Catherine Ward-Griffin, PhD, RN
Oona St-Amant, MScN, RN
Judith Belle Brown, PhD
This article examines compassion fatigue within double duty caregiving, defined here as the provision of care to elderly relatives by practicing nurses. Using qualitative data from our two studies of Canadian double duty caregivers, we identified and interviewed 20 female registered nurses whom we described as “living on the edge.” The themes of context, characteristics, and consequences emerged from the findings. In this article, we argue that being both a nurse and a daughter leads to the blurring of boundaries between professional and personal care work, which ultimately predisposed these caregivers to compassion fatigue. We found that the context of double duty caregiving, specifically the lack of personal and professional resources along with increasing familial care expectations, shaped the development of compassion fatigue. Nurse-daughters caring for elderly parents under intense and prolonged conditions exhibited certain characteristics, such as being preoccupied and absorbed with their parents’ health needs. The continual negotiation between professional and personal care work, and subsequent erosion of those boundaries, led to adverse health consequences experienced by the nurse-daughters. The study findings point to the need to move beyond the individualistic conceptualization and medical treatment of compassion fatigue to one that recognizes the inherent socio-economic and political contextual factors associated with compassion fatigue. Advocating for practice and policy changes at the societal level is needed to decrease compassion fatigue amongst double duty caregivers. In this article we review the compassion fatigue literature, report our most recent study methods and findings, and discuss our conclusions.
Citation: Ward-Griffin, C., St-Amant, O., Brown, J., (Jan 31, 2011) "Compassion Fatigue Within Double Duty Caregiving: Nurse-Daughters Caring for Elderly Parents" OJIN: The Online Journal of Issues in Nursing Vol. 16, No. 1, Manuscript 4.
Key words: caregiving, nursing, family care, elder care, blurring boundaries, work-family interface, compassion fatigue, double-duty, living on the edge, context of care, critical feminist research
...we argue that being both a nurse and a daughter leads to the dramatic blurring of boundaries between professional and personal care, which ultimately predisposes these double duty caregivers to compassion fatigue. Are nurses who provide care to their elderly parents at risk of developing compassion fatigue? As the average age of nurses continues to rise in Canada (Canadian Institute for Health Information, 2006), so does the age of their parents, many of whom require support and care (Newson, 2010). How nurses and other health professionals balance their personal lives, such as caring for aging parents, with their professional responsibilities has become a priority in human resource planning amongst healthcare organizations (Chen, Feudtner, Rhodes, & Green, 2001; Phillips, Bernard, & Chittenden, 2002; Shields & Wilkins, 2005). Although the prevalence of double duty caregiving, defined here as the provision of care to elderly relatives by practising healthcare professionals (Ward-Griffin, 2005), is currently unknown, research has suggested that 30-50% of the Canadian working population provides care to elderly relatives (Martin-Matthews, 2000; Ward-Griffin, Keefe, Martin-Matthews, Kerr, Brown, & Oudshoorn, 2009). Given the aging population and an aging nursing workforce (Keefe, Légaré, & Carrière, 2007), an understanding of the risk of compassion fatigue among nurses who care for elderly relatives is particularly urgent.
Using pre-existing data from our two previous studies (Ward-Griffin, Brown, Vandervoort, McNair, & Dashnay, 2005; Ward-Griffin, Keefe, Martin-Matthews, Kerr, Brown, & Oudshoorn, 2009), we conducted this qualitative secondary analysis to critically examine compassion fatigue amongst those nurse-daughter caregivers who were identified as ‘living on the edge.’ Based on our findings, we argue that being both a nurse and a daughter leads to the dramatic blurring of boundaries between professional and personal care, which ultimately predisposes these double duty caregivers to compassion fatigue. The study findings also point to the need to move beyond an individualistic conceptualization and medical (behavioral) treatment of compassion fatigue to one that recognizes the inherent socio-economic and political contextual factors that contribute to compassion fatigue.
The MEDLINE, CINAHL, PsyINFO, HEALTHSTAR, and SocialScience Citation Index search engines were used to review the literature searching the following key words: compassion fatigue, burnout, secondary stress disorder, health professions, older adults, nursing, gerontology, and double duty caregiving. The reference lists of published studies and some gray literature (online reports) were also reviewed. The literature we reviewed included 54 articles related to compassion fatigue and caregiving that were published between 1990 and 2010. General themes found in the literature included the symptoms, along with causes and treatment of compassion fatigue among professional and family caregivers. The review is organized from broad to specific as follows: (a) compassion fatigue, (b) compassion fatigue and professional caregiving, and (c) compassion fatigue and family caregiving. We conclude this literature review by describing how research can be moved forward to fill existing knowledge gaps.
