INTRODUCTION
Family caregivers and the support they provide have become the backbone of health systems across much of the “global north,” including Canada (Canadian Caregiver Coalition, 2009; Lilly et al., Reference Lilly, Robinson and Holtzman2012). Due to policy shifts and healthcare restructuring, friends and family members are increasingly being called upon to provide informal palliative care in Canadian homes (Canadian Caregiver Coalition, 2011; Lilly et al., Reference Lilly, Laporte and Coyte2007; Skinner & Rosenberg, Reference Skinner and Rosenberg2005). These family caregivers typically provide physical, medical, and psychosocial care, which may result in responsibilities, demands, and stresses that overwhelm some caregivers' abilities to cope (Crooks et al., Reference Crooks, Williams and Stajduhar2007; Exley & Allen, Reference Exley and Allen2007; Grunfeld, Reference Grunfeld2004). “Caregiver burdens” — the commonly experienced stresses associated with providing such care — can directly impact caregivers' physical and mental health, leading to injury, depression, anxiety, and fatigue, as well as bringing about financial problems and employment losses (Carstairs, Reference Carstairs2005; Lilly et al., Reference Lilly, Robinson and Holtzman2012; Pinquart & Sorensen, Reference Pinquart and Sorensen2006). In some cases, caregiver burden leads to complete caregiver “burnout,” which occurs when caregivers become so physically, mentally, and emotionally depleted that they are no longer able to provide care, leaving the caregiver in great distress and the care recipient at risk of institutionalization (Bialon & Coke, Reference Bialon and Coke2012; Canadian Institutes for Health Information, 2012; Lilly et al., Reference Lilly, Robinson and Holtzman2012; Melin-Johansson et al., Reference Melin-Johansson, Axelsson and Danielson2007). It is also important to recognize that stress, burden, and burnout are not experienced in the same way by all family caregivers. Their onset is shaped not only by variables such as the care recipient's health status and resulting care needs, but also by complex factors such as caregivers' access to social, material, and financial resources, or, in other words, their socio-environmental contexts (Burns et al., Reference Burns, LeBlanc and Abernethy2010; Canadian Policy Research Networks, 2009; Carlsson & Rollison, Reference Carlsson and Rollison2003; Currow et al., Reference Currow, Allingham and Bird2012; Giesbrecht, Reference Giesbrecht and Hankivsky2012; Giesbrecht et al., Reference Giesbrecht, Crooks and Williams2012; Pinquart & Sorensen, Reference Pinquart and Sorensen2006; Sharpe et al., Reference Sharpe, Butow and Smith2004). It is thus likely that family caregivers' abilities to be resilient or act resiliently in the face of stress, burden, and burnout are also shaped by such contexts, which is what we examine in this article.
Resilience is a complex concept. Much debate exists regarding how it should be understood, operationalized, and measured (Allen et al., Reference Allen, Haley, Harris, Resnick, Gwyther and Roberto2011; Bluglass, Reference Bluglass, Monroe and Oliviere2007; Luthar et al., Reference Luthar, Cicchetti and Becker2000; Monroe & Oliviere, Reference Monroe, Oliviere, Monroe and Oliviere2007). Although resilience can be thought of as a personality trait and/or outcome, it is commonly understood by scholars to be a dynamic process that encompasses positive adaptation in the face of significant adversity (Allen et al., Reference Allen, Haley, Harris, Resnick, Gwyther and Roberto2011; Bluglass, Reference Bluglass, Monroe and Oliviere2007; Luthar et al., Reference Luthar, Cicchetti and Becker2000; Masten et al., Reference Masten, Hubbard and Gest1999). This process is often associated with the capacity of a person, group, or community to prevent or overcome damaging effects (Newman et al., Reference Newman, Yates and Masten2004), such as coping with the physical, emotional, and financial stress associated with providing palliative care at home. A variety of factors that lead to an individual's capacity for resilience have been suggested in previous health research, including: (1) having mastery of one's immediate surroundings when facing life transitions (Kinsel, Reference Kinsel2005; Masten et al., Reference Masten, Hubbard and Gest1999) and (2) demonstrating self-efficacy and other similar psychosocial attributes (Allen et al., Reference Allen, Haley, Harris, Resnick, Gwyther and Roberto2011; Kinsel, Reference Kinsel2005; Masten et al., Reference Masten, Hubbard and Gest1999).
