Disability and Rehabilitation: Assistive Technology

ISSN: 1748-3107 (Print) 1748-3115 (Online) Journal homepage: http://www.tandfonline.com/loi/iidt20

“It’s got to be more than that”. Parents and speech-language pathologists discuss training content for families with a new speech generating device Kate Louise Anderson, Susan Balandin & Roger James Stancliffe To cite this article: Kate Louise Anderson, Susan Balandin & Roger James Stancliffe (2014): “It’s got to be more than that”. Parents and speech-language pathologists discuss training content for families with a new speech generating device, Disability and Rehabilitation: Assistive Technology To link to this article: http://dx.doi.org/10.3109/17483107.2014.967314

Published online: 26 Sep 2014.

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Date: 13 November 2015, At: 15:33

http://informahealthcare.com/idt ISSN 1748-3107 print/ISSN 1748-3115 online Disabil Rehabil Assist Technol, Early Online: 1–10 ! 2014 Informa UK Ltd. DOI: 10.3109/17483107.2014.967314

RESEARCH PAPER

‘‘It’s got to be more than that’’. Parents and speech-language pathologists discuss training content for families with a new speech generating device Kate Louise Anderson1, Susan Balandin2, and Roger James Stancliffe1 Faculty of Health Sciences, University of Sydney, Lidcombe, Australia and 2Faculty of Health, Deakin University, Burwood, Australia

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Abstract

Keywords

Purpose: Although parent-implemented interventions for children with a speech-generating device (SGD) have been well researched, little is known about parents’ or speech-language pathologists’ (SLPs) views around parent training content. In this project, we aimed to identify areas that parents and SLPs consider should be included in training for families with a new SGD. Methods: Seven parents of children with an SGD and three SLPs who were new to the SGD field, participated in individual semi-structured interviews. Ten SLPs experienced in SGD practice took part in two focus groups. Data were analysed using grounded theory methods. Results: Participants identified the following areas suitable for inclusion in a family SGD training package: (a) content aimed at improving acceptance and uptake of the SGD, including technical guidance, customisation and reassurance around SGD misconceptions; (b) content around aided language development and (c) home practice strategies, including responsivity, aided language stimulation and managing children’s motivation. Conclusions: Participants identified diverse training targets, many of which are unexplored in parent-training research to date. Their recounted experiences illustrate the diversity of family capacity, knowledge and training priorities, and highlight the need for collaborative planning between families and SLPs at all stages of SGD training.

Augmentative and alternative communication, communication partner training, parent training, speech generating device History Received 13 June 2014 Revised 13 September 2014 Accepted 16 September 2014 Published online 26 September 2014

ä Implications for Rehabilitation 





Training needs for families with a new speech generating device (SGD) are diverse, ranging from technology-specific competencies to broader areas, such as advocacy, teamwork and goal-setting skills. Each family with a new SGD will have a unique profile of training needs, determined by individual learning capacity, priorities, prior knowledge and experience, as well as their child’s current communication skills and future support needs. Parents and speech-language pathologists (SLPs) may hold different priorities concerning family SGD training, necessitating ongoing team discussion.

Introduction As primary communication partners, parents play an active role in the uptake of augmentative and alternative communication (AAC) systems within the home, and in supporting children to develop language using an AAC aid [1]. In addition to providing a rich and stimulating environment for language learning, parents of children who use AAC often carry the additional responsibilities of maintaining and updating the AAC system to match their child’s evolving communication needs [2–4]. Further, they frequently

Address for correspondence: Kate Louise Anderson, Discipline of Speech Pathology, Faculty of Health Sciences, University of Sydney, PO Box 170, Lidcombe, NSW 1825, Australia. Tel: +61 435 534 803 (Mobile). E-mail: [email protected]

become the primary advocate and expert for integration of the device into other environments, such as school and community settings [3,5,6]. New AAC systems, particularly high-end speech-generating devices (SGDs – complex AAC programs built into dedicated computer hardware) entail a substantial learning load for new users [1]. Parents of children with a new SGD interviewed in the UK [4,7], the USA [2,6] and Australia [3] have reported increased time-demands and stress associated with mastering, implementing and maintaining the device at home. When parents lack confidence in using the device or feel under-supported by their child’s AAC team, likelihood of device abandonment increases [2,3]. Indeed, families with a new SGD around the world have described limitations in the support they receive from AAC professionals and service providers [2–4,7].

