Research can be a way of listening, learning, and making meaning from what we experience together. This collection brings together publications, reports, presentations, and other knowledge products shaped by my work across patient-oriented research, health systems, equity, trauma- and resiliency-informed practice, and Medical Assistance in Dying (MAiD).
Much of this work sits at the intersection of evidence and lived experience asking not only what we know, but whose knowledge is valued, whose voices are heard, and how what we learn can shape better care and more equitable systems.
These are pieces of a larger journey of learning, reflection, and change.
Much of this work sits at the intersection of evidence and lived experience asking not only what we know, but whose knowledge is valued, whose voices are heard, and how what we learn can shape better care and more equitable systems.
These are pieces of a larger journey of learning, reflection, and change.
Projects, Publications & Reports
IYS Foundry
Associate Professor Dr. Skye Barbic and a large team of researchers have received a 4-year, $1.73M CIHR Project Grant for a study of integrated youth services (IYS), which include services to support young people’s health, employment, and housing. The goal of this grant is to further build on the collection and implementation of data at Foundry, a network of centres that provide youth services in BC; to do this, the team will engage with young people to learn about their experiences of accessing services, ask them what is most important to them so that relevant outcomes are measured, and determine how best to implement the data that Foundry tracks as it continually refines its services.
One notable aspect of this grant is the interdisciplinary aspect of its team. In addition to Dr. Barbic, the project includes Co-Principal Investigators Dr. Karen Tee, the Co-Executive Director at Foundry, whose background is in clinical psychology and youth mental health; Dr. Jason Sutherland, a Professor in the UBC School of Population and Public Health (SPPH) with expertise in measuring health systems; and Dr. Kirsten Marchand, an Assistant Professor in SPPH, who recently completed her postdoctoral training in mental health and substance use services for youth under Dr. Barbic’s supervision at Foundry.
Associate Professor Dr. Skye Barbic and a large team of researchers have received a 4-year, $1.73M CIHR Project Grant for a study of integrated youth services (IYS), which include services to support young people’s health, employment, and housing. The goal of this grant is to further build on the collection and implementation of data at Foundry, a network of centres that provide youth services in BC; to do this, the team will engage with young people to learn about their experiences of accessing services, ask them what is most important to them so that relevant outcomes are measured, and determine how best to implement the data that Foundry tracks as it continually refines its services.
One notable aspect of this grant is the interdisciplinary aspect of its team. In addition to Dr. Barbic, the project includes Co-Principal Investigators Dr. Karen Tee, the Co-Executive Director at Foundry, whose background is in clinical psychology and youth mental health; Dr. Jason Sutherland, a Professor in the UBC School of Population and Public Health (SPPH) with expertise in measuring health systems; and Dr. Kirsten Marchand, an Assistant Professor in SPPH, who recently completed her postdoctoral training in mental health and substance use services for youth under Dr. Barbic’s supervision at Foundry.
Bench to Bedside in BC: Leveraging the Life Sciences to Drive Innovation in Women’s Health
Bench to Bedside in BC: Leveraging the Life Sciences to Drive Innovation in Women's Health, will identify and engage cross-sector and cross-CIHR-pillar partnerships to accelerate the creation, translation, and implementation of basic/biomedical science (Pillar 1) discoveries. The planned activities engage researchers, trainees, clinicians, health systems representatives, and interest holders connected to British Columbia’s (BC) life sciences community who can enable women’s health research opportunities in their respective roles.
Bench to Bedside in BC: Leveraging the Life Sciences to Drive Innovation in Women's Health, will identify and engage cross-sector and cross-CIHR-pillar partnerships to accelerate the creation, translation, and implementation of basic/biomedical science (Pillar 1) discoveries. The planned activities engage researchers, trainees, clinicians, health systems representatives, and interest holders connected to British Columbia’s (BC) life sciences community who can enable women’s health research opportunities in their respective roles.
