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© 2002 Blackwell Science Ltd 123
Facilitating factors and barriers to theimplementation of intensive home-basedbehavioural intervention for youngchildren with autism
Emma Johnson and Richard P. Hastings
Centre for Behavioural Research Analysis and Intervention in Developmental Disabilities, Department ofPsychology, University of Southampton, Southampton, UK
Accepted for publication 10 October 2001
AbstractB a c kg ro u n d Although international interest in intensive home-based early behavioural
intervention for children with autism is increasing, there is little or no published research on the
experiences of families conducting these programmes.
M e t h od s One hundred and forty-one UK parents conducting Lovaas-style interventions with their
young child with autism were asked to identify factors that acted as facilitative factors and barriers to
the implementation of these programmes. Parents responded to written questions contained within
a questionnaire survey, and their responses were subjected to a content analysis procedure.
R e s u l t s Several of the facilitative factors and barriers were found to be similar. For example, a
supportive therapy team was the most frequently cited facilitative factor, and problems recruiting
and maintaining a suitable team was the most frequently reported barrier. Other factors seemed to
be more independent constructs. For example, an important barrier was the lack of time and personal
energy, but plenty of time and energy was not cited as a facilitative factor.
C o n c l u s i o n s The practical implications of these results for families and for services supporting
families engaged in intensive early behavioural intervention are discussed. In addition, more general
implications for the designers of behavioural intervention programmes are identified.
Correspondence:Richard Hastings,Department of Psychology,University of Southampton,Highfield, SouthamptonSO17 1BJ, UKE-mail: [email protected]
Original Article
Keywordsautism, applied behaviouranalysis, early intervention,family experiences,behavioural intervention
Introduction
Since the reports of data supporting the use of
intensive home-based behavioural intervention for
young children with autism published by Lovaas
(1987) and McEachin et al. (1993), parents outside
the US have been establishing ‘Lovaas programmes’
for their young children with autism. The UK has
been no exception, and the implementation of these
programmes has been gathering pace throughout
the 1990s.
UK parents established their own support group
in 1996 (PEACh – Parents for the Early intervention
of Autism in Children). This group has been instru-
mental in supporting parents who have taken the
education authorities to court in order to gain
finance for their child’s programme. By summer
1999 (the time of the present research), approxi-
mately 250 Lovaas-style programmes had been
established for children with autism in the UK. Of
these, 109 had been involved in a court case with the
families’ local education authority. In 100 of these
124 E. Johnson and R.P. Hastings
© 2002 Blackwell Science Ltd, C h i l d : C a re , H e a l t h & De v e l o p m e n t, 28, 2, 123–129
cases, the courts had required that the educa-
tion authorities provide funds for the child’s
programme.
Against this background, the present research
focused on the experiences of families in the UK
who are engaged in Lovaas-style programmes with
their young children with autism (Hastings &
Johnson 2001). One part of this research was to
gather parents’ views on the factors that have facili-
tated their child’s programme and the barriers that
have prevented its smooth implementation.
Although there are a number of informal informa-
tion sources designed for parents, especially on the
Internet, extensive literature searches revealed no
research that has focused on barriers or facilitating
factors for intensive home-based behavioural inter-
vention for young children with autism. Thus, in
addition to identifying the experiences of UK par-
ents, the present research is informative for profes-
sionals and researchers working with parents
involved in intensive intervention with their child
with autism in other countries.
There is a general research literature on barriers
to the implementation of applied behaviour
analysis intervention programmes in various
clinical and educational contexts. Hastings &
Remington (1993) argued that barriers to behav-
ioural intervention fell into four main categories.
This categorization was based on two types of liter-
ature: behavioural analysts writing about their
experiences of barriers to intervention and a small
number of empirical studies. The four types of bar-
riers identified were:
1 Aspects of services and institutions (e.g. lack of
resources, rules and regulations, lack of commu-
nication between staff groups).
2 The nature of the programmes themselves (e.g.
slow changes in behaviour, perceived inflexibility
and technical language, most programmes con-
ducted by people other than the programme
designer).
3 Staff factors (e.g. lack of behavioural knowledge
and skill, philosophical objections).
4 External factors (e.g. family interference, social
and legal restrictions).
Empirical studies have typically surveyed groups
of staff who carry out programmes as part of their
work. For example, Emerson & Emerson (1987)
focused on a medium-sized North American insti-
tution for people with mental retardation or psychi-
atric disabilities. A self-administered questionnaire,
which included open-ended questions concerning
perceived barriers to effective programming, was
distributed to direct care staff members. Emerson &
Emerson (1987) suggested that factors leading to
the lack of consistency in carrying out programmes
included: human resources (e.g. shortage of staff –
the barrier identified by the largest number of staff;
lack of knowledge of behavioural methods);
environmental factors (e.g. ward overcrowding,
the absence of appropriate rewards to consequate
behaviour effectively); competing contingencies
operating on resident behaviour (i.e. not being able
to control all aspects of a resident’s life); and a lack
of professional support.