...one can experience burnout in professions other than healthcare, yet only people providing care to others experience compassion fatigue. Compassion fatigue refers to a condition that affects one’s physical, emotional, and social health and well being. Joinson initially coined the term compassion fatigue in 1992 while studying burnout amongst nurses in emergency departments. She suggested that empathic nurses who are caring for clients would be particularly susceptible to compassion fatigue. Since then most of the literature has linked compassion fatigue and burnout; some argue, however, that compassion fatigue should replace the outdated notion of burnout (Aycock & Boyle, 2009). Burnout, typically defined as the inability to cope with job stress, displays symptoms such as emotional exhaustion and reduced personal and professional accomplishments (Maslach, Schaufeli, & Leiter, 2001). Although compassion fatigue may coexist with burnout, we believe that they are related yet different constructs. In other words, one can be burned out but not experiencing compassion fatigue. Compassion fatigue is more complex than burnout. While burnout is cumulative and has a predictable course (Stewart, 2009), we agree with McHolm (2006) that compassion fatigue is more devastating and is the result of direct exposure to the suffering of care recipients rather than to a stressful work environment. One can experience burnout in professions other than healthcare, yet only people providing care experience compassion fatigue.
Some researchers refer to compassion fatigue as a secondary traumatic stress disorder observed in caregivers who absorb the traumatic stress of those they help (Sabo, 2006; Worley, 2005), or as a by product of emotional empathic connections with clients (Figley, 2002). We concur with other authors (Bush, 2009; Figley, 2002) that over-identification with, and empathic concern for the care recipient, such as an elderly parent, is integral to the occurrence of compassion fatigue, which has a negative impact on one’s emotional, physical, and social health. Thus, for the purposes of this article, compassion fatigue is viewed as different from burnout because it occurs over time as a result of intense and prolonged empathic care to people who suffer or experience trauma (Bush, 2009; Worley, 2005).
Compassion Fatigue and Professional Caregiving
The literature reviewed for this study suggests that nurses and other health professional groups may have an increased risk for experiencing compassion fatigue. These groups include social workers (Bourassa, 2009; Leon, Althorz, & Dziegielewski, 1999), genetic counsellors (Benoit, Veach, & LeRoy, 2007), domestic violence workers (Jenkins & Baird, 2002), and palliative care and oncology care providers (McHolm, 2006; Najjar, Davis, Beck-Coon, & Doebbeling, 2009). All of these helping professions share a common feature essential to the development of compassion fatigue: they tend to care for vulnerable populations, such as victims of abuse and patients with life-threatening illnesses. For example, nurses working in paediatrics (Maytum, Heiman, & Garwick, 2004; Meadors & Lamson, 2008), mental health (Taylor & Barling, 2004), and end-of-life care (Abenroth & Flannery, 2006; Aycouck & Boyle, 2008) are reported as being at risk for compassion fatigue. These nursing practice areas share a number of commonalities. Firstly, the nurses are exposed to, and care for clients who are vulnerable, such as young children. Secondly, caring for dying, dependent, marginalized, or traumatized clients is particularly stressful, especially for those nurses who care for these clients over a prolonged period of time. This exposure increases the likelihood that nurses will closely identify with the client and/or family, and ultimately absorb the trauma or suffering of those they help. Finally, another commonality of these nursing practice areas is the belief that nurses who work in emotionally stressful settings become ‘overly empathic’ and therefore are at a higher risk of compassion fatigue (Abendroth & Flannery, 2006; Najjar, Davis, Beck-Coon, & Doebbeling).
Health professionals who care for children in paediatric and intensive care, for instance, may have a higher probability of experiencing compassion fatigue both because there is often an emotional attachment to a sick child, even though this child is not the provider’s own, and also because there may be an emotional identification if the patient is similar in age, sex, or temperament to one’s own child (Meadors & Lamson, 2004). In a study of 85 paediatric clinicians, of which 70% of the sample was nurses, Meadors and Lamson sought to understand the scope of compassion fatigue using an investigator-developed Compassion Fatigue Questionnaire. They found that providers who experienced higher levels of personal stress also experienced higher levels of clinical stress and compassion fatigue. These authors identified the need to raise awareness of compassion fatigue in clinicians and to provide educational seminars aimed at reducing clinical stress. In making these recommendations they have suggested that individuals can ‘prevent’ or ‘manage compassion fatigue as they do any other medical condition.
Similarly, a qualitative, descriptive study of 20 experienced nurses who worked with children with chronic conditions (Maytum, Heiman, & Garwick, 2004) reported that an awareness of compassion fatigue helped the nurses develop short- and long-term strategies to minimize and manage compassion fatigue. In addition, the most frequently cited personal trigger that precipitated compassion fatigue was becoming overly involved or crossing professional boundaries. Although it is important to consider self-care and educational activities in managing compassion fatigue, what we believe is missing in both these aforementioned studies is a better understanding of the available resources that may decrease the likelihood of developing of compassion fatigue.
