In vivo structure probing of RNA in Archaea: novel insights into the ribosome structure of Methanosarcina acetivorans.

Structure probing combined with next-generation sequencing (NGS) has provided novel insights into RNA structure-function relationships. To date, such studies have focused largely on bacteria and eukaryotes, with little attention given to the third domain of life, archaea. Furthermore, functional RNAs have not been extensively studied in archaea, leaving open questions about RNA structure and function within this domain of life. With archaeal species being diverse and having many similarities to both bacteria and eukaryotes, the archaea domain has the potential to be an evolutionary bridge. In this study, we introduce a method for probing RNA structure in vivo in the archaea domain of life. We investigated the structure of ribosomal RNA (rRNA) from Methanosarcina acetivorans, a well-studied anaerobic archaeal species, grown with either methanol or acetate. After probing the RNA in vivo with dimethyl sulfate (DMS), Structure-seq2 libraries were generated, sequenced, and analyzed. We mapped the reactivity of DMS onto the secondary structure of the ribosome, which we determined independently with comparative analysis, and confirmed the accuracy of DMS probing in M. acetivorans Accessibility of the rRNA to DMS in the two carbon sources was found to be quite similar, although some differences were found. Overall, this study establishes the Structure-seq2 pipeline in the archaea domain of life and informs about ribosomal structure within M. acetivorans.

Places of paid work and unpaid work: Caregiving and work-from-home during COVID-19.

Eldercare and places of eldercare have been radicalized with the advent of COVID-19. Growing concerns about the safety of long-term care homes, coupled with the continuation of stay-at-home orders, mean that carers are reconstructing new meanings and places of care provision. Increasingly for many Canadians, the home is rapidly becoming the nexus of one's domestic, work, and caregiving world. By interviewing working carers (n = 5) living throughout Canada, this study investigates the changing meanings of home as a place for care during the COVID-19 pandemic. Drawing upon lived experiences of informal carers engaged in the workforce, we observe a blurring of spatial and temporal boundaries between places of work and places of care. Specifically, we note that the integration of carescapes and workscapes into a single domain presents both benefits and tensions to carers, such as increased schedule flexibility and disruptions at work, respectively. Parallel to this, we also explore how previous places of safety and respite, such as independent senior residences and long-term care homes, are perceived as sites of danger and anxiety due to the vulnerability of seniors to COVID-19. This dynamic is likely to continue well into the future, as long-term care homes fall out of favour and carers adopt a more integrated approach to caregiving within their daily lives.

Les services aux aînés et les lieux qui offrent des services aux aînés ont été remis en question avec l'avènement de la COVID­19. Des préoccupations croissantes au sujet de la sécurité à long terme au sein des établissements de soins, combinées aux décrets de confinement, signifient que les personnes soignantes ont dû trouver un sens nouveau à leurs actions ainsi que des lieux différents de prestation de soins. Pour de nombreux Canadiens, le domicile devient alors le lien avec le monde domestique, le lieu travail et celui de la prestation de soins comme personne aidante. En interrogeant des personnes soignantes qui travaillent (n = 5) et qui vivent à divers endroits au Canada, la présente étude analyse les significations changeantes du domicile comme lieu de soins durant la pandémie de COVID­19. Nous inspirant d'expériences vécues par des soignants informels qui font partie de la population active, nous observons la disparition des frontières spatiales et temporelles entre les lieux de travail et les lieux de soins. Plus particulièrement, nous notons que l'intégration des lieux de travail et des lieux de soins dans un seul milieu représente des avantages et des tensions pour les personnes soignantes. Parallèlement à ceci, nous examinons également la façon dont les maisons de retraite, par exemple les résidences pour aînés et les maisons de soins de longue durée, sont perçus comme des sites de danger et d'anxiété en raison de la COVID­19. Cette dynamique se poursuivra probablement dans le futur puisque les maisons de soins de longue durée ont perdu leur attrait aux yeux du public et que les personnes soignantes adoptent une approche plus intégrée à l'égard de la prestation de soins dans leur vie quotidienne.

Biological solution conditions and flanking sequence modulate LLPS of RNA G-quadruplex structures.

