Communication and Social Interaction Experiences of Youths With Congenital Motor Speech Disorders

Abstract

Purpose:

The purpose of this study was to explore the communication and social interaction experiences of adolescents with congenital motor speech disorders due to cerebral palsy or Down syndrome, with the aim of identifying clinical and research needs to support the development and implementation of speech-language interventions.

Method:

Five male youths (ages 14–18 years) with congenital motor speech disorders and one of their parents participated in face-to-face, semistructured interviews designed to understand communication and social experiences in daily life. Interviews were audio-recorded and orthographically transcribed offline. Content was coded according to topic areas emerging in the data. Themes were developed to illustrate the most salient and representative aspects of participants' experiences according to the phenomenological tradition that recognizes that participants are experts in their “lived experience.”

Results:

Participants described the youths' day-to-day communication experiences, including facilitators and barriers to successful social interactions. Thematic analysis revealed three main themes: (a) strong core relationships amidst sparse, superficial interactions in daily life; (b) the complicated picture of why; and (c) how speech-language pathologists can help.

Conclusions:

Participants reported that the impact of congenital motor speech disorders on social interactions and experiences became more apparent in adolescence than in earlier childhood. Addressing communication challenges to meet the unique social demands of this period requires tailored interventions that target multiple contributing factors beyond speech impairment, such as social communication skills, negative communication partner attitudes, and participation opportunities. Shifting practice toward a life participation approach to communication intervention stands to substantially improve the long-term social outcomes of adolescents with motor speech disorders.

Social participation with strong connections across a wide network is critical to positive developmental, health, and quality-of-life outcomes (Davis et al., 2009; Hämmig, 2019; Umberson & Montez, 2010). For instance, healthy peer relationships throughout development are related to increased self-esteem and protection against life stressors and challenges (Batten et al., 2014). In contrast, both perceived and actual social isolation can lead to depression and anxiety and are related to poor health outcomes (Hall-Lande et al., 2007; Pössel et al., 2018).

Social interactions and connectedness are particularly critical during adolescence, a developmental period when peer relations and social success assume a more significant role than other life stages (Jose et al., 2012; Whitmire, 2000). Close and meaningful connections during adolescence are strongly associated with both psychological health and emotional well-being (Hall-Lande et al., 2007). At the same time, the social landscape becomes increasingly challenging to navigate during adolescence, a period characterized by changes to social identity, complicated social dynamics, and increased opportunities to engage with a broader group of people across a wider range of contexts (Tanti et al., 2011; Turkstra et al., 2003; Whitmire, 2000).

Although social experiences are complex and multidetermined, they are mediated by communicative interactions. Therefore, individuals with communication disabilities are at a greater risk for social challenges. Children and youths with a range of speech, language, and hearing disorders experience negative social consequences (Batten et al., 2014; Durkin & Conti-Ramsden, 2007; McCormack et al., 2009; Rusiewicz et al., 2018). For instance, Durkin and Conti-Ramsden (2007) found that 16-year-olds with language disorders experienced poorer-quality friendships than their typical peers. A recent qualitative study of six adolescents (aged 11–18 years) found that communication difficulties after acquired brain injury affected identity, learning, relationships, and confidence (Buckeridge et al., 2020).

Adolescents With Congenital Motor Speech Disorders

Motor speech disorders in adolescence include dysarthrias (neuromotor disorders of speech execution) and (childhood) apraxia of speech (a neuromotor deficit in speech planning/programming; Duffy, 2013). Although motor speech disorders may be acquired during childhood or adolescence, they are commonly the result of congenital disorders such as cerebral palsy (CP) and Down syndrome (DS).

CP

CP is the most common cause of significant motor disorders throughout childhood (Lepage et al., 1998) and can result in differences across multiple domains including motor, sensation, perception, behavior, cognition, and communication (Rosenbaum et al., 2007). Communication disorders are common in children with CP, resulting from language, cognitive, and/or speech impairments (Hustad et al., 2010; Mei et al., 2020; Pennington, 2008; Soriano & Hustad, 2021). The majority of children with CP present with dysarthria (Nordberg et al., 2013). Dysarthria associated with CP is often characterized by imprecise consonants and vowels, voice and resonance disturbances, and atypical prosody (Allison & Hustad, 2018; Connaghan & Patel, 2017; Nip & Garellek, 2021; Patel et al., 2014; Schölderle et al., 2016). Other motor differences, such as limb paresis and postural challenges, may further interfere with nonverbal communication by individuals with CP (Pennington, 2008).

DS

DS is one of the most common genetic disorders in the United States with an estimated birth prevalence of 14 per 10,000 live births (Presson et al., 2013). Caused by an extra chromosome (Trisomy 21), DS can present with myriad health, sensory, cognitive, behavioral, and motor differences (Hendrix et al., 2020). Communication challenges can result from disruption across a number of domains, including cognition, language, hearing, and speech production (Hendrix et al., 2020; Kent & Vorperian, 2013; Kent et al., 2021; Wilson et al., 2019b). Structural and phonological differences contribute to speech production challenges in DS, but a growing literature also highlights the presence of motor speech disorders in DS, including dysarthria and, less frequently, childhood apraxia of speech (Kent & Vorperian, 2013; Kent et al., 2021; Rupela et al., 2016; Wilson et al., 2019a, 2019b). The dysarthria associated with DS is characterized by imprecise articulation, atypical resonance and prosody, and voice quality disturbances (Corrales-Astorgano et al., 2018; Kent & Vorperian, 2013; Kent et al., 2021). Although speech intelligibility has long been recognized as a challenge for many individuals with DS, intervention to facilitate speech production has been neglected due to long-standing assumptions about treatment efficacy for individuals with intellectual disabilities (Rvachew & Folden, 2018).

Social Challenges for Youths With CP and DS

Children and youths with a range of disabling health conditions experience social challenges, including limitations to their involvement in situations and events occurring within a social context (i.e., social participation; Bedell et al., 2005). For instance, some children and youths with disabilities experience reduced socialization with peers and poor social success relative to their typically developing peers (Bedell et al., 2013; Maxey & Beckert, 2017; Stewart et al., 2012). Children and youths with CP report limitations to their social functioning and their social participation (Donkervoort et al., 2007; Livingston et al., 2011; McFadd & Hustad, 2013; Stewart et al., 2012), thus restricting their access to social support and peer relationships, key factors in the quality of life of adolescents with CP (Davis et al., 2009). A review of qualitative reports found that adolescents with CP reported experiencing social isolation and exclusion by their peers (Lindsay, 2016). Communication challenges in particular have been associated with social participation restrictions in children and youths with CP (Kang et al., 2010; Tan et al., 2016; Voorman et al., 2010).

Individuals with DS also experience participation and social interaction restrictions throughout development (Van Gameren-Oosterom et al., 2013; Wuang & Su, 2012). Despite the widely held notion that individuals with DS are sociable and have good “people” skills, research indicates differences in social cognition (see Cebula et al., 2010, for a discussion; Iarocci et al., 2008) and social communication (Smith et al., 2017). Similar to individuals with CP, communication challenges have been reported to interfere with social success in DS (Cuckle & Wilson, 2002; Dolva et al., 2019; Naess et al., 2017). For instance, Naess et al. (2017) found that reduced vocabulary was more predictive of social problems of young children with DS than of typically developing peers. A qualitative study by Dolva et al. (2019) reported that the amount of engagement in social participation opportunities (e.g., visiting friends) was positively related to communication ability for adolescents with DS.

