ANS874

April 25, 2014

5:21

Advances in Nursing Science Vol. 37, No. 2, pp. 117–131 c 2014 Wolters Kluwer Health | Lippincott Williams Wilkins Copyright 

Professionalizing Familial Care Examining Nurses’ Unpaid Family Care Work Oona St-Amant, MScN, RN; Catherine Ward-Griffin, PhD, RN; Judith Belle Brown, PhD; Anne Martin-Matthews, PhD; Nisha Sutherland, MScN, RN; Janice Keefe, PhD; Michael S. Kerr, PhD An emergent grounded theory was used to examine Professionalizing Familial Care, the processes by which registered nurses enact professional care work within the familial care domain. A sample of registered nurses (n = 32) were interviewed by telephone at multiple time points over a 6- to 12-month period. The findings revealed that the professionalization of care work was often reinforced by societal, familial, and self-expectations. Setting Limits and Making Connections were the dialectical overarching processes shaping the professionalizing of care while 6 interdependent substrategies emerged: assessing, advising, advocating, collaborating, coordinating, and consulting. These findings will help inform refinement of policies and practices for nurses who provide care for an older relative. Key words: aging, care work, double-duty caregiving, family caregiving, nursing, Professionalizing Familial Care, unpaid professional caregiving

T

HE DEMOGRAPHIC increase in frail older adults, coupled with an underresourced health care system favoring acute care services, has meant that the demand for family caregiving is greater than ever. Registered nurses are health professionals typically

Author Affiliations: Daphne Cockwell School of Nursing, Ryerson University, Toronto, Ontario, Canada (Ms St-Amant); Arthur Labatt Family School of Nursing, Western University, London, Ontario, Canada (Drs Ward-Griffin and Kerr and Ms Sutherland); Department of Family Medicine, Schulich School of Medicine and Dentistry, School of Social Work, Kings University College, Western University, London, Ontario, Canada (Dr Brown); Department of Sociology, University of British Columbia, Vancouver (Dr Martin-Matthews); and Family Studies & Gerontology, Mount Saint Vincent University, Halifax, Nova Scotia, Canada (Dr Keefe). Supported by Canadian Institutes of Health Research, Institute of Gender & Health (IGH) #MOP89362. There is no conflict of interests/financial disclosures. Correspondence: Oona St-Amant, MScN, RN, Daphne Cockwell School of Nursing, Ryerson University, 350 Victoria St POD-458A, Toronto, ON M5B 2K3 ([email protected]). DOI: 10.1097/ANS.0000000000000023

active in “care work” and are often called upon to assist with family caregiving needs. In fact, conservative estimates suggest that among nurses aged 35 years and older, 35% to 40% provide care to an aging parent.1 This phenomenon, which has been described as “double-duty caregiving” (DDC) in several Canadian studies, predominantly involves the provision of care to an older relative by a practicing health care professional.2,3 The blending of these caregiving roles has had considerable implications for the physical and mental health of nurses and their families,2,4-6 such as burnout,7 stress, fatigue, and emotional disturbances (B. Lee, unpublished data, 2009).3,8 Double-duty caregiving also has implications for nurses’ performance on paid work time. Nurses with multiple caregiving roles experienced greater fatigue at work than nurses who did not have family caregiving responsibility.9 A lack of adequate health care resources, such as community and home care services, has contributed significantly to this growing phenomenon. Building on a program of research in DDC,2,3,10 the overall purpose of this 2-phased study was to examine specific 117

Copyright © 2014 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.

ANS874

April 25, 2014

118

5:21

ADVANCES

IN

NURSING SCIENCE/APRIL–JUNE 2014

negotiating strategies employed by doubleduty caregivers in the provision of care to an elderly relative. In this article, we report on the findings from the second phase of the study, which led to the development of an emergent grounded theory, Negotiating Professional-Familial Care Boundaries, with 2 broad dialectical processes: Professionalizing Familial Care and Striving for Balance. More specifically, Professionalizing Familial Care, those specific strategies nurses used as they attempted to balance their familial and professional care responsibilities. This study identified how nurses utilized professional strategies and resources to care for their aging relatives at home.

LITERATURE REVIEW Today, an increasing number of family caregivers routinely perform the tasks of health care professionals, and often these caregivers assume significant responsibility in caring for their aging parent.11 Research has shown that currently family caregivers not only perform complex medical duties, supervise patients, make decisions, solve problems, and provide emotional support but also provide comfort and coordinate care, similar to what paid nurses might do.12 In this literature related to caregiving, the focus is on performance without professional training11 ; however, a few studies have examined family caregiving when the provider is also a health care professional.2,5,6 Blending “familial” and “professional” roles Research has found that despite the similarity in roles between family and professional caregiving, nurses have specific needs related to the duality of being both a nurse and a caregiver.6 Ward-Griffin et al., 2005 used a qualitative study to examine the personal experiences of women (n = 37) employed in 4 different health professions who provided care to elderly relatives.3 The authors found

