Discourses Reproducing Gender Inequities in Hospice Palliative Home Care.

BACKGROUND: As home is a site where gendered attitudes, beliefs, and practices are reproduced, it is imperative that policies and practices promote gender equity in end-of-life care at home. PURPOSE: The purpose of this study was to critically analyze gender relations in the sociopolitical context of hospice palliative home care. METHODS: Using a critical feminist perspective, we examined gender relations between and among clients with cancer, their family caregivers, and nurses in hospice palliative home care. Ethnographic methods of in-depth interviews (n = 25), observations of home visits (n = 9), and review of documents (n = 12) were employed to expose gender (in)equities. FINDINGS: This critical analysis sheds light on institutional discourses that reproduce gender inequities: discourses of difference and denial; discourses of individuality, autonomy, and choice; and discourses of efficiency, objectivity, and rationality. Although gender was discounted, these neoliberal discourses reinforced traditional gender relations. DISCUSSION: Neoliberal discourses frame health and health-care experiences as resulting primarily from individual behaviors and biomedical factors, permitting health-care providers and policy makers to overlook power relations and the sociopolitical forces that obscure gender inequities. A critical perspective is needed to consider how social structures significantly shape everyday gendered experiences in hospice palliative home care.

Structural impact on gendered expectations and exemptions for family caregivers in hospice palliative home care.

Evidence of gender differences in the amount and type of care provided by family caregivers in hospice palliative home care suggests potential inequities in health and health care experiences. As part of a larger critical ethnographic study examining gender relations among clients with cancer, their family caregivers and primary nurses, this article describes gendered expectations and exemptions for family caregivers within the sociopolitical context of end-of-life at home. Data were collected from in-depth interviews (n = 25), observations of agency home care visits (n = 9) and analyses of policy and home care agency documents (n = 12). Employing a critical feminist lens, a gender-based analysis revealed that structural discourses emphasizing an artificial divide between public and private spheres constructed end-of-life at home as private and apolitical. Associated with care of home and family, women were most impacted by these public/private discourses underpinning neoliberal values of cost-efficiency. Findings suggest that a critical perspective is needed to assist policy makers and healthcare providers to view how caregiver experiences are shaped by structures that control the availability of resources. Thus, instead of focusing on caregivers' deficits, interventions should be directed at the social, political and economic conditions that shape gendered experiences.

Gendered Processes in Hospice Palliative Home Care for Seniors With Cancer and Their Family Caregivers.

There has been limited investigation into the processes that shape gender (in)equities in hospice palliative home care. As part of a larger critical ethnographic study, we examined how and why gender relations occur in this context. Using a critical feminist lens, we conducted in-depth interviews with clients living with terminal cancer, their family caregivers and primary nurses; observations of agency home visits; and review of institutional documents. A gender-based analysis revealed that gender enactments of Regulating Gender Relations were legitimized through ideological processes of Normalizing Gender Relations and Equalizing Gender Relations (Re)produced through institutional discourses of individualism and egalitarianism, these gendered processes both advantaged and disadvantaged men and women in hospice palliative home care. Findings suggest that to promote equity, health care providers and policy makers must attend to gender as a prevalent social determinant of health and health care. Implications for policy, practice, education, and research are discussed.

Ontario's Poverty Reduction Strategy: A Critical Discourse Analysis.

This article overviews the second phase of a two-phase study which examined experiences of health and social exclusion among mothers experiencing homelessness in Ontario, Canada. A critical discourse analysis was employed to analyze the policy document, Realizing Our Potential: Ontario's Poverty Reduction Strategy, 2014-2019. In nursing, analysis of policy is an emerging form of scholarship, one that draws attention to the macro levels influencing health and health promotion, such as the social determinants of health, and the policies that impact them. The clear neo-liberal underpinnings, within the strategy, with a focus on productivity and labor market participation leave little room for an understanding of poverty reduction from a human rights perspective. Further, gender-neutrality rendered the poverty experienced by women, and mothers, invisible. Notably, there were a lack of deadlines, target dates, and thorough action and evaluation plans. Such absence troubles whether poverty reduction is truly a priority for the government, and society as a whole.

