2.1 Participants

A purposive sampling strategy was used to include adolescents and young adults aged between 12 and 25 with speech disorders (such as stuttering or verbal dyspraxia), language disorders (such as DLD), voice disorders, or with hearing loss. We aimed to include at least 12 participants with at least two participants per type of communication disorder (speech, language, hearing or voice) and to continue recruitment until no new key concepts appeared (Patrick et al. 2011). Participants were recruited in three ways: (1) through emailing the personal network of the research team, consisting of SLTs and researchers that work with children and adolescents within this population; (2) through social media posts on LinkedIn, Facebook page for Dutch SLTs and the Instagram account of author EA; (3) through messages via professional associations (Dutch Association of Speech and Language Therapy) and patient associations.

The following sociodemographic variables were collected: age, gender, diagnosis (as mentioned by the participant) and relevant comorbidities. Twelve participants were included in this study (7 females, 5 males) with a variety of communication disorders, including language disorders, speech disorders, hearing loss, or a combination of them. There were no participants with voice disorders. The ages varied from 13 to 27 years old (nine young adults, three adolescents). The categorization of participants as either adolescents or young adults was based on the Dutch school system. Those attending secondary school were classified as adolescents, while participants who had finished secondary school were classified as young adults. The mean age of the participants was 18 years old. The characteristics of the participants are presented in Table 1. All participants participated verbally in the interview. In two interviews, participants preferred the presence of their mother during the interview.

2.2 Ethical Considerations

This study was approved by the Internal Ethical Review Board (Reference Number 211-000-2022 of the HU University of Applied Sciences Utrecht) and was conducted according to the principles of the Declaration of Helsinki (World Medical Association 2013) and the Dutch Medical Research Involving Human Subjects Act.

All participants were provided with a letter of information about the study. Three versions of letters for participants were generated: (1) A letter for children 12–16 years old, age appropriate and supported with images for visual information; (2) A letter for adolescents and young adults > 16 years with normal wording; (3) A letter for adolescents and young adults with language problems, with adjusted wording and visual support using images. In addition, an information video was available explaining the aim of the study and what was expected of the participant.

In the Netherlands, for participants under the age of 16, parental consent must be obtained next to the consent of the participant. Therefore, a separate information letter was written to inform parents.

All participants and (if applicable) their parents provided written informed consent before participating in the study.

2.3 Communicative Participation

For this study, we used the definition of Eadie et al. (2006, 309) for communicative participation: ‘taking part in life situations in which knowledge, information, ideas, or feelings are exchanged.’ Eadie describes that communicative participation includes ‘a communicative exchange between at least two communicative partners (i.e., a message with the opportunity for a response) in the context of a life situation’ (Eadie et al. 2006, 312). We further specified these criteria in earlier research (Alons et al. 2024). For the communicative exchange, we added that the communication partner needed to be a natural person that communicates either directly in the here and now or over a prolonged period and physical distance (e.g., in texting a friend, emailing a teacher). To be about the context of a life situation, the situation had to entail performing a social role within a social context. This could either be because of a specific communication partner or by mentioning a specific location.

2.4 Data Collection

This study involved in-depth interviews about self-experienced communicative participation using diaries as a sensitizing exercise. The data collection was carried out by the first author, EA (SLT and PhD student). EA received training and coaching in interviewing through a professional course and coaching from colleagues in the research team. As an SLT herself, EA was experienced in communicating with people with communication difficulties. She was able to support communication whenever necessary.

Contact between the EA and the participant began as soon as the participant expressed interest via email or an online registration form. The information letter was sent to the participant, and the participant was invited to a short introductory meeting, either in person or online. During this meeting, EA introduced herself and explained the purpose of the study. The participant was given the opportunity to ask questions and decide whether or not to participate. If the participant decided to participate, data collection was started.

