Research Request- Facilitated Communication Literature update

DOCUMENT 10

Research Request- Facilitated Communication Literature update

             FC document has progressed to Q&S to develop an agency position. Previous Brief                   research conducted 18 months ago. Updated literature search required.

Date 20/01/21

Requester(s) Jane redacted: s47F - personal (Assistant Director – TAB)

Researcher Jane redacted: s47F - personal priv (Research Team Leader)

Cleared

Contents

Facilitated Communication ………………………………………………………………………………………………….. 1

1. Search strategy …………………………………………………………………………………………………………… 2 1.1 Search string………………………………………………………………………………………………………… 2 1.2 Limiters ……………………………………………………………………………………………………………….. 2 1.3 Databases: …………………………………………………………………………………………………………… 3 1.4 Data extraction…………………………………………………………………………………………………….. 3 1.5 Number of references: ………………………………………………………………………………………….. 3

2. Findings ……………………………………………………………………………………………………………………… 5 Table 1: General study information …………………………………………………………………………………… 5 Table 2. Methods and Characteristics of included studies ……………………………………………………. 7 Table 3. Results/author conclusions ………………………………………………………………………………… 11 Table 4. Quality assessment checklists/quality of evidence ………………………………………………… 15

3. Summary ………………………………………………………………………………………………………………….. 16

4. References ……………………………………………………………………………………………………………….. 17

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This literature search and summary of evidence was conducted by Dr Jane Scheetz (Research Team Leader – Technical Advisory Branch). In an academic setting the paper selection process is conducted by two reviewers independently of each other (known as double screening). This approach is resource intensive, however, has been shown to lead to less studies being missing. Whilst single screening is not equivalent to double screening, it is still considered an appropriate methodological approach in rapid reviews, as long as it is conducted by an experienced reviewer.

The program COVIDENCE was used to screen and assess studies for inclusion. Data were extracted and quality assessments made within the COVIDENCE application. The Critical Appraisal Skills Checklist (CASP) and the Joanna Briggs Institute (JBI) quality assessment tools were used to assess the trustworthiness, relevance and results of included studies.

1. Search strategy

1.1 Search string

Since Facilitated Communication is typically not a keyword indexed in the thesaurus of most databases, I chose to use the following terms as free-text phrases:

“Facilitated communication” OR “assisted typing” OR “supported typing”

AND

disabil* OR “people with disabil*” OR pwd OR “disabled people” OR disabilit* OR “people with disabilit*” OR “intellectual disabil*” OR autis* OR “autism spectrum disorder*” OR ASD OR “communication disorder*” OR “speech disorder*” OR “cerebral palsy”

Search terms such as ‘disability’, ‘autism spectrum disorder’ and ‘cerebral palsy’ were utilised to narrow the search results. These terms were chosen as facilitated communication is commonly utilised as an intervention in participants with these conditions.

1.2 Limiters

Type of publication: peer reviewed article

Year of publication: no restriction

Language: English

Publication type: Systematic review, meta-analysis, review or narrative synthesis

A systematic review of all published FC literature was published in 2018, therefore, the above search was re-run from 2017- onwards with no limitation on publication type. This was to enable us to identify any new research published since the last systematic review.

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1.3 Databases:

The following databases were searched: CINHAL, PsycInfo, Cochrane, Medline, Scopus and ProQuest.

1.4 Data extraction

Data was extracted for Author/s, Year, Title, Country, Study type, Aim, Search strategy, Inclusion criteria, population description, Total number of participants, Funding/conflict of interest, other methodological details, Summary of results, Risks/limitations, Author conclusions .

1.5 Number of references

Refer to PRISMA flow diagram.

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Figure 1: PRISMA flow diagram.

