The influence of health service interactions and local policies on vaccination decision-making in immigrant women: A multi-site Canadian qualitative study.

OBJECTIVES: Research on immigrant and refugee vaccination uptake in Canada shows that immunization decisions vary by vaccine type, location, age and migration status. Despite their diversity, these studies often treat immigrant and refugee populations as a single group relative to other Canadians. In this comparative study, we explored how previous risk communication and immunization experiences influence immunization decisions by immigrant and refugee women from three communities across Canada. METHODS: Participants included women from the Punjabi immigrant community located in Surrey and Abbotsford, British Columbia (n = 36), the Nigerian immigrant community located in Winnipeg, Manitoba (n = 43), and the Congolese refugee community in Edmonton, Alberta (n = 18). Using focus groups guided by focused ethnography methodology, we sought to understand immunization experiences in Canada and before arrival, and what information sources influenced the immunization decision-making process by the women in the three communities. RESULTS: Participants had differing past experiences in Canada and before their arrival that influenced how they used information in their vaccination decisions. Clear vaccination communications and dialogue with Canadian health care providers increased trust in Canadian health care and the likelihood of vaccine uptake. By contrast, weak vaccine recommendations and antivaccination information in the community prompted participants to decline future vaccines. CONCLUSION: Given our participants' different communication preferences and needs, we argue that a one-size-fits-all communication approach is inappropriate for immigrant and refugee populations. Instead, multi-pronged communication strategies are required to reach participants and respond to previous experiences and information that may lead to vaccination hesitancy.

Partnership-building considerations for implementation science in learning health systems: a case study of the Implementation Science Collaborative in Alberta, Canada.

Introduction: Implementation of health innovations is inherently collaborative, requiring trans-sectoral partnerships between implementation researchers, innovation teams, and implementation practitioners. Implementation science has been shown to improve implementation successes; however, challenges that hinder partnerships to advance implementation science continue to persist. Using a whole-system approach to assess and respond to implementation science partnership barriers may shed light on effective responses. Methods: We conducted a case study of Alberta's learning health system, using semi-structured group and individual interviews to create a nuanced understanding of the considerations required for implementation research collaborations. We interviewed 53 participants representing 21 offices in the health system, academia, professional associations, and government who regularly plan, evaluate, and/or study health system implementation initiatives in Alberta. Using the Partnership Model for Research Capacity Building, we identified current facilitators and challenges for partnerships for conducting and using implementation science, at different levels of Alberta's health-research ecosystem. Results: Alberta's healthcare system is well set up to readily embed intervention effectiveness and efficacy research. Infrastructure was also in place to strengthen implementation practice. However, weaknesses around exchanging knowledge and skills, providing feedback and mentoring, and accommodating diversity affected the ability of both individuals and teams to build implementation science capacity. Without this capacity, teams could not participate in embedded implementation research collaborations. We report the response of the Alberta Strategy for Patient-Oriented Research SUPPORT Unit to these barriers to provide practical guidance on various program options to strengthen individual- and organization-level implementation science capacity. Discussion: This study applied a whole-system approach to assess factors across Alberta's health-research ecosystem, which affect partnerships to advance implementation science. Our findings illustrated that partnership considerations go beyond interpersonal factors and include system-wide considerations. With the results, health organization leaders have (1) a method for assessing organizational capability to readily embed implementation research and (2) a catalog of potential responses to create conditions to readily engage with implementation science in their day-to-day implementation processes.

A framework to guide storytelling as a knowledge translation intervention for health-promoting behaviour change.

BACKGROUND: Stories can be a powerful tool to increase uptake of health information, a key goal of knowledge translation (KT). Systematic reviews demonstrate that storytelling (i.e. sharing stories) can be effective in changing health-promoting behaviours. Though an attractive KT strategy, storytelling is a complex approach requiring careful planning and consideration of multiple factors. We sought to develop a framework to assist KT researchers and practitioners in health contexts to consider and develop effective KT interventions that include stories or storytelling. METHODS: We conducted a broad search of the literature to identify studies that used storytelling as a KT intervention across different disciplines: health research, education, policy development, anthropology, organizational development, technology research, and media. We extracted purposes, theories, models, mechanisms, and outcomes and then mapped the theoretical and practical considerations from the literature onto the Medical Research Council guidance for complex interventions. The theoretical and practical considerations uncovered comprised the basis of the storytelling framework development. Through discussion and consensus, methodological experts refined and revised the framework for completeness, accuracy, nuance, and usability. RESULTS: We used a complex intervention lens paired with existing behaviour change techniques to guide appropriate theory-based intervention planning and practical choices. An intentional approach to the development of story-based KT interventions should involve three phases. The theory phase specifies the goal of the intervention, mechanisms of action, and behaviour change techniques that will achieve the intended effects. The modelling phase involves development and testing using an iterative approach, multiple methods and engagement of end-users. Finally, formal evaluation using multiple methods helps determine whether the intervention is having its intended effects and value added. CONCLUSIONS: This framework provides practical guidance for designing story-based KT interventions. The framework was designed to make explicit the requisite considerations when determining the appropriateness and/or feasibility of storytelling KT, clarify intervention goals and audience, and subsequently, support the development and testing of storytelling interventions. The framework presents considerations as opposed to being prescriptive. The framework also offers an opportunity to further develop theory and the KT community's understanding of effectiveness and mechanisms of action in storytelling interventions.

