CAA - Alterações Cognitivas

JMIR REHABILITATION AND ASSISTIVE TECHNOLOGIES Gibson et al
Review
Alternative and Augmentative Communication Technologies for

Supporting Adults With Mild Intellectual Disabilities During Clinical
Consultations: Scoping Review
Ryan Colin Gibson1, BSc (Hons), MPhil, PhD; Matt-Mouley Bouamrane2, BEng (Hons), MSc, PhD; Mark D Dunlop1,
BSc (Hons), PhD
1
Department of Computer and Information Sciences, University of Strathclyde, Glasgow, United Kingdom
2
Usher Institute of Population Health Sciences and Informatics, University of Edinburgh, Edinburgh, United Kingdom
Corresponding Author:
Ryan Colin Gibson, BSc (Hons), MPhil, PhD
Department of Computer and Information Sciences
University of Strathclyde
Computer and Information Sciences
Livingstone Tower, 26 Richmond Street
Glasgow, G1 1XH
United Kingdom
Phone: 44 141 548 318
Email: [email protected]
Abstract
Background: People with intellectual disabilities (IDs) face significant communication barriers when accessing health care
services; they find it difficult to identify and describe conditions clearly enough to support practitioners in making an accurate
diagnosis. In addition, medical professionals generally have little knowledge and understanding of the needs of people with ID,
which may result in the use of consultation techniques that do not cater to their patients’ skills.
Objective: This review aims to identify and synthesize the literature on alternative and augmentative communication technologies
that are used to support adults with mild ID during the exchange of information with medical practitioners.
Methods: We performed a scoping review of studies published in English that describe the technologies that are used to promote
communication with patients with mild ID during medical consultations. The databases searched were PubMed, ACM Digital
Library, and Google Scholar. A qualitative framework-based approach was used to synthesize the data and discern key recurring
themes across the identified literature.
Results: Of the 1557 articles screened, 15 (0.96%) met our inclusion criteria. The bulk of the communication aids used focused
on low-tech solutions, including patient passports, note-based prompts, Talking Mats, health diaries, and easy-read information
sheets. Their influence on current practice ranged from advancing medical professionals’ knowledge of the health and
communication needs of people with ID to increasing interagency collaboration, patient advocacy skills, and health promotion
activities. The major barriers to the implementation of low-tech aids were a lack of portability and increased maintenance efforts.
Only 3 studies explored the use of mobile apps to promote communication. Their findings indicated that high-tech solutions offer
greater customization with regard to the accessibility and health care needs of people with ID.
Conclusions: Alternative and augmentative communication technologies have the potential to increase the quality of care
provided to patients with mild ID; however, little work has been carried out in this area. Greater emphasis must be placed on
(high-tech) two-way communication aids that empower patients to become involved in decisions regarding their care. Quantitative
evaluation methods should be used to discern the true benefits of such aids, and researchers should describe their study protocols
in depth to promote replication and generalizability.
(JMIR Rehabil Assist Technol 2021;8(2):e19925) doi: 10.2196/19925
KEYWORDS
intellectual disabilities; health care; communication; alternative and augmentative communication; communication modalities;
mobile applications; patient passports; Talking Mats; health assessment booklets
https://rehab.jmir.org/2021/2/e19925 JMIR Rehabil Assist Technol 2021 | vol. 8 | iss. 2 | e19925 | p. 1

(page number not for citation purposes)
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Objective
Introduction
Technology has the potential to provide such support as it has
Background been shown to enhance the lives of people with cognitive,
People with intellectual disabilities (IDs) are consistently intellectual, or physical disabilities [17-19]; however, little is
subjected to health inequalities [1-5], which significantly affect known about its use in the clinical context for people with ID.
the length and standard of their lives [4,6,7]. Heslop et al [4] Consequently, we conducted a scoping review to synthesize the
demonstrated this in 2013 while studying the deaths of 247 literature on the use of communication technologies to support
patients with ID in southwest England; of those deaths, 103 people with mild ID during clinical consultations. The results
(41.7%) were classified as unexpected or premature, with 68 of our review are presented in the form of four themes that were
(27.5%) directly attributable to low-quality care. In addition, developed using thematic framework analysis.
the patients suffered from an average of five long-term or
treatable conditions during the period leading up to their deaths Methods
[4], several of which were straightforward to diagnose and cure,
for example, constipation in 37% of cases and pressure sores
ID Definition
in 34% of cases. Throughout this paper, we refer to the term intellectual
disabilities by using the World Health Organization definition:
Previous literature has suggested that many of the inequalities “a significantly reduced ability to understand new or complex
experienced by patients with ID are preventable, particularly information and to learn and apply new skills (impaired
the breakdown in communication with health professionals intelligence). This results in a reduced ability to cope
[1-3,5]. To overcome such communication barriers and therefore independently (impaired social functioning) and begins before
provide improved person-centered care, practitioners are adulthood, with a lasting effect on development” [20]. There
encouraged to use national [8,9] and international [10] are several manifestations of ID, with their impact on an
guidelines. Much of this advice centers on the implementation individual’s social and cognitive functioning ranging from mild
of reasonable adjustments that cater to the patient’s individual to severe [21]. This review focuses on people with mild ID who,
needs. These adjustments include aspects such as using the in general, live independent lives but may require support to
patient’s preferred method of communication, avoiding the use complete complex processes such as understanding medical
of medical jargon to cater to their reduced vocabulary and conditions. We hypothesize that this population is more likely
cognitive abilities, and ensuring that patients understand the to benefit from health-related interventions, such as digital
information conveyed to overcome impairments in their communication aids, as people with severe ID tend to seek
receptive skills [8-10]. In addition, the practitioner should support during basic tasks, meaning they are unlikely to use
consider and be vigilant for gestures that emphasize the such technologies autonomously or be in charge of their own
information being exchanged, assign additional time to the health care.
consultation to allow the patient to deliberate what has been
said, and provide information in advance of the appointment to Aim
allow the patient to prepare adequately [8-10]. This review aims to identify and synthesize a range of
However, medical professionals frequently report that they are technologies and modalities used to promote communication
undertrained on the health and accessibility needs of people between patients with mild ID and health professionals.
with ID [11-13] and therefore lack the confidence and skills to Consequently, the research question underpinning this review
implement the proposed guidelines. In this context, innovative is, “What technologies are being used to support adults with
practices have been introduced to improve the standard of care mild ID to communicate more effectively with medical
administered [1,2]. The bulk of these innovative practices practitioners?”
attempt to mitigate the gaps in knowledge held by staff via the In addition to these research questions, the scoping review has
establishment of patient-focused training sessions and the the following objectives:
increased availability of ID information resources. In addition,
health care organizations have changed their pathways to include • Subobjective 1: determine how the identified aids were
targeted health check programs that assist in diagnosing common being used by patients with mild ID and medical
conditions experienced by people with ID. Multidisciplinary professionals
teams of health professionals have also been formed to support • Subobjective 2: determine how the benefits of the aids were
this process, including the specialized skills possessed by ID evaluated
nurses [1,2]. Our work differs from that of Chinn [22], as its focus is on the
Nevertheless, medical staff are currently overworked [14,15], technologies being used by patients with mild ID instead of
meaning they have limited opportunities to seek additional other forms of support such as health-related training courses.
training. This, combined with the decline in the number of Research Methodology
specialized professionals such as ID nurses [16], suggests that
Arksey and O’Malley [23] presented four common scenarios
other forms of support must be explored to promote
where scoping reviews are an appropriate methodology to use,
communication between practitioners and patients with ID.
two of which align with our research objectives: (1) examining
the extent, range, and nature of research activity within a domain

