An assessment of adaptation and fidelity in the implementation of an audit and feedback-based intervention to improve transition to adult type 1 diabetes care in Ontario, Canada.

BACKGROUND: The fit between an intervention and its local context may affect its implementation and effectiveness. Researchers have stated that both fidelity (the degree to which an intervention is delivered, enacted, and received as intended) and adaptation to the local context are necessary for high-quality implementation. This study describes the implementation of an audit and feedback (AF)-based intervention to improve transition to type 1 diabetes adult care, at five sites, in terms of adaptation and fidelity. METHODS: An audit and feedback (AF)-based intervention for healthcare teams to improve transition to adult care for patients with type 1 diabetes was studied at five pediatric sites. The Framework for Reporting Adaptations and Modifications to Evidence-based Implementation Strategies (FRAME-IS) was used to document the adaptations made during the study. Fidelity was determined on three different levels: delivery, enactment, and receipt. RESULTS: Fidelity of delivery, receipt, and enactment were preserved during the implementation of the intervention. Of the five sites, three changed their chosen quality improvement initiative, however, within the parameters of the study protocol; therefore, fidelity was preserved while still enabling participants to adapt accordingly. CONCLUSIONS: We describe implementing a multi-center AF-based intervention across five sites in Ontario to improve the transition from pediatric to adult diabetes care for youth with type 1 diabetes. This intervention adopted a balanced approach considering both adaptation and fidelity to foster a community of practice to facilitate implementing quality improvement initiatives for improving transition to adult diabetes care. This approach may be adapted for improving transition care for youth with other chronic conditions and to other complex AF-based interventions. TRIAL REGISTRATION: ClinicalTrials.gov NCT03781973. Registered 13 December 2018. Date of enrolment of the first participant to the trial: June 1, 2019.

Factors associated with COVID-19 vaccination in young children.

OBJECTIVE: To examine factors associated with COVID-19 vaccination (time to vaccination and vaccination status) among healthy young children participating in primary healthcare. METHODS: A cohort study was conducted between November 2021 and September 2022 through the TARGet Kids! primary care research network in Toronto, Canada. Sociodemographic information, child and parent health characteristics, parental vaccine beliefs and child COVID-19 vaccine uptake were collected through parent-reported questionnaires. The primary outcome was time to child COVID-19 vaccination, measured as the time between vaccine availability date and parent-reported child COVID-19 vaccination date. Interval-censored proportional hazard models were used. RESULTS: A total of 267 children age 0 to 13 years were included. The mean child age was 7.6 years, 52.8% (n = 141) were male, 66.5% (n = 141) had mothers of European ethnicity (with missingness), and 68.2% (n = 182) of the children were vaccinated. All parents of vaccinated children had received the COVID-19 vaccination themselves. The rate of vaccination for children was 2% higher with each one-month increase in child age (adjusted HR = 1.02, 95%CI = 1.01-1.03, p < 0.001). Compared to children whose parents had uncertain beliefs, those whose parents had positive beliefs about the importance and safety of COVID-19 vaccination for their children had higher rates of vaccination (adjusted HR = 8.29, 95%CI = 4.25-16.17, p < 0.001; adjusted HR = 5.09, 95%CI = 3.17-8.17, p < 0.001). CONCLUSION: Older child age, parental COVID-19 vaccination, and positive parental beliefs about COVID-19 vaccination were statistically significantly associated with COVID-19 vaccination among healthy young children. Our findings may help to inform policies, practices, and research which aim to strengthen parental vaccine confidence and promote child COVID-19 vaccination.