Using a Biopsychosocial Lens to Understand Social Experiences

Although restrictions to the social experiences of adolescents with CP and DS have been documented, a number of open questions remain that hinder the development and implementation of interventions to support successful communication for social purposes. Among these questions are how youth with congenital motor speech disorders experience social interactions and the factors that, in their views, impact their social experiences. Social participation has been recognized to be a complex construct impacted by a range of variables including illness or injuries that impact function, the social environment, and personal preferences, among other factors (Bedell et al., 2013; Maxey & Beckert, 2017; Stewart et al., 2012). These complex relationships are depicted in biopsychosocial models of health such as the World Health Organization's (WHO's) International Classification of Functioning, Disability and Health (ICF; WHO, 2001) and International Classification of Functioning, Disability and Health–Child & Youth Version (ICF-CY; WHO, 2007). A growing literature has described communicative participation restrictions in the context of the ICF from the perspectives of adults with dysarthria due to neuromotor disease, with these participation restrictions associated with physical impairments, environmental barriers, and coping challenges (e.g., Baylor et al., 2011; Yorkston et al., 2014). The social impacts of motor speech disorders from the perspective of adolescents during this unique developmental period are less understood. Moreover, adolescents with congenital motor speech disorders likely experience different social communication challenges than those with acquired motor speech disorders who have a history of typical development. Therefore, providing interventions that target improved social communication experiences for adolescents with congenital motor speech disorders requires a specific understanding of their experiences as opposed to extrapolating from the experiences of either adults or young children. The current study was designed to inform our understanding of the communication and social interaction experiences of adolescents with congenital motor speech disorders using a qualitative phenomenological research approach.

Method

A qualitative research approach is optimal to address the goals of this study, given that this methodology can provide an in-depth look and comprehensive understanding of an event or phenomena, and is well suited for studying social experiences (Simmons-Mackie & Lynch, 2013; Wilson & Kim, 2021). Qualitative research has been increasingly employed in health care research and can serve multiple purposes, including providing an opportunity for key stakeholders (e.g., patients) to inform practices and to generate testable research hypotheses. With its roots in philosophy, the phenomenological tradition recognizes that participants are the experts in their own “lived experience” and is therefore the appropriate qualitative research approach for understanding social experiences (Wilson & Kim, 2021). Through semistructured interviews, we aimed to explore the meaning of communication and social interaction experiences from the participants' perspectives, as well as the facilitators, barriers, and strategies that support successful interactions of adolescents with congenital motor speech disorders. We further anticipated that these interviews would reveal gaps in practice to guide both future research and clinical efforts targeting improved communicative and social success.

All procedures were approved by the human subjects protection institutional review board at Northeastern University. The Consolidated Criteria for Reporting Qualitative Research Checklist (Tong et al., 2007) was used to guide our reporting of the study methods, analysis, and findings and their interpretation.

Participants

We included participants with congenital motor speech disorders stemming from two diagnoses, CP and DS, both of which are commonly seen on a school speech-language pathologist's (SLP's) caseload. Youths with one of these diagnoses and presenting with a motor speech disorder were invited to participate, along with one of their parents. Although we aimed to understand the youth's experience, parents were included in this initial study to provide a broad view of experiences and to facilitate the sharing of information that may be challenging for participants with more severe communication impairment to convey. Participants were recruited from a lab database of families who had previously expressed interest in being contacted for research opportunities, from local listserv and newsletter advertising, and from clinical partners. For youth participants, inclusionary criteria included the diagnosis of a congenital disorder (e.g., CP, DS) and a history of motor speech disorder (i.e., parent report of a previous diagnosis of dysarthria or childhood apraxia of speech). Youth participants were also required to use spoken communication as their primary mode of communication, speak English as their primary language, and have sufficiently corrected vision and hearing to complete the research tasks. Participants with reported social communication differences secondary to autism spectrum disorder were excluded from the study. Parents who spoke English as their primary language, lived with the youth, and did not report problems (e.g., communication, cognition) that would interfere with their ability to participate were included in the study. Youth participants provided their assent to participate in the study. Parent participants provided consent for their own and their child's participation.

The convenience sample included five male adolescents (age range: 14–18 years) with a motor speech disorder secondary to CP (n = 3) or DS (n = 2) and one parent/caregiver from each adolescent participant's family (n = 5). Parent participants (ages 44–59 years) included four mothers and one father.

Procedure

Data collection included (a) the administration of clinical assessments to provide descriptive information about the participants and (b) the conduction of semistructured interviews designed to explore the youth's social and communicative experiences. For the five youth–parent dyads, these activities were conducted in a quiet room at a location convenient to the participants, including the participants' home (n = 3), a private meeting room in a public library (n = 1), and a room at the first author's university lab (n = 1). For each session, the interviews were conducted first, followed by clinical assessments. For the parent report instruments, participants were provided with a stamped envelope to mail to the researcher if they wished to complete the assessments at a later time.

Descriptive Data

A battery of communication, participation, and motor assessments was conducted to provide a clinical description of the participants. Communication function was described using (a) the Children's Communication Checklist-2 (Bishop, 2006), a parent/caregiver report screening of speech, language, and pragmatic skills, and (b) the Peabody Picture Vocabulary Test–Fourth Edition (Dunn & Dunn, 2007), an assessment of receptive language. To describe participation, parents completed the Child and Adolescent Scale of Participation (Bedell, 2011), a caregiver report of their child's participation across home, school, and the community. The adolescent's gross motor function was characterized by the Gross Motor Function Classification System (Palisano et al., 1997) rating.

Although all parents reported that their child had been previously diagnosed with a motor speech disorder, the presence of a motor speech disorder was confirmed by the first author, a certified SLP, using conventional procedures. These procedures included structural–functional and motor speech exams (adapted from Duffy, 2013, and Strand & McCauley, 1999) comprising the production of sounds, words, sentences, and connected speech. All participants demonstrated at least mild dysarthric features based on these exams. In addition, three researchers (SLPs; authors K. P. C., M. R., and J. R.) rated the severity of each participant's motor speech disorder on a scale of 0–4 (0 = no impairment, 1 = mild, 2 = moderate, 3 = marked, 4 = severe; Duffy, 2013) based on a set of standard sentences that had been recorded during the motor speech examination. Ratings of severity in adults with dysarthria have been shown to be highly associated with speaker intelligibility (Stipancic et al., 2021). Table 1 shows descriptive information for the adolescent participants, including the severity, as determined by agreement of two of the three raters, with no more than a 1-point rating difference between all three listeners.

Table 1.

Description of participants including age, diagnosis, communication, participation, motor, and motor speech impairment rating.

Youth ID	Age (years;months)	Dx	CCC-GCC (percentile)	PPVT-4 standard score	CASP summary score	GMFCS	MSI severity
AD1	14;3	DS	2	n/a	61.3	I	Mild
AD2	16;7	DS	< 1	34	63.3	I	Marked
AC1	14;11	CP	23	103	72.5	V	Severe
AC2	17;8	CP	3	40	58.8	V	Moderate
AC3	17;11	CP	58	92	82.5	II	Mild

Note. Dx = diagnosis; CCC-GCC = Children's Communication Checklist-2 General Communication Composite percentile rank; PPVT-4 = Peabody Picture Vocabulary Test–Fourth Edition; CASP = Child and Adolescent Scale of Participation (summary score; a score of 82.5 indicates no reported participation restrictions); GMFCS = Gross Motor Function Classification Scale (rating of I = no motor limitations to V = significant motor limitations); MSI severity = rating of motor speech impairment; DS = Down syndrome; CP = cerebral palsy; n/a = not applicable.

