Understanding the Perspectives of School Children Who Stutter: A Rapid Review

2.1 Search Parameters and Database Searches

The decision to focus on the school-age group was grounded in recognising the potentially heightened emotional and quality-of-life impact of stuttering on children between the ages of 6 and 12 years (Guitar 2014). By concentrating on this age cohort, the review aimed to provide a more nuanced understanding of the methods and approaches utilised in studying the perspectives of school children.

We identified keywords based on the research question, which involved four main concepts: (1) children, (2) stuttering, (3) perspective and (4) method. Each concept was organized with its synonyms (see Table 2). Before initiating the search, the three authors reached a consensus on these keywords and consulted with an experienced librarian.

2.2 Conducting the Search

The first author searched five databases, EBSCO CINAHL, Scopus, EBSCO PsycINFO, Embase and OVID Medline, following consultation with the second and third authors and an experienced librarian. The references and bibliographies of the included studies were checked for additional citations. Electronic alerts for key journals were set up to identify newly published work. Database filters were applied to include only English-language and peer-reviewed journal articles involving SCWS.

2.3 Selecting Studies

Selecting the studies involved two phases. Search outputs were checked for duplication using the reference management tools Endnote Desktop 20 (2023) and Rayyan (Ouzzani et al. 2016). Furthermore, Rayyan (Ouzzani et al. 2016) facilitated screening by the three authors and made similarities and variations in decision-making during the two screening phases transparent. In Phase 1, the first author screened titles and abstracts based on the predetermined inclusion criteria. The inclusion criteria for this review were as follows: articles must include SCWS between the ages of 6 and 12 years, be published in English-language, and be peer-reviewed publications available electronically only. Grey literature was excluded from our study due to time constraints. The second and third authors conducted blind title and abstract screening of a random selection of 20% of the papers. During this phase, articles failing to meet the criteria were excluded. If the reviewers were uncertain, the studies were included in a full-text review.

In Phase 2, the first author conducted a full-text screen. The second and third authors independently assessed 100% of the articles to ensure fit with the inclusion criteria. Subsequently, the first author screened the reference lists of the included papers. The second and third authors independently assessed 100% of the screened reference lists. There was 100% agreement between the reviewers in relation to the final selection of articles. If discrepancies had arisen, the researchers would have engaged in detailed discussions to reach an agreement by consciences. This approach would have ensured that all included studies adhered to the predefined eligibility criteria and reduced potential biases (Lefebvre et al. 2019).

2.4 Extracting Data

Two data extraction forms were created. Table 3 presents an overview of the studies and includes details about study design, sample size, participant age ranges, geographical location and methods used to elicit voice. Table 4 highlights relevant characteristics of the methods identified in the studies.

2.5 Data Analysis

A narrative summary of the data was conducted (Boland et al. 2017). It involved categorising the methods based on what they aimed to measure and identifying differences and similarities across methods. Additionally, we identified the contexts in which children spoke and the topics they discussed as reported in the studies in question.

3.1 Study Purposes

The stated study's purposes varied across studies. For instance, Lau et al. (2012) aimed to understand the experiences of SCWS regarding their parental upbringing and interactions with both parents and peers. Prince et al. (2022), Caughter and Dunsmuir (2017), Fourlas et al. (2022), Gerlach et al. (2019), Turnbull (2006) and Carey et al. (2014) all explored the perceptions of SCWS, and its impact of the intervention provided. Iimura et al. (2021) focused on exploring the requests made by SCWS to people surrounding them. Moreover, studies conducted by Fourlas et al. (2022), Gerlach et al. (2019), Moïse-Richard et al. (2021), Prince et al. (2022), Carey et al. (2014) and Rodgers et al. (2020) explore the children's experiences, emotions, opinions on progress, satisfaction and the realisation of their aspirations. Notably, studies by Prince et al. (2022), Rodgers et al. (2020), Berquez et al. (2015) and Cooke and Millard (2018) specifically explored the children's aspirations to achieve their most important outcome. Finally, Berquez et al. (2011) explored children's perspectives on school support.

