http://informahealthcare.com/pdr ISSN: 1751-8423 (print), 1751-8431 (electronic) Dev Neurorehabil, 2014; 17(2): 75–83 ! 2014 Informa UK Ltd. DOI: 10.3109/17518423.2013.857735

ORIGINAL ARTICLE

Australian parents’ experiences of speech generating device (SGD) service delivery Kate Anderson1, Susan Balandin2, & Roger Stancliffe3 1

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

Abstract

Keywords

Objective: To explore parents’ perceptions of existing support for families with a new speech generating device (SGD). Method: Six Australian parents of school-aged children who used an SGD participated in semistructured interviews about their experiences of SGD support. Data were explored and compared using narrative analysis. Results: Participants discussed barriers to service access, including long waiting lists, service exclusion policies and limited therapist expertise in SGD practice. They emphasized the value of ongoing service coordination for families. Finally, participants discussed the nature of role boundaries and responsibilities for parents vs. therapists in the intervention process and the impact that intervention approaches had on parent autonomy, empowerment and confidence. Conclusion: Having an SGD at home generates ongoing support needs, which had not been well met for some parents in our study. Results suggest that timely, well coordinated and family-centred support may enhance service experience for families with a new device.

Augmentative and alternative communication, speech generating device, parents, service delivery, family-centred practice

Despite the numerous benefits of speech generating devices (SGDs) for people with complex communication needs (CCN) and their support network [1–4], learning to use and support this complex technology poses a challenge for many families. Managing an SGD often requires families to master technical skills including vocabulary programming, calibration, recharging, data backups and system upgrades [2, 4, 5]. In addition, families face the demands of helping their child learn to communicate using the system and organizing repairs when necessary [2, 4, 5]. These responsibilities can become a heavy burden over time for both the family and the person learning to use the SGD [6, 7]. Nonetheless, high-tech SGDs have been shown to enhance communication rates [4], integrate with telecommunication, computer and internet technologies [8] and provide a wider range of access options compared with light-tech or paper-based systems [8] for people with CCN. Even with these benefits, on an average, 29% of SGDs are abandoned [9]. This may be due, in part, to high maintenance demands combined with the initially steep learning curve required to use the SGD [2, 4]. For 64% of abandoned devices, a lack of training was also a primary factor [9]. Inadequate support and training around a new device can Correspondence: Kate Anderson, University of Sydney, Discipline of Speech Pathology, Faculty of Health Sciences, 75 East St, PO Box 170, Lidcombe, 1825 Australia, Tel: +61 2 9351 9413. Fax: +61 2 9351 9163. E-mail: [email protected]

Received 22 September 2013 Revised 14 October 2013 Accepted 17 October 2013 Published online 4 December 2013

increase family stress and place additional time demands on parents [2]. Conversely, speech-language pathologists (SLPs) in the US identified that ongoing support for the person learning to use the device and their augmentative and alternative communication (AAC) team (including family members, therapists and educators) had been a positive factor in 85% of cases of long-term success with communication technology [9]. Despite these indications of the need for initial and ongoing support, many families with a new SGD remain under-serviced [6, 7, 10]. Support for families with a new SGD

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Introduction

History

Frequently, parents have sole responsibility for maintaining the device, programming vocabulary, troubleshooting when problems occur and providing language instruction [2, 6, 7, 10], even though many report having felt underprepared for these tasks [7, 10]. To compensate, some parents attempt to teach themselves these foundation skills using device manuals, online information sources and help forums [7, 10]. Parents have stressed the importance of professional guidance early on in the SGD learning process. As one parent of a child with CCN in Goldbart and Marshall’s interview study explained: ‘We’re not speech and language therapists . . . we’ve never done this before, we depend on people like them’ [10, p. 204]. Support needs and service experiences vary both within and between families [2], and may be influenced by gender [11] as well as cultural/linguistic background [12, 13]. Identifying the strengths and support needs of individual

