Publications by authors named "Katherine Boydell"

86 Publications

Towards epistemic justice doing: Examining the experiences and shifts in knowledge of lived experience researchers over the course of a mental health research training programme.

Int J Ment Health Nurs 2021 Jul 14. Epub 2021 Jul 14.

Faculty of Medicine and Health, The University of Sydney, Sydney, New South Wales, Australia.

Participation of people with lived experience (LE) in mental health research is vital for improving the quality and relevance of research priorities, outcomes, and knowledge translation. Inclusion of people with LE is also recognized as central for achieving health service reform including commitments to human rights, social, and epistemic justice. Although a lack of research training is cited as a barrier to LE participation, few studies have examined the value of training for, or the specific requirements of, people with LE. This study seeks to address this gap. It reports on a longitudinal, qualitative study examining shifts in experience and knowledge, and unmet needs, of people with LE over the course of a coproduced research training programme. Findings indicate that the programme enabled participants to understand the role, value, and levels of LE participation in research. Participants also stressed the importance of the 'embodied lived expertise' of LE researchers who co-delivered the training programme. Nonetheless, participants indicated that they felt unprepared for the challenges of working in systems where LE knowledge is subordinated, and experiences of being silenced and powerless could mirror those previously experienced in mental health services and the community. Participants indicated a need for training that provided them with the epistemic resources to render such experiences intelligible. Findings also indicate that training in participatory research is required for conventional mental health researchers, to support them to navigate power asymmetries and value LE knowledge contributions.
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http://dx.doi.org/10.1111/inm.12910DOI Listing
July 2021

Towards epistemic justice doing: Examining the experiences and shifts in knowledge of lived experience researchers over the course of a mental health research training programme.

Int J Ment Health Nurs 2021 Jul 14. Epub 2021 Jul 14.

Faculty of Medicine and Health, The University of Sydney, Sydney, New South Wales, Australia.

Participation of people with lived experience (LE) in mental health research is vital for improving the quality and relevance of research priorities, outcomes, and knowledge translation. Inclusion of people with LE is also recognized as central for achieving health service reform including commitments to human rights, social, and epistemic justice. Although a lack of research training is cited as a barrier to LE participation, few studies have examined the value of training for, or the specific requirements of, people with LE. This study seeks to address this gap. It reports on a longitudinal, qualitative study examining shifts in experience and knowledge, and unmet needs, of people with LE over the course of a coproduced research training programme. Findings indicate that the programme enabled participants to understand the role, value, and levels of LE participation in research. Participants also stressed the importance of the 'embodied lived expertise' of LE researchers who co-delivered the training programme. Nonetheless, participants indicated that they felt unprepared for the challenges of working in systems where LE knowledge is subordinated, and experiences of being silenced and powerless could mirror those previously experienced in mental health services and the community. Participants indicated a need for training that provided them with the epistemic resources to render such experiences intelligible. Findings also indicate that training in participatory research is required for conventional mental health researchers, to support them to navigate power asymmetries and value LE knowledge contributions.
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http://dx.doi.org/10.1111/inm.12910DOI Listing
July 2021

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

IDTWO: A Protocol for a Randomised Controlled Trial of a Web-Based Mental Health Intervention for Australians with Intellectual Disability.

Int J Environ Res Public Health 2021 03 3;18(5). Epub 2021 Mar 3.

Black Dog Institute, Sydney, NSW 2031, Australia.

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 program following the eight-week treatment period. Efficacy will be assessed on the Anxiety, Depression, and Mood Scale; Kessler-10; and the World Health Organisation Disability Assessment Schedule 2.0 across three time-points (baseline, eight weeks, and three months). We expect that people who use the intervention will report reduced depression and anxiety, relative to the control group. To our knowledge, this is the first study to examine the effectiveness of a fully automated eMH program for improving mental health in people with ID. We expect our study to render new knowledge on the delivery and effects of internet-based cognitive behaviour therapy (CBT) tools for people with ID.
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http://dx.doi.org/10.3390/ijerph18052473DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7967603PMC
March 2021

Protocol for the process evaluation of a complex intervention delivered in schools to prevent adolescent depression: the Future Proofing Study.

