Family caregivers report that the decision to place a loved one with dementia in a nursing home is one of the most difficult and painful decisions they will ever make (Fink & Picot, 1995). As one spousal caregiver explained, "It was easier to bury my wife than to place her in a nursing home" (Dellasega & Mastrian, 1995, p. 123). While caregivers may struggle with this decision, the insidious progression of diseases like Alzheimer's disease dictates that the decision most caregivers must face is not if placement should occur, but when placement should occur. Consequently, when many caregivers decide they can no longer provide care at home, it is often in the context of a sudden crisis. This results in a "crisis placement" that catches everyone poorly prepared (Chenitz, 1983; Dellasega & Mastrian, 1995).
Nurses who work with older adults with dementia in the community are aware of how difficult it is for family members to make placement-related decisions, and need research-based information to help families make these decisions. However, little research exists on the process whereby caregivers make the difficult decision to place a family member with dementia - or what factors enable certain family members to make the decision more easily than others. The purpose of this qualitative study is to explore the factors influencing caregivers' decision-making process related to placing an elderly family member with dementia in a nursing home.
REVIEW OF THE LITERATURE
While the lifetime risk of being placed in a nursing home has been estimated at between 27% and 30% for older adults (Liang Si Tu, 1986; Murtaugh, Kemper, Spillman & Lepidus-Carlson, 1997), eventual instirutionalization is a near certainty for individuals with a progressive dementia like Alzheimer's disease (Wilson, 1989; Zarit & Whitlatch, 1992). Caregivers of these individuals often fail to appreciate this near-inevitability of placement, and consequently agonize over the decision of whether or not to place.
In an effort to better understand the event of nursing home placement, a large body of research has documented the various risk factors or predictors of institutionalization. While various care-receiver characteristics appear to be useful predictors (e.g., dependence in daily activities [Aneshensel, Pearíin & Schuler, 1993; Montgomery & Kosloski, 1994], being without a spouse [Colerick & George, 1986; Morycz, 1985], needing 24 hour supervision for wandering and forgetful behaviors [Chenoweth &. Spencer, 1986; Smallegan, 1985]), caregiver characteristics appear to be the more important predictors of placement. According to Fink and Picot (1995), these caregiver characteristics include:
* An initial desire to institutionalize the older adult (Deimling & Poulshock, 1985; Pruchno, Michaels & Potashnik, 1990).
* Short or very long duration of caregiving (Montgomery & Kosloski, 1994; Pruchno, Michaels Sc Potashnik, 1990).
* The caregiver's gender (Colerick & George, 1986).
* Decreased support from friends (Colerick Oc George, 1986).
* Lack of perceived rewards (Montgomery OC Kosloski, 1994; Pruchno, Michaels & Potashnik, 1990).
* The caregiver's health (Deimling & Poulshock, 1985; Montgomery & Kosloski, 1994).
* The caregiver's relation to the older adult (i.e., adult child versus a spouse [Colerick & George, 1986; Lieberman & Kramer, 1 991 ; Montgomery & Kosloski, 1994]).
* Caregiver role strains (Aneshensel, Pearlin & Schuler, 1993; Lieberman & Kramer, 1991; Montgomery & Kosloski, 1994).
Although research offers nurses information about the predictors of nursing home placement of older adults, much less is known about the process caregivers use to make the decision to place family members, or the kinds of factors which make this process easier or more difficult for family caregivers (Colerick & George, 1986; Pruchno, Michaels & Potashnik, 1990; Zarit & Whitlatch, 1992). It is this type of information that would be valuable for nurses working with families faced with making difficult placement decisions (Fink & Picot, 1995).
Only two studies, both qualitative, have examined the actual decisionmaking process of nursing home placement. Dellasega and Mastrian (1995) interviewed seven caregivers retrospectively about the process of deciding to place an elderly family member in a nursing home. Because this was a retrospective study, caregivers were describing the process of placement decision-making after they had placed the care-receiver.
Four themes regarding this process emerged from their study:
* Singularity (i.e., the caregiver being the single decision-maker).
* Crisis escalation (i.e., the placement occurring because of a crisis).
* Conforming to the idealized caregiver (i.e., needing to view one's self as a perfect caregiver).
* Peer validation (i.e., using friends to make the decision).
