'They don't think I can do it': Experiences of self-advocates, employment specialists, and employers on employment of adults with intellectual disability.

BACKGROUND: A multi-phase Canadian study was conducted as part of a large-scale community and academic research partnership focused on understanding and improving the employment experiences of people with intellectual disabilities. METHOD: This multi-method study utilized a sequential approach, using findings from qualitative interviews (n = 28) to inform an online survey (n = 149). Participants were invited to share their experiences with paid employment or with persons with intellectual disabilities. RESULTS: Thematic analysis of data across interview and survey findings resulted in six themes: (1) assumptions and attitudes, (2) knowledge and awareness, (3) accessibility of processes, (4) use of accommodations, (5) workplace relationships, and (6) supports and resources. CONCLUSIONS: A holistic and systemic approach has the potential to improve inclusive employment experiences of people with intellectual disabilities. Action is needed mainly at the policy and employer level to reduce barriers and improve on facilitating measures reinforced by the themes shared in this study.

Engaging diverse patients in a diverse world: the development and preliminary evaluation of educational modules to support diversity in patient engagement research.

BACKGROUND: Current practices for engaging patients in patient-oriented research (POR) result in a narrow pool of patient perspectives being reflected in POR. This project aims to address gaps in methodological knowledge to foster diversity in POR, through the co-design and evaluation of a series of educational modules for health researchers in British Columbia, Canada. METHODS: Modules were co-created by a team of academic researchers and patient partners from hardly-reached communities. The modules are presented using the Tapestry Tool, an interactive, online educational platform. Our evaluation framework focused on engagement, content quality, and predicted behavior change. The User Engagement Scale short form (UES-SF) measured participants' level of engagement with the modules. Survey evaluation items assessed the content within the modules and participants' perceptions of how the modules will impact their behavior. Evaluation items modeled on the theory of planned behavior, administered before and after viewing the modules, assessed the impact of the modules on participants' perceptions of diversity in POR. RESULTS: Seventy-four health researchers evaluated the modules. Researchers' engagement and ratings of module content were high. Subjective behavioral control over fostering diversity in POR increased significantly after viewing the modules. CONCLUSIONS: Our results suggest the modules may be an engaging way to provide health researchers with tools and knowledge to increase diversity in health research. Future studies are needed to investigate best practices for engaging with communities not represented in this pilot project, such as children and youth, Indigenous Peoples, and Black communities. While educational interventions represent one route to increasing diversity in POR, individual efforts must occur in tandem with high-level changes that address systemic barriers to engagement.

Patient-Oriented research (POR) recognizes patients as partners in the research process, contributing valuable knowledge and lived experience to improve health outcomes and research translation. Unfortunately, POR presently does not represent all patients: patient partners involved in research tend to be white, middle-class women. Limited diversity in POR may limit research impact, in part because health research is not fully inclusive of the people requiring healthcare services and support. Although they recognize the need for diversity, many health researchers do not understand how to foster this. To empower health researchers with tools and knowledge to foster diversity in POR, we coordinated teams that co-created a set of educational modules. These teams included academic researchers and patient partners from seldom-heard communities in health research. The modules were built using the Tapestry Tool, an interactive, educational platform. We evaluated the modules using online surveys of 74 health researchers for three things: quality of module content, how engaging they were, and how they impacted health researchers' views on diversity in POR. Our results show that the modules' content was high quality and engaging. After viewing the modules, health researchers were more likely to feel like they had a role in engaging with more diverse people in their research, and felt that they had the tools, knowledge, and ability to do so. Education and knowledge for health researchers are a first step to increasing diversity in POR settings, but systemic barriers to inclusion also need attention.

Supporting Self-management and Quality of Life in Bipolar Disorder With the PolarUs App (Alpha): Protocol for a Mixed Methods Study.

