The centrality of disclosure decisions to the illness experience for youth with chronic conditions: A qualitative study.

The aim of this paper is to illuminate findings of disclosure experiences for youth living with chronic illness using a non-categorical approach. The findings were derived from a larger qualitative study framed by social constructivist grounded theory that sought to understand youth's involvement in healthcare decision-making in the context of chronic illness. Fifty-four youth participated in the study, ranging from 9 to 24 years. Three main themes representing the youth's perspectives and experiences of disclosing chronic illness were identified: (1) disclosure is central to the illness experience; (2) spectrum of disclosure; and (3) navigating others' reactions to disclosure. The findings reinforce that more emphasis on decisions related to disclosing illness in research and clinical care for youth with chronic conditions is warranted.

How Students and Principals Understand ClassDojo: Emerging Insights.

ClassDojo is a classroom communication and behavior management app intended to "bring every family into [the] classroom" (www.classdojo.com). The features of the platform include a points system to facilitate classroom management, instant teacher-parent communication (on the individual or class level), and student portfolios (among others). While ClassDojo claims to be used in over 95% of schools in the United States, there is little known about how students or principals interact with and understand the platform's features and data. Drawing upon a mixed-methods study in a small state in the Southeastern United States, this article offers empirically driven insight into how students and principals perceive new digital education apps like ClassDojo. In particular, this analysis speaks to stakeholder attitudes toward the use of the app with regard to if and how it is mediating student-teacher and student-parent relationships. In so doing, this article offers early insights from a state-specific case into how the use of and experience of ClassDojo is situated within the broader educational experiences of students.

The lived experience of anxiety and the many facets of pain: A qualitative, arts-based approach.

Background: Findings reported in this article emerged from the study titled "Youth's Voices: Their Lives and Experiences of Living with an Anxiety Disorder." Though the initial focus of this study was not on the pain experiences of youth living with an anxiety disorder, it became apparent from the very first interviews that pain and suffering was key in the youth lived experience, permeating their everyday lives and impeding their participation and functioning in the world. Aims: The aim of this article is to highlight the ways in which pain is a central experience for young people living with an anxiety disorder. Methods: The study was approached from the qualitative research design of hermeneutic phenomenology. Fifty-eight young people who were living with anxiety disorders and their parents participated in the study. Youth took part in multiple qualitative open-ended interviews and the participatory arts-based method of photovoice. Themes were developed using van Manen's method of data analysis. Results: The overall theme emerged as "anxiety is very much about pain." The four subthemes are (1) embodied experience of anxiety: physical pain; (2) a prominent symptom of anxiety: mental-emotional pain; (3) difficult interpersonal relationships: social pain; and (4) articulating their pain. Conclusions: Use of qualitative, arts-based methodologies provided the opportunity and space for youth with anxiety to articulate their multifaceted experience with pain in their own words. This work reinforces the need for use of qualitative approaches to understanding pain experiences in young people.

Contexte: Les conclusions présentées dans ce document sont issues de l'étude intitulée « La voix des jeunes : Leurs vies et leurs expériences de la vie avec un trouble anxieux ¼. Bien que l'objectif initial de cette étude n'était pas de s'intéresser aux expériences de douleur des jeunes vivant avec un trouble anxieux, il est apparu dès les premiers entretiens que la douleur et la souffrance étaient des éléments clés de l'expérience vécue par les jeunes, qui imprégnaient leur vie quotidienne et entravaient leur participation et leur fonctionnement dans le monde.Objectifs: Le présent document vise à mettre en lumière les façons dont la douleur constitue une expérience de premier plan pour les jeunes vivant avec un trouble anxieux.Méthodes: L'étude a été abordée à partir de la conception de la recherche qualitative de la phénoménologie herméneutique. Cinquante-huit jeunes vivant avec des troubles d'anxiété et leurs parents ont participé à l'étude. Les jeunes ont pris part à de multiples entretiens qualitatifs ouverts et à la méthode participative Photovoice, fondée sur les arts. Les thèmes ont été déterminés en utilisant le processus d'analyse des données inspiré de van Manen.Résultats: Le thème général qui s'est dégagé est le suivant : « L'anxiété est essentiellement liée à la douleur ¼. Les quatre sous-thèmes sont les suivants : (1) L'expérience de l'angoisse incarnée : La douleur physique ; (2) Un symptôme important de l'anxiété : la douleur mentale et émotionnelle ; (3) Les relations interpersonnelles difficiles : la douleur sociale ; et (4) l'articulation de leur douleur.Conclusions: L'utilisation de méthodologies qualitatives fondées sur les arts a permis aux jeunes anxieux d'exprimer leur expérience multidimensionnelle de la douleur dans leurs propres mots.Ce travail renforce la nécessité d'utiliser des approches qualitatives pour comprendre les expériences de la douleur chez les jeunes.