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2. Findings

Table 1: General study information

Study	Title	Country	Study Type	Aim of study
Jacobson, Mulick [1] (1995)	A History of Facilitated Communication: Science, Pseudoscience, and Antiscience Science Working Group on Facilitated Communication	United States	Literature Review	To attempt to identify a scientific history of FC
Hemsley, Bryant [2] (2018)	Systematic review of facilitated communication 2014 to 2018 finds no new evidence that messages delivered using facilitated communication are authored by the person with disability	Australia	Systematic Review	This study aimed to conduct a systematic review of the literature on FC published between 2014 and 2018 to inform the 2018 update of the 1995 American Speech-Language- Hearing Association Position Statement on FC.
Mostert [3] (2010)	Facilitated communication and its legitimacy- twenty-first century developments.	United States	Systematic Review	The purpose of this article is to provide an updated review on the status of research on FC efficacy since 2001
Roane, Kadey [4] (2019)	Evaluation of word recognition following typing produced through facilitated communication.	United States	Case study	To preliminarily assess a novel approach for assessing FC based on the logic that if the participant could not recognize typed words, then this pattern would suggest that any previously typed communication was not of her own production
Siegel and Zimnitzky [5] (1998)	Assessing ‘alternative’ therapies for communication disorders in children with autistic spectrum disorders: facilitated communication and auditory integration training.	United States	Literature Review	To help speech-language clinicians and audiologists assess the validity and utility of FC methods based on research that has been conducted.
Saloviita [6] (2018)	Does Linguistic Analysis Confirm the Validity of Facilitated Communication?	Finland	Systematic Review	Aim: To review linguistic studies claiming to validate FC Questions Research Question 1: What is the role given to message- passing tests in these studies?

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Study	Title	Country	Study Type	Aim of study
				Research Question 2: Do the studies abide by the methodological recommendations made by the ICI on the correct use of FC (ICI, 2010, 2012)? Research Question 3: How is the linguistic argument developed in these studies? Does the argumentation surpass the trap of logical circularity discussed above?
Schlosser, Balandin [7] (2014)	Facilitated communication and authorship: a systematic review.	United States	Systematic Review	To examine and synthesize the research evidence on who is authoring the messages generated through FC
Mostert [8] (2001)	Facilitated communication since 1995: a review of published studies.	United States	Systematic review	Aim: To synthesize FC studies appearing in the empirical literature since the last major reviews by Jacobson et al., (1995) and Simpson and Myles (1995). Questions 1. What are the characteristics of the FC studies published since 1995? 2. Overall, what is the nature of the evidence in these studies related to FC efficacy? 3. How legitimate are the claims of two studies using control procedures and claiming substantial evidence of FC efficacy?

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Table 2. Methods and Characteristics of included studies

Study	Search strategy	Inclusion criteria	Population description	Total number of participants	Funding/con flict of interest	Other methodological details
Jacobson, Mulick [1] (1995)	Not reported	Any study type which investigated FC, published in peer reviewed journal	The studies reviewed covered autism, cerebral palsy, or epilepsy in combination intellectual disability (moderate, severe or profound).	126 across 15 studies. Only 4 (3.1%) participants demonstrated accurate communication under blind conditions.	Not reported	Most studies used repeated measures under different conditions with facilitator-participant pairs as their own controls.
Hemsley, Bryant [2] (2018)	Electronic database search, ancestry searches of bibliographies	Any study type relating directly to FC and published in peer- reviewed literature and in English	No reported	18 included studies	Not reported	Papers divided into levels Level 1: Quantitative experimental studies (or systematic reviews of such studies) involved an a priori controlled manipulation of knowledge/stimuli presented to the facilitator and FC used by the individual in an attempt to empirically establish who was authoring the messages produced in response to the stimuli. Level 2: Studies and reviews that included quantitative descriptive data on the output generated through the process of FC without a priori testing of authorship (i.e. without empirical manipulation related to authorship). Level 3: Qualitative descriptive data on the output generated through the process of FC without pretesting of authorship, and qualitative research methods such as participant observations and interviews. Level 4: Anecdotal reports

