International Journal of Speech-Language Pathology

ISSN: 1754-9507 (Print) 1754-9515 (Online) Journal homepage: http://www.tandfonline.com/loi/iasl20

Alternative service delivery models for families with a new speech generating device: Perspectives of parents and therapists Kate Louise Anderson, Susan Balandin & Roger James Stancliffe To cite this article: Kate Louise Anderson, Susan Balandin & Roger James Stancliffe (2015) Alternative service delivery models for families with a new speech generating device: Perspectives of parents and therapists, International Journal of Speech-Language Pathology, 17:2, 185-195, DOI: 10.3109/17549507.2014.979876 To link to this article: http://dx.doi.org/10.3109/17549507.2014.979876

Published online: 04 Dec 2014.

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Date: 06 November 2015, At: 00:40

International Journal of Speech-Language Pathology, 2015; 17(2): 185–195

Alternative service delivery models for families with a new speech generating device: Perspectives of parents and therapists

KATE LOUISE ANDERSON1, SUSAN BALANDIN2 & ROGER JAMES STANCLIFFE3

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1Discipline

of Speech Pathology, Faculty of Health Sciences, University of Sydney, Lidcombe, Australia, 2Faculty of Health, Deakin University, Burwood, Melbourne, Australia, and 3Centre for Disability Research and Policy, University of Sydney, Lidcombe, Australia

Abstract Purpose: Research has revealed limitations in the provision of in-person services to families with a new speech generating device (SGD), both in Australia and overseas. Alternative service models such as parent training, peer support and telepractice may offer a solution, but their use with this population has not been researched to date. Method: Using interviews and focus groups, this study explored the experiences and opinions of 13 speech-language pathologists and seven parents regarding alternatives to in-person support and training for families with a new SGD. Data were analysed using grounded theory. Themes explored in this paper include the benefits and drawbacks of alternative service models as well as participants’ suggestions for the optimal implementation of these approaches. Result: Participants confirmed the utility of alternative service models, particularly for rural/remote and underserviced clients. Benefits of these models included reduced travel time for families and therapists, as well as enhanced information access, support and advocacy for parents. Conclusion: Participants viewed the provision of ongoing professional support to families as critical, regardless of service modality. Additional issues arising from this study include the need for development of organizational policies, resources and training infrastructure to support the implementation of these alternative service models.

Keywords: Augmentative and alternative communication (AAC), service delivery, telepractice

Introduction Speech Generating Devices (SGDs) can be challenging for new users and their communication partners, due to the often-complex set-up, maintenance and programming required (Bailey, Parette, Stoner, Angell, & Carroll, 2006; Baxter, Enderby, Evans, & Judge, 2012; McCall, Marková, Murphy, Moodie, & Collins, 1997). Speech-language pathology (SLP) services for young children learning to use a device necessarily incorporate an intervention component to support children’s aided language development, as well as measures to support communication partners, including training and guidance around using the device at home (Beukelman & Mirenda, 2013). While some parents of children with a new SGD have positive experiences of service, others in Australia, the US and the UK have described barriers to successful device uptake including inadequate training around the SGD technology, a shortage of clinical experts and the absence of long-term therapy support from service providers (Anderson, Balandin,

& Stancliffe, 2013; Baxter et al., 2012; Marshall & Goldbart, 2008; McNaughton, Rackensperger, Benedek-Wood, Krezman, Williams, & Light, 2008). Such difficulties can increase stress and timedemands for family members (Anderson et al., 2013; Bailey et al., 2006) and are a factor in device abandonment (Johnson, Inglebret, Jones, & Ray, 2006). In the search for more accessible and sustainable solutions to in-person service, researchers in AAC have turned their attention towards alternative service models including parent-implemented interventions, peer support and tele-AAC (i.e., the use of tele-practice strategies to deliver AAC services at a distance) (Anderson et al., 2012; Hall & Boisvert, 2014). Such models are currently used to address service gaps in disability and speech-language pathology (Parette, Meadan, Doubet, & Hess, 2010; Reynolds, Vick, & Haak, 2009; Roberts & Kaiser, 2011; Wilson, Lincoln, & Onslow, 2002) and show promise for addressing limitations in existing, in-person SGD support models.

