Publications by authors named "Katherine M Boydell"

58 Publications

Positive Organisational Arts-Based Youth Scholarship: Redressing Discourse on Danger, Disquiet, and Distress during COVID-19.

Int J Environ Res Public Health 2021 May 25;18(11). Epub 2021 May 25.

Black Dog Institute, University of New South Wales (UNSW), Sydney, NSW 2031, Australia.

This methodological article argues for the potential of positive organisational arts-based youth scholarship as a methodology to understand and promote positive experiences among young people. With reference to COVID-19, exemplars sourced from social media platforms and relevant organisations demonstrate the remarkable creative brilliance of young people. During these difficult times, young people used song, dance, storytelling, and art to express themselves, (re)connect with others, champion social change, and promote health and wellbeing. This article demonstrates the power of positive organisational arts-based youth scholarship to understand how young people use art to redress negativity via a positive lens of agency, peace, collectedness, and calm.
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http://dx.doi.org/10.3390/ijerph18115655DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8199347PMC
May 2021

Body Mapping in a Drug and Alcohol Treatment Program: Eliciting New Identity and Experience.

Int J Environ Res Public Health 2021 05 6;18(9). Epub 2021 May 6.

School of Health, Victoria University of Wellington-Te Herenga Waka, 6012 Wellington, New Zealand.

Arts-based approaches have not been widely used in the drug and alcohol treatment sector. In this study, we examined the utility of the arts-based method of Body Mapping in an Australian residential treatment centre. Two workshops were held to explore young people's strengths and support networks in order to improve understandings of young people's lives, identities and experiences of treatment. Semi-structured follow-up interviews were conducted and triangulated with observational notes and staff interviews. We identified four major themes: engaging through art; removing the mask; revealing strengths; and a sense of achievement. Overall, this study highlighted the value of Body Mapping as an approach to engage with young people, providing rich in-depth data about their lived experiences, including in the alcohol and other drug (AOD) treatment context.
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http://dx.doi.org/10.3390/ijerph18094942DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8125476PMC
May 2021

Trauma and Mental Health Awareness in Emergency Service Workers: A Qualitative Evaluation of the Behind the Seen Education Workshops.

Int J Environ Res Public Health 2021 04 21;18(9). Epub 2021 Apr 21.

Black Dog Institute, Randwick, Sydney 2031, Australia.

Emergency service workers (ESWs) are at high risk of experiencing poor mental health, including posttraumatic stress disorder (PTSD). Programs led by ex-service organizations may play an unrecognized but critical role in mental health prevention and promotion. Behind the Seen (BTS) is an Australian ex-service organization that runs workshops to raise awareness and facilitate conversations around the mental health of ESWs. The purpose of the study is to conduct a qualitative evaluation of workshop participants' experiences, to understand the acceptability and perceived usefulness over the immediate- (within 1 month), intermediate- (6 months) and longer-terms (12 months). Participants ( = 59 ESWs) were recruited using purposive sampling across five fire and rescue services in metropolitan, regional, and rural locations. Focus groups methodology was used for data collection and data were analyzed using iterative categorization techniques. Participants reported (i) a high perceived need for education about PTSD, (ii) highly salient aspects of the presentation that made for a positive learning experience, including the importance of the lived experiences of the facilitators in the learning process, (iii) key features of changes to intentions, attitudes, and behavior, and (iv) major aspects of the organizational context that affected the understanding and uptake of the program's key messages. BTS was perceived as an acceptable means of delivering mental health, PTSD, and help-seeking information to ESWs. The program is a promising candidate for scaling-up and further translation.
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http://dx.doi.org/10.3390/ijerph18094418DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8122678PMC
April 2021

Trauma and Mental Health Awareness in Emergency Service Workers: A Qualitative Evaluation of the Behind the Seen Education Workshops.

Int J Environ Res Public Health 2021 04 21;18(9). Epub 2021 Apr 21.

Black Dog Institute, Randwick, Sydney 2031, Australia.

Emergency service workers (ESWs) are at high risk of experiencing poor mental health, including posttraumatic stress disorder (PTSD). Programs led by ex-service organizations may play an unrecognized but critical role in mental health prevention and promotion. Behind the Seen (BTS) is an Australian ex-service organization that runs workshops to raise awareness and facilitate conversations around the mental health of ESWs. The purpose of the study is to conduct a qualitative evaluation of workshop participants' experiences, to understand the acceptability and perceived usefulness over the immediate- (within 1 month), intermediate- (6 months) and longer-terms (12 months). Participants ( = 59 ESWs) were recruited using purposive sampling across five fire and rescue services in metropolitan, regional, and rural locations. Focus groups methodology was used for data collection and data were analyzed using iterative categorization techniques. Participants reported (i) a high perceived need for education about PTSD, (ii) highly salient aspects of the presentation that made for a positive learning experience, including the importance of the lived experiences of the facilitators in the learning process, (iii) key features of changes to intentions, attitudes, and behavior, and (iv) major aspects of the organizational context that affected the understanding and uptake of the program's key messages. BTS was perceived as an acceptable means of delivering mental health, PTSD, and help-seeking information to ESWs. The program is a promising candidate for scaling-up and further translation.
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http://dx.doi.org/10.3390/ijerph18094418DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8122678PMC
April 2021

Lived experience research as a resource for recovery: a mixed methods study.

