Journal of Gerontological Nursing

"We had no choice": A Study in Familial Guilt Feelings Surrounding Nursing Home Care

Mary Ann Johnson, RN, MS; Carol Werner, MA, PhD

Abstract

Transfer of an older adult to a nursing home frequently engenders feelings of anxiety and guilt among the individual's family members.1 Families who experience these feelings generally visit the resident less after placement, and are less satisfied with their visits.2 Little is known about the events that preceded the decision to transfer the resident3 and less is known about the relationships between these events and the family's subsequent guilt feelings. The purpose of this study was to examine the relationships among a number of factors in the decisionmaking process and the amount of guilt experienced within one year of the decision.

Research on the attributions people make about their behavior suggests several factors that might influence the amount of guilt. In this analysis of perceived choice, Mills4 suggested that perceiving that one has a number of equally viable options increases one's perception that one has choice when making a decision; without options, there is little perceived choice. Harvey and his colleagues5"7 have found substantial support for these hypotheses.

In the case of families deciding to transfer a relative to a nursing home, perceptions of reduced choice could come from two sources - the family's inability to cope with the relative's problems and the family's inability to locate viable alternative living arrangements. Thus, family members who perceived that external constraints had compelled them to move their relative into a nursing home should perceive that they had little choice and should experience less guilt about the decision. For example, external constraints such as the advice of a physician, several physical or psychological ailments, or severe disabilities could be sufficiently compelling that the family members · would feel little choice. Under the circumstances, they could place responsibility for the decision on the situation, not themselves. Similarly, the perception that no alternative living arrangements were available should reduce perceived choice and responsibility. Thus, families who had explored other options to nursing home placement (for example, visiting nurse, adult day care, etc.) and found them to be unsatisfactory, would feel less responsibility and guilt.

It is important to remember that this is a correlational study, and causality is not implied. Experimental work currently is being planned to see whether counseling strategies based on the present results are useful for assisting families in planning and adjusting to a nursing home transfer, and whether this adjustment is associated with more and better visits by the family after the transfer.

It is also important to remember that this is a retrospective study. We cannot be certain that the respondents' memories are accurate. On the other hand, attribution researchers argue that it is not important that subjects' perceptions are accurate; what is important is that the responses do indicate some relationship between stated guilt and memories of circumstances surrounding placement. It may be that we have tapped into decision making and health variables that do facilitate adjustment. It may also be that adjustment includes some degree of cognitive justification for the move. It would be interesting to study the process of adjustment to the transfer across time to assess the extent of changes in attributions and guilt.

One of the problems with the study is the possibility that we received information only from individuals who were comfortable with the transfer. Only one third of the eligible participants actually provided responses, and although they did not know our interest in their feelings about the transfer, it is possible that we had a biased sample. However, actuarial data from the same nursing home suggests that our group of respondents is not too different from the relatives of the nonrespondents. The proportion…

Transfer of an older adult to a nursing home frequently engenders feelings of anxiety and guilt among the individual's family members.1 Families who experience these feelings generally visit the resident less after placement, and are less satisfied with their visits.2 Little is known about the events that preceded the decision to transfer the resident3 and less is known about the relationships between these events and the family's subsequent guilt feelings. The purpose of this study was to examine the relationships among a number of factors in the decisionmaking process and the amount of guilt experienced within one year of the decision.

Research on the attributions people make about their behavior suggests several factors that might influence the amount of guilt. In this analysis of perceived choice, Mills4 suggested that perceiving that one has a number of equally viable options increases one's perception that one has choice when making a decision; without options, there is little perceived choice. Harvey and his colleagues5"7 have found substantial support for these hypotheses.

In the case of families deciding to transfer a relative to a nursing home, perceptions of reduced choice could come from two sources - the family's inability to cope with the relative's problems and the family's inability to locate viable alternative living arrangements. Thus, family members who perceived that external constraints had compelled them to move their relative into a nursing home should perceive that they had little choice and should experience less guilt about the decision. For example, external constraints such as the advice of a physician, several physical or psychological ailments, or severe disabilities could be sufficiently compelling that the family members · would feel little choice. Under the circumstances, they could place responsibility for the decision on the situation, not themselves. Similarly, the perception that no alternative living arrangements were available should reduce perceived choice and responsibility. Thus, families who had explored other options to nursing home placement (for example, visiting nurse, adult day care, etc.) and found them to be unsatisfactory, would feel less responsibility and guilt.

