autism (NRC,
2001), formal parent
training programs are still the exception rather than the rule in
community-based
ECSE settings for children with ASDs age 3–5 years (Hume et
al., 2005). There are
several obstacles that can prevent the inclusion of parent
training programs in
ECSE classrooms. The first obstacle involves the structure of
most empirically
based parent training programs, which are typically conducted
individually with
the parent, child, and parent educator once to twice per week
over many months
(Aldred et al., 2004; Kaiser et al., 2000; Mahoney & Perales,
2003; Wetherby &
Woods, 2006). While this structure may be appropriate for
private services or EI
services delivered in the home, most publicly funded ECSE
programs for children
with ASDs older than 3 years are provided in a classroom
setting that allows very
Whalen_Ch08.qxd 11/24/08 1:06 AM Page 7
8 Ingersoll and Dvortcsak
little time for teachers to meet individually with a parent and
child. This differ-
ence makes it difficult for most special educators serving
children with ASDs in a
classroom setting to envision using these models within their
programs. To
increase the likelihood that ECSE staff will include parent
training in their cur-
riculum, it is important to develop a parent training format that
works within a
classroom setting.
A second obstacle to the inclusion of parent training in
community-based
programs is the lack of quality parent training materials
developed for families of
children with ASDs. Many of the empirically based programs
mentioned in the
literature have developed materials for parent training;
however, because they are
typically conducted in a one-to-one setting, they lack many of
the features neces-
sary for providing training to a group of parents, such as slide
presentations and
video examples. Most ECSE teachers are unlikely to adapt
materials designed for
use in a one-to-one training program to a group program
because of the amount
of time necessary to develop group presentation materials.
A final obstacle to the provision of parent training is the lack of
appropriate
preparation for providers working with children with ASDs and
their families.
Most specialists—especially those who work with children ages
3 years and
older—have been trained to work with children, not adults. In
addition, they
often are not trained to understand how adults learn or
techniques for teaching
parents specific skills (Mahoney et al., 1999). The lack of
specific preparation acti-
vities for early childhood special educators in parent training is
evident in the lack
of courses available in this area in preparation programs in
special education. To
illustrate this point, McCollum (1999) reported her own cursory
inspection of a
variety of EI/ECSE textbooks revealed that, although the topic
of families
received a significant amount of attention, the topic of parent
education was con-
spicuously absent. Thus, it is necessary to develop an effective
teacher preparation
protocol to encourage ECSE staff to provide parent-
implemented intervention.
To address these issues, Ingersoll and Dvortcsak (2006, in
press) developed
Project ImPACT (Improving Parents As Communication
Teachers), a parent train-
ing program designed specifically for use with children with
ASDs and their
families in ECSE classroom settings. The goal was to develop
an evidence-based
parent training curriculum using a format compatible with a
classroom-based
intervention model, including user-friendly materials, and
incorporating an effec-
tive teacher preparation protocol.
PARENT TRAINING CURRICULUM
The parent training curriculum focuses on teaching families
naturalistic interven-
tion techniques to increase their child’s social-communicative
skills during daily
activities and routines (Ingersoll & Dvortcsak, 2006). The
specific intervention
strategies have been drawn from a variety of evidence-based
interventions shown
to be effective for young children with ASDs and other
developmental disorders.
Parents are first taught strategies for setting up their home to
ensure
successful parent–child interactions. Subsequently, they are
taught the interven-
tion strategies (see Appendix 8.1). Project ImPACT is composed
of developmental
strategies to encourage parent responsiveness (e.g., Mahoney &
Perales, 2003)
and naturalistic behavioral strategies to teach specific social -
communicative
skills (e.g., Kaiser et al., 1992). Table 8.1 provides a
description of the individual
Whalen_Ch08.qxd 11/24/08 1:06 AM Page 8
Training Teachers to Provide Parent Training 9
Table 8.1. Intervention strategies
Topic 1: Set up your home for success
Parents are taught strategies for arranging their home to
increase the likelihood of positive parent-
child interactions, including having a well-defined play space,
limiting distractions, rotating toys,
and scheduling predictable play routines (Davis & Fox, 1999).
Topic 2: Follow your child's lead
In order to increase their child's motivation, parents are taught
to follow their child's focus of
attention and to provide teaching opportunities around the
activities their child chooses.
Parents are taught to provide a variety of highly motivating
materials (e.g., toys, games,
snacks), respond to their child's changing interests, and assist
their child in his or her play. This
technique is used in all naturalistic interventions and has been
shown to increase parent
responsiveness and child motivation (e.g., Kaiser et al., 1992).
Topic 3: Imitate your child
Parents are taught to imitate their child's vocalizati ons, actions
with objects, and gestures. This
strategy has been show to increase child responsiveness and
coordinated joint attention and is
used to increase social engagement (Klinger & Dawson, 1992)
Topic 4: Animation
Parents are taught to exaggerate their gestures, facial
expressions, and vocal qualities in order to
increase their child's interest and to model appropriate
nonverbal communication (Mahoney &
MacDonald, 2007).
Topic 5: Modeling and expanding language
Parents are taught to use a variety of indirect language
stimulation techniques (e.g., descriptive
talk, conversational recast) to talk about their child's focus of
interest. These techniques have
been shown to be effective at increasing the rate and complexity
of children's language skills
(e.g., Camarata, Nelson, & Camarata, 1994; Ingersoll,
Dvortcsak, Whalen, & Sikora, 2005; Kaiser
et al., 1996).
Topic 6: Playful obstruction
Parents are taught to gain their child's attention during an
interaction by playfully interrupting their
child's activity. This technique is used to increase initiations
from the child (Greenspan, Wieder, &
Simons, 1998).
Topic 7: Balanced turns
Parents are taught to use balanced turns with their child to
increase their reciprocity and to provide
opportunities for …
· FEATURE ARTICLE
Continuing Education
Shaping Effective Communication Skills
and Therapeutic Relationships at Work
The Foundation of Collaboration
by Susan M. Grover, PhD, MS, RN
l1
e study of communication is a vital part of under-
standing human behavior. Indeed, the concept of
communication is an integral part of every profession,
academic field, and of society as a whole. It is the basis upon
which relationships are established. Despite the emphasis on
effective communication, poor communication is often the
cause of great misunderstanding and conflict.
Occupational health nurses traditionally have been a
part of collaborative interdisciplinary teams including the
employer and employees (Wachs, 2005). This emphasis on
interdisciplinary practice mandates an appreciation for and
understanding of the importance of effective communica-
tion. The focus of this article is on effective communication
among occupational health professionals, employees, and
employers. Therefore, the purpose of this article is to explore
the key components necessary for effective communication
and therapeutic relationships within the work environment.
COMMUNICATION COMPONENTS
What is communication and what are the major com-
ponents? Historically, hundreds of definitions and a variety
of paradigms have been developed. What has come to be
accepted as a basic assumption by communication experts
is that communication is a process with no beginning or
end (Heath, 1992). As such, it is continually occurring and
constantly changing because no two interactions are ever
the same. Communication builds on previous interactions
and prompts ongoing communication. Indeed, a commonly
accepted maxim is that "people cannot not communicate
nor can they uncommunicate" (Heath, 1992, p. 32).
ABOUT THE AUTHOR
Dr. Grover is Professor and Chair, Family Community Nursing,
East Ten-
nessee State University, Johnson City, TN.
APRIL 2005, VOL. 53, NO.4
Early communication models viewed communication
as a linear process. McQuail and Windahl (1981) discuss
these models as a message going through a transmitter to
a receiver. This model essentially explored who said what
in which channel to whom and with what effect. Subse-
quent models described communication as messages that
are encoded and decoded to send a signal (McQuail &
Windahl, 1981). The emphasis in these models was on the
shared experience between encoder and decoder, as well
as the importance of feedback. These concepts currently
have become key ingredients in the development of inter-
disciplinary interactions and communication.
Human communication can best be described as a
"two-way ongoing process by which a person or persons
stimulates meaning in the mind of another person (or per-
sons) through verbal and/or nonverbal messages" (Stone,
Singletary, & Richmond, 1999, p. 53). This definition im-
plies that there must be an exchange of ideas and an abil -
ity to stimulate meaning for the recipient of the message.
The sender must transmit the message effectively for the
receiver to interpret or decode the message. Through in-
terpersonal communication, individuals become aware
of, and sensitive to, one another. If the receiver is un-
able to receive, misinterprets, or does not respond to the
message, communication is flawed (Stone et al., 1999).
Indeed, many communication errors occur because the
message is not heard accurately. With the number of in-
terdisciplinary health care professionals who work on the
occupational health team, a lack of common ground is
often the direct result of differing patterns of communi-
cation. Clear communication strategies that are mutually
understandable are critical for optimal outcomes (Mil -
ligan, Gilroy, Katz, Rodan, & Subramanian, 1999).
177
BASIC COMMUNICATION SKillS
Numerous books and articles have been written about
how to avoid flawed communication through the use of
basic communication skills (Ellis, 1999; Ledds-Herwitz,
1992). These basic communication skills include:
• Listening.
• Asking open-ended questions.
• Asking closed questions.
• Clarifying.
• Paraphrasing.
• Using facilitators.
• Assessing non-verbals.
• Silence.
Listening
Part of being responsive to an individual in an inter-
action is to listen. Listening requires attending to the other
person. Attending skills include maintaining eye contact
and attempting to decode or interpret the message. Too
often, individuals are thinking of the next question to ask
instead of focusing on the present interaction.
Asking Open-Ended Questions
Open-ended questions are key to an effective interview .