Another retrospective study by Fink and Picot (1995), also asked caregivers (N = 10) to describe the decision-making process after placement had occurred. While the authors reported no themes, they did report that caregivers felt they often had to make the final decision on their own, despite efforts to involve the carerecipient and professionals.
While not expressly examining the process of placement decision-making, a grounded theory study by Wilson (1989), documented how caregivers coped with "negative choices." Of these choices, the most difficult negative choice was the decision to relinquish care to a nursing home. Wilson (1989) calls this process of relinquishing care "turning it over." Caregivers described this process as a "dreaded eventuality," and bemoaned the "paucity of acceptable alternatives" to nursing home placement (p. 98).
While the studies by Dellasega and Mastrian (1 995), Fink and Picot (1995) and Wilson (1989) are useful, they offer only an initial understanding of the placement decision-making process, and fail to identify factors that might influence caregivers' experience of the process. Therefore, more information must be known about what makes this difficult process easier for some caregivers than for others (Colerick & George, 1986), and how nurses might best support family caregivers as they move through the decision-making process. This study offers an exploration of the factors influencing the ability of caregivers of family members with dementia to make decisions related to nursing home placement.
This exploratory, descriptive study used qualitative methodology to examine the decision-making process of caregivers considering nursing home placement of their family member suffering from dementia. This methodology was chosen because it best allowed an in-depth exploration of the caregivers' decision-making process, and because it contributed to the few existing qualitative studies of caregivers and how they relinquish care (Boykin & Winland-Brown, 1995; Kuhlman, Wilson, Hutchinson, & Wallhagen, 1991).
Qualitative methods may be a more appropriate choice for use with caregivers because these methods give caregivers a chance to voice their stories and concerns - as opposed to silently completing a lengthy quantitative survey (Hagen, Gallagher & Simpson, 1997). Finally, because the majority of family caregivers are women (Bunting, 1992), qualitative methodologies may be the most appropriate choice of research design from a feminist perspective (Harding, 1987). That is, many women have rejected the traditional scientific approach as "alien expertise" due to its tendency to devalue such things as subjectivity, inner experience, morality, internal knowledge, and emotionality (Field-Belenky, McVickerClinchy, Rule-Goldberger, & Mattuck-Tarule, 1986).
The purposive sample consisted of five individuals caring for a family member with dementia at home. Recruitment of participants occurred through a geriatric outreach program in a large, urban Canadian hospital. In consultation with nursing staff, prospective participants were identified and contacted by telephone to explain the purpose of the study and to request participation. The selection criteria for inclusion in the study were:
* Caregivers must be caring for an older family member (older than age 65) with dementia.
* Caregivers must be living in the same residence as the family member with dementia.
SELF-RANKINGS OF PLACEMENT DECISION-MAKING FACTORS BY CAREGIVER
* Caregivers must be the primary source of care and decision-making for the family member.
* Caregivers must be considering nursing home placement of their family member, but have not yet made a formal application for placement.
A human subjects review committee reviewed and approved the study.
Recruitment and data collection took place over a period of 2 months. Data collection ended after repeated indepth interviews with five participants, when the point of data saturation was reached. Of the sample, four participants were female, one was male. They ranged from 34 years to 72 years in age. The sample included two daughters, two wives, and one son.
After caregivers agreed to participate in the study, the researcher made arrangements for an initial interview in the caregiver's home. During the interview, the researcher reviewed the purpose of the study and obtained written consent. Each of the caregivers participated in four, 45-mínute interviews, except for one spousal caregiver, who consented to only three interviews.
The researcher began the initial interview by inviting caregivers to describe their process of deciding about nursing home placement of their family member with dementia. Probes regarding factors which caregivers felt affected the decision-making process were then asked (e.g., "Can you give me an example of how that affected the way you decided whether or not to place your father/mother/husband in a nursing home?").
During the second interview, the interviewer encouraged caregivers to further discuss this topic, and give further detail on factors affecting the decision-making process around nursing home placement. The third interview completed the discussion around placement decision-making. The researcher also used this time to present and receive feedback on the initial findings and grounded theory. During the final interview, the revised findings were presented to the caregivers, and caregivers were encouraged to rate themselves on the various factors that emerged from the interview data. The investigator tape-recorded all interviews with the participant's permission, and transcribed the tapes verbatim.
