Papers by Katherine Boydell
International Journal of Environmental Research and Public Health
This study used animated film to translate narratives of refugees and mental health into accessib... more This study used animated film to translate narratives of refugees and mental health into accessible material aimed at enhancing empathy and understanding. It focuses on the use of short animated films in series one and two of the Woven Threads catalogue. Series one shared moments of hope in a refugee’s journey, whilst series two focused on people living with mental health challenges. This research was designed to understand the responses to viewing for people who watch these animations. A mixed-method design was used via an online Qualtrics platform that asked respondents to view two short animated films, one from the refugee series and one from the mental health series. 364 members of the general public viewed and responded to the refugee film and 275 responded to the mental health film. The platform collected both quantitative and qualitative data. Survey responses indicated that the majority of viewers found the films challenged public misconceptions about refugees and individual...
International Journal of Environmental Research and Public Health
Mental health lived-experience research illuminates the perspectives and experiences of people wh... more Mental health lived-experience research illuminates the perspectives and experiences of people who live with mental illness. However, little is known about how useful people with lived experience of mental illness/distress might find lived-experience research, nor what the best formats are to bring it to their attention. This paper describes the STELLER study (Supporting the Translation into Everyday Life of Lived-Experience Research), which explores the translation of lived-experience research in the lives of people living with mental illness. Our aim was to use a design thinking approach to develop a range of user-friendly formats to disseminate lived-experience research. A staged design thinking approach was used to develop a translation strategy for lived-experience research. We explored empathy via consumer consultation to understand their perspectives on lived-experience research, refined the design aim, research questions and generated ideas with consumers and mental health p...
The Journal of Mental Health Training, Education and Practice
Purpose This paper aims to explore the use of lived experience research in peer work. Design/meth... more Purpose This paper aims to explore the use of lived experience research in peer work. Design/methodology/approach A suite of user-friendly and engaging lived experience research resources was introduced to consumers by peer workers. In-depth interviews were conducted with 33 consumer participants and five peer workers about their experiences. The data were analysed using qualitative content analysis. Findings The role of the peer workers appeared critical in ensuring that participants, despite their varied needs, preferences and backgrounds, derived optimum benefit from each resource. Features in resource delivery that promoted a positive experience included presenting the resources in the context of an existing relationship, providing clear explanations, going through resources together, encouraging reflection, taking enough time; and flexible delivery. Peer workers viewed the resources as potentially useful in their everyday peer work and as a valuable addition to their peer work ...
International Journal of Environmental Research and Public Health, 2021
People with intellectual disability (ID) experience higher rates of mental illness and reduced ac... more People with intellectual disability (ID) experience higher rates of mental illness and reduced access to appropriate care and treatment. Tailored electronic mental health (eMH) programs offer opportunities to address these disparities. The aim of this study is to examine whether a fully automated and self-guided eMH program tailored to the needs of people with ID can reduce symptoms of anxiety and depression and improve daily functioning in people with borderline-to-mild ID. Australians with borderline-to-mild ID, aged 16 years and older with mild-to-moderate depression and/or anxiety symptoms will be eligible to participate with the help of a nominated carer, if necessary. A randomised controlled trial with a sample size of 150 participants divided into treatment and waitlist control arms will be conducted. Participants randomised to the intervention group will have full access to the Healthy Mind program for eight weeks. The waitlist control group will gain full access to the prog...
Australian Journal of Human Rights, 2020
ABSTRACT Refugees often come from countries with histories of human rights violations and can fac... more ABSTRACT Refugees often come from countries with histories of human rights violations and can face multiple challenges in building a new life in Australia. Little is known about the specific experiences of those who also live with a disability, and how this may impact their rights to health. We present an intersectional approach to using arts-based research to bring to light the embodied experiences of these people, who live at the intersection of multiple axes of marginalisation. Bringing together lived experience of displacement and disability, with interdisciplinary researchers and a range of clinicians and service providers, we present an overview of the issues faced by refugees with disabilities in Australia. We then discuss how arts-based research could help to generate academic and policy discourses which are more attentive to the needs, priorities and identities of refugees with disabilities.