Resilience and Engagement in Crisis: Fostering Trauma-Informed Care and Patient Partnerships Into the Future
Abstract
The COVID-19 pandemic has significantly disrupted patient engagement and exposed long-standing inequities within Canada's healthcare system. As a patient partner and caregiver, the author reflects on the exacerbated challenges during the pandemic, particularly for hardly reached communities and those managing chronic conditions. The crisis highlighted the absence of opportunities for patient partnership, with healthcare organizations halting engagement activities despite an increased need for communication and community involvement. The pandemic underlined the necessity of trauma-informed care and engagement-capable environments (ECE). To address these challenges, the author advocates for integrating trauma-informed practices with ECEs, thereby promoting a healthcare model that is both structurally supportive and responsive to individual trauma and resilience. By focusing on compassion, recognizing trauma and fostering engagement, such an approach could enhance patient outcomes and create a more adaptive, inclusive healthcare environment.
Full Text at Longwoods
Abstract
The COVID-19 pandemic has significantly disrupted patient engagement and exposed long-standing inequities within Canada's healthcare system. As a patient partner and caregiver, the author reflects on the exacerbated challenges during the pandemic, particularly for hardly reached communities and those managing chronic conditions. The crisis highlighted the absence of opportunities for patient partnership, with healthcare organizations halting engagement activities despite an increased need for communication and community involvement. The pandemic underlined the necessity of trauma-informed care and engagement-capable environments (ECE). To address these challenges, the author advocates for integrating trauma-informed practices with ECEs, thereby promoting a healthcare model that is both structurally supportive and responsive to individual trauma and resilience. By focusing on compassion, recognizing trauma and fostering engagement, such an approach could enhance patient outcomes and create a more adaptive, inclusive healthcare environment.
Full Text at Longwoods
Development of the Preferred Components for Co-Design in Research Guideline and Checklist: Protocol for a Scoping Review and a Modified Delphi Process
Abstract
Background: There is increasing evidence that co-design can lead to more engaging, acceptable, relevant, feasible, and even effective interventions. However, no guidance is provided on the specific designs and associated methods or methodologies involved in the process. We propose the development of the Preferred Components for Co-design in Research (PRECISE) guideline to enhance the consistency, transparency, and quality of reporting co-design studies used to develop complex health interventions.
Objective: The aim is to develop the first iteration of the PRECISE guideline. The purpose of the PRECISE guideline is to improve the consistency, transparency, and quality of reporting on studies that use co-design to develop complex health interventions
Methods: The aim will be achieved by addressing the following objectives: to review and synthesize the literature on the models, theories, and frameworks used in the co-design of complex health interventions to identify their common elements (components, values or principles, associated methods and methodologies, and outcomes); and by using the results of the scoping review, prioritize the co-design components, values or principles, associated methods and methodologies, and outcomes to be included in the PRECISE guideline.
Results: The project has been funded by the Canadian Institutes of Health Research.
Conclusions: The collective results of this project will lead to a ready-to-implement PRECISE guideline that outlines a minimum set of items to include when reporting the co-design of complex health interventions. The PRECISE guideline will improve theconsistency, transparency, and quality of reports of studies. Additionally, it will include guidance on how to enact or enable the values or principles of co-design for meaningful and collaborative solutions (interventions). PRECISE might also be used by peer reviewers and editors to improve the review of manuscripts involving co-design. Ultimately, the PRECISE guideline will facilitate more efficient use of new results about complex health intervention development and bring better returns on research investments.
Abstract
Background: There is increasing evidence that co-design can lead to more engaging, acceptable, relevant, feasible, and even effective interventions. However, no guidance is provided on the specific designs and associated methods or methodologies involved in the process. We propose the development of the Preferred Components for Co-design in Research (PRECISE) guideline to enhance the consistency, transparency, and quality of reporting co-design studies used to develop complex health interventions.