BMJ Open 2021 01 12;11(1):e042133. Epub 2021 Jan 12.

Black Dog Institute, University of New South Wales, Sydney, New South Wales, Australia

Introduction: Process evaluations provide insight into how interventions are delivered across varying contexts and why interventions work in some contexts and not in others. This manuscript outlines the protocol for a process evaluation embedded in a cluster randomised trial of a digital depression prevention intervention delivered to secondary school students (the Future Proofing Study). The purpose is to describe the methods that will be used to capture process evaluation data within this trial.

Methods And Analysis: Using a hybrid type 1 design, a mixed-methods approach will be used with data collected in the intervention arm of the Future Proofing Study. Data collection methods will include semistructured interviews with school staff and study facilitators, automatically collected intervention usage data and participant questionnaires (completed by school staff, school counsellors, study facilitators and students). Information will be collected about: (1) how the intervention was implemented in schools, including fidelity; (2) school contextual factors and their association with intervention reach, uptake and acceptability; (3) how school staff, study facilitators and students responded to delivering or completing the intervention. How these factors relate to trial effectiveness outcomes will also be assessed. Overall synthesis of the data will provide school cluster-level and individual-level process outcomes.

Ethics And Dissemination: Ethics approval was obtained from the University of New South Wales (NSW) Human Research Ethics Committee (HC180836; 21st January 2019) and the NSW Government State Education Research Applications Process (SERAP 2019201; 19th August 2019). Results will be submitted for publication in peer-reviewed journals and discussed at conferences. Our process evaluation will contextualise the trial findings with respect to how the intervention may have worked in some schools but not in others. This evaluation will inform the development of a model for rolling out digital interventions for the prevention of mental illness in schools.

Trial Registration Number: ANZCTRN12619000855123; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=377664&isReview=true.
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http://dx.doi.org/10.1136/bmjopen-2020-042133DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7805380PMC
January 2021

Protocol for the process evaluation of a complex intervention delivered in schools to prevent adolescent depression: the Future Proofing Study.

BMJ Open 2021 01 12;11(1):e042133. Epub 2021 Jan 12.

Black Dog Institute, University of New South Wales, Sydney, New South Wales, Australia

Introduction: Process evaluations provide insight into how interventions are delivered across varying contexts and why interventions work in some contexts and not in others. This manuscript outlines the protocol for a process evaluation embedded in a cluster randomised trial of a digital depression prevention intervention delivered to secondary school students (the Future Proofing Study). The purpose is to describe the methods that will be used to capture process evaluation data within this trial.

Methods And Analysis: Using a hybrid type 1 design, a mixed-methods approach will be used with data collected in the intervention arm of the Future Proofing Study. Data collection methods will include semistructured interviews with school staff and study facilitators, automatically collected intervention usage data and participant questionnaires (completed by school staff, school counsellors, study facilitators and students). Information will be collected about: (1) how the intervention was implemented in schools, including fidelity; (2) school contextual factors and their association with intervention reach, uptake and acceptability; (3) how school staff, study facilitators and students responded to delivering or completing the intervention. How these factors relate to trial effectiveness outcomes will also be assessed. Overall synthesis of the data will provide school cluster-level and individual-level process outcomes.

Ethics And Dissemination: Ethics approval was obtained from the University of New South Wales (NSW) Human Research Ethics Committee (HC180836; 21st January 2019) and the NSW Government State Education Research Applications Process (SERAP 2019201; 19th August 2019). Results will be submitted for publication in peer-reviewed journals and discussed at conferences. Our process evaluation will contextualise the trial findings with respect to how the intervention may have worked in some schools but not in others. This evaluation will inform the development of a model for rolling out digital interventions for the prevention of mental illness in schools.

