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Family (i.e., unpaid) caregiving has long been thought of as a 'woman's issue', which ultimately results not only in gendered, but also financial and health inequities. Because of this, gender-based analyses have been prioritized in caregiving research. However, trends in current feminist scholarship demonstrate that gender intersects with other axes of difference, such as culture, socio-economic status, and geography to create diverse experiences. In this analysis we examine how formal front-line palliative care providers understand the role of such diversities in shaping Canadian family caregivers' experiences of end-of-life care. In doing so we consider the implications of these findings for a social benefit program aimed at supporting family caregivers, namely the Compassionate Care Benefit (CCB).
This analysis contributes to a utilization-focused evaluation of Canada's CCB, a social program that provides job security and limited income assistance to Canadian family caregivers who take a temporary leave from employment to provide care for a dying family member at end-of-life. Fifty semi-structured phone interviews with front-line palliative care providers from across Canada were conducted and thematic diversity analysis of the transcripts ensued.
Findings reveal that experiences of caregiving are not homogenous and access to services and supports are not universal across Canada. Five axes of difference were commonly raised by front-line palliative care providers when discussing important differences in family caregivers' experiences: culture, gender, geography, lifecourse stage, and material resources. Our findings reveal inequities with regard to accessing needed caregiver services and resources, including the CCB, based on these axes of difference.
We contend that without considering diversity, patterns in vulnerability and inequity are overlooked, and thus continually reinforced in health policy. Based on our findings, we demonstrate that re-framing categorizations of caregivers can expose specific vulnerabilities and inequities while identifying implications for the CCB program as it is currently administered. From a policy perspective, this analysis demonstrates why diversity needs to be acknowledged in policy circles, including in relation to the CCB, and seeks to counteract single dimensional approaches for understanding caregiver needs at end-of-life. Such findings illustrate how diversity analysis can dramatically enhance evaluative health policy research.
Keywords:Diversity; Caregiving; Canada; End-of-life; Qualitative; Compassionate Care Benefit
Determining who provides care, whether paid or unpaid, is a complex and dynamic process embedded within socially- and politically- defined sets of expectations and practices regarding rights and responsibilities [1,2]. Among Western nations, neoliberal policies and resulting health care reforms are increasingly shifting this responsibility of care from the state to the voluntary and informal sectors [3]. This shift has resulted in an increased deinstitutionalization of care, moving caregiving out of formal settings like hospitals and into the community, especially the home. As a result, greater expectations are now being placed on those within the home, largely family members and/or friends who are unpaid and untrained, to take on the role of providing care in this informal environment [3-5]. Generally, these family caregiversa provide physical and emotional care as well as care coordination, among other tasks, for those who are in need of support [6]. In Canada, family caregivers and the supports they provide have become the backbone of the health and long-term care systems [6], with estimates indicating that there are approximately 1.5-2 million family caregivers in Canada contributing up to $26 billion of unpaid care work annually [7,8]. Due to a rapidly aging population and unprecedented numbers of citizens requiring end-of-life care, a growing number of these caregivers are being called upon to provide care for dying family members [9]. Considering the valuable role that these family caregivers play in the Canadian health care system, it is imperative we seek ways to ensure they have access to the supports that they need to provide care in a way that does not negatively impact their own health and wellbeing.
Although family caregiving at end-of-life can bring positive, empowering, and memorable experiences [10], it is also commonly associated with personal costs. Importantly, such costs are not distributed equally across society. For example, the shift of care from institutions to the home means that those who work within the home, largely women, are filling the gaps in labour and services that have been left by neo-liberal policies [1,11]. Feminist scholars have long acknowledged that the role of family caregiving is largely taken up by women because they are often associated with the traditional gendered division of unpaid work within the home [1,12-14]. Emphasizing the gendered aspect of care provision, Bondi (2008) describes how caring work is 'given' to women and that this often becomes a defining characteristic of their self-identity and lifework. Taking a closer look, however, it becomes apparent that women are not one homogenous group, but are complex and diverse individuals who simultaneously inhabit other distinct socioeconomic, cultural, political, and historical locations, and as such, their experiences of caregiving are likely to vary dramatically [15,16]. Therefore, caregiving results not only in gendered inequities, but also complexly overlaps with other factors of social location that may result in particular economic and health inequities being experienced in light of giving care [13].
Taken together, the emotional, psychological, physical, and financial demands that occur as a result of family caregiving are commonly referred to as 'caregiver burden' [17]. For example, the mental drain associated with mastering vast amounts of new information on a range of complex issues (e.g., medication management, symptom observation) can be more than some caregivers are able to cope, thereby creating stress and ultimately burnout [18,19]. The negative health impacts associated with such burdens are significant and have been reported in older spousal caregivers to increase mortality rates by 63% when compared to non-caregivers [20]. Inequities in income are also commonly experienced by family caregivers. For example, the Canadian Caregiver Coalition (2009) reports that these caregivers frequently incur more than $100 per month in direct costs (e.g., supplies, prescriptions, travel costs), which totals approximately $80 million in out-of-pocket costs paid by Canadian caregivers each year. For some, the dual responsibility of maintaining paid employment while providing care is challenging and such stress can further diminish the health of family caregivers and heighten caregiver burden [9,19].
Importantly, the above-mentioned examples of negative health and economic impacts associated with caregiver burden are not experienced uniformly: inequities exist, which are shaped by vulnerability to stressors and exposure to risk [21]. Furthermore, family caregivers' abilities to cope with stress and burden and to access needed supports is largely shaped by the situated social/physical locations in which they live [1,14,22], which in turn, influences whether or not they experience negative health outcomes.
Canada's federal government responded to the need to lessen caregiver burden and better support the needs of family caregivers at end-of-life by implementing the Compassionate Care Benefit (CCB) program in January of 2004. The primary goal of the CCB is to alleviate financial burdens by providing income assistance and job security to workers who take temporary leave from employment to care for a terminally ill family member at risk of dying within 26 weeks [23]. Program recipients can receive up to 55% of their average insurable earnings, to a maximum of $485 per week, over a six-week period to provide care. Because Human Resources and Skills Development Canada (HRSDC) administers this program as an Employment Insurance special benefit, eligible applicants must demonstrate that their regular weekly earnings have decreased by more than 40% and that they have accumulated 600 insurable hours over the preceding 52-week period. Although estimates demonstrate that more than 1.5 million Canadians provide care for dying individuals annually [7], HRSDC reports that only 5,978 successful claims were made during the 2009/10 fiscal year [24]. One reason for the limited uptake is that those who are working part-time, are employed seasonally, or are unemployed are eliminated due to the eligibility criteria, thereby excluding many family caregivers. The design of the program itself is also thought to reinforce low uptake through lack of appeal to caregivers for a number of reasons, including that: support lasts for only six weeks, recipients must go through a two-week waiting period before benefits are initiated, and it is difficult to accurately prognosticate death within a 26-week window [25-27]. Aside from program-specific features, there exists a more critical obstacle to the CCB's successful uptake: the general lack of public awareness regarding the existence of the program [28-30]. Specifically, family caregivers are routinely not gaining access to information about the CCB program.
Considering that family caregivers, and particularly end-of-life family caregivers, play such a significant role in Canadian society, it is imperative to seek strategies that minimize or alleviate inequitable caregiver burden and the potential negative physical/mental/emotional health, employment, and financial outcomes it bestows, especially upon those who are most vulnerable [6,9]. However, the diversity and differing vulnerabilities that exist within the caregiver population are rarely recognized in existing research and associated health and health-related policy. This signals the need for a re-framing of how we view caregivers and caregiving needs more generally, in order to develop effective policies and programs that recognize difference and account for inequities within this group. In relation to the CCB, what remains unexplored is how family caregivers' differing social/physical locations may be informing the underutilization of the program, or may be exposing specific groups to harsher uptake barriers than others. In this article, we pose the question: for whom is this program not working? We address this question through undertaking a diversity analysis that highlights how particular axes of difference may ultimately inform family caregivers' use of the CCB. More specifically, our objective is to examine family caregiving at the end-of-life in Canada from the perspective of formal front-line palliative care providers (e.g., community nurses, social workers) in order to gain a better understanding of the axes of difference directly impacting family caregivers' support opportunities, access, and outcomes. Front-line palliative care providers' employment allows them on-going access into the lived realities of numerous families experiencing death and dying. As such, they hold a broad and valuable experiential perspective from which to comment upon the general differences they observe between the family caregivers they interact with in their work. The results of our analysis are used to understand the implications of caregiver diversity for the CCB and also the need to re-frame how caregivers and caregiver needs are understood and acted upon in health and social policy more generally.