2.5 Analysis

Analysis was based on the interviews and the diaries. The diaries initially informed the interviews. In some cases, the diaries contained more than just a (short) description of the situation; they also included a direct reflection on the situation. This reflection was not always repeated in the same level of detail during the interview, but instead, additional questions were asked. If this was the case, the entire reflection from the diary was included in the analysis.

All interviews were transcribed verbatim by EA. After the interview, discussed situations were summarized and sent to the participant for a member check. Participants were asked if the described situations were accurate and whether we addressed all situations that are relevant for them. To ensure participants would be able to understand the member checks, short sentences were used, and structure was provided, by clustering situations by category (e.g., all school examples together). Two participants did not respond to the member check. One participant responded that he thought of a few more situations after the interview and sent a description of these per email. These were also included in the analysis. All other participants agreed with the content of the member check.

Data analysis was performed by authors EA and NW (PhD student and SLT). The first two transcripts were coded by two authors independently and discussed. The other transcripts were coded by EA.

The data were analysed on manifest content using content analysis, which can be used to describe a phenomenon in a conceptual form (Elo and Kyngäs 2008) and allows words to be distilled into fewer content-related categories. The analysis procedure was inspired by the work of Elo and Kyngäs (2008), although their suggested procedure was not strictly followed, as they also report that there are no simple guidelines for analysis, as each research project is unique (Elo and Kyngäs 2008). Figure 1 provides a detailed description of the steps taken during the analysis process.

The analysis started with selecting units of analysis, for which we used the situations that were mentioned by the participant (either based on the diary, or on the additional questions). Based on these units of analysis, analysis continued for both aims separately.

3.1 Communicative Participation Situations Described by the Participants

The participants reported a total of 234 situations in which they needed to communicate. Table 2 provides an overview of the identified domains and examples of codes that were classified within each domain. Most situations (95/234, 40.6%) were classified in ICF domain 8, major life areas. These situations concerned going to school or participating in work. 86/234 situations (36.8%) were classified in ICF domain 7, interpersonal interactions and relationships. Other situations were classified in domain 4, mobility (6/234, 2.6%); domain 5, self-care (9/234, 3.8%); domain 6, domestic life (14/234, 6.0%); and domain 9, community, social and civic life (24/234, 10.3%). No situations were classified into domains 1, 2 and 3.

Most of the situations were found in domains 7 and 8. As these domains are quite broad, it was decided to divide the situations into sub-domains to better indicate what the situations were about. In domain 7, most situations were related to interacting with friends, parents/siblings and strangers. However, talking to strangers was only mentioned by the young adults, not by the adolescents. In domain 8, many situations related to school were discussed for both age groups. Young adults also mentioned situations related to work.

When the situations are separated into those mentioned by adolescents (N = 51) and those mentioned by young adults (N = 183), a few differences become apparent. First, domains 4, 5 and 6 are rarely mentioned by adolescents. Second, young adults mention many items in the subdomain of work (N = 43) that are not mentioned by adolescents. Finally, within domain 9, adolescents mention only situations related to sports, whereas young adults discuss sports as well as other activities, such as arts and culture, community life, and religion.

3.2 Relevant Aspects of Communicative Participation Situations

Two hundred twenty-seven aspects that influenced the communicative participation situations were coded from the transcripts. These aspects were grouped into concepts, resulting in 37 concepts of communicative participation. Thirty-six concepts were categorized within one of the six categories (person, topic, location, moment, mode) of communicative participation described by Ter Wal et al. (2023). An example of this coding process is provided in Table 3. The overview of concepts categorized in categories is presented in Table 4. One concept called compensation techniques and tools could not be divided into one of the categories. This concept is about the use of compensation techniques in conversations that facilitate participation. For example, asking for clarification from the teacher in case of misunderstanding or the use of hearing aids enabling participation. It runs through all categories and is worth mentioning separately. All categories and their meaning, and the remaining concept are described below.

TABLE 3. Coding process from diary to aspects, concepts and categories.