RéSUMé: OBJECTIF: Examiner les facteurs associés à la vaccination contre la COVID-19 (délai de vaccination et statut vaccinal) chez de jeunes enfants en bonne santé recevant des soins de santé primaires. MéTHODE: Une étude de cohorte a été menée entre novembre 2021 et septembre 2022 par le réseau de recherche en soins primaires TARGet Kids! à Toronto, au Canada. Des données sur le profil sociodémographique, les caractéristiques de santé des enfants et des parents, les convictions parentales à l'égard de la vaccination et la vaccination des enfants contre la COVID-19 ont été recueillies au moyen de questionnaires remplis par les parents. Le résultat principal était le délai de vaccination des enfants contre la COVID-19, mesuré comme étant le temps écoulé entre la date de disponibilité d'un vaccin et la date de vaccination de l'enfant contre la COVID-19 déclarée par le parent. Des modèles de risques proportionnels censurés par intervalle ont été utilisés. RéSULTATS: En tout, 267 enfants de 0 à 13 ans ont été inclus. Ils avaient 7,6 ans en moyenne, 52,8% (n = 141) étaient des garçons, 66,5% (n = 141) avaient une mère d'origine ethnique européenne (avec des données manquantes), et 68,2% (n = 182) étaient vaccinés. Tous les parents des enfants vaccinés étaient eux-mêmes vaccinés contre la COVID-19. Le taux de vaccination des enfants augmentait de 2 % pour chaque mois d'augmentation de l'âge des enfants (rapport de risques instantanés [RRI] ajusté = 1,02, intervalle de confiance [IC] de 95% = 1,01­1,03, p < 0,001). Comparativement aux enfants dont les parents étaient incertains dans leurs convictions, ceux dont les parents croyaient en l'importance et en l'innocuité de la vaccination contre la COVID-19 pour leurs enfants avaient des taux de vaccination plus élevés (RRI ajusté = 8,29, IC de 95% = 4,25­16,17, p < 0,001; RRI ajusté = 5,09, IC de 95% = 3,17­8,17, p < 0,001). CONCLUSION: L'âge plus avancé des enfants, la vaccination parentale contre la COVID-19 et les convictions parentales positives à l'égard de la vaccination contre la COVID-19 présentaient une corrélation significative avec la vaccination contre la COVID-19 chez les jeunes enfants en bonne santé. Nos constats pourraient contribuer à éclairer les politiques, les pratiques et la recherche visant à renforcer la confiance parentale en la vaccination et à promouvoir la vaccination des enfants contre la COVID-19.

Considerations for the design of overdose education and naloxone distribution interventions: results of a multi-stakeholder workshop.

INTRODUCTION: Opioid overdose epidemic is a public health crisis that is impacting communities around the world. Overdose education and naloxone distribution programs equip and train lay people to respond in the event of an overdose. We aimed to understand factors to consider for the design of naloxone distribution programs in point-of-care settings from the point of view of community stakeholders. METHODS: We hosted a multi-stakeholder co-design workshop to elicit suggestions for a naloxone distribution program. We recruited people with lived experience of opioid overdose, community representatives, and other stakeholders from family practice, emergency medicine, addictions medicine, and public health to participate in a full-day facilitated co-design discussion wherein large and small group discussions were audio-recorded, transcribed and analysed using thematic approaches. RESULTS: A total of twenty-four participants participated in the multi-stakeholder workshop from five stakeholder groups including geographic and setting diversity. Collaborative dialogue and shared storytelling revealed seven considerations for the design of naloxone distribution programs specific to training needs and the provision of naloxone, these are: recognizing overdose, how much naloxone, impact of stigma, legal risk of responding, position as conventional first aid, friends and family as responders, support to call 911. CONCLUSION: To create an naloxone distribution program in emergency departments, family practice and substance use treatment services, stigma is a central design consideration for training and naloxone kits. Design choices that reference the iconography, type, and form of materials associated with first aid have the potential to satisfy the need to de-stigmatize overdose response.

Engaging pregnant individuals and healthcare professionals in an international mixed methods study to develop a core outcome set for studies on placenta accreta spectrum disorder (COPAS): a study protocol.

INTRODUCTION: Placenta accreta spectrum (PAS) disorder is a life-threatening condition that may result in serious maternal complications, including mortality. The placenta which is pathologically adherent to the uterine wall, places individuals at high risk of major haemorrhage during the third stage of labour. Current research reports on PAS disorder outcomes have highly variable levels of information, which is therefore difficult for investigators to aggregate to inform practice. There is an urgent need to harmonise data collection in prospective studies to identify and implement best practices for management. One approach to standardise outcomes across any health area via the use of core outcome sets (COSs), which are consensus-derived standardised sets of outcomes that all studies for a particular condition should measure and report. This protocol outlines the steps for developing a COS for PAS disorder (COPAS). METHODS AND ANALYSIS: This protocol outlines steps for the creation of COPAS. The first step, a systematic review, will identify all reported outcomes in the scientific literature. The second step will use qualitative one-on-one interviews to identify additional outcomes identified as important by patients and healthcare professionals that are not reported in the published literature. Outcomes from the first two steps will be combined to form an outcome inventory. This outcome inventory will inform the third step which is a Delphi survey that encourages agreement between patients and healthcare professionals on which outcomes are most important for inclusion in the COS. The fourth step, a consensus group meeting of representative participants, will finalise outcomes for inclusion in the PAS disorder COS. ETHICS AND DISSEMINATION: This study has obtained Research Ethics Board approval from Sunnybrook Health Sciences Centre (#2338, #1488). We will aim to publish the study findings in an international peer-reviewed OBGYN journal. REGISTRATION DETAILS: COMET Core Outcome Set Registration: https://www.comet-initiative.org/Studies/Details/1127. PROSPERO REGISTRATION NUMBER: CRD42020173426.

