Journal of Gerontological Nursing

Caregivers' Perspectives of Placement

Janice Penrod, PhD, MS; Cheryl Dellasega, PhD, GNP

No abstract available for this article.

Caregiving is a common phenomenon in American society. As the demand for care escalates with age and infirmity, informal caregiving capabilities are often exhausted, precipitating admission to an institutional setting. Increased acuity of elderly patients at the time of discharge from the hospital has also led to an increased use of nursing home beds. In either situation, admission of an older adult to institutional care is often unanticipated and difficult for family caregívers. In this article, qualitative methods are used to investigate the experiences of caregivers and to develop a conceptual understanding of their experiences during placement. This understanding facilitates the development of welltargeted interventions to ease the stress induced by this process.

OVERVIEW

Horowitz (1985) has aptly described a historical perspective of family caregiving. From the 1930s into the 1950s, literature was dominated by themes of "The Abandoned Elderly." During this historical period, the isolated nuclear family became a distinctive feature of American kinship. Increased mobility, industrialization, and urbanization were identified as sociological influences on the family structure contributing to the perceived isolation of older adults.

As research in the 1960s began to challenge this myth, the phase of "Elderly as Family Members" emerged (Horowitz, 1985). During this period, research demonstrated the integration of older adults in family networks through which mutual aid and support was extended. But the sociological myth of abandonment was hard to refute. Early work by Brody (1985) referred to the myth of family abandonment in terms of a disparity between adult children's expectations of parental care versus reality. Shanas (1979) described this persistent myth as a "Hydra-headed monster," that is, a monster that cannot be killed.

In the mid-1970s, research began to focus on the caregiving relationships within families, termed "The Family as Caregiver" phase by Horowitz (1985). Historic work by Brody (1985) described the experience of having a dependent elderly parent as normative for individuals and families. Informal care provided by the family as a means of preventing or delaying admission to nursing home care became more evident.

Later, the role of the formal service sector in supporting the informal caregiving network became a prominent theme. This phase, described as "The Relationship Between Informal and Formal Care" (Horowitz, 1985), began to merge the formal and informal providers of elder care into a partnership of caring. The need for a coordinated continuum of services merging informal and formal care responsibilities and for providing easier transitions between the various levels of care were highlighted. Complicated policy and funding issues compound the difficulties inherent in the development of such a partnership, extending this phase into current rimes.

The rapid evolution of the current health care delivery system makes matters worse. Higher levels of acuity are required to justify admission to acute care than in the recent past. Once admitted, length of stay is minimized despite this increased acuity. The discharge adage commonly expressed is "quicker and sicker," meaning patients are discharged from hospitals earlier and with greater care needs than previously. New avenues for post-hospitalization care, such as intensive home nursing or short-term rehabilitation, are being used. Thus, care responsibilities shift across this evolving continuum of care, flexing the boundaries between formal services and informal caregiving.

Older adults are particularly affected by these recent changes in health care, as they frequently suffer comorbidities protracting the recovery phase following acute illness. The rehabilitation phase is extended and demand for resources is greater among debilitated older adults. For some, the family caregiving system garners resources to support necessary care, but for others the informal network is unable to meet increased care demands, and short- or longterm institutional care in a nursing home is the only realistic option. These short-term stays may then be extended as the level of recovery originally anticipated is not achieved or as the older adult suffers other "set-backs" that change the outlook for a return to supervised or unsupervised independent living.

The availability and contributions of informal caregivers of elderly family members cannot be under-estimated. Yet, it is evident that in this era of forming partnerships (as disease management, case management, and other attempts to streamline services has evolved), the development of a continuum of support is still a goal, rather than a reality. This is particularly evident when the issue of placing an older adult into long-term institutional care is explored.

