The magnitude of stress burden on caregivers to an elderly parent is widely recognized, particularly when care provision is protracted, as in the case of dementia. Whether adult child caregivers provide protracted or sporadic care to an elderly parent, a key function many serve is healthcare advocate, interacting with parents’ health care providers, and seeking services on behalf of, or with, an elderly parent (Levkoff et al. 1999; Bull et al. 2000). The communicative success or failure of these medical interactions can have implications not only for the health of the elderly parent but also, by extension, the degree of stress burden experienced by the adult child caregiver (Levkoff et al. 1999). Studies documenting the challenges of communication between family caregivers and health care providers (e.g. Robison et al. 2007) raise the question of whether the medical help-seeking and medical encounter communication experiences of adult children caregivers who are also health professionals themselves could offer “expert” strategies of potential benefit to other caregivers, less familiar with healthcare systems and culture. To that end, we report findings from a focus group with middle-aged women who were registered nurses, and had assumed some degree of caregiving responsibility for an elderly, chronically-ill parent. While anecdotal reports of nurses’ experiences as patients exist, few studies have focused on the experiences of nurses (or other medical professionals) in providing and seeking care for a family member. Such an informed view of caregiving for an elderly parent could provide new insights into aspects of caregiving or medical help seeking which could be targeted for change.

The stated purpose of the focus groups was to explore women’s views of using assertiveness when medical help seeking for themselves, and the group reported upon here was a part of a larger research effort with older and middle-aged women across four ethnic groups, African American, Chinese American, Latino, and European American. Unexpectedly, all of the middle-aged European American women who volunteered for this group were also registered nurses (see recruitment details below). With these participants, the discussion centered almost exclusively on thoughts and experiences related to medical help seeking for an elderly parent, rather than themselves. After several unsuccessful attempts to re-direct the discussion group back to participants’ own medical help-seeking experiences, the moderator ceased re-direction attempts as per the qualitative approach of allowing informants to identify the most salient aspects of the topic under discussion (Sanjek 2002). Among these participants, help seeking for elderly parents was a more salient topic than help seeking for themselves. Thus it constitutes the focus of this paper.

Method

A qualitative approach was taken because it allowed us to obtain participants’ own descriptions of the factors relevant to effective medical help seeking, including their actual experiences attempting to obtain services from health care providers. Participants were recruited through signs posted at two large, urban community service organizations which provided social, health, homecare, and referral services to community members, including elders. The directors of participating organizations also made face-to-face invitations to potential participants to take part in a discussion group on what they like and do not like about talking with doctors, emphasizing that participation was completely voluntary. As mentioned above, all of the European American women who volunteered for this study were also registered nurses. (Minority women participants who volunteered for focus groups from these and other recruitment sites, represented a wider range of professional backgrounds and included individuals who were not employed outside of the home. Discussions in those groups did not center on help seeking for an elderly parent.) It is not clear why nurses only volunteered in the European American sample. It is possible that a disproportionate number of European American staff in these two sites were nurses. Participants were paid $25 for their involvement. A total of 14 nurses met for a 90 min session. The sample size is consistent with recommendations made in the focus group literature, although a sample size of 14 is often divided into two groups (Hurworth 1999). The group was led by the first author and audiotaped. The age range of participants was 45–55 years. All possessed baccalaureate degrees in nursing, and worked in an administrative capacity at recruitment sites. None were currently involved with direct care.

Once it became clear that the focal point of this particular group was going to be help seeking for elderly parents, our questions centered on: (i) what are key caregiving tasks performed by nurses for elderly parents (ii) what are the obstacles to performing these caregiving tasks, (iii) what strategies are used to overcome obstacles.

A limitation of focus groups is that they do not depict the frequency of beliefs in a population. Also, group members may influence each other (Morgan and Krueger 1993). It is important to think about focus group data as revealing information about individuals in a group, rather than the individual as a discrete entity (Adler et al. 1998). The topics of concern that are raised by a group may not be subject to a group influence effect, but the individual examples that are described may. Although focus groups involve looking at the individual within the group, we nonetheless tried to elicit maximum individual variation in order to identify “outliers”, i.e. informant perspectives or experiences that do not readily fit within emergent themes which help qualitative researchers test the generality of their findings (Miles and Huberman 1984). The moderator attempted to minimize group influence by emphasizing that they wanted to hear each participants’ unique point of view; by pursuing discordant views; and by encouraging participants to describe, as best possible, exactly what happened during actual events.