The cost of anticipating stigma: a longitudinal examination of HIV stigma and health.

Levels of HIV stigma remain high, however there is a limited understanding around how different types of stigma interact to impact health. This study uses data from two time points to examine how enacted and internalized stigma lead to worse health through anticipated stigma as a mediator. We recruited 341 participants in Ontario, Canada to complete the HIV Stigma Index survey at baseline (t1) from September 2018 to August 2019 and follow up (t2) approximately two years later. Mediation models were created with enacted and internalized stigma at t1 as the antecedents, anticipated stigma at t2 as the mediator, and physical health, mental health, and overall health at t2 as the outcomes. Only the model with internalized stigma (t1) as the antecedent had anticipated stigma (t2) as a significant mediator contributing to both decreased mental and overall health. This highlights the need to address internalized stigma and the potential for anticipated stigma interventions to be effective at improving the health and wellbeing of people living with HIV.

Parents' perspectives on SARS-CoV-2 vaccinations for children: a qualitative analysis.

BACKGROUND: Uptake of the SARS-CoV-2 vaccine for children aged 5-11 years has been lower than anticipated in Canada. Although research has explored parental intentions toward SARS-CoV-2 vaccination for children, parental decisions regarding vaccinations have not been studied in-depth. We sought to explore reasons why parents chose to vaccinate or not vaccinate their children against SARS-CoV-2 to better understand their decisions. METHODS: We conducted a qualitative study involving in-depth individual interviews with a purposive sample of parents in the Greater Toronto Area, Ontario, Canada. We conducted interviews via telephone or video call from February to April 2022 and analyzed the data using reflexive thematic analysis. RESULTS: We interviewed 20 parents. We found that parental attitudes toward SARS-CoV-2 vaccinations for their children represented a complex continuum of concern. We identified 4 cross-cutting themes: the newness of SARS-CoV-2 vaccines and the evidence supporting their use; the perceived politicization of guidance for SARS-CoV-2 vaccination; the social pressure surrounding SARS-CoV-2 vaccinations; and the weighing of individual versus collective benefits of vaccination. Parents found making a decision about vaccinating their child challenging and expressed difficulty sourcing and evaluating evidence, determining the trustworthiness of guidance, and balancing their own conceptions of health care decisions with societal expectations and political messaging. INTERPRETATION: Parents' experiences making decisions regarding SARS-CoV-2 vaccination for their children were complex, even for those who were supportive of SARS-CoV-2 vaccinations. These findings provide some explanation for the current patterns of uptake of SARS-CoV-2 vaccination among children in Canada; health care providers and public health authorities can consider these insights when planning future vaccine rollouts.

Barriers and enablers to health care providers assessment and treatment of knee osteoarthritis in persons with type 2 diabetes mellitus: A qualitative study using the Theoretical Domains Framework.

Objectives: Symptomatic knee osteoarthritis (OA) commonly co-exists in persons with Type 2 diabetes (T2DM) and may impede diabetes self-management. Yet, OA is often underdiagnosed and undertreated due to competing health care demands. We sought to determine healthcare providers' (HCPs') perceptions of the barriers and enablers to assessing and treating knee OA in persons with T2DM. Design: We conducted 18 semi-structured telephone interviews with HCPs who manage persons with T2DM (family physicians, endocrinologists, diabetes educators). Interviews were analyzed deductively using Theoretical Domains Framework (TDF), a framework developed to comprehensively identify behavioural determinants. Within relevant domains, data were thematically analyzed to generate belief statements, and these were compared across the different HCP disciplines. Results: Six TDF domains influenced HCPs behaviour to assess and treat knee OA in persons with T2DM. For all HCPs, important barriers included not seeing assessment/treatment of joint pain as a priority for their patients (intention), and insufficient access to required resources such as physiotherapy to treat OA (environmental context and resources). Endocrinologists and diabetes educators perceived having insufficient knowledge and skills to identify and manage OA (knowledge, skills), did not consider it within their professional role to do so (professional role and identity), and perceived other physicians would not want to receive a referral for OA care (social influences). Conclusions: We identified barriers and enablers encountered by diabetes HCPs to assessing and treating knee OA in persons with T2DM involving multiple domains of the TDF. These will help inform development of a complex intervention to improve health outcomes.

