Preliminary Investigation of the Perspectives of Parents of Children With Cerebral Palsy on the Supports, Challenges, and Realities of Integrating Augmentative and Alternative Communication Into Everyday Life

Almost 8% of children between the ages of 3 and 17 years in the United States experience communication disorders (Black, Vahratian, & Hoffman, 2015). For children with the most significant communication disorders, speech cannot meet all of their communication needs. In these cases, children often benefit from aided augmentative and alternative communication (AAC) technologies such as speech-generating devices or mobile technologies with apps. AAC technologies are often part of a multimodal AAC system¹ that also includes low-tech or no-tech AAC (e.g., picture communication boards) and unaided AAC (e.g., gestures, vocalizations). AAC technologies can improve communication and enhance meaningful participation for children who experience complex communication needs (Beukelman & Mirenda, 2013).

For children to experience these positive effects, AAC technologies must be designed to align with family values, goals, priorities, and lifestyle (Granlund, Björck-Åkesson, Wilder, & Ylvén, 2008). Technologies must support children in working toward family-identified goals (Calculator, 2014), and family members must be able to support their child in using AAC technologies (Anderson, Balandin, & Stancliffe, 2014). A mismatch between the technology and the priorities of the family will likely result in abandonment (Johnson, Inglebret, Jones, & Ray, 2006; Parette, Brotherson, & Blake Huer, 2000). Alternately, considering family priorities will result in greater AAC adoption and long-term use (Granlund et al., 2008).

Families of children with cerebral palsy (CP) represent one group of critical stakeholders. It has been estimated that 60%–85% of children with CP experience significant difficulties with communication (Hustad, Allison, McFadd, & Riehle, 2014); therefore, they often benefit from AAC. In addition to motor and communication impairments, children with CP often have associated impairments in sensation, perception, cognition, and behavior (Rosenbaum et al., 2007), which require an array of medical, educational, rehabilitation, and community services. Due to the complex nature of the disorder, it has significant lifelong implications for both children with CP and their families. Therefore, it is critical to design AAC systems that are responsive to the needs and priorities of the child with CP and his or her family.

Theoretical Framework: Family Systems Theory

Family systems theory provides a useful framework for understanding the centrality of families in the lives of children with CP who use AAC (see Mandak, O'Neill, Light, & Fosco, 2017). Family systems theory describes families as dynamic, interconnected systems in which all members are linked to one another or interdependent. Families exist in a state of homeostasis or stability, which can make them resistant to change (Minuchin, 1985). However, families are often able to adapt by adjusting in response to stress and the demands of everyday life (Olson, Sprenkle, & Russell, 1979). The introduction and ongoing use of AAC technologies within families creates demands that require adaptation. Families may be responsible for technical upkeep and programming of technologies (e.g., Goldbart & Marshall, 2004; McNaughton et al., 2008), and they often have the responsibility of supporting their child learn to communicate using the technology (Bailey, Parette, Stoner, Angell, & Carroll, 2006; Meder & Wegner, 2015). These responsibilities come in addition to everyday caretaking responsibilities, which are often significant for children with CP due to complex medical, physical, and educational needs.

Given the additional demands and roles imposed by the introduction of AAC technologies, families may demonstrate resistance to the integration of technologies, to maintain their existing family stability. Alternately, when AAC provides a tool for expressive communication that did not exist before (e.g., Romski et al., 2011), families may quickly adapt and make the technology part of the family homeostasis. Regardless of how the family adapts, AAC technologies must be designed to minimize demands on family members and match with existing routines to become integrated into life (Mandak et al., 2017).

Parents of children with CP can provide valuable input regarding how AAC technologies can be tailored to meet child and family needs. Parents are often primary stakeholders and interventionists in the AAC process (Granlund et al., 2008). They have expert knowledge about the needs and skills of their child, as well as their family's priorities and preferences for the assessment and intervention process (Goldbart & Marshall, 2004). Therefore, the focus for this study was gaining information from parents of children with CP who used AAC.

Previous Research on Parents' Perspectives

Parents of children with CP who use AAC have expressed a strong desire to be involved in decision making regarding their children's AAC technologies (Anderson et al., 2014; Goldbart & Marshall, 2004; Parette et al., 2000). They would like professionals to recognize their expert knowledge on the unique needs and skills of their child, as well as the aspects of AAC systems that could match with family values and lifestyle (Goldbart & Marshall, 2004). Parents value AAC to help their children fulfill various goals related to participation, socialization, and communication (e.g., Bailey et al., 2006; Calculator, 2014; Goldbart & Marshall, 2004).

Parents have reported both limitations and supports of AAC technologies. Limitations have included high cost of learning, reliability issues, slow rate of communication, weight of devices, available voices, and inefficiency and demandingness of alternate access methods (Bailey et al., 2006; Crisp, Draucker, & Ellett, 2014; Goldbart & Marshall, 2004; McNaughton et al., 2008; Parette et al., 2000). Technology supports have included icon prediction, environmental controls, and relevant vocabulary (Crisp et al., 2014; McNaughton et al., 2008).

Parents have described the process of learning to implement aided AAC technologies as stressful, time consuming, demanding, and overwhelming. Parents report that these challenges are often exacerbated by a lack of adequate training on the technical upkeep of the system and strategies for supporting their children to use the technology (Anderson et al., 2014; Goldbart & Marshall, 2004; McNaughton et al., 2008; Meder & Wegner, 2015; Parette et al., 2000). Parents have also cited barriers to forming collaborative relationships with professionals, including lack of shared goals, lack of family involvement, and lack of trained professionals (Anderson et al., 2014; Bailey et al., 2006; McNaughton et al., 2008).

Parents have begun to identify specific needs for addressing these challenges of implementing AAC technologies and collaborating effectively with professionals. To support their children to use AAC technologies, parents have identified a need for more extensive training regarding AAC that includes information regarding technical operation and customization of technologies, development of aided language, and effective interaction strategies to use at home (Anderson, Balandin, & Stancliffe, 2016). Parents have also identified a need for greater sensitivity from professionals regarding the demands, needs, routines, and realities of family life (Goldbart & Marshall, 2004; McNaughton et al., 2008; Parette et al., 2000).

