Designing Communication Technologies with Children who have Severe Speech and Physical Impairments

Abstract

Communication in its broadest sense allows for some sort of connection with people and things yet for some children this can be extremely limited owing to a host of contextual and bodily factors. Speech generating devices provide one perspective for supporting communication through technology but these are largely under-utilized by children as they have a dominant focus on communication through words. This work uses design thinking to investigate how communication might be mediated through technology in broader ways, based on children’s values for everyday interactions that they take part in. Taking an inductive, child-led approach and inspired by participatory design, I explore ways of involving children in technology design that has largely omitted their involvement.

Full text

Designing Communication
Technologies with Children who have
Severe Speech and Physical
Impairments
Abstract
Communication in its broadest sense allows for some
sort of connection with people and things yet for some
children this can be extremely limited owing to a host
of contextual and bodily factors. Speech generating
devices provide one perspective for supporting
communication through technology but these are
largely under-utilized by children as they have a
dominant focus on communication through words. This
work uses design thinking to investigate how
communication might be mediated through technology
in broader ways, based on children’s values for
everyday interactions that they take part in. Taking an
inductive, child-led approach and inspired by
participatory design, I explore ways of involving
children in technology design that has largely omitted
their involvement.
Author Keywords
Communication; participatory design; disability;
embodiment; multimodality.
ACM Classification Keywords
H.5.m. Information interfaces and presentation (HCI):
Miscellaneous.
Introduction: the research topic
The goal of this thesis is to rethink technology design
for advancing communication that involves children
who have severe speech and physical impairments
(SSPIs). It also aims to expand on the design processes
that we undertake through a child-led approach.
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Seray Ibrahim
UCL Knowledge Lab
UCL Institute of Education
University College London
23-29 Emerald Street
London WC1N 3QS
s.ibrahim.12@ucl.ac.uk

Technology solutions posed within the field of
augmentative and alternative communication (AAC),
offer one perspective for supporting communication in
‘no-tech’ and technology mediated ways. They
recognise that speech generating devices can
supplement multi-modal interaction. However, the
design of AAC technologies is failing to maximise the
communicative potential of children as demonstrated
by their abandonment and usability issues [17]. This
may be through the way in which language concepts
are represented but also through a focus on language
without recourse to considering other ways that
technologies can support communication in situ, for
example by examining the impact of others, objects,
movement and space. Since previous approaches have
been top down and focused on structural
communication, we are yet to understand what
motivators drive communication for these children. This
therefore raises the questions: 1. Are our assumptions
of what purposes communication technologies can
serve accurate; 2. Are these communication devices
best represented through words and speech; and, 3.
Can we better understand communication though
investigating it in a broader sense? In drawing on
design thinking, I argue that current AAC technologies
are under-serving children’s capabilities to
communicate as they neglect the broader ways that
communication is achieved and manifests within its
environment. Current solutions also ignore children’s
values for communication and the social connectedness
of people and things through this restricted focus.
Background and Related Work
The child computer interaction (CCI) community is
increasingly developing ways of involving children in
the design process. Methodological developments
within participatory design (PD) offer guidance on how
to involve children, for example through an
examination of their roles [9], and in legitimate and
non-tokenistic ways [14]. Children with disabilities have
traditionally been involved significantly less in
technology design research. When they have been
involved, their participation has tended to be adult
driven and often centred on an unrepresentative
minority of the population of children who have
disabilities, e.g. children with high functioning autism
[2]. The ways in which children’s contributions are
affected by their communication skills and proficiency,
power imbalances and the role of proxies to name a
few [11,12,13] suggest major challenges to involving
children with disabilities in design work. Whilst some
work has focused on proposing models for involvement,
these are heavily influenced by impairment-based
perspectives that only allow children to be involved in
so far as their difficulties allow them to, for example,
focusing on the severity of their impairments and
support needs [13]. Research methods that are
underpinned by deficit driven approaches offer widely
different ways of thinking about design which afford
different opportunities for children to contribute to
design decisions [2]. Such deficit-driven approaches
are in conflict with the ethos of neurodiversity
movements and the social model of disability, that
consider wider limitations posed by context [1,3]. In
line with this social framing, by de-centring the focus of
communication from humans alone, there is potential
to advance communication through technologies that
acknowledge contextual aspects that might advance or
hinder communication.
In a move away from communication theories that are
based on transmission models, my work sits within a
body of communication research that ontologically
takes a social and embodied approach for investigating
how children communicate and how this can be
mediated through technologies. Epistemologically, it
follows critical theories that reject the notion of dualism
of the body that is separate from the mind. I argue
instead that communication and meaning are created
socially and depend on lived experiences through the
body [5,18]. These embodied experiences exist and are
connected with other things in the physical world [8].