This analysis contributes to a larger evaluation study that aimed to gather the perspectives of the CCB program's key stakeholder groups, namely family caregivers, front-line palliative care providers, and human resources personnel, in order to offer policy-relevant recommendations for program improvement. The overarching methodology of the evaluative study is Patton's [31] utilization-focused evaluative approach, which aims to inform program improvements through the use of research findings with a specific emphasis upon "intended use by intended users" [20,31], emphasis in original. Examining diversity within the caregiver experience was not an original objective of the CCB evaluation study, but rather emerged as an important issue from the evaluation study findings. Although family caregivers were interviewed for the larger evaluation, in this analysis we draw on interviews with front-line palliative care providers because they were able to 'step-back' from offering an experiential account of caregiving and comment more broadly on trends observed among those family caregivers they have worked with. These observations were informed by their employment, which offers them intimate access to lived realities of families experiencing death and dying.
Data collection
Fifty front-line palliative care providers were sought to participate in phone interviews from across Canada, ten from each of five provinces chosen to reflect Canada's linguistic and regional diversity: British Columbia, Manitoba, Ontario, Quebec, and Newfoundland and Labrador. We purposely aimed to include participants from an array of workplace settings (e.g., administrative, clinical, home care) and occupational groups (e.g., nurses, physicians, social workers) in order to garner as much diversity in employment sectors as possible. Participants were required to be formal palliative care providers working in one of the target provinces whose employment placed them in direct contact with end-of-life family caregivers and/or care recipients. Prior to data collection, ethics approval was granted by the research ethics offices at Simon Fraser and McMaster Universities.
The recruitment strategy involved widely disseminating an information letter written in English and French that summarized the study purpose and participant inclusion criteria. The letter was sent to a number of palliative and hospice organizations in the target provinces asking them to share it with their own employees and other organizations in their networks. Interested potential participants were asked to reply by e-mail or call a toll-free number to schedule an interview in either English or French at a time convenient for them.
Semi-structured interviews were conducted via telephone by the first author. Generally, the interviews lasted 30 minutes and inquired into: the CCB's usefulness; its barriers and facilitators to access; experiences of recommending the CCB to potential applicants; and suggestions for program improvement. Prior to the interview, interviewees were informed of their rights as participants in a research study and provided their verbal consent. In total, 48 English- and two French-language interviews were conducted (n = 50), which resulted in 10 participants for each of the five provinces. Participants came from a variety of occupational groupings and work settings, as shown in Table 1. Thirty-seven held full-time employment, 12 worked part-time, and one had retired one month prior to the interview. Participants' years of experience working in palliative care are shown in Table 2.
Table 1. Front-line palliative care provider participants by occupational grouping
Table 2. Employment experience of the front-line palliative care provider participants
Forty-nine interviews were digitally recorded and transcribed verbatim, and one was recorded through note taking due to this participant's preference to not be recorded. Transcripts and notes were entered into NVivo7™ data management software and thematic analysis was conducted. Thematic analysis involves identifying dominant emergent themes in the data that are then used as categories for analysis [32]. Emerging from the larger evaluative study findings was the main theme of 'diversity' among caregivers and caregiving experiences. Thus, a secondary analysis was performed upon the front-line palliative care provider data set using a critical diversity method.
To enact a critical diversity analysis we first developed a coding scheme that integrated both inductive and deductive perspectives informed by Hankivsky, et al.'s [33] definitions of social categories. Our six-step process of coding involved: (1) reviewing three randomly selected transcripts to identify initial themes regarding diversity; (2) drafting a full coding scheme; (3) revising the full coding scheme following further transcript review for confirmation; (4) coding five transcripts; (5) reviewing coded transcripts in order to refine the scheme (e.g., collapsing redundant themes); and (6) coding the entire dataset with the refined scheme. In order to enhance consistency of interpretation, multiple investigators were involved in implementing the six-step coding process, as well as in reviewing the associated coding extracts that were used to inform the present analysis.
Our critical diversity analysis draws upon the emergent inductive codes of 'culture', 'gender', and 'geography', among others, as well as a number of deductive sub-codes such as 'family caregivers – differences in – culture' and 'family caregivers – differences in – gender'. Reviewing these particular coding extracts, we determined as a group the scope, limitations, and interrelationships within and between each axis of diversity, creating an interpretive framework for understanding how each was understood by the interviewees. Our approach to doing this was informed by Young's notion of seriality [34], which disrupts the notion that 'groups' are to be organized by single-dimensional characteristics (e.g., women), and emphasizes that people are individuals in a 'series' with their positioning based on various sets of material and immaterial social constructs. In addition to this, our analysis was also informed by the intersectionality work of Hankivsky et al. [33], which requires consideration of simultaneous interactions between different aspects of social identity as well as the impact of systems and processes of oppression and domination. Our approach of intersectionality used in this analysis is grounded in lived experiences, while providing a theoretical foundation for the pursuit of social justice. Importantly, we did not begin with predetermined categories of difference that were of interest to us, but instead relied on these axes to emerge from the data through undertaking the coding and analyses processes. Following our consensus regarding the interpretation of various axes of difference that emerged, we moved to identify ways in which these particular diversities matter for the CCB specifically and other caregiver support programs more broadly.
Thematic critical diversity analysis revealed five axes of difference that were commonly raised by front-line palliative care providers when discussing end-of-life family caregivers: (1) culture; (2) gender; (3) geography; (4) lifecourse stage; and (5) material resources. While there is no doubt that other significant differences exist among family caregivers that directly influence their experiences of providing care, such as sexual orientation, (dis)ability, and health status, they were not explicitly discussed by the participants and so are not examined here. It is important to emphasize our recognition that such axes of difference are not static containers, but are fluid and dynamic, varying across time, place, and especially context [35,36]. Furthermore, we also recognize that lived realities are highly complex and 'differences' are inherently constructed, relational, and interconnected [16,37]. However, we believe that a critical starting point to addressing inequities lies in determining what differences exist and how they impact experiences of family caregiving at end-of-life. As such, in the following subsections we discuss our findings of each of the five axes of difference, which are defined in Table 3 in detail. In the discussion section we then move to consider these axes in relation to one another, and how their intersection may heighten the barriers family caregivers face in utilizing the CCB program.
Table 3. Operating definitions employed in the diversity analysis
Our findings indicate that front-line palliative care providers perceive cultural differences to play a major role in influencing experiences of family caregiving at end-of-life, especially when personal beliefs contrast with the clinical culture of the Canadian health care system. For example, an occupational therapist noted that in her region "a lot of our doctors are not from the area or even from Canada, so I guess the biggest cultural barrier is between the doctors and the patients themselves." Participants discussed how families from various cultural groups can have differing understandings, priorities, and/or needs, thus requiring additional support in order to achieve quality end-of-life care. As an example, a palliative care coordinator explained that she had worked with a family of Chinese heritage who did not want a death to occur in their home as this was believed to negatively affect the value of the home, both spiritually and financially. In this case, cultural preferences had informed decisions regarding the place of care and ultimately death.
Generally, participants believed that caregiver supports (e.g., psychosocial, religious, spiritual, bereavement) needed to accommodate families from differing cultural backgrounds as much as possible. Emphasizing the complexity of this task, however, a palliative care nurse remarked "[t]here's lots to recognizing the different cultures and how different people approach dying, how they want their family members to approach it. [But] do they [care recipients and family caregivers] ever want to talk about it?" Lack of discussion about cultural needs may result in some family caregivers not having access to needed supports. For example, several participants explained that First Nations or Métis family caregivers and care recipients should always be asked if they have any spiritual and cultural needs related to end-of-life or family caregiving, such as performing a sweet grass or smudging ceremonyb. The challenge here, however, is that front-line providers must first be able to discern which families are First Nation or Métis in order to ask them if they would like such supports. One's cultural heritage, however, may not always be easily recognizable; therefore, such an approach relies heavily on self-identification (i.e., explicitly presenting oneself as First Nations or Métis to others). As self-identification may not always be appropriate or desirable, First Nation or Métis may face barriers in accessing supports that meet their cultural needs.
