A qualitative evidence synthesis of the experiences and perspectives of communicating using augmentative and alternative communication (AAC)

Figures & data

Table 1. Description of studies included in the review.

Study details			Participant details				Methodology details
Authors	Title	Country	Underlying medical condition	Age	Sample size (–)	Gender	Study design	Aims	Data collection	Analyses
Bay [37]	Communicating through social media: how persons with ALS use the internet to maintain social connections	USA	Amyotrophic lateral sclerosis (ALS)	49–73	n = 8	5 female, 3 male	Parallel mixed methods	To explore the social participation experiences and perspectives of pALS [sic] who use AAC to inform current models of practice	Questionnaire, web-based interviews and video-recordings	Inductive analysis and constant comparison
Bruce, et al. [48]	Writing with voice: an investingation of the use of a voice recognition system as a writing aid for a man with aphasia	UK	Stroke	57	n = 1	1 male	Case study	Investigation whether a man with fluent aphasia could learn to use Dragon Naturally Speaking to write.	Email feedback	Descriptive
Caron & Light [43]	“My world has expanded even though I'm stuck at home”: Experiences of individuals with amyotrophic lateral sclerosis who use augmentative and alternative communication and social media.	USA	Amyotrophic lateral sclerosis	35–76	n = 9	4 female, 5 male	Qualitative: focus group	This study aimed to expand the current understanding of how persons with amyotrophic lateral sclerosis (pALS) use augmentative and alternative communication and social media to address their communication needs.	Online focus group	Thematic analysis
Caron & Light [47]	Social media experiences of adolescents and young adults with cerebral palsy who use augmentative and alternative communication.	USA	Cerebral palsy	14–21	n = 7	4 female, 3 male	Qualitative pilot study: Focus group	To expand the current understanding of how adolescents and young adults with cerebral palsy (CP) and complex communication needs use social media.	Online focus group	Thematic analysis
Carpe, et al. [35]	Perceptions of writing and communication aid use among children with a physical disability	Canada	Cerebral palsy, spinal tumour	8–18	n = 8	5 females, 3 males	Qualitative	To explore the perceptions of children with physical disabilities regarding their writing and communication aids.	In-depth, semi-structured interviews and focus group	Constant compar-ison: inductive approach to thematic analysis
Childes, et al. [38]	The use of technology for phone and face to face communication after total laryngectomy	Canada	Laryngectomy	64 (mean)	n = 17	6 female, 11 male	Mixed methods	To investigate the ways in which individuals who have undergone laryngectomy might use SGDs or other types of communication technology in place of verbal communication.	Online questionnaire	Descriptive
Chung, et al. [49]	Perspectives of high tech augmentative and alternative communication users with cerebral palsy at the post- secondary level	USA	Cerebral palsy	Early 30 s- mid 40 s	n = 5	2 female, 3 male	Qualitative case studies	To provide a better understanding of the communication challenges experienceed and the strategies used to face the harsh demands during transition years	In-depth interviews and observations	Not specified
Davis [17]	Reflections of nine participants regarding their experiences of being african-american and using augmentative and alternative communication across their lifespan at home, school, vocation, and community	USA	Cerebral palsy	26–54	n = 9	2 female, 7 male	Qualitative: Phenomenological	To describe and develop an understanding about the experience of being Non-European American (i.e. diverse) and using AAC	Semi-structured interviews: phenomenology	Phenomenology and thematic
Dickerson, et al. [33]	The meaning of communication: Experience with augmentative communication devices	USA	Cerebral palsy, traumatic brain injury, stroke, other neurological condition	12–69	n = 16	4 female, 12 male	Secondary analysis of narratives from a previous study	To increase our understanding of the importance of communication made possible by the [AAC] device	Secondary hermeneutic analysis	Phenomenological interpretation of narratives
Hodge [18]	Why is the potential of augmentative and alternative communication not being realized? Exploring the experiences of people who use communication aids	UK	Not stated	Adults	n = 19	2 female, 17 male	Qualitative	To develop an understanding of how the people who borrowed [AAC] equipment experience using that equipment	Semi-structured interviews	Not specified
Howery [36]	Out of time: The Experience of Speech generating device users	Canada	Cerebral palsy, Rett syndrome, degenerative neurological condition	Adolescents	n = 9	9 (gender not stated)	Qualitative	To provide new under- standings and insights into the meaning of phenomena …speaking with a SGD [speech-generating device]	Phenomenological investigation	Phenomenological enquiry
Iacono, et al. [41]	Experiences of adults with complex communication needs receiving and using low tech AAC: an Australian context	Australia	Developmental disability, traumatic brain injury	21–74	n = 15	6 female, 9 male	Qualitative	To explore how people who received low tech aids […] used them	Interviews	Content and thematic analysis
Johansson, et al. [44]	Communication difficulties and the use of communication strategies: from the perspective of individuals with aphasia	Sweden	Stroke	48–79	n = 11	4 female, 7 male	Qualitative	To explore how people with aphasia experience having conversations, how they handle communication difficulties, and how they perceive their own and their communication partners’ use of communication strategies	Semi-structured interviews; phenomenology	Content analysis
Lund & Light [46]	Long-term outcomes for individuals who use augmentative and alternative communication: Part III – contributing factors	USA	Cerebral palsy	19–23	n = 7	7 male	Qualitative	What factors contributed either positively or negatively to outcomes for a group of young men with complex communication needs?	Interviews	Thematic analysis
Martin, & Newell [42]	Living through a computer voice: A personal account	UK	Cerebral Palsy	Adult	n = 1	1 male	Personal experience report	To explore everyday practical issues and broader imaginative, philosophical and sociological implications of AAC technology	Interview	No analysis
Murphy [45]	“I prefer contact this close”: Perceptions of AAC by people with motor neurone disease and their communication partners	UK	Amyotrophic lateral sclerosis (ALS)/ Motor Neurone Disease (MND)	45–78	n = 15	7 female, 8 male	Qualitative case study	What is the purpose of the communication and the use of augmentative and alternative communication (AAC) according to the perceptions of people with MND and their partners were examined?	Semi-structured interviews	Cognitive mapping
Paterson & Carpenter [34]	Using different methods to communicate: How adults with severe acquired communication difficulties make decisions about the communication methods they use and how they experience them	UK	Stroke, amyotrophic lateral sclerosis, traumatic brain injury, Huntington’s disease	45–70	n = 7	7 male	Qualitative: Phenomenology	To explore how adults with severe acquired communication difficulties experience and make decisions about the communication methods they use.	Semi-structured interviews; phenomenology	Colaizzi’s phenomenological analysis framework
Smith & Connolly [40]	Roles of aided communication: perspectives of adults who use AAC	Ireland	Cerebral palsy	Adults	n = 18	Not stated	Mixed methods	To describe the supports available to adults using aided communication, their views on the role(s) they assigned to aided communication within their total communication systems and the factors they identified as affecting their use of aided communication	Structured questionnaire-based interviews	Descriptive
Trembath, et al. [23]	“Communication is Everything:” The Experiences of Volunteers who use AAC	Australia	Not stated	20–60	n = 24	12 female, 12 male	Qualitative	To explore the impact that using augmentative and alternative communication (AAC) had on the experiences of 24 adults with lifelong disabilities who worked as volunteers.	In-depth interviews and grounded theory	Grounded theory