These are questions that cannot be answered with "yes,"
"no," or a short phrase. Typically, open-ended questions are
worded to gain a wide range of possible responses and infor -
mation. In addition, these types of questions help employees
feel that the occupational health nurse is listening. Examples
of open-ended questions are "How did you feel about that?"
and "What helped you deal with that in the past?" It is often
difficult not to follow up an excellent open-ended question
with a closed one, especially if there is a lapse of time be-
fore a response. This can be related to provider concerns that
Parents perceptions of autism and theirhealth-seeking behav
Parents perceptions of autism and theirhealth-seeking behav
Parents perceptions of autism and theirhealth-seeking behav
Parents perceptions of autism and theirhealth-seeking behav
Parents perceptions of autism and theirhealth-seeking behav
Parents perceptions of autism and theirhealth-seeking behav
Parents perceptions of autism and theirhealth-seeking behav
Parents perceptions of autism and theirhealth-seeking behav
Parents perceptions of autism and theirhealth-seeking behav
Parents perceptions of autism and theirhealth-seeking behav
Parents perceptions of autism and theirhealth-seeking behav
Parents perceptions of autism and theirhealth-seeking behav
Parents perceptions of autism and theirhealth-seeking behav
Parents perceptions of autism and theirhealth-seeking behav
Parents perceptions of autism and theirhealth-seeking behav
Parents perceptions of autism and theirhealth-seeking behav
Parents perceptions of autism and theirhealth-seeking behav

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Parents perceptions of autism and theirhealth-seeking behav

  • 1. Parents' perceptions of autism and their health-seeking behaviors Maria Isabel O. Quilendrino a,*, Mary Anne R. Castor a, Nenacia Ranali Nirena P. Mendoza b, Jacqueline R. Vea c, Nina T. Castillo-Carandang c a Department of Clinical Epidemiology and Department of Pediatrics, College of Medicine, University of the Philippines, Manila, Philippines b Department of Clinical Epidemiology and Department of Family and Community Medicine, College of Medicine, University of the Philippines, Manila, Philippines c Department of Clinical Epidemiology, College of Medicine, University of the Philippines, Manila, Philippines c l i n i c a l e p i d e m i o l o g y a n d g l o b a l h e a l t h 3 ( 2 0 1 5 ) s 1 0 – s 1 5 a r t i c l e i n f o Article history: Received 15 September 2015 Accepted 13 November 2015 Available online 7 December 2015 Keywords: Autism
  • 2. Autistic disorder Behavior Perception a b s t r a c t Background: Parents' health-seeking behaviors, which in turn may be related to their per- ceptions, are hypothesized to be the major determinant of the timing of diagnosis and subsequent intervention for children with autism. Objective: The primary objective of this study was to describe parental perceptions of autism and health-seeking behaviors for urban Filipino children aged 2–6 years. Methods: This was a cross-sectional study conducted in several phases. The first phase involved collection of qualitative data from key informant interviews and small group discussions. The second phase involved the development of a validated and reliable ques- tionnaire, which was administered to 41 parents of children with autism, aged 2–6 years. Results: Parents had varying perceptions of autism. They were
  • 3. generally undecided with regard to the etiology of autism, but were in agreement that psychosocial factors, such as parental sins and curses, were unlikely to be associated with autism. The most common presenting symptom noted by parents was a qualitative impairment in social interaction. There was a noted trend towards earlier age of symptom recognition (mean of 24 months) and diagnosis of autism (mean of 39 months) among parents with younger children. Conclusion: The results of this study showed some trends: There is improved awareness regarding autism and the needs of children with autism. Parents tend to disagree with previous myths about autism. There was an observable trend toward earlier diagnosis for this group. # 2015 INDIACLEN. Published by Elsevier, a division of Reed Elsevier India, Pvt. Ltd. All rights reserved. * Corresponding author. Tel.: +63 9178033888; fax: +63 27311631. E-mail address: [email protected] (M.I.O. Quilendrino).
  • 4. Available online at www.sciencedirect.com ScienceDirect journal homepage: www.elsevier.com/locate/cegh http://dx.doi.org/10.1016/j.cegh.2015.11.003 2213-3984/# 2015 INDIACLEN. Published by Elsevier, a division of Reed Elsevier India, Pvt. Ltd. All rights reserved. http://crossmark.crossref.org/dialog/?doi=10.1016/j.cegh.2015.1 1.003&domain=pdf http://crossmark.crossref.org/dialog/?doi=10.1016/j.cegh.2015.1 1.003&domain=pdf http://dx.doi.org/10.1016/j.cegh.2015.11.003 mailto:[email protected] http://www.sciencedirect.com/science/journal/22133984 www.elsevier.com/locate/cegh http://dx.doi.org/10.1016/j.cegh.2015.11.003 c l i n i c a l e p i d e m i o l o g y a n d g l o b a l h e a l t h 3 ( 2 0 1 5 ) s 1 0 – s 1 5 S11 1. Introduction It can be said that autism is no longer a rare disorder, yet at present, it is still incompletely understood. A 5-year review of developmental referrals to a tertiary government hospital in Manila showed that autism ranked second, next to global developmental delay and mental retardation, as the top diagnoses for referrals.1 The increasing prevalence of autism may be reflective of either a true increase in the number of cases or any of the following: increased societal awareness, changing diagnostic criteria, and better access to educational services.2 Presenting
  • 5. problems of the disorder vary greatly depending on the developmental level and chronological age of the individual.3 Although early identification is encouraged by healthcare professionals, a significant lag between age at first parental concern and age at first ASD diagnosis is consistently reported in the literature.4 While much about autism is unclear, the importance of early intervention for such children is almost universally acknowledged. Early detection and intervention are critical in altering the disabling trajectory of autism.1 Parents are usually the first to recognize signs of autism. Parents' perceptions and beliefs may drive their health behaviors – whether to seek formal evaluation or choose to wait. Recognition of a problem is the first step of the process.5 Researches show that early signs of autism were reported as early as 1 year of age6 and that autism can be reliably diagnosed by 2 years of age, and yet the mean age of diagnosis for autism is generally delayed. A study done in the Neurodevelopmental Section of the Philippine Children's Medical Center showed that the mean age of recognition is 1.8 years and the interval between the onset of symptoms and referral is 2.6 years.7 The most common manifesting symptom and reason for referral was language delay. Parents' health-seeking behavior is an essential driving force in determining the length of this period. Understanding the effect of parental perceptions on their health-seeking behavior would aid in developing targeted interventions aimed at addressing these perceptions in order to modify behavior geared towards shortening the period from symptom recognition to formal diagnosis. A local study on factors implicated in the delayed consultation of children with neurodevelopmental disabilities
  • 6. cited parental factors as a main reason for delays in consultation. These parental factors were related to parents' beliefs or hope that their children will eventually catch up, general lack of knowledge regarding normal child develop- ment, and lack of funds.8 An analysis of a large sample of US children born in 1994 found that being male, having a low IQ, and experiencing developmental regression were all associated with earlier diagnosis for children.9 Children with more educated parents were diagnosed earlier. Having a mother born outside the USA and being first born were also associated with later diagnoses. Children with higher communication function were diagnosed much later than those with lower function.8 A local study in an urban low income community in Manila showed that parents' educational level affected the rate of reporting of develop- mental concerns, and that parents were more tolerant of delays in language development when the child was either a male or less than 2 years of age.10 Parents cited a range of explanations to account for their son's or daughter's disability, including birth trauma and illness during pregnancy. Some parents also expressed beliefs that do not conform to biomedical explanations, but drew on magical or religious beliefs. A sense of guilt was featured in many parents' descriptions. Some parents believed that autism was a punishment for past mistakes, whereas parents who ascribed to a biomedical explanation of autism perceived a responsibility for passing on faulty genes to their child with autism. Gray concluded that these explanatory models enabled parents to make sense of autism and facilitated their ability to cope.11 Parental views regarding the causes of autism are shown to affect their health practices for their children. The view that vaccines (thimerosal; measles, mumps rubella [MMR] vaccines) were behind the autism issue led to mistrust of physicians, a decrease in vaccination rates, and an increase
  • 7. in antivaccine movements in many countries, leading to outbreaks of vaccine-preventable diseases.12 Parental perceptions of autism are embedded in various biomedical, social, psychological, economic, and cultural constructs. Understanding parental explanatory models can help demystify autism, and foster a mutually trusting, collaborative approach for the child's total care. 2. Objectives The general objective of the study was to determine the association between parental perceptions of autism and their health-seeking behaviors. Specific objectives were to explore parents' understanding of autism, identify parental or child factors associated with perceptions on autism, illustrate the timeline from symptom recognition, age of initial consult, up to formal diagnosis, and determine the most common presenting symptoms that parents recognize in children diagnosed with autism. 3. Methods 3.1. Study design This was a cross-sectional study conducted in two phases. The first phase involved development of a valid and reliable questionnaire. The second phase was a survey on parents' perceptions on autism and their health-seeking behaviors. 3.2. Study population and setting A convenience sample of parents were recruited through institutions within Metro Manila – parent organizations, schools, clinics, and therapy centers – involved inthe care of children
  • 8. with autism, during the period from June to August 2013. 3.2.1. Inclusion criteria Participants of this study were parents living with their child/ children aged 2–6 years old who has/have been previously diagnosed with autism by a child development specialist. Table 1 – Demographic characteristics of parent respon- dents in the focus group discussions and survey. Focus group discussions (n = 15) Survey (n = 41) Age in years (mean � sd) 39 � 7 36 � 6 % female 9/15 (60%) 34/41 (83%) % married 13/15 (87%) 30/41 (73%) % employed 7/15 (47%) 23/41 (56%) Number of children with autism: 1 8 41 2 1 0 Table 2 – Profile of children with autism of parent respondents in the focus group discussions and survey. Focus group discussions (n = 10)
  • 9. Survey (n = 41) Age in months (mean � sd) 75.43 � 33.74 60.73 � 17.45 % male 7/10 (70%) 36/41 (87.8%) Birth rank 5/10 (50%) firstborn 21/41 (53%) firstborn Fetal maturity 8/10 (80%) term 39/41 (96%) term Mode of delivery 7/10 (70%) normal delivery 25/41 (60%) normal delivery c l i n i c a l e p i d e m i o l o g y a n d g l o b a l h e a l t h 3 ( 2 0 1 5 ) s 1 0 – s 1 5S12 3.2.2. Exclusion criteria Parents of children diagnosed with other pervasive develop- mental disorders were excluded from the study. 3.3. Data collection 3.3.1. Phase 1 Both qualitative and quantitative methods were utilized during this phase. Key informant interviews (KIIs) were conducted with two developmental pediatricians and one parent who was the president of the University of the Philippines College of Allied Medical Professions (UP CAMP) chapter of the Autism Society of the Philippines (ASP). Two focus group discussions (FGDs) were conducted. The first FGD comprised of parents of