This research has typically not focused explicitly
on factors that facilitate behavioural intervention.
An exception is the notion that barriers may be
overcome through the identification of ‘champions’
of habilitative interventions who are able to enthuse
other staff (Corrigan 1995). When staff themselves
are asked to identify potential advocates for behav-
ioural intervention, they select individuals who
have: higher levels of behavioural knowledge; tend
to have more professional qualifications; and per-
ceive fewer barriers to the implementation of pro-
grammes (Corrigan et al. 1993).
Although the objections of parents and families
have often been identified as barriers to the imple-
mentation of applied behaviour analysis inter-
vention programmes with their child or adult
offspring, there has been little or no direct research
on parents’ views of barriers. This is in addition to
the general paucity of empirical work in this field,
the absence of data on facilitative factors and the
particular absence of research on barriers or facili-
tative factors for intensive behavioural intervention
for autism. Given this context, the present study will
provide useful data for both researchers and profes-
sionals working with families of young children
with autism and others interested in behavioural
intervention more generally.
One note of caution in terms of the generalizabil-
ity of the findings of this research is the particular
UK situation. As with many countries outside the
Facilitators and barriers to intervention with autism 125
© 2002 Blackwell Science Ltd, C h i l d : C a re , H e a l t h & De v e l o p m e n t, 28, 2, 123–129
US, there is a shortage of suitably qualified consul-
tants and other support staff able to supervise
Lovaas-style programmes, and a lack of opportuni-
ties and expertise in training for those tutors and
parents who constitute the child’s daily therapy
team. Some of these difficulties may well be specific
to the UK, but other barriers and facilitating factors
identified by parents will be relevant to other coun-
tries beginning an involvement in intensive behav-
ioural intervention for children with autism.
Methods
Participants
Participants in this research were 141 members of
PEACh who responded to a questionnaire mailed to
their home address using the PEACh database. The
parent who was primarily responsible for the care of
the child with autism was asked to complete the
questionnaire. One hundred and thirty respon-
dents were female, and 11 were male. The age of
respondents ranged from 26 to 53 years, with a
mean of 37.4 years. One hundred and twenty-nine
(91.5%) of the respondents were married and living
with their spouse, six (4.3%) were living with a part-
ner, and six (4.3%) were divorced, separated or
single and not living with a partner. Further
demographic details of respondents, their young
child with autism and their family can be found in
Table 1.
The data in Table 1 indicate that the responding
sample was highly educated and mostly in families
where both parents worked. These characteristics
are likely to be typical of PEACh membership at the
time of the research: families most often had to
finance their child’s programme at least for the first
year before receiving funding from educational
agencies if at all. However, the responding sample
was in no way representative of families of children
with autism in the UK.
Survey instrument
The first part of the questionnaire asked about a
number of demographic and programme details
(see above and Table 1). The second part of the
questionnaire was concerned with the barriers and
facilitating factors to the implementation of the
intensive behavioural early intervention pro-
grammes for children with autism. In this section,
participants were asked:
1 To list the three most significant barriers, from
their own experience, to carrying out their child’s
programme.
2 To list the three factors, again from their own
experience, that were most helpful in facilitating
the implementation of the programme.
Procedure
Four hundred and fifty questionnaires were mailed
out through PEACh to their parent members.
Questionnaires were returned to the research team
anonymously. One hundred and forty-one mem-
bers replied, constituting a response rate of 31%.
This response rate is at the low end of the typical
range for a postal survey of this sort. However, there
were two factors in particular that will have acted to
reduce the response rate. First, PEACh includes par-
ent members who do not have a child with autism
but have other disabilities. The questionnaire
explicitly asked about children with autism, and
Table 1. Further demographic characteristics of the sample
Characteristic Percentage ofsample/mean
Respondent has bachelor’s, 45.4%master’s or doctoral degree
Respondent in full- or 97.2%part-time employment
Respondent’s partner in 94.4%employment
Respondent acting as therapist 66.7%on child’s programme
Respondent’s partner acting as 27.0%therapist on child’s programme
Gender of child with autismMale 89.4%Female 9.9%
Child with autism lives with respondent 98.6%
Age of child with autism (years) 5.01
Length of time on programme (months) 13.47
Number of other siblings in family 1.21
126 E. Johnson and R.P. Hastings
© 2002 Blackwell Science Ltd, C h i l d : C a re , H e a l t h & De v e l o p m e n t, 28, 2, 123–129
these other parents would have been unlikely to
respond. There are no data relating to how many
families would have been in this position. Secondly,
not all members of PEACh were parents of a child
currently engaged in an early intervention pro-
gramme. The PEACh data at the time of the study
suggested that 250 families were conducting
Lovaas-style programmes in the UK. If we assume
that this figure is reasonably accurate, the true
response rate for the study is closer to 60%. There
are no data available about non-responding fami-
lies as the survey was returned anonymously.