Figure 1. PRISMA flow diagram of screening process.

A flow diagram consisting of five boxes representing the distinct stages of the systematic review process and containing the number of results identified at each stage. A sixth box presents the numbers and reasons for excluding papers at the full-text screen stage.

Table 2. A summary of the CERQual evidence profile.

Summary of review findings	Assessment of review findings				Statement
	Methodological	Coherence	Adequacy	Relevance	Confidence in Findings	Explanation
The value ascribed to communication aids is related to the effect that the device has on the individual’s sense of humanness. The outcomes from using AAC fall into two categories: communication and uses other than communication. Communication experiences are heavily influenced by contextual factors.	Minor limitations: Lack of description of researcher reflection or reflexivity during data collection or analysis. Lack of detail reported on the rationale for methodological choices and/or process.	Moderate concerns: Analysis tended to be descriptive rather than transformative. Limited representation of non-verbal communication in primary data. Little evidence of any contradictory data presented outside of a binary analysis e.g., ‘barriers/facilitators’	Minor concerns: Adequacy of the data richness and the number of participants was generally fairly good. Findings are supported from the data available in review papers.	Moderate concerns: In papers exploring notions beyond the scope of the review question, relevant data had to be extracted from within the primary data in response to the question.	Moderate	Minor concerns regarding the methodological limitations and adequacy were identified. The overall themes from the review were well-supported from data across most studies of reasonable quality within the review. In sub-themes less strongly represented in the data i.e. More than a Voice, data from high quality papers support themes however confidence in the evidence for these is less than for other findings.

Figure 2. A map of the themes and subthemes generated during data analysis.

A visual representation of the relationship between the aim of the review, the three constructs that informed the analysis, and the 10 themes and 4 sub-themes that were generated during the analysis.

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