Methodologically, this work is influenced by inductive
approaches seeking to understand communication by
examining the multimodal ways in which resources are
used to create meaning [4], and from an interaction
design perspective, involving people who are directly
affected by technologies [6] by engaging with their
values [15]. I focus on peer interaction because it has
largely been underrepresented in communication
technology solutions yet interactions for children with
SSPIs, such as cerebral palsy, are typically restrictive
and imbalanced in nature [16,7]. A focus on peer
interactions offers potential for new learning about
designing technologies that focus on everyday
experiences with a view to strengthening how children
with SSPIs participate in daily life.
Research Goals and Questions
The goal of this thesis is to rethink technology design
for advancing communication that is socially situated
and embodied. I argue the values that people hold
largely shape their interactions with others, therefore
unearthing values related to communication through
child-led, situated experiences is central to my
approach. The second goal of this work is to build on
design processes for involving children who have SSPIs
through PD. PD advances this theoretical perspective of
communication as it enables exploratory and
emancipatory engagement, arguing that those affected
by technologies should be involved in its design [6]. PD
also comfortably allows for an engagement with
children’s values that inform design decisions, whilst
socially framing disability that moves the focus of
barriers away from individuals and towards the
environment.
§ RQ1: What does communication look like when it
involves children with SSPI and others; and what are
some of the values children express in
communication?
§ RQ2: How can new designerly practice and
thinking around the area of communication inform
future technologies?!
§ RQ3: How do we conceive trustworthy PD with
children who have SSPIs; how can PD support us in
understanding situated, embodied communication for
children who have SSPIs?
Methodology & Research Stages
An inductive design-oriented research approach will be
taken in this work to allow for open exploration of
possible design spaces that extend beyond what is
currently proposed by language driven AAC
technologies. The focal point is therefore to investigate
situated, embodied, and dialogic forms of
communication rather than focusing on technology-
driven solutions that address known paradigms [10].
The approach is guided by a social model of disability
for thinking about technology and design processes. It
centres on an engagement with children’s values that
advance through a PD approach, following on from
other values-led work [15] and a specific engagement
with the lived body as a multi-dimensional medium
[18] for being affected by and affecting the social world
[8]. I intend to address the three research questions in
four phases summarized in table 1.
Phase One. Oct 2015 – Mar 2017 [completed]
I completed three literature reviews that informed both
the methodological approach (RQ3) and theoretical
component (RQ1) of this work. All literature reviews
started with a search of the ACM library, Scopus and
ProQuest databases with the following keyword
searches.
The first literature review focused on PD, children and
disabilities. This enabled me to adopt a critical stance
for a methodology that is child-led, understanding how
others have undertaken related work. I also included
supplementary studies that were signposted within the
initial searches which enabled me to critique how
Research
stages
Research
methods
Phase 1
[completed]
Lit review:
Keyword ba sed
searches and
discussions with
PD researchers
who are engaging
with values.
Phase 2
[ongoing]
Fieldwork with
children:
observation &
design
workshops; data
analysis.
Phase 3
[planned]
Fieldwork with
designers
Public
engagem ent
events with
stakeholders.
Phase 4
[planned]
Thesis write up
Table 1: Ove rview of the
research methods use d across
different stages of the study

researchers from related fields (childhood and disability
studies) have undertaken child-led work. It allowed me
to critique both situated (naturalistic) and structured
approaches, e.g. designer led workshops and
observation.
The second literature review focused on values and how
these are investigated in design research. This also
informed the methods component of RQ3. The review
yielded five critical cases of PD that varied in how they
engaged with values based on their approach and
influences. This was followed by informal interviews
with PD researchers whose work was identified. The
overarching themes that emerged were related to
managing value recognition, value-driven actions and
conflicts as genuine moments of values. This activity
also informed RQ1 as I was able to develop my
theoretical perspective, informing how I would
investigate how children’s values are expressed through
communication.
The third literature review focused on communication.
It informed my theoretical approach for construing
communication as a socially situated, embodied
phenomenon (RQ1). By drawing on existing
communication theories from different ontological
positions, I was able to adopt a critical stance that
informed how I planned to investigate communication
for children with SSPIs.
Phase Two. Sept 2016 – Mar 2017 [ongoing]
Once ethical approval was obtained, I recruited five
children and their families who would become case
studies, invited via schools. Five participants were
identified as critical cases owing to their varying profiles
(personality, gender, physical skills, cognition and
communication). Fieldwork in school involved
observations in class and in the playground, class-
based workshops, documenting home and school life
through a life-logging camera, cultural probes and
regular liaison with parents and teachers. In addressing
RQ1, one of the key goals of this phase involves
advancing how we understand communication through
child-led work. I took a reflective approach, drawing on
different methods that were tailored to each child so
that I was able to engage with communication and
values in a holistic way. In the final part of this phase, I
am currently analysing the fieldwork data, informed by
multimodal analysis [4] of situated experiences.
Phase 3. Mar 2017 onwards. [planned]
This phase will address RQ2; conceptualising
technology design to inform future practice. I plan on
communicating children’s embodied experiences
(through generated designer boundary objects and
proposed theoretical perspective), inviting designers to
conceptualise communication technologies in new ways.
The theoretical insights and design concepts will be
shared with multi-stakeholders with the aim of
encouraging involved parties to review and rethink the
ways in which technology can advance communication.
It is envisaged that this child-led and situated approach
will foster a critical dialogue about the design of
assistive technology, in line with the emancipatory
promise of this work.
Conclusion
This thesis intends to offer the following contributions:
• New theoretical perspectives for explaining
communication that involves children who have
SSPIs (RQ1),
• Informing designerly practice and thinking in the
area of communication for new technologies
beyond language-based or deficit-based models
(RQ2), and
• A methodological contribution demonstrating the
opportunities and challenges in engaging children
in child-led design (RQ3).

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