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Co-leads:
- Bernadette Pauly
University of Victoria
- Bill Bullock
Victoria Division of Family Practice
- Karen Urbanoski
CISUR / UVic
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Trainee:
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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:
- Raise awareness of the stigma experienced by PWUS in primary care.
- Share understandings of culturally safe primary care for this population.
- Support PWUS to advocate for their own primary care.
- Encourage PWUS, physicians and health planners to collaborate on strategies to improve cultural safety.
- 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.
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Co-leads:
- Sam Liu
University of Victoria
- Karen Strange
Childhood Obesity Foundation
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Trainee:
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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:
- Develop an interactive web-based version of EIP for families whose children are off the healthy weight trajectory.
- Conduct usability testing to further enhance user experience.
- 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.
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Co-leads:
- Caroline Sanders
University of Northern British Columbia
- Joanne Hall
Congenital Adrenal Hyperplasia – Living with CAH Support Group, UK
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Trainee:
- Erika Belanger
University of Northern British Columbia
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Following early analysis of data from the Women Health Research Institute (WHRI) grant focusing on wellness in women with congenital adrenal hyperplasia (CAH), it was obvious that there was a need to share, translate, and mobilize knowledge into public and professional domains. Early findings show that menstrual wellness for women with CAH is constrained by the ongoing menstrual taboos, similar for all women. An additional stress factor for women with CAH is the variation in genital anatomy, cycle duration, and the impact of metabolic processes and steroid medication management.
Taboo and limited menstrual information and resources for parents of younger children, patients and health care providers result in knowledge gaps; this limits early and ongoing body wellness conversations. Introducing health concepts linked to menstrual wellness early on can help to reduce stigma and isolation, which builds resilience to support physical health and protect mental wellbeing.
The aim is to build on HealthLinkBC’s “standard” menstrual cycle information by designing a simple, interactive (info)graphic that will lay out the important factors of concern to women with CAH. It is hoped that women will use this KT product when discussing their menstrual (ir)regularities with health care providers (e.g. in specialist and primary care settings). To strengthen product credibility, this interactive (info)graphic will be presented at a WHRI workshop to CAH stakeholders (e.g. women with CAH, parents, health care providers, educators, and advocates); feedback on design, functionality, and content will be incorporated.
This KT work will be launched with provincial events linked to Women’s Day and Rare Disorder Day 2019. In addition, this KT resource will be made freely available via domestic (e.g. Canadian Organization of Rare Disorders (CORD)) and international advocacy and support groups (e.g. dsdfamilies, living with CAH etc.).
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Co-leads:
- Fiona MacDonald
University of the Fraser Valley
- Tannis Driedger
Patient partner
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Trainee:
- Dempsey Wilford
University of Victoria
- Julie Morden
University of the Fraser Valley
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Increasingly, jurisdictions are adopting “apology legislation” that allows clinicians to apologize to patients when an adverse event occurs while disallowing the introduction of the apology in a liability case as evidence of fault or liability.
Apology legislation exists in Canada, Australia, the USA and the UK. In Canada, nine provinces and two territories have adopted apology legislation (BC first adopted in 2006). An apology is defined in Canadian legislation as “Encompassing an expression of sympathy and regret and a statement that one is sorry, or any other words or actions indicating contrition or commiseration, whether or not the words or actions admit or imply an admission of fault” (CMPA website). While apology legislation is established in Canada, little is known about the impact of apologies on various stakeholders, or the impact the legislation has on health care more generally. The existing literature on medical apologies is largely focused on the American context and is often limited to the potential impacts rather than the actual impacts as they are experienced by stakeholders. It is unknown whether impacts are differentiated for specific patient groups, such as Indigenous populations whom, research consistently shows, often experience highly differentiated processes and outcomes in health care.
Data was collected in two provinces (BC and MB) from qualitative interviews with patients who experienced a medical error and who did or did not receive an apology. Data was also collected via interviews with patient safety experts, clinicians, health care administrators, and medical school administrators. There is rich data providing original insight into how and whether giving/receiving an apology improves learning, accountability, patient safety, and healing (for both the patient and clinician). With this data, YouTube videos, op-eds and blog posts will be developed to share the findings with patients, clinicians, and administrators. The dissemination products will emphasize these themes: 1) Various traumas associated with medical errors/mistreatment; 2) The components of a meaningful medical apology for clinicians and administrators; 3) Impacts of apology on both patient and clinician; 4) Indigenous perspectives on medical apologies.
The findings will be presented at the 2019 BCPSQC Quality Forum. Participants at this event include physicians, nurses, pharmacists, allied health professionals and students.
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Co-leads:
- Mary Jung
University of Bristish Columbia Okanagan
- Karlene Sewell
YMCA Okanagan
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Trainee:
- Tineke Dineen
University of British Columbia Okanagan
- Corliss Bean
University of British Columbia Okanagan
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Translating effective health interventions into the community are often not applied in practice. The gap between research and practice is concerning for community members who can benefit from early access to effective health interventions. Knowledge translation (KT) activities and community partnerships are demonstrated methods to close the gap, yet there is a need for quality partnerships to ensure research findings are implemented into communities so it ensures sustainability, rigour and quality programming through planning, preparation and time to foster the partnership.