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family members sits at the heart of family-centred practice in AAC [14]. The parent–professional relationship Traditionally, early intervention occurred within an ‘expert model’, with family members rarely being consulted about their opinions or involved in decision making [15]. Today, best-practice standards in AAC tend more towards a familycentred approach [14], for example, the Swedish ComAlong training programme for parents learning to use AAC strategies with their children. Increasingly, family members are expected to serve as primary interventionists for their children using AAC (see [16] for review), and many are keen to be involved. In a British survey of 114 parents of children with physical and/or intellectual disability, respondents indicated a desire to play an active role in their child’s intervention and expected their own knowledge to be valued [15]. Some (but not all) parents of children using AAC in the US [2] and UK [10] have expressed similar expectations, both in the choice of their child’s device, and in its implementation. Nonetheless, while outcomes from family-centred intervention studies [17, 18] illustrate the benefits of positioning parents as experts and primary interventionists for their child, vestiges of the expert model still endure both in early intervention and AAC practice. Granlund et al. [16] noted a paucity of research examining the role of family members in intervention. Of the 40 AAC intervention studies reviewed by Snell et al. [19], only 20% of interventions took place in the child’s home environment, and only 15% of the total involved parents as agents or assistants. Likewise, in Nunes’ review of 56 intervention studies on the use of AAC by individuals with autism, only nine studies involved parents as interventionists, and only four of these placed parents as the primary interventionists [20]. Given the importance of including families in device implementation, it is essential that parents are valued as experts and can access the necessary level of support to feel comfortable and confident when serving as a primary AAC interventionist for their child [14]. Despite this, Australian speech pathologists have reported a range of barriers compromising their ability to provide such services [21, 22]. SGD services in Australia Service access. Like other countries including the UK [23] and the US [24], Australia is experiencing a shortfall in provision of speech pathology services across both metropolitan and remote/rural areas [25, 26]. In some areas, Australian parents travel long distances to access therapy centres [25, 27], while others face extensive waiting lists. Ruggero et al. [25] surveyed 154 parents of Australian children who were waiting for or had received speech pathology services, about their experiences in the system. Of these parents, 89% reported that the availability of local SLP services was insufficient in their local area, and 60% of the families who had exited speech pathology services considered that their child’s intervention had ended prematurely [25]. Issues of service quantity and quality are exacerbated in geographically isolated areas, where local services may be available on a

Dev Neurorehabil, 2014; 17(2): 75–83

monthly or less frequent basis [27]. Such areas also see a greater reliance on the use of indirect home and/or school programmes, which are often poorly monitored by the prescribing therapist [27]. Although these studies focused on generalist SLP practice, concerns about reduced service availability and unwieldy caseloads have also been reported within the Australian disability [21] and AAC [22] fields. Service capacity. Iacono & Cameron [22] interviewed 14 SLPs about AAC services in Australian metropolitan and rural areas. Time constraints were identified as a barrier to best practice, particularly given that service plans were often strictly capped. Participants noted the size and complexity of their caseloads were often unmanageable [22]. In addition, knowledge and understanding of AAC practices varied across SLPs [22], an observation that supports the findings of an earlier survey of 971 Australian SLPs [28]. Service limitations such as these have been noted across the disability sector [21] and are likely to compromise support for families with a SGD. Australia is an expansive country, roughly the same landmass as the US and yet sparsely populated for its size. Australian disability providers must service large catchment areas, despite the shortfall in therapist numbers and capacity. This is often achieved through the use of indirect, consultative or ‘hub-and-spokes’ service models, which although efficient are not always as appropriate or desirable for families as traditional in-person support [21, 29]. Little is known about the experiences of families learning to use a new SGD within these service constraints or of their opinions towards alternative service models. Consequently, the aim of this study was to explore the perspectives and experiences of parents of children with an SGD from around Australia. In particular, this study examined current service access and service-co-ordination as experienced by parents, as well as exploring their perspectives of the parent– professional relationship, with a view to developing a new SGD support and training resource for families following the projects’ completion.

Method This study was approved by the Human Research Ethics Committee at the University of Sydney. Pseudonyms have been used and some demographic information has been withheld to ensure confidentiality given the limited size of this clinical population in Australia. Recruitment Therapists working for disability service providers across Australia assisted with recruiting parent participants. Direct recruitment occurred using the AGOSCI listserv (http:// www.agosci.org.au/list.htm), which connects people with CCN, their carers, family members and professionals. Eligibility criteria included being a parent of a person aged 2–18 years of age, who currently used or had used an SGD as a primary means of communication. Eligible parents were provided with an information statement and invited to contact the research team if interested in participating. Six parents were recruited to the study (see Table I).