Diary situation	Situation (Unit of analysis)	Aspects (Inductive codes)	Concepts (Inductive grouping)	Categories (Ter Wal et al. 2023) (Deductive categorization)
	If I have to call someone, for example to the doctor or something, to the assistant, she knows I have verbal dyspraxia (aspect 1) but for example to another practice they don't understand me at once. Of course that makes sense because you don't know how I talk. So then it is more difficult for some people to understand me. Others do understand me better if they have had an experience like that (aspect 2). But in general they find it difficult to understand me because of course I also talk and articulate differently. […] But with me, if I have someone on the phone, for example, I don't have the face to go with it. […] Does that person understand me at once? But you can't see that on a phone call like that. So no, that's why it is difficult for me (aspect 3).	Calling a familiar doctor's assistant. Calling an unfamiliar doctor's assistant. Making phone calls is extra difficult, because you cannot see each other.	Health care professional Familiar person Stranger (Video)calling	Person Mode

• Note: Photo is printed with permission of the participant.

The interviews were conducted in Dutch. Quotes were translated into English, and we aimed to capture both the intended meaning of the quotes, and the language form. The following situations provide examples from participants using quotes, which means some of the quotes have errors in grammar or word choice. Those are a direct reflection of the Dutch mistakes made by the participants.

3.3 Personal Character

4.1 Participation Situations

The communicative participation situations mentioned by participants can be categorized in 6 out of 9 domains of the ICF Activities and Participation chapter (domains 4, 5, 6, 7, 8 and 9). In a systematic literature review (Alons et al. 2024), which searched for items measuring communicative participation from existing PROMs and parent reports, items were categorized into the ICF domains as well. When comparing the results of the covered domains, some differences become apparent. In the literature review, it was found that existing items covered only 5 ICF domains (domains 5, 6, 7, 8 and 9), and most items were related to domain 7: interpersonal interactions and relationships. The found items were generally not developed from the perspective of children and adolescents themselves. In this study, we focused on the adolescents’ and young adults’ perspectives and found different results. First, adolescents and young adults mentioned situations related to domain 4, mobility, a domain that was not found in the literature review. These situations refer to participation situations in which communication is needed when travelling by public transport. Second, more situations were found referring to domain 8, which is about school and work. This domain was covered in the literature review, but only 13.8% of the items were about communicative participation in school, compared to 40.6% in this study. Including the perspectives of adolescents and young adults brings focus to additional areas that are prioritized by youth, thereby expanding our understanding of their experiences.

In this study, we aimed to recruit at least 12 participants, representing both adolescents and young adults. Adolescents mention none or only a few situations of ICF domains: mobility (travelling by public transport), self-care (communicating with a doctor, making appointments at the dentist), and domestic life (asking a shop assistant for something). It could be that these situations are not yet frequent in adolescents’ lives, or that they always participate in these kinds of situations with an adult (e.g., parent) present. As a result, these situations may not be considered very important from adolescents’ perspectives. Within ICF domain 9 Leisure, adolescents only mention examples of situations involving sports. Young adults, however, also mention situations where they engage in social contacts in public places, such as cafes, restaurants, bars or discotheques. Although the adolescent group consisted of only three participants, and these results should be interpreted with this in mind, it can be assumed that an individual's social context grows as they grow up, leading to a larger set of relevant situations.

Comparing this finding with the descriptions of life stages according to the LCHD framework, this growth is also evident (Wood et al. 2017; Arnett 2000). Becoming a young adult means moving out on your own for the first time, starting a relationship and setting out on a clear career path (Wood et al. 2017). Young adults start developing the ability to become self-sufficient, assume more adult roles and responsibilities and obtain a level of education and training that sets the foundation for work during the adult years (Arnett 2000). Within the ICF domains 4 Mobility, 5 Self-Care, and 6 Domestic Life, a young adult may report on more participation situations than an adolescent.