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Study	Search strategy	Inclusion criteria	Population description	Total number of participants	Funding/con flict of interest	Other methodological details
Mostert [3] (2010)	Electronic database search, manual search of most widely read special education journals also performed	Any study type published in a peer-reviewed journal, studies be in English and published between 1999 and 2008.	Mix of participants with autism, cerebral palsy, Down syndrome, severe/profound learning disabilities, and complex communication problem. Most participants were chosen because they did not refuse to participate. The study with controlled experiments included participants without a disability.	3 included studies. Two claiming FC efficacy and one refuting. Unclear how many participants involved.	Not reported	Single author performed all screening and data extraction.
Roane, Kadey [4] (2019)	N/A	N/A case study	-9-year-old girl diagnosed with ASD and severe intellectual disability. -No speech, communicated by idiosyncratic gestures, and was not toilet trained. -Communicated daily at school via FC. Her school- based FC sessions were always conducted with a specific speech therapist. -FC sessions conducted 5 days per week, approximately 45 min per day. Two to four sessions were conducted daily. All sessions were conducted in a self-contained room (8 m by 10 m) that contained chairs, a table, and other materials depending on the condition in effect.	1	Not reported	-Materials: 25 words that the participant most commonly typed during previous FC sessions were identified. During experiments, text was presented at 40-pt black font on white backing across conditions. -Procedures Seven conditions were examined within a multi-element design. With the exception of the match-to-sample (MTS) condition, each session consisted of 25 trials in which each target was presented once in a random order. Two or three sessions were conducted for each condition. Across all conditions, a vocal prompt (and when appropriate, the cue; described below) to identify a target or answer a question about the target was presented once every 30 s

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Study	Search strategy	Inclusion criteria	Population description	Total number of participants	Funding/con flict of interest	Other methodological details
Siegel and Zimnitzky [5] (1998)	Not reported	Not reported	Not reported	Not reported	Not reported
Saloviita [6] (2018)	Electronic database search, hand searches and manual search of specific disability and communication journals	FC validated using linguistic analysis of the text samples (any study type), published in a peer-reviewed journal or an edited book.	6 studies with autism, 1 cerebral palsy and 1 intellectual disability. Aged 3-32.	9 included studies (n = 68). 4/9 studies were single case design.	None	Facilitation type not regularly reported across included studies. Eye contact and fading described in 1/9 studies.
Schlosser, Balandin [7] (2014)	Electronic database search, ancestry searches and contacting individual authors	Any study type relating directly to FC and published in peer- reviewed literature and in English	Not reported	Level 1: 27 studies considered in this review included both blinded and non-blinded conditions. Level 2: 11 studies Level 3: 7 studies Level 4: 24 documents	None	Checklist developed to provide means of classifying documents. This included FC (Yes/No), peer reviewed (Yes/No). Their level of inclusion (i.e., quantitative, qualitative, experimental, descriptive, or anecdotal data). Documents were then classified into Level 1 (quantitative experimental data), 2 (quantitative descriptive da), 3 (qualitative descriptive data) & 4 (anecdotal reports). All docs coded by 2 authors.
Mostert [8] (2001)	Electronic database search, hand searches and manual search of specific disability and communication journals	Any study type published in a peer reviewed journal. Excluded if the study participants were facilitators and not clients	Studies divided into Control procedures (CP) (+ and -) and No control procedures (NCP). Autism and intellectual disability, were most often represented across all study types. Age and sex: Not always provided. Where sex was specified, subjects were	Unclear. Some studies didn’t consistently report the number. CP- = range 1-32 CP+ = range 1-43 NCP+ = range 1-17	Not reported	While literature reviews often exclude published studies which are methodologically unsound, such studies were included here because a central issue in evaluating the efficacy of FC revolves around proponents’ use of methodologically suspect means to claim FC as a successful intervention. Communication medium: almost all the studies used typing by the subjects with direct or indirect physical support by their facilitators

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predominantly male. The subjects’ overall age range was 6–52 years.

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Table 3. Results/author conclusions