As per the definition of culture used for this analysis, language is one of the many various cultural components discussed by participants. Participants raised language as an important issue in the experience of caregiving, specifically with regard to language barriers and caregivers' abilities to access necessary information and supports. These comments were often raised with regard to newcomers to Canada, where participants stressed that not being able to communicate is a major barrier to determining caregiver needs. A social worker explained that: "the challenge sometimes is getting someone who speaks English [in the home]. And sometimes the ones who do speak English are working, while it's the sister-in-law or the daughter-in-law, the one that's providing all the care, that doesn't speak English, so we use translators a lot." However, communication through a translator was seen as problematic, especially if information was being "filtered" through another family member because details may become exaggerated upon or simply left out. It was also noted that language barriers can create major informational needs and thus increase the risk of caregiver burnout and stress as these caregivers can be hesitant to seek out the help they need.
Traditionally, and still today, the role of family caregiver is largely ascribed to women. Unsurprisingly, participants confirmed this as a clear observation from their work experiencec. Some participants, however, stated that they have noticed a recent increase in men taking on caregiving responsibilities, though not necessarily as the primary caregiver. As a social worker explained, "[t]he reality is that there is a gender bias still in our society, so women are still primarily the family caregivers, they're primarily the child-rearers. There are many, many men who are doing those things, but women are still primarily in that role." Participants widely agreed with this view, explaining that they perceived societal expectations to still fall more heavily upon women to provide care within the home, thus resulting in the majority of the family caregivers they interacted with being women. In some situations, participants also observed women who were not immediate family, for example a daughter-in-law or sister-in-law, providing care, which further demonstrates the extent of gendered implications associated with caregiving expectations.
Although it was clear that participants were cautious to convey gendered generalizations, some did believe that differences existed between men and women with regard to caregiving styles. For example, this community health care nurse explained that:
"Female caregivers are more in tune to the person's physical needs, whereas male caregivers tend to get very organized and business-like about it. You know, they'll pull together little flow-charts and books and sort of stand back and let me deal with the things like bowel care and hygiene… I find that men have a really hard time with that personal care aspect."
Given such observations, it is not surprising that some participants raised gender-specific caregiving needs. These participants felt that it was men, rather than women, who required extra support in order to successfully fulfill their role as a family caregiver. For example, a palliative care coordinator stated that in some cases, challenges arise when a woman who has always taken care of everything in the home is dying and in need of care "and the husband doesn't have a clue how to, you know, do anything…" This sentiment was echoed by a home care nurse who stated that sometimes "[m]en…looking after women, where the woman has been the manager of the house, need a lot more information on managing home situations than a woman might." Considering these findings, it becomes apparent that gender and gendered expectations regarding behaviour play a role in determining caregiver support needs.
Several front-line palliative care providers discussed the impact that geographic differences have on the experience of family caregiving at end-of-life. Specifically, they felt that where one lives determines access to services. The most prominent differences were raised by participants working in Newfoundland and Labradord who believed that the relatively isolated location of this lightly populated province created unique challenges for families in terms of accessing end-of-life care supports compared to the rest of Canada. Several participants from this province explained that a rapidly aging population, in conjunction with the increased outmigration of the youth, has left few able bodied family caregivers to draw from for support. As an oncology nurse remarked:
"[t]he situations in our province, they [caregivers] thin out quite a bit because of migrations, and smaller family size and that kind of stuff. We have a lot of people living in smaller areas who really have nobody around them now. Or the people around them are very elderly and no better off themselves, or able to care for the person who's dying."
Those participants working in rural communities throughout Canada also identified unique challenges for caregivers associated with low populations residing across vast distances, which results in fewer resources being made available and long commutes to access needed supports. Participants from rural communities also commented on the extra costs family caregivers from these areas must endure in order to travel to-and-from urban centers to access supplies and services.
Another geographic difference that emerged from the interviews involves the place where care and ultimately death occurs, such as the hospital, hospice, or home. According to participants, the preferred place of care and death was said to differ according to each family's wishes, though generally family caregivers preferred to have the care recipient stay at home for as long as possible. Regardless of these preferences, it was noted that decisions regarding the location of care were almost always made based on the level of access to supports and the resources caregivers had to draw from. However, because of a lack of access to needed supports and resources within the home, participants felt that some family caregivers are left with no option but to move care recipients to formal settings such as a hospital palliative unit. Especially approaching the very end-of-life, participants expressed that continuous support is required and thus family caregivers who do not have resources or access to supports will need to cease providing care in the home. A palliative care coordinator explained that '…as a healthcare professional…I think there would be a lot more caregiving going on in the homes if we could support more people to caregive for their family." As such, one's geographic location in relation to supports and services plays a critical role in enabling care provision in certain environments, such as the home.
Lifecourse stage
Participants made a number of comments indicating that where a caregiver was situated in his/her lifecourse, versus her/his specific age, significantly impacted the types of supports required by family caregivers at end-of-lifee. Participants stated that care recipients are generally elderly, over the age of 80, and that it was common to find spouses providing end-of-life care, resulting in what one nurse explained as "seniors taking care of seniors." Explicitly commenting on the differences in stages of the lifecourse among family caregivers, one social worker stated that:
"…if they [caregivers] are seniors…you're going to be dealing with perhaps a caregiver who has health problems too and so may not have the physical stamina or ability to give intensive care…if the person [care recipient] has a high care need, it may be overwhelming to the spouse."
On the other hand, it was sometimes mentioned that because elderly spousal caregivers are typically retired or career homemakers, they are viewed as ideally situated to provide care because there will be no disruption to employment or income levels.
Although many end-of-life family caregivers were thought to be elderly, several participants explained that it is not uncommon for children to take on the role of caregiving for dying parents. This was thought to be concerning if the daughter/son caregiver also had a family with young children of their own to care for. It was explained that family caregivers who find themselves in this 'sandwich generation' are likely to experience conflicting familial roles, which results in particular challenges, stresses, and support needs, such as child care. Concerns were also raised regarding family caregivers from younger families where one spouse is at the end-of-life and the other is providing their care. Again, participants explained that this scenario is incredibly challenging for families where young children are involved. A broad concern regarding these lifecourse-related scenarios is that younger families were thought to be more vulnerable financially than older ones: "…with a younger family, if one of the spouses is the one who's dying and is unable to work, and it has been a two income family, that's a huge impact on the family if they're losing one income." As a result, younger families are said to require more support in terms of financial and job security: "Especially our young families, they need to know that they are going to have job security, and resources, financial resources for the time period that they're going to be off [from paid employment to provide care]." The provision of such security is muddied by the fact that caregiving at end-of-life rarely follows a predictable trajectory.
Material resources
Although 'socio-economic status' is an axis of difference often highlighted in diversity analyses, in this study participants' comments pertained mostly to the specific circumstance of access to material resources rather than the broader category of socio-economic status. Many front-line palliative care providers emphasized how variations in families' access to material resources, such as income, equipment, medication, and formal respite and home care support, resulted in dramatic differences in the caregiving experience. As one social worker said, "we say that homecare is universal [in Canada], but it's not really universal. It's based on your finances and what you're able to provide in terms of concrete help…" There are many extra financial costs associated with providing care for a dying family member in the home, such as making home renovations and purchasing, renting, and/or installing medical equipment. A palliative home care nurse commented on these costs:
"I think that caring for someone in their own home is expensive. And I don't think we look into that enough, because…they've [caregiver] taken time off from work, they don't have an income, and then they've got all these extra things that they have to get. They have to buy a walker; they have to get a wheelchair – none of that is something that we provide."
Participants were particularly concerned about families who do not have private medical insurance and therefore are required to pay in full for needed supplies and other items, which in some cases places families in great financial stress. An oncology nurse shared one of her experiences of working with a family that experienced financial hardship as a result of caregiving responsibilities:
"…I saw that disease destroy, financially ruin, people. Because before they were diagnosed with the disease, they had a bit of money. They were…middle class people with a little bit of money in the bank. And by the time the person affected with the disease ended up dying, the family had nothing left… When the person died, they couldn't afford to take the body home…and that was the only time they received a bit of help, was when they had to go to social services to get the body home. It's devastating."
Participants pointed out that financial pressure may place increased stress on family caregivers, thereby negatively affecting their health.
