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European Journal of Special Needs

Education
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Multi‐sensory storytelling as an aid

to assisting people with profound
intellectual disabilities to cope with
sensitive issues: a multiple research
methods analysis of engagement and
outcomes
a a a
Hannah Young , Maggi Fenwick , Loretto Lambe & James Hogg
b

a
PAMIS, University of Dundee, Dundee, UK
b
White Top Research Unit, University of Dundee, Dundee,
Scotland, UK
Version of record first published: 12 May 2011.

To cite this article: Hannah Young , Maggi Fenwick , Loretto Lambe & James Hogg (2011):
Multi‐sensory storytelling as an aid to assisting people with profound intellectual disabilities to
cope with sensitive issues: a multiple research methods analysis of engagement and outcomes,
European Journal of Special Needs Education, 26:2, 127-142

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 European Journal of Special Needs Education
Vol. 26, No. 2, May 2011, 127–142

Multi-sensory storytelling as an aid to assisting people with

profound intellectual disabilities to cope with sensitive issues: a
multiple research methods analysis of engagement and outcomes
Hannah Younga*, Maggi Fenwicka, Loretto Lambea and James Hoggb
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aPAMIS,
University of Dundee, Dundee, UK; bWhite Top Research Unit, University of
Dundee, Dundee, Scotland, UK
(Received 6 April 2010; final version received 4 December 2010)
Taylor and Francis
REJS_A_563603.sgm

European
10.1080/08856257.2011.563603
0885-6257
Taylor
2011
20Article
26
h.young@dundee.ac.uk
HannahYoung
00000May
& Francis
Journal
(print)/1469-591X
2011 of Special Needs
(online)
Education

The importance of storytelling in social, cultural and educational contexts is well

established and documented. The extension of storytelling to people with
profound intellectual and multiple disabilities (PIMD) has in recent years been
undertaken with an emphasis on the value of sensory experience and the context
storytelling provides for social interaction. The present study builds on earlier
curriculum orientated research with a view to describe patterns of social and story-
oriented interaction during storytelling. The stories dealt with sensitive topics
raised by family carers who wished the young person with PIMD to understand.
Behavioural observation during storytelling sessions explored changes in
engagement while semi-structured interviews with parents and professionals
explored the extent to which the experience had benefitted the young person with
respect to the sensitive topic. Positive changes in engagement with the story were
shown for seven of the eight participants. For six of the seven, a parent and a
professional agreed that the outcome of the experience positively enabled the
participant to cope better with the sensitive topic. The specific multi-sensory
storytelling factors leading to these outcomes are discussed, as is the issue of
proxy reporting and determining the nature of understanding in people with
PIMD.
Keywords: profound intellectual and disability; multi-sensory storytelling;
behavioural observation; family carers; difficult behaviours

The importance of storytelling as a means to transfer knowledge, entertain and provide

a social context in which people can come together and share a common activity is
familiar in many cultures (Grove and Park 2001). In the United Kingdom, storytelling
has been extended to being used in promoting educational attainment and the social
and emotional development of children in mainstream schools (Office for Standards
in Education [Ofsted] 1998; Fox-Eades 2006). Storytelling has also been promoted as
a means of facilitating contingent and reciprocal parent-child interactions (Hughes
2004). Such initiatives have been encouraged by research demonstrating the impor-
tance of such interactions for the healthy development of children (Schore 1994). The
United Kingdom’s National Literacy Trust, for example, has campaigned for more
parents to read stories to their children in an effort to facilitate their social, emotional
and cognitive development (National Literacy Trust 2007).

*Corresponding author. Email: h.young@dundee.co.uk

ISSN 0885-6257 print/ISSN 1469-591X online

© 2011 Taylor & Francis
DOI: 10.1080/08856257.2011.563603
http://www.informaworld.com
 128 H. Young et al.

In recent years, the potential of storytelling to enhance the lives of people with
profound intellectual and multiple disabilities (PIMD) has been explored. This activity
has been undertaken with an emphasis on the sensory experiences made available
during storytelling, as well as the provision of a context in which social interaction can
emerge. The value of sensory experiences for people with PIMD has an extensive
history with respect to both educational and leisure interventions with this group.
Specific examples include the creation of multi-sensory environments (Hulsegge and
Verheul 1987; Pagliano 1999), basal stimulation (Frölich 1998), sensory curriculums
(Longhorn 1988) and Intensive Interaction (Hewett and Nind 1998; Nind 1996). All
these approaches not only draw on sensory experience and input, but also have a strong
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component of social interaction in their implementation. Multi-sensory storytelling