Diffusion of responsibility also might operate to reduce individual guilt.8 For example, Mynatt and Sherman9 found that group members were likely to attribute a decision to the group and not accept personal responsibility when the decision had negative consequences. In nursing home placements, therefore, the more people who are involved in the decision to transfer the elder relative, the less prevalent the guilt feelings about the decision. Furthermore, if the patient him/herself agrees that it is the correct decision, the family would be relieved of responsibility and should experience less guilt.

In addition to examining relatives' perceptions of the pretransfer events, we also examined another aspect of the decision to move the patient that might affect subsequent guilt reactions. The consequences of an act often have greater influence on the attributions than does the nature of the act itself.10-12 Hence, we hypothesized that if the relative died while in the nursing home, individuals would experience more responsibility and more guilt than if the patient did not die. An alternative hypothesis is that the patient's death would provide even more external justification for the transfer, but only if the patient died soon after placement. Relatives might conclude that the patient had been severely ill and in need of greater skilled care than could be provided at home. If this was the case, a precipitous death would be associated with reduced guilt. However, if the patient died after several months in the home, the family might conclude that something about the home had contributed to or caused the death; had the patient not been moved, she or he might have lived.

METHOD

A questionnaire was used to elicit information from a family member pertinent to preparations made for admission of an older relative to a nursing home. Questions related to demographic characteristics as well as information about the events that had preceded the move into the nursing home.

Subjects

The sample of respondents was drawn from a pool of 153 families who had admitted an elderly relative (65 years of age or more) to a single skilled nursing care facility between April 1, 1979 and March 31, 1980. Letters were sent to each of the 153 relatives listed as the responsible party on the patient's admission sheet; the letters advised them of the project and were used to assess their initial interest in participation.

The responsible party is the individual who actually signs the forms admitting the patient to the nursing home. Legally, she or he is the person responsible for payment of bills. In practice, she or he is seen as the individual with the closest affectional ties to the patient. He or she is consulted about changes in the patient's regimen or condition, and is consulted about any problems. Although she or he signs the formal admission papers, she or he is not necessarily responsible for the decision. Note that in selecting a single individual, we are focusing on that person's perceptions rather than on the family's reaction as a group.

Respondents were told that the researchers were interested in understanding the admission process. No mention was made of guilt or regret over the move, hence it is unlikely that refusals were related to defensiveness over that issue. Sixtynine individuals expressed an interest in participating; 55 actually completed and returned usable questionnaires. Thus, of the 153 relatives contacted, 45% volunteered and 36% actually participated. The great majority of respondents had placed their relatives into the home at least three months prior to completing the questionnaire.

Questionnaire and Data Analysis

The questionnaire was comprised of the relevant portions of York and Calsyn's instrument.2 It contained questions about the respondent's age, sex, marital status, and relationship to the patient. The bulk of the questionnaire pertained to preadmission experiences and decision-making processes; only portions pertinent to the present hypotheses will be described in this article. The questionnaire was pilot tested in the same nursing home on a sample of individuals not eligible to participate in the main study because they had admitted a relative prior to the beginning date. This pilot test indicated that the questions were easy to read and answer.

Physical and Psychological Symptoms

Respondents were given a list of 24 symptoms and asked to indicate those that the relative had experienced in the six months prior to admission and that had constributed to the decision to move him/ her to the nursing home. The list included both physical (for example, loss of ability io walk, loss of control of urine or bowels, etc.), and psychological problems (for example, loss of memory, disorientation, misidentification of people, etc.) (see Table 1).

Alternatives to Nursing Home Care

Respondents were given a list of ten alternatives to nursing home care that were available locally (for example, home health aide, adult day care service, visiting nurses, etc.) and asked to indicate which had been tried prior to admission. We did not assess whether alternatives merely had been considered, hence this is a rather stringent test of the alternatives hypothesis.

Number of Decision Makers

Subjects were asked to indicate all people who actually had made the decision to move the patient into the home. The options included: a) patient, b) yourself (respondent), c) the family, d) the patient's physician, e) hospital social worker, f) patient's clergyman, and g) other. No one indicated options f) and g), and they were omitted from analyses. Note that respondents did not indicate which or how many family members had been involved. Thus, family involvement was measured less sensitively than it could have been, and tests involving family involvement should be considered conservative.