Guanine-rich regions of DNA or RNA can form structures with two or more consecutive G-quartets called G-quadruplexes (GQ). Recent studies reveal the potential for these structures to aggregate in vitro. Here, we report effects of in vivo concentrations of additives-amino acids, nucleotides, and crowding agents-on the structure and solution behavior of RNAs containing GQ-forming sequences. We found that cytosine nucleotides destabilize a model GQ structure at biological salt concentrations, while free amino acids and other nucleotides do not do so to a substantial degree. We also report that the tendency of folded GQs to form droplets or to aggregate depends on the nature of flanking sequence and the presence of additives. Notably, in the presence of biological amounts of polyamines, flanking regions on the 5'-end of the RNA drive more droplet-like phase separation, while flanking regions on the 3'-end, as well as both the 5'- and 3'-ends, induce more condensed, granular structures. Finally, we provide an example of a biological sequence in the presence of polyamines and show that crowders such as PEG and dextran can selectively cause its phase separation. These findings have implications for the participation of GQS in LLPS in vivo.

RNA multimerization as an organizing force for liquid-liquid phase separation.

RNA interactions are exceptionally strong and highly redundant. As such, nearly any two RNAs have the potential to interact with one another over relatively short stretches, especially at high RNA concentrations. This is especially true for pairs of RNAs that do not form strong self-structure. Such phenomena can drive liquid-liquid phase separation, either solely from RNA-RNA interactions in the presence of divalent or organic cations, or in concert with proteins. RNA interactions can drive multimerization of RNA strands via both base-pairing and tertiary interactions. In this article, we explore the tendency of RNA to form stable monomers, dimers, and higher order structures as a function of RNA length and sequence through a focus on the intrinsic thermodynamic, kinetic, and structural properties of RNA. The principles we discuss are independent of any specific type of biomolecular condensate, and thus widely applicable. We also speculate how external conditions experienced by living organisms can influence the formation of nonmembranous compartments, again focusing on the physical and structural properties of RNA. Plants, in particular, are subject to diverse abiotic stresses including extreme temperatures, drought, and salinity. These stresses and the cellular responses to them, including changes in the concentrations of small molecules such as polyamines, salts, and compatible solutes, have the potential to regulate condensate formation by melting or strengthening base-pairing. Reversible condensate formation, perhaps including regulation by circadian rhythms, could impact biological processes in plants, and other organisms.

Long Tracts of Guanines Drive Aggregation of RNA G-Quadruplexes in the Presence of Spermine.

G-Quadruplexes (GQs) are compact, stable structures in DNA and RNA comprised of two or more tiers of quartets whose G-rich motif of tracts of two or more G's occurs commonly within genomes and transcriptomes. While thermodynamically stable in vitro, these structures remain difficult to study in vivo. One approach to understanding GQ in vivo behavior is to test whether conditions and molecules found in cells facilitate their folding. Polyamines are biogenic polycations that interact with RNA. Among common polyamines, spermine contains the highest charge and is found in eukaryotes, making it a good candidate for association with high-charge density nucleic acid structures like GQs. Using a variety of techniques, including ultraviolet-detected thermal denaturation, circular dichroism, size exclusion chromatography, and confocal microscopy, on an array of quadruplex sequence variants, we find that eukaryotic biological concentrations of spermine induce microaggregation of three-tiered G-rich sequences, but not of purely two-tiered structures, although higher spermine concentrations induce aggregation of even these. The formation of microaggregates can also be induced by addition of as little as a single G to a two-tiered structure; moreover, they form at biological temperatures, are sensitive to salt, and can form in the presence of at least some flanking sequence. Notably, GQ aggregation is not observed under prokaryotic-like conditions of no spermine and higher NaCl concentrations. The sequence, polyamine, and salt specificity of microaggregation reported herein have implications for the formation and stability of G-rich nucleic acid aggregates in vivo and for functional roles for understudied GQ sequences with only two quadruplex tiers.

Education, Training, and Mentorship of Caregivers of Canadians Experiencing a Life-Limiting Illness.