Frequently, placing an older adult in institutionalized care is seen as a caregiving failure, or as described by Smallegan (1985), "There was nothing else to do" (p. 364). Matthiesen (1989) supports this perspective in her assertion that "our society perceives nursing home placement as a deviant act" (p. 11). Older adults receiving care often share such negative sentiments. Kosberg (1992) posits the two greatest fears faced by older adults - a fall in which they cannot get up and institutionalization. Mattimore et al. (1997) demonstrated that 30% of several thousand hospitalized elderly patients would rather be dead than live in a nursing home. These findings are particularly troubling, given a conservative lifetime nursing home use estimate of 30.5% across the elderly population (Laditka, 1998). Dellasega (1987) asserted that trends toward short-term rehabilitative stays in nursing homes would actually extend this form of care to the majority of older adults (age 65 and older) at some point in their lifetime.

The relinquishment of active, inhome caregiving to formal institutional care is commonly precipitated by escalating needs of the older care recipient (Dellasega & Mastrian, 1995; Penrod & Dellasega, 1998). The demands of caregiving may exceed the family's capabilities or willingness to provide needed care. Although pragmatically, placement into a more protective and supportive setting seems a logical progression, surrendering caregiving responsibilities to professionals is a difficult decision because of the "intense and often exclusionary bond between caregivers and receivers of care" (Ross, Rosenthal, & Dawson, 1993, p. 1533).

The decision to seek care from the formal system is quite difficult for most caregivers. Townsend (1990) reported 56% of the caregivers in her study (w = 81) agreed that placement was the most difficult problem they ever had to face, and 95% reported they had no alternative to placement. In another study (Dellasega & Nolan, 1997), even those caregivers who welcomed placement still felt ambivalent and saddened by the event.

Figure: Phases of the placement process.

Figure: Phases of the placement process.

The difficult and significant decision often is processed during a hospìtalization - a stressful situation with time demands that push a decision and expeditious transfer (Gold, Reis, Markiewicz, & Andres, 1995; Penrod & Dellasega, 1998; Prawitz, Lawrence, Draughn, Wozniak, 1991). Little is known about specific Stressors experienced by caregivers during this phase or others immediately surrounding the placement experience. The majority of studies have been conducted well after the event has occurred, which McFaIl and Miller (1992) note is a methodological limitation of current work.

The purpose of this research was to explore the experiences of caregivers as they process and act upon the decision to admit an older relative to a nursing home, and to derive phase-specific interventions to facilitate successful adaptation to this dramatic change in caregiving roles. The project was guided by two research questions:

* What are the phases of the process of placement as reported by caregivers?

* What interventions did the caregivers report to be most beneficial during these phases?

METHODS

In this study, data from two qualitative investigations of informal caregivers at different points in the admission process were integrated to permit an analysis of salient issues and needs across the process of placement. The first study contained data collected from caregivers who were making decisions about post-hospital discharge destinations of an older adult. Interviews occurred in the hospital setting, at the participants' convenience, and focused broadly on their experiences surrounding placement. Specific issues targeted were the decision-making process and shifts in the caregiving role through the period preceding and during hospitalization, and factors that hindered or facilitated their response to placement.

The second data set was from a study that explored how the consequences of placement were experienced by caregivers. These caregivers were interviewed within 6 weeks of the nursing home admission. The actual range of time since admission ranged from 5 days to 6 weeks, with a mean of about 3 weeks. Questions about their perceptions of both the process and the consequences of placement were asked. Detailed descriptions of both studies are provided elsewhere (Dellasega & Mastrian, 1995; Penrod & Dellasega, 1998).

Both studies received approval from a university-based institutional review committee. An internal review committee also approved the hospital-based study. Informants provided written informed consent prior to interviews. All interviews were audiotaped and transcribed verbatim. In addition, field notes were generated and also were included in the data sets.

Sample Characteristics

All participants were selfdescribed caregivers who were actively involved in the process of placing an older adult charge into nursing home care. Of the 17 caregivers participating, 14 were women. Within this group, relationships with the older adult for whom they cared included 8 daughters, 3 wives, and 3 sisters. The men (n = 3) were all sons. The caregivers ranged in age from 35 to 89 years, with about 60% younger than age 65 and 40% older than age 65. While the level of care provided to the older adult varied, all participants identified themselves as caregivers who were actively involved in the decision to place.