  • 10. children with autism being seen at the Development and Behavioral Studies Unit of the Philippine General Hospital. The second FGD was attended by parent members of the ASP. Data from the KIIs and FGDs were utilized to generate a valid and reliable questionnaire. Reliability was tested on 99 parent-respondents. 3.3.2. Phase 2 The questionnaire generated from phase 1 was administered to 41 parents of children with autism, ages 2–6. A sample of 33 parents of children with autism was required to estimate the mean age at diagnosis of autism with a 1-year margin of error at 95% confidence level, and assuming a standard deviation of 2.9 years. The mean age at diagnosis was used in the computation of the sample size because early diagnosis and intervention is one of the most crucial points in the manage- ment of children with autism. 3.4. Statistical analysis Statistical analyses were performed using StataCorp. 2011. Stata Statistical Software: Release 12. College Station, TX: StataCorp LP. Thematic analysis was performed on qualitative data. Pearson's correlation and Cronbach's alpha were utili zed during reliability testing of the questionnaire. Descriptive statistics were reported in means and proportions. Associa- tions between categorical variables were tested using Chi - square statistic. For continuous variables, correlation analyses were done. 3.5. Ethical considerations Written informed consent was obtained from all participants. They were assured of confidentiality, privacy and anonymity. Recruitment was done by investigators who had no profes-
  • 11. sional relationship with the participants. 4. Results 4.1. Reliability of questionnaire The 22 items in the scale on parental perceptions on autism were grouped into four general domains: (1) initial attitudes towards autism, (2) perceived parental psychosocial factors associated with autism, (3) perceived parental biologic causes of autism, and (4) perceived child-related factors associated with autism. A negative correlation in one item was accounted for by a positive statement (compared to others that were negatively stated), and hence was recoded. In the final questionnaire, all 22 items were retained. 4.2. Demographic characteristics There were 3 respondents for the KIIs, 15 (6 parent-pairs and 3 parents who attended without their partners) for the FGDs, and 41 for the survey. The demographic characteristics of the parent respondents in the FGDs and survey are shown in Table 1. The mean age was 39 years for the FGD group and 36 years for the survey group. Majority of the respondents in both groups were female and married. Roughly, half of the respondents in both groups were employed. There was one respondent in the KII and one in the FGD who had two children with autism. The parent-respondents represented a total of 10 children with autism in the FGD group and 41 children in the survey group (Table 2). 4.3. General knowledge and parental perceptions on autism
  • 12. 4.3.1. Qualitative analysis from KIIs and FGDs Since two of the respondents in the KIIs were child develop- ment specialists and one was a highly informed parent, they all had scientific views about autism. They defined autism as a triad of conditions involving impairments in communi - cation and social skills, as well as restricted, repetitive, and stereotyped patterns of behavior. They claimed that no specific c l i n i c a l e p i d e m i o l o g y a n d g l o b a l h e a l t h 3 ( 2 0 1 5 ) s 1 0 – s 1 5 S13 cause has been directly linked to autism, nor is there a cure for the condition, to date. However, they all agreed that early intervention has been shown to produce optimum results for children with autism. During the FGDs, the parents were asked about their initial thoughts and perceptions about their child's behavior. Their answers revolved around the following: they were initially afraid to be told that their child had autism, many were in denial, other parents blamed one another, and many were hoping for their children to catch up with others. The parents had varied views about possible causes of autism. Some of the answers given were hereditary, old age of one or both parents, absence of one parent while growing up, maternal stress or drug intake during pregnancy, vaccines particularly MMR, short time interval between birth of two children, and mercury content of food. The parents were still generally confused as to how their child acquired the condition. Since the respondents of this study were recruited through institutions/centers catering to children with autism, they had access to various types of interventions, which included one or a combination of the following: speech, occupational or physical therapy, special education, medicines, and develop-
  • 13. mental monitoring. The parents had mixed responses with regard to satisfaction with these interventions. Some noted marked improvements in their child's behavior while others only noted minimal changes. Many of the parents had to give up their career/work to take care of their child. They were often worried about growing old, and concerned about ‘‘who will be there to help and support them?’’ There were also those who clamored for better support from the government for persons with autism. 4.3.2. Quantitative analysis from survey Parental perceptions on autism were elicited during the survey through 5-point Likert scale items grouped into four general domains. A mean score of greater than 4 for each item meant that they generally disagreed with that statement. In terms of parental attitudes on autism, the parents agreed with the statements that they initially thought their child would eventually catch up with other children, they were initially in denial of the diagnosis, and were afraid of receiving an official diagnosis. For parental psychosocial factors, parents reported that lack of finances and long waiting period prior to being seen by a specialist hindered them from seeking professional consult. They disagreed with the statements that autism can be caused by a curse or is a consequence of parental sin/s. The mean scores of the respondents were neutral in terms of parental biologic factors, which can cause autism, i.e. autism is hereditary, eating mercury-contaminated food by Fig. 1 – Timeline from initial recognition of symptom the mother during pregnancy, maternal stress, illness or trauma during pregnancy, and late age of one or both parents.
  • 14. In the same manner, responses were also neutral for statements on child-related factors, which can cause autism, i.e. complications acquired during and after childbirth, vaccination in children, childhood illness or trauma before 1 year of age, and intake of certain food by the child. 4.4. Parental health-seeking behaviors 4.4.1. Qualitative analysis from the FGDs During the FGDs, the more commonly observed initial symptoms of autism were no speech or delayed speech, lack of interaction, nonresponse when called, playing alone, and lack of eye contact. Parents, or close family and friends, were the first to notice most of the signs of autism. Their first initial professional consult was with a general pediatrician and the children were mostly aged 2 at the time of first consult. Most of the children underwent hearing tests to rule out a hearing defect. Some parents were unable to bring their child immediately to a specialist for the following reasons: lack of finances, lack of knowledge on who to consult, or a long waiting time (sometimes as long as 6 months) for an appointment with a developmental pediatrician. 4.4.2. Quantitative analysis from survey From the survey on 41 parents, the first recognized impair- ments in their child with autism were qualitative impairment in social interaction (54%), qualitative impairment in commu- nication (34%), and restrictive, repetitive stereotyped patterns of behavior (12%). Family members/relatives were usually the first persons to recognize the child's symptoms (78%), followed by friends or neighbors (8%), teachers (7%), and doctors (7%). After recognition of symptoms, 34% of the parents each
  • 15. initially sought the opinion of a general or developmental pediatrician. There were parents who also consulted relatives or the internet (7% each); teachers, neurologists, or friends (5% each); and religious leaders (2%). The diagnosis of autism in their children was confirmed by developmental pediatricians in most cases (83%), and the rest by general pediatricians (7%), neurologists (7%), and therapists (3%). Majority of the parents (68%) no longer sought a second opinion. The mean age of the children at the time the initial symptoms was recognized was 24.42 months. First professional consult was sought at a mean age of 37.56 months; hence, there was a delay of 13.15 months. The mean age at confirmation of the diagnosis is 39.39 months, which is 14.98 months after initial recognition of symptoms. The interval from first professional consult to confirmation of the diagnosis is 1.83 months (Fig. 1). s to first consult and confirmation of diagnosis. c l i n i c a l e p i d e m i o l o g y a n d g l o b a l h e a l t h 3 ( 2 0 1 5 ) s 1 0 – s 1 5S14 Most of the children (54%) were diagnosed at less than or equal to 36 months and 46% were diagnosed at more than 36 months. There were no significant associations noted between baseline characteristics of parents or children and parental perceptions, nor between parental perceptions and their health-seeking behaviors.
  • 16. 5. Discussion 5.1. Parental perceptions on autism The parental attitudes with regard to their child's attitude or initial symptoms were similar for the FGD and the survey. Most of them were in denial and had hopes that their child would eventually catch up; they were afraid of getting an official diagnosis of autism for their child. Most parents continue to hope that their child would eventually catch up with the other children. When asked about their fears, majority expressed concerns about the care of their children in their old age. Parents in the study generally recognize that autism is a condition that is not yet fully understood, even by the scientific community. During the FGDs, biological causes surfaced more than psychosocial causes. The views were varied since these were combinations of what they heard from other people, what they read about autism from internet sources, and what they learned from the medical practitioners they have consulted. The questionnaire was designed to ask the parents about their initial perceptions regarding autism prior to seeking consult, including what they thought about the presenting symptoms. However, parents' recall may be tainted with their current knowledge of autism. The views expressed by the participants may not be the same for the general public whose children have yet to be diagnosed. In the qualitative survey, most responses were neutral – they neither agreed nor disagreed. This reflects the uncer - tainty that prevails in their minds with regard to the etiology of autism. Despite the uncertainty in the etiology of autism, parents were in strong agreement that autism is not due to a curse nor a consequence of parental sin/s.
  • 17. Parents in the study may no longer bear the same stigma of the parents in the past, where developmental and mental handicaps were blamed on faulty parenting styles or parental debts for their infractions. Majority of the parents in the FGD and the survey have a general idea that genes and the environment play a role in the phenotypic variability of autism. The present study showed that parents have different sources of information regarding health. Filipinos generally value the opinion of relatives and friends although majority of the respondents reported to a professional right away. A new and readily available source of informa tion for parents nowadays is the internet. Parents recognize the wealth of information available at their fingertips, so much so that a few parents in the study were able to reliably suspect autism in their child even before a professional consult. 5.2. Parental health-seeking behaviors Majority of parents in both the FGD and the survey noted impairment in social interaction and in communication as the initial symptoms of their children, majority of which were noted by family members and relatives. Impairment in social communication is more compatible with past researches7 than the result from the survey, which suggested impairment in social skills (54%) as the more common presenting symptom. Since the lack of appropriate language skills is usually a more obvious symptom, this new finding may suggest that parents may now be more keen in noting more subtle problems like poor social skills. Majority of the parents in the FGD group sought the opinion of general pediatricians for their children's symptoms. Initial symptoms were recognized at around 2 years old.