Study Aims

Previous research has revealed challenges and support needs for families in implementing technologies; however, parents have not been asked how these challenges and needs impact the use of AAC in valued family contexts in everyday life. Additionally, very little research has examined parents' perspectives on the specific AAC technology features that support or present challenges for participation in family-prioritized goals. While previous research has acknowledged that parents are experts on their child's needs (e.g., Goldbart & Marshall, 2004), parents have not been asked about how their child's specific needs and skills impact use of AAC in everyday life. Finally, while previous research has investigated parents' perceptions of the parent–professional relationship (e.g., Anderson et al., 2014) and best practice advocates for family-centered AAC services (Mandak et al., 2017), little is known about parents' perceptions of their roles in the AAC assessment and intervention decision-making process.

The aim of this study was to gain parent perspectives on how AAC technologies were integrated into everyday life. Four questions guided this study: (a) “What are parents' perceptions of how AAC technologies support their child's participation in family goals and the functional contexts of everyday life?”; (b) “What features of AAC technologies present challenges or supports to participation and integration of technologies into everyday life?”; (c) “What are parents' perceptions of how their children's strengths, skills, and needs facilitate or present barriers for using AAC technologies in everyday life?”; and (d) “What are parents' perceptions of their involvement and roles (desired and actual) in the AAC assessment and intervention process?”

Method

This study used a phenomenological qualitative research design. A phenomenological study describes the common meaning of a lived experience of a phenomenon for a group of individuals (Creswell, 2012). It involves collecting data from individuals who have experienced a specific phenomenon and developing a description of what they experienced and how they experienced it (Moustakas, 1994). Semistructured interviews were used to gain in-depth information about participants' experiences (Kvale & Brinkmann, 2009). The consolidated criteria for reporting qualitative research guidelines were followed to ensure explicit and comprehensive reporting of the study methods and results (Tong, Sainsbury, & Craig, 2007).

Participants

Ethics approval was obtained from the Human Research Protection Program prior to commencing the study. Convenience sampling was used to recruit participants, in which participants who met the required criteria were selected on a first-come-first-served basis. This sampling method can bias outcomes because the convenience sample may not be representative of the broader population of parents of children with CP who use AAC, hence the preliminary nature of this study (Robinson, 2013). Participants were recruited though direct contact with family members, speech-language pathologists (SLPs), and other professionals who work with children who use AAC at various schools, private practices, and hospitals. Recruitment advertisements were shared using various methods including (a) web postings to Internet listservs, (b) postings to social media sites, and (c) direct e-mails to clinicians, researchers, and other professionals. Participants who inquired about the study were sent detailed information about the study objectives, requirements, and procedures. To participate, individuals were required to be English-speaking parents or primary caretakers of a child who (a) had CP, (b) was between the ages of 6 and 14 years, and (c) used a high-technology AAC system in the last year.

Fourteen parents or primary caretakers responded to the recruitment flyers and expressed interest in participating in the study. Four parents were excluded because they did not meet the inclusion criteria. Reasons for exclusion were as follows: (a) Children were older than the specified age range, (b) children had a diagnosis other than CP, or (c) parents could not participate in a video or phone interview. Another parent expressed initial interest in participating by e-mailing the first author; however, follow-up attempts to reach the parent were unsuccessful. Nine parents (eight mothers, one father) of eight children who met the inclusion criteria participated in the study. Seven interviews were conducted with mothers, while one interview included both parents (i.e., mother and father). Table 1 presents demographic information for each parent and child. Pseudonyms for parents, children, and other family members were used to protect confidentiality. All parents indicated their race and ethnicity was White, not Hispanic or Latino, and they were all college educated. The limitations of the sample are considered in the discussion. Seven parents resided in the United States, and two parents resided in the United Kingdom. The seven parents from the United States represented six different states in a variety of geographical regions, including four parents from the Southeast, two parents from the West, and one parent from the Midwest. Parents had between one and four children.

Table 1 also contains demographic information for the children who had CP. The children were between the ages of 6 and 14 years. Five children were served in inclusive school settings with their typically developing peers, two children were served in mostly segregated settings (i.e., self-contained schools or classrooms), and one child was homeschooled. According to the Gross Motor Function Classification System (Rosenbaum, Palisano, Bartlett, Galuppi, & Russell, 2008), the children's motor skills ranged from walking without restrictions (i.e., Level I) to experiencing severe limitations in self-mobility (i.e., Level V). Children used a variety of AAC technologies; two children used apps on mobile technologies (i.e., Proloquo2Go), while the remaining children used dedicated AAC technologies (e.g., PRC Accent, NOVA Chat, Tobii i15). All of the children used direct selection to access their devices. Four children used eye gaze, three children used their fingers, and one child used her whole hand.

Materials

Participants completed a short demographic questionnaire online prior to the interview. A semistructured interview guide was used during all interviews that included a set of predetermined, open-ended questions (see Supplemental Material S1). The questions from the interview guide were developed based on best practices in gaining information from families (e.g., McWilliam, 2010). The questions were created to fill gaps in existing knowledge, after a review of previous qualitative work (i.e., Anderson et al., 2014; Bailey et al., 2006; Crisp et al., 2014; Goldbart & Marshall, 2004; McNaughton et al., 2008; Parette et al., 2000). Finally, the questions had a theoretical basis in family systems theory (e.g., Mandak et al., 2017; Minuchin, 1985). After developing the questions based on theory and a review of the literature, the first author sought feedback from three researchers with expertise in AAC and qualitative research who had experience working with families of children who used AAC. A pilot interview was conducted with a clinician who had extensive experience working with parents of children with CP who used AAC technologies. Based on feedback from the researchers and clinician, modifications were made to the wording, order, and number of questions (Creswell, 2012; Kvale & Brinkmann, 2009).

