A call for help by a patient's wife is a plea that cannot be ignored. As nurses, do we fully understand the effect of our interactions on families? Do we know how the patients' families perceive our role and their own? Do we provide them with opportunities, in a nonjudgmental way, to share their concerns about care, to question our actions, and to become partners with us as we develop goals for the cognitively impaired patient?
During a telephone conversation with a clinical nurse specialist in a longterm care facility, the wife of a patient stated hesitantly: "I need help to understand what is happening to my husband and to myself. He has been in the institution so long and still I need to learn how to tell the nurses and doctors what I feel when I see disturbing things about his care. I'm sure that other wives whose husbands are institutionalized have similar feelings and problems. What we need is a meeting of wives. This might help us sort out some of our feelings and find ways to deal with our problems. Sometimes I get so upset and I don't know what to do. I'm not sure that the nurses and others know just how we feel. Things seem so overwhelming . . . . " She continued to discuss the stressful aspects of visiting her cognitively impaired husband who had been institutionalized for several years.
Many people think that once a person places a loved one in an institution, the burden and responsibility for the care of that person becomes the institution's. Thus, the spouse or family members are supposedly relieved of a heavy load. In reality, the burden only changes in its dynamics. The spouse or family must now wade into the healthcare system, interact frequently with health professionals, and become the observers and advocates for their family member.1
The Support Group
Because of the request made by the patient's wife and the findings in the literature about support groups, a wives' support group was developed by a clinical nurse specialist and a psychology resident under the auspices of our longterm care facility. This group met over a seven-week period for ten 60- to 90-minute sessions. Of the ten women who participated in the group, seven had spouses with a specific diagnosis of Alzheimer's disease and three had husbands who suffered from dementia with chronic obstructive pulmonary disease, Parkinson's disease, or congestive heart failure. The women in the group ranged in age from the mid-SOs to the early 80s.
Numerous investigators have identified several purposes for such groups.1"14 Community- and institution-based support groups, according to the literature, provide family members with opportunities to share their personal experiences and emotions, thereby allowing them to recognize that they are not the only ones having to face their particular dilemmas. Support groups assist in developing or extending adaptive coping behaviors by engendering mutual support and providing participants with opportunities to ventilate their feelings, by allowing group members to serve as role models and sources of empathy, by examining various problem-solving alternatives, and by focusing on the positive aspects of caring for or interacting with ill relatives.
Support groups also may become educational forums during which participants learn more about the nature and progress of specific disease processes; about the availability of social, legal, and financial resources; and about the nature and standards of care as provided by health professionals. In addition, group members may develop an increased awareness of effective communication strategies, which may be used when advocating what they perceive to be optimal care.
Finally, according to the literature, support groups tend to center on the needs of the family members and emphasize increasing feelings of selfesteem and confidence, instilling a sense of hope and reducing a sense of isolation.
Consequently, the goals of the institutional-based wives' support group established in our long-term care facility were to provide the group members with an opportunity to:
1 . Participate in a group in which support, camaraderie, and a sense of belonging develop;
2. Ventilate their feelings and share their concerns in a nonjudgmental forum;
3. Identify and clarify their feelings and determine various means by which these feelings may be dealt with more appropriately and readily;
4. Experience a sense of universality by seeing and hearing that other wives are confronted with similar concerns and feelings;
5. Identify and evaluate their present lifestyle with the potential for making modifications and for using the group as a facilitator in the process; and
6. Identify learning needs and acquire new information and a deeper understanding of relevant issues.
The format of the group sessions was variable in that the co- leaders introduced topics for discussion at some meetings and left the choice completely open to the wives at other sessions. The co-leaders also made considerable use of active listening when responding to the group members.15
The results of an anonymous, openended, and forced choice evaluation questionnaire given to each participant at the end of the ten meetings were very favorable and encouraged continuation of such a group. Hence, the support group we organized and conducted was apparently of value to the women involved. The co-leaders also learned much of relevance to healthcare professionals from listening to the wives of institutionalized, cognitively impaired patients.
After each meeting, the co-leaders independently recorded the content of the group discussion. They compared their notes and, at the end of the ten sessions, the documentation on each meeting was categorized into themes.
During the group discussion the broad topic of coping became the central focus. Other authors have noted similar findings.3·16·17 The wives in our group discussed at length five main themes related to the process of coping with their situation. These themes included universality and uniqueness, patient advocacy, visiting, communication, and patient-care issues. In addition, changes in lifestyle and decisionmaking patterns were topics that were discussed extensively by the women. These topics will not be elaborated in this article since their focus tended to be outside the hospital setting.