Although personal attributes play an important role in experiences of resilience, it is not solely determined by an individual's state of mind. Achieving resilience is highly complex, as this process is simultaneously being influenced by the individual and by the broader socio-environmental context in which they are situated (Luthar et al., Reference Luthar, Cicchetti and Becker2000). Although such multidimensional conceptions of resilience are being increasingly advocated (Allen et al., Reference Allen, Haley, Harris, Resnick, Gwyther and Roberto2011; Bluglass, Reference Bluglass, Monroe and Oliviere2007; Luthar et al., Reference Luthar, Cicchetti and Becker2000; Monroe & Oliviere, Reference Monroe, Oliviere, Monroe and Oliviere2007), even within the family caregiving literature in palliative care (Coon, Reference Coon2012; Monroe & Oliviere, Reference Monroe, Oliviere, Monroe and Oliviere2007), little empirical research has attempted to operationalize resilience in this way. Instead, much research focuses on the psychological characteristics of the individual while examining only one aspect of resilience at a time (Coon, Reference Coon2012; Diehl et al., Reference Diehl, Hay and Chui2012). Therefore, knowledge remains limited regarding how resilience is achieved in real lived contexts, including by palliative family caregivers in the homecare setting. Given the desirability of facilitating positive adaptation and mitigating burden/burnout among this group (Parliamentary Committee on Palliative and Compassionate Care, 2011), obtaining such knowledge is certainly desirable.
Much palliative caregiving literature is focused on caregiver stress, burden, and burnout. At the same time, however, there is a growing awareness of the fulfilling and positive aspects of caregiving (Armstrong & Kits, Reference Armstrong and Kits2001; Hankivsky, Reference Hankivsky2004; Lilly et al., Reference Lilly, Robinson and Holtzman2012). Building on this awareness, we explore in this article the multidimensional aspects of palliative family caregiver resilience using a qualitative case study approach. More specifically, we ask: What socio-environmental factors facilitate Canadian palliative family caregivers' capacities for resilience in the home setting? Recognizing that resilience is complex and multidimensional, we divert attention from the more commonly researched individual-level factors to focus on exploring the ways that family caregivers' socio-environmental positioning may shape their care choices, opportunities, and outcomes, and thereby capacities for resilience. Gaining an understanding of resilience from this perspective is useful to healthcare providers and administrators because of the increasing reliance on family caregivers and the subsequent need to understand how to support them, for example, by facilitating resilience, so that they are able to fulfill this valuable role at minimal personal cost.
METHODS
Study Overview
This secondary analysis is drawn from a larger ethnographic study that aimed at exploring how “family empowerment” is enacted within Canadian homecare nursing in the palliative and chronic care contexts using a critical standpoint perspective (Funk, in press; Stajduhar et al., Reference Stajduhar, Funk and Wolse2011). Our interdisciplinary research team was comprised of academics as well as Master's-trained clinical nurse specialists who work in homecare. The team worked collaboratively throughout the processes of design, implementation of recruitment strategies, and data collection.
Data collection took place from March 2010 to June 2011, during which time triads of homecare nurses and their clients (informal caregivers and care recipients) were sought to participate in the study. Seventeen homecare nurses from six homecare offices in the Canadian province of British Columbia agreed to participate. Participation of homecare nurses involved recruitment of their clients for participation and having a researcher observe their interactions within the home environment. Participating nurses were informed to recruit family caregivers and care recipients whose health, they believed, was stable enough to allow for multiple consecutive visits.
In total, 16 families agreed to participate in the study, of which 11 care recipients were palliative and 6 chronic. This analysis is based upon the extensive fieldnote data collected by observing participating homecare nurses during their visits to participating palliative clients' homes. Researchers were directed in the collection of their fieldnotes through use of an observational guide. Where possible, families were observed during multiple homecare visits. Additionally, semistructured interviews were conducted with all three participant groups (homecare nurses, family caregivers, and care recipients) and transcribed verbatim.
Overall, there were more than 75 hours of observational fieldnotes and 11 interviews with homecare nurses, 13 interviews with family caregivers, and 3 with care recipients. Due to busy nursing schedules, the unpredictability of palliative care, and the delicate and emotional nature of death and dying, we were unable to conduct interviews with all participants who were observed. For example, some care recipients were either not well enough or died before interviews were conducted. Consent was obtained from all those who agreed to participate in the study. Prior to data collection, ethics approval was obtained from university and health authority ethics boards.
