"Can you hear me OK?": Caregivers of Children With Medical Complexity and Their Perspectives of Virtual Care During COVID-19.

INTRODUCTION: The rapid and widespread shift to virtual care during COVID-19 created new opportunities and unique challenges for families of children with medical complexity (CMC). However, few studies have examined perceptions of virtual care during the pandemic in this population. METHOD: To address this gap, the current study used a qualitative approach and semistructured interviews via Zoom to explore parent perspectives of virtual care. Purposive sampling was used to recruit 30 parents residing with their CMC (aged 0-18 years) in British Columbia, Canada. RESULTS: The findings identified from the data included (1) advantages and opportunities, (2) concerns and challenges, and (3) parent choice and preference. DISCUSSION: Our findings indicate the need for healthcare professionals to receive training to use virtual care in their practice effectively. In addition, policies about standards for virtual care and ensuring families have access to the necessary technology will help reduce barriers and improve equity and inclusion for this population.

"A very different place from when the pandemic started": Lessons learned for improving systems of care for families of children with medical complexity.

Coronavirus disease 2019 (COVID-19) created unprecedented challenges for everyone, but especially families of children with medical complexity (MC) who rely on a comprehensive range of health and social services in their daily lives. Yet despite this, there are limited studies exploring caregiver perspectives regarding access to health and social services during the pandemic. To address this gap, we aimed to explore how health and social services can better meet the needs of children with MC and their families. Sixteen parents residing with their children with MC (from birth to 18 years) in British Columbia, Canada participated in semi-structured interviews between July 2021 and April 2022. Findings revealed two different areas to improve services for families of children with MC, those relating to technology and family-centered care. Parents prioritized expanding the use of digital communication tools to support service navigation and scheduling. Virtual platforms were viewed as being valuable for building connections with other families and their community. In terms of family-centered care, parents emphasized the importance of policies recognizing the physical, emotional, and financial needs of the family. Findings have important implications for improving services to enhance the well-being and quality of life of children with MC and their families.

Exploring the Impacts of COVID-19 Public Health Measures on Community-Dwelling People Living With Dementia and Their Family Caregivers: A Longitudinal, Qualitative Study.

Since the onset of the COVID-19 pandemic, community-dwelling people living with dementia and their family caregivers have experienced many challenges. The unanticipated consequences of public health measures have impacted these families in a myriad of ways. In this interpretive policy analysis, which used a longitudinal, qualitative methodology, we purposively recruited 12 families in British Columbia, Canada, to explore the impacts of pandemic public health measures over time. Semi-structured interviews were conducted every 3 months and participants completed diary entries. Twenty-eight interviews and 34 diary entries were thematically analyzed. The findings explore ways that families adopted and adapted to public health measures, loss of supports, both formal and informal, and the subsequent consequences for their mental and physical well-being. Within the ongoing context of the pandemic, as well as potential future wide-spread emergencies, it is imperative that programs and supports are restarted and maintained to avoid further harm to these families.

The Efficacy of a Health Promotion Intervention for Indigenous Women: Reclaiming Our Spirits.

Indigenous women globally are subjected to high rates of multiple forms of violence, including intimate partner violence (IPV), yet there is often a mismatch between available services and Indigenous women's needs and there are few evidence-based interventions specifically designed for this group. Building on an IPV-specific intervention (Intervention for Health Enhancement After Leaving [iHEAL]), "Reclaiming Our Spirits" (ROS) is a health promotion intervention developed to address this gap. Offered over 6 to 8 months in a partnership between nurses and Indigenous Elders, nurses worked individually with women focusing on six areas for health promotion and integrated health-related workshops within weekly Circles led by an Indigenous Elder. The efficacy of ROS in improving women's quality of life and health was examined in a community sample of 152 Indigenous women living in highly marginalizing conditions in two Canadian cities. Participants completed standard self-report measures of primary (quality of life, trauma symptoms) and secondary outcomes (depressive symptoms, social support, mastery, personal agency, interpersonal agency, chronic pain disability) at three points: preintervention (T1), postintervention (T2), and 6 months later (T3). In an intention-to-treat (ITT) analysis, Generalized Estimating Equations (GEE) were used to examine hypothesized changes in outcomes over time. As hypothesized, women's quality of life and trauma symptoms improved significantly pre- to postintervention and these changes were maintained 6 months later. Similar patterns of improvement were noted for five of six secondary outcomes, although improvements in interpersonal agency were not maintained at T3. Chronic pain disability did not change over time. Within a context of extreme poverty, structural violence, and high levels of trauma and substance use, some women enrolled but were unable to participate. Despite the challenging circumstances in the women's lives, these findings suggest that this intervention has promise and can be effectively tailored to the specific needs of Indigenous women.