Procedure

Interviews were scheduled at a time that was convenient for parents and via their preferred method (i.e., phone or web conference). Interviews were completed via phone (n = 2) or web conference (n = 6). All interviews were conducted by the first author, an SLP with experience working with parents of children who use AAC. Both the interviewer and the interviewees were in private, quiet locations at home or at the workplace during the interviews. They were the only individuals present during the interviews. The interviews lasted about 60 min on average and ranged from 45 to 80 min. All interviews were completed during a single session, and the interviews were conducted over a period of 2 months. The interviewer followed the semistructured interview guide to ensure that data collection was systematic across respondents. Probes were used to obtain more details, ask for elaboration, and make clarifications. Follow-up questions were used to explore topics in more depth that were raised by the participants (Patton, 2015). All interviews were recorded using QuickTime Player.² Audio recordings were transcribed verbatim by the first author or trained research assistants (RAs). Nonverbal information such as pauses, laughter, and sighs were included in the transcripts.

The interviewer took notes during interviews. The notes served to provide reminders of follow-up questions to seek further detail. The interviewer also wrote key phrases and words in quotation marks to capture the participant's own language (Patton, 2015). These notes facilitated later analysis by providing a preliminary descriptive summary of the data that would be expanded upon throughout analysis (Hays & Singh, 2014).

Data Analysis

Data analysis took an inductive approach, in which themes emerged from the data and were grounded in the participants' experiences (Creswell, 2012). Data were analyzed based on an adapted version of Braun and Clarke's (2006) recommendations for thematic analysis. Thematic analysis is “a method for identifying, analyzing, and reporting patterns (i.e., themes) within data” (Braun & Clarke, 2006, p. 79). Figure 1 provides a schematic of the data analysis process, which included six steps. Data analysis was a team approach, including the first author and the four trained RAs.

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Familiarize and Identify Initial Ideas

The research team began data analysis by repeatedly reading the transcripts in an active way to immerse themselves in the data (Braun & Clarke, 2006; Creswell, 2012). This step involved reading and rereading the text, highlighting portions of the text that were meaningful, and noting initial ideas in the margins for each portion of highlighted text. All members of the research team (i.e., first author and four trained RAs) completed this step of the data analysis. The RAs were trained on this step of data analysis during an in-person team meeting, in which every team member highlighted and noted observations for a printed interview transcript, followed by a team discussion of salient ideas. Following the initial training, team members performed this first step of data analysis using word processing software for each interview transcript. The initial ideas generated during this step created the basis for codes and themes, which are revisited later in the data analysis process.

Unitize and Organize Text

The second step of data analysis began with unitization (Campbell, Quincy, Osserman, & Pedersen, 2013; Vaughn, Schumm, & Sinagub, 2012). This refers to the process of identifying the units of information that later become the basis for applying codes. The first author segmented the data into thought units. A thought unit has been defined as “the smallest amount of information that is informative by itself” (Vaughn et al., 2012). Thought units ranged in length from a short phrase to a sentence or a short paragraph. Thought units help to organize text into manageable units, to eliminate confusion when comparing the codes of two or more coders (Campbell et al., 2013). Participants contributed an average of 285 thought units (range: 222–473).

Develop Initial Codebook and Code Data Subset

Codes have been defined as “tags or labels for assigning units of meaning to the descriptive information compiled during a study” (Miles & Huberman, 1994, p. 56). The ideas identified by the research team in the first step of data analysis served as the initial codes. The first author developed an initial codebook that included code names, code definitions, and an example piece of data for each code (MacQueen, McLellan, Kay, & Milstein, 1998). Then, the first author coded a subset of the unitized data by applying one code to every thought unit. Data coding involved a process of constant comparison, whereby the first author used the existing coding scheme to code each transcript as it was completed and added codes to the codebook for new pieces of data that were not included into the existing coding scheme (Creswell, 2012). The initial coding resulted in the identification of 61 distinct codes.

Identify and Define Themes

Recurring regularities in the data revealed patterns that could be sorted into themes (Patton, 2015). The process of identifying themes was conducted via consensus. Each of the 61 preliminary codes was written on its own index card. The first and second authors, along with the research team, organized the codes into piles based on codes that related to one another. Ultimately, the 61 codes were reduced and combined into five major themes, each with at least two subthemes. Names and operational definitions were developed for each of the themes and subthemes in the codebook (see Supplemental Material S2).

Code Data and Assess Reliability

The first author reviewed the codebook with the research team by discussing the major themes, subthemes, and codes. The coding process was divided into two distinct substeps: (a) initial coding and subjective assessment of consistency and (b) final coding and calculation of intercoder agreement. During the first substep, each member of the research team coded a subset of data, and the first author facilitated a discussion regarding the coding process. The team discussed the codes assigned to each thought unit and subjectively assessed the consistency of code application. Coders discussed thought units for which they did not agree, discussed the reasons for the discrepancies, agreed on a solution, modified the codebook, and recoded the data accordingly (Guest, MacQueen, & Namey, 2012). This substep allowed the entire team to provide feedback on the codebook and make modifications to enhance clarity and consistency of code application before final coding.

During the second substep, each transcript was coded by two independent coders (i.e., the first author and an RA), and reliability was calculated at the level of the 13 subthemes. Percent agreement was chosen as the metric to assess intercoder reliability (Campbell et al., 2013; Miles & Huberman, 1994). While some researchers have advocated for the use of a statistic that controls for chance agreement such as kappa or alpha (e.g., Hruschka et al., 2004), percent agreement was chosen for several reasons. First, there were a large number of subthemes (i.e., 13), which reduced the likelihood that coders would agree by chance. Second, not all codes had an equal probability of being used, which is an assumption when using alpha or kappa (Campbell et al., 2013). Finally, since this was an exploratory study, percent agreement was deemed to be an acceptable approach, and it was used in a recent qualitative study in the field (Mandak & Light, 2018). Percent agreement was calculated as the number of agreements divided by the number of agreements plus disagreements (Miles & Huberman, 1994). The aim was to achieve intercoder reliability of 80%–90%, which is considered an acceptable level of agreement (Guest et al., 2012; Miles & Huberman, 1994). If an acceptable level of agreement was not reached, modifications were made to the codebook and the data were recoded. Agreement was 83% on average across transcripts and coders, with a range of 80%–89%.