then has been developed within a framework of sensory-based and socially interactive
approaches. The overarching context for both types of experiences is the narrative
conveyed by the story, the starting point for the innovative work undertaken by Fuller
(1990, 1999) and developed within a wider framework by Grove (2005, 2009).
Multi-sensory storytelling may be employed to facilitate understanding and behav-
iour in people with PIMD, as was demonstrated in an earlier educationally orientated
study by Watson, Lambe and Hogg (2002). Here personalised, specific learning targets
were achieved by young people with PIMD with respect to a wide range of cognitive,
social and motor curriculum objectives. The documentation of these achievements was
undertaken within a framework of behavioural observation carried out using computer
analysis of videotaped storytelling sessions. The response to these outcomes by
parents and teachers was extremely positive and led to the suggestion that the approach
might be employed to enable carers and professionals to assist people with PIMD to
understand and cope with a range of difficult situations and experiences. Among these
were issues of sexual development, medical interventions and transitions (Fenwick
2005, 2007). Parents reported that they had no means of dealing with these issues and
anticipated that storytelling had the potential to provide a medium through which these
sensitive issues could be presented to the young person.
Several aspects of multi-sensory storytelling suggest that the approach would lend
itself to achieving this aim:

(1) the activity of storytelling provides a context in which the adult and young
person may jointly focus on aspects of the difficult topic;
(2) stories may be personalised to focus on the specific topic identified by the
carer or professional as creating difficulties for the young person and linked to
the real life situation;
(3) aspects of the topic may be presented though a sensory medium tailored to the
individual’s sensory capacities;
(4) key aspects of the topic may be integrated into a single narrative in which
some resolution or accommodation to the difficulty may be presented;
(5) through repeated readings of the story, repetition would increase the opportu-
nity for the young person to understand the narrative and how it related to his
or her own experiences;
(6) the activity of storytelling is inherently enjoyable for the young person, ensur-
ing that motivation to engage in the activity would be highly probable.

The present research, then, was developed in collaboration with family carers
and professionals – mainly teachers – to investigate the potential of multi-sensory
 European Journal of Special Needs Education 129

storytelling to enable young people with PIMD to cope with sensitive issues in their
lives.
In order to achieve this aim, two sources of information were required. First, was
there evidence that the young person engaged with the medium through which the
story was told, i.e., the multi-sensory book? And how did engagement progress
throughout repeated readings of the story? This analysis was undertaken to document
the collaborative aspect of storytelling through a consideration of focussed attention.
This demonstration was important, as engagement must occur if the intended impact
of the story on the sensitive issue is to be realised. Second, the impact of the story on
the real life situation represented was explored through semi-structured interviews
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with parent carers and professionals supporting the person to establish whether expe-
rience of the multi-sensory story did enable the young person to cope better with the
difficult situation.
The analysis of engagement drew on research into the parent-child interaction
literature that considered behavioural measures of eye gaze (Trevarthen 1977) and
patterns of looking at another person (Stern 1985) as strong indicators of changes in
social engagement. Engagement with the story was measured by behavioural analysis
of looking behaviours together with motor interaction with story objects, i.e., touching
the objects on the page. Where the person with PIMD was visually impaired, head
orientation was used as an indicator of directed attention.
Given the individuality of the participants, multiple single-subject assessments
were made. The rationale for this approach was supported by the fact that storytelling
may have had different outcomes for each individual given the variations in their
cognitive, sensory and social capacities, as well as the distinctively different content
of the personalised stories. Although it is not possible to determine directly the precise
cognitive outcome derived from videoed observations, the judgements of parents and
professionals based on their subsequent experience of the young person following
storytelling provided information on its impact. By triangulating the behavioural
observational data and such reports, inferences regarding the effectiveness of multi-
sensory storytelling will be made.

Method
Context
This study was undertaken by PAMIS, a third sector organisation and unit based at the
University of Dundee, Scotland, working collaboratively with the White Top
Research Unit, a specialist intellectual disability centre. PAMIS undertakes research
into PIMD through a range of national projects as well as providing an extensive
family support service across Scotland.

Participants
Eight young individuals with PIMD (ages 4–19 years; five males and three females)
from across Scotland participated. All participants met the criteria for PIMD stated in
Hogg, Juhlberg and Lambe (2001) and fell within the core group defined by Nakken
and Vlaskamp (2002). The definition provided in the former paper is based on criteria
related to limited communicative abilities and additional significant physical and/or
sensory impairments. In the present study all individuals had limited communication
 130 H. Young et al.

Table 1. Participants and their multi-sensory stories.

Participant and Story Age Aim of Story Visual Status Storyteller
‘Brian has seizures’ 18 Reduce fear of seizures Good peripheral Mother
vision, can see
close objects
‘Claire is growing 12 Prepare for adolescence Registered blind Teacher
up’ and increase touch
tolerance
‘Fraser is growing 14 Develop understanding Good peripheral Mother
up’ of puberty and vision
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masturbation
‘Joseph’s dentist 11 Reduce anxiety around Good vision Teacher
visit’ the instruments used at
dentist
‘Martin’s wee turn’ 4 Reduce fear of seizures Visual impairment, Mother
wears glasses
‘Rebecca’s toilet- 17 Use toilet in absence of Good vision Occupational
time’ adult therapist
‘Sarah has her 19 Develop understanding Registered blind, can Mother
periods’ of period pain see light
‘William’s bath 5 Develop turn-taking Visual impairment, Mother
time’ wears glasses

skills, were non-verbal and had physical disabilities, though they had the motor abil-
ity to come into contact with the story objects, sometimes with support. Summary
information on the participants is presented in Table 1. All names have been
anonymised.
Storytelling was undertaken consistently by either the mother or a professional
who was also familiar with the young person. Details of the stories and storytellers are
also presented in Table 1. Consent for the young person to participate in the project
was given by parents, many of whom were their welfare guardians under the Adults
with Incapacity (Scotland) Act (2000).