Reclaiming Our Spirits: Development and Pilot Testing of a Health Promotion Intervention for Indigenous Women Who Have Experienced Intimate Partner Violence.

Indigenous women are subjected to high rates of multiple forms of violence, including intimate partner violence (IPV), in the context of ongoing colonization and neo-colonization. Health promotion interventions for women who experience violence have not been tailored specifically for Indigenous women. Reclaiming Our Spirits (ROS) is a health promotion intervention designed for Indigenous women living in an urban context in Canada. In this paper, we describe the development of the intervention, results of a pilot study, and the revised subsequent intervention. Building on a theory-based health promotion intervention (iHEAL) showing promising results in feasibility studies, ROS was developed using a series of related approaches including (a) guidance from Indigenous women with research expertise specific to IPV and Indigenous women's experiences; (b) articulation of an Indigenous lens, including using Cree (one of the largest Indigenous language groups in North America) concepts to identify key aspects; and (c) interviews with Elders (n = 10) living in the study setting. Offered over 6-8 months, ROS consists of a Circle, led by an Indigenous Elder, and 1:1 visits with a Registered Nurse, focused on six areas for health promotion derived from previous research. Pilot testing with Indigenous women (n = 21) produced signs of improvement in most measures of health from pre- to post-intervention. Women found the pilot intervention acceptable and helpful but also offered valuable suggestions for improvement. A revised intervention, with greater structure within the Circle and nurses with stronger knowledge of Indigenous women's experience and community health, is currently undergoing testing. © 2017 Wiley Periodicals, Inc.

Enhancing health care equity with Indigenous populations: evidence-based strategies from an ethnographic study.

BACKGROUND: Structural violence shapes the health of Indigenous peoples globally, and is deeply embedded in history, individual and institutional racism, and inequitable social policies and practices. Many Indigenous communities have flourished, however, the impact of colonialism continues to have profound health effects for Indigenous peoples in Canada and internationally. Despite increasing evidence of health status inequities affecting Indigenous populations, health services often fail to address health and social inequities as routine aspects of health care delivery. In this paper, we discuss an evidence-based framework and specific strategies for promoting health care equity for Indigenous populations. METHODS: Using an ethnographic design and mixed methods, this study was conducted at two Urban Aboriginal Health Centres located in two inner cities in Canada, which serve a combined patient population of 5,500. Data collection included in-depth interviews with a total of 114 patients and staff (n = 73 patients; n = 41 staff), and over 900 h of participant observation focused on staff members' interactions and patterns of relating with patients. RESULTS: Four key dimensions of equity-oriented health services are foundational to supporting the health and well-being of Indigenous peoples: inequity-responsive care, culturally safe care, trauma- and violence-informed care, and contextually tailored care. Partnerships with Indigenous leaders, agencies, and communities are required to operationalize and tailor these key dimensions to local contexts. We discuss 10 strategies that intersect to optimize effectiveness of health care services for Indigenous peoples, and provide examples of how they can be implemented in a variety of health care settings. CONCLUSIONS: While the key dimensions of equity-oriented care and 10 strategies may be most optimally operationalized in the context of interdisciplinary teamwork, they also serve as health equity guidelines for organizations and providers working in various settings, including individual primary care practices. These strategies provide a basis for organizational-level interventions to promote the provision of more equitable, responsive, and respectful PHC services for Indigenous populations. Given the similarities in colonizing processes and Indigenous peoples' experiences of such processes in many countries, these strategies have international applicability.