Creating an Ethnodrama to Catalyze Dialogue in Home-Based Dementia Care.

This article describes the development of a theater script derived from a critical ethnographic study that followed people living with dementia--and their family and professional caregivers--over an 18-month period. Analysis of the ethnographic data yielded four themes that characterized home-based dementia care relationships: managing care resources, making care decisions, evaluating care practices, and reifying care norms. The research team expanded to include a colleague with playwright experience, who used these themes to write a script. A theater director was included to cast and direct the play, and finally, a videography company filmed the actors on a realistic set. To contribute to the qualitative health research and the research-based theater knowledge translation literatures, this article describes and explains the creative decisions taken as part of our effort to disseminate research focused on home-based dementia care in a way that catalyzes and fosters critical (actionable) dialogue.

Social Exclusion and Health: The Development of Nursing Knowledge.

The concept of social exclusion has been proposed as an important social determinant of health. However, use of the concept in health and health promotion research is in its infancy. In nursing discourse, in particular, exploration and application of the concept of social exclusion is minimal. The purpose of this article is to explore the relevance of the concept of social exclusion in the development of nursing knowledge. Current knowledge regarding social exclusion is examined and its use in health-related research is explored. To conclude, a conceptualization of social exclusion for the development of nursing knowledge is proposed.

Il a été proposé que le concept d'exclusion sociale soit considéré comme un important déterminant social de la santé. Cependant, le recours à ce concept dans la recherche en santé et en promotion de la santé en est encore à ses balbutiements. Dans le discours des sciences infirmières en particulier, l'étude et l'application du concept d'exclusion sociale sont toujours minimes. L'objectif du présent article est d'explorer la pertinence du concept d'exclusion sociale dans le développement du savoir en sciences infirmières. Les auteures y examinent les connaissances actuelles relatives à l'exclusion sociale et leur utilisation dans la recherche liée à la santé. L'article propose en conclusion une conceptualisation de l'exclusion sociale adaptée au développement des connaissances en sciences infirmières.

Nurses negotiating professional-familial care boundaries: striving for balance within double duty caregiving.

The purpose of this sequential, two-phase mixed-methods study was to examine the health of male and female nurses who provided care to older relatives (i.e., double duty caregivers). We explored the experiences of 32 double duty caregivers, which led to the development of an emergent grounded theory, Negotiating Professional-Familial Care Boundaries with two broad dialectical processes: professionalizing familial care and striving for balance. This article examines striving for balance, which is the process that responds to familial care expectations in the midst of available resources and reflects the health experiences of double duty caregivers. Two subprocesses of striving for balance, reaping the benefits and taking a toll, are presented in three composite vignettes, each representing specific double duty caregiving (DDC) prototypes (making it work, working to manage, living on the edge). This emergent theory extends current thinking of family caregiving that will inform the development and refinement of practices and policies relevant to DDC.

Double-Duty Carers' Health and Wellbeing during COVID-19: Exploring the Role of Mobility of the Care Economy in Southern Ontario, Canada.

Double-Duty Carers (DDCs) refer to people who work in the healthcare industry while also providing unpaid care to relatives, friends, or neighbours. The expectations placed on DDCs is expected to grow, and these employees already experience a high caring burden. As such it is important to understand how best to support their health and wellbeing. This paper explores DDCs' wellbeing during the COVID-19 pandemic, focusing an understudied factor: their mobility constraints. Following the Mobility of the Care Economy framework and a qualitative research design, it does so through a thematic analysis of 16 semi-structured interviews with female DDCs in Southern Ontario, Canada. Once data saturation was reached, three mobility pathways during the pandemic were identified, all of which negatively affected DDCs wellbeing. First, some COVID-19 policies (e.g., testing requirements) resulted in increased mobility demands and increased spatiotemporal constraints. Second, the closure of institutions that care for dependents (schools, daycares, day centres) resulted in forced reduced mobility, which increased financial stress. Finally, indirect mobility effects were identified: the reduced mobility of other informal carers increased the workload and emotional strain on DDCs. The paper concludes with a discussion of mobility-related policies that could improve DDC wellbeing.