BACKGROUND: Quality of life (QoL) is increasingly being recognized as a key outcome of interventions for bipolar disorder (BD). Mobile phone apps can increase access to evidence-based self-management strategies and provide real-time support. However, although individuals with lived experiences desire support with monitoring and improving broader health domains, existing BD apps largely target mood symptoms only. Further, evidence from the broader mobile health (mHealth) literature has shown that the desires and goals of end users are not adequately considered during app development, and as a result, engagement with mental health apps is suboptimal. To capitalize on the potential of apps to optimize wellness in BD, there is a need for interventions developed in consultation with real-world users designed to support QoL self-monitoring and self-management. OBJECTIVE: This mixed methods pilot study was designed to evaluate the alpha version of the newly developed PolarUs app, developed to support QoL self-monitoring and self-management in people with BD. Co-designed using a community-based participatory research framework, the PolarUs app builds on the web-based adaptation of a BD-specific QoL self-assessment measure and integrates material from a web-based portal providing information on evidence-informed self-management strategies in BD. The primary objectives of this project were to evaluate PolarUs app feasibility (via behavioral use metrics), the impact of PolarUs (via the Brief Quality of Life in Bipolar Disorder scale, our primary outcome measure), and explore engagement with the PolarUs app (via quantitative and qualitative methods). METHODS: Participants will be residents of North America (N=150), aged >18 years, with a Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision diagnosis of BD type 1, BD type 2, or BD not otherwise specified as assessed by structured diagnostic interview. An embedded mixed methods research design will be adopted; qualitative interviews with a purposefully selected subsample (approximately, n=30) of participants will be conducted to explore in more depth feasibility, impact, and engagement with the PolarUs app over the 12-week study period. RESULTS: At the time of publication of this protocol, the development of the alpha version of the PolarUs app was complete. Participant enrollment has begun in June 2022. Data collection is expected to be completed by December 2022. CONCLUSIONS: Beyond contributing knowledge on the feasibility and impact of a novel app to support QoL and self-management in BD, this study will also provide new insights related to engagement with mHealth apps. Furthermore, it will function as a case study of successful co-design between people with BD, health care providers, and BD researchers, providing a template for the future use of community-based participatory research frameworks in mHealth intervention development. The results will be used to further refine the PolarUs app and inform the design of a larger clinical trial. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/36213.

Sex: What Is the Big Deal? Exploring Individuals' with Intellectual Disabilities Experiences with Sex Education.

This article offers perspectives shared by self-advocates in the first phase of a community-based participatory research project untaken to address barriers that individuals with intellectual disabilities face with respect to sexual health knowledge. Using descriptive qualitative methods, we interviewed 19 individuals with intellectual disability about their experiences and knowledge related to sexual health. The research question guiding this project was: What are self-advocates' with intellectual disabilities experiences learning about sexual health and sexuality? The findings highlight that participants faced barriers and lack of access to sexual health education, and while they learned about sexual health through formal sexual health education, frequently this knowledge came through lived experience. Finally, the findings underscore that participants knew what they wanted with respect to sexual health education and offered recommendations. The importance of accessible sexual health education for self-advocates that supports their rights and desires to express their sexuality and sexual agency is highlighted.

"There's nothing here": Perspectives from rural parents promoting safe active recreation for children living with autism spectrum disorders.

BACKGROUND: Children with autism spectrum disorder (ASD) and their families experience challenges and barriers at multiple levels that influence their activity participation. The purpose of this study was to develop understanding about factors influencing how families can promote safe, active recreation for their children 3-12 years living with ASD across rural settings and how supports for these families can be enhanced. METHODS: This qualitative study used an interpretive descriptive approach. Twelve in-depth, semi-structured interviews with parents of children with ASD were conducted. Data was analyzed thematically. RESULTS: Four main themes emerged: 1) ASD specific child vulnerabilities impeding safe recreation. 2) Importance of safe outdoor spaces in rural settings for children with ASD. 3) Diverse parent strategies to address risks and needs. 4) Perceived needs for training of recreation providers. CONCLUSION: Findings highlight family-centred priority issues including parental safety concerns related to elopement and risk of injury linked to environmental and outdoor hazards prominent in rural settings. Autism awareness and recreational training is needed and could incorporate collaborative development of child specific safety plans to foster inclusive opportunities. Program planners can use this information to encourage policy making to aid families' safe activity participation.

Trauma, intellectual and/or developmental disability, and multiple, complex needs: A scoping review of the literature.