that the participants experienced both internal (from within) and external (from others) expectations to provide unpaid professional care in their personal lives.3 Furthermore, the authors identified 3 distinct yet interconnected types of double-duty caregiving experiences: Making It Work, Working to Manage, and Living on the Edge. In Making It Work, double-duty caregivers were able to contain expectations, had strong supports, and were able to solicit assistance from others with ease that resulted in minimal boundary blurring of professional and familial lives. The expectations for those Working to Manage were moderately demanding and increasing over time, their supports tending to offset their expectations, with the blurring of boundaries increasing substantially compared with those Making It Work. Finally, double-duty caregivers Living on the Edge had very high levels of both internal and external expectations, with daily care more demanding and few supports that resulted in an erosion of boundaries between professional and familial domains of care.3 Accordingly, double-duty caregivers tend to oscillate between the 3 types depending on familial care expectations, level of support, and negotiating strategies. Killien5 examined the physical and psychosocial dimensions of nurses’ health in the context of work and family influences and found that work-family conflict could potentially jeopardize nurses’ abilities to provide safe and optimal care. Ward-Griffin et al., in press found that the separation of such professional and family caregiving domains was problematic, acknowledging the negative health effects such as stress, fatigue, as well as physical and emotional health concerns that resulted from the blurring or erosion of boundaries. It is important to note that within the context of caregiving, roles are not necessarily task-focused, but rather all-encompassing.3 As Ward-Griffin, 2004 has noted, because the domains of care are intertwined and inseparable, caregiving is continuous, rather than compartmentalized, similar to parenting.3 Despite our understanding of the blending of caregiving roles, there is a

Copyright © 2014 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.

ANS874

April 25, 2014

5:21

Review Comments for Professionalizing Familial Care lack of knowledge related to the actual strategies nurses employ to maintain, support, facilitate, and/or resist their “role” as a double-duty caregiver. In this article, we address this gap in the literature through the development of a grounded theory and explore the specific strategies used by nurses in the provision of familial care. Unpaid care work In the literature related to unpaid professional work, work processes tend to be contextualized as “volunteering.” Volunteering is commonly recognized as a prosocial activity that often fills a gap in publically funded services, with the intent to benefit others, often without regard for self.13 Baines14 makes the distinction, however, between formal volunteers who “donate” their skills and service for free and informal unpaid workers who provide care to family. She argues that volunteer work is formally recognized while informal/ unpaid caregiving tends to be invisible work. The visibility of work has implications for recognition and resources. Brown15 found that the tasks undertaken by volunteers for the most part do not emulate the distribution of paid employment, meaning that people do not typically engage in volunteer activities that relate to their profession. The exceptions are those who offer “pro bono” work, when professionals offer the same service as their paid employment, often using paid employment resources, on an unpaid basis.15 And yet, unpaid caregiving has not been conceptualized as “pro bono” work even when the transfer of skills is the same.14 Unpaid caregiving work performed by professionals who are typically remunerated for the same work in a formalized system has seldom been examined in the literature.2 Little is known about how nurses respond to their double-duty caregiver role and if they employ certain strategies that may lead to the attainment of additional resources and/or recognition for doing this unpaid care work in the family domain. This study sheds light on the context of unpaid care work, how nurses strategize to

119

mobilize professional resources to facilitate their familial care work, and the specific factors that shape the (in)visibility of unpaid care work. METHODS To conduct this study, we employed a 2phased, sequential mixed methods design to examine specific negotiating strategies utilized by double-duty caregivers in the provision of care to an elderly relative. Approval for the study was obtained from the ethics review board of Western University, Health Sciences Research Ethics Board for both phases I and II of this study. In phase I, we used a cross-sectional correlational survey design to examine the caregiving interface (CI) between the familial and professional domains of caregiving and the resulting health effects for double-duty caregivers (n = 529). Additional information pertaining to phase I is provided by Ward-Griffin et al., in press.1 In phase II, the focus of this article, an emergent grounded theory approach was used to examine the negotiating strategies housed within the 2 overarching strategies: Setting Limits and Making Connections.16 We were particularly interested in the oscillation within the 3 DDC prototypical caregiving experiences, specifically how DDCs oscillate (or not) over time and what factors shape their experiences. The following research questions were posed: “What negotiating strategies do nurses employ in the provision of care to their relative?”; “What strategies are perceived as being effective in decreasing the blurring of boundaries”? Sampling In phase I, a stratified sample of 3700 registered nurses was randomly selected from the membership list of the College of Nurses of British Columbia, Ontario, and Nova Scotia. Nurses were invited via postal mail to participate in the study; they were provided a letter of information, consent form, and survey

Copyright © 2014 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.

ANS874

April 25, 2014

120

5:21

ADVANCES

IN

NURSING SCIENCE/APRIL–JUNE 2014

package with the option to participate by completing a paper copy with postage or completing a Web-based online survey. A total of 1424 nurses completed the phase I survey, 402 respondents consented to a phase II interview, and 117 self-identified as doubleduty caregivers. The research team collaborated regularly to devise a theoretical sampling strategy that informed the selection of participants for phase II. This strategy evolved from previous work that identified the prototypical experiences of DDC on the basis of the degree of blurred boundaries: Making It Work, Working to Manage, and Living on the Edge.3 We established theoretically informed CI score that measured the degree of blurring of boundaries. We established ranges that represented each prototypical experience: respondents who scored between 7-18 of 35 were assigned to “Making It Work,” scores of 19-24 of 35 were assigned to “Working to Manage,” and 25-35 of 35 were assigned to “Living on the Edge.” The labels are intended to capture the oscillation in blurring of boundaries. The greater the degree of blurring of boundaries, the higher the CI scores. Once we felt that there was saturation of the prototypical experiences, we refined the theoretical sampling strategy to include other factors such as the number of care recipients for whom the double-duty caregiver provided care, geographical proximity to their relative, sibling involvement in care, socioeconomic status, number of employed hours per week, and a general health score. Each respondent was contacted by telephone within 2 months of receiving a consent form to schedule a telephone interview. The research team initially approached 82 respondents for telephone interviews. If the contact information of the participant was incomplete or if the participant did not return communication after 3 attempts, then he or she was excluded from phase II. We recruited 50 participants to phase II studies, which had 2 data collection points. These 50 participants all participated in the first interview (time 1) and 32 of the 50 participants participated in

