Parents’ Perceptions and Experiences with Their Children’s Use of Augmentative/Alternative Communication: A Systematic Review and Qualitative Meta-Synthesis
Abstract
:1. Introduction
- (a)
- To provide a complete overview of parents’ experiences and perceptions regarding the use of AAC by their children with complex communication needs in order to identify, integrate, and interpret common themes which may contribute to improving professional practice:
- -
- What do families think about the support they receive during the process of AAC implementation?
- -
- What are the characteristics of the AAC that constitute barriers and facilitations to their use (accessibility, portability, design, economic cost, etc.)? What are the reasons that lead some families to abandon the use of AAC?
- -
- What challenges are posed by the different contexts of use of the AAC?
- (b)
- To find out the quality of the investigations about family’s experiences and opinions on the use of AAC by their children, with the aim of determining the rigor of the research base to date, and the aspects needed to be overcome in future studies.
2. Methodology
2.1. Search Strategy and Screening Process
2.2. Exclusion and Inclusion Criteria
2.3. Methodological Quality Evaluation
2.4. Data Extraction and Thematic Synthesis
2.4.1. Stages 1 and 2: Coding Text and Developing Descriptive Themes or Sub-Themes
2.4.2. Stage 3. Generating Analytical or Main Themes
3. Results
3.1. Study Selection
3.2. Study Characteristics
3.3. Thematic Synthesis
3.3.1. Theme 1 Support
Subtheme 1: Parents’ Support and Training
“I think that if we were really shown the full capabilities of the system by the speechie [SLP] then it would just be ingrained in what we’re doing every day.”[35] (p. 63)
“We need to educate the teachers more… Because Anthony is not alone, and there are still [students] in this district who are completely nonverbal and don’t have a device.”…Until we got trained [on the SGD], it was like a foreign language. People say, “Oh you just have this machine.” But it’s really difficult unless you receive training … I don’t know, I just kind of wish we had more support, like maybe a person that can come in and make parents feel comfortable.”[27] (p. 270)
Subtheme 2: Accessibility
“I may not talk to her as much. You know what I mean? Cause with her brother I can talk to him in the car. But with (Child) because she can’t answer me in the car… I don’t ask her questions.”[24] (p. 242)
“Nat, a parent who had previously lived in a rural area, remembered travelling long distances to see the specialist clinical team ‘every six months I think’.”[23] (p. 78)
Subtheme 3: Service Providers’ Support
“The therapist’s expertise is insufficient”, “I think there’s a need for AAC education targeting special education teachers.”[37] (p. 325)
“They [the education department] treat you all like idiots, instead of collaborating, instead of sharing expertise they are just toxic and they couldn’t care less.”[34] (p. 52)
Subtheme 4: Service Coordination
“We need more inter-institutional communication or arrangements.”[37] (p. 325)
“They’ve not received any supervision from their special educator. So it’s ignorance, and they should need more material too. And who’s responsible? But everyone is—so no one takes responsibility. It’s sad—though it was probably meant to be the other way around.”[41] (p. 376)
“Selena was diagnosed with cerebral palsy at 3 months, Charlie was swamped by the recommendations for home practice coming from Selena’s occupational therapist, physiotherapist, SLP, and others—at times adding to more than 27 hours of homework per day: ‘…and that didn’t take into account that she needed to be fed, she needed to sleep, she needed to have a bath, and she just needed to be a kid!’. As Charlie suggested: ‘I think if they started doing more of a multidisciplinary model… then everyone would be aware of what the other therapists were putting on the family…”[23] (p. 79)
3.3.2. Theme 2 AAC Systems
Subtheme 5: Usability and Acceptability
“My daughter uses the iPad. She’s incredibly free to be like everyone else when she uses it, compared to many other things. Here she’s more on the same level as her brothers. Here, there are suddenly things that she’s able to do herself. Then it strengthens her self-esteem.”[41] (p. 375)
“[PECS worked] pretty easily… he will just go up to them and he’ll tap them and he’ll show you what he wants.”[38] (p. 413)
Subtheme 6: Features
“If it was customizable, and if there were 100 cartoon characters and you got to pick the one your child loves, that would be huge.”
