Navigation programs to support community-dwelling individuals with life-limiting illness: determinants of implementation.

BACKGROUND: As the Canadian population ages and the prevalence of chronic illnesses increases, delivering high-quality care to individuals with advanced life limiting illnesses becomes more challenging. Community-based navigation programs are a promising approach to address these challenges, but little is known about how these programs are successfully implemented to meet the needs of this population. This study sought to identify the key determinants that contribute to the successful implementation of these programs within Canada. METHODS: A qualitative study was undertaken to understand the implementation of eleven innovative, community-based navigation programs that aim to address the needs of individuals with life-limiting illnesses as they approach the end of life. The Consolidated Framework for Implementation Research (CFIR) guided the study design. Key informants (n = 23) within these programs took part in semi-structured interviews where they were asked to discuss how these programs are implemented. Data were analyzed using techniques employed in qualitative description. RESULTS: We identified key determinants of successful implementation within each CFIR domain. In the outer setting domain, participants emphasized the importance of filling gaps in care to meet client needs, developing strong relationships with clients and community-based organizations, and navigating relationships with healthcare providers. At the inner setting level, leadership support, staff compatibility, and available resources were identified as important factors. In terms of intervention characteristics, the ability to adapt was cited as a facilitator, whereas costs were identified as a barrier. For the characteristics of individuals, participants described the importance of having staff whose values align with the program, and who have the experience and skills necessary to work with complex clients. Finally, having strong champions and evaluation processes were highlighted as important process-oriented determinants of successful implementation. CONCLUSION: This study provides valuable insights into the determinants of successful implementation of community-based navigation programs in Canada. Understanding these determinants can guide the future development and integration of navigation programs to successfully meet the needs of those with life-limiting illnesses.

Community perspectives on structural barriers to dying well at home in Canada.

OBJECTIVES: To analyze how structural determinants and barriers within social systems shape options for dying well at home in Canada, while also shaping preferences for dying at home. METHODS: To inform a descriptive thematic analysis, 24 Canadian stakeholders were interviewed about their views, experiences, and preferences about dying at home. Participants included compassionate community advocates, palliative care professionals, volunteers, bereaved family caregivers, residents of rural and remote regions, service providers working with structurally vulnerable populations, and members of francophone, immigrant, and 2SLGBTQ+ communities. RESULTS: Analysis of stakeholders' insights and experiences led to the conceptualization of several structural barriers to dying well at home: inaccessible public and community infrastructure and services, a structural gap in death literacy, social stigma and discrimination, and limited access to relational social capital. SIGNIFICANCE OF RESULTS: Aging in Canada, as elsewhere across the globe, has increased demand for palliative care and support, especially in the home. Support for people wishing to die at home is a key public health issue. However, while Canadian policy documents normalize dying in place as ideal, it is uncertain whether these fit with the real possibilities for people nearing the end of life. Our analysis extends existing research on health equity in palliative and end-of-life care beyond a focus on service provision. Results of this analysis identify the need to expand policymakers' structural imaginations about what it means to die well at home in Canada.

How initial policy responses to COVID-19 contributed to shaping dying at home preferences and care provision: key informant perspectives from Canada.

OBJECTIVES: In response to COVID-19's first wave, provincial governments rapidly implemented several public health directives, including isolation measures and care facility visitor restrictions, which profoundly affected healthcare delivery at the end of life and dying experiences and perceptions. The objective of this study was to identify implications of early policy changes for dying at home. METHODS: Analysis of interviews with 29 key informants with expertise in the policy and practice context of dying at home and care for those dying at home was conducted as part of a larger mixed-methods study on dying at home in Canada. RESULTS: Initial pandemic policy responses, especially visitor restrictions and limitations to home care services, shaped dying at home in relation to three themes: (1) increasing preferences and demand for, yet constrained system ability to support dying at home; (2) reinforcing and illuminating systemic reliance on and need for family/friend caregivers and community organizations, while constraining their abilities to help people die at home; and (3) illuminating challenges in developing and implementing policy changes during a pandemic, including equity-related implications. CONCLUSION: This study contributes to broader understanding of the multifaceted impacts of COVID-19 policy responses in various areas within Canadian healthcare systems. Implications for healthcare delivery and policy development include (1) recognizing the role of family/friend caregivers and community organizations in end-of-life care, (2) recognizing health inequities at the end of life, and (3) considering possible changes in future end-of-life preferences and public attitudes about dying at home and responsibility for end-of-life care.

How do navigation programs address the needs of those living in the community with advanced, life-limiting Illness? A realist evaluation of programs in Canada.