Data was analyzed concurrently with data collection, using the constant comparative method (Glaser & Strauss, 1967). While reviewing the initial transcripts, the author coded the data into as many initial categories of analysis as possible, focusing on factors appearing to influence the placement decision-making process of family caregivers. The author created categories using caregivers' words, as well as catagories emerging from concepts describing the data. As new data were added to existing categories, they were compared with previous pieces of data in the same category for accuracy and fit. Memos containing definitions and theoretical notes were added to each category as they emerged. Categories and memos were modified as needed, as new text either confirmed or contradicted existing categories. Categories were combined and reduced to minimize the number of categories, and the analysis approached theoretical saturation (Glaser & Strauss, 1967).
At the end of the second interviews, tentative categories and a developing tentative theory (Burns & Grove, 1993) emerged from the data analysis. During the third interview, caregivers gave feedback on these categories, which helped further refine the emerging theory. During the final interview, the author presented caregivers with the theory on placement decision-making they helped create. Caregivers rated themselves on the presence (low, medium or high) of various factors (categories) in the theory, and on their overall ability to make decisions concerning placement.
Factors Affecting the Placement Decision-Making Process
Caregivers spoke at great length about the decision-making process related to placing their family member in a nursing home, and about the factors making the process easier or more difficult. While all caregivers reported that making such a decision was difficult and heart wrenching, differences among caregivers were noted in terms of their relative abilities to make this difficult decision. For example, one daughter, who rated herself as "high" in her ability to make placement-related decisions, stated:
Figure 1 : Model of caregivers' placement decision making (factors related to placement).
You know, as I listen to myself talk, I realize 1 guess I've already made up my mind. While Pm not happy about it, there's no sense beating myself up over and over again - Mom needs to go into a home, and that's that.
On the other hand, a spouse, who rated herself as low in this ability, stated:
I know I'll never be able to make the decision - someone will have to make the decision for me, even if it means coming by with an ambulance and carting him off to the nursing home. There's no way I could live with myself if I put him in there.
As data analysis progressed, six inter-related factors emerged which appeared to influence caregivers1 differing abilities to make placementrelated decisions. These factors were:
* Independence in relationship (i.e., the degree of independence in the relationship between caregiver and care-receiver).
* Perceived presence of others (i.e., the degree to which the caregiver perceived others being present for assistance and support).
* Fear of loneliness (i.e., the fear of loneliness the caregiver felt or anticipated upon placement of their family member).
* Negative nursing home attitudes (the presence of negative attitudes towards nursing homes).
* Sense of existential self (i.e., the extent to which caregivers saw themselves as having a distinct meaning and purpose in life apart from caregiving).
* Guilt (i.e., the presence of caregiver guilt that he or she was not doing enough).
Rating Factors and Theory Building
In the final interview, caregivers were asked to rate their ability to make placement-related decisions, and to rate themselves on the various factors affecting placement decisionmaking that had emerged from the data. These self -ratings were placed in a format that allowed easy visual comparisons (Table). This visual representation of the various factors and caregivers' self -ranking of them, allowed for initial speculation about positive and negative potential relationships between the factors affecting caregivers' ability to make decisions regarding placement. For example, caregivers who rated themselves high or low in their ability to make placement related decisions also tended to rate themselves correspondingly in their sense of existential self (a positive relationship). In contrast, those caregivers who rated themselves high in their ability to make placement related decisions also tended to rate themselves low in their fear of loneliness (a negative relationship).
Using the various relationships between factors emerging from, the Table, the factors were organized into a conceptual map (Burns & Grove, 1993), shown in Figure 1. This conceptual map is a visual representation of how the various factors might influence caregivers' self-reported ability to make placement-related decisions. As seen in Figure 1, arrows indicate proposed directions of association between factors, and positive or negative signs indicate the nature of the relationship. A positive relationship was proposed in the conceptual map if at least three of the five caregivers demonstrated congruence among high and low self-rankings for both placement-related decisionmaking and the factor. For example, at least three out of five caregivers who ranked themselves as high or low for placement-related decisionmaking, also gave the same ranking for "perceived presence of others." The conceptual map shows a negative relationship if at least three of the five caregivers rated a particular factor in the opposite direction from rankings for placement-related decision-making. For example, at least three of the five caregivers rated their decisionmaking ability as high, but rated their guilt as low. As the unidirectional arrows indicate in Figure 1, the conceptual map suggests that the various factors influence the ability of caregivers to make placement-related decisions, not vice versa. The conceptual map also shows positive and negative relationships between the various factors. Figure 2 presents these proposed relationships. As the bidirectional arrows in Figure 2 indicate, these factors could influence each other. For example, more independence in the relationship might reduce a caregiver's fear of loneliness, or vice versa.