Some family caregivers' inabilities to access material resources, particularly medications, respite care, and transportation, results in inequitable care outcomes. For example, a palliative care coordinator said that "quite often patients are suffering because they [caregivers] don't have the money to buy medications." Such a situation may not only be disheartening for the care recipient, but also the caregiver who is unable to manage pain and relieve distress. Access to in-home respite support was also believed by many participants to be a resource that greatly affected caregivers' abilities to manage their role through mitigating the risk of caregiver burnout. With regard to family caregivers' need for respite support, a social worker stated that "if we're sending people [care recipients] home with the expectation that they're having 24 hour care, it's only realistic if that person [family caregiver] gets some time to breathe as well." Many participants commented on how unavailable this support generally is for Canadians, not only due to costs, but also to geographic issues whereby in many rural and remote areas respite support is simply not an option. Furthermore, access to transportation was discussed as being a material necessity for family caregivers in order to take care-recipients to appointments. However, not all caregivers have reasonable access to transportation, let alone a vehicle that can accommodate the space and comfort requirements of a care recipient.
Our analysis of 50 interviews with front-line palliative care providers reveals that acknowledging diversity among Canadian family caregivers is an important aspect of understanding the caregiving experience. Apparent is that front-line palliative care providers observed cultural, gendered, geographic, lifecourse stage, and material differences between family caregivers, shaping the types of experiences caregivers have as well as the supports they have access to. These axes of difference also reveal segments of the caregiver population that may be particularly vulnerable to experiencing inequities with regard to accessing needed services and resources. These groups include non-English or non-French-speakers, cultural minorities, rural residents, employed caregivers who are women, caregivers who are men, caregivers with young children, and those who do not have or are unable to purchase meaningful material supports. Given that having adequate access to services and resources serves to lessen exposure to caregiver burden [38,39], it is quite likely that these groups also have increased risk of negative health outcomes as a result of taking on a caregiving role. Furthermore, vulnerability to caregiver stress, burden, and negative health outcomes may be amplified for those whose lived reality overlaps multiple segments of these particular population groups. Without considering diversity, such patterns in vulnerabilities and inequities would simply be overlooked, and ultimately, continually reinforced [33].
Implications for the CCB
From a policy perspective, this analysis demonstrates why diversity needs to be acknowledged in policy circles, including in relation to the CCB, and seeks to counteract single dimensional approaches for understanding family caregiver needs at end-of-life that simply cannot account for inequities. As noted above, the objective of the CCB program is to provide employment security with basic financial assistance for eligible family caregivers during the last eight weeks of a care recipient's life. A number of implications emerge from the findings of this critical diversity analysis for the structure of the program and the way in which it is administered. Importantly, in reviewing these implications, summarized in Table 4, it becomes clear that the solutions for improving supports for end-of-life family caregivers in Canada do not rest solely on adjusting the CCB program. Due to the complexity of death and dying, there is a need for multiple governmental sectors (e.g., Medicare, employment insurance, family allowance) to become involved in better supporting end-of-life family caregivers at multiple levels (e.g., local, provincial, and national) in order to address the complex needs of families experiencing death and dying. This multi-sectoral approach, however, requires coordination, a shared vision, and political commitment from leaders and champions in order to be successful [40].
Table 4. Implications for the CCB program
The CCB is commonly thought of as a positive step towards broadly meeting the needs of Canada's end-of-life family caregivers [26]. However, this analysis has shown that individuals who fall within this broad demographic are likely to experience barriers to accessing this support. For example, though Canada is renowned for its multicultural landscape [41], formal (i.e., government-sponsored) information about the CCB and its application forms are only available in English and French [23]. This leaves front-line palliative care providers and community groups to play a significant role in informing groups such as new immigrants and linguistic minorities about the program through websites and fact-sheets. However, interviewees clearly pointed out that informational access to the CCB can be hindered if front-line providers are unable to communicate well enough with family caregivers to assess their needs, which may result in them not informing families of the CCB's existence or assisting them with completing the application form. Here, cultural brokers and translators may be able to play a valuable role.
As we have noted above, research has repeatedly demonstrated that women are most likely to become family caregivers at end-of-life in Canada; however, it is also women who are least likely to be eligible for the CCB. In Canada, women generally make up the majority of stay-at-home parents and part-time workers and thus are less likely than men to contribute to Employment Insurance and be able to draw upon its programs [27]. Although we might expect women to have lower uptake of the CCB, program utilization data show that they do indeed make up the majority of CCB claimants [30]. These same data also show that women receive on average lower weekly benefit payments than men [42], which is a direct result of women applicants having more limited salaries. These utilization data point to an interesting set of paradoxes: while women are generally less likely than men to be eligible for the CCB due to having more limited labour market participation, they are actually more likely than men to receive the Benefit; and, while men are likely to receive greater financial support while on the CCB- due to higher salaries, they are less likely than women to actually use the program and thus may be underutilizing the Benefit relative to their labour market participation. Such circumstances create clear implications for the CCB, the solutions for which extend well beyond the scope of the program.
The interviews revealed that geography, particularly differences in access to services and the presence of family caregivers between places, is a significant axis of difference in the caregiving experience. For example, interviewees reported that Newfoundland and Labrador's rapidly aging population and concurrent high rates of youth out-migration has generally resulted in the elderly caregiving for the elderly. This demographic trend has been well established in statistical reports [43]. Although this region is in great need of caregiver support, the CCB as it is currently administered does not cover nor supplement the cost of travel for family members to relocate for care provision. Furthermore, at a more localized level, travel within or between communities to gather supplies and access medical appointments is also not covered by the program. Such realities may require family caregivers in these locations to use CCB program monies to offset travel costs.
Participants viewed one's lifecourse stage to greatly impact the caregiving experience, including a caregiver's need for particular types of support such as the CCB. Importantly, participants commented that younger "sandwich generation" caregivers are more likely to be participating in the workforce while providing care, thus heightening their financial vulnerability. As such, the CCB may be best suited for meeting some of these caregivers' needs by ensuring their jobs are secured while providing some financial assistance. Participants also explained that it was common for younger caregivers to need access to child care while providing end-of-life family caregiving. However, the CCB does not provide a child care allowance, which may result in some relying on the financial assistance of the CCB to cover child care costs rather than truly supplementing income. Because the CCB does not consider circumstances regarding the loss of dual incomes, or the shifting of child care responsibilities due to caregiving demands, working-aged family caregivers may not find the CCB to be a viable option to meet their financial needs.
Finally, many participants emphasized how variations in access to material resources, such as medication, equipment, and respite care, result in noticeable differences in the caregiving experience. Access to such resources was thought to impact caregivers' quality of life as well as decisions regarding where care should take place. As it is currently administered, the CCB provides relatively limited financial assistance (up to a maximum of $485 per week). This minimal level of income support has been viewed by many as major deterrent for caregivers to utilize the CCB [25,27,44]. The financial costs associated with purchasing equipment, supplies, and medications can be relatively high for some caregivers, and the financial assistance provided by the CCB may not be meeting their financial support needs. Moreover, it has been found that caregiving can potentially enhance the risk of poverty as it contributes to high levels of stress and associated negative health outcomes, which in turn affects caregivers' abilities to return to paid employment [45].
Intersecting differences – a future research direction
It is important to explicitly recognize that every caregiving situation is different and that every caregiver has unique concerns and difficulties [46]. However, dominant approaches to caregiving research and policy to date have failed to adequately acknowledge issues of diversity or what diversity in the experiences of caregivers might mean for existing programs and/or services, or for advancement in policy. In this research, we have moved beyond many other studies by explicitly teasing apart the axes of difference reported on by participants and organizing them into separate categories for the purpose of conducting a critical diversity analysis. Advancing feminist thought, and keeping in line with intersectionality scholarship, however, we do recognize that these axes of difference are inherently linked, which in turn structurally shape one's social/physical location and thus influence one's caregiving experience. Reflecting this complexity, intersectional scholars (for example, see [36,47,48]) observe that no single dimension of diversity or difference should be given favour but that, instead, researchers should consider simultaneous interactions between these dimensions [47-49]. In other words, it may not be a caregiver's experience as a woman that exposes her to the most significant inequities, even though this axis tends to receive the most attention in the caregiving literature [13-16]. Rather, it may be her collective inability to speak English or French, residence in a rural community, and lack of access to appropriate medical equipment intersecting with gender that determine support needs and in particular, whether or not programs like the CCB are effective in meeting them. Following from the current analysis, there is a need for caregiving research to examine and articulate such intersections among axes of difference in order to adequately consider and address existing inequities as well as the underlying structures of power that reinforce them.
