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Vaccination in pregnancy (VIP) protects pregnant individuals and their newborns; yet, uptake remains suboptimal. Pregnant individuals face unique decision-making challenges, and communication with their health care provider (HCP) is crucial for uptake. While there is extensive data on barriers to VIP, interventions applying evidence-based behavior change strategies and co-designed with end users are scarce. Our prior work indicated that a new Canadian intervention was needed. This study aimed to co-design a multicomponent intervention to support informed decision-making and vaccine communication in pregnancy. Our multimethod study followed the Double Diamond phases (ie, Discover, Define, Develop, and Deliver) and partnered with a diverse patient advisory council and a multidisciplinary team of HCPs. During the Discover and Define phases, our previous work, we explored gaps and barriers to VIP in Canada and defined the behavior change strategies to address those needs. During the Develop phase, we co-designed and conducted iterative prototyping of four intervention components: (1) a pregnancy-specific communication approach, (2) a skills course for HCPs, (3) a practice change plan, and (4) a website with evidence-based resources for patients and HCPs. We used online and in-person participatory co-design sessions and peer-to-peer, patient-oriented online focus groups and semistructured in-depth interviews. During the Deliver phase, we refined the intervention components through functionality and usability testing. The Vaccines in Pregnancy Canada (VIP Canada) intervention consists of four integrated components: (1) DECIDE (Determine, Elicit, Consent, Interactive discussion, Deliver, and Empower): a patient-centered, pregnancy-specific communication approach for providers to deliver a clear vaccine recommendation while respecting autonomy. (2) Skills course for HCPs: 4 self-paced, online modules to learn the rationale for VIP and the DECIDE communication approach and 2 group sessions. Providers found the skills course clear, practical, and applicable across diverse clinical roles and settings. Feedback led to enhancements, including improved audio-visual synchronization, consistent closed captioning, and the addition of downloadable reference materials to support learning. (3) Practice change plan: an action plan HCPs make to integrate vaccine communication into their practice. (4) VIP Canada website: an evidence-based website with resources to support informed vaccine decision-making for patients and providers. Patient feedback informed iterative refinements to the layout and content of the website to enhance navigation, readability, and representation of diverse identities. Functionality and usability testing demonstrated that patients found the VIP Canada website visually appealing, easy to navigate, and supportive of informed decision-making. The VIP Canada is a promising intervention co-designed to drive behavior change by addressing key barriers to vaccine communication and informed decision-making around our patient partners' and HCPs' perspectives and lived experiences to bridge theoretical frameworks with real-world relevance. Next steps include a feasibility study for further refinement and a subsequent effectiveness study.

ObjectiveTo gain an insight into coping strategies that people living with chronic pain use to self-manage their pain.DesignThis qualitative Patient-oriented Research study used the Patient and Community Engagement Research approach. It was conducted by people with chronic pain lived experience, ensuring that patient perspective and needs were considered and addressed throughout the research cycle. Purposeful sampling was used for recruiting individuals living with chronic pain. A focus group and one-on-one semi-structured interviews were conducted via videoconference. The data were analysed iteratively using inductive thematic analysis and narrative story analysis.SettingCalgary, Alberta, Canada.ParticipantsEleven adult participants, between the ages of 18 and 65, who self-identified as living with chronic pain for greater than 2 years.ResultsThree main themes emerged from the data: (1) the elements of chronic pain, (2) the chronic pain journey to acceptance and (3) daily coping strategies for chronic pain. Participants thought it was important to discuss these three themes because the daily coping strategies that they employed at any given time (theme 3) depended on the factors discussed in themes 1 and 2. Overlaying all of this is also a grieving process that people living with chronic pain may have to go through more than once. Participants also identified recommendations for healthcare professionals to support people living with chronic pain.ConclusionsDealing with chronic pain affects all aspects of a person’s life and involves a grieving process. When treating patients with chronic pain, it is important for healthcare professionals to understand the journey that people living with chronic pain go through, not just coping strategies. Diagnosis is critical for a patient’s acceptance and in helping them find their new normal where they can employ daily coping strategies to manage their pain.