the time 2 interviews, which occurred 6 to 12 months after time 1. Attrition in the sample size over time was largely attributable to the death of the elderly relative receiving care, change in employment status, and/or inability to locate the participant for time 2 follow-up. Data collection Because it was important for us to understand how the double-duty caregivers utilized strategies for care over time, we included data only for which we had both time 1 and time 2. Therefore, we report the findings and sample description later on the basis of 32 participants. All interviews were conducted one-onone between nurses and interviewers. Each participant was asked open-ended questions about his or her experiences as a doubleduty caregiver. It was important to understand how DDC oscillated over time and how each participant enacted strategies for negotiating this care. Sample The majority of phase II participants lived in Ontario (n = 20, 62.5%), while 25% (n = 8) lived in Nova Scotia and 12.5% (n = 4) lived in British Columbia. They were evenly divided between male and female participants. The majority were married (75%) while 15% were single and 10% were separated or divorced. A substantive proportion of participants were diploma prepared (59%) while only 25% were baccalaureate prepared; the remainder of the sample were graduate prepared. Most were born in Canada (88%). The average income was between $75 000 and $90 000 per year. Most participants cared for 1 relative (53%), while 34% cared for 2 or more aging relatives. A large proportion of participants worked greater than 30 hours per week (84.5%). Twenty-one percent practiced in rural area while 75% practiced in an urban location. The prototypical caregiving experience changed over time; in time 1, 12.5% (n = 4) of the sample were “Making

Copyright © 2014 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.

ANS874

April 25, 2014

5:21

Review Comments for Professionalizing Familial Care It Work,” 34.4% (n = 11) were “Working to Manage,” and 53.1% (n = 17) were “Living on the Edge.” While in time 2, 21% (n = 7) were “Making It Work,” 34.4% (n = 11) were “Working to Manage,” and 43.7% (n = 14) were “Living on the Edge.” Notably, over time, caregiving improved as fewer participants experienced a greater degree of boundary blurring, described as Living on the Edge. Furthermore, more participants experienced Making It Work, a lesser degree of boundary blurring with positive health outcomes. This oscillation will be discussed further in the “Findings” section. Data analysis Our analyses were based on 2 sources of data: interview transcripts and field notes. After each telephone interview, researchers compiled detailed memos about their perceptions, insights, nuances of communication, and interactions between and among the interviewees. While data were still being collected and transcribed, the analysis team employed constant comparative techniques characteristic of constructivist grounded theory to build and modify the emerging theory and refine our understanding of the proposed prototypical caregiving experiences.16 Initially, the analysis was undertaken by the research team to compare and combine its independent analyses. Early analysis focused on initial codes that emerged from the data, including broader negotiating strategies of caregiving: Setting Boundaries and Making Connections. Focused codes were developed once the initial codes became more refined. As these focused codes emerged, the research team created a coding scheme that was applied to each transcript. These codes were then entered into NVivo 9.0 Qualitative Data Analysis Software (2010; QSR International Pty Ltd, Burlington, Massachusetts), a software program to facilitate and organize qualitative analysis, particularly the identification of relationships within and between codes.17

121

The next phase of analysis involved the identification of the properties and dimensions of categories and subcategories—for example, understanding the negotiating strategies. This led to the development of a data matrix, which required the research team to return to each transcript and generate a “gestalt” picture of each participant on the basis of initial DDC constructs (expectations, resources, strategies, health, and prototypical DDC experiences). This process provided us with a visual summary of each participant and helped to make constant comparisons between and among the participants. The final phase of analysis was the development of a diagram (Figure), depicting emergent interrelationships between the various DDC concepts. Rigor Member checking in the follow-up (time 2) interviews (ie, checking whether the interpretation has captured the perspectives of the study participants) was employed to give the participants the opportunity to share their thoughts related to the interpretation and applicability of the preliminary analysis. In addition, 3 provincial focus groups were conducted by the principal investigator and 1 coinvestigator to verify whether preliminary findings resonated with their experiences. A total of 11 nurses who had participated in time 2 interviews were included in the focus groups (Ontario, n = 3; Nova Scotia, n = 6; British Columbia, n = 2). Each focus group lasted 2 to 3 hours. During the focus group, participants were provided an overview of each of the 3 prototypical experiences, Making It Work, Working to Manage, and Living on the Edge, and invited to share how their own caregiving experience resonated (or not) with the emergent theory. The 3 provincial focus groups allowed us to confirm our emergent theory and subprocesses as well as generate ideas with the participants about potential community and workplace resources that could assist double-duty caregivers in the future.

Copyright © 2014 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.

ANS874

April 25, 2014

122

5:21

ADVANCES

IN

NURSING SCIENCE/APRIL–JUNE 2014

Figure. Negotiating professional and familial care boundaries.

