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Communicative Participation in Adolescents and Young Adults: A Concept Elicitation Study

BACKGROUND: Communicative participation is the primary outcome of speech and language therapy for people with communication disorders. However, there are no instruments that measure communicative participation from the perspective of adolescents and young adults. Moreover, little research has been conducted in which adolescents and young adults with various communication problems were asked about relevant participation situations in which they need to communicate. Before a new measurement instrument can be developed, it is necessary to explore adolescents' and young adults' views on their communicative participation.AIMS: In this study we identified situations in which adolescents and young adults experience barriers participating because of communication problems, as well as situations in which they have no difficulties. In addition, we identified aspects of these situations that influence communicative participation in order to gain a deeper understanding of concepts related to communicative participation.METHODS AND PROCEDURES: This concept elicitation study concerned in-depth interviews on self-experienced communicative participation, in which diaries were used as a sensitizing exercise. Participants were asked to keep a diary for 1-2 weeks in which they described their communicative participation during the day. They were asked to describe situations in which they were not able to participate because of their communication disorder, and to describe situations in which they were able to participate. Within 1 week after completing the diary, participants were invited for an in-depth interview, in which the content of the diary was discussed.OUTCOMES AND RESULTS: Twelve participants were included in this study (7 females, 5 males; 13-27 years) with a variety of communication disorders, including language disorders, speech disorders, hearing loss, or a combination of them. They described a total of 234 situations related to different domains (e.g., communicative participation in school or with friends). Out of these situations, 37 concepts that influence communicative participation were found that were related to the six categories: person (e.g., strangers), topic (e.g., figurative language), pace (e.g., time pressure), location (e.g., school), moment (e.g., energy) and mode (e.g., group conversations).CONCLUSIONS AND IMPLICATIONS: The results of the study provide understanding in adolescents' and young adults' perspectives on communicative participation. The identified situations form the basis for developing an item bank for measuring communicative participation in adolescents and young adults with communication disorders. In upcoming studies, the items will be extensively assessed on the quality aspects of comprehensiveness, comprehensibility and relevance.WHAT THIS PAPER ADDS: What is already known on this subject Communicative participation is the most important outcome of speech and language therapy. However, measurement instruments (preferably patient reported outcome measures, PROMs) to assess communicative participation of adolescents and young adults are scarce. Moreover, perspectives of adolescents and young adults on self-experienced communicative participation, which can lead to the development of a measurement instrument, have not yet been identified. What this paper adds to existing knowledge This study is about the self-experienced communicative participation situations mentioned by adolescents and young adults themselves. It presents 37 concepts describing communicative participation that were identified from communicative participation situations mentioned by adolescents and young adults themselves. What are the potential or actual clinical implications of this work? This study provides more insight into concepts that describe communicative participation from the perspectives of adolescents and young adults. The results will be used to develop an item bank measuring communicative participation in the target population.

Why do volunteers participate in phase I clinical trials? An exploratory study

Study goal: This study was carried out to answer the following research question: which motivation do healthy volunteers have to participate in phase I clinical trials? - Methods: A literature search was done through Google Scholar and Academic Search Premier, followed by three interviews with volunteers who had recently concluded their participation in a (non-commercial) phase I trial. - Results: Our literature search revealed mainly commercial motives for volunteers to participate in phase I clinical trials. The interviews (with volunteers in a non-commercial trial) showed that other factors may also play a decisive role, such as: (1) wish to support the investigator (2) wish to contribute to science, (3) access to more/better health care (4) sociability: possibility to relax and to communicate with other participants (5) general curiosity. Precondition is that risks and burden are deemed acceptable. - Conclusions: financial remuneration appears to be the predominant motive to participate voluntarily in a clinical trial. Other reasons were also mentioned however, such as general curiosity, the drive to contribute to science and the willingness to help the investigator. In addition, social reasons were given such as possibility to relax and to meet other people. Potential subjects state that they adequately assess the (safety) risks of participating in a trial as part of their decision process.

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