During observations and primary analysis of the larger study, it became apparent that resilience among caregivers was a major theme. As such, we set out to perform a secondary analysis that diverged from the larger study's original objectives in order to focus more intensely on this particular theme (Heaton, Reference Heaton2008). The secondary analytic process began by reviewing all fieldnotes and transcripts for the palliative care triads who participated in the study (n = 11). There was agreement among the authors that various levels of resilience were evident from the data, and also that this resilience seemed to be shaped by participants' observed socio-environmental contexts. Following this, the palliative family caregiving literature about resilience and broader resilience literature was reviewed.
A qualitative case study methodology was employed, which is well suited to investigating such complex multidimensional issues as resilience at greater depth (Hammersley, Reference Hammersley, Lewis-Beck, Bryman and Liao2007; Stake, Reference Stake1995). Case studies aim to capture the uniqueness and complexity of a single case within its context to gain a better understanding of lived experience (Hammersley, Reference Hammersley, Lewis-Beck, Bryman and Liao2007; Stake, Reference Stake1995; Winslow, Reference Winslow1998). A selection process is necessary in order to determine those cases that are most representative of the research issue at hand (Stake, Reference Stake1995). Thus, through review of the 11 palliative cases, the authors collectively confirmed that 2 particular cases were best suited to provide evidence for resilience.
Analytic Process
The fieldnotes and interview transcripts associated with the two selected case studies were reviewed in depth using an “intersectionality lens” to identify aspects of the observed socio-environmental context to facilitate resilience. An intersectionality lens acknowledges that human lives cannot be reduced to a singular category or social location (e.g., being a woman) but recognizes that real lived experiences are more complex. Intersectionality aims to explore these simultaneous interactions and the combined impacts of multiple social locations and structural processes (e.g., gender, race/ethnicity, class) on the creation and perpetuation of health inequities (Hankivsky et al., Reference Hankivsky, Cormier and de Merich2009; Reference Hankivsky, de Leeuw and Lee2011). Thus, intersectionality not only aims to identify what multiple variables are important but also how they relate and interact within specific contexts (Hankivsky et al., Reference Hankivsky, Grace, Hunting and Hankivsky2012). As such, this approach is well suited to explore complex lived experiences of resilience among palliative family caregivers using a case study approach. Coding was informed by an intersectionality lens and undertaken using NVivoTM, with data pertinent to emerging socio-environmental factors being extracted from the transcripts and stored in code files. The coded data were then reviewed extensively and themes regarding socio-environmental categories identified. These findings were then compared to the existing resilience literature to assist with interpreting their significance.
FINDINGS
Observations of both palliative care triads focused on here spanned multiple homecare visits (case study 1, four visits; case study 2, five visits). Most visits occurred with the care recipient, family caregiver, and homecare nurse present. Separate one-on-one interviews were conducted with family caregivers and homecare nurses for each case. Interviews with the care recipients, however, were not conducted since death had occurred prior to their participation in this aspect of the study. In the following section of this paper, we present the two case studies, drawing together the collected interview and observational data while focusing on the caregiver. Following this, the findings from our thematic analysis are presented. In order to protect anonymity, pseudonyms are used throughout, and some identifying details have been altered. Verbatim quotes are enclosed within quotation marks.
Case Study 1: Julia's Context
Julia was a 64-year-old English-speaking Canadian citizen from the majority culture and the primary informal caregiver for two very close friends of hers, Alex (96 years old) and his wife Grace (85 years old). Alex was dying of prostate cancer and had deep vein thrombosis in both legs. His wife Grace had carotid stenosis, a pacemaker, and was beginning to experience symptoms of dementia. Julia was not related to Alex or Grace but had developed a deep relationship with them through her husband William, who at a young age had moved in to live with them. Alex and Grace owned a moderately sized, three-bedroom detached home in a community situated at the edge of an urban area. Their house was located close to services and amenities, enabling convenient access to their material needs. The house was also built with a basement suite, which allowed Julia and William to eventually move in to provide care for Alex and Grace.
The development of Julia's caregiving role evolved rather slowly over a period of five years. It began in 2006, when, cognizant of her mother's dementia, Alex and Grace's daughter asked Julia to begin accompanying Grace to her doctor's appointments in order to keep her better informed about both what the doctor said and her mother's condition. Julia was well positioned to take on this role as she held a high level of informal medical knowledge due to her mother, aunts, and uncles all being public health nurses or medical doctors. She also owned a vehicle, and her part-time employment provided a great deal of flexibility, allowing her to work mostly from home. Although Alex and Grace had four adult children of their own, three were unwilling to take an active role in their parents' caregiving due to living out of province, other existing personal commitments, and/or personal preferences. Only their one daughter, Maria, who lived out of province, provided some long-distance care and support.