3.2 Locations

Data collection locations exhibited variability, encompassing clinical settings, residential environments, educational institutions and community contexts. However, three studies, namely Rodgers et al. (2020), Berquez et al. (2011) and Moïse-Richard et al. (2021), did not provide specific information about the data collection sites for children. Additionally, none of the studies clarified whether the choice of data collection space was determined by the children themselves.

3.3 Characteristics of the Participants

The 13 studies included 232 participants who stuttered age between 6 and 18 years, a range that encompasses the target age group of this review (6–12 years) (Table 3). Nine studies explicitly stated the number of targeted participants who were school-age 6–12 years (#86 in total). Sample sizes varied, with a minimum of one participant (Turnbull 2006; Fourlas et al. 2022) and a maximum of 64 participants, 43 of whom were school-age (Iimura et al. 2021).

3.4 Data Collection Methods to Elicit Voice

All the studies used one qualitative method to elicit the children's voices, with Prince et al. (2022) using three and Fourlas et al. (2022) using four methods (See Table 3 and Appendix A). In the 13 studies, a total of 14 different methods were employed to elicit the voices of SCWS (Table 4). The most prevalent method employed was open-ended questions, within semi-structured interviews. The predominant mode of response was verbal, utilised in eight of the methods, while four utilised written responses, and one employed drawing graphs (Fourlas et al. 2022). One study noted that their method involved self-reporting (Moïse-Richard et al. 2021). However, they did not explicitly specify whether the children answered verbally, non-verbally or in another mode of response. Furthermore, it was not clear whether the questions were read aloud by the participants or read by the researchers.

3.5 Purpose of the Methods

Iimura et al. (2021) employed a questionnaire to identify their potential requests to people around them. Prince et al. (2022) aimed to gauge the participants' progress in therapy. Rodgers et al. (2020) and Berquez et al. (2015) explored therapy expectations or hopes. Fourlas et al. (2022) asked children to express feelings about stuttering using emotional graphs, explored their therapy expectations, and conducted structured interviews to explore the child's perspective. Fourlas et al. (2022) also examined participants' aspirations before therapy and the influence of thoughts and emotions through cognitive cycles, as well as their experience with the Lexipontix program. Lau et al. (2012) focused on the child's life experiences and reflections on stuttering with questions related to school, peers, relationships and parental involvement. Caughter and Dunsmuir (2017) explored participants' points of view and experiences nine months after the intervention. Gerlach et al. (2019) aimed to comprehend how participants attributed meaning to their experiences at the National Association of Young People Who Stutter (FRIENDS) convention, while Moïse-Richard et al. (2021) collected feedback and suggestions for future development of the therapy. Carey et al. (2014) evaluated satisfaction with Webcam treatment delivery. Cooke and Millard (2018) and Berquez et al. (2011) respectively used the Delphi method to determine what children who stutter consider the most important therapy outcomes and the essential knowledge needed to support a stuttering child in school. Finally, Turnbull (2006) used semi-structured interviews to gather feedback from SCWS three months after their intervention.

3.6 What the Children Said About Their Talking

This review primarily found a noticeable lack of studies that explore children's viewpoints exclusively. Out of all the studies analysed, Berquez et al. (2015) were the only ones that explored children's perspectives on speaking in school as part of their study. The participants demonstrated a strong desire to speak out, respond to inquiries and participate in group discussions, highlighting their determination to overcome speech-related difficulties in school settings. Furthermore, Turnbull's case study (2006) briefly covered the topic in an interview with girl who stutter. The participant reported that the other students listened more during her conversations following the intervention. Additionally, she noted that after the intervention, everyone in the class noticed how challenging it was for her to speak. Despite the intervention, some children continued to bully her about her speech, but she now feels less bothered by it. Berquez et al. (2011) also discussed SCWS's perspectives on their speech. However, whether the statements originated directly from the children or other study participants was unclear. Additionally, part of their study involved quantitatively rating statements, which was not the focus of our review.