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Table I. Demographic details of participants and their children. Parent (child)*

Location

Age of child

Child’s diagnosis

Time with current SGD

Alex (Felicity)

Metropolitan

Primary school

Cerebral palsy

Currently on trial

Kerry (Mia) Lee (Riley)

Metropolitan Metropolitan

Primary school Primary school

Cerebral palsy Autism

Six months Two years

Jo (Ricky)

Metropolitan

Primary school

Twelve months

Nat (Josh) Charlie (Selena)

Regional Regional

High school High school

Autism, dyspraxia, intellectual disability Cerebral palsy Cerebral palsy

5 6 months Six months

Child’s previous communication Some manual signs – mostly uses speech Manual signs Picture Exchange Communication System (PECS) Light-tech devices, manual signs, & PECS SGD Manual signing, SGD

*Pseudonym.

Data collection All parents participated in an individual semi-structured interview with the first author, a speech pathologist experienced in SGD support. The interviews lasted between 40 and 120 minutes. Interviews were conducted face-to-face (n ¼ 2), by phone (n ¼ 3) or as an online videoconference (n ¼ 1). Interviews followed a semi-structured interview guide and included questions such as: ‘can you tell me about the process of getting your son/daughter’s communication device?’ and ‘as a parent, what did you see as being your role in implementing the device?’ Probes and follow-up questions were used to seek clarification and further detail where necessary [30]. The interviewer transcribed the data verbatim from the digital audio-recordings. Additional non-verbal information such as sighs, extended pauses and laughter were included in the transcripts [30]. All data sets were de-identified and analysed using narrative analysis [31]. Data analysis The participants described their experiences as narratives, which included personal anecdotes and general statements or opinions about a topic. The first author started analysis by highlighting initial themes within the data (e.g. frustration, access, training) on first reading. Narrative segments that had been separated in the telling (by topic divergence or interviewer probes) were reunited by the first author to form complete narratives [31] following a loose time-frame, e.g. ‘getting a diagnosis’, ‘getting the new SGD’, ‘working with schools’ and so on. Finally, summarising statements (story themes) were formulated by the first author to capture the overall messages conveyed by each data set [31, 32]. The story themes were placed under the stages of the timeline and were illustrated with discrete excerpts from the data. This process is illustrated for the following narrative segment from parent Lee: So for a long time there I was just beside myself. Because whilst he was embracing the PECS side of it, you know once I left here I had no one to call. No private speech therapist knew how to use this device. This narrative segment was placed under the timeline heading: ‘working with therapists’. Initial themes highlighted in this segment (underlined) included distress, isolation and

lack of therapist knowledge. In combination with other quotes, it also contributed to the following summarising statement (story theme): ‘They couldn’t provide the support I needed, as the speech therapists weren’t trained in Riley’s communication systems. I was often alone in supporting his communication’. Member-checking and co-coding procedures improve the rigour of the analysis of qualitative data and minimize potential bias in interpretation [32]. Participants were sent a copy of their own data and the resulting summary of the first author’s initial interpretation. Participants were invited to amend any details and to check that the author’s summarising statements reflected their intended message. No amendments were received. Following this, the story themes were compared across data sets [31, 32], and overarching themes that occurred across individuals were collapsed to reflect common experiences. The second author reviewed this coding and together, the first and second authors discussed the few discrepancies until a consensus was reached.

Results Across the data sets, five primary story themes were identified: (a) access to services, (b) therapist knowledge and expertise, (c) service continuity and consistency, (d) roles and responsibilities and (e) parent power. Each of these contained several subthemes, which will be expanded below, and then addressed in turn in the discussion section. Access to services Parents described their experiences of service, both from professionals as well as from supplemental sources of device support. Service timing, frequency, and duration of professional support. Five of the six parents described at least some positive experiences with services. Three of the families had received consistent, weekly in-person support from a speech pathologist while they familiarized themselves with the new technology. Nonetheless, all six participants expressed concern over aspects of the services they had experienced, starting from the time the SGD arrived. Nat remembered feeling abandoned by the therapy team from the beginning: ‘When we got the Dynavox, it was sort of just given to us and said: ‘‘here you go, go and learn how to use this’’’. In a similar situation Jo, a single parent, ‘would stay up all night

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once a week. I had no sleep once a week. Programming the thing’. Jo further reflected:

with their access to the intervention they required. As Lee recalled:

It took a lot of effort and concentration and determination. And particularly when you know that there’s not a lot of support, it’s really up to me . . . and just to take it on board and take on all that hard work is sort of daunting.