BMJ Open, 2022
ObjectiveTo use the digital story completion method to prompt participants to describe thoughts, ... more ObjectiveTo use the digital story completion method to prompt participants to describe thoughts, fears and mental health experiences in response to a story stem about COVID-19, to capture a specific sociohistoric moment.DesignWe used digital story completion, a qualitative research method, to gather narratives from Australians coping with physical distancing and social restriction measures. Our reflexive thematic analysis of the data was underpinned by a constructionist approach to reflect the importance of social context in understanding health experiences.SettingAustralia.Participants52 people living in Australia (aged 18 years and over).ResultsFour meta-themes were prevalent across 52 stories submitted: (1) expressions of mental distress linked to COVID-19; (2) various coping strategies offered by characters in stories; (3) narratives outlining social support offered to alleviate distress; and (4) specialised COVID-19 vocabulary.ConclusionWe cautiously propose that points of conv...
dance on pathways to care in first episode psychosis. Viewing the co-creation of a research-based... more dance on pathways to care in first episode psychosis. Viewing the co-creation of a research-based dance as collective activity attends to the processual aspects of an individual's experiences. It research into concrete form and to produce generalizable abstract knowledge from the empirical research findings. Thus, through the techniques of movement, metaphor, voice-over, and music, the characterization of experience through dance was personal and generic, individual and collective, particular and trans-situational. The dance performance allowed us to address the visceral, emotional, and visual aspects of our research which are frequently invisible in traditional academia. Table of Contents 1. Background 1.1 A word about arts-based approaches in health research 1.2 The study: Pathways to care for youth experiencing a first episode of psychosis
Aim: The aim of this paper is to provide a descriptive review of published qualitative research s... more Aim: The aim of this paper is to provide a descriptive review of published qualitative research studies on first episode psychosis (FEP). Methods: A review was undertaken to describe the findings of qualitative studies in early psychosis. Keyword searches in Medline, CINAHL, ASSIA, PsychINFO databases, as well as manual searches of other relevant journals and reference lists of primary papers, were conducted. Results:Thirty-one qualitative papers (representing 27 discrete studies) were identified. The majority reported research concerning young people based in community settings. The research studies were organized according to the following generic social processes: (i) achieving identity; (ii) acquiring perspectives; (iii) doing activity; and, (iv) experiencing relationships. The papers reviewed are based on first-person accounts obtained from individuals who have experienced FEP, their family members and service providers. Conclusion: This descriptive review contributes to our un...
Frauen mit Beeintrachtigungen erleben oft Teilhabebarrieren infolge langdauernder Fehleinschatzun... more Frauen mit Beeintrachtigungen erleben oft Teilhabebarrieren infolge langdauernder Fehleinschatzungen uber ihre Identitat, gefolgt von negativen Effekten fur ihre Gesundheit, ihr Einkommen und ihren Zugang zu Bildung und Arbeit. In ruckliegenden Arbeiten wurde bereits gezeigt, dass Fotos, die mittels des Photovoice-Verfahrens produziert wurden, halfen, Einstellungs- und Umgebungsbarrieren abzubauen, allerdings wurde die Methode kaum mit Blick auf moglichen offentlichen Impact genutzt. In diesem Protokollpapier haben wir Prinzipien miteinander verbunden, die auf feministische Theorien, die Photovoice-Methode und integrierte Wissensvermittlungspraktiken zuruckgehen, um 1. ausstellungsreife Fotografien zur Identitat der Forschungsteilnehmerinnen zu generieren, 2. zur Diskussion von und Einsicht in Inklusion fur beeintrachtige Frauen beizutragen und 3. eine Ausstellung zu initiieren, um zu verstehen, welchen Impact die Fotos auf das Publikum und auf diskriminierende Barrieren haben konne...
Forum Qualitative Social Research, 2016
Ganzkorper-Kartografien wurden fur Forschungszwecke erstmals in einem Projekt genutzt, in dem es... more Ganzkorper-Kartografien wurden fur Forschungszwecke erstmals in einem Projekt genutzt, in dem es um einen Vergleich von weiblicher Identitat und Reproduktion zwischen landlichen Regionen in Jamaika und in Grosbritannien ging. Danach wurde dieser Ansatz im Rahmen eines in Sudafrika durchgefuhrten Workshops weiterentwickelt mit dem Ziel, den Erfahrungen HIV-positiver Menschen zum Ausdruck zu verhelfen, der Stigmatisierung entgegenzuwirken und die Forderung nach der Bereitstellung anti-retroviraler Medikamente zu unterstutzen. Bei einer Ganzkorper-Kartografie werden die Korperumrisse einer Person nachgezogen, um einen lebensgrosen Umriss zu generieren, der innerhalb eines kreativen und reflexiven Prozesses gefullt wird, sodass ein Bild entsteht, das die multiplen Aspekte verkorperlichter Erfahrung reprasentieren soll. Es handelt sich bei Korper-Kartografien um eine qualitative, genauer im Bereich partizipativer Ansatze angesiedelte Methodik, deren Aufgabe es ist, Wissen zu generieren ...
