Melissa Giesbrecht

An intersectionality-based policy analysis framework: critical reflections on a methodology for advancing equity

IntroductionIn the field of health, numerous frameworks have emerged that advance understandings of the differential impacts of health policies to produce inclusive and socially just health outcomes. In this paper, we present the development of an important contribution to these efforts – an Intersectionality-Based Policy Analysis (IBPA) Framework.MethodsDeveloped over the course of two years in consultation with key stakeholders and drawing on best and promising practices of other equity-informed approaches, this participatory and iterative IBPA Framework provides guidance and direction for researchers, civil society, public health professionals and policy actors seeking to address the challenges of health inequities across diverse populations. Importantly, we present the application of the IBPA Framework in seven priority health-related policy case studies.ResultsThe analysis of each case study is focused on explaining how IBPA: 1) provides an innovative structure for critical policy analysis; 2) captures the different dimensions of policy contexts including history, politics, everyday lived experiences, diverse knowledges and intersecting social locations; and 3) generates transformative insights, knowledge, policy solutions and actions that cannot be gleaned from other equity-focused policy frameworks.ConclusionThe aim of this paper is to inspire a range of policy actors to recognize the potential of IBPA to foreground the complex contexts of health and social problems, and ultimately to transform how policy analysis is undertaken.

Critically examining diversity in end-of-life family caregiving: implications for equitable caregiver support and Canada’s Compassionate Care Benefit

IntroductionFamily (i.e., unpaid) caregiving has long been thought of as a ‘woman’s issue’, which ultimately results not only in gendered, but also financial and health inequities. Because of this, gender-based analyses have been prioritized in caregiving research. However, trends in current feminist scholarship demonstrate that gender intersects with other axes of difference, such as culture, socio-economic status, and geography to create diverse experiences. In this analysis we examine how formal front-line palliative care providers understand the role of such diversities in shaping Canadian family caregivers’ experiences of end-of-life care. In doing so we consider the implications of these findings for a social benefit program aimed at supporting family caregivers, namely the Compassionate Care Benefit (CCB).MethodsThis analysis contributes to a utilization-focused evaluation of Canada’s CCB, a social program that provides job security and limited income assistance to Canadian family caregivers who take a temporary leave from employment to provide care for a dying family member at end-of-life. Fifty semi-structured phone interviews with front-line palliative care providers from across Canada were conducted and thematic diversity analysis of the transcripts ensued.ResultsFindings reveal that experiences of caregiving are not homogenous and access to services and supports are not universal across Canada. Five axes of difference were commonly raised by front-line palliative care providers when discussing important differences in family caregivers’ experiences: culture, gender, geography, lifecourse stage, and material resources. Our findings reveal inequities with regard to accessing needed caregiver services and resources, including the CCB, based on these axes of difference.ConclusionsWe contend that without considering diversity, patterns in vulnerability and inequity are overlooked, and thus continually reinforced in health policy. Based on our findings, we demonstrate that re-framing categorizations of caregivers can expose specific vulnerabilities and inequities while identifying implications for the CCB program as it is currently administered. From a policy perspective, this analysis demonstrates why diversity needs to be acknowledged in policy circles, including in relation to the CCB, and seeks to counteract single dimensional approaches for understanding caregiver needs at end-of-life. Such findings illustrate how diversity analysis can dramatically enhance evaluative health policy research.

Canada's Compassionate Care Benefit: Is it an adequate public health response to addressing the issue of caregiver burden in end-of-life care?

BackgroundAn increasingly significant public health issue in Canada, and elsewhere throughout the developed world, pertains to the provision of adequate palliative/end-of-life (P/EOL) care. Informal caregivers who take on the responsibility of providing P/EOL care often experience negative physical, mental, emotional, social and economic consequences. In this article, we specifically examine how Canadas Compassionate Care Benefit (CCB) - a contributory benefits social program aimed at informal P/EOL caregivers - operates as a public health response in sustaining informal caregivers providing P/EOL care, and whether or not it adequately addresses known aspects of caregiver burden that are addressed within the population health promotion (PHP) model.MethodsAs part of a national evaluation of Canadas Compassionate Care Benefit, 57 telephone interviews were conducted with Canadian informal P/EOL caregivers in 5 different provinces, pertaining to the strengths and weaknesses of the CCB and the general caregiving experience. Interview data was coded with Nvivo software and emerging themes were identified by the research team, with such findings published elsewhere. The purpose of the present analysis was identified after comparing the findings to the literature specific to caregiver burden and public health, after which data was analyzed using the PHP model as a guiding framework.ResultsInformal caregivers spoke to several of the determinants of health outlined in the PHP model that are implicated in their burden experience: gender, income and social status, working conditions, health and social services, social support network, and personal health practises and coping strategies. They recognized the need for improving the CCB to better address these determinants.ConclusionsThis study, from the perspective of family caregivers, demonstrates that the CCB is not living up to its full potential in sustaining informal P/EOL caregivers. Effort is required to transform the CCB so that it may fulfill the potential it holds for serving as one public health response to caregiver burden that forms part of a healthy public policy that addresses the determinants of this burden.