I felt initially when I got this device that ‘you’re not listening to me. I don’t want this device, I want PECS training’. But the main problem [was] that nobody here was PECS trained, and nobody here was going to be PECS trained.

Three parents described instances where they had abandoned the device in the absence of steady professional guidance and encouragement. As Lee said: ‘So for a long long time there that device just sat in our cupboard, and did nothing . . . ’. Parents noted that coordinating and attending appointments and making phone contact with therapists could be challenging. Intermittent ‘downtime’ in service access, often due to policy barriers such as age- or eligibilityrestrictions, was also a concern for most families. For example, once Lee’s son Riley reached school age: ‘I didn’t have access to [the Autism support service] any more, and I’ve been on a waiting list for the other main service provider here . . . for about a year and a half’. Support may be even less accessible for families living in regional or rural areas. Nat, a parent who had previously lived in a rural area, remembered travelling long distances to see the specialist clinical team ‘every six months I think’. Parents shared their frustration regarding the lack of funding available for long-term support services, despite the substantial set-up costs incurred. Lee said: ‘I was beside myself, I was so angry that I’d been given this elevenand-a-half thousand dollar machine, and nobody in [the state] could give me any kind of support’. Supplementary support. As a supplementary measure, parents reported seeking assistance from online forums, websites, device manuals, device distribution companies and other parents. This worked well for some families but was challenging for others who preferred face-to-face support. As Lee explained: ‘my only other access to support was a company in Adelaide. There’s a time difference, I don’t want to be ringing up another state to help, to get someone to help me’. Given their experience of frequent device breakdowns, parents stressed the importance of having fast and easy access to technical help. As Alex commented: ‘if it’s something that the child is using all the time . . . you’d want a response straight away’.

Frustration was also reported when therapists had taken on a device or system they had little knowledge about. Lack of supervision for novice therapists. Parents recognized the difficulty faced by novice clinicians who had limited training and supervision in SGD use. For example, rural parent Charlie remembered that her daughter’s new graduate therapists ‘weren’t in the same area [as their supervisors], so there wasn’t a lot of hands-on mentoring’. Parents advocated for better training and preparation of novice therapists before they work with complex SGDs as well as ongoing supervision from experienced SLPs when possible.

Therapist knowledge and expertise Parents identified variability in therapists’ knowledge and experience, and a lack of supervision for novice therapists, as barriers to receiving quality support. Variability in therapist knowledge. Parents described the expertise and prior experience of assigned therapists as ‘pot-luck’. Nat reflected: ‘I think our other therapist, she didn’t know much about them around then . . . but our speech pathologist now, she knows a lot about the devices, so I guess that makes it easier’. Having a therapist who knew little about the child’s SGD system was difficult for parents, particularly when this interfered

Service continuity and consistency Service continuity was determined by the degree to which team members within and across organisations communicated with each other, as well as any policy barriers that prevented interagency coordination from occurring. Interagency coordination. Four parents in the study complained about the lack of communication between their service providers, even though inter-service coordination had been promised initially. Two parents also complained of receiving ‘mixed messages’ about their child’s development or potential, for example, Jo: ‘there’s this constant tension between people [at the school] saying he doesn’t understand, and then [therapists] continually rising up your expectations . . . so it’s a bit difficult to be pulled apart like that’. Multiagency access. At times, co-ordinated services had been actively discouraged. Single-service exclusion policies (where a child could only access one service at a time) had been particularly difficult for Lee, whose son Riley had a dual diagnosis of cerebral palsy and autism. As a result of such policies, Riley could either receive device-specific services from a cerebral-palsy organisation or Picture Exchange Communication System (PECS)-focused therapy from an Autism service provider, but could not access both organisations simultaneously. The choice between services was difficult: ‘ . . . Because whilst he was embracing the PECS side of it, you know once I left here [CP service] I had no-one to call [about the device]’. This resulted in many years of ‘service hopping’ for Lee’s family as their support needs changed over time. Intra-agency coordination: Even within the same service, lack of continuity was a common frustration. When children changed SLP (due to staffing turnover or the start of a new service plan) and the new SLP was unfamiliar with the device, parents felt like they were going backwards. As Lee remembered: ‘ . . . We were just going through old ground again, I was like ‘‘oh my godfather, I can’t do this again’’’. Families also expressed concerns regarding overlap of services within a team. For example, when Charlie’s daughter,

