•Many canadians rely on long-term care (LTC) in their later years.•Family caregivers were prevented from accessing LTC during the pandemic.•This further eroded public trust in the long-term care ...sector.•Several well-known social psychological phenomena contributed to this situation.•Trust must be rebuilt through enquiry and collaboration with canadian families.
Family caregivers in Canadian long-term care homes are estimated to provide 10 h per week of direct care to approximately 30% of residents through roles including mobility support, mealtime assistance, personal care, social interaction, psychological care, care coordination, and advocacy. Despite these contributions, they continue to be viewed as visitors rather than as key participants in the interdependent relationships that support the long-term care sector. Their marginalization was evident during the COVID-19 pandemic, as Canadian public health policy focused on preventing them from entering long-term care, rather than supporting personal risk management, symptom screening, personal protective equipment, and other mechanisms for safe involvement in care. Several iatrogenic resident outcomes have been attributed to this, including decreased cognitive function, decreased mobility, increased incontinence, weight loss, increased depression and anxiety, increased responsive behaviours amongst those living with dementia, and increased delirium. In this commentary article, we argue that family caregiver presence was conflated as a risk when instead, it contributed to unintended harm. We identify nine well-known human social cognitive predispositions that may have contributed to this. We then examine their implications for trust in long-term care, and consider how quality and safety can be further fostered in long-term care by working in partnership with family caregivers to rebuild trust through enquiry and collaboration. We advocate incorporating trust as an essential measure of quality health service.
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GEOZS, IJS, IMTLJ, KILJ, KISLJ, NLZOH, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UILJ, UL, UM, UPCLJ, UPUK, ZAGLJ, ZRSKP
Current discourse in research that examines end-of-life (EOL) care for people with advanced dementia is predominated by biomedicine that constructs a storyline of an experience dominated by the ...decline of the body. However, the focus on the dying body obscures the social, emotional, and spiritual elements of the dying experience. If we accept that the EOL is more than an experience of a deteriorating body, then research must take a holistic perspective and offer a counter narrative that attends to the depth of human experience.
This paper presents findings from ethnographic case study research exploring how care staff and family understood the needs and experiences of women with advanced dementia nearing the EOL. In-depth interviews with 23 care staff (nursing, management and allied health) and 2 family members, over 600 hours of participant observation, and 30 hours of video observation were conducted in one nursing home. Informed by a dialogical perspective, thematic and narrative analyses revealed that while family and staff’s reflections were undergirded by a storyline of deterioration, their narratives were dominated by an ethical obligation towards the residents that went beyond fulfilling instrumental tasks and caring for the dying body. Rather, analysis showed that (1) encountering and acknowledging the residents’ personhood, (2) nurturing relationship, (3) negotiating contextual factors, and (4) acting out of love and compassion were central to provide responsive person-centred EOL care. Findings suggest that staff and family have a nuanced understanding of EOL care, which has important implications for practice and education of care providers.
The objective of this research is to examine clinical (e.g., older adult’s physical wellbeing) and system-level (e.g., use of community-based services) outcomes related to older adults’ transition ...from RLTC back to the community. This study is a longitudinal design and uses data from the RAI MDS 2.0 from a cohort of older adults residing in RLTC in one health region in British Columbia, Canada.
The purpose of this presentation is to report findings on the application of an algorithm designed to identify older RLTC residents who might be candidates for a transition back to the community. The algorithm was evaluated on a cohort of older adults who had been discharged from RLTC (N=3,859) between the years 2010 and 2014. A small percentage of these residents (n = 102) had been transitioned back to the community, whereas non-transitioning residents (n = 3,757) either moved to another RLTC or died. Statistically significant differences were observed across several variables; compared to non-transitioners, transitioners were younger, had been in RLTC for shorter durations, and were more likely to express a preference to return to the community and to have a support person who was positive about the transition. An ROC analysis of the algorithm disclosed a significant area under the curve (
c
= .767,
p
< .001).
These findings suggest that a small portion of older adults could transition back to the community. This has important implications for the development of policies that ensure appropriate and accessible health services in the community.
The purpose of this study was to describe policies developed by English-speaking Canadian health authorities to guide multi-disciplinary healthcare practice in the context of MAID. Seventeen policies ...from 9 provinces and 3 territories were identified and analyzed thematically. Themes developed from these documents related to ensuring a team approach to care, supporting informed patient choice, creating region-specific guidance on eligibility criteria and safeguards, accommodating conscientious objection, and making explicit organizational responsibilities. Ethical language concerned vulnerability, non-judgmental care, dignity, non-abandonment, confidentiality, moral conscience, and diverse cultural values. Overall, these policies addressed important risk mitigation strategies, acknowledged important social contracts, and supported ethical practice. Collectively, these policies outline important considerations in the evolving Canadian context for other jurisdictions seeking to create policy around assisted death.
Current long-term residential care (LTRC) policy emphasizes the need for collaborative, team-based care planning that actively involves families and/or residents. Resident care conferences are one of ...the more common ways in which care providers, families and/or residents come together to discuss and coordinate resident care needs and evaluate care goals. To date, research in this area has focused on evaluating conference outcomes (e.g., improved end-of-life care); far less is known about the care conference process such as how care is negotiated and how care decisions are made. Drawing on data from a critical ethnography examining the negotiation of care work among families and staff in three LTRC facilities in British Columbia, Canada, this presentation explores the process, structure and content of care conferences. Thirty-seven care conferences were observed and informal conversations held with families and staff following the conference. Additional information came from interview data from the larger study (n=37 family, 35 care staff). Grounded in critical theory, thematic analyses identified two key themes, Following Script and Devaluing Knowledge. Following Script reveals how the conference agenda and ensuing discussion was a tightly-controlled, homogenized process, in which opportunity for meaningful input from families was severely curtailed. Devaluing Knowledge outlines how adherence to script and clinical ways of knowing subjugated family members’ knowledge of residents’ needs and care goals, again limiting family contributions. A series of practice recommendations outline how to engage and empower families as active participants in care conference decision-making and planning.
Responsive behaviours between residents (RBBR) are negative and aggressive physical, sexual, or verbal interactions that occur between some older adults living in Residential Long-Term Care (RLTC). ...Despite the growing understanding of RBBR, to date research has focused on residents and staff, yet, families, many of whom spend a significant amount of time on-site, have largely been excluded from this research.
The purpose of this presentation is to describe family members’ perspectives on responsive behaviours between residents in RLTC. The methodology for the study was critical ethnography comprising semi-structured interviews with 12 family members and over 100 hours of participant observations. A thematic analysis was undertaken using constant comparative methods. Under the over-arching theme of
Negotiating Safety,
family members discussed activities
Promoting Safety
of themselves and the safety of residents. However,
Role Ambiguity
impacted family members’ actions in relation to witnessed events of responsive behaviours between residents.
Contextual Features
such as the physical environment and organizational context (e.g., staffing levels) contributed to how safety was perceived and negotiated. These findings highlight family members’ perspectives of safety based on experiences of their relatives’ being victims or perpetrators of RBBR, their witnessing and active attempts to diffuse situations even where their relative was not involved, and the lack of information and disclosure of RBBR by staff. Study findings have important implications for workplace policy and practice, underscoring the integral need for families to be offered education and support around their unavoidable role in managing RBBR.
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