Recognizing Grace's need for direct personal care, Julia became the primary caregiver with her husband William's assistance. Although Julia provided personal care for Grace and assisted with tasks such as medical management, William assisted Julia with cooking and cleaning for Grace and Alex and helped to drive Grace to and from her medical appointments. However, this support was relatively sporadic as William's employment frequently took him out of town for long periods of time, leaving Julia to cope on her own. Two years later, in 2008, Alex fell ill, so Julia and William began accompanying him to his doctor's appointments as well. When Alex was diagnosed with prostate cancer and developed kidney failure, Julia also became his primary caregiver, administering his medication and providing physical care. At this time, Julia began receiving formal nursing and community support to provide care in the home. It was observed that Julia had a heightened ability to handle the complexities surrounding frequently fluctuating medications and schedules, especially considering she had to administer medications for both Grace and Alex. During homecare nursing visits, Julia further demonstrated her capability by frequently reporting to the nurse how she was independently identifying and responding to particular medical issues as they emerged. Rather than feeling overwhelmed with this aspect of caregiving, Julia responded well and commented that she felt confident in her abilities and had a natural propensity for learning about and managing complex systems, stating. “I'm interested in how it works.” However, caring for both Alex and Grace, the demands of Julia's caregiving role escalated to the point that Julia and William decided to move into the basement suite of Alex and Grace's home in order to be better situated to provide full-time care.
While Alex and Grace's health declined, Julia's caregiving demands increased substantially. Although they received formal home support each day, Alex and Grace required care 24 hours a day. The home support hours allowed Julia time to contribute toward her paid employment. Thus, when Julia was not formally working from home, she was caregiving and had little or no respite time. Julia had remarked that she “was getting more and more stressed because [she] was trying to cope inside this schedule with no help from family members.” However, recognizing her need for more support, Julia contacted Alex and Grace's daughter Maria, who responded to Julia's call for help by providing more support over the phone and also making trips with her husband to directly assist with physical care.
Complex family dynamics created a taxing environment for Julia in carrying out her caregiver role. Julia described Alex as “very difficult to deal with,” and as such, his children, with the exception of Maria, were reluctant to become involved with the physical aspects of providing his care. Each of his children, however, often voiced their differing opinions to Julia regarding how this care should be provided, sometimes resulting in strong disagreements not only between siblings but also between the children and Julia. This atmosphere resulted in a very stressful caregiving context for Julia; however, she often took these disagreements in stride, feeling confident in her own ability to make the correct decision regarding Alex and Grace's care.
In January 2011, Alex died peacefully at home surrounded by friends and family members, just as he had wished. Despite the demands of caregiving and challenging family dynamics, Julia demonstrated resilience as she was able to move past the obstacles to providing care she encountered to successfully provide Alex's care until the moment of his death, while continually caring for Grace. Throughout her participation in the study, Julia maintained a cheerful demeanor and often enthusiastically shared examples of her ability to overcome the challenges she faced as a caregiver.
Case Study 2: Claire's Context
Claire was a 79-year-old English-speaking Canadian citizen from the majority culture and the primary caregiver for Colin, her husband of 62 years. He was 82 years old and had been diagnosed with lung cancer that had metastasized to the sternum. At the beginning of their participation in the study, Colin's prognosis was unknown, but within a week he was deemed palliative. Colin was also diabetic, had one artery 100% blocked, and was beginning to show signs of dementia. Claire had no known health problems, aside from some hearing loss for which she used a hearing aid.
Together, Colin and Claire lived in a newly built independent living home in an urban area. They had moved there a few years before from a more rural area in order to downsize their living space and be closer to amenities as well as to their daughter, who lived in the city. They had four other children who lived farther away. Claire had remarked that she felt safe and comfortable living there and liked that she could walk to many of the services they needed. They had a car and Colin loved to drive, but Claire herself never learned. Reflecting a traditionally gendered relationship, Colin looked after all finances for the household, and Claire stated that money was “something I spend, and that's all I know.”
At the beginning of their participation in the study, Colin was relatively independent and administered his own medications. He was also physically strong enough to walk and move about on his own without assistance. However, within a week he quickly became weaker and began to require assistance walking, so a walker was purchased. Homecare nursing visits became more frequent at this time, offering Claire the medical guidance and support she needed to keep Colin at home. They purchased bath support bars and had them installed to assist Colin while he bathed.