Universality and Uniqueness - The insight of universality (ie, sharing common experiences) was discovered by the wives in our group during their discussions. These women expressed both relief and, at times, surprise at finding out that they were not unique in terms of their experiences, but that they had similar problems and feelings to other wives in the group. The literature clearly demonstrates the prevalence and value of this universality theme.3·17 For example, Zarit and Zarit14 indicate that support groups allow the participants to share information and thereby help them to understand better their own similar experiences. Steuer and Clark11 and Lazarus, et al18 also state that the insight of universality and the verbal sharing of experiences familiar to the other participants foster group cohesion.
However, not only did the discussions identify universality as a theme, but they also brought to light the importance of the women's feelings about their own uniqueness. What was generally observed by the co-leaders was that the women acknowledged an overall similarity in their situations and problems, but at the same time insisted that their circumstances were not exactly alike and that the group had to recognize each person's unique perspective. Throughout the ten meetings, the wives reminded one another of the differences in their individual situations and of the need to modify any problem-solving alternative. It was vital for the women to feel that they were not perceived as being the same as other women in the group. Surprisingly, the support group literature does not highlight this aspect of group discussion. If this theme has arisen in other support groups, researchers have not deemed that it is significant enough to report.
Advocacy - The wives in our group viewed as extremely important their role of patient advocate (ie, becoming the husband's spokesperson and identifying his needs, rights, and personal values). The wives' knowledge that their spouses were often unable to communicate their needs clearly, elicited much worry in these women. At times, the wives had concerns about patientcare issues, but did not necessarily verbalize these worries to the nurses. The participants indicated that these concerns or problems became exacerbated at home when they thought about what their spouses must experience when no one was there to speak for them.
The women recognized that nurses were also patient advocates, but viewed the nursing role of advocate as different from their own. The wives realized that nurses were concerned about the wellbeing of their patients and that the nurses would notify the spouse if anything untoward happened to the husband. However, the wives felt that they were the people who knew and best understood their husbands' unspoken needs, values, and expectations since the women had lived with their spouses for 30, 40, or 50 years. The group participants felt that nurses could not possibly fully perceive these needs. In the final analysis, the wives saw themselves as having truly vested interests in their husbands' care and as having the moral responsibility to be patient advocates.
Our group participants decided that a telephone check-in arrangement would be useful to them. Whoever happened to be visiting on a particular day could check on the other wives' spouses and inform these women of how their husbands were doing. It was believed that such an arrangement would serve to reassure the wives who would not be visiting that day.
Despite the importance of patient advocacy, there is little in the support group literature that deals with this issue. Clark and Rakowski1 allude to patient advocacy and indicate that this activity is one of a number of social tasks expected of the family of an institutionalized patient. Interestingly, these authors note that a type of buddy system similar to the one created by the women in our support group also has been considered by other groups as a strategy for maintaining an information link for the spouse or family when they are not visiting the institutionalized relative.
Visiting - Most wives in our support group visited daily. Two women visited at least three or four times per week and all spouses visited for several hours at a time. The women agreed that they were not visiting out of a sense of guilt. They stated that they preferred to be with their loved ones and, therefore, visited out of personal preference and desire. The wives indicated that they received feelings of satisfaction, contentment, and fulfillment from their visits. They thought that they were not only contributing to their husbands' quality of life, but were also receiving some personal pleasure from being with their husbands. Thus, the women saw their visits as having reciprocal benefits. They also thought that their patient advocate role could be partially ftilfilled through their visits to their spouses. At the end of each visit, the wives reported experiencing a feeling of sadness as they departed, alone, from the long-term care facility.
Steuer and Clark11 note that in their support groups, women had difficulty with the idea of not visiting their husbands seven days a week. These "walking widows" were concerned that they would be needed by their spouses and be unavailable. These wives recognized this belief as fulfilling a "magical need for maintaining control" since there was probably nothing they could actually do. However, York and Calsyn19 report a negative correlation between the families' enjoyment of their visits and the cognitive impairment and selfcare disability of the patient. Hayter17 emphasizes that "families may not know what to say to the patient when they visit. The nurse can be the vital link in maintaining communication between patient and family. " The nurse can, for example, encourage families to continue talking to the patients even when they do not respond directly and to walk along with the patients throughout the nursing unit. Such suggestions by the nursing staff might increase the degree of satisfaction experienced by spouses, other relatives, and friends who visit cognitively impaired, institutionalized patients.
