Family caregivers play an important role in older adults' management of illness. Family caregivers are often defined as untrained family members involved in the care and management of an older adult's health (Bragstad et al., 2014; Bristol, 2016). Nonetheless, family members with health care training may find themselves in an informal caregiving role for an older adult relative or friend. Health care professionals, especially nurses, seek to balance professional caregiving roles with informal caregiving duties for spouses, older relatives, or friends (Salmond, 2011; Ward-Griffin, 2013). As family members become ill, health care professionals may find it difficult to separate professional training from responsibility for family members, blurring the line between being a health care professional and a family member (Salmond, 2011). The blurring of professional and family roles may result in role struggle. Role struggle may negatively impact the psychological distress health care professionals experience during hospitalization of a loved one (Giles & Williamson, 2015; Salmond, 2011; Ward-Griffin et al., 2015).
Although a health care professional may not be considered an untrained family caregiver, the health care professional acts in an informal, unpaid role. These individuals can be referred to as health care professionals as family caregivers (HCP-FCs) (Bristol, 2016).
Previous studies have focused primarily on the experiences of nurses who assume an informal caregiver role during hospitalization of an adult family member (Salmond, 2011; Ward-Griffin, 2013; Ward-Griffin et al., 2015). The focus on nurses' experiences in informal caregiving roles may not be representative of the experience of other health care professionals assuming multiple roles. Moreover, the unique experience of caregiving during intra-hospital transitions has not been previously explored. The current study reports selected findings relating to HCP-FCs from a larger study (Bristol, 2016; Bristol et al., 2018) regarding the experience of family caregivers during transitions of older adults occurring within an acute care setting. The purpose of this study was to describe the experiences of HCP-FCs during intra-hospital transitions.
Qualitative descriptive methodology was used to support understanding HCP-FCs' experiences during transitions occurring within a hospital setting by staying close to the language used by participants in describing their experiences (Sandelowski, 2000). Participants for the current study were drawn from a larger sample (Bristol, 2016; Bristol et al., 2018). In the larger study, recruitment took place at a university hospital in the Southwest, with participants recruited from medical-surgical, intensive care, and in-patient rehabilitation units (Bristol, 2016; Bristol et al., 2018).
Data collection included audio recording of semi-structured interviews and field notes. Participants were asked to describe their experiences during intra-hospital transitions, loosely following an interview guide (Table 1), and using prompts to invite participants to elaborate on their meanings and experiences. In the larger study, data collection continued until data saturation was reached. Data saturation is the point at which findings are redundant or no new findings emerge (Saunders et al., 2018). Methodology from the larger study is reported in greater detail elsewhere (Bristol, 2016; Bristol et al., 2018).
Sample Interview Guide
For the current study, interview and field notes data from participants who self-identified as health care professionals (N = 6) were analyzed separately to consider the role and involvement of HCP-FCs during transitions within an acute care setting. Following the methodology of the larger study, the researcher analyzed data from HCP-FCs' interviews using qualitative content analysis. Codes were organized into categories and themes. Authors (A.A.B., J.D.C.) discussed differences in use of codes and themes until a 95% consensus was reached (Bristol, 2016; Bristol et al., 2018; Elo & Kyngäs, 2008; Sandelowski, 2000). The criteria established by Lincoln and Guba (1985) were used to support trustworthiness. For example, credibility was achieved through biweekly team conferences between the first and third authors (A.A.B., J.D.C.) and the use of an audit trail.
As part of the larger study, human subjects protection approval was obtained from the Institutional Review Board (IRB). Prior to data collection, IRB approval was obtained, and participants received information regarding the study prior to signing consent. Participants were informed of their right to stop participation at any time without fear of any penalties and signed an informed consent form. Participants were informed they would receive a $10 gift card at the completion of the interview (Bristol, 2016).
From the recruitment of family caregivers (N = 10) in the larger study, six of those participating identified themselves as either a RN (n = 4), a certified nursing aid (n = 1), or a social worker (n = 1) during semi-structured interviews.
HCP-FCs were unintentionally recruited as the researcher sought to include a diverse sample of family caregivers across intensive care, medical-surgical, and rehabilitation units (Bristol, 2016). During collection of demographics, the researcher did not include inquiry into the participant's job or career background. Nonetheless, during the semi-structured interviews, participants self-identified career backgrounds and levels of experience regarding the health care system. A noticeable difference emerged between participants without a health care background and participants from a health care background. These differences emerged specifically as participants described their view of the caregiving and advocacy role during transitions. From these participants' experiences, specific themes emerged regarding the experiences of HCP-FCs in an informal caregiving role as their older adult relatives or friends transitioned between different units within an acute care setting. These themes included Insider Perspectives, Seeking Inclusion, and Role Struggle (Bristol, 2016).
HCP-FCs frequently shared that their professional training provided them with skills non–HCP-FCs might lack. HCP-FCs believed their insider perspective aided their ability as family caregivers during periods of hospitalization, even if they had not been in a traditional health care role for several years. From these experiences, the theme Insider Perspectives emerged. This theme can be further explained by two subthemes directly related to the data, which were: Health Care Expertise and Familiar Environment (Bristol, 2016).