In a qualitative, narrative inquiry with 20 mental health nurses working in Australia, Taylor and Barling (2004) identified sources or causes of carer fatigue, including inadequate resources and services, as well as interpersonal problems with clients, physicians, managers and other nurses. Specifically, participants identified that the lack of staff, time to communicate with clients, and services to care for clients with mental health challenges contributed to carer fatigue. Interpersonal relationships with aggressive clients also tended to compound carer fatigue. Clearly, this research points to the importance of examining the availability of resources, such as time, staff, and services, as well as taking into account the nature of the caring relationship in these settings.
According to Abendroth and Flannery (2006), who conducted a non-experimental, descriptive study of 22 United States (U.S.) hospices, caring for dying patients is very stressful. Hospice nurses are particularly at risk. The authors found that 78% of the sample was at moderate to high risk for compassion fatigue, with approximately 26% in the high-risk category. Abendroth and Flannery suggested that the identification of trauma anxiety, life demands, and excessive empathy (leading to blurred professional boundaries) may help organizations identify nurses ‘at risk’ and provide interventions to manage compassion fatigue. ‘Limited information’ on the efficacy of interventions was the rationale for an additional study, a national survey of oncology nurses in the US, conducted by Aycock & Boyle (2009). Aycock and Boyle described three different types of interventions (on-site professional resources, educational programs, and off-site retreats) that were offered to a small subset of oncology nurses.
Both of the studies presented above focused on an individualistic-coping approach to compassion fatigue. We believe that further research needs to consider the socio-political context of nursing (e.g., gender, race, class) that shapes the development of close interpersonal relationships between nurses and patients. It is important to examine those situations where nurses and patients have formed long-standing relationships that may lead to the blurring of professional and personal boundaries.
Compassion Fatigue and Family Caregivers
Recently Perry, Dalton, and Edwards (2010) suggested that family caregiving may parallel the experiences of compassion fatigue among professional caregivers. This phenomenological study of five family caregivers in long term care in Canada found that these caregivers were engulfed in their caregiving role. No matter how difficult it was for them or how high the cost, they were unable to disengage from the caregiver role and find balance and respite when needed. The authors suggested that nurses in long term care could help prevent and lessen compassion fatigue in family caregivers by assessing for symptoms, encouraging family caregivers to attend to their own needs, and helping family caregivers to periodically “distance” themselves from the suffering of their relatives. Thus this study, and others previously reviewed, have suggested that it is important to maintain or set boundaries to safeguard against compassion fatigue. However, the question remains: is it possible, or even desirable to set and maintain these boundaries?
Recent studies on double duty caregiving, or the provision of care to elderly relatives by practicing healthcare professionals, have illustrated that nurses and other health professionals are situated in the “intermediate domain” where the boundaries between professional and personal caregiving blur. Because women are more likely to care for an elderly relative (Armstrong & Armstrong, 2004), with wives and daughters predominating (Keefe & Fancey, 2002), they are also at greatest risk of any potential negative effects of double duty caregiving. Although women in the health professions have used strategies, such as setting limits, in addressing the stress of ‘balancing’ or ‘juggling’ two or more roles (Guberman & Maheu, 1999; Ross, Ridout, & Carson, 1999), its effectiveness in double duty caregiving is questionable (Ward-Griffin, 2004; Ward-Griffin, Brown, Vandervoort, McNair, & Dashnay, 2005).
The difficulty in demarcating boundaries between professional and personal caregiving domains was evident in a qualitative, descriptive study of 37 female nurses, family physicians, physiotherapists, and social workers who provided care to elderly relatives (Ward-Griffin et al., 2005). Although setting limits and making connections were used to manage increasing caregiving demands with limited supports, the strategies were unsuccessful in preventing the blurring between professional and familial caregiving. The authors also identified three possible prototypes of double duty caregiving experiences, ranging from a small to large degree of boundary blurring: making it work, working to manage and living on the edge. For women who were living on the edge, the level of familial expectations to provide complex, daily care was exceedingly high. Further, family and workplace supports were either weak or non-existent. These women experienced dramatic blurring or erosion of their professional and family caregiving boundaries, characterized by feelings of isolation, tension, and extreme physical and mental exhaustion. Although this particular study did not focus on the phenomenon of compassion fatigue, further investigation on this issue is warranted.
In summary, although there is a growing body of literature on compassion fatigue in healthcare professionals, to date no published study has specifically examined compassion fatigue among nurses who also care for elderly relatives. We argue that research aimed at ameliorating the negative health effects of compassion fatigue needs to situate compassion fatigue within the socio-economic and political environment in which it occurs, identifying the effect of the environment on compassion fatigue, rather than focusing primarily on an individual’s coping skills and personal capacity to prevent compassion fatigue. The purpose of this research study is to begin to address this gap in the literature.