The wives in our support group also discussed the visits by friends and relatives. Frequently, the women stated feelings of bitterness, resentment, and anger toward their friends and relatives who did not visit. However, these reactions and the underlying expectations of the women were generally not shared with those relatives and friends involved. The wives expressed reluctance at doing so and indicated that they believed that these people should recognize their own obligations themselves. For the most part, the women did not think that their uncommunicated expectations were unrealistic.
The literature also makes mention of negative feelings toward friends and relatives.20 Hartford and Parsons16 have found that although some of their support group members felt bombarded by "helpful" suggestions from relatives, others felt resentful that their relatives did not help more. These investigators conclude that their group members needed to learn how to make more appropriate use of their relatives. Also, researchers have reported that support from relatives and friends can lessen the feelings of burden for the care-giving wife or family.21·22·14 "Visits from relatives were found to be far more important than the severity or duration of the illness or any behavioral problems involved."22 Indeed, nurses in community and institutional settings can encourage "relatives to visit by letting them know how much difference mat makes" to the disabled person's spouse.17 Furthermore, it is important for nurses to urge visitors to leave some documentation of their visits so that the spouse and family can be aware of these visits and can give appropriate recognition.
In our support group, the women agreed that when there were visitors, wives would prefer to be present so that they could act as a support and mediator for both their husbands and the visitors. The women expressed the belief that visitors came not only to see their husbands, but also to see them. One wife indicated that she and her husband met visitors in public places, such as sitting lounges and reception areas, which seemed to her to be more conducive to socializing than nursing units. The women in our group concurred that even if more visitors came, their own frequency of visiting would not decrease. The visits of other relatives and friends were not viewed by the women as a substitution for their own visiting, but rather as a valuable adjunct.
Communication - In general, the women's discussions on communication dealt with their interactions with healthcare providers. If the wives perceived that their relationship with a particular nurse was good, then they felt that communication was not a problem. However, if the group participants thought that they were not being heard or listened to when they spoke of their concerns related to their husbands' care, then what seemed to them initially as a small issue became magnified into a problem. The women stated that in this situation they felt less positive about nursing and less confident about the care their husbands were receiving. In the literature, the residents of longterm care facilities also expressed the expectations of being heard.23 These elders indicated that they expected the nurse to be willing and able to listen to what they wanted or thought and to take it seriously. The wives in our support group wished for similar respect when they communicated with staff.
Initially, our group participants were prepared to place all blame for communication problems on staff, but as the support group meetings proceeded, the women began to identify negative aspects in their own behaviors that could cause a defensive response from others. The wives discussed verbal and nonverbal behaviors that frequently provoked anxiety, anger, and resistance in themselves and in other people, including healthcare professionals. The group discussed effective communication strategies, which could assist the women in stating their needs more assertively but not in an aggressive or adversarial manner.
Zarit and Zarit14 note: "Contrary to public stereotypes, families do not readily abandon their older relatives and in fact will take on the burden of visiting them . . . and interacting with the staff." Not only do families experience the stress of seeing a relative in an institution, but they must also handle the problem of communicating with the care givers. Similarly Clark and Rakowski1 state that one particularly stressful task reported by the families who participated in their support groups was that of interacting with healthcare providers.
Several approaches have been suggested to reduce the difficulties encountered by patients' families and staff when communicating and interacting with one another. Blackman24 encourages the use of communication programs for healthcare providers, which would assist them to interact more effectively with questioning, anxious, or angry relatives. He suggests that such programs would enhance family and staff relations. Support groups have been shown to have a positive effect on staff and family interactions. In one study, nursing staff reported that communication with those who attended the meetings was excellent and that the participants were more receptive to explanations and less hesitant to discuss their concerns.4
Communication programs for family members might also assist them to interact more effectively with staff and to resolve problems concerning patient care.
Patient Care Issues - The wives in our group stated that their overall expectations for their husbands' care centered on kindness, dignity, and good care. The women became anxious and had less confidence in the nursing care being given when inconsistencies occurred. Such variations as frequent changes in transfer procedures and nursing care routines were described by the women as creating in them a sense of uneasiness. A few wives were intolerant of any variations in nursing care procedures even when the actual outcomes of such changes proved to be satisfactory. The wives expected that the care would be documented and followed to the letter by all nursing staff. Thus, the women questioned that if the nursing care plans for their husbands contained the correct nursing orders, why the plans were not followed precisely. The wives supported the idea mat the same nurse should care for their husbands as frequently as possible because then the approach and care would be consistent. Indeed, the women, in regard to their expectations for care, were clearly endorsing a primary nursing perspective.25 Grau's study23 of residents' expectations parallel those of the wives in our group. Grau has found that residents of long-term care facilities desire "respect for the individual's dignity, attention to small gestures that may not be essential but do personalize care and promptness on the nurses' part." The wives in our groups wanted these things for their husbands as well.