“I wish I could talk to Bill Gates and say ‘Hey, come on, come up with a program’ maybe something directly linked to the brain too, like the thought processing, when you think how advanced the technology is now, if they can have something linked to the brain to move limbs already, well why can’t they do that with the speech.”([24], p. 242)
“If she wants to communicate with the device she’s basically forced to look on a screen all the time and it’s a bit cold, you know. It’s not a good situation for someone who is as socially in tune as she is.”(Emily) [39] (p. 247)
“It’s a burden to mothers. We have to look after our children while lugging the AAC aids around. The pictures are, shall I say, too hard. A style drawn in lovelier, softer lines, like our own traditional Korean style, seems like it would suit us more. The system is too simplistic. The process of forming sentences takes too long.”[37] (p. 325)
“If she could use apps, at least there would be more choice, but now it seems like most apps are in English.”[33] (p. 116)
Subtheme 7: Cost and Funding
“We got a quotation for a high-technology device, and it was very expensive. It is also difficult to find a sponsor.”[33] (p. 115)
“I was beside myself, I was so angry that I’d been given this eleven and-a-half thousand dollar machine, and nobody in [the state] could give me any kind of support.”[23] (p. 78)
“iPads are good but again there’s all that risk of the cost of them. So every time to fix a screen was $150 and after three times we just gave up and went well this is only gonna be in the house.”[36] (p. 5)
3.3.3. Theme 3 Integration of AAC in Daily Life
Subtheme 8: Family
“I work full-time as a nurse, and my husband works full-time, and three kids and two older kids who are running in six directions. And unfortunately, we probably fall short of making time [to support AAC use].”[27] (p. 270)
“He wants to watch Sponge Bob all the time. Well he can’t, because there is 3 other kids. Or I am realistic so I know that I don’t work with her how I should I would like to, like sit with her and work, but then I started to think ok, you are working full time…”[29] (p. 204)
“I think he just comes back home and thinks I am off I don’t have to use them anymore, I have free time, don’t bother me with pictures.”[29] (p. 202)
Subtheme 9: School
“Actually, there is a big improvement from using a Tablet I know this through experience. Now for my baby, I brought the Tab to the centre on Friday to get the app inserted… Now my baby started working on a Tab from last week. Now she sits and works on it for 1 1 = 2 hours. She is now interested in it. That’s because she is used to the things in it… Honestly, my baby was ill over the last 3 days. But even while she was ill I put her to work. That’s because I have got this into me. I feel that the child is getting something out of this. … I sent the teacher the work that she did everyday through Viber and WhatsApp. So they looked at what we did and its shortcomings and told us how to change things. So, daily, from Sunday to today, I video recorded the work and sent it through WhatsApp … When we have so much technology, there is no point if we don’t take advantage of it, no?”[32] (p. 188)
“At school they kept taking [the AAC system] off him. And so then he just started balking at it and would only use it for school work because that’s the rules. And so even at home he would, he stopped using it so except for his homework.”[35] (p. 63)
“As long as I was quiet and didn’t understand my rights, I was a “good” parent. And it shouldn’t be like that … It’s all fine and dandy for a little while, but they stopped [providing inclusive services] and so I had to do a lot of advocacy, a lot of research to learn and things like that … There’s so many barriers, it’s so hard.”[27] (p. 270)
“Evan, he hasn’t really been given a reading instruction… They don’t think children who are non-verbal can learn [to read]. So, they don’t really teach them.”[27] (p. 268)
Subtheme 10: Social and Community
“There were times—before the [name of communication device], she would want to be on the floor playing or whatever, but she will bypass playtime so she can communicate because that’s more important.”[24] (p. 244)
“No-one comes. We’ve invited them but nobody comes. For her birthday this year it did work, two kids actually came. But we asked last year at the end of the school year if any of her classmates would mind just popping over in the summer time, spending an hour with her, or going to the movies with her, and no-one volunteered, so … [long pause] …”[24] (p. 245)