Panel Travel diaries as a source for creative constructions of the past and the present: The Edwa... more Panel Travel diaries as a source for creative constructions of the past and the present: The Edward Bliss Emerson Caribbean diary (1831-1832).
Arts-based health research has increased dramatically in recent years. Many academics are collabo... more Arts-based health research has increased dramatically in recent years. Many academics are collaborating across disciplines including health and social sciences, humanities and the arts. Using artistic modes of research representation allows for a different way of participating and may enhance the likelihood of making an impact (negative or positive) on the audience and, consequently, on artists and researchers. This paper focuses on the concept of ‘dangerous emotional terrain’, used to describe the potential negative impacts of using the arts, in this case dance, in research dissemination. We focus on a seldom-explored area – the impact on artists embodying research results of difficult lived experiences. The potential for harm to performers engaging in arts-based research requires consideration. Actors and other artists and their experiences of depicting suffering and pain, for example, remain relatively unexplored. What are our responsibilities to performers taking on this role? W...
LEARNing Landscapes, 2019
In this commentary, educator and author Katherine Boydell reflects on her journey to incorporate ... more In this commentary, educator and author Katherine Boydell reflects on her journey to incorporate art genres in the research process as a knowledge translation strategy for producing and disseminating research-informed knowledge. She highlights the need to move beyond descriptions of form and content to grapple with the unique methodological, theoretical, and ethical challenges of working with research participants, artists, and audience members engaging in this work. She describes some of her current arts-based research and identifies the current pressures to conform to expectations regarding “what counts” in academia and concludes with future suggestions to advance arts-based knowledge translation.
Concepts, Methodologies, Tools, and Applications
Although a great deal has been written about the potential for telemedicine to increase access to... more Although a great deal has been written about the potential for telemedicine to increase access to care, applications in paediatrics are sparse. This chapter details how one paediatric telepsychiatry program has facilitated the creation of integrated healthcare solutions in patient psychiatric care for children and youth in remote and rural communities. It demonstrates how the telepsychiatry model of healthcare service delivery has improved access, enhanced capacity, and promoted knowledge exchange in rural communities. A case study is used to highlight theoretical and empirical research on the value of televideo information technology in mental healthcare and its impact on the healthcare stakeholders who utilize this technology. An overview of the clinical, education, and evaluation components of the program is outlined, with a focus on knowledge translation and exchange as the underpinning foundation to the success of the program.
PLoS ONE, 2012
Background: The risks and benefits of infection prophylaxis are uncertain in children with cancer... more Background: The risks and benefits of infection prophylaxis are uncertain in children with cancer and thus, preferences should be considered in decision making. The purpose of this report was to describe the attitudes of parents, children and healthcare professionals to infection prophylaxis in pediatric oncology. Methods: The study was completed in three phases: 1) An initial qualitative pilot to identify the main attributes influencing the decision to use infection prophylaxis, which were then incorporated into a discrete choice experiment; 2) A think aloud during the discrete choice experiment in which preferences for infection prophylaxis were elicited quantitatively; and 3) Indepth follow up interviews. Interviews were recorded verbatim and analyzed using an iterative, thematic analysis. Final themes were selected using a consensus approach. Results: A total of 35 parents, 22 children and 28 healthcare professionals participated. All three groups suggested that the most important factor influencing their decision making was the effect of prophylaxis on reducing the chance of death. Themes of importance to the three groups included antimicrobial resistance, side effects of medications, the financial impact of outpatient prophylaxis and the route and schedule of administration. Conclusion: Effect of prophylaxis on risk of death was a key factor in decision making. Other identified factors were antimicrobial resistance, side effects of medication, financial impact and administration details. Better understanding of factors driving decision making for infection prophylaxis will help facilitate future implementation of prophylactic regiments.