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Selena, was diagnosed with cerebral palsy at 3 months, Charlie was swamped by the recommendations for home practice coming from Selena’s occupational therapist, physiotherapist, SLP, and others – at times adding to more than 27 hours of homework per day: ‘ . . . and that didn’t take into account that she needed to be fed, she needed to sleep, she needed to have a bath, and she just needed to be a kid!’. As Charlie suggested: ‘I think if they started doing more of a multidisciplinary model . . . then everyone would be aware of what the other therapists were putting on the family . . . ’. ‘Therapy’ had at times been an invasive and overwhelming experience for parents that started early on in their child’s life. In addition to other demands (paid work, siblings, and housework), the intensity of their child’s therapy needs placed strain on many households. Even with these challenges, all of the parents in the study wanted and expected to play an active role in their child’s communication management. As Charlie explained: I think that as a parent, it’s your job to get your child ready for the adult world. And if that means that you need to be in there every second of the day hands-on, getting it working, that’s what you need to do.

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whole thing, based on either whatever courses that I’d been on during the year and things I’d learned about communication, or things she’d said that she needed . . . (Charlie). Nonetheless, all parents agreed that the responsibility of teaching the child and establishing the device should initially fall to the SLP, with parents gradually implementing home teaching as they became more familiar with the system. Role transition. The transfer of intervention roles between parent and SLP requires a balance. Parents emphasised the value of guided practice in this process. As Jo pointed out, ‘therapists tend to show you, show you, show you. ‘‘Your kid is doing this, with me’’. But they’re not so good at saying ‘‘now you do it’’, in a way that works out’. At the same time, Jo cautioned that: ‘The parent has to be willing to submit themselves to being a student . . . it’s a relationship that needs to be negotiated and can be really very difficult I think’. Participants noted that sensitive communication and collaborative practice approaches can help to establish positive working relationships between families and services. Parent power

Roles and responsibilities Parents in the study discussed role boundaries that defined the work they and their child’s SLP did in the intervention process and how these roles changed over time. Role boundaries. Participants consistently defined their primary role in the SGD process as facilitator: to encourage their child and maximize opportunities to use the device in both home and community environments. Alex, Charlie, Kerry and Jo also spoke of their role in extending and encouraging language growth. She [daughter] will always push: ‘I love Lewis’ . . . and so on. And that’s good, because she’s doing what she wants to do. But occasionally I have to say ‘ok, off that page – why don’t you write me a sentence about your bedroom’ or something. And you’ve got to encourage her to go ahead. (Alex) Opinions on programming, maintenance and initial teaching differed widely. Parents who were well supported, like Alex, preferred to leave this to the child’s SLP. . . .it is a device that I know nothing about . . . And so I think it’s good that the therapists do spend time with the child . . . and we can reinforce that learning then afterwards (Alex). In contrast, parents who had reported an absent, lowresourced or inconsistent intervention team expected the family’s roles to be more involved and placed a greater onus of responsibility on the family to meet SGD goals: I had nothing – I did everything . . . Every Christmas holidays . . . I would sit down and pretty much re-jig the

Parents described the impact of disempowering practices within SGD services, including the exclusion of parents from decision making, and the long-term impact of cliniciandominant intervention approaches. Family-centred goal setting. Kerry and Alex had both struck a good balance with their therapy team and felt that their goals and priorities for intervention were well met. In contrast, the other four families reflected that goal setting had at times been far from family-centred. These parents often found themselves pitted against an education or therapy team and talked about having to ‘fight’ to get the services they wanted, as in Lee’s case: ‘I felt like: ‘‘you’re not listening to me!’’. You know, I know you’re trying to help me and I appreciate what you’re trying to do for me but I don’t want that, I want this’. Device preference was a common point of conflict between therapists and parents, as in Nat’s case where the parents’ choice of an eye-gaze device was initially vetoed by Josh’s therapist: Our speech therapist got us on to that one [device controlled by head movement] . . . But we still had in our head that this pupil one, the one using his pupils might be better for him. . . . We got it [head-controlled device] home and it was just too hard to control his head, and the movement. Authoritarian intervention. Parents Jo and Charlie also spoke openly about the ‘disempowerment’ they and other families that they knew had experienced, particularly when health professionals intervened with a young child and overwhelmed families with advice and instruction. As Charlie explained: ‘I think you can . . . doubt your ability as a parent. . . . it’s very easy to just go: ‘‘ok, I don’t know it’’, and lose that parenting instinct of what you’re doing’. Similarly, Jo described this approach as being: ‘so damaging,