Development of the sensitive stories

Each story was developed through collaboration between the parent, the teacher (or
other professional), and the PAMIS sensitive stories project officer. For some stories,
a specialist in the particular topic was involved, e.g., a community dentist advised on
Joseph’s visit to the dentist, while a learning disability epilepsy nurse advised on the
two stories on epilepsy, and a community nurse who specialised in sexual health gave
advice regarding the story on masturbation. The sensitive topic for each individual
was agreed by the development team noted above; they also discussed and agreed
each draft of the storyline and considered the sensory stimuli to be used. There were
many drafts of the story lines over a number of months and some testing out of stimuli
to find the most suitable approach for the individual. For example, if a switch was to
be used, which one would be easiest for the young person to operate? Extraneous
factors such as family illness or crises prolonged this phase of the study in some cases.
Once each story was agreed, the multi-sensory story was created, a reading schedule
drawn up and dates set for the three video sessions.
 European Journal of Special Needs Education 131

Materials
The stories were made available in a cardboard box, referred to as the ‘book cover’,
in which objects were attached to size A3 pages. All stories involved multiple sensory
modalities reflecting the sensory capacities of each individual. The stories included an
average of eight sentences (one sentence per page) typed on a separate page to which
the storyteller referred. The storyteller was given the opportunity to rehearse the
telling of the story and its presentation prior to the first telling of the story with a non-
participant in the study.

Behavioural observation and recording

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Observations took place in the individual’s school, nursery, or in one case, home.
Each story was read (by the same storyteller) a minimum of eight times and video-
recorded during reading one (session 1), mid-reading (session 4) and final reading
(session 8). The average duration of each recorded session was six minutes. Each page
was accompanied by a sentence read to the participant. Some sentences required
specific responses, e.g., touching or exploring the object.

Interviews
Parents and professionals were interviewed using semi-structured interviews at the
end of the project, with respondents’ answers recorded by the interviewer. Questions
dealt with their experience of the use of multi-sensory storytelling, how effective this
had been in enabling their son or daughter to cope with the sensitive issue, i.e.,
whether the intended outcome had been achieved. Their responses during the telling
of the story were also explored.

Results
Analysis
Behavioural coding
The video recordings were coded by the project officer using the Observer® Video-
Pro software program, which permits computerised analysis and graphing of the
coded behaviours (Noldus et al. 2000). This analysis provided data on the total dura-
tion of engagement during a session and enabled changes across sessions to be plotted.
Behaviours fell into two overarching categories:

Engagement with story. Three main behaviours were taken as indicative of engage-
ment with the story defined as interaction with or attention toward the story page.
Look at page was operationally defined as visual attention toward the page or the
object of the story page.
Head orientation to page was defined as the head directed towards the page or the
object of the page. This behaviour was coded when an individual did not have the
capacity for sight.
Touches object was defined as the period of solitary physical contact with the page
or object, whether facilitated or not.
Social engagement. Behaviours involving interaction between the participant and the
storyteller were identified as social engagement. There were three main behaviours in
this category.
 132 H. Young et al.

Looks at storyteller was defined as visual attention towards the storyteller within
close proximity to the storyteller’s face.
Eye gaze was defined as the mutual eye contact between the storyteller and partic-
ipant, lasting more than one second.
Head orientation to storyteller was coded when an individual was visually
impaired and was operationally defined as the head directed towards the storyteller.

In order to estimate reliability of the behaviours coded, intra-class correlation coef-

ficients were carried out (Field 2005). Twenty percent of the videos and 20% of the
behaviours already coded were also coded by an independent observer. Criteria for
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selecting behaviours and videos to be recoded ensured each category of behaviour was
represented (e.g., ‘looks at page’ represented the category of ‘looking behaviours’). A
one-way model of absolute agreement revealed highly significant intra-class correla-
tions (range=.79–.99).

Interview data
Qualitative interview data were coded using thematic analysis (Miles and Huberman
1994). This method involved collating eight parents’ and eight professionals’
comments from interviews while relating them to common themes identified through
systematic reading. Such themes included engagement with the story, social engage-
ment and outcome, i.e., did the experience of multi-sensory storytelling lead to better
coping with the sensitive issue identified by the parent?