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and (2) identifying research gaps within the existing literature. authors were resolved by MDD. Searches across the 3 databases
As such, the framework of Arksey and O’Malley [23] was used resulted in 5 articles that were reviewed by RCG and MMB, of
to rapidly map the key concepts within our target domain, which which 2 were also reviewed by MDD.
consisted of the following 5 flexible steps:
ACM was identified because of its focus on technology,
• Research question formulation (Aim section) particularly articles centering on the development of AAC aids.
• Identification of relevant studies (Search Strategy section) In addition, the literature returned by ACM does not overlap
• Study selection (Inclusion Criteria and Study Selection with that identified by PubMed, which increases the
sections) comprehensiveness of the search. Relevant articles were chosen
• Charting the data (Data Charting section) using the same process as described above.
• Collating, summarizing, and reporting the results (Analysis
Finally, Google Scholar was selected as it is often used to
section)
supplement evidence searches by returning relevant articles
Search Strategy cataloged in databases beyond those originally queried [24].
To conduct a holistic search that included technological, Researchers often limit their Google Scholar queries to the first
sociotechnical, and disability-focused communication studies, 50 to 100 articles [24] because as a ranked retrieval system, the
3 databases were queried (PubMed, ACM Digital Library, and relevance of the literature diminishes as the search progresses.
Google Scholar) using the terms shown in Textbox 1. These However, we increased this number to 200, based on the
phrases were based on Medical Subject Headings relating to following procedure: the search results for query 1 (Textbox 1)
communication, ID, and clinical consultations in conjunction were split into groups of 50. The first batch of 50 was then
with a variety of alternative and augmentative communication screened (using the same process as the previous databases),
(AAC) technologies. In all, 15 queries were carried out (Textbox with the investigators moving on to the next batch only if a
1), resulting in the identification of 1737 articles published potentially relevant article was identified via its abstract;
before November 2019: 747 from PubMed, 140 from ACM, otherwise, the search was terminated. This procedure was
and 850 from Google Scholar. Separate queries were used per repeated for queries 2 to 5, with the highest batch number being
database because of their differing scopes. For example, it was used as a limit for all Google Scholar searches. To elaborate, a
not appropriate to search for Talking Mats or patient passports relevant article was identified in the third batch of the second
in the ACM database as the articles returned primarily focused query, meaning the first 200 results of the other queries were
on high-tech interventions such as mobile apps. scrutinized where possible. Nevertheless, it is important to note
that some of the searches returned less than 200 articles,
PubMed was selected because of its focus on medical studies, meaning all were scrutinized as the N size fell below the defined
including those that discuss the implementation of interventions. limit.
Each of the unique articles retrieved from PubMed had their
titles and abstracts screened by RCG against the inclusion and Figure 1 contains a PRISMA (Preferred Reporting Items for
exclusion criteria described in the following subsection. Systematic Reviews and Meta-Analyses) flow diagram [25]
Potentially relevant articles were then read in their entirety to detailing the steps involved in identifying relevant articles.
identify those that adhered to the selection criteria, with more These articles were then subjected to a qualitative
obscure articles being analyzed by MMB before their inclusion framework-based analysis to synthesize the results and
or omission. The areas of conflict between the first and second determine key recurrent themes (Analysis section).

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Textbox 1. Search queries and search terms.

PubMed
• Query 1
• ((“intellectual disability”[MeSH Terms] OR (“intellectual”[All Fields] AND “disability”[All Fields]) OR “intellectual disability”[All Fields])
AND (“communication”[MeSH Terms] OR “communication”[All Fields])) AND (“referral and consultation”[MeSH Terms] OR (“referral”[All
Fields] AND “consultation”[All Fields]) OR “referral and consultation”[All Fields] OR “consultations”[All Fields])
• Query 2
• ((Alternative[All Fields] AND Augmentative[All Fields] AND (“communication”[MeSH Terms] OR “communication”[All Fields])) AND
(“learning disorders”[MeSH Terms] OR (“learning”[All Fields] AND “disorders”[All Fields]) OR “learning disorders”[All Fields] OR
(“learning”[All Fields] AND “disabilities”[All Fields]) OR “learning disabilities”[All Fields])) AND clinical[All Fields]
• Query 3
• ((“speech”[MeSH Terms] OR “speech”[All Fields] OR “talking”[All Fields]) AND “mats”[All Fields])) AND clinical[All Fields]
• Query 4
• (alternative[All Fields] AND augmentative[All Fields] AND (“communication”[MeSH Terms] OR “communication”[All Fields])) AND
clinical[All Fields]
• Query 5
• ((“communication”[MeSH Terms] OR “communication”[All Fields] OR (“personal”[All Fields] AND “communication”[All Fields]) OR

“personal communication”[All Fields]) AND passports[All Fields]) AND clinical[All Fields]
• Query 6
• (pictures[All Fields] OR images[All Fields] OR graphics[All Fields]) AND clinical[All Fields] AND ((intellectual[All Fields] OR
(“learning”[MeSH Terms] OR “learning”[All Fields])) AND disabilities[All Fields])
• Query 7
• ((“communication”[MeSH Terms] OR “communication”[All Fields]) AND (((“learning”[MeSH Terms] OR “learning”[All Fields]) OR

intellectual[All Fields]) AND disabilities[All Fields])) AND clinical[All Fields]
ACM Digital Library
• Query 1
• ((“intellectual” AND disability”) AND communication) AND consultations
• Query 2
• (“Alternative” AND “Augmentative” AND “Communication”) AND (“Learning” AND “Disabilities”) AND “clinical”
• Query 3
• (pictures images graphics “clinical” disabilities) AND recordAbstract:(+intellectual +learning)
Google Scholar
• Query 1
• ((“intellectual” AND “disability”) AND “communication”) AND “consultations”
• Query 2
• ((“Alternative” AND “Augmentative” AND “communication”)) AND “learning disabilities”) AND “clinical”)
• Query 3
• (“Talking” AND “Mats”) AND (“learning” AND “disabilities”) AND “clinical”
• Query 4
• (“personal” AND “communication” AND “passports”) AND (“learning” AND “disabilities”) AND “clinical”
• Query 5

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• allintitle: “clinical” AND “disabilities” AND “pictures” OR “images” OR “graphics” OR “intellectual” OR “learning”
Figure 1. PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) flowchart of this scoping review.
assessed using the following three characteristics based on the

Inclusion Criteria aspects identified by Alborz et al [1]: (1) clarity of research
The review was restricted to literature that discussed the use of questions or goals; (2) appropriateness of the methods employed
technology to promote communication between patients with in relation to the research questions; (3) and consideration of
mild IDs and health professionals. Textbox 2 describes the study limitations.
inclusion criteria used to screen relevant articles based on the
PICOS (participants, intervention, comparison, outcomes, and N size is often used as a proxy for the quality of a study;
study) search tool [26]. however, it was not considered appropriate for article exclusion
because of our interest in the development of technologies and
Articles may also have been excluded if they were deemed to their implementation.
be of low quality by any research team member. This was

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Textbox 2. Inclusion criteria for relevant articles.

Participants
• Adults aged 18 years or older with mild intellectual disabilities and health professionals; studies were also included where little information on
the participants’ intellectual disability was provided.
• We used the World Health Organization’s definition of intellectual disability [20], which therefore rules out conditions linked to cognitive decline
because of aging or other neurological disorders acquired later in life, for example, dementia. Participants with physical disabilities (eg, cerebral
palsy) and no accompanying cognitive impairments were also excluded.
Interventions
• A range of communication modalities or technologies used to promote the exchange of information between patients with mild intellectual
disability and health professionals during clinical consultations. This, therefore, excludes clinical studies with no focus on communication and
evaluation of aids used to manage a specific condition. To be considered relevant, articles had to describe the components that comprised the
aid. For example, it was not enough to state that a patient passport was used; rather, the characteristics included in the passport also had to be
described. As such, the elements that influenced practice could be identified.
Comparator
• The review was not limited to comparator studies.
Outcomes
• Qualitative and quantitative data reporting the effects of communication aids and modalities on clinical consultations involving adult patients
with mild intellectual disability.
Study type
• Primary studies only were considered relevant in this review.
Analysis
Study Selection
A deductive, framework-based analysis [42] was used to
As shown in Figure 1, a total of 15 articles met our inclusion
synthesize charted data. RCG developed an initial thematic
criteria. Of the initial 1553 articles that had their abstracts
model capable of answering the research objectives proposed
screened, 1514 (97.49%) were immediately excluded from the
by using the communication barriers or facilitators discussed
review. Consequently, 39 were read in their entirety, of which
in other reviews [43,44]. This model was then discussed by the
15 (38%) were deemed appropriate for inclusion in the review.
coauthors and agreed upon by consensus. RCG then applied the
A total of 20 articles were excluded because they did not fit our
framework to a subset of the articles (consisting of 1 study per
intervention inclusion criteria, and a further 4 were excluded
distinct AAC aid identified) and subsequently extended it where
because they failed to meet our participants’ inclusion criteria.
necessary, under the guidance of Gale et al [42], to include
No articles were excluded based on quality.
important aspects of the data that did not immediately adhere
Data Charting to the original concepts. To limit bias, Gale et al [42] also
RCG and MMB jointly developed a data-charting form to extract suggested that researchers reach a consensus on the coding
relevant information from the identified studies. The applied to at least the first few transcripts. As such, MMB
characteristics within this form were similar to those proposed proceeded to review the tagged data, with any discrepancies in
by Arksey and O’Malley [23] and included authors year of the applied framework being resolved by MDD. The remaining
publication, study location, study aim, intervention, study articles were then analyzed by RCG using this framework, with
design, populations, and key results. The same authors additional subthemes being created as required. MB and MDD
independently charted the data and discussed their conclusions were consulted on the creation of new tags to ensure that they
with MDD on hand to resolve any discrepancies. A summary were necessary and did not align with the other concepts. The
of the charted data is provided in Multimedia Appendix 1 final revised thematic framework can be found on the the
[27-41]. University of Strathclyde website [45]; a summary of the themes
is provided in Textbox 3.