BACKGROUND: Research suggests that caregiver preparedness is essential to minimizing the negative impacts of caregiving. Not being prepared is associated with fear, anxiety, stress, and feelings of insufficiency/uncertainty specific to the caregiver role. OBJECTIVE: To determine what resources are required to ensure adequate education, training, and mentorship for caregivers of Canadians experiencing a life-limiting illness. DESIGN: Informed by the Ispos Reid survey, the methods for this article involved a rapid literature review that addressed caregiver experiences, needs and issues as they related to health, quality of life, and well-being. RESULTS: Given the burden of care, caregiver education, training, and mentorship are suggested to be best met through the palliative navigator model, wherein the patient-caregiver dyad is recognized as an integrated unit of care. CONCLUSIONS: The palliative navigator approach is a key role in the education, training, and mentorship of caregivers.

From therapeutic landscapes to healthy spaces, places and practices: A scoping review.

The term 'therapeutic landscapes' was first coined by health geographer, Wilbert Gesler, in 1992 to explore why certain environments seem to contribute to a healing sense of place. Since then, the concept and its applications have evolved and expanded as researchers have examined the dynamic material, affective and socio-cultural roots and routes to experiences of health and wellbeing in specific places. Drawing on a scoping review of studies of these wider therapeutic landscapes published between 2007 and 2016, this paper explores how, where, and to what benefit the 'therapeutic landscapes' concept has been applied to date, and how such applications have contributed to its critical evolution as a relevant and useful concept in health geography. Building on themes included in two earlier (1999, 2007) edited volumes on Therapeutic Landscapes, we summarise the key themes identified in the review, broadly in keeping with the core material, social, spiritual and symbolic dimensions of the concept initially posited by Gesler. Through this process, we identify strengths and limitations of the concept and its applications, as well as knowledge gaps and promising future directions for work in this field, reflecting critically on its value within health geography and its potential contribution to wider interdisciplinary discussions and debates around 'healthy' spaces, places, and related practices.

Evaluation of caregiver-friendly workplace policy (CFWPs) interventions on the health of full-time caregiver employees (CEs): implementation and cost-benefit analysis.

BACKGROUND: Current Canadian evidence illustrating the health benefits and cost-effectiveness of caregiver-friendly workplace policies is needed if Canadian employers are to adopt and integrate caregiver-friendly workplace policies into their employment practices. The goal of this three-year, three study research project is to provide such evidence for the auto manufacturing and educational services sectors. The research questions being addressed are: What are the impacts for employers (economic) and workers (health) of caregiver-friendly workplace policy intervention(s) for full-time caregiver-employees? What are the impacts for employers, workers and society of the caregiver-friendly workplace policy intervention(s) in each participating workplace? What contextual factors impact the successful implementation of caregiver-friendly workplace policy intervention(s)? METHODS: Using a pre-post-test comparative case study design, Study A will determine the effectiveness of newly implemented caregiver-friendly workplace policy intervention(s) across two workplaces to determine impacts on caregiver-employee health. A quasi-experimental pre-post design will allow the caregiver-friendly workplace policy intervention(s) to be tested with respect to potential impacts on health, and specifically on caregiver employee mental, psychosocial, and physical health. Framed within a comparative case study design, Study B will utilize cost-benefit and cost-effectiveness analysis approaches to evaluate the economic impacts of the caregiver-friendly workplace policy intervention(s) for each of the two participating workplaces. Framed within a comparative case study design, Study C will undertake an implementation analysis of the caregiver-friendly workplace policy intervention(s) in each participating workplace in order to determine: the degree of support for the intervention(s) (reflected in the workplace culture); how sex and gender are implicated; co-workers' responses to the chosen intervention(s), and; other nuances at play. It is hypothesized that the benefits of the caregiver-friendly workplace policy intervention(s) will include improvements in caregiver-employees' mental, psychosocial and physical health, as well as evidence of cost-benefit and cost-effectiveness for the employer. DISCUSSION: The expected project results will provide the research evidence for extensive knowledge translation work, to be carried out in collaboration with our knowledge transition partners, to the employer/human resources and occupational health/safety target populations. TRIAL REGISTRATION: ISRCTN16187974 Registered August 25, 2016.

Revisiting the use of 'place' as an analytic tool for elucidating geographic issues central to Canadian rural palliative care.