Factors Within the Theory
Each of the six factors will now be discussed, including their proposed relationship to caregivers' overall ability to make placement-related decisions, and important relationships to other factors in the theory.
Independence in relationship. This factor represented data describing the degree to which the relationship between caregiver and carereceiver was characterized by independence. For example, one woman, who described herself as very able to make effective decisions, described her relationship with her husband (carereceiver) as quite independent:
I guess I've always had to rely basically on myself, in our marriage he's never really taken a big part.
In contrast, another woman, who described extreme difficulty in making decisions about her husband's care, described a marriage relationship considerably more enmeshed:
He always made the decisions for the two of us... now 1 don't know what to do.
Similarly, a daughter described her relationship with her mother as follows:
I've always gone to my mom whenever I needed anything - I would never do anything without telling her first.. .now look at the shape I'm in!
As Figure 1 indicates, more independence in the caregiving relationship leads to greater decision-making ability. There is a positive association between independence in the relationship and perceived presence of others and sense of existential self. A negative relationship exists between independence in the relationship and fear of loneliness (Figure 2).
Figure 2: Model of caregivers' placement decision-making (relationships between factors).
Perceived presence of others. This factor encompassed data reflecting the degree to which caregivers perceived someone else (usually family or friends) as being available for them in times of need. For example, in describing the numerous people that assisted him in the care of his mother, a son stated:
...these aren't just strangers helping us out.. .these are people my mother has known practically all her life - it's a very tight-knit church, and they always try and help each other out whenever they can.
In contrast, a daughter caring for her mother described her sense of abandonment by her siblings:
I think it has something with me being the only girl in the family... there's my three older brothers, but like I said before, they really haven't helped that much. If anything, I have to protect mother from them.
Most participants stressed the importance of perceived support as opposed to actual support from family and friends. As one woman described her children's support:
I don't actually call them that much, but just knowing that they are there is a tremendous source of help.
This perceived support appeared important for this caregiver as she grappled with her decision.
As Figure 1 demonstrates, greater perceived presence of others is associated with an increased ability to make placement-related decisions. This perceived presence of others is also related to several other factors in the theory. There is a positive association with independence in relationship and sense of existential self, and a negative association with fear of loneliness (Figure 2).
Fear of loneliness. The fear of loneliness - particularly the fear of loneliness after placement of their family member - appeared to play an important role in placementrelated decision-making. As the one woman who rated herself high on this factor explained:
But you know, to place a man doesn't really solve things.. .You would think it would be a relief, but I think you just trade one thing for another. Then you would have intense loneliness, and I guess that's what I'm afraid of. I know I'd rather have what I have now than that kind of crushing loneliness.
As a result of this real fear, this caregiver reported feeling paralyzed in her ability to make any important decisions regarding her husband's care.
In contrast, another caregiver reporting both a high perceived presence of others and a high sense of independence in her relationship with the carereceiver, reported little or no fear of loneliness. In her own words,
No, that (being lonely) doesn't worry me...in fact, that's been the least of my worries. As I told you before, he's always been so quiet and withdrawn, and his Alzheimer's has made that much worse. No, if he has to be placed, I won't let fear of being alone stop me. I have too much catching up on my own life to do...I won't have time to be lonely.
Thus, fear of loneliness had a negative association with caregivers' ability to make placement-related decisions, as Figure 1 demonstrates. Fear of loneliness was also related to other factors in the theory. As Figure 2 shows, there were positive associations between fear of loneliness, negative nursing home attitudes, and guilt. Negative associations existed between sense of existential self, independence in relationship, and perceived presence of others.