Qualitative, secondary analysis can be used to re-investigate or refine existing research or to investigate new research questions (Heaton, 2004). For the purpose of this study, supplementary, secondary analysis was employed to gain a more in-depth examination of issues not addressed in our original study. Specifically the study reported here focused on those double duty caregivers who were characterized as ‘living on the edge,’ i.e., living in situations where the familial care expectations were high, the resources or supports were limited, and as a result, boundaries of personal and professional care were eroded. In other words, the expectations far exceeded the resources needed to provide familial care.
A critical, feminist approach to caregiving was used to guide this analysis because the study explored the connections of women’s domestic labour with other forms of gendered work involving caring (Baines, 2004; Ungerson, 1990; Ward-Griffin & Marshall, 2003). It explicitly recognized caring as both a ‘labour and love’ and one that crosses ‘public’ and ‘private’ boundaries. In other words, ‘caring for’ and ‘caring about’ occurs in both the public and private spheres; and these spheres are interwoven. The following research questions guided our analysis:
- How do socio-contextual factors, such as expectations and resources, shape the development of compassion fatigue among double duty caregivers?
- What are the defining characteristics of compassion fatigue among nurse-daughters who are living on the edge”?
- What are the health consequences of compassion fatigue among double duty caregivers?
The goal of this gender-based analysis was to develop recommendations for healthcare providers and decision-makers to enhance the health and well-being of nurses and other health professionals who care for elderly relatives. The researchers purposefully sampled the original, qualitative datasets of our two previous double duty caregiving studies, selecting for analysis the responses of those nurse-daughters who were previously identified as living on the edge (i.e. their narratives revealed exceedingly high familial care expectations, limited resources, and poor health). The final sample included 20 nurses who were registered to practice in the Canadian provinces of British Columbia, Ontario, or Nova Scotia, who were employed full time, and who provided care to elderly parents. Study participants ranged in age from 42 to 69 years with a mean of 52 years. The majority of participants were married (77%), employed 30 or more hours per week (70%), and providers of ten or more hours of care per week (59%) to two or more elderly relatives (56%). At the time of the interview, all participants were actively providing care to an elderly parent, with the exception of two women who had recently experienced the death of their fathers.
Twenty-five transcripts from separate, in-depth interviews with double duty caregivers living on the edge (some were interviewed twice) were included in this secondary analysis. Following the guidelines for data analysis of Lofland, Snow, Anderson, and Lofland (2006), the three researchers individually, and as a team, identified emerging initial codes from the transcripts. Memos were also used as supplementary notes to inform the analysis. As the common themes of context, characteristics, and consequences of compassion fatigue emerged from studying the transcripts, the researchers iteratively refined the themes. The final step of analysis was to identify those quotes that most accurately captured the themes.
...the lack of personal and professional resources with increasing familial care expectations, shaped the development of compassion fatigue. Data analysis revealed that nurses providing care to elderly parents must constantly negotiate and renegotiate the boundaries between their professional and personal caregiving roles. Three major themes emerged: context, characteristics, and consequences. The context of double duty caregiving, namely the lack of personal and professional resources with increasing familial care expectations, shaped the development of compassion fatigue. Nurse-daughters caring for elderly parents under intense and prolonged conditions exhibited certain defining characteristics, such as being preoccupied and absorbed with their parents’ health needs. The continual negotiation between professional and personal care, and subsequent erosion of those boundaries, led to adverse health consequences experienced by the nurse-daughters. Each of these themes will now be presented with illustrative quotes.
Exploring the Context of Compassion Fatigue: Expectations and Resources of Double Duty Caregiving
Due to their specific knowledge and skills in healthcare, many women claimed they were the “nurse in the family.” Years of professional education and experience resulted in high expectations of self, as well as expectations from family and other health professionals, to provide 'nursing' care. Consequently they felt obliged to use their nursing knowledge in caring for their parents:
I was expected to care [for my mother with Alzheimer’s Disease] because, one, I am a nurse, two, because I am a daughter, and probably three, I am a mother. Also you are supposed to know these things (as a nurse), so I did have an expectation of myself.... (Nurse-Daughter 02)
In addition to their own expectations of caregiving, the participants also spoke of how others, once they learned that they were nurses, expected them to provide care to their parent:
The nurses actually expected a lot of me. I don’t mind giving mouth care and I would help them lift him up in bed. But one time the nurse went to pull up my dad’s hospital gown to fix his [urinary] catheter, and I quickly turned my head and I said I don’t want to see the family jewels. Their expectation of me as a daughter being there, like I mean, I’ll help with back rubs, and positioning, but it was almost as if I did become unpaid help (Nurse-Daughter 01).