BACKGROUND: Trauma is a significant underlying factor in the multimorbidity of people with Intellectual and/or Development Disabilities (IDD). This relationship is further complicated by a growing recognition of a subset of multiply stigmatized individuals with an IDD and complex, intersecting health and social needs. AIM: The aim of this review was to examine what is known about trauma and people with an IDD and complex needs, as defined by Community Living British Columbia's (CLBC) Multiple, Complex Needs (MCN) framework, through a broad review of relevant literature. METHOD AND PROCEDURES: We conducted a scoping review of the peer-reviewed (9 disability journals; 7 academic databases) and grey (2 grey literature databases) on IDD and trauma through an inclusive approach that used search criteria drawn from the defining features of CLBC's MCN Framework. OUTCOMES AND RESULTS: Apart from there being a limited amount of research on trauma and IDD, two key findings emerged. Through differing approaches that get at issues of trauma in different ways (i.e., through adverse life events or experiences of abuse), the first finding is that the research related to trauma and IDD is not cleanly linked together. The second is the focus on treatment services or interventions and not on what's happening at the organizational or system level. CONCLUSION AND IMPLICATIONS: There is limited research on trauma and IDD making it even more important to unify the evidence that exists. However, the literature is not integrated across different theoretical and disciplinary perspectives. In addition, the focus of trauma-related research that is occurring is interventions at the individual versus system level. Also needed are studies that explore trauma-informed practice from an organizational or top-down perspective.

"I Can Understand Where They're Coming From": How Clinicians' Disability Experiences Shape Their Interaction With Clients.

Students and clinicians with disabilities are underrepresented in the academic health programs and professional clinical settings. Disability studies foregrounds the unique ways of knowing and being that clinicians with disabilities can offer. Based on a larger grounded theory study of the experiences of students and clinicians with disabilities, this article examines the role that clinicians' abilities to draw on their personal experiences of living with a disability have on their interactions with clients. The analysis of semistructured interviews with 55 students and clinicians with disabilities from different fields contributes to the development of a theory of epistemic connection. The theory is informed by the following three themes: (a) building rapport through understanding, (b) from understanding to advocacy and creative approaches, and (c) between professionalism and disability. The findings emphasize not only the importance of diversifying the health care workforce but also incorporating disability epistemology into the health care culture.

Experiences of a Web-Based Quality of Life Self-Monitoring Tool for Individuals With Bipolar Disorder: A Qualitative Exploration.

BACKGROUND: Self-monitoring of symptoms is a cornerstone of psychological interventions in bipolar disorder (BD), but individuals with lived experience also value tracking holistic outcomes, such as quality of life (QoL). Importantly, self-monitoring is not always experienced positively by people with BD and may have lower than expected rates of engagement. Therefore, before progressing into QoL tracking tools, it is important to explore user perspectives to identify possible risks and benefits, optimal methods to support engagement, and possible avenues to integrate QoL self-monitoring practices into clinical work. OBJECTIVE: This study aimed to conduct a qualitative exploration of how individuals with BD engaged with a Web-based version of a BD-specific QoL self-monitoring instrument, the QoL tool. METHODS: A total of 43 individuals with BD engaged with a self-management intervention with an optional Web-based QoL self-assessment tool as part of an overarching mixed method study. Individuals were later interviewed about personal experiences of engagement with the intervention, including experiences of gauging their own QoL. A thematic analysis was used to identify salient aspects of the experience of QoL self-monitoring in BD. RESULTS: In total, 4 categories describing people's experiences of QoL self-monitoring were identified: (1) breadth of QoL monitoring, (2) highlighting the positive, (3) connecting self-monitoring to action, and (4) self-directed patterns of use. CONCLUSIONS: The findings of this research generate novel insights into ways in which individuals with BD experience the Web-based QoL self-assessment tool. The value of tracking the breadth of domains was an overarching aspect, facilitating the identification of both areas of strength and life domains in need of intervention. Importantly, monitoring QoL appeared to have an inherently therapeutic quality, through validating flourishing areas and reinforcing self-management efforts. This contrasts the evidence suggesting that symptom tracking may be distressing because of its focus on negative experiences and positions QoL as a valuable adjunctive target of observation in BD. Flexibility and personalization of use of the QoL tool were key to engagement, informing considerations for health care providers wishing to support self-monitoring and future research into Web- or mobile phone-based apps.