Understanding the behavioural determinants of seeking and engaging in care for knee osteoarthritis in persons with type 2 diabetes mellitus: A qualitative study using the theoretical domains framework.

Objectives: Symptomatic knee osteoarthritis (OA) frequently co-occurs in individuals with type 2 diabetes mellitus (T2DM). In the context of T2DM, OA is often underdiagnosed and undertreated. To elucidate strategies to improve OA care in persons with T2DM, we assessed their perceptions of the barriers and enablers to seeking and engaging in OA care. Design: We conducted semi-structured interviews with 18 individuals with T2DM and symptomatic knee OA in Ontario, Canada. Transcripts were deductively coded using the Theoretical Domains Framework (TDF), an implementation science framework that incorporates theoretical domains of behaviour determinants, which can be linked to behaviour change techniques. Within each of the relevant domains, data were thematically analyzed to generate belief statements. Results: Seven of the TDF domains prominently influenced the behaviour to seek and engage in OA care. Participants described insufficient receipt of OA knowledge to fully engage in care (knowledge), feeling incapable of participating in physical activity due to joint pain (beliefs about capabilities), uncertainty about effectiveness of therapies (optimism) and lack of guidance from health care providers and insufficient access to community programs/supports (environmental context and resources). Key enablers were strong social support (social influences), sources of accountability (behavioural regulation) and experiencing benefit from treatment (reinforcement). Participants did not see concomitant T2DM as limiting the desire to seek OA care. Conclusions: Among individuals with symptomatic knee OA and T2DM, we identified behavioural determinants of seeking and engaging in OA care. These will be mapped to behavioural change techniques to inform development of a complex intervention.

'It's a Dance Between Managing Both': a qualitative study exploring perspectives of persons with knee osteoarthritis and type 2 diabetes mellitus on the impact of osteoarthritis on diabetes management and daily life.

OBJECTIVES: Type 2 diabetes (T2DM) and knee osteoarthritis (OA) commonly co-occur and epidemiologic studies suggest concomitant symptomatic knee OA increases the risk of T2DM complications. We sought to explore the experiences and perspectives of individuals' living with both symptomatic knee OA and T2DM, with a focus on the impact of OA on T2DM management and daily life. DESIGN: We conducted qualitative semistructured telephone interviews with persons living with T2DM and knee OA. We inductively coded and analysed interview transcripts, informed by interpretative description. SETTING: We recruited participants from a community arthritis self-management programme and an academic hospital's family medicine clinic in Ontario, Canada. PARTICIPANTS: We included 18 participants who had a physician diagnosis of both T2DM and knee OA, with variation age, gender, and duration of T2DM and knee OA. RESULTS: Participants with T2DM described how concomitant painful and disabling knee OA made it difficult to engage in physical activity, negatively impacting blood glucose control. Joint pain itself, associated sleep disturbance and emotional distress were also seen to affect blood glucose control. Beyond diabetes management, the impact of OA-related pain and functional limitations on nearly all aspects of daily life led participants to view their OA as important. Despite this, many participants described that their health professionals paid little attention to their OA, which left them to self-manage. Balancing both conditions also required navigating a medical system that provided piecemeal care. CONCLUSIONS: Individuals with T2DM view symptomatic knee OA as an important barrier to both T2DM management and overall well-being, yet are frequently met with insufficient support from health professionals. Greater recognition and management of knee OA in persons with T2DM could help improve patient-centred care and potentially disease outcomes.

Design details for overdose education and take-home naloxone kits: Codesign with family medicine, emergency department, addictions medicine and community.