Negative nursing borne attitudes. While all caregivers disliked the idea of placing their family member in a nursing home, this factor reflected the extent to which caregivers had particularly negative attitudes towards nursing homes. Ah1 caregivers feìt that the more negative opinion one had of nursing homes, the more difficult it would be to even consider the decision to place a family member in one. Those caregivers previously using formal respite care generally had a more positive attitude toward nursing homes and the possibility of having to ultimately place their family member in such a facility. One exception was a son who, although having previously used respite services for his mother, adamantly wanted to keep his mother out of one of those "warehouses:"
You know, it's not just anybody, it's my mother that's going into one of those homes. I know at those places that it's the last stop for people, and a lot of the staff there know that too, so they don't really care. Everyone there is going to die there - you know those places are just warehouses until people die.
For this son, these strong attitudes towards nursing homes made any kind of decision about placing his mother in one extremely difficult.
Figure 1 shows that negative attitudes towards nursing homes have a negative impact on caregivers' ability to make placement related decisions. Also noteworthy is the positive association appearing to exist between negative nursing home attitudes and caregivers' fear of loneliness (Figure 2).
Sense of existential self. One of the more difficult factors to define was the sense of existential self. Yet, this factor emerged as perhaps one of the most important factors influencing caregivers' ability to confront and make placement-related decisions. This factor reflects a complex process within caregivers, stemming from the profound realization that their family member is dying. This realization was prompted by the decision-making process around nursing home placement, which caregivers understood as the "last stage" before their family member's ultimate death. This factor reflects caregivers' ability to "pull apart" from the family member with dementia, and "pull into" themselves, to question what life means to them, and what meaning life is going to hold without the care-receiver.
The crisis of having to decide about nursing home placement set off a chain reaction of other psychospiritual concerns, leading to what could be termed an "existential crisis." That is, a family member's fatal disease started a process within caregivers where they began to re-examine their own mortality, the meaning Ufe held for them, and their responsibility for their own life. The brevity and frailty of IHe came into sharper focus, as did questions about what purpose life would hold once the caregiving role disappeared. As one spouse stated:
You might say that I've begun to realize that I'm entitled to my freedom [italics added]. As you can probably see, I don't have much freedom in my present situation. It's not that I don't love him, or that I have all sorts of resentment towards him.... But I've got to thinking that I'd better figure out my life, now that he's almost dead.
Another daughter echoed this factor
My husband and I decided at first to put off trips while my mother was with us. Then we read in the paper about this man who was looking after his mother, and was waiting until after she died for him to relax and enjoy life a bit. You know, travel and that sort of thing. Well, he ended up dying before she did! So, I thought to myself, yeah, I'm not so young myself, so I'd better start making sure I get what I want out of life.
These phrases "start living my own life" and "get what I want out of life" are noteworthy. Caregivers who were unable to confront this necessary appraisal of what they wanted out of liie had extreme difficulty even contemplating the decision to place their family member. As one woman experiencing this difficulty explained: I feel so trapped. I don't know what to do with him, and I can't see making a decision. You can't tell a grown man what's best for him, even though we are both sort of stuck. Yet, he can't make any decisions now like he always did. I really don't want to decide for him what is going to have to be done. We never talked about what he'd want done, and I don't know what I want for myself. It's awful.
It appeared that in order to effectively approach decisions about nursing home placement, caregivers needed a sense of "healthy selfishness" about their family member's impending death, their own Uves, and what meaning and purpose their lives had without the family member. This positive association between sense of existential self and caregivers' ability to make placement-related decisions is shown in Figure 1. As seen in Figure 2, sense of existential self was also related to a number of other factors in the theory. Sense of existential self was positively associated with "independence in relationship" and "perceived .presence of others," and a negatively associated with "fear of loneliness."
Guilt. This factor represented data reflecting the extent to which caregivers felt guilty over somehow "not doing enough" for the family member with dementia in their care. All participants were eager to discuss this subject, and reported confusing emotions about their guilt. As one wife stated:
I can't get rid of this terrible feeling of guilt... It's very difficult to shake, even though I know I really don't have that much to feel guilty about.
She goes on to add:
We just celebrated our fiftieth wedding anniversary, and it's really hard to get the whole 'death till you part* idea out of one's head.... You somehow think by putting the other person into a home you are breaking your vows. But then I think about it again, and realize I don't really have to feel guilty. It's sometimes very confusing.
Sons and daughters, usually in a less complex relationship with their parents than a wife-husband relationship, expressed less guilt than spouses did. As one son described:
Well, what can I say? What can you do, eh? I really don't have many other options, I feel like this is what I'll probably have to do. There's no guilt really, because I think I've certainly tried everything else I could possibly do.
