This research project explored the experiences of adult daughters surrounding the decision for and admission of a parent to a nursing home. An assumption was made that the daughters' perceptions of this process would provide nurses with a basis for understanding family members' reactions to the relocation. In turn, the nurse could use that information to plan individualized care for the older parent, thereby helping to maintain continuity of the family system.
Studies concerning nursing home placement have documented the importance of continuation of family contact with an older person following admission to a nursing home. These studies also point out some of the problems that families identify with care after admission.15 Despite the attractive arguments suggested by various researchers for changing the image of the nursing home and instituting methods to ease the relocation trauma associated with admission to a nursing home, this change of residence continues to be problematic for many families as well as the patient. As many as 52% of adult child caregivers and 89% of spouse caregivers in one study believed that the elderly parent's or spouse's institutionalization was the most difficult problem they had ever faced.6
The family may finally reach a point when they say there are no other choices.7 Yet, other research has demonstrated that alternatives for care were not known or were not attempted.5 The first perspective suggests that a family may be faced with a moral dilemma in making the choice, and must reconcile their past history and values with the decision for placement. The latter view may indicate a more basic lack of understanding about options available. Or, beliefs about the utility of those options could interfere with the selection of any choice of care other than nursing home care.
Daughters were selected as the focus of this study because caregiving of the parent is usually assigned or assumed to be the responsibility of daughters.8" The parent's admission was considered to present an ethical dilemma for daughters within the context of the family subsystem of daughter and parent. Phenomena other than ethical issues in decision making for relocation could also influence perspectives on this event. However, few studies have associated nursing home admission with ethical dilemmas.6 Conceptualizing the study in this way is unique but appropriate for understanding family involvement in long-term care.
SIGNIFICANCE FOR NURSING
Family decisions to admit parents to nursing homes is a topic of significance for nursing practice as well as education and research. Although professional nurses are aware of the influence of the family on the well-being of a patient, more concern is usually focused on the patient rather than the family. Nurses in long-term care often do not know what the family has experienced in the relocation process. Without this information, it is not possible to implement or even plan individualized care for the patient. In the absence of such information, nurses may function on the basis of a personal value system to determine what the family should do or be in relation to the patient. Assumptions made about a given family are potentially incomplete. A discrepancy appears to exist between nursing's desire for comprehensive individualized care that promotes integrity of patient and continuity with family, and the actual situation.
Education of both undergraduate and graduate nurses continues to place relatively greater emphasis on acute care rather than chronic or long-term care. This focus persists despite the nursing profession's history of espousing health promotion, teaching, and service to individuals in a family context across the life span. Few professional nurses work with either patients or families in long-term care facilities. However, professional nurses do contact older people and their families prior to the decision for placement in a nursing home. Given this current employment framework, the nurse is in a critical position to provide guidance to families facing this decision for care of the older relative.
As with other disciplines, little research in nursing has been concerned with family involvement in nursing homes. The focus has been on specific nursing care problems, techniques for improving that care, and problems encountered by nurses when patients have difficulty with the relocation process.1215 More recent interest, evident in the study by Bowers,16 examined the involvement of relatives in the care of older residents and their perceptions of care provided by nursing home staff. Relatives in Bowers' study held staff responsible for most care with task orientation, but assigned specific responsibilities to themselves, especially to monitor quality of care. The primary purpose of family care was to preserve the affective characteristics of the older person.
The concepts that formed the basis for this study were derived from systems theory and ethics as related to decision making. First, the family as a system was considered as the context for relocation of an older relative to a nursing home. The second factor was founded on a belief that the decision for admission was an ethical dilemma for daughters in that system. Within each factor, subconcepts were considered to be critical to explain the limits and boundaries of the major components. Thus, family development, functions and roles, and boundaries were suggested as important elements of the family system applicable to this situation, with the subsystem of daughter and parent providing the focus for study. Ethical theories, filial responsibility, feelings of burden, and loyalty were thought appropriate to explicate dilemmas.
These components of systems theory and ethics suggest that the ability of a family member (the daughter) to manage decisions associated with the care of an older relative is influenced, in part, by values held within the family. Ethical theories help to identify those values and the consequent behavior following admission to a nursing home. Family history, as well as the functions and roles of family members, will affect what happens when a family is faced with having to make the decision about care. However, these theories help only to describe the context for family and ethical issues. The purpose of this qualitative study was to contribute to the development of a conceptual or theoretical framework, not to test a specific theory. Therefore, systems theory and a focus on ethical decision making were used to guide the selection of the study population and identify specific aspects of the experience of nursing home admission more systematically.
