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]. 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 caregivers
a 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.
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: (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
Culture | the totality of the ideas, beliefs, values, knowledge, and way of life of a group of people who share certain historical, religious, racial, linguistic, ethnic and/or social backgrounds |
Gender | the manner in which a society defines and constrains the array of socially constructed roles and relationships, personality traits, attitudes, behaviours, values, relative power and influences based on a differential basis of being a ‘woman’ or ‘man’ |
Geography | the physical and social places in which various activities happen that are shaped by actions, processes, and other powerful happenings occurring both within and beyond them |
Lifecourse Stage | the sequence of socially defined events and roles that individuals enact over the progression of their life from birth to death |
Material Resources | the tangible goods and consumables and the means by which they are purchased, wherein an absence of these resources can result in material deprivation |
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. 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.
Gender
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.
Geography
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.
Endnotes
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.
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.
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.