In 2010, Castleden and colleagues published a paper in this journal using the concept of 'place' as an analytic tool to understand the nature of palliative care provision in a rural region in British Columbia, Canada. This publication was based upon pilot data collected for a larger research project that has since been completed. With the addition of 40 semi-structured interviews with users and providers of palliative care in four other rural communities located across Canada, we revisit Castleden and colleagues' (2010) original framework. Applying the concept of place to the full dataset confirmed the previously published findings, but also revealed two new place-based dimensions related to experiences of rural palliative care in Canada: (1) borders and boundaries; and (2) 'making' place for palliative care progress. These new findings offer a refined understanding of the complex interconnections between various dimensions of place and palliative care in rural Canada.

Impacts of care-giving and sources of support: a comparison of end-of-life and non-end-of-life caregivers in Canada.

This is the second in a series of papers that deal with care-giving in Canada, as based on data available from the Canadian General Social Survey (2007). Building on the first paper, which reviewed the differences between short-term, long-term and end-of-life (EOL) caregivers, this paper uniquely examines the caregiver supports employed by EOL caregivers when compared to non-EOL caregivers (short-term and long-term caregivers combined). Both papers employ data from Statistics Canada's General Social Survey (GSS Cycle 21: 2007). The GSS includes three modules, where respondents were asked questions about the unpaid home care assistance that they had provided in the last 12 months to someone at EOL or with either a long-term health condition or a physical limitation. The objective of this research paper was to investigate the link between the impact of the care-giving experience and the caregiver supports received, while also examining the differences in these across EOL and non-EOL caregivers. By way of factor analysis and regression modelling, we examine differences between two types of caregivers: (i) EOL and (ii) non-EOL caregivers. The study revealed that with respect to socio-demographic characteristics, health outcomes and caregiver supports, EOL caregivers were consistently worse off. This suggests that although all non-EOL caregivers are experiencing negative impacts from their care-giving role, comparatively greater supports are needed for EOL caregivers.

Sense of belonging to local community in small-to-medium sized Canadian urban areas: a comparison of immigrant and Canadian-born residents.

BACKGROUND: Sense of belonging is recognized as an important determinant of psychological and physical well-being. Research in Canada has shown that sense of belonging has increased in recent years although important variations exist between regions and among certain ethnic groups. METHODS: The objective of this paper is to examine differences in sense of belonging to local community between Canadian-born and immigrant residents in three small-to-medium sized urban areas using primary data collected in: 1) Charlottetown, PEI; 2) Hamilton, Ontario, and 3) Saskatoon, Saskatchewan. A mixed method approach is used in the analysis. First, a household telephone survey (n = 1529) asked respondents to rate their sense of belonging. This data was analyzed by way of summary statistics and ordered logistic regression. Second, a series of focus groups with immigrants in the three cities included questions on belonging and well-being (n = 11). RESULTS: The research found that sense of belonging is very high in the overall sample and in the three study sites, particularly in Charlottetown, and that there are no significant differences in levels of belonging between Canadian-born and immigrant respondents. However, among immigrants, sense of belonging was significantly lower for those living in Canada for 5 years or less. Consistent with the literature, positive mental health was found to be strongly associated with a positive sense of belonging for both Canadian-born and immigrant respondents. For immigrants, positive sense of belonging was associated with full-time work and home-ownership, two factors not associated with the Canadian-born population. The paper also revealed that immigrants placed greater importance on knowing their neighbours on a first name basis and generally trusting people as determinants of a positive sense of belonging. Finally, the focus groups revealed that in addition to displaying a sense of belonging to their city of residence, immigrants also maintain strong feelings of belonging to their ethnic group. CONCLUSIONS: The paper concludes by offering several public health recommendations on how belonging can be enhanced among recent immigrants in smaller Canadian cities; these include improved coordination of services in order to contribute to a less overwhelming settlement process for immigrants.

Cultural influences on palliative family caregiving: service recommendations specific to the Vietnamese in Canada.