BACKGROUND: We sought to identify innovative navigation programs across Canadian jurisdictions that target their services to individuals affected by life-limiting illness and their families, and articulate the principal components of these programs that enable them to address the needs of their clients who are living in the community. METHODS: This realist evaluation used a two-phased approach. First, we conducted a horizon scan of innovative community-based navigation programs across Canadian jurisdictions to identify innovative community-based navigation programs that aim to address the needs of community-dwelling individuals affected by life-limiting illness. Second, we conducted semi-structured interviews with key informants from each of the selected programs. Informants included individuals responsible for managing and delivering the program and decision-makers with responsibility and/or oversight of the program. Analyses proceeded in an iterative manner, consistent with realist evaluation methods. This included iteratively developing and refining Context-Mechanism-Outcome (CMO) configurations, and developing the final program theory. RESULTS: Twenty-seven navigation programs were identified from the horizon scan. Using specific eligibility criteria, 11 programs were selected for subsequent interviews and in-depth examination. Twenty-three participants were interviewed from these programs, which operated in five Canadian provinces. The programs represented a mixture of community (non-profit or volunteer), research-initiated, and health system programs. The final program theory was articulated as: navigation programs can improve client outcomes if they have supported and empowered staff who have the time and flexibility to personalize care to the needs of their clients. CONCLUSIONS: The findings highlight key principles (contexts and mechanisms) that enable navigation programs to develop client relationships, personalize care to client needs, and improve client outcomes. These principles include staff (or volunteer) knowledge and experience to coordinate health and social services, having a point of contact after hours, and providing staff (and volunteers) time and flexibility to develop relationships and respond to individualized client needs. These findings may be used by healthcare organizations - outside of navigation programs - to work towards more person-centred care.

Exploring the impact of community-based choral participation on cognitive function and well-being for persons with dementia: evidence from the Voices in Motion project.

OBJECTIVES: Music-based interventions are postulated to mitigate cognitive decline in individuals with dementia. However, the mechanisms underlying why music-based interventions facilitate cognitive benefits remain unknown. The present study examines whether a choral intervention can modulate patterns of cognitive change in persons with dementia and whether within-person variation in affect is associated with this change. METHODS: Thirty-three older adults with dementia engaged weekly in the Voices in Motion (ViM) study consisting of 3 choral seasons spanning 18-months. Performance on the Mini-Mental State Examination (MMSE) and the Positive and Negative Affect Schedule was assessed monthly within each choral season using a longitudinal intensive repeated-measures design. Three-level multilevel models were employed to disaggregate between- and within-person effects across short- (month-to-month) and long-term (season-to-season) intervals. RESULTS: ViM participants exhibited an annual MMSE decline of 1.8 units, notably less than the clinically meaningful 3.3 units indicated by non-intervention literature. Further, variability in negative affect shared a within-person time-varying association with MMSE performance; decreases in negative affect, relative to one's personal average, were linked to corresponding improvements in cognitive function. CONCLUSION: Engagement in the ViM choral intervention may attenuate cognitive decline for persons with dementia via a reduction of psychological comorbidities such as elevated negative affect.

'Bare-bones' to 'silver linings': lessons on integrating a palliative approach to care in long-term care in Western Canada.

BACKGROUND: 'Whole-person' palliative approaches to care (PAC) are important for enhancing the quality of life of residents with life-limiting conditions in long-term care (LTC). This research is part of a larger, four province study, the 'SALTY (Seniors Adding Life to Years)' project to address quality of care in later life. A Quality Improvement (QI) project to integrate a PAC (PAC-QI) in LTC was implemented in Western Canada in four diverse facilities that varied in terms of ownership, leadership models, bed size and geography. Two palliative 'link nurses' were hired for 1 day a week at each site over a two-year time frame to facilitate a PAC and support education and training. This paper evaluates the challenges with embedding the PAC-QI into LTC, from the perspectives of the direct care, or front-line team members. Sixteen focus groups were undertaken with 80 front-line workers who were predominantly RNs/LPNs (n = 25), or Health Care Aides (HCAs; n = 32). A total of 23 other individuals from the ranks of dieticians, social workers, recreation and rehabilitation therapists and activity coordinators also participated. Each focus group was taped and transcribed and thematically analyzed by research team members to develop and consolidate the findings related to challenges with embedding the PAC. RESULTS: Thematic analyses revealed that front-line workers are deeply committed to providing high quality PAC, but face challenges related to longstanding conditions in LTC notably, staff shortages, and perceived lack of time for providing compassionate care. The environment is also characterized by diverse views on what a PAC is, and when it should be applied. Our research suggests that integrated, holistic and sustainable PAC depends upon access to adequate resources for education, training for front-line care workers, and supportive leadership. CONCLUSIONS: The urgent need for integrated PAC models in LTC has been accentuated by the current COVID-19 pandemic. Consequently, it is more imperative than ever before to move forwards with such models in order to promote quality of care and quality of life for residents and families, and to support job satisfaction for essential care workers.