FINDINGS Data analysis led to the development of an emergent grounded theory, Negotiating Professional and Familial Care Boundaries, as depicted in the Figure. In response to familial care expectations and availability of resources, a central finding of this study is that nurses who provide care to older relatives use 2 major types of strategies, setting limits and making connections, which ultimately shape the degree of boundary blurring between the family and professional domains of care. This CI is negotiated through 2 broad dialectical processes: Professionalizing Familial Care and Striving for Balance. Striving for Balance (described by WardGriffin et al., in press) represents the health experiences of double-duty caregivers.17 The participants in this study engaged in 2 interrelated strategies: Reaping Benefits and Taking a Toll. These strategies are experienced along a continuum rather than dichotomously. Reap-

ing Benefits represents those positive health experiences resulting from collaborative efforts, support, and less blurring of boundaries and having additional access to health care resources because of professional status. Comparatively, Taking a Toll involves those negative health experiences ensuing from significantly blurred boundaries, such as stress related to expectations, and being unable to escape caregiving demands. Furthermore, we have refined our conceptualization of the CI over time, recognizing that the participants in this study oscillate within the 3 previously identified prototypical experiences: Making It Work, Working to Manage, and Living on the Edge (see Ward-Griffin et al., 2005).3 Professionalizing Familial Care is the focus of this article. The 2 major strategies within the professionalization of familial care are Setting Limits and Making Connections. In order for nurses to provide “professionalized” family care work, they enacted 6 specific interdependent strategies: Assessing, Advising,

Copyright © 2014 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.

ANS874

April 25, 2014

5:21

Review Comments for Professionalizing Familial Care Advocating, Collaborating, Coordinating, and Consulting. Broader strategies: Setting limits and making connections Building on previous work, the strategies of Setting Limits and Making Connections aim to contain expectations and resources.3 These overarching strategies are embedded in the CI between professional caregiving and familial caregiving and are dialectical, wherein setting limits is preserved and fulfilled by making connections (and vice versa). Therefore, both strategies often occur simultaneously and reinforce each other. Setting limits is a strategy for double-duty caregivers to contain expectations of family members, other professionals, and themselves. Double-duty caregivers were often expected to provide care and advice beyond their knowledge base and level of comfort. They set limits on the type of care provided (mostly physical care) and typically gave advice only when asked or when necessary such as in acute situations. Further, Setting Limits was shaped by their professional role as they are used to demarcate what is and is not an appropriate task. Therefore, the professionalization of the “care work” did not just occur during their paid work time but it also characterized their unpaid care work (see the Figure). Making, and using, connections was a common strategy employed by the doubleduty caregivers in this study. They used their knowledge of the system and their professional status to acquire certain types of support, such as home care service or consultations with specialists often not readily available or easily accessible. Using connections was a good example of how the participants’ associations with the professional world of caregiving assisted them with their unpaid familial caregiving. The 6 interdependent strategies of Assessing, Advising, Advocating, Collaborating, Coordinating, and Consulting are described later.

123

Substrategies of Professionalizing Familial Care The professionalization of familial care is a process by which nurses utilize professional strategies and resources to care for their aging relatives at home (see the Figure). For example, a registered nurse who works as a diabetes educator may utilize her assessment skills to identify symptoms of a crisis in an ailing parent living at home with diabetes. The provision of care work to an older relative is by and large unpaid, balanced with full-time employment, and often expected by other family members and formal care providers.

Assessing Assessing involved examining the care situation and making a judgment or decision. The double-duty caregivers often assessed the care recipient, other family members, the care given by health care professionals, and themselves. It typically consisted of a litany of routine questions: I frequently call home. I ask for the battery of examinations that Mom has gone through recently. I participate in what the latest update is on consultations and appointments with her GP, what medications Mom is on, what activities Mom is presently doing, what type of symptomatology she’s been demonstrating . . . .my presence is to recognize some of the stressors that not only my Mom is dealing with, but what my sister is having to deal with . . . . (ONM 2149)

Family members and other health care providers expected nurses to assess without context or other data such as treatment options available: “Everybody was calling in to me and saying like, ‘what do you think of this?’ and they were sending me faxed reports . . . .” (NSM 2721) The strategy of assessing was used to set limits and avoid blurring of professional and familial boundaries. As such, participants determined the care recipient’s status and level of care needed through phone calls, face-toface contacts, or mediatory care.

Copyright © 2014 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.

ANS874

April 25, 2014

124

5:21

ADVANCES

IN

NURSING SCIENCE/APRIL–JUNE 2014

When assessing care recipients, participants were not engaging in a social visit and were not assuming the role of a relative. Nor was it a subjective analysis or emotional assessment; their assessment was professional and objective, thus moving them out of the familial realm into the professional realm: I didn’t want to know generally how she was, “Did she have a good day today?” That wasn’t acceptable with the pressure and the responsibilities that I had. I mean I was following her electrolytes, I was following her bed settings . . . that was how I was interpreting her status, not “Did she feel good or smile or open her eyes.” (ONM 818)

Advising Advising, as articulated by the participants, meant being supportive when involved in care, by repeating and reinforcing information, teaching how to navigate the health care system, and discussing the best management of the situation. It could be rewarding, but it could also involve the reinforcement of bad news, which had a negative impact on the double-duty caregiver. Double-duty caregivers were often asked to provide advice beyond their nursing scope of practice. Sometimes, they were asked to give advice without making an assessment, or based on someone else’s assessments, or out of their area of expertise. They were expected by family members and other health care providers to give advice although they were lacking the necessary resources (eg, diagnostic test results). Participants set limits by seeking second opinions or consulting with others. They preferred an opinion from another health care provider or someone else with whom they could confer, suggesting the lone activity of advising and assessing: My siblings do expect me to give care because they feel I’m the most informed. When my family doctor sees my mother he always calls me and says “[Shelly] what do you think?” . . . so I do get that aspect even from the family doctor. So yes, I am expected to give care by both my siblings, my mother, who will say “Well what do you think,

[Shelly]?” and even the family doctor who will say “what do you think [Shelly]?” (ONF 70)

Double-duty caregivers set limits by giving advice only when asked. However, in crisis or urgent situations in which it may be important to take action or inaction, double-duty caregivers were more assertive and directive: They were okay with me stepping back and what they do is just call or ask when they need help or some assistance or explanation of certain things that are happening, so that they can feel comfortable and that it’s okay to feel a little down one day . . . . I needed to be there to give guidance, help and assistance . . . now it’s more sporadic, putting out fires, more education, direction, what are her options. (ONM 2003)