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Textbox 3. Thematic framework.

Communication barriers and facilitators
• This theme addresses the various practices that have an adverse or positive impact on information exchanges between medical professionals and
patients with mild intellectual disability, covering aspects such as organizational procedures, fragmentation of care, education and training
opportunities, and person-centered care.
Technological aids
• This theme identifies the various forms of communication aids used by patients and practitioners during clinical consultations and has been split
into two primary subthemes: paper-based technologies and more complex digital technologies. An overview of the features included within each
aid is provided.
Communication modalities
• This theme introduces the communication modalities employed throughout the aids, including the benefits and drawbacks of each. It also highlights
the need for technologies to be adaptive because of the wide range of skills and needs experienced by people with intellectual disability, meaning
a one-size-fits-all approach is unsuitable.
Evaluation and impact
• This theme discusses the various qualitative and quantitative methods used within the identified studies. It also introduces the perceived impact
of the communication aids under scrutiny.
the results of the framework-based thematic analysis. An

Results in-depth description of the selected studies may be found in
In this section, we first present the general characteristics of the Multimedia Appendix 1, with a short summary provided in
identified studies (publication and participants) before discussing Table 1.

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Table 1. Short overview of the identified studies.

Study (Author [year]; assessment tool) Complexity Modality Participants Evaluation
High- Low- Text Imagery Speech Mainly people Mainly other Qualitative Quantitative
tech tech with IDa populations
Jones and Kerr [27] (1997); paper-based ✓b ✓ ✓ ✓

checklist
Dodd and Brunker [28] (1999); image ✓ ✓ ✓ ✓ ✓
cards and training session
Lennox et al [29] (2001); CHAPc ✓ ✓ ✓ ✓
Lennox et al [30] (2004); Ask It Health ✓ ✓ ✓ ✓ ✓

Diary
Bell and Cameron [31] (2008); Talking ✓ ✓ ✓ ✓ ✓
Mats
Lennox et al [32] (2010); CHAP and Ask ✓ ✓ ✓ ✓ ✓
It
Turk et al [33] (2010); hand-held health ✓ ✓ ✓ ✓
record
Brodrick et al [34] (2011); patient pass- ✓ ✓ ✓ ✓
port
Bell [35] (2012); patient passport ✓ ✓ ✓ ✓
Heifetz and Lunsky [36] (2018); patient ✓ ✓ ✓ ✓
passport
Gibson et al [37] (2018); tablet app ✓ ✓ ✓ ✓ ✓ ✓
Raemy and Pignon [40] (2019); patient ✓ ✓ ✓ ✓
passport
Chinn [41] (2019); easy-read health in- ✓ ✓ ✓ ✓ ✓
formation
a
ID: intellectual disability.
b
Checkmark indicates the presence of that characteristic within the study.
c
CHAP: Comprehensive Health Assessment Program.
Furthermore, all studies identified during the data collection

Overview of the Studies Selected phase were carried out in countries that are members of the
Publication Organization for Economic Cooperation and Development
(OECD), with most centering on the health care infrastructure
Of the 15 articles that met our inclusion criteria, 9 (60%) were
of the United Kingdom [27,28,31,33-35,37-39,41] and Australia
retrieved from PubMed [27,29,30,34,36,38-41], 5 (33%) from
[29,30,32]. As such, the generalizability of the findings may be
Google Scholar [28,31-33,35], and 1 (7%) from ACM [37]. In
limited, particularly regarding the impact of AAC technologies
total, 13% (2/15) were published in the 1990s [27,28], 20%
on patients with ID from non-OECD nations.
(3/15) were published in the 2000s [29-31], and 67% (10/15)
in the 2010s [32-41]. This finding highlights a substantial Participants
increase in the number of studies published on the focus of our
review since the turn of the millennium and is in line with the Participants Involved in the Design and Development of an
heightened awareness of issues relating to the accessibility of Intervention
services for people with ID [46,47]. However, despite such an In total, 6 of the articles described the design and development
increase, the study of Hemsley and Balandin [43] on the quality of an intervention to promote communication between adult
of communication between medical professionals and patients patients with mild ID and health professionals [30,34,37-40].
with severe communication disabilities concluded that the use Surprisingly, target stakeholders were not heavily involved in
of AAC in this context remains limited. Environmental barriers the design process (despite increasing expectations of the use
were cited as negatively affecting the implementation of AAC of co-design methodologies [48]), with investigators largely
technologies, as was the knowledge of staff who find it difficult deferring to the views of other populations. For example, Lennox
to adapt to technologies brought in externally by patients [43]. et al [30] relied upon an advisory group (consisting of 2

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individuals with ID, 2 support workers, 2 parents, 2 advocacy 26.5% (62/242) had severe ID, whereas 30.2% (73/242)
organization representatives, and an occupational therapist) to participants had an unknown level of ID. Jones and Kerr [27]
develop a health diary for persons with ID. Their initial designs also followed the same approach, with 25.2% (28/111) of their
were then scrutinized, before implementation, by 101 people participants having mild or moderate ID and 35.1% (39/111)
across 15 focus groups, yet health professionals (1 general having severe ID. Consequently, researchers must provide a
practitioner [GP] and 2 psychologists) and patients with ID (8 consistent, in-depth description of the populations targeted by
persons) were underrepresented during this process. their studies to increase the generalizability of their findings.
Both Brodrick et al [34] and Raemy and Paignon [40] also Thematic Analysis
followed the approach of using a multidisciplinary team to
develop their respective interventions—a 1-page patient passport Communication Barriers and Facilitators
and an emergency admission sheet. However, the authors failed Several studies performed qualitative investigations on the
to report the exact demographics of the members involved, barriers and facilitators to effective communication between
meaning it was difficult to discern the influence people with ID health professionals and patients with mild ID. Their findings
had on the design process. This was particularly true in the study primarily align with the literature (such as the studies by Alborz
of Brodrick et al [34], where it was unclear whether the ID et al [1], Krahn et al [2], Ali et al [3], Murphy [13], Hemsley
population had any input on the intervention design. and Balandin [43], Selick [49], Chew et al [50], and
Pelleboer-Gunnink [51]) and highlight the factors being targeted
Finally, Gibson et al [37-39] used a variety of experts in ID
by the aids introduced in theme 2—Technological Aids.
(researchers, support workers, health professionals, and
representatives from ID charities) to develop a technology probe Organizational Barriers and Facilitators
of an AAC app to support adults with ID when communicating
Collation of Data
with GPs. This probe will be embedded in future user-centered
design sessions involving participants with mild ID to ensure Both Raemy and Paignon [40] and Jones and Kerr [27]
that the representative requirements for the proposed app are suggested that a limited collation of health care data regarding
established. Consequently, the lessons disseminated by Gibson ID was a major barrier for patients’ access to effective services.
et al [37-39] are likely to be premature and subject to change Raemy and Paignon [40] revealed that Switzerland is yet to
based on the views of the target stakeholders. implement a national policy regarding the health needs of people
with intellectual or developmental disabilities, meaning that
Participants Involved in the Evaluation of an Intervention institutions are not expected to record the details of a patient’s
In contrast, participants with mild ID contributed highly to most ID, nor have appropriate strategies in place to do so. As such,
studies focusing on the evaluation of an intervention medical professionals may remain unaware of their patients’
[27-29,31-33,35,41]. The only exceptions were the evaluation additional needs and therefore fail to conduct the recommended
of a health passport by Heifetz and Lunsky [36], in which only reasonable adjustments to their consultation methods. In
3 participants with ID completed the feedback questionnaire addition, the recruitment pathways available to researchers are
compared with 25 family members or support workers, and the impacted considerably, as highlighted by Raemy and Paignon
evaluation of the Comprehensive Health Assessment Program [40], who were forced to identify participants via residential
(CHAP) by Lennox et al [29], where the views of practitioners accommodation.
were sought exclusively. A study (Turk et al [33]) reported that
Jones and Kerr [27] also acknowledged that it might be difficult
a high number of participants with ID (35⁄108, 32.4%) dropped
for institutions to recognize patients with milder ID. They
out before completion. This was attributed to people with ID
expected to locate approximately 150 registered patients with
being more likely to refuse follow-up interviews as well as
ID across 5 GP practices (based on national figures) throughout
having a higher probability of changing GPs than the general
their study, yet could only identify 39. Consequently, there may
population, meaning they were exempt from the study.
be a hidden population of patients with mild ID who are unable
Although people with ID were prevalent throughout the to receive the same benefits as those known to medical
evaluations, only 4 of the articles offered concrete or partial professionals.
statistics on the etiology of their participants’ disability
Collaboration
[27,29,32,33]. As such, we were unable to decipher the
characteristics of 72.5% (384/530) of the participants with ID In addition to the lack of guidance from national strategies, local
involved in the evaluation studies. In total, 18.5% (98/530) had health care infrastructure may impede collaboration between
Down Syndrome [27-29,32,33]; 3.9% (21/530) had autism [33], medical professionals treating patients with ID. Fragmentation
3% (16/530) had cerebral palsy [33]; and 2.1% (11/530) had of care was recognized by Bell [35] and Heifetz and Lunsky
other congenital factors, perinatal birth problems, or epilepsy [36], stemming from a lack of coordination across faculties
[33]. The authors noted that cerebral palsy and epilepsy are not [35,36] and between health care organizations and social care
often a direct cause of ID but instead coincide with this [36]. As such, people with ID are less likely to receive optimal
condition. Nevertheless, we have included them to provide an care because they are prone to developing comorbidities [52],
accurate summary of the participant characteristics reported by which require treatment from a variety of specialists.
the identified studies. Lennox et al [32] primarily measured the Furthermore, patients might find it difficult to adapt to the
severity, but not the cause, of ID present in their participants procedures employed by separate institutions if they are not
and found that 44.2% (107/242) had mild or moderate ID and standardized.