Colin's strength continued to rapidly decline, and he began to require assistance to stand or move. Claire began to provide this physical care for Colin but quickly recognized that she was not physically strong enough, so she called upon their son for assistance. A seasonally employed worker who had some months off, their son was able to stay with them for the time being. He conveniently moved into an apartment suite in their building that was available for guests of residents to rent. The son helped with much of the physical lifting, while the daughter (who also lived in the city) would come to support Claire and help in providing Colin's care.
Although Colin eventually accepted receiving care from Claire and his son and daughter, he was a very proud man and found it difficult to surrender control. He insisted on administering his own medications for as long as possible. However, within a few weeks he became increasingly confused and his strength declined even further, so Claire took on this role. Claire became responsible for monitoring his diabetes and administering all his medications but found this task extremely overwhelming. Recognizing her difficulty with this task, she delegated the administration of Colin's medications to the daughter. Claire continued with aspects of care that she felt more confident in providing, including his physical/personal care and emotional support.
Within the rapid timeframe of one month, Colin went from being relatively independent to completely dependent. This resulted in a highly stressful and demanding care context; however, Claire demonstrated her ability to quickly learn and adapt to the circumstances in order to ensure that Colin's care needs could be met. Recognizing the pace of progression of Colin's decline and Claire's intense caregiving situation, the homecare nurse asked if she wanted to be connected with a social worker for support, but Claire responded, “Oh no, I have my family. I don't need that.”
One month after Claire became the primary caregiver, all five children were on site and took turns providing support for Claire and care for Colin. Together, the children rented the suite in their parents' complex to take caregiving shifts. Colin expressed to his family the wish to spend his final days at home. One week later, Claire and their children successfully fulfilled his desire and provided his care until he died peacefully, surrounded by family in their home. Despite the rapid pace of Colin's decline and her high stress and anxiety, Claire demonstrated great resilience through her relatively quick adaptation to the process of her husband dying, her ability to recognize her own strengths and weaknesses, and her ability to ask for help from others when she needed it, allowing her to ultimately and successfully provide Colin with the home death he desired. On a bereavement visit, Claire demonstrated that she found meaning in her caregiving role, proudly stating that she was able to give Colin the death he had wanted: “It was a very peaceful time.”
Socio-Environmental Factors Contributing to Julia and Claire's Resilience
Although each case conveys a unique experience, both caregivers were able to successfully care for a dying family member until death. In each case, “success” meant that they were able to provide care in the care recipient's desired setting (i.e., the home) up to the point of death without developing burnout and minimizing or mitigating signs of burden and stress. Regardless of the heavy workload and relatively minimal support received, Julia happily cared for Alex, ultimately granting his wish to have a home death, while continuing to care for Grace. Furthermore, despite the rather accelerated timeframe of Colin's dying process, Claire was able to quickly adapt and successfully provide Colin's care until the end at home, without burnout or significant burden, demonstrating resilience to this adverse situation. Both Julia and Claire's resilience was also demonstrated through their positive expressions of peace and contentment due to their abilities to fulfill their caregiving roles and give Alex and Colin the peaceful home deaths they wished for, thus finding positive meaning within this challenging circumstance.
Although personal and individual level characteristics played a major role in Julia and Claire's capacities for resilience, their narratives demonstrate that resilience was also influenced by their broader socio-environmental contexts. Thematic analysis revealed six socio-environmental factors that were found to facilitate both Julia and Claire's capacities for resilience: (1) access to social networks, (2) education/knowledge/awareness, (3) employment status, (4) geographic location of residence, (5) housing status, and (6) life-course stage. In the following subsections we discuss these contexts specifically.
Access to Social Networks
Both Julia and Claire had people surrounding them who were able and willing to offer their support and assist with some of the caregiving duties. As such, neither Julia nor Claire was isolated in their caregiving experience. Rather, after recognizing their own need for more support at particular times or with particular tasks, Julia and Claire were able to reach out to those around them for help. Julia was married and received social and emotional support from her husband William and direct physical assistance with caregiving duties when he was home from work. Julia also received support from Alex and Grace's daughter Maria, who would often phone and, near the end, traveled from out of province to offer direct support to Julia and assist with the care of her parents. Claire had her daughter, who lived in the same city, who would often come to assist with her father's care and in the end administer his medications. Claire also had the support of her son, who was able to stay with them and assist with the physical aspects of Colin's care (e.g., lifting and bathing). Access to this type of support was instrumental in Julia and Claire's resilience to caregiver burnout. Both Julia and Claire also had the support of homecare nurses who provided them with the medical guidance and support needed to fulfill their roles.
