Search

Background: Many community-based HIV research studies incorporate principles of greater involvement and meaningful engagement of people living with HIV (GIPA/MEPA) by training people with HIV as peer researchers. Unfortunately, there are still some aspects of research (e.g., quantitative data analysis and interpretation) where many projects fall short in realizing GIPA/MEPA principles. To address these gaps, we developed an eight-week training course that aimed to build the capacity of peer researchers around the understanding and interpretation of quantitative data and incorporating lived experience to increase the impact of the knowledge transfer and exchange phase of a study. Methods: Peer researchers (n = 8) participated from British Columbia, Alberta, and Ontario and lessons learned from the training were implemented throughout the dissemination of research findings from the People Living with HIV Stigma Index study. This paper presents the curriculum and main training components, course evaluation results, and challenges and lessons learned. The manuscript was created in collaboration with and includes the perspectives of both the peer researchers involved in the training, as well the course facilitators. Results: Throughout the course, peer researchers' self-assessed knowledge and understanding of quantitative research and data storytelling improved and, through interactive activities and practice, they gained the confidence to deliver a full research presentation. This improved their understanding of research findings, which was beneficial for discussing results with community partners and study participants. The peer researchers also agreed that learning about integrating lived experience with quantitative data has helped them to make research findings more relatable and convey key messages in a more meaningful way. Conclusions: Our training curriculum provides a template for research teams to build capacity in areas of research where peer researchers and community members are less often engaged. In doing so, we continue to uphold the principles of GIPA/MEPA and enhance the translation of research knowledge in communities most greatly affected. Plain English Summary: Engaging patient groups or community members is commonplace in HIV research where people living with HIV are trained as peer researchers. There are still however some gaps where community members are less engaged, especially in quantitative data analysis. This presents a barrier preventing them from being meaningfully engaged in research about them. To build capacity in these areas, we designed an eight-week online course that taught peer researchers about quantitative data analysis and interpretation with a focus on concepts that would be important for talking about key messages from research findings. This was used to enhance the knowledge translation and dissemination initiatives for the People Living with HIV Stigma Index study—a survey tool containing quantitative measures examining stigma and related health factors. Peer researchers agreed that their knowledge and understanding of the key quantitative data concepts improved significantly throughout the course. This increased understanding helped them discuss quantitative data with community members and study participants, which was important to ensure that research findings reach the affected communities. Peer researchers also agreed that incorporating their new data analysis knowledge with existing lived experience helped them to make findings more relatable and understandable which is critical for translating knowledge to other researchers and policy makers. Overall, our training curriculum gave peer researchers the confidence to talk about quantitative data and improve their capacity to disseminate research. This work also provides guidelines for training peer researchers and ensuring that they are meaningfully engaged in research studies they are a part of. [ABSTRACT FROM AUTHOR]

Background: Adolescence and young adulthood is an important period for substance use initiation and related harms. In the context of the ongoing opioid crisis, the risks for youth (ages 16–29) who use opioids are particularly heightened. Despite recommendations to adopt a developmentally appropriate and comprehensive approach to reduce opioid-related harms among youth, data continue to show that youth are not adequately engaged in opioid treatments and encounter many barriers. The aim of this study is to identify youth-centered opportunities for improving opioid treatment services. Methods: This paper reports multi-site qualitative findings from youth participating in the 'Improving Treatment Together' project, a community-based participatory project being conducted in British Columbia and Alberta, two western Canadian provinces that have been dramatically impacted by the opioid crisis. Qualitative data were collected during three workshops with youth who used opioids and accessed opioid treatment services in the prior 12 months. These workshops were conducted in three communities following the core elements of human-centered co-design. A multi-site qualitative analysis was conducted to identify within- and between-site themes surrounding youths' needs for improving opioid treatment service experiences and outcomes. Results: Three overarching needs themes were identified from across the communities. The first reflected youths' difficulties finding and staying connected to opioid treatment services, with the overarching need theme suggesting opportunities to reduce organizational and systems-related barriers to care, such as waiting times and wider information about service availability. The second area of need was rooted in youths' feelings of judgment when accessing services. Consequently, opportunities to increase respectful and empathic interactions were the overarching need. The final theme was more nuanced across communities and reflected opportunities for an individualized approach to opioid treatment services that consider youths' unique basic safety, social, and health needs. Conclusions: This study identifies fundamental directions for the operationalization and implementation of youth-centered opioid treatment services. These directions are contextualized in youths' lived experiences accessing services in their local communities, with overarching themes from across sites strengthening their transferability to other settings. [ABSTRACT FROM AUTHOR]