Study	Summary of results	Risks/limitations	Author conclusions
Jacobson, Mulick [1] (1995)	Level 1 or 2: No studies located. As such, no new research since 2014 was found that is suitable for evaluating authorship in FC. Level 3: Three studies were included and were based on messages produced during interviews with people who use FC, all of which are supportive of FC. The results of these studies were not further analysed as the authors of these studies ‘‘failed to pre-establish authorship by their participants’’. Level 4: 15 papers included. Because these reports were anecdotal, they cannot be considered as scientific evidence regardless of whether the opinions expressed supported or refuted authorship by the individual with a communication disability. There is a substantial growth of peer-reviewed literature that is critical of FC and warns against its use (n = 14) and scant peer- reviewed literature that is supportive of FC (n =1).	Lower level studies were not further analysed and subjected to quality review. Gives no insight into the methodological limitations and findings of these studies.	No new studies on authorship and therefore no evidence that FC is a valid form of communication for individuals with severe communication disabilities. Given that facilitator control has been documented repeatedly and replicated by several different research teams across continents over the last 26 years, it is not surprising to see that there are no additional studies addressing the question of authorship in FC.
Hemsley, Bryant [2] (2018)	The findings of controlled, as opposed to qualitative studies have been consistently negative, indicating that FC is neither reliably replicable nor valid when produced. Relevant controlled, peer reviewed, published studies repeatedly show that, under circumstances when access to information by facilitators is systematically and tightly manipulated, the ability to produce communication through FC varies predictably and in a manner that demonstrates that the content of the communication is being determined by the facilitator. Demonstrations of benefit are based on anecdotes or testimonials; baseline abilities and the possibility of spontaneous improvement are ignored, and related scientific procedures are rejected; and therapists who use FC unsuccessfully are blamed for not doing it correctly or not believing that it will work. Instead of controlled situations, proponents of FC suggest that qualitative criteria for validity should be used. Many of these criteria are not falsifiable, and all are easily contaminated by clinician or researcher expectations or	No search methods. A literature review of selected articles. This can introduce significant bias as it is unclear what was not included for review.	Controlled research using single and double blind procedures in laboratory and natural settings with a range of clinical populations with which FC is used have determined that, not only are the people with disabilities unable to respond accurately to label or describe stimuli unseen by their assistants, but that the responses are controlled by the assistants.

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Study	Summary of results	Risks/limitations	Author conclusions
	knowledge gained through social interactions and review of records in the work settings.
Mostert [3] (2010)	The two un-controlled studies were said to have produced false and misleading understandings of FC. Techniques included un- controlled transcriptions of FC interactions in everyday settings. Various biases were pointed out including participant consent, participants were able to practice tests before attempting with a facilitator. Furthermore, only a small number of participants achieved above chance levels on the facilitation task, however, this was presented as being effective. The only controlled study performed 5 experiments. All showing that communication is the function of the facilitator and not the client. These were moderately sized experiments. Several were designed to “see if they could ‘read the muscle movements’ of a normal participant”.	Literature review. Single author, could be seen as publication bias.	FC is one of the best exemplars of how practice can become absolutely dissociated from empirical research.
Roane, Kadey [4] (2019)	Correct responding occurred at chance levels (i.e., approximately 50% with expected deviations around that mean; ranging from an average of 36% in the Yes/No condition to an average of 63% in the 2-options with cue condition). In general, there was no evidence that the participant could correctly identify the various features of words that she produced during 53 days of FC sessions at school.	Single subject design	The current results are preliminary and, although we attempted to control for various FC procedures (e.g., providing encouragement via attention delivery), we did not provide physical support when the participant was given the opportunity to type; thus, we were not implementing FC
Siegel and Zimnitzky [5] (1998)	Research studies have very consistently invalidated various assumptions underlying FC by empirically testing various extant assumptions. These studies clearly showed that the FC messages originated from the facilitator and not the participant. Most studies indicating positive results of FC lack methodological rigor and are published as case reports in non-peer reviewed settings. In summary, FC has no established validity.	No search methods. A literature review of selected articles. This can introduce significant bias as it is unclear what was not included for review.	The miracles promised by FC are unsupported.