BMC Psychiatry 2020 09 21;20(1):456. Epub 2020 Sep 21.

Upfront Leadership, Sydney, NSW, Australia.

Background: Lived experience research is conducted by people who have experience of mental health issues and is therefore better placed than more traditional research to illuminate participants' experiences. Findings that focus on identifying enablers of recovery from a lived experience perspective have the potential to assist people in their recovery process. However, this lived experience research is often difficult to find, access and interpret. We co-produced user-friendly and engaging resources to disseminate findings from six lived experience research studies. This paper seeks to answer the research questions: a) Did exposure to lived experience research increase hopefulness for participants?; and b) How else did interacting with lived experience research resources influence participants' lives?

Methods: Thirty-eight participants were introduced to four resources of their choosing by peer workers over a four-week period. The helpfulness of resources was evaluated using mixed methods, including a quasi-experimental analysis of change in hope, an anonymous survey and in-depth interviews.

Results: Findings indicated that the resources promoted hope, but that increases in hopefulness may not be seen immediately. Other impacts include that the resources: encouraged helpful activities; provided a positive experience; increased valued knowledge; encouraged people to reflect on their journey and think constructively about mental health issues; helped people to feel less alone; and assisted people to explain their situation to others.

Conclusions: The research suggests the potential usefulness of lived experience research resources, presented in user-friendly formats, in the lives of people who experience mental health issues and implies a need to nurture this type of research.
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http://dx.doi.org/10.1186/s12888-020-02861-0DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7507671PMC
September 2020

Women and Stigma: A Protocol for Understanding Intersections of Experience through Body Mapping.

Int J Environ Res Public Health 2020 07 28;17(15). Epub 2020 Jul 28.

School of Psychiatry, Faculty of Medicine, University of New South Wales, Sydney 2031, Australia.

This paper outlines a research and dissemination protocol to be undertaken with specific groups of marginalised women in Australia. Women impacted by significant mental distress, disability, or refugee status are among society's most vulnerable and disenfranchised groups. They can experience significant social exclusion, marginalisation and stigma, associated with reduced help seeking, deprivation of dignity and human rights, and threats to health, well-being and quality of life. Previous research has assessed the experiences of discrete groups of women but has to date failed to consider mental health-refugee-disability intersections and overlaps in experience. Using body mapping, this research applies an intersectional approach to identify how women impacted by significant mental distress, disability, and refugee status negotiate stigma and marginalisation. Findings on strategies to cope with, negotiate and resist stigmatised identities will inform health policy and yield targeted interventions informed by much-needed insights on women's embodied experience of stigma. The women's body maps will be exhibited publicly as part of an integrated knowledge translation strategy. The aim is to promote and increase sensitivity and empathy among practitioners and policy makers, strengthening the basis for social policy deliberation.
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http://dx.doi.org/10.3390/ijerph17155432DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7432432PMC
July 2020

An Intervention for Mental Health Literacy and Resilience in Organized Sports.

Med Sci Sports Exerc 2021 01;53(1):139-149

Illawarra Institute for Mental Health, School of Psychology, Faculty of Social Sciences, University of Wollongong, Northfields Avenue, Wollongong, AUSTRALIA.

Purpose: In this study, we tested the effectiveness of a multicomponent sports-based program aimed at promoting early intervention, help seeking, and resilience among a sample of adolescent male sport participants.

Methods: The Ahead of the Game program comprised four intervention components and a messaging campaign. Two components targeted mental health literacy, intentions to seek and provide help, and resilience among adolescent boys. A mental health literacy program for parents and a coach education program to assist in the support of athletes' psychological needs were also included. We evaluated the program using a nonrandomized controlled trial matching two regional communities. In total, 350 sport participants (mean, 14.53 yr) were included in an intervention group, whereas 466 (mean, 14.66 yr) received usual practice in a matched control community. One hundred and eighty parents or caregivers and eight coaches also participated in the intervention components. Between-group mean differences on the primary and secondary outcomes were analyzed using linear mixed models, adjusted for clustering at club level, participant age, and socioeconomic status.

Results: Significant positive group-time interactions were found for the primary outcomes of depression and anxiety literacy, intentions to seek help from formal sources, confidence to seek mental health information, and resilience. We also found a significant positive group-time interaction for the secondary outcome of well-being. There were no group-time interactions for social distance (stigma), intentions to seek help from informal sources, implicit beliefs about adversity, perceived familial support, or psychological distress.

Conclusions: Given the high rates of sport participation worldwide and the increasing focus on mental health in this domain, translation and dissemination of the program may be warranted after replication.
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http://dx.doi.org/10.1249/MSS.0000000000002433DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7737879PMC
January 2021

Resisting governance and the production of trust in early psychosis intervention.

Soc Sci Med 2020 05 20;253:112948. Epub 2020 Mar 20.

Black Dog Institute, Hospital Road, Randwick, New South Wales, NSW 2031, Australia; Institute of Medical Science, University of Toronto, 1 King's Circle, Toronto, Ontario, M5S 3K1, Canada.