Data Coding and Analysis

A modified version of focused coding and grounded theory methods were used for data analysis, both of which are reproducible and scientifically rigorous (Strauss and Corbin 1990). Data were analyzed for themes that emerged within individual participant stories, and across stories presented in the group. Themes were derived by coding for: the repetition of specific words, phrases, and belief statements; use of language and general thought patterns; overall structure, and topics that dominated the discussion or are avoided (Luborsky 1994). Transcripts were also marked for evaluative clauses, in which participants evaluated a topic, thus expressing perceptions about factors shaping the topic, and personal/cultural beliefs about it (Strauss and Corbin 1990). Throughout coding, “negative cases” which did not fit emerging thematic conclusions were actively sought in order to refine the thematic categories in light of these cases.

Results

Caregiver Responsibilities

Theme: Caregiver as Health Educator

A primary focus of the discussion was concern about the failure of elderly parents to understand their own health conditions. A theme emerged about the need to educate parents about their health conditions due to either parental passivity (as reflected in the comment: “My mother takes no hostages in her own life, but when it comes to a doctor, she won’t ask a single question.”) and/or because doctors provided inadequate patient education. The illness around which participants commonly reported providing health education was type 2 diabetes. Participants reported that their parents did not recognize the seriousness of diabetes (due, in part, to poor patient education by doctors), and thus were lackadaisical in their self care, as seen in this example:.

My mother was diagnosed as a diabetic, so of course I said ‘what kind of diet are you on, how many calories?’ She said ‘oh, the doctor didn’t mention that.’ I said ‘who are you going to see for a podiatrist, you need to see a podiatrist, you know’. She said, ‘oh he didn’t mention that either.’ He didn’t mention that was her stock answer... and this was her physician who she really trusted. I called the doctor and got her into a diabetes education clinic, but I was appalled. She didn’t have a clue what to look for, a hypoglycemic reaction. Thank God the first time she had one I was with her. She had no idea what was wrong. She got pale and clammy. I walked into a restaurant, gave her a glass of juice, and she was fine. This is an intelligent woman we’re talking about here. It’s scary.

Participants with a diabetic parent reported regular telephone monitoring of the parent to see if s/he was keeping up with diabetes self care.

Theme: Caregiver as Advocate

Participants also reported serving as patient advocates if they believed a parent had received inadequate medical care. One participant reported frustration with her mother’s declining condition after a stoke, and felt that it was due to slack care on the part of the doctor. The participant, therefore, sought a visiting nurse for her mother in order to compensate for the doctor’s inadequate care. She described using her knowledge of healthcare systems to coax the doctor into submitting a Medicare request for a visiting nurse: “The doctor wasn’t receptive [to getting a nurse.] He wasn’t interested in it. So I said well I think her blood pressure is elevated right now, hint, hint, so I do think it will be covered [group laughter]. He finally got it.”

Although this participant revealed her own knowledge of healthcare systems to the doctor, there was a theme of concealing one’s status as a medical professional when initial contact was made with a parent’s doctor. The reasoning was as follows: If a doctor knew the participant was a nurse, he/she would provide minimal information to both the participant and her elderly parent which was problematic since, in the rushed climate of managed care, doctors were already providing too little information. As one participant explained: “If they know you are a nurse they assume you already know, and you may not.” Another participant added: “It’s different when you’re the patient or someone you love is the patient than when you’re acting in a professional role, that’s why I don’t tell them I’m a nurse. I want full information.”

Obstacles to Successful Caregiving

Theme: Generational Differences

One of the biggest obstacles to participants’ ability to effectively provide education and care to their parents had to do with attitudes they perceived parents holding toward medical issues and doctors. Parents were seen as members of a generation in which the prevailing view of doctors as “gods” (to quote a participant) meant it was disrespectful to ask them questions. As a result, elderly parents often did not understand the nature of their own illnesses, self care requirements, and/or the purpose of prescribed medications, as seen in this example:

My mother-in-law, she’s 85, and she’s very comfortable with not asking questions. She’s booked tomorrow for a renal study, and she has no idea why she’s having this. She said to me ‘why am I having this done?’ She’s old and she needs a lot of teaching. She needs intervention. I am the intervention, and now she understands. But she would have gone into that test without understanding it.