Health Care Expertise. HCP-FCs frequently expressed that their knowledge of the health care system enhanced their ability to provide care and more skillfully navigate the hospital setting. Throughout the experiences shared, HCP-FCs shared feelings of relief in having a background in health care. For example, one shared, “At least I have some medical knowledge.” Another HCP-FC stated, “The normal layperson would not be able to carry through in the manner that I did because I had the knowledge and experience to do so.” HCP-FCs were grateful for their training and work experiences. HCP-FCs believed their knowledge provided an insider advantage into the care of the hospitalized older adult (Bristol, 2016).
HCP-FCs reported experiences regarding how health care knowledge supported their ability to evaluate the care provided by health care professionals during transitions occurring in care. For example, a participant shared how a health care perspective provided a different viewpoint than other family caregivers:
I have been around a long time in health care, so I've seen really bad transitions. So, in comparison, um, I think it went pretty well. If you were to ask them, my cousins, they may not agree. They may think there was glitches, but little do they know, those were minor glitches. So, with my experience, I can say I thought it went pretty well.
Another participant shared a transition experience, stating:
I don't think it was spectacular, but, you know, the act in and of itself, I've seen better, but it wasn't – there wasn't anything glaring that was – just caught my attention, like, oh, my gosh, this is bad, you know.
HCP-FCs believed they had separate knowledge from other family caregivers, which allowed them to more critically understand and evaluate care provided by health care professionals in an acute care setting (Bristol, 2016).
Familiar Environment. HCP-FCs reported different reactions than non–HCP-FCs to the environment of the acute care setting. For example, as reported elsewhere, non–HCP-FCs frequently addressed feelings of shock upon entry to the hospital, finding the hospital environment strange and intimidating (Bristol, 2016; Bristol et al., 2018). In the current study, HCP-FCs did not report similar negative experiences. Instead, HCP-FCs appeared more prosaic, sharing:
I think it's as good as it – I don't think it was horrendous. I just think, you know, we're kind of at the mercy of when a bed is available, which is, you know, we're waiting for a bed availability.
HCP-FCs appeared more accepting of the hospital environment and system practices than non–HCP-FCs (Bristol, 2016).
HCP-FCs shared positive incidences of health care professionals' actions. One HCP-FC shared:
I should give...a prop to the ED staff. Um, one of the directors actually went to every single patient's room that was holding down there and apologized for that and explained that there were no beds in the hospital. So, it's not like the patient was sitting there going, “Why am I not getting upstairs?”
HCP-FCs presented a more accepting viewpoint of the hospital environment, recognizing positive experiences and weighing their own experiences with worst case scenarios experienced during their background as health care professionals. In addition, HCP-FCs felt responsible for educating other non–HCP-FCs as to the realities associated with the hospital environment. One HCP-FC shared:
They thought it was bad...and I had to – I actually had to do a lot of talking to them about how bad it could actually be...and then they calmed down a little bit, but I think if they were being, uh, asked, they would tell you they didn't think it was so great at all. They would probably not say “pretty good” like I have. They would say bad, whereas I could say pretty good.
HCP-FCs felt responsible for aiding non–HCP-FCs as they struggled to adjust to the new environment. The comfort and understanding regarding the hospital environment represent a potential advantage HCP-FCs might have over non–HCP-FCs in care-giving roles during hospitalization (Bristol, 2016).
HCP-FCs reported feeling responsible for seeking involvement in the management of care as older adults were admitted to acute care settings. HCP-FCs discussed their inability to abstain from seeking clarification of health care professionals' actions and knowledge regarding the status of the older adult. The theme of Seeking Inclusion is further explained by two subthemes directly related to the data (Bristol, 2016).
The Need for Assertiveness. HCP-FCs reported their need to be assertive. Participants with a health care background believed that health care professionals were unlikely to volunteer information. For example, one participant shared:
I kind of just like to ask a few questions...I think they would've just said, oh, you know, something's come up that they didn't expect. It wouldn't be specifically this is where her hemoglobin is or this is where white blood cells are...I think I definitely got more information than the average person because I asked for more information.
HCP-FCs reported the need for assertive behaviors, even when they felt uncomfortable about these behaviors. HCP-FCs recognized the need to adopt assertive behaviors to plan for future care needs of the older adult.
HCP-FCs felt responsible to be assertive when they perceived fellow family caregivers were not being included in the care of the older adult. For example, one stated:
The daughters were...asking me how much longer, and, in fact, even before [the patient] got moved, how much longer do you think it's gonna be? So then I would call. I would call the ED [emergency department] and say, “I'm her niece. I'm in health care. You know, I'm just wondering if you could tell me how much longer this is gonna be,” and then I would text the daughters and tell 'em.
HCP-FCs felt responsible to ensure the rest of the family was included in information about the progression of care of the hospitalized older adult. HCP-FCs recognized the necessity of adopting assertive behaviors to ensure their family members received what HCP-FCs viewed as necessary information regarding the care and care outcomes of the older adult (Bristol, 2016).