Objective: The aim is to develop the first iteration of the PRECISE guideline. The purpose of the PRECISE guideline is to improve the consistency, transparency, and quality of reporting on studies that use co-design to develop complex health interventions
Methods: The aim will be achieved by addressing the following objectives: to review and synthesize the literature on the models, theories, and frameworks used in the co-design of complex health interventions to identify their common elements (components, values or principles, associated methods and methodologies, and outcomes); and by using the results of the scoping review, prioritize the co-design components, values or principles, associated methods and methodologies, and outcomes to be included in the PRECISE guideline.
Results: The project has been funded by the Canadian Institutes of Health Research.
Conclusions: The collective results of this project will lead to a ready-to-implement PRECISE guideline that outlines a minimum set of items to include when reporting the co-design of complex health interventions. The PRECISE guideline will improve theconsistency, transparency, and quality of reports of studies. Additionally, it will include guidance on how to enact or enable the values or principles of co-design for meaningful and collaborative solutions (interventions). PRECISE might also be used by peer reviewers and editors to improve the review of manuscripts involving co-design. Ultimately, the PRECISE guideline will facilitate more efficient use of new results about complex health intervention development and bring better returns on research investments.
Trauma-Informed Care Practices to Support Caregivers of Children with Severe Illness: Protocol for A Systematic Review
Abstract
Family caregivers of children with life-limiting illness or chronic complex medical conditions experience
signicant psychological challenges related to the diagnosis, treatment, and care of their child. Trauma-
informed (or trauma- and resiliency-informed) care interventions targeted at directly preventing or
managing trauma-related symptoms using psychological approaches have potential to improve distress
and distress-related symptoms among caregivers. The overall objective of this parent-led systematic
review is to synthesize the literature on the effect of trauma-informed care services for the prevention and
management of traumatic stress and related symptoms in the family caregivers of children with life-
limiting or complex medical conditions.
Methods
Our systematic review will identify studies reviewing the effectiveness of trauma-informed care services
for the prevention and management of traumatic stress and related symptoms in family caregivers. We
will search Medline, PsycInfo, Embase, CINAHL, Cochrane CENTRAL, the Applied Social Sciences Index
and Abstracts, and Social Services Abstracts databases for articles describing trauma-informed care
interventions for these family caregivers. All titles and abstracts will be screened independently and in
duplicate with discrepancies resolved by caregivers with lived experience. The same process will be used
for full-text articles. Data abstraction will also be conducted independently and in duplicate with team
members who are caregivers resolving discrepancies. Data analysis will involve syntheses of study
results to better understand intervention effect and related complexities.
Discussion
This family caregiver initiated- and co-lead systematic review will identify, appraise, and report on the
effectiveness of trauma-informed care interventions aiming to prevent or manage traumatic stress and
related symptoms in the family caregivers of children with life limiting illnesses. This review will provide
needed data to inform the co-design and implementation of high-quality care services aimed at health
improvements for families of children with life-limiting or chronic complex medical conditions.
Abstract
Family caregivers of children with life-limiting illness or chronic complex medical conditions experience
signicant psychological challenges related to the diagnosis, treatment, and care of their child. Trauma-
informed (or trauma- and resiliency-informed) care interventions targeted at directly preventing or
managing trauma-related symptoms using psychological approaches have potential to improve distress
and distress-related symptoms among caregivers. The overall objective of this parent-led systematic
review is to synthesize the literature on the effect of trauma-informed care services for the prevention and
management of traumatic stress and related symptoms in the family caregivers of children with life-
limiting or complex medical conditions.
Methods
Our systematic review will identify studies reviewing the effectiveness of trauma-informed care services
for the prevention and management of traumatic stress and related symptoms in family caregivers. We
will search Medline, PsycInfo, Embase, CINAHL, Cochrane CENTRAL, the Applied Social Sciences Index
and Abstracts, and Social Services Abstracts databases for articles describing trauma-informed care
interventions for these family caregivers. All titles and abstracts will be screened independently and in
duplicate with discrepancies resolved by caregivers with lived experience. The same process will be used
for full-text articles. Data abstraction will also be conducted independently and in duplicate with team
members who are caregivers resolving discrepancies. Data analysis will involve syntheses of study
results to better understand intervention effect and related complexities.