Theme: Excessive Trust

The elevated esteem in which elderly parents held doctors was attributed, by participants, to “excessive” trust. Excessive trust led elderly parents to follow medical advice that they did not understand, to remain ignorant about their medications, and/or to accept substandard care. The participant quoted above, whose mother-in-law was willing to undergo a renal study despite not understanding it, attributed this passivity to excessive trust: “My mother-in-law has a level of trust in her doctor that she’s developed because of, I don’t know what, because he’s got nice manners or something.” Another participant reported:

The trust can be so blind in older people. Trust is important, but there’s a difference between blind trust and....They give themselves over and say, ok fix me. As opposed to trusting the doctor enough that you feel comfortable asking questions. My mother trusted her doctor to the point where he almost killed her. It was in one of these walk-in clinics. He’s ordering meds and taking meds out. But she trusted him. Her blood pressure’s going boom, boom, boom. She would have been on her deathbed saying, oh he was a nice fellow, he did a good job. It is just the way she is.

Participants saw trust as appropriate if it aided patient assertiveness, but misapplied when it led elderly parents not to seek information about their illnesses or treatments.

Theme: Flawed Healthcare System

Although assertiveness was framed as an advisable patient activity, there was a theme of resentment that patients were put in the position of needing to behave assertively in medical encounters, particularly elderly patients. This demand on patients was described as a flaw of the healthcare system and its players. Managed care resulted in rushed, overworked physicians who resisted answering patient questions because of time constraints. As one participant explained: “I get sick of it. You really need to be assertive to get answers, and you really shouldn’t have to be.” One participant remarked “Assertiveness...is frowned upon by doctors. They see it as challenging, and can’t handle it. They have one foot out the door.” Another responded “This is not the patient’s fault. [Doctors] should know when they’re talking to a patient, especially an older one, that you need to explain things. It’s not the individual’s responsibility to know to be assertive.” Because the rushed healthcare climate required patients to be especially assertive in order to obtain information, it left elderly patients—who already had difficulty asking questions due to socialization—at double jeopardy for leaving the medical encounter with inadequate information. Hence, participants saw themselves as having to provide even the most basic health information to their parents.

Theme: Changes in Nursing Care

Peppered throughout the discussion were observations on the state of the nursing profession, particularly perceived shifts in the current focus of nursing care as contributing to poor eldercare. As one participant put it: “I was trained that a nurse was a patient advocate. But there are no advocates anymore. Not for the old ones or anybody. We’ve got to be advocates for our parents.” Another participant continued with an example of how inadequate nursing care pushed her elderly father toward a health crisis:

In the hospital where my dad was, it was hard to pin a nurse down to say what’s going on. You really had to run after them, and it’s a shame. Having done bedside nursing myself, you were always told you had to make sure your patients were informed. But that’s not going on anymore. My father needed to be informed and that wasn’t happening. He was bleeding, and the nurse comes in and says ‘oh he was a smoker’ and walks out. And I could see he was going into congestive heart failure. So I went down to the nurses station and said he’s going into failure, someone better get in here, fast. But the nurse made an assumption. If I wasn’t there for him, who knows. No one sat down next to him, asked him questions, looked at him, saw what was going on, gave him information.

A perceived shift from people-oriented care to task-oriented care in nursing created the belief, among participants, that hospitals could be especially unsafe places for their elderly parents.

Caregiver Strategies

Theme: Becoming Healthcare Consumers

To deal with the perceived passivity of their elderly parents, participants used a consumer metaphor as a teaching tool, trying to convince parents to demand quality care for their healthcare dollars:

My parents don’t feel that the doctor–patient is a consumer relationship. I said, ‘Mom if you go into a restaurant and they bring out food that is cold, do you sit there and eat it? No, you send it back. If you go to a doctor and you don’t know what he’s talking about, you keep asking questions until you understand. It’s not your fault. It’s your right’.

Another participant continued:

My mother said ‘I don’t like to bother him’, and I said ‘what do you think his job is? His job is to take care of you. You’re paying for the Mercedes he’s driving. You are a consumer. He’s not God.’ I said get rid of him, and she got a doctor she felt comfortable with.

Adopting a consumerist stance was reportedly difficult for elderly parents. Although these nurse participants considered a consumerist approach to medical help seeking the ideal, a theme emerged around the importance of parents knowing their own medical histories, particularly if they would were unable to think of themselves as healthcare consumers. Participants believed their parents should, at a minimum, understand their own medical history in order to protect themselves from medical errors. A part of the caregiving role, thus, included explicating parents’ medical histories to them so they, in turn, could report them to doctors when the need arose.

Theme: Imperviousness to Doctor Judgments

The combination of flaws with the system and parental passivity created an outlook about caregiving as an ongoing responsibility. As such, participants joked repeatedly about the need to be undaunted by doctor resistance to their advocacy on behalf of their parents. As one participant put it: “I harass the doctor until he does what I think should be done.” Another stated: “When I come in with my mother, the doctors probably roll their eyes outside the door and say ‘oh my God, she’s here. But that’s too bad.” Still another participant said: “You have to have a dialogue with doctors, but people get intimidated by them. They’re not omnipotent.” Behaving confidently and assertively, in the face of doctor resistance, was considered a key caregiver strategy.