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it just disempowers and shatters the parents’ confidence in themselves’. Jo went on to explain: . . .that’s another reason why, even from the very beginning, from an early education programme when the kid’s only three, you’ll lose a lot of parents . . . because they’ve . . . been given this attitude of ‘‘don’t worry, we’ll do it for you’’. Indeed, several parents in the study were still dependent on their child’s SLP to maintain and manage the device, as in Nat’s case: ‘if I have a problem with it I’ll just leave it up to Krista [SLP] and think she’ll be able to fix it, sort it out. But we’d like to be able to do it ourself’. Participants noted that gaining independence in these skills would be important for the future. They suggested that to feel empowered, parents needed to be included throughout the intervention process as a valued member of the child’s SGD team. Jo advocated: I’m all for parents being empowered and given responsibility and encouraged to make their own decisions. And yeah, they’re not going to get it all right. And the professionals are often going to think: ‘‘oh, what is this stupid parent doing, they’re getting it all wrong?’’ . . . don’t give up, and don’t condescend or demean them (Jo). Taking the SLPs’ perspectives, parents reflected that family members can be challenging to work with, especially those with long-standing grief or anger issues. Charlie recognized that it is easy for services to discount these families as ‘non-compliant’: . . .you also get the ones who don’t engage with particular services, and as an outside observer you can go ‘‘yeah, that’s because you don’t treat the child with respect, or you don’t treat the family’s choices with respect’’ . . . But they’re then labelled as being non-compliant . . . (Charlie) Nonetheless, participants urged therapists to persevere with families and ‘ . . . find a way to bring them on board’. As Jo summed up: ‘it might take longer but it’s important’. Speaking out. Despite their frustrations, parents are not always willing to formally voice their opinions about the services they receive – even when provided with opportunities to be heard. For example, Charlie had witnessed such reluctance during a local parent support group meeting, held in the room next to a rural service forum: I’m sitting there with this [parent] group, and they’re bitching about [the organisation], and how nobody does anything . . . There were seven other people in the room and not one of them got up and walked the 15 metres to tell the people that mattered. Even when families did speak out, they sometimes felt their concerns went unheard, as seen in Lee’s experience: ‘ . . . So I wrote a complaint letter here and jumped up and down, and of course nothing happened. So yeah I wasn’t overly keen to embrace it [the device]’. As Lee’s situation

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illustrates, when conflict and frustrations are poorly addressed, family members may disengage from intervention. Ways in which the working relationship between families with a new SGD and their SLPs may be strengthened, despite current service constraints, will be discussed below.

Discussion Parents in our study mirrored concerns raised by others [2, 6, 7, 10]. Specifically, they indicated that (1) families with a new SGD require a high degree of initial support to establish its use in the home environment, (2) needs such as device programming, vocabulary selection and goal-setting are typically ongoing and (3) families may feel stressed and overwhelmed when intervention and support services are inaccessible, of poor quality or disempower families. While it is not possible to generalize the results of this small interview study to the wider AAC community, the experiences shared in this study by these Australian parents provide insight into current SGD support and its impact on the family system. Specific recommendations for addressing the concerns raised in each of the five primary themes are discussed in this study with reference to the existing literature base. Access to services Families in our study ideally wanted intervention to be at a minimum weekly, one-on-one, home-based and ongoing. This degree of support is currently difficult to achieve in Australia given logistical, resource and policy barriers to service provision [21, 22, 25–27]. Our study, in common with others, identified that lack of support for families is a substantial factor in device abandonment [9]. When the desired level of support is not possible, alternative and supplementary service delivery models, including telehealth, group-based interventions, training for parents and family-to-family networking, may partially bridge this gap and are viewed positively by both parents and therapists [33]. Generic, self-directed support (e.g. online forums and manufacturer websites) were helpful to some, but not all, parents in this study and did not provide the degree of assistance or individualized support many families required. Research into the efficacy and viability of alternative service approaches within SGD intervention has been limited to date and warrants further investigation [34]. Therapist knowledge and expertise Working with an SLP experienced in SGDs had been an inspiring and encouraging experience for parents in this study. In contrast, SLPs who lacked experience were a source of frustration. Australian SLPs may have limited preprofessional training around SGD intervention, and much of their knowledge about SGDs is gained on-the-job [22, 28]. Research in other countries [5], including the US [7] and the UK [10, 35] has also exposed variability in SLP expertise. For instance, only 16% of the 233 AAC professionals (mostly SLPs) surveyed by the UK organisation Scope reported having ‘specialist’ knowledge in AAC, and 69% reported an absence of AAC training as part of their professional qualifications [35].