3.4. Methodological Quality of Included Studies
4. Discussion
Limitations
5. Conclusions
Author Contributions
Funding
Conflicts of Interest
References
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Author, Year, Country | Sample | Objective | Type of AAC | Study Design and Method | Main Themes |
---|---|---|---|---|---|
Anderson et al. [23], Australia | 6 parents (2M, 4F) of 6 children (3M, 3F, 2–18 years old) with CP (n = 4), ASD (n = 2) | Perspectives and experiences of parents of children with an SGD | SGD | Qualitative study narrative analysis, semi-structured interview into themes and categories | Five primary themes were identified: (a) access to services, (b) therapist knowledge and expertise, (c) service continuity, (d) roles and responsibilities, and (e) parent power. |
Batorowicz et al. [24], Canada | 8 parents (2M, 6F) of 8 children (6F, 2M), 5–15 years old, IQ > 80, with communication production problems | Views of parents of children who use aided communication on social participation, communicative interactions, and relationships | Graphic communication system on a speech-generating device (SGD) | Qualitative study Thematic content analysis, semi-structured interview | Five themes were identified: (a) communication partners and strategies, (b) access to aided communication, (c) participation in society, (d) interaction opportunities, and (e) social relationships. |
Boster et al. [25], USA | 5 parents of 5 children with ASD (4–17 years old) | Parents’ views of children with ASD regarding appealing features of AAC applications | AAC app designs of: PECS, Sign Language, Vantage Lite, LAMP | Descriptive study Focus group interviews | Parents’ focus group provided insight on appealing design features for future AAC App: communicative mode, play mode, incentives. |
Gona et al. [26], Kenia | 10 Caregivers (5M, 5F) of 10 children (4CP, 4 ID, 1 Deafness, 1 ASD) 4–12 years old | Caregivers’ experiences about effects of a home-based intervention in AAC for children | home-based intervention using unaided AAC / PECS | Qualitative study semi-structured interviews | Four main themes emerged from the data: communication process; normality; struggle; and supernatural power. |
Biggs et al. [27], USA | 4 mothers of 2 children with ID, and 2 children with ASD (6–17 years old) | Perspectives of different stakeholders (parents) about challenges and facilitators to successful intervention for students who use AAC | Unaided AAC and Low-tech/High Tech | Qualitative study semi-structured interviews and content analysis | Findings revealed three areas across interacting ecological systems as being important determinants: AAC access, family–school partnerships and supports, and inclusive education. |
Calculator et al. [28], USA | 122 parents of children with AS (3–18 years old) | Parents’ views of using AAC including speech generating devices, in relation to other aided and unaided methods of communication | AAC devices VOCAs | Qualitative study thematic analysis, semi-structured interview | Reasons for children’s rejection and acceptance of the most advanced electronic AAC devices introduced to them within the past 3 years. |
Doak [29], UK | 5 mothers of 5 children with ASD (1F, 4M) 6–8 years old | Family’s perceptions of affordances and constraints of AAC used in the home | AAC applications (PECS cards, Makaton signing) | Qualitative study thematic analysis, semi-structured interview | Four themes identified: AAC in the family home, embodied idiosyncratic communication, competing household priorities, parents’ emotions. |
Fäldt et al. [30], Sweden | 16 parents of children 9M and 4F children (2–3 years old). 7 with ASD | Parents’ perceptions of AAC applications use and outcomes of their child’s communication | AAC applications during 1 year ComAlong Toddler Intervention | Qualitative study semi-structured telephone interviews | Four categories were identified: (a) Development for parents and the child, (b) acquiring useful tools, (c) useful learning strategies, and (d) benefits and challenges regarding intervention structure. |
Glacken et al. [31], Ireland | 18 parents (15F, 3M) of 18 children with DS, ASD, CP (2–11 years old) | Parents’ experiences of Lámh as a communication support to their child | AAC unaided system: Lámh, a key word signing approach | Qualitative exploratory research design thematic analysis, interviews | Three subthemes: Lámh potential, achieving and maintaining engagement (accessibility, training), speech and language therapy support, and the existence of a Lámh signing environment external to the home. |