Can ethnicity data collected at an organizational level be useful in addressing health and healthcare inequities?

OBJECTIVE: Following arguments made in the USA, the UK and New Zealand regarding the importance of population-level ethnicity data in understanding health and healthcare inequities, health authorities in several Canadian provinces are considering plans to collect ethnicity data from patients at the point of care within selected healthcare organizations. The purpose of this paper is to examine the potential quality, utility and relevance of ethnicity data collected at an organizational level as a means of addressing health and healthcare inequities. DESIGN: We draw on findings from a recent Canadian study that examined the implications of collecting ethnicity data in healthcare contexts. Using a qualitative design, data were collected in a large city, and included interviews with 104 patients, community and healthcare leaders, and healthcare workers within diverse clinical contexts. Data were analyzed using interpretive thematic analysis. RESULTS: Our results are discussed in relation to discourses reflected in the current literature that require consideration in relation to the potential utility and relevancy of ethnicity data collected at the point of care within healthcare organizations. These discourses frame excerpts from the ethnographic data that are used as illustrative examples. Three key challenges to the potential relevance and utility of ethnicity data collected at the level of local healthcare organizations are identified: (a) issues pertaining to quality of the data, (b) the fact that data quality is most problematic for those with the greatest vulnerability to the negative effects of health inequities, and (c) the lack of data reflecting structural disadvantages or discrimination. CONCLUSION: The quality of ethnicity data collected within healthcare organizations is often unreliable, particularly for people from racialized or visible minority groups, who are most at risk, seriously limiting the usefulness of the data. Quality measures for collecting data reflecting ethnocultural identity in specific healthcare organizations may be warranted - but only if mechanisms exist or are developed for linking ethnicity with measures of perceived discrimination, stigmatization, income level, and other known contributors to inequities. Methods for linking these kinds of data, however, remain underdeveloped or non-existent in most healthcare organizations.

Closing the health equity gap: evidence-based strategies for primary health care organizations.

INTRODUCTION: International evidence shows that enhancement of primary health care (PHC) services for disadvantaged populations is essential to reducing health and health care inequities. However, little is known about how to enhance equity at the organizational level within the PHC sector. Drawing on research conducted at two PHC Centres in Canada whose explicit mandates are to provide services to marginalized populations, the purpose of this paper is to discuss (a) the key dimensions of equity-oriented services to guide PHC organizations, and (b) strategies for operationalizing equity-oriented PHC services, particularly for marginalized populations. METHODS: The PHC Centres are located in two cities within urban neighborhoods recognized as among the poorest in Canada. Using a mixed methods ethnographic design, data were collected through intensive immersion in the Centres, and included: (a) in-depth interviews with a total of 114 participants (73 patients; 41 staff), (b) over 900 hours of participant observation, and (c) an analysis of key organizational documents, which shed light on the policy and funding environments. RESULTS: Through our analysis, we identified four key dimensions of equity-oriented PHC services: inequity-responsive care; trauma- and violence-informed care; contextually-tailored care; and culturally-competent care. The operationalization of these key dimensions are identified as 10 strategies that intersect to optimize the effectiveness of PHC services, particularly through improvements in the quality of care, an improved 'fit' between people's needs and services, enhanced trust and engagement by patients, and a shift from crisis-oriented care to continuity of care. Using illustrative examples from the data, these strategies are discussed to illuminate their relevance at three inter-related levels: organizational, clinical programming, and patient-provider interactions. CONCLUSIONS: These evidence- and theoretically-informed key dimensions and strategies provide direction for PHC organizations aiming to redress the increasing levels of health and health care inequities across population groups. The findings provide a framework for conceptualizing and operationalizing the essential elements of equity-oriented PHC services when working with marginalized populations, and will have broad application to a wide range of settings, contexts and jurisdictions. Future research is needed to link these strategies to quantifiable process and outcome measures, and to test their impact in diverse PHC settings.