Double-duty caregivers enduring COVID-19 pandemic to endemic: "It's just wearing me down".

The COVID-19 pandemic has considerably strained health care providers and family caregivers. Double-duty caregivers give unpaid care at home and are employed as care providers. This sequential mixed-method study, a survey followed by qualitative interviews, aimed to comprehensively understand the experiences of these Canadian double-duty caregivers amidst the pandemic and the transition to the endemic phase. The multi-section survey included standardized assessments such as the Double-duty Caregiver Scale and the State Anxiety Scale, along with demographic, employment-related, and care work questions. Data analysis employed descriptive and linear regression modeling statistics, and content analysis of the qualitative data. Out of the 415 respondents, the majority were female (92.5%) and married (77.3%), with 54.9% aged 35 to 54 years and 29.2% 55 to 64 years. 68.9% reported mental health decline over the past year, while 60.7% noted physical health deteriorated. 75.9% of participants self-rated their anxiety as moderate to high. The final regression model explained 36.8% of the variance in participants' anxiety levels. Factors contributing to lower anxiety included more personal supports, awareness of limits, younger age, and fewer weekly employment hours. Increased anxiety was linked to poorer self-rated health, and both perceptions and consequences of blurred boundaries. The eighteen interviewees highlighted the stress of managing additional work and home care during the pandemic. They highlighted the difficulty navigating systems and coordinating care. Double-duty caregivers form a significant portion of the healthcare workforce. Despite the spotlight on care and caregiving during the COVID-19 pandemic, the vital contributions and well-being of double-duty caregivers and family caregivers have remained unnoticed. Prioritizing their welfare is crucial for health systems as they make up the largest care workforce, particularly evident during the ongoing healthcare workforce shortage.

Client-provider relationships in a community health clinic for people who are experiencing homelessness.

Recognizing the importance of health-promoting relationships in engaging people who are experiencing homelessness in care, most research on health clinics for homeless persons has involved some recognition of client-provider relationships. However, what has been lacking is the inclusion of a critical analysis of the policy context in which relationships are enacted. In this paper, we question how client-provider relationships are enacted within the culture of community care with people who are experiencing homelessness and how clinic-level and broader social and health policies shape relationships in this context. We explore these questions within a critical theoretical perspective utilizing a critical ethnographic methodology. Data were collected using multiple methods of document review, participant observation, in-depth interviews and focus groups. The participants include both clients at a community health clinic, and all clinic service providers. We explore how clients and providers characterized each other as 'good' or 'bad'. For providers, this served as a means by which they policed behaviours and enforced social norms. The means by which both providers' and clients' negotiated relationships are explored, but this is couched within both local and system-level policies. This study highlights the importance of healthcare providers and clients being involved in broader policy and systemic change.

Community health promotion with people who are experiencing homelessness.

Homelessness is an experience of being displaced. Once removed from their personal places, homeless people are barred access to healthy places in which to be. Health clinics for people who are experiencing homelessness offer an opportunity to create health-promoting places. In this study, we explore how place is experienced within a community health clinic for people who are experiencing homelessness. A critical ethnographic methodology was used. Results illustrate how clients and providers contested the space of the clinic. Discourses of safety, health promotion, and privacy were enacted, altered, and resisted in a constant practice of culture-making. Physical components of the space became conceptual components of how place and power in place were understood by clients and providers. Results point to the importance of conceptualizing service users as the key stakeholders in their care, considering how places may be more or less health promoting, and rethinking how safety is conceptualized.

Social Isolation of Older Adults, Family, and Formal Caregivers During the COVID-19 Pandemic: Stories and Solutions Through Participatory Action Research.