Discussion
This family caregiver initiated- and co-lead systematic review will identify, appraise, and report on the
effectiveness of trauma-informed care interventions aiming to prevent or manage traumatic stress and
related symptoms in the family caregivers of children with life limiting illnesses. This review will provide
needed data to inform the co-design and implementation of high-quality care services aimed at health
improvements for families of children with life-limiting or chronic complex medical conditions.
Psychological Interventions Addressing Trauma-Related Distress Among Family Caregivers of Children with Serious Illness: A Mixed-Methods Systematic Review
**Publication date TBD
Abstract
Background: Family caregivers of children with life-limiting illness or chronic complex medical conditions frequently experience traumatic stress and psychological distress. Psychological interventions designed to address trauma-related distress have the potential to improve caregiver psychological well-being and related psychosocial outcomes. This review synthesized evidence regarding such interventions among family caregivers of children with serious illness by evaluating reported caregiver health outcomes, describing intervention characteristics, and exploring caregiver experiences.
Methods: Seven databases were searched. Eligible studies evaluated psychological interventions for family caregivers of children younger than 25 years with serious medical conditions. Two reviewers independently screened studies and charted data. Quantitative and qualitative findings were summarized descriptively and synthesized narratively.
Results: Sixty-seven studies evaluating 71 interventions were included. Most studies were randomized controlled trials and focused on pediatric oncology populations. Improvements in caregiver outcomes were most frequently reported for post-traumatic stress symptoms (67.5%), anxiety (62.5%), and depression (58.5%). Caregivers consistently valued emotional support, flexibility, accessibility, and strong therapeutic relationships, while time constraints and competing caregiving responsibilities were the most common barriers to participation.
Discussion: This family caregiver-initiated and co-led review suggests psychological interventions addressing trauma-related distress may improve a range of psychosocial outcomes among family caregivers of children with serious illness. However, evidence remains concentrated in mothers and pediatric oncology populations and is highly heterogeneous. Future research should determine which intervention characteristics are most strongly associated with benefit and evaluate interventions across more diverse pediatric populations.
**Publication date TBD
Abstract
Background: Family caregivers of children with life-limiting illness or chronic complex medical conditions frequently experience traumatic stress and psychological distress. Psychological interventions designed to address trauma-related distress have the potential to improve caregiver psychological well-being and related psychosocial outcomes. This review synthesized evidence regarding such interventions among family caregivers of children with serious illness by evaluating reported caregiver health outcomes, describing intervention characteristics, and exploring caregiver experiences.
Methods: Seven databases were searched. Eligible studies evaluated psychological interventions for family caregivers of children younger than 25 years with serious medical conditions. Two reviewers independently screened studies and charted data. Quantitative and qualitative findings were summarized descriptively and synthesized narratively.
Results: Sixty-seven studies evaluating 71 interventions were included. Most studies were randomized controlled trials and focused on pediatric oncology populations. Improvements in caregiver outcomes were most frequently reported for post-traumatic stress symptoms (67.5%), anxiety (62.5%), and depression (58.5%). Caregivers consistently valued emotional support, flexibility, accessibility, and strong therapeutic relationships, while time constraints and competing caregiving responsibilities were the most common barriers to participation.
Discussion: This family caregiver-initiated and co-led review suggests psychological interventions addressing trauma-related distress may improve a range of psychosocial outcomes among family caregivers of children with serious illness. However, evidence remains concentrated in mothers and pediatric oncology populations and is highly heterogeneous. Future research should determine which intervention characteristics are most strongly associated with benefit and evaluate interventions across more diverse pediatric populations.
Beyond the Binary : Driving gender equity through gender inclusive practices in women’s health research
People across the gender spectrum benefit from research framed as “women’s health”. And, cis women benefit from research that includes people with diverse gender and sex characteristics.