Background: Advance care planning (ACP) is a process which enables patients to communicate wishes, values, fears, and preferences for future medical care. Despite patient interest in ACP, the frequency of discussions remains low. Barriers to ACP may be mitigated by involving non-physician clinic staff, preparing patients ahead of visits, and using tools to structure visits. An ACP care pathway incorporating these principles was implemented in longitudinal generalist outpatient care, including primary care/family medicine and general internal medicine, in two Canadian provinces. This study aims to understand clinician experiences implementing the pathway. Methods: The pathway was implemented in one family practice in Alberta, two family practices in British Columbia (BC), and one BC internal medicine outpatient clinic. Physicians and allied health professionals delivered structured pathway visits based on the Serious Illness Conversation Guide. Twelve physicians and one social worker participated in interviews or focus groups at the end of the study period. Qualitative data were coded inductively using an iterative approach, with regular meetings between coders. Results: Clinicians described experiences with the ACP care pathway, impact at the clinician level, and impact at the patient level. Within each domain, clinicians described barriers and facilitators experienced during implementation. Clinicians also reflected candidly about potential for future implementation and the sustainability of the pathway. Conclusions: While the pathway was implemented slightly differently between provinces, core experiences were that implementation of the pathway, and integration with current practice, were feasible. Across settings, similar themes recurred regarding usefulness of the pathway structure and its tools, impact on clinician confidence and interactions with patients, teamwork and task delegation, compatibility with existing workflow, and patient preparation and readiness. Clinicians were supportive of ACP and of the pathway. Trial registration: The study was prospectively registered with clinicaltrials.gov (NCT03508557). Registered April 25, 2018. https://classic.clinicaltrials.gov/ct2/show/NCT03508557. [ABSTRACT FROM AUTHOR]

Background: In patient-oriented research (POR), patients contribute their valuable knowledge and lived-experiences to work together as active research partners at all stages of the health research cycle. However, research looking to understand how patient research partners (PRPs) and researchers work together in meaningful and collaborative ways remains limited. This study aims to evaluate patient engagement with the RePORT Patient Advisory Council (PAC) and to identify barriers and facilitators to meaningful patient engagement encountered within research partnerships involving patient research partners and researchers. Methods: The RePORT PAC members included nine PRPs and nine researchers (clinician-researchers, research staff, patient engagement experts) from both Alberta and British Columbia. All members were contacted and invited to complete an anonymous online survey (Public and Patient Engagement Evaluation (PPEET) tool) at two different project times points. The PAC was invited for a semi-structured interview to gain in-depth understanding of their experiences working together. Interviews were audio-recorded, transcribed, and the data was thematically analyzed with the support of a qualitative analysis software, NVivo. Results: A total of nine PRPs (100%) and three researchers (33%) participated in the baseline survey in February 2022 while six PRPs (67%) responded and three researchers (33%) completed the follow up survey in May 2022. For the semi-structured interviews, nine PRPs (100%) and six researchers (67%) participated. According to the survey results, PAC members agreed that the supports (e. g. training, compensation) needed to contribute to the project were available throughout the project. The survey responses also showed that most members of the PAC felt their opinions and views were heard. Responses to the survey regarding diversity within the PAC were mixed. There were many suggestions for improving diversity and collaboration provided by PAC members during the semi-structured interviews. PAC members mentioned that PAC PRPs informed the co-development of research materials such as recruitment posters and interview guides for the RePORT study. Conclusions: Through fostering a collaborative environment, we can engage a diverse group of people to work together meaningfully in health research. We have identified what works well, and areas for improvement within our research partnership involving PRPs and researchers as well as recommendations for POR projects more broadly, going forward. Plain English summary: Patient research partners contribute their valuable knowledge, lived experiences, and skills in health research projects. However, research looking to understand how patient partners and researchers can work together in a meaningful and collaborative way remains limited. We aim to evaluate patient engagement with the RePORT Patient Advisory Council (PAC) and to identify barriers and facilitators to meaningful patient engagement encountered within research partnerships involving patient research partners and researchers. We used a mixed methods design as it provided the opportunity to gather more insights from the RePORT PAC members' engagement experiences throughout the study and provide a deeper understanding on the barriers and facilitators to working together. We involved diverse patient research partners, clinicians/researchers, patient engagement organization team members and other stakeholders from the RePORT PAC. All PAC members were invited to complete an anonymous online survey as well as a semi-structured interview. Patient research partners appreciated the supports (e.g. training, compensation) provided throughout the project. Most PAC members felt that their views and opinions were heard, which further facilitated a collaborative team environment. There were many suggestions for improving diversity and collaboration provided by PAC members during the semi-structured interviews. Through fostering a collaborative environment, we can engage a diverse group of people to work together meaningfully in health research. We have identified what works well, and areas for improvement in our research partnership and recommendations for patient-oriented research projects more broadly, going forward. [ABSTRACT FROM AUTHOR]