Trial Registration Number: ANZCTRN12619000855123; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=377664&isReview=true.
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http://dx.doi.org/10.1136/bmjopen-2020-042133DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7805380PMC
January 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

Digital Game Interventions for Youth Mental Health Services (Gaming My Way to Recovery): Protocol for a Scoping Review.

JMIR Res Protoc 2020 Jun 24;9(6):e13834. Epub 2020 Jun 24.

Department of Psychiatry, McGill University, Montreal, QC, Canada.

Background: Digital or video games are played by millions of adolescents and young adults around the world and are one of the technologies used by youths to access mental health services. Youths with mental health problems strongly endorse the use of technologies, including mobile and online platforms, to receive information, support their treatment journeys (eg, decision-making tools), and facilitate recovery. A growing body of literature explores the advantages of playing digital games for improving attention span and memory, managing emotions, promoting behavior change, and supporting treatment for mental illness (eg, anxiety, depression, or posttraumatic stress disorder). The research field has also focused on the negative impact of video games, describing potential harms related to aggression, addiction, and depression. To promote clarity on this matter, there is a great need for knowledge synthesis offering recommendations on how video games can be safely and effectively adopted and integrated into youth mental health services.

Objective: The Gaming My Way to Recovery scoping review project assesses existing evidence on the use of digital game interventions within the context of mental health services for youths (aged 11-29 years) using the stepped care model as the conceptual framework. The research question is as follows: For which youth mental health conditions have digital games been used and what broad objectives (eg, prevention, treatment) have they addressed?

Methods: Using the methodology proposed by Arksey and O'Malley, this scoping review will map the available evidence on the use of digital games for youths between 11 and 29 years old with mental health or substance use problems, or both.

Results: The review will bring together evidence-based knowledge to assist mental health providers and policymakers in evaluating the potential benefits and risks of these interventions. Following funding of the project in September 2018, we completed the search in November 2018, and carried out data screening and stakeholder engagement activities during preparation of the protocol. We will conduct a knowledge synthesis based on specific disorders, treatment level and modality, type of service, population, settings, ethical practices, and user engagement and offer recommendations concerning the integration of video game technologies and programs, future research and practice, and knowledge dissemination.

Conclusions: Digital game interventions employ unique, experiential, and interactive features that potentially improve skills and facilitate learning among players. Digital games may also provide a new treatment platform for youths with mental health conditions. Assessing current knowledge on video game technology and interventions may potentially improve the range of interventions offered by youth mental health services while supporting prevention, intervention, and treatment.

International Registered Report Identifier (irrid): PRR1-10.2196/13834.
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http://dx.doi.org/10.2196/13834DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7381025PMC
June 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

A trial protocol for the effectiveness of digital interventions for preventing depression in adolescents: The Future Proofing Study.

Trials 2020 Jan 2;21(1). Epub 2020 Jan 2.

Black Dog Institute, University of New South Wales, Sydney, NSW, Australia.

Background: Depression frequently first emerges during adolescence, and one in five young people will experience an episode of depression by the age of 18 years. Despite advances in treatment, there has been limited progress in addressing the burden at a population level. Accordingly, there has been growing interest in prevention approaches as an additional pathway to address depression. Depression can be prevented using evidence-based psychological programmes. However, barriers to implementing and accessing these programmes remain, typically reflecting a requirement for delivery by clinical experts and high associated delivery costs. Digital technologies, specifically smartphones, are now considered a key strategy to overcome the barriers inhibiting access to mental health programmes. The Future Proofing Study is a large-scale school-based trial investigating whether cognitive behaviour therapies (CBT) delivered by smartphone application can prevent depression.