Interviews

Separate interview guides were developed for the adolescent and parent participants. The first author (K. P. C.), with input from coauthors (C. B. and G. B.), developed an initial draft of questions. Using the ICF-CY as a conceptual framework, these questions were designed to address the study aim of understanding the communication and social experiences of adolescents with motor speech disorders. Specifically, the questions focused on understanding how motor speech disorders, as well as other biopsychosocial factors, may independently and interactively play a role in these experiences.

The guides were iteratively developed, with drafts of the adolescent interview questions field tested by two consultants to the project: a 22-year-old man with dysarthria secondary to CP and a typically developing 14-year-old male adolescent. This feedback, as well as input from members of the research team, was incorporated in the development of the final interview guides.

All interviews were conducted by the first author, a certified SLP and experienced researcher of communication of individuals with CP and DS. Participants were invited to describe their/their child's experiences living with motor speech disorder and interacting with various communication partners across social settings. The interviews started with an explanation of the purpose of the interviews and a grand tour question inviting them to share about their/their child's experiences communicating in life activities (e.g., “Tell me about your/your child's communication in day-to-day life. How is it going?”). Other questions focused on participation and social interaction opportunities and experiences (e.g., “What kinds of things do you/your child do with friends or family for fun?”) and communication and interaction experiences across partners and settings, such as with friends and family (e.g., “How does communication go in those situations [with family/friends]?”, “Tell me more about what makes you good friends”) and at school (e.g., “Tell me about talking at school”). Participants were further asked about the role of contextual (environmental, personal) factors on communication and social interactions as well as strategies to support communication, social interactions, and social participation (e.g., “What makes it easier/harder to talk with people? Are there things you do [strategies] to make it easier?”).

Youth and parent participants were given the opportunity to be interviewed together or individually. All youth participants opted to have a parent present for their interview, and these interviews were conducted first. For some of these interviews, the parent's involvement was limited to probing the child to elaborate their answers and/or clarifying their child's response. For others, the stories and information shared were co-constructed between the parent and youth. Therefore, parents not only assisted with ensuring that the interviewer understood the youth due to reduced speech intelligibility but also contributed to the information by suggesting points the youth might want to say and sharing their own views on the experiences. Parent interviews were conducted upon completion of the youth's interview and modified depending on information already shared. Two parent participants opted to conduct this interview without their child present. Whereas the interviews ranged in length from 20 to 55 min, responses from the adolescent participants were generally shorter and fewer than from the parent participants.

Data Analysis

The interviews were transcribed verbatim from the audio recordings. Transcriptions from 20% of the interviews were checked by a second member of the research team to ensure reliability. Because most interviews were conducted with the youth and parent together, the transcripts were analyzed with the data regarded as jointly constructed accounts of experiences. Therefore, although quotes are identified as coming from either a youth or a parent participant, the comments from youth and parents were not systematically analyzed separately.

Analysis began with deep reading of the transcripts and development of a code dictionary to enable identifying and sorting similar topic areas throughout the interviews. The code dictionary was developed collaboratively and iteratively by members of the research team. Codes were not established beforehand but emerged from the data. First, the researchers read one interview independently and identified potential codes based on topics or experiences discussed by participants. They then met to compare their findings and develop an initial set of codes (e.g., “friends,” “strategies”) and definitions of those codes. An iterative process of independently coding additional interviews and then meeting to compare coding samples and to establish reliable code definitions was conducted until the researchers were in agreement regarding the code dictionary.

One member of the research team then uploaded all of the transcripts into Dedoose.com, a text and coding management software program (Version 8.0.35), and coded all interviews. A second member of the team coded two (20%) of the interviews, and codes were compared for consistency. The minor discrepancies were discussed between the researchers and resolved to ensure all content was coded reliably. The transcripts were then sorted into excerpts according to the coded topic areas. Again, working collaboratively and iteratively, the research team summarized the most common and salient experiences described by participants in each of the coded topic areas. Next, they examined these experiences across the coded topic areas to generate a parsimonious set of themes that captured the overarching commonalities described by participants, as well as subthemes that provided further detail about these experiences. This analysis also considered variations among participants to ensure that divergent experiences among participants were represented. Quotes were selected that illustrated concepts conveyed in the themes.

Trustworthiness of the data was established through standard qualitative procedures of demonstrating credibility, confirmability, and transferability (Lincoln & Guba, 1985) and followed the procedures described by Burns et al. (2015). Briefly, credibility and confirmability were established by triangulation of the data (e.g., evaluating responses within and across interviews, and between parent and youth participants) and through member checking. Member checking, which demonstrates the authenticity of the research findings and the extent to which data reflect the perspectives of participants versus those of the researchers, was conducted in two ways. First, the interviewer checked in with participants during the interview by summarizing what she heard from participants and asking for confirmation of the veracity of this summary. Second, after the completion of the thematic analysis from coded data, the researcher provided parent participants with an e-mailed summary of the results for their/their child's review. The participants were asked to provide feedback about the accuracy of the summary by e-mail, by phone, or over Zoom, which informed the final thematic analysis. Parents were asked to respond on behalf of themselves and the youths. Four parent participants responded and indicated that the summary accurately portrayed their child's experiences. One participant wished to elaborate on her responses, which she provided over e-mail. Third, the researcher took field notes (key points, impressions) during and immediately after the session.

Transferability refers to the degree to which the findings may apply to the experience of similar individuals (Burns et al., 2015). Although the small sample size consisting only of males limited the generalization of the findings, the range of disability and speech impairment factors of the participants increased the likelihood that the findings are applicable to other youths with motor speech disorders.

In addition, the makeup of the research team likely enhanced the transferability of the findings. Two members of the research team (C. B. and G. B.), highly experienced in qualitative research (C. B. in adult speech-language pathology and G. B. in occupational therapy for youth with brain injury and other neurologic impairments), provided guidance for all stages of the research process to the first author (K. P. C.), an experienced quantitative researcher in motor speech disorders. The diverse disciplinary backgrounds and experience with various populations of the research team enabled the team members to challenge one another on emerging codes and themes.

Findings

Three main themes and nine subthemes emerged from the data, as shown in Table 2. The first theme was strong core relationships amidst sparse, superficial interactions in daily life. The second theme, the complicated picture of why, emerged from participants' descriptions of multiple factors contributing to their successful as well as restricted communicative participation and social interactions. The third theme, how speech-language pathologists can help, reflected the various strategies that participants implement to support communicative and social interactions. The third theme further reflected the resources and interventions that parents are asking for.

Table 2.

Major themes and subthemes.

Theme	Subtheme
1. Strong core relationships amidst sparse, superficial interactions in daily life	1.1  Close friends and family at the core
	1.2  “I only have two [friends] in school”
2. The complicated picture of why	2.1  Communication is one factor
	2.2  “On my [school] bus, I'm the only kid.”
	2.3  Communication partner attitudes: “Our society equates the ability to speak with intelligence and worth.”
	2.4  Adolescence is a time of transitions: “They're all so worried about fitting in.”
3. How speech-language pathologists can help	3.1  Strong social relationships: “It's easy because I'm used to them”
	3.2  What youths/parents already do
	3.3  What are parents asking for?