Analysis

These data (interview transcripts and fieldnotes from both studies) were combined and analyzed using a grounded theory approach explicated by Glaser (1978; 1992). This method is well suited for studying an experience that changes over time, so it was particularly effective for this analysis of a perspective of the placement experience. Grounded theory methods produce a theoretical framework of the lived experiences through a process of reiterative or cyclical analysis.

In this study, the investigators (both experienced geriatric nurse researchers) reviewed the data independently, focusing on theoretical phases occurring preplacement, during placement, and postplacement. Theoretical perspectives were derived by each, then discussed. Working as a team through analysis, they developed and refined an integrated framework based on the data.

Because these data were collected in previous studies, issues of saturation were of concern initially. Although each of the original studies achieved saturation for that study, the sample available for this secondary study was limited to the combined data set. However, because the initial studies were a part of a larger program of research, they were theoretically congruent and well focused on the process of placement. Both data sets were of good quality, and saturation was achieved.

FINDINGS

The caregivers* experiences of placement were conceptualized as a process encompassing six theoretically distinct phases encompassing the preplacement period, throughout the admission process and extending into the postplacement period. This model captures a process of conflictive decision-making because caregivers were processing options not appealing to them. They were confronted with limited alternatives for meeting the care needs of older adults, felt pressured to act, and then used strategies to reframe their decision in more favorable light. It should be noted that although all caregivers demonstrated movement through these phases, the duration of each phase was highly individualized.

Upsetting the Status Quo: A Crisis Emerges

Before the crisis, placement was not perceived as a step in the range of caregiving options. Rather, increased frailty, acute illness, or dementia upset the precarious balance of demands and resources precipitating a crisis. The escalation of crisis was at times related to a significant health event, for example a fall. A caregiver said:

She can't walk. She can't even stand with her own weight. She can't get out of bed to go to the bathroom, so, uh, we just can't take care of her under those conditions.

Another described a more continuous decline:

I was home alone with him. And it was...I won't say it was easy, it was very difficult. It seemed that is where he wanted to be and that's where I wanted him to be until it just became impossible.

Despite the discrete or continuous nature of the escalation, caregivers could identify a point at which the crisis began.

Deeming the Situation Inadequate: An Evaluation of Demands and Resources

At the onset of the crisis, caregivers began mobilizing their resources by evaluating the new caregiving demands in light of the amount of care they felt able to provide. It became evident that previous caregiving patterns would not suffice given the new crisis. At the same time, ominous reports were received from respected sources, such as physicians or nurses. One caregiver said, "The doctor told us she couldn't come home."

Input from professionals had a significant impact on the caregivers as they processed their options for care. Many suspected they would not be able to meet care demands, yet they tried to hold onto hopes of resuming the baseline caregiving situation, of "getting back to normal." Quickly, reminders of the escalated situation and personal capabilities permeated this hope. One caregiver said, "It's too much on me. I can't do it. I can't take care of myself hah0 the time. And I'm living with one daughter and her two kids and husband."

Experiencing Conflict: Ambivalence Between the Real and the Ideal

Caregivers reported a phase in which conflict predominated. They felt ambivalent, being torn between the reality of care and their image of an optimum situation. They had images of being the "idealized caregiver" - meeting the needs of the older adult, overcoming the odds, and achieving a new, manageable status quo of care. At the same time, they were pulled by the reality of caregiving demands, a reality often recanted by respected authorities with whom they were in contact.

One caregiver said, "Everybody discouraged me. Everybody! Even the nurses...But I just thought boy I'm gonna do it. I'll do it. Everybody, like I said, from doctor to nurses to just people on the street, so to speak, discouraged me and said 'you can't do it' and finally I figured, well, probably I can't." Another caregiver described her conflict, considering an idealized situation compared with her reality:

...'cause I've seen it in families, like if you have a husband and wife, maybe a couple kids at home, a couple teenagers, you split it up. I mean, there's like there's other people to interact with that person who needs that attention. And it's just too much for me. I was talking to a friend of...the other day, and she said they had their grandmother home for a year, and it was her and her sister and her brother, and they're all married. So there were six adults that were going to that house...plus home nursing. And we just don't have those resources.. .there 's a part of my brain that says, that's bad, you should be able to do this.