Findings
There are two distinct aspects to the analysis of the behavioural data. First, trends in
engagement will be explored across the three video-recorded sessions of storytelling.
Second, interview data will be considered using a case-by-case analysis and related to
the behavioural data permitting triangulation of the two sets of data.

Behavioural data
Figure 1 presents for each participant the total duration of engagement behaviour
across the three video-recorded sessions. In six of the eight cases, duration of looking
at the page or head orientation to the page increased from session 1 to session 3 (Brian,
Sarah, Fraser, Joseph, Rebecca, William), though this is only a consistent trend for
Brian and Sarah. It is important to note that the scales on the ordinate vary and in abso-
lute terms the increase varies considerably. For example, for Brian, duration increased
by 81 seconds while for Sarah the increase was 46 seconds. The relative change,
however, was greater for Sarah than Brian, 289% vs. 92% respectively. Joseph,
Rebecca and William all showed an increase in touching the objects between sessions
1 and 3, further evidence of engagement with the story. Martin demonstrated a
decrease in touching from session 1 to session 3.
Of the six who had shown increases in looking at the page or head orientation,
Figure 1. Duration of participants’ engagement with the multi-sensory story and social engagement in sessions 1, 4 and 8

three (Brian, Sarah and Joseph) showed a concomitant reduction in looking at the
storyteller. Martin, however, showed a reduction on all measurements including look-
ing at storyteller and eye gaze. In Claire’s case, head orientation to the page remained
relatively consistent overall at approximately 45 seconds while showing an overall
 European Journal of Special Needs Education 133

increase in touching objects. Claire’s head orientation to the storyteller also increased,
from 10 to 50 seconds. In addition, duration of looking at storyteller and eye gaze
increased in Fraser’s case while Rebecca’s attention to the storyteller in session 3
reverted almost to the session 1 level and her duration in eye gaze consistently
increased to the level of looking at the storyteller.
Given the diversity of the participants and the nature of the stories, it is unsurpris-
ing that differing patterns of engagement were found, clearly indicating the justifica-
tion for multiple single-subject designs in such studies. However, engagement with the
story pages, as indicated by looking at or head orientation to the page, has been clearly
demonstrated for six participants, while in a seventh, Claire, there was an increase in
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touching the page. There was an association between engagement with the story and
decreased visual engagement with the storyteller, suggesting a shift in relative atten-
tion in the overall context of the storytelling session. Only in the case of Martin was
there no indication of increased engagement either with the pages or the storyteller.
However, ill-health during the course of the study could have contributed to his lack
of interest and accounts for his pattern overall on all measures of disengagement.

Interview data
Brian: engagement with the story. The responses from both Brian’s mother and
teacher were consistent with the behavioural analysis that showed an increase in
behaviours associated with story engagement:

I did not expect him to show such appropriate responses to, for example, seeing the rectal
diazepam being administered. At this point, he becomes quiet. He developed this
response over the period of the project. (Brian’s mother)

He is very engrossed. He is still responding and his responses have become ‘stronger’
during the term of the project. (Brian’s teacher)

Social engagement. The interview schedule did not address the issue of social engage-
ment specifically, and Brian’s mother and teacher did not provide any spontaneous
comments on this, perhaps because their main focus was on Brian’s engagement with
the activity of storytelling itself.

Outcome. With regard to Brian’s understanding of the sensitive issue of epilepsy, his
mother and teacher clearly stated that they believe he gained understanding regarding
treatment and they provide observations of where he demonstrated this understanding:

He appeared to develop the cognitive understanding of the content of the story. He also
appeared to learn the story and anticipate the pages. (Brian’s mother)

Yes, he is understanding. From the video-viewing, this is evident in his anticipation and
responses. There are also certain parts of the story [where] he pays close attention to the
stimuli. (Brian’s teacher)

Claire: engagement with the story. Mother’s and teacher’s responses in Claire’s case
concurred strongly with the behavioural analysis that showed increased engagement
with the story across sessions. Mother’s and teacher’s response here also enrich the
 134 H. Young et al.
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Figure 1. Duration of participants’ engagement with the multi-sensory story and social
engagement in sessions 1, 4 and 8.
 European Journal of Special Needs Education 135
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Figure 1. (Continued).

data by reflecting on observations not made through the behavioural analysis, for
example with regards to excitement and enjoyment:

She anticipated her story and the stimuli. She became much more animated and vocal,
excited and increased enjoyment. (Claire’s mother)

She is always listening carefully when the story is being read to her…. She anticipated
the storyline. She was very responsive (e.g., became excited, very animated and lots of
smiles). (Claire’s teacher)

Social engagement. The interview responses draw attention to engagement with the
story, a trend reflected in the behavioural data though the peak increase had taken
place by session 4 (recording 2). The trend in social engagement was clearly apparent
in the behavioural observation data, though as with Brian, no direct reference to this
was made by the interviewees and no specific question was asked regarding this.
However, the last two comments above draw attention to the quality of her social
responses (e.g., excitement, animation, smiling) which in themselves were probably
seen as more important than the direction of engagement to the storyteller and may
indicate an increased engagement with her. It is important to note, too, that Claire was
 136 H. Young et al.

registered blind and hence the salience of social stimuli might detract from attention
to the story stimuli.