Trust is vital in mental healthcare where uncertainty and risk prevail and where relationship building is central to effective service delivery. Despite its significance, research on trust, particularly among multi-disciplinary healthcare teams and between service providers and users is limited and explored only tangentially within early psychosis intervention (EPI) programs. An institutional ethnographic approach is used to examine how trust within an EPI setting is produced and operates. Drawing on participant observation, textual analysis of clinic documents and in-depth interviews with 27 participants (staff, young people and family members), our analysis outlines how the clinic manager's and staff's resistance to hospital rulings that impeded EPI policy principles were part of the extended sequence of activities that produced trust. These acts of resistance, alongside the clinic manager's reflective leadership practices, cultivated spaces for staff to take risks, share their ideas and build consensus - culminating in staff-designed protocols that produced trust among one another, and between service providers and young people and their families. Drawing from Brown and Calnan's framework of "vicious" and "virtuous" cycles of (dis)trust, we highlight how management and staff responses to vulnerability and uncertainty generated trust through their communication practices and knowledge sharing. We also suggest that protocols to manage the risk of medication non-adherence and treatment dis-engagement among young people contained regulatory functions, pointing to the complex interplay of trust, control and risk. Study implications suggest shifting the emphasis from risk management and quality governance as an organizing framework in mental health to a framework based on trust.
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http://dx.doi.org/10.1016/j.socscimed.2020.112948DOI Listing
May 2020

Lessons Learned in a Physician Referral to Pediatric Telemental Health Services Program.

J Can Acad Child Adolesc Psychiatry 2019 Nov 1;28(3):99-104. Epub 2019 Nov 1.

Professor of Mental Health, Black Dog Institute, University of New South Wales, New South Wales, Australia.

Background: This study explores the physician referral and engagement process of a pediatric telemental health program based in a large urban teaching children's hospital, and identifies the processes, strengths and challenges from the perspectives of Primary Care Physicians (PCPs) and telepsychiatrist consultants.

Methods: A mixed methods approach was used. This included an online survey completed by 43 PCPs in Ontario rural communities who had referred patients to the telemental health program. Qualitative interviews were conducted with 11 child/adolescent telepsychiatrists who provide consultations via teleconferencing.

Results: The majority of PCPs (61%) reported somewhat to moderate satisfaction with referral experiences. Challenges identified by physicians were related to communication and administration issues including: lack of timely follow-up appointments and continuity of care; lengthy referral forms; and recommendations for mental health services not accessible in their communities. Similarly, psychiatrist consultants expressed frustration with the sparse information they received from referring physicians and most significantly, the absence of appropriate service providers/professionals during the consultation to provide collateral information and ensure uptake of recommendations.

Conclusion: Telemental health programs provide a valuable service to PCPs and their child and youth clients that could be significantly enhanced with a different consultation model. Such models of service delivery require protocols to educate PCPs, improve communication and information sharing and establish clear expectations between PCPs and telepsychiatry consultants.
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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6863575PMC
November 2019

Feasibility and Acceptability of a Mental Health Website for Adults With an Intellectual Disability: Qualitative Evaluation.

JMIR Ment Health 2019 Mar 28;6(3):e12958. Epub 2019 Mar 28.

Black Dog Institute, Sydney, Australia.

Background: Electronic mental health (e-mental health) programs for people with an intellectual disability are currently underexplored but may provide a way of mitigating some of the barriers that this population faces in accessing appropriate mental health services.

Objective: The aim of this study was to examine the feasibility and acceptability of Healthy Mind, an e-mental health program for adults with an intellectual disability developed by the Black Dog Institute, focusing on the design and implementation of the website.

Methods: A qualitative research design was used, which involved semistructured interviews and focus groups with people with an intellectual disability, support workers, and allied health professionals. People with an intellectual disability were also observed while using the website. A thematic analysis was used to interrogate the interview transcripts and observational field notes.

Results: Participants found the content of the website informative and appreciated the many ways that the website had been made accessible to users. Participants voiced some differing requirements regarding the way information should be presented and accessed on the website. Acknowledging different types of support needs was identified as an important issue for website dissemination.

Conclusions: The Healthy Mind website promises to provide an excellent tool for people with ID and their supporters. This research has pragmatic implications for the future development and implementation of the program, while contributing to knowledge in the broader fields of e-mental health and inclusive design for people with an intellectual disability.
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http://dx.doi.org/10.2196/12958DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6458530PMC
March 2019

Feasibility and acceptability of Indigenous Counselling and Nicotine (ICAN) QUIT in Pregnancy multicomponent implementation intervention and study design for Australian Indigenous pregnant women: A pilot cluster randomised step-wedge trial.

Addict Behav 2019 03 30;90:176-190. Epub 2018 Oct 30.

University of Newcastle, University Drive, Callaghan, New South Wales 2308, Australia. Electronic address:

Background: Many health providers (HPs) lack knowledge, confidence, optimism and skills in addressing smoking with pregnant women. This study aimed to explore the feasibility and acceptability of a) a co-designed multi-component intervention for HPs at Aboriginal Medical Services (AMSs) in culturally-targeted pregnancy-specific smoking cessation care and b) the study design.

