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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.
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.
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.
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.
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.
People with intellectual disabilities (IDs) are consistently subjected to health inequalities [
Previous literature has suggested that many of the inequalities experienced by patients with ID are preventable, particularly the breakdown in communication with health professionals [
However, medical professionals frequently report that they are undertrained on the health and accessibility needs of people with ID [
Nevertheless, medical staff are currently overworked [
Technology has the potential to provide such support as it has been shown to enhance the lives of people with cognitive, intellectual, or physical disabilities [
Throughout this paper, we refer to the term
This review aims to identify and synthesize a range of technologies and modalities used to promote communication between patients with mild ID and health professionals. Consequently, the research question underpinning this review is, “What technologies are being used to support adults with mild ID to communicate more effectively with medical practitioners?
In addition to these research questions, the scoping review has the following objectives:
Subobjective 1: determine how the identified aids were being used by patients with mild ID and medical professionals
Subobjective 2: determine how the benefits of the aids were evaluated
Our work differs from that of Chinn [
Arksey and O’Malley [
Research question formulation (
Identification of relevant studies (
Study selection (
Charting the data (
Collating, summarizing, and reporting the results (
To conduct a holistic search that included technological, sociotechnical, and disability-focused communication studies, 3 databases were queried (PubMed, ACM Digital Library, and Google Scholar) using the terms shown in
PubMed was selected because of its focus on medical studies, including those that discuss the implementation of interventions. Each of the unique articles retrieved from PubMed had their titles and abstracts screened by RCG against the inclusion and exclusion criteria described in the following subsection. Potentially relevant articles were then read in their entirety to identify those that adhered to the selection criteria, with more obscure articles being analyzed by MMB before their inclusion or omission. The areas of conflict between the first and second authors were resolved by MDD. Searches across the 3 databases resulted in 5 articles that were reviewed by RCG and MMB, of which 2 were also reviewed by MDD.
ACM was identified because of its focus on technology, particularly articles centering on the development of AAC aids. In addition, the literature returned by ACM does not overlap with that identified by PubMed, which increases the comprehensiveness of the search. Relevant articles were chosen using the same process as described above.
Finally, Google Scholar was selected as it is often used to supplement evidence searches by returning relevant articles cataloged in databases beyond those originally queried [
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]
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)
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
allintitle: “clinical” AND “disabilities” AND “pictures” OR “images” OR “graphics” OR “intellectual” OR “learning”
PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) flowchart of this scoping review.
The review was restricted to literature that discussed the use of technology to promote communication between patients with mild IDs and health professionals.
Articles may also have been excluded if they were deemed to be of low quality by any research team member. This was assessed using the following three characteristics based on the aspects identified by Alborz et al [
N size is often used as a proxy for the quality of a study; however, it was not considered appropriate for article exclusion because of our interest in the development of technologies and their implementation.
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 [
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.
The review was not limited to comparator studies.
Qualitative and quantitative data reporting the effects of communication aids and modalities on clinical consultations involving adult patients with mild intellectual disability.
Primary studies only were considered relevant in this review.
As shown in
RCG and MMB jointly developed a data-charting form to extract relevant information from the identified studies. The characteristics within this form were similar to those proposed by Arksey and O’Malley [
A deductive, framework-based analysis [
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.
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.
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.
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.
In this section, we first present the general characteristics of the identified studies (publication and participants) before discussing the results of the framework-based thematic analysis. An in-depth description of the selected studies may be found in
Short overview of the identified studies.
Study (Author [year]; assessment tool) | Complexity | Modality | Participants | Evaluation | |||||
|
High-tech | Low-tech | Text | Imagery | Speech | Mainly people with IDa | Mainly other populations | Qualitative | Quantitative |
Jones and Kerr [ |
|
✓b | ✓ |
|
|
✓ |
|
|
✓ |
Dodd and Brunker [ |
|
✓ | ✓ | ✓ |
|
✓ |
|
✓ |
|
Lennox et al [ |
|
✓ | ✓ |
|
|
✓ |
|
✓ |
|
Lennox et al [ |
|
✓ | ✓ | ✓ |
|
|
✓ | ✓ |
|
Bell and Cameron [ |
|
✓ | ✓ | ✓ |
|
✓ |
|
✓ |
|
Lennox et al [ |
|
✓ | ✓ | ✓ |
|
✓ |
|
|
✓ |
Turk et al [ |
|
✓ | ✓ |
|
|
✓ |
|
|
✓ |
Brodrick et al [ |
|
✓ | ✓ |
|
|
|
✓ | ✓ |
|
Bell [ |
|
✓ | ✓ |
|
|
✓ |
|
✓ |
|
Heifetz and Lunsky [ |
|
✓ | ✓ |
|
|
|
✓ | ✓ |
|
Gibson et al [ |
✓ |
|
✓ | ✓ | ✓ |
|
✓ | ✓ |
|
Gibson et al [ |
✓ |
|
✓ | ✓ | ✓ |
|
✓ | ✓ |
|
Gibson et al [ |
✓ |
|
✓ | ✓ | ✓ |
|
✓ | ✓ |
|
Raemy and Pignon [ |
|
✓ | ✓ |
|
|
|
✓ | ✓ |
|
Chinn [ |
|
✓ | ✓ | ✓ |
|
✓ |
|
✓ |
|
aID: intellectual disability.