Theme 1: Strong Core Relationships Amidst Sparse, Superficial Interactions in Daily Life

Participant descriptions of communication and social interactions revealed strong social connections within a relatively small network of long-standing friends and with family. However, descriptions of the day-to-day interactions beyond this close network, such as with peers and teachers, and within the context of extracurricular activities, generally suggested sparse and superficial associations.

Subtheme 1.1: Close Friends and Family at the Core

Multiple participants highlighted that family and friends are the primary communication partners, “My family—I talk to them a lot because I been with them all of my life, so I can” (AD1). ¹ PC2 described his son's communication behavior as follows: “When he's with me, he doesn't shut up. He'll say the same things over and over, with me only.” The friends who were close communication partners typically represented long-standing friendships that were developed early in childhood or elementary school: “Me and [Friend] have a very close friendship bond because we met when we were young” (AD1). When referring to a good friend, AC3 stated, “I've known him for almost 7 or 8 years now, since the 3rd grade.”

Subtheme 1.2: “I Only Have Two [Friends] in School”

Beyond their core network, participants described more sparse and superficial interactions. One parent stated, “He's like the mayor. Everybody knows him. He knows a lot of people. He has surface relationships” (PD1). Her son confirmed the limited depth of his interactions, “I don't go deeper into personal stuff” (AD1).

In particular, school was described as a setting where the youth reported having either close friendships but very few of them or, more commonly, frequent superficial encounters. On one hand, school was where teens reported spending time with their friends. AC2 reported that he greets people at school, “I say hello [to] my friends.” His father confirmed his son's friendliness but indicated that he perceived that his son experienced a lack of deeper friendships, “He's a very likeable kid, but unfortunately there's not a lot of friendships due to the situation [cerebral palsy]” (PC2). AC1 described similar experiences, “I only have two [friends] in school.” His mother (PC1) expanded further,

The people that walk by in the hallway, some will just look at you and say “hi.” Other people are just afraid and never look at you and never talk to you. And then there are a few people, a dozen people—who you actually talk to.

Whereas AD1 reported, “I have a lot of great friends,” his mother (PD1) stated, “I know he said ‘I have friends at school.’ He wants to, but it's really not the case,” highlighting a contradictory perspective that can occur between the youth's experience and the parent's observations.

Theme 2: The Complicated Picture of Why

Participants described a wide range of factors contributing to the success of social interactions and participation. Although motor speech performance was a contributing factor, other key, and perhaps more dominant, issues included overall communication skills and impairments in other domains. These factors interacted with elements in both the physical and social environment (communication partner attitudes). Finally, adolescence was simply reported by participants to be a challenging time.

Subtheme 2.1: Communication Is One Factor

Evidence that speech impairment factored in to social success was highlighted by AC1, the participant with the most severely impaired speech production, who attributed his good relationship with his closest friends to their ability to understand his speech despite his dysarthria, “I have two best friends. We have very good communication. They understand me.” His mom provided an example of how dysarthria limits her son's speech output, which in turn interferes with pragmatic aspects of communication with peers outside of his close social circle. She described how intelligibility can be a factor in initiating social interactions, “What if [communication partners] don't understand when you're saying, ‘How are you?’” (PC1). She further explained how his limited speech output restricts his ability to maintain social interactions, “You (AC1) answer in one or two words, and you don't ask questions about what [friend's] doing or how he's doing it” (PC1).

The motor speech disorder was not the only impairment impacting social interactions. AC3, a teen with only mildly impaired speech, described how slowed processing affects his interactions, “It's hard sometimes to get the thoughts out clearly. I'm thinking of what I'm going to say.” PD1 similarly described how their child's interactions were impacted by more than motor speech challenges, “The two parts of the speech—there's the physical, obviously the annunciation, and that's hard. But the cognitive piece is also challenging. Being able to volley conversation and understanding what's appropriate…like not standing too close to somebody.”

Other parents also raised concerns about social communication awareness as well as their son's motivation to interact. For instance, PC1 stated,

I think that [AC1] doesn't often understand what he projects to people. Communication for me is such a two-way street. Looking directly in someone's eyes all the time or responding to them [by] your face shows something. I don't think [AC1] gets that.

PC2 described what he perceived to be his son's ambivalence to engage in social interactions, “He's antisocial. People say hi to him and he [just] looks at them. Even people he knows from high school. He knows people go out of their way to communicate with him. It's just not the other way around.”

Subtheme 2.2: “On My [School] Bus, I'm the Only Kid”

A number of participants explained how the physical/sensory environment interacted with their impairments to pose barriers to social interaction. AC1 reported that “really, really loud places” are difficult environments for interacting with people. His mother explained her son's dysarthria makes it “hard to project and communicate that way” (PC1). Crowded environments were also challenging for some participants. PC3 described restrictions to her son's participation in crowded activities given his need for vigilance for his physical safety due to a history of epilepsy and brain surgery, “He's a little bit more intimidated in crowds, but I think it's more of a visual–spatial thing more than a speech thing. And more that ‘is someone is going to bump into me? Am I going to see them?’ Its more physical safety.” Her son also described challenges with attention when communicating in a large or crowded group as “trying to follow each person that's talking” (AC3). AC1 reported that using a wheel chair in a crowded space affected opportunities for interactions because “I don't move.” His mother expanded further, “Getting around in a room is very hard. I do think you avoid those situations…Even going through the hallways at school, I don't think you speak much” (PC1).

Participants also described how their school environment limited opportunities for social interaction because they were not around many other students. AC1 described his school bus ride, “On my bus, I'm the only kid.” AC3 reported, “Most of the classes are small. Sometimes [with] 2 to 3 adults.” Lunchtime, typically a key opportunity to interact with a variety of peers in a more relaxed and less-structured environment, was often modified either in location or by having adults present. AC2 reported eating lunch “in the cafeteria [with] my one-to-one,” whereas AC3 said that he “eats in the classroom with a couple classmates and the teacher's always there.”

On the other hand, positive experiences with teachers and staff often developed and supported broader participation. AC1 reported, “[The teachers] understand me.” One parent relayed how a staff member facilitated her son's interactions with peers in class, “He had an aide who understood his communication style well and she was good at facilitating with the small groups for demonstrating how to interact with [AD2] in a way that was meaningful and not babying” (PD2). However, parents also expressed disappointment in missed opportunities for teachers/staff to support their sons' communication. For example, PD2 said “his older teachers will sort of try once and then just give up trying to understand.” PC1 responded to AC1's earlier statement that his teachers understand him by adding, “How long do you think it took them to understand you? A couple months?”

Participants reported problems with accessibility of extracurricular activities for youths with disabilities leading to restricted opportunities for social interactions and participation. PD2 described her son's negative experience with an adaptive extracurricular opportunity that included typically developing teen boys:

We did a [softball] team once and we had 13- to 18-year-olds. Half of them, it was their first time ever playing. It was a disaster because the partners, who were like your typical athletes, were being nasty. They're just whipping the ball.