Methods: Using a randomised step-wedge cluster design, the Indigenous Counselling And Nicotine (ICAN) QUIT in Pregnancy Trial was evaluated across six AMSs in three Australian states. HPs were provided educational resource packages including live interactive webinars, treatment manuals, patient resources, carbon monoxide (CO) meters, and oral Nicotine Replacement Therapy (NRT). Feasibility was assessed through recruitment and retention rates of both pregnant women (12-weeks) and HPs (end of study) as well as the potential to improve women's quit rates. Qualitative interviews with staff post-trial explored acceptability of the intervention and study, based on capability, opportunity and motivation from the Behaviour Change Wheel.

Results: Pregnant women (n = 22; 47% (95% CI: 32%, 63%) eligible) and HPs (n = 50; 54% (95% CI: 44%, 64%) eligible) were recruited over 6 months with retention rates of 77% (95% CI: 57%, 90%) and 40% (95% CI: 28%, 54%) respectively. Self-reported 12-week 7-day point-prevalence abstinence was 13.6% (n = 3) and validated abstinent with CO readings ≤6 ppm. Staff interviewed regarding intervention implementation highlighted the importance of provision and use of resources, including training materials, patient resources, CO meters and oral NRT. Resources helped increase capability and opportunity, restructure the environment, and provided social comparison and modelling. Staff were motivated by greater engagement with pregnant women and seeing the women's reductions in CO readings. Having the intervention at the AMSs improved organisational capacity to engage with pregnant women. Staff reported changes to their routine practice that were potentially sustainable. Recommendations for improvement to the implementation of the intervention and research included reducing training length and the tasks related to conducting the study.

Conclusion: ICAN QUIT in Pregnancy was a pilot study with the ability to enrol Indigenous women. It was feasible to implement and acceptable to most staff of the AMSs in three states, with modifications recommended. Smoking in pregnancy is a key challenge for Indigenous health. The intervention needs to be evaluated through a methodologically rigorous fully-powered study to determine the efficacy of outcomes for women.

Trial Registration: Australian and New Zealand Clinical Trials Registry, ACTRN12616001603404. Registered 21 November 2016 - retrospectively registered, https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=371778.
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http://dx.doi.org/10.1016/j.addbeh.2018.10.036DOI Listing
March 2019

Ahead of the game protocol: a multi-component, community sport-based program targeting prevention, promotion and early intervention for mental health among adolescent males.

BMC Public Health 2018 03 21;18(1):390. Epub 2018 Mar 21.

Illawarra Institute for Mental Health, School of Psychology, Faculty of Social Sciences, University of Wollongong, Northfields Avenue, Wollongong, 2522, Australia.

Background: There is a recognised need for targeted community-wide mental health strategies and interventions aimed specifically at prevention and early intervention in promoting mental health. Young males are a high need group who hold particularly negative attitudes towards mental health services, and these views are detrimental for early intervention and help-seeking. Organised sports provide a promising context to deliver community-wide mental health strategies and interventions to adolescent males. The aim of the Ahead of the Game program is to test the effectiveness of a multi-component, community-sport based program targeting prevention, promotion and early intervention for mental health among adolescent males.

Methods: The Ahead of the Game program will be implemented within a sample drawn from community sporting clubs and evaluated using a sample drawn from a matched control community. Four programs are proposed, including two targeting adolescents, one for parents, and one for sports coaches. One adolescent program aims to increase mental health literacy, intentions to seek and/or provide help for mental health, and to decrease stigmatising attitudes. The second adolescent program aims to increase resilience. The goal of the parent program is to increase parental mental health literacy and confidence to provide help. The coach program is intended to increase coaches' supportive behaviours (e.g., autonomy supportive behaviours), and in turn facilitate high-quality motivation and wellbeing among adolescents. Programs will be complemented by a messaging campaign aimed at adolescents to enhance mental health literacy. The effects of the program on adolescent males' psychological distress and wellbeing will also be explored.

Discussion: Organised sports represent a potentially engaging avenue to promote mental health and prevent the onset of mental health problems among adolescent males. The community-based design, with samples drawn from an intervention and a matched control community, enables evaluation of adolescent males' incremental mental health literacy, help-seeking intentions, stigmatising attitudes, motivation, and resilience impacts from the multi-level, multi-component Ahead of the Game program. Notable risks to the study include self-selection bias, the non-randomised design, and the translational nature of the program. However, strengths include extensive community input, as well as the multi-level and multi-component design.

Trial Registration: Australian New Zealand Clinical Trials Registry ACTRN12617000709347 . Date registered 17 May 2017. Retrospectively registered.
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http://dx.doi.org/10.1186/s12889-018-5319-7DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5863482PMC
March 2018

Pain Management and Use of Opioids in Pediatric Oncology in India: A Qualitative Approach.

J Glob Oncol 2017 Aug 2;3(4):331-337. Epub 2016 Nov 2.

and , The Hospital for Sick Children, Toronto; , McMaster University, Hamilton, Ontario, Canada; , University of New South Wales, Sydney, New South Wales, Australia; and , , and , Tata Memorial Hospital, Mumbai, India.

Purpose: Consumption of medical opium for pain relief in India is low, despite the country being one of the main world producers of the substance. We investigated obstacles to opioid use and physician perceptions about optimal pain management in pediatric oncology patients in India.