These expectations often positioned participants in difficult situations, such as the one above in which the nurse worked to maintain boundaries between her daughter and her nurse roles. Familial expectations were particularly influential, sometimes pressuring the women to take on more caregiving responsibilities than they wanted or could manage. At times there was little or no choice regarding assuming the nurse role:
Well, it was one of the most difficult decisions in my life. My dad was a very difficult person to just sit and talk with. He was a man of few words. His expectations of me, and what I felt I could do, were quite different (Nurse-Daughter 05).
Moreover the women in this study usually provided professional care to their parents because often there were no other options and/or they believed that potential harm might come to their parents if they withheld care. Due to their relatives’ lack of knowledge about the healthcare system, medical conditions, and/or treatment options, they became their parents’ advocate, particularly if the parent’s physical or mental condition prevented them from making decisions. Participants believed that tests, procedures, and treatments should be explained and quality of care maintained:
I also tended to take on that job [caring for father] because I wanted my dad to have the best care that he could get, especially now…so many [hospital] cutbacks (Nurse-Daughter 01).
Participants took on the caregiver role so as to provide quality care for their parents. Participants took on the caregiver role so as to provide quality care for their parents.
In order to manage these additional caregiving demands, family, colleagues, and other professional resources were identified as the primary sources of support, providing emotional, informational, and instrumental assistance. For those who were married, spouses were often described as ‘supportive,’ or ‘wonderful,’ and/or keeping them ‘grounded.’ For others, support from siblings, especially sisters, was a critical resource to help them manage the care of elderly parents:
My sisters are definitely [a support],we support each other and many, many friends have parents going through different situations and a couple of staff at work- very similar situation so we do get support and you’re feeling like you’re not alone dealing with it and lots of people are going through it (Nurse-Daughter 19).
Women who had workplace resources and supports, such as an understanding manager, flex time, and unpaid leave of absences, considered themselves ‘lucky.’ In many situations, however, the current shortage of health professionals prevented them from taking advantage of many of these workplace supports, such as a leave of absence. When asked to identify existing supports within their professional organizations, many had difficulty identifying any programs or policies that would help them address the unique challenges of providing care at work and at home:
A work place that’s caring is the best thing that they can provide but doing that is not easy in this environment. I mean it hasn’t been [supportive] for the past 10 years... I feel that nurses have picked up so much slack and taken so much of a hit with this healthcare system that they don’t feel cared for, so it’s really hard to keep the energy up (Nurse-Daughter 09).
The erosion of personal and professional caregiving boundaries usually occurred during a crisis or over time when the caregiving expectations and demands outweighed the available resources.
Defining Characteristics of Compassion Fatigue within Double Duty Caregiving
It is not surprising that most participants revealed strong feelings of affection for their parents, leading to a preoccupation with their parents’ health. This emotional investment while providing care caused a number of problems for nurse-daughters:
...all of sudden my mother was disabled and when her health status changed, I panicked. I think it’s because of the emotional factor, you’re subjective. You’re not objective. And we had such a close relationship as a mother and daughter, that all of a sudden, I saw her changing. She became an elderly lady and I didn’t like it...it is very difficult to look after her when you’re so emotionally attached (Nurse-Daughter 04).
When asked to compare the care of their parents with the care of their patients, the women often explained how their emotional feelings for parents differed from their feelings about patients/clients, and how these strong feelings often led to absorbing the pain and suffering of their parents:
When I saw my parents suffering, I suffered. I think that is the difference. I find with my clients that I am able to step back and be more of a tour guide with whatever their problem is...I would be more desperate for them [parents] to be safe and alive. When you are at work, you are able to separate the respective boundary of any individual and you become more of a professional, helping or guiding. When it’s your parent and someone you love so intensely, you just want more for them to be safe and healthy (Nurse-Daughter 03).
Because the woman was my mother and you love your parent, and I think it’s more emotionally charged, I know from myself looking back there’s a lot more anger than I even appreciated at the time I was going through it (Nurse-Daughter 15).
Our analysis illustrated that over identification with, and empathic concern for their parents’ health and wellbeing were defining characteristics among nurse-daughter caregivers:
When they were going through that it was emotional to see them in that way, in that disabled way. So that is difficult, which I don’t think you feel that way about a patient that you’re caring for at the hospital, but you might not have a chance to develop that longevity to them, to experience the concerns that you have for them (Nurse-Daughter 19).
The more these women identified their parents’ situations with their own, the greater their chances of experiencing emotions similar to their elderly parents, ranging from love to intense anger.