KT events can include dissemination and uptake of research evidence to further inform programming. Through a partnership between the YMCA of Okanagan, a leader in community programming, and the Small Steps for Big Changes (SSBC) research team, a group with an evidence-based program for improving health and exercise adherence in individuals with prediabetes, an influential partnership began with a goal to translate the SSBC program into the YMCA.
In this proposed work, the event aims to formally unite the two partners and establish a common goal, mission, vision and values. A key outcome is to establish a plan for the pilot of embedding the SSBC program into three YMCA locations within the Okanagan community. This plan is significant to the successful translation and sustainability of the program. Key to the success of the partnership is agreement on all aspects of the translation. The proposed work includes multiple translation events to work towards a long-term, successful partnership.
Vital to the collaborative nature of the partnership, feedback from YMCA of Okanagan managers, staff, past participants and present SSBC trainers will optimize the planning stages. Input from all parties will be collected and combined into a suitable plan, an appropriate training program, timeline for the translation, usability of program documents by YMCA staff and the respective roles of the YMCA and SSBC research team in program sustainability and ongoing fidelity. Finally, a video knowledge product will document the process of the partnership, with information about the program, outcomes and the partnership using video footage during the meetings and voice-over from SSBC alumni and YMCA staff. The knowledge product will be used for promotional material for distribution via each partner’s respective media platforms.
The Stigma and Resilience Among Vulnerable Youth Centre (SARAVYC) has identified lesbian, gay, bisexual, trans, and queer (LGBTQ) health disparities for a range of physical and mental health outcomes. This work has also documented lower levels of family- and school-connectedness –– two key social supports that are protective factors for youth. East Asian LGBTQ youth are nearly 30 times more likely to face harassment and discrimination than their heterosexual peers, and are at higher risk of problematic drug and alcohol use. It may be especially difficult for these youth to find support within their families and communities, as LGBTQ topics can be stigmatizing for East Asian families.
Therefore, SARAVYC and Options for Sexual Health (Opt) will create and present culturally relevant materials to East Asian parents, youth and families, on youth sexual health and create supportive environments for LGBTQ youth. This team will work with SARAVYC’s East Asian advisory group to develop and present two evening events in English with simultaneous interpretation in Cantonese and Mandarin, an online slide deck, and education materials, translated into Cantonese-traditional Chinese, Mandarin-Simplified Chinese, Japanese, and Korean, which can be circulated in Opt offices and online. These knowledge translation activities will help East Asian parents support their adolescents' successful development of healthy relationships and sexual health overall, with information about LGBTQ youth integrated into the content.
There are three key objectives:
- Provide information in culturally appropriate and sensitive formats accessible to non-English speakers/readers.
- Create opportunities for parents to engage with experts in their own language.
- Develop awareness about LGBTQ health disparities among East Asian youth and increase knowledge of how parents can support their LGBTQ children.
To achieve these objectives, advisory meetings will be held in September and December to develop the content and format of the events and materials, and finalize the materials for translation. Event details will be confirmed in February and then advertising begins. Events are tentatively planned for April and May.
The event and materials will create a common vocabulary for parents to better speak with their youth about their sexual health and help support LGBTQ inclusivity. Materials will bridge language and cultural barriers often experienced by East Asians seeking advice and health care, and promote greater inclusivity and support in Opt clinics.
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Co-leads:
- Paul Yong
University of British Columbia
- Jessica Sutherland
BC Women's Hospital + Health Centre
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Trainee:
- Natasha Orr
University of British Columbia
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One in 10 reproductive-aged women have endometriosis (where endometrial cells abnormally grow outside the uterus). This can lead to menstrual cramps and pain during bowel movements, pelvic movements, and vaginal penetration. This project focuses on deep penetration pain during sexual activity, which profoundly affects relationships and the sexual quality of life of women with endometriosis.
The interdisciplinary team at the BC Women’s Centre for Pelvic Pain and Endometriosis uses surgical-medical treatments, cognitive behavioural and mindfulness based therapies, and physiotherapy to treat women with endometriosis and sexual pain. The centre also has an active CIHR-funded clinical and translational research program, with a focus on sexual pain. Endometriosis-associated sexual pain may be due to endometriosis lesions and/or central nervous system sensitization and treatment efficacy may depend on the specific cause of the pain. The concept that pain may be due to central nervous system changes, and not directly to the endometriosis, may be difficult for some patients to understand. Therefore, there will be a one-day workshop explaining the multifactorial causes of sexual pain and patients will be provided with tools to manage their pain. The aim is to include women from the centre and women from the community along with their partners. This workshop will be created in collaboration with patient partners from start to finish, ensuring the learning objectives are patient-informed and the event is appropriate for the target audience.
The goals of this project are to:
- Develop a one-day workshop targeted to patients with endometriosis and their partners.
- Measure the impact of the workshop on patient understanding by using a short self-reported questionnaire created with patient partners.