Education/Knowledge/Awareness
Both Julia and Claire were English-speaking Canadian citizens from the majority culture who were familiar with and able to access and navigate the Canadian healthcare system. Having knowledge of the English language allowed them the opportunity to seek out information they needed as well as comprehend the vast amounts and often complicated written or oral information that was given to them. Furthermore, they were able to communicate easily during healthcare interactions, allowing them the opportunity to express their needs or concerns. Being Canadian citizens from the majority culture, they not only gained access to the Canadian healthcare system, but they had experiential knowledge of how the system worked, which facilitated their navigation of it to reach out and receive the care and support they required. In Julia's case, her ability to navigate the healthcare system was also fostered by considerable informal medical knowledge that she attributed to her mother, aunts, and uncles, who had all been public health nurses or doctors. This knowledge was further enhanced by her education and natural propensity for managing complex systems, such as the healthcare organizations involved in Alex and Grace's care. In an interview, Julia described herself as being very experienced and very interested in complicated systems. Such knowledge allowed her the opportunity to make informed decisions regarding Alex and Grace's care and to act on them without having to seek out professional medical guidance each time an issue emerged. Together, Julia and Claire's educated, English-speaking status, experiential knowledge of the medical system, and resulting awareness of the services and supports available to them played a major role in facilitating their resilience to caregiving burnout.
Employment Status
Julia and Claire's employment statuses allowed them the opportunity to be at home to fulfill their caregiving duties without experiencing any employment or financial consequences. Thus, neither of them experienced the financial stress of having to take unpaid leaves from employment, nor did they have to cope with the dual responsibility of simultaneously providing palliative care while maintaining paid employment outside the home. Claire was retired, which allowed her the time and flexibility to be at home without concern for lost income, while Julia held part-time employment status but was able to work mainly from home. Thus, their employment statuses permitted them the time required to be at home without experiencing any financial and/or professional stress or consequences.
Geographic Location of Residence
Julia and Claire both lived either in, or relatively close to, large urban areas, meaning that palliative supports and home medical services were available to them — which is not the case for much of rural and remote Canada. As such, they were able to access formal homecare nursing support as well as other community-based hospice services without having to travel vast distances. Access to these supports allowed Claire and Julia to successfully provide palliative care in the home and receive the support and care they needed in a timely manner. Furthermore, the locations of their residences were within close proximity to many of the services they regularly used, providing Julia and Claire with convenient access to places like pharmacies and grocery stores. For Claire, such proximity allowed her access to the supplies she needed despite not being able to drive. Their geographic locations allowed for comfortable access, without having to endure the stress of traveling or commuting vast distances in order to acquire needed goods or services. Furthermore, Claire resided in an area where she felt safe and comfortable, as well as close to a park where she enjoyed taking leisurely walks, which provided her with a space conducive to reducing stress and thus an environment that facilitated her capacity for resilience.
Housing Status
Julia and Claire each had safe and secure housing statuses and, therefore, did not have safety concerns that other caregivers may face, or the financial stress associated with meeting mortgage or rental payments. Additionally, both caregivers lived at the same residence as the care recipient, mitigating any potential stress associated with the financial costs of travel and travel time, as well the worry associated with a possible emergency situation occurring during their absence. This housing stability also afforded them the freedom to carry out their caregiving role in a familiar environment and the ability to comfortably take moments of respite if/when the occasion arose. Furthermore, as they provided their care in owned homes, not rental suites, they had the freedom to install any required equipment or make any structural renovations they deemed necessary to meet their needs and improve the safety or comfort of the home, for example, when Claire had bathing support bars installed in their bathroom. As such, their safe, stable, and secure housing status was supportive of their resiliency.
Life-Course Stage
Julia and Claire were both in the later stages of their life course. Their lived context was one where they had no young children to care for at home. In Claire's case, for example, she had children who were independent adults who provided her with support as she carried out her caregiving role. The stage in life where Julia and Claire were situated allowed them the time and energy to devote their care provision solely to the care recipients, without having to manage and balance caregiving responsibilities between the care recipient and young children. As such, they were free from the demands, stress, and responsibilities that some other younger family caregivers may face. Finally, although in a spousal palliative caregiving relationship, both Claire and Colin were in their retirement and so did not suffer from any employment loss or financial consequences that younger families, who are still actively in the workforce and dependent upon dual incomes, may experience.