The social paediatrics initiative: a RICHER model of primary health care for at risk children and their families.

BACKGROUND: The Responsive Interdisciplinary Child-Community Health Education and Research (RICHER) initiative is an intersectoral and interdisciplinary community outreach primary health care (PHC) model. It is being undertaken in partnership with community based organizations in order to address identified gaps in the continuum of health services delivery for 'at risk' children and their families. As part of a larger study, this paper reports on whether the RICHER initiative is associated with increased: 1) access to health care for children and families with multiple forms of disadvantage and 2) patient-reported empowerment. This study provides the first examination of a model of delivering PHC, using a Social Paediatrics approach. METHODS: This was a mixed-methods study, using quantitative and qualitative approaches; it was undertaken in partnership with the community, both organizations and individual providers. Descriptive statistics, including logistic regression of patient survey data (n=86) and thematic analyses of patient interview data (n=7) were analyzed to examine the association between patient experiences with the RICHER initiative and parent-reported empowerment. RESULTS: Respondents found communication with the provider clear, that the provider explained any test results in a way they could understand, and that the provider was compassionate and respectful. Analysis of the survey and in-depth interview data provide evidence that interpersonal communication, particularly the provider's interpersonal style (e.g., being treated as an equal), was very important. Even after controlling for parents' education and ethnicity, the provider's interpersonal style remained positively associated with parent-reported empowerment (p<0.01). CONCLUSIONS: This model of PHC delivery is unique in its purposeful and required partnerships between health care providers and community members. This study provides beginning evidence that RICHER can better meet the health and health care needs of people, especially those who are vulnerable due to multiple intersecting social determinants of health. Positive interpersonal communication from providers can play a key role in facilitating situations where individuals have an opportunity to experience success in managing their and their family's health.

Understanding the gender aspects of tuberculosis: a narrative analysis of the lived experiences of women with TB in slums of Delhi, India.

There have been few ethnographic studies on gender aspects of tuberculosis (TB). In this article, drawing on a qualitative study on TB in Delhi slums and through an intersectional analysis of group interviews and personal narratives of women living with TB, I bring forth the "genderization" of TB and the associated sufferings for women. With my findings I demonstrate how gender, in conjunction with other social forces, influences the disease outcomes and stigmatizes women, how lives in slums are uniquely organized by multiple discourses that contribute to the gender makings of TB, and, finally, how women strategize to reduce their burden of illness.

Uptake of critical knowledge in nursing practice: lessons learned from a knowledge translation study.

This article is based on a knowledge translation (KT) study of the transition of patients from hospital to home. It focuses on the lessons learned about the challenges of translating research-derived critical knowledge in practice settings. The authors situate the article in current discourses about KT; discuss their understanding of the nature of critical knowledge; and present themes from their body of research, which comprises the knowledge that was translated. The findings have the potential to guide future KT research that focuses on the uptake of critical knowledge in nursing practice.

Narratives of "dissonance" and "repositioning" through the lens of critical humanism: exploring the influences on immigrants' and refugees' health and well-being.

The focus of this article is on narratives of "starting over," and the embedded processes, conceptualized as "dissonance"--between what people had expected to find in Canada and their actual experiences, and "repositioning"--how they subsequently restructured their lives and redefined their identities. This narrative analysis is one way of illuminating the complex ways in which social support networks influence dissonance and repositioning, and subsequently influence health and well-being.

Inequities in health and healthcare viewed through the ethical lens of critical social justice: contextual knowledge for the global priorities ahead.