Family Advocate. HCP-FCs also sought information as part of their role as the family advocate. HCP-FCs identified their role in supporting the older adult through periods of illness. One participant shared regarding an older adult relative's disease management, “She really needed somebody that understood what that was gonna be,” and another shared, “My role as a caregiver in the hospital because of my background was to make sure she was being taken care of appropriately in health care.” The knowledge base of HCP-FCs provided support to older adults and other family members.
HCP-FCs felt an obligation to step in, as they perceived that other health care professionals failed to address important aspects of care of the older adult. HCP-FCs advocated for the older adult, as they perceived deficiencies in care. For example, one HCP-FC explained:
I felt in the ED what was lacking a little bit is she needed fluid. She had all those mouth sores, so she wasn't drinking. And so they said, well, she can drink, but she wasn't. So I had to get involved in that, and that's where the health care person comes in. I had to go say, whether you think she should be drinking or not, she's not, and she's actually having signs of dehydration. So if you could please just hang some fluids, and they did do that.… I think if I hadn't been involved…I don't think she would've received fluids, and we may not have had the little bit more time we had with her.
HCP-FCs reported that it was meaningful to them when they intervened to support other family caregivers who needed assistance in advocating for their hospitalized older adult. Although not identified as an explicit and separate theme, satisfaction in their ability to support other family caregivers was implicitly reflected in HCP-FCs' narratives (Bristol, 2016).
Throughout the current study, HCP-FCs reported numerous incidences of role struggle between their professional identification as health care professionals and their role as informal caregiver during intra-hospital transitions. HCP-FCs reported feeling responsible to use their professional background as a tool in promoting care outcomes for their older relative. HCP-FCs frequently believed that when they drew upon their professional knowledge and sought information regarding the patient's status or the care being provided, their involvement placed them at odds with their fellow health care colleagues. This theme is explained by the subthemes Role Opposition and Disclosure of Background (Bristol, 2016).
Role Opposition. HCP-FCs felt torn between their professional colleagues and other family members involved in the care of the older adult. For example, one described the process of waiting for a bed to open so the older adult could transition to a new unit. The HCP-FC shared:
A couple of times I felt like some of the nurses were looking at me, like, well, you know, you should get this. I mean, and in fact, one said that to me: “You know how long this can take. You're a nurse. You know we don't have beds sometimes.” And I – I didn't feel like that was appropriate. I wasn't at work. I was taking care of a dying relative, and I – that sometimes made me feel a little bit uncomfortable.
HCP-FCs believed that colleagues expected them to react to situations as a health care professional, not as a family caregiver (Bristol, 2016).
Disclosure of Background. HCP-FCs also reported feeling conflicted regarding broadcasting their professional background during the hospitalization of the older adult. One participant stated:
They seemed to get kind of annoyed when I would – if I didn't tell them I was in health care...they would kinda figure it out, then they would get kind of annoyed, I think, that I didn't tell 'em, but then if I would say I was in health care, then I felt like they thought I was being a know-it-all.
HCP-FCs experienced conflict as they navigated older adults' transitions within an acute care setting. HCP-FCs viewed themselves as separate from health care professionals encountered on the different hospital units. Health care professionals appeared to not always view HCP-FCs as being in the family caregiving role. HCP-FCs struggled to determine what information they should share with other health care professionals regarding their training and background (Bristol, 2016).
In the current study, HCP-FCs recounted positive outcomes emerging from their ability to aid in the care of older adults and support other non–HCP-FCs. HCP-FCs felt duty-bound to support positive health outcomes of the older adult and expressed gratification when they were able to positively influence organizational care decisions. Moreover, HCP-FCs identified satisfaction in their ability to empower other family members, as well as how to work the system to ensure positive outcomes during hospitalization. Similar positive outcomes have been reported from the use of nursing knowledge to assess health of older adults, as well as seek resources and care needed by the older adult (Bristol, 2016; Mills & Aubeeluck, 2006).
The role struggle reported by nurses in family caregiving has been echoed in other studies (Boumans & Dorant, 2014; Clendon & Walker, 2017; Giles & Hall, 2014; Giles & Williamson, 2015; Salmond, 2011; Ward-Griffin, 2004). Nurses frequently report the need to insert themselves into the care of family members as they observe potentially substandard care, echoing other studies reporting how nurses felt obligated to step into caregiving roles (Ward-Griffin, 2004). Previous studies did not specifically consider older adult care recipients or focus on transitions occurring within an acute care setting (Giles & Hall, 2014; Giles & Williamson, 2015; Salmond, 2011; Taverner et al., 2016; Ward-Griffin et al., 2015).
Previous studies found incidences of reported neglect of older adult care recipients during periods of hospitalization (Taverner et al., 2016). Nurses, observing care provided by other health care staff, reported older adults were degraded and staff demonstrated ageist attitudes (Taverner et al., 2016). However, these findings were absent in the current study. In this study, HCP-FCs did not report concerns regarding the care provided by health care professionals. Instead, HCP-FCs recounted concern relating to the care coordination role of health care professionals and their changing attitudes toward the HCP-FC during intra-hospital transitions (Bristol, 2016).