Correspondence: Ms Kate Anderson, University of Sydney, Discipline of Speech Pathology, Faculty of Health Sciences, PO Box 170, Lidcombe, 1825 Australia. Email: [email protected] ISSN 1754-9507 print/ISSN 1754-9515 online © 2014 The Speech Pathology Association of Australia Limited Published by Informa UK, Ltd. DOI: 10.3109/17549507.2014.979876

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In-person support for families with new SGD technology Australian speech language pathologists (SLPs) have identified several challenges to the provision of one-on-one, in-person services for families with a new device (Iacono & Cameron, 2009). These include a lack of clinical expertise and experience of some clinicians working with SGDs and restrictions necessitated by large caseloads and finite resources (Iacono & Cameron, 2009). For families in rural/remote areas, service isolation is an additional factor (Anderson et al., 2013; Wilson et al., 2002). Researchers in New Zealand (Sutherland, Gillon, & Yoder, 2005), the UK (Bush, Lock, & Scott, 2008) and the US (Kent-Walsh, Stark, & Binger, 2008) have noted similar issues affecting SGD service delivery. One proposed solution is to train and support parents in the role of primary SGD interventionist for their children. Parent-implemented SGD interventions Parents of children using AAC are often encouraged to use aided-language stimulation (AAC modelling) during home interactions. This intervention approach involves partners demonstrating or highlighting relevant words and sentences on the child’s AAC system during conversation or play (Beukelman and Mirenda, 2013). AAC modelling can be used with SGDs, as well as low-tech AAC systems. Outcomes from studies of parent-implemented AAC modelling indicate positive change across language domains including turn-taking, vocabulary knowledge and use, and word combinations (e.g., Kent-Walsh, Binger, & Malani, 2010; Rosa-Lugo & Kent-Walsh, 2008). In a randomized study of 68 toddlers with developmental delays, Romski, Sevcik, Adamson, Smith, Barker, and Bakeman (2010) compared outcomes of three parent-implemented language stimulation approaches (spoken language input only, aided language input and aided production assistance). Both parent-implemented aided language stimulation conditions benefitted children’s spoken and augmented vocabulary and were more effective than speech input alone (Romski et al., 2010). Nonetheless, the efficacy of parent-implemented AAC interventions such as these, compared with clinician-implemented approaches, remains unclear. It is also largely unknown how parents and SLPs view parent-implemented therapy for children using SGDs, or the training that precedes parental intervention. However, parents who participated in the Swedish ComAlong early-AAC parenttraining program (Ferm, Andersson, Broberg, Liljegren, & Thunberg, 2011) reported that the training afforded them greater confidence and independence in managing their child’s home intervention.

Peer support for families with an SGD Parent-to-parent support can offer solidarity and empathy to families (Carter, Cummings, & Cooper, 2007; Davies & Hall, 2005). Networks of families can share “insider” information about services or equipment and exchange strategies for managing children’s needs (Carter et al., 2007; Davies & Hall, 2005). Although peer support has not been investigated specifically in families of children using AAC, these parents have also described benefits to information sharing and peer support (Ferm et al., 2011; Marshall & Goldbart, 2008). Peer support is frequently sought online. In Parette et al.’s (2010) survey of parents of young children with a disability, 56% reported using the Internet for social support and 67% to communicate with other parents. Parent-to-parent support may also occur incidentally, for example while sharing experiences with other families during group therapy or training (e.g., Ferm et al., 2011). Heterogeneous and homogenous peer mixtures offer different benefits to families. Diversity can help to emphasize children’s individuality rather than defining them by a common diagnosis (Ferm et al., 2011); however, some parents find such diversity challenging if it highlights gaps in their child’s development (Ferm et al., 2011). An additional concern is that seeing older children or those with severe disability may generate anxiety for parents regarding their own child’s future (Davies & Hall, 2005). Further research is required to determine the scope of current peer-networking preferences, practices and outcomes for families who use or need an SGD. Tele-AAC and remote support for families with an SGD Telepractice may be a cost-effective means to address SLP service inequity in rural/remote or under-serviced areas (Wilson et al., 2002). Researchers have used it successfully to diagnose, treat and support a range of paediatric and adult SLP clients (Reynolds et al., 2009). Tele-AAC is an emerging and largely unresearched practice (Anderson, Boisvert, Doneski-Nicol, Gutmann, Hall, Morelock, et al., 2012; Hall & Boisvert, 2014). Early explorations of teleAAC have indicated positive outcomes for both consumers and clinicians. Studies in tele-AAC have included the use of video-conferencing for initial SGD assessment (Styles, 2008), remote SGD training for adult clients (Burns, Crislip, Daviou, Temkiri, Vesmarovich, Anshuntz, et al., 1998) and SLPs (Quinn, Beukelman, & Thiessen, 2011), and remotely-guided AAC modelling for children with an SGD (Hall, 2013). Telepractice in speech-language pathology can encompass a wide range of alternative service modes. In Australia, telephone and email are the most common telepractice media used by SLPs, followed by