The other studies included in this review covered different topics related to stuttering rather than speaking. Lau et al. (2012) and Caughter and Dunsmuir (2017) offered perspectives on the psychological impact of stuttering on children. Lau et al. (2012) highlighted the experience of social isolation and dissatisfaction resulting from stuttering, compounded by difficulties establishing friendships in a school setting. In contrast, participants experienced increased comfort in speaking with their peers following the interventions, indicating positive social adaptations. Caughter and Dunsmuir (2017) reported changes in children's perceptions after undergoing speech therapy, noting that speaking at a slower pace improved their speech's smoothness. Participants also reassessed their perception of stuttering as a special need, demonstrating changing viewpoints after receiving treatment.

Participants in the Lexipontix Programme reported improvements in classroom participation and reduced phone-related anxiety, indicating enhanced speech fluency following therapeutic interventions (Fourlas et al. 2022). According to Gerlach et al. (2019), participants reported increased confidence when discussing stuttering following a convention. Witnessing others manage their stutter with confidence positively influenced their perceptions despite occasional challenges resurfacing post-convention. Moïse-Richard et al. (2021) participants found it easier to speak in an empty virtual reality room, which they reported also helped them prepare for potential laughter or reactions from others.

4.1 Space

The concept of ‘Space’ in Lundy's (2007) framework is a mechanism that affords children the opportunity to articulate their perspectives. Emphasis is placed on the proactive involvement of participants who were given the chance to express their willingness to engage in these Spaces. Furthermore, it pertains to the tangible and intangible surroundings in which children and adolescents are positioned and the extent to which these surroundings can either enable or impede their capacity to articulate their perspectives and ensure their opinions are acknowledged (McAllister et al. 2022). This necessitates the presentation of information in a child-friendly manner and the implementation of methods that actively engage children in the research process (Olçay Gül and Vuran 2015). All studies provided ‘Space’ for the SCWS. While the majority of included studies provided consent forms for the parents and assent forms for the children (e.g., Lau et al. 2012; Iimura et al. 2021; Prince et al. 2022; Carey et al. 2014; Caughter and Dunsmuir 2017), six studies lacked clarity in this aspect (Berquez et al. 2011, 2015; Cooke and Millard 2018; Fourlas et al. 2022; Gerlach et al. 2019; Rodgers et al. 2020). Notably, Moïse-Richard et al.’s (2021) study completed assent forms with children older than 13; however, for younger children, they collected the consent form from the participants’ parents only. Moreover, it was unclear in the studies how the researchers collected the consent assent, for example, in person, online or over the phone. Turnbull (2006) did present the information about the study to the child verbally and requested assent verbally by asking if she was willing to join.

Furthermore, no information was provided on whether children had any choice in choosing the location of the data collection. Offering a child a choice between online or face-to-face interviews or between having the interview in their home or in the clinic could influence their participation and willingness to express themselves. The surroundings can influence the children's participation (McAllister et al. 2022). However, it is worth noting that the researcher might have limited resources or space to give children a choice.

4.2 Voice

The second dimension of Lundy's (2007) framework, denoted as ‘Voice’, explores the extent to which children are afforded the opportunity to articulate their perspectives. Furthermore, researchers are urged to provide children with essential information to formulate opinions and offer diverse avenues for self-expression, enabling them to choose the method that best suits them (Carroll and Twomey 2021). All the studies in this review employed one or more qualitative methods to elicit children's voices, aligning with the perspective of Lyons et al. (2022). Lyons et al. (2022) posit that the utilisation of qualitative research methods creates a space for children to explore their lived experiences, preferences, and values. However, a predominant focus on verbal or written modes of response is evident in the studies, and no study mentioned if they gave the children the choice of method of communication. This lack of choice may lead to lack of potential diversity and richness offered by alternative methods, such as visual methods, including photography and drawing activities, walk and talk activities, puppets and scrapbooks (Gillett-Swan and Sargeant 2019; Hanna 2022; Lyons et al. 2022). The combination of diverse methods can be used to elicit in-depth discussion from participants about a topic and ensure the inclusion of a range of voices (Carroll and Twomey 2021; Lyons et al. 2022; McAllister et al. 2022). An exception is noted in the study by Fourlas et al. (2022), which demonstrated variability in methods for collecting children's perspectives. However, clarity was lacking, particularly regarding the utilisation of certain methods, such as the emotion graph (Fourlas et al. 2022). The use of diverse and creative communication methods supports children's expression, ensuring the inclusion of a range of voices (Carroll and Twomey 2021; McAllister et al. 2022). Furthermore, the implementation of participatory methods is advocated to establish parity in relationships and mitigate power differentials in research, ensuring a shared responsibility and knowledge-sharing between researchers and participants (Merrick et al. 2019).