Introduction Young adults with chronic autoimmune conditions face unique and often overlooked challenges in post‐secondary education due to the invisible and unpredictable nature of these conditions. This patient‐led qualitative study aims to further understand the experiences of young adults living with chronic autoimmune conditions while attending or considering attending post‐secondary education. Methods The study followed the three‐phase Patient and Community Engagement Research (PaCER) approach, a participatory framework that trains individuals with lived experience to lead all stages of research. In the first stage (SET), the protocol was co‐designed with three external patient‐partners. Study participants included young adults (18–35 years) with a chronic autoimmune condition for > 1 year who considered attending or attended a Canadian post‐secondary school within the last 5 years and were recruited through social media. Data were collected (COLLECT) via focus group and interviews and then analysed using thematic and narrative analysis. Findings were shared back with study participants (REFLECT) for refinement and to inform recommendations. Results Ten young adults participated, and eight key themes were identified. Themes included the wide‐ranging impacts of disease management, the value of peer and family support, protective and risk factors for success, limited awareness and education around chronic conditions, and sometimes‐unconscious burden of navigating invisible conditions. Participants also reflected on their resilience and the shifting accessibility landscape during Covid‐19, and offered detailed feedback on current gaps and needed support. Their recommendations underscored ongoing institutional shortcomings and the need for systemic change. Conclusion Our findings indicate that young adults living with chronic autoimmune conditions are not having their needs sufficiently met while navigating the post‐secondary education system. It is imperative that changes and feedback provided by students with lived experience are implemented to ensure an accessible post‐secondary education experience. Patient or Public Contribution Seven PaCER researchers, who identify as young adults with lived experience of chronic conditions, led the study design, data collection, analysis and manuscript preparation. This study was also co‐designed with three external patient‐partners who also identify as young adults with chronic conditions.

ObjectiveVaccination in pregnancy (VIP) is a protective measure for pregnant individuals and their babies. Healthcare provider’s (HCP) recommendations are important in promoting VIP. However, a lack of strong recommendations and accessible resources to facilitate communication impact uptake. This study sought to determine the extent of and characterise the resources available for parent-provider vaccine communication in pregnancy in Canada using a behavioural theory-informed approach.DesignScoping review.MethodsIn accordance with the JBI methodology, nine disciplinary and interdisciplinary databases were searched, and a systematic grey literature search was conducted in March and January 2022, respectively. Eligible studies included resources available to HCPs practising in Canada when discussing VIP, and resources tailored to pregnant individuals. Two reviewers piloted a representative sample of published and grey literature using inclusion-exclusion criteria and the Authority, Accuracy, Coverage, Objectivity, Date, Significance guidelines (for grey literature only). Sixty-five published articles and 1079 grey reports were screened for eligibility, of which 19 articles and 166 reports were included, respectively.ResultsFrom the 19 published literature articles and 166 grey literature reports, 95% were driven by the ‘Knowledge’ domain of the Theoretical Domains Framework, while n=34 (18%) addressed the ‘Skills’ domain. Other gaps included a lack of VIP-specific tools to address hesitancy and a lack of information on culturally safe counselling practices.ConclusionThe study suggests a need for resources in Canada to improve VIP communication skills and improve access to vaccination information for HCPs and pregnant individuals. The absence of such resources may hinder VIP uptake.