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video-conferencing (Hill & Miller, 2012). Clinical advantages of video-conferencing include enhanced non-verbal communication (Abbass, Arthey, Elliott, Fedak, Nowoweiski, Markovski, et al., 2011) and availability of audio and visual information to aid diagnosis (Constantinescu, Theodoros, Russell, Ward, Wilson, & Wootton, 2010). Unfortunately, access to fast and reliable video-conferencing is not always possible, particularly in rural/remote areas (Dunkley, Pattie, Wilson, & McAllister, 2010). SLPs may also under-utilize viable telepractice options due to concerns about client ICT access (Dunkley et al., 2010). Despite this, rural Australians have indicated their receptiveness to telepractice and have better access to ICT than expected by rural SLPs, with the majority reporting access to computer, Internet and email technology (Dunkley et al., 2010). The use of telepractice in SLP has both advantages and challenges, but currently the extent to which these might apply when supporting families with a new SGD is unknown. As evident in previous studies (Antonini, Raj, Oberjohn, & Wade, 2012; Dunkley et al., 2010), the attitudes of clinicians and consumers towards a service delivery model are known to influence its uptake and ultimate success. Despite this, the perspectives of primary stakeholders such as parents and SLPs towards alternative support models for families with a new device remain largely unresearched. Potential applications of these service models and the range of factors that may facilitate or impede their future implementation with this population are also unknown. Accordingly, the purpose of this study was to explore parents’ and SLPs’ experiences of and opinions towards alternative service delivery methods for families of children who use an SGD. The resulting data were also intended to inform the development of an online training and support package for children with a new SGD, which is described elsewhere (Anderson, Balandin, Stancliffe, & Layfield, 2014).

Method This study was approved by the University of Sydney Human Research Ethics Committee. Pseudonyms are used to protect the identity of participants and their family members. Recruitment SLPs and parents were recruited through three Australian not-for-profit disability service providers. The study was also advertised on the AGOSCI email list, a national list connecting people who use AAC, their family members and AAC professionals (http://www.agosci.org.au/list.htm). Interested SLPs and parents were invited to contact the researchers. SLP participants Three “novice” (⬍ 2 years SGD experience) and 10 “experienced” (3–12 years) SLPs participated (Table I). Inclusion criteria stipulated that the SLPs were currently providing SGD services to children with disability and that they had experience with at least one Minspeak-based SGD, as this was the system used in the resulting training and support package. In addition, the “experienced’” SLPs were required to have provided clinical supervision or training to other SLPs around SGDs. Parent participants Six Australian and one German parent participated (see Table II). The inclusion criterion was being a primary caregiver to a child aged 2–18 years who currently or previously used an SGD for communication. As with the SLPs, parents were required to have experience with at least one Minspeak-based SGD; however, the reported range of experiences with other SGDs varied.

Table I. Demographic characteristics of professionals.

Pseudonym Libby (Exp.) Sarah (Exp.) Mary (Exp.) Kia (Exp.) Debbie (Exp.) Lena (Exp.) Emma (Exp.) Sally (Exp.) Cathy (Exp.) Tara (Exp.) Vanessa (Nov.) Donna (Nov.) Alana (Nov.)

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Location

SGD experience (years)

Caseload

Attendance

Metropolitan Metropolitan Metropolitan Metropolitan Metropolitan Metropolitan Rural Metropolitan Metropolitan Metropolitan Metropolitan Metropolitan (prev. rural) Metropolitan

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

Mixed CP Mixed Mixed CP Mixed CP CP CP Mixed Mixed Mixed CP

FG – in-person FG – in-person FG – in-person FG – in-person FG – in-person FG – online FG – online FG – online FG – online FG – online I – in-person I – in-person I - phone

CP, Cerebral Palsy; I, Interview; FG, Focus group; Exp., experienced; Nov., novice.

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K. Anderson et al. Table II. Demographic characteristics of parents.

Pseudonym Lee Kerry Alex Charlie Nat Jo Kris

Location

Child’s diagnosis

Metropolitan Metropolitan Metropolitan Rural Metropolitan (prev. rural) Metropolitan Metropolitan (Germany)

ASD, CP CP CP CP CP ASD CP

Years with current SGD 2 2 ⬍1 ⬍1 ⬍1 1 1

Interview mode In-person In-person Phone Phone Phone Videoconference Videoconference

CP, Cerebral Palsy; ASD, Autism Spectrum Disorder.

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Data collection Experienced SLPs attended one of two 90-minute focus groups (five SLPs per group). One focus group was conducted in-person and the other online using a gated, text-only discussion forum, to cater for rural and interstate participants. Parents and novice SLPs were interviewed individually; interviews lasted 30–120 minutes. Three parents and one SLP chose to complete their interview by phone and two parents via videoconference, due to location or scheduling requirements. Interviews and focus groups followed a semistructured format. The interviewer/group facilitator (first author) introduced topics through a series of open questions (see initial interview guide in the Appendix). These were derived from concepts recurrent in SGD support literature, as well as specific questions to inform development of the future online package. Interviews were conducted in parallel with the coding process, allowing the interviewer to probe issues arising from earlier data. For example, the theme of peer support was raised by the first SLP focus group and was included as a topic area in all subsequent groups and interviews. Probes (e.g., “can you tell me more about that?”) and clarifying statements (e.g., “it sounds like that experience was frustrating …”) were used during interviews to gain additional detail. Individual prompts and summary statements were also used to stimulate discussion amongst focus group members. For example, during the in-person SLP group, the following summary was offered: “it sounds like that’s the area you feel you are able to build on and work on [providing information and support], but less so that one-onone intervention that, Sarah, you were talking about”. Use of these statements resulted in confirmation, clarification or extrapolation from one or more participants. The in-person focus group and all interviews were audio-recorded and transcribed verbatim, including laughter, pauses and sighs. Along with the text content from the online group, these data were analysed using a constructivist grounded theory approach (Charmaz, 2006), chosen because it allows the researcher to compare and contrast complex, multi-level themes in detail. Although participant numbers were small, this approach was deemed most