Methods: A randomised controlled trial targeting up to 10,000 Year 8 Australian secondary school students will be conducted. In Stage I, schools will be randomised at the cluster level either to receive the CBT intervention app (SPARX) or to a non-active control group comparator. The primary outcome will be symptoms of depression, and secondary outcomes include psychological distress, anxiety and insomnia. At the 12-month follow-up, participants in the intervention arm with elevated depressive symptoms will participate in an individual-level randomised controlled trial (Stage II) and be randomised to receive a second CBT app which targets sleep difficulties (Sleep Ninja) or a control condition. Assessments will occur post intervention (both trial stages) and at 6, 12, 24, 36, 48 and 60 months post baseline. Primary analyses will use an intention-to-treat approach and compare changes in symptoms from baseline to follow-up relative to the control group using mixed-effect models.

Discussion: This is the first trial testing the effectiveness of smartphone apps delivered to school students to prevent depression at scale. Results from this trial will provide much-needed insight into the feasibility of this approach. They stand to inform policy and commission decisions concerning if and how such programmes should be deployed in school-based settings in Australia and beyond.

Trial Registration: Australian and New Zealand Clinical Trial Registry, ACTRN12619000855123. Registered on 31 May 2019. Clinical Trial Notification Scheme (CTN), CT-2019-CTN-02110-1-v1. Registered on 30 June 2019.
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http://dx.doi.org/10.1186/s13063-019-3901-7DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6941300PMC
January 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

What Works and What Doesn't Work? A Systematic Review of Digital Mental Health Interventions for Depression and Anxiety in Young People.

Front Psychiatry 2019 13;10:759. Epub 2019 Nov 13.

School of Computing & Engineering, Western Sydney University, Parramatta, NSW, Australia.

A major challenge in providing mental health interventions for young people is making such interventions accessible and appealing to those most in need. Online and app-based forms of therapy for mental health are burgeoning. It is therefore crucial to identify features that are most effective and engaging for young users. This study reports a systematic review and meta-analysis of digital mental health interventions and their effectiveness in addressing anxiety and depression in young people to determine factors that relate to outcomes, adherence, and engagement with such interventions. A mixed methods approach was taken, including a meta-analysis of 9 randomized controlled trials that compared use of a digital intervention for depression in young people to a no-intervention control group, and 6 comparing the intervention to an active control condition. A thematic analysis and narrative synthesis of 41 studies was also performed. The pooled effect size of digital mental health interventions on depression in comparison to a no-intervention control was small (Cohen's d = 0.33, 95% CI 0.11 to 0.55), while the pooled effect size of studies comparing an intervention group to an active control showed no significant differences (Cohen's d = 0.14, 95% CI -.04 to 0.31). Pooled effect sizes were higher when supervision was involved (studies with no-intervention controls: Cohen's d = 0.52, 95% CI 0.23 to 0.80; studies with active control: Cohen's d = 0.49, 95% CI -0.11, 1.01). Engagement and adherence rates were low. Qualitative analysis revealed that users liked interventions with a game-like feel and relatable, interactive content. Educational materials were perceived as boring, and users were put off by non-appealing interfaces and technical glitches. Digital interventions work better than no intervention to improve depression in young people when results of different studies are pooled together. However, these interventions may only be of clinical significance when use is highly supervised. Digital interventions do not work better than active alternatives regardless of the level of support. Future interventions need to move beyond the use of digital educational materials, considering other ways to attract and engage young people and to ensure relevance and appeal.
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http://dx.doi.org/10.3389/fpsyt.2019.00759DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6865844PMC
November 2019

What Works and What Doesn't Work? A Systematic Review of Digital Mental Health Interventions for Depression and Anxiety in Young People.

Front Psychiatry 2019 13;10:759. Epub 2019 Nov 13.

School of Computing & Engineering, Western Sydney University, Parramatta, NSW, Australia.

