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 ]. 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.
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. Due to the complexity of death and dying, there is a need for multiple governmental sectors e. This multi-sectoral approach, however, requires coordination, a shared vision, and political commitment from leaders and champions in order to be successful [ 40 ]. 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. 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. 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: 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. 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 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. 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.
It is important to explicitly recognize that every caregiving situation is different and that every caregiver has unique concerns and difficulties [ 46 ]. 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. 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 ].
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 ].
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. 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 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.
This is done to cleanse one, both spiritually and physically, of any bad spirits or negative energy. Human resources and skills development Canada. 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. 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: 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. National Center for Biotechnology Information , U. Int J Equity Health. Published online Nov 1. Received Jun 21; Accepted Sep This article has been cited by other articles in PMC. Abstract Introduction Family i. Results Findings reveal that experiences of caregiving are not homogenous and access to services and supports are not universal across Canada.
Conclusions We contend that without considering diversity, patterns in vulnerability and inequity are overlooked, and thus continually reinforced in health policy. Background 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 ]. Table 1 Front-line palliative care provider participants by occupational grouping. Open in a separate window. Table 2 Employment experience of the front-line palliative care provider participants.
Years of employment experience in palliative care Number of participants Less than 1 year 5 1 to 5 years 16 6 to 10 years 12 11 to 15 years 5 16 to 20 years 5 Over 20 years 6 Total Results 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: Table 3 Operating definitions employed in the diversity analysis. Culture 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.
Gender Traditionally, and still today, the role of family caregiver is largely ascribed to women. For example, this community health care nurse explained that: Geography Several front-line palliative care providers discussed the impact that geographic differences have on the experience of family caregiving at end-of-life. As an oncology nurse remarked: A palliative home care nurse commented on these costs: An oncology nurse shared one of her experiences of working with a family that experienced financial hardship as a result of caregiving responsibilities: Discussion 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.
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. Table 4 Implications for the CCB program. Men are proportionally underrepresented among successful CCB applicants, which suggests that the program may not meet their needs Geography Travel: Lack of formal support may discourage potential or on-going family caregivers from providing care in the home when receiving the CCB Lifecourse Stage Elderly: High costs of services and supplies for caregivers without medical insurance are not covered by the CCB.
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 ]. Limitations This study has three main limitations. Conclusions 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. Competing interests The authors declare that they have no competing interests.
Acknowledgements We are thankful to all the participants who shared their time and perspectives with us and for the continued involvement of the Evaluation Taskforce. Feminist geography, the 'everyday', and local-global relations: Milligan C, Power A. A Companion to Health and Medical Geography. The changing geography of care. Exploring the implications of long-term care reform for the nonprofit sector in Ontario. Environ Plann C Govern Pol. Policy Press, Bristol; Stajduhar KI, Davies B. Variations in and factors influencing family members' decisions for palliative home care.source url
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Innovative Research Group Inc. Employment Insurance tracking survey Sage, Thousand Oaks; Fereday J, Muir-Cochrane E. Demonstrating rigor using thematic analysis: Int J Qual Meth. Women's Health Reserach Network; Thinking About Women as a Social Collective. Gender, diversity and the shaping of public policy: Affil J Women Soc Work. Can J Polit Sci. The relationship between available support, unmet needs and caregiver burden in patients with advanced cancer and their carers.
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