The long-term goal is to effectively translate research findings on central nervous sensitization to patients with endometriosis so they gain a better understanding of the causes of their sexual pain.
- Primary audience: women (patients).
- Secondary audience members: patient partners/families, hospital foundation, researchers, physicians.
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Co-leads:
- Shannon Bredin
University of British Columbia
- Rosalin Miles
Indigenous Physical Activity & Cultural Circle
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Trainee:
- Erin Shellington
University of British Columbia
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Community Health Representatives (CHRs) are the contacts between community members and health care practitioners in BC’s Indigenous communities. CHRs play an important role in the health care system for Indigenous health; they provide cultural support and health education within these communities.
Improving lifestyle behaviours is an effective way to reduce the burden caused by obesity, diabetes, cardiovascular disease, and conditions that affect mental wellbeing within Indigenous peoples. However, there is limited accessibility to effective, culturally appropriate, Indigenous-led and community-based health and wellness resources for CHRs. Therefore, this project will create a resource toolkit for CHRs in BC’s rural Indigenous communities, which is Indigenous-led and integrates and respects the language, culture, and traditions of Indigenous communities.
The toolkit will be developed through co-creation activities with CHRs and Indigenous communities in partnership with Indigenous Studies in Kinesiology (School of Kinesiology, UBC) and the Indigenous Physical Activity and Cultural Circle.
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Co-leads:
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Trainee:
- Shaina Lee
University of British Columbia
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Over 11 percent of cancers and 9 percent of cancer deaths in women are from reproductive cancers. This represents a substantial disease burden; however, public dialogue levels and research funding doesn’t reflect this. Breast cancer, which has more public awareness, received 60 percent higher investment between 2005 and 2014 in research compared to reproductive cancers on a per case basis; this gap is even greater when comparison is based on cancer-related deaths. This team will create knowledge dissemination tools focusing on reproductive cancer prevention, to raise public awareness, and start a discussion about reproductive cancers. Public education could improve outcomes and lead to a national focus and investment in clinical care and research on reproductive cancers.
Prevention initiatives could reduce 1/4 of the 12,000 reproductive cancers that occur in Canada each year. Videos will be created and aimed at the target audience (women who can benefit from prevention), focused on three areas:
- Opportunistic salpingectomy (removal of fallopian tubes during hysterectomy or other pelvic surgery) to prevent ovarian cancer.
- Cervical cancer screening and prevention.
- Genetic testing for inherited risk factors.
These will be short, animated videos, less than three minutes, and succinctly describe the preventive strategy and current state of research. They will be posted on the OVCARE (BC’s multidisciplinary research group focusing on reproductive cancers) website (www.ovcare.ca) and linked through other outlets (other websites and online news sites, social media). A parallel set of videos will be created to convey the same information but designed for selected patient waiting areas and silenced to minimize disruption. Once created, these videos can be used at speaking events, fundraising events, and other venues. Along with inadequate funding for prevention research, participation in prevention activities has been identified as a barrier to uptake of prevention strategies. Education is one strategy to increase uptake.
This team has a strong track record of successful educational campaigns, informing clinicians and the public about opportunistic salpingectomy in 2010, and more recently to inform health care providers about new molecular stratification of endometrial cancers. It is hoped that this initiative will increase uptake of prevention activities and lead to greater public awareness of reproductive cancers.
BC is facing a public health emergency due to the high number of overdose deaths. In 2017 alone, over 1,448 people died from drug overdose.
- According to BC Coroner’s services, 58 percent of overdose deaths occurred in private residences (e.g. garage, trailer homes) and 27 percent in other housing facilities (e.g. rooming house, hotel/motel, homeless shelter, single room occupancy (SRO), drug recovery house, halfway house, group home, senior residence). The number of deaths in these housing facilities have increased from 19 percent (2016) to 27 percent (2017).
- Coast Mental Health (CMH), which manages 37 housing facilities with approximately 4,000 residents across the Lower Mainland, have lost many residents due to overdose.
Staff at these facilities work closely with residents, creating an opportunity to provide support services. The UBC Addictions and Concurrent Disorders Group has partnered with CMH to facilitate implementation of evidence-based solutions within the housing facilities to prevent further overdose incidents. This partnership included gaining a better understanding, a clinical assessment of high-risk residents, and an opportunity to create a more appropriate service model.
Risk management of opioid overdose is complex and comes with risk factors spanning across health and social determinants of health. Communicating such complexities require knowledge exchange tools that engage and guide an individual through a logical pathway. This team will develop and distribute a 10-minute documentary that communicates the research evidence on the major risk factors of overdose fatalities and risk management strategies that housing facilities can implement.
The three major risk factors are unsupervised injection, concurrent disorders, and low opioid tolerance. This short documentary will be co-developed with CMH to engage housing providers through dynamic audiovisuals, narratives of those most affected by the overdose crisis, and animations. It will be distributed through a screening event and online channels (e.g. websites, YouTube, etc.). The knowledge acquired from this documentary will support non-profit housing organizations to integrate evidence-based risk management strategies into their practice to prevent further fatal and non-fatal overdose incidents.