Nurses generally gave advice with uncertainty, except when it was a safety issue. On a day-to-day basis, giving advice did not involve directing care, or making decisions for the care recipient, nor was it an opinion based on emotion or subjective data; it was based on objective data. When it was based on subjective data, it was not highly valued by health care professionals. “You go through your regular work day and . . . [you] give advice and you know that that’s the right advice. However, when you give advice to your parents, you’re always second guessing yourself . . . .” (BCF 3152) Advocating Advocating involved being assertive and taking action; it was “working the system.” It occurred when the care recipient did not have a voice, and when it was difficult to navigate the system. Advocating also meant not accepting medical advice/opinions and often required confronting fellow nurses, or not being in solidarity with other health care professionals. It often entailed advocating for the individual, not for social justice in general: Both my sister-in-law, who’s a nurse, and myself, really did have to at times use our nursing knowledge to advocate for a treatment for our mother with her chemo and radiation. And I think . . . that was the hardest part, advocating for her. When it

Copyright © 2014 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.

ANS874

April 25, 2014

5:21

Review Comments for Professionalizing Familial Care appeared to us the medical community was giving up, and we knew and we felt that she wanted [treatment], my Mom wanted to fight more. (NSF 2585)

Sometimes, advocating meant using personal resources and consulting and collaborating with colleagues to navigate the system: You get in the health care system, very savvy in dealing the health care bureaucracy and so using those skills to assist Mom, to know to call, what button to push to get things done . . . there were some care issues that I wasn’t happy with, then I went directly to a colleague to intervene on her behalf and get this fixed. (ONF 112)

Because the double-duty caregivers knew the system, they had expectations of how they could advocate for services: Everyone is trying to save a buck right? If they don’t ask, we don’t have to tell. But a lot of people don’t know . . . just like a lot of people don’t know a lot of medication is covered if they’re on home care if they’re low income. They’ve been paying out of their pocket. And hey, if I can save them five hundred bucks a month, well you know what I’m going to do. (ONM 695)

Collaborating Collaborating was the strategy used for purposefully aligning and cooperating with other unpaid and paid caregivers with the aim to provide appropriate and seamless care to an older relative. Therefore, collaborating was goal-oriented. It was characterized by working with others as a team member, using professional knowledge and skills as required to ensure quality care. Collaboration was refined in response to the increasing demands (expectations) of familial care. Because collaborating required a certain degree of discussion about how each member would participate, the boundaries within this strategy were often clear. Collaborating assumed various forms depending on the types and amount of supports that were available. For instance, for those nurses who had a strong family network (eg, available and interested siblings), their contributions could be in the form of accessing

125

information and bringing it to the “team” for mutual decision making. We’re a very collaborative family so that was the format that applied to all of us participating because there is no animosity between us and we really are a cohesive unit. So we all learned from the process that we made the decisions together and we’re constantly in communication by telephone, they’re just outside of (city). (ONM 904)

Collaboration is most typically found in the overarching strategy of “Making Connections.” Collaboration was mainly carried out by female double-duty caregivers for both themselves and for their elderly relative. The availability and appropriateness of supports in both their professional and personal domains shaped the participants’ satisfaction or dissatisfaction with the outcomes of collaborating. Some became frustrated with the formal care system and at times responded by becoming the “team leader,” hoping to accelerate or improve the care process. Although making connections was fundamental for collaborating, double-duty caregivers were often required to make explicit what they expected of such connections, therefore, simultaneously setting boundaries on their involvement in the care process. I got her permission and asked her if I could contact her family doctor, and talk to him about her situation and so she called him and gave him the permission to talk to me. So we [DDC and family doctor] collaborated together on the fact that she wasn’t on the proper medication for depression and he had not recognized that . . . because every time she’d go to see him he’d say to her “how are you” and she said “fine.” And so once I brought that to his attention then he was much more aware, he changed the medications and when I spoke to her last she said that she felt much better on this medication, and she felt more in control. So, that was helpful. (NSF 2571)

Consulting Consulting typically involved the provision of knowledge on the basis of a commodification or a way of “packaging up” information to give to someone else. Double-duty

Copyright © 2014 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.

ANS874

April 25, 2014

126

5:21

ADVANCES

IN

NURSING SCIENCE/APRIL–JUNE 2014

caregivers either used their own knowledge or others’ knowledge to fill in gaps and/or reaffirm information. Typically, double-duty caregivers initiated most, if not all, of the consulting with others. Consulting most often occurred when there was a realization that caregivers did not have the answers and that more knowledge was needed. This lack of knowledge differentiated “consulting” from “advising” because when doubleduty caregivers advised, they used their own knowledge. Consulting also included “coaching,” a way of using information to prepare the care recipient to interface with the system. In such cases, the double-duty caregivers anticipated possible reactions from professionals within the system and organized their family relative for the encounter. In the following example, the double-duty caregiver described how she consulted with her mother in preparation for an appointment with the family doctor. Her hip was really bothering her and I had told her “Well you need to talk to your doctor” cause she wanted to go back to the orthopedic surgeon and her family doctor basically told her “oh it’s just your sciatic nerve and the arthritis, you’ll just have to live with it” and I thought “no, this is not, there’s something wrong here.” [ . . . ] And so she went in, when she went in about her toe, I encouraged her to tell him about her hip. He said “let’s get an x-ray about your hip, it sounds suspicious” and of course he was right. I mean the shaft is practically coming through the side of the femur but when you don’t have any kind of medical background you can’t . . . you [need to] help people become advocates for themselves. (NSF 2585)

The double-duty caregiver in this example also described the “coaching” or preparation she did with her mother as a way of advocating for her mother. It is important to recognize, however, that although the goal of her consultation was ultimately to help her mother advocate for herself, the nurse in this example did not challenge or interface with the system in an advocacy capacity. Her approach was not to proactively take on system issues but instead to find ways of managing such issues through consultation.