Data reduction and reliability
The first author subjected participants’ responses to
the second part of the questionnaire (barriers and
facilitating factors) to a basic content analysis pro-
cedure. The basic steps of content analysis (Dey
1993) are: (a) to divide the data into manageable
parts; (b) to collect responses together that relate to
the areas or questions of interest; (c) to create cat-
egories that describe similar responses within these
general groupings; and (d) to combine or split
categories where data can best be described in a
rearranged structure. A further step should estab-
lish the reliability of the coding system developed
using a second coder.
Twenty-eight of the questionnaires were coded
by a second person to obtain a measure of inter-
rater reliability. The extent of agreement between
the two coders was calculated using a simple per-
centage agreement index formula {[agreements/
(agreements + disagreements)] ¥ 100%}. An agree-
ment was defined as when both raters coded a given
answer into the same category. Overall agreement
for the barrier categories was 81%, and there was an
agreement of 88% for the facilitating factors.
Results and discussion
The category labels, descriptions of categories and
the percentage of the sample that listed the factors
described are shown in Tables 2 and 3.
In general, the facilitating factors and barriers to
the implementation of intensive early behavioural
intervention for children with autism identified by
parents were opposite poles of the same construct.
For example, the most frequently mentioned facili-
tating factor was the support and commitment of
the team of people involved in the programme. The
most frequently reported barrier to implementa-
Table 2. Barriers to the implementation of intensive behavioural intervention for autism
Barrier category Description of barrier Percentage of participants
Developing and/or Problems with recruiting and training staff, shortage of staff, 70.9maintaining team lack of appropriate training for staff
Programme funding Concerns over obtaining funding from education departments, 68.1financial costs of the programme, other financial and fund-raisingconcerns
Personal/family Time and energy, family constraints (e.g. other children), 42.6resource constraints includes time needed for organizing the programme
Problems with Problems with and negative attitude of the authorities, 17.7education authorities taking education authorities to court
Negative impact on Practical difficulties such as disruption to family life, 13.5families invasion of the home
Lack of support from Including lack of support for Lovaas methods in the school, 9.2schools or professionals teachers lacking interest
Concerns with schools Includes inflexibility of school routines, disruptions 5.7in school vacation periods, and finding the correctbalance between school and the programme
Child concerns Child problems such as illness, tiredness and lack of concentration 5.7
Lack of physical resources Includes lack of equipment and lack of space in the home 5.0
Facilitators and barriers to intervention with autism 127
© 2002 Blackwell Science Ltd, C h i l d : C a re , H e a l t h & De v e l o p m e n t, 28, 2, 123–129
tion of the programmes constituted difficulties in
recruiting and maintaining a suitable team.
Although this was a general pattern, there was
also evidence to suggest that some facilitating
factors and barriers to intervention were more
independent.
In the case of barriers to implementation, two in
particular did not appear to have a direct compara-
tive facilitative factor. These were personal and
family resource constraints and problems in dealing
with education authorities. Problems with a lack of
time and energy were perceived as barriers to inter-
vention, but it is unlikely that these families would
ever say that they have a surplus of these resources
to facilitate the programmes. Families of children
with autism have been found to be under significant
strain in previous research (e.g. Factor et al. 1990).
At present, it appears that education authorities
may well impede parents who want to use early
intervention with their child, but they are not per-
ceived as helping very much even though parents
also identified financial support as a facilitative
factor.
In the case of facilitating factors, parents listed
two that did not seem to have a counterpart barrier.
These were: (a) support from family, friends, other
families using Lovaas-style interventions and the
support generally of the UK parents’group for these
families; and (b) the progress of the child and the
child’s response to the programme. This shows the
value of considering facilitating factors in addition
to barriers and suggests mechanisms by which par-
ents may be supported (see below).
Several of the barriers to implementation of
behavioural programmes identified in the present
study were similar to those found in previous
research (e.g. knowledge of staff, lack of physical
resources, disruptions caused by interventions).
However, there were factors that appear to be more
programme specific. In particular, families per-
ceived schools, education authorities and financial
resources as significant barriers to the implementa-
tion of behavioural intervention for their young
child with autism.