Similarly, a daughter explained:
No, you know, I don't feel a bit of guilt. But then I've been taking care of mother for so very long. Ever since I've been in college we've switched the roles of mother and daughter. I've been a very, very good daughter for her, and she knows that. Why should I feel any guilt?
As Figures 1 and 2 demonstrate, guilt had a negative association with caregivers' ability to make placementrelated decisions, and a positive association with fear of loneliness.
This exploratory study validates the suggestion that the decision-making process around placement of a family member in a nursing home is rarely a simple, rational process (Dellasega St Mastrian, 1995). Rather, it appears to be a complex and emotional process, influenced by many interconnected factors in the caregivers' life. The tentative theory presented in this paper suggests one way to understand the various factors appearing to make the placement related decision-making process easier for some caregivers than for others.
One particularly interesting factor in this tentative theory, sense of existential self, suggests that caregivers' ability to make placement-related decisions is influenced by their ability to derive meaning in their lives and sense of self apart from the caregiving situation. While previous research has documented how helpful finding meaning (and other existential themes) within the caregiving situation can be for family members coping with caregiving, (Langner, 1995; Levine et al., 1984), this research suggests that the ability to successfully find a sense of meaning and self beyond the role of caregiving becomes vital when caregivers can no longer care for their loved one, and must begin to make decisions about nursing home placement. Other authors have described the inability to find new meanings outside of caregiving as "role captivity" (Aneshensel, Pearlin, & Schuler, 1993) or "role enguifment" (Skaff & Pearlin, 1992). These terms reflect the difficulty some caregivers can experience in maintaining roles other than that of caregiver.
This tentative theory suggests that caregivers experiencing a greater sense of independence in their relationship with the care-receiver could better respond to the existential issues facing them, in turn, they could confront the nursing home decision with less difficulty. This finding has a parallel in the widowhood and bereavement literature. It has been found that the degree to which women perceived themselves, primarily through their "wife identity" (i.e., relatively non-independent) prior to widowhood, influences their psychological well-being after widowhood. The more roles and identities a wife had outside of her marriage prior to her husband's death, the better she fared psychologically as a widow (Brock & O'Sulltvan, 1985; Hauser, 1983; Hoeffer, 1987). This similarity in findings is not surprising, given the comparison that has been made between widowhood and caring for a spouse with dementia (Levine et al., 1984).
This study also confirms other factors reported in the literature that appear to influence caregivers' decision-making process around the cessation of caregiving and initiating placement in a nursing home. These factors include guilt (Boykin & WinlandBrown, 1995; Dellasega & Mastrian, 1995; Johnson & Werner, 1982), support from relatives and friends (Boykin & Wmland-Brown, 1995; Collerick & George, 1986; Dellasega & Mastrian, 1995; Johnson & Werner, 1982; Fink & Picot, 1995; Lîeberman & Kramer, 1991; Wilson, 1989), and negative placement attitudes (Fink & Picot, 1995; Kelly, Swanson, Maas & Tripp-Reimer, 1999).
The primary limitation of the study was the comparatively small number of participants. A primary reason for the small sample size was the difficulty in identifying and accessing caregivers who were involved in the process of decisionmaking regarding nursing home placement of their loved one. That is, many potential participants initially identified were either adamantly refusing to consider the possibility of nursing home placement, or had already made the decision, and were on a waiting list for their loved one to be placed. Including a greater number of participants in the middle of the nursing home decision process, and reflecting a wider diversity of caregiving and demographic backgrounds (including ethnicity), would likely result in richer and more representative data.
Furthermore, it should be emphasized that this research is merely offering a formulation of a tentative theory suggesting how various factors might influence caregivers' ability to make decisions about nursing home placement of loved ones. Additional research is needed to confirm the theory's accuracy and applicability to clinical practice.
Implications for Nursing
This exploratory study offers a tentative theory to help nurses understand why the decision to place loved ones in a nursing home can be more difficult for some caregivers than others. Again, the placement question for caregivers of elderly individuals with dementia is actually not so much a question of whether or not their family member should be placed as it is a question of when their family member should be placed. This research also offers insights for nurses working with caregivers in the midst of this decision-making process.