4.3 Audience and Influence

In Lundy's (2007)’s framework, ‘Audience’ is where children's views are listened to, and ‘Influence’ recognises that their views are given due weight. The framework centres on the recognition and active integration of children's perspectives, evaluating the extent to which their opinions are valued, deliberated upon and contribute to transformative change. Although all the included studies listened to the SCWS, the studies need more specific information regarding the implementation or response to SCWS perspectives, as there are uncertainties about any subsequent actions. Notably, Moïse-Richard et al.’s (2021) study employed a Likert scale (0–10) for children to respond to each question. The researchers utilised these responses to generate a hierarchy of feared reactions tailored to individual participants throughout their engagement in an immersive virtual classroom environment, which gives weight to the children's voices. Furthermore, Berquez et al. (2011) and Cooke and Millard (2018) as a part of the Delphi method, included the children in the process of question formulation as part of their research.

Nevertheless, some researchers acknowledged the importance of considering children's perspectives and their potential influence on treatments in studies such as those conducted by Fourlas et al. (2022), Moïse-Richard et al. (2021), Caughter and Dunsmuir (2017) and Carey et al. (2014). These studies facilitated the incorporation of children's perspectives in discussions about the development of their individual treatment plan, aiming for a more comprehensive understanding of the child. However, only two studies Berquez et al. (2011) and Cooke and Millard (2018) involved the children's voices in developing the methods or methods to elicit their voices. Additionally, the included studies advocate for the active engagement of SCWS in therapeutic environments and future research endeavours, as articulated by Prince et al. (2022), Fourlas et al. (2022) and Caughter and Dunsmuir (2017).

4.4 Hart's Level 4 Assigned but Informed

Seven out of 13 studies scored as level 4 ‘assigned but informed’, which happens when children comprehend the project's goals, are aware of who decided on their involvement and the reasons behind it, have a meaningful role rather than a superficial one, and volunteer for the project after understanding its details (Berquez et al. 2015; Carey et al. 2014; Caughter and Dunsmuir 2017; Iimura et al. 2021; Lau et al. 2012; Prince et al. 2022; Turnbull 2006). Four studies (Fourlas et al. 2022; Gerlach et al. 2019; Moïse-Richard et al. 2021; Rodgers et al. 2020) uniformly featured instances where children are given a voice but have limited choice or input (Lundy 2018), categorising them as level 3 ‘Tokenism’ on Hart's ladder. This level was chosen because there was no clear information regarding the children's understanding of the research process and consent to join. This observation corresponds with the potential tokenistic nature of decision-making processes when individuals with speech, language and communication needs are included (Lyons et al. 2022). However, according to Lundy (2018), engaging in tokenistic participation might offer specific children a beneficial learning experience.

4.5 Hart's Level 5 Consulted and Informed

Two studies were at level 5 on Hart's ladder as the children were consulted to generate questions and generated statements following the Delphi method included in the studies (Cooke and Millard 2018; Berquez et al. 2011). Bedoin and Scelles (2015), argue that it is crucial to include participants actively in the development and evaluation of first-person approaches; this not only enhances client-centred practices but also highlights possible deficiencies in their research and practice

4.6 Children's Perspectives on Their Stuttering

Berquez et al. (2015) explored children's perspectives on speaking as part of their study. Their participants expressed a strong desire to speak more and overcome the challenges they face talking in school, such as speaking and reading more out loud in the classroom and participating in tasks involving speaking in school.