suitable given the diversity of the cohort and scope of topics under investigation. In addition, the systematic and iterative approach of the grounded theory method is recommended when the researchers have a close connection to the field, as was the case in this study. The research team consisted of two SLPs and one psychologist and all had worked in the areas of disability and/or AAC. Data analysis Each transcript was open coded by the first author. Open codes included personal, explanatory or background information, event recounts and general observations; as well as participants’ emotional reactions to their own experiences. As open coding progressed, the first author generated memos alongside the codes to support reflection on the latent themes and patterns emerging from the growing data set (Charmaz, 2006). Once open coding was completed for all transcripts, the first author condensed the codes into a smaller set of overarching themes, through a process of constant comparison within and between data-sets. This process was completed for the parent and SLP data separately and later combined in a final document. The final parent and SLP analyses were sectioned into higher-order themes that reflected main focus areas, such as “remote support” and “parent training”. Much of the data exploring parents’ initial experiences of having an SGD was delivered as long narratives and this data underwent some additional narrative-analysis procedures. This re-storying method, and most of these themes have been described in a separate publication (Anderson et al., 2014). Strategies for credibility In addition to the use of summarizing statements for clarification during interviews, two additional measures, co-coding and member checking, were implemented to enhance credibility. First, to reduce the influence of researcher bias, transcripts were co-coded by the second author and differences in coding were discussed until consensus was reached (Padgett, 2012). Member-checks were conducted at

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two points in the research process. After open-coding, participants were given a copy of their individual analysis summaries and invited to make suggestions, alterations or additions to these. No changes were requested. Once analysis was complete, participants were also provided with a summary of the combined research findings. Several participants confirmed that these accurately reflected their own experiences and perspectives and none contested the findings.

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Results Our findings indicated that various alternative support formats are offered to families with a new SGD, beyond traditional one-on-one support. All participants viewed these alternatives as viable and useful. Frequently, participants mentioned using parentimplemented therapy and discussed the importance of accessible parent training to enable this. Participants also described auxiliary service models including peer support networks, group information forums and telepractice. Participants had differing experiences with these models and expressed various opinions on their viability and suitability. Supporting and training parents as interventionists Parents and SLPs identified family training in areas such as technology competence and aided language modelling as critical to successful home-based SGD interventions. As SLP Tara stated: “having a focus on supporting families to understand how to embed device use into their everyday lives is important”. Issues that participants identified as relevant to parent training included training access, format, delivery and professional guidance. Parent access to in-person training Typically, participants received in-person training through external workshops (e.g., those hosted by device manufacturers) or as an additional feature of therapy groups or AAC camps (offered infrequently by disability service providers). Parents reported benefits to in-person group training, such as hearing other people’s questions and having hands-on exposure to different communication devices. One disadvantage was limited time to ask individual questions: “So I prefer the one-on-one I guess, for me to sit down and actually nail the device … my time to just talk about what I want to do”. (Kerry; parent). Residential AAC camps offered valuable learning opportunities but left some parents like Kerry overwhelmed by new information: “it was just so much to learn and there was … not enough time to just be there individually, to get all the information that you need”. Overall, parents noted that they sometimes felt excluded from face-to-face training. Charlie commented: “I tend to end up in a room full of speech

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therapists or OTs or teachers … I don’t actually think there’s a lot aimed at being a parent and supporting your child”. As another parent Jo pointed out: “… they’re not advertising to parents and they’re not allowing parents to attend”. Jo observed this trend across various device manufacturers’ and service providers’ training and attributed it to a lack of recognition for parent potential. Jo suggested that improved access to training required a change in professional attitudes: “actually understanding that the parents need to be in the key role and not pretending that they can do it without them”. Even when inperson training was available, parents found it challenging to fit around the busy family schedule, as Kerry pointed out: “… with the other two kids and plus Joshua—it’s hard to juggle to get to the workshop”. Parents stated that accessible, family-targeted online learning resources could address current training challenges. Parent access to online training. Some parents preferred to complete online training while children were at school; working parents reported that the only time available was after their children were in bed. Some families estimated that they would spend up to 2 hours a day on training, several times a week, providing there were no distractions. Others said that 10 or 15 minutes a night was as much as they could realistically achieve. Alex worried that this time was inadequate to gain true competence: “Realistically, I’d probably be able to do you know, 15 minutes every couple of days. But knowing how complex the device is, you really do need at least half an hour, every couple of days”. Parents also emphasized the value and importance of parent choice—being able to choose relevant topics and work through content at their own pace. SLPs also saw flexibility as potentially being a key advantage of online family training. For example, experienced therapist Sally advocated for: “webinars that can be accessed in families’ preferred time”, as opposed to live webinars with a set schedule. Training guidance and support. Parents spoke about the importance of ongoing professional “supervision” to encourage them through any training. They suggested that set times for contact and building training into the home routine were strategies to help families persevere with long-term training. Kerry noted: “I guess for me if I set a routine I’ll stick to the routine …”. SLPs also perceived supervision and guidance as integral to self-directed training for families: we want families to have the information but our optimum would be somebody supporting them going through that information in a timely way, rather than a family just getting the package. (Libby; SLP)