To capture the depth of feelings and personal nature of the decision-making process, a qualitative multiple case study design was used. The cases were represented by 16 daughters who had admitted a parent to a skilled nursing care facility, with anticipation of longterm or permanent residence. Daughters were interviewed three times over a 60- to 70-day period after admission. The 2-month time frame allowed the opportunity for retrospective consideration of the decision. Much of the interview time was devoted to an unstructured format that allowed for in-depth probes, examples, and the open expression of feelings.
Prior to beginning the research, a pilot study with two daughters, who were not part of the study, was conducted. One of these women had admitted her mother to a nursing home; the other was in the process of making the decision. The primary purpose of the pilot was to test the investigator's ability to obtain information using either open-ended questions or a genogram for data collection. Although the genogram stimulated discussion, it created an interference for this investigator in tracking the daughter's comments.
Eight specific questions were identified from these two daughters that appeared to help focus on components of the decision and admission processes. These questions, used in the study when daughters did not spontaneously offer the information, helped to obtain common content for analysis; eg, how did the decision for admission come about? How do you think the decision affected you or your family? And, how does this experience compare with other decisions and experiences?
SETTING AND SAMPLE
Administrators of seven skilled proprietary nursing homes participated by identifying those daughters who had admitted a parent to that facility during the preceding seven days. The size of the nursing homes varied from fewer than 100 to more than 125 residents.
Five (25%) of the daughters contacted elected not to participate. No attempt was made to coerce the daughters into participation, and the reasons given were based primarily on "being busy" with work, family, or moving. Over a period of 6 months, 16 daughters were admitted to the study. Three interviews were scheduled with each respondent covering the first 2 months after admission. Despite the qualification of long-term or permanent stay, seven of the parents were not in the nursing home at the final interview time. Two were discharged before Time 2, two died before Time 2, and three died before Time 3.
Daughters who had previous experience with the use of a nursing home for a parent or other relative were not excluded. Those daughters did not appear to differ from respondents who experienced the decision for the first time. As one daughter explained, "This admission just brought back all the memories of the first time. This one was just as bad." Thus, the experiences ranged from no past experience with nursing homes to situations in which the nursing home constituted the parent's living arrangement for 8 years. Sample selection was not based on diagnosis of the parent or age of either parent or daughter. Variation in all these factors was considered one method to triangulate data and represent the broad range of experiences possible with this decision.
Characteristics of the parents included an age range of 63 to 98, 25% (n = 4) had lived with the daughter prior to admission, 18% (n = 3) were divorced, 12% (n = 2) were still married, and the remainder were widowed. The daughters were noted to range in age from 33 to 67, 50% (n = 8) were working outside of the home, 72% (n = 12) were married, and the remaining 4 were equally distributed between divorce and widow status.
DATA COLLECTION PROCEDURES
Daughters who agreed to participate in the study were interviewed by the investigator in a location designated by that daughter. Each respondent was interviewed at least twice, for a total of 45 taped interviews: 7 to 10 days after admission; 30 to 35 days after admission; and 60 to 70 days after admission. Most interviews (62%) were conducted in the daughter's home. Others were held in the daughter's place of business, the investigator's office, or a restaurant. Five (1 1%) were conducted by telephone. The first interview always occurred face to face. Daughters whose parent had died or was discharged during the 2-month period were interviewed again to determine if there were differences in their perceptions regarding the decision. For the seven daughters who came under this grouping, three were interviewed twice and four were involved in all three interviews.
As data collection and preliminary coding progressed over the three interview times, comments from daughters were shared with other respondents. In this manner, a constant comparative system was established to facilitate data collection and management. The final report was sent to all respondents for review and comments as a means to achieve credibility of the data.
The results of all interviews were categorized into four large groupings related to the decision: lack of control over the decision, rationale suggested for the decision, dilemmas encountered, and revisiting the decision. The latter exercise provided a sense of the meaning of this experience over time.
Lack of Control
During the first interview, daughters described the decision as being out of their hands. The definition of lack of control varied from one in which someone else made the decision, to perceived impossibility of caring for the parent in any other way. Examples of the first grouping included: "They said this is what I would have to do," and "A friend said I owed it to myself. That determined the decision."
Within this grouping, too, were those daughters who reported that it was the parent who ultimately made the decision due to past lifestyle or expressed desires. Daughters said: "If he had taken care of himself in the past, he would not need to be in a nursing home," and, "She really made the decision herself.