Outcome. Claire’s mother stated that there was a social outcome of the project for
Claire. Both mother and teacher identified positive changes in Claire’s tolerance of
touch, particularly when having her hair brushed:

She is now tolerating social outings with family members which she had not done before.
This includes going out for lunch…. She was even tolerating having her hair brushed now
and allowed me to French plait it! This has never happened before. (Claire’s mother)
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During and since the term of the project, Claire has now become more tolerant of having
her hair brushed. (Claire’s teacher)

Fraser: engagement with story. Congruence between mother’s and teacher’s

response and the behavioural analysis was found in Fraser’s case, with both referring
specifically to the increase is touching of the sensory objects on the book’s pages:

His interest in the materials, storyline and interaction with the stimuli increased over
time. (Fraser’s mother)

His resistance to touch and explore the latex items in earlier readings changed dramati-
cally in the final reading. He used purposeful and exploratory actions towards the items.
(Fraser’s teacher)

Social engagement. As noted above, there was no specific question regarding social
engagement and neither interviewee made any observation on this. The behavioural
observation, however, shows only a few seconds change across the four sessions in
eye gaze and looking at the storyteller.

Outcome. Fraser’s mother was confident that he had understood his story, illustrating
this with specific examples of the outcome. Fraser’s teacher, however, suggested that
more readings were required. This was a rare example of the two interviewees show-
ing some measure of disagreement:

He is definitely understanding the story content and is relating the story to himself…. He
gets embarrassed sometimes with the penis models. (Fraser’s mother)

Not yet. Needs more readings. (Fraser’s teacher)

Joseph: engagement with story. Responses from Joseph’s mother and teacher
concurred strongly with the behavioural analysis of the observations showing that
Joseph had demonstrated an increase in interactive behaviours with the story:

He has enjoyed the story and everything in it from the word ‘go’. This was particularly
evident on a couple of occasions when Joseph was extremely anxious and showing phys-
ical, challenging behaviour and immediately after this settled very quickly into his story.
(Joseph’s mother)

He clearly anticipated the storyline and the stimuli, recognised the symbols and objects,
became familiar with the story and used the objects appropriately through time of hear-
ing the story. (Joseph’s teacher)
 European Journal of Special Needs Education 137

Social engagement. The behavioural observations showed a consistent decrease in

social engagement across sessions; as for other cases, this was not dealt with explicitly
in the questionnaire, nor did the interviewees in Joseph’s case comment on this.

Outcome. Joseph’s mother and teacher reported that Joseph’s anxiety surrounding
dental interventions had reduced throughout the project. In addition, responses from
Joseph’s mother provided evidence of an increase in social engagement outside of the
project. Furthermore, Joseph’s mother also reported that her son now allowed his
mother to brush his teeth and the dentist to examine them:
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His anxiety about opening his mouth and using the different instruments has reduced
through using the story…. I feel he did associate the stimuli with going to the dentist….
It was beneficial to use the story with Joseph and his brother. They do not normally share
things but Joseph allowed his brother to ‘share’ hearing his story. For the first time, the
three of us read the story as a family. (Joseph’s mother)

He is certainly familiar now with the story and the objects that will be used at the
dentist…. I think the story has helped him and reduced his anxiety of visiting the dentist.
(Joseph’s teacher)

Martin: engagement with story. Both behavioural analysis and interviewee’s reports
indicated a lack of engagement with the story, and indeed, a decreasing engagement
as shown by the behavioural analysis. Throughout the course of the study Martin was
ill and off school on several occasions. In addition, his mother, the storyteller, was
also ill leading to long delays between sessions. Their comments confirmed the conse-
quences of these illnesses:

From the first reading (video) onwards he seemed interested and focused with the story.
During video 3 he liked the beginning of the story but seemed disinterested after this. I
am unsure why but it could be that he was tired and he was having an ‘off’ day. (Martin’s
mother)

During the project he was in hospital twice. (Martin’s teacher)

Social engagement. Martin’s social engagement across sessions decreased markedly.

Reference to this was implicit in the comment that he had become ‘disinterested’, though
as already noted above, no specific question was asked regarding social engagement.

Outcome. Responses from Martin’s mother and teacher suggested that it was not
possible to determine the outcome for Martin and that further readings would be
necessary to draw any conclusion:

I feel it is too early to say. He is only five years old now. I do hope that through time the
main outcome will be achieved and he will understand that seizures happen to him but
he will be OK. (Martin’s mother)

We are still at the stage of monitoring and interpreting Martin’s responses in general.
(Martin’s teacher)

Rebecca: engagement with story. There was consistency between the responses of
Rebecca’s mother and occupational therapist (the storyteller) and the behavioural
analysis with respect to with her story. Data from both sources highlighted the
increase in Rebecca’s attention to the pages of the story.
 138 H. Young et al.