PLoS ONE, 2012
Background: Bacterial and fungal infections in pediatric oncology patients cause morbidity and mo... more Background: Bacterial and fungal infections in pediatric oncology patients cause morbidity and mortality. The clinical utility of antimicrobial prophylaxis in children is uncertain and the personal utility of these agents is disputed. Objectives were to use a discrete choice experiment to: (1) describe the importance of attributes to parents and healthcare providers when deciding between use and non-use of antibacterial and antifungal prophylaxis; and (2) estimate willingness-to-pay for prophylactic strategies. Methods: Attributes were chances of infection, death and side effects, route of administration and cost of pharmacotherapy. Respondents were randomized to a discrete choice experiment outlining hypothetical treatment options to prevent antibacterial or antifungal infections. Each respondent was presented 16 choice tasks and was asked to choose between two unlabeled treatment options and an opt-out alternative (no prophylaxis). Results: 102 parents and 60 healthcare providers participated. For the antibacterial discrete choice experiment, frequency of administration was significantly associated with utility for parents but not for healthcare providers. Increasing chances of infection, death, side effects and cost were all significantly associated with decreased utility for parents and healthcare providers in both the antibacterial and antifungal discrete choice experiment. Parental willingness-to-pay was higher than healthcare providers for both strategies. Conclusion: Chances of infection, death, side effects and costs were all significantly associated with utility. Parents have higher willingness-to-pay for these strategies compared with healthcare providers. This knowledge can help to develop prophylaxis programs.
Physical & Occupational Therapy In Pediatrics, 2006
A group of 100 adults and 190 youth who have cerebral palsy (CP), spina bifida (SB), and acquired... more A group of 100 adults and 190 youth who have cerebral palsy (CP), spina bifida (SB), and acquired brain injuries from childhood (ABIc) participated in a multi-method study focused on the transition to adult health care. The results show that 95% of youth and 61% of adults were living with their parents; 23% of the youth and 55% of adults were employed; and 60% of youth and 42% of adults reported “excellent” or “very good” health. The lowest health scores were reported by adults with SB. These findings provide a starting point for examining health issues specific to youth and young adults with CP, SB, and ABIc.
Physical & Occupational Therapy In Pediatrics, 2009
The transition to adulthood is extremely difficult for individuals with disabilities. We sought t... more The transition to adulthood is extremely difficult for individuals with disabilities. We sought to explore the specific issue of transition to adult-oriented health care in a Canadian context. We conducted semi-structured individual interviews with 15 youth and 15 adults with cerebral palsy, spina bifida, and acquired brain injuries of childhood, and their parents (n = 30). Respondents discussed their health care services, their experience with clinical transition, and contributing factors. We analyzed the transcripts using qualitative methods. All participants identified challenges in transition, including: lack of access to health care; lack of professionals' knowledge; lack of information and uncertainty regarding the transition process. Two solutions were identified: early provision of detailed information and more extensive support throughout the clinical transition process. The challenges of clinical transition were universal. More extensive information and support is needed during transition to ensure an efficient move to appropriate adult-oriented health care.
Implementation Science, 2008
Background: Children with emotional and behavioural disorders should be able to count on receivin... more Background: Children with emotional and behavioural disorders should be able to count on receiving care that meets their needs and is based on the best scientific evidence available, however, many do not receive these services. Implementation of evidence-based practice (EBP) relies, in part, on the research utilization practices of mental health care providers. This study reports on a survey of research utilization practices among 80 children's mental health (CMH) service provider organizations in Ontario, Canada. Methods: A web-based survey was distributed to 80 CMH service provider organizations, to which 51 executive directors and 483 children's mental health practitioners responded. Research utilization was assessed using questions with Likert-type responses based on the Canadian Health Services Research Foundation's Four-A's approach: access, assess, adapt, apply. Results: There was general agreement among executive directors and practitioners regarding the capacity of their organizations to use-access, assess, adapt, and apply-research evidence. Overall, both groups rated their organizations as using research information 'somewhat well.' The low response rate to the practitioner survey should be noted. Conclusion: These findings provide a useful benchmark from which changes in reported research utilization in the Ontario CMH sector can be tracked over time, as a function of EBP training and implementation initiatives, for instance. The need to improve access to research evidence should be addressed because it relates to the eventual implementation and uptake of evidence-based practices. Communities of practice are recommended as a strategy that would enable practitioners to build capacity in their adaptation and application of research evidence.
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Papers by Katherine Boydell