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In addition, Heifetz and Lunsky [36] noted that there might be how patients with ID express pain, common health conditions
some resistance to agencies moving away from their own affecting the ID population, and communication strategies to
practices and instead adopting standard processes or tools, even ensure patients are involved in the decisions regarding their
if there are clear benefits of doing so. In such cases, it is care. There is also scope to explore whether training support
important to establish a champion who can provide strong workers and family members would also have an impact on the
leadership in overseeing the adoption of the intervention, which health of people with ID [40].
may include scheduling regular feedback meetings with
stakeholders and periodically reviewing the positive effects of
Support
the intervention. This is particularly important in projects where There was some disagreement on the impact that external
benefits are not immediately clear [36]. support may have on consultations involving adults with ID.
Turk et al [33], Heifetz and Lunsky [36], Gibson et al [37,38],
Time and Lennox et al [30] recognized the important role that
Dodd and Brunker [28] and Ramey and Paignon [40] highlighted caregivers play in empowering individuals with ID to provide
the impact time constraints might have on consultations their own views. This typically involves serving as a mediator
involving patients with ID. First, Dodd and Brunker [28] between the patient and health professional to ensure that both
suggested that this population is often rushed to communicate sets of stakeholders communicate in a manner understood by
their health needs to practitioners, which opens up the possibility the other. In addition, they may be familiar with the patient’s
of caregivers becoming overinvolved to ensure everything is everyday needs and routines [30], which can assist in
addressed. As such, the accuracy of the information being determining the optimal course of treatment for individuals with
provided may be significantly reduced (see the Support section). ID.
Instead, caregivers should aim to remain in a purely supportive
role and encourage patients to proceed at their own pace while However, the described benefits are largely dependent on the
interacting with a doctor [28]. In addition, Raemy and Paignon level of involvement a support worker has in the patient’s life.
[40] observed that time constraints, particularly in emergency For example, Gibson et al [38], Turk et al [33], and Heifetz and
situations, prevented medical professionals from thoroughly Lunsky [36] noted that some people with ID have to cope with
exploring all possibilities of an individual’s condition. This everchanging support workers. Therefore, new staff may be
included examining the patients often extensive medical histories unaware of the person’s health history and specific
to gauge whether they had displayed similar symptoms in the communication needs, meaning they will have less of an impact
past. on the consultation. Furthermore, there is a possibility that
caregivers become overinvolved in the consultation and begin
Education communicating on behalf of the patient [28]. This could reduce
As discussed previously, medical professionals tend not to be the accuracy of the information conveyed because of their own
well educated on the health and communication needs of people opinions, differing from that of the individual with ID. Finally,
with ID [11,12]; 4 of the identified studies discussed how this Raemy and Paignon [40] demonstrated the advantages of
can have a negative impact on the quality of care provided employing more specialized medical professionals to support
[35,37,38,40]. First, Raemy and Paignon [40] suggested that a frontline staff. For 3 years, an ID nurse provided training to
lack of knowledge regarding the health trends experienced by less-educated professionals, which improved the standard of
people with ID may result in the overshadowing of conditions care provided to 1017 patients with ID.
(ie, the association of a symptom with the disability itself, as Person-Centered Care
opposed to some other disorder) and poor coordination of care.
Gibson et al [37,38] and Bell [35] also indicated that insufficient Lennox et al [30] and Bell [35] noted that optimal care was
training could affect health professionals’ ability to perform administered by practitioners who went out of their way to meet
reasonable adjustments, particularly when exchanging individual patient needs. This included simple adjustments such
information via verbal communication is not an option. as allowing extra time for the individual to get across their
Practitioners also complained that they were ill-equipped to views, being kind and empathetic toward a patient’s situation,
overcome the challenging behaviors presented by patients with interacting directly with a patient rather than their caregiver,
more severe ID [35]. using appropriate communication strategies to ensure the patient
understands the information conveyed, and looking past a
Due to the shortcomings of undergraduate medical courses person’s disability to treat them like a human being.
[11,12], Bell [35] and Raemy and Paignon [40] called for the
introduction of compulsory training sessions on how to treat Two strategies were discussed that may assist practitioners in
patients with ID effectively. Bell suggested that this content carrying out such adjustments. First, medical professionals
should focus on the specific communication strategies employed should be given access to the personal characteristics of their
by the ID population, including basic signing systems and other patients, for example, their preferred method of communicating
modalities such as imagery [35]. Raemy and Paignon [40] the terms yes and no. Second, patients should be encouraged to
developed a variety of educational resources in conjunction seek appointments with the same medical professional, thus
with people with ID to suit the specific needs and workloads of allowing a relationship to form over time [30,35]. Consequently,
a variety of health professionals. These resources (which ranged practitioners can become increasingly aware of the specific
from a 15-min educational session to a 5-day training program) needs of individuals with ID, yet Chinn [41] suggests that this
covered important aspects such as behavioral traits, including