  • 18. First professional consult was sought at a mean age of 2.9 years in the FGD and 37.56 months or 3.13 years in the survey. There was a delay of roughly 3 months in the FGD group and 13.15 months in the survey group. The mean age at confirmation of the diagnosis in the survey is 39.39 months, which is 14.98 months after initial recognition of symptoms. This was mostly done by developmental pediatricians. Much of the delay was in the initial consult. Surprisingly, the authors did not see a long waiting period between the initial consult and confirmation of diagnosis in the survey. In the survey, the time difference between the initial consult and confirmation of the diagnosis was only 1.83 months. General pediatricians, as well as teachers, may also have a lower threshold for referral to a developmental pediatrician. This trend supports the call from many stakeholders to facilitate early diagnosis. Some parents in the FGD groups, however, were unable to bring their child immediately to a specialist due to lack of finances, lack of knowledge on who to consult, or a long waiting time for an appointment with a developmental pediatrician. There was a trend for earlier initial consult in both the FGD and survey groups. This implies several things: (1) parents are more aware of and are more open to reporting developmental concerns, (2) heightened societal awareness has made it easier for parents, clinicians, and other adults to identify problematic behaviors in children, (3) families may have better access to diagnostic services in the recent years compared to the past decade. There is an apparent drop in the age of diagnosis of these children, compared to previous studies.7 This pattern was also reported by Fountain et al. in their study that showed a decline in the median age of diagnosis for autism, from 4.4 years in 1992 to 3 years in 2001.13 Many of the parents in this study were open in sharing, were resourceful, empowered, and actively engaged in their
  • 19. child's care. The researchers also observed the relevance of having a support group for families, such as the ASP, which has become a venue for social and educational support for families living with autism. The results of this study showed some surprisingly encouraging trends. Parents, particularly those whose chil- dren are already enrolled in schools and therapy centers, are more aware about the intricacies of autism. They tend to disagree with previous myths about autism. There was a notable tendency for earlier diagnosis among the urban c l i n i c a l e p i d e m i o l o g y a n d g l o b a l h e a l t h 3 ( 2 0 1 5 ) s 1 0 – s 1 5 S15 parents in the study. Despite this, however, the mean age at formal diagnosis is still a little older than the recommende d age of 36 months or less. Indeed, there is still much room for improvement in terms of timing of diagnosis. It is important to note at this point, however, that early diagnosis does not necessarily equate to early intervention. Future studies focusing on the timing of intervention among children with autism in the Philippines would yield relevant information. This study was able to capture parents whose children were already receiving active interventions for their condition, and thus possibly accounting for the promising trends mentioned earlier. The researchers recommend actively searching out those children (and their parents) who are already exhibiting symptoms of autism but have not yet entered the healthcare system. This population might reveal an entirely different story and possibly highlight other areas of concern. The work for children with autism is far from finished. There is still much need for collaborative efforts among different sectors for the welfare of this special population.
  • 20. Conflicts of interest The authors have none to declare. r e f e r e n c e s 1. Reyes A, Herrin J. A 5-year review of referrals to the developmental pediatrics section of a major tertiary hospital. Acta Medica Philippina. 2009;43(3):12–17. 2. Carbone P, Davis T, Farley M. Primary care for children with autism. Am Fam Physician. 2010;81(4):454–460. 3. Volkmar F, Chawarska K. Autism in infancy and early childhood. Annu Rev Psychol. 2005;56:315–336. 4. Wiggins L, Balo J, Rice C. Examination of the time between first evaluation and first autism spectrum diagnosis in a population-based sample. J Dev Behav Pediatr. 2006;27:79–87. 5. Daley C. From symptom recognition to diagnosis: children with autism in urban India. Soc Sci Med. 2004;58(7):1323– 1325. 6. Pierce K, Carter C, Weinfeld M. Detecting, studying, and treating autism early: the one-year well baby check-up approach. J Pediatr. 2011;159:458–465. 7. Avendaño EL, Berroya MAG, Ortiz MH, et al. A profile of pervasive developmental disorders. Philipp J Neurol. 1998. 8. Moral-Valencia M, Tanglao-Salazar N, De Sagun R, et al. Factors implicated in delayed consultation of children with neurodevelopmental disabilities. St Tomas J Med. 2004;52 (1):16–23.
  • 21. 9. Shattuck P, Durkin M, Maenner M, et al. Timing of identification among children with autism spectrum disorder. J Am Acad Child Adolesc Psychiatry. 2009;48:474– 483. 10. Quilendrino MI. Screening and evaluation for early language delay in children 12 to 36-months old in an urban community health center. Philippine General Hospital, October 2011, unpublished. 11. Gray D. Lay conceptions of autism: parents' explanatory models. Med Anthropol. 1995;16:99–118. 12. Greydanus DE, Toledo-Pereyra LH. Historical perspectives on autism: its past record of discovery and its present state of solipsism, scepticism and sorrowful suspicion. Pediatr Clin North Am. 2012;59:1–11. http://dx.doi.org/10.1016/j. pcl.2011.10.004. 13. Fountain … 4 Discussion 3: Higher Education Institution Policy Proposal Author’s Name Institutional Affiliation Course Name Instructor Due Date
  • 22. Discussion 3: Higher Education Institution Policy Proposal According to Farber (2016), enrollment in colleges is continuously declining. This trend can be attributed to various factors such as failure to be accepted to one's school of choice, high tuition, and low diversity, among others. Hence, institutions are seeking ways of increasing students' enrollment rates. In this regard, a faculty in the business school can offer a vital perspective in enacting such changes in an institution since it facilitates direct interaction between administrators and students. There are three major themes, which higher education administrators should address if they want to increase students' access to higher education. First, there is the rise of online degree programs, which offers one with the flexibility to learn from remote locations at convenient times. Second, there is the aspect of diversity, which makes people from various backgrounds feel valued in an instituti on. Finally, there is the issue of high tuition fees, which locks out students from low socioeconomic backgrounds. A policy that a faculty in a business school can enact to enhance students' access to affordable and high-quality education is to offer high-quality degree programs on online platforms. Currently, there is a limited number of quality degree programs that can be accessed on online platforms. However, an institution that fully adopts online programs can cover all the three themes identified above. Online applications will ensure that there is no limit to the number of students that can enroll in an institution since there are no considerable infrastructure demands to host the learners. Such a policy will ensure that a student can enroll in an institution of his/her choice at considerably low tuition rates. More so, such a system will increase diversity in a learning institution. For lessons that require practicals, the institution can liaise with local partners so that there is a schedule on when a batch of students goes for practicals. A faculty in a business school is best placed to consider the logistics of student learning in such a setup.
  • 23. Reference Farber, M. (2016). College enrollment dips as more adults ditch degrees for jobs. Retrieved from https://fortune.com/2016/12/19/college-enrollment-decline/ Review Article Parent Training Interventions for Toddlers with Autism Spectrum Disorder Audrée Jeanne Beaudoin, Guillaume Sébire, and Mélanie Couture Université de Sherbrooke, Sherbrooke, QC, Canada J1H 5N4 Correspondence should be addressed to Mélanie Couture; [email protected] Received 23 January 2014; Revised 25 March 2014; Accepted 12 April 2014; Published 7 May 2014 Academic Editor: Manuel F. Casanova Copyright © 2014 Audrée Jeanne Beaudoin et al. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. Background. Now that early identification of toddlers with autism spectrum disorder (ASD) is possible, efforts are being made to develop interventions for children under three years of age.
  • 24. Most studies on early intervention have focused on intensive and individual interventions. However, parent training interventions that help parents interact and communicate with their toddlers with ASD might be a good alternative to promote the development of their child’s sociocommunicative skills. Objective. This review aims to systematically examine (1) the use of parent training interventions for children with ASD under three years of age and (2) their effects on children’s development, parents’ well -being and parent-child interactions. Methods. Systematic searches were conducted to retrieve studies in which at least one parent was trained to implement ASD-specific techniques with their toddlers (0– 36 months old) with a diagnosis of or suspected ASD. Results. Fifteen studies, involving 484 children (mean age: 23.26 months), were included in this review. Only two of them met criteria for conclusive evidence. Results show that parents were able to implement newly learned strategies and were generally very satisfied with parent training programs. However, findings pertaining to the children’s communication and socioemotional skills, parent- child interactions, and parental well-being were inconclusive. 1. Introduction Autism spectrum disorder (ASD) is characterized by difficul - ties in social interaction and communication and by repeti - tive and stereotyped behaviors. With an estimated prevalence of up to 1/88 children in the US [1], ASD is amongst the most frequent and severe developmental disorders. In the United States, ASD is associated with an estimated annual cost between 35 and 90 billion dollars [2, 3].
  • 25. In response to parents’ concerns about their child’s development that are present as early as 12 months of age [4], knowledge about and strategies to identify young toddlers with ASD are emerging [5]. It is now possible to identify a child with ASD in the first two years of life based on sociocommunicative behaviors [6]. Now that early identification of toddlers with ASD is possible, efforts must be made to develop interventions for these young children. In 1987 and 1993, Lovaas and colleagues first described the potential efficacy of early intervention for children with ASD by reporting less restrictive school place- ment and higher IQ in the group of children who received an intensive behavioral intervention compared to children in the control group [7, 8]. More recently, early interventions have been associated with greater developmental gains and more reduction in autistic symptoms than interventions provided later on [9, 10]. Reilly and colleagues [11] reported that typi - cally developing children between 12 and 24 months of age go through an important period of development that results in more advanced social communication abilities. Interventions in this time frame are crucial to prevent an increase in the gap between children with ASD and their typically developing peers [12]. Also, the significant neuroplasticity in young children emphasizes the importance of very early intervention [13]. In fact, many clinical studies [14–20] have described the interaction between infants’ brains and their social environment and its impact on the development of infants’ social and language brain circuitry [12]. Knowing that each experience influences the brain structure and function of young children, interventions with toddlers with ASD have the potential to influence their developmental trajec- tories towards a more typical and behavioral development [12, 13, 21].