Resolve Discrepancies and Sort Data

Any discrepancies in codes were resolved through discussion until consensus for the final code was reached (Campbell et al., 2013; Hruschka et al., 2004). Finally, the data were sorted in Microsoft Excel,³ so that all of the data assigned a certain code were grouped together (Braun & Clarke, 2006).

Research Quality Indicators

Credibility

Several strategies were used to enhance credibility. First, a peer review was completed (Creswell, 2012; Hays & Singh, 2014), which is an external check of study procedures and results by an individual with expertise in the area. The second author served as the peer reviewer by asking questions about data collection and analysis procedures, meanings, and interpretations throughout the study. A second strategy to enhance credibility was triangulation, which refers to “using multiple forms of evidence at various points of qualitative inquiry to support and better describe findings” (Hays & Singh, 2014, p. 207). Specifically, this study utilized triangulation of investigators, by using a team data analysis strategy (Hays & Singh, 2014). This helped to ensure that the themes identified were not based on only the first author's interpretation of the data but rather a larger team of investigators. Finally, the first author wrote a bracketing statement (see Supplemental Material S3) that summarized the lens used to view the study, personal biases, and past experiences with the phenomenon. The first author repeatedly used self-reflection throughout data collection and analysis to further bracket biases and to ensure that interpretations reflected participant experiences (Moustakas, 1994).

Transferability

The goal of transferability is to provide a detailed description “so readers can make decisions about degree to which findings are applicable to individuals or settings in which they work” (Hays & Singh, 2014, p. 200). To enhance transferability, this study provided a “thick description” (Geertz, 1983) or a detailed account of researcher questions, recruitment, participants, data collection procedures, data analysis, and participant quotations.

Reliability

Intercoder agreement between the first author and an RA was calculated for all of the data to determine the extent to which independent data analysts coded the data in the same way. Any discrepancies that existed after coding were resolved via consensus coding (Hays & Singh, 2014). Assessing and achieving reliability between coders ensured that the codebook was a reliable instrument for measuring the thematic content of the data (Hruschka et al., 2004).

Confirmability

Confirmability refers to the degree to which findings are genuine reflections of the participants investigated. Member checking was used, in which participants were asked to evaluate whether the researcher's interpretation of their experiences was accurate (Given, 2008). Member checking was an ongoing process during data collection. During the interviews, the interviewer asked for clarification and elaboration and provided summarizing statements to ensure that the parents' opinions were captured accurately (Patton, 2015). A member check was also completed after data analysis was completed. The first author shared the themes, subthemes, and examples with participants and asked the participants whether or not the themes were consistent with their experience. Six parents responded to the member check, and they all indicated that the themes and subthemes were consistent with their experiences.

Results

The results are presented according to five themes: integrating AAC into life, AAC technologies, child needs and skills, parent responsibilities and priorities, and AAC process and decision making. Themes, subthemes, and examples are summarized in Table 2.

Integrating AAC Into Life

Integrating AAC Into Family Life

Parents discussed success stories, challenges, and realities for integrating AAC into family life. Children were able to successfully use technologies within family activities, such as games, play, and mealtimes. Bailey described how she and her son were able to use his technology within one of her son's preferred activities:

While AAC technologies were integrated into some family activities, parents also described challenges. Morning and bedtime care routines were a particularly difficult time to integrate AAC technologies, especially for children using eye gaze devices that were primarily available when mounted on wheelchairs. Shannon described her son's morning care routine saying: “He doesn't have access to [the device] until he's dressed. When you're lying in bed, and then someone's dressing you, and then you're being moved into a wheelchair, that's quite hard to have a device available.” Even though providing access to AAC technologies was a challenge in these contexts, children were able to communicate successfully using unaided and low-tech forms of AAC, such as gestures for yes/no, partner-assisted scanning, and low-tech communication books. Some parents preferred to rely primarily on unaided communication at home, as Emily described:

Parents also described success stories of using AAC with various family members, including use of AAC within sibling relationships. Some parents described sibling's involvement with programming, modeling use of the technology, or charging batteries. Allison described a positive experience: “Our older son, knows how to do it [add vocabulary]. He has added things when they're playing. So he will add dialogue for Zane. He'll make up names for people and add them.” Parents also described use of AAC technologies with extended family members and other people at home, including grandparents, relatives, and home care aides.

Finally, parents discussed supports for family functioning, which included other families of children who used AAC, home care aides and respite services, and online blogs and support groups. Lucy described supportive interactions with other families of children who used AAC: “What we've found really helpful is finding other families who are AAC users. I don't think we would be where we are today if I hadn't found other families that were successful” (Lucy).

Integrating AAC Into School and Community Life

Parents discussed the supports, challenges, and realities of using AAC with multiple partners in school and community settings. Several parents discussed the knowledge and training needed for partners as a challenge:

Parents described communication partner attitudes and responses as both a support and a challenge. Several parents described partners' use of effective interaction strategies to promote their child's use of AAC. School professionals (e.g., paraprofessionals, teachers) who modeled use of AAC, added vocabulary, and made sure the device was “part of things” (Emily) served as a support for several children. Parents also described some success stories of using AAC with peers. One parent described how the eye gaze video games on her daughter's device facilitated interactions with peers. Another parent reported that her son's peers “love it because it looks like an iPad to them” (Lucy). However, one particular challenge for peers was providing wait time:

Parents discussed both success stories and challenges related to using AAC technologies in various contexts. Several parents discussed how their child was able to successfully use his or her AAC technology at school:

However, several other parents reported that they felt that their children's technologies could be integrated more fully into the school day. Parents also discussed challenges and supports surrounding their child's use of AAC technologies in community, outdoor, and physical activities (e.g., swimming, riding bikes, walking, riding horses). Weather (i.e., rain and sunlight) and uneven surfaces presented challenges for integrating technologies into various community contexts. The parents of children who used eye gaze–controlled devices discussed inability to access their technologies in the sunlight, which caused a great deal of frustration. Shannon summed up the challenges: “[My son] really needs it with him all the time, but there are still these times or situations where you have to suddenly take away his voice, just because of the reality of where technology is at.”