Double-duty caregivers tended to be at an advantage over other caregivers because of their ease in consulting with other health care professionals. Some referred to their access to professional knowledge as a “professional courtesy.” In this case, access to or the ability to make connections with other health care professionals was a privilege that could be exclusively reserved for double-duty caregivers. It placed them at an advantage over other family caregivers because they could easily gain admittance to other professionals within the health care system, while bypassing some of the constraints that prevent the general public access. I’m interacting with the surgeons on a daily basis. Like I know the urologists because I work in the rooms. If anything happens orthopedically, I know the orthopedic guys. Anything happens Gen Surge wise, I know the Gen Surge guys. That’s the only good part about this is I’ve got connections in the hospital. So if he [father] needs to see a specialist, instead of waiting 6 months we might be able to get him in a bit earlier. Like my mom needed cataract surgery, she had a detached retina and I was able to phone the retinal guy direct, tell him what the problem was and I got my mother in about 3 weeks earlier than she would normally go in. (ONM 2112)

Consulting could be a double-edge sword for many double-duty caregivers. Double-duty caregiver described how being a source of information for his or her relative could be both worrying and satisfying. Furthermore, in this example, the double-duty caregiver was “being consulted” rather than consulting others. It makes me feel very good because I know I’m his main source of information. Although its long distance but I’m his you know consultant if you wish. It’s worrisome at times when I know I’m not there and I know that I can’t see things myself what’s going on but I call him and we talk about it so that’s the way we do it. (ONF 399)

Finally, in an attempt to avoid expectations of others on a professional level, some doubleduty caregivers concealed the fact of being a nurse, which ultimately undermined their ability to consult with others. One doubleduty caregiver described how acknowledging her professional status as a nurse could

Copyright © 2014 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.

ANS874

April 25, 2014

5:21

Review Comments for Professionalizing Familial Care actually be a disadvantage. “I don’t tend to tell people I’m a nurse because sometimes I find people just don’t like it or they don’t know, [other] nurses are bad for those things.” (NSF 2585). This quotation exemplifies how some resisted consulting with other practitioners to avoid further expectations of them on the basis of their professional status.

Coordinating In the strategy of coordinating, doublyduty caregivers forged relationships to accomplish an end goal. Coordinating tended to be task-focused, goal-oriented, and outcomedirected. This action typically mobilized knowledge moving beyond assessment to put knowledge into action. However, coordinating was often accomplished in a hierarchical manner, which is in contrast to being collaborative. The “coordinator” tended to lead and direct the group. The expectation was that “the coordinator” knew how to access information and had knowledge of the system. Coordinating was structured on communication. Delegation was a major tactic for coordinating, with unwanted tasks generally delegated to someone lower in the hierarchy. Inherent in the nursing process, coordinating tended to be an innate or subconscious action of double-duty caregivers. While double-duty caregivers made connections to accomplish end goals, there was less investment with others. However, there was less investment in the actual “connection” with the people to whom they related. This was unlike collaborating, which involved a deeper investment in the participation of others. It’s all just based on needs. I am very much in a preventative mode of thinking in that I’m constantly on the alert for any signs and symptoms of anything happening. And, I just make sure that everything is lined up, so that I know that all of the appointments are se. That as much as we can keep everything under control and try and prevent any issues or at least recognize them early before they become a problem. That’s sort of, at least that’s my goal, be on top [of everything], that’s happening everyday. (NSF 2562)

127

Coordinators were often “on call” or required to be available in a crisis, were often perceived as the main contact by others, and desired to be “on top of everything.” Coordinators tended to conference with other health professionals rather than family members, giving preference to objective knowledge. They were expected to have the final decision-making authority and were often accountable for any repercussions. Over time, the coordinator often experienced some kind of caregiver strain, either financially or emotionally. Double-duty caregivers had a certain degree of comfort in a coordinating role, because this strategy embodies many aspects of the health care system including hierarchy and deeper investment in outcome over process. Coordinating best exemplified the dialectic between Setting Limits and Making Connections, because it required double-duty caregivers to connect with others but then also placed strict boundaries on their contribution and were often narrowly focused on a specific task. This strategy did not rely on the synergy of the contributing members but instead was the sum of the group members’ parts. In summary, the cumulative effect of these 6 interdependent strategies contributes to the professionalization of family care over time. The nurses in this study employed strategies of which they were familiar in their professionalized practice. The participants described considerable overlap between the work they performed in their paid employment and the care they provided for their relative. Furthermore, they often crossed boundaries of care by utilizing the resources (information, professional, equipment, etc) from their professional work to facilitate their family care work. Despite these attempts, many nurses described being underresourced to provide the standard of familial care that was expected of them. This was further exemplified by their hesitation to advise and their preference to consult with others. Many double-duty caregivers did not feel adequately resourced to make recommendations.

Copyright © 2014 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.

ANS874

April 25, 2014

128

5:21

ADVANCES

IN

NURSING SCIENCE/APRIL–JUNE 2014

Moreover, the nurses in this study had difficulty escaping their role as a double-duty caregiver when both their professional and familial lives were consumed with care work.