  • 26. Hindawi Publishing Corporation Autism Research and Treatment Volume 2014, Article ID 839890, 15 pages http://dx.doi.org/10.1155/2014/839890 http://dx.doi.org/10.1155/2014/839890 2 Autism Research and Treatment Most research on early intervention focused on early intensive and individual interventions (20 to 40 hours per week). Despite their demonstrated efficacy for preschoolers with ASD [8, 22], intensive individual interventions are expensive and time-consuming and were originally devel- oped for children between three and five years of age who have different learning needs than younger children. Infants from 12 to 36 months of age have specific developmental abilities and learning capacities, which require interventions that are tailored to them. Parent training interventions may be an effective alternative to support the learning capacities of toddlers with ASD [23]. Moreover, parent training interven- tions are based on language development in very young chil - dren, which has been demonstrated to be dependent on the language used by their parents [24]. Thus, teaching parents how to interact and communicate with their toddlers with ASD through parent training interventions might promote the development of their child’s sociocommunicative skills. Few researchers have reviewed the effect of parent train- ing interventions specifically for young children with ASD. At this time, most of the literature on early parent training interventions for children with ASD focuses on children under seven [25–27] or nine years of age [28]. No review focusing on parent training interventions for toddlers under
  • 27. 3 years of age has been published to date. Given the previously described potential benefits of very early parent-mediated interventions, there is a need to understand if this type of intervention is effective specifically for those young children. This review aimed to systematically examine the use of parent training interventions for children from 0 to 36 months of age at risk of or with a diagnosis of ASD and their effects on children and parents. In particular, the following questions were addressed. (1) What are the parent training programs used for children from 0 to 36 months of age with a diagnosis of or suspected ASD? (2) What are the effects of parent training programs on (a) child development, (b) parental well-being, and (c) parent-child interactions? 2. Method 2.1. Search Procedures. Systematic searches were conducted in May and June 2013 in four electronic databases: CINAHL, ERIC, PubMed/Medline, and PsycINFO. The search was limited to articles published in English or French in peer - reviewed journals. Searches were conducted using combi- nations of the three keywords (and synonyms): “autism spectrum disorder” (e.g., autism, pervasive developmental disorder), “toddlers” (e.g., infants, preschoolers, and early intervention), and “parent training” (e.g., parent coaching, parent-mediated intervention, and caregiver-mediated inter- vention). We also searched in the Cochrane Database of Systematic Reviews, looked in Google Scholar, and exam- ined bibliographies of systematic and nonsystematic reviews found in any of the six databases. Reference lists of articles that met inclusion criteria were also examined to identify articles that had not been found through electronic searches.
  • 28. We found eleven additional studies using these alternative procedures. 2.2. Inclusion and Exclusion Criteria. To be included in the review, studies had to meet four inclusion criteria as follows: (1) all children had to be at risk of or have had a diagnosis of ASD (including pervasive developmental disorder, autistic disorder, Asperger syndrome, and pervasive developmental disorder not otherwise specified); (2) more than 50% of the children had to be 36 months of age or less at the time of recruitment (if this informa- tion was not available, the mean age of participants at recruitment had to be under 36 months) and all children in the study had to be 5 years old or less; (3) at least one parent (referring to fathers, mothers, foster parents, grandparents, or other relatives) had to be trained by an education or health professional to use ASD-specific techniques to promote the child’s development. Parents must have received ongoing supervision and support from the professional. The training could involve individual and/or group coach- ing at home and/or in a clinic environment. Studies that assessed different types of interventions (e.g., individual intensive interventions) were excluded from the review if they did not report effects of parent training interventions separately from other types of interventions; (4) effects of the intervention had to be reported by quan- titative data. Quantitative data from mixed methods studies could be included if they reported interven- tion effects.
  • 29. 2.3. Data Extraction and Coding. Studies included in this review were summarized in terms of (a) participant char- acteristics, (b) dependent variables and measurement tools, (c) intervention characteristics (including program type, strategies, setting, frequency, duration, and goals), (d) inter - vention outcomes (directly after intervention and at followup, when appropriate) on children, parents, and parent-child interactions, and (e) certainty of the evidence. Parent training outcomes (effects on children, parents, and parent-child interactions) were summarized as reported in the original paper (i.e., pre-post change, statistical signif- icance, or effect size). Considering that a systematic review is a scientific tool that can be used by healthcare providers, consumers, researchers, and policy makers [29] to “evaluate existing or new technologies and practices efficiently and consider the total available data” [30], outcomes in each article were then classified into four categories (positive, mixed, no, and negative effects) according to the magnitude of changes due to parent training interventions. Previous systematic reviews used the three first categories [31–33]. Results were classified as “positive” if visual analysis of the results of single case studies showed an increase in abilities for all participants between baseline and intervention or if there was a statistically significant between-group difference in experimental designs. “Mixed” results were defined as Autism Research and Treatment 3 improvement in some but not all participants in single- case designs or a trend short of statistical significance in between-group designs. If no participants in single-case studies benefited from the intervention or if there was
  • 30. no statistically significant improvement in between-group designs, results were classified as “no effects.” Finally, the research team added a fourth category to the original 3- level classification, namely, “negative” effects. Results were classified as “negative” if visual analysis of the results of single- case studies demonstrated deterioration in abilities in most participants between baseline and intervention or if there was a statistically significant between-group difference in favor of the control group in experimental designs. However, none of the studies reviewed reported negative effects of the intervention. The studies’ methodological rigor could be assessed based on several classification systems. The research team used a 3-level classification system (suggestive, preponderant, and conclusive evidence) used in previous reviews [31, 32] to summarize the level of evidence for each study reviewed. “Suggestive” evidence was the lowest level of evidence. Studies classified at this level did not use a true experimental design. They might have used pre- or quasi-experimental designs including an AB-design or pre-post intervention design without a control group. The next level of certainty was “pre- ponderant” evidence, which means that there was a strong, but not irrefutable, conclusion. Studies included in this second level of certainty needed to (a) use a true experimental design, (b) have adequate interobserver agreement (i.e., at least 80% fidelity) for at least 20% of evaluation sessions, (c) have an operationally defined dependent variable, and (d) provide sufficient details about the intervention for replication of procedures. The strongest form of evidence was “conclusive.” To provide conclusive evidence, studies had to comply with all the attributes of the preponderant level plus contain (a) design features that provided at least some control for alternative explanations for intervention outcomes and (b) a measure of treatment fidelity to assess the degree of
  • 31. implementation of treatment-specific strategies by parents and/or therapists throughout the program. 3. Results 3.1. Description of Studies. Six hundred sixty-nine (669) articles were retrieved from the electronic searches. After removing duplicates and elimination based on the title, 174 abstracts remained. Based on these 174 abstracts, we eliminated 86 articles. The remaining 91 full-text articles were further assessed for eligibility. At this point, 75 articles were excluded because they described intervention models rather than assessing their effects (� = 7), children had developmental disabilities other than ASD (� = 4), children were older than 36 months (� = 60), studies reported exclusively qualitative data (� = 1), studies did not report results specifically for the parent training intervention ( � = 1), or studies focused exclusively on a specific component of parent training rather than the whole intervention (� = 2). Of the remaining 16 articles, Vismara et al.’s paper [34] concerned the single participant included in a previous case study [35]. Therefore, we excluded the single case study [35] to avoid redundancy. The research team also contacted Gerald Mahoney, who ascertained that most children in Mahoney and Perales’ studies [36, 37] were different. Despite a little overlap, these two studies were included in the review. A total of 15 studies were analyzed for this review. Table 1 describes the main features of each of these 15 articles. 3.1.1. Participants. A total of 484 children with a mean age of 23.26 months were included in this review. Those children were diagnosed with ASD (� = 248; [34, 36–40, 42–45]) or identified as being at risk of ASD based on either the presence of early markers (� = 156; [10, 41, 46]) or because they were infant siblings of probands with ASD (� = 80; [47, 48]).