BACKGROUND: Much of what is known about family caregiving at end-of-life in Canada has been studied within the context of various disease categories or across different care settings, rather than in relation to specific ethnic/cultural identities. Such homogeneity belies the impact of cultural and social factors on the experiences and outcomes of palliative and end-of-life (P/EOL) care. We know little about the end-of-life experiences of Vietnamese-Canadian families. Consequently, there is a lack of understanding around how to best meet the needs of Vietnamese care recipients, caregivers, and their families via the health service system, whose services of which we know they have limited access. RESULTS: To determine a set of service recommendations for health care settings (including the home) specific to caring for Vietnamese (P/EOL) care recipients, caregivers and their families, a qualitative instrumental case-study design was employed. The perspectives of 18 adult Vietnamese family caregivers (FCGs) were obtained. In addition, seven semi-structured key informant interviews were implemented with a range of personnel from community service providers to front-line health care professionals. The ways in which caregiving was perceived and expressed were reflected in three thematic findings: (1) Natural: identity and care work; (2) Intentional: whole person care; and (3) Intensive: standards, struggle, and the context of care. Ten main recommendations have been vetted with service provider leaders and confirmed as being appropriate for uptake. CONCLUSIONS: The ten service recommendations for health care settings (including the home), if implemented, would contribute to improved P/EOL services for the Vietnamese population. Further research involves the evaluation of these policy and programs.

Care-giving as a Canadian-Vietnamese tradition: 'it's like eating, you just do it'.

The objective of this study was to examine how Vietnamese family caregivers (FCGs) perceive, manage and experience end-of-life care-giving for seriously ill family members. Using an instrumental case study design, this longitudinal qualitative research employed the use of cultural brokers/language interpreters to help ensure that the research was conducted in a culturally-appropriate manner. Participants (n = 18) discussed their experiences of care-giving within the context of a traditional cultural framework, which was found to influence their motivations and approaches to care-giving, as well as their propensities towards the use of various supports and services. The study was carried out in southern Ontario, Canada, and participants were providing home-based care-giving in the community. Data were collected throughout 2010 and 2011. The ways in which care-giving was perceived and expressed are reflected in three themes: (i) Natural: identity and care work; (ii) Intentional: whole-person care; and (iii) Intensive: standards, struggle and the context of care. This research confirms the need for culturally-appropriate services and supports while illustrating that Vietnamese FCGs not only value, but are also likely to use healthcare and social services if they are language-accessible, built on trust and demonstrate respect for their values as individuals, regardless of culture.

Agenda-setting for Canadian caregivers: using media analysis of the maternity leave benefit to inform the compassionate care benefit.

The Compassionate Care Benefit was implemented in Canada in 2004 to support employed informal caregivers, the majority of which we know are women given the gendered nature of caregiving. In order to examine how this policy might evolve over time, we examine the evolution of a similar employment insurance program, Canada's Maternity Leave Benefit. National media articles were reviewed (n = 2,698) and, based on explicit criteria, were analyzed using content analysis. Through the application of Kingdon's policy agenda-setting framework, the results define key recommendations for the Compassionate Care Benefit, as informed by the developmental trajectory of the Maternity Leave Benefit. Recommendations for revising the Compassionate Care Benefit are made.

Differential impacts of care-giving across three caregiver groups in Canada: end-of-life care, long-term care and short-term care.

Using data from Statistic Canada's General Social Survey Cycle 21 (GSS 2007), this study explores whether differences exist in the impacts of care-giving among three groups of caregivers providing informal care either in the caregiver's or recipient's home, or in other locations within the community: (i) those providing end-of-life (EOL) care (n = 471); (ii) those providing long-term care (more than 2 years) for someone with a chronic condition or long-term illness (n = 2722); and (iii) those providing short-term care (less than 2 years) for someone with a chronic condition or long-term illness (n = 2381). This study lays out the variation in sociodemographic characteristics across the three caregiver groups while also building on our understanding of the differential impacts of care-giving through an analysis of determinants. All three groups of caregivers shared a number of sociodemographic characteristics, including being female, married, employed and living in a Census Metropolitan Area (CMA). With respect to health, EOL caregivers were found to have significantly higher levels of 'fair or poor' self-assessed health than the other two groups. Overall, the findings suggest that EOL caregivers are negatively impacted by the often additional role of care-giving, more so than both short-term and long-term caregivers. EOL caregivers experienced a higher proportion of negative impacts on their social and activity patterns. Furthermore, EOL caregivers incurred greater financial costs than the other two types of informal caregivers. The impacts of EOL care-giving also negatively influence employment for caregivers when compared with the other caregiver groups. Consequently, EOL caregivers, overall, experienced greater negative impacts, including negative health outcomes, than did long-term or short-term caregivers. This provides the evidence for the assertion that EOL care-giving is the most intense type of care-giving, potentially causing the greatest caregiver burden; this is shown through the greater negative impacts experienced by the EOL caregivers when compared with the short-term and long-term caregivers.