DISCUSSION While there is a wealth of literature documenting the needs of family caregivers and health professionals separately, there is a dearth of research that examines these care-work domains in combination.6 Previous work by Ward-Griffin, 2004 examined the constant negotiation occurring between Setting Limits and Making Connections within the professional and familial domains of care. Setting Limits refers to double-duty caregivers’ resistance to the blurring of their familial and professional boundaries and includes nurses’ endeavors to demarcate their role as relative and nurse separately. Making Connections refers to doubly-duty caregivers’ acquiescence to their role as nurse and relative and using their connections to facilitate their role as double-duty caregiver. This current study illuminates how care is enacted within the CI between professional and familial caregiving and how it reifies professionalizing family care.3 The professionalization of familial care is much more comprehensive than the simple transfer of skills. It entails performing care as a nurse in a family caregiving capacity. An ethnographic study by Morgan and Krone18 assessed emotive improvisation of caregiver performances and found that those who work within the health care system constrain their emotions to enact professional detachment, and this can result into type of scripted submission for patients. Additional research that includes the perspective of the family, including the relative receiving care, would develop our understanding of how nurses’ performance affects other family members. Moreover, “professionalization” necessitates professional boundary setting, which is traditionally demarcated in a biomedical environment as a mechanism for professional authority and an assertion of exclusive

jurisdiction over skills and standards. The division of labor in health care is often maintained by the daily rhetoric and action related to these boundaries of practice. A similar division of labor occurs in family care when the nurse is deemed the only one capable of meeting the standards of professionalized familial care. This positionality can be simultaneously advantaging and disadvantaging for the double-duty caregiver. On one hand, the double-duty caregiver derives satisfaction in providing nursing care to their older relatives while on the other hand, it is can be very isolating for the sole double-duty caregiver in the family. This study examined the actual work and effort that nurses put into providing care to an older relative. It offers insight into the caregiving processes. The findings from this study revealed that familial care work by double-duty caregivers parallels closely the work performed within nurses’ professional environment. In fact, the work was at times inseparable. The nurses in this study applied the strategies they employed in professional practice to a familial setting. Unfortunately, for many of them, their paid and unpaid care work at times seemed endless. Because familial and professional care work were intertwined, and at times overlapping, it was difficult for double-duty caregivers to find reprieve from caregiving. Furthermore, while the care they provided to their relatives often mimicked the care they provided in their professional careers, they worked without the safety nets of labor laws such as employment standards or labor codes. This is not to suggest that nurses should qualify for caregiving conditions that privilege them over other caregivers. Within the current high reliance on family as caregivers, there is a health care system that increasingly provides a narrower range of services and often leaves social support and care to unpaid caregivers.19 This has increased only in recent years when people are returning to their homes from acute settings “quicker and sicker.”19(p335) In addition, with the provision of care as an unpaid task, the laws

Copyright © 2014 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.

ANS874

April 25, 2014

5:21

Review Comments for Professionalizing Familial Care and regulations that protect members of the labor market do not apply to any caregivers, including doubly-duty caregivers. Without proper regulations in place to ensure that families are not expected to provide care beyond their financial and social means, double-duty caregivers may be vulnerable to burden and/or underresourced. Loss of income and the cost of providing care for the relative, coupled with other stressors such as physical demands, impact health, particularly if financial resources are already being strained.20-22 It is imperative that we advocate for better caregiving policies that enhance health for all caregivers and recognize the laborious aspects inherent in caregiving. For example, this can be accomplished through the development of position statements and advocacy activities by nursing and other health professional organizations that are committed to genuine family-centered care. Nursing groups need to continue to support and form coalitions with groups such as the Canadian Caregiver Coalition to work to preserve the rights of all caregivers, including double-duty caregivers. Future research could test the utility and health effects of family-centered care to inform future best practice guidelines23 and resulting policies. Although this study did not examine family relationships in response to DDC, the issue of being “the professional caregiver” warrants further consideration from the perspectives of both the double-duty caregiver (with potential repercussions such as isolation) and the family. A study by Starc et al24 examined the elements of professionalization in nursing and found that professionalization can be understood as a human capital upgrading. And yet, little is known about how nurses use their professional status within their family. It is important to consider the family dynamic in response to privileging the “professionalization” as the expert form of knowledge and the outcomes for inclusion of other family members. The emphasis on care being grounded in expert knowledge may have unintended consequences for other family members who contribute other forms of relational

129

knowledge, such as an understanding of their relative. Historically, the professionalization of social welfare professions such as nursing has been described as problematic when laden with power struggles and status striving.25 The shift toward professionalization in unpaid caregiving seems to glorify what is perceived by the health care community as “competent care for free.” Furthermore, DDC can be socially coveted as a hybrid and professional unpaid caregivers—in others words, it can be appealing to have professional knowledge to provide familial care. And yet, while this study did not assess the quality of care delivery, many nurses described being unequipped to provide care without the resources to which they were accustomed in their professional environment. In addition, some expressed discomfort with engaging in care work for which they felt unqualified. For example, several discussed involvement in care work that was completely unrelated to their professional practice. While some principles of care applied, they did not feel at ease advising or assessing in many cases. Further research is needed to determine how professionalized familial care is akin to competent care, particularly given the limited resources nurses in this study described. This has implications for the colleges of nurses across Canada that have an obligation to protect the public and ensure competent care. There is a call to action for these colleges to engage in best practices for double-duty caregivers. Finally, consistent with Baines’14 body of research related to formal and informal unpaid workers, we found it particularly insightful that none of the caregivers in this study described their caregiving work as “pro bono” or work that was recognized outside of the familial realm. This may be attributable to the nature of the work of caregiving. However, it may also relate to family work. Additional research related to how other professions utilize their professional skills in a familial context would help enrich our understanding of the concept of Professionalizing Familial Care.