Methods: Semistructured interviews were conducted with oncologists who work in pediatric oncology settings. A mixed sampling strategy was used, including maximum variation and confirmation and disconfirmation of cases, as well as snowball sampling. Key informants were identified. Interviews were audio recorded, transcribed verbatim, and analyzed by thematic analysis methodology.

Results: Twenty-three interviews were performed across 20 Indian institutions. The main obstacles identified were lack of financial resources, inadequate education of health care providers on pain management, insufficient human resources (particularly lack of dedicated trained oncology nurses), poor access to opioids, and cultural perceptions about pain. Children from rural areas, treated in public hospitals, and from lower socioeconomic classes appear disadvantaged. A significant equality gap exists between public institutions and private institutions, which provide state-of-the-art treatment.

Conclusion: The study illuminates the complexity of pain management in pediatric oncology in India, where financial constraints, lack of education, and poor access to opioids play a dominant role, but lack of awareness and cultural perceptions about pain management among health care providers and parents emerged as important contributing factors. Urgent interventions are needed to optimize care in this vulnerable population.
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http://dx.doi.org/10.1200/JGO.2016.003483DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5560448PMC
August 2017

Dyslipidemia management in overweight or obese adolescents: A mixed-methods clinical trial of motivational interviewing.

SAGE Open Med 2017 15;5:2050312117707152. Epub 2017 May 15.

Labatt Family Heart Centre, Department of Paediatrics, University of Toronto, The Hospital for Sick Children, Toronto, ON, Canada.

Background: Lifestyle management for dyslipidemic adolescents often occurs in the context of family-centered care, which necessitates adaptation of counseling strategies.

Objective: To determine the effectiveness of motivational interviewing for lifestyle behavior change for dyslipidemic adolescents in a dyad with a parent versus alone.

Methods: A total number of 32 adolescents were randomized 1:1 to receive a series of motivational interviewing sessions either together with a parent or alone for a 6-month intervention, with both quantitative and qualitative assessment of outcomes.

Results: Both groups were similar at baseline. Following the intervention, there were no significant differences between groups in physical, laboratory, lifestyle or psychosocial measures, except for a reduction in dietary fats/sugars (p = 0.02) and in screen time (p = 0.02) in the alone group. When both groups were combined, significant reductions at 6 months were noted for body mass index (p < 0.001), waist circumference (p < 0.001), total cholesterol (p < 0.001), low-density lipoprotein cholesterol (p < 0.001), triglycerides (p = 0.01), non-high-density lipoprotein cholesterol (p < 0.001), fasting insulin (p = 0.01), and homeostatic model (p = 0.02). Reduced screen time and increased fruit and vegetable intake were also noted for both groups combined. These changes were also reflected in self-efficacy (p = 0.004), self-esteem (p = 0.03), and improvement in quality of life measures. Interview data provided insights into the utility and acceptability of the motivational interviewing intervention.

Conclusion: Motivational interviewing was an efficient strategy for inspiring healthy lifestyle and physiological changes among adolescents in both groups. Family centered pediatric approaches should consider the autonomy and individual preferences of the adolescent prior to counseling.
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http://dx.doi.org/10.1177/2050312117707152DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5438108PMC
May 2017

Kawasaki Disease With Coronary Artery Aneurysms: Psychosocial Impact on Parents and Children.

J Pediatr Health Care 2017 Jul - Aug;31(4):459-469. Epub 2016 Dec 24.

Introduction: For those living with Kawasaki disease and coronary artery aneurysms, little is known about the psychosocial burden faced by parents and their children.

Methods: Exploratory, descriptive, mixed-methods design examining survey and interview data about health-related uncertainty, intrusiveness, and self-efficacy.

Results: Parents' uncertainty was associated with missed diagnosis, higher income, and maternal education. Higher uncertainty scores among children were associated with absence of chest pain and lower number of echocardiograms. High intrusiveness scores among parents were associated with previous cardiac catheterization, use of anticoagulants, lower parent education and income, and missed diagnosis. High intrusiveness scores among children were associated with high paternal education. Children's total self-efficacy scores increased with chest pain and larger aneurysm size. Qualitative analysis showed two central themes: Psychosocial Struggle and Cautious Optimism.

Discussion: Negative illness impact is associated with a more intense medical experience and psychosocial limitations. Timely assessment and support are warranted to meet parents' and children's needs.
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http://dx.doi.org/10.1016/j.pedhc.2016.11.007DOI Listing
May 2018

Special Series on the Use of Technology in the Delivery of Child and Youth Mental Health Services and Supports.

J Can Acad Child Adolesc Psychiatry 2016 1;25(2):68. Epub 2016 May 1.

Associate Psychiatrist in Chief, Psychiatry, The Hospital for Sick Children, Associate Professor, Department of Psychiatry, University of Toronto, Toronto, Canada.

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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4879943PMC
June 2016

Testicular Biopsy for Fertility Preservation in Prepubertal Boys with Cancer: Identifying Preferences for Procedure and Reactions to Disclosure Practices.

J Urol 2016 07 3;196(1):219-24. Epub 2016 Mar 3.