A qualitative study examining the sustainability of shared care in the delivery of palliative care services in the community.

BACKGROUND: This paper focuses on the sustainability of existing palliative care teams that provide home-based care in a shared care model. For the purposes of this study, following Evashwick and Ory (2003), sustainability is understood and approached as the ability to continue the program over time. Understanding factors that influence the sustainability of teams and ways to mitigate these factors is paramount to improving the longevity and quality of service delivery models of this kind. METHODS: Using qualitative data collected in interviews, the aim of this study is twofold: (1) to explore the factors that affect the sustainability of the teams at three different scales, and; (2) based on the results of this study, to propose a set of recommendations that will contribute to the sustainability of PC teams. RESULTS: Sustainability was conceptualized from two angles: internal and external. An overview of external sustainability was provided and the merging of data from all participant groups showed that the sustainability of teams was largely dependent on actors and organizations at the local (community), regional (Local Health Integration Network or LHIN) and provincial scales. The three scales are not self-contained or singular entities but rather are connected. Integration and collaboration within and between scales is necessary, as community capacity will inevitably reach its threshold without support of the province, which provides funding to the LHIN. While the community continues to advocate for the teams, in the long-term, they will need additional supports from the LHIN and province. The province has the authority and capacity to engrain its support for teams through a formal strategy. The recommendations are presented based on scale to better illustrate how actors and organizations could move forward. CONCLUSIONS: This study may inform program and policy specific to strategic ways to improve the provision of team-based palliative home care using a shared care model, while simultaneously providing direction for team-based program delivery and sustainability for other jurisdictions.

Core aspects of "empowering" caregivers as articulated by leaders in home health care: palliative and chronic illness contexts.

Home-based family caregivers are often assisted by home care services founded upon principles of health promotion, such as empowerment. Using an interpretive approach and in-depth qualitative interviews, the authors examine descriptions of family empowerment by leaders and managers in the field of home health care in the province of British Columbia, Canada. In a culture of fiscal restraint, dying at home, and self-care, participants described how home care nurses empower family caregivers to meet these objectives. This involves educating and informing caregivers, engaging them in planning and decision-making, and reassuring them that their role is manageable and worthwhile. Though some participants viewed providing supports as empowering (e.g., during times of crisis), others viewed them as disempowering (by promoting dependence). Empowered caregivers were characterized as able to provide home care, confident of their capabilities, and believing that their work is positive and beneficial. The long-term goal of empowerment was characterized as client self-care and/or family care and decreased dependence on formal services.

Alternative health care consultations in Ontario, Canada: A geographic and socio-demographic analysis.

BACKGROUND: An important but understudied component of Canada's health system is alternative care. The objective of this paper is to examine the geographic and socio-demographic characteristics of alternative care consultation in Ontario, Canada's largest province. METHODS: Data is drawn from the Canadian Community Health Survey (CCHS Cycle 3.1, 2005) for people aged 18 or over (n = 32,598) who had a consultation with an alternative health care provider. Four groups of consultations are examined: (1) all consultations (2) massage therapy (3) acupuncture, and (4) homeopath/naturopath. Descriptive statistics, mapping and logistic regression modeling are employed to analyze the data and to compare modalities of alternative health care use. RESULTS: In 2005, more than 1.2 million adults aged 18 or over consulted an alternative health care provider, representing about 13% of the total population of Ontario. The analysis revealed a varied geographic pattern of consultations across the province. Consultations were fairly even across the urban to rural continuum and rural residents were just as likely to consult a provider as their urban counterparts. From a health perspective, people with a chronic condition, lower health status and self-perceived unmet health care needs were more likely to see an alternative health provider. Women with chronic conditions such as fibromyalgia, high blood pressure, chronic fatigue syndrome and chemical sensitivities were more likely to see an alternative provider if they felt their health care needs were not being met. CONCLUSIONS: The analysis revealed that geography is not a factor in determining alternative health care consultations in Ontario. By contrast, there is a strong association between these consultations and socio-demographic characteristics particularly age, sex, education, health and self-perceived unmet health care needs. The results underscore the importance of women's health needs as related to alternative care use. The paper concludes that there is a need for more place-specific research that explores the reasons why people use specific types of alternative health care as tied to socio-economic status, health, place of residence, and knowledge of these treatments.