The most frequently reported barrier, and the top
facilitating factor, related to the programme team.
Parents clearly find the team-based approach to
Lovaas-style intervention for children with autism
highly supportive. However, especially in a country
relatively new to such programmes, recruiting and
maintaining a suitable team is difficult. Although
there are plenty of inexperienced tutors willing to
Table 3. Factors facilitating the implementation of intensive behavioural intervention for autism
Facilitating factor Description of facilitating factor Percentage of participants
Supportive and committed team ‘Good’, supportive or committed team members; a stable, 75.9complete team; team meetings
Financial resources Having funding from the education authority, funds raised 31.2through other sources, having the finances to support aprogramme
Child progress Visible progress of the child on the programme, and child 26.2characteristics such as being happy and compliant
Support of family and friends Supportive immediate and extended family and friends 21.3
Support of other ‘Lovaas’ families Support from families conducting similar programmes 14.9
Positive benefits for family Giving a feeling of direction to parents, positive feelings 12.8about the programme, opportunity for more free time aschild is engaged in programme
Support of PEACh Support provided/from the UK parent group 9.9
Availability of physical resources Having enough space to conduct the programme (large 8.5house or room)
Support of school Support or help from the child’s school and/or teacher 7.1
Flexible work arrangements Having control over paid work hours, being able to take 4.3time off or work from home
128 E. Johnson and R.P. Hastings
© 2002 Blackwell Science Ltd, C h i l d : C a re , H e a l t h & De v e l o p m e n t, 28, 2, 123–129
participate in these programmes, there is a paucity
of supervisory and consultant-level staff with
applied behavioural analysis expertise in the UK. As
the number of families interested in implementing
behavioural programmes rises rapidly, this problem
is compounded and experienced staff are at a pre-
mium. Furthermore, there is a danger that poorly
trained staff will be used as no other staff are avail-
able. This will tend to reduce the efficacy of any
intervention and could result in heavy financial and
psychological losses for families.
The second most frequently reported barrier and
facilitating factor was that of financial resources.
Intensive early intervention programmes have a
high financial cost in the short term. There are
potentially significant longer term financial savings
for public services if even a small proportion of the
claimed benefits of behavioural intervention for
autism are achieved. However, families and services
are presently faced with high costs. This issue is not
easily dealt with, but probably the most important
point is that families taking up these programmes
may be under significant financial strain, and this
may be a risk for psychological problems about
which supporting agencies should be aware.
Linked with the previous point, frequently men-
tioned facilitative factors related to support pro-
vided by family, friends and other parents involved
in Lovaas-style programmes. Strikingly, families
did not identify professional support as an im-
portant facilitative factor (although schools and
school-related organizations were reported as bar-
riers). This may be for several reasons: the lack
of suitably experienced or qualified persons (see
above); the general negative relationships between
services and families resulting from court battles
over funding; and the fact that services have not yet
identified these families’ needs and methods for
supporting them.
The final point may be particularly crucial in a
country where early intervention programmes are
beginning to be established. When the take-up of
new intervention is essentially parent driven, there
will be an inevitable delay while services obtain
information about the interventions and view ini-
tial outcome data or conduct their own research to
establish evidence for the efficacy of the approach.
In the case of the present sample, a complicating
factor is that many children, most of whom are
preschool, either are or will very soon be entering
the education system for the first time. This is likely
to create new tensions as parents aim to ensure a
smooth transition into school for their child, and
schools attempt to accommodate children requir-
ing ongoing intensive input.
In terms of the final commonly reported facilita-
tive factor, parents were positive about the impact of
the child’s progress on the smooth running of pro-
grammes. Conversely, they very rarely suggested
(i.e. less than 6% of respondents) that any factor
related to the children themselves was a barrier to
the implementation of the programmes. Data col-
lection and feedback on performance are core
features of Lovaas-style interventions. However,
hard-pressed programme staff may neglect this
aspect. The present data suggest that such feedback
may be a very important factor in motivating those
involved with a young child with autism.
Clearly, the present data relate to the current con-
text of early intervention for autism in the UK.
Thus, if applied behavioural analysis interventions
become more widely available, several of the bar-
riers identified here would probably become less
significant. Furthermore, the present sample (see
above) was likely to be from highly motivated and
resourceful families. Less resourceful families at
present are unlikely to access behavioural interven-
tion for their young child with autism. Should more
efficacy data become available, the challenge for
practitioners will be to establish inclusive services
based on clinical need rather than on family psy-
chological and financial resources.
Acknowledgements
The authors would like to thank PEACh UK for
their help in distributing questionnaires for this
research, and the parents who participated in the
research. The views represented in this paper are
those of the authors and not PEACh UK.
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