Table

TABLE 1SYMPTOMS OF PATIENTS PRIOR TO ADMISSION

TABLE 1

SYMPTOMS OF PATIENTS PRIOR TO ADMISSION

Death

In order to decrease respondents' sensitivity about death, this item was not included on the questionnaire, but was derived from nursing home records. The use of precoded forms permitted us to associate a limited amount of nursing home data with each questionnaire.*

Guilt Feelings

Four items were used to assess the respondent's experience of guilt about the decision. Respondents used five-point scales ("strongly agree" to "strongly disagree," with "no opinion" as the neutral point) to indicate their endorsement of items tapping feelings of guilt, regret, shame, and dissatisfaction with the decision (for example, I feel/felt guilty when I think/ /thought of my relative in a nursing home). The satisfaction item was reversed to counteract problems of response set.

Data Analysis

The four guilt items were highly intercorrelated (rs (53) ranged from .19 to .85, with all but one ? < .05), and hence were summed to provide a single index of guilt experienced about the decision. This measure was correlated with the individual items in each subscale (coded 0 for absent, 1 for present), as well as the total number of items checked in each subscale. Thus, we could determine whether particular problems, alternatives, or decision makers were related to guilt, as well as whether the sheer number of each kind of external constraint was related to guilt.

The diffusion of responsibility hypothesis was tested by correlating respondents' reported guilt with a score indicating whether she/he was the sole decision maker (0), one decision maker among others ( 1 ), or not involved in the decision (2). Thus, there should be an inverse relationship between guilt and the respondent's degree of involvement score.

Procedure

The questionnaires were mailed to all volunteers with a cover letter explaining the nature of the study and the rights of the respondents, a consent to participate form, and a stamped, addressed return envelope. Two weeks after this initial request, all volunteers were sent a note of appreciation that contained a reminder to those who had not responded yet. All of these strategies were intended to induce a high response rate.14

RESULTS

Demographic data reported in the questionnaire indicated that the respondents in this study were primarily women (75%), daughters of the patient (53%), married (73%), with a mean age of 58 years. Approximately half (42%) had been involved in the decision for placement. This was the first experience with admission of a relative to a nursing home for 70% of the respondents.

Guilt scores could range from 4 to 20, and did range from 4 to 17. The average total guilt score was 9.44, well below the neutral point of 12.00, ¿(54)=6.24, /K.001; thus, in general, respondents were comfortable with their decision. Still, the presence of external constraints affected the level of guilt.

Physical and Psychological Problems

As can be seen in Table 1, three of the particular symptoms were related significantly to the total guilt score. If the patient had been misidentifying people or had a fractured leg or hip, guilt scores were lower; however, if the respondent indicated the presence of a problem that we had not included in the list, guilt scores were higher! Nineteen subjects had used the "other" category; these problems included patient's drug abuse, his/ her inability to sleep at night, lack of people to care for the patient, and a variety of other problems. We could not discern a pattern to these responses nor why they might be associated with higher guilt scores.

Respondents reported an average of 4.6 problems; most (84%) indicated that their relative had more than one problem prior to admission. As can be seen in Table 1 , most of the times were correlated highly with the total number of problems;** however, the total number of problems was not correlated with the guilt score. In summary, particular problems were associated with lower or higher guilt, but their sheer number was not. Note that respondents were not asked to indicate the severity of the problems; it may be that a single severe problem provides more external justification than a variety of less severe problems.

Number of Alternatives

The average number of alternatives that had been tried was 1.1. Only 24 (44%) of the families had tried any alternatives and few (28%) had tried more than one. This lack of exposure to other options may reflect a lack of awareness of these possibilities, or it may simply reflect the fact that most (80%) of the patients had been moved from a hospital, and the families had little opportunity to seek out other alternatives. For whatever reason, there had been little exposure to alternative arrangements. Guilt was not correlated with the use of any of the individual options (rs (53) ranged from .02 to .16, ps <.10) nor with the total number of alternatives (r (53) =-.05, p> .10).