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Training for families of children with a new SGD One primary limitation is the availability of SGD training for families [2–4,6]. The importance placed on device training by families increases with system complexity – parents of children with CCN interviewed by Bailey and colleagues [2] perceived training as a key factor in the successful uptake of more complex SGDs. Despite this, very little research has described or evaluated device training for people who use AAC or their family members. One exception is a survey study [8], which showed improvements in parents’ self-reported competence in operating their child’s communication device immediately following training and again at six-months follow-up. Beyond technology competence, areas frequently addressed in training for families with a new AAC device include the use of responsive interaction strategies and AAC modelling practices [9]. Although empirical research in this area is scant, current evidence suggests that interaction training for parents can result in improved communication outcomes for children using AAC [10]. One partner-implemented intervention for children who use AAC that has been the focus of ongoing research attention is aidedlanguage stimulation (ALgS), an umbrella term used to describe a number of like intervention approaches. In ALgS interventions, partners demonstrate words and sentences on the child’s AAC system during naturalistic interactions, thus modelling aided communication in context [11,12]. Researchers have demonstrated that parent-implemented ALgS leads to positive changes in children’s language skills, including receptive/expressive vocabulary, word combinations and turn-taking [11,13,14]. Children with CCN often adopt a passive role in home interactions due to limitations in expressive communication skills, slower response time and opportunity barriers [12]. To compensate, some caregivers of children with CCN dominate home interactions with directions and requests, and leave few pauses for the child to participate [15]. Responsivity strategies, such as expectant pausing or treating all communication attempts as meaningful, can be effective when used with aided language stimulation techniques. For example, 70 of the 87 parents surveyed by Ferm and colleagues [16] reported changes in their own communication style at home after participating in the Swedish CommAlong training programme, which combines these two approaches. The changes included decreased speed and complexity of their speech, increased patience and attention to the child, and use of expectant delay strategies. Forty-three parents also observed positive changes in their child’s communication at this time. Given there are few specific guidelines advising how or when communication partner interaction strategies should be used, further research is warranted on this topic [9]. As key stakeholders, the relevance of training content to parents has been implicated in both their commitment to and opinion of intervention training programmes [16,17]. Of the 87 parents surveyed by Ferm et al. [16] about their experiences in the CommAlong training programme, 15 made suggestions about content they thought should be removed from the course, while 39 had recommendations for an additional content. Professionals and parents also hold different opinions around family training needs. Cavkaytar and colleagues [18] compared the views of 18 educators and 38 parents on the education and support needs of families of children with intellectual disability. While parents’ and educators’ views were largely parallel, their priority weightings across several parent-training areas differed. Parents also identified additional training targets that educators did not, including training in individualised education planning, and knowledge about tools that could help their child [18]. Parents of children using SGDs in the US [6] also noted that their previous training experiences had insufficiently addressed priority

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areas, such as vocabulary organisation and device programming. Such studies demonstrate the importance of seeking the views of parents, to ascertain needs that may be overlooked by professionals or absent from current training. To date few researchers have investigated which areas parents and AAC therapists regard as priorities for inclusion in training for families with a new device. We aimed to identify the key areas that parents and therapists feel should be addressed in training for families who have just received their first SGD. This investigation is part of a broader study, examining models of support for families with an SGD [3,20].

Methods This study was approved by the University of Sydney Human Research Ethics Committee. Pseudonyms are used throughout to protect participants’ identities. The project consisted of semistructured interviews with seven parents and three novice speechlanguage pathologists (SLPs), as well as focus groups with 10 experienced SLPs. The collection and analysis of data for both SLPs and parents occurred concurrently over a six-month period. Parent participants Eligibility criteria for parents included (1) having a child aged 2–18 years old, who currently or had previously used an SGD as a primary means of communication, and (2) being a fluent English speaker. Therapy staff from several not-for-profit disability service providers across Australia assisted in providing information statements to eligible parents. The study was also advertised on the online AGOSCI listserv (a large international email group connecting people who use, work with, or are interested in AAC). Interested parents were invited to contact the research team for more information. Six Australian parents and one parent in Germany (six mothers and one father) of children who used an SGD agreed to be interviewed for this study. Their children’s diagnoses included cerebral palsy, autism and/or intellectual disability, and all children had used their current SGD for 2 years or less. Parents’ demographic details are summarised in Table 1. Parent interviews Parents completed a single private interview. Due to parents’ limited availability and geographic spread, they were offered a choice to complete their interview on-site (n ¼ 2), over the phone (n ¼ 3) or via video-conference (n ¼ 2). Interviews lasted between 40 and 120 min and were audio recorded. A set of broad questions (see [20]) was used to initiate reflections around SGD training and support. These included questions such as: ‘‘how did you feel about your child getting a communication device?’’ and ‘‘what do you think is the best way to prepare a family for getting a communication device?’’, and were drawn from relevant literature on the topic. In addition, parents were asked specific questions around desired training content and format, to help inform the development of future training and support programmes. The interviews were semi-structured and questions did not follow a set order. The interviewer (first author) also made frequent use of probes (e.g. ‘‘can you tell me more about that’’), and summarising statements (e.g. ‘‘it sounds like that was . . .’’), to explore emerging themes and experiences in depth with participants. Speech-language pathologist participants The study was advertised to SLPs on the AGOSCI Listserv, and via distribution through informal professional networks. Service managers employed by the recruiting service providers also distributed information statements to the SLPs on their

Training content for families with a new SGD

DOI: 10.3109/17483107.2014.967314

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Table 1. Demographic and attendance details for parent participants.

Pseudonym

Child’s diagnosisa

Time with current device

Previous AAC experienceb

Kerry Lee Jo Nat Charlie Alex Kris

CP ASD ASD, ID CP CP CP CP

2 yrs 2 yrs 12 months 4 months 6 months 2 months 12 months

KWS PECS, iPad SGD, light-tech, KWS and PECS SGD, paper-based systems SGD, KWS, paper-based systems A little signing – mostly uses speech SGD, paper-based systems

Interview mode In-person In-person Video-conference Phone Phone Phone Video-conference

a

CP: Cerebral Palsy; ASD: Autism Spectrum Disorder. SGD: Speech Generating Device; KWS: Key Word Signs (manual signing); PECS: Picture Exchange Communication System.

b

Table 2. Demographic and attendance details for SLP participants.