The authors use the backdrop of the Healthy People 2010 initiative to contribute to a discussion encompassing social justice from local to national to global contexts. Drawing on findings from their programs of research, they explore the concept of critical social justice as a powerful ethical lens through which to view inequities in health and in healthcare access. They examine the kind of knowledge needed to move toward the ideal of social justice and point to strategies for engaging in dialogue about knowledge and actions to promote more equitable health and healthcare from local to global levels.

Critical inquiry and knowledge translation: exploring compatibilities and tensions.

Knowledge translation has been widely taken up as an innovative process to facilitate the uptake of research-derived knowledge into health care services. Drawing on a recent research project, we engage in a philosophic examination of how knowledge translation might serve as vehicle for the transfer of critically oriented knowledge regarding social justice, health inequities, and cultural safety into clinical practice. Through an explication of what might be considered disparate traditions (those of critical inquiry and knowledge translation), we identify compatibilities and discrepancies both within the critical tradition, and between critical inquiry and knowledge translation. The ontological and epistemological origins of the knowledge to be translated carry implications for the synthesis and translation phases of knowledge translation. In our case, the studies we synthesized were informed by various critical perspectives and hence we needed to reconcile differences that exist within the critical tradition. A review of the history of critical inquiry served to articulate the nature of these differences while identifying common purposes around which to strategically coalesce. Other challenges arise when knowledge translation and critical inquiry are brought together. Critique is one of the hallmark methods of critical inquiry and, yet, the engagement required for knowledge translation between researchers and health care administrators, practitioners, and other stakeholders makes an antagonistic stance of critique problematic. While knowledge translation offers expanded views of evidence and the complex processes of knowledge exchange, we have been alerted to the continual pull toward epistemologies and methods reminiscent of the positivist paradigm by their instrumental views of knowledge and assumptions of objectivity and political neutrality. These types of tensions have been productive for us as a research team in prompting a critical reconceptualization of knowledge translation.

Pursuing common agendas: a collaborative model for knowledge translation between research and practice in clinical settings.

There is an emerging discourse of knowledge translation that advocates a shift away from unidirectional research utilization and evidence-based practice models toward more interactive models of knowledge transfer. In this paper, we describe how our participatory approach to knowledge translation developed during an ongoing program of research concerning equitable care for diverse populations. At the core of our approach is a collaborative relationship between researchers and practitioners, which underpins the knowledge translation cycle, and occurs simultaneously with data collection/analysis/synthesis. We discuss lessons learned including: the complexities of translating knowledge within the political landscape of healthcare delivery, the need to negotiate the agendas of researchers and practitioners in a collaborative approach, and the kinds of resources needed to support this process.

Easing the transition between hospital and home: translating knowledge into action.

Knowledge translation is an interactive, dynamic approach to the uptake of evidence-based knowledge. In this article, the authors present a collaborative model for knowledge translation that grew out of a program of research focusing on the experiences of patients from ethnoculturally diverse groups as they were discharged home from hospital. Research findings highlight issues around gaps in the continuity of services and language and communication. The authors discuss a number of knowledge translation initiatives that were developed to address these gaps. Key to the success of this process has been a collaborative relationship between researchers and practitioners that is grounded in the shared goal of knowledge translation to support ethically sound decision-making in the delivery of health-care services.

Riting" cultural safety within the postcolonial and postnational feminist project: toward new epistemologies of healing.

The concept of cultural safety, developed by indigenous nurses in the postcolonial climate of New Zealand, has not been widely examined in North America. In this article we explicate the theoretical and methodological issues that came to the forefront in our attempts to use this concept in our research with different populations in Canada. We argue that this concept prompts us to "think critically" about ourselves and our patients, and to be mindful of our own sociocultural, economic, and historical location. This critical reflection has implications for how we live, relate to one another, and practice in our various professional disciplines. On the basis of our findings, we discuss how the concept might be rewritten within a critical postcolonial and postnational feminist discourse.