Copyright © 2014 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.

ANS874

April 25, 2014

130

5:21

ADVANCES

IN

NURSING SCIENCE/APRIL–JUNE 2014

CONCLUSION Any discussion of health human resource planning must recognize the intersecting roles that double-duty caregivers occupy. For some double-duty caregivers, the care work is endless. Our study findings illustrate that workplace, professional, and government resources to assist double-duty caregivers were minimal at best. Nursing colleges, associations, and unions are well positioned to advocate for nurses who constantly provide care work in both their professional

and familial lives. Furthermore, double-duty caregivers were expected to perform at a professional level of competence without access to the same resources supplied in a professional environment. Additional community resources such as home care services are needed to better support all family caregivers, including double-duty caregivers who take on professional tasks. The professionalization of familial care has implications not only for the nurse-professional within the family but also for the entire family unit.

REFERENCES 1. Ward-Griffin C, Brown J, St-Amant O, et al. Nurses negotiating professional-familial care boundaries: striving for balance. J Fam Nurs. In press. 2. Ward-Griffin C. Nurses as caregivers of elderly relatives: Negotiating personal and professional boundaries. Can J Nurs Res. 2004;31(1):92-114. 3. Ward-Griffin C, Brown J, Vandervoort A, McNair S, Dashnay I. Double duty caregiving: women in the health professions. Can J Aging. 2005;24(4): 379394. 4. Ward-Griffin C, Martin-Matthews A, Keefe J, Kerr M, Brown JB, Oudshoorn A. Development and validation of the double-duty caregiving scale. Can J Nurs Res. 2009;41(3):108-128. 5. Killien MG. Nurses’ health: work and family influences. Nurs Clin N Am. 2004;39(1):19-35. 6. Mills J, Aubeeluck A. Nurses’ experiences of caring for their own family members. Br J Nurs. 2006; 15(3):160-165. 7. Burke RJ, Greenglass ER. Hospital restructuring, work-family conflict and psychological burnout among nursing staff. Psychol Health. 2001;16(5): 583-594. 8. Ward-Griffin C, St-Amantr O, Brown JB. Compassion fatigue within double duty caregiving: nurse-daughters caring for elderly parents. Online J Issues Nurs. 2011;16(1):4. doi: 10.3912/OJIN.Vol16No01Man04. 9. Scott L, Hwang W, Rogers A. The impact of multiple care giving roles on fatigue, stress, and work performance among hospital staff nurses. J Nurs Adm. 2006;36(2):86-95. 10. Ward-Griffin C. Boundaries and connections between formal and informal caregivers. Can J Aging. 2002;21(2):205-216. 11. Oliveira M, Campos M, Padilha J, Pereira F, Sousa P. Exploring the family caregiving phenomenon in nursing documentation. Online J Nurs Inform.

12.

13.

14.

15. 16.

17. 18.

19.

20.

21.

22.

2011;15(1):137. http://ojni.org/issues/?. Accessed November 2013. Given B, Wyatt G, Given C, et al. Burden and depression among caregivers of patients with cancer at the end of life. Oncol Nurs Forum. 2004;31(6):11051117. Graziano WG, Habashi MM. Motivational processes underlying both prejudice and helping. Pers Soc Psychol Rev. 2010;14:313-331. Baines D. Seven kinds of work-only one paid: raced, gendered and restructured work in social services. Atlantis. 2004;28(2):19-28. Brown E. Assessing the value of volunteer activity. Nonprofit Volunt Sect Q. 1999;28(1):3-17. Charmaz K. Constructing Grounded Theory: A Practical Guide Through Qualitative Analysis. Thousand Oaks, CA: Sage; 2006. NVivo Qualitative Data Analysis Software. Version 9.0, 2010. Burlington, MA: QSR International Pty Ltd. Morgan JM, Krone KJ. Bending the rules of professional display: Emotional improvisation in caregiver performances. J Appl Commun Res. 2001;29(4):317340. Armstrong P. Health, social policy, social economies, and the voluntary sector. In: Raphael D, ed. Social Determinants of Health: Canadian Perspectives. Toronto, Canada: Canadian Scholars’ Press Inc; 2004:331-344. Connell CM, Janevic MR, Gallant MP. The costs of caring: impact of dementia on family caregivers. J Geriatr Psychiatr Neurol. 2001;14:179-187. Fast J, Forbes D, Keating N. Contributions and Needs of Informal Elder Care Providers in Canada: Evidence From Statistics Canada’s 1996 General Social Survey on Social Supports. Ottawa, Canada: Health Canada; 1999. Forbes DA, Neufeld A. Invited article: discourse: looming dementia care crisis: Canada needs an

Copyright © 2014 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.

ANS874

April 25, 2014

5:21

Review Comments for Professionalizing Familial Care integrated model of continuing care now! Can J Nurs Res. 2008;40(1):9-16. 23. Whyte NB. Nurses influencing health care policy: international perspectives. In: Young LE, Hayes V, eds. Transforming Health Promotion Practice: Concepts, Issues, and Applications. Philadelphia, PA: F.A. Davis; 2002:112-126.

131

24. Starc A, Pahor M, Ilic B. What makes nursing a profession: professionalization elements. J Soc Dev New Net Environ B&H. 2012;6(11): 3815-3821. 25. Wilensky HL. The professionalization of everyone? Am J Sociol. 1964;70(2):137-158.

Copyright © 2014 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.