Background There are increasing publications on meaningful collaboration between researchers and patient research partners (PRPs), but fewer publications of such work from the PRP perspective using an evaluation framework. Our aim is to present our own perspectives and reflections on meaningful collaboration as PRPs working on a qualitative research study. Main body We were part of a study team that comprised of PRPs, clinicians and academic researchers, and was led by a PRP. The team designed and conducted a qualitative study aimed at understanding how patients make decisions around tapering of biologics for inflammatory bowel disease. The study was conducted online. The PRP lead was trained in qualitative methodology through a one-year certificate program called Patient and Community Engagement Research offered through the University of Calgary Continuing Education. We had received patient-oriented research training and qualitative research training prior to this project. Team members were assigned tasks by our group lead based on member interests and willingness. Some group members were part of the Strategy for Patient-Oriented Research, Inflammation, Microbiome, and Alimentation: Gastro-Intestinal and Neuropsychiatric Effects Network, one of five chronic disease networks in the Strategy for Patient Oriented Research initiative of the Canadian Institutes of Health Research. We describe the five key ingredients to successful collaboration based on our experiences and reflections utilizing the Experience-Reflection-Action Cycle as our framework. The five key ingredients that we identified were: inclusiveness, goal and role clarity, multi-level training and capacity building, shared decision making, and a supportive team lead. Conclusion Overall, our experience was positive. With successful collaboration came an increased level of trust, commitment and performance. There is a need for more studies with diverse PRPs in different settings to validate and/or identify additional factors to improve collaboration in patient-oriented research. Plain English Summary There are an increasing number of publications on collaborative research work between researchers and patient research partners but fewer publications of such work from the patient research partner perspective. We share our experiences, reflections and the key factors for successful collaboration as two patient research partners on a research team led by a patient research partner trained in qualitative methodology through a one-year certificate program called Patient and Community Engagement Research offered through the University of Calgary Continuing Education. We had a positive overall experience and contributed as equal partners on the project, influencing many of the project decisions. Inclusiveness, goal and role clarity, multi-level training and capacity building, shared decision making, and a supportive team lead contributed to the feeling of empowerment and satisfaction. Our results indicate that with successful collaboration comes an increased level of trust, commitment and performance. There is a need for more studies with diverse patient research partners in different settings to validate and/or identify additional factors to improve collaboration in patient-oriented research.

ObjectiveTo understand parental perspectives regarding universal newborn screening (UNS) for congenital cytomegalovirus (cCMV) in Canada.DesignA qualitative, patient-led study using the Patient and Community Engagement Research approach consisting of online focus groups and in-depth individual interviews to understand parental preferences regarding UNS for cCMV. Data were analysed iteratively using inductive thematic analysis and narrative story analysis.SettingCanada-wide study conducted via video conference from October to December 2023.Patients12 participants from five Canadian provinces who self-identified as 18 years of age or older and as having parental lived experience with cytomegalovirus (CMV) or cCMV participated in the study.ResultsWe identified three themes: (1) attitudes about UNS for cCMV, including participants’ unanimous support for UNS and confirmation that parental anxiety is not a deterrent for screening, (2) cCMV diagnosis, including the importance of coupling cCMV diagnosis with access to treatment and medical support and (3) awareness of cCMV, where participants shared their frustration about the lack of public and pregnant people’s awareness of cCMV.ConclusionsParental anxiety is not a deterrent for UNS for cCMV. Children with cCMV and their families deserve every opportunity to attain their best possible outcomes. UNS offers children with cCMV access to early intervention if they need it, and also helps to raise awareness and education to prevent future CMV infections.

Background Children’s exposure to toxic stress (e.g., parental depression, violence, poverty) predicts developmental and physical health problems resulting in health care system burden. Supporting parents to develop parenting skills can buffer the effects of toxic stress, leading to healthier outcomes for those children. Parenting interventions that focus on promoting parental reflective function (RF), i.e., parents’ capacity for insight into their child’s and their own thoughts, feelings, and mental states, may understand help reduce societal health inequities stemming from childhood stress exposures. The Attachment and Child Health (ATTACH TM ) program has been implemented and tested in seven rapid-cycling pilot studies ( n  = 64) and found to significantly improve parents’ RF in the domains of attachment, parenting quality, immune function, and children’s cognitive and motor development. The purpose of the study is to conduct an effectiveness-implementation hybrid (EIH) Type II study of ATTACH TM to assess its impacts in naturalistic, real-world settings delivered by community agencies rather than researchers under more controlled conditions. Methods The study is comprised of a quantitative pre/post-test quasi-experimental evaluation of the ATTACH TM program, and a qualitative examination of implementation feasibility using thematic analysis via Normalization Process Theory (NPT). We will work with 100 families and their children (birth to 36-months-old). Study outcomes include: the Parent Child Interaction Teaching Scale to assess parent-child interaction; the Parental Reflective Function and Reflective Function Questionnaires to assess RF; and the Ages and Stages Questionnaire – 3rd edition to examine child development, all administered pre-, post-, and 3-month-delayed post-assessment. Blood samples will be collected pre- and post- assessment to assess immune biomarkers. Further, we will conduct one-on-one interviews with study participants, health and social service providers, and administrators (total n  = 60) from each collaborating agency, using NPT to explore perceptions and experiences of intervention uptake, the fidelity assessment tool and e-learning training as well as the benefits, barriers, and challenges to ATTACH TM implementation. Discussion The proposed study will assess effectiveness and implementation to help understand the delivery of ATTACH TM in community agencies. Trial registration Name of registry: https://clinicaltrials.gov/. Registration number: NCT04853888 . Date of registration: April 22, 2021.