Cognitive functioning, cognitive reserve, and residential care placement in patients with Alzheimer's and related dementias.

OBJECTIVE: To test the hypothesis that patients with mild to moderate dementia with higher initial cognitive reserve (higher education levels exhibit faster cognitive decline at later stages of disease progression as they approach residential care (RC) placement. METHOD: Two provincial administrative databases were used. One contained individuals' scores of cognitive functioning (assessed at 6- to 12-month intervals using the Standardized Mini-Mental State Examination, SMMSE, 2007-2014) and education level; the second (BC Ministry of Health Home and Community Care database, 2001-2014) contained individuals' RC placement; N = 10531. RESULTS: During 2.5-0.5 years prior to placement, SMMSE scores of patients with 0-8 years of education dropped slightly (M D 20.6 to 20.0), while patients with 9-12 years and 13+ years of education started higher (M D 21.8 and 21.4), but decreased faster and ended up lower (M D 19.5 and 18.8). Six-months prior to placement, SMMSE scores of all groups dropped almost 2 points. CONCLUSIONS: Once cognitive reserve of more highly educated dementia patients is depleted and they approach RC placement, their cognitive functioning deteriorates faster. Finding effective interventions that maintain or enhance cognitive reserve may increase the time in the community for dementia patients.

Social and leisure engagement moderates the association between care partner distress and cognitive status of care recipients with dementia.

OBJECTIVES: Despite the established impact of care recipient cognitive impairment on care partner (CP) distress, limited quantitative research has explored how social and leisure engagement may moderate this relationship, offering a potential avenue for enhancing well-being in both care partners and recipients. The current study therefore examined the between- and within-dyad associations between cognitive impairment of persons with dementia (PwD) and their family CP's distress, and whether social and leisure activity moderated this relationship. METHODS: Data were utilized from dyads (PwD, n = 33, and their CPs, n = 34) engaged in the Voices in Motion project, a social-cognitive choral intervention for PwD and their family CPs. Measures indexing PwD cognitive status, CP distress, and PwD and CP social and leisure engagement were assessed using an intensive repeated-measures burst design, with multilevel models of change employed to disaggregate between- and within-person effects. RESULTS: Diminished cognitive functioning in PwD was associated with increased CP distress (p < 0.01) between-dyads; however, this relationship was not significant within-dyads. The between-dyad association was significantly moderated by the extent of social and leisure engagement of both CPs (p < .001) and PwD (p = .04). Follow-up simple slopes demonstrated that, at mean- and high-levels (+1SD) of social and leisure engagement for PwD and/or CP, increased PwD cognitive function significantly predicted lower CP distress. CONCLUSION: The significant moderating influence of social and leisure engagement of dyads underscores the protective role of such engagement for reducing care-related distress. Activity engagement for CPs and PwD may help modulate the deleterious impact of PwD cognitive impairment and attenuate CP distress. These findings highlight the potential for dyadic interventions that promote social and leisure activities to mitigate caregiving challenges and enhance quality of life for both CPs and PwD.

'The beauty and the less beautiful': exploring the meanings of dying at 'home' among community and practitioner representatives and advocates across Canada.

Background: Significant structural and normative pressures privilege the ideal of dying at home in Canada. At the same time, the social complexities and meanings associated with dying in particular locations remain critically unexamined. Objective: The aim of this study is to explore how diverse community members, including health and social care stakeholders, talk about preferences for locations of dying, with a particular focus on meanings of dying at home. Design: Semi-structured virtual interviews were conducted with 24 community and practitioner representatives and advocates across Canada during the Covid-19 pandemic. This included compassionate community advocates, palliative care professionals and volunteers, bereaved carers, and members of queer, rural, and immigrant communities. Participants were asked about their own preferences for location of dying and elaborated on these aspects with regard to their client population or community group. Results: Our analysis illuminates how meanings of dying at home are connected to previous experiences and perceptions of institutional care. As such, participants' perspectives are often framed as a rejection of institutional care. Dying at home also often signals potential for preserving ontological security and relational connection in the face of life-threatening illness. However, participants' expertise simultaneously informs a sense that dying at home is often unattainable. At times, this awareness underpins interpretations of both preferences and choices as contingent on considerations of the nature and type of illness, concerns about impacts on families, and available resources. Conclusion: The ideal of dying at home is nuanced by identity, relational, and structural contexts. Knowledge from this study can inform realistic and practical person-centered planning across care settings. It can also help create more representative public policy and health system quality indicators regarding a 'good death' that do not rely on or perpetuate undeveloped and unrealistic assumptions about dying, home, and family care.

"We are to be like machines fill the bed before it gets cold": Exploring the emotional geographies of healthcare providers caring for dying residents in long-term care facilities.