Having the medical knowledge of what could happen to their parents also influenced the degree of concern nurses reported:
I think my sister…is less affected and I say that because she is not as involved with providing information or whatever. She sees them less often and doesn’t always realize how poorly they are because we [nurses] are more aware of the medical repercussions of say going into renal failure, cardiac failure something like that you know, you have those main concerns that you know that we fear so where there’s more, more weight on our shoulders in that we think of this stuff more because we know more about what’s going on or the implications (Nurse-Daughter 20).
An understanding of their parents’ medical conditions contributed to the stress of caregiving. An understanding of their parents’ medical conditions contributed to the stress of caregiving.
Intense and prolonged caregiving was another defining characteristic of compassion fatigue that emerged from the analysis. As previously mentioned many of the women explained that the constant demands to care for their parents far exceeded their resources. Not being able to take any time off from caring, always being ‘on call 24/7,’ and being overloaded, were common occurrences:
There is more responsibility, more than you can handle on any one given day. It’s like a constant river flowing through and you never catch up. You just never catch up (Nurse-Daughter 09).
Consequently intense, prolonged caregiving predisposed double duty caregivers to compassion fatigue.
Consequences of Compassion Fatigue within Double Duty Caregiving
Since many participants were usually the most qualified healthcare person within the family unit, they felt that they had no choice but to assume the bulk of care for their parent, in spite of the consequences. According to all the participants, being a nurse-daughter was physically and emotionally exhausting. Many of the women described serious consequences to their physical health:
I think it’s emotionally draining because you’re switching back and forth. I would think if I wasn’t a nurse, it wouldn’t be easier but you would just have the one role because you would be the family member who is a caregiver. You wouldn’t be the nurse who is the family member (Nurse-Daughter 07).
[Have you noticed any changes in your health?]
Absolutely, absolutely. Sleep disturbances. Um, started with some hypertension issues, that I managed to control with diet and exercise but it was a challenge to make that happen. And, weight control became an issue for me. And a general sense of fatigue, being all tired. And then coming to work on the Monday morning and trying to, having to, needing to turn on that energy again to do my work here (Nurse-Daughter 11).
Feelings of inadequacy and powerlessness were also evident in the participants’ stories:
It’s the hardest thing in the whole world to sit by your parent’s bedside and know there’s not a damn thing you can do. Nothing. It’s totally out of your hands (Nurse-Daughter 11).
I felt protective of my parents, therefore I felt I needed to protect them and when I couldn’t, it was devastating. It was the most frustrating, disheartening, frightening, anxious, disturbing experience in my whole life (Nurse-Daughter 10).
Other women talked about a variety of incidences in which it was extremely difficult to be both a nurse and a daughter, even though the situation called for their clinical expertise:
With my mother, I knew that her pill dispenser had been played with but it wasn’t as easy to say to my mother “these pills are mixed up in here. How did this happen?” because here I was a daughter telling my mother that things weren’t right. So I felt that difficult. In the community [as a nurse], it’s not (Nurse-Daughter 05).
They [healthcare providers] were talking to me as a nurse, but how can I be clinical when this is my mother!? I had difficulty with that because I felt that I wasn’t allowed to be emotional, because I felt that I wasn’t the nurse in this situation. I was the daughter and I found that hard (Nurse-Daughter 02).
It was uncomfortable because his personality was different. He didn’t like to be told by his daughters, he didn’t want his daughters to be the nurses, but he didn’t have adequate pain control and it was a struggle for me always to deal with the type of symptoms that he dealt with… He was the kind of person who really wanted to be in charge and it was hard for me as a daughter. I could’ve gone into a situation like that as a nurse and dealt with it much better, but because it was my dad it was difficult (Nurse-Daughter 14).
As their parents’ condition worsened, some women needed to make difficult decisions which required their nursing judgment:
My mother told me, “I am so mad at you. I thought that you loved me but you don’t love me if you put me in that [nursing] home”...but I knew that I was doing the right thing. As a nurse, I knew in my head that I was doing the right thing. I wish in my heart I could have done things differently but there was no choice at the time (Nurse-Daughter 02).
Many participants expressed concern that they were expected to assume too much responsibility for the care of their family member, particularly in situations where they lacked the necessary knowledge and skills. This caused tremendous guilt, especially if the parents’ health deteriorated under their care. Further, participants reported feeling extremely guilty about making the wrong decisions regarding the care and this guilt was compounded by their professional role as a nurse:
My biggest fear is that I would miss something...it was very exhausting, all that running around ...I was beside myself. And then I think back, I wonder if I was so tired that I missed my dad’s complaint about the abdominal pain. Like, why didn’t I know that his sigmoid was going to blow? ...I will take that guilt with me to the day I die (Nurse-Daughter 8).