Pain education and self-management programs offer patients valuable knowledge and skills to enhance their self-management and improve outcomes. Nonetheless, the uptake and completion rates of such programs remain low, potentially due to the misalignment between the programs’ content and delivery and the patients’ needs. We aim to aggress this gap.

Vaccination in pregnancy (VIP) protects pregnant individuals and their newborns, yet vaccine uptake remains suboptimal. Pregnant individuals face unique decision-making challenges, and communication with their healthcare provider is crucial for uptake. Whilst there is extensive data on barriers to VIP, interventions that apply evidence-based behaviour change strategies and that are co-designed with end-users are scarce. Our prior work led us to conclude that a new Canadian intervention was needed.BACKGROUNDVaccination in pregnancy (VIP) protects pregnant individuals and their newborns, yet vaccine uptake remains suboptimal. Pregnant individuals face unique decision-making challenges, and communication with their healthcare provider is crucial for uptake. Whilst there is extensive data on barriers to VIP, interventions that apply evidence-based behaviour change strategies and that are co-designed with end-users are scarce. Our prior work led us to conclude that a new Canadian intervention was needed.Co-design a multicomponent intervention to support informed decision-making and vaccine communication in pregnancy.OBJECTIVECo-design a multicomponent intervention to support informed decision-making and vaccine communication in pregnancy.Our multi-method study followed the Double Diamond phases: Discover, Define, Develop, and Deliver, and partnered with a diverse patient advisory council and a multidisciplinary team of healthcare providers. During the Discover and Define phases, our previous work, we explored gaps and barriers to VIP in Canada, and defined the behaviour change strategies to address those needs. During the Develop phase, we co-designed and conducted iterative prototyping of four intervention components: (1) a pregnancy-specific communication approach, (2) a skills course for healthcare providers, (3) a practice change plan, and (4) a website with evidence-based resources for patients and healthcare providers. We used online and in-person participatory co-design sessions and peer-to-peer, patient-oriented online focus groups and semi-structured in-depth interviews. During the Deliver phase, we refined the intervention components through functionality and usability testing.METHODSOur multi-method study followed the Double Diamond phases: Discover, Define, Develop, and Deliver, and partnered with a diverse patient advisory council and a multidisciplinary team of healthcare providers. During the Discover and Define phases, our previous work, we explored gaps and barriers to VIP in Canada, and defined the behaviour change strategies to address those needs. During the Develop phase, we co-designed and conducted iterative prototyping of four intervention components: (1) a pregnancy-specific communication approach, (2) a skills course for healthcare providers, (3) a practice change plan, and (4) a website with evidence-based resources for patients and healthcare providers. We used online and in-person participatory co-design sessions and peer-to-peer, patient-oriented online focus groups and semi-structured in-depth interviews. During the Deliver phase, we refined the intervention components through functionality and usability testing.The Vaccines in Pregnancy Canada (VIP Canada) intervention consists of 4 integrated components: 1. DECIDE Communication Approach: A patient-centered, pregnancy-specific communication approach for providers to deliver a clear vaccine recommendation while respecting autonomy; 2. Skills Course for Healthcare Providers: Four self-paced, online modules to learn the rationale for VIP and the DECIDE communication approach and two group sessions. Providers found the skills course clear, practical, and applicable across diverse clinical roles and settings. Feedback led to enhancements including improved audio-visual synchronization, consistent closed captioning, and the addition of downloadable reference materials to support learning; 3. Practice Change Plan: An action plan healthcare providers make to integrate vaccine The Vaccines in Pregnancy Canada (VIP Canada) intervention consists of 4 integrated components: 1. DECIDE Communication Approach: A patient-centered, pregnancy-specific communication approach for providers to deliver a clear vaccine recommendation while respecting autonomy; 2. Skills Course for Healthcare Providers: Four self-paced, online modules to learn the rationale for VIP and the DECIDE communication approach and two group sessions. Providers found the skills course