SLPs acknowledged the breadth of useful AAC learning resources already available to parents online:

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“… websites with AAC training materials, training software such as PASS, on-line support groups. These are important, and can form part of the support that families receive upon getting an SGD” (Lena; SLP). Nonetheless, they warned that not all web-based resources are equal in quality or applicable to every family. SLP Cathy explained: “some families who are active in searching the web are finding resources, but how they are implemented and if they are appropriate or not could be debated”. SLPs recommended adopting a team-approach to identifying and using online resources, to ensure that therapists and family members are working off the same information. Learning aids. When considering the format of online training, several parents and SLPs suggested that short training videos would be more appropriate and accessible for busy families than text-based training or manuals. If there are these videos and they are motivating, then I would be able to put them somewhere in the day, because I want to improve Andreas’ communication abilities. … I could use [commuting] time in the train for vocabulary training ... Or I decide to watch a video during dinner or something like that. (Kris; parent)

Parents also benefitted from memory aids (e.g., summary sheets) for use during home practice. These gave an overview of the new skills learned in therapy sessions, such as new vocabulary sequences or programming procedures. For Alex, this made learning about the device less onerous and intimidating: “… you do a little bit at a time”. Parents recommended that printout sheets be provided for all online learning content, to help families consolidate new skills. Above all, parents recommended that training content should be easy to understand, with low literacy and language demands. For example, Charlie cautioned against technical jargon: “When I was reading through [past AAC training] I was like ‘oh, do I have to remember what a pronoun is? I can’t remember’ … And I guess you don’t want to ostracise anyone by doing that”. Parents and SLPs agreed that easily accessible language would help to maximize uptake and prevent parents from feeling alienated. In addition, one SLP focus group proposed that content should ideally cater for families from non-English speaking backgrounds or low literacy skills, as well as those with language, learning or sensory impairments. Five participants also suggested the inclusion of features such as case-studies and self-test quizzes to keep learners engaged. Finally, participants recommended including a diversity of reallife examples to accommodate the wide range of ages, diagnoses, interests and skills of the target children and families.

Value of training for families. A desire to help their child was the primary motivation for parents to complete training. As Alex, stated: “obviously if you saw that it worked and your daughter you know, used it properly and she was starting to use sentences, then obviously that would encourage you”. To enhance practicality, participants suggested the inclusion of quick tips and shortcuts (e.g., how to hide/show target keys or how to add pictures and music) and examples of motivating learning activities to use at home: “that will help them apply that [information], so that it actually makes sense …” (Vanessa; SLP). An additional motivator that one parent, Jo, suggested was the kudos and respect that comes from completing specialized training: … the school and other people are constantly thinking: “… You’re just a parent, what do you think you know?” … the certificate means something and gives [parents] a sense that they’ve achieved that. And gives them something they can show to the school or to the other people who they want to get on board on the team.

Peer support for families with a new SGD SLPs, including rural therapist Emma, had in the past encouraged: “… local families with SGDs to link in together … and that works too most of the time as a form of support and sharing ideas”. Experienced families had been a rich source of advice on device maintenance, programming and use for new parents unfamiliar with the technology. Working co-operatively, groups of parents were more able to keep abreast of service changes: I have a couple of good friends who are really good at looking up information. I know the policy and how things work and how they’re supposed to go; they’re the information gurus. And between us we’ve got quite a good share of information. (Charlie; parent)

Commonly described avenues for establishing peer support between families included servicebased and online parent-to-parent support groups and email lists (e.g., AGOSCI). Less formal peer support networks also existed within social media. Some parents had little or no knowledge of these informal forums, whilst others, like Charlie, used them avidly: “I guess, in terms of being able to access stuff—I am on every single email group, facebook group, newsletter, that I can possibly get my hands on”. Peer encounters at AAC camps also allowed parents to understand the experiences of other families and share advice on programming, resources and home practice. Parent Lee reflected that: “… even going to the camp this year you know, I met some families that were very similar to us. And it was so refreshing to see that”. However, attending heterogeneous groups could be frustrating to parents who were at very different stages:

Alternative SGD service delivery I don’t want to be sitting in some classroom, listening to a parent whinge about the fact that their kid doesn’t sleep and that they’re having toileting issues. ... I’ve been through that ... I think that one size definitely doesn’t fit all. (Lee; parent)

Parents viewed camp encounters as valuable for the children who used a device, helping them to develop friendships and share experiences. As Kerry explained: “Mia enjoyed [camp] and she uses it [device] a lot there too. … I suppose she make friends as well too, new friends”.