Hettiarachchi et al. [32], Sri Lanka/Ireland | 16 parents (11F, 5M) of 16 children (9 CP, 3 ASD, 4 ID), 5–15 years old | Perceptions of parents in a resource-poor Global South country on the use of mobile technology as AAC devices | Multimodal AAC (mobile, smartphone, tablet, iPad, JABtalk app | Qualitative study focus group discussion, semi-structured interviews | Six broad themes emerged indicating a penchant for mobile technology, though its current use with their children was mainly as a teaching tool rather than a communication. |
Singh, et al. [33], Malaysia | 12 parents (10F, 2M), of 12 children (6 CP, 6 ASD) 3–12 years old | Malaysian parents’ perception of AAC and their experience | PECS, Makaton, communication book or board | Qualitative analysis, semi-structured interviews | Three main themes: (a) impact of the use of AAC, (b) challenges faced, and (c) hopes for the future. |
Johnson et al. [34], Australia | 9 parents of 9 children 2–17 years old with DS, ASD, ID | Parents perspectives of AAC in the self-directed funded service context of Kids Chat | Multimodal AAC service low-tech aids and apps | Qualitative study thematic analysis, semi-structured interview | The overall themes were accessing information, unrelenting responsibility, and looking to the future. |
Moorcroft et al. [35], Australia | 12 parents of 12 children (6F, 6M) 3–16 years old (5 ASD, 1 ID, 1 AS, 5 others | Parents perceptions on the contribution of external stakeholders to rejection or abandonment of an AAC system | Unaided and aided (low- and high-tech) AAC systems | Qualitative study Thematic analysis, semi-structured interview | Four themes: (1) parents were influenced by the beliefs of professionals; (2) parents did not feel supported by SLPs; (3) communication between stakeholders was not effective; (4) difficulties using AAC without a supportive community. |
Moorcroft et al. [36], Australia | 12 parents of 12 children (6F, 6M) 3–16 years old (5 ASD, 1 ID, 1 AS, 5 others | Parent perspectives on the contribution of factors associated with the family unit to the rejection or abandonment of an AAC | Unaided and aided (low- and high-tech) AAC systems | Qualitative study Thematic analysis, semi-structured interview | (a) Parents lacked resilience to implement AAC, (b) was extraneous work for parents, (c) the child did not use AAC, and (d) parents were not satisfied with AAC. |
Park [37], Korea | 12 mothers, 12 children (7M, 5F), 5–15 years old, 4 ASD, 4 CP, 1 ID, 1 language disorder, 2 others | Parents’ experiences with AAC | Low- and high-tech AAC systems: kids voices, tablet, PECS, communication boards/books | Qualitative study semi-structured interview | Seven themes related to parents’ experiences of AAC intervention, two themes regarding the factors affecting the acceptance of AAC. |
Schladant et al. [38], USA | 4 mothers of 4 children with FXS (4–12 years old) | Parents’ perspectives on AAC for children with FXS and how to improve communication outcomes | AAC System (PECS, communication boards) | Qualitative study semi-structured interview | Four themes identified: AAC usefulness, mothers attitudes, AAC experiences, stressors, need for support. |
O’Neill et al. [39], USA | 9 parents of 8 children with CP (6–14 years old) | Parent perspectives on how AAC technologies were integrated into everyday life | AAC technology (apps, iPad, SGD) | Qualitative study semi-structured interview | Themes: (a) integrating AAC into life, (b) AAC technologies, (c) child needs and skills, (d) parent responsibilities and priorities, and (e) AAC decision making. |
Townsend et al. [40], USA | 14 mothers of 14 children with ASD (4–17 years old) | African American mothers’ perceptions of the utilization of AAC by their children with ASD | AAC technology (aided and unaided) | Qualitative study semi-structured interview | Three themes were identified: AAC utilization, independence, and value of social interaction. |
Wilder et al. [41], Sweden | 15 parents (13F, 2M) of children with severe difficulties in communication (3–16 years old) | Understanding of how parents share learning about (AAC) for people with SD | Multimodal AAC, iPads, apps | Qualitative study focus group interviews, thematic analysis | Themes: AAC in School, AAC and Technology, AAC and holistic perspective. Communication form, Multimodal AAC is effective, New technology boosts the person’s confidence’, Cooperation among a person’s environments. |