Another aspect of lack of control was found in a sequence of events as one decision started a process that was difficult to stop. This was exemplified by a daughter whose parent was admitted to a hospital for treatment without the daughter's involvement in that decision. The parent was unable to return to the previous living arrangement, so a nursing home or the daughter's home were the only options. Hospitalization was perceived as the stimulus for nursing home admission and the factor that took the decision for placement out of her control.
Inability to care for the parent in any other way was recounted through a variety of measures that had been attempted in the past: "We had exhausted all other avenues. We had tried our private homes and retirement homes. The last nursing home was our combined decision," and "I thought an old-fashioned companion would be a good way to go. I had found a small rest home where people were more optimistic. She was too ill for any of these."
Only one daughter reported using home care services. When care was provided by family, it was the daughter alone who usually supplied that care. Family assistance was generally used and involved the daughter's spouse or children, not her siblings.
Rationale for the Decision
Daughters described observations that defined the need for care in a nursing home. These reasons explained for daughters the appropriateness of the decision and provided support for the decision. They said: "I was too concerned about her safety to think of home care"; "I could see that mother was not holding up. I knew it would be the best thing for both of them (to admit father)"; and "I was afraid of abuse by a caretaker in the home because of her behavior. "
Even when the daughters reported that the decision for nursing home placement was made by others, they were responsible for the second aspect of that decision: carrying out the first aspect. They decided, either alone or in consultation with other family members, on the specific nursing home. The basis for the selection was generally twofold: proximity to self or convenience in visiting for family and friends, and appearance and cleanliness of both the physical facility and other residents. Reputation of the nursing home and recommendations from others, such as physician or friends, also influenced the choice of facility.
Despite the logical reasons for the admission, daughters expressed ambivalence about the decision; no daughters expressed pleasure. Most daughters found the decision to be "the hardest thing I have ever done," "difficult," "sad," "stressful to place her," and "traumatic to place her and then to move her to another nursing home." Most of the daughters stated they had never thought about the need for a nursing home and had never talked about this in the family. Only two daughters said they had promised the parent to "never put you in a nursing home."
Finally, the daughters expressed ethical dilemmas that they encountered with this experience. They found it difficult to weigh responsibilities related to the parent and those for themselves and their family. They spoke of having to make difficult choices between the needs of their parent and the rest of their family related to health status of themselves or other family members, personal plans for retirement, and nature of family development, such as activities of teenage or young adult children. Comments included, "You have to look at both sides of it; what will the effect be on the family if (parent) was cared for at home"; "It is hard to distinguish what is the right thing to do (for the parent)"; and, "I have mixed emotions about what was right. I think it might be good for her to be with her peer group, but she was part of this famUy."
Although guilt was a term used by three of the daughters, the more common theme expressed was a wish to avoid hurting anyone: parent, other family members, or themselves. These daughters appeared to be caught in the bind of deciding what was best for all concerned and having to come to terms with the fact that someone was or might be "hurt" in the process.
A second dilemma was encountered in relation to issues, both before and after admission, of autonomy and selfdetermination versus safety, protection, and maintaining the parent's usual lifestyle. A daughter had second thoughts that "Maybe I should have left her where she was even though she was ill. She may have died, but she was happy there, and was able to do things she wanted to do." Related to autonomy was concern expressed by three daughters that the parent was using life savings to pay the bills and was therefore unable to make a decision about how to spend personal finances. Other respondents did not define this concern, either because other issues predominated or the expenses were covered by Medicaid or other insurance. The length of time involved in the study (2 months) may not have been sufficient for the issue of finances to predominate for some of these daughters.
At the point of admission, most daughters had second thoughts, questioning the validity of the choice and if this particular nursing home was the right selection. They said: "There is always a doubt. I think maybe it was 90% right"; and, "I don't know if I will keep her at this nursing home. Maybe I should bring her home."
By the second interview, 30 days after admission, four of the daughters were convinced that this was the "right" decision. They voiced a belief that "I could not care for her," and "It is better for her to be there, even though I still get tearful." However, eight daughters had more serious doubts that the decision was right. One daughter had brought her mother home prior to the second interview. Another found that her parent's behavior, identified as confused and wandering in the nursing home, removed choice from the family. This daughter decided safety was an over-riding factor to support the decision. Two were concerned that the parent was becoming institutionalized and would remain in the nursing home regardless of what the family might want.
