The Unexpected Benefits of a Decolonized Knowledge Translation Initiative for Indigenous Mother Participants.

Western health research's approach to knowledge translation (KT) has been criticized by Indigenous scholars, leaders, and communities for its misalignment with Indigenous ways of knowing and relational approaches to sharing knowledge. Conversely, Indigenous KT is understood as 'sharing what we know about living a good life' (Kaplan-Myrth & Smylie, 2006). Whereas KT in Euro-Western science contexts focuses on closing the know-do gap implying a separation of knowledge and action, knowledge in the Indigenous context is inherently practical and based on centuries old practices including oral traditions, experiential knowledge, and cross-cultural sharing. This article describes the development of a decolonized KT strategy. This community-engaged KT initiative was developed at the suggestion of Indigenous mothers who participated in a research study in Hamilton, Canada, which examined their experiences using health care to meet the health needs of their infants. Indigenous mothers participated in three main roles related to the KT activities: sharing their story in video, participating as team members on an Advisory Board, and directing the creation of a video series and website educational resource (KT strategy). Five Indigenous mothers participated as members of the Advisory Board. The process of participating had positive impacts on the mothers, namely, empowerment, strength, 'I am not alone', and healing. These unexpected findings, which go beyond the original project purpose to create an educational resource, show the significant and important benefits for research participants, particularly those from Indigenous communities, to be involved in decolonized KT strategies.

Exploring the Lived Experience of Self-management Practices of Indigenous Men, Women and Two-spirited Individuals Living With Type 2 Diabetes in Canada, the United States, Australia, and New Zealand: A Scoping Review.

OBJECTIVES: Indigenous men, women and two-spirted individuals have been significantly impacted by type 2 diabetes mellitus (T2DM) and its complications. It is believed that T2DM in Indigenous peoples is a direct result of colonization and the introduction of changes to traditional Indigenous ways of knowing, being, and living. The broader question will guide the aim of this scoping review: What is currently known about the lived experience of self-managing diabetes in Indigenous men, women, and two-spirited individuals living with T2DM in Canada, the United States, Australia and New Zealand? Specific objectives of this scoping review include 1) exploring the lived experience of self-management practices of Indigenous men, women, and two-spirited individuals living with T2DM; and 2) describing how self-management experiences differ from physical, emotional, mental, and spiritual perspectives. METHODS: A total of 6 databases were searched, including Ovid MEDLINE, Embase, PsychINFO, CINAHL, Cochrane, and the Native Health Database. An example of keywords searched included "self-management," "Indigenous," and "type 2 diabetes mellitus." A total of 37 articles were included in the synthesis of results, and the 4 quadrants of the Medicine Wheel were used to organize and interpret data. RESULTS: The use of culture within self-management practices was important for Indigenous peoples. Demographic data were collected for many of the studies, including sex and gender characteristics, but only a small number of studies addressed the influence of sex and gender on outcomes. CONCLUSION: Our findings inform future Indigenous diabetes education and health-care service delivery and future research.

Mental health and well-being of unpaid caregivers: a cross-sectional survey protocol.

INTRODUCTION: Unpaid caregiving, care provided by family/friends, is a public health issue of increasing importance. COVID-19 worsened the mental health conditions of unpaid caregivers, increasing substance/drug use and early development of chronic disease. The impact of the intersections of race and ethnicity, sex, age and gender along with unpaid care work and caregivers' health and well-being is unknown. The aim of this study is to describe the inequities of caregiver well-being across the intersections of race and ethnicity, sex, age and gender using a cross-sectional survey design. METHODS AND ANALYSIS: We are collaborating with unpaid caregivers and community organisations to recruit a non-probability sample of unpaid caregivers over 18 years of age (n=525). Recruitment will focus on a target sample of 305 South Asian, Chinese and Black people living in Canada, who represent 60% of the Canadian racial and ethnic populations. The following surveys will be combined into one survey: Participant Demographic Form, Caregiver Well-Being Index, interRAI Self-report of Carer Needs and the GENESIS (GENdEr and Sex DetermInantS of Cardiovascular Disease: From Bench to Beyond-Premature Acute Coronary Syndrome) PRAXY Questionnaire. Sample characteristics will be summarised using descriptive statistics. The scores from the Caregiver Well-Being Index will be dichotomised into fair/poor and good/excellent. A two-stage analytical strategy will be undertaken using logistic regression to model fair/poor well-being and good/excellent well-being according to the following axes of difference set a priori: sex, race and ethnicity, gender identity, age, gender relations, gender roles and institutionalised gender. The first stage of analysis will model the main effects of each factor and in the second stage of analysis, interaction terms will be added to each model. ETHICS AND DISSEMINATION: The University of Toronto's Health Sciences Research Ethics Board granted approval on 9 August 2022 (protocol number: 42609). Knowledge will be disseminated in pamphlets/infographics/email listservs/newsletters and journal articles, conference presentation and public forums, social media and through the study website. TRIAL REGISTRATION NUMBER: This is registered in the Open Sciences Framework with a Registration DOI as follows: https://doi.org/10.17605/OSF.IO/PB9TD.

Patient engagement partnerships in clinical trials (PEP-CT): protocol for the systematic development and testing of patient partner and investigator decision aids.

INTRODUCTION: Building capacity to improve sex/gender knowledge and strengthen patient engagement in clinical trials requires training and support. The overall goal of this 2-year project is to refine, translate and evaluate two web-based open-access patient and investigator decision aids aimed to improve patient engagement partnerships in clinical trials. METHODS AND ANALYSIS: Two decision aids were designed in Phase 1 of this programme of research and this protocol describes a subsequent sequential phased approach to refine/translate (Phase 2A) and conduct alpha/usability (Phase 2B) and beta/field (Phase 3) testing. Decision aid development is guided by the International Patient Decision Aid Standards, User-Centred Design, Ottawa Decision-Support Framework and the Ottawa Model of Research Use. We have integrated patient-oriented research methods by engaging patient partners across all phases of our programme of research. Decision aids will first be refined and then translated to French (Phase 2A). Eight iterative cycles of semistructured interviews with 40 participants (20 patient partners and 20 investigators) will be conducted to determine usability (Phase 2B). A pragmatic pre/post pilot study design will then be implemented for field/beta testing using another purposive sample of 80 English-speaking and French-speaking participants (40 patients and 40 investigators). The samples are purposive to ensure an equal representation of English-speaking and French-speaking participants and an equal representation of men and women. Since sex and/or gender differences in utilisation and effectiveness of decision aids have not been previously reported, Phase 3 outcomes will be reported for the total sample and separately for men and women. ETHICS AND DISSEMINATION: Ethics approval has been granted from the University of Toronto (41109, 28 September 2021). Informed consent will be obtained from participants. Dissemination will include co-authored publications, conference presentations, educational national public forums, fact sheets/newsletters, social media sharing and videos/webinars.