While this study can only offer a tentative theory based on a small sample size, it can suggest some tangible ways that practicing nurses could change practice for the better. This study suggests that nurses could aid the nursing home decision-making process by addressing negative nursing home attitudes. For example, arranging a tour of a nursing home, particularly for caregivers who have never actually seen a nursing home before, can help to debunk myths that caregivers may have about all nursing homes being "warehouses for abuse" (Weinert, 1995).
This research suggests that other nursing interventions could include encouraging the expression of feelings such as guilt and fear of loneliness, building support networks, and exploring existential themes discussed in this article (e.g., finding sources of meaning outside the realm of caregiving). While nurses may not have adequate time or resources for such interventions, they can encourage the caregiver to access other resources, such as a local caregiver support group. Nurses can explain that such groups offer a safe place to discuss difficult decisions such as nursing home placement, and can help with feelings of guilt and loneliness (Hagen & Gallagher, 1997).
This research might also encourage nurses to "look deeper" when challenged with a caregiver client who is having a particularly difficult time making decisions about nursing home placement of an aged family member. What may initially appear to be an issue of "not being able to decide" about nursing home care may in fact be, after further exploration, an issue of the caregiver's fear of loneliness. Based on this information, the "nursing home problem" might actually be best addressed by interventions aimed at increasing the caregiver's socialization and social support. Thus, by being better informed about such possible issues underlying the nursing home decision, nurses are likely to have more fruitful and therapeutic discussions with caregivers about nursing home placement.
At the very minimum, this research offers nurses a deeper appreciation for how complex a caregiver's decision to place loved ones in a nursing home can be. Even when nurses believe a caregiver "needs" to place their family member in a nursing home, this research reminds us that presenting a convincing argument to caregivers will not always work.
Only by recognizing factors that make the decision easier or more difficult, and supporting caregivers in their decision-making process, can we help them make a graceful and timely transition to relinquish fulltime care.
Recommendations for Future Research
This tentative theory offers nurses a means by which to understand the various factors affecting caregivers' decision-making process about nursing home placement of their elderly family member suffering from dementia. Additional research to confirm or refute the factors presented in this theory would be beneficial - particularly with larger and more diverse samples of caregivers. More important would be research evaluating nursing interventions aimed at helping caregivers make more deliberate placement decisions that might avoid "crisis" placements. For example, using theories such as the one presented in this research, nurses could design and evaluate interventions that give caregivers the support they need as they work through the placement decision-making process. Such interventions might allow for a transition to nursing home care that is easier and less stressful for both caregivers and carereceivers.
- Aneshensel, C.S., Pearlin, L.I., & Schuler, R.H. (1993). Stress, role captivity, and the cessation of care-giving. Journal of Health and Social Behavior, 34(March), 54-70.
- Boykin, A-, & Winland-Brown, J. (1995). The dark side of caring: Challenges of caregiving. Journal of Gerontolagica! Nursing, 2!(S), 13-18.
- Brock, A.M., & O'Sullivan, P. (1985). Wife to widow: Role transition in the elderly. Journal of Psychosocial Nursing, 23(12), 6-12.
- Bunting, S.M. (1992) Eve's legacy: An analysis of family caregiving from a feminist perspective. In J.L. Thompson, D.G. Alien, fie L. Rodrigues-Fisher (Eds.), Critique, resistance, and action: Working papers in the polictics of nursing (pp. 53-68). New York: National League for Nursing Press. Pub, No. 14-2504.
- Burns, N., Sc Grove, S.K. (1993). The Practice of nursing research: Conduct, critique and utilization. Philadelphia: W.B. Saunders.
- Chenitz, C. (1983). Entry into a nursing home as status passage: A theory to guide nursing practice. Geriatric Nursing, 4(2), 92-97.
- Chenoweth, B., & Spencer, B. (1986). Dementia: The experience of family caregivers. The Gerontologist, 26, 267-272.
- Colerick, E.J., & George, L.K. (1986). Predictors of institutionalization among caregivers of patients with Alzheimer's disease. Journal of the American Geriatrics Society, 34, 493-498.
- Deimling, G.T., & Poulshock, S.W. (1985). The transition from family in-home care to institutional care. Research on Aging, 7(4), 563-576.
- Dellasega, C., & Mastrian, K. (1995). The process and consequences of institutionalizing an elder. Western Journal of Nursing Research, 17(2), 123-140.