A major challenge in providing mental health interventions for young people is making such interventions accessible and appealing to those most in need. Online and app-based forms of therapy for mental health are burgeoning. It is therefore crucial to identify features that are most effective and engaging for young users. This study reports a systematic review and meta-analysis of digital mental health interventions and their effectiveness in addressing anxiety and depression in young people to determine factors that relate to outcomes, adherence, and engagement with such interventions. A mixed methods approach was taken, including a meta-analysis of 9 randomized controlled trials that compared use of a digital intervention for depression in young people to a no-intervention control group, and 6 comparing the intervention to an active control condition. A thematic analysis and narrative synthesis of 41 studies was also performed. The pooled effect size of digital mental health interventions on depression in comparison to a no-intervention control was small (Cohen's d = 0.33, 95% CI 0.11 to 0.55), while the pooled effect size of studies comparing an intervention group to an active control showed no significant differences (Cohen's d = 0.14, 95% CI -.04 to 0.31). Pooled effect sizes were higher when supervision was involved (studies with no-intervention controls: Cohen's d = 0.52, 95% CI 0.23 to 0.80; studies with active control: Cohen's d = 0.49, 95% CI -0.11, 1.01). Engagement and adherence rates were low. Qualitative analysis revealed that users liked interventions with a game-like feel and relatable, interactive content. Educational materials were perceived as boring, and users were put off by non-appealing interfaces and technical glitches. Digital interventions work better than no intervention to improve depression in young people when results of different studies are pooled together. However, these interventions may only be of clinical significance when use is highly supervised. Digital interventions do not work better than active alternatives regardless of the level of support. Future interventions need to move beyond the use of digital educational materials, considering other ways to attract and engage young people and to ensure relevance and appeal.
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http://dx.doi.org/10.3389/fpsyt.2019.00759DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6865844PMC
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

Care maps and care plans for children with medical complexity.

Child Care Health Dev 2019 01;45(1):104-110

Division of Paediatric Medicine, Department of Pediatrics, The Hospital for Sick Children, Toronto, Ontario, Canada.

Introduction: The support of families in the care of children with medical complexity (CMC) requires the integration of health care providers' (HCPs') medical knowledge and family experience. Care plans largely represent HCP information, and care maps demonstrate the family experience. Understanding the intersection between a care plan and a care map is critical, as it may provide solutions to the widely recognized tension between HCP-directed care and patient- and family-centered care (PFCC).

Method: This study used qualitative methods to explore the experience and usefulness of care maps. Parents of CMC who already had a care plan, created care maps (n = 15). Subsequent interviews with parents (n = 15) and HCPs (n = 30) of CMC regarding both care maps and care plans were conducted and analyzed using thematic analysis.

Results: Data analysis exploring the relationship and utility of care plans and care maps revealed six primary themes related to using care plans and care maps that were grouped into two primary categories: (a) utility of care plans and maps; and (b) intersection of care plans and care maps.

Discussion: Care plans and care maps were identified as valuable complementary documents. Their integration offers context about family experience and respects the parents' experiential wisdom in a standard patient care document, thus promoting improved understanding and integration of the family experience into care decision making.
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http://dx.doi.org/10.1111/cch.12632DOI Listing
January 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

A qualitative exploration: questioning multisource feedback in residency education.

BMC Med Educ 2018 Jul 24;18(1):170. Epub 2018 Jul 24.

Department of Paediatrics, The University of Toronto, Toronto, ON, Canada.

Background: Multisource feedback (MSF), involves the collection of feedback from multiple groups of assessors, including those without a traditional hierarchal responsibility to evaluate doctors. Allied healthcare professionals (AHCPs), administrative staff, peers, patients and their families may all contribute to the formative assessment of physicians. Theoretically, this feedback provides a thorough view of physician performance; however, the ability of MSF programs to consistently impact physician behavior remains in question. Therefore, the objective of this study was to explore perceptions and prerequisites to an effective MSF program in postgraduate medical education from the perspectives of both pediatric residents and AHCPs.

Methods: This exploratory study was conducted in a pediatric inpatient unit prior to implementation of a MSF program. Focus groups were conducted with purposefully recruited participants from three distinct groups: junior pediatric residents, senior pediatric residents, and AHCPs. Discussions were audio recorded, transcribed verbatim and analyzed using thematic analysis.