This conflict manifested as emotional turmoil and somatic complaints. As one caregiver described, "Depressed, I was-I've lost over 22 pounds in less than 2 months."

Reaching the Decision to Place: Transient Relief

The decision to place was a not a favorable option. It was perceived as the only thing to do, given caregiving demands. A short-lived experience of relief was reported, but even then the caregivers knew there were more difficult times ahead. One caregiver described his reaction after reaching the decision to place: "A feeling of relief-When you think that there's going to be an end to the tunnel." It quickly became apparent, however, that this relief was short-lived, and that in reality the "end of the tunnel" was far from this phase.

Caregivers struggled to maximize their relief by focusing on the positive aspects of their decision in an effort to justify it to themselves and others:

So, personal care homes [would be an oprion]...if she gets to a certain level, but (sigh) it seems right now that - this is the best choice for her 'cause she can still work with physical therapy and occupational therapy...! have the realization that ambulatory may not be where we are going with this. But if she can maximize...

The uncertainty of the older adult's prognosis or rehabilitative capacity enabled these efforts to find potential positive supports for their decision to turn to formal long-term care services.

Looking for a Place: New Hoops to Jump

Once the decision to place was reached, actions to process an admission were initiated promptly. The admission process was difficult for the caregivers to negotiate, and they felt minimal assistance and information was available, as described by this young daughter: "At one point, I did some like, you know, walking through the [phone book] and made some phone calls myself." Caregivers tried to maintain multiple roles: continuing caregiving throughout the older adult's crisis period, finding a place, and managing their own everyday life. For some, the application process was overwhelming.

The caregivers whose loved one was hospitalized felt pushed along a track by "the system." They felt paced by others - for example, by social workers who were overseeing the discharge planning for the older adult. But these caregivers could not totally relegate their responsibilities, resulting in confused role boundaries at times. They attempted to proactively take action, while at the same time they relied on professionals for oversight of the process. One caregiver related her reliance on "the system," a reliance that failed:

So, I criticized myself for being like, God that seems so obvious but I was caught up with everything else... I thought, "Okay, the system's gonna take you",..I would have followed up on it, had somebody expressly said that to me.

Limited bed availability and financial constraints were realized in this phase, and often caregivers discovered that their "first choice" in nursing homes was not feasible. One son expressed his realization:

Up to this point, she has always paid her way....But now it's just too expensive to do that. And, uh, that's the hardest part, knowing that - because you can't pay your way...I don't know how long she'll have to wait. There just aren't any beds available for her.

Caregivers described being forced to consider alternatives that were sometimes undesirable options. One caregiver said, "I looked at everything and anything [nursing homes], and it kept getting worse and worse." Given these constraints, the caregivers often framed the placement as a temporary first step - a means to deal with the immediate crisis, one that could be changed to a more optimum situation at a later time. Ambivalence over the permanency of the placement and describing of the institutionalization as temporary were both common.

Redefining the Caregiver Role: Creating a New Status Quo

Following the move to the nursing home, guilt seeped into the caregivers' perspectives and was countered by the positive aspects of placement. For some, guilt was a fleeting feeling, for others it was of greater duration. Their bolstering of the positive aspects of placement were challenged, creating emotional turmoil. Caregivers experienced a "let down" as the realities of long-term care contradicted their optimized expectations of placement. A daughter explained her feelings after placement:

I miss him tremendously... it's just like the whole world jumped off my shoulders... .Oh, absolutely it's the toughest thing there is. It really is. Because all the while your emotions are riding a rail right along with it. What if he would die during the night? What if this, what if that? So you're constantly up in the air.

