Improving care and reducing stigma for borderline personality disorder: Stakeholder engagement to develop a research plan to evaluate a peer support intervention

Research co-leads:

  • Brianna Turner
    University of Victoria
  • Skye Barbic
    University of British Columbia 

Research user co-leads:

  • Deborah McKnight
    Borderline Personality Disorder Society of BC
  • Baylie McKnight
    Borderline Personality Disorder Society of BC
  • Wendy Young
    Island Health

Team members:

  • Jenny Cartwright
    BC SUPPORT Unit
  • Elizabeth Hallam
    Island Health
  • Hazel Meredith
    BC Schizophrenia Society
  • Wendy Mishkin 
    BC Schizophrenia Society
  • Susan Rich
    Island Health
  • Liz Wigfull
    Island Health

Borderline Personality Disorder (BPD) is a complex mental health condition associated with high rates of self-injury and suicidal behaviours. BPD is estimated to affect over 200,000 adults in BC. People with BPD experience challenges in accessing and engaging with mental health services due to high levels of stigma among mental health clinicians, frequent misunderstanding or misinformation about their diagnosis, inadequate access to evidence-based outpatient programs, and perceptions by clinicians and people with BPD that psychiatric care will not be effective. Together, these experiences often result in feelings of demoralization, hopelessness, and reluctance to engage with mental health services.

Peer support for people with mental health issues can improve their healthcare experiences and quality of life. However, a recent systematic review concludes that further research is needed to evaluate the effectiveness of peer support interventions. This project’s purpose is to bring together people with lived experience of BPD, mental health clinicians and decision-makers, and health researchers to lay the groundwork for a pilot trial to evaluate a peer support intervention for adults with BPD.

The activities will have three phases.

  • Phase 1 will consist of reviewing and summarizing evidence for peer support interventions.
  • Phase 2 will be gathering input on the needs and priorities of stakeholders to inform the peer support intervention.
  • Phase 3 will be developing a research plan to assess the feasibility and effectiveness of the peer support intervention.

These activities will achieve four outcomes. They will:

  1. Build research capacity in our team through training, co-development of the research plan, and collaborative grant writing.
  2. Increase knowledge of community priorities and needs of people with BPD.
  3. Create and summarize knowledge to guide decision-making around peer support interventions for people with BPD.
  4. Instill hope in people with BPD that community input will guide care improvements.

Significant commitments from each of the stakeholder groups support the feasibility of this work. The patient-led approach ensures activities will reflect the priorities of people with BPD and their families. This work strongly aligns with the BC Health System Priority of improving care for people living with mental illness.

HIV pre-exposure prophylaxis implementation to key priority populations across British Columbia: Towards HIV elimination

Co-leads:

Executive sponsor:

  • Mark Gilbert
    BCCDC

What are the barriers and facilitators to optimizing HIV Pre-Exposure Prophylaxis (PrEP) implementation in different geographies and priority populations across BC?

HIV PrEP is now universally covered in BC for those deemed at high risk for HIV; however, there is still sub-optimal uptake and adherence of PrEP for a wide range of reasons, including a lack of understanding of PrEP effectiveness, low perception of HIV risk, lack of awareness, and social stigma.

This project will synthesize available surveillance, administrative, and survey data to provide quarterly reports for different regions to provide crucial information on uptake of PrEP at initiation of program/intervention, changes over time, and trend analyses. For example, data from the BC Centre for Excellence in HIV/AIDS (BCCfE) DTPPrEP database on PrEP program users could be linked to inform PrEP referral and uptake based on risk indicators.

This research could also link to qualitative interviews and focus groups with providers and patients regarding health care, social and other barriers. Social community mapping activities could also be used within different communities/regions to better understand the health care networks and community members’ experience trying to navigate these to access PrEP.

Key outcomes from this project will be supporting health authorities, community groups, health care providers, and patients to use PrEP; and contributing towards HIV elimination.

Embedding health care technologies in real-world contexts: Developing the scale-up, spread and sustainability of assistive technologies in homes, communities and health systems

Co-leads:

Executive sponsor:

  • Heather Davidson
    BC Ministry of Health

Too often, promising technological innovations are not adopted, are abandoned, or face other serious challenges to their uptake, spread and sustainability in real-world contexts, including in people’s homes, community settings, or health systems more broadly.