Supporting Self-Management in Bipolar Disorder: Mixed-Methods Knowledge Translation Study.

BACKGROUND: Self-management is increasingly recognized as an important method through which individuals with bipolar disorder (BD) may cope with symptoms and improve quality of life. Digital health technologies have strong potential as a method to support the application of evidence-informed self-management strategies in BD. Little is known, however, about how to most effectively maximize user engagement with digital platforms. OBJECTIVE: The aims of this study were (1) to create an innovative Web-based Bipolar Wellness Centre, (2) to conduct a mixed-methods (ie, quantitative and qualitative) evaluation to assess the impact of different sorts of engagement (ie, knowledge translation [KT]), and (3) to support engagement with the self-management information in the Bipolar Wellness Centre. METHODS: The project was implemented in 2 phases. In phase 1, community-based participatory research and user-centered design methods were used to develop a website (Bipolar Wellness Centre) housing evidence-informed tools and strategies for self-management of BD. In phase 2, a mixed-methods evaluation was conducted to explore the potential impact of 4 KT strategies (Web-based webinars, Web-based videos, Web-based one-to-one Living Library peer support, and in-person workshops). Quantitative assessments occurred at 2 time points-preintervention and 3 weeks postintervention. Purposive sampling was used to recruit a subsample of participants for the qualitative interviews, ensuring each KT modality was represented, and interviews occurred approximately 3 weeks postintervention. RESULTS: A total of 94 participants were included in the quantitative analysis. Responses to evaluative questions about engagement were broadly positive. When averaged across the 4 KT strategies, significant improvements were observed on the Bipolar Recovery Questionnaire (F1,77=5.887; P=.02) and Quality of Life in Bipolar Disorder (F1,77=8.212; P=.005). Nonsignificant improvements in positive affect and negative affect were also observed. The sole difference that emerged between KT strategies related to the Chronic Disease Self-Efficacy measure, which decreased after participation in the webinar and video arms but increased after the Living Library and workshop arms. A subsample of 43 participants was included in the qualitative analyses, with the majority of participants describing positive experiences with the 4 KT strategies; peer contact was emphasized as a benefit across all strategies. Infrequent negative experiences were reported in relation to the webinar and video strategies, and included technical difficulties, the academic tone of webinars, and feeling unable to relate to the actor in the videos. CONCLUSIONS: This study adds incremental evidence to a growing literature that suggests digital health technologies can provide effective support for self-management for people with BD. The finding that KT strategies could differentially impact chronic disease self-efficacy (hypothesized as being a product of differences in degree of peer contact) warrants further exploration. Implications of the findings for the development of evidence-informed apps for BD are discussed in this paper.

The 'new normal': relativity of quality of life judgments in individuals with bipolar disorder-a qualitative study.

PURPOSE: Quality of life (QoL) is increasingly a target of interventions for bipolar disorders (BD). While the subjective experience of consumers is often elevated as central to the construct of QoL in BD, limited investigation in this area means subjective QoL remains poorly understood. The present qualitative study seeks to address this by investigating how people with BD appraise the quality of their lives in the context of a QoL self-management intervention. METHODS: Semi-structured interviews were conducted with 43 individuals who had participated in a self-management intervention for improving QoL in BD. Individuals were questioned about experiences of the intervention and perceptions of their QoL. Thematic analysis was used to explore participants' appraisal of their QoL. RESULTS: An overarching theme concerned the intrinsic relativity of subjective QoL: individuals located QoL as relative to self, others and possible futures. Incorporating illness-related reference points for QoL ('given my circumstances…') was associated with perceptions of improved QoL. Deliberately modifying reference points for QoL was perceived as self-compassionate. CONCLUSION: The present study generates novel hypotheses about how individuals with BD make sense of their QoL. Data suggest that individuals located their QoL relative to a variety of reference points, use of which was flexible. In accord with gap theories of QoL, individuals experienced acceptance of illness impacts as improving subjective sense of QoL. Rather than 'settling for' a lower standard of QoL, individuals experienced these changes as adaptive and positive. Findings are discussed in relation to the measurement and amelioration of QoL in BD.

'Taking back the reins' - A qualitative study of the meaning and experience of self-management in bipolar disorder.

