Accessing mental health services for a child living with anxiety: Parents' lived experience and recommendations.

BACKGROUND: Little research attention has been given to understanding the lived experience of parents who access mental health services in the context of child anxiety disorders. This paper reports on findings specific to parents' lived experience of accessing services for their child living with anxiety and the recommendations they provided for improving access. METHODS: We used the qualitative research approach of hermeneutic phenomenology. The sample included 54 Canadian parents of youth living with an anxiety disorder. Parents took part in one semi-structured and one open-ended interview. We used a 4 staged data analysis process informed by van Manen's approach and Levesque and colleagues' framework of access to healthcare. RESULTS: The majority of parents reported being female (85%), white (74%), and single parents (39%). Parents' ability to seek and obtain services was affected by not knowing when or where to access services, having to learn to navigate the system, limited availability of services, lack of timely services and interim supports, limited financial resources, and clinicians' dismissal of parental concerns and knowledge. Provider (ability to listen), parent (willingness to participate in therapy), child (same race/ethnicity as provider), and service characteristics (cultural sensitivity) influenced whether parents perceived services as approachable, acceptable, and appropriate. Parents' recommendations focused on: (1) improving the availability, timeliness, and coordination of services, (2) providing supports for parents and the child to facilitate obtaining care (education, interim supports), (3) improving communication with and among healthcare professionals, (4) the need to recognize parents' experience-based knowledge, and (5) encouraging parents to take care of themselves and advocate for their child. CONCLUSIONS: Our findings point to possible avenues (parents' ability, service characteristics) that can be targeted to improve service access. As experts on their situation, parents' recommendations highlight priority needs of relevance to health care professionals and policymakers.

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 Wicked Problem of Stigma for Youth Living With Anxiety.

Anxiety disorders typically emerge in childhood and, if left untreated, can lead to poor health and social outcomes into adulthood. Stigma contributes to the burden of mental illness in youth. Mental health stigma has been conceptualized as a wicked problem and efforts to address this complexity require a greater understanding of how stigma operates in the lives of youth. Fifty-eight youth in Manitoba, Canada aged 10 to 22 years and living with anxiety took part in the study. Data collection involved in-depth interviews and arts-based methodologies. Youth living with anxiety faced stigma at three levels: (a) interpersonal, (b) intrapersonal, and (c) structural. Stigma held by others, internalized by youth and embedded in social institutions led to compromised relationships with family and peers, low self-esteem and self-efficacy, reduced help-seeking, and discrimination in school, workplace and health care settings. Implications and potential strategies for addressing these levels of stigma are discussed.

The experience of the self in Canadian youth living with anxiety: A qualitative study.

BACKGROUND: Anxiety can create serious disruption in the life and mind of youth who are affected. Youth living with anxiety suffer a wealth of physical and psychological challenges, yet little is known about how anxiety influences the sense of the self. The purpose of this research was to explore the experience of the self in a sample of Canadian youth living with anxiety. MATERIALS AND METHODS: The qualitative research approach of hermeneutic phenomenology was used. The sample consisted of 58 Canadian youth with anxiety, 44 females and 14 males between the ages of 10 and 22. Youth took part in open-ended interviewing, ecomaps, and photovoice. Data analysis followed a staged process, informed by Max van Manen. All sources of data were included in the analysis to form thematic statements. RESULTS: Entering into the lifeworld of youth revealed that they suffered deeply. A fractured sense of self underlined their experience, setting up for a great deal of self-scrutiny and a lack of self-compassion. They experienced a profound sense of responsibility for others at the loss of being-there-for-oneself. Navigating their social sphere presented an additional challenge. However, youth were genuinely interested in self-discovery through awareness and reflection. CONCLUSIONS: The phenomenological accounts by youth on living with anxiety reinforce the challenges they experienced within themselves that give rise to a great deal of inner turmoil. Care and support to youth with anxiety requires an understanding of the ways in which the self may be fractured by their experiences with anxiety. Providing young people with an opportunity to share with others who had similar lived experiences can serve to contribute to a sense of healing for youth, while also providing a safe space in which young people can let down their guard and openly acknowledge or share their experiences without fear of stigmatization.

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.

Advancing patient engagement: youth and family participation in health research communities of practice.

PLAIN ENGLISH SUMMARY: The involvement of patients in health research has resulted in the development of more effective interventions and policies in healthcare that respond to the needs of healthcare users. This article examines how working with youth and their families as co-researchers in health research communities of practice (CoPs), rather than just as participants, can benefit all involved. Health research (CoPs) promote an environment in which co-researchers have the opportunity to do more than just participate in the data collection phase of the research process. As co-researchers, youth and their families are able to participate, learn, and contribute to knowledge and building relationships that are designed to innovate and improve healthcare systems. However, in order to ensure engagement of youth and their families in health research that they find meaningful and rewarding, three factors have been identified as important parts of the process: promoting identity, building capacity, and encouraging leadership skills. ABSTRACT: Background Patient engagement in health research is becoming more popular as it can lead to evidence for developing the most effective interventions, policy and practice recommendations. Models of patient engagement have been evolving over the past four decades including health research communities of practice (CoPs). Health research CoPs help to break down professional barriers and enhance knowledge sharing for the purpose of improving health outcomes. In this article we consider health research CoPs when youth and their families are involved. Main body As part of an ongoing research program, we identify how insights about youth and their families' views are taken into account as well as their specific roles in health research CoPs. We have worked with youth and their families not only as participants in health research, but instead as co-researchers in health research CoPs. As co-researchers, youth and their families are able to participate, learn, and contribute to knowledge and building relationships that are designed to innovate and improve healthcare systems. Promoting and creating the space for identity, capacity building, and leadership is integral to the engagement of youth and their families in health research in a way that they consider meaningful and rewarding. Conclusions Youth and families can play stronger and more meaningful roles in health research by adopting a CoPs approach. Further examination of the internal structures and connections between youth and families as well other actors (i.e., with service providers and special knowledge holders) within emerging health research CoPs would be advantageous for developing greater understanding and best practices around engaging youth and families in health research.