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may be difficult for traditional medical professionals in version and integrated it within their electronic patient data
comparison with ID nurses. system to increase the portability of the aid produced. Multiple
health care professionals may also have access to passports at
Technological Aids the same time if required.
In this section, we analyze the various technologies used in the
identified studies. To do so, we grouped these technologies into CHAP or Notes-Based Prompts
two main categories: low-tech communication aids and high-tech Lennox et al [29,32] and Jones and Kerr [27] explored using
communication aids. We define a low-tech aid as a nonelectronic note-based prompts to support medical professionals in
tool, external to an individual’s body, that assists the user in investigating specific areas of a patient’s health. The CHAP
communicating a message to a relevant partner. In contrast, a [29,32] is composed of a list of screening opportunities and
high-tech aid is a complex electronic device that permits the preventive activities commonly used by people with ID.
storage and retrieval of messages, many of which are used Practitioners then use this information to determine whether
during the formulation of speech output [53]. appropriate health checks have been carried out periodically
with the patient. As a result, the CHAP is less likely to positively
Low-Tech Aids affect time-critical environments, such as primary care
Patient Passports consultations, where the emphasis is placed on treating the most
The bulk of the studies (Brodrick et al [34], Bell [35], Heifetz immediate symptoms present [32]. Instead, it is more suited to
and Lunsky [36] and Raemy and Paignon [40]) centering on interventions such as the ID annual health check, as medical
low-tech communication aids used some sort of patient passport. professionals have an extended amount of time to consider all
Patient passports encapsulate an individual’s characteristics to aspects of a patient’s well-being.
assist medical professionals in adjusting their consultation In addition to the CHAP, Lennox et al [29] supplied health
methods to provide consistent, person-centered care. They are professionals with a short summary of the recent health trends
typically short in length to allow relevant information to be of people with ID, a strategy they found most convenient to use
accessed quickly and may be maintained by all sets of in general practice. Jones and Kerr [27] also employed a similar
stakeholders involved in a medical consultation, that is, approach to encourage practitioners to be vigilant for, and
clinicians, support workers, family members, and the patient follow-up on, conditions that may otherwise have been missed
themselves. As such, they are likely to contain a range of or overshadowed. They combined such evidence with a synopsis
perspectives on the optimal way to interact with a patient with on the best practices to implement when interacting with a
ID, thus increasing the probability of doing so effectively. patient with ID, thus potentially increasing the amount and
The passports implemented shared common features but were accuracy of information being extracted. Nevertheless, they
often tailored to meet the requirements and infrastructures of found that the paper-based nature of the aid meant it was not
the organizations they were employed in. This was demonstrated used prominently by health professionals [27] and could
concretely by Heifetz and Lunsky [36], who developed passports therefore be replaced by more appropriate digital solutions.
for 3 institutions within the same catchment area. Each Health Diaries
institution requested a tool that differed in size (wallet size vs Lennox et al [30,32] and Turk et al [33] described the
1 full-page, double-sided tool vs 4 pages) and visual appearance development of health care diaries to empower patients with
(plain written information vs pictures to complement text). ID to understand their needs better as they progress over time.
However, all formats summarized information on the same Once again, all stakeholders were responsible for maintaining
aspects, including the patient’s medical history, baseline the document, meaning that observations on the patient’s
behaviors (eg, potential triggers, communication methods, or well-being could be recorded by health professionals, support
contingency plans for when the patient becomes agitated), and workers, family members, or the individual with ID. The
the emergency contact details of support workers and family approach of Turk et al [33] separated the diary into sections
members. based on the common conditions experienced by people with
Brodrick et al [34] and Bell [35] encapsulated similar details in ID, ranging from everyday ailments to more complex disorders
their double-sided and 3-page patient passports, respectively. such as epilepsy. There was also space dedicated to the
Nevertheless, they used color to demonstrate the most relevant treatments being received by the individual as well as advice
aspects required in a critical situation. For example, the medical on how to live a healthy lifestyle.
needs of the patient (eg, existing conditions and allergies) were The diary of Lennox et al [30,32] was significantly more
prioritized by both sets of authors, meaning this information substantial in that it contained segments on how to improve
was coded in red to signify its importance. Further information, communication during the consultation, in addition to those
such as the patient’s environment or support needs—those focusing on recording health information. These segments were
deemed to be relevant but not critical to the patient’s care—was aimed at both the health professional and the individual with
coded in more neutral colors such as amber and green. ID and included a patient passport, general strategies that
Raemy and Paignon [40] recognized that passports could only practitioners may use to improve the quality of care being
be effective if they accompany patients throughout the health provided, and tips for the patient on how to prepare for a
care system, a process that may be difficult to achieve using consultation, along with several resources to support them during
physical resources. Consequently, they developed a digital this process, such as picture symbols and pain recording tools.
Consequently, the health professional’s knowledge of the
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patient’s communication or treatment preferences and specific presented, thus ensuring that the questionnaire is tailored to
health needs should be notably increased. their own health care needs. The app should also be
customizable to account for the patient’s accessibility profile
Easy Read
and may be combined with other AAC strategies, such as patient
Dodd and Brunker [28] and Chinn [41] used easy-read passports, to increase the quality of care being provided [39].
documents to support patients with ID in understanding medical
conditions or symptoms. Easy read is the term given to Extracting symptoms from patients with ID before the
information resources that have been specifically adapted to consultation may have multiple advantages. The results may be
suit the complex needs of people with ID. This is primarily used as a referent by the patient when presenting their views to
achieved through the implementation of short, jargon-free health professionals; time constraints may be reduced with the
sentences supplemented with identifiable imagery. practitioner able to build upon preselected information; and
finally, there may be increased exposure to commonly
In the study of Dodd and Brunker [28], flashcards of various overshadowed conditions [37-39]. However, without a concrete
body parts, types and intensities of pain, and periods of time evaluation (which includes the involvement of target
were issued to patients with ID to increase the accuracy of the stakeholders), such benefits may be speculative, with the lessons
symptoms being described. The approach by Chinn [41] was disseminated by Gibson et al likely to change as further studies
different in that she directed medical professionals toward are carried out.
existing easy-read resources on clinical conditions and
monitored whether these resources had a direct impact on Communication Modalities
communication throughout a consultation. The documents In total, 67% (10/15) of studies, including the studies by Dodd
included an accessible summary of the effects and potential and Brunker [28], Lennox et al [29,30,32], Bell and Cameron
treatments of a condition. Consequently, they were used as a [31], Heifetz and Lunsky [36], Gibson et al [37-39], and Chinn
form of support during situations where a patient could not [41], described their implemented technologies well enough for
understand what the practitioner was conveying or was opposed the authors to determine the range of communication modalities
to the course of treatment being offered. Despite the documents employed.
being publicly available before the commencement of the study,
many of the GPs were largely unfamiliar with such resources, Imagery
thus potentially limiting their impact on consultations. This The bulk of the articles discussed the importance of imagery in
contrasted with the more specialized health care professionals supporting patients with ID to understand and communicate
(ID nurses) who regularly used, and were involved in the about their symptoms. Nevertheless, the depth and context of
development of, easy-read resources [41]. the use of medical images differed. For example, Bell and
Cameron’s [31] application of Talking Mats resulted in a patient
Talking Mats with mild ID providing information on their psychological health
Bell and Cameron [31] identified Talking Mats as a potential via the development of a pictorial framework. This, therefore
tool for supporting a patient with mild ID in discerning aspects broke the reliance on disseminating information through speech,
of their mental health—a process that they were finding difficult with the individual only being required to elaborate on those
to overcome using traditional consultation methods. Talking selections that were unclear or of particular importance to their
Mats is a communication aid that primarily relies on images to diagnosis. The visual feedback offered by the mat also enabled
form a concrete representation of an individual’s views. A visual the patient to reflect on and refine their selections, thus
scale was first placed at the top of a physical mat. The discussion increasing the quality and quantity of information provided.
was then broken down into manageable topics, and for each
topic, the individual should place an image that encapsulates Lennox et al [30,32] and Dodd and Brunker’s [28] use of
their opinion under the appropriate section of the visual scale. imagery was less extensive in that their resources enhanced an
Consequently, the aid is particularly effective for individuals individual’s communicative abilities instead of primarily
who lack the social skills to converse with authoritative figures, replacing them. In both cases, this involved developing colorful
as it lifts the burden of direct interactions [31]. In addition, pictures to support a patient with ID in expressing pain
Talking Mats may provide a voice for those who are unable to symptoms, including its site, severity, [28,30,32], intensity, and
communicate verbally, thus increasing their participation in duration [28]. Heifetz and Lunsky [36] also found it beneficial
decisions regarding their care. to include a photograph of the patient in any resources used, to
give practitioners a reference of how they should look while
High-Tech Aids healthy.
Only 1 set of authors (Gibson et al [37-39]) explored the Finally, the imagery employment of Chinn [41] and Gibson et
development of high-tech aids to support patients with mild ID al [37-39] was aimed at enhancing patients’ understanding of
when communicating with medical professionals. They proposed relevant medical information. In the study by Chinn [41], health
a digital questionnaire based on the most common medical professionals used easy-read documents at times when a patient
conditions experienced by people with ID. Each question should was unable to understand what was being conveyed or disagreed
be presented using the easy-read format discussed above to with the course of treatment proposed. These documents
increase the probability of users selecting the symptoms they contained information on the manifestation, effects, and possible
are experiencing. In addition, any information extracted from treatments of a condition and were made more accessible to the
the patient should be used to influence the future questions ID population by introducing imagery. Therefore, the ability of