Results: Both residents and AHCPs expressed a strong interest in the concept of MSF. However, more in depth discussions identified barriers to residents' acceptance of, and AHCPs' provision of feedback. Roles and responsibilities, perceptions of expertise, hospital culture/interprofessionalism and power dynamics were identified as barriers to the acceptance and provision of feedback. All groups expressed interest in opportunities to engage in bi-directional feedback.

Conclusions: The identified barriers and prerequisites to providing and accepting MSF suggest limits to the efficacy of the MSF process. Our findings suggest that these factors should be considered in the design and implementation of MSF programs.
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http://dx.doi.org/10.1186/s12909-018-1270-7DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6057061PMC
July 2018

Peer work in Open Dialogue: A discussion paper.

Int J Ment Health Nurs 2018 Oct 25;27(5):1574-1583. Epub 2018 Mar 25.

Sydney Nursing School, The University of Sydney, Sydney, New South Wales, Australia.

Open Dialogue is a resource-oriented approach to mental health care that originated in Finland. As Open Dialogue has been adopted across diverse international healthcare settings, it has been adapted according to contextual factors. One important development in Open Dialogue has been the incorporation of paid, formal peer work. Peer work draws on the knowledge and wisdom gained through lived experience of distress and hardship to establish mutual, reciprocal, and supportive relationships with service users. As Open Dialogue is now being implemented across mental health services in Australia, stakeholders are beginning to consider the role that peer workers might have in this model of care. Open Dialogue was not, initially, conceived to include a specific role for peers, and there is little available literature, and even less empirical research, in this area. This discussion paper aims to surface some of the current debates and ideas about peer work in Open Dialogue. Examples and models of peer work in Open Dialogue are examined, and the potential benefits and challenges of adopting this approach in health services are discussed. Peer work in Open Dialogue could potentially foster democracy and disrupt clinical hierarchies, but could also move peer work from reciprocal to a less symmetrical relationship of 'giver' and 'receiver' of care. Other models of care, such as lived experience practitioners in Open Dialogue, can be conceived. However, it remains uncertain whether the hierarchical structures in healthcare and current models of funding would support any such models.
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http://dx.doi.org/10.1111/inm.12457DOI Listing
October 2018

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

Beyond Compliance Checking: A Situated Approach to Visual Research Ethics.

J Bioeth Inq 2018 Jun 19;15(2):293-303. Epub 2018 Mar 19.

Health, Rights and Development ([email protected]), School of Social Sciences, University of New South Wales, Sydney, Australia.

Visual research methods like photography and digital storytelling are increasingly used in health and social sciences research as participatory approaches that benefit participants, researchers, and audiences. Visual methods involve a number of additional ethical considerations such as using identifiable content and ownership of creative outputs. As such, ethics committees should use different assessment frameworks to consider research protocols with visual methods. Here, we outline the limitations of ethics committees in assessing projects with a visual focus and highlight the sparse knowledge on how researchers respond when they encounter ethical challenges in the practice of visual research. We propose a situated approach in relation to visual methodologies that encompasses a negotiated, flexible approach, given that ethical issues usually emerge in relation to the specific contexts of individual research projects. Drawing on available literature and two case studies, we identify and reflect on nuanced ethical implications in visual research, like tensions between aesthetics and research validity. The case studies highlight strategies developed in-situ to address the challenges two researchers encountered when using visual research methods, illustrating that some practice implications are not necessarily addressed using established ethical clearance procedures. A situated approach can ensure that visual research remains ethical, engaging, and rigorous.
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http://dx.doi.org/10.1007/s11673-018-9850-0DOI Listing
June 2018

Care maps for children with medical complexity.

Dev Med Child Neurol 2017 12 6;59(12):1299-1306. Epub 2017 Oct 6.

The Hospital for Sick Children, Toronto, Ontario, Canada.