Our findings shed light upon some major differences that exist among family caregivers that can dramatically shape caregiving experiences and access to meaningful supports. However, this is simply the first step and this analysis serves to signal the need to further pursue this line of inquiry, including the application of social justice approaches, in future caregiving research and policy creation. Attention to diversity and inequity is slowly beginning to emerge in the caregiving literature (see [50-55]). For example, in their examination of foreign domestic care workers, Hsuing and Nichol [53] argue that the complexity of the experiences of these workers "cannot be fully captured simply by examining any single axis of their identity; it requires an examination of the intersections of race, class, and gender" (p.773). To the best of our knowledge, intersectionality has yet to be applied to the context of end-of-life caregiving. Based on our findings and the traction they hold for more general examinations of care work, an intersectional analysis shows great promise in advancing knowledge in relation to end-of-life caregiving, and in the longer term may provide evidence that will be the basis of much needed critical challenges to Canadian policy in this area, as well as policies in other countries that rely heavily on the labour of unpaid family caregivers.
This study has three main limitations. First, we use the perspectives of front-line palliative care providers to draw conclusions about family caregivers. Although this was done purposely because front-line palliative care providers have exposure to a range of family caregivers and can comment on this, the analysis misses out on the experiential comments that can be offered by family caregivers themselves. This serves as an important direction for future research. Second, our reliance on phone interviewing means that we were unable to observe nuances of facial expression and other subtleties that in-person interviewing allows. However, we used phone interviews because they are cost effective, particularly given our cross-country sample, and are known to yield reliable data [56,57] and so we are not concerned that this limitation has had a negative impact on the analysis. Third, as there is no population- or national-level data that characterizes the full spectrum of front-line palliative care providers, we cannot know how representative our participants are of this health worker group. As our study is qualitative in nature, we do not actually seek representativeness to achieve overall generalizability, but rather the transferability of the findings. Given this, the lack of population- or national-level data did not serve as a true limitation in our research.
Through conducting a critical diversity analysis, a nuanced portrait of the complex realities experienced by Canadian family caregivers within the context of end-of-life care has been revealed in this article. It is important to note, however, that this analysis considers front-line palliative care providers' perspectives, and not those of the family caregivers themselves, and so should be taken as such. Yet, front-line palliative care providers have valuable perspectives regarding the diversity of families experiencing death and dying and therefore should be considered in policy-related caregiving research. While most research in this field does not explicitly consider diversity, that which does tends to focus on one or two pre-defined axes, such as gender and/or economic status and/or culture [21,58,59]. While the findings of this study point to the importance of these axes, they also demonstrate that others are also of great significance in shaping the caregiving experience, such as geography and lifecourse stage. We see these findings as a critical first step in exploring what meaningful differences exist among family caregivers and how these differences impact caregiving experiences at end-of-life. We believe that understanding these meaningful differences can inform the development of more effective and equitable policies and supports.
In this analysis we have helped to disrupt the common policy discourse that implies family caregiving is simply a gendered experience. In doing so we have provided input that not only can inform CCB improvement, but can also provide valuable insights on how policy-makers can most equitably meet the needs of family caregivers in Canada. Importantly, our findings also signal the need for a re-framing on how we view and categorize family caregivers and understand their needs. This involves recognizing that some groups of caregivers may be particularly vulnerable to caregiver burden or other negative health outcomes in addition to barriers to accessing needed supports. Finally, this analysis has helped to cast light upon the often invisible work of and hidden burdens experienced by family caregivers. Their effort, understanding, and compassion enables so many dying individuals to live out their final days with dignity [6]. It is thus imperative for us to recognize the extraordinary effort that is made every day by family caregivers who care for dying individuals with dedication and ensure that they are provided with all the means necessary to carry out this valuable work.
aIn this paper, we use the term family caregiver to refer to those family members, friends, and/or close others who informally provide care to a recipient, often without out pay.
bSmudging ceremonies involve the burning of clipped herbs, such as sweet grass, sage, or cedar to create a smoke that can be lightly brushed over one's body. This is done to cleanse one, both spiritually and physically, of any bad spirits or negative energy.
cAn analysis that offers further discussion on some of the geographic and gender differences highlighted in this article can be found in Giesbrecht et al. 2010.
dNewfoundland and Labrador is a province of Canada located on the Atlantic Coast.
eAlthough age is often related to one's experiences at various stages of the lifecourse, social experiences are not biologically determined by age, hence our decision to use lifecourse for this axis of difference.
CCB: Compassionate Care Benefit; HRSDC: Human resources and skills development Canada.
Competing interests
The authors declare that they have no competing interests.
Authors' contributions
MG conducted the participant interviews, led the thematic diversity analysis, and drafted the manuscript with ongoing input from VAC. VAC and AW participated in the design of the study and the thematic diversity analysis. OH participated in the thematic diversity analysis. All authors read, made suggested revisions to, and approved the final manuscript.
Authors' information
MG is training as a health geographer and is a PhD Candidate in the Department of Geography at Simon Fraser University (SFU), Canada. Her research focuses on exploring diversity among users of palliative care services/supports and identifying how 'place' intersects with subject positions to shape access, end-of-life experiences, and palliative care outcomes.
VAC is an Associate Professor in the Department of Geography at SFU. Trained as a health geographer, she primarily uses qualitative methods to examine issues pertaining to access to and use of health services.
AW is trained as a social geographer, specializing in health research addressing: health care services, quality of life, family caregiving, critical policy/program evaluation, and therapeutic landscapes. She currently is an Associate Professor at McMaster University (Canada).
OH is an Associate Professor in the School of Public Policy at SFU. She is the Director of the Institute for Intersectionality Research and Policy at SFU. She specializes in public policy and political theory and is an internationally recognized expert in gender mainstreaming, gender based analysis, health determinants, and intersectionality-based analysis.
We are thankful to all the participants who shared their time and perspectives with us and for the continued involvement of the Evaluation Taskforce. This study was funded by an Operating Grant from the Canadian Institutes of Health Research.
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text:
Is it hot where you are? It is good and hot here. Summer does not seem to be on its way out any time soon, though last week while I was at Hobby Lobby I did see an employee merrily putting up a Christmas tree display. But I am in no rush. I say bring on more watermelon and popsicles!
We have been thinking of new ways to cool down. And one of my kids' new favorites is playing a classic game of duck duck goose, but with a car-wash-sized sponge. Usually this ends up in a big water fight. I am okay with that.
This is my newly-turned 3-year old. He is a good sport. And yes, after having him pose for that picture I had to let him unload a sponge over my head.
We thought we'd send a little heat relief to some friends in other hot places in the form of a giant car wash sponge. What could be more instantly refreshing?
We just wrapped a piece of sturdy mailing paper very snugly around the sponge, added some postage,
and it was ready to go. Really, if you found this in the mailbox, how long would it be until you soaked someone?
and incase you'd like to see a little more, here is my favorite fun mail inspiration from the archives (or follow my 13 oz or less Pinterest board, or see it all right here):
A Disposable Camera | A Sponge | A Tube of Bert's Bees | A Wreath and Twinkly Lights | A Disguise | School Supplies | A Pair of Flip Flops | A Big Ball | Plastic Eggs 1 and 2 | Silly Putty |Shovel & a Bucket | Ribbon Sticks | Bubblewrap Hopscotch | Fan Mail | Waterbottle Care Package | Bouncy Balls | Sticky Notes | Jr Mints | Frisbee | Mini Banner and Mini m&ms
find postage rates for happy mail right here along with other mailing details
{ 11 comments }

subset: commoncrawl


text:
Walter H. and Leonore Annenberg�s Sunnylands estate. / Richard Lui, The Desert Sun
In anticipation of the meeting of President Barack Obama and President Xi Jinping at Sunnylands, The Desert Sun conducted a live online video roundtable discussion on Chinese issues from on Wednesday at mydesert.com.
Participants were Wes Ahlgren, chief operating officer of the Coachella Valley Economic Partnership, veteran newspaper editor Dennis Britton and Tom Freeman, Riverside County's foreign trade commissioner.
SUMMIT AT SUNNYLANDS: More information about President Obama's visit and historical pictures/video of the Annenberg estate.


