Bearing witness poetically in a pandemic: documenting suffering and care in conditions of physical isolation and uncertainty.

The COVID-19 crisis is still affecting millions of people worldwide. However, government and mass media attention to the continuing loss of life, severe illness and prolonged effects of COVID-19 has subsided, rendering the suffering of those who have become ill or disabled, or who have lost loved ones to the disease, largely hidden from view. In this article, we employ autoethnographic poetic inquiry from the perspective of a mother/carer whose young adult daughter became critically ill and hospitalised after becoming infected while the mother herself was isolating at home due to her own COVID-19 diagnosis. The first author created a poem from notes she had made in a journal from telephone conversations and messages with the healthcare providers caring for her daughter. The second author responded to the poem, identifying the feelings and meanings it surfaced. Together, the authors draw on scholarship discussing concepts of uncertainty, liminality, moral distress, bearing witness and illness narratives to reflect on how autoethnographic poetic inquiry can document and make visible COVID-19-related suffering.

Understanding suicidal transitions in Australian adults: protocol for the LifeTrack prospective longitudinal cohort study.

BACKGROUND: The factors that influence transition from suicidal ideation to a suicide attempt or remission of suicidal thoughts are poorly understood. Despite an abundance of research on risk factors for suicidal ideation, no large-scale longitudinal population-based studies have specifically recruited people with suicidal ideation to examine the mechanisms underlying critical transitions to either suicide attempt or recovery from suicidal ideation. Without longitudinal data on the psychological, behavioural, and social determinants of suicide attempt and the remission of suicidal ideation, we are unlikely to see major gains in the prevention of suicide. AIM: The LifeTrack Project is a population-based longitudinal cohort study that aims to identify key modifiable risk and protective factors that predict the transition from suicidal ideation to suicide attempt or remission of suicidal ideation. We will assess theory-informed risk and protective factors using validated and efficient measures to identify distinct trajectories reflecting changes in severity of suicidal ideation and transition to suicide attempt over three years. METHODS: A three-year prospective population-based longitudinal cohort study will be conducted with adults from the general Australian population who initially report suicidal ideation (n = 842). Eligibility criteria include recent suicidal ideation (past 30 days), aged 18 years or older, living in Australia and fluent in English. Those with a suicide attempt in past 30 days or who are unable to participate in a long-term study will be excluded. Participants will be asked to complete online assessments related to psychopathology, cognition, psychological factors, social factors, mental health treatment use, and environmental exposures at baseline and every six months during this three-year period. One week of daily measurement bursts (ecological momentary assessments) at yearly intervals will also capture short-term fluctuations in suicidal ideation, perceived burdensomeness, thwarted belongingness, capability for suicide, and distress. CONCLUSION: This study is intended to identify potential targets for novel and tailored therapies for people experiencing suicidal ideation and improve targeting of suicide prevention programs. Even modest improvements in current treatments may lead to important reductions in suicide attempts and deaths. STUDY REGISTRATION: Australian New Zealand Clinical Trials Registry identifier: ACTRN12623000433606.

What constitutes brilliant aged care? A qualitative study of practices that exceed expectation.

AIM: This study aimed to explore what constitutes brilliant aged care. BACKGROUND: Although many aged care services do not offer the care that older people and carers need and want, some perform better. Rather than focus on problems with aged care, this study examined brilliant aged care-practices that exceeded expectation. DESIGN: The methodology for this study was informed by grounded theory, underpinned by constructionism to socially construct meaning. METHODS: This study invited nominations for a Brilliant Award via a survey, and interviews with the nominees via web conference. After receiving survey responses from 10 nominators, interviews were conducted with 12 nominees. Data were analysed using reflexive thematic analysis and documented according to COREQ guidelines to optimise rigour and transparency. RESULTS: According to participants, brilliant aged care involved being relationally attuned to older people, a deep understanding of the older person, recognition of aged care as more than a job, innovative practices and permission to reprioritise. CONCLUSIONS: This study suggests that, in aged care, brilliance happens. It emphasises the importance of meaningful connections and relationships in aged care, where thoughtful acts acknowledge an older person's value and humanity as well as creativity and innovation. RELEVANCE TO CLINICAL PRACTICE: For those who manage and deliver aged care, the findings suggest that small practice changes can make a positive difference to older people. Brilliant aged care can involve acts of empathy; enthusiasm for aged care; innovative practices, even those that are small scale; and reprioritising workplace tasks to spend time with older people. For policymakers, this study highlights the need to recognise and raise the profile of the pockets of brilliance within the aged care sector. This might be achieved via awards and other initiatives that serve to celebrate and learn from brilliance in its myriad forms. PATIENT OR PUBLIC CONTRIBUTION: The nominees, who included carers, were invited to participate in workshops with other carers and older people to co-design a model of brilliant aged care, during which workshop participants discussed and critiqued the findings constructed from the data.