Other Decision Makers

The diffusion or responsibility hypothesis was not supported by the correlation between respondent's guilt and his/her degree of involvement (r (53) = .07, p > .10). A second set of analyses tested whether the sheer number involved (irrespective of whether the respondent was involved) and particular person's involvement were associated with the respondent's guilt.

Table 2 provides data on the people who had made the decision for placement. As can be seen, few of the individual items were intercorrelated, even when the low frequency of occurrence is considered (most of the correlation coefficients were lower than the maximum possible). 15 However, each was correlated highly with the total number of people, and the total was correlated with guilt. As hypothesized, having more people involved in the decision did reduce guilt. In addition, two individual items were correlated with guilt - having the patient or other family members involved in the decision seemed to make the transfer easier to accept. Note that although the patient's physician was involved in 76% of the decisions, his or her opinion alone was not related to guilt; if anything, the physician's advice tended to be associated with higher guilt scores.

In order to assess the unique impact of each of the decision makers, a regression analysis was conducted in which the five individuals who might have been involved in the decision were regressed onto guilt in stepwise fashion, with the stipulation that only significant variables (p < .05, onetailed) be permitted to enter. Each possible decision maker was assigned a score of zero (not involved) or one (involved). The first variable to enter was the patient, the next was family; none of the other decision makers entered. These results confirm the zero order correlations, and indicate that a recommendation by an expert is not sufficient to reduce guilt, but the decision by (or possibly agreement with) significant others is.

Death and Guilt

Approximately one half (45%) of the patients died while in the nursing home; however, across all respondents, death was not related to either increased or decreased guilt, r(53) = 07, p > .10. The hypothesis that a short stay prior to death would reduce guilt but a long stay would increase it was tested by correlating reported guilt with length of stay for all respondents whose relatives had died while in the home.f This correlation also was not substantial, r(23) = .03, p~> . 10. The relationship between death and guilt remains to be understood.

DISCUSSION

Attribution theory has provided a useful framework for examining reactions to nursing home transfers. We found that there were some external constraints that were related to reduced guilt. In particular, the symptoms of immobility or failure to recognize people were associated with lower guilt. Respondents who indicated the patient or the family had been involved also expressed less guilt. The latter finding is consistent with data collected by Beaver.16 It also fits into Hirschfiel d & Dennis' finding that a major intergenerational conflict between elderly people and their children is guilt about a variety of issues, not only nursing home placement.17

Table

TABLE 2PERSONS MAKING THE DECISION FOR ADMISSION: CORRELATIONS, POSSIBLE CORRELATIONS, AND RESULTS OF REGRESSION ANALYSIS

TABLE 2

PERSONS MAKING THE DECISION FOR ADMISSION: CORRELATIONS, POSSIBLE CORRELATIONS, AND RESULTS OF REGRESSION ANALYSIS

It is important to remember that this is a correlational study, and causality is not implied. Experimental work currently is being planned to see whether counseling strategies based on the present results are useful for assisting families in planning and adjusting to a nursing home transfer, and whether this adjustment is associated with more and better visits by the family after the transfer.

It is also important to remember that this is a retrospective study. We cannot be certain that the respondents' memories are accurate. On the other hand, attribution researchers argue that it is not important that subjects' perceptions are accurate; what is important is that the responses do indicate some relationship between stated guilt and memories of circumstances surrounding placement. It may be that we have tapped into decision making and health variables that do facilitate adjustment. It may also be that adjustment includes some degree of cognitive justification for the move. It would be interesting to study the process of adjustment to the transfer across time to assess the extent of changes in attributions and guilt.

One of the problems with the study is the possibility that we received information only from individuals who were comfortable with the transfer. Only one third of the eligible participants actually provided responses, and although they did not know our interest in their feelings about the transfer, it is possible that we had a biased sample. However, actuarial data from the same nursing home suggests that our group of respondents is not too different from the relatives of the nonrespondents. The proportion of nonrespondents' relatives who died within the first year was the same as in our sample (44/98, or 45%), as were the proportions who had come from hospitals (81/98, or 82%), and whose daughters were the responsible parties (44/98, or 45%). Each of these proportions is comparable to our sample statistics, suggesting that, in many ways, our sample is representative of the nursing home group as a whole.

