Making space at the table: Engaging participation of people with dementia in community development.

OBJECTIVES: The Building Capacity Project is an asset-based community development initiative that aims to reduce stigma and promote social inclusion for people with dementia. Using a community-based participatory approach, we conducted research to examine the relational patterns and participatory practices within and across project sites in two different regions of Canada (Vancouver and Thunder Bay). METHODS: Five focus groups and five individual interviews were conducted with team members and community partners (n = 29) and analysed for themes. RESULTS: The overarching theme of Making Space at the Table explains how the participation of people with dementia has served both as a value and a practice shaping the relational work throughout the project. Three sub-themes include: Maintaining a common foundation; Creating communication pathways; and Fostering personal connections. CONCLUSIONS: Together, these findings show how community development can support the meaningful participation of people with dementia in their communities through processes of collaboration that focus on individual and collective strengths, that allow time for the work to unfold, and for building relationships that foster trust and respect for diversity.

Structures, tensions, and processes shaping long-term care home staff's role in end of life decision-making for residents with dementia.

Although long-term care (LTC) home staff of nurses and personal support workers spend the most time providing direct care, their role in end of life decision-making for residents with dementia has largely been unacknowledged. Staff's perceptions of their role play a significant part in how they support people with dementia and family care partners. The purpose of this study was to examine LTC home staff's perspectives of their role in end of life decision-making for LTC home residents with dementia. For this interpretive descriptive study, 21 semi-structured interviews were conducted in two urban LTC homes with nine personal support worker (PSWs), eight registered practical nurses (RPNs), and four registered nurses (RNs). Additionally, a focus group was conducted, consisting of each a PSW, RPN, and RN. A voice-centred relational analysis was used to situate LTC home staff's perspectives within broader social contexts. Findings suggest that little has changed in LTC homes in the last 50 years. Rooted in dichotomies between medical and social care paradigms, ideologies of rationality and professionalism created tensions, hierarchical roles, and staff's minimal involvement in decision-making. A relational approach is needed to account for the interdependency of care and the relationships that LTC home staff have with residents, family care partners, and the sociopolitical environment.

Unpacking the hidden curriculum in nursing education: clinical placements abroad.

Many Canadian nursing programs endorse clinical placements abroad. We critically examined the hidden curriculum embedded in clinical placements seeking to provide a 'global' experience. Using purposeful sampling, we interviewed a total of 18 participants, including eight faculty, eight students and two placement coordinators. Data were analyzed using initial and focused coding, supported by NVivo. After generating themes from the coded data, we adapted Hafferty's (1998) framework to further analyze the theme of the hidden curriculum. The findings illuminate how policies sustained international experience as a privileged endeavour, with restricted access based on grades. Placements incorporated little evaluation of benefits for local communities. Few resources were allocated to students for such placements, as many students paid for their placement. The institutional terms 'international and global experience' denoted interactions with cultural "Others". We recommend that nursing programs attend to hidden practices that sustain clinical placements abroad as prestigious, commodified experiences.

Barriers to Staff Involvement in End-of-Life Decision-Making for Long-Term Care Residents with Dementia.

ABSTRACTAlthough providing direct care to residents with dementia, long-term care (LTC) home staff of registered nurses', registered practical nurses', and personal support workers' involvement in end-of-life decision-making is rarely acknowledged. The purpose of this study was to examine barriers and facilitators to LTC home staff involvement in end-of-life decision-making for people with advanced dementia. We report on the barriers to staff involvement in decision-making. Using an interpretive descriptive design, four major barriers to staff involvement in decision-making were identified: (a) the predominance of a biomedical model of care; (b) a varied understanding of a palliative approach; (c) challenging relationships with families; and (d) a discomfort with discussing death. Findings suggest that the predominant biomedical model in LTC homes, while important, must be imbued with a philosophy that emphasizes relationships among residents with dementia, family and staff.

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.

Three Values That Should Underlie Community-Based Dementia Care Strategies.

To guide action towards a community-based dementia care strategy, Morton-Chang et al. provide the following three key strategic pillars: putting people with dementia first, supporting informal caregivers and enabling local communities to support people with dementia. While, in principle we agree with these pillars, the ways in which we interpret and implement them differ. We propose three values that should underlie any discussion of dementia policy, strategy and change and that place people with dementia at the heart of these discussions: that of the rights of people with dementia, of diversity and equity, and inclusion.

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.

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.

The meaning of being in transition to end-of-life care for female partners of spouses with cancer.

OBJECTIVE: Female partners of cancer patients are at high risk for psychological distress. However, the majority of studies have focused on measurement of female partners' psychological distress during diagnosis and early treatment. There is a gap in the literature with regard to qualitative studies that examine the experiences of female partners of spouses with cancer during the transition to end-of-life care. The purpose of this qualitative study was to explore the meaning of being in transition to end-of-life care among female partners of spouses with cancer. METHODS: An interpretive phenomenological approach based on Gadamer's (1960/1975) philosophy was used to gain a deeper understanding of the phenomenon of end-of-life transition. Eight female partners from two in-patient hospices and a community-based palliative care service were interviewed using a semistructured approach. RESULTS: Three major themes and associated subthemes were identified that outlined female partners' experiences. One major theme, Meaning of Our Lives, included the subthemes Our Relationship, Significance of His Life, and Searching for Understanding. In another theme, Dying with Cancer, partners undertook the Burden of Caring, experienced an Uncertain Path and were Looking for Hope. In the last theme, Glimpses of the Future, participants Faced Tomorrow and confirmed their Capacity to Survive. SIGNIFICANCE OF RESULTS: The results centered on three major concepts: meaning making, anticipatory mourning, and hope. Although meaning making has been identified as a fundamental way in which bereaved individuals cope with loss, results of this study suggested that female partners made meaning of their situations before their spouses' deaths. Participants also spontaneously described aspects of anticipatory mourning, thus, validating a concept that has been widely accepted despite limited research. Another finding was that participants shouldered the responsibility of adjusting spouses' hopes in order to help them to cope. Implications for practice and research are drawn from these findings.