clear, practical, and applicable across diverse clinical roles and settings. Feedback led to enhancements including improved audio-visual synchronization, consistent closed captioning, and the addition of downloadable reference materials to support learning; 3. Practice Change Plan: An action plan healthcare providers make to integrate vaccine communication into their practice; 4. VIP Canada Website: An evidence-based website with resources to support informed vaccine decision-making for patients and providers. Patient feedback informed iterative refinements to layout and content of the website to enhance navigation, readability and representation of diverse identities. Functionality and usability testing demonstrated that patients found the VIP Canada website visually appealing, easy to navigate, and supportive of informed decision-making.communication into their practice; 4. VIP Canada Website: An evidence-based website with resources to support informed vaccine decision-making for patients and providers. Patient feedback informed iterative refinements to layout and content of the website to enhance navigation, readability and representation of diverse identities. Functionality and usability testing demonstrated that patients found the VIP Canada website visually appealing, easy to navigate, and supportive of informed decision-making.RESULTSThe Vaccines in Pregnancy Canada (VIP Canada) intervention consists of 4 integrated components: 1. DECIDE Communication Approach: A patient-centered, pregnancy-specific communication approach for providers to deliver a clear vaccine recommendation while respecting autonomy; 2. Skills Course for Healthcare Providers: Four self-paced, online modules to learn the rationale for VIP and the DECIDE communication approach and two group sessions. Providers found the skills course clear, practical, and applicable across diverse clinical roles and settings. Feedback led to enhancements including improved audio-visual synchronization, consistent closed captioning, and the addition of downloadable reference materials to support learning; 3. Practice Change Plan: An action plan healthcare providers make to integrate vaccine The Vaccines in Pregnancy Canada (VIP Canada) intervention consists of 4 integrated components: 1. DECIDE Communication Approach: A patient-centered, pregnancy-specific communication approach for providers to deliver a clear vaccine recommendation while respecting autonomy; 2. Skills Course for Healthcare Providers: Four self-paced, online modules to learn the rationale for VIP and the DECIDE communication approach and two group sessions. Providers found the skills course clear, practical, and applicable across diverse clinical roles and settings. Feedback led to enhancements including improved audio-visual synchronization, consistent closed captioning, and the addition of downloadable reference materials to support learning; 3. Practice Change Plan: An action plan healthcare providers make to integrate vaccine communication into their practice; 4. VIP Canada Website: An evidence-based website with resources to support informed vaccine decision-making for patients and providers. Patient feedback informed iterative refinements to layout and content of the website to enhance navigation, readability and representation of diverse identities. Functionality and usability testing demonstrated that patients found the VIP Canada website visually appealing, easy to navigate, and supportive of informed decision-making.communication into their practice; 4. VIP Canada Website: An evidence-based website with resources to support informed vaccine decision-making for patients and providers. Patient feedback informed iterative refinements to layout and content of the website to enhance navigation, readability and representation of diverse identities. Functionality and usability testing demonstrated that patients found the VIP Canada website visually appealing, easy to navigate, and supportive of informed decision-making.The VIP Canada is a promising intervention co-designed to drive behaviour change by addressing key barriers to vaccine communication and informed decision-making around our patient partners' and healthcare providers' perspectives and lived experiences to bridge theoretical frameworks with real-world relevance. Next steps include a feasibility study for further refinement and a subsequent effectiveness study.CONCLUSIONSThe VIP Canada is a promising intervention co-designed to drive behaviour change by addressing key barriers to vaccine communication and informed decision-making around our patient partners' and healthcare providers' perspectives and lived experiences to bridge theoretical frameworks with real-world relevance. Next steps include a feasibility study for further refinement and a subsequent effectiveness study.