AAC Technologies

Supports of Technologies

Parents discussed supports related to vocabulary and programming. The vocabulary available on their children's devices served as a support that allowed their children to express a variety of concepts related to their interests, physical states (e.g., emotions, pain), academics, and displaced talk. Several parents also discussed the ease of programming, describing it as “easy,” “very straight forward,” and “very quick.” Parents generally indicated that they were able to add vocabulary within daily interactions. Jackie said, “We were watching a garbage truck, and he didn't have garbage truck he had fire truck, ambulance, every other truck but no garbage truck. So it's easy enough to add in on the fly.”

Parents also discussed supports related to design functions and features. Children's ability to access multiple functions and features such as environmental controls, games and leisure activities, software programs, Internet, multiple languages, and other communication tools (e.g., social media, e-mail, Skype, Alexa) were technology supports. Access to games and leisure activities (e.g., painting, making music) also enhanced the appeal of technologies and increased children's motivation and participation. Elizabeth described how the eye gaze video games on her daughter's device were “one of her favorite things to do.” Allison described how the multiple languages feature supported Zane to participate in Spanish class, “You push a button, it changes the whole thing to Spanish—which is actually kind of cool.”

Limitations of Technologies

Parents also discussed limitations related to vocabulary and programming. As one parent explained, although programming was “pretty easy,” she went on to add that “it's not intuitive. You definitely have to learn how to do it. And, there are a lot of keys involved” (Emily). Other parents described that, while adding vocabulary was easy for them, it was not as easy for other partners (e.g., father, grandparents).

Parents also discussed limitations related to design functions and features. Parents described limitations in their children's ability to access multiple functions and features, such as Facebook and Alexa. Finding appropriate software and games that could be accessed via eye gaze was also a challenge. Parents also reported limitations in technologies due to a lack of fit with their child's needs. For example, one parent discussed how her child's system was organized alphabetically, even though he was not literate. Another parent described how the placement and size of the on/off button was inaccessible for her son.

The physical design of technologies was another limitation. One of the primary limitations was that technologies blocked children from engaging with partners:

Other parents discussed the size and weight of the technologies and the challenges this created for finding effective and robust mounting solutions. Lack of durability was also a limitation. Several parents described current systems as “fragile” and prone to hardware issues.

Finally, parents discussed issues of access and reliability. With regard to access, parents described effortful and inefficient access methods. Due to motor limitations, Jackie discussed the effort required to make selections for her son: “I mean it is exhausting for him to use the AAC, he would use it more if it wasn't so much work for him to get that arm up and get it directionally on the exact button.” Lucy described the challenges of using eye gaze access for her son:

Parents also described that the precise position needed to successfully utilize eye gaze methods was a challenge, particularly for providing access to AAC when their children were not in their wheelchairs. A final limitation reported by parents was reliability issues including crashes and glitches in technology (e.g., screen freezing, operating slowly).

Ideal Technologies

Parents described the functions and features that would be included on ideal technologies to improve their functionality and use within daily activities, which included facial recognition software, ability to control a wheelchair, and potential augmented reality applications. Lucy described how facial recognition software, as part of a “smart home,” could allow her son to live more independently in the future:

Other parents hoped that their children could achieve greater independent mobility in the future, by using their AAC devices to control their wheelchairs. Parents discussed ideas such as “Google glass” or “augmented reality glasses” having applications to their children's AAC technologies. Jacob described this saying, “The AAC needs to be a natural part of the person's existence.”

Parents also provided suggestions for the physical design of ideal technologies, describing them as small, light, wearable, discrete, and durable. Several parents suggested technologies could be wearable:

Parents also discussed a need for a greater variety of affordable, accessible, and reliable mounting options. Finally, several parents described durability as an ideal feature, describing ideal technologies as “robust,” “sturdy,” and able to “withstand a banging.”

All parents described features of ideal technologies that would decrease the effort of use and improve efficiency, which included brain–computer interfaces, sentence prediction, and improved eye gaze access. Parents identified the potential to use “EEG sensors” and brain–computer interfaces for their children to have a more efficient and less effortful access method: “I would love a world where his thoughts could be vocalized without the need to have all of this difficulty with muscle coordination going on” (Shannon).

Child Needs and Skills

Developmental Skills and Needs

Parents discussed the developmental skills and needs of their children and how these skills facilitated or presented challenges for using AAC technologies. With regard to motor skills, parents discussed how spasticity, lack of motor control, and difficulty with fine motor skills such as finger isolation created challenges for using technologies. Amelia's daughter Julia used direct selection with her whole hand, due to difficulties with finger isolation, and Amelia discussed how this limited the number of symbols:

Parents also discussed how their child's attention, memory, and cognitive abilities impacted their use of AAC. Parents described their children as “bright,” “fully aware,” and “super intelligent,” which made learning and using AAC easier. Other parents discussed difficulties with attention and distraction that created some challenges. Finally, children's psychosocial skills such as motivation and self-advocacy impacted use of AAC. Motivation could serve as a support when the message was “important” to the child; however, motivation could be affected by the effort of using the technology, as Jackie described: “If he's motivated enough he can get to every button on the screen. It's just a lot of work for him and by the end of the day at school he's done. He has to want to do it.” Children also demonstrated self-advocacy skills. One parent discussed how her son took ownership of his AAC device: “He'll carry it to the table, he'll carry it to the couch. It's really wonderful to see. Feeling like, I know what this is for and it's helpful” (Bailey).