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Pseudonym Mary Libby Sarah Kia Debbie Sally Cathy Emma Tara Lena Alana Vanessa Donna

Group

SGD experience (yrs)

SGD clients supported (approx.)

Participation mode

Experienced Experienced Experienced Experienced Experienced Experienced Experienced Experienced Experienced Experienced Novice Novice Novice

7 8 10 6 9 12 3 8 3 8 1 2 2

9 30 50 30 20 40 2 (+consults) 8 16 15 3 3 3

In-person group In-person group In-person group In-person group In-person group Online group Online group Online group Online group Online group Phone interview In-person interview In-person interview

teams. Fourteen eligible SLPs contacted the research team and 13 were available to participate in this study. All participants were required to be working currently in AAC service provision. SLPs working in Australia are fluent English speakers. Inclusion criteria for experienced SLPs were having three or more years of experience with SGD interventions, and to be currently supervising other clinicians in this field of practice. Novice SLPs were required to have had two years or less experience with SGDs. At the point of recruitment, 10 SLPs self-identified as being ‘‘experienced’’ in SGD service provision, and three as ‘‘novice’’. Demographic details for both SLP groups are presented in Table 2. Experienced SLP focus groups Experienced SLPs participated in either an in-person focus group or an online text-based focus group hosted on a private discussion board (for those living out-of-area). The groups ran for approximately 90 min and each contained five participants. Both groups followed a similar question guide to the parent interviews (e.g. ‘‘how do you think families feel about getting a communication device?’’), and included probes to elicit further detail or clarification, as well as prompts to encourage participation from quieter members. Novice SLP interviews The three novice SLPs were interviewed individually as conflicting schedules did not allow for a group forum to be established. Each interview lasted approximately for 60 min. The same semi-structured approach was adopted as for parent interviews, using a similar question guide.

Data analysis We chose a constructivist grounded theory approach to analyse this data because of its capacity to cope with diverse, multidimensional themes [19]. In addition, narrative analysis was employed for some longer sections of data that followed a story structure, for instance stories of diagnosis or critical events. This additional analysis is described in a previous publication [3]. All interviews and focus groups were transcribed verbatim by the first author, who then open-coded each transcript line-by-line. Open (initial) codes are short, simple summaries of the key themes and issues in a data excerpt [19]. Some of the open codes were concrete, such as ‘‘consulting the device manual’’, while others were more abstract (e.g. ‘‘isolation’’ and ‘‘intimidation’’). In accordance with the iterative nature of grounded theory methods, interviews and groups were conducted in parallel with the coding process [19]. This allowed the first author to probe themes raised early on (e.g. peer support, advocacy and working with schools), with participants in later groups and interviews. Although recruitment rates to the project were slightly lower than initially anticipated, data saturation was achieved towards the end of the data collection process. Open codes were used to paraphrase the experiences, evaluations and suggestions shared by participants. These were then organised under broader summary statements generated by the first author. At this stage, the summary statements were recombined with the discrete raw data units (quotes), and presented to each participant for member checking. Participants were invited to review and alter this interview summary if desired, however no changes were requested. As data collection progressed, the initial codes were compared and contrasted within and between transcripts to identify

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recurring themes as well as differences across participants [19]. These were pooled together as a condensed set of themes, and organised within three primary focus areas, described below. Throughout the coding process, the second author periodically reviewed the open codes (from each transcript) and resulting themes (across participants). The authors discussed any disagreements about codes until a consensus was reached [21].

device, including adding vocabulary and changing page layouts. Parents Charlie and Jo emphasised that hands-on practice was the most effective means of boosting parent confidence: ‘‘. . . just that real ‘‘pick it up, play with it, here’s where your USB ports are. You don’t need to be afraid of this thing . . . Pull the battery out, have a look at it!’’ Just that real sort of hands-on stuff’’ (Charlie – parent).

Results

Making it functional

Three primary focus areas relating to SGD support emerged from this study. The first two areas, which focused on existing SGD support models for Australian families, and the use of alternative support models, such as telepractice and family mentoring, are discussed in previous publications [3,20]. The focus of this paper will be on the third area, SGD training for families, and the various subthemes arising from this focus. Parents and SLPs described a wide range of training needs relevant to families with a new SGD. These included an initial orientation process primarily aimed to encourage SGD acceptance and uptake. Further areas for support included applied home practice strategies, and advice around language teaching, goal setting, advocacy and team-work. Participants frequently drew on their own experiences and observations to illustrate the importance of parents receiving training in each area. Novice and experienced SLPs raised similar concerns and recommendations; where this was not the case, respondents’ levels of experience have been specified in the text.