There is one feature of our sample that is worth noting. The respondents were predominantly members of the Latter Day Saints Church. This church emphasizes the importance of strong family ties. Large families also are encouraged. It was not uncommon for individuals of our patients' generation to have more than ten siblings. The church uses a lay ministry; there is no preacher or clergyman as other religious groups know them. Thus, our finding that family involvement ameliorated guilt may have been particularly strong because of the family orientation of the sample. And the absence of a minister in the decisions also may have been unique to this sample. We attempted to compensate for the family bias by treating the family as a single entity rather than counting the involved members individually. Additional research on this and other samples is needed to evaluate the importance of particular family members, size of the family, and the significance of religious factors.

Future research should explore some unanswered questions raised by our data. The severity of problems, the identity and specific number of family members, and the doctor's involvement all should be examined. In addition, we should note that we focused on aspects of the patient that constituted external justification. It may be that other external factors (for example, families in which both partners work, or in which there is a new baby, or in which financial resources preclude taking in a sick invalid, etc.) also would warrant a nursing home transfer unaccompanied by strong feelings of guilt.

REFERENCES

  • 1. Brody EM: Long-term care of older people. New York, Human Services Press, 1977.
  • 2. York JL, Calsyn RJ: Family involvement in nursing homes. Gerontologist 1977; 17:500-505.
  • 3. Sanford JRA: Tolerance of debility in elderly dependents by supporters at home: Its significance for hospital practice. Br Med J 1975; 3:471-473.
  • 4. Mills J: Unpublished analysis of perceived choice. University of Missouri, Columbia, 1970.
  • 5. Harvey JH, Jellison JM: Determinants of perceived choice, number of options, and perceived time in making a selection. Memory ¿r Cognition 1974; 2:539544.
  • 6. Harvey JH, Johnston S: Determinants of the perception of choice. Journal of Experimental Social Psychology 1973; 9:164-179.
  • 7. Jellison JM, Harvey JH: Determinants of perceived choice and the relationship between perceived choice and perceived competence. J Pers Soc Psychol 1973; 28:376-382.
  • 8. Latane B, Darley JM: The Unresponsive Bystander: Why Doesn't He Help? New York, Appleton-Century-Crofts, 1970.
  • 9. Mynatt C, Sherman SJ: Responsibility attribution in groups and individuals: A direct test of the diffusion of responsibility hypothesis. / Pers Soc Psychol 1975;32(6):1111-1118.
  • 10. Arkin RM, Gleason JM, Johnston S: Effect of perceived choice, expected outcome, and observed outcome of an action on the causal attributions of actors. Journal of Experimental Social Psychology 1976; 12:151-158.
  • 1 1 . Walster E: Assignment of responsibility for an accident. / Pers Soc Psychol 1966; 3:73-79.
  • 12. Kagehiro DK, Werner C: Divergent perceptions of officers and inmates: The blame the other, expect to be blamed effect. Journal of Applied Social Psychology, to be published.
  • 13. Johnson MA: Preparation for nursing home admission*. A survey of families with implications for nursing. University of Utah, 1981.
  • 14. Erdos PL: Professional Mail Surveys, New York, McGraw-Hill, 1970.
  • 15. Guilford JP, Fruchter B: Fundamental Statistics in Psychology if Education, 5th ed. New York. McGraw-Hill, 1973.
  • 16. Beaver ML: The decision-making process and its relationship to relocation adjustment in old people. Gerontologist 1979; 19(6):567-574.
  • 17. Hirschfield IS, Dennis H: Perspectives. In Ragan PK (ed): Aging Parents. Los Angeles, University of Southern California Press, 1979.
  • ACKNOWLEDGMENTS
  • Special appreciation is extended to Margaret Dimond, PhD, and Kathy King, MS, for their help with this project.
  • Work on this project was supported in part by funds from the Professional Nurse Traineeship Grant #2A11NU0022305 from Department of Health ¿r Human Services, U.S. Public Health Services.

TABLE 1

SYMPTOMS OF PATIENTS PRIOR TO ADMISSION

TABLE 2

PERSONS MAKING THE DECISION FOR ADMISSION: CORRELATIONS, POSSIBLE CORRELATIONS, AND RESULTS OF REGRESSION ANALYSIS

10.3928/0098-9134-19821101-07

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