Communication Skills and Needs

Children employed various operational strategies to use AAC effectively such as turning the technology on and off, switching languages, navigating between displays, changing the volume, using selection techniques (e.g., eye gaze), and controlling other apps and communication tools. Parents also discussed linguistic skills related to their children's ability to use various vocabulary concepts, combine symbols on their AAC technologies, understand spoken language, and demonstrate literacy skills. Parents described how their children were able to independently form multisymbol utterances; however, several parents indicated their children had difficulty with syntax: “Her sentences and her syntax…don't sound that natural. She'll put a sentence together and the word order will be very jumbled” (Emily). With regard to literacy skills, most children had emerging literacy skills and were beginning to explore typing on their technologies, while one child (Luke) had advanced literacy skills and relied on typing (via eye gaze) to generate his messages.

Parents also discussed skills and needs related to the use of AAC within daily interactions (i.e., social skills and strategic skills). Children demonstrated various social skills and needs related to engaging in conversations, using greetings, and using a variety of communication functions. Parents discussed how their child had progressed in their social skills since the introduction of the AAC technologies, and their language had become more “witty,” “colloquial,” “chatty,” and “funny.” Other parents discussed how their children's communication primarily concerned wants and needs, and social skills usually were a goal for these parents. Finally, parents described strategic skills that their children used to maximize their communicative efficiency and effectiveness such as use of multiple modalities, communication breakdown repair strategies, and use of telegraphic utterances to increase rate.

Parent Responsibilities and Priorities

Parent Roles

Parents described leadership as a primary responsibility. Allison described this role saying: “We aren't going to rely on anybody else to do it. We're doing it…. He would not be at the place where he is if we hadn't taken it on.” Parents took the lead by finding appropriate technologies, serving as the primary communication partners for their children, and determining reliable communication methods (aided and unaided). Parents were experts on their children and their needs, and they advocated to make these needs known to professionals and funders. Some parents described their advocacy role as having to “fight for” (Kelli) their child and make sure others “respect use of AAC and adapt to it” (Shannon). Parents also felt a responsibility to educate themselves and other communication partners about AAC and how to support their child in using AAC. This included educating home care aides, teachers, spouses, extended family members, and other school professionals.

Parents also discussed specific device-related roles and interaction strategies they used to support their child's use of AAC. Parents reported adding academic, personal, and interest-related vocabulary, oftentimes on the fly within everyday activities. Parents also described roles in technical upkeep of devices by running updates and finding software programs for their children to engage in leisure activities. Parents used various interaction strategies to encourage their child's use of AAC, such as modeling use of the device, prompting, providing wait time, responding contingently, providing choices, and asking questions. Emily described her use of modeling: “If I'm saying ‘Do you want to go to the pool today?' I'll either use ‘want,' or ‘pool,' or ‘today' as part of what I'm saying. I'll say it and I'll hit that key at the same time.”

Parent Goals

Parents most often prioritized their children's social skills including use of a variety of communication functions, improved conversational skills, expression of humor and personality, and interaction with a variety of partners. Amelia described social skills as a priority for her daughter: “Even if she can't do long division and know osmosis, I don't really care. Because it would get her farther in life to have those interpersonal communication skills.” Several parents expressed priorities for their children to improve their linguistic skills, by forming more complex utterances and improving their literacy skills. Parents also had goals related to their children's operational skills (e.g., e-mail and Internet use). Finally, parents discussed priorities related to increased independence and inclusion for their children (i.e., independent living, inclusion with typically developing peers).

AAC Process and Decision Making

Technology Selection and Learning

Many parents were “hands on” in the technology selection process, oftentimes purchasing the technologies themselves. Parents discussed the process of learning technologies, and they indicated that technologies often had a “steep learning curve” up front. Several parents indicated lack of training on AAC as a challenge that could be “bewildering.” One parent described the learning process: “We didn't know what we were doing…so we were just figuring it out as a family” (Allison).

Parents' Feelings and Emotional Responses

Parents discussed feelings and emotional responses surrounding their child's use of AAC and their roles in the process. One parent described her emotional response to the competing demands she experienced:

Parents felt a mix of emotions about the future, with some expressing positive emotions such as hopefulness, indicating that there was “loads of potential” in the future. Other parents felt more unsure about the future and what their child would be able to achieve.

Changes Over Time

Parents discussed changes that occurred over time throughout the process of supporting their children to use AAC. Transition times were a challenge, especially when families moved or children changed schools, because it required families to “start over” with a new group of professionals. Parents discussed improvements in technologies over time, such as improved ability to hear devices, lighter technologies, and greater reliability.

Collaboration With Professionals

Parents discussed positive collaborations with professionals who helped to program and modify technologies, provided training for school staff, and shared information to support family decision making. Shannon said:

Parents also discussed negative experiences in collaborating with professionals, which generally involved mistrusting professionals, uneducated professionals, or lack of “buy-in” from professionals at school. Parents discussed that professionals at times doubted what their children were capable of and were hesitant to recommend technologies despite parents' interest. Professionals sometimes did not have the “skill set” in using technologies.

Discussion

The aim of this study was to gain parents' perspectives on how AAC technologies were integrated into the functional contexts of daily life, as well as perspectives on child needs and AAC decision making. Parents indicated that AAC technologies supported their children to work toward family-identified goals. Parents were able to support their children in using AAC technologies, and they felt “hopeful” about the potential of future technologies. Nonetheless, they recognized that challenges still remain, which require “a lot of work to be done” to truly integrate technologies into life. The discussion will overview each of the five themes.

Integrating AAC Technologies Into Life

Parents discussed supports and success stories for integrating AAC technologies into life including use of AAC with various partners at home (e.g., siblings, extended family members, care aides), in various family routines (e.g., playing games, dinner times), at school, and in the community. Communication partners who were knowledgeable about interaction strategies (e.g., modeling, providing wait time) and operational competencies (e.g., programming, technical upkeep) supported the integration of AAC into various routines at home, at school, and in the community. Parents also identified supports for family functioning such as interactions with families of other children who used AAC, online blogs and support groups, and home care aides. Previous research has demonstrated that perceived social supports and support networks foster positive family adaptation to the stressors of raising a child with a developmental disability (e.g., Greeff & Nolting, 2013). Families in this study also benefited from these social supports. SLPs may play a role in assisting families to identify social supports to maximize family functioning.