In summary, compassion fatigue was clearly evident among double duty caregivers ‘living on the edge.’ Not only did the women in this study provide patient care to their parents, they did it under intense and prolonged conditions. Within this context, nurse-daughters were preoccupied with their parents’ health, over identified with their parents’ suffering, and in turn absorbed their parents’ suffering. Because double duty caregivers are uniquely positioned both as daughters and nurses, unable to 'escape' from the 24/7 responsibilities of caring for and caring about their parents, they are particularly vulnerable to developing compassion fatigue.
Discussion and Conclusion
Our study findings suggest that the medicalization of compassion fatigue is problematic for a number of reasons. The purpose of this study was to critically examine compassion fatigue amongst nurse-daughter caregivers who were categorized as ‘living on the edge.’ We were able to answer affirmatively our question in the first line of this article, specifically: Are nurses who care both at home and at work at risk of developing compassion fatigue? In addition our study findings highlight a number of other insights related to the contextual factors, including expectations and resources, that shape the experience of compassion fatigue within double duty caregiving. Specifically we argue that future research needs to move beyond a medical (behavioral) approach regarding compassion fatigue, one that sees compassion fatigue as a condition to be ‘prevented’ or ‘managed,’ to an approach that focuses on the social-political context of compassion fatigue.
Our study findings suggest that the medicalization of compassion fatigue is problematic for a number of reasons. First, although the identification and treatment of the symptoms of ill health, including physical and mental exhaustion, among double duty caregivers is important (Sabo, 2006),conceptualizing compassion fatigue as a pathological condition without considering the social context in which it occurs only addresses those who are already in crisis. Second, focusing on the individual 'traits' of nurses, such as a high degree of empathy, or 'at risk' individuals (those who are unable to set boundaries), tends to locate and reinforce the idea that the ‘problem’ of compassion fatigue lies with the individual. Such reasoning represents a down-stream approach that ‘blames the victim’ (Butterfield, 1990). Finally, this medical/behavioral preventative approach to compassion fatigue also suggests that it is the individual’s responsibility to find the solution (Raphael & Bryant, 2002). Recommendations, such as reminding people to take care of themselves or to develop personal strategies, including the pursuing of personal psychotherapy or ‘striking an appropriate work-family balance’ (Huggard, 2003), imply that the solution is within an individual’s control; and if it is not within their control that they are obliged to accept or adapt to what they cannot control (Najjar et al., 2009).
...future research needs to move beyond a medical (behavioral) approach...to an approach that focuses on the social-political context of compassion fatigue. An alternative approach to compassion fatigue, and the approach we recommend, is the recognition of the social context of compassion fatigue and the complexity of double duty caregiving. Although caring is a central and common feature of the personal and professional lives of many women (Baines, Evans, & Neysmith, 1991), nurse-daughters in this study often could not 'escape' their role as caregiver. Due to gendered expectations of nurse-daughters, these women were constantly caring for someone, either a patient or a parent. We argue that these societal expectations have less to do with personal stressors and more do with how nurse-daughters are socially positioned as women caregivers. Care provided in the formal system cannot be understood without recognizing that it is women who perform the bulk of this professional work, and additionally that women’s care in the informal care system is integrally linked to their family (Armstrong, 1993; Armstrong & Armstrong, 2004; Duxbury & Higgins, 2001; Fast, 2005). This is not to suggest that nurses should not provide care to their relatives, but rather to draw attention to the caring work that is expected of the nurse-daughter, often without reprieve.
Women in our study found it difficult to reconcile expectations of them as the 'nurse' and the 'daughter.' For instance, even though they were seen, by themselves and by others, as the 'natural' person to provide parental care, expectations to provide competent nursing care while in the role of daughter frequently placed them in a 'no-win' situation. Other researchers who have studied the effects of combining family and work roles (Connidis, Rosenthal, McMillan, 1996; Golden & Farber, 1998) also found that work-family expectations were at times unrealistic. Further research that draws the links between professional and family caregiving is sorely needed (Morris, 2004); only then will we fully understand the health effects of simultaneous memberships in the private and public domains of care work.
...it is particularly challenging for nurse-daughters to meet the same standards of care for family as they meet in professional nursing work. Another insight that emerged from our analysis related to the context of care is that nurse-daughters did not have the same resources at their disposal as they did in their work settings; yet, expectations of themselves and others to provide familial care still prevailed. Further, it is particularly challenging for nurse-daughters to meet the same standards of care for family members as they meet in their professional nursing work. Frequently nurse-daughters were expected to provide 'optimal' care premised on a professional definition of care, but without the same support. Our findings indicated that workplace, professional, and government resources to assist daughters in caring for their elderly parents were minimal at best.
