Facilitating factors and barriers to the implementation of intensive home-based behavioural intervention for young children with autism

© 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


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



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



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



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.

References

Corrigan, P.W. (1995) Wanted: champions of psychiatric

rehabilitation. American Psychologist, 50, 514–521.



Corrigan, P.W., Holmes, E.P. & Luchins, D. (1993)

Identifying staff advocated of behavioural treatment

interventions in state psychiatric hospitals. Journal of

Behaviour Therapy and Experimental Psychiatry, 24,

219–225.

Dey, I. (1993) Qualitative Data Analysis: a User-Friendly

Guide for Social Scientists. Routledge, London.

Emerson, E. & Emerson, C. (1987) Barriers to the effec-

tive implementation of habilitative behavioural pro-

grammes in an institutional setting. Mental

Retardation, 25, 101–106.

Factor, D.C., Perry, A. & Freeman, N. (1990) Stress, social

support, and respite care use in families with autistic

children. Journal of Autism and Developmental Disor-

ders, 20, 139–146.

Hastings, R.P. & Johnson, E. (2001) Stress in UK families

conducting intensive home-based behavioral inter-

vention for their young child with autism. Journal of

Autism and Developmental Disorders, 31, 327–336.

Hastings, R.P. & Remington, B. (1993) ‘Is there anything

on … Why “good” behavioural programmes fail?’.

Clinical Psychology Forum, 55, 9–11.

Lovaas, O.I. (1987) Behavioural treatment and normal

educational and intellectual functioning in young

autistic children. Journal of Consulting and Clinical

Psychology, 55, 3–9.

McEachin, J.J., Smith, T. & Lovaas, O.I. (1993) Long-term

outcome for children with autism who received early

intensive behavioural treatment. American Journal on

Mental Retardation, 97, 359–372.

Documents

Facilitating factors and barriers to the implementation of intensive home-based behavioural intervention for young children with autism