AC1 described participating in school and social activities, “I don't go to [school] dances unless you [PC1] make me. Because I have no one to go with and I don't like dancing.” His mother concurred and added, “Yes, you don't participate in a lot of social activities unless it's like a family activity usually” [PC1]. PC3 explained that her son is restricted in participating in activities for safety reasons because of his epilepsy, which is commonly associated with CP:

Regular sports, he can't participate in. So we looked for an alternative adaptive type activities that he can participate the way he wants. We have to come up with a plan [for school activities] because there has to be a nurse facilitator there.

Subtheme 2.3: Communication Partner Attitudes—“Our Society Equates the Ability to Speak With Intelligence and Worth” (PD2)

Participants reported that success in interactions was also affected by the social environment, including communication partners' attitudes and efforts. Most participants reported feeling underestimated or patronized by some communication partners and that these partners may interact superficially or with limited effort. PC1 contrasted her son's interactions with the morning versus afternoon bus staff based on their attitudes, “[In the morning] they have a hard time understanding him. The afternoon people have already figured him out. They keep asking questions—they presume he has intelligence.” PD2 described the attitude of her son's teacher as, “She presumes that he just doesn't know what he's talking about…. She's just dismissed him because she just doesn't understand people with Down syndrome and how they speak.” PD2 further summarized her perspective regarding how people with speech disorders were viewed in the education system as, “If you can't talk, that means you can't think—that's the pedagogy for schools forever.”

A son and mother described their experience with an impatient worker at a company related to disability supports. AC3 stated, “That lady did not let me have time processing the question and trying to give her the answer.” His mother added, “And she said something like, ‘I'm not asking you complicated questions.’ It was horrible! She asked him a complex question and she was like ‘I'm not asking you an Einstein question’” (PC3).

Not all communication experiences were negative. PC2 did not feel that his son was negatively influenced by communication partner attitudes, “It's more common place now, the disability thing. And usually most of the experiences we have are good everywhere.” PC1 also provided an example of the positive attitudes of AC1's good friends, “They treat him pretty normal. They've got how smart he is and they didn't let this stuff get in their way.”

One of the challenges seemed to be navigating the wide range of attitudes from peers, somewhat like navigating safe traverse across a minefield. AC1 reported that the kids at school “are either friends with me, or [they] know me, or they are afraid of me.” His mother clarified that the friends' knowledge of people with disabilities is likely part of the issue: “You perceive it as them being afraid of you. I think it's a little bit that they're afraid, [but it's mostly that] they don't know what to do” (PC1). Another situation described by PC1 was when peers pretend to be her son's friend,

You look good, you get this good will if you say you're BFF's with a kid in a wheelchair. “Poor little disabled boy.” It's a fine line between people are just trying to be his friend because it looks good on paper or it feels good to them, makes them feel good.

A number of participants described how negative attitudes and reactions from other people led to the youths to just stop trying to engage with those individuals. PD2 said, “Yeah, he reads people like that. [This teacher] will sort of try once and then just give up trying to understand. So he (AD2) doesn't even bother trying to talk to her anymore.” Her son's behavior is different when a partner appears willing to engage, “When it breaks down, and it's somebody that he's used to communicating with and it's obvious that they want to talk to him and willing to invest a little of their time, then he will.” PC1 described how her son had been patronized and underestimated: “‘Hey buddy, hey buddy!’ People say that a lot. That's how they talk to him. Like [they think] that's [his] level of communication.” AC1 described how he responds in those situations, “I just ignore them. I ignore people who are like ‘Hey Buddy.’” AC1 also reported that he can tell when someone is not genuinely engaged, “If they're going ‘uh-huh’ [it means they don't understand]” and that his response was to “give up. If you don't want to hear me—‘bye.’” PD1 described explicitly teaching her son to identify when a potential communication partner does not wish to engage.

We're working a lot on reading social cues. One of the things that's been a little hard is understanding when somebody doesn't really want to be a friend…So a cue is if you're trying to talk, they turn away they walk away, they look more interested in talking to someone else, then we go “oh, that's a cue.”

Subtheme 2.4: Adolescence Is a Time of Transitions—“They're All So Worried About Fitting In”

Adolescent transitions include changes to new schools (e.g., moving from elementary to middle to high school). Although switching schools can lead to new friendships and broaden social opportunities, it is also associated with less contact with old friends. AC1 described the narrower scope of friendships at his new school, “I only have two [friends] in school. Because I just got into high school.” AD2 provided a list of friends no longer in his class. His mother further explained, “They were all together in middle school and then went to different high schools. So, now he doesn't really know a lot of the kids…. I think it makes him sad that he doesn't have his friends at school” (PD2).

Participants also discussed how peer dynamics related to self- and group-identity change with adolescence. Adolescents struggle with fitting in (Maxey & Beckert, 2017), and this may affect their willingness to interact with someone who is different. PD1 reported that long-standing friendships did not always withstand the pressure to fit in: “Right now with middle school, they're just so into themselves. So some of his friends who were at [elementary school], who were friendly with him, now they just think he's weird.” PC1 described an experience meeting up with her son's old friend:

There's a kid in high school who he was best friends with in grammar school. But now, we met him again and [Friend] was awkward. We were ready to jump right into being BFFs, but [Friend] has changed and wasn't ready to jump into being friends again like they were before.

Other parents summed up the effect of adolescent dynamics on their child's social experiences: “High school is a time of growing apart anyways,” and “Because differences stand out, and it really depends on what kind of a person you are” (PD2). PD1 looked forward with hope that the social dynamics that made fitting in difficult in adolescence would ease as her son and his peers get older.

At this age, it's particularly hard, because all the boys that are 12-, 13-, 14-, they're all so self-centered and so worried about fitting in themselves. They don't have the ability to connect with him unless their family is hyper-focused on it because they have another child with special needs or unless the child is very mature…. He tends to connect better with 17-, 18-, 19-year-olds. He gets along better with adults. I would say it's going to better in the future, because the peers will be more mature. Then they'll see and understand. Right now, they just think he's weird.

Theme 3: How SLPs Can Help

Throughout the interviews, participants described strategies that they employ to support successful communication and social interactions and thereby social participation. Parent participants further shared the types of opportunities and services that they wished were available.

Subtheme 3.1: Strong Social Relationships—“It's Easy Because I'm Used to Them”

Communication partner familiarity often characterized the strongest and most frequent interactions, highlighting the importance of opportunities for youth to be able to interact with other people often enough to build familiarity. Familiarity promoted understanding the youths' speech: “People [AD1]'s known for a long time, they kind of know how [he] is and they understand his speech patterns” (PD1). PD2 described similar experiences, “By December, [the other students] didn't need the translation—but when they're first meeting him [AD2], they needed the translation.” PD2 added that the benefit of familiarity could generalize across individuals, “The ones who understand him the first time, they have an uncle or a brother or somebody close to them in their life who had Down syndrome, so they have an ear. They've developed an ear for it.”

Beyond familiarity with speech, frequent communication partners also had shared knowledge and points of reference. As AC3 described, “It's very easy for me to talk to my parents, my grandparents, and my friends, aunts and uncles, cousins, teachers. It's easier because I know them very well and it helps me to have everything in common.” In contrast, it was harder for him to interact with peers who attend different schools, “It's hard [to make conversation with Friend] because he doesn't go to the same school.” PD1 reinforced the importance of a familiar topic to her son's communication success, “If it's a topic he knows, he's fine. If it's not, he doesn't really say much. Knowing ahead of time what the topic was going to be or who he's going to be with makes it more easy for him.”