4.2 Concepts Describing Communicative Participation

For the second research question, the situations mentioned by the participants were further explored. This led to concepts describing communicative participation. Our approach was based on the concept elicitation study by Ter Wal et al. (2023), who conducted a similar study with adults. There was one important difference in method: Ter Wal et al. (2023) asked participants about situations in which they had difficulty participating because of their communication problems. In this study we asked about difficult situations, but also situations in which they had no difficulties. This, combined with the fact that we focused on a different target population, led to the identification of new concepts that were not found in the concept elicitation study in adults (Ter Wal et al. 2023).

We found a concept called compensation techniques and tools. This concept refers to the use of strategies, techniques and tools that participants mentioned as helpful in their communicative participation. Sometimes, participants no longer experienced issues with participation because they had become so used to the application of compensation techniques or using some kind of tool. They do not know better than to have to use these compensation techniques and often do not experience it as difficult or problematic. By asking also about positive experiences with communicative participation, and, for example, by asking about situations in which a particular technique is used, we gained more information about important concepts around communicative participation.

Furthermore, we found an additional concept within the element person: feeling connected to the communication partner. In the interviews, participants experienced better communicative participation when they felt a connection to the communication partner. This concerned both acquaintances and strangers. The connection was based on common interests (e.g., spirituality or creativity) and made it easier for them to talk about a topic. They were more likely to feel they could arrive at a shared meaning in the conversation. In literature, this topic is described as having common ground: a set of shared knowledge, beliefs and assumptions that exists between two speakers (Clark 1996). Feeling common ground with a conversational partner provides a relief of the communication burden (Doedens and Meteyard 2020).

Compared to Ter Wal et al. (2023), some differences in concepts were identified, reflecting the participants' different life stages. For instance, in our study with adolescents and young adults, we identified the concept of school within the category of Location and other children within the category of Person. In contrast, Ter Wal et al. (2023) found concepts such as email, personal mail, and meetings in the category Mode, as well as administration in the category Topic. These differences align with the participants’ life stages and underscore the importance of developing separate measurement instruments that account for such variations, as also recommended by Darling-White (2017).

This study aimed to explore situations that might be relevant to include in an outcome measure for communicative participation, aligning in some ways with the work of Markhamet al. (2009). Markham and colleagues conducted a qualitative study on the quality of life experiences of children and young people (6–18 years old) with speech language and communication needs, ultimately aiming to create a quality of life measure. Both studies share similarities in their goals—developing outcome measures—and in their inclusion of participants with diverse ages and communication challenges. However, the central construct of interest differs: while Markham et al. (2009) focused on quality of life, our study centred on communicative participation. There is some overlap between our findings and Markham's identified themes, such as emotions, relationships, and school. Markham's corresponding codes (e.g., confidence, family, friendships, teachers, and noise) also align with concepts we identified as influencing communicative participation. However, Markham et al. identified additional codes, such as achievement, anxiety, frustration, bullying, and lonely, which we did not observe. This discrepancy may be due to the broader scope of quality of life as a construct. Some of Markham's codes reflect the consequences of (un)successful participation (e.g., bullying or frustration) rather than describing participation itself. This distinction is critical to consider in both clinical practice and the selection of outcome measures for scientific research.

4.3 Clinical Implications

Previously conducted research that focuses on obtaining perspectives of adolescents and/or young adults with a variety of communication problems has shown that successful communication is not only about the communication disorder, but also about personal factors and environmental factors that need to be taken into account (Zaidman-Zait and Dotan 2017; Ekström et al. 2023; Cobb et al. 2019; Connaghan et al. 2022; Kelly et al. 2018). There is a need for a holistic approach in the field of SLT, in which it is essential to understand the complex interaction between communication abilities, personal factors and environmental factors (Ekström et al. 2023; Cobb et al. 2019; Connaghan et al. 2022). We believe that this study forms a first step towards this holistic, person-centred approach. Where the previous research focuses on obtaining themes to obtain deep understanding, we focused on a more broader approach by obtaining key concepts that influence communicative participation and explicitly with the goal to create items for a PROM.