- Field-Belenky, M. McVicker-Clinchy, B., RuIeGoldberger, N., Si Mattuck-Tarule, J. (1986). Women's ways of knowing: The development of self, voice and mind. New York: Basic Books.
- Fink, S.V., & Picot, S.F. (1995). Nursing home placement decisions and post-placement experiences of African-American and European- American caregivers. Journal of Gerontological Nursing, 21(12), 35-42.
- Glaser, E.G., Sc Strauss, A.L. (1967). The discovery of grounded theory: Strategies for qualitative research. New York: Aldine de Gruyter.
- Hagen, B., Gallagher, E-, & Simpson, S. (1997). Family caregiver education and support programs: Using humanistic approaches to evaluate program effects. Educational Gerontology, 23(2), 129-142.
- Hagen, B., & Gallagher, E. (1997). A qualitative study to determine the impact of caregiver education and support groups. Perspectives: Journal of the Gerontological Nursing Association, 21(\), 18-24.
- Harding, S. (1987). Feminism and Methodology. Bloomington: Indiana University Press.
- Hauser, MJ. (1983). Bereavement outcome for widows. Journal of Psychosocial Nursing and Mental Health Services, 21(9), 23-31.
- Hoeffer, B. (1987). Predictors of Ufe outlook of older single women. Research in Nursing andHealth, 10(2)t 111-117.
- Johnson, M. A., & Werner, C. (1982). "We had no choice:" A study in familial guilt feelings surrounding nursing home care. The Journal of Gerontological Nursing, S(Il), 641-645,654.
- Kelly, L.S., Swanson, E-, Maas, M.L., & TrippReimer, T. (1999). Family visitation on special care units. Journal of Gerontological Nursing, 25(2), 14-21.
- Kuhlman, G., Wilson, H., Hutchinson, S., & Wallhagen, M. (1991). Alzheimer's disease and family caregiving: Critical synthesis of the literature and research agenda. Nursing Research, 40(6), 33 1-337.
- Langner, S.R. (1995). Finding meaning in caring for elderly relatives: Loss and personal growth. Holistic Nursing Practice, 9(3), 75-84.
- Levine, N.B., Gendron, C.E., Dastoor, D.P., Poitras, L.R., Sirota, S.E., Barza, S.L., Oc Davìs, J.C. (1984). Existential issues in the management of the demented elderly patient. American Journal of Psychotherapy, 38(2), 215-223.
- Liang,J., &Tu, EJ. (1986). Estimating lifetime risk of nursing home residency: A further note. The Gerontologist, 26, 560-563.
- Lieberman, M.A., fie Kramer, J.H. (1991). Factors affecting decisions to institutionalize demented elderly. 7"Ae Gerontologist, JÍ(3),371-374.
- Montgomery, RJ., & Kosloski, K., (1994). A longitudinal analysis of nursing home placement for dependent elders cared for by spouses vs. adult children. Journal of Gerontology: Social Sciences, 49(2), S62-S74.
- Morycz, R.K. (1985). Caregiving strain and the desire to institutionalize family members with Alzheimer's disease. Research on Aging, 7, 329-361.
- Murtaugh, C.M., Kemper, P., Spillman, B.C., & Lepidus-Carlson, B. (1997). The amount, distribution, and timing of lifetime nursing home use. Medical Care, 3i(3), 204-218.
- Pruchno, R.A., Michaels, E-, & Potashnik, S.L. (1990). Predictors of institutionalization among Alzheimer disease victims with caregiving spouses. Journal of Gerontology: Social Sciences, 45(6), S259-266.
- Skaff, M.M., & Pearlin, L.I. (1992). Caregiving: Role engulfment and the loss of self. The Gerontologist, 32(5), 656-664.
- Smallegan, M. (1985). There was nothing else to do: Needs for care before nursing home admission. The Gerontologist, 25, 365-369.
- Weinen, C. (1995). Commentary. Western Journal of Nursing Research, 17(2), 137-139.
- Wilson, H.S, (1989). Family caregiving for a relative with Alzheimer's dementia: Coping with negative choices. Nursing Research, 38(2Q), 94-98.
- Zarit, S.H., & Whitlatch, CJ. (1992). Institutional placement: Phases of the transition. The Gerontologist, 32(5), 665-672.
SELF-RANKINGS OF PLACEMENT DECISION-MAKING FACTORS BY CAREGIVER