She anticipated going to the toilet…. She showed a strong interest in the materials and
touching these. (Rebecca’s mother)

She clearly anticipated the storyline; how to use the stimuli; she made clearer responses
and also indicated preferences about likes/dislikes within the story. (Rebecca’s occupa-
tional therapist)

Social engagement. Rebecca’s occupational therapist commented on Rebecca’s posi-

tive social engagement within sessions. Since Rebecca was at a boarding school, her
mother did not have the opportunity to observe the storytelling until the end of the
project:
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Prolong[ed] hand-holding and eye contact – very positive response. There has been good
team working and Rebecca(’s) [showed] positive interaction with the storyteller.
(Rebecca’s occupational therapist)

Outcome. Rebecca’s mother and occupational therapist stated that Rebecca’s aware-
ness of the toilet routine had been enhanced as shown in her management of going to
the toilet alone and unaided, without her father being present while playing the guitar
as had been the case previously:

She recognised the symbols/photo in relation to the task…. It has helped Rebecca
more than I thought it would and helped her toilet routine which is now more struc-
tured, simple and focused…. We do not need to sit her on the toilet for lengthy peri-
ods of time any more. Dad does not play the guitar in the toilet now. (Rebecca’s
mother)

Somehow the process does work! I wasn’t sure that this most profound young person
would somehow make the connection between her story and the ‘real life situation’ I was
trying to teach, but she did! (Rebecca’s occupational therapist)

Sarah: engagement with story. The responses of Sarah’s mother and teacher were
highly consistent with the behavioural analysis showing an increase in Sarah’s atten-
tiveness to the story across sessions. The behavioural analysis also showed mainte-
nance of a high duration of touching the objects, an observation also made by her
teacher. The interviewees’ responses also enrich the behavioural analysis making
further observations on Sarah’s attentiveness:

Sarah had much more changes than I expected. She had more and more definite and
clearer responses to her story…. She does not put her hands to her mouth whilst listening
to her story, which was unusual as she would normally do this. (Sarah’s mother)

She associated the materials with the storyline…. She maintained interest, her vocali-
sations increased, she smiled more with increased enjoyment, she definitely anticipated
the storyline and came to know and accept when the storyline ended…. Keeping her
hands on the materials on first and last pages. She also did not bring her hand up to
her mouth/face during readings which is part of her normal behaviour. (Sarah’s
teacher)

Social engagement. While a striking decrease in Sarah’s social behaviour was

demonstrated in the behavioural analysis, no question was asked specifically on this
behaviour and neither interviewee spontaneously commented on this.
 European Journal of Special Needs Education 139

Outcome. Sarah’s mother and teacher were not sure of the outcome for Sarah of using
the story concerning menstruation for Sarah:

It is difficult to know if this has truly helped her. (Sarah’s mother)

It is difficult to know at this stage whether she has made the connection between her
story and the ‘real life’ event. (Sarah’s teacher)

William: engagement with story. There is a strong indication from both the behav-
ioural analysis and the responses of his mother (the storyteller) and nursery nurse that
William was highly engaged with his story:
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He was very attentive and listening more. He did wait longer. (William’s mother)

He looked unsure of the frog at first. Once he got used to it, he smiled. (William’s
nursery nurse)

Social engagement. The behavioural analysis showed a decrease in William’s social

behaviour, though neither interviewee commented on this.

Outcome. William’s mother and nursery nurse stated that William had developed a
clearer understanding of waiting and provided observations of William waiting for
longer periods of time across sessions:

The story has helped and I also feel that he seems to have developed a clearer under-
standing of the concept of having to wait. He was very attentive and listening more. He
did wait longer. (William’s nursery nurse)

The story increased his listening skills when asked to wait. (William’s nursery nurse)

Discussion
This is the first study to describe the patterns of engagement with multi-sensory story-
telling shown by young people with PIMD, and to determine the outcome of the expe-
rience for their ability to cope with sensitive issues identified by their parents. Positive
changes in engagement with the story were shown for seven of the eight participants
(Brian, Claire, Fraser, Joseph, Rebecca, Sarah and William). For six of the seven (all
but Sarah), a parent and a professional agreed that the outcome of the experience posi-
tively enabled the participant to cope better with the sensitive topic. The participant
for whom there was no evidence of increased engagement with the story (Martin) was
intermittently ill during the course of the study, as was his mother. Fraser was also
judged by his teacher not to have benefited from the storytelling, despite increasing
engagement with the story. His mother, however, considered that he did now cope
better with the sensitive issue of masturbation.
It is interesting to note that in some cases there was a clear synchrony between
engagement with the pages of the story and visual attention to the storyteller, i.e., as
attention to the story stimuli increased, visual regard of the storyteller diminished.
This was particularly consistent for two participants (Brian and Joseph) both of whom
had adequate visual functioning. In contrast, one participant who was registered blind
showed significantly increased attention to the storyteller across the three recorded
 140 H. Young et al.