INTRODUCTION: Overdose education and naloxone distribution (OEND) programmes equip and train people who are likely to witness an opioid overdose to respond with effective first aid interventions. Despite OEND expansion across North America, overdose rates are increasing, raising questions about how to improve OEND programmes. We conducted an iterative series of codesign stakeholder workshops to develop a prototype for take-home naloxone (THN)-kit (i.e., two doses of intranasal naloxone and training on how to administer it). METHODS: We recruited people who use opioids, frontline healthcare providers and public health representatives to participate in codesign workshops covering questions related to THN-kit prototypes, training on how to use it, and implementation, including refinement of design artefacts using personas and journey maps. Completed over 9 months, the workshops were audio-recorded and transcribed with visible results of the workshops (i.e., sticky notes, sketches) archived. We used thematic analyses of these materials to identify design requirements for THN-kits and training. RESULTS: We facilitated 13 codesign workshops to identify and address gaps in existing opioid overdose education training and THN-kits and emphasize timely response and stigma in future THN-kit design. Using an iterative process, we created 15 prototypes, 3 candidate prototypes and a final prototype THN-kit from the synthesis of the codesign workshops. CONCLUSION: The final prototype is available for a variety of implementation and evaluation processes. The THN-kit offers an integrated solution combining ultra-brief training animation and physical packaging of nasal naloxone to be distributed in family practice clinics, emergency departments, addiction medicine clinics and community settings. PATIENT OR PUBLIC CONTRIBUTION: The codesign process was deliberately structured to involve community members (the public), with multiple opportunities for public contribution. In addition, patient/public participation was a principle for the management and structuring of the research team.

Equity-Mobilizing Partnerships in Community (EMPaCT): Co-Designing Patient Engagement to Promote Health Equity.

Equity-Mobilizing Partnerships in Community (EMPaCT) is a novel approach to patient engagement that centres diverse lived experiences and promotes equity-oriented and inclusive partnerships. As an independent community table, EMPaCT is made up primarily of patients/diverse members of community. Researchers and other decision makers come to this table with their projects to learn how to make their project more inclusive and equitable. In this paper, we detail how we used participatory co-design to define, build and grow EMPaCT as an innovative and scalable patient partnership model that promotes bottom-up action for health equity.

Toward equity-oriented cancer care: a Strategy for Patient-Oriented Research (SPOR) protocol to promote equitable access to lung cancer screening.

BACKGROUND: Screening for lung cancer with low dose CT can facilitate the detection of early-stage lung cancers that are amenable to treatment, reducing mortality related to lung cancer. Individuals are considered eligible for lung cancer screening if they meet specific high-risk criteria, such as age and smoking history. Population groups that are at highest risk of lung cancer, and therefore, the target of lung cancer screening interventions, are also the least likely to participate in lung cancer screening. This can lead to a widening of health inequities. Deliberate effort is needed to both reduce lung cancer risk (through upstream interventions that promote smoking cessation) as well as midstream interventions that promote equitable access to lung cancer screening. METHODS: This protocol paper describes an equity-informed patient-oriented research study. Our study aims to promote equitable access to lung cancer screening by partnering with patients to co-design an e-learning module for healthcare providers. The learning module will describe the social context of lung cancer risk and promote access to lung cancer screening by increasing equity at the point of care. We have applied the Generative Co-Design Framework for Healthcare Innovation and detail our study processes in three phases and six steps: Pre-design (establishing a study governance structure); Co-design (identifying research priorities, gathering and interpreting data, co-developing module content); and Post-design (pilot testing the module and developing an implementation plan). DISCUSSION: Patient engagement in research can promote the design and delivery of healthcare services that are accessible and acceptable to patients. This is particularly important for lung cancer screening as those at highest risk of developing lung cancer are also those who are least likely to participate in lung cancer screening. By detailing the steps of our participatory co-design journey, we are making visible the processes of our work so that they can be linked to future outcomes and related impact, and inform a wide range of patient co-led processes.

Lung cancer is the most commonly diagnosed cancer in Canada and is responsible for a quarter of all cancer-related deaths in the country. Screening for lung cancer using tools such as a CT scan can allow us to find lung cancers when they are still small and curable. People can receive a lung CT scan depending on how old they are and for how long they have smoked cigarettes. Certain groups of people, particularly those who have fewer resources such as time and money, and those who experience injustice because of who they are and how they look are less likely to participate in lung cancer screening. We can increase participation in lung cancer screening by educating healthcare providers on appropriate and timely ways to talk to patients about lung cancer screening. In this paper, we outline the steps of a patient-partnered study in which many different stakeholders such as patients, providers and policy-makers have come together with a goal to improve equity in access to lung cancer screening. We will do this by jointly creating an online learning module that will educate healthcare providers on how life experiences shape smoking behaviour and lung cancer risk. The module will also impart key skills on how to deliver care which is timely, appropriate and safe. Once the module is ready it will be freely available to all healthcare providers to support the fair and just delivery of lung cancer screening in the province of Ontario and elsewhere.