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Study	Summary of results	Risks/limitations	Author conclusions
Saloviita [6] (2018)	-Three studies contained no formal comparison material to check the supposed uniqueness of the texts produced. The remaining six studies applied some form of statistical analysis to support their conclusions. -Researchers regularly concluded that peculiarities found within writing performed using FC supported the authenticity of the communication. Their reasoning was that facilitators would not use these terms in their everyday writing. -There are several recommendations relating to qualification for FC intervention (limited speech, an inability to perform autonomous pointing), eye contact and fading. All the reviewed linguistic validation studies failed to confirm that their participants qualified for FC. It also remains unclear whether the studies, with one exception, followed the norms concerning eye contact and fading. - Studies have shown that the texts produced via FC are different when a comparison is made with the standard users of the language, or with the facilitators’ own writings. The authors consider these differences either as strong proof of the validity of FC, however, no independent evidence was reported in any study of the supposedly unique communication style of the participants	No methods for data extraction reported	1. No attention was paid to the reporting of possible message-passing tests in these studies. Experimental control was not considered essential. 2. Studies usually did not follow the recommendations of the FC field on the proper use of FC. 3. No independent information on the participants’ personal writing styles was given; consequently, the claim for true authorship remained unsupported. In summary, the linguistic studies reviewed here have not produced any support for the claims of FC’s validity. The idiosyncratic features of the texts produced via FC are more easily explained as artefacts of the writing process itself. Accordingly, there is no need to resort to the miraculous explanations provided by FC supporters.
Schlosser,
Balandin [7]
(2014)	Level 1: Included reviews and individual studies concluded that there was overwhelming evidence for facilitator control in FC. Level 2: In-depth analyses of these studies was not warranted because it was evident that the authors of these studies failed to pre-establish authorship by their participants. Level 3: This evidence provides descriptive qualitative data regarding the output generated by individuals using FC. The same conclusions apply as for level two evidence. Level 4: Because anecdotal reports were essentially perspectives of individuals, they could not be accepted as scientific evidence (a) supporting a demonstration of authorship, or (b) refuting a demonstration of authorship. Therefore, for the purposes of this review, a more in-depth analyses of these perspectives was not warranted.	Lower level studies were not further analysed and subjected to quality review. Gives no insight into the methodological limitations and findings of these studies. No overview/data extraction	Four levels of analysis were used in this review, although only literature that met level one criteria was deemed to provide scientific evidence of authorship of communicative messages. Three systematic reviews and four individual studies met level one criteria and this literature provided robust evidence that FC is not a valid technique.

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Study	Summary of results	Risks/limitations	Author conclusions
		presented for Level 1 studies. Descriptive summary provided instead.
Mostert [8] (2001)	The results of the review support and confirm the conclusions reached by previous reviewers of the empirical FC literature - FC is not valid and the facilitator influences the communication produced by the subject. The divide between the results of studies incorporating control procedures find very little to no support for the efficacy of FC, studies employing fewer control procedures produce mixed results, and studies ignoring control procedures almost universally find FC to be effective. In the cases of the few, tentative positive results emerging from studies reporting some form of control procedures, as in the cases of Cardinal et al. (1996) and Weiss et al. (1996), these results are much more likely the artefact of methodological problems than an accurate representation of persuasive evidence.	No second examiner to check validity of included studies and extract data.	In summary, FC proponents must be encouraged to subject their claims to further scientific verification, the claims of anecdotal evidence notwithstanding. If any small part of FC is to ever be found effective or even plausible, it is abundantly clear that only by careful use of controlled experimental methods will this be established.

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Table 4. Quality assessment checklists/quality of evidence

CASP Systematic Review (Yes/No/Can’ t tell)	Did the review address a clearly focused question?	Did the authors look for the right types of papers?	Do you think all the important, relevant studies were included?	Did the reviewer’s authors do enough to assess the quality of the included studies?	If the results of the review have been combined, was it reasonable to do so?	How precise are the results? No studies provided statistics related to precision (confidence interval etc.)	Can the results be applied to the local population?	Were all important outcomes considered ?	Are the benefits worth the harm and costs?	Quality of evidence (GRADE)
Jacobson, Mulick [1]	Can’t tell	Yes	Can’t tell	Can’t tell	Yes	N/A	Can’t tell	Can’t tell	No	redacted: s47C - deliberative pro
Hemsley, Bryant [2]	Yes	Yes	Yes	Yes	Yes	N/A	Can’t tell	Yes	No	redacted: s47C - de
Mostert [3]	Yes	Yes	Yes	Can’t tell	Yes	N/A	Can’t tell	Can’t tell	No	redacted: s47C - deliberative pro
Siegel and Zimnitzky [5]	Yes	Can’t tell	Can’t tell	Yes	Yes	N/A	Can’t tell	Can’t tell	No	redacted: s47C - deliberative pro
Saloviita [6]	Yes	Yes	Yes	Can’t tell	Yes	N/A	Yes	Yes	No	redacted: s47C - de
Schlosser, Balandin [7]	Yes	Yes	Yes	Yes	Yes	N/A	Can’t tell	Yes	No	redacted: s47C - de
Mostert [8]	Yes	Yes	Yes	Yes	Yes	N/A	Yes	Yes	No	redacted: s47C - de
JBI Checklist Case Control (Yes/No/ Unclear/NA)	Were patient’s demographic characteristic s clearly described?	Was the patient’s history clearly described and presented as a timeline?	Was the current clinical condition of the patient on presentation clearly described?	Were diagnostic tests or assessment methods and the results clearly described?	Was the intervention or treatment procedure clearly described?	Was the post- intervention clinical condition clearly described?	Were adverse events (harms) or unanticipat ed events identified and described?	Does the case report provide takeaway lessons?
Roane, Kadey [4]	Yes	Yes	Yes	Yes	Yes	No	No	Yes		redacted: s47C - deliberative p