This project aims to apply a new framework for theorizing and evaluating this phenomenon. The non-adoption, abandonment, scale-up, spread, and sustainability (NASSS) framework will be app/node/5126lied to several innovative assistive technologies (ATs) currently being developed in British Columbia for older adults.

By using a community-based participatory research methodology, this work will bring researchers, key health system decision-makers, technology developers, care-givers and older adults together into an inquiry team, focused on overcoming challenges to embedding ATs in end users’ real-world contexts and identifying positive factors that support their uptake, spread and sustainability.

This project will directly address the health system priority of services for seniors with complex medical conditions and the commitment to keeping seniors in their homes as long as safely possible (aging in place). The ATs in this project will be focused on improving the health and quality of life of older adults living with complex care needs, and multiple, chronic health conditions as well as the onset of frailty.

This research will also contribute to enhancing access to effective primary health care. ATs are a crucial medium for accomplishing this, as many of the innovations are aimed at making communication and interventions between older adults and their primary health care practitioners, including physicians, nurses and home support workers more effective.

This project will work towards directly improving the uptake, spread and sustainability of promising ATs in British Columbia, and will develop and sustain effective partnerships between the research community, the BC Ministry of Health, CanAssist and other relevant organizations.

Positive Living, Positive Homes: The online HIV housing toolkit

Co-leads:

Trainee:

  • Joanna Tulloch
    University of Victoria

Housing is an important structural determinant of health. Positive Living, Positive Homes (PLPH) is a longitudinal, qualitative, community-based research (CBR) study conducted in three British Columbian (BC) communities (Prince George, Kamloops, and Greater Vancouver). PLPH has investigated the complex relationship between housing and health for people living with HIV, and how policies and programs across BC interact with health and wellbeing of PLHIV.

In keeping with the tenets of CBR and the greater/meaningful involvement of people living with HIV/AIDS (GIPA/MIPA) principles, in each site, the team engaged people living with HIV, service providers, and other partners to participate as study team members in study implementation, data analysis, and knowledge translation activities.

Between June 2015 and October 2017, 99 adults living with HIV across the three BC study sites participated in baseline in-depth interviews for PLPH, with follow-up interviews one year later (72 people completed the follow-up interviews). In addition, in-depth, semi-structured interviews were conducted with 42 HIV and/or housing service providers and policy makers working in a range of community and government organizations at the three sites.

A key finding of the study related to the impact of stigma and discrimination across the housing spectrum for people living with HIV. Several participants were denied access to housing upon disclosure of living with HIV. Stigma and discrimination also drove some participants into isolation and away from care and resources related to their health and housing. Given this, the PLPH CBR team recommended that an essential KT tool would be an Online HIV Housing Toolkit that would increase access to housing information for people living with HIV and service providers who support people living with HIV, and ultimately help people living with HIV and service providers better navigate BC’s housing system.

PLPH is led by Dr. Catherine Worthington (Public Health and Social Policy, University of Victoria) and Evin Jones (Pacific AIDS Network (PAN), which holds CIHR HIV/AIDS CBR operating grant funds for the study (2014 – 2018)). PAN is a member-based coalition with almost 50 member organizations responding to HIV, HCV and related issues across BC. PAN is uniquely positioned to develop and host an Online HIV Housing Toolkit because they have developed and hosted many training and online tools for its member agencies and other key provincial partners.

Knowledge mobilization for reducing stigma and creating culturally safe primary care

Co-leads:

  • Bernadette Pauly
    University of Victoria
  • Bill Bullock
    Victoria Division of Family Practice
  • Karen Urbanoski
    CISUR / UVic

Trainee:

  • TBC

People who use substances (PWUS) face stigma and discrimination when accessing primary care. Cultural safety has been proposed to reduce provider and system-based stigma. Recently, this team completed a CIHR Strategy for Patient Oriented Research grant, which investigated the meaning of culturally safe primary care for PWUS, with a focus on those also experiencing structural disadvantages (e.g. poverty, racialization). This team comprises of PWUS (community researchers), academic researchers and knowledge users from the Victoria Division of Family Practice and Island Health. Findings included a concept map of cultural safety with eight core areas for reducing substance use related stigma in primary care.