bCheckmark indicates the presence of that characteristic within the study.
cCHAP: Comprehensive Health Assessment Program.
Of the 15 articles that met our inclusion criteria, 9 (60%) were retrieved from PubMed [
Furthermore, all studies identified during the data collection phase were carried out in countries that are members of the Organization for Economic Cooperation and Development (OECD), with most centering on the health care infrastructure of the United Kingdom [
In total, 6 of the articles described the design and development of an intervention to promote communication between adult patients with mild ID and health professionals [
Both Brodrick et al [
Finally, Gibson et al [
In contrast, participants with mild ID contributed highly to most studies focusing on the evaluation of an intervention [
Although people with ID were prevalent throughout the evaluations, only 4 of the articles offered concrete or partial statistics on the etiology of their participants’ disability [
Several studies performed qualitative investigations on the barriers and facilitators to effective communication between health professionals and patients with mild ID. Their findings primarily align with the literature (such as the studies by Alborz et al [
Both Raemy and Paignon [
Jones and Kerr [
In addition to the lack of guidance from national strategies, local health care infrastructure may impede collaboration between medical professionals treating patients with ID. Fragmentation of care was recognized by Bell [
In addition, Heifetz and Lunsky [
Dodd and Brunker [
As discussed previously, medical professionals tend not to be well educated on the health and communication needs of people with ID [
Due to the shortcomings of undergraduate medical courses [
There was some disagreement on the impact that external support may have on consultations involving adults with ID. Turk et al [
However, the described benefits are largely dependent on the level of involvement a support worker has in the patient’s life. For example, Gibson et al [
Lennox et al [
Two strategies were discussed that may assist practitioners in carrying out such adjustments. First, medical professionals should be given access to the personal characteristics of their patients, for example, their preferred method of communicating the terms
In this section, we analyze the various technologies used in the identified studies. To do so, we grouped these technologies into two main categories: low-tech communication aids and high-tech communication aids. We define a low-tech aid as a nonelectronic tool, external to an individual’s body, that assists the user in communicating a message to a relevant partner. In contrast, a high-tech aid is a complex electronic device that permits the storage and retrieval of messages, many of which are used during the formulation of speech output [
The bulk of the studies (Brodrick et al [
The passports implemented shared common features but were often tailored to meet the requirements and infrastructures of the organizations they were employed in. This was demonstrated concretely by Heifetz and Lunsky [
Brodrick et al [
Raemy and Paignon [
Lennox et al [
In addition to the CHAP, Lennox et al [
Lennox et al [
The diary of Lennox et al [
Dodd and Brunker [
In the study of Dodd and Brunker [
Bell and Cameron [
Only 1 set of authors (Gibson et al [
Extracting symptoms from patients with ID before the consultation may have multiple advantages. The results may be used as a referent by the patient when presenting their views to health professionals; time constraints may be reduced with the practitioner able to build upon preselected information; and finally, there may be increased exposure to commonly overshadowed conditions [
In total, 67% (10/15) of studies, including the studies by Dodd and Brunker [
The bulk of the articles discussed the importance of imagery in supporting patients with ID to understand and communicate about their symptoms. Nevertheless, the depth and context of the use of medical images differed. For example, Bell and Cameron’s [
Lennox et al [
Finally, the imagery employment of Chinn [
Despite their reliance on imagery throughout the technologies implemented, none of the authors discussed the design decisions taken during the development of such resources. Furthermore, none of the image sets were made publicly available, which impacts the ability of researchers to reuse them or indeed create their own. Lennox et al [
In total, 5 studies (Lennox et al [
While developing textual information, Chinn [
When presenting questions to patients with mild ID, different strategies were employed depending on the context of the consultation and the technologies used. For example, Bell and Cameron [
Bell also suggested that health care professionals remain undereducated on the communication strategies employed by patients with ID [
In this section, we analyze the evaluation techniques employed in the identified studies. The perceived impact of the technologies that emerged as a result of these evaluations will also be discussed.