Theme | Subtheme | Findings |
---|---|---|
Parents’ support and training | Parents expressed their desire of having a high level of support with a variety of service delivery models and contexts | |
Service Support | Accessibility | Parents were concerned about accessibility difficulties in certain contexts |
Service providers’ | Lack of therapist AAC knowledge and support for AAC appeared to be the biggest obstacle impacting AAC use | |
Service coordination | Parents complained about the lack of communication between their service providers | |
Characteristics of AAC Systems | Usability and acceptability | Parents reported that these AAC tools were particularly useful, and they highlighted the importance of having fast and easy access to technical help |
Features | The technological characteristics of AAC systems should be adapted to the needs of families with children with CCN: more motivating features and a wide variety of resources and components | |
Cost and funding | Lack of funding available for long-term support services | |
Integration of AAC in daily life | Family | Parents perceived that they must deal with many challenges: lack of time, care of other children, relationship between siblings, extended family, lack of AAC training |
School | Parents claimed for a more inclusive education system | |
Social and community | Parents concerned about difficulties in their children’s social relationships |
Reference | Q1 | Q2 | Q3 | Q4 | Q5 | Q6 | Q7 | Q8 | Q9 | Q10 | Total |
---|---|---|---|---|---|---|---|---|---|---|---|
Anderson et al. [23] | 1 | 0.5 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 9.5 high |
Batorowicz et al. [24] | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 10 high |
Boster et al. [25] | 1 | 1 | 0.5 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 9.5 high |
Gona et al. [26] | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 0.5 | 1 | 1 | 9.5 high |
Biggs et al. [27] | 1 | 0.5 | 1 | 1 | 1 | 1 | 0.5 | 0.5 | 1 | 1 | 8.5 high |
Calculator et al. [28] | 1 | 0.5 | 1 | 1 | 1 | 1 | 1 | 0.5 | 1 | 1 | 9 high |
Doak [29] | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 10 high |
Fäldt et al. [30] | 1 | 1 | 0.5 | 1 | 1 | 1 | 0 | 1 | 1 | 1 | 8.5 high |
Glacken et al. [31] | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 10 high |
Hettiarachchi et al. [32] | 1 | 1 | 1 | 0.5 | 1 | 1 | 1 | 1 | 0.5 | 1 | 9 high |
Singh, et al. [33] | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 10 high |
Johnson et al. [34] | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 10 high |
Moorcroft et al. [35] | 1 | 1 | 1 | 1 | 1 | 0.5 | 0.5 | 1 | 1 | 1 | 9 high |
Moorcroft et al. [36] | 1 | 1 | 1 | 1 | 1 | 0.5 | 0.5 | 1 | 1 | 1 | 9 high |
Park [37] | 0.5 | 1 | 0.5 | 1 | 1 | 1 | 0 | 1 | 0.5 | 1 | 7.5 mod |
Schladant et al. [38] | 1 | 1 | 1 | 0.5 | 1 | 1 | 1 | 1 | 1 | 1 | 9.5 high |
O’Neill et al. [39] | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 10 high |
Townsend et al. [40] | 1 | 1 | 1 | 0.5 | 1 | 0 | 1 | 0.5 | 0.5 | 1 | 7.5 mod |
Wilder et al. [41] | 1 | 0.5 | 1 | 1 | 1 | 0.5 | 1 | 0.5 | 1 | 1 | 8.5 high |
% of Included studies rated as: ‘Yes’ | 94 | 78 | 84 | 84 | 100 | 78 | 73 | 73 | 84 | 100 |
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Berenguer, C.; Martínez, E.R.; De Stasio, S.; Baixauli, I. Parents’ Perceptions and Experiences with Their Children’s Use of Augmentative/Alternative Communication: A Systematic Review and Qualitative Meta-Synthesis. Int. J. Environ. Res. Public Health 2022, 19, 8091. https://doi.org/10.3390/ijerph19138091
Berenguer C, Martínez ER, De Stasio S, Baixauli I. Parents’ Perceptions and Experiences with Their Children’s Use of Augmentative/Alternative Communication: A Systematic Review and Qualitative Meta-Synthesis. International Journal of Environmental Research and Public Health. 2022; 19(13):8091. https://doi.org/10.3390/ijerph19138091
Chicago/Turabian StyleBerenguer, Carmen, Eva Rosa Martínez, Simona De Stasio, and Inmaculada Baixauli. 2022. "Parents’ Perceptions and Experiences with Their Children’s Use of Augmentative/Alternative Communication: A Systematic Review and Qualitative Meta-Synthesis" International Journal of Environmental Research and Public Health 19, no. 13: 8091. https://doi.org/10.3390/ijerph19138091