Participants were also more comfortable with familiar communication partners: “A couple of [classmates] are good friends. It's comfortable. We talk. It's easy because I'm used to them” (AC3). PC2 described his son's communication with family members, “His brothers, people that he gets comfortable with. He has no problem. He talks and talks and talks and talks. He's a talk-a-holic.”

In addition, humor was reported to be an important component of peer relationships. AC2 stated that, “He's my best friend 'cause he's funny.” AC1 said, “I talk to my friends. We make jokes.” He described his best friends as people who “make the really bad things really funny.” Yet, his mother suggested that his dysarthria interfered with engaging in humor, “You [AC1] haven't bridged that gap of how to get to the part where he understands you have a sense of humor” (PC1).

Subtheme 3.2: What Youths/Parents Already Do

To optimize their chances at success in social interactions, some teen participants reported that they prepare in advance what to say to initiate or to maintain a conversation. AD1 described how he planned ahead: “When I talk with them [friends], I normally go to a person with my questions. I ask them things like ‘What do you want to do like for fun?’ ‘What kind of games do you play?’ That kind of stuff.” His mother added that this approach had been taught at school as, “We can remember things about people, and that's how we get friends—by showing that we're interested in what they like to do” (PD1).

The participants also recommended strategies for communication partners to use, which often centered around requesting clarification or allowing sufficient time for communication. AC1 recommended that partners “listen. And then say ‘try again.’” AD1 had a similar advice: “Ask me to say it again slowly, or ask me to say it loud. So they don't have to keep asking me again and again and again.” Parents highlighted the need for communication partners to be patient: “Letting him complete his thought, not interrupting or trying to finish what you think he wants to say. More time and patience” (PD1). “Understanding the impact or need for patience…This is a real challenge! Conversations with those who can use their voice without challenges often move too fast!” (PC1). PD2 recommended educating teachers to provide time to communicate with her son: “No one's ever modeled to them how to engage, how to stop and listen, how to slow down the pace, in the classroom especially, and give him opportunities to communicate his way.”

A strategy proposed by a subset of parents was to decrease their own involvement in their children's social interactions. They reported feeling conflicted between giving their children more autonomy versus allowing their youth to struggle with communication breakdowns that they knew were more likely to happen without their support: “Sometimes I hate to [speak for him] because I know he can [communicate] it for himself but I always like everybody to have a clear picture” (PC2). Similarly, PC1 said, “I overdo it. I over translate. I help him too much. My biggest worry about this is that he doesn't get that I do this [intervene] more often than he needs. I want everyone to know how smart and funny he is, so I help translate.”

Subtheme 3.3: What Are Parents Asking For?

Parent participants shared recommendations as to how SLPs could better facilitate adolescents' engagement in communicative and social interactions in an effort to support more and stronger relationships. The parents' most common recommendation was that SLP intervention should focus on the interactive nature of communication, rather than on the motor speech impairment, as children move into their teenage years.

As he's gotten older and become a teen, our area of focus has really changed to become more of the how do we help him develop friendships, which is such an issue for multiple reasons. Speech is one of them. In his last [SLP] evaluation, they said…that really his biggest challenge is not the actual speech itself. The most challenging, pressing concern for us right now is the social piece. (PD1)

PC1 also described how working on her son's nonverbal and social communication skills may be more impactful than focusing on speech production:

How do you help bridge the gaps to make it easier for people to understand you? We do that all the time, all of us do it nuances, with our smiles…For [speech-language] therapists in particular, I think it's really important for them to understand all of these components and to bring that, versus just the “if you sit up straight and you breathe.” [AC1] can't do that all the time.

PC1 continued on to state how her son would benefit from explicit social communication instruction, “I think he could get some more strategies to understand what he's doing [in a social interaction] and what he's not doing. How do you understand your role in communicating, that it's a two-way street?”

Parents had various ideas as to how intervention to support social interactions could be implemented. Most of the suggestions included integrating intervention into everyday, real-life activities such as in the classroom, in social interactions around school, and in other natural social situations: “Figure out how to incorporate real life activities into therapy—ordering pizza over the phone” (PC1). Another parent provided a specific example of using the context of everyday activities at school as the basis for therapy,

In terms of interventions, at this stage—the most important thing would be to have almost in-the-moment coaching. Instead of him doing lunch bunch [lunch in a separate classroom], why don't you just go into the cafeteria with him? So now, he [clinician] just observes him in the cafeteria. But stay with AD1 right after that, get pull out, then say, “I observed this.” “Did you mean to say this?” “How do you think he felt?” (PD1)

Another suggestion that parents had for improving SLP services was to include other young people to help promote social interactions. PC1 described how involvement of an admired peer may be beneficial, “Friend gave [AC1] a high five, and then every other member of the basketball team did the same. I think maybe it will change people's perception. You know, that whole coolness factor.” PD1 described the benefits of facilitated social events, particularly when led by someone that the kids admire, “It's our youth director. He's kind of cool and he's funny. And they do all these social activities. Those are the best situations for [AD1].”

Beyond SLP services, one parent (PC3) emphasized the need to support more opportunities in general for social interactions:

Get [the teens] involved in any extra-curricular stuff that gives them the opportunity for social and communication. Try the special-ed route first and once they are comfortable there, branch out a little bit and see if you can do some inclusion stuff. So there is more and more stuff out there to get these kids included socially.

Perhaps most importantly, PC1 highlighted the importance of tailoring therapy or any other opportunities to individual needs at this stage, recognizing that adolescents are developing their own unique identities and interests: “Understand each person is different and no one approach is the right answer for all.”

Discussion

Adolescence is characterized by transitions, physical and mental maturation, increased independence, and unique social demands, all of which present new communication challenges to developing youth. The types of situations in which youth find themselves for social interactions, as well as the types of conversations they want and need to have, are different from those of earlier childhood. For instance, adolescents typically have opportunities to participate in a greater variety of activities and experience greater independence from parents or other adults than younger children. On the other hand, adolescents are not yet engaging in the types of daily activities, responsibilities, and conversations that are typical of adults. Because of the unique nature of adolescence, approaches to SLP services developed for young children or for adults with motor speech disorders may not be optimal for teens. The purpose of this study was to explore the communication and social experiences of youth with motor speech disorders to better understand how SLPs might tailor their services for the specific needs of this important developmental stage.

All participants reported that the youths enjoyed close and meaningful relationships in which they perceived their communication to be comfortable and successful. These core relationships were primarily with family members and a few long-standing friends. This finding is consistent with previous work showing that adolescents with DS differed from their typical peers in their reports of their primary social interactions occurring with family members and long-standing friends (Cuckle & Wilson, 2002; Dolva et al., 2019). Relationships can be easier to develop earlier in childhood, when, compared to adolescence, parents have greater influence over peer interaction opportunities and friendships are based more on shared activities than intimacy (Webster & Carter, 2007). The reliance on these earlier-developed relationships highlights the risk that adolescents with motor speech disorders do not appear to be experiencing the same growth in the breadth and depth of social networks that many of their typically developing peers experience. Beyond the core group of family and a very few close friends, the participants in this study described a landscape of sparse and superficial interactions at best and negative interactions at worst.

Factors Affecting Opportunity for and Success of Social Interactions

In describing their daily experiences, participants discussed a variety of contributing factors consistent with biopsychosocial models of disablement such as the ICF-CY framework (WHO, 2007). Examples of contributing factors representing different components of the ICF-CY that were described by the participants are presented in the sections below.