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patients to be involved in decisions regarding their care should down into manageable steps while building an overall picture
have increased. Gibson et al [37-39] applied a similar strategy of the patient’s health care needs.
during the design of a clinical AAC tablet app, with images
Training
being used to supplement the patients’ understanding of the
symptoms presented as part of a medical questionnaire. In Bell also suggested that health care professionals remain
addition, symbols were used to indicate the functionality of the undereducated on the communication strategies employed by
buttons embedded in the app’s user interface, albeit varying patients with ID [35]. Consequently, she called for the
degrees of success [37,38]. enhancement of existing training programs to include
information on how to effectively target a range of
Despite their reliance on imagery throughout the technologies communication modalities instead of just using speech. This
implemented, none of the authors discussed the design decisions included basic signing systems such as Makaton [54,56], in
taken during the development of such resources. Furthermore, addition to simplified language and imagery.
none of the image sets were made publicly available, which
impacts the ability of researchers to reuse them or indeed create Evaluation and Impact of the Technologies
their own. Lennox et al [30] also noted that images could be In this section, we analyze the evaluation techniques employed
expensive and time-consuming to produce, and this could be a in the identified studies. The perceived impact of the
problem considering that a one-size-fits-all approach is unlikely technologies that emerged as a result of these evaluations will
to be effective for the ID population [37-39]. For example, some also be discussed.
patients may already use Makaton symbols [54] in their
everyday lives, and therefore expect a similar style of image to Qualitative Evaluations
be employed, whereas others might find realistic photographs Most studies primarily used qualitative methods to evaluate the
to be more relatable. effect of their technologies on current practice; this included
interviews, focus groups, and questionnaires [28-31,34-36,40],
Text and Speech the analysis of a reflective journal [35], posttask walkthroughs
In total, 5 studies (Lennox et al [30], Gibson et al [37-39], and [37,38], and conversational analysis of the interactions between
Chinn [41]) indicated that written information, enhanced by health professionals and patients with ID [41].
identifiable imagery, provided patients with an accessible means
of two-way communication. Gibson et al [37-39] went one step Interviews, Focus Groups, and Questionnaires
further and suggested that the playback of textual information The CHAP
should also be incorporated, where possible, to ensure illiterate Lennox et al [29] initially assessed the benefits of their CHAP,
or semiliterate users are not disadvantaged in any way. which included a checklist of preventive activities, a synopsis
Therefore, targeting a range of modalities ensures that of the literature on the current health trends of the ID population,
information is presented in a variety of different manners, with and a health record audit tool, by issuing a self-evaluation form
the individual able to use the form that makes the most sense to the practitioners involved in the study. Of the 45 GPs who
to them in each scenario. For example, a patient with ID may agreed to participate, only 15 (33.33%) completed all the study
prefer to use images when receiving information but also has components. This, combined with the lack of involvement of
the option to fall back on the text when a particular image is the 38 patients with ID in the intervention evaluation phase,
unclear. significantly restricts the strengths of the conclusions made, as
While developing textual information, Chinn [41] and Gibson highlighted by the fact that only descriptive results were
et al [37-39] emphasized the importance of following accessible reported. In terms of effectiveness, the GPs reported that all
language guidelines, such as National Health Service England’s interventions were beneficial in assisting their provision of care.
[55]. This included the use of plain and simple sentences that Nevertheless, the synopsis of the literature was most productive
focused on solitary ideas. However, Gibson et al [38] also in improving their knowledge of the health demographics of
recognized that some complex terminology, such as medication people with ID and was considered the most practical to use
brand names, was crucial to patient comprehension, meaning [29]. The checklist was most likely to raise awareness of the
it is important to develop such resources in conjunction with health needs of the patient and therefore prompted the greatest
target stakeholders to ensure their needs are met. amount of action that may not have been carried out otherwise.
Communication was reported to have increased between carers,
When presenting questions to patients with mild ID, different hospitals, and specialists, as were consultation times, although
strategies were employed depending on the context of the no quantitative measures were carried out to confirm this.
consultation and the technologies used. For example, Bell and
Cameron [31] primarily presented open-ended questions when Ask it Health Diary
using Talking Mats to establish the factors having a negative Lennox et al [30] employed a similar evaluation form to
impact on the psychological health of a patient with ID. They determine the appropriateness of an educational session that
felt that open-ended questions could improve the quality and preceded the implementation of a health advocacy diary. The
depth of information being extracted, although they recognized finer details of the form were not disclosed, yet the feedback
that the ID population might have greater difficulty in indicated that the session was useful in reinforcing the
constructing responses to them. In contrast, Gibson et al [37-39] responsibilities of both the patient and the health professional.
used closed questions that focused on a narrow range of medical In addition, the session also introduced the steps involved in
symptoms, thus enabling them to break the consultation process becoming an effective advocate. A short pilot study was
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conducted with the following 2 groups to evaluate the health A total of 18 semistructured interviews were conducted on the
diary: (1) 19 parents of adults with ID who used a phone with a variety of stakeholders, including hospital clinical
nongovernmental support service and (2) 7 people with ID who staff, community health and ID service providers,
used a nongovernmental accommodation service. The community-based health care coordinators, and 1 parent.
participants took part in the educational sessions mentioned Participants with ID were not included in this stage, as the focus
above and were then issued with the health diary. Next, they of the interviews was on the implementation of the passports
were required to familiarize themselves with the tool for 2 weeks rather than their use. Instead, the ID population’s views were
before completing an interview on the phone or in person, the extracted using a questionnaire, along with support workers and
protocol of which was not described. The qualitative data family members, to determine the fit and user-friendliness of
indicated that the diary improved the advocacy skills of the passport and its potential benefits. Both closed- and
two-thirds of the participants and improved their relationship open-ended questions were used to achieve this.
with the GP in 50% of cases. The results were also used to
Overall, 75% (21/28) of the participants involved in the
improve the technology before a more thorough evaluation was
questionnaire felt that the tool provided health care professionals
conducted in [32].
with relevant background information on the patient. In total,
Talking Mats 65% (18/28) suggested that such an approach can assist
Bell and Cameron [31] conducted 2 separate interviews to practitioners in carrying out reasonable adjustments to their
validate the health information extracted from a patient with consultation methods, with 79% (18/28) recognizing an
mild ID using Talking Mats. The patient’s concerns extracted improvement in communication between all stakeholders
during these interviews were collated into a single document, involved in a consultation. Consequently, the tool has the
with arrows being included to show how they had changed. potential to support practitioners in conducting better-informed
This information was then passed on to the individual’s support health care decisions. Nevertheless, these results may be
worker to ensure that actionable change was carried out to speculative as only 3 of the participants who completed the
improve their mental health. Bell and Cameron [31] found that questionnaire had ID, 25 did not have ID, and 82% (23/28) had
the Talking Mats framework made it possible to “extend the no experience in using the aid within a health care context. The
use of therapies that rely heavily on verbal communication to interviews also highlighted the variable degree to which
those people who not only find verbal communication difficult passports were adopted across each institution. Strong leadership
in a general sense but also in a specific situational sense.” Visual in monitoring and educating professionals on using tools has
feedback, along with the open-ended questions presented, may been reported as increasing community awareness and buy-in
also increase the depth and quality of the information being [36].
extracted. Brodrick et al [34] conducted a short pilot study of a 1-page
Easy-Read Communication Cards patient passport across 2 sites in England in October 2009.
Residential managers from each service were trained using
Dodd and Brunker [28] issued a questionnaire at the start of
passports before introducing the aid to frontline care staff.
their project to determine the health advocacy skills of 10
During 1 month, 150 passports were produced, with both the
patients with ID. After 6 months of using easy-read
researchers and residential managers remaining on hand to
communication cards and participating in the accompanying
provide additional training and support. Quality checks were
training sessions, participants were required to redo the
carried out on these resources, and a final round of focus groups
questionnaire to determine if their skills had improved. Brief
was conducted at the end of the pilot phase to obtain feedback
multiple-choice questionnaires were also completed by the
from the health care staff. Nonetheless, the components being
participants, GPs, and key workers each time a participant
reviewed throughout the quality checks and the tasks employed
became ill or was in pain and visited their doctor. In total, 3
in the focus groups were not reported. The potential benefits of
follow-up evaluation cards were completed by the participants
the passport were similar to those reported by Heifetz and
involved, meaning that the authors were only able to provide
Lunsky [36] in that it provided staff with the necessary
tenuous remarks regarding the feedback received [28]. The
information to deliver person-centered care. Passports also
benefits reported included an increase in knowledge on
increased the continuity of care as patients moved across
recognizing the signs of being unwell and what to do when ill,
departments while promoting collaboration between health care
an increase in two-way communication using the pictorial aids
providers. However, their initial quality was extremely variable
issued, and an increase in the ability of the patients to be
and only improved once extra training and support were
involved in the decisions regarding their care. Nevertheless,
provided, along with passports deemed to be of high caliber.
there was some variance in the results extracted, with only those
participants who used the aid regularly with their support worker Reflexive Journal Analysis
or doctor demonstrating increased retention of health care Bell [35] used multiple methods to evaluate their version of a
information. patient’s passport. A variety of perspectives were extracted,
Patient Passports thus improving the strengths of the findings obtained via data
triangulation. First, 12 family caregivers and health and social
Heifetz and Lunsky [36] also used both questionnaires and
care staff participated in a series of semistructured interviews
interviews to evaluate patient passports across 3 institutions in
to determine their experiences using the passport. In addition,
Canada. Their descriptions of the protocols employed were
a focus group involving 8 adults with ID was conducted, with
more complete, thus increasing the replicability of their findings.