Three of the parents suggested that timely introduction to ‘‘lifestyle’’ features, for example, the music player, camera, photo album, phone or environmental control unit, was a powerful means to engage children and their families with a new device. As parent Charlie pointed out:

Acceptance and uptake All parents and SLPs in the study identified acceptance of AAC by stakeholders (child, family, carers, education team and intervention team) as a key to successful uptake of a new device. Overcoming parents’ reluctance towards the device was viewed by most participants (five parents and all SLPs) as a key training priority. They noted that as part of this process it was important to address negative attitudes towards AAC from early on. For parents, Lee, Jo and Kerry, early resistance stemmed from myths and misconceptions around AAC use, or device deterrents such as ill-matched or culturally inappropriate voice-settings and vocabulary. For many, lack of competence and confidence with the device had also been a primary barrier to its uptake. Building technology confidence For all parents, gaining confidence in using the device had been a long process. They reported initially feeling intimidated by the programming demands of their new device (including modifying settings and adding content or vocabulary), creating barriers to functional use within the home environment. I didn’t want to go near it when we first got it, didn’t want to touch it . . . My partner fixed everything ‘cause I was just too scared I was going to do something wrong to it. It was just too hard. (Nat – parent) Several parents and SLPs noted that a family’s confidence in using a new device depended in part on their confidence with other technology. As experienced, SLP Tara observed: ‘‘Some families find device programming quite intimidating if technology isn’t one of their strengths’’. Nat, a parent who had been in this situation, suggested that basic computer training may help to get parents started: ‘‘All of these [devices] sort of revolve around computers. . . . so we thought just a basic computer training course would have been good’’. All parents and SLPs also advocated for practical training around basic operation and customisation of the

this can really change your life. This isn’t just a communication thing, this is computer access, remote control . . . Selena uses hers as an MP3 player all the time. Those sorts of things that make it a bit more encompassing than just a communication device. These features can also create opportunities for building on the social closeness between children and their family members, as parent Kerry illustrated: ‘‘she could put photos in there, videos of holidays, things that she’s done in there. Love to do that with her’’. The experienced SLPs in one focus group also reported having used these features as an ice-breaker when introducing the device into the child’s environment. Giving them support around anything that’s going to endear the device to everybody more. So you know, if that be ‘‘Let’s put some music on it’’, or ‘‘let’s show you how you can turn your TV on with it’’, all those things can help families just feel more accepting of it. (Sarah – experienced SLP) In addition to these features, four parents raised the importance of personalising the device for their child, to aid acceptance and promote the use of AAC. A main goal for these parents initially had been learning how to add words and pictures to build a personally relevant vocabulary set. As parent Alex explained: ‘‘[when you] want your child to speak to you for the first time, you would want them to say some personal stuff . . . [for us] that was very important . . .’’. Personalisation also involved assigning a voice and vocabulary that sounded appropriate for their child’s age, gender and cultural background. Parents advocated the teaching of these skills from early on, as many in the study, for example Kerry, were still dependent on support from their therapist to carry out these tasks: . . . the device that she’s ‘‘pick-up’’ in American, ‘‘truck’’. . . . So we like standard . . . I suppose [I] change it.

got is American. So, like you say and we say it’s a ‘‘ute’’ here or a to change it to the Australian need that support to know how to

Managing expectations Parents Kerry, Kris, and Jo had all resisted the idea of AAC at first, because they worried it would stop their child from developing speech. All but one of the SLPs identified this as a key factor for the delay or derailment of device implementation within a home setting. Experienced SLP Cathy commented: ‘‘It seems families want to wait to give ‘speech a chance’, so getting started early is a challenge’’. Parents like Kerry also spoke of this from their own perspective: ‘‘. . . we were hoping that she would

DOI: 10.3109/17483107.2014.967314

just pick it [speech] up listening to us talking and people around her’’. Kerry also reflected on the process of acceptance the family went through over time. You expected so much for your child to do the right thing, the normal thing. But then she get a bit older and you realise yep, the device could help her more, which it did, and yeah we haven’t looked back since then. For Jo, another parent, reassurance from the therapy team about the reasons for pursuing AAC helped to ease early anxieties around Ricky’s speech development.

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I had my doubts, and I think everybody does, about ‘‘does AAC hinder speech development’’. And I was no different from anyone else, who thinks ‘‘why are we doing this when we want him to speak?’’ But [the therapists] were very very good in explaining to me, and gently reminding me at times, why they were doing it in that way. (Jo – parent). One experienced SLP group recommended that realistic messages about the impact of AAC on speech and language development are reinforced at several points throughout a family’s AAC journey, as Kia described: ‘‘reassuring them that it’s [the device] not going to stop their child from talking if their child is going to talk . . .’’ Another ‘‘myth’’ that several experienced SLPs suggested addressing early on was family expectations of AAC as a ‘‘magic wand’’ solution. As parents accepted their child’s disability they formulated new hopes and expectations around the child’s communication, and the potential for a communication device to create change. For example, in one family, AAC was seen as a potential key to ‘‘unlocking’’ the personality of their child with Autism: I’d like to unlock him. I don’t want to say to him ‘‘do you want an apple’’, ‘‘do you want a drink’’ for the rest of his life. I want him to say to me ‘‘Mummy, my head hurts’’. ‘‘Mummy I love you’’. ‘‘Mummy, where’s Nanna?’’. I want him to talk to me. (Lee – parent) All but one SLP expressed concerns that families sometimes set unrealistic initial expectations for the device. Experienced SLP, Emma commented that parents often harbour ‘‘expectations that the device will ‘fix’ the problem and that the child will immediately use it to communicate’’. In response to this, another experienced SLP Cathy stated that an important role of therapists was to ‘‘help families to understand the long term nature of learning to incorporate a SGD into their child’s communication development – not a short term fix’’. Both experienced SLP groups stressed that a vital role of the AAC team was to be honest about the workload and timeframe of AAC interventions from the outset, to help families develop realistic goals and expectations. Experienced SLP, Libby, suggested this could also be supported through the use of videos or case-vignettes: . . . [experienced] families saying ‘‘this is where he started and this is where he is now’’, and ‘‘we found this difficult’’ . . . so that families can see, ‘‘look, it is going to take a lot of work but look what could be the final outcome’’ . . .