Body Functions and Structures and Activity Levels

Several communication impairments made it difficult for the youth in this study to engage in social interactions. Although the focus of this study was on motor speech disorders, these were not the only communication impairments that participants experienced. Slower language processing and social communication impairments also created obstacles.

Motor speech impairment. Participants reported how motor speech impairments, resulting in limited speech output and reduced speech intelligibility, interfered with interacting with people beyond a superficial level. As some examples, efforts that the youth made to initiate conversations fell flat when their communication partners did not understand their overtures, and the effort of speaking truncated the amount of information that the youths provided in conversations. These problems with impaired communication skills could be somewhat mitigated by contextual factors. For example, people who were familiar with the youths were more successful communication partners, consistent with prior evidence that listener familiarization to dysarthric speech increases comprehensibility (Borrie et al., 2012). Familiarity was also reported to provide shared knowledge and points of reference, as well as engendering higher comfort levels, consistent with prior research showing that familiar communication partners promote better communicative participation (Baylor et al., 2011). These findings support efforts focused on cognitive–perceptual interventions and listener training approaches that target communication partners (Borrie & Lansford, 2021).

Social communication impairment. Some parent participants described concerns with their child's social communication skills and how these concerns became more prominent in adolescence. Some of the problems with social communication were tied to the motor speech impairments. For example, disorders of prosody (rate, rhythm, intonation) and limited speech output due to motor problems (e.g., reduced breath support) prevented the youth from being able to fully express themselves and to effectively use language in socially expected ways such as using humor. This influence of dysarthria on pragmatic behavior has been noted for other populations as well. For instance, Comrie et al. (2001) found that adult speakers with dysarthria contributed a lower percentage of conversational turns, produced shorter turns, and paused more before turns during conversation than nondysarthric speakers. Pennington and McConachie (2001) found that children ages 2–10 years with CP with speech impairment were restricted in their conversational exchanges with their mothers, including less conversational initiation and engagement in a smaller range of communication functions. Similarly, other motor limitations may restrict nonverbal social communication (Pennington, 2008), such as establishing eye contact and using manual gestures, that facilitates adolescent interactions (Turkstra et al., 2003).

Social–cognitive challenges are documented for some individuals with DS (Cebula et al., 2010; Iarocci et al., 2008; Smith et al., 2017), although not generally reported for youths with CP with normal cognitive–linguistic skills. However, in this study, one parent described concerns that her son with CP did not fully understand the importance of his role in and responsibility for social interactions, whereas another parent described his son's lack of interest in engaging, to the point where he did not respond to social overtures. Possible explanations for these findings include limited opportunities for social interactions since birth and the fact that these experiences are more frequently negative (Bedell et al., 2013; Donkervoort et al., 2007; Livingston et al., 2011; Maxey & Beckert, 2017; Stewart et al., 2012; Tonkin et al., 2014). These restricted and negative experiences may affect the social learning and the development of critical social interaction skills of children with congenital motor speech disorders, even those with typical cognitive and language development.

Environmental Factors

One of the challenges with the expanding worlds of adolescents is that it is harder to have environmental supports in place in the growing diversity of situations in which they interact. Parents, who typically provide those supports in earlier childhood, cannot feasibly be in all places to support their children, nor do they necessarily want to because parental presence introduces an unnatural element to many youth interactions.

Physical environment. Consistent with the ICF-CY, participants shared examples of how the surrounding environment affected social interaction opportunities and success. Noisy and crowded places were the most commonly reported environmental barriers. Participants explained that these situations created more problems with speech intelligibility and more problems with cognitive processes of paying attention to conversations and, for one participant, limited the ability to focus on communication due to a greater concern about physical navigation and safety in crowded spaces. Another example of a physical barrier to social interactions was using a wheelchair, which restricted access to social opportunities for one participant and is consistent with previous work documenting that adolescents with CP consider mobility and access as barriers to social participation (Stewart et al., 2012).

Aspects of the school setting posed specific barriers to social engagement. Small class sizes due to placement in specialized classes, modified lunch periods characterized by small groups with the presence of teachers or staff, being the only student on the special access bus, and limited accessibility of extracurricular activities were all features of the school environment that limited the opportunities that students had to engage with a wider variety of peers.

The general experience of limited opportunities for interactions and social participation at school and in the community described by participants in this study was consistent with prior research documenting participation restrictions outside of the home for children and adolescents with disabilities (Bedell et al., 2013; Coster et al., 2013; Stewart et al., 2012; Tonkin et al., 2014). Large survey studies (n = 576) of parents in the United States and Canada found that children ages 5–17 years with a range of disabilities (including CP and DS) participated less (in terms of frequency and involvement) in the community (Bedell et al., 2013) and in school (Coster et al., 2013) when compared to typically developing children and youth.

Communication partner attitudes. Another environmental barrier reported by the participants in this study, regardless of the severity of motor speech impairment, was the negative attitudes of many communication partners. These attitudes were often experienced as being underestimated and patronized and also resulted in limitations to the number and depth of interactions. Stigmatization is likely heightened during the period of adolescence given the social dynamics, with youths becoming increasingly aware of individual differences and of fitting in (Maxey & Beckert, 2017). However, negative attitudes were also encountered in interactions with adults, such as with teachers and school staff who gave up easily when communication was difficult or who demonstrated a general unwillingness to engage with the youths. These negative reactions from peers and adults reduced the youth's motivation to both engage in interactions and persist in repairing communication breakdowns, which further limited their interactions.

These findings are consistent with other studies that have documented negative attitudes toward individuals with speech disorders (Connaghan et al., 2021; Schölderle et al., 2019) as well as toward children and adolescents with CP and DS (Nadeau & Tessier, 2006; Stewart et al., 2012). Together, this literature supports the need for intervention and educational efforts to raise awareness about disability to reduce these social barriers (Nadeau & Tessier, 2006) as well as strategies for youths to manage these negative experiences.

Implications for Intervention

The insight gained from the participants in this study points to specific intervention needs for this population as well as guidance on how services could be optimized.

Intervention Targeting Adolescence

The key clinical recommendations stemming from this study are that intervention needs to be tailored to specifically address the unique period of adolescence and that intervention must take a biopsychosocial approach that considers impairments across domains (e.g., communication, motor) and the physical and social environment. Although significant changes to motor speech impairments are not anticipated in adolescents with CP and DS, the rapid and sometimes dramatic changes in communication demands and environments, coupled with the pending transition to adulthood, highlight the importance of speech-language intervention services that support clients in meeting the needs of the changing communication landscape in their everyday lives. Speech-language pathology services generally wane during adolescence (Durkin & Conti-Ramsden, 2010; Ehren, 2002; Hollands et al., 2005). This study clarifies that the need for services, however, does not wane. What does change is the needed focus of those services. Life participation approaches to intervention firmly advocate that individuals are candidates for intervention at any time in their trajectory of living with a communication disorder, particularly if changes in their life situations or environments raise new challenges and barriers to communication (Chapey et al., 2000). The participants in this study clearly identified many new and challenging communication situations (new schools, new peer groups, new extracurricular activities) in which they experienced barriers to full communicative participation as they transitioned into adolescence. Moreover, they highlighted the possible need for explicit intervention to learn social interaction skills that were delayed or not developed due to their restricted and negative experiences since early childhood.