Other changes also appeared. Two parents had died and two had been admitted to a hospital. Of these latter, one was readmitted to the same nursing home and the other was admitted to a different one. Three daughters had moved the parent to another nursing home, and others contemplated a move. The reasons given for these relocations were dissatisfactions with the type of care provided or the parent's unhappiness as perceived by the daughter.
The eight daughters who expressed specific doubts that the nursing home was the right choice commented that "I should be taking care of her at home"; "I keep questioning if she really needs this"; and "It is too early to tell, but I don't think of this as a permanent placement." These doubts were supported by comments indicating uncertainty about the type or level of care provided. They wondered if the parent might not improve more if kept at home.
Additional comments about dilemmas involved either family or personal goals. Although respondents provided reasons for the actual admission, saying "I would be too tied down here, we need to do the kinds of things we planned to do"; and "It is not fair to the family to inflict that kind of care on them," they also stated they "should" be the ones providing care for the parent at home. One daughter said "You owe it to the parent out of obligation over a lifetime."
At the final interview, 60 to 70 days after admission, another parent had been taken home following rehospitalization for surgery. Also, three more parents had died. Thus, for the entire sample of daughters, 9 parents remained in a nursing home 70 days after the admission, albeit not the same facility originally selected.
The daughters' perceptions of the decision by Time 3 again varied. Some respondents were relieved because "I did not have to make the decision," or because the family had exhausted all other options. Yet, seven others still were not sure that the decision was "right." One daughter said that "On hindsight I should have quit my job and taken care of Mom at home." Responses from six daughters at the final interview indicated they had resolved some of their sense of a dilemma. For example, they said "There is no right or wrong, only the best at the time," and "It is neglect when you keep someone home who needs more care."
Daughters' perceptions about the decision to use a nursing home for the care of their parents focused on the initial decision being made by others. Thus, recommendations from medical personnel or friends were influential in forming their judgments about the level and type of care needed. The second part of the decision, to actually admit the parent, created the greatest problem by raising doubts that the right decision had been made. By the end of the study, six of the daughters said that they had been able to reconcile their feelings about the initial placement. However, seven were still distressed about the need for placement. Death or discharge to home did not in itself seem to alter the daughters' perceptions about the decision.
The entire decision process, including the time after admission, was characterized by moral conflicts for the daughter. These issues related to lack of autonomy for the parent, weighing rights and privileges of parent versus self and family, and being true to the parent. Daughters expressed uncertainty that a "right" decision had been made or that they were a "good" daughter because of this placement.
These descriptions of the experience of deciding for nursing home admission indicate the need for nursing intervention prior to actual placement. The fact that few daughters had discussed the possibility of a nursing home for care with family members leaves no time for anticipatory socialization. Rather than focusing only on alternatives to a nursing home, nurses can be of help in the decision-making process, fostering discussion about the appropriateness of nursing home placement. The fact that only two daughters had promised to never use a nursing home further indicates a need for preplanning and discussion of the nature of nursing homes, including family involvement.
The frequency of moves to other nursing homes also should alert nurses to the need for on-going discussion with daughters about feelings engendered by the relocation. Despite the fact that quality of care was given as the reason for the move, the underlying feelings seemed to relate more to the daughter's perception of what was "right." When the decision was not perceived as "right," daughters sought to find the ideal or perfect home. The effect of repeated relocations on both patient and family, as well as on nursing home staff, calls attention to the need to pursue family and staff therapeutic interactions as pre-admission activities. Orientation to a nursing home begins prior to admission as a method of caring for the caregiver.
Other findings reported from this study suggest that daughters perceived themselves to be excluded from active participation in decisions related to care provided after admission. That finding combined with those related to the decision per se suggests that greater involvement of nurses to facilitate family oriented care is needed. Discharge planning and continuity of care imply that consumers are involved in decisions, are aware of choices, and have accurate information about those choices. The uncertainty represented by these 16 women does not support that definition. Waiting until a crisis situation develops or avoiding consideration of a nursing home as a valid source of care may place an added burden on the family.
Although it is not possible to generalize these findings to other populations, they do serve to raise questions about how professional nursing assists families with decisions for relocation. Other studies that attend to additional family members, that compare perspectives of different members of the same family, or that compare differences between families could help to clarify areas of need for nursing intervention. Studies that compare family and staff perceptions could also benefit from the understanding of interactions that occur prior to and after the relocation. Finally, studies that address family development versus individual development issues might help to explain some of the ethical dilemmas these respondents reported.
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