sessions, though only a slight increase in engagement with the story stimuli. If the
principal modality of experiencing the story was the voice of the storyteller, this in
itself would be a further indication of engagement with the story.
Earlier we noted the reasons why multi-sensory storytelling was considered as a
means of addressing sensitive issues with people with PIMD. We noted, first, that the
activity of storytelling provides a single context in which the adult and young person
may jointly focus on aspects of the difficult topic. At the practical level of implement-
ing the project, this was amply borne out. For most storyteller-participant dyads, both
partners engaged in a focussed activity relevant to the chosen topic. The development
of this context was extremely demanding and time-consuming, involving careful anal-
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ysis of the person’s cognitive, motor and sensory abilities, protracted sourcing of some
of the sensory material and extensive preparation and rehearsal of the storytelling.
Second, we drew attention to the potential of multi-sensory storytelling to personalise
stories in such a way that a focus on the specific topic identified by the carer or profes-
sional as creating difficulties for the young person, linked to a real life situation, could
be achieved. This proved feasible, with topics related to sexuality, transitions and situ-
ations that lend themselves to such treatment. Only at the outer reaches of sensitivity
was it felt that additional research was needed to underpin the development of such
stories, most notably in the case of bereavement. Third, with respect to the content of
the stories it proved possible to develop a narrative that exemplified both the difficult
subject matter and provided some resolution, i.e., a positive ending to the story.
Fourth, we drew attention to the value of repetition. This was amply demonstrated in
a number of cases where clear behavioural trends were noted in engagement with the
story. In only one case (Martin) was there a clear decline in engagement, probably as
a result of external factors, most notably his and his mother’s illnesses. Fifth, we drew
attention to the enjoyable nature of storytelling. The quotations noted above again
explicitly support this aspect, with reference to participants being engrossed,
animated, excited, smiling, interested, etc., suggesting that further analysis of the
recordings from the perspective of affective behaviour would repay attention. These
strengths of the approach are, of course, intimately bound up. For example, mutual
focussing of attention, accessibility and enjoyment are all highly interdependent
(Detheridge and Detheridge 1997). It is only for the purpose of analysis that the
holistic nature of the experience of storytelling is not considered directly.
While the behavioural observation of events occurring during multi-sensory story-
telling is located in a by now well-developed technology with clear rules regarding
reliability and validity, proxy reports of the experience of people with PIMD raise
significant technical issues (Cummins 2005). There is evidence in the wider field of
intellectual disability that proxy reporting does not necessarily accord with the subjec-
tive judgements of persons with intellectual disabilities themselves. It is possible in
the present study that parents’ own commitment and emotional reactions to the
experience of dealing with sensitive issues through multi-sensory storytelling may
have influenced their perception of their son’s or daughter’s ability to cope with the
sensitive issues. Against this possibility we would note that, first, professional judge-
ments, both positive, and in one instance, negative, were consistent with parental
judgements in seven of the eight cases. Second, agreement was not inevitable as in the
case of Fraser’s parent and professional disagreed on the outcome.
Despite the reported positive outcomes, it is not possible to be specific about what
precisely was understood by the participants. It is unlikely that clear cognitive
constructs regarding the sensitive issue and how it should be coped with were formu-
 European Journal of Special Needs Education 141

lated. However, understanding in the sense of re-experiencing within a supportive

interaction that had once been threatening, concluding with a non-threatening resolu-
tion to the story, is clearly possible. After all, the external, real-life experiences were
well enough understood to result in significant behavioural and emotional difficulties
for the participants.
The issue of experimental control in such studies also merits consideration. In the
context of single-subject designs, the emphasis would be on the subject as their own
control rather than the use of a control group. Given the repeated measures across
sessions, this is to some extent the case in the present study. However, classic single-
subject designs, e.g., baselines measures or reversal designs would in our view distort
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the experience of storytelling for both the young person and story teller. There is a
very real sense in which we have tried to retain the holistic nature of storytelling while
collecting analytic data through naturalistic observation. However, strengthening the
design and evaluation of such interventions is a legitimate pursuit that might be
developed in future studies.
The consistency of the present results, however, indicates that the continued devel-
opment of multi-sensory storytelling has an important role to play in supporting
people with PIMD, their parents and the professional staff who care for and educate
them. Expanding and refining the behaviours observed would be valuable, particularly
with respect to affective responses. More refined interviewing with observations
rooted explicitly in examples of behaviours that indicate improved coping by the
young person with PIMD would also be valuable. The use of diary recording before
during and after the intervention is an example of one such method.
The use to which multi-sensory storytelling has been put in this study and the epis-
temological and methodological basis of the work were selected in response to the
identified needs of parents and their perception of their son’s or daughter’s experi-
ences. The approach adopted here is explicitly interventionist. This is not to suggest
that this is the only approach and context in which multi-sensory storytelling may
have value. In the wider context of the use of narrative with people with limited
communicative abilities, alternative uses, discourses and theories are possible, desir-
able and legitimate (e.g., Grove and Harwood 2010), and it would be premature to
attempt to colonise this field by adopting any single perspective.