text:
Film: Arsenic And Old Lace
Inexact title. See the list below. We don't have an article named Film/ArsenicAndOldLace, exactly. We do have:
- Funny/Arsenic And Old Lace
- Main/Arsenic And Old Lace
- Theatre/Arsenic And Old Lace
- Trivia/Arsenic And Old Lace
- YMMV/Arsenic And Old Lace
If you meant one of those, just click and go. If you want to start a Film/ArsenicAndOldLace page, just click the edit button above. Be careful, though, the only things that go in the Main namespace are tropes. Don't put in redirects for shows, books, etc.. Use the right namespace for those.


text:
My husband is recently very stressed out with his work, so he started drinking heavily, got very drunk and sometimes I've been called up by the pub manager to take him home coz he involve in fighting in the pub. He's a strong and muscular man. I'm 3 months pregnant and I'm worried about many issues currently.
You should be worried. Tell him he needs to get help because a baby is coming and that behavior isnt acceptable. Stress isnt an excuse. GL
He promised to search for help. I told him that I'm worried that we will lose our unborn one day
You are afraid that he would be violent with you and his family?
All you can do is suggest help, and if he doesn't get it, then you have choices to make. Is it safe to raise your child in this environment? It doesn't sound like it. And you can't force him to stop.


text:
News & Events
PRESS RELEASEThe Indonesian Tourism and Creative Economy Ministry will hold Indonesian Coffee Festival
Jakarta, 28 August 2012 - The Indonesian Ministry of Tourism and Creative Economy along with Gianyar-Bali local Government, Ubud Kingdom, Special Coffee Association Indonesia, Coffee Community and Coffee Blogger will be holding The Indonesian Coffee Festival (ICF) in Ubud Bali at 15-16 September 2012.
The second ICF this year were meant to make Indonesia as the leader of the world's coffee industry and making coffee agrotourism as one of Indonesia's new potential tourism destination, also developing the creative economy sector from the coffee culinary as a lifestyle.
"Through the Indonesian Coffee Festival, our potentially leading coffee products will be more widely known by the society and hopefully this festival will bring mutual benefit between the upstream and downstream community of coffee farmers, traders, sellers, exportirs, and coffee lovers domestically and internationally" says Vice Minister of Indonesia's Ministry of Tourism and Creative Economy Dr. Sapta Nirwandar at the ICF press conference at Sapta Pesona building the Ministry office, Tuesday (28/8).
Sapta Nirwandar also said that Indonesia as one of the biggest coffee country in the world is well known for its coffee flavour and aroma and also the uniqueness in serving coffee. "This uniqueness is Indonesia's potential in the eye of the world, Because of this, we need to promote and enhance our Indonesian coffee brand such as 'Kopi Luwak' and 'Kopi Tubruk' to be more popular in the community".
ICF's data shows that there are 100 billion cups of coffee or 165.9 tons of coffee beans were brewed every day all around the world. Meanwhile Indonesia demands aproximately 121.107 tons of coffee per-year. These demands were fulfilled from Indonesia's coffee farmers that are spreaded all around the archipelago.
ICF recorded that Indonesia has 1.3 million hectares of coffee plantation at Aceh, Sumatera, Lampung, West Java, Center Java, Bali, NTT, Sulawesi and Papua. Most of this region have developed a coffee agrotourism destination that are widely interest domestic and international tourists.
ICF 2012 in Ubud-Bali will introduce Indonesia's finest coffee beans from Aceh, Flores, Java, Lampung, Bali, Luwak, Toraja, and Papua which each of them has their own uniqueness and different flavour. This uniqueness will be a culinary point of interest for people.
Bali Deep 2012 - "Rebirth"
Over a year has passed since that day in March 2011. The day a disaster of unprecedented magnitude struck Japan. With unmatched resolve, the people in the areas affected are gradually rebuilding their lives.
In the midst of such a crisis, adequate support and assistance wanting, their tenacity is striking.
The dignified strength of the Japanese spirit is keenly felt. The "Prayer" received from people around the world immediately following the disaster helped us immeasurably in our regeneration. Bali Deep 2012 takes these well wishes and sends them back to the world and forth to the future.
Bali Deep 2011 - "Silence your mind and listen to your heart."
Time and space continues to change and the whirl of information grows bigger as it draws us in.Our perception are always leveled through our environment and information, and are symbolizedas communication tools. Globalization became convenient and fast by standardizing our senses in this system of the city. Will there ever be a moment where we will stop thinking, if we continue
to parasite in this city?
Originally, perception meant "seeing" and "listening", and to recognize what something is. Seeing "red" is a sense. Seeing "a red apple" is a perception. Seeing a red color is a primitive sense. After seeing a red apple, if one feels "it looks good" or "it looks sour", it will only come because of our personal perception. Perception can change depending on the individual, but sense is something we all have.
If we see a crimson twilight sky that we rarely see in Tokyo and we feel "beautiful", isn't it a primitive sense that we all humans possess? That moment, you can feel yourself freed from "thinking" and only "feeling".
We think that it is time to lose that border you have had with your perception, and just "feel". We hope to recall your primitive senses by making you realize your five senses. We aim to express the primitive senses that we all humans possess, no matter of boundaries, reces, cultures, or religions, through "Bali Deep".
Opening party26 November 2011The Royal Pita Maha
27 November 2011 - 3 January 2012
Museum Puri Lukisan Ubud - Bali
For more information and reservation to join the opening party please contact:
- email@example.com
- firstname.lastname@example.com
Book it to enhance your holiday. Special price available at only Rp. 235.000 net/paxBenefits:- Attending the opening party (laser show, dinner and Balinese dance performance)- One time visit to the Bali Deep Exhibition at Musuem Puri Lukisan (voucher/coupon will be provided)- 30% discount for any treatment at Royal Kirana Spa & Wellness (voucher/coupon will be provided)
Collaborate in this Bali Deep 2011 exhibition are:
Japanese Artist
Koji Ikuta /Visual Artist
Kyoko Kakehashi / Visual Artist
ZIGEN /Photographer
Toshihisa Mafune /Sound Producer
KEIKO MANDERA /Painter
Tadayoshi Hashimoto /Photographer
Nobutaka Motiduki /Graphic
Seibo Nishino /Japanese Painting Artist
Kiyoshi Naruse /Artist
Yusuke Okubo /Media Artist
Wataru Igarashi /Composer/Producer/DJ
Michiyo Abe /Coppersmith
Bali ArtistTjok Gde Raka Sukawati /Painter/Word CarverAriasa I MadeAris SarmantaArka I MadeBeseg I Gusti MadeDana I KetutDiatmika I Gusti PutuDiksa I WayanDwiarta I MadeEka Wahyu Pratam WayanGama I WayanIndia I MadeLanus I MadeMiarta I WayanMurka I WayanMuliasta I KetutMuryasa I Gusti NguahOka Ariyoni GustiNurbawa I NyomanOcen I Made AyuPunia I MadeRai Diadnyana I GustiReta I NyomanRumantara I WayanSaba I NyomanSaba I NyomanSana I NyomanSana I KetutSeden I MadeSuarbawa Eka PutrNgakan KetutSuciari Gusti AyuSudarsana I Dewa Bagus GD.BagusSumertayadnya I Dewa NyomanTembles I WayanWartayasa I WayanWibawa I Gusti Putu
SMA Negeri 1 Ubud - High Scool Students Kadek Ari AnjasmaraI Made Lanang Adi NugrahaFortunia Mendietta BlancoDepindra SaputraMade Wisnu PutraSusi Paumi
Pelebon Ceremony ANAK AGUNG NIANG RAI - (Puri Agung Ubud - August 18th, 2011)
On Thursday, the 18th of August 2011, will be held the Pelebon ceremony of Anak Agung Niang Rai of Puri Agung Ubud. She is the wife of Tjokorda Gde Agung Sukawati (1910-1978), penglingsir (head of royal family) of Puri Agung Ubud since 1931 until 1978 and widely known as "the King of Ubud".
Anak Agung Niang Rai is also the mother of Tjokorda Gde Putra Sukawati (Tjok Putra), Tjokorda Gde Oka AA Sukawati (Tjok Ace) and Tjokorda Gde Raka Sukawati (Tjok De). She also has five grandsons from these three sons.
