Worth a thousand words?: advantages, challenges and opportunities in working with photovoice as a qualitative research method with youth and their families

Photovoice, a popular method in qualitative participatory research, involves individuals taking photographic images to document and reflect on issues significant to them. Having emerged in the mid-1990s, its popularity has been related to several advantages of working with the method associated with enhanced forms of expression and accessibility, as well as a strong alignment with participatory research principles. We explore the advantages, challenges and opportunities in working with photovoice in qualitative research through gleaning insights from the literature and from studies that were part of IN•GAUGE®, a research program that has used photovoice and other visual methods for doing research with youth and families for over 15 years. The insights provide guidance for the evolution of photovoice and the development of ethical protocol assessments that are necessary for enhancing the participatory and empowering aspects of photovoice.Bei Photovoice, einer eingeführte Methode im Rahmen partizipativer Forschung, nutzen Individuen Fotos, um für sie relevante Themen zu dokumentieren und zu reflektieren. Entwickelt Mitte der 1990 Jahre und eng verbunden mit partizipativen Prinzipien hat sich Photovoice bewährt, um Ausdrucksweisen von und Zugangsweisen zu spezifischen Untersuchungsgruppen besser als vorher zu unterstützen. In diesem Beitrag befassen wir uns mit Herausforderungen und Optionen der Nutzung von Photovoice für qualitative Studien durch die Diskussion relevanter Literatur und von Studien, die im Rahmen von IN•GAUGE® durchgeführt wurden, einem Forschungsprogramm, in dem Photovoice und anderer visuelle Verfahren über 15 Jahre angewandt wurden in Untersuchungen mit Jugendlichen und ihren Familien. Vor diesem Hintergrund identifizieren wir Potenziale für die Weiterentwicklung von Photovoice und für die Konzeption ethischer Richtlinien, die erforderlich sind, um die partizipativen und Empowermentanteile des Verfahrens zu stärken

A Day in the Life of a Young Person with Anxiety: Arts-Based Boundary Objects Used to Communicate the Results of Health Research

In diesem Beitrag veranschaulichen wir, wie wir Grenzobjekte genutzt haben, um Ergebnisses der Studie Youth's Voices zu kommunizieren, die die Untersuchung von Angsterfahrungen junger Menschen zum Ziel hatte. Insgesamt interviewten wir 58 Jugendliche mit Angststörungen unter Hinzuziehung des Photovoice-Verfahrens. Themen, die im Zuge der Datenauswertung eruiert wurden, wurden dann in Grenzobjekte transformiert, in unserem Fall in eine Serie von Videovignetten mit tänzerischen Umsetzungen dieser Themen. Die Videovignetten führten zu bedeutungsvollen Interpretationen der Erfahrungen der Jugendlichen und eröffneten wichtige Potenziale für Empathie und gegen Stigmatisierung. Sie halfen, deren Erlebensweise einem breiteren Publikum – Politiker/innen, Praktiker/innen, Forscher/innen und der interessierten Öffentlichkeit – zu kommunizieren.In this article we outline the creation of boundary objects as just one of the means to communicate the results of the Youth's Voices research study that sought to understand young people's experiences of living with anxiety. Fifty-eight young people living with anxiety took part in open-ended interviews complemented by photovoice. As one knowledge translation strategy, themes emerging from the data were transformed into boundary objects of a series of video vignettes representing dance interpretations of the themes. The video vignettes revealed meaningful interpretations of the young people's experiences, creating the potential for enhanced empathy and understanding, and reduced stigma for young people living with anxiety. The creation of boundary objects affords the opportunity to communicate the experiences of young people living with anxiety to a wider audience of policy makers, health care practitioners, researchers, as well as the general community

Creating Space for Youth Voice: Implications of Youth Disclosure Experiences for Youth-Centered Research

This paper examines youth’s disclosure experiences within the context of chronic illness, drawing on examples from IN•GAUGE, an on-going research program led by Dr. Roberta L. Woodgate. Youth’s descriptions of their disclosure experiences provide valuable insights into the ways in which they use their voice in everyday life. This examination of the disclosure experiences of youth offers a lens through which the concept of youth voice in the research process can be understood and youth’s agency foregrounded. We present implications for researchers, ethics boards, funding agencies, and others who engage in youth-centered research, and offer alternative terminology to use in characterizing the elicitation and dissemination of youth voice in the research process. We contend that conceptualizing such efforts as giving youth voice has the potential to discredit the significant agency and autonomy that youth demonstrate in sharing their stories, perspectives, and opinions within the research context. We advocate for the adoption of the phrase of providing or creating space for youth voice, as one alternative to the phrase giving youth voice

The Six University Consortium Student Mobility Project: Promoting Conflict Resolution in the North American Context

This article focuses on the North American Conflict Resolution Program - a twenty-first century mobility consortium in which universities in Canada, Mexico, and the United States exchanged students of conflict resolution. Drawing on student perceptions and, in particular, the experiences of the universities of Manitoba and Louisville, the authors discuss the positive outcomes of mobilizing students to study conflict resolution abroad for the students themselves, for faculty members involved, for university and other communities, and for the field of conflict analysis and resolution

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

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

This work is licensed under a Creative Commons Attribution 4.0 International License.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

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

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

BackgroundLittle 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.MethodsWe 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.ResultsThe 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.ConclusionsOur 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

Navigating Ethical Challenges in Qualitative Research With Children and Youth Through Sustaining Mindful Presence

This article explores ethical challenges in qualitative research by bringing forward examples from the literature and from IN•GAUGE ® , a research program spanning over 15 years and focusing on the significance of multiple perspectives and the value of gauging the health needs of young people and their families. In addition to exploring the ethical challenges in working with children and youth in research, we make the case that ethical considerations need to extend beyond research ethics boards protocols and present “sustaining mindful presence” as a conceptual frame practical guide for working through ethical challenges in qualitative research. We contend that greater participation of research subjects, including children and youth, is the way forward for developing more holistic and effective approaches to ethics within research institutions

Worth a Thousand Words? Advantages, Challenges and Opportunities in Working with Photovoice as a Qualitative Research Method with Youth and their Families

Photovoice, a popular method in qualitative participatory research, involves individuals taking photographic images to document and reflect on issues significant to them. Having emerged in the mid-1990s, its popularity has been related to several advantages of working with the method associated with enhanced forms of expression and accessibility, as well as a strong alignment with participatory research principles. We explore the advantages, challenges and opportunities in working with photovoice in qualitative research through gleaning insights from the literature and from studies that were part of IN•GAUGE®, a research program that has used photovoice and other visual methods for doing research with youth and families for over 15 years. The insights provide guidance for the evolution of photovoice and the development of ethical protocol assessments that are necessary for enhancing the participatory and empowering aspects of photovoice. URN: http://nbn-resolving.de/urn:nbn:de:0114-fqs17012