Acknowledgements
This project and research was supported by a grant from the Scottish Government, Esmeé
Fairburn Foundation and the Roald Dahl Foundation.
We thank Chris Fuller for her unstinting support in the development of the multi-sensory
stories. Thanks, too, to the young people, their parents and professionals who participated in
the study over a lengthy period of time.

References
Adults with Incapacity Act. 2000. Edinburgh: Scottish Executive.
Cummins, R.A. 2005. Issues in the systematic assessment of quality of life. In Assessing
adults with intellectual disabilities: A service providers’ guide, ed. J. Hogg and A. Langa,
9–22. Oxford: Blackwell.
Detheridge, T., and M. Detheridge. 1997 Literacy through symbols: Improving access for
children and adults. London: David Fulton.
Fenwick, M. 2005. Multisensory sensitive stories. Eye Contact: RNIB 42: 12–4.
Fenwick, M. 2007. Sensitive stories. Insight: RNIB, 10: 30–2.
 142 H. Young et al.

Field, A.P. 2005. Intraclass correlation. In. Encyclopedia of statistics in behavioral science
Volume 2, ed. B.S. Everitt and D.C. Howell, 948–54. Chichester: Wiley.
Fox-Eades, J. 2006. Classroom tales: Using storytelling to build social, emotional and
academic skills across the primary curriculum. London: Jessica Kingsley.
Fröhlich, A. 1998. Basale stimulation: das Konzept. Düsseldorf: Verlag Selbstbestimmtes
Leben.
Fuller, C. 1990. Tactile stories. A do-it-yourself guide to making 6 tactile books. Resources
for Learning Difficulties.
Fuller, C. 1999. Bag books tactile stories. The SLD Experience 23: 20–1.
Grove, N. 2005. Ways into literature. London: David Fulton.
Grove, N. 2009. Stories for lifelong learning. The SLD Experience 55: 8–9.
Grove, N., and J. Harwood. 2010. Narrative with non speakers. How does it work? Journal of
Downloaded by [b-on: Biblioteca do conhecimento online IPL] at 06:59 10 April 2013

Applied Research in Intellectual Disabilities 23, no. 5: 497.

Grove, N., and K. Park, 2001. Social cognition through drama and literature for people with
learning disabilities: Macbeth in mind. London: Jessica Kingsley.
Hewett, D., and M. Nind. eds. 1998. Interaction in action: Reflections on the use of intensive
interaction. London: David Fulton.
Hogg, J., K. Juhlberg, and L. Lambe. 2007. Policy, service pathways and mortality: A 10-year
longitudinal study of people with profound intellectual and multiple disabilities. Journal
of Intellectual Disability Research 51: 366–76.
Hughes, D. 2004. An attachment based treatment of maltreated children and young people.
Attachment and Human Development, 6: 263–78.
Hulsegge, J., and A. Verheul. 1987. Snoezelen: Another world. Chesterfield: Rompa.
Longhorn, F. 1988. A sensory curriculum for very special people. London: Souvenir Press.
Miles, M.B., and A.M. Huberman. 1994. Qualitative data analysis: An expanded sourcebook.
Thousand Oaks, CA: Sage.
Nakken, H., and C. Vlaskamp. 2002. Joining forces: Supporting individuals with profound
multiple learning disabilities. Tizard Learning Disability Review 7: 10–5.
National Literacy Trust. 2007. Why families matter to literacy. http://www.literacytrust.org.
uk/assets/0000/2040/Why_families_matter.pdf
Nind, M. 1996. Efficacy of intensive interaction: Developing sociability and communication
in people with severe and complex learning difficulties using an approach based on care-
giver-infant interaction. European Journal of Special Needs Education 11: 48–66.
Noldus, L.P.J.J., R.J.H Trienes, A.H.M. Hendriksen, H. Jansen, and R.G. Jansen. 2000. The
observer video-pro: New software for the collection, management, and presentation of
time-structured data from videotapes and digital media files. Behavior Research Methods,
Instruments and Computers 32: 197–206.
Office for Standards in Education [Ofsted]. 1998. The National Literacy Project: An HMI
Evaluation. London: Ofsted.
Pagliano, P. 1999. Multisensory environments. London: David Fulton Publishers.
Schore, A.N. 1994. Affect regulation and the origin of the self: The neurobiology of emotional
development. Hillsdale, NJ: Erlbaum Associates.
Stern, D.N. 1985. The interpersonal world of the infant: A view from psychoanalysis and
development. New York: Basic Books.
Trevarthen, C. 1977. Descriptive analyses of infant communicative behavior. In Determinants
of infant behaviour, ed. H. Schaffer, 227–70. London: Academic.
Watson, M., L. Lambe, and J. Hogg. 2002. Real lives: Real stories. Dundee: University of
Dundee: PAMIS.