Most studies primarily used qualitative methods to evaluate the effect of their technologies on current practice; this included interviews, focus groups, and questionnaires [
Lennox et al [
Lennox et al [
Bell and Cameron [
Dodd and Brunker [
Heifetz and Lunsky [
Overall, 75% (21/28) of the participants involved in the questionnaire felt that the tool provided health care professionals with relevant background information on the patient. In total, 65% (18/28) suggested that such an approach can assist practitioners in carrying out reasonable adjustments to their consultation methods, with 79% (18/28) recognizing an improvement in communication between all stakeholders involved in a consultation. Consequently, the tool has the potential to support practitioners in conducting better-informed health care decisions. Nevertheless, these results may be speculative as only 3 of the participants who completed the questionnaire had ID, 25 did not have ID, and 82% (23/28) had no experience in using the aid within a health care context. The interviews also highlighted the variable degree to which passports were adopted across each institution. Strong leadership in monitoring and educating professionals on using tools has been reported as increasing community awareness and buy-in [
Brodrick et al [
Bell [
Chinn [
Gibson et al conducted posttask walkthroughs with 4 experts in ID to ensure that the technology probe of a clinical AAC tablet was accessible to the target population [
Only 3 studies [
Lennox et al [
The CHAP had a statistically significant effect on health promotion, disease prevention, and case finding activities across a number of components. Outcomes related to sensory systems (eg, hearing and vision tests) increased, as did all 5 of the immunizations highlighted by the program. There was also a substantial increase in the number of patients who underwent weight measurements. There were no significant changes in the measured outcomes of the group assigned to the
Jones and Kerr [
Finally, Turk et al employed an RCT to evaluate their hand-held health diary [
Similar to Lennox et al [
Raemy and Paignon’s [
Despite communication barriers being well recognized within the literature (eg, in the studies by Alborz et al [
In contrast, the interventions described by Dodd and Brunker [
Nonetheless, one-way communication aids, particularly patient passports, still play a role in environments that are time-critical (eg, accident and emergency) or difficult to navigate (eg, large-scale hospitals, multiple wards) to ensure consistent care is administered [
The bulk of the communication barriers discussed within our review match the findings of Hemsley and Balandin [
Finally, the health inequalities experienced by patients with milder ID may be exacerbated because of the
Our review is the first to explore the types of AAC technologies available to patients with mild ID during clinical consultations. Despite the abundance of evidence detailing the health inequalities experienced by patients with ID, we highlight the limited extent of research being carried out in this area. Further investigations into the potential of two-way communication aids in increasing the health advocacy skills of this population must be conducted to emphasize the use of high-tech aids, as they can be adapted to the working routines of medical professionals. Quantitative measures must also be employed to determine clinical advantages. Nevertheless, this study is a scoping review, not a systematic review, and therefore has some limitations. First, the searches were restricted to 3 primary databases, meaning that relevant literature may have been omitted. Second, only articles published in English were considered, which may explain why the identified studies were carried out by members of the OECD. There is also scope to explore the use of AAC devices to improve the health of other populations, such as those with more severe ID [
Communication aids have the potential to provide immediate health benefits to people with ID in the absence of wholesale changes being carried out in organizational procedures, such as undergraduate training. Therefore, this review summarizes the use of low- and high-tech communication aids by adults with mild ID in the context of primary and secondary care. The advantages of the aids used included assisting medical professionals in making reasonable adjustments to their consultation methods by providing them with personal information on the patient, increasing two-way communication, and enhancing practitioners’ awareness of the health trends experienced by people with ID. Nevertheless, there were some deficiencies in the methods used by the identified studies that limited the impact and generalizability of the conclusions. Areas that require further consideration include using quantitative methods during RCTs to determine the true benefits of the aids in a clinical context and additional investigations regarding high-tech two-way communication aids.
In-depth overview of identified studies.
alternative and augmentative communication
Comprehensive Health Assessment Program
general practitioner
intellectual disability
Organization for Economic Cooperation and Development
Preferred Reporting Items for Systematic Reviews and Meta-Analyses
randomized controlled trial
This research was funded by the University of Strathclyde’s Student Excellence Awards scheme.
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.
None declared.