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emphasis being placed on aspects that had, or had not, helped Ask It Health Diary and CHAP
them feel comfortable in a hospital context. Nevertheless, only Lennox et al [32] followed on from their earlier studies [29,30]
1 participant had experience using the passport employed, which to perform a clustered RCT with people with ID living in private
potentially limits the impact of the findings from this part of dwellings throughout the Greater Brisbane area of Australia.
the study. Finally, Bell [35] observed and recorded notes on They examined the effect of their interventions using a 2×2
passports being implemented in practice, which was analyzed factorial design, with the units of randomization being assigned
using a reflexive process. As with Heifetz and Lunsky [36] and to clusters of participants interlinked by sharing a GP practice.
Brodrick et al [34], increased collaboration and continuity of These clusters were organized into 4 blocks according to their
care were recognized across multiple health care providers. size; 1 cluster from each block was then assigned to a factorial
Conversational Analysis group by a statistician using computer-generated random
numbers. The effects of the interventions on clinical activity
Chinn [41] recorded the interactions between health
(eg, health promotion and disease prevention) were measured
professionals and patients with ID to determine the effects
for 12 months and compared with the same activities in the
easy-read information sheets had on consultations. A total of
preceding year.
41 recordings were made, 32 of which involved a patient with
ID attending a health check with primary care clinicians and 9 The CHAP had a statistically significant effect on health
with specialist ID nurses. Conversational analysis was then used promotion, disease prevention, and case finding activities across
to examine the interactional micropractices that framed literacy a number of components. Outcomes related to sensory systems
events involving easy-read resources. Reflective interviews (eg, hearing and vision tests) increased, as did all 5 of the
were also conducted with a subset of the participants (9 patients immunizations highlighted by the program. There was also a
and 9 health professionals) to determine the reasons behind substantial increase in the number of patients who underwent
certain actions. The study by Chinn [41] was carried out in the weight measurements. There were no significant changes in the
context of annual health checks to ensure the identification of measured outcomes of the group assigned to the Ask It health
appropriate participants. However, this environment restricted diary alone, with only modest effects being noted on epilepsy
the opportunity for health professionals to introduce easy-read review and constipation investigation. This contrasts with the
information sheets, as highlighted by their visibility in just 22% findings of [30], which suggested that the health diary could
(7/32) of the appointments recorded. The ID nurses involved lead to an improvement in the patient’s health advocacy skills,
were also far more likely to use the information sheets than the and as such, increase the number of conditions being identified.
GPs (because of their specialized skills) despite Chinn’s best Lennox et al suggested that the trial may have been too short
effort to educate the participants on the benefits of such to recognize the true benefits of the diary [32].
resources. When used, the easy-read information sheets
Notes-Based Prompt
effectively supported the medical professional to offer
unsolicited advice, particularly when patients were resistant to Jones and Kerr [27] also used an RCT to evaluate their
change. This was because of the aid reinforcing the practitioner’s note-based prompt, a tool that was similar to the CHAP program
views and reminding them of important aspects to forward on described above. A total of 5 primary care practices participated
to the patient. in the study and identified 88 patients with ID who were
randomly allocated to the active or control group. The active
Posttask Walkthrough group had access to the prompt immediately, whereas the control
Gibson et al conducted posttask walkthroughs with 4 experts group endured an embargo for 6 months. After the initial
in ID to ensure that the technology probe of a clinical AAC 6-month period, data were collected on a wide range of variables
tablet was accessible to the target population [37,38]. The related to health promotion, consultation patterns, and physical,
experts were required to select various symptoms within the psychological, and social well-being. This was compared with
probe before answering questions on their experience with the information on consultation patterns during the previous 4 years
app. Particular attention was paid to any area of interest noted as well as life-long records of general health issues. In contrast
by the researchers during the experts’ interactions. The benefits to Lennox et al [32], no significant differences were observed
of the app listed by the participants included an increase in in consultation patterns (location, nature, and outcome) or health
communication via the use of an accessible list of symptoms promotion. Jones and Kerr [27] attributed this to the paper-based
as a referent, a rise in awareness of the conditions commonly nature of the aid, with medical professionals preferring to use
overshadowed by practitioners, and the mitigation of time digital resources. In addition, they suggested that without
constraints by providing information to the GP before the statutory regulations and considering the current workloads
consultation. Nonetheless, such benefits may be premature, with experienced by GPs, screening opportunities are unlikely to be
Gibson et al revealing their intentions to extract the views of carried out on an opportunistic basis.
health professionals and adults with mild ID during future work
Hand-Held Health Record or Diary
before carrying out a pilot study within the clinical environment
[37,38]. Finally, Turk et al employed an RCT to evaluate their hand-held
health diary [33]. A total of 40 primary care practices were
Quantitative Evaluations randomized to the control or implementation groups, with 163
Only 3 studies [27,32,33] used quantitative methods, via patients with ID completing all stages of the trial. Initial
randomized controlled trials (RCTs), to determine the effect of interviews were carried out with patients and caregivers to
their interventions on current practice. determine aspects such as basic background information,

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knowledge of health problems and medical terminology, an active role in their care. This goes against Chinn’s [22] view
information on GP visits in the past year, and whether specific that the best outcomes for consultations occur when both parties
health checks were up to date. Follow-up interviews were then receive support to enhance communication.
conducted 1 year after the study’s start date and were identical
In contrast, the interventions described by Dodd and Brunker
to the initial interviews, except that additional questions were
[28], Lennox et al [30], Gibson et al [37-39], and Chinn [41]
asked about the individuals’ experience with the health diary
aimed to facilitate improved two-way communication. Images
where appropriate. Upon completion of the study, a nurse
of symptoms and body parts were used in multiple ways by
researcher accessed the patients’ medical records from a year
Dodd and Brunker [28], Lennox et al [30], and Bell and
before the initial interviews up to the time of the follow-up
Cameron [35] to promote discussion on such topics. Easy-read
interview to measure a number of health-related outcomes.
resources were also embedded in consultations to enhance
Similar to Lennox et al [32], no statistically significant outcomes patients with mild ID knowledge of certain conditions or
were achieved by the hand-held health diary [33]. However, procedures, thus improving their ability to provide informed
there were some improvements concerning the number of GP consent [41]. Finally, Gibson et al [37-39] investigated the use
visits per year (an increase of 1.4), the ability of patients to of digital questionnaires to produce an easy-read summary of
report health-related problems, and their ability to recognize the main symptoms experienced by an individual with ID. Both
medical jargon. The qualitative data extracted during the the patient and the medical professional may then build upon
follow-up interviews indicated that only 18% (10/56) of the this summary throughout the consultation. Ensuring that all
patients with ID involved in the intervention group used the stakeholders share a mutual understanding of the clinical
diary, and 39% (22/56) of caregivers used it on behalf of the information being discussed is likely to lead to more accurate
patient. This may partially explain the limited impact that the diagnoses being carried out. As such, the authors agree with
diary had on consultation patterns, the impact that was attributed Chinn [22] that greater emphasis should be placed on developing
to a high turnover in support staff, and other factors such as and evaluating two-way communication aids.
carers forgetting it, being too busy, or being concerned about
Nonetheless, one-way communication aids, particularly patient
taking up the GPs’ time. Nevertheless, those who had used the
passports, still play a role in environments that are time-critical
diary generally expressed satisfaction with it and suggested that
(eg, accident and emergency) or difficult to navigate (eg,
it helped them know more about the patient’s health and was
large-scale hospitals, multiple wards) to ensure consistent care
useful during visits to the GP or hospital.
is administered [34,35]. However, Hemsley and Balandin [43]
Raemy and Paignon’s [40] evaluation phase is currently in recognized that overly long summaries of an individual’s needs
process; therefore, no concrete results have been reported. In might result in medical professionals ignoring such information,
addition, the study by Gibson et al [39] only focused on the with the patient having to repeat themselves on multiple
extraction of design requirements, meaning no evaluation was occasions. This could, therefore, explain the change in focus
conducted. toward 1-page patient passports [34-36].
Systemic Change
Discussion
The bulk of the communication barriers discussed within our
Principal Findings review match the findings of Hemsley and Balandin [43].
Despite communication barriers being well recognized within However, not all may be alleviated by the simple introduction
the literature (eg, in the studies by Alborz et al [1], Krahn et al of AAC technologies and require much more systemic changes.
[2], Ali et al [3], Hanlon et al [5], and Hemsley and Balandin Hemsley and Balandin [43] noted that government and health
[43]), little is known about the use of technology to support the care agencies must do more to reduce the inequalities
exchange of information between patients with mild ID and experienced by patients with complex communication needs.
medical professionals. Our review therefore maps the literature An instance in which this is abundantly clear is Switzerland’s
within this domain while exposing potential gaps that may be failure to implement a national ID strategy, meaning that
addressed in future work. We identified only 15 studies focusing institutions lack the appropriate guidance and resources to treat
on the development and/or implementation of AAC devices, patients with ID effectively [36]. Therefore, additional services,
with most investigating one-way communication aids systems, and policies [43] must be developed on a national scale
[27,29,32-36,40]. Notes-based prompts (Jones and Kerr [27], to encourage improved person-centered care. Hemsley and
Lennox et al [29,32]) were statistically significant in increasing Balandin [43] highlighted various aspects that must be
the number of targeted checks performed by medical considered during this process: (1) increasing the knowledge
professionals in problematic areas, such as hearing difficulties of health care staff on effective communication strategies, (2)
[32]. Passports and health diaries (Turk et al [33], Brodrick et extending the time available to consult with patients with
al [34], Bell [35], Heifetz and Lunksy [36], and Raemy and complex communication needs, (3) increasing interagency
Paignon [40]) aimed to increase practitioners’ knowledge of collaboration to ensure patients are able to take the optimal
their patients’ medical and communication needs, thereby pathway through complex health systems, (4) clearly defining
facilitating reasonable adjustments and recognizing commonly the role of caregivers, and (5) increasing access to and
overshadowed conditions. However, these interventions centered encouraging the use of AAC devices within consultations. The
on the way medical professionals present information to their studies identified in our review also suggested that targeted
patients instead of empowering individuals with mild ID to take health checks [27,29] and the employment of specialized