Advocacy and teamwork Five parents and all but one SLP recognised the role that parents can play in advocating for SGD use beyond the home

Training content for families with a new SGD

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environment. Parents in the study, such as Jo and Kris, spoke about the skills they had needed for negotiating with schools and therapy teams when they felt that their child’s needs and rights were compromised. Jo, who had described challenging situations with various schools, identified a specific need for: ‘‘Some sort of training that could help people deal with the challenge of working with a school . . . how to get the parent to not just give up, when they hit their head on a brick wall. And how to give them skills to negotiate . . .’’. Jo pointed out the irony that successful AAC interventions often rely heavily on the communication of team members other than the child! ‘‘I mean it’s all about the kid’s communication, but to make AAC successful you need so many different communication skills for dealing with other people’’. Many of the parents and therapists suggested that tips around advocacy and negotiation could be a useful addition to SGD training. They shared a range of strategies that they had found useful, including establishing clear roles within the team from early on, and setting goals with a strong, functional rationale that is easy to justify. Several participants also suggested incorporating SGD use into the child’s individual education plan (IEP). As an experienced SLP, Libby explained: ‘‘I find if it’s in the IEP there’s an obligation on schools to try and kind of work on that goal, so there’s a bit more of a responsibility there’’. Finally, the use of powerful analogies helped to explain the importance of SGD accessibility across all environments. ‘‘Something that we talk about quite frequently is that you take that child’s device away, you take away their voice’’ (Mary – experienced SLP). Understanding communication The second major training focus that participants identified centred on knowledge of communication development and aided language. This included understanding how language is represented on a device, as well as the scope of communication functions and contexts (e.g. basic needs, social, educational, recreational) for which children may require support. Language foundations The experienced SLPs and all but one parent stressed that a solid understanding of the underlying language system, including the rationale for its choice, was critical to getting families ‘‘on board’’ with a new device. As a parent, Lee reflected: I felt like I didn’t get the fundamental training for me to understand or even build on. It was like I was on stilts that were real wobbly, and yet all this information was being piled on top of me. And I wasn’t coping with it, because I didn’t understand down below. For families with MinspeakÕ based devices (Semantic Compactions Systems), foundation knowledge included understanding concepts, such as semantic compaction, the corevocabulary approach and the value of consistent motor-patterns [22]. For other families, gaining consensus around vocabulary layout and categorisation was essential. These areas entailed a substantial, ongoing learning load for some families, as Nat confided: ‘‘We’re struggling with it, remembering where everything is’’. When parents lacked confidence in navigating their child’s device, conversational modelling in everyday use could be frustrating – both for themselves and for the child. when I would have to look through it to find the right key or the right icon to show her, to model it for her, she’d get

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K. L. Anderson et al. frustrated because she wants to have a go straightaway for herself. So while I’m trying to learn myself to get the pathway, she wants to get in. (Kerry – parent)

Eventually, as Lee reflected, uncertainty about the language system on the device could cause parents to abandon home practice all together. ‘‘I’ve kind of lost all motivation for me [to do modelling at home], because I didn’t get that fundamental understanding of the device. And I still don’t have it’’. Several participants cautioned that these concepts should be introduced at a pace led by the family.

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Setting communication goals Both experienced SLP groups pointed out that families require a basic understanding of communication, before they can develop goals for their children across a range of communicative functions. Parent Charlie agreed: ‘‘it wasn’t so much the programming side of things . . . It was more, how do you structure sentences? How does a conversation actually work? . . . I think [me knowing] that would have made a huge difference to how Selena progressed’’. Proposed areas for training included an explanation of communicative competence (encompassing social, strategic, linguistic and operational competence), and how each competency relates to young children developing communication with a new SGD. Participants recommended that training should also cover pointers for managing vocabulary, including information around efficient vocabulary organisation, as well as strategies for identifying priority core and fringe vocabulary items. Core vocabulary items are those used with high frequency by a variety of individuals [23], such as pronouns (e.g. ‘‘I’’, ‘‘your’’) and prepositions (e.g. ‘‘to’’, ‘‘on’’). Fringe vocabulary in contrast refers to words that are specific to an individual, for example, names of people, places and personal interests [23]. In particular, SLPs highlighted the importance of children having access to core words: ‘‘Because people do still get very hung-up on nouns’’ (Sarah – experienced SLP). Parents often adopted the long-term responsibility of updating vocabulary content as their child’s language needs evolved, for example, adding new words for social situations, novel experiences and changing school curriculum. Novice SLP Alana suggested that encouraging families to set a schedule for vocabulary review may assist them to ‘‘keep on top’’ of this task. ‘‘. . . I think you need to make a time, you know once a month or whatever it might be, where you sit down and think about ok, ‘what kinds of things could be useful or really helpful to say?’’’. For parent Jo, this had involved a process of ‘‘profiling’’ – collecting information on the skills and behaviours that Ricky demonstrated on a day-to-day basis: ‘‘It’s all these little details, piecing them together, which lead to deeper understanding’’. Several participants cautioned that in an ideal world, parents should not be expected to manage the onerous tasks of vocabulary management and language goal setting alone. To help parents negotiate goal-setting, SLPs suggested the use of tools, such as goal-setting matrices and collaboration plans. I sometimes use a goal routine matrix . . . and then map out where these goals can be targeted within everyday activities. I’d do this collaboratively with families so they are highly involved in problem solving and planning what they can carry out. (Tara – experienced SLP) Once families have a clear set of goals in mind, training focus shifts to the execution of language teaching within the home environment.