The caregiving role did not cease on admission to the nursing home; rather, it changed form. Old patterns of caregiving were relinquished while new patterns of caregiving within a new system were explored:

I come over every day, twice a day. I can't get any work done or anything. My husband said, "All you talk about is your dad. That's all I hear." And I suppose they get tired of hearing it, but he's the main thing on my mind right now.

Isolation: Characteristic of All Phases

Throughout all phases of the placement, these caregivers had a sense of isolation. They felt alone in this process. For instance, one caregiver said, "In my circumstances, there wasn't anybody else that was going to assume [responsibility]." Even when spouses, other family members, or friends supported them as they processed the decision to place and the actual transfer of the older adult, they felt alone. Related to this perception, the caregivers sought validation from a variety of sources. They questioned, "Am I like everyone else?" and "Did I do the right thing?" Receiving feedback from others on the correctness of their decision was helpful. Unfortunately, friends were more likely to provide this feedback than professionals were.

IMPUCATIONS FOR PRACTICE

Based on the caregiver reports, this study provides support for the development of phase-specific interventions to ease the process of placement (Figure). These interventions would optimally be conducted in a variety of settings and by different health care providers. A recent study by Kane, Degenholtz, and Kane (1999) suggests case managers are in an ideal position to influence this process. (In that study, "case manager" was used to describe an agency title held by individuals with a 4-year college degree, and some were nurses.)

Before the phase of Upsetting the Status Quo reaches crisis, proactive education may help caregivers to open discussions centered on decisionmaking with the older adult. At this point, options can be framed more favorably. Caregivers experiencing excessive burden need more aggressive education and assessment because they may be the most conflicted over the possibility of placement symbolizing failure. Frequent reinforcement regarding institutional care as a caregiving option within a continuum of care, begun early in the caregiving career, may facilitate this difficult decision. Alternatives for non-institutional care support and financial planning options also should be discussed before caregivers reach the "overload" point. This is a phase when careful attention should be paid to the caregiver's physical and emotional health. Family physicians should be part of the team effort to enhance coping and promote health.

As caregivers evaluate demands for care in light of caregiving capabilities during the phase of Deeming the Situation Inadequate, a realistic assessment of presented demand and available resources would be useful. However, as Bowman et al. (1998) stated, nurses' perceptions of need are often quite different than the perceptions of family caregivers. It is critical that the informal caregivers are given adequate opportunities to evaluate and to discuss their perceptions of care demands versus available resources. The use of structured evaluation tools by family caregivers may prove useful in helping them frame this assessment. Then, objective counseling and information on specific care resources available in the community can be focused on specific care needs.

During the phase of Experiencing Conflict, some degree of ambivalence regarding caregiving options is normal, which caregivers need to know. Nurses should review with caregivers the demands and rewards of their specific caring situations, and alternatives to consider. Discussion of the potential for conflict between the realities of the caregiving situations and idealized desires should be undertaken. Because a majority of caregivers reported that changes in condition prompted their decision to place, identifying progressive changes in care demand may be helpful in alleviating ambivalence (Gold et al., 1995).

At the same time, supportive interventions, such as allowing time to express feelings and assessing and intervening in untoward reactions to stress, are applicable during this conflict. If these issues prove too difficulty for family members to resolve, they may need referral to professional therapists or counselors skilled in conflict resolution and geriatric care issues.

As the Reaching the Decision to Place phase is reached, caregivers reported that an acknowledgement of the difficulty of reaching this decision is helpful. Also, reinforcement of the appropriateness of the level of care for the older adult's needs helps to bolster the favorable nature of the decision. These strategies may serve dual purposes of reaching through the isolation and validating the experience of the caregivers. Support groups are an ideal venue for these types of interactions. Dellasega and Nolan (1997) reported that families found support groups conducted by the nursing home or community to be helpful during placement. If a local group is not available, national support groups may be helpful. For example, the Children of Aging Parents (CAPS) group offers a tollfree number for direct caregiver assistance and provides ongoing information, referrals, and support for nominal membership fees.