Intervention Targeting Social Interactions

The results of this study argue strongly in favor of developing socially focused interventions for adolescents with congenital motor speech disorders. The parent participants offered recommendations and requests for interventions that shifted the focus away from working on impairment-level speech issues to instead focusing on helping the youths navigate communication in their new social world. Although efforts to support the mechanics of intelligible speech production (e.g., respiratory drive, articulatory precision) may be beneficial, some participants in this study felt that they had exhausted the extent to which their youth could implement the strategies to improve motor speech production. Furthermore, some studies have demonstrated that increased intelligibility is not necessarily correlated with increased communicative participation for individuals with motor speech disorders (Brady et al., 2011; Pennington et al., 2013), suggesting that the path to significant gains in social engagement for teens may not lie entirely through impairment-focused intervention.

Socially focused intervention would have several facets. Parent participants advocated for SLP intervention to be conducted in more ecologically valid settings. The recommendation for context-based intervention is consistent with the guidelines proposed by Baylor and Darling-White (2020) and the pediatric rehabilitation participation-intervention literature (Adair et al., 2015; Anaby et al., 2022). Moving to context-based interventions may be difficult in schools however, where speech-language intervention practices have historically been dominated by the classroom pull-out model (American Speech-Language-Hearing Association [ASHA], 2014; Brandel, 2020). Technological advances that provide remote and/or mobile or intervention solutions, such as Social Participation and Navigation (Wade et al., 2018) and the Participation and Environment Measure-Plus 2.0 (Jarvis et al., 2020), may provide complementary opportunities to support intervention in more naturalistic settings.

Another recommendation to promote socially focused intervention was the inclusion of an admired peer or mentor in intervention. Peer coaching is an intervention model in which peers serve as mentors for the development and support of skills and knowledge in a particular domain (Bedell et al., 2017). This approach may be particularly effective during adolescence, given the significant influences of peer dynamics at this stage of development. Peer-mediated approaches implemented for other populations (e.g., autism; Odom, 2019) may inform principles (see O'Rourke et al., 2020) for speech-language interventions.

Some parent participants reported their desire for guidance on how to best support their child's communication and social interactions, particularly in ways that would allow the parents to withdraw from social interactions where parents are typically not involved. This concern is consistent with research showing that children with CP rely on a caregiver to initiate conversations and topics (Pennington & McConachie, 2001). However, reliance on parents is not a natural communication pattern for typical adolescents who are exercising greater independence. Collaborative efforts are needed among clinicians, parents, youths, and others in the communication environments to help find a balance between providing the communication supports that youths might need and their desire to move toward engaging in the world without their parents being ever-present. Models that provide communication partner training tailored for different settings and varied types of communication partners might yield some potential. Drawing upon evidence-based SLP approaches, plus pediatric rehabilitation parent coach approaches (e.g., the Occupational Performance Coaching [Graham et al., 2013], Pathways and Resources for Engagement and Participation [Anaby et al., 2018]), could inform the development of parent coaching specifically for youths with motor speech disorders.

Taking a Life Participation Approach to Intervention With Adolescents With Motor Speech Disorders

ASHA has adopted the WHO's ICF framework to guide practice policy, thus calling on SLPs to take a biopsychosocial approach to intervention (Baylor & Darling-White, 2020; https://www.asha.org/policy/PPC1004-00191/). Participation-focused interventions embrace efforts to address any aspect of the communication impairment, environmental context, or personal adjustment that will help individuals gain access to their full participation in a wide array of life situations (Baylor & Darling-White, 2020). The Life Participation Approach to Aphasia (Chapey et al., 2000; Kagan & Simmons-Mackie, 2007; Kagan et al., 2008) provides a number of criteria for participation-focused intervention that may be applicable across populations, including to adolescents with congenital motor speech disorders. These criteria include that life participation is a primary purpose of intervention, that services be provided to both the individual with communication disorder and those in their circle who are impacted by the condition, and that services target environmental and personal factors when appropriate (see Baylor & Darling-White, 2020; Kagan & Simmons-Mackie, 2007; Kagan et al., 2008). Building upon these criteria and the current literature, Baylor and Darling-White (2020) provided an age- and disorder-generic framework to guide participation-focused intervention that can be applied to address social participation. Other resources for SLPs come from the pediatric rehabilitation literature providing support for interventions to promote participation that are functional, conducted in real-world contexts, and family centered (e.g., Anaby et al., 2022; Bedell et al., 2005; Darrah et al., 2011; Imms et al., 2017; O'Rourke et al., 2020; Wade et al., 2018).

Strengths, Limitations, and Future Directions

This study included person reports of adolescents with congenital motor speech disorders, a population whose voices are generally absent in research and clinical care (Darbyshire, 2000; Gibson et al., 2014). A persistent concern in health care is the use of proxies, with a notable absence of the voices of children and adolescents themselves (Sheridan et al., 2020). This may lead to an inaccurate representation of the child's actual experience and overrepresentation of the parent perspective. Although a study of adolescents with CP rating quality of life showed a mismatch with their caregiver (Büğüşan et al., 2018), revealing the limitations of using a proxy, discrepancies between adolescents and parents in the current study were infrequent. Although we provided the option for adolescents to be interviewed alone, all youth participants opted to have a parent present during their interview. The parent's presence was generally seen by the researchers as helpful to facilitating the conversation, with parent input typically confirming, clarifying, and expanding upon what their child had said, although it is unclear how the joint interviews with parents present may have limited the information that the adolescents were willing to share. Another consideration in the interpretation of the findings was the greater input provided by parents versus the adolescents. This situation may be indicative of existing communication roles of these parent–youth dyads due to the motor speech impairment and/or other factors and mirrors clinical challenges of balancing multiple perspectives for goal setting and action planning in intervention.

The study was also limited by a small sample size. Although the goal of the study was to achieve saturation, meaning that no further interviews were yielding novel information, the sample size obtained through feasible methods at the time prevents a claim of saturation. However, the common experiences described despite the range of speech and other disabilities across the participants suggest that the issues raised may be applicable to a larger population. Although CP and DS are two relatively common etiologies for adolescent motor speech disorders, their presentation across communication, motor, and cognitive domains differs. Although we heard common broad themes in the social interaction experiences in our study, consideration of similarities and differences across these diagnoses in future work with larger sample sizes is warranted. Finally, our recruitment methods led to a convenience sample of male participants only. The inclusion of female and gender nonbinary participants in future work is essential for understanding the extent to which communication experiences and goals for adolescents with motor speech disorders might vary according to gender.

Conclusions

Reports from adolescents with motor speech disorders and their parents provided a unique insight into their day-to-day experiences as well as facilitators and barriers to successful communication and social interaction. Addressing communication challenges to meet the unique social demands of this period requires tailored interventions that target the multiple contributing factors beyond speech impairment. Shifting practice toward a life participation approach to communication intervention stands to substantially improve the long-term social outcomes of adolescents with congenital motor speech disorders.

Data Availability Statement

The data sets generated and/or analyzed during the current study are not publicly available as participants did not consent to data sharing.

Funding Statement

This work was supported by the 2018 Tufts CTSI Pilot Grant (National Center for Advancing Translational Sciences, National Institutes of Health, Award UL1TR002544) and Mary Switzer Merit Fellowship (NIDILRR 90SFGE0007-01-00). The content is solely the responsibility of the authors and does not necessarily represent the official views of the funding agencies.