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When working with SLPs who were under-skilled with a child’s device, parents in this study reported being forced to ‘go it alone’. Closer supervision and better support for novice SLPs, particularly in rural areas where they often work in isolation, might address this concern. Advice from specialist technology consultants [35] and access to basic, device-specific training may help local SLPs to quickly up-skill when they encounter unfamiliar SGDs. In addition, maintaining up-to-date working knowledge of evidence-based practice (EBP) in this area could be facilitated by easier access to research material (e.g. electronic journals) and clinical working-groups [22]. To this end, support and ‘buy-in’ from senior management are essential to ensure that SGD administration, training and EBP research duties are accommodated within existing workloads [35]. Service continuity and consistency Parents in this study noted a lack of consistency in services for families with a new SGD and called for improved communication and co-ordination of services within and across organisations, settings and stakeholders. Backtracking, service overlap and miscommunication between therapists or services are known to create strain for families [21, 36] and can be minimized with clear communication and structured service planning. One parent in our study recommended that team goals be triaged according to family capacity and suggested having one primary therapist delivering the bulk of a child’s home programme. Indeed, such transdisciplinary practices may prevent overlaps in therapy programmes, reduce the size of the direct therapy team and minimize stress for families [21, 37 (pp. 123–124)], although further research is required to establish the benefits and viability of this approach in the field of AAC. Policies that preclude families from accessing multiple agencies simultaneously may be detrimental to some clients. For example, families of children with multiple diagnoses (e.g. cerebral palsy and autism) or those using multiple communication modes (e.g. sign language and a SGD) may struggle to find a full complement of expert advice from a single organisation. Shared care, joint assessments and expert consultation between services may help and are known to be highly valued by some families receiving multi-agency support [36]. When accessing services from multiple agencies, the use of a care coordinator or case manager can also help [36]. This individual can be a paid professional or a trusted personal contact who acts as a note-taker, informant and even advocate for the family, while facilitating cohesion between services [36]. Roles and responsibilities Most participants in our study saw a role for parents in facilitating device use in the child’s home environment and in encouraging further development of the child’s communication skills. However, most participants agreed that initial teaching, vocabulary programming and device maintenance should be the primary responsibility of the clinician. Participants’ reasons for this mirrored those given in other studies, including the lack of parents’ own expertise in speech

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pathology, and lack of time when they had other family members to consider [2, 5, 10]. Although parents’ expectations and capacity to take on an active role vary from family to family [2], several parents in our study found themselves solely responsible for managing the SGD and related intervention. They report that this had a significant impact on family life and the ultimate outcomes of the SGD intervention. One possibility to address this concern is to clarify team member roles using collaborative goalsetting tools (e.g. Team Around the Child [38]), so that the child, therapist, caregivers and education team work collectively to ensure that the SGD is adequately supported. This may require anticipating ongoing needs, for example, scheduling regular sessions to update vocabulary, review curriculum goals or plan for transitions. Parents in our study supported Cress’s recommendations [14] that incremental changes and the use of graded supervision (progressively withdrawn at a family’s desired pace) can support parents in adjusting to new roles, responsibilities and environmental modifications without being overwhelmed. Sustained and follow-up support options are advisable, as the needs of the child and their family evolve over time. Formal tools such as the Family Impact of Assistive Technology Scale for AAC systems [39] may allow the AAC team to promptly identify and address sources of stress and family concerns, as well as celebrate positive changes. In addition, parents in our study expressed the importance of services being transparent regarding the timeframe and quantity of support they can offer, to ensure that the expectations of all team-members are realistic from the start. Parent power The families in this study observed power differences arising from professional status and expertise. Participants in the study expected clear, honest and consistent messages from all team members and were frustrated when this did not occur. This is consistent with Case’s findings [15] that parents want professionals to provide realistic prognostic messages, albeit in a sensitive and hopeful manner. Despite this, health professionals continue to withhold information from parents for a range of reasons, heightening the knowledge gap between clinicians and parents and leading to disempowerment and dissatisfaction for families [15, 18, 21]. Training for families around SGD programming and language teaching can be empowering [2, 7] but needs to be appropriately accessible. Unfortunately, families in Australia experience barriers to accessing SGD training, particularly when it is expensive, poorly advertised, professionally-dominated or offered at inconvenient times or locations [40]. Parents in our study warned of the consequences arising from over-zealous demonstrations of clinical skill, a common approach described by Jo as: ‘look what your child is doing with me’. This phenomenon of parents being placed in passive observer roles, rather than being active participants, is also seen in early intervention [41]. As Cress [14] noted, time spent working with the child develops the professional’s skills in communicating with that child but does not necessarily benefit the parents. In fact, Cress cautioned that parents may