BACKGROUND: Self-management (SM) is increasingly emphasised as a key aspect of bipolar disorder (BD) treatment. However, little is known about the subjective experience of SM, which might have both positive and negative impacts. The present study aimed to advance this literature through qualitative investigation of the experiences of people with BD who participated in an SM intervention targeting quality of life (QoL). METHODS: Forty-three individuals with BD engaged with an SM intervention and were later questioned about personal experiences of engagement with the intervention, including attempts to enact self-management strategies. Thematic analysis was used to identify important aspects of the experience of SM in BD. RESULTS: Four themes describing people's experiences of SM were identified: 1) SM for BD is empowering, 2) individual responsibility to self-manage BD, 3) SM strategies lack power to control BD, and 4) the relationship of SM to the healthcare system. LIMITATIONS: Potential limitations to generalisability may occur from self-selection bias in favour of SM and the QoL-focused nature of the present intervention. CONCLUSIONS: The findings of this research generate novel insights into ways in which individuals with BD engage with SM interventions. For most people with BD, SM invokes a sense of empowerment and responsibility, although some feel symptoms remain beyond their control. A sense of partnership between consumers and clinicians may emerge from attention to SM, but traditional medical approaches were perceived as neglecting this aspect of care. Considerations from consumer perspectives are presented to assist clinicians and researchers utilising SM interventions in BD.

Fit for purpose? Introducing a rational priority setting approach into a community care setting.

Purpose - Program budgeting and marginal analysis (PBMA) is a priority setting approach that assists decision makers with allocating resources. Previous PBMA work establishes its efficacy and indicates that contextual factors complicate priority setting, which can hamper PBMA effectiveness. The purpose of this paper is to gain qualitative insight into PBMA effectiveness. Design/methodology/approach - A Canadian case study of PBMA implementation. Data consist of decision-maker interviews pre (n=20), post year-1 (n=12) and post year-2 (n=9) of PBMA to examine perceptions of baseline priority setting practice vis-à-vis desired practice, and perceptions of PBMA usability and acceptability. Findings - Fit emerged as a key theme in determining PBMA effectiveness. Fit herein refers to being of suitable quality and form to meet the intended purposes and needs of the end-users, and includes desirability, acceptability, and usability dimensions. Results confirm decision-maker desire for rational approaches like PBMA. However, most participants indicated that the timing of the exercise and the form in which PBMA was applied were not well-suited for this case study. Participant acceptance of and buy-in to PBMA changed during the study: a leadership change, limited organizational commitment, and concerns with organizational capacity were key barriers to PBMA adoption and thereby effectiveness. Practical implications - These findings suggest that a potential way-forward includes adding a contextual readiness/capacity assessment stage to PBMA, recognizing organizational complexity, and considering incremental adoption of PBMA's approach. Originality/value - These insights help us to better understand and work with priority setting conditions to advance evidence-informed decision making.

Harnessing the potential of community-based participatory research approaches in bipolar disorder.

BACKGROUND: Despite the rapid growth in the sophistication of research on bipolar disorder (BD), the field faces challenges in improving quality of life (QoL) and symptom outcomes, adapting treatments for marginalized communities, and disseminating research insights into real-world practice. Community-based participatory research (CBPR)-research that is conducted as a partnership between researchers and community members-has helped address similar gaps in other health conditions. This paper aims to improve awareness of the potential benefits of CBPR in BD research. METHODS: This paper is a product of the International Society for Bipolar Disorders (ISBD) Taskforce on Community Engagement which includes academic researchers, healthcare providers, people with lived experience of BD, and stakeholders from BD community agencies. Illustrative examples of CBPR in action are provided from two established centres that specialize in community engagement in BD research: the Collaborative RESearch Team to study psychosocial issues in BD (CREST.BD) in Canada, and the Spectrum Centre for Mental Health Research in the United Kingdom. RESULTS AND DISCUSSION: We describe the philosophy of CBPR and then introduce four core research areas the BD community has prioritized for research: new treatment approaches, more comprehensive outcome assessments, tackling stigma, and enhanced understanding of positive outcomes. We then describe ways in which CBPR is ideal for advancing each of these research areas and provide specific examples of ways that CBPR has already been successfully applied in these areas. We end by noting potential challenges and mitigation strategies in the application of CBPR in BD research. CONCLUSIONS: We believe that CBPR approaches have significant potential value for the BD research community. The observations and concerns of people with BD, their family members, and supports clearly represent a rich source of information. CBPR approaches provide a collaborative, equitable, empowering orientation to research that builds on the diversity of strengths amongst community stakeholders. Despite the potential merits of this approach, CBPR is as yet not widely used in the BD research field, representing a missed opportunity.