Background: Substance use is common among people who visit emergency departments (EDs) frequently. We aimed to characterize subgroups within this cohort to better understand care needs/gaps, and generalizability of characteristics in three Canadian provinces.Methods: This was a retrospective cohort study (April 1st, 2013 to March 31st, 2016) of ED patients in Ontario, Alberta, and British Columbia (B.C.) We included patients ≥ 18 years with substance use-related healthcare contact during the study period and frequent ED visits, defined as those in the top 10% of ED utilization when all patients were ordered by annual ED visit number. We used linked administrative databases including ED visits and hospitalizations (all provinces); mental heath-related hospitalizations (Ontario and Alberta); and prescriptions, physician services, and mortality (B.C.). We compared to cohorts of people with (1) frequent ED visits and no substance use, and (2) non-frequent ED visits and substance use. We employed cluster analysis to identify subgroups with distinct visit patterns and clinical characteristics during index year, April 1st, 2014 to March 31st, 2015.Results: In 2014/15, we identified 19,604, 7,706, and 9,404 people with frequent ED visits and substance use in Ontario, Alberta, and B.C (median 37-43 years; 60.9-63.0% male), whose ED visits and hospitalizations were higher than comparison groups. In all provinces, cluster analyses identified subgroups with "extreme" and "moderate" frequent visits (median 13-19 versus 4-6 visits/year). "Extreme" versus "moderate" subgroups had more hospitalizations, mental health-related ED visits, general practitioner visits but less continuity with one provider, more commonly left against medical advice, and had higher 365-day mortality in B.C. (9.3% versus 6.6%; versus 10.4% among people with frequent ED visits and no substance use, and 4.3% among people with non-frequent ED visits and substance use). The most common ED diagnosis was acute alcohol intoxication in all subgroups.Conclusions: Subgroups of people with "extreme" (13-19 visits/year) and "moderate" (4-6 visits/year) frequent ED visits and substance use had similar utilization patterns and characteristics in Ontario, Alberta, and B.C., and the "extreme" subgroup had high mortality. Our findings suggest a need for improved evidence-based substance use disorder management, and strengthened continuity with primary and mental healthcare. [ABSTRACT FROM AUTHOR]

Background: Residents of long-term care homes (LTCH) often experience unnecessary and non-beneficial hospitalizations and interventions near the end-of-life. Advance care directives aim to ensure that end-of-life care respects resident needs and wishes.Methods: In this retrospective cohort study, we used multistate models to examine the health trajectories associated with Do-Not-Resuscitate (DNR) and Do-Not-Hospitalize (DNH) directives of residents admitted to LTCH in Ontario, Alberta, and British Columbia, Canada. We adjusted for baseline frailty-related health instability. We considered three possible end states: change in health, hospitalization, or death. For measurements, we used standardized RAI-MDS 2.0 LTCH assessments linked to hospital records from 2010 to 2015.Results: We report on 123,003 LTCH residents. The prevalence of DNR and DNH directives was 71 and 26% respectively. Both directives were associated with increased odds of transitioning to a state of greater health instability and death, and decreased odds of hospitalization. The odds of hospitalization in the presence of a DNH directive were lowered, but not eliminated, with odds of 0.67 (95% confidence interval 0.65-0.69), 0.63 (0.61-0.65), and 0.47 (0.43-0.52) for residents with low, moderate and high health instability, respectively.Conclusion: Even though both DNR and DNH orders are associated with serious health outcomes, DNH directives were not frequently used and often overturned. We suggest that policies recommending DNH directives be re-evaluated, with greater emphasis on advance care planning that better reflects resident values and wishes. [ABSTRACT FROM AUTHOR]