  • 32. Two hundred seventy-seven (57%) parent-child dyads received a parent training intervention, whereas the remain- ing 207 children were controls. Gender was reported for 253 of the 277 toddlers involved [10, 36, 37, 39–45, 47]; 192 children were male (76%) and 61 were female (24%). Primary caregiver gender was detailed in seven of the 15 studies reviewed [36, 37, 40–42, 45, 47]. Most primary caregivers who participated in parent training programs in these studies were female (� = 95; 99%), compared to only one male primary caregiver (1%). Two papers reported training of relatives other than mothers or fathers. Kasari and colleagues [43] included a grandparent as the primary caregiver for two children. Also, Vismara et al. [34] included a grandmother as an observer during parent training sessions rather than as an active participant, who was the child’s mother in this case. The mean age of parents (or other caregivers) receiving training ranged from 27.3 [41] to 36 years [40]. 3.1.2. Intervention Types. Parent training interventions for children with a diagnosis of or suspected ASD may be clas- sified based on their theoretical paradigms or their targeted goals. Based on their theoretical paradigms, interventions may be positioned on a continuum from pure behavioral inter- ventions to sociopragmatic interventions [49]. Interventions based on a behavioral paradigm stem from Lovaas [7] and colleagues’ work and are characterized by a high level of structure in which a therapist prompts the child’s behavior. When the child responds correctly, the therapist reinforces the behavior. At the other end of the continuum, socioprag- matic interventions are represented by the DIR Floortime model [50]. Sociopragmatic interventions are characterized
  • 33. by following the child’s lead through spontaneous play activities and using those activities to enhance the child’s learning. Eight of the 15 articles reviewed used interventions mainly based on the sociopragmatic paradigm [36–39, 41, 44, 45, 47] and two articles reported more behaviorally based interventions [40, 48]. The remaining five articles incorporated strategies from both paradigms [10, 34, 42, 43, 46]. For example, the Early Start Denver Model parent training program used by Vismara and colleagues [34] and Rogers and colleagues [10] integrates behavioral techniques, 4 Autism Research and Treatment Ta bl e 1: D es cr ip tio n of st ud ie s. (a )
  • 111. pa re nt tr ai ni ng 6 Autism Research and Treatment (b ) C on tin ue d. St ud ie s In te rv en tio n ch
  • 129. ur s Autism Research and Treatment 7 such as repetition and the ABC structure of activities w ith sociopragmatic strategies, including intervention through activities chosen by the child in natural settings [51]. Interventions can also be classified as either ability- focused or comprehensive. Focused interventions are indi - vidual instructional strategies used to develop specific abil- ities in children with ASD [52]. Ten papers used focused interventions [38, 40–48]. Abilities targeted in these inter- ventions included communication [45, 46, 48], joint attention [38, 40–44], and parent-child relationship [47]. On the other hand, comprehensive treatment models were studied in five articles [10, 34, 36, 37, 39]. These interventions use sets of practices with multiple components for a broader developmental impact on core deficits in ASD [53]. They may include development of communication, social interaction, cognition, play, and autonomy. Notwithstanding the type of intervention, development of communication was a main goal of all 15 papers. In fact, difficulties with communication are a core deficit in ASD and frequently the main concern of parents. Eight of the 15 articles used a comparison group, which allows for a better estimate of the effect of the intervention on children and parent outcomes. Interventions received by the 233 participants in comparison groups varied widely. Ninety- six of these participants (41%) from three studies [39, 45, 47] did not receive any treatment while, in the other five studies, 137 participants (59%) received treatment “as usual” [44, 46]
  • 130. or a mixture of interventions [10, 38, 43]. 3.1.3. Setting. All 15 articles reported individual parent ses - sions, six of which took place in the family home [38, 39, 41, 44, 46, 47], at a clinic in six studies [10, 34, 40, 42, 43, 45], and either at home or in a clinic in three studies [36, 37, 48]. Mahoney and Perales [36, 37] gave families the choice of setting (clinic- or home-based) for the parent training program. Steiner and colleagues [48] varied the setting of the parent training: 8 sessions took place in a clinic and 3 at home. In this paper, clinic-based sessions were focused on teaching new strategies while home-based sessions focused on generalization of the newly acquired techniques at home. Also, two studies used some parent group classes that took place in a clinical setting [39, 46]. 3.1.4. Intensity. Total time of interventions received varied between five and 32 hours (mean = 18 hours). Most studies involved parent training sessions for a total time between 10 and 20 hours [10, 34, 40–43, 47, 48] over a period of two to six months [10, 34, 39, 41–43, 46–48]. Intervention programs that offered more than 20 hours of intervention lasted at least 12 months [36–38, 44]. Only one paper assessed the effects of a shorter, but intensive, parent training program. Wong and Kwan [45] studied an intensive 2-week parent training intervention during which parents attended ten 30-minute sessions. 3.1.5. Teaching Strategies. Studies incorporated a range of strategies to teach parents new skills. Some articles reported the use of only one [42, 43, 47] or two [46] teaching strategies. However, most studies used many different teaching strate- gies to enhance parents’ learning; the mean number of strate- gies described in the articles …
  • 131. 1 8 Increasing Generalization by Training Teachers to Provide Parent Training for Young Children with Autism Spectrum Disorders Brooke Ingersoll and Anna Dvortcsak Children with autism spectrum disorders (ASDs) have pervasive deficits in social and communication skills, as well as restricted interests and attention, which interfere with learning and disrupt family life (American Psychiatric Association, 2000). The educational needs of children with ASDs are significant, with most chil- dren requiring many hours of intensive intervention provided by highly trained staff. Interventions that are applied early and intensively have been found to lead to significant improvements in child outcome (Dawson & Osterling, 1997; National Research Council [NRC], 2001). In fact, after a comprehensive review of the scientific, theoretical, and policy literature surrounding the education of young children with ASDs, the NRC (2001 recommended that “educational services should include a minimum of 25 hours a week, 12 months a year, in which the child is engaged in systematically planned, developmentally appropri- ate educational activity aimed toward identified objectives” (p.
  • 132. 220). The educa- tional requirements make providing effective intervention for children with ASDs within a cost-effective, public program a challenge for school districts throughout the nation. With the growing number of children qualifying for special education services under the ASD eligibility, school districts are hard pressed to provide the level of intensity required to educate their toddler and preschool-age students with ASDs. Many publicly funded early intervention (EI) and early childhood special education (ECSE) programs have difficulty meeting the recommended number of hours (Hume, Bellini, & Pratt, 2005). Even when provided with the recommended number of hours, many children with ASDs still struggle to generalize gains shown in treatment to meaningful life activities (Schreibman, 1988). This lack of generalization is an issue for all interventions; however, children with ASDs seem to have more pronounced generalization deficits than children with developmental delays (Schreibman, 1988). Thus, it is necessary to develop intervention models for young children with ASDs that maximize opportunities for generalization and maintenance of skills. Whalen_Ch08.qxd 11/24/08 1:06 AM Page 1
  • 133. 2 Ingersoll and Dvortcsak One effective strategy for promoting generalization is to provide instruction in the natural environment (Sandall, Hemmeter, Smith, & McLean, 2005). The natural environment has been defined as routines, materials, and people familiar to the child and family (Dunst, Hamby, Trivette, Raab, & Bruder, 2000). This approach has been adopted by the Individuals with Disabilities Education Act of 1990 (PL 101-476) for the education of young children with special needs (Walsh, Rous, & Lutzer, 2000); it requires that services provided by the public sector use more naturalistic approaches to intervention (Wetherby & Woods, 2006). There is still debate as to which settings constitute the natural environment for young chil- dren with ASDs in relation to service provision (e.g., center vs. home, group vs. one-to-one). However, interventions that each families how to use intervention strategies are an excellent option since the family is the most “natural environ- ment” for young children. A further benefit of teaching parents is that it can lead to increased hours of intervention, making it more likely that families can achieve the recommended intensity of intervention for their children with ASDs. BENEFITS OF PARENT TRAINING A significant body of research demonstrates the benefit of
  • 134. teaching parents of chil- dren with disabilities to implement the intervention themselves (Shearer & Shearer, 1977). Although less research exists for children with ASDs, parent train- ing has also been shown to be effective for this population (see McConachie & Diggle, 2007, for a review). A variety of intervention methods have been taught to parents of young children with ASDs, including discrete trial training (e.g., Smith, Groen, & Wynn, 2000) and structured teaching (Ozonoff & Cathcart, 1998). Most parent-implemented approaches are naturalistic, meaning that instruction occurs around the child’s focus of interest and during meaningful routines and activities. For this reason, only naturalistic parent training approaches are reviewed herein. Several reasons exist for using a naturalistic approach with parents of young children with ASDs. First, naturalistic intervention strategies have been shown to be effective for teaching a variety of social-communicative skills, including language (see Kaiser, Yoder, & Keetz, 1992, for review), gestures (Ingersoll, Lewis, & Kroman, 2007; Warren, Yoder, Gazdag, & Kim, 1993), play skills (Stahmer, 1995; Thorp, Stahmer, & Schreibman, 1995), peer interaction (Pierce & Schreibman, 1995), and joint attention skills (Pierce & Schreibman, 1995; Whalen & Schreibman, 2003) in children with ASDs and developmental delays. Second, research indicates
  • 135. that naturalistic strategies lead to better generalization and maintenance (Charlop-Christy & Carpenter, 2000; Delprato, 2001; McGee, Krantz, & McClannahan, 1985; Miranda-Linne & Melin, 1992), as well as more spontaneous use of skills (Schwartz, Anderson, & Halle, 1989) than more structured teaching approaches. Finally, these approaches are more similar to natural adult–child interactions (Schreibman, Kaneko, & Koegel, 1991); this fact makes them more acceptable to parents and easier to implement in the course of daily routines. Indeed, research has shown that parents who were taught to use Pivotal Response Training (PRT), a naturalistic intervention, used more positive affect while teach- ing their children (Schreibman et al., 1991), and both the parents and children exhibited more happiness and interest and less stress during family interactions than families in which the parents were trained to implement highly structured behavioral techniques (Koegel, Bimbela, & Schreibman, 1996). Whalen_Ch08.qxd 11/24/08 1:06 AM Page 2 Training Teachers to Provide Parent Training 3 NATURALISTIC PARENT TRAINING APPROACHES Two general naturalistic intervention approaches have been used with parents:
  • 136. one approach based on the developmental, social-pragmatic (DSP) literature and one based on the naturalistic behavioral literature. Developmental, Social-Pragmatic Approaches DSP interventions are derived from research on typical parent– child interactions, which suggests a relationship between a parent’s responsiveness to a child’s behavior and the child’s level of social-communicative development (Bornstein, Tamis-LeMonda, & Haynes, 1999; Hoff-Ginsburg & Shatz, 1982; Mahoney & Perales, 2003; Prizant, Wetherby, & Rydell, 2000). Thus, the goal of developmen- tally based, parent-implemented interventions is to teach parents strategies to increase their responsiveness to the child’s behavior. These interventions share several common characteristics (Prizant et al., 2000): 1. Teaching follows the child’s lead or interest. 2. The adult arranges the environment to encourage initiations from the child. 3. All communicative attempts including unconventional (e.g., jargon, echolalia, hand leading, nonverbal protests) and preintentional communication (e.g., reaching and grabbing, eye gaze, crying, facial expressions, body postures) are responded to as if they are purposeful. 4. Emotional expressions and affect sharing are emphasized by