Division of Urology, Department of Surgery, Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada; Black Dog Institute, University of New South Wales, Sydney, New South Wales, Australia. Electronic address:

Purpose: Fertility preservation options are limited in prepubertal boys with cancer. Worldwide there has been growing interest in testicular tissue cryopreservation as a promising experimental strategy to address future infertility. We measured and compared parent, male cancer survivor and provider willingness to accept the risk of testicular biopsy among prepubertal boys with cancer, and identified reactions to disclosure practices.

Materials And Methods: We conducted a multicenter study that included 153 parents of prepubertal boys with cancer, 77 male survivors of childhood cancer and 30 oncology providers. The threshold technique was used to measure subject relative willingness to accept risk of testicular biopsy under 4 different aspects of care, ie chance of infertility, complications from biopsy, development of technology to use tissue and tissue storage cost. A total of 47 in-depth interviews were conducted to identify reactions to disclosure practices.

Results: A total of 52 survivors (67%), 22 providers (73%) and 110 parents (72%) selected to have testicular biopsy (vs no biopsy). Median minimum infertility risk to make biopsy worthwhile varied from 25% to 30% among the 3 respondent groups. Interviews revealed that some providers would not offer biopsy in cases of greater perceived risk than benefit, that parents preferred having information regardless of risk of infertility and that nondisclosure elicited adverse feelings from some parents.

Conclusions: Parents, survivors and providers were willing to accept risk of prepubertal testicular biopsy. Parental/survivor desire for information and provider decision not to disclose suggest that barriers to information delivery need to be addressed.
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http://dx.doi.org/10.1016/j.juro.2016.02.2967DOI Listing
July 2016

Resident Evaluation of a Required Telepsychiatry Clinical Experience.

Acad Psychiatry 2016 Apr 30;40(2):348-52. Epub 2015 Jun 30.

University of Toronto, Toronto, ON, Canada.

Objective: The authors explored resident experiences of telepsychiatry clinical training. This paper describes an analysis of evaluation forms completed by psychiatry residents following a required training experience in telepsychiatry.

Methods: Retrospective numeric and narrative data were collected from 2005 to 2012. Using a five-point Likert-type scale (1 = strongly disagree and 5 = strongly agree), residents ranked the session based on the following characteristics: the overall experience, interest in participating in telepsychiatry in the future, understanding service provision to underserved areas, telepsychiatry as mode of service delivery, and the unique aspects of telepsychiatry work. The authors also conducted a content analysis of narrative comments in response to open-ended questions about the positive and negative aspects of the training experience.

Results: In all, 88% of residents completed (n = 335) an anonymous evaluation following their participation in telepsychiatry consultation sessions. Numeric results were mostly positive and indicated that the experience was interesting and enjoyable, enhanced interest in participating in telepsychiatry in the future, and increased understanding of providing psychiatric services to underserved communities. Narrative data demonstrated that the most valuable aspects of training included the knowledge acquired in terms of establishing rapport and engaging with patients, using the technology, working collaboratively, identifying different approaches used, and awareness of the complexity of cases. Resident desire for more training of this nature was prevalent, specifically a wish for more detail, additional time for discussion and debriefing, and further explanation of the unique aspects of telepsychiatry as mode of delivery.

Conclusions: More evaluation of telepsychiatry training, elective or required, is needed. The context of this training offered potential side benefits of learning about interprofessional and collaborative care for the underserved.
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http://dx.doi.org/10.1007/s40596-015-0373-2DOI Listing
April 2016

Using technology to deliver mental health services to children and youth: a scoping review.

J Can Acad Child Adolesc Psychiatry 2014 May;23(2):87-99

TeleLink Mental Health Program, The Hospital for Sick Children, Toronto, Ontario ; The Ontario Child and Youth Telepsychiatry Program, Toronto, Ontario.

Objective: To conduct a scoping review on the use of technology to deliver mental health services to children and youth in order to identify the breadth of peer-reviewed literature, summarize findings and identify gaps.

Method: A literature database search identified 126 original studies meeting criteria for review. Descriptive numerical summary and thematic analyses were conducted. Two reviewers independently extracted data.

Results: Studies were characterized by diverse technologies including videoconferencing, telephone and mobile phone applications and Internet-based applications such as email, web sites and CD-ROMs.

Conclusion: The use of technologies plays a major role in the delivery of mental health services and supports to children and youth in providing prevention, assessment, diagnosis, counseling and treatment programs. Strategies are growing exponentially on a global basis, thus it is critical to study the impact of these technologies on child and youth mental health service delivery. An in-depth review and synthesis of the quality of findings of studies on effectiveness of the use of technologies in service delivery are also warranted. A full systematic review would provide that opportunity.
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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4032077PMC
May 2014

Analysis of a support group for children of parents with mental illnesses: managing stressful situations.

Qual Health Res 2014 Sep 21;24(9):1171-82. Epub 2014 Mar 21.

University of Toronto, Toronto, Ontario, Canada.

We report an ethnographic analysis of a psycho-education and peer-support program for school-aged children of parents with mental illnesses. We conducted a critical discourse analysis of the program manual and observed group interactions to understand whether children shared program goals predetermined by adults, and how, or if, the intervention was responsive to their needs. Children were expected to learn mental illness information because "knowledge is power," and to express difficult feelings about being a child of a mentally ill parent that was risky. Participants used humor to manage group expectations, revealing how they made sense of their parents' problems, as well as their own. Suggestions are made for determining good mental health literacy based on children's preferences for explaining circumstances in ways they find relevant, and for supporting children's competencies to manage relationships that are important to them.
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http://dx.doi.org/10.1177/1049732314528068DOI Listing
September 2014

Shared decision making in the management of children with newly diagnosed immune thrombocytopenia.