The parents in this study were able to integrate AAC effectively in a variety of activities; however, some families may value their child's use of AAC within everyday activities but require additional support from professionals to integrate AAC effectively (e.g., Anderson et al., 2016). Professionals should work collaboratively with these families to identify contexts in which they value their child's use of AAC and then brainstorm with families about ways to integrate AAC. Integrating AAC into existing, valued activities should serve to maintain the family's homeostasis (i.e., stability; Mandak et al., 2017). SLPs can coach family members and other communication partners (as needed) in the knowledge and skills to operate AAC technologies and use appropriate interaction strategies, to ensure that AAC can be effectively integrated into these family-prioritized contexts.

AAC Technologies

Parents recognized the supports of technologies. For example, while parents have previously found programming technologies to be overwhelming (e.g., McNaughton et al., 2008), several parents in this study indicated ease of programming as a support. However, parents also recognized limitations of technologies that need to be addressed to maximize efficiency, minimize demands of use, and ensure integration of AAC technologies into everyday life. It is critical that AAC manufacturers and technology developers engage in participatory design research with individuals who use AAC and their families to identify challenges and work toward developing technologies that can be used in all contexts (Muller & Druin, 2009). Future research and development should involve a multidisciplinary approach that includes children who use AAC and their families, clinicians and practitioners, AAC researchers, rehabilitation engineers, and mainstream technology developers.

Research has begun to investigate some of the ideal features identified by parents. The viability of brain–computer interfaces as an access option has received considerable attention (e.g., Brumberg, Pitt, Mantie-Kozlowski, & Burnison, 2018). However, brain–computer interfaces are generally not as efficient as existing AAC access methods, and they do not yet have the ability to directly translate thoughts or speech plans into communication. It is possible that one mother's dream that her son's “thoughts could be vocalized” may be feasible in the future; however, brain–computer interfaces are not currently a viable access option for children, and much more research has to be done.

Child Skills and Needs

Parents reported that their children were able to demonstrate various operational skills (e.g., navigating between displays, using environmental controls), linguistic skills (e.g., forming multisymbol utterances), social skills (e.g., using a variety of communicative functions), and strategic skills (e.g., using multiple modalities to increase communication effectiveness) within everyday contexts. Parents also recognized some areas of difficulty, particularly related to advanced conversational skills and syntax.

Parents are experts on their children, and they have expert input regarding the developmental needs and skills and psychosocial factors that facilitate or present barriers to their children's use of AAC; therefore, professionals should seek this input from parents and utilize it to design AAC systems that match with individual children's needs. Professionals should support parents in promoting their children's development in various domains of operational, linguistic, social, and strategic competence. In particular, families may need additional support in helping their child to develop more advanced conversational and syntactic skills.

Parents' perceptions of their children's difficulties with advanced conversation and syntax are consistent with the prior literature, which has indicated that the generative language capacity of children who rely on AAC is often limited. Children who use AAC tend to form mostly one- and two-word messages, consisting primarily of nouns, that lack morphological and syntactic elements such as prepositions, verbs, articles, and pronouns (e.g., Binger & Light, 2008; Soto & Clarke, 2017). However, intervention research has indicated that, with appropriate supports, children can learn to use syntactically correct early phrases and grammatical morphemes. Intervention techniques including the use of single-meaning graphic symbols, access to vocabulary on one communication display to minimize navigation demands, aided AAC models, recasts, and contrastive targets can be effective to teach grammatical morpheme use and symbol combinations (e.g., Binger, Kent-Walsh, King, & Mansfield, 2017; Binger, Maguire-Marshall, & Kent-Walsh, 2011; Binger & Light, 2008). Furthermore, conversation-based intervention that includes adult verbal scaffolding can improve production of verbs, pronouns, and bound morphemes in the conversation of children with motor speech disorders who use AAC (Soto & Clarke, 2017). SLPs may work with parents to demonstrate use of these strategies to improve their children's syntactic and conversational skills.

Parent Responsibilities and Priorities

Parents took a leadership role in the AAC process by assuming various responsibilities such as researching and purchasing their children's technologies, using interaction strategies, educating other partners, advocating for their child's needs, and programming technologies. Clearly, parents were required to manage various roles and responsibilities due to the introduction of AAC technologies. Professionals must be sensitive to the competing needs and demands of everyday life (McNaughton et al., 2008). Professionals may be able to help parents by managing some of the programming and technical upkeep of AAC technologies and coaching parents in using evidence-based interaction strategies, as needed.

Professionals must also be aware that parents' roles and priorities in the AAC assessment and intervention process will likely vary across diverse cultural, linguistic, socioeconomic, racial, and ethnic backgrounds. The limited demographics of the families in this study—that is, that all participants were White, college-educated parents—mean that generalization to a broader population is not yet possible. For instance, the “hands-on” approach observed in the current study may not be universal, as some families may prefer to defer to professionals as the experts and look to them to take the lead on assessment and intervention decision making (Parette et al., 2000). While this can sometimes be perceived by professionals as disinterest or noncompliance, it may instead reflect a family's cultural values on leadership and/or limited communication skills in English (McCord & Soto, 2004). Furthermore, families from a low socioeconomic status (SES) who experience multiple daily stresses (e.g., lack of resources, working multiple jobs) will have a diminished capacity to engage in the AAC process (Brassart, Prévost, Bétrisey, Lemieux, & Desmarais, 2016). Professionals must utilize culturally sensitive practices that demonstrate understanding and empathy for a family's values, beliefs, and goals, as well as awareness of cultural differences (Harry, 2008).