Older Adults' Risk Practices From Hospital to Home: A Discourse Analysis.

PURPOSE: To understand risk-related practices of older adults returning home posthospitalization. RESEARCH DESIGN: Qualitative methods informed by critical discourse theory, designed to uncover linkages between broader social practices and peoples' talk and stories, were used. METHODS: Eight older adults, screened as high-risk from an inpatient cardiology unit, and six partners were interviewed face-to-face within three weeks of discharge. A discourse analysis of participants' accounts of risk was conducted: the cultural and social understandings or conceptual frameworks used to understand risk were identified. RESULTS: Ableism, a discourse in our society that privileges abledness, was found to permeate the data. Participants underscored that being abled was normal and being disabled was abnormal. Ableism, as a discourse or conceptual framework, compelled participants to appear and act abled, or to perform "compulsory abledness." That, in turn, produced their responses to risk: a pressure to preserve ableist identities created internal and external tensions related to objects and situations of risk and forced participants to use strategies to diminish and minimize risk. Participants created a new response-a position of "liminality" or in-between-where their accounts portrayed them as neither abled nor disabled. This discourse of liminality allowed them to reconcile tensions associated with risk. IMPLICATIONS: Critical discourse analysis sheds new light on older adults' risk practices. This approach challenges accepted ways of acting and thinking about what constitutes risk and produces possibilities for alternate ways of representing the same reality.

Creativity and Bipolar Disorder: Igniting a Dialogue.

Bipolar disorder (BD) has been related to heightened creativity, yet core questions remain unaddressed about this association. We used qualitative methods to investigate how highly creative individuals with BD understand the role of symptoms and treatment in their creativity, and possible mechanisms underpinning this link. Twenty-two individuals self-identified as highly creative and living with BD took part in focus groups and completed quantitative measures of symptoms, quality of life (QoL), and creativity. Using thematic analysis, five themes emerged: the pros and cons of mania for creativity, benefits of altered thinking, the relationship between creativity and medication, creativity as central to one's identity, and creativity's importance in stigma reduction and treatment. Despite reliance on a small sample who self-identified as having BD, findings shed light on previously mixed results regarding the influence of mania and treatment and suggest new directions for the study of mechanisms driving the creative advantage in BD.

Vascular Access Transition: Experiences of Patients on Hemodialysis.

An interpretive descriptive design was used to explore the experiences of patients on hemodialysis who had utilized and transitioned from a central venous catheter (CVC) to an arteriovenous fistula (AVF). Eleven patients participated in semi-structured interviews that were analyzed using constant comparison. Within the larger context of living with end stage renal disease, participants described their vascular access experiences according to three main themes: impact, coping, and influencing factors. Accesses had physical, psychosocial, and lifestyle-related impacts that participants coped with primarily by exercising control and gradually accepting, and were influenced by education, trust in healthcare providers, and family. Findings revealed a cumulative burden for many participants with AVF and the need to improve the patient experience of vascular accesses especially for those living in rural communities.

Visibility and Voice: Aboriginal People Experience Culturally Safe and Unsafe Health Care.

In Canada, cultural safety (CS) is emerging as a theoretical and practice lens to orient health care services to meet the needs of Aboriginal people. Evidence suggests Aboriginal peoples' encounters with health care are commonly negative, and there is concern that these experiences can contribute to further adverse health outcomes. In this article, we report findings based on participatory action research drawing on Indigenous methods. Our project goal was to interrogate practices within one hospital to see whether and how CS for Aboriginal patients could be improved. Interviews with Aboriginal patients who had accessed hospital services were conducted, and responses were collated into narrative summaries. Using interlocking analysis, findings revealed a number of processes operating to produce adverse health outcomes. One significant outcome is the production of structural violence that reproduces experiences of institutional trauma. Positive culturally safe experiences, although less frequently reported, were described as interpersonal interactions with feelings visibility and therefore, treatment as a "human being."