  • 137. the adult. 5. The adult uses simplified language around the child’s attentional focus. Several studies have examined the effectiveness of teaching parents to use DSP interventions with their children with ASDs. For example, Mahoney and Perales (2003) examined the efficacy of responsive teaching for promoting social- emotional functioning in young children with ASDs using a single-group, pre-/posttest design. In their study, 20 young children with ASDs and their moth- ers participated in an 8- to 14-month intervention in which the mothers were taught a variety of strategies that increased their responsiveness to their children’s behavior. At pre- and posttreatment (approximately 1 year later), the children and their mothers were videotaped while playing with a set of developmentally appropriate toys, and mothers were asked to complete the Infant Toddler Social Emotional Assessment (Carter & Briggs-Gowan, 2000) and the Temperament and Atypical Behavior Scale (Bagnato, Neisworth, Salvia, & Hunt, 1999). Mothers exhibited significant improvements in their responsiveness, and the children exhibited significantly higher ratings on social interactive behavior during the videotaped interactions from pre- to posttreatment. The children were also rated as showing significant improvements in social-emotional
  • 138. functioning on the two standardized rating scales at posttreatment. This study did not include a control group of children whose mothers did not receive training, so it is difficult to con- clude that the positive gains seen in the children were due to responsive teaching. However, there was a positive correlation between changes in the mothers’ level of responsiveness and changes in the children’s social interactive behavior on the videotaped observations. In addition, changes in maternal level of responsiveness Whalen_Ch08.qxd 11/24/08 1:06 AM Page 3 4 Ingersoll and Dvortcsak were predictive of a child’s improvements on the standardized assessments of social-emotional functioning. These findings are consistent with the authors’ hypothesis that maternal responsiveness promotes developmental gains in chil- dren with ASDs and other developmental disorders. Wetherby and Woods (2006) used a quasi-experimental design to examine the effectiveness of the early social interaction project, a developmentally based, parent-implemented intervention designed for very young children with ASDs. Seventeen at-risk children younger than 2 years and their families were selected
  • 139. to participate. Children were identified as at risk for ASDs based on the presence of a significant number of indicators from the Communication and Symbolic Behavior Scales Developmental Profile behavior sample (Wetherby & Prizant, 2002). Parents received individualized coaching twice per week in the home for a minimum of 12 months. These coaching sessions were focused on teaching the parents to use a variety of developmentally based intervention strategies during daily routines with their child. Participating children were assessed at pre- and posttreatment on the Communication and Social Behavior Scales (Wetherby & Prizant, 2003). An independent comparison group of 18 children who were referred for concerns of ASDs were also examined at age 3 years to determine developmental trajectories of children with ASDs who did not receive the parental intervention. The results suggested that the children whose parents were trained in early social interaction made statistically significant gains in a variety of social-communicative skills from pre- to posttreatment. In addition, the early social interaction participants scored significantly better than the comparison group at age 3 years on measures of social signals, rate of communicating, com- municative functions, and understanding. These findings suggest that the children whose parents received training
  • 140. made improvements over the course of a year on their social - communicative development and outperfor med a group of children who did not receive treat- ment at age 3 years. Although this study offers some preliminary evidence for the effectiveness of a developmental, parent-implemented approach because the participants were not randomly assigned, it is possible that the groups were not similar at intake. Interestingly, the early social interaction participants’ pretreatment profiles resembled the comparison group’s profiles, although the comparison group was an average of 1 year older. This finding could be interpreted to indicate that the treatment group would have continued to look similar to the control group at age 3 years had they not received treatment. However, additional research using a ran- domized or single-subject design is needed to conclude that the children’s changes were due to the intervention. In a randomized trial, Aldred, Green, and Adams (2004) examined the efficacy of a developmentally based, parent-implemented intervention on social- communicative development in young children with autism. Twenty-eight children with autism and their parents were randomly assigned to a treatment or a control group. Parents of the children in the treatment group participated in
  • 141. workshops, followed by individual coaching sessions that focused on teaching the parents to use a number of developmentally based intervention strategies with their child. After 1 year, the parents of the children in the treatment group showed improvements in their responsiveness towards their children on an observational Whalen_Ch08.qxd 11/24/08 1:06 AM Page 4 Training Teachers to Provide Parent Training 5 measure of parent–child interaction compared with parents in the control group. In addition, the children in the treatment group showed more improvement (reduced symptomology) on the Reciprocal Social Interaction subdomain of the Autism Diagnostic Observation Schedule (Lord et al., 2000), greater gains in expressive language as measured by the MacArthur Communicative Development Inventory (Fenson et al., 1993), and a greater increase in number of communication acts on an observational measure of parent– child interaction than the children in the control group. These studies offer preliminary evidence for the effectiveness of developmen- tally based, parent-implemented approaches for promoting social-communicative development in young children with ASDs. The studies found
  • 142. general improve- ments in social engagement (Mahoney & Perales, 2003) and general communica- tive behavior (Aldred et al., 2004; Wetherby & Woods, 2006). However, they did not examine whether the children also experienced increases in specific language behaviors, such as vocabulary or mean length of utterance. Thus, the effect of this approach on the development of more specific language skills is unknown. In addition, in each of these studies, parent training was conducted individually over an extended period of time. Therefore, it is unclear whether children with ASDs and their parents would benefit from a shorter or less intense parent train- ing format. This issue is particularly important because many publicly funded programs may not be able to offer such extensive parent education services. Naturalistic Behavioral Approaches Naturalistic behavioral approaches focus on teaching parents to use prompting, shaping, and reinforcement strategies to increase specific social-communicative skills in their child with ASD. In keeping with the naturalistic emphasis, parents are taught to use these teaching strategies around their child’s focus of interest and within daily routines and activities (Kaiser et al., 1992). Parent-implemented interventions using a naturalistic behavioral approach share the following charac-
  • 143. teristics (Delprato, 2001; Kaiser et al., 1992): 1. The learning environment is loosely structured . 2. Teaching occurs within ongoing interactions between the child and the adult. 3. The child initiates the teaching episode by indicating interest in an item or activity. 4. Teaching materials are selected by the child and varied often. 5. The child’s production of the target behavior is explicitly prompted. 6. A direct relationship exists between the child’s response and the reinforcer. 7. The child is reinforced for attempts to respond. A large body of work has examined the effectiveness of naturalistic behav- ioral interventions for teaching language skills to children with ASDs and other developmental disorders (see Kaiser et al., 1992, for review). Among this litera- ture, several studies have trained parents to be the intervention providers. For example, Laski, Charlop, and Schreibman (1988) used a multiple-baseline design Whalen_Ch08.qxd 11/24/08 1:06 AM Page 5
  • 144. 6 Ingersoll and Dvortcsak to examine the effect of teaching eight parents to use the natural language paradigm, now referred to as PRT, with their children with ASDs. The results suggested that parents increased the frequency with which they required their children to speak. In addition, all children increased their frequency of speech with their parents. These increases generalized to three nontraining settings, suggesting that once the parents learned the intervention techniques, they were able to elicit their child’s language in a variety of environments. In addition, research has shown that parents can also learn naturalistic behav- ioral intervention strategies for increasing other social - communicative skills, including imitation, joint attention, and play. For example, Ingersoll and Gergans (2007) taught three parents naturalistic intervention strategies to increase their children’s object and gesture imitation during play. All parents improved their abilities to use the intervention techniques, and their children showed concomi- tant improvements in their imitation skills. Rocha, Schreibman, and Stahmer (2007) taught three parents to teach their children with autism to respond to joint attention bids. Children improved their abilities to respond as well as to initiate joint attention, despite the fact that the intervention did not directly target joint
  • 145. attention initiations. Gillett and LeBlanc (2007) taught three parents to use the natural language paradigm with their children with autism; they found that, in addition to improvements in spontaneous and prompted language, two of the children also showed improvements in their use of appropriate play. These studies have mainly used single-subject designs with a small number of participants, which limits the generalizability of the results to a wide range of children with ASDs and their parents. However, the use of an experimental design allows for the determination that changes in the parents’ behavior directly affect their children’s behavior. Combined Approaches One additional naturalistic intervention approach has been to combine interven- tion strategies from both the DSP and naturalistic behavioral models with the hope of developing even more powerful interventions. For example, Kaiser, Hancock, and Niefeld (2000) used a multiple-baseline design to examine the effi- cacy of parent-implemented enhanced milieu teaching with six mother–child dyads. This intervention included both naturalistic behavioral strategies designed to teach specific language targets and DSP strategies to increase parent respon- siveness. Parents learned a variety of naturalistic behavioral
  • 146. strategies to use with their children with ASDs via 24 weekly coaching sessions. Although coaching was conducted in a clinic, all parents generalized their use of the strategies to the home and maintained their use of the strategies (although at a lower rate than posttreat- ment) at a 6-month follow-up. All children in this study showed an increase in their use of language targets (e.g., two-word requests, action verbs, attribute object combinations), and most children also increased the complexity and diversity of their language. Not sur- prisingly, those children who exhibited less significant communication delays made the most gains in productive language. This study indicates that a parent- implemented naturalistic behavioral approach combined with responsiveness strategies can be effective for increasing specific social - communicative skills. However, additional research is needed to determine whether the combined approach is more effective than either component implemented in isolation. Whalen_Ch08.qxd 11/24/08 1:06 AM Page 6 Training Teachers to Provide Parent Training 7 ADDITIONAL BENEFITS OF PARENT TRAINING
  • 147. Parent training appears to confer a number of other benefits when compared with therapist-implemented interventions. For example, one early study compared the effects of teaching parents to implement behavior therapy with their child to clinician-implemented intervention (Koegel, Schreibman, Britten, Burke, & O’Neill, 1982). Parents in the parent training group received 5 hours per week of training with their child until mastery for a total of approximately 25–50 hours; the clinic treatment group received 4 1/2 hours of treatment per week for 1 year for a total of approximately 225 hours. The results indicated that children in both groups made similar gains when observed with the treatment provider, but chil- dren in the parent training group were more likely to respond appropriately to parent questions and directions in the home. This finding indicates that parent-implemented intervention leads to better generalization than therapist- implemented intervention and requires significantly fewer hours of therapist time. In addition, parents in the parent training group exhibited a significant increase in the amount of recreational/leisure activities they participated in, whereas parents in the clinic treatment group showed no change. Parent-implemented interventions for young children with ASDs are compat- ible with recommendations from the NRC and the Individuals with Disabilities