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start to view strategies as unfeasible if they only observe them modelled by skilled clinicians, during moments of ‘best’, rather than everyday, communication. In introducing AAC (including SGD strategies) to families, it is equally important to support both the family’s and the child’s skills [14], given that these dyads will generate far more learning opportunities and social value than clinician–child interactions. Parents in our study, like those in previous studies [2, 15], wanted their own goals and their extensive knowledge about the child to be valued and taken into account. This had not always been the experience of parents in this study, and a prominent theme was families having to ‘fight’ for the desired services. Omission of families from AAC planning and intervention has been reported in other studies [2, 7, 16, 42]. For instance, less than half (48%) of the parents who completed Hetzroni’s survey on AAC services in Israel [42] reported being involved in the implementation of their child’s AAC system. External support is most efficient and best received if it is sensitive to the family’s priorities and validates their strengths and expertise [2, 14]. As Cress highlighted: ‘To be successful with AAC, children and families need to have AAC strategies that they have chosen and to which they can be committed’ [14, p. 53]. Limitations of this study and future directions Recruitment for this study was smaller than anticipated. As such, the results of this study only represent the views and experiences of a small group of parents. It is possible that the study attracted families who were less satisfied with services and as a result were highly motivated to participate. Certainly, despite the interviewer attempting to give equal weight to positive and negative probes, participants focused primarily on service limitations and were strong in voicing their concerns. On the flip side, under-supported families in crisis may have lacked the capacity to join the study or may have missed recruitment through the participating organisations. In either case, the results may not reflect average experiences of SGD services in Australia and should be interpreted with caution. Despite this, results from parent studies offer valuable direction for AAC clinicians and policy makers alike. Future research may consider alternative approaches such as ethnography, focus group methods or action research to gain additional insight into parents’ experiences and empower families to direct change. Indeed, parent and professional participants of Carter’s participatory research study on multiagency service delivery felt that their experience and insight was valued by this process [36], suggesting that parents’ frustrations may be partly assuaged by seeing their concerns publicised, and translated into practice changes.

Conclusion Case [43] heralded a slow but steady transformation from medical-model practice to more collaborative and empowering approaches to support children with a disability and their families. In some services, positive changes have already been observed, including the recognition of parents as experts and ‘consumers’ of service, the valued role of families in the intervention process and the contributions of families to

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current research and the public disability forum [36, 43]. Continued growth in these areas at both grass-roots and organisational levels is anticipated if individual professionals and service providers are able to continue to place value on the autonomy, capacity and expertise of family members. Ensuring that families are well informed and involved at all levels of decision-making will be one means to this end. Nonetheless, there still remains significant policy, practice, knowledge and resource barriers to best practice for families of children with a disability, and in particular to this study, those families learning to support the use of SGD technology. The growing evidence from this and other studies is that families with a new SGD require sustained input, at a level commensurate with their identified capacity and support needs. Without this, the risk of service attrition and device abandonment is high. Given Australia’s existing service constraints, limited funding and professional shortages, it may not be possible to meet all families’ needs related to SGDs through individual face-to-face models alone. Supplementary or alternative service models (including group models, peer-support, generic training programmes and telehealth options) may well be valuable. Increased efficiency and consistency could also be achieved through a review of inter- and intra-service co-ordination, particularly for children who require multi-agency support [36].

Acknowledgements The authors wish to thank the parents whose experiences and insights informed the findings of this study. The first author also wishes to thank the National Health and Medical Research Council (NHMRC) and Speech Pathology Australia for the financial scholarships that helped make 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 article.

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DOI: 10.3109/17518423.2013.857735

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Australian parents' experiences of speech generating device (SGD) service delivery.

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