This participatory action research (PAR) aimed to understand the health implications of guidelines impacting social isolation among frail community-dwelling older adults and their family and formal caregivers during the coronavirus disease (COVID-19) pandemic. Reflexive thematic analysis (RTA) of data collected from 10 policy/procedural documents revealed four themes: valuing principles, identifying problem(s), setting priorities, and making recommendations. Interviews with 31 participants from Peterborough, Ontario, also revealed four themes: sacrificing social health, diminishing physical health, draining mental health, and defining supports. Recommendations to decision makers were finalized at a knowledge exchange event involving participants and members of Age-friendly Peterborough. Key findings demonstrate the need for Canadian governments and health and social service agencies to enhance access to technology-based interventions, and educational and financial resources for caregivers. Meaningful communication and collaboration between older adults, caregivers, and decision makers are also needed to reduce the gap between policy and practice when addressing social isolation.

Negotiating relational practice patterns in palliative home care.

Providing palliative care in the home presents a variety of challenges for nurses and other care providers. As part of a focused ethnographic study examining client/caregiver/care-provider relationships within the socio-cultural context of home-based palliative care, this paper describes the provision of palliative care to Canadian seniors with advanced cancer from the perspective of nurses. Data were collected through in-depth interviews (n=19) with three palliative care nurses and participant observations in four households over a six-to-eight-month period. Home-based palliative care nursing was depicted in this study as a dialectical experience, revealing three relational practice patterns: making time-forfeiting time, connecting-withdrawing, and enabling-disabling. Nurses attempted to negotiate the tensions between these opposing approaches to palliative care. Study findings suggest that the sociocultural context of palliative care is not conducive to high-quality palliative care and provide several insights related to future directions for practice, policy, and research.

Understanding gendered expectations and exemptions experienced by male double-duty caregivers: a qualitative secondary analysis.

There is growing evidence that family caregivers who are also employed face challenges in balancing the multiple demands associated with family caregiving. Health professionals who are family caregivers, defined in this study as double-duty caregivers (DDCs), are expected to use their professional knowledge in the provision of family care. The purpose of this qualitative secondary analysis was to explore how gendered expectations and exemptions affect the caregiving experiences and personal health of male nurses caring for family members. Being a male DDC created intersecting gendered expectations and exemptions. These coexisting and at times conflicting expectations and exemptions, constituted by the overarching theme of the determinants of care, directly influenced the health of male DDCs as they experienced tension when negotiating their dual role. The findings have direct implications for health-care policy and practice, research, and theory development.

Relational experiences of family caregivers providing home-based end-of-life care.

The multiple relationships involved in home-based end-of-life care have received little systematic analysis. As part of a focused ethnographic study examining client-caregiver-provider relational care experiences within the sociocultural context of home-based end-of-life care, this article describes the provision of end-of-life care to older adults with advanced cancer from the perspective of family caregivers. Data were collected through in-depth interviews (n = 16) with 4 family caregivers and participant observations in each of the 4 households over a 6- to 8-month period. Family caregiving in home-based end-of-life care was portrayed in this study as 3 dialectical relational care experiences: (1) prioritizing care recipient needs-ignoring own needs, (2) feeling connected-feeling isolated, and (3) juggling to manage-struggling to survive. Study findings suggest that the sociocultural context of end-of-life care is not conducive to quality care and provide several insights for future directions in nursing practice, policy, and research.

Care transition experiences of spousal caregivers: from a geriatric rehabilitation unit to home.

The purpose of this study was to develop a theoretical framework about caregivers' experiences and the processes in which they engaged during their spouses' transition from a geriatric rehabilitation unit to home. We used a constructivist grounded theory methodology approach. Forty-five interviews were conducted across three points in time with 18 older adult spousal caregivers. A theoretical framework was developed within which reconciling in response to fluctuating needs emerged as the basic social process. Reconciling included three subprocesses (i.e., navigating, safekeeping, and repositioning), and highlighted how caregivers responded to the fluctuating needs of their spouse, to their own needs, and to those of the marital dyad. Reconciling was situated within a context shaped by a trajectory of prior care transitions and intertwined life events experienced by caregivers. Findings serve as a resource for scientists, rehabilitation clinicians, educators, and decision makers toward improving transitional care for spousal caregivers.