Inadequate resources coupled with unrealistic expectations often led to feelings of helplessness, anger, and guilt feelings that may contribute to their leaving the nursing profession (Leon, Altholz, Dziegielewski, 2010). Paid homecare services are largely delivered on a supplementary basis with a heavy reliance on unpaid family caregiving. Our analysis suggests that availability of hospital, home, and community care services is essential if we are serious about decreasing the incidence of compassion fatigue among double duty caregivers. Only then will nurse-daughters have the option of letting go of their nurse role as long as their parent is being adequately cared for by paid staff.
Finally, our study findings suggest that the dynamics of caregiving are extremely complex when the family caregiver is a health professional. Strategies are needed to address this complexity beyond the current short-term, individual-coping approach to compassion fatigue. Previous researchers have demonstrated that double duty caregivers who have limited resources to meet their caregiving demands experience a negative impact on health and well being (Phillips, Bernard, & Chittenden, 2002; Walters, Lenton, French, Eyles, Mayr, & Newbold, 1996; Ward-Griffin, 2004), suggesting the need for long-term solutions in the form of professional, workplace, and government policies. For instance, there is an urgent need to examine current practice standards of nursing and other regulated health professions in order to indentify tangible and needed supports for double duty caregivers. Efforts, such as those reported in the Nurse Fatigue and Patient Safety Report (Canadian Nurses Association, 2010), can contribute to workplace and other health initiatives spearheaded by health professional groups, policy-makers, and other key stakeholders interested in preventing compassion fatigue among double duty caregivers. Working with double duty caregivers in identifying social-political conditions that predispose them to compassion fatigue would potentially be more beneficial than the current tendency of ‘naming and blaming’ individuals with compassion fatigue.
...the need to advocate for policy changes that clearly support nurse-daughters and other double duty caregivers is great. Given the structural basis of continuing gender inequities in society today, and the magnitude of the change required, the need to advocate for policy changes that clearly support nurse-daughters and other double duty caregivers is great. Furthermore, there is an urgent need for healthcare providers, mangers, and policy makers to consider the unique social position of double duty caregivers and to address the socio-political factors that predispose nurse-daughters and other double duty caregivers to developing compassion fatigue. Only then will we be successful in identifying and implementing appropriate strategies that will address the devastating effects of compassion fatigue.
Funding Acknowledgement: The authors gratefully acknowledge the funding support from the Canadian Institutes of Health Research (project # R2474A15)
Catherine Ward-Griffin, PhD, RN
Dr. Ward-Griffin is Professor and Chair of Graduate Studies at the Faculty of Health Sciences, Arthur Labatt Family School of Nursing, as well as a nurse scientist at the Lawson Health Research Institute in London, Ontario, Canada. Dr. Ward-Griffin’s research interests include women’s health, community health promotion, caregiving, home care, and social policy. Using both qualitative and quantitative methods, her program of research focuses on the caregiving relationships between and amongst healthcare providers, older adults, and their families in both home care and long term care settings. Dr. Ward-Griffin has taught family nursing, community health nursing, gerontology and health promotion to both undergraduate and graduate students for 30 years. She is actively involved in provincial, national, and international health policy and practice issues. She received a BScN and a MScN from the University of Western Ontario, London, Ontario, Canada and a PhD from the University of Toronto, Ontario, Canada.
Oona St-Amant, MScN, RN
Ms. St-Amant is a doctoral student in the Arthur Labatt Family School of Nursing at the University of Western Ontario, London, Ontario, Canada. She received a BScN from the University of Ottawa; Ontario, Canada, and a MScN from the University of Western Ontario, London, Ontario, Canada. Ms. St-Amant’s Master’s thesis examined sibling and sibling-in-law relationships in home-based dementia care. She has also been involved in other Canadian Institutes of Health Research (CHIR)-funded studies related to caregiving. Currently, Ms. St-Amant is the project coordinator for a study entitled “Health Professional Caring for their Elderly Relatives: Investigating the Health Effects of Double Duty Caregiving.” In 2010, she received a doctoral award from CIHR in Health Services and Population Health HIV/AIDS Research to pursue her research interests in Canadian non-government organizations providing healthcare in developing nations. Oona St-Amant’s doctoral supervisor is Dr. Catherine Ward-Griffin, Professor at the University of Western Ontario.
Judith Belle Brown, PhD
Dr. Brown is a Professor in the Centre for Studies in Family Medicine, the Department of Family Medicine, Schulich School of Medicine & Dentistry at The University of Western Ontario (UWO) and the School of Social Work at King’s University College, London, Ontario, Canada. Dr. Brown has published over 100 qualitative and quantitative papers on various healthcare topics such as patient-centered care, inter-professional teamwork and teambuilding, physician wellbeing, and double duty caregiving. Dr. Brown is part of a team lead by Dr. Catherine Ward-Griffin that has been conducting a program of research on double-duty caregiving for almost ten years.
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© 2011 OJIN: The Online Journal of Issues in Nursing
Article published January 31, 2011
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