Furthermore, Turnbull's (2006) intervention helped raise awareness of the participants’ school friends’ understanding of what she was going through, and that they should listen more to her.

Moreover, the other included studies also provide valuable insights into SCWS's diverse experiences and perspectives. They include problems in different settings (Lau et al. 2012), changes for the better after interventions (Caughter and Dunsmuir 2017; Fourlas et al. 2022) and the possible benefits of communication-focused environments like virtual reality (Moïse-Richard et al. 2021). Overall, these results show that children's experiences with stuttering are multifaceted. However, this review draws attention to a significant lack of qualitative research relating to the perspectives of SCWS regarding their stuttering.

4.7 Research and Clinical Implications

This review highlights the importance of involving school-aged children who stutter (SCWS) in both research and clinical practice, recognising their distinct perspectives, which differ from those of adults or parents (Gallagher et al. 2019; Goldbart and Marshall 2011; Markham and Dean 2006; Markham et al. 2009; Roulstone and McLeod 2011; Salvo and Seery 2021). Future research should focus on child-led approaches that explore SCWS's nuanced experiences and aspirations, challenging adult-centric assumptions.

Clinically, speech-language therapists (SLTs) are urged to reflect on their professional and ethical responsibilities when working with children (McAllister et al. 2022). This includes considering the Lundy Model and reflective questions proposed by McAllister et al. (2022) to guide their own practice and professional development. The Lundy Model (2007) offers a practical framework for ensuring genuine participation in both research and practice by promoting space, voice, audience and influence. This approach supports the obligations set out in the United Nations Convention on the Rights of the Child (UNCRC) (United Nations 1989), particularly Article 12, which asserts the child's right to be heard. By prioritising children's voices, SLTs can ensure that children's lived experiences remain central to interventions (McAllister et al. 2022).

SLTs are also encouraged to use multimodal, child-friendly tools such as drawing, photography and storytelling (Bölte 2023; McAllister et al. 2022). These approaches can help children express how stuttering affects their daily lives, resulting in more individualised and meaningful interventions (Bedoin and Scelles 2015; Bölte 2023).

Therapists should further reflect on their communication styles during therapy, ensuring that interactions are respectful, accessible and empowering. Including children in decision-making—rather than relying solely on parent perspectives—can strengthen therapeutic relationships, improve outcomes and uphold children's rights (Bedoin and Scelles 2015; Brundage et al. 2021; Carroll and Twomey 2021; Dockett and Perry 2007; McAllister et al. 2022; Merrick et al. 2019; Tichenor, Herring et al. 2022).

Finally, bridging research and practice is essential for advancing evidence-based, person-centred stuttering support (Chun et al. 2010). SLTs should engage with and contribute to research that values children's voices, ensuring authentic participation rather than tokenistic. Future studies should examine how participatory methods influence both clinical outcomes and long-term well-being. By actively involving SCWS in shaping their support, SLTs can foster more ethical, effective and empowering clinical environments.

4.8 Strengths and Limitations

This review fills an important gap in the literature by highlighting the methods used in studies that explore the perspectives of school children who stutter (SCWS) and their experiences with stuttering. It focuses specifically on research that uses qualitative and qualitative components of the mixed methods. The review was conducted in a systematic way and included a peer review process and Endnote Desktop 20 (2023) and Rayyan (Ouzzani et al. 2016) to manage references and to facilitate screening. However, the search strategy's predefined inclusion and exclusion criteria may have inadvertently overlooked or excluded relevant grey literature, as the search did not encompass dissertations or theses. The absence of specific articles focusing on the qualitative exploration of the perspectives of SCWS represents a notable gap in the literature. Due to the limited number of studies found, the studies included did not categorise participants into distinct age groups, potentially overlooking nuances in the perspectives of children versus older school-age children age more than 13. This limitation underscores the importance of future research considering not only what is analysed but also how it is analysed, providing a more nuanced understanding of the diverse perspectives within the broader category of school-age children who stutter.