Using theatre to address mental illness stigma: a knowledge translation study in bipolar disorder.

BACKGROUND: Reduction of the stigma of mental illness is an international priority; arts- and contact-based approaches represent a promising mode of intervention. This project was designed to explore the impact of a one-woman theatrical performance on attitudes towards bipolar disorder (BD) on people with BD and healthcare providers. METHODS: A playwright and actress who lives with BD developed a stage performance - 'That's Just Crazy Talk' - targeting stigmatizing attitudes towards BD. Prospective, longitudinal and sequential mixed methods were used to assess the impact of the performance on people with BD (n = 80) and healthcare providers (n = 84). Qualitative interviews were conducted with 33 participants (14 people with BD and 19 healthcare providers). RESULTS AND DISCUSSION: Quantitatively, healthcare providers showed significantly improved attitudes immediately post-performance, but this change was not maintained over time; people with BD showed little quantitative change. Qualitatively, both people with BD and BD healthcare providers showed enduring and broadly positive changes. A theatrical presentation designed to reduce stigma produced immediate impact on healthcare providers quantitatively and significant qualitative impact on people with BD and healthcare providers. Additionally, the utility of using mixed-method approaches in mental health research was demonstrated.

Determining and broadening the definition of impact from implementing a rational priority setting approach in a healthcare organization.

Techniques to manage scarce healthcare resources continue to evolve in response to changing, growing and competing demands. Yet there is no standard definition in the priority setting literature of what might constitute the desired impact or success of resource management activities. In this 2006-09 study, using action research methodology, we determined the impact of implementing a formal priority setting model, Program Budgeting and Marginal Analysis (PBMA), in a Canadian health authority. Qualitative data were collected through post year-1 (n = 12) and year-2 (n = 9) participant interviews, meeting observation and document review. Interviews were analyzed using a constant comparison technique to identify major themes. Impact can be defined as effects at three levels: system, group, and individual. System-level impact can be seen in the actual selection of priorities and resource re-allocation. In this case, participants prioritized a list of $760,000 worth of investment proposals and $38,000 of disinvestment proposals; however, there was no clear evidence as to whether financial resources were reallocated as a result. Group and individual impacts, less frequently reported in the literature, included changes in priority setting knowledge, attitudes and practice. PBMA impacts at these three levels were found to be interrelated. This work argues in favor of attempts to expand the definition of priority setting success by including both desired system-level outcomes like resource re-allocation and individual or group level impacts like changes to priority setting knowledge, attitudes and practice. These latter impacts are worth pursuing as they appear to be intrinsic to successful system-wide priority setting. A broader definition of PBMA impact may also suggest conceptualizing PBMA as both a priority setting approach and as a tool to develop individual and group priority setting knowledge and practice. These results should be of interest to researchers and decision makers using or considering a formal priority setting approach to manage scarce healthcare resources.

Changing priority setting practice: the role of implementation in practice change.

BACKGROUND: Programme budgeting and marginal analysis (PBMA) is a priority setting approach that assists decision makers in choosing among resource demands. This paper describes and evaluates the process of implementing PBMA in a Canadian regional health authority, and draws out key lessons learned from this experience. METHODS: Qualitative data were collected through semi-structured participant interviews (twelve post year-1; nine post year-2), meeting attendance, and document review. Interview transcripts were analyzed using a constant comparison technique. Other data were analyzed to evaluate PBMA implementation. RESULTS: Desire for more clarity and for PBMA adaptations emerged as overarching themes. Participants desired greater clarity of their roles and how PBMA should be used to achieve PBMA's potential benefits. They argued that each PBMA stage should be useful independent of the others so that implementation could be adapted. To help improve clarity and ensure that resources were available to support PBMA, participants requested an organizational readiness and capacity assessment. CONCLUSION: We suggest tactics by which PBMA may be more closely aligned with real-world priority setting practice. Our results also contribute to the literature on PBMA use in various healthcare settings. Highlighting implementation issues and potential responses to these should be of interest to decision makers implementing PBMA and other evidence-informed practices.