Coalescing, Cross-Pollinating, Crystalising: Developing and Evaluating an Art Installation About Health Knowledge.

The HIVE is an arts-based knowledge translation (ABKT) project that showcases work undertaken across Maridulu Budyari Gumal: the Sydney Partnership for Health, Education, Research and Enterprise (SPHERE). Here, we present two distinct forms of data (reflective and evaluative) to tell the story of The HIVE and outline the project's achievements and shortcomings. Reflective data are used to describe the process of establishing a creative, cross-disciplinary collaboration, in order to devise and produce The HIVE. Evaluative data are used to assess the impact of The HIVE on audiences. By presenting reflective and evaluative data together, we highlight that impact in ABKT cannot be reduced to an assessment of audience engagement with an ABKT end-product. Although audience impact is vital, in our experience, The HIVE also had a powerful impact on the researchers, health service users, artists and others who worked together to create it. The process of creating The HIVE informed research- and art-practice change, forged interdisciplinary networks, and enabled the growth of new patterns of knowledge sharing and collaboration. The reflective and evaluative data we present attest to different forms of impact resulting from the creation and exhibition of an ABKT project.

The embodiment of childhood abuse and anorexia nervosa: A body mapping study.

Childhood trauma has long been implicated in the development of anorexia nervosa and is known to impact more women than men. Still, less is known about the meaning women attribute to food and bodily practices and how they contribute to feminine subjectivity. In this article, we examine the subjective experiences of women with histories of childhood abuse and anorexia and women who did not develop an eating disorder. Through a visual narrative analysis of eight body maps and narratives, we identified five themes: "time and the body have a way of showing what matters," "femininity and family," "sexual subjectivities and food meanings," "voices, dissociation, and sexual subjectivities," and "religion and healthism." In women with anorexia, specific eating and bodily practices reconstructed the traumatic events to align with the available cultural discourses related to health, religion, and family and had implications for their feminine and sexual subjectivities and self-worth. This research showcased how arts-based methodologies add value and advance knowledge about the role of culturally available representations in the development of anorexia and has implications for therapy and prevention of anorexia.

SISTAQUIT: training health care providers to help pregnant Aboriginal and Torres Strait Islander women quit smoking. A cluster randomised controlled trial.

BACKGROUND: About 44% of Indigenous Australian women smoke during pregnancy, compared with 12% of pregnant non-Indigenous women. Health care providers can assist smoking cessation, but they are not typically trained in culturally appropriate methods. OBJECTIVES: To determine whether a health care worker training intervention increases smoking cessation rates among Indigenous pregnant smokers compared with usual care. METHODS AND ANALYSIS: Supporting Indigenous Smokers to Assist Quitting (SISTAQUIT) study is a multicentre, hybrid type 1, pragmatic, cluster randomised controlled trial that compares the effects of an intervention for improving smoking cessation by pregnant Indigenous women (16 years or older, 32 weeks' gestation or less) with usual care. Twenty-one health services caring for Indigenous people in five Australian jurisdictions were randomised to the intervention (ten sites) or control groups (eleven sites). Health care providers at intervention sites received smoking cessation care training based on the ABCD (ask/assess; brief advice; cessation; discuss psychosocial context) approach to smoking cessation for Indigenous women, an educational resource package, free oral nicotine replacement therapy for participating women, implementation support, and trial implementation training. Health care providers in control group services provided usual care. PRIMARY OUTCOME: abstinence from smoking (self-reported abstinence via survey, validated by carbon monoxide breath testing when possible) four weeks after enrolment in the study. SECONDARY OUTCOMES: health service process evaluations; knowledge, attitudes, and practices of health care providers; and longer term abstinence, perinatal outcomes, and respiratory outcomes for babies (to six months). Ethics approval: The human research ethics committees of the University of Newcastle (H-2015-0438) and the Aboriginal Health and Medical Research Council of NSW (1140/15) provided the primary ethics approval. Dissemination of results: Findings will be disseminated in peer-reviewed publications, at local and overseas conferences, and via public and social media, and to participating health services in art-based formats and reports. Policy briefs will be communicated to relevant government organisations. TRIAL REGISTRATION: Australia New Zealand Clinical Trials Registry, ACTRN12618000972224 (prospective).

'The hardest job I've ever done': a qualitative exploration of the factors affecting junior doctors' mental health and well-being during medical training in Australia.