Developing a decision aid for youth with brachial plexus birth injuries facing treatment decisions for an elbow flexion contracture.

BACKGROUND: A common sequela of brachial plexus birth injury (BPBI) is an elbow flexion contracture. Youth with BPBI and their families face rehabilitation or surgical decisions that ideally entail careful deliberation of the risks and benefits of treatment within the context of the child's and family's functional and appearance-related goals. OBJECTIVE: To develop a patient decision aid (PtDA) following International Patient Decision Aid Standards to help these youth and their families make treatment decisions. DESIGN: Mixed-methods study. SETTING: Brachial plexus clinic in a pediatric tertiary care center. PARTICIPANTS: Five young adults (21-24 years), 14 youth (8-19 years) and their parents, 15 families (children 2-16 years), and 19 clinicians from a brachial plexus clinic participated in the PtDA development. Seventeen other youth (8-18 years) facing treatment decisions regarding their elbow contracture field tested the PtDA prototype. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: In-depth interviews and participant observation to conduct a decisional needs assessment of young adults, youth, parents, and health care professionals involved in these shared decisions. Cognitive interviews to field test the PtDA prototype. RESULTS: Evidence from previously conducted knowledge synthesis and the youth-focused decisional needs assessment qualitative data informed the development of new PtDA prototype, which included a questionnaire-based values clarification method for youth to rate what matters most to them regarding their elbow function, appearance, psychosocial impact, and treatment options. The majority (90%) of youth >11 years who field tested the PtDA prototype understood its content, whereas only 29% of those between 8 and 11 years demonstrated independent comprehension. The majority (69%) responded that they would prefer to use the PtDA on their own either at home or in the clinic waiting room. CONCLUSIONS: This new PtDA can be used to help youth with BPBI and their families to make a personal value-based informed decision regarding treatment options for their elbow flexion contracture.

Impact of experienced HIV stigma on health is mediated by internalized stigma and depression: results from the people living with HIV stigma index in Ontario.

BACKGROUND: Experiences of HIV stigma remain prevalent across Canada, causing significant stress and negatively affecting the health and wellbeing of people living with HIV. While studies have consistently demonstrated that stigma negatively impacts health, there has been limited research on the mechanisms behind these effects. This study aims to identify which dimensions of stigma have significant relationships with self-rated health and examine the mechanisms by which those types of stigma impact self-rated health. METHODS: We recruited 724 participants to complete the People Living with HIV Stigma Index in Ontario, designed by people living with HIV to measure nuanced changes in stigma and discrimination. The present study utilizes data from externally validated measures of stigma and health risks that were included in the survey. First, we conducted multiple regression analyses to examine which variables had a significant impact on self-rated health. Results from the multiple regression guided the mediation analysis. A parallel mediation model was created with enacted stigma as the antecedent, internalized stigma and depression as the mediators, and self-rated health as the outcome. RESULTS: In the multiple regression analysis, internalized stigma (coefficient = -0.20, p < 0.01) and depression (coefficient = -0.07, p < 0.01) were both significant and independent predictors of health. Mediation analyses demonstrated that the relationship between enacted stigma and self-rated health is mediated in parallel by both internalized stigma [coefficient = -0.08, se = 0.03, 95% CI (-0.14, -0.02)] and depression [coefficient = -0.16, se = 0.03, 95% CI (-0.22, -0.11)]. CONCLUSIONS: We developed a mediation model to explain how HIV-related stigma negatively impacts health. We found that that enacted stigma, or experiences of prejudice or discrimination, can lead to internalized stigma, or internalization of negative thoughts regarding one's HIV status and/or increased depressive symptoms which then may lead to worse overall health. Highlighting the importance of internalized stigma and depression has the potential to shape the development of targeted intervention strategies aimed at reducing the burden of stigma and improving the health and wellbeing of people living with HIV.

Building Equitable Patient Partnerships during the COVID-19 Pandemic: Challenges and Key Considerations for Research and Policy.