Aim: Children with medical complexity require multiple providers and services to keep them well and at home. A care map is a patient/family-created diagram that pictorially maps out this complex web of services. This study explored what care maps mean for families and healthcare providers to inform potential for clinical use.

Method: Parents (n=15) created care maps (hand drawn n=10 and computer-generated n=5) and participated in semi-structured interviews about the process of developing care maps and their perceived impact. Healthcare providers (n=30) reviewed the parent-created care maps and participated in semi-structured interviews. Data were analysed for themes and emerging theory using a grounded theory analytical approach.

Results: Data analysis revealed 13 overarching themes that were further categorized into three domains: features (characteristics of care maps), functions (what care maps do), and emerging outcomes (benefits of care map use). These domains further informed a definition and a theoretical model of how care maps work.

Interpretation: Our findings suggest that care maps may be a way of supporting patient- and family-centred care by graphically identifying and integrating experiences of the family as well as priorities for moving forward.

What This Paper Adds: Care maps were endorsed as a useful tool by families and providers. They help healthcare providers better understand parental priorities for care. Parents can create care maps to demonstrate the complex burden of care. They are a unique visual way to incorporate narrative medicine into practice.
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http://dx.doi.org/10.1111/dmcn.13576DOI Listing
December 2017

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

The Reviews Are in: A Qualitative Content Analysis of Consumer Perspectives on Apps for Bipolar Disorder.

J Med Internet Res 2017 04 7;19(4):e105. Epub 2017 Apr 7.

Black Dog Institute, University of New South Wales, Sydney, Australia.

Background: The delivery of mobile health (mHealth) services is acceptable to mental health consumers. However, despite the benefits of accessibility, cost-effectiveness, anonymity, and ability to tailor content to individual needs, consumer engagement remains a hurdle for uptake and continued use. This may be unsurprising as few studies have examined app content from the consumer perspective or assessed consumer preferences for the content of apps for mental health management. An opportunity to examine consumer perspectives exists in using naturally generated data that is publically available in the Google Play and Apple app stores. Whereas commercial developers routinely use this data, to date there has been no in-depth evaluation within scientific research.

Objective: The aim of our study was to explore what consumers consider useful content for mental health management apps, identify unmet needs, and understand user expectations of mental health apps within the context of apps for bipolar disorder.

Methods: Publically available English language consumer reviews of 48 apps for bipolar disorder were used as data, providing a total of 2173 reviews. Review text was coded and analyzed using a team approach to qualitative content analysis. Results were presented in 2 forms: (1) a quantitative summary of the 9 major and minor themes and (2) a qualitative synthesis of key thematic findings.

Results: The majority of reviews were for symptom monitoring apps (87.94%, 1911/2173). The qualitative content analysis revealed 5 main themes: (1) laudatory talk, comments regarding the app's benefits including helpfulness and successful design features (74.00% of reviews, 1608/2173); (2) unfavorable feedback, negative reviews largely concerning unmet needs, privacy and technical issues, and potential dangers of app use (25.54%, 555/2173); (3) conceptions of community, referring to both communities of users with mental ill-health accessed via the app and a community created among app users and developers (24.25%, 527/2173); (4) wishlist features, app features requested by users (17.53%, 381/2173); and (5) apps and therapy, app use within clinical care (10.58%, 230/2173). Four minor themes were also identified: (1) app cost, (2) privacy and data security, (3) comparisons with traditional monitoring, and (4) evidence-based mHealth.

Conclusions: Although mostly positive, the proportion of reviews containing wishlist requests indicates consumer needs are not adequately addressed by currently available disorder management apps. Consumers value content that is helpful, supportive, and easy to use, and they are integrating apps into their health management and clinical care without necessarily considering the evidence-base or clinical effectiveness of the tool. User expectations regarding developer responsiveness to their needs has implications for community-based participatory research and integrated knowledge translation. However, this expectation is incompatible with current mHealth funding structures.
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http://dx.doi.org/10.2196/jmir.7273DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5400886PMC
April 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
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