  • 148. Education Act regarding teaching within the natural environment. More impor- tantly, the research suggests that parent training is an effective intervention approach and leads to better generalization than traditional therapist-delivered services. In addition, it has been shown to improve other aspects related to family functioning and allows for an increase in the number of hours of intervention a child receives per week, without an increase in the number of hours of direct inter- vention provided by professionals. Given these findings, the NRC’s Committee on Educational Interventions for Children with Autism concluded, As part of local educational programs and intervention programs for children from birth to age 3, families of children with autistic spectrum disorders should be pro- vided the opportunity to learn techniques for teaching their child new skills and reducing problem behaviors. (NRC, 2001, p. 216) OBSTACLES TO IMPLEMENTATION Although parent training is now considered an essential component of successful early intervention programs for children with autism (NRC, 2001), formal parent training programs are still the exception rather than the rule in
  • 149. community-based ECSE settings for children with ASDs age 3–5 years (Hume et al., 2005). There are several obstacles that can prevent the inclusion of parent training programs in ECSE classrooms. The first obstacle involves the structure of most empirically based parent training programs, which are typically conducted individually with the parent, child, and parent educator once to twice per week over many months (Aldred et al., 2004; Kaiser et al., 2000; Mahoney & Perales, 2003; Wetherby & Woods, 2006). While this structure may be appropriate for private services or EI services delivered in the home, most publicly funded ECSE programs for children with ASDs older than 3 years are provided in a classroom setting that allows very Whalen_Ch08.qxd 11/24/08 1:06 AM Page 7 8 Ingersoll and Dvortcsak little time for teachers to meet individually with a parent and child. This differ- ence makes it difficult for most special educators serving children with ASDs in a classroom setting to envision using these models within their programs. To increase the likelihood that ECSE staff will include parent training in their cur- riculum, it is important to develop a parent training format that works within a
  • 150. classroom setting. A second obstacle to the inclusion of parent training in community-based programs is the lack of quality parent training materials developed for families of children with ASDs. Many of the empirically based programs mentioned in the literature have developed materials for parent training; however, because they are typically conducted in a one-to-one setting, they lack many of the features neces- sary for providing training to a group of parents, such as slide presentations and video examples. Most ECSE teachers are unlikely to adapt materials designed for use in a one-to-one training program to a group program because of the amount of time necessary to develop group presentation materials. A final obstacle to the provision of parent training is the lack of appropriate preparation for providers working with children with ASDs and their families. Most specialists—especially those who work with children ages 3 years and older—have been trained to work with children, not adults. In addition, they often are not trained to understand how adults learn or techniques for teaching parents specific skills (Mahoney et al., 1999). The lack of specific preparation acti- vities for early childhood special educators in parent training is evident in the lack of courses available in this area in preparation programs in special education. To
  • 151. illustrate this point, McCollum (1999) reported her own cursory inspection of a variety of EI/ECSE textbooks revealed that, although the topic of families received a significant amount of attention, the topic of parent education was con- spicuously absent. Thus, it is necessary to develop an effective teacher preparation protocol to encourage ECSE staff to provide parent- implemented intervention. To address these issues, Ingersoll and Dvortcsak (2006, in press) developed Project ImPACT (Improving Parents As Communication Teachers), a parent train- ing program designed specifically for use with children with ASDs and their families in ECSE classroom settings. The goal was to develop an evidence-based parent training curriculum using a format compatible with a classroom-based intervention model, including user-friendly materials, and incorporating an effec- tive teacher preparation protocol. PARENT TRAINING CURRICULUM The parent training curriculum focuses on teaching families naturalistic interven- tion techniques to increase their child’s social-communicative skills during daily activities and routines (Ingersoll & Dvortcsak, 2006). The specific intervention strategies have been drawn from a variety of evidence-based interventions shown to be effective for young children with ASDs and other
  • 152. developmental disorders. Parents are first taught strategies for setting up their home to ensure successful parent–child interactions. Subsequently, they are taught the interven- tion strategies (see Appendix 8.1). Project ImPACT is composed of developmental strategies to encourage parent responsiveness (e.g., Mahoney & Perales, 2003) and naturalistic behavioral strategies to teach specific social - communicative skills (e.g., Kaiser et al., 1992). Table 8.1 provides a description of the individual Whalen_Ch08.qxd 11/24/08 1:06 AM Page 8 Training Teachers to Provide Parent Training 9 Table 8.1. Intervention strategies Topic 1: Set up your home for success Parents are taught strategies for arranging their home to increase the likelihood of positive parent- child interactions, including having a well-defined play space, limiting distractions, rotating toys, and scheduling predictable play routines (Davis & Fox, 1999). Topic 2: Follow your child's lead In order to increase their child's motivation, parents are taught to follow their child's focus of attention and to provide teaching opportunities around the activities their child chooses.
  • 153. Parents are taught to provide a variety of highly motivating materials (e.g., toys, games, snacks), respond to their child's changing interests, and assist their child in his or her play. This technique is used in all naturalistic interventions and has been shown to increase parent responsiveness and child motivation (e.g., Kaiser et al., 1992). Topic 3: Imitate your child Parents are taught to imitate their child's vocalizati ons, actions with objects, and gestures. This strategy has been show to increase child responsiveness and coordinated joint attention and is used to increase social engagement (Klinger & Dawson, 1992) Topic 4: Animation Parents are taught to exaggerate their gestures, facial expressions, and vocal qualities in order to increase their child's interest and to model appropriate nonverbal communication (Mahoney & MacDonald, 2007). Topic 5: Modeling and expanding language Parents are taught to use a variety of indirect language stimulation techniques (e.g., descriptive talk, conversational recast) to talk about their child's focus of interest. These techniques have been shown to be effective at increasing the rate and complexity of children's language skills (e.g., Camarata, Nelson, & Camarata, 1994; Ingersoll, Dvortcsak, Whalen, & Sikora, 2005; Kaiser et al., 1996).
  • 154. Topic 6: Playful obstruction Parents are taught to gain their child's attention during an interaction by playfully interrupting their child's activity. This technique is used to increase initiations from the child (Greenspan, Wieder, & Simons, 1998). Topic 7: Balanced turns Parents are taught to use balanced turns with their child to increase their reciprocity and to provide opportunities for … · FEATURE ARTICLE Continuing Education Shaping Effective Communication Skills and Therapeutic Relationships at Work The Foundation of Collaboration by Susan M. Grover, PhD, MS, RN l1 e study of communication is a vital part of under- standing human behavior. Indeed, the concept of communication is an integral part of every profession, academic field, and of society as a whole. It is the basis upon which relationships are established. Despite the emphasis on effective communication, poor communication is often the cause of great misunderstanding and conflict.
  • 155. Occupational health nurses traditionally have been a part of collaborative interdisciplinary teams including the employer and employees (Wachs, 2005). This emphasis on interdisciplinary practice mandates an appreciation for and understanding of the importance of effective communica- tion. The focus of this article is on effective communication among occupational health professionals, employees, and employers. Therefore, the purpose of this article is to explore the key components necessary for effective communication and therapeutic relationships within the work environment. COMMUNICATION COMPONENTS What is communication and what are the major com- ponents? Historically, hundreds of definitions and a variety of paradigms have been developed. What has come to be accepted as a basic assumption by communication experts is that communication is a process with no beginning or end (Heath, 1992). As such, it is continually occurring and constantly changing because no two interactions are ever the same. Communication builds on previous interactions and prompts ongoing communication. Indeed, a commonly accepted maxim is that "people cannot not communicate nor can they uncommunicate" (Heath, 1992, p. 32). ABOUT THE AUTHOR Dr. Grover is Professor and Chair, Family Community Nursing, East Ten- nessee State University, Johnson City, TN. APRIL 2005, VOL. 53, NO.4 Early communication models viewed communication as a linear process. McQuail and Windahl (1981) discuss these models as a message going through a transmitter to a receiver. This model essentially explored who said what
  • 156. in which channel to whom and with what effect. Subse- quent models described communication as messages that are encoded and decoded to send a signal (McQuail & Windahl, 1981). The emphasis in these models was on the shared experience between encoder and decoder, as well as the importance of feedback. These concepts currently have become key ingredients in the development of inter- disciplinary interactions and communication. Human communication can best be described as a "two-way ongoing process by which a person or persons stimulates meaning in the mind of another person (or per- sons) through verbal and/or nonverbal messages" (Stone, Singletary, & Richmond, 1999, p. 53). This definition im- plies that there must be an exchange of ideas and an abil - ity to stimulate meaning for the recipient of the message. The sender must transmit the message effectively for the receiver to interpret or decode the message. Through in- terpersonal communication, individuals become aware of, and sensitive to, one another. If the receiver is un- able to receive, misinterprets, or does not respond to the message, communication is flawed (Stone et al., 1999). Indeed, many communication errors occur because the message is not heard accurately. With the number of in- terdisciplinary health care professionals who work on the occupational health team, a lack of common ground is often the direct result of differing patterns of communi- cation. Clear communication strategies that are mutually understandable are critical for optimal outcomes (Mil - ligan, Gilroy, Katz, Rodan, & Subramanian, 1999). 177 BASIC COMMUNICATION SKillS
  • 157. Numerous books and articles have been written about how to avoid flawed communication through the use of basic communication skills (Ellis, 1999; Ledds-Herwitz, 1992). These basic communication skills include: • Listening. • Asking open-ended questions. • Asking closed questions. • Clarifying. • Paraphrasing. • Using facilitators. • Assessing non-verbals. • Silence. Listening Part of being responsive to an individual in an inter- action is to listen. Listening requires attending to the other person. Attending skills include maintaining eye contact and attempting to decode or interpret the message. Too often, individuals are thinking of the next question to ask instead of focusing on the present interaction. Asking Open-Ended Questions Open-ended questions are key to an effective interview . These are questions that cannot be answered with "yes," "no," or a short phrase. Typically, open-ended questions are worded to gain a wide range of possible responses and infor - mation. In addition, these types of questions help employees feel that the occupational health nurse is listening. Examples of open-ended questions are "How did you feel about that?" and "What helped you deal with that in the past?" It is often difficult not to follow up an excellent open-ended question with a closed one, especially if there is a lapse of time be- fore a response. This can be related to provider concerns that