The unequal social and economic burden of the COVID-19 pandemic is evident in racialized and low-income communities across Canada. Importantly, social inequities have not been adequately addressed and current public policies are not reflective of the needs of diverse populations. Public participation in decision-making is crucial and there is, therefore, a pressing need to increase diversity of representation in patient partnerships in order to prevent the further exclusion of socially marginalized groups from research and policy making. Deliberate effort and affirmative action are needed to meaningfully engage and nurture diverse patient partnerships by broadening the scope of the patient community to include excluded or underrepresented individuals or groups. This will help us co-develop ways to enhance access and equity in healthcare and prevent the systematic reproduction of structural inequalities that have already been heightened by the COVID-19 pandemic.

Shared decision making in youth with brachial plexus birth injuries and their families: A qualitative study.

OBJECTIVE: The objective of this study is to elucidate the decision-making experiences of youth with brachial plexus birth injuries who face preference-sensitive decisions regarding treatment options for a persistent elbow contracture. METHODS: Transcripts, research-created drawings, and field notes from in-depth interviews with 5 young adults and 14 youth-parent dyads, and 15 participant observation sessions of families and clinicians in the clinic setting were deductively and inductively coded and thematically analyzed. RESULTS: Youth's shared decision making was influenced by relational processes with their clinicians and parents. Youth's trust in their clinicians' recommendations for pursuing treatment and pressure from their parents to pursue or continue rehabilitation treatment affected how their voices were expressed and heard. Parental emotional adjustment to the birth injury played a role in parental perceptions of what was deemed their youth's best interest in the shared decision. CONCLUSIONS: The decision-making experiences of youth with brachial plexus birth injury illustrate the complexity of paediatric preference-sensitive decisions and the significance of social and emotional factors on these shared decisions. PRACTICE IMPLICATIONS: Opportunity for youth to express their voice without external pressure during shared decision making is needed to make well-informed decisions based on their own values. Interventions such as decision coaching and decision support tools may help youth and parents to formally identify and discuss these relational processes.

The relationship between stigma and a rehabilitation framework [international classification of functioning, disability and health (ICF)]: three case studies of women living with HIV in Lusaka, Zambia.

PURPOSE: To explore how the International Classification of Functioning, Disability and Health, a rehabilitation framework, can provide a holistic understanding of stigma experiences of three women living with human immunodeficiency virus in Lusaka, Zambia. METHODS: A secondary analysis of three cases by drawing on interview transcripts collected as part of a larger longitudinal study with eighteen women living with the virus. The interview tool used the rehabilitation framework to ask questions about the impact of the virus on the body, daily activities, social participation and the future. Vignettes were produced for each of the eighteen women including information on stigma and the rehabilitation framework. Three case studies were developed from women who provided comprehensive accounts of stigma and the International Classification of Functioning, Disability and Health. RESULTS: Stigma experiences aligned well with three dimensions of the International Classification of Functioning, Disability and Health: participation restrictions, environmental and personal factors. These domains were used to understand stigma in three forms (i.e. enacted, self and structural stigma) as experienced by these women. CONCLUSIONS: More research is needed to ascertain how stigma and rehabilitation are related in other environments and populations and to explore how to mitigate stigma within the rehabilitation context.IMPLICATIONS FOR REHABILITATIONRehabilitation professionals deal with aspects of stigma and discrimination in their clinical work and this analysis offers a way to consider HIV-related stigma within rehabilitation in an organized and theoretically-informed way.The insights from this study are important for the field of HIV and for advancing understanding of the complexities of stigma in the context of rehabilitation more broadly.This analysis offers guidance to rehabilitation providers about the nuanced and multi-faceted ways that stigma can occur in the context of rehabilitation, including within their own clinical practice.

Experiences and perspectives of the parents of emerging adults living with type 1 diabetes.