Background: Implementation scientists and practitioners, alike, recognize the importance of sustaining practice change, however post-implementation studies of interventions are rare. This is a protocol for the Sustainment, Sustainability and Spread Study (SSaSSy). The purpose of this study is to contribute to knowledge on the sustainment (sustained use), sustainability (sustained benefits), and spread of evidence-based practice innovations in health care. Specifically, this is a post-implementation study of an evidence-informed, Care Aide-led, facilitation-based quality-improvement intervention called SCOPE (Safer Care for Older Persons (in long-term care) Environments). SCOPE has been implemented in nursing homes in the Canadian Provinces of Manitoba (MB), Alberta (AB) and British Columbia (BC). Our study has three aims: (i) to determine the role that adaptation/contextualization plays in sustainment, sustainability and spread of the SCOPE intervention; (ii) to study the relative effects on sustainment, sustainability and intra-organizational spread of high-intensity and low-intensity post-implementation "boosters", and a "no booster" condition, and (iii) to compare the relative costs and impacts of each booster condition.Methods/design: SSaSSy is a two-phase mixed methods study. The overarching design is convergent, with qualitative and quantitative data collected over a similar timeframe in each of the two phases, analyzed independently, then merged for analysis and interpretation. Phase 1 is a pilot involving up to 7 units in 7 MB nursing homes in which SCOPE was piloted in 2016 to 2017, in preparation for phase 2. Phase 2 will comprise a quasi-experiment with two treatment groups of low- and high-intensity post-implementation "boosters", and an untreated control group (no booster), using pretests and post-tests of the dependent variables relating to sustained care and management practices, and resident outcomes. Phase 2 will involve 31 trial sites in BC (17 units) and AB (14 units) nursing homes, where the SCOPE trial concluded in May 2019.Discussion: This project stands to advance understanding of the factors that influence the sustainment of practice changes introduced through evidence-informed practice change interventions, and their associated sustainability. Findings will inform our understanding of the nature of the relationship of fidelity and adaptation to sustainment and sustainability, and afford insights into factors that influence the intra-organizational spread of practice changes introduced through complex interventions. [ABSTRACT FROM AUTHOR]

Background: We analyzed and compared primary health care (PHC) policies in British Columbia, Alberta and Saskatchewan to understand how they inform the design and implementation of team-based primary health care service delivery. The goal was to develop policy imperatives that can advance team-based PHC in Canada.Methods: We conducted comparative case studies (n = 3). The policy analysis included: Context review: We reviewed relevant information (2007 to 2014) from databases and websites. Policy review and comparative analysis: We compared and contrasted publically available PHC policies. Key informant interviews: Key informants (n = 30) validated narratives prepared from the comparative analysis by offering contextual information on potential policy imperatives. Advisory group and roundtable: An expert advisory group guided this work and a key stakeholder roundtable event guided prioritization of policy imperatives.Results: The concept of team-based PHC varies widely across and within the three provinces. We noted policy gaps related to team configuration, leadership, scope of practice, role clarity and financing of team-based care; few policies speak explicitly to monitoring and evaluation of team-based PHC. We prioritized four policy imperatives: (1) alignment of goals and policies at different system levels; (2) investment of resources for system change; (3) compensation models for all members of the team; and (4) accountability through collaborative practice metrics.Conclusions: Policies supporting team-based PHC have been slow to emerge, lacking a systematic and coordinated approach. Greater alignment with specific consideration of financing, reimbursement, implementation mechanisms and performance monitoring could accelerate systemic transformation by removing some well-known barriers to team-based care. [ABSTRACT FROM AUTHOR]

Background: Effective communication among interdisciplinary healthcare teams is essential for quality healthcare, especially in nursing homes (NHs). Care aides provide most direct care in NHs, yet are rarely included in formal communications about resident care (e.g., change of shift reports, family conferences). Audit and feedback is a potentially effective improvement intervention. This study compares the effect of simple and two higher intensity levels of feedback based on goal-setting theory on improving formal staff communication in NHs.Methods: This pragmatic three-arm parallel cluster-randomized controlled trial included NHs participating in TREC (translating research in elder care) across the Canadian provinces of Alberta and British Columbia. Facilities with at least one care unit with 10 or more care aide responses on the TREC baseline survey were eligible. At baseline, 4641 care aides and 1693 nurses cared for 8766 residents in 67 eligible NHs. NHs were randomly allocated to a simple (control) group (22 homes, 60 care units) or one of two higher intensity feedback intervention groups (based on goal-setting theory): basic assisted feedback (22 homes, 69 care units) and enhanced assisted feedback 2 (23 homes, 72 care units). Our primary outcome was the amount of formal communication about resident care that involved care aides, measured by the Alberta Context Tool and presented as adjusted mean differences [95% confidence interval] between study arms at 12-month follow-up.Results: Baseline and follow-up data were available for 20 homes (57 care units, 751 care aides, 2428 residents) in the control group, 19 homes (61 care units, 836 care aides, 2387 residents) in the basic group, and 14 homes (45 care units, 615 care aides, 1584 residents) in the enhanced group. Compared to simple feedback, care aide involvement in formal communications at follow-up was 0.17 points higher in both the basic ([0.03; 0.32], p = 0.021) and enhanced groups ([0.01; 0.33], p = 0.035). We found no difference in this outcome between the two higher intensity groups.Conclusions: Theoretically informed feedback was superior to simple feedback in improving care aides' involvement in formal communications about resident care. This underlines that prior estimates for efficacy of audit and feedback may be constrained by the type of feedback intervention tested.Trial Registration: ClinicalTrials.gov ( NCT02695836 ), registered on March 1, 2016. [ABSTRACT FROM AUTHOR]