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Teaching language All participants described the important role parents play in teaching children language though augmented means. They advocated the need for training and guidance spanning the full breadth of aided language development, from a child’s first attempts at using the device, through to the development of sophisticated grammatical structures and extended discourse. Early attempts Parents in the study spoke of the excitement they experienced when their child said their first – albeit randomly selected – words on the device. At the same time, these emergent ‘‘nonsense’’ words and sentences could also be disheartening: I think one point where most parents struggle is when the child starts to use the communication aid, and does not produce proper sentences in the first place. . . . I think it’s for the parents a hard time, because you are waiting for your child to speak for such a long time, and then they get this communication aid and even if you know that you need to train everything, you are longing for your child to speak and to say something to you. (Kris – parent) Parents, like Lee and Kris, remembered feeling unsure of how to respond to children’s early communication attempts. As Lee reflected: ‘‘One of the hardest things too that parents think: ‘does my kid understand what he’s saying here?’ . . . ’’. Parent Kris, along with several experienced and one novice SLP, advised that families are forewarned about this sometimes confronting stage of learning and reassured that this is a typical and important process for children learning aided language. Significantly, all of the parents noted that their own children had learned a lot through their early exploratory play: I’ve let Riley have a phenomenal amount of free-play on it, and I think as a result of that . . . he’s found a lot, and done a lot, that I haven’t taught him. So through his own exploration he has come up with a lot and done some quite remarkable things on it . . . (Lee - parent). Experienced SLPs in one group also recommended that parents should be encouraged to treat their child’s communication attempts as ‘‘meaningful’’, to help build an awareness of communication cause-and-effect. In addition, one parent and one novice SLP both suggested introducing the concept of a cueing hierarchy to families at this stage – reassuring them that children typically move through a continuum of support (from hand-over-hand assistance to visual/ verbal cueing), before they are able to use the device independently. So that they [families] don’t think, ‘‘well what’s the point in doing this [physical assistance] because I’m doing it’’, but they need to realise that that’s not the way they’re going to be doing it all the time, and how to progress it (Donna – novice SLP).

Sustaining motivation Despite best intentions from parents, therapists and teachers, progress stagnated if children themselves lacked motivation to use the device. This was a common barrier to effective home practice amongst parents in the study. For example, Kris remembered

Training content for families with a new SGD

DOI: 10.3109/17483107.2014.967314

feeling ‘‘demotivated because I don’t know how to get things running [with Andreas]’’. Nat had also struggled with this issue.

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Even at school [Josh] hated using any devices . . . he’d only want to get on there and play games, and use his hands to get to things. So we could hardly ever get him on to use the communication part of it . . . we’re really surprised with the [new device] how well he goes with it and how much he’s wanting to use it. (Nat – parent) Indeed Nat, Lee and Kris all identified their child’s growing motivation to engage with the device as the catalyst for its successful integration into home life. All parents and SLPs recommended that motivation and how to encourage children to use their device at home should be included in any training package for families. As a novice, SLP Donna pointed out, however, motivators will vary between children, so a variety of approaches should be suggested: ‘‘you can’t just use food all the time [as an example motivator] because it doesn’t work for everybody, and if people only hear the food example and it doesn’t work for their child, then they’re switched off automatically’’. Parents in the study shared some innovative ways of encouraging their child to use the device, ranging from the use of motivating conversation topics (e.g. favourite music celebrities and TV shows, or for one girl the decoration of her new bedroom), to coercion and bribery. They had also observed that the most effective teaching occurred when their child did not realise they were ‘‘working’’. She [student teacher] played with him and really first, tried to understand what he might be interested in to communicate. And then she used the talker in these particular situations. This really motivated Andreas to try, really try hard to use the talker. (Kris – parent) The dominant recommendation from the SLPs was that families follow the child’s lead during language teaching activities, and teach incidentally to ensure that children are optimally engaged and motivated to learn. One experienced SLP group also advised that easy access to highly functional, adaptable words such as ‘‘more’’, ‘‘finished’’, ‘‘want’’, ‘‘like’’ and ‘‘go’’ would facilitate families to provide language modelling ‘‘on the fly’’. Language modelling All SLPs in the study discussed the benefits of instructing parents in aided language stimulation techniques [11,12]. With these generic tools comfortably under their belt, families can maximise language teaching opportunities within everyday activities at home, rather than limiting them to set practice routines and activity-based vocabulary sets. They also reported that many families with a new SGD initially benefit from some ideas and scaffolding for using the device at home. This can include advice about situations in which the device could be used (e.g. in the park/at mealtimes/at bed time), suggested topics of conversation (e.g. what they did at preschool), as well as example scripts of how a conversation using the device might progress during various activities. According to experienced SLP Debbie, specificity is the key: . . . having specific times of the day that they can practise a specific message. That really makes sense for a lot of people. Just starting with one message a day. Then two weeks later a second message, and a third message. Four parents and all but one SLP identified teaching demonstration videos as a powerful source of inspiration ‘‘ . . . so that