INTRODUCTION: Whereas it is widely recognized that emerging adulthood can be a difficult time in the life of an individual living with type 1 diabetes, relatively little is known about the experiences of their parents or guardians. These individuals once shouldered much of the burden for their child's diabetes 'self'-management, yet their contribution is often overlooked by the adult healthcare system. Here, we set out to gain an understanding of the perspectives of parents of emerging adults living with type 1 diabetes. RESEARCH DESIGN AND METHODS: Semi-structured interviews were performed with a purposeful sample of parents of emerging adults with type 1 diabetes recruited from two urban young adult diabetes clinics and through a national diabetes charity. Thematic coding was derived using a constant comparative approach. RESULTS: Analysis of interviews with 16 parents of emerging adults with type 1 diabetes identified three themes: parental experiences of the transition to adult care; negotiating parent-child roles, responsibilities and relationships; and new and evolving fears. Parents spoke in detail about the time surrounding their child's diagnosis of type 1 diabetes to emphasize the complexity of diabetes care and the need to establish a 'new normal' for the family. In turn, adolescence and emerging adulthood required a renegotiation of roles and responsibilities, with many parents continuing to play a role in high-level diabetes management. Several parents of emerging adults with type 1 diabetes (particularly those of young men) vocalized worries about their child's readiness to assume responsibility for their self-care, and some expressed frustration with the apparent dichotomy in the role expectations of parents between the pediatric and adult care settings. CONCLUSIONS: Adult healthcare providers should recognize both the ongoing involvement of parents in the 'self'-management of emerging adults with type 1 diabetes and the unique aspects of the caregiver burden that they experience.

Cancer patients' experiences with immune checkpoint modulators: A qualitative study.

BACKGROUND: Minimal qualitative data exist on the experiences of cancer patients treated with immune checkpoint inhibitors or costimulatory antibodies. Understanding the day to day experiences of patients being treated with immune checkpoint modulators, and how these relate to their health-related quality of life, can inform future research and lead to better clinical decision-making and care. We report here the first in depth qualitative study to consider patients' diverse and complex experiences with immune checkpoint modulators, with a focus on side effects and how these impact daily life. METHODS: This single-center qualitative study was based on focus groups and semistructured interviews. Patients who were being treated or who had been treated with immune checkpoint modulators within the last year for a range of cancer diagnoses were recruited. Interpretive description informed our inductive, iterative approach to analysis. RESULTS: Eight themes were identified, characterizing the complexity of these patients' lived experiences: major categories of side effects experienced and how they impacted patient well-being; the heterogeneous nature of side effects experienced; living with uncertainty; reframing the meaning and severity of SEs; focus on survival, hope, and being positive; acceptance and adaptation; feeling supported; and faith in medical innovation. Throughout their accounts, participants highlighted the profound impact that immune checkpoint modulators had on their daily lives. CONCLUSION: This is the first in-depth qualitative study into patient accounts of their experiences of treatment with immune checkpoint modulators, related side effects, and how it impacted their daily lives. This research is an integral initial step in developing an instrument that will assess treatment-related side effects in patients treated with this form of therapy.

Protocol for a mixed-methods feasibility study for the surviving opioid overdose with naloxone education and resuscitation (SOONER) randomised control trial.

INTRODUCTION: The surviving opioid overdose with naloxone education and resuscitation (SOONER) project uses co-design and trial methods to develop and evaluate a point-of-care overdose education and naloxone distribution (OEND) tool. We plan to conduct a randomised controlled trial to assess the effectiveness of our OEND tool in comparison with best available standard of care by observing participants' performance as a responder to a simulated overdose. Recruiting and retaining people at risk of or likely to witness opioid overdose raises scientific, logistical and bioethical challenges. A feasibility study is needed to establish the effectiveness of recruitment and retention strategies and acceptability of study procedures prior to launching the full trial. METHODS AND ANALYSIS: Strategies to enhance recruitment include candidate-driven recruitment, verbal informed consent, and attractive, destigmatising materials. Adults at risk of or likely to witness opioid overdose will be recruited through an urban emergency department, inpatient and ambulatory addiction medicine service, and outpatient family practice settings. Participants randomised to the intervention arm will receive our OEND intervention; those in the control arm will be referred to existing OEND programme. Retention procedures include participant reminders, flexible scheduling, cash and comfort compensation, and strategies to maintain a consistent relationship between individual study staff and participants. Within 2 weeks following recruitment, participants will engage as a responder to a manikin-simulated overdose, and complete overdose knowledge and attitudes questionnaires. The primary outcome is recruitment and retention feasibility, defined as the recruitment of 28 participants within 28 days of recruitment and <50% attrition at the overdose simulation. Staff and participant feedback will also be collected and considered. ETHICS AND DISSEMINATION: The study has been reviewed by ethics boards at St. Michael's Hospital, Toronto Public Health and the University of Toronto. Dissemination will occur through peer-reviewed publication and presentations. TRIAL REGISTRATION NUMBER: ClinicalTrials.gov registry (NCT03821649).