Discussion

Nurse participants viewed assertiveness as an element of successful medical encounters. Assertiveness centered on getting medical questions answered, particularly in the face of doctor resistance. The need to act assertively, however, was also considered an unfair burden placed on patients in a managed care climate that is focused on the bottom line rather than patient well being. An “older-generation” value that emphasized doctor authority and patient passive trust led elderly parents to be unwilling to seek important information about their chronic conditions, self care requirements, and medications. In light of these two factors, e.g. managed care and older-generation beliefs, participants perceived caregiving for an elderly parent to pivot on two primary activities: education and advocacy. Education could be disease related and/or involve teaching elderly parents how to behave assertively and how to become consumers of healthcare. Caregiver advocacy involved interactions with doctors on behalf of a parent. Assertiveness with doctors, and imperviousness to their judgments, were described as essential caregiver skills, and associated with successful achievement of caregiving goals.

Despite the fact that participants reported ongoing efforts to educate their elderly parents about assertiveness, they lacked confidence that parents would actually make attitudinal and behavioral changes. This view of elderly patients’ limited capacity for adapting to the new managed care climate reinforced their belief that real solutions to eldercare problems lay not in patient education, but in repairing a healthcare system that prioritized financial goals over patient needs. Changes in the practice of nursing care, in which patient informational needs were no longer a nursing priority, and nurses being generally less visible in hospitals, were seen as a reflection of a skewed healthcare system. As a result of their insider understanding of the healthcare system, participants focused on familiarizing parents with their own medical histories, which they saw as affording parents some protection against medical errors.

Although we did not inquire whether the medical help-seeking strategies participants employed with and for their elderly parents actually reduced caregiver stress burden, we do know that the strategies were framed as successful. Parents became more informed, received better treatment, and had better outcomes in each of the examples provided by participants. The literature indicates that good caregiver–doctor communication can reduce caregiver stress burden (Haberstroh et al. 2006), thus, it seems likely that participants enjoyed stress reduction benefits around the particular incidents reported. It is possible that social desirability affected reports such that participants wanted to frame their help-seeking in a positive light, so omitted examples of failure experiences. These data do not indicate that nurse–family caregivers never experienced frustration in their advocacy efforts, but rather that, when using the particular help-seeking strategies identified, they successfully fulfilled their caregiver goals.

Indeed, two key strategies for ensuring adequate care and good outcomes for elderly parents emerged from the incidents reported: (1) familiarizing elderly parents with their own medical histories (including past and current medications) and (2) caregivers being impervious to doctor resistance or negative judgments about their advocacy. Both strategies appear to stem from an insider view of healthcare, in which the potentially serious consequences of patient ignorance of their own medical histories were fully understood by participants, and where doctors are known to sometimes make mistakes. Aiding family caregivers in seeing doctors in more human, fallible terms might help those who are sensitive to status differences to become better advocates. In fact, one aspect of the patient empowerment movement has been to try to balance perceived patient–doctor power differences by encouraging patients to be educated consumers (Herzlinger 1999; Kaye 2005), much as the caregivers here encouraged their elderly parents to become. These data suggest that similar efforts to empower family caregivers, including dispelling distorted perceptions of doctors, may be a worthwhile element of caregiver stress reduction programs.

The emphasis that nurse participants placed on elderly patients’ knowing their own medical histories seems well-founded given the health vulnerability of older people, as well as the fragility of America’s health information infrastructure which Hurricane Katrina recently exposed. When confronted by a personal health emergency or public disaster, individuals need to be able to depend on reliable access to their health information. Nurse participants understood the value of elderly parents carrying with them, either mentally or on a piece of paper in their wallets, information about their medical conditions and care. Personal health records (PHRs) are a relatively-new electronic application through which individual patients can document their medical histories, as well as manage and share their health information. Elderly patients may require assistance and adaptations to enable their use of PHRs. The data here reinforce the value of efforts to do so for both elderly patients and family members who help care for them. Finally, the data reported here indicate that nurses, who are also providing care for elderly parents, have unique insights about the consequences that the current system of healthcare delivery has on elderly patients, and targeted strategies for optimizing care within what they consider to be a flawed system. As such, they may be a particularly useful group to seek input from around eldercare practice and policy issues.