The knowledge translation (KT) objectives are to:

  1. Raise awareness of the stigma experienced by PWUS in primary care.
  2. Share understandings of culturally safe primary care for this population.
  3. Support PWUS to advocate for their own primary care.
  4. Encourage PWUS, physicians and health planners to collaborate on strategies to improve cultural safety.
  5. Facilitate the participation of PWUS, physicians and health planners in developing and implementing policies and practices to improve cultural safety in primary care.

Besides local and provincial presentations with knowledge users, a postcard summarizing the findings was produced and distributed it to the community to support PWUS in advocating for their own primary care. We will complete additional plain-language KT materials for this population.

With this Reach award, the team will extend their reach to physicians, other healthcare providers, medical students, and senior level policy makers through two additional activities.

A video will be created to communicate the findings from the perspective of community researchers; it will be available on YouTube and actively promoted for use by senior level health executives and in healthcare curricula in BC post-secondary institutions.

An interactive workshop for primary care providers will be developed and delivered to address barriers and have facilitators implement culturally safe care. This workshop will be developed by the existing team and will be led by PWUS in collaboration with other team members. The workshop will be delivered through newly developed interdisciplinary primary care networks in Nanaimo, Campbell River and Port McNeil with a focus on identifying local practice changes. Besides enhancing the reach of findings from this completed project, the community researchers and graduate trainee will build their personal and organizational capacity for KT.

Develop a web-based childhood healthy weights early intervention program

Co-leads:

  • Sam Liu
    University of Victoria
  • Karen Strange
    Childhood Obesity Foundation

Trainee:

  • TBC

Childhood obesity is a major public health challenge in Canada. The BC Ministry of Health funded the knowledge-user (Childhood Obesity Foundation) to design and implement a “made in BC” community-based Childhood Healthy Weights Early Intervention Program (EIP) for children 8-12 years old. However, it has proven challenging to reach families who can’t attend in person. But with improved access to the Internet, web-based lifestyle programs may be well-suited to meet this challenge. In this project, the team will build an interactive web-based childhood obesity prevention program based on the EIP curriculum.

Aims:

  1. Develop an interactive web-based version of EIP for families whose children are off the healthy weight trajectory.
  2. Conduct usability testing to further enhance user experience.
  3. Collaborate with co-lead to disseminate the program across BC.

The web-based program will address major gaps in existing interventions, such as making the program accessible to non-traditional families; this includes Indigenous families, families from multi-cultural or intercultural backgrounds, and those of lower socioeconomic status. The program will also include sessions on sleep hygiene and screen use. This project will consist of three phases. In the first phase (0-5 months), an integrated-KT approach will be used to develop a web-based program (Aim 1). Integrated-KT helps ensure the web-based program is relevant and useful to all stakeholders (e.g. knowledge users, researchers, end-users). At the end of phase two (month 7), it is expected there will be a functional interactive web-based program that has undergone usability testing (Aim 2). In phase three (8-12 months), work will be done with the research user to disseminate the web-based intervention to diverse groups of families with children off the healthy weight trajectory (Aim 3).

This project has potential to be incredibly impactful as a web-based intervention can extend the reach of the Childhood Healthy Weights EIP across BC.

Optimizing PrEP and TasP adherence among substance using gay, bisexual, and other men who have sex with men

While increased access to HIV treatment and other health services has contributed to significant declines in HIV among several key populations in British Columbia (BC), it is estimated that as many as 1 in 6 gay, bisexual, and other men who have sex with men (gbMSM) will be diagnosed with HIV in their lifetime.

To address this health equity concern, BC recently expanded access to a once-a-day pill, called pre-exposure prophylaxis (PrEP), that can prevent HIV acquisition. However, gbMSM who use drugs report reduced adherence to PrEP, as well as to other antiretroviral therapies (ART) that could prevent transmission—thus reducing the overall efficacy of these policy-driven interventions.

Recognizing the diverse experiences of substance-using gbMSM, Dr. Card, along with an interdisciplinary team at the Community Based Research Centre for Gay Men’s Health, will leverage data from the Sex Now Survey to improve our understanding of:

  1. Which patterns of substance use contribute to poor adherence.
  2. How we can best address the factors that negatively impact this population.
  3. What obstacles might limit successful intervention among this population (e.g., feasibility and acceptability).

Working with community members and front-line service providers, Dr. Card will also participate in community consultations to develop an empirically-valid and community-based intervention that will improve adherence among gbMSM who use drugs.