Indeed, the discussions of our group concerning patient care revealed many interesting reactions, which are helpful for health professionals to know and seek to understand. One wife indicated that she felt guilty if she saw that the care being given her husband was not the same as she had provided at home. Similarly, another wife stated, "I feel guilty if care is not as I see it should be. " The wives agreed that they became angry when the standards of physical grooming and appearance of their husbands were lower than they expected, even if this occurred irregularly. One wife felt that if her husband realized that he was unshaven or that food remained at the corners of his mouth, he would be very upset. She indicated that it hurt her when his appearance was not maintained at all times.
Hayter17 reports that families do have less enjoyable visits when patients are dishevelled. Thus, when the wife's standards of grooming are not met, her attitudes and responses to care givers may be extremely negative. Sheldon10 notes that guilt and anxiety may make it difficult for families to accept substitute care and to work with staff. She suggests that if staff can enlist family members' help "as partners, a more successful transition from home to institution can be achieved." Also, families who vent anger on staff over trivial details have been found to be basically uncomfortable with their decision to place their loved one in an institution.4 Similarly, Steuer and Clark11 conclude that behind the routine questions of family members lurks "a good deal of emotional need and burden." Indeed, these pent-up feelings may surface as unrealistic expectations when wives observe and interact with staff about their cognitively impaired husbands' perceived care needs.
In general, the women in our support group whose husbands had been diagnosed as suffering from Alzheimer's disease were knowledgeable about its concurrent physical and mental changes. However, these women were frequently unwilling to relate the effect of this disease and its subsequent deterioration to their spouses' behavior and appearance. One wife indicated that she had never allowed such deterioration to take place when she had cared for her husband. The women alluded to relocation and inconsistencies in care in the institution as reasons for changes in behavior and appearance of their spouses rather than the disease process with its progressive deterioration.
These responses may indicate that the women were using denial as a coping strategy. Denial by the family early in the disease may be useful "to lessen the emotional impact" but continued use of denial "is counterproductive in that it fosters unrealistic expectations about the patient . . . and interferes with planning."3 To promote acceptance of the changes due to the disease, researchers have demonstrated the usefulness of support groups as members listen to participants talk week after week about patients at all stages. These authors conclude that support group members gained further understanding of the disease and had "more appropriate expectations and less guilt concerning" their relatives' behaviors.3 By the end of our ten group meetings there did seem to be some movement in this direction on the part of some of the group participants.
The discussions and interactions of wives in a support group whose husbands were institutionalized and cognitively impaired reveal much of value for nursing practice.
* Nursing units on which such patients are cared for should sponsor support groups for the spouses.
* Nurses should recognize that it is important to such wives to see themselves and to be seen by others as unique individuals, each in somewhat different circumstances.
* Nurses should understand that the wives of cognitively impaired, institutionalized patients believe that they know their husbands' needs, values, and expectations better than the nurses do. The wives therefore view their role of patient advocate very seriously.
* Nurses should remember that when these women think that nursing staff are not listening to and taking seriously the concerns that the wives raise about their husbands' care, the women feel less positive about nursing, less confident in the care provided, and magnify small issues into major problems for themselves and for the staff.
* Nurses should keep in mind that the wives of institutionalized, cognitively impaired patients become upset when there are frequent changes in transfer procedures and nursing care routines, when nursing care plans are not followed precisely by the staff, and when the standards of the patients' grooming and appearance are lower than expected by the women, even when such lapses are infrequent. Nurses should minimize such changes and omissions, whenever possible, and understand that guilt about the institutionalization of the spouse or denial of the advance of Alzheimer's disease in the husband may result in a wife's unrealistic expectations of her husband and of nursing staff.
* Nurses should recognize that many wives of institutionalized, cognitively impaired patients derive feelings of satisfaction, contentment, and fulfillment from their frequent and lengthy visits with their husbands and that these women believe that such visits improve life for their spouses.
* Nurses should encourage any friends and other relatives who do visit the patient to continue doing so for the sake of the spouse, if not for the patient, and should inform the wives of all such visits.
* Nurse researchers should investigate whether the reactions of men with institutionalized, cogniti vely impaired wives are similar to the concerns and adaptations made by women with institutionalized, cogniti vely impaired husbands.
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