How do peers promote social inclusion of children with disabilities?A mixed-methods systematic review.

Purpose: This mixed-methods systematic review synthesized findings from studies published between January 1, 2006 and July 31, 2018 on the social inclusion experiences of children with and without disabilities, as viewed from their own perspective, with a focus on how typically developing peers promote social inclusion.Method: Forty-five studies met the inclusion criteria. Data from included studies were synthesized by means of content analysis.Results: The findings detail the inner social inclusion experiences (e.g., feeling included, different) of children with disabilities and provide information regarding the influence of disability type (e.g., physical, social, affective) on typically developing peers' responses (e.g., acceptance vs. rejection), peers' explanations for social inclusion/exclusion, and peers' relationships with children with disabilities. Barriers to social inclusion, supports, as well as strategies used to promote social inclusion, as perceived by peers and children with disabilities, are also reported.Conclusion: The findings of this review provide evidence that despite society's efforts to promote social inclusion, children with disabilities continue to report feeling lonely and excluded, having limited contact socially outside of home, and encountering systemic barriers (e.g., bullying, discrimination). More research on the social inclusion experiences of children with disabilities beyond educational settings is needed, such as in the contexts of recreation and leisure, community, and employment.Implications for rehabilitationThe perspectives of children with and without disabilities need to be integrated in activities and programs aimed at promoting social inclusion.Teaching social inclusion strategies to children with and without disabilities is needed to help them deal with barriers.In addition to educational settings, rehabilitation clinicians need to promote social inclusion strategies in other contexts such as recreation and leisure, community, and employment contexts.

An E-Learning Adaptation of an Evidence-Based Media Literacy Curriculum to Prevent Youth Substance Use in Community Groups: Development and Feasibility of REAL Media.

BACKGROUND: There is a need for evidence-based substance use prevention efforts that target high school-aged youth that are easy to implement and suitable for dissemination in school and community groups. The Youth Message Development (YMD) program is a brief, four-lesson, in-person curriculum that aims to prevent youth substance use through the development of youth media literacy. Specifically, YMD aims to increase understanding of advertising reach and costs, along with the techniques used to sell products; develop counterarguing and critical thinking skills in response to advertisements; and facilitate application of these skills to the development of youth-generated antisubstance messages. Although YMD has demonstrated evidence of success, it is limited by its delivery method and focus on alcohol and smoking. OBJECTIVE: Study objectives were two-fold: (1) to adapt the YMD curriculum to a self-paced, interactive, electronic-learning (e-learning) format and expand its content to cover alcohol, combustible cigarettes, e-cigarettes, smokeless tobacco, marijuana, and prescription drugs, and (2) to test the feasibility of the adapted curriculum in partnership with a national youth organization. METHODS: An iterative process was employed in partnership with the 4-H youth development organization and a technology developer and consisted of six phases: (1) focus groups to guide adaptation, (2) adaptation to an e-learning format renamed REAL media, (3) pilot-testing of the REAL media prototype to determine feasibility and acceptability, (4) program revisions, (5) usability testing of the revised prototype, and (6) final revisions. Focus groups and pilot and usability testing were conducted with 4-H youth club members and adult club leaders. RESULTS: Focus group feedback guided the build of an e-learning prototype of REAL media, which consisted of five online levels and interactive content guided by a mix of narration and on-screen text. Results of a pilot test of the prototype were neutral to positive, and the program was refined based on end-user feedback. An independent usability test indicated that youth 4-H members felt favorably about navigating REAL media, and they reported high self-efficacy in applying skills learned in the program. Additional refinements to the program were made based on their feedback. CONCLUSIONS: The iterative build process involving the end user from the outset yielded an overall successful technology-driven adaptation of an evidence-based curriculum. This should increase the likelihood of effectively impacting behavioral outcomes as well as uptake within community organizations.