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you can come up with ideas for your own child’’ (Kris – parent). Experienced SLP Sarah and parent Charlie both cautioned that video examples of language modelling should feature real families in realistic home-settings, rather than staged clinical examples, in order to boost the confidence of viewing families and make the demonstrated skills appear more achievable. Participants also stressed that training content must be appropriate to children of a range of ages, diagnoses and language capabilities. As parent Jo illustrated: ‘‘[with cerebral palsy] there’s extra challenges with the medical needs and all those things, but the Autism has the extra challenges . . . behaviour can be really challenging and kids can’t sit still, all those kind of things. Very different’’. Training should also encourage parents to adjust their modelling as their child’s learning needs change over time: Also I think as the user becomes more competent, then your [parent] training becomes more about how to expand the language so they’re not plateauing. Whereas in the beginning stages it’s how to get them to use single words and modelling, using the opportunities. (Libby – experienced SLP) Finally, the SLPs advised that training around language teaching should be hands-on and offer guided practice opportunities for novice communication partners. Parents Jo, Kris and Charlie agreed. Jo criticised the majority of device training for relying heavily on didactic and/or text-based learning: I think a lot of training in this area can be too much like . . . ‘‘listen to the teacher, read the book’’. It’s got to be more than that, it’s got to be really involving. And more practical training I think. All participants acknowledged that the journey towards successful SGD use in the home environment could be time consuming, confronting and challenging, and the training areas they identified for novice parents were extensive. Despite this, parents extolled the value of comprehensive training for families with a new SGD. As Jo summed up: To take on all that hard work is sort of daunting. But it was rewarding as well, so it was a journey I enjoyed, learning. . . . What kept me going, what probably keeps everyone going, is to see your child able to use this and able to benefit. It has a big impact on their lives . . .

Discussion Early uptake of a new communication device is of paramount importance to its ongoing acceptance and use within the home environment [1]. In common with other studies, participants described a range of attitude and skill barriers to home device use, including a lack of confidence with SGD technology [2,6,24], the overwhelming complexity of the system [2], a mismatch between the device and the family or child [1,6], as well as belief in AAC myths and misconceptions [1,25]. Parents and SLPs in our study indicated training as a key means to overcoming these barriers, and improving family uptake of SGD technology in the home. Building technology confidence Technical tasks, such as vocabulary addition and software set-up can be onerous and intimidating for families [2,24]. Despite this,

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parents are often left to learn these skills either through trial and error, or from websites and device manuals, rather than direct instruction from an AAC professional [3,6,7]. Furthermore, when training is inadequate families can be left dependent on technological support that is inconsistent or difficult to access [2,3]. Parents and SLPs in our study saw practical parent-targeted training as being the key to breaking down confidence barriers, and encouraging ownership and acceptance of the device by families. They also perceived equipping parents with SGD technology skills as a means to promote greater independence for future programming or troubleshooting. In contrast to the traditionally used formats, parents recommended the use of practical training (e.g. videos and interactive hands-on activities) to establish confidence with device handling, maintenance and programming. Observations such as these may have important implications for the development of productsupport material by SGD manufacturers and disability service providers.

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Allaying fears Common ‘‘myths’’ that parents and professionals may hold about AAC can unnecessarily limit children’s access to SGD technology and interventions [25–27]. The early concerns described by some parents in our study, for instance, that their child was too young for an SGD or that the use of AAC may hinder speech development, mirror parental concerns revealed in previous studies [28]. Parents recommended the provision of information and reassurance to new families around communication prognosis and the impact of AAC on speech development. For families whose concerns are not assuaged by literature or expert advice, working on speech in conjunction with AAC interventions, or establishing AAC in limited contexts initially (e.g. at times when child’s intelligibility is poorest or frustration is rife) may assist families in the transition to aided communication and improve SGD acceptance at home [27]. Supporting realistic expectations Parents in our study expressed similar expectations for AAC outcomes as reported in previous studies [2], including greater independence, and better quality interactions with a wider range of communication partners. As noted by Bailey and colleagues [2], parents’ pressing desires for their children to ‘‘talk to them’’ immediately may over-ride more realistic expectations for the new SGD. Previous authors have recommended that families are forewarned of the time and resources involved in the SGD implementation process [5], and that family capacity to support SGD interventions is established early on [1]. Families with unrealistic expectations may abandon the device all together if these needs are unmet. Participants suggested a role for case studies and family mentoring in helping new families to formulate realistic expectations about the SGD learning process. While the benefits of family mentoring have been discussed in the general disability and child development fields [29], its application for families using SGD technology requires further investigation. Tailoring the device to the family Participants identified auxiliary features (such as music players, cameras, photo albums, internet/phone connectivity and environmental control) as being an enticing drawcard for SGD use at home. Following the recent rise in the availability of mobile technology (e.g. iPads and other mobile devices) as SGD platforms, multifunctionality has become an increasingly achievable feature in these devices [30]. In addition to communication,