Canada's Compassionate Care Benefit: is it an adequate public health response to addressing the issue of caregiver burden in end-of-life care?

BACKGROUND: An increasingly significant public health issue in Canada, and elsewhere throughout the developed world, pertains to the provision of adequate palliative/end-of-life (P/EOL) care. Informal caregivers who take on the responsibility of providing P/EOL care often experience negative physical, mental, emotional, social and economic consequences. In this article, we specifically examine how Canada's Compassionate Care Benefit (CCB)--a contributory benefits social program aimed at informal P/EOL caregivers--operates as a public health response in sustaining informal caregivers providing P/EOL care, and whether or not it adequately addresses known aspects of caregiver burden that are addressed within the population health promotion (PHP) model. METHODS: As part of a national evaluation of Canada's Compassionate Care Benefit, 57 telephone interviews were conducted with Canadian informal P/EOL caregivers in 5 different provinces, pertaining to the strengths and weaknesses of the CCB and the general caregiving experience. Interview data was coded with Nvivo software and emerging themes were identified by the research team, with such findings published elsewhere. The purpose of the present analysis was identified after comparing the findings to the literature specific to caregiver burden and public health, after which data was analyzed using the PHP model as a guiding framework. RESULTS: Informal caregivers spoke to several of the determinants of health outlined in the PHP model that are implicated in their burden experience: gender, income and social status, working conditions, health and social services, social support network, and personal health practises and coping strategies. They recognized the need for improving the CCB to better address these determinants. CONCLUSIONS: This study, from the perspective of family caregivers, demonstrates that the CCB is not living up to its full potential in sustaining informal P/EOL caregivers. Effort is required to transform the CCB so that it may fulfill the potential it holds for serving as one public health response to caregiver burden that forms part of a healthy public policy that addresses the determinants of this burden.

Tracking the evolution of hospice palliative care in Canada: a comparative case study analysis of seven provinces.

BACKGROUND: An aging population, rise in chronic illnesses, increase in life expectancy and shift towards care being provided at the community level are trends that are collectively creating an urgency to advance hospice palliative care (HPC) planning and provision in Canada. The purpose of this study was to analyze the evolution of HPC in seven provinces in Canada so as to inform such planning and provision elsewhere. We have endeavoured to undertake this research out of awareness that good future planning for health and social care, such as HPC, typically requires us to first look backwards before moving forward. METHODS: To identify key policy and practice events in HPC in Canada, as well as describe facilitators of and barriers to progress, a qualitative comparative case study design was used. Specifically, the evolution and development of HCP in 7 strategically selected provinces is compared. After choosing the case study provinces, the grey literature was searched to create a preliminary timeline for each that described the evolution of HPC beginning in 1970. Key informants (n = 42) were then interviewed to verify the content of each provincial timeline and to discuss barriers and facilitators to the development of HPC. Upon completion of the primary data collection, a face-to-face meeting of the research team was then held so as to conduct a comparative study analysis that focused on provincial commonalities and differences. RESULTS: Findings point to the fact that HPC continues to remain at the margins of the health care system. The development of HPC has encountered structural inheritances that have both sped up progress as well as slowed it down. These structural inheritances are: (1) foundational health policies (e.g., the Canada Health Act); (2) service structures and planning (e.g., the dominance of urban-focused initiatives); and (3) health system decisions (e.g., regionalization). As a response to these inheritances, circumventions of the established system of care were taken, often out of necessity. Three kinds of circumventions were identified from the data: (1) interventions to shift the system (e.g., the role of advocacy); (2) service innovations (e.g., educational initiatives); and (3) new alternative structures (e.g., the establishment of independent hospice organizations). Overall, the evolution of HPC across the case study provinces has been markedly slow, but steady and continuous. CONCLUSIONS: HPC in Canada remains at the margins of the health care system. Its integration into the primary health care system may ensure dedicated and ongoing funding, enhanced access, quality and service responsiveness. Though demographics are expected to influence HPC demand in Canada, our study confirms that concerned citizens, advocacy organizations and local champions will continue to be the agents of change that make the necessary and lasting impacts on HPC in Canada.