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professionals to support frontline staff, such as ID nurses, could determine clinical advantages. Nevertheless, this study is a
have serious benefits for the well-being of the ID population. scoping review, not a systematic review, and therefore has some
Introducing statutory regulations should also help ensure that limitations. First, the searches were restricted to 3 primary
interventions are used within the practice—a problem identified databases, meaning that relevant literature may have been
by some of the reviewed studies [27,35]. omitted. Second, only articles published in English were
considered, which may explain why the identified studies were
Finally, the health inequalities experienced by patients with
carried out by members of the OECD. There is also scope to
milder ID may be exacerbated because of the hidden nature of
explore the use of AAC devices to improve the health of other
their disability [27]. Their symptoms were not as prominent as
populations, such as those with more severe ID [58] or children
those of moderate or severe ID, indicating that their diagnosis
[59-61].
could be delayed or missed entirely. As such, medical
professionals may continue to employ inappropriate consultation Conclusions
techniques because of their ignorance of their patients’ Communication aids have the potential to provide immediate
additional needs. Consequently, practices should employ ID health benefits to people with ID in the absence of wholesale
registers [57] to ensure that medical professionals are aware of changes being carried out in organizational procedures, such as
their need to conduct reasonable adjustments. In addition, greater undergraduate training. Therefore, this review summarizes the
emphasis must be placed on strategies to identify people with use of low- and high-tech communication aids by adults with
mild ID. mild ID in the context of primary and secondary care. The
Study Limitations and Recommendations for Future advantages of the aids used included assisting medical
Work professionals in making reasonable adjustments to their
consultation methods by providing them with personal
Our review is the first to explore the types of AAC technologies information on the patient, increasing two-way communication,
available to patients with mild ID during clinical consultations. and enhancing practitioners’ awareness of the health trends
Despite the abundance of evidence detailing the health experienced by people with ID. Nevertheless, there were some
inequalities experienced by patients with ID, we highlight the deficiencies in the methods used by the identified studies that
limited extent of research being carried out in this area. Further limited the impact and generalizability of the conclusions. Areas
investigations into the potential of two-way communication that require further consideration include using quantitative
aids in increasing the health advocacy skills of this population methods during RCTs to determine the true benefits of the aids
must be conducted to emphasize the use of high-tech aids, as in a clinical context and additional investigations regarding
they can be adapted to the working routines of medical high-tech two-way communication aids.
professionals. Quantitative measures must also be employed to
Acknowledgments
This research was funded by the University of Strathclyde’s Student Excellence Awards scheme.
Authors' Contributions
RCG was the principal author of this study. He developed and carried out a database search strategy to identify relevant articles
for review. In conjunction with MMB, RCG also developed the data-charting form and independently applied this form to the
collected studies. Finally, RCG created the initial thematic framework used in the analysis and applied the updated framework
to all relevant studies. MMB reviewed potentially relevant articles based on the inclusion criteria. As stated, he also jointly
developed the data-charting form and applied it independently. MMB also reviewed the initial thematic framework applied to a
subset of the collected articles and confirmed the addition of new codes to the remaining articles. MDD settled disagreements
between the other authors during the initial search and data-charting stages. He also reviewed the initial thematic framework
applied to a subset of the collected articles and confirmed the addition of new codes to the remaining articles.
Conflicts of Interest
None declared.
Multimedia Appendix 1
In-depth overview of identified studies.
[DOCX File , 48 KB-Multimedia Appendix 1]
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Abbreviations
AAC: alternative and augmentative communication
CHAP: Comprehensive Health Assessment Program
GP: general practitioner
ID: intellectual disability
OECD: Organization for Economic Cooperation and Development
PRISMA: Preferred Reporting Items for Systematic Reviews and Meta-Analyses
RCT: randomized controlled trial

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Edited by G Eysenbach; submitted 06.05.20; peer-reviewed by L Vereenooghe, A Kora, F Palmieri; comments to author 19.07.20;
revised version received 31.08.20; accepted 02.04.21; published 09.06.21
Please cite as:
Gibson RC, Bouamrane MM, Dunlop MD
Alternative and Augmentative Communication Technologies for Supporting Adults With Mild Intellectual Disabilities During Clinical
Consultations: Scoping Review
JMIR Rehabil Assist Technol 2021;8(2):e19925
URL: https://rehab.jmir.org/2021/2/e19925
doi: 10.2196/19925
PMID:
©Ryan Colin Gibson, Matt-Mouley Bouamrane, Mark D Dunlop. Originally published in JMIR Rehabilitation and Assistive
Technology (https://rehab.jmir.org), 09.06.2021. This is an open-access article distributed under the terms of the Creative Commons
Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction
in any medium, provided the original work, first published in JMIR Rehabilitation and Assistive Technology, is properly cited.
The complete bibliographic information, a link to the original publication on https://rehab.jmir.org/, as well as this copyright and
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Alternative and Augmentative Communication Technologies for

(JMIR Rehabil Assist Technol 2021;8(2):e19925) doi: 10.2196/19925

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Textbox 1. Search queries and search terms.

• ((“communication”[MeSH Terms] OR “communication”[All Fields] OR (“personal”[All Fields] AND “communication”[All Fields]) OR

• ((“communication”[MeSH Terms] OR “communication”[All Fields]) AND (((“learning”[MeSH Terms] OR “learning”[All Fields]) OR

ACM Digital Library

• ((“intellectual” AND disability”) AND communication) AND consultations

• (pictures images graphics “clinical” disabilities) AND recordAbstract:(+intellectual +learning)

• ((“intellectual” AND “disability”) AND “communication”) AND “consultations”

• (“Talking” AND “Mats”) AND (“learning” AND “disabilities”) AND “clinical”

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assessed using the following three characteristics based on the

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Textbox 2. Inclusion criteria for relevant articles.

• The review was not limited to comparator studies.

• Primary studies only were considered relevant in this review.

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Textbox 3. Thematic framework.

Evaluation and impact

the results of the framework-based thematic analysis. An

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Table 1. Short overview of the identified studies.

Jones and Kerr [27] (1997); paper-based ✓b ✓ ✓ ✓

Lennox et al [29] (2001); CHAPc ✓ ✓ ✓ ✓

Lennox et al [30] (2004); Ask It Health ✓ ✓ ✓ ✓ ✓

Furthermore, all studies identified during the data collection

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