Anak Agung Niang Rai was born in Bungbungan village, a village located in Klungkung regency of Bali around 1930. She married Tjokorda Gde Agung Sukawati of Puri Agung Ubud in January 1955.
Anak Agung Niang Rai then lived in Puri Agung Ubud and always accompanied her husband in serving the community. Tjokorda Agung was one of the most important figures in the history of Ubud. During his throne at Puri Agung Ubud, he pioneered the development of Ubud and it has made Ubud eventually became widely known as one of the art-cultural centers and a leading tourist area in Bali.
Anak Agung Niang Rai passed away at her age of 80s on Saturday the 14th of May 2011 (based on the Balinese calendar, the days was Saniscara Paing Wuku Ukir) at 8:15am. Her body then being lied down at Puri Agung Ubud. The Pelebon ceremony will be held on Thursday the 18th of August 2011 (Wraspati Pon Wuku Krulut). Thursday the 18th of August 2011 (Wraspati Pon Wuku Krulut).
The Pelebon ceremony or also known as a Ngaben (cremation) ceremony is one of the most famous Hindu-Balinese traditional-religious ceremonies. This ceremony is a form of respect from the families and local communities to Anak Agung Niang Rai.
Even though the ceremony is a cremation for the dead, but the atmosphere is always alive. Besides being a religious ceremony, the Pelebon ceremony also has become one of the most famous tourist attractions in Bali.
Pelebon ceremony is a ceremony to purify and return the elements of Panca Maha Butha (five elements of the universe that form the life) in human body (Bhuana Alit, the micro-cosmos) to the universe (Bhuana Agung, the macro-cosmos). The elements of Panca Maha Butha in the human body are:
- Pertiwi (the earth, solid matters): like the flesh, bones and teeth.- Apah (the water): like the blood, tears, saliva and mucus.- Teja (the light): like the aura and the light of eyes.- Bayu (the air, the wind): like breathe and energy. - Akasa (the space): the abstract elements (the ether) in human body
Pelebon ceremony is a Hindu-Balinese traditional-religious ceremony which had been held since centuries ago and still survived until now in the midst of changing times. In this ceremony we also can see the togetherness among the Puri Agung Ubud and the community, and among community members.
The body will depart the Puri Agung Ubud at around 12:30 pm. The body will be taken by a Bade (a cremation tower) with nine storeys and it is as high as 25 meters, accompanied by a 7.5 meters-high Lembu (a giant sarcophagus bull) and others Pelebon ceremony paraphernalia into the cremation location at the Dalem Puri Temple in Peliatan which is about 900 meters to the east of Puri Agung Ubud. The procession of this cremation ceremony is expected to finish at around 5 pm.
The Royal Pita Maha Hosts Miss Universe 2008
The Royal Pita Maha had the pleasure to host Miss Universe 2008, the stunning Dayana Mendoza, for a private luncheon at the Terrace Restaurant during her recent visit to Ubud on 24 th August 2008.
Ms. Medoza spent several hours in the company of Mr.Tjokorda Gde Raka Sukawati, owner of the resort and highly respected member of the local royal family. Over lunch Ms. Mendoza had the opportunity to relax and appreciate the timeless beauty of the natural landscape in a setting elevated high over the Ayung River valley. Discussions were focused on how the village of Ubud manages to harmoniously combine culture and tourism.
During her visit Ms. Mendoza commented to senior members of The Royal Pita Maha's managerial team that she felt inspired by the traditional Balinese architecture and nurturing ambience of property.
After lunch Ms. Mendoza and her entourage then travelled to the Ubud Palace to meet with senior members of the royal family. She was officially welcomed by the Prince Tjokorda Gde Putra Sukawati and Head of Gianyar Regency, Tjokorda Gde Oka Artha Ardana Sukawati.
Ms. Mendoza took a guided tour around the palace and was personally escorted by the Prince. She listened with great interest as the Price explained the unique attributes of Ubud and how all visitors are treated to gracious Balinese hospitality.
Updated, August 24th 2008
Museum Puri Lukisan presents Pioneers of Balinese PaintingJuly 14 – September 12, 2008Exhibitions open daily from 9:00 AM to 4:00 PM
The Puri Lukisan Museumis celebrating its 50th anniversary. First open to public on January 31, 1956, it is the oldest art museum in Ubud. To mark a half-century of accomplishments, the museum is hosting three important exhibitions during the Summer of 2008, with the grand opening on July 14 2008.
The Pitamaha ExhibitionDrawing from the core collection of the Puri Lukisan Museum, this exhibition presents an overview of the development of Balinese painting and woodcarving over the past 100 years. It exhibits works of art rooted in the Wayang tradition, through the transition to modernity in the 1930s, and its further development today.
The Ida Bagus Made ExhibitionFeaturing paintings from the estate of maestro Ida Bagus Made Poleng, one of the original members of Pitamaha and student of Rudolf Bonnet, this exhibition celebrates the visual artistry of one of the foremost painters of Ubud. In 2000, following the artist's last wish, the widow of Ida Bagus Made loaned about 100 paintings from the artist's private collection to the Puri Lukisan Museum. Fifty of these paintings will be presented to the public for the first time. This exhibition is accompanied by a catalog: "Ida Bagus Made – the Art of Devotion" co-authored by Prof. Kaja McGowan ( Cornell University, USA), Prof. Adrian Vickers ( University of Sydney, Australia), Soemantri Widagdo, and Prof. Benedict Anderson (Cornell University, USA).
updated, pitamaharesorts, 2008
Royal Cremation Ceremony Of Tjokorda Istri Putra Asmari
(Puri Agung Ubud September 7, 2007)
On Monday August 20th 2007, Tjokorda Istri Putra Asmari died in hospital of Denpasar at the age of 76 years, after suffering from a sharp decline in health over the past few months. She leaves behind her younger brother, Tjokorda Gde Agung Suyasa, a half - brother, Tjokorda Raka Kerthyasa, two half sisters, Tjokorda Istri Oka & Tjokorda Istri Rai, two children, Tjokorda Gde Budi Suryawan & Tjokorda Istri Sri Candrawati, their spouse and five grandsons.
Born in 1931, Tjokorda Istri Putra Asmari was oldest child of Tjokorda Gde Ngurah & Tjokorda Istri Muter of Puri Saren Kauh, the western wing of the central Ubud Palace. In the early '50s she married Tjokorda Gde Putu Sudharsana from Puri Saren Kangin, the eastern wing of the palace. So this is the base for all the preparations leading up to the Pelebon (Royal Cremation).
After graduating from high school, Tjok Istri Putra Asmari continued her education by enrolling in a teacher's college in Gianyar. In 1949 she began her long teaching career at the No. 1 Ubud Primary School until her retirement in 1990. Being a working mother became even more necessary when in 1975 she lost her husband. As she wanted her two children to have the opportunity of a tertiary education she continued to work hard for them to be able to graduate, while attending to family & village commitments without the support of a spouse to share the load. With the success of her offspring in their later lives, she knew that all of her struggles at this time in her life were worthwhile.
Upon Tjok. Istri Putra Asmari's death, word was spread amongst the extended family of Puri Ubud. Because of a number of temple ceremonies being held in the Ubud area at the time a decision was made that her body should remain in the ceremonial bedroom at Puri Saren Kangin, where she would be considered to still be "sleeping" until such time as a formal announcement of her death could be made. Once this announcement is made, the extended Puri family becomes sebel (unclean), so that they should attend no other ceremonies until after the cremation ceremony is over.
It was determined from Balinese calendar that an auspicious date for the cremation would fall on 7th September. By 23rd August preparations for the cremation began in earnest with the formal announcement of Tjok Istri Putra Asmari's death. The heads of the various families of Puri Ubud gathered to work out a schedule for all of the intricate preparations that precede the royal cremation. To be able to prepare for a cremation ceremony even on the simple of scale, a huge amount of labor is required. One of the first things that needed to be done was to call together all the heads of the different banjar (local councils) of the Ubud area to discuss a schedule for them assisting in all of the preparations. Five banjar are involved with the preparations of this cremation - Ubud Kelod (Southern Ubud), Ubud Tengah (Central Ubud), Ubud Kaja (Northern Ubud), Sambahan & Taman Kelod (Southern Taman). Each day since then people from the extended Puri family and banjar have come to Puri Saren Kanginto help with the preparations for the royal cremation. While the women have been helping with the preparations of the mountain of offering required for the ceremonies, the men construct the temporary platform needed, as well as cooking some of the food that makes up a part of the offerings.