In 2019, the WHRI began featuring examples of gender-equitable research practice through our Beyond the Binary web stories. These stories showcase experiences of researchers Dr. Michelle Chan and Dr. Lori Brotto in creating inclusive health research environments.
In 2020, the WHRI saw a significant increase in requests for language consultations on grants, recruitment materials, and data collection tools. The next step became clear – a larger conversation with health research partners. So, the WHRI submitted an application for a Michael Smith Health Research BC for a Convening & Collaborating (C2) grant to support the Beyond the Binary project.
In 2021, the project received the funding to inform guidance for gender-equitable practices within BC’s women’s health research community began. Led by BC Pomeroy and Angela Kaida, this project of emergent design:
Developed understanding of the current landscape of gender-equitable practices through a literature review and environmental scan
Established and convened two steering committees: a Community Steering Committee (CSC), and a Research Steering Committee (RSC)
Co-created content to inform resources to support the research community.
The CSC was always engaged first to build accountability into the guidance provided. The RSC was subsequently engaged to gauge acceptability.
From 2022 to 2023, the content was transformed into the “Beyond the Binary in BC: A Guide. “
In June 2023, the Beyond the Binary in BC team, led by Dr. Lori Brotto, was awarded a Canadian Institutes of Health Research Planning and Dissemination Grant to scale this work to a national level. With collaboration from our existing community partners and alongside the Partnership for Women’s Health Research Canada, pan-Canadian representation of researchers engaged in women’s health and community partners have been mobilized.
The goal of Beyond the Binary Canada is to develop a nationally relevant, and feasible guidance and resource package to support health researchers and health research institutions in their commitments to conducting gender equitable health research for women, trans, and non-binary people. The updated guide, in French and English is linked below.
Beyond the Binary in Canada Guide (English)
Guide Au-delà de la binarité au Canada (French)
People across the gender spectrum benefit from research framed as “women’s health”. And, cis women benefit from research that includes people with diverse gender and sex characteristics.
In 2019, the WHRI began featuring examples of gender-equitable research practice through our Beyond the Binary web stories. These stories showcase experiences of researchers Dr. Michelle Chan and Dr. Lori Brotto in creating inclusive health research environments.
In 2020, the WHRI saw a significant increase in requests for language consultations on grants, recruitment materials, and data collection tools. The next step became clear – a larger conversation with health research partners. So, the WHRI submitted an application for a Michael Smith Health Research BC for a Convening & Collaborating (C2) grant to support the Beyond the Binary project.
In 2021, the project received the funding to inform guidance for gender-equitable practices within BC’s women’s health research community began. Led by BC Pomeroy and Angela Kaida, this project of emergent design:
Developed understanding of the current landscape of gender-equitable practices through a literature review and environmental scan
Established and convened two steering committees: a Community Steering Committee (CSC), and a Research Steering Committee (RSC)
Co-created content to inform resources to support the research community.
The CSC was always engaged first to build accountability into the guidance provided. The RSC was subsequently engaged to gauge acceptability.
From 2022 to 2023, the content was transformed into the “Beyond the Binary in BC: A Guide. “
In June 2023, the Beyond the Binary in BC team, led by Dr. Lori Brotto, was awarded a Canadian Institutes of Health Research Planning and Dissemination Grant to scale this work to a national level. With collaboration from our existing community partners and alongside the Partnership for Women’s Health Research Canada, pan-Canadian representation of researchers engaged in women’s health and community partners have been mobilized.
The goal of Beyond the Binary Canada is to develop a nationally relevant, and feasible guidance and resource package to support health researchers and health research institutions in their commitments to conducting gender equitable health research for women, trans, and non-binary people. The updated guide, in French and English is linked below.
Beyond the Binary in Canada Guide (English)
Guide Au-delà de la binarité au Canada (French)
Engaging diverse patients in a diverse world: the development and preliminary evaluation of educational modules to support diversity in patient engagement research
Abstract
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.
Abstract
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.