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families of young children may use mainstream devices for entertainment, learning and behaviour management purposes [30]. Participants in our study noted that addressing SGD auxiliary functions in early device training may increase the utility and appeal of the device for some families. Nonetheless, it remains important to keep sight of communication as the primary outcome for SGD interventions [30], and recognise that not all device users value or are comfortable with complex, multifunctional features [31]. Participants also stressed the importance of teaching families how to individualise the device, for example, customising voice and speech settings, storing alternative pronunciations, and in particular, adding or modifying vocabulary. Vocabulary needs vary greatly from child to child [32], and having access to functional, culturally and personally appropriate vocabulary is recognised as an important factor in device uptake by children and their families [2,6,24]. Although some SLPs in our study were reluctant to cover vocabulary selection as part of early training for families with a new SGD, the importance placed on this topic by parents justifies this as an area in need of future research. Creating advocates Parents in Bailey and colleagues’ [2] study identified collaborative teaming as a key factor in AAC device success. Families are often expected to educate new communication partners, and advocate for device use beyond the home environment [3,5–7]. Participants in our study described a range of communication and negotiation skills that families draw upon in these situations, and several recommended that parent SGD training also provides some advice and problem solving around these commonly experienced issues. The efficacy or optimum delivery mode of advocacy training for families with a new SGD has not been investigated to date, and warrants future research attention. Creating teachers Interaction and teaching strategies are arguably the best-addressed area within existing parent SGD training literature. Parents and SLPs in our study echoed many of the messages arising from previous research, including the value of aided language modelling and responsive communication styles for supporting children’s communication development [6,11,13,14,33]. Parents in particular shared very specific recommendations around the content and format of training in this area, including the use of practical teaching strategies, such as hands-on exercises and video examples, as well as the provision of walk-through activities and scripts for home use. These suggestions may provide some guidance to training developers, for future directions in this area. Participants also described the challenges faced by parents when their child uses the device without apparent meaning or intent, or in a socially inappropriate manner. Their recommendations for managing these situations were commensurate with established advice: (a) to interpret all communication attempts as if they are meaningful, and (b) to retain problematic or taboo vocabulary items while teaching children the consequence of using these inappropriately [25]. Responsivity strategies have been included in many published examples of parent training for children with disability [8,16,33,34]. The importance placed by participants in our study on learning these strategies reinforces the need for continued training and support in this area. Nonetheless, parents and SLPs anticipated a number of areas where a generic training approach may fall short, such as troubleshooting children’s motivation and translating teaching techniques to everyday contexts. They cautioned that individualised support would ideally accompany any training that families received in this area.

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Finally, in addition to specific language teaching techniques, participants expressed the importance for families to understand broader concepts, such as AAC foundations, communicative competence and the scope of communication functions, to ensure that children are maximally supported across all aspects of their language development. Participants in our study, as in others [4], explained that knowledge around the mechanics of language and communication should not be assumed, and that lack of knowledge in these foundation areas could alienate parents from the AAC team.

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Limitations of this study While these results may provide insight into training needs for families with a new device, the findings of this study cannot be generalised to all families with an SGD. Significant limitations included the small number of participants and the unequal representation of fathers (one) versus mothers (six) in the parent cohort, as it has been reported that training and support priorities differ between mothers and fathers of children using AAC [35]. Also, as cerebral palsy and autism were the dominant diagnoses represented in the study, training areas relevant to parents of children with other diagnoses, including acquired communication disability, additional sensory impairments and complex access issues (e.g. those requiring eye-gaze access or switch scanning), may not have been identified.

Conclusion Parents and SLPs in this study identified a large range of training areas potentially relevant to families of children with a new SGD. Nonetheless, families vary in their willingness and capacity to take on SGD responsibilities and participate in training [7]. In addition, families will come to the table with a unique set of strengths, interests, priorities and previous experiences [1,2,6,27]. As such, the learning areas identified by this research should not be viewed as a finite, obligatory list but rather as a prompt for areas that warrant consideration by each family and their AAC team. Adopting a family-led approach could help to ensure that parents’ questions around the new SGD are answered in a satisfactory and timely manner, and that training is in line with family need and capacity. In addition, while generic training may offer some efficiency gains to over-stretched services, concerns from the parents and SLPs in our study suggest that some degree of individualised support will always be required. Although there was a large overlap between the recommendations of parents and SLPs around training content, the differences that were noted (e.g. parents’ prioritisation of areas, such as auxiliary device features, device customisation and vocabulary selection) illustrate the importance of considering the opinions of all stakeholders when developing family training content. Finally, participants discussed a need for training that went beyond direct SGD skills, to include foundation language and AAC knowledge, as well as strategies for AAC advocacy. As these training targets have not been reported in the literature to date, this is an area warranting future research.

Acknowledgements The authors wish to acknowledge the time generously donated by the parents and SLPs involved in this study, as well as the assistance of service providers during recruitment and data collection.

Declaration of interest The authors are solely responsible for the writing of this paper. None of the authors have any interests to declare.

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The first author wishes to thank Speech Pathology Australia and the National Health and Medical Research Council for their scholarship support of this project.

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