When Looking for a Place, caregivers need direct assistance with the application process and need to feel they have an advocate who is helping them negotiate the process. Easy-touse guides and computerized programs on nursing homes, personal care, and home health options can be developed for use at the caregiver's convenience, followed by discussion with a knowledgeable professional. Health care providers can acknowledge and respect the caregiver's multiple roles by being flexible in visiting or meeting times. For example, strategies such as extending the availability of key staff into off-shift hours demonstrate a tangible commitment to supporting caregivers (Bowman et al., 1998).

After placement has occurred, caregivers need an orientation to the facility and services as they Redefine the Caregiver Role. Again, flexibility is the key to demonstrating a commitment to supporting these caregivers. For some, group sessions may be effective, but consideration should be extended to those caregivers continuing to juggle multiple roles. Educating staff about family responses to placement may increase their awareness of the need to provide additional support during the early postplacement period. Including family in decisionmaking related to the older adult's care also may improve coping (Rowles & High, 1996).

Frequent, brief acknowledgements of the value of the caregiver's past and present contributions to the patient's care as well as continued validation of the correctness of the placement decision are more meaningful from professionals who are recognized as "experts." Drysdale et al. (1993) demonstrated that focusing on these types of issues improved nurses' relationships with "difficult" families. A program of commitment to caregivers is most effective when the entire facility, from administration to the bedside caregivers to the family members, are involved the program (Pillemer, Hegeman, Albright, & Henderson, 1998). Such an organizational commitment is long term, but the potential personal benefits to individual caregivers and to the overall satisfaction of staff, family, and ultimately residents appear to warrant serious consideration of the strategy.

Finally, interventions to maximize healthy coping strategies by the caregivers are indicated throughout the process. Caregivers need input on practical forms of stress management that apply to the caregiving situation. Dellasega (1990) developed such a program for active caregivers and demonstrated improved coping through use of strategies such as value clarification, reframing, relaxation, assertiveness training, and time management. These types of supportive strategies are useful throughout the caregiving trajectory and will serve caregivers beyond this period of crisis.

FUTURE RESEARCH

This study developed the process of placement from the perspective of informal family caregivers. Strategies to ease the process were derived in a phase-specific manner to facilitate well-focused, targeted interventions. The explication of these interventions enables further research on the effect of these supportive interventions on easing the duration and intensity of this difficult process.

Several other research questions arise from this study. Perspectives of professionals involved in the process of placement would further extend the repertoire of interventions to ease the process. One issue is the degree to which the interactional styles influence the decision to place because in this study nurses and physicians did not appear helpful to families. Early work by Taylor et al. (1989) documented differences in interactional styles used by physicians and nurse practitioners attempting to influence decisions in clinical settings. This work supports further investigation into the series of interactions surrounding the placement decision.

The preferences and involvement of the older adult in the placement process also warrants further attention. These data and studies by others (Williams, 1992) indicate that older adults may want to take a more passive role in making important health care decisions. Understanding the roles assumed by older adults in decision-making processes is key to understanding the caregivers' and professionals* roles in these processes.

A final, more global question arises from these analyses: Whose opinion counts most in influencing decisions about long-term care? It is not clear whether caregivers in this study were well advised about options, nor if their opinions and values were considered. Physicians were especially important authority figures and their recommendations, which tied directly to medical reimbursement, were often taken as a decree.

The continuum of alternative care options changes as communities work to provide intensive home care options. This shift in available services, in turn, affects the appropriateness of given levels of care delivery systems for particular care needs. So, not only care demands of the older adult, but also the availability of community services weighs heavily on determining the best option for care for an individual and caregivers. This is a dynamic issue calling for ongoing communication among providers.

Caregiving challenges will escalate in the coming decades as the number of older adults requiring ongoing support increases. Assistance for families who are struggling to make decisions directly impacting their health as well as their elderly relative's well-being is critical Health care providers must take more aggressive action to form alliances with elderly individuals and their significant others. Insight into the process of placement and its inherent Stressors enables the implementation of phase-specific interventions that can help alleviate the difficulty of this life event.

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