Seniors Adding Life to Years (SALTY)

MSFHR is providing matching funds to support the work of a BC team lead by Dr. Kelli Stajduhar as part of the Canadian Institutes of Health Research (CIHR) Team Operating Grant: Late Life Issues initiative. Other funding partners include Nova Scotia Health Research Foundation, Alberta Innovates Health Solutions and Alzheimer Society of Canada.

Late life is a time when older adults and their caregivers face health and social issues that can impact their well-being. Everyone wants to live well in their final years, but this may be a challenge, particularly for people living in residential long-term care (LTC) settings.

A multi-disciplinary, multi-sectoral team of researchers, care providers, administrators, policy makers and older adults and their families from across Canada have come together to better understand how to add quality to years in the last phase of life for people in residential care and their caregivers. Seniors-Adding Life To Years (SALTY) is a four-year research project that will evaluate promising programs, practices and policies currently employed in four provinces – British Columbia, Alberta, Ontario and Nova Scotia – to support change in how decision makers and practitioners provide care and support in long-term care across the country.

Led by professor Janice Keefe at Mount Saint Vincent University and director of the Nova Scotia Centre on Aging, the study team will develop innovative strategies to understand and assess the impact of existing programs on quality of care and quality of life, with the goal of rolling out effective approaches in jurisdictions across Canada.

SALTY’s research program is organized in four interrelated research streams or problem areas, each applying a different perspective to the late-life trajectory in LTC. Dr. Kelli Stajduhar, of the University of Victoria’s (UVIC) School of Nursing and Institute on Aging and Lifelong Health is co-leading one of the streams. Stajduhar is joined by Drs. Denise Cloutier, also with the Centre of aging and UVIC’s department of geography, and Leah MacDonald, medical director of Island Health’s End-of-Life program. The BC research team is evaluating an implementation project entitled “Improving End-of-Life Outcomes in Residential Care” taking place in four Vancouver Island LTC homes. The goal of the implementation project is to facilitate a promising palliative approach in the context of care provided in LTC facilities for people with life-limiting conditions. Additionally, the team’s evaluation will provide evidence to support application of the project in other provinces.

Improving the safety of health information technology: From international knowledge to local application

Health information technology (HIT) safety is an important issue internationally. Clinician organizations (e.g. American Medical Association, Institute of Medicine) and health informatics organizations (e.g. Digital Health Canada) have made statements about HIT safety concerns and their implications.

This research will encompass several interconnected studies to develop a comprehensive strategy to improve HIT safety in Canada and internationally, to be conducted in a series of phases. 

  • Phase 1 of the research will involve a systematic review of HIT safety issues and approaches to improving the safety of HIT as well as its safe use.
  • In Phase 2, national incident reporting on HIT safety will be studied and analyzed from three countries (Canada, Finland and the United States).
  • Phase 3 will involve clinical simulations to understand how technology-induced errors arise and to identify best practices that could be used to improve and educate health professionals on HIT safety.

Evaluation of the role of FRMP on BDNF expression and signaling

Fragile-X syndrome (FXS) is the most common form of inherited intellectual disability and is the best characterized form of autism spectrum disorder. This genetic condition is caused by a mutation in the FMR1 gene, leading to the functional loss of FMR1 protein (FMRP). Besides being important for neuronal development, this protein also exerts a strong influence on synaptic plasticity. As a matter of fact, FMRP is highly expressed in the dentate gyrus (DG) of the hippocampus, one of the few regions of the adult brain where the birth of new neurons takes place. 

To understand this relationship, it is important to clarify the role of brain-derived neurotrophic factor (BDNF) in the pathophysiology of FXS. BDNF is an important regulator of neural circuit development and function, and is thus strongly implicated in the development and treatment of several neurological conditions. Interestingly, it has been shown that BDNF and FMRP may reciprocally regulate each other.

However, BDNF is a complex signaling molecule, and its pro- and mature forms can elicit opposing biological effects. Thus, to fully understand the interaction between FMRP and BDNF it is important to study both its pro- and mature forms. Dr. Bettio will investigate how FMRP regulates BDNF/pro-BDNF expression in distinct brain regions and how changes in BDNF expression contribute to hippocampal circuit dysfunction and plasticity defects in FXS. 

The results of this study will expand scientific knowledge about the molecular mechanisms implicated in FXS, and will be key in the development of future BDNF-based therapeutic strategies.