An Implementation Science Laboratory as One Approach to Whole System Improvement: A Canadian Healthcare Perspective.

Implementation science (IS) has emerged as an integral component for evidence-based whole system improvement. IS studies the best methods to promote the systematic uptake of evidence-based interventions into routine practice to improve the quality and effectiveness of health service delivery and patient care. IS laboratories (IS labs) are one mechanism to integrate implementation science as an evidence-based approach to whole system improvement and to support a learning health system. This paper aims to examine if IS labs are a suitable approach to whole system improvement. We retrospectively analyzed an existing IS lab (Alberta, Canada's Implementation Science Collaborative) to assess the potential of IS labs to perform as a whole system approach to improvement and to identify key activities and considerations for designing IS labs specifically to support learning health systems. Results from our evaluation show the extent to which IS labs support learning health systems through enabling infrastructures for system-wide improvement and research.

Application of protection motivation theory to clinical trial enrolment for pediatric chronic conditions.

BACKGROUND: Parents of children living with chronic but manageable conditions hope for improved therapies or cures, including Advanced Therapy Medicinal Products (ATMPs). Multiple pediatric clinical trials for ATMPs are underway, but the risk profile of ATMPs for chronic conditions is largely unknown and likely different than for terminal pediatric illnesses. Applying Protection Motivation Theory modified to the context of pediatric ATMP clinical trial enrollment, our study analyses information needs of parents of children living with chronic manageable conditions: Type 1 Diabetes (T1D) or Inherited Retinal Diseases (IRD). METHODS: We conducted semi-structured interviews with 15 parents of children living with T1D and 14 parents of children living with an IRD about: a) family background and the diagnostic experience; b) awareness of gene and stem cell therapy research and clinical trials for T1D and IRD; c) information sources on trials and responses to that information; d) attitudes to trial participation, including internationally; e) understanding of trial purpose and process; and f) any experiences with trial participation. We then discussed a pediatric ATMP clinical trial information sheet, which we developed with experts. We applied directed qualitative content analysis, based on PMT, to examine the information preferences of parents in deciding whether to enrol their children in stem cell or gene therapy clinical trials. RESULTS: Parents balanced trial risks against their child's ability to cope with the chronic condition. The better the child's ability to cope with vision impairment or insulin management, the less likely parents were to assume trial risks. Conversely, if the child struggled with his/her vision loss, parents were more likely to be interested in trial participation, but only if the risks were low and likelihood for potential benefit was high. CONCLUSIONS: Fear of adverse events as part of threat appraisal was the predominant consideration for parents in considering whether to enroll their child living with a manageable, chronic condition in a pediatric clinical trial of an ATMP. This consideration outweighed potential benefits and severity of their child's condition. Parents called for available safety data and fulsome communication processes that would enable them to make informed decisions about clinical trial enrolment on behalf of their children.

Participant perspectives on a phase I/II ocular gene therapy trial (NCT02077361).

Background: To learn from the experiences of potential clinical trial participants, participants in a Phase 1 ocular gene therapy trial, and their partners to improve communications and trial conduct. Materials and methods: Primary and secondary qualitative analysis of semi-structured interviews of potential participants (n = 20), clinical trial participants (n = 2) and their partners (n = 2) in a gene therapy clinical trial for choroideremia (NCT02077361). Analysis included: 1) thematic analysis of transcribed entrance and exit semi-structured interviews with trial participants and their partners; and 2) secondary qualitative analysis of interviews with potential trial participants, conducted prior to the initiation of the clinical trial. Results: Participants and partners who had received information during the consent process had a better understanding of the risks and benefits of participation in a Phase 1 gene therapy clinical trial than potential trial participants. However, participants and partners reported deficiencies in communication throughout the trial. Results highlight additional opportunities for trial staff to reinforce initial information about the trial, communicate logistical information and individual outcome data, and express appreciation for participation. Conclusions: Our study enabled clinical trial participants to describe their experiences in a clinical trial for a novel gene therapy. We provide practical recommendations to future clinical trial staff on communications and conduct participant perspectives. Communications strategies should address changing information needs over the course of the trial, express appreciation for participation and enable feedback from participants and their supporting family members, friends, or caregivers.