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Telepractice and remote support All of the SLPs had used some telepractice or remote support strategies, either as an adjunct to regular in-person therapy or for follow-up purposes. All parents had also experienced some remote support. Implementing telepractice. For metropolitan SLPs, telepractice mostly involved emails or phone calls with families, as described by novice SLP Alana: “we stay in touch via email and talk about what we’ve been doing, and what’s happening at home, and have the goals changed at home—is there anything that she [clients’ mum] particularly wants me to work on [at school] ...”. Although several therapists suggested the use of remote feedback on home-practice videos, no therapist reported using this strategy in their current practice. The two rural SLPs had employed various remote support strategies, including exchanging USB drives or therapy resources with families by post. Donna had used on-site computer experts at a clients’ school: “… so I don’t have to do all of the nuts-and-bolts stuff with it”. SLPs found that rural/remote families familiar with service limitations were especially amenable to telepractice. As Donna explained: “they’re well aware of that time-commitment as well, so they’ve been really accommodating as well and happy with the phone-support”. Emma noted that many of her rural outreach clients: “can be more proactive and less reliant … when people know you won’t be back for a while they then have to try things for themselves”. Although remote support was considered useful in many circumstances, SLPs stressed the importance of families having some in-person time (e.g., an intensive half-day session), at least to “get them started” with the device. As Donna explained: “… you can’t post them the device and then do it [telepractice sessions] … ‘cause people would just open the box and freak out”. SLPs viewed telepractice as an appropriate supplement to, but not replacement for, in-person services. Moreover, they argued that time spent setting up telepractice equipment or reviewing videos may be better spent as a home visit. As Libby pointed out, for local clients: “I’d rather just go out and do the home visit than provide the feedback online”.

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SLPs considered remote support models most useful for maintenance and client follow-up, where sustained in-person service was not always viable. They saw potential for telepractice to provide ongoing input beyond a standard service plan, for example to monitor goal progress and check that the device is still operational and relevant. However, SLPs from organizations without an established follow-up policy foresaw challenges in providing these services. In particular, parameters such as which clients would receive follow-up and how much support could be offered would depend on therapist capacity. Alana, a novice SLP, illustrated this dilemma: I’d worry about where does the end point lie. Are you going to have to do this with every client that you discharge or is it only with the clients that need it, side the benefits of telepractice, including reduced travel time and improved flexibility and then you think “well, they all kind of need it!”

Also, SLPs flagged several potential drawbacks. These included slower development of rapport, a greater chance of families becoming overwhelmed, and the inability to provide hands-on instruction and set-up assistance with unfamiliar technology. SLPs noted that some methods of remote support and parent feedback were easier to administer than others. For example, emails could be exchanged regularly, but providing feedback on a recorded session was considered “a much bigger ask”. SLPs also described logistical barriers to telepractice, such as the availability and set-up of the technology. However, they saw these barriers decreasing with the evolution of mainstream technology (e.g., the prevalence of video-phones) and increase in technology literacy. For instance, Mary had suggested to some families: “… ‘well, you’ve got an iPhone, use your iPhone to take that video or to take that photo or whatever’, and they go: ‘oh, never would have thought about that before’”. Indeed, parents’ openness to telepractice for SGD support was evident in their own comments. Receiving telepractice and remote support. Parents had limited experience with telepractice, besides phone or email contact with therapists and suppliers. Like the SLPs, parents preferred in-person therapy to remote services where possible, because they found it easier to understand explanations about device programming and home practice activities when everyone was in the same room. However, parents agreed that remote support (online or phone support) is helpful when families are unable to attend a therapy centre because of location, waiting lists or logistical/transport difficulties. Parents also viewed telepractice video link-ups as a “fly-on-the-wall” opportunity for therapists to observe the child at home. For example, Kim wanted Mia’s therapists to see how frustrated she becomes during language modelling at home:

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[Mia] wants to do it herself before she gets frustrated over it. So I think a video-link would be a good idea, to see, at least the therapist could see the child working on the device. Plus, [see] the parents trying to teach the kid ... I think that would be a good idea.

Overall, parents were amenable to telepractice and identified fewer barriers than the SLPs. Parents and therapists stressed that alternative service models such as telepractice, peer support and self-directed training should remain as auxiliary support models to in-person support, except where in-person services are unavailable.