Compassion fatigue within double duty caregiving: nurse-daughters caring for elderly parents.

This article examines compassion fatigue within double duty caregiving, defined here as the provision of care to elderly relatives by practicing nurses. Using qualitative data from our two studies of Canadian double duty caregivers, we identified and interviewed 20 female registered nurses whom we described as "living on the edge." The themes of context, characteristics, and consequences emerged from the findings. In this article, we argue that being both a nurse and a daughter leads to the blurring of boundaries between professional and personal care work, which ultimately predisposed these caregivers to compassion fatigue. We found that the context of double duty caregiving, specifically the lack of personal and professional resources along with increasing familial care expectations, shaped the development of compassion fatigue. Nurse-daughters caring for elderly parents under intense and prolonged conditions exhibited certain characteristics, such as being preoccupied and absorbed with their parents' health needs. The continual negotiation between professional and personal care work, and subsequent erosion of those boundaries, led to adverse health consequences experienced by the nurse-daughters. The study findings point to the need to move beyond the individualistic conceptualization and medical treatment of compassion fatigue to one that recognizes the inherent socio-economic and political contextual factors associated with compassion fatigue. Advocating for practice and policy changes at the societal level is needed to decrease compassion fatigue amongst double duty caregivers. In this article we review the compassion fatigue literature, report our most recent study methods and findings, and discuss our conclusions.

Gaining ground, losing ground: the paradoxes of rural homelessness.

The study examined rural housing and homelessness issues and looked at similarities and differences between rural and urban areas. It involved a secondary analysis of focus group data collected in a 2001-06 Community University Research Alliance study of mental health and housing. The findings highlight concerns regarding the lack of services, which can precipitate a move from a rural to an urban community. Inadequate transportation services often posed a challenge to rural residents attempting to access services. Many participants preferred rural living but felt they had to choose between residing where they wanted to and having access to essential services. In some cases entire families were uprooted in pursuit of services. Once in an urban environment, rural participants had ongoing difficulty obtaining employment, housing, and services, which in turn led to disappointment in their new environment. The primary reason given for entering the shelter system was lack of alternatives and supports. Increased services need to be allocated to rural communities so that a health promotion and illness-prevention model of care can replace the current emphasis on crisis management.

Working it out together: family caregivers' perceptions of relationship-building with in-home service providers.

Provision of in-home services to seniors involves the contributions of numerous professional and paraprofessional health-care providers but is largely dependent upon the involvement of caregiver networks consisting of friends and family members. Therefore, in-home provider/family caregiver relationships have become an essential component of care provision. However, evidence suggests that provider/family caregiver interactions often are lacking or are ambiguous and characterized by tension and power struggles.The purpose of this study was to explore family caregivers' perceptions of their relationships with in-home care providers. Applying interpretive phenomenology, the authors conducted in-depth interviews with a purposive sample of family caregivers and used an immersion/crystallization analysis strategy to elicit the findings. The findings reveal that family caregivers perceive their relationship-building with in-home providers as a dynamic process with facilitators and barriers encountered at both individual and system levels.The interpretive findings afford several insights into building provider/family caregiver relationships within the in-home context.

Development and validation of the double duty caregiving scale.

In order to gain an understanding of double duty caregiving (DDC), defined here as the provision of care to elderly relatives by practising health professionals, a DDC scale has been developed. This study tests the psychometric properties of the scale. Survey data were collected from a random sample of 187 female registered nurses who were employed and also provided care to elderly relatives. Nine factors contributing to DDC emerged from exploratory factor analysis. The DDC subscales were moderately correlated with the standardized health measures included in the study.The caregiving interface (degree of blurring between the professional and personal caregiving domains) was significantly negatively correlated with well-being and mental health.This result extends our understanding of the supports needed by those providing DDC.