J Pediatr Hematol Oncol 2014 Oct;36(7):559-65

*Division of Pediatric Medicine and the Pediatric Outcomes Research Team †Department of Pediatrics ¶Division of Hematology/Oncology, Hospital for Sick Children, University of Toronto ‡Department of Psychiatry and Child Health Evaluative Sciences §University of Toronto, Dalla Lana School of Public Health ∥Institute of Medical Science, University of Toronto, Toronto **Department of Pediatrics, Division of Hematology/Oncology, McMaster University, Hamilton, Canada #Department of Community and Family Medicine, Dartmouth Medical School, New Hampshire, UK.

This study aimed to examine the treatment decision-making process for children hospitalized with newly diagnosed immune thrombocytopenia (ITP). Using focus groups, we studied children with ITP, parents of children with ITP, and health care professionals, inquiring about participants' experience with decision support and decision making in newly diagnosed ITP. Data were examined using thematic analysis. Themes that emerged from children were feelings of "anxiety, fear, and confusion"; the need to "understand information"; and "treatment choice," the experience of which was age dependent. For parents, "anxiety, fear, and confusion" was a dominant theme; "treatment choice" revealed that participants felt directed toward intravenous immune globulin (IVIG) for initial treatment. For health care professionals, "comfort level" highlighted factors contributing to professionals' comfort with offering options; "assumptions" were made about parental desire for participation in shared decision making (SDM) and parental acceptance of treatment options; "providing information" was informative regarding modes of facilitating SDM; and "treatment choice" revealed a discrepancy between current practice (directed toward IVIG) and the ideal of SDM. At our center, families of children with newly diagnosed ITP are not experiencing SDM. Our findings support the implementation of SDM to facilitate patient-centered care for the management of pediatric ITP.
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http://dx.doi.org/10.1097/MPH.0000000000000120DOI Listing
October 2014

Choosing child and adolescent psychiatry: factors influencing medical students.

J Can Acad Child Adolesc Psychiatry 2013 Nov;22(4):260-7

Community Health Systems Resource Group, The Hospital for Sick Children, Toronto, Ontario.

Objective: To examine the factors influencing medical students to choose child and adolescent psychiatry as a career specialty.

Method: Quantitative and qualitative methods were used. A web-based survey was distributed to child and adolescent psychiatrists at the University of Toronto. In-depth interviews were held with select child and adolescent psychiatrists as well as a focus group with psychiatry residents. Retrospective accounts of the factors that influenced their decision to choose psychiatry and/or child and adolescent psychiatry as a specialty were collected.

Results: Ninety-two percent of participants indicated that recruitment of child psychiatrists in Canada is a problem. The recent decision by the Royal College of Physicians and Surgeons to recognize child and adolescent psychiatry as a subspecialty and introduce an extra year of training was identified as a further challenge to recruitment efforts. Other deterrents included lower salary than other subspecialties, lack of exposure during training, stigma, and lack of interest in treating children. Recruitment into psychiatry was enhanced by good role modeling, early exposure in medical school, an interest in brain research, and career and lifestyle issues.

Conclusions: A rebranding of the role and perception of psychiatry is needed to attract future psychiatrists. Early exposure to innovations in child and adolescent psychiatry and positive role models are critical in attracting medical students. Recruitment should begin in the first year of medical school and include an enriched paediatric curriculum.
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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3825465PMC
November 2013

Barriers and Facilitators of Transition from Pediatric to Adult Long-Term Follow-Up Care in Childhood Cancer Survivors.

J Adolesc Young Adult Oncol 2013 Sep;2(3):104-11

7 The Hospital for Sick Children , Division of Haematology/Oncology, Toronto, Ontario, Canada .

Purpose: Despite the risk for late effects in adult survivors of cancer in childhood or adolescence, many survivors fail to transition from pediatric to adult long-term follow-up (LTFU) care. The purpose of this study was to identify the barriers and facilitators of transition from pediatric to adult LTFU care.

Methods: In this qualitative study, 38 Canadian survivors of cancer in childhood or adolescence, currently aged 15-26 years, were interviewed using semi-structured, open-ended questions. Participants belonged to one of four groups: pre-transition (n=10), successful transition (n=11), failed to transition (n=7), and transitioned to an adult center but then dropped out of adult care (n=10). A constructivist grounded theory approach was used to analyze the interview data. This approach consisted of coding transcripts line by line to develop categories and using constant comparison to examine relationships within and across codes and categories. Interviewing continued until saturation was reached.

Results: Three interrelated themes were identified that affected the transition process: micro-level patient factors (e.g., due diligence, anxiety), meso-level support factors (e.g., family, friends), and macro-level system factors (e.g., appointments, communication, healthcare providers). Factors could act as facilitators to transition (e.g., family support), barriers to transition (e.g., difficulty booking appointments), or as both a barrier and a facilitator (e.g., anxiety).

