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.

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.

Mothering Without a Home: Internalized Impacts of Social Exclusion.

Mothering while homeless poses significant barriers in achieving health and unique challenges while parenting without a home. The contextual processes shaping mothers' experiences of social exclusion and homelessness, and the internalized impacts on homeless mothers' lives, are reported on in this article. Critical narrative methodology was employed with 41 participants comprised of 26 mothers experiencing homelessness, and 15 service providers who provided care to mothers experiencing homelessness participated in this study. Two overarching themes were constructed: (1) internalized expectations and regulation and (2) pushing back from the margins: sources of resilience and resistance. Women showed a great deal of agency within the existing structures of exclusion; they worked, and at times fought, tirelessly for safety, housing, their children, and their human rights. They actively demonstrated their agency and resistance within the webs of exclusion they faced. In promoting health, nurses can best support mothers in many ways, such as by employing strengths-based nursing, challenging their own stigma and notions of 'good mothering', and by recognizing and challenging the often insurmountable barriers posed within the system for this population.

Client or Volunteer? Understanding Neoliberalism and Neocolonialism Within International Volunteer Health Work.

As international volunteer health work increases globally, research pertaining to the social organizations that coordinate the volunteer experience in the Global South has severely lagged. The purpose of this ethnographic study was to critically examine the social organizations within Canadian NGOs in the provision of health work in Tanzania. Multiple, concurrent data collection methods, including text analysis, participant observation and in-depth interviews were utilized. Data collection occurred in Tanzania and Canada. Neoliberalism and neocolonialism were pervasive in international volunteer health work. In this study, the social relations-"volunteer as client," "experience as commodity," and "free market evaluation"-coordinated the volunteer experience, whereby the volunteers became "the client" over the local community and resulting in an asymmetrical relationship. These findings illuminate the need to generate additional awareness and response related to social inequities embedded in international volunteer health work.

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.

Evaluating dementia home care practices: The reification of care norms.

This critical ethnographic study examined how power relations shape the nature and enactment of caregivers' evaluation of home-based dementia care practices. As the home care sector continues to evolve and prepare itself as a key element in caring for people living with dementia and their families, this study grounds our understanding of how dementia home care practices are enacted and evaluated, particularly at the interface of formal and familial caregiving. The critical finding from our data is that not all evaluations of care practices were considered equally meaningful or relevant, and, moreover, their significance depended on whether the evaluation was made by someone in a position of power. Renewed awareness of and attention to power relations, such as class and gender, are implicated in the evaluation of care practices. Consequently, challenging how power is enacted in ways that (re)produces and reifies care norms is vital in order to foster equitable and supportive partnerships in home-based dementia 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.

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.

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.

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.

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.

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.

Professionalizing familial care: examining nurses' unpaid family care work.

An emergent grounded theory was used to examine Professionalizing Familial Care, the processes by which registered nurses enact professional care work within the familial care domain. A sample of registered nurses (n = 32) were interviewed by telephone at multiple time points over a 6- to 12-month period. The findings revealed that the professionalization of care work was often reinforced by societal, familial, and self-expectations. Setting Limits and Making Connections were the dialectical overarching processes shaping the professionalizing of care while 6 interdependent substrategies emerged: assessing, advising, advocating, collaborating, coordinating, and consulting. These findings will help inform refinement of policies and practices for nurses who provide care for an older relative.

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.

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.

Making care decisions in home-based dementia care: why context matters.

The hours of unpaid elder care by family members are projected to triple by 2038. Because living with dementia can inhibit decision-making abilities, family members are often besought to assist in this process. In this ethnographic study, relationships within home-based dementia care were critically examined through face-to-face interviews and participant observations with clients, family caregivers, and home care providers (n = 51). The findings revealed how the formalized home care system contextually imposes decisions, and revealed three themes: (1) accommodating clinically defined competence/incompetence, (2) making untimely decisions, and (3) reinforcing exclusion in decision making. These themes shed light on how cultural values (competency), beliefs (immutability of the system), and practices (timing of decisions) of the home care system are ultimately deterministic in decision making for persons with dementia and caregivers. Additional attention to the collaborative and inclusive practices of all family members in dementia home care is imperative in order to optimize health.

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.