"People try and label me as someone I'm not": The social ecology of Indigenous people living with HIV, stigma, and discrimination in Manitoba, Canada.

Indigenous peoples (First Nations, Inuit, and Métis) are currently overrepresented in the HIV epidemic in Canada and are infected at a younger age than those who are not Indigenous. This article presents our findings on the stigma and discrimination (as well as related themes such as disclosure) experienced by Indigenous people who contracted HIV in their youth and live in urban and non-urban settings in Manitoba, Canada. The findings were derived from a qualitative study that sought to understand the experiences and needs of Indigenous people living with HIV (including AIDS). We situate such experiences within a social ecological framework towards developing a better structural understanding of the impacts of stigma and discrimination on the lives of Indigenous people who are HIV positive. Stigma and discrimination caused barriers for Indigenous people living with HIV through inhibiting their ease of access to supports including family, peers, community, and long- and short-term health services. Creative forms of outreach and education that are culturally appropriate and/or rooted in culture were considered to be possibly impactful ways of reducing stigma and discrimination at the community level. Learning from communities who are successfully managing stigma also showed promise for developing new programming.

A qualitative study on the intersectional social determinants for indigenous people who become infected with HIV in their youth.

BACKGROUND: Indigenous young people are currently highly overrepresented in the HIV epidemic in Canada, especially in the Prairie Provinces, such as Manitoba. Understanding HIV-vulnerability in Indigenous peoples must begin with understanding that social determinants are intersectional and linked to the historical legacy of European colonization. In this paper findings that detail the influence of the intersectional social determinants on Indigenous people who become infected with HIV in their youth are presented. METHODS: The qualitative research design of phenomenology was used as it afforded the opportunity to understand Indigenous young people from their frames of reference and experiences of reality, resulting in a phenomenological understanding of their perspectives and experiences of the early years of living with HIV. A total of 21 Indigenous young people took part open-ended interviews. RESULTS: The stories that the Indigenous young people shared revealed their deeply interconnected social worlds, and how social determinants including abuse, trauma, being part of the child welfare system, and housing and food security were connected throughout various stages of their lives. Such stages included childhood, adolescence and young adulthood (the time of HIV infection), and later adulthood for older participants with the social determinants having multiple influences on their health trajectories. CONCLUSIONS: The findings highlight the need for policies and programs that are broadly focused, addressing multiple social determinants together. Overall, there needs to be more emphasis on the multiple social determinants in the life situations of all Indigenous youth. Reducing the health and social disparities in Indigenous youth is key to reducing the number of young Indigenous people diagnosed with HIV. The findings also shed light on the importance of listening to young Indigenous people who have experienced HIV diagnosis and life following diagnosis.

The meanings young people assign to living with mental illness and their experiences in managing their health and lives: a systematic review of qualitative evidence.

BACKGROUND: It is estimated that less than 25% of young people in need of treatment for mental illness receive specialized services, and even fewer receive a diagnosis by their doctor. These findings are troubling given that living with a mental illness can have a significant impact on a young person's life, the lives of his/her family members, the young person's community and society generally. OBJECTIVE: The objective of this systematic review was to synthesize the best available qualitative evidence on the meanings young people assign to living with mental illness and their experiences in managing their health and lives. INCLUSION CRITERIA: The current review considered both interpretive and critical research studies that drew on the experiences of young people with mental illness. SEARCH STRATEGY: The search for published studies included the following databases: MEDLINE, CINAHL, Social Sciences Full Text, PsycINFO, Social Work Abstracts, Sociological Abstracts, Embase, Social Services Abstracts, Child Development and Adolescent Studies, Scopus, Web of Science and Academic Search Complete. The search for unpublished studies included conference proceedings and ProQuest Dissertations and Theses Database. METHODOLOGICAL QUALITY: Each paper was assessed independently by two reviewers for methodological quality. The Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI) was used to appraise the methodological quality of the articles. DATA EXTRACTION: Qualitative data were extracted from papers included in the review using the standardized data extraction tool from JBI-QARI. DATA SYNTHESIS: JBI-QARI was used to pool findings based on their similarity of meaning and developed into four synthesized findings. RESULTS: Fifty-four research papers generated 304 study findings that were aggregated into nine categories. The nine categories were further aggregated into four synthesis statements: (1) A different way of being, (2) Getting through the difficult times, (3) Yearning for acceptance and (4) Room for improvement. CONCLUSION: Young people with mental illness experienced a range of feelings and thoughts that at times left them feeling uncomfortable in their body and world. Rejection by family and friends was a common fear. The changes experienced by young people required them to use a variety of strategies that were both negative and positive. The challenges young people faced in seeking and receiving care reinforce that there is a need for improvement in mental health services for youth living with mental illness.