Death Is a Social Justice Issue: Perspectives on Equity-Informed Palliative Care.

All too often, palliative care services are not responsive to the needs of those who are doubly vulnerable, being that they are both in need of palliative care services and experiencing deficits in the social determinants of health that result in complex, intersecting health and social concerns. In this article, we argue for a reorientation of palliative care to explicitly integrate the premises of health equity. We articulate the philosophical, theoretical, and empirical scaffolding required for equity-informed palliative care and draw on a current study to illustrate such an approach to the care of people who experience structural vulnerabilities.

Exploring the daily geographies of diverse men caregiving for family members with multiple chronic conditions

Abstract Within Canada, it has been estimated that almost half of all family, also known as informal, caregivers are now men. However, the contributions and experiences of these caregiver men have received relatively little attention, particularly from geographies of care and caregiving researchers. This analysis hopes to shed light on the unique, yet diverse, experiences of men caregiving for persons with multiple chronic conditions in Canada. Drawing on semi-structured interviews with nineteen men caregivers in two provinces of Canada, this analysis aims to explore how social and physical axes of difference shape men’s daily lived geographies when providing care. Our thematic findings reveal that caregiving is experienced by participants at the three scalar levels of the body, the home and the community. Our intersectional analysis reveals that at each scalar level, being a man was not the only variable shaping caregiving experiences. Rather, it was also age, physical capacity, culture, socio-economic status, marital status, housing status, social connectedness, relationship to the care recipient and care recipients’ physical and mental capacity that shaped experiences and meanings of place during the caregiving process. Accounting for this diversity at each scale, our findings point to the unique stresses and challenges experienced. We conclude by emphasizing the significance in acknowledging the diverse challenges that exist for all caregivers in order to inform comprehensive and inclusive social policy that ultimately will produce equitable caregiver supports.

Community readiness and momentum: identifying and including community-driven variables in a mixed-method rural palliative care service siting model

BackgroundHealth service administrators make decisions regarding how to best use limited resources to have the most significant impact. Service siting models are tools that can help in this capacity. Here we build on our own mixed-method service siting model focused on identifying rural Canadian communities most in need of and ready for palliative care service enhancement through incorporating new community-driven insights.MethodsWe conducted 40 semi-structured interviews with formal and informal palliative care providers from four purposefully selected rural communities across Canada. Communities were selected by running our siting model, which incorporated GIS methods, and then identifying locations suitable as qualitative case studies. Participants were identified using multiple recruitment methods. Interviews were transcribed verbatim and the transcripts were reviewed to identify emerging themes and were coded accordingly. Thematic analysis then ensued.ResultsWe previously introduced the inclusion of a ‘community readiness’ arm in the siting model. This arm is based on five community-driven indicators of palliative care service enhancement readiness and need. The findings from the current analysis underscore the importance of this arm of the model. However, the data also revealed the need to subjectively assess the presence or absence of community awareness and momentum indicators. The interviews point to factors such as educational tools, volunteers, and local acknowledgement of palliative care priorities as reflecting the presence of community awareness and factors such as new employment and volunteer positions, new care spaces, and new projects and programs as reflecting momentum. The diversity of factors found to illustrate these indicators between our pilot study and current national study demonstrate the need for those using our service siting model to look for contextually-relevant signs of their presence.ConclusionAlthough the science behind siting model development is established, few researchers have developed such models in an open way (e.g., documenting every stage of model development, engaging with community members). This mixed-method study has addressed this notable knowledge gap. While we have focused on rural palliative care in Canada, the process by which we have developed and refined our siting model is transferrable and can be applied to address other siting problems.

Feelings of distance and proximity: exploring the emotional geographies of men caregiving for family members with multiple chronic conditions

Abstract Care exchanges are imbued with emotion, yet few geography of caregiving researchers have explored how emotions shape such experiences. Furthermore, the emotions of caregiver men have been largely overlooked. As such, this secondary analysis aims to geographically explore the emotion discourse of a diverse group of men caregiving for family members with multiple chronic conditions. Drawing on semi-structured interviews with nineteen men caregivers in Canada, our thematic findings reveal that the men’s discourse portrayed emotions experienced relationally at three levels: Between the caregivers and their own selves, others and the wider community. It was also found that the men commonly expressed their emotional experiences using geographic notions of distance (e.g. feeling far, isolated) and proximity (e.g. feeling close, connected) and that these emotions were further complicated by the participants’ diversity or situated ‘place-in-the-world’. Overall, our findings demonstrate the importance of emotional geographies in caregiver men’s lived realities and how they move between distance and proximity in order to manage their emotions as caregivers. By considering caregiver diversity and the role emotions play in shaping caregiver experiences, programs, services and best practice can become better informed on ways to enhance the provision of more context sensitive and equitable caregiver support.