DISCUSSION
Julia and Claire's narratives demonstrate that resilience in the context of palliative family caregiving is influenced not only by individual and family variables, but also by broader socio-environmental contexts, such as: access to social networks, education/knowledge/awareness, employment status, housing status, geographic location of residence, and life-course stage. Drawing upon intersectionality scholarship, it is important to emphasize that these socio-environmental factors were not experienced in isolation, but rather were relational and simultaneously experienced (Hancock, Reference Hancock2007; Hankivsky et al., Reference Hankivsky, de Leeuw and Lee2011; Van Herk et al., Reference Van Herk, Smith and Andrew2011), together impacting Julia and Claire's capacities for resilience. For example, it was not simply because Julia's employment allowed her to work from home that she was resilient, but rather it was the combined effect of all six identified factors that each intersected to create her unique lived context, which in turn shaped her opportunities, access to resources, and capacity for resiliency. It is also important to emphasize that the six identified factors are themselves dynamic and interrelated (Hancock, Reference Hancock2007; Hankivsky et al., Reference Hankivsky, de Leeuw and Lee2011), for example, their life-course stages and employment statuses, or education/knowledge/awareness and access to social networks. It is through acknowledging these complex ways in which various factors, such as the abovementioned, intersect to shape real lived contexts that a more sophisticated understanding of caregiver resilience in the palliative context can be attained (Monroe & Oliviere, Reference Monroe, Oliviere, Monroe and Oliviere2007).
Although much existing palliative caregiving research is focused on vulnerabilities to and risks of experiencing caregiver burdens (Bialon & Coke, Reference Bialon and Coke2012; Grunfeld, Reference Grunfeld2004; Sharpe et al., Reference Sharpe, Butow and Smith2004), the present study has sought to identify those socio-environmental factors that are associated with facilitating resilience in the context of two palliative caregivers' lives. Importantly, these two areas of research inquiry are not divergent, but rather are inextricably linked in an iterative process that occurs over time and is influenced by individual- and family-level variables as well as social contexts and structures (Monroe & Oliviere, Reference Monroe, Oliviere, Monroe and Oliviere2007). In Julia and Claire's narratives, this iterative process was illustrated through the difficult moments of stress and fatigue that were experienced during the caregiving process (e.g., Julia balancing her work and heavy care schedule, Claire with administering medications), resulting in experiences of caregiver burden. However, each woman was able to acknowledge her experienced difficultly, adapt, find a solution, and ultimately overcome the challenge in order to continue fulfilling her caregiving role. As such, their narratives exemplify how resilience is an active process (Bluglass, Reference Bluglass, Monroe and Oliviere2007; Monroe & Oliviere, Reference Monroe, Oliviere, Monroe and Oliviere2007; Payne, Reference Payne, Monroe and Oliviere2007) that requires dynamic moments of adaptation throughout the complex and unpredictable dying process. The multilevel influences of resiliency were also apparent in the presented narratives. On an individual level, Julia and Claire both maintained energetic and optimistic personalities, but this simultaneously intersected at a broader level with their lived socio-environmental context, which together shape their caregiving experiences and resiliency.
Generally, critical explorations of broader social contexts and structures within caregiving research are focused on issues of burden, burnout, and inequities in accessing supports, while research on caregiver resilience tends to focus on the individual- and family-level variables. As such, the current analysis contributes toward addressing a significant gap in existing resilience-focused research. Our findings empirically demonstrate that resilience is not only shaped by socio-environmental factors, but it is also interrelated with risks of caregiver burden found in previous studies. Previous studies have attributed increased risk of caregiver burden or burnout to those who are actively in the workforce and unable (financially or professionally) to take a leave of absence in order to provide care (Bialon & Coke, Reference Bialon and Coke2012; Canadian Policy Research Networks, 2009). Other examples include studies that have found new immigrants to be vulnerable to caregiver burden (Stewart et al., Reference Stewart, Neufeld and Harrison2006), as well as those who are in the early adult stages of the life course and have young children to care for at home (Burns et al., Reference Burns, LeBlanc and Abernethy2010; Charles et al., Reference Charles, Stainton and Marshall2012). Therefore, our findings contribute an important dimension that is missing from such research by emphasizing that resilience is also influenced by such socio-environmental factors. Thus, these findings emphasize that resilience is dependent upon the opportunities that exist for caregivers to overcome challenges and develop coping strategies, which ultimately are influenced by their lived socio-environmental contexts. As such, the findings presented herein empirically contribute to contemporary theory on resilience, building upon notions that it is a complex multidimensional process influenced by numerous related variables that intersect to create either positive or negative experiences (Bluglass, Reference Bluglass, Monroe and Oliviere2007; Monroe & Oliviere, Reference Monroe, Oliviere, Monroe and Oliviere2007; Payne, Reference Payne, Monroe and Oliviere2007).