AAC Process and Decision Making

Parents recognized both positive and negative experiences in collaborating with professionals. Professionals must seek to form collaborative relationships with families that are characterized by mutual trust and respect, information sharing, and recognition of parents as experts on their children's needs (King & Chiarello, 2014). Parents in this study indicated that the most effective professionals were those who provided families with information, so they could make informed choices. Professionals should engage in participatory help-giving practices that are aimed at actively involving families in decisions and choices, responding to family concerns and priorities, and demonstrating sensitivity to family needs. These types of practices have been found to be strongly related to a range of positive family outcomes (e.g., program satisfaction, child positive behavior functioning, family well-being, parenting behavior; Dunst, Trivette, & Hamby, 2007). Ultimately, this will allow professionals to empower families to make informed decisions. To achieve effective collaboration with families, increased training is needed at both the preservice and in-service levels for SLPs. Parents in this study indicated that professionals were sometimes uneducated about AAC, and some professionals did not demonstrate effective help-giving practices. Therefore, training should be focused on improving professionals' knowledge and skills related to AAC assessment and intervention, as well as knowledge and skills related to working effectively with families (Mandak & Light, 2018).

Limitations and Future Research

This study revealed a wealth of information from parents of children with CP who use AAC technologies, to improve the design of AAC technologies and enhance professional practice. A variety of strategies were used to enhance the rigor of the study (e.g., peer review, bracketing, triangulation, intercoder reliability, member check). However, there are several limitations that warrant consideration and point toward areas for future research.

First, the results of this study may not be generalized to all parents of children with CP who use AAC technologies. In particular, parents from culturally and linguistically diverse backgrounds, parents with low SES, and fathers were underrepresented. A close look at the current demographics in the United States reveals the narrowness of the sample. The United States is diverse in terms of race and origin, with only 60.4% of the population identifying as White alone (not Hispanic or Latino; U.S. Census Bureau, 2018). Linguistic diversity is also on the rise, with 21.3% of the population speaking a language other than English at home (U.S. Census Bureau, 2018). Additionally, while all the parents in the current sample had college education, only 32.7% of women aged 25 years and older in the United States have a bachelor's degree or higher (Ryan & Bauman, 2016). The absence of families from low socioeconomic backgrounds likely influenced the results of this study. These families are less likely to have the time and resources to take advantage of AAC technologies in the same way as the parents who were included in this study. For example, parents from low-SES backgrounds may be working multiple jobs, or they may lack the education and financial resources to purchase technologies. It is of utmost importance that this study is duplicated with different populations, to reveal the perspectives of families from diverse backgrounds.

Second, the findings do not include perspectives of other family members, the child using the technology, or other frequent communication partners. Nonetheless, because parents are often primary members of the collaborative AAC team, gaining their perspectives was an important first step for understanding how AAC technologies are integrated into life.

The questions included within the interview guide and the follow-up probes are a potential limitation. The first author's decisions about the topics covered, question phrasing, and follow-up questions could have affected parents' responses. However, several steps were taken to minimize these limitations, including a literature review to inform the selection of interview questions, the feedback obtained from qualitative researchers on the interview guide, and high fidelity (i.e., 94%) for adherence to the interview guide by the first author during interviews.

Finally, information regarding years of intervention using AAC, current frequency of intervention, context of intervention (beyond school placement), and amount of parent training was not collected in a systematic way from the parents in this study. These factors likely influence how families view AAC and are able to integrate technologies into their lives, making them important variables to explore in future research.

Future research should attempt to gain input from multiple stakeholders within the family (e.g., child using AAC technology, fathers, siblings, extended family) and individuals who are interacting regularly with the child who uses AAC (e.g., home care aides, SLPs, teachers, paraprofessionals) to provide an in-depth perspective on how AAC is used within functional contexts and with various partners in the child's everyday life. A descriptive, in-depth case study that includes input from the various stakeholders and triangulation from multiple data sources could provide a rich and unique perspective on the barriers and facilitators for integrating AAC technologies into life. Longitudinal research is also critical to capture how experiences with AAC technologies change over time and to begin to understand the mediating factors that influence families' perceptions and integration of AAC into everyday life (e.g., amount of parent training, intervention history).

Future research should also seek to gain an understanding of the perspectives and experiences of a larger group of families and other important stakeholders. Research should include individuals with various disorders who use AAC technologies (e.g., autism spectrum disorders, Down syndrome, childhood apraxia of speech, acquired disorders) of various ages. The unique experiences of children with various diagnoses (e.g., behavioral issues in autism, vision issues in Down syndrome) will likely result in different experiences for families than those described by the parents of children with CP in this study. Additionally, priorities and experiences will likely differ for very young children who are just beginning to use AAC technologies, as well as for older adolescents and young adults. Future research is necessary to investigate how priorities, preferences, and experiences vary by etiology and time spent using AAC. Given the increasing diversity of contemporary families, it is also critical to seek input from families of children from various cultural and linguistic backgrounds. Experiences may differ for diverse families who may not have the same knowledge, time, and/or access to online resources as the parents in this study did.

Future research should also use systematic methods to evaluate the experiences of a larger group of stakeholders. The features of AAC technologies identified by parents in this study as important (e.g., physical design features, efficiency of use) could be used to inform and gain information from a larger group of parents, family members, and other stakeholders. Future intervention research should evaluate the effects of providing families with the supports parents identified and look at the resulting changes for both children and families.

Conclusion

This study reported the perspectives of nine parents of children with CP regarding how AAC technologies supported their child's participation in everyday life. Parents reported that children were able to work toward developing communicative competence using their AAC technologies. Parents identified features of technologies that supported their child's participation, features that presented barriers to participation, and features of ideal technologies. Overall, parents' perspectives revealed that there is still “work to be done” (Jacob) to improve the design of technologies and to enhance professional practice. Ultimately, future research and technology development should involve a multidisciplinary effort that includes children who use AAC and their families to ensure that AAC technologies can truly be integrated into everyday life so that, as one parent said, “hopefully in the future we [are] able to achieve much more” (Shannon).

Author Notes