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Discussion Where the desired intensity of in-person service had not been possible, many SLPs and parents in the current study had experimented with alternative service models including parent-implemented intervention and training, peer-support networks, group services, intensive therapy camps and telepractice. The findings provide insight into the potential benefits and challenges of implementing these alternative models with families who are new to SGD technology. Supporting and training parents as interventionists Most parents and therapists in our study perceived that online, on-demand training was more tenable than scheduled, in-person training, especially for busy families or those living far from training centres. Availability of on-demand training is particularly pertinent in Australia, where time-zone differences preclude access to live webinars offered by international device companies. Parents in other studies (Antonini et al., 2012; Parette et al., 2010) have also identified convenience and flexibility as key advantages of online training, although Bert, Farris, and Borkowski (2008) demonstrated that parents who were likely to use web-based training were those with higher education levels and those who reported higher parenting efficacy. Other parents including those identified as “high-risk” preferred to attend inperson training (Bert et al., 2008). Technology competence may not play a role in parents’ adherence to online training schedules (Antonini et al., 2012), although access to the necessary technology is important. Realistically the demographic and parenting profile of families with a new SGD will encompass families with varied skills and technology access situations. Consequently, family SGD training may need to be offered as both online and in-person formats to accommodate the full scope of learning preferences. Parents and SLPs in our study agreed that a generic communication partner training package coupled with technology modules for specific devices could be beneficial. Clinicians may guide

families through these packages without requiring expert knowledge of each device, easing the volume of take-home work and preparation that implementing an unfamiliar device typically entails for SLPs (Bush et al., 2008; Iacono & Cameron, 2009). As Ferm et al. (2011) discovered, families of children using AAC have diverse training content requirements. Our participants viewed online, self-selected training as a potential solution, allowing families to work through the lesson content at their own pace and according to their own priorities. In addition, they saw a need for training to be immediately applicable and personally relevant to each family. This concern mirrors the disengagement patterns observed in other studies when the offered content was not relevant to their child (e.g. Antonini et al., 2012). Participants in our study suggested that providing a range of example videos from children with different skills and diagnoses, along with optional activity and teaching ideas appropriate for children at varying stages of SGD mastery, may help to address this issue. Parents and SLPs emphasized the role of professionals in helping to motivate families through training, as well as assisting families to evaluate information sources and to consolidate and apply new skills. Contact with a professional during parent training appears to hold advantages over independent, self-directed training (Keen, Couzens, Muspratt, & Rodger, 2010), with larger increases in self-efficacy and decreases in parental stress. Keen et al. suggested that the professional plays an important role in assisting families apply new information. Despite the plethora of self-guided online information available on the topic of SGD technology, findings such as these support the inclusion of ongoing professional guidance as a feature of any SGD service model. As illustrated by several participants in our study, SGD training for families must be approachable and accessible. Participants emphasized the need for content that is clear, free of jargon, non-intimidating, non-judgemental and not patronising. Like Binger, Kent-Walsh, Berens, Del Campo, and Rivera (2008), our participants highlighted the need for culturally sensitive and linguistically appropriate AAC training resources. Several participants raised the need for resources accessible to parents with low literacy skills, language or learning difficulties, or sensory impairments. Finally, learning aids such as video examples, self-test quizzes, homework activities and prompt sheets were viewed as a useful complement to didactic learning material. Specialist training can offer parents enhanced status and respect within the child’s AAC team. Other studies have also noted the importance of parent training in the empowerment of families (Ferm et al., 2011). The present results suggest that formal recognition of parents’ training, through written certification or formal qualification, may particularly

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benefit families struggling for recognition as a knowledgeable team member.

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Peer support for families with a new SGD Like other studies (Ferm et al., 2011; Marshall & Goldbart, 2008), we found that experienced peers can help support families with a new SGD by providing technical advice, helpful strategies and information about services and resources, as well as moral support and advocacy. Parents accessed peer support through formal and informal venues and highlighted the need for forums that were well co-ordinated, well advertised and easily accessible to facilitate attendance by resource- and time-poor families (Carter et al., 2007). For parents in our study, in-person groups had been mostly well supported by their primary therapy service. In contrast, some parents had discovered online groups without therapist assistance, while others said they wouldn’t know where to start looking. Given the popularity of online parent-to-parent support (Parette et al., 2010), wider advertisement may assist more parents to engage in web-based peer networks. Due to the small population of children using SGDs in Australia, most peer networks described by our participants involved a diverse mix of families, covering a range of children’s ages, diagnoses and abilities. Parents in our study aired none of the previously noted concerns about heterogeneous peer support groups (e.g., Davies & Hall, 2005), instead highlighting the benefits of meeting families who used other types of SGDs. For parents primarily seeking advice, heterogeneous groups may become frustrating if discussions focus around irrelevant issues. Further research is required to determine the optimum balance of peer-support formats needed to accommodate the diversity of families using SGD technology. Telepractice and remote support Telepractice was valued by SLPs as a way to monitor clients once regular services ceased or for provision of regular services to families in rural or remote locations. As with other studies (e.g., Antonini et al., 2012; Hill & Miller, 2012) parents and SLPs identified several advantages to telepractice including easier travel and therapists being able to observe the home environment. Despite this, participants typically attributed greater value to in-person services over telepractice and remote models were not always considered an appropriate replacement for in-person services. Parents and SLPs worried that rapport development and complex explanation may be compromised by telepractice. Little research has explored the impact of telepractice on the quality of SGD service delivery or the relationship between clients and therapists. Given the complexity of SGD training, this area warrants future research.

