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.

Understanding Youth's Lived Experience of Anxiety through Metaphors: A Qualitative, Arts-Based Study.

Living with anxiety can be a complex, biopsychosocial experience that is unique to each person and embedded in their contexts and lived worlds. Scales and questionnaires are necessary to quantify anxiety, yet these approaches are not always able to reflect the lived experience of psychological distress experienced by youth. Guided by hermeneutic phenomenology, our research aimed to amplify the voices of youth living with anxiety. Fifty-eight youth living with anxiety took part in in-depth, open-ended interviews and participatory arts-based methods (photovoice and ecomaps). Analysis was informed by van Manen's method of data analysis with attention to lived space, lived body, lived time, and lived relationships, as well as the meanings of living with anxiety. Youth relied on the following metaphors to describe their experiences: A shrinking world; The heavy, heavy backpack; Play, pause, rewind, forward; and A fine balance. Overall, youth described their anxiety as a monster, contributing to feelings of fear, loss, and pain, but also hope. The findings from this study can contribute to the reduction of barriers in knowledge translation by encouraging the use of narrative and visual metaphors as a communicative tool to convey youth's lived experience of anxiety to researchers, clinicians, and the public.

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.