Conclusion: This study illustrates the interaction between multiple factors that facilitate and/or prevent transition from pediatric to adult LTFU cancer care. A number of recommendations are presented to address potential macro-level system barriers to successful transition.
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http://dx.doi.org/10.1089/jayao.2013.0003DOI Listing
September 2013

Attracting Child Psychiatrists to a Televideo Consultation Service: The TeleLink Experience.

Int J Telemed Appl 2013 20;2013:146858. Epub 2013 Jun 20.

Community Health Systems Resource Group, The Hospital for Sick Children, 555 University Avenue, Toronto, ON, Canada M5G 1X8.

Objective. Identify aspects of psychiatry work that are rewarding, as well as those that are challenging, from the perspective of psychiatrists and residents participating in televideo consultation services. Method. A web-based survey was distributed to psychiatrists within the Division of Child Psychiatry at the University of Toronto. Also, semistructured interviews were conducted with six child psychiatrists providing services to a telepsychiatry program. Finally, a focus group interview was held with four psychiatry residents. Results. Child psychiatrists are very comfortable conducting assessments via televideo. Factors identified as being important in the decision to participate in telepsychiatry include assisting underserved communities, supportive administrative staff, enhanced rural provider capacity, financial incentives, and convenience. The study's qualitative phase identified four themes in the decision to participate in telepsychiatry: (1) organizational, (2) shared values, (3) innovation, and (4) the consultation model. Conclusion. The success of televideo consultation programs in attracting child psychiatrists to provide consultation services to underresourced communities makes an important contribution to psychiatric workforce shortages. Understanding what aspects of telepsychiatry are most appreciated by consulting psychiatrists and residents offers useful strategies to telepsychiatry administrators and medical school educators seeking to attract, train, and retain psychiatry practitioners.
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http://dx.doi.org/10.1155/2013/146858DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3705750PMC
July 2013

Attitudes toward infection prophylaxis in pediatric oncology: a qualitative approach.

PLoS One 2012 24;7(10):e47815. Epub 2012 Oct 24.

Program in Child Health Evaluative Sciences, The Hospital for Sick Children, Toronto, Ontario, Canada.

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) In-depth 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.
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http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0047815PLOS
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3480391PMC
April 2013

Discrete choice experiment to evaluate factors that influence preferences for antibiotic prophylaxis in pediatric oncology.

PLoS One 2012 17;7(10):e47470. Epub 2012 Oct 17.

Canadian Centre for Applied Research in Cancer Control, British Columbia Cancer Research Agency, Vancouver, British Columbia, Canada.

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.
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http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0047470PLOS
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3474806PMC
April 2013

Reflections of young people who have had a first episode of psychosis: what attracted them to use alcohol and illicit drugs?

Early Interv Psychiatry 2013 May 8;7(2):193-9. Epub 2012 Mar 8.

Department of Psychiatry and Behavioural Neurosciences, McMaster University, Hamilton, Ontario, Canada.

Aim: To identify factors that contribute to the initiation of alcohol and street drug use from the perspective of people who were enrolled in early intervention programmes for a first episode of psychosis.

Method: Eight focus groups were conducted involving an average of four to six participants per group, with each group consisting of young people who met provincial inclusion criteria for early intervention programmes. Thematic analysis was used to systematically code transcripts from the focus groups for concepts, patterns and themes related to early use of illicit substances.

Results: Participants included 45 young people diagnosed with affective psychosis or non-affective spectrum disorders. Seventy-three percent were male, with a median age of 23 years. In general, substance use was an important topic that emerged across all focus groups. Participants talked about three main factors attracting them to initiate use of substances, most predominantly cannabis: (i) using within a social context; (ii) using as a self-medication strategy; and (iii) using to alter their perceptions.

Conclusions: The need for social relationships, coping strategies and pleasurable experiences appear to be important reasons for initiating substance use. Additional research is needed to identify whether prodromal youth report the same factors that attract them to initiate use in order to develop more effective prevention strategies.
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http://dx.doi.org/10.1111/j.1751-7893.2012.00355.xDOI Listing
May 2013

Youth at ultra high risk for psychosis: using the Revised Network Episode Model to examine pathways to mental health care.

Early Interv Psychiatry 2013 May 5;7(2):170-86. Epub 2012 Mar 5.

Child Health Evaluative Sciences, The Hospital for Sick Children, Toronto, Ontario, Canada.

Aim: This paper aims to identify the ways in which youth at ultra high risk for psychosis access mental health services and the factors that advance or delay help seeking, using the Revised Network Episode Model (REV NEM) of mental health care.

Methods: A case study approach documents help-seeking pathways, encompassing two qualitative interviews with 10 young people and 29 significant others. Theoretical propositions derived from the REV NEM are explored, consisting of the content, structure and function of the: (i) family; (ii) community and school; and (iii) treatment system.

Results: Although the aspects of the REV NEM are supported and shape pathways to care, we consider rethinking the model for help seeking with youth at ultra high risk for psychosis.

Conclusions: The pathway concept is important to our understanding of how services and supports are received and experienced over time. Understanding this process and the strategies that support positive early intervention on the part of youth and significant others is critical.
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http://dx.doi.org/10.1111/j.1751-7893.2012.00350.xDOI Listing
May 2013
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