Another member of the Puri family, also from Puri Saren Kangin, to be cremated with Tjok Istri Putra Asmari is Tjokorda Bagus Sudharsana, the fifth child of the late Tjokorda Gde Oka Sudharsana, older brother of Tjok Putra Sudharsana, Tjok Istri Putra Asmari's husband. Tjok Bagus died in May 2005 at the young age of 45 years, and an effigy of his body will be used in the cremation ceremony.
One of the interesting parts for visitors to Bali to view is the construction of the tall bade (tower) that will be used to transport the body from the Puri to the cremation grounds and the two lembu (bulls) that hold the body of Tjokorda Putra Asmari and the effigy of Tjok Bagus as they are cremated. While the lembu are being built just outside of Ubud & will be brought to Puri close to the date of cremation, the bade is being constructed in the outer courtyard of Puri Ubud & on the street outside the Puri.
Because of the height of the bade, a lot of the work is done in the few days leading up to the cremation on the roadway leading to the north from the central intersection of Ubud, where the procession for the royal cremation ceremony will start, heading approximately 1 km east to the cremation grounds of the Puri.
Before the actual cremations, various other ceremonies are held to prepare the soul for its departure from the world. On 27th August a procession will head towards the beji (holy spring) at Campuhan to retrieve holy water. Later that afternoon a Mesiram (bathing ceremony) will be held, where the body is bathed with water perfumed with fragrant flowers, then anointed with offerings and fine clothes, to be blessed by the pedanda(high priest) who officiates at this ceremony. People from other Puri in Bali, as well as other friends of the family are invited to witness this very important ceremony held in the privacy of the Puri. In the days leading up to the cremation many people will come to call at Puri Saren Kangin, as they will also do on the actual day of the cremation.
At around 13.00 hrs on the 7th the body of Tjok Istri Putra Asmari & the effigy of Tjok Bagus will depart to the cremation grounds in the bade specially built for the occasion. The procession to the cremation ground will also include the lembu and many offerings that are used in the cremation.
Four days following the cremation, on 11th September, there will be another very important ceremony for the journey of the soul of Tjok Istri Putra Asmari, called a Ngasti, held at Puri Saren Kangin, followed the next day by Nyegara Gunung ceremony, where pilgrimage is made to the sea (Goa Lawah) & the mountains (Besakih). These ceremonies are to lift the soul to a more purified state so that she may then find a home prepared for her within her merajan (family temple).
Please observe the dress requirements expected of people who wish to join in with a cremation ceremony:
• Wear sarong tied at the waist with a selendang (sash)
• Wear a top covering your shoulders
Ask one of the staff at your hotel if you do not have the required dress or need help in learning how to wear it properly.
Do not get in the way of anyone in the procession. As it takes off the crowd carrying bade & lembu will get very boisterous, so do not stand too near or you may get trampled.
Do not ever put yourself in a position higher than the pedanda and do not get to near the fires as the burning gets underway.
Please remember that the cremation ceremony is not put on for the benefit of tourists. It is the most important ceremony for the Balinese to provide a safe departure from the physical world for the souls of their deceased.


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Obama wins: America loses (again)
Voters turned out in record numbers on Tuesday to re-elect President Barack Obama. In doing so, they chose to double down on four years of failed Democrat policies that left America weaker and more vulnerable and will continue to do so.
Four years ago, upon Obama's first win, we predicted he would prosecute an economic policy of unprecedented and recovery-retarding taxing, spending and control that would park the private capital so vital to a robust market economy, further crippling the very people Obama promised to heal. That came to pass. Expect a second term filled with the same redistributionist and command mindset that can lead to no good end.
We also predicted a foreign policy of deferentialism that would endanger American sovereignty and invite aggression. And that came to pass, too. Emboldened by re-election, expect only damaging deals to be cut with the likes of Russia's Vladimir Putin and other thuggish foreign leaders to whom this president will continue to bow.
What we could not have predicted was how scandal-ridden the Obama administration would be. Now re-elected, expect more roguish behavior from the likes of Eric Holder, the lawless and orderless attorney general, sweetheart business deals with campaign cronies and all manner of executive orders that mock the hallmark checks and balances of republican governance.
Yes, the American electorate has spoken. And, sadly, it has chosen to make America even more of a shadow of its once grand self.
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Kentucky angler Kevin Wirth, who will be competing in his 10th Bassmaster Classic on Feb. 20-22, shows off his winning catch from the Bassmaster Elite Series' Tennessee Triumph last June. (Special to The Times)
When the 2009 Bassmaster Classic arrives here on Feb. 20-22, area outdoor enthusiasts will witness a man who has achieved what perhaps no other man in the country has accomplished.
Kevin Wirth will be competing in his 10th Bassmaster Classic, the ultimate for any professional bass fishing angler. The 46-year-old Kentucky resident also once rode a horse in the Kentucky Derby.
"That's the pinnacle in horse racing, everyone in the sport "» that's what they hope to do "» be in the Derby and/or win it. That's prestige." Wirth said while unhappily driving through the snow and ice in his home state over the weekend to attend a boat show.
Wirth will be one of 51 anglers vying for a first-place check of $500,000 when the 39th Bassmaster Classic comes to the Red River. A member of the Early Times Kentucky Whisky team, Wirth picked up fishing not long after he was thrown from a horse just eight months after riding Mythical Ruler to a 17th-place finish in the 1981 Derby won by Pleasant Colony.
Having grown up in the thoroughbred industry, a career-ending injury left him in a quandary.
"You get to the pinnacle of your career and then it all falls apart. I started riding when I was 15 and you're giving up a lot (to do that)," Wirth said. "You're giving up education, your childhood, then all of sudden it's taken away from you.
"You wake up and go 'wow, how am I gonna make a living?' At that age, you think money grows on trees, so I had a rude awakening early in life."
Now able to relate to professional football, basketball and baseball players with career-ending injuries, Wirth had some thinking to do.
"You go from the limelight to nowhere and you have to learn how to survive in life," he said. "You have to adjust to the conditions you are given. Mentally you have to wake up and be strong."
Wirth, who was a two-time national speed roller skating champion as a youth, sat around his Kentucky home wondering what the future held when a buddy called to see if he was interested in competing in a bass tournament.
"I had a couple of rods and reels and a little tackle box. I wasn't doing anything, so I said 'sure,'" Wirth said. "We never caught a fish, but right then, I said that's what I want to do. Everything I started doing revolved around my fishing from that point, and it worked out pretty good."
Because of his early start as a jockey (he began racing as a 15-year-old), Wirth never graduated from high school and didn't attend college.
"I was engrossed in what I was doing ... building on what I had. I learned a lot of valuable lessons along the way. That's a life education, which is sometimes better than school education," he said.
Wirth has yet to win a Classic but he is close to becoming yet another million-dollar winner with $924,212.30 in career earnings. He hasn't fished on the Red River since the October 2001 Louisiana Tour Pro event in which he finished 28th with21.7 pounds. Davey Hite won that competition with 41.8 pounds.
"I pulled a bonehead deal on the first day. I made a bad decision and I was way back, although I came back the next two days and got a check," Wirth said.
He did visit the river for several days in early December before the river went off limits to the Classic competitors.
"I gave myself plenty of time to see what it would take, how the fish would do in different conditions in February, but everything was on speculation. It got so blustery cold, windy and stuff, one day that I didn't get on the water," Wirth said. "I didn't want to go beat my brains in, so I didn't fish much. I just did a lot of looking. I even got out on the banks and did a lot of walking."
Deion Sanders is the only man to play in a World Series and a Super Bowl
That makes Wirth's accomplishment of reaching the top in two professional sports comparable.
"Sometimes I sit back and try to figure out what I've really done with my life. And it's not until those days, that I go man, 'I've done a lot,'" Wirth said "I've been very blessed and very fortunate to do those things, as well as the things that go with it.
"I like to be a good person, treat everyone good. If I go out of this world, I hope that's how I'm reflected upon. I really respect a lot of athletes today. The ones who come to mind are Tiger Woods or Kevin VanDam. I have a lot of respect for those type people."
When he hangs up his rods and reels, Wirth, who recently finished fourth on the amateur side of the PGA's Disney Golf Classic, plans to add yet another sport to his resume. He hopes to qualify for the Senior PGA Tour.