BACKGROUND: Medical practitioners can experience considerable stress and poor mental health during their careers, with doctors in training known to be particularly vulnerable. Previous research has documented work-related factors that may play a role in the mental health status of junior doctors. However, these and additional factors, need to be explored further by considering theory-driven, social, structural and contextual issues. This qualitative study aimed to explore the experiences of junior doctors working in Australian hospitals to identify factors that impact their mental health during medical training. METHOD: Semi-structured interviews were conducted with 12 junior medical officers (JMOs) employed across six hospitals in Australia. Transcribed de-identified interviews were analysed thematically using a data-driven inductive approach. RESULTS: Four interrelated main themes were identified: i) professional hierarchies; ii) occupational stress; iii) emotional labour, and iv) taking distress home; which detail the complex affective, relational and professional experiences of JMOs. The accounts demonstrate how the social, professional and organisational dimensions of these experiences impact upon trainee's well-being and mental health, both positively and negatively. Together, the findings document the dynamic, nuanced aspects of junior doctors' experiences of medical training and practice and highlights the importance of relational connections and the workplace environment in shaping JMOs' social and emotional well-being. CONCLUSION: The current study adds to the understanding of how junior doctors navigate medical training in Australian hospitals and highlights the complexities of this experience, particularly the ways in which mental health and well-being are shaped by different elements. These findings have important implications to inform new strategies to improve JMO mental health and to leverage work and non-work contexts to better support JMOs during medical training.

Factors That Help and Hinder the Implementation of Digital Depression Prevention Programs: School-Based Cross-sectional Study.

BACKGROUND: Digital prevention programs that are delivered in a school environment can inoculate young people against depression. However, little is known about the school-based factors that help and hinder the implementation of these programs. Staff members are integral for supporting mental health programs in schools and are likely to have a wealth of expertise and knowledge about the factors that affect implementation. OBJECTIVE: The primary objective of this study was to explore the barriers and facilitators to implementing a digital depression prevention program in Australian secondary schools with teachers, counselors, and principals. The secondary objective was to explore variations in these factors across different school contexts, including the school type (government or nongovernment), location (capital city, regional/or rural areas), and socioeconomic status (SES) (low, medium, high). METHODS: This quantitative cross-sectional survey study assessed the barriers and facilitators to implementing a hypothetical digital prevention program in Australian schools. The survey was taken by 97 teachers (average age 38.3 years), 93 counselors (average age 39.5 years), and 11 principals (average age 50.9 years) across Australia between November 2017 and July 2018. RESULTS: A range of barriers and facilitators relating to logistics and resources, staff support, and program factors were endorsed by the surveyed staff. Consistent with prior research, common barriers included a lack of time and resources (ie, staff and rooms). These barriers were particularly evident in government, rural/regional, and low socioeconomic schools. Other barriers were specific to digital delivery, including privacy issues and a lack of clarity around staff roles and responsibilities. Facilitators included upskilling staff through training, embedding the program into the curriculum, and other program factors including universal delivery, screening of students' mental health, and clear referral pathways. Knowledge about the program efficacy was also perceived as important by a large proportion of the respondents. CONCLUSIONS: The digital depression prevention program was perceived as suitable for use within different schools in Australia, although certain factors need to be considered to enable effective implementation. Logistics and resources, support, and program factors were identified as particularly important for school-based implementation. To maximize the effectiveness in delivering digital programs, implementation may need to be tailored to the staff roles and school types.

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

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.

Care maps and care plans for children with medical complexity.

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.

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

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.

A qualitative exploration: questioning multisource feedback in residency education.

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.

Care maps for children with medical complexity.

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.

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

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.

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

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.

Resident Evaluation of a Required Telepsychiatry Clinical Experience.

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.

Ethics in Community-University-Artist Partnered Research: Tensions, Contradictions and Gaps Identified in an 'Arts for Social Change' Project.

Academics from diverse disciplines are recognizing not only the procedural ethical issues involved in research, but also the complexity of everyday "micro" ethical issues that arise. While ethical guidelines are being developed for research in aboriginal populations and low-and-middle-income countries, multi-partnered research initiatives examining arts-based interventions to promote social change pose a unique set of ethical dilemmas not yet fully explored. Our research team, comprising health, education, and social scientists, critical theorists, artists and community-activists launched a five-year research partnership on arts-for-social change. Funded by the Social Science and Humanities Research Council in Canada and based in six universities, including over 40 community-based collaborators, and informed by five main field projects (circus with street youth, theatre by people with disabilities, dance for people with Parkinson's disease, participatory theatre with refugees and artsinfused dialogue), we set out to synthesize existing knowledge and lessons we learned. We summarized these learnings into 12 key points for reflection, grouped into three categories: community-university partnership concerns (n = 3), dilemmas related to the arts (n = 5), and team issues (n = 4). In addition to addressing previous concerns outlined in the literature (e.g., related to consent, anonymity, dangerous emotional terrain, etc.), we identified power dynamics (visible and hidden) hindering meaningful participation of community partners and university-based teams that need to be addressed within a reflective critical framework of ethical practice. We present how our team has been addressing these issues, as examples of how such concerns could be approached in community-university partnerships in arts for social change.

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

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.

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

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.