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3. Summary

Peer reviewed evidence investigating the validity of facilitated communication is of low to very low quality. Systematic and narrative reviews on the topic include studies considered to represent low levels of evidence (based on the NHMRC evidence hierarchy) and the synthesis of the data extracted from included studies is poorly reported.

Experimental studies on FC are either Level III-2 (Non-randomised, experimental trial, Cohort study, Case-control study) Level III-3 (Historical control study, Two or more single arm study, Interrupted time series without a parallel control group) or Level IV (case series). These types of studies are often utilised when a new intervention is being investigating initially, however, they are more prone to bias which can impact on the efficacy of results compared to a pseudo randomised or randomised controlled trial (RCT). There are no RCT’s which investigate FC or compare it to another best practice intervention.

The main area of dispute around FC is whether people with a disability are being facilitated to express their own communicative intentions, or whether the source of the output is that of the facilitator (termed authorship). All literature included in this review came to the same basic conclusion – 1) FC is not valid and the facilitator influences the communication produced by the subject 2) Results of studies incorporating control procedures find very little to no support for the efficacy of FC a. studies employing fewer control procedures produce mixed results b. studies ignoring control procedures almost universally find FC to be effective

Reports of positive results following the use of FC (unexpected language and literacy abilities) tend to have been derived from uncontrolled or poorly controlled case studies and published in non-peer reviewed journals/websites. FC proponents have essentially supplied detailed but only anecdotal descriptions of what individuals have been helped to say through FC.

Rather than seeking conventional validation for the technique, FC proponents have tended to avoid normal experimental methods and scientific investigation on the grounds that the imposition of an experimental design destroys the participant’s trust upon which their desire to communicate is based.

“Facilitated communication is one of the best exemplars of how practice can become absolutely dissociated from empirical research.” Mostert [3]

At this time, all credible evidence is against the use of FC. Proponents of the technique must subject their claims to further scientific verification through the use of carefully controlled experimental methods before making claims of success.

4. References

5. Jacobson JW, Mulick JA, Schwartz AA. A History of Facilitated Communication: Science,

Pseudoscience, and Antiscience Science Working Group on Facilitated Communication. The American psychologist. 1995;50(9):750-65. 2. Hemsley B, Bryant L, Schlosser RW, Shane HC, Lang R, Paul D, et al. Systematic review of facilitated communication 2014–2018 finds no new evidence that messages delivered using facilitated communication are authored by the person with disability. Autism & Developmental Language Impairments. 2018;3:2396941518821570. 3. Mostert MP. Facilitated communication and its legitimacy-twenty-first century developments. Exceptionality. 2010;18(1):31-41. 4. Roane HS, Kadey HJ, Sullivan WE. Evaluation of word recognition following typing produced through facilitated communication. Journal of Applied Behavior Analysis. 2019;52(4):1107-12. 5. Siegel B, Zimnitzky B. Assessing ‘alternative’ therapies for communication disorders in children with autistic spectrum disorders: facilitated communication and auditory integration training. Journal of Speech-Language Pathology & Audiology. 1998;22(2):61-73. 6. Saloviita T. Does Linguistic Analysis Confirm the Validity of Facilitated Communication? Focus on Autism & Other Developmental Disabilities. 2018;33(2):91-9. 7. Schlosser RW, Balandin S, Hemsley B, Iacono T, Probst P, von Tetzchner S. Facilitated communication and authorship: A systematic review. AAC: Augmentative and Alternative Communication. 2014;30(4):359-68. 8. Mostert MP. Facilitated communication since 1995: a review of published studies. J Autism Dev Disord. 2001;31(3):287-313.

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