The end-of-life context is imbued with emotions, with death and dying transforming everyday places, like long-term care facilities, into entirely new emotional topographies that can evoke profound effects on those who live and work within these settings. Despite their significant role, healthcare providers' emotions and their interconnections with 'place' have received relatively little attention from researchers, including geographers of care and caregiving. This secondary thematic analysis attempts to address this notable gap by exploring the emotional geographies of healthcare providers caring for dying residents in four long-term care facilities in western Canada. By drawing upon interview and focus group data with administrators (n = 12) and direct care provider (n = 80) participants, findings reveal that experiences of caring for dying residents were often charged with negative emotions (e.g., distress, frustration, grief). These emotions were not only influenced by social and physical aspects of 'place', but the temporal process of caring for a dying resident, which included: (1) Identifying a resident as in need of a palliative approach to care; (2) Actively dying; and (3) Following a resident's death. Findings indicate that providers' emotions shifted in scale at each of these temporal phases, ranging from association with the facility as a whole to the micro-scale of the body. Broader structural forces that influence the physical and social place of long-term care facilities were also found to shape experiences of emotional labor among staff. With an increasing number of deaths occurring within long-term care facilities throughout the Global North, such findings contribute critical experiential knowledge that can inform policy and programs on ways to help combat staff burnout, facilitate worker satisfaction, and foster resilience among long-term care providers, ensuring they receive the necessary supports to continue fulfilling this valuable caring role.

Caregiving: predicting at-risk status.

Despite the focus on burden of caregiving in gerontological research, studies have shown that few caregivers are overly burdened. This article compares predictors of role-specific burden and two quality-of-life measures among caregivers experiencing heavy care demands to assess role-impact on each. The study included 92 community-based caregivers on Vancouver Island. Predictors included primary stressors, personal resources, and socio-demographic factors. Demands of caregiving emerged as the most significant correlate of role-specific burden and was important for overall well-being indirectly, through burden. Resilience was an important correlate of all three outcomes. Over the year of the study, caregivers improved in all three outcomes examined, but we were unsuccessful in predicting that change. Findings suggest caregivers can both be burdened and simultaneously experience good or high well-being, pointing to the importance of not generalizing from studies restricted only to caregiver burden in making recommendations about these people's overall lives.

Caregiver Well-Being: Intersections of Relationship and Gender.

We know much about caregiving women compared with caregiving men and caregiving spouses compared with caregiving adult children. We know less about the intersections of relationship and gender. This article explores this intersection through the well-being (burden and self-esteem) of caregivers to family members with dementia. Throughout British Columbia, Canada, 873 caregivers were interviewed in person for on average, over 1½ hours. The results reveal that daughters experience the highest burden but also the highest self-esteem, suggesting the role is less salient for their self-identities. Wives emerge as the most vulnerable of the four groups when both burden and self-esteem are considered. The data confirm the usefulness of the intersectionality framework for understanding co-occupancy of more than one status and indicate that positive cognitive well-being and negative affective well-being can be differentially related. Multivariate analyses confirm the importance of caregiver, not patient, characteristics for burden and self-esteem.

Spouse and adult child differences in caregiving burden.

This study compared the correlates of burden for spouse and adult child caregivers at two points in time and assessed whether correlates at T(1) predicted burden at T(2). The sample consisted of 878 caregivers to older adults throughout British Columbia who were prescribed cholinesterase inhibitors. Burden was measured six months after the older adult was prescribed the medication and one year later (n = 759). Findings suggest that adult children experience more burden than spouses at both T(1) and T(2) with adult children but not spouses decreasing their burden over time. Correlates of T(1) burden explained significant amounts of variance, revealing differential correlates for the two groups and the importance of caregiver characteristics over patient characteristics. Burden at T(2) is explained mostly by T(2) factors, plus T(1) burden, suggesting the importance of relatively immediate factors for direct effects on caregiver burden. Indirect effects operated through T(1) burden.

Caregivers--who copes how?

Within gerontological caregiving research, there is a major emphasis on stresses and burdens of this role. Yet there has been little attention directed toward the coping strategies that caregivers engage in to cope with this role and the factors that influence their adoption of different coping strategies. This article examines coping strategies and change in coping strategy over a 1-year period. In particular the differential importance of caregiver capacity (such as social support, health, and personality) compared with careload (such as hours of caregiving and need of the care recipient) is examined within a path model. Data came from a purposive sample of caregivers experiencing heavy demands. Overall, problem-focused coping is used more often than emotion-focused coping (either positive or negative) or seeking social support, but caregivers use all types simultaneously. Caregiver capacity, specifically neuroticism, is the strongest predictor of problem-focused coping with those high in neuroticism less likely to use this strategy. High neuroticism also predicts less use overall and negative emotion-focused coping strategies. Few significant predictors emerge of change; those that did were caregiver capacity, not careload variables. The use of all coping strategies, except seeking social support which remained stable, decreased over a 1-year period.