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In contrast to Hill and Miller’s (2012) generalist SLP survey results, none of our clinicians reported using video-conferencing for telepractice. Some SLPs and parents commented that families in rural areas may not have adequate Internet capacity for video-conferencing or large data transfers, which could account for our findings. Australian SLPs may also under-estimate rural residents’ receptiveness to telepractice and their access to the necessary technology (Dunkley et al., 2010). Given the increase in access to IT throughout Australia, regular reviews of clients’ access to requisite technology may improve the take-up of telepractice, particularly video-based support, for under-serviced families with a new SGD. An issue raised by several SLPs was the lack of current service policy around telepractice and the increased workload for therapists arising from informal telepractice (such as long-term telemonitoring). This is of concern, given the already-high workloads of professionals in this field (Bush et al., 2008; Iacono & Cameron, 2009). Based on the recommendations from SLPs in our study, services may need to define policies around: (1) the scope and aim of telepractice, (2) criteria for clients to qualify for tele-AAC service and (3) the “weighting” and distribution of telepractice clients across therapist caseloads (including formal recognition of the time required for each tele-service). Finally, practice guidelines around ethics, technology and quality assurance for tele-AAC should be incorporated into future position statements from the leading AAC organizations (Anderson et al., 2012).

Limitations Despite the small number of participants, data saturation was achieved within this cohort; however, as in any qualitative study the experiences of our participants cannot represent the full scope of family/ clinician experiences. People using SGD technology are a heterogeneous population and due to recruitment restrictions several key groups were underrepresented in this cohort, for example, families of children with ASD or primary intellectual disability. Parents and clinicians from rural and remote areas were also under-represented. Finally, while the recruitment sources facilitated the inclusion of a range of families, it probably did not reach families who are disengaged from support services. Consequently, it is not possible to generalize the results of this small qualitative study to the broader community of children using AAC, their families or their therapists. Although several strategies were used to improve research rigour, additional techniques including the use of second interviews, external coders, and triangulation from other data sources (e.g., service provider policy documents or existing training resources;

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interviews with service managers and other stakeholders) may have further strengthened the findings (Tong, Sainsbury, & Craig, 2007) and should be considered for future research in this area.

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Conclusion Given the importance placed on traditional, in-person services for families with a new SGD, alternative models may not offer a full solution to the paucity of services or SLP capacity seen currently in the AAC field. Nevertheless, SLPs and parents in our study were enthusiastic about alternative service models, including parent-implemented therapy, parent training, peer support and telepractice, to enhance service access, clinical outcomes and quality-of-life for families who use SGD technology. Additionally, alternative service models may meet specific needs where in-person services fall short, for instance the insider-support and advocacy found within peer-networks and the ability for telepractice to open a window to the realities of SGD implementation for families beyond the clinic. To ensure optimum uptake of these auxiliary services and to facilitate best possible outcomes for children using SGD technology, SLPs and parents need to be well supported with appropriate resources and training. As these practices evolve, AAC service providers may also need to formalize policies around the quantity and duration of services provided and to whom these services will be available. This study provides a starting point for research in this area. Engaging other stakeholders, including educators, service managers, device manufacturers and young people using SGD technology, in future research will elucidate further implications and practicalities of alternative service delivery with this population. Finally, ongoing clinical and empirical evaluation of these approaches as they are piloted in a range of practice settings is imperative.

Acknowledgements The authors wish to thank the parents and SLPs who generously shared their experiences and insights and the service providers who assisted in co-ordinating this project. The first author also thanks the National Health and Medical Research Council (NHMRC) and Speech Pathology Australia, whose financial scholarships made this project possible. Declaration of Interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper. References Abbass, A., Arthey, S., Elliott, J., Fedak, T., Nowoweiski, D., Markovski, J., et al. (2011). Web-conference supervision for

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Appendix: Interview question guide

For parents and SLPs:

For SLPs: • •

How do families feel about getting a communication device? What sort of support do families receive at the moment?

For parents: • •

How did you feel about your child getting a communication device? What sorts of support did you receive?

• • • •

What do you think is the best way to prepare a family for getting a communication device? What help do they need at the start? Does this change later? What do you think about an Internet-based training and support program for families with a new device? • What should a program like this deliver? • How long should it be? • What would help or encourage people to complete the program?