IMPLICATIONS FOR PALLIATIVE HOMECARE NURSING PRACTICE
The findings from this study suggest that informal or family caregivers of dying people are resilient despite challenging circumstances. Indeed, many caregivers in the larger study, including the two cases presented herein, demonstrated an innate capacity to “rise above” the challenges of caregiving. Contemporary understanding of resiliency suggest that resilient individuals have the capacity to adapt to adverse conditions and to develop or refine coping strategies to deal with such conditions (Allen et al., Reference Allen, Haley, Harris, Resnick, Gwyther and Roberto2011; Bluglass, Reference Bluglass, Monroe and Oliviere2007; Coon, Reference Coon2012; Monroe & Oliviere, Reference Monroe, Oliviere, Monroe and Oliviere2007). This may suggest the possibility for family caregivers to be targeted for individual-level interventions by homecare nurses that are designed to enhance caregivers' capacities to be resilient. For instance, educational interventions could be developed by homecare nursing units to provide family caregivers with the needed skills to manage caregiving at home and to alert them to local services available for support. Knowledge of the socio-environmental aspects of resiliency could also be included in homecare nurses' assessments of family caregivers in order to better identify those family caregivers who are more likely to live in contexts that would facilitate resiliency and those who may be more vulnerable. At the same time, there will be situations where individual or socio-environmental adaptations may not be able to be made and homecare nurses and other providers are cautioned against assuming that all family caregivers have the capacity to become resilient.
LIMITATIONS
First, ethnographic data are largely based upon subjective observations (Rose, Reference Rose1997; Savage, Reference Savage2000). However, our use of observational guides focused the collection of fieldnotes while conducting interviews with participants, which allowed for clarification of observed events, both of which added rigor. Second, this is a secondary analysis that asks a question which differs from those initially posed in the original study's objectives (Heaton, Reference Heaton2008). However, this analysis fits beneath the overarching qualitative/critical methodological positioning of the primary study. Also, the first two authors collected the primary ethnographic data, thus allowing for firsthand familiarity with the field contexts, which facilitated the secondary analytic process. Third, it is important to mention that the two cases do not reflect the full scope of diversity that exists among caregivers. Application of this method to a broad range of cases is necessary to further expand our understanding of the socio-environmental influences on caregiver resilience.
CONCLUSION
This analysis advances the concept of resilience toward a more sophisticated assessment of palliative family caregiving that acknowledges the broader socio-environmental context. The case studies presented demonstrate the simultaneous interactions of multiple factors that played a role in Julia and Claire's capacities for resilience, which ultimately shaped their care choices, opportunities, and outcomes, and, thereby, their capacities for resilience. This demonstration reveals how resilience at the socio-environmental level influences the foundation from which personal levels of resilience can be developed in the context of palliative family caregiving in the home.
The concept of resilience is receiving increasing research attention as we seek to understand the complexities of lived contexts and the ways that humans respond to difficult circumstances (Monroe & Oliviere, Reference Monroe, Oliviere, Monroe and Oliviere2007). Future research should continue to explore the complexity and multidimensional aspects of resilience in palliative family caregiving. Gaining a better understanding of the critical role such factors play in the process of resilience can help to improve homecare nurses' and other professionals' abilities to identify those caregivers who may be vulnerable to burnout, and also encourage the development of socio-environmental factors that lead to a greater capacity for resilience. Such knowledge can be used to inform palliative programs and policies on how to better provide meaningful and equitable support for all family caregivers.
ACKNOWLEDGMENTS
We would like to acknowledge the nurses who took valuable time from their schedules to participate in this research and those families who so generously opened their doors to our researchers. This study was funded by an operating grant awarded to Dr. Stajduhar by the Canadian Institutes of Health Research (CIHR). Dr. Stajduhar is supported by a CIHR New Investigator Award and a Michael Smith Foundation for Health Research Scholar Award.