This study was carried out to obtain adolescents' and young adults' perspectives on communicative participation to inform the development of a PROM. As the results show, capturing a complex construct such as communicative participation is challenging, as communicative participation involves many factors at different levels that may be experienced differently by individuals. A PROM will be a valuable addition to the clinical practice of speech and language therapy, and can enhance the conversation between the client and the SLT about what factors apply to the life of the client and to what degree (Gibbons et al. 2021). The overview of all concepts can provide guidance for the SLT to start the conversation about this topic as a first step towards person-centred, participation-focused therapy.

Although the group of adolescents was relatively small compared to the group of young adults, we found differences between the identified situations between the two groups. Some situations mentioned by the young adults were not mentioned by the adolescents. It is therefore worth considering developing two separate instruments adapted to the context of adolescents or young adults. However, this decision cannot be based on information from only three adolescents.

4.4 Study Limitations

Although we believe this study is informative and a good step towards the development of a tool that measures communicative participation, there are some limitations worth mentioning. First, despite many attempts to recruit a representative sample with at least two participants per type of communication disorder (speech, language, hearing or voice), we did not succeed in including participants with voice disorders. In addition, seven participants had the diagnosis DLD. The results presented in this study therefore contain an over-representation of people with DLD and under-representation of people with voice disorders. The perspective of adolescents and young adults with voice disorders was not included in the results of this study, and thereby in the first phase of the PROM development, which is a clear limitation of the study. However, earlier research on adults shows that adults with different communication problems describe similar communicative participation problems (Baylor et al. 2011). In their paper, Baylor and colleagues present an example of participation in a loud environment, in which people with speech and voice disorders experience problems in not being loud enough, and people with other communication problems report on following the conversation and being distracted by all the noise. In terms of the first research question, it is therefore assumable that we would not have found different participation situations. In terms of the second research question, it is possible that we missed out on some concepts that describe the difficulties from the perspective of individuals with voice problems. More attention to this subject is required. In terms of further developing the PROM, extra attention will be paid to testing the comprehensiveness of the PROM among individuals with voice disorders.

Second, it was difficult to recruit the group of adolescents, which caused only three adolescents to participate. We were unable to recruit participants aged between 15 and 17. Some of the potential participants declined to participate, stating that they did not want to be associated with their disorder and simply wished to be treated equally to their peers. Unfortunately, this means that we missed out on a relatively large group, and their perspectives were not fully captured. This limitation is acknowledged in this study.

Third, in this study we included a wide group of individuals with great variation in type of communication disorder, keeping in mind that results would eventually inform a generic PROM that is applicable to a large group of people, also with variation in nature and severity of communication problems. As such, the current study adds to the literature. However, one could also see this variation as a lack of depth within certain subgroups of our population.

4.5 Conclusions and Future Directions

The results provided us with an overview of 234 self-experience participation situations that require communication, from which we identified 37 concepts describing communicative participation. This led to more insight into the perspective of adolescents and young adults with communication problems on communicative participation. The results will be used to develop a PROM (in the form of an item bank) to measure communicative participation in children, adolescents and young adults.

This study shows that adolescents and young adults find different situations important than described in a literature review of existing items on communicative participation (Alons et al. 2024). While it is acknowledged that the target population for whom a measurement instrument is being developed should be involved, the comparison between this study and the literature review highlights the necessity of involving children, adolescents, and young adults themselves (Terwee et al. 2018; Patrick et al. 2011). Only by doing so can we ensure that the measuring instrument accurately measures what is important to the target population. The identified communicative participation situations form the basis for developing an item bank for measuring communicative participation in adolescents and young adults with communication disorders.

The mentioned situations will be combined with items found in literature (Alons et al. 2024), resulting in a first draft of an item bank. In upcoming studies, the items will extensively be tested on quality aspects comprehensiveness, comprehensibility and relevance in adolescents and young adults separately, following the PROM development steps outlined by the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) initiative (Terwee et al. 2018).

Another important future direction is the inclusion of children under the age of 12. Research on this target population is ongoing and will be reported on in a separate paper.