Despite efforts to include client and family perspectives, it has been our experience that the nature of institutional life is still heavily determined by health-care professionals acting alone. The purpose of this article is twofold: to illustrate the need for institutionally based staff to value the knowledge and experience of family and community health-care professionals; and to describe strategies that would facilitate collaboration in the long-term care setting.
A number of authors have described differences in the priorities and perspectives of family members and professional caregivers. Bowers (1987) challenges health professionals to understand stress from the perspective of the caregivers; that is, from the purpose of the caregiving activity rather than the nature and frequency of the task itself. Matthews (1987) pointed out that elderly persons are likely to bring their own "team," consisting of family or other supportive persons, to negotiate with the health-care team; thus ensuring some control as well as input into decisions affecting them. Matthews indicated that some evidence exists to support the observation that "what the elderly client and family see as problems with 'living arrangements' are redefined by health professionals as 'medical problems/ and by receiving agencies as 'management problems.' It is still not clear how their divergent views are reconciled, nor which group has the most influence on the final outcome."
Behaviors of long-term care residents, such as becoming demanding and seeking attention in an obvious way, are viewed as problematic, and staff tend to respond by avoiding those residents (Rosenthal, 1980). From our observations, it appears that behavior in institutions is accepted by staff based on whether it is considered "normal." Doubts arise as to the origins and legitimacy of any deviant behavior, such as too much crying or too many special requests. Such behaviors often get interpreted as deliberate attempts by residents to manipulate staff or to get more attention for their needs than is warranted, and at the expense of other residents.
According to Bowers (1987), one of the major difficulties arises from the different priorities of the family and the health professional. The families' priority is protecting elders from the knowledge that they require care, which Bowers terms "protective caregiving." Not only does it protect the elder from consequences that cannot be prevented, but it also helps to maintain the elder's identity and the nature of the relationship that the family caregiver has always had with the elderly person.
In the Bowers study, primary caregivers overwhelmingly chose protective caregiving as a priority, whereas less involved family members and health professionals considered what Bowers terms "preventive and instrumental" caregiving as more important. Preventive caregiving has to do with altering the physical environment to increase safety, and instrumental caregiving is described as "doing for, providing, and assisting," which health professionals feel is their role and mandate. Some of the difficulty may arise, as Bowers suggests, from the low priority placed on this type of caregiving by families, which may be perceived by health professionals as not "being valued." Hence, there develops staff struggles to have their work and their priorities acknowledged and accepted as the "right" ones.
The following case history of Mr D illustrates how the inclusion of the families' perspective and the findings of community health-care professionals could have circumvented a number of problems and enhanced the quality of Mr Us life after he had been placed in a long-term care facility. Collaboration rather than confrontation would have also enhanced Mrs D's feelings of security, self-worth, and control.
Mr D was first seen by a community psychogeriatric team at the age of 73 years. The identified problem was postsurgery confusion that had not completely cleared. For example, Mr D would at times misidentify his wife of 46 years as a housekeeper, and he would then search for his wife, upon whom he had become very dependent. Throughout the team's involvement, Mr D had to be closely monitored concerning depressive symptomatology, which seemed to result from fluctuating insight into his deteriorating cognitive abilities.
Mr D completed his military service during World War II in France, Germany, and Holland, attaining the rank of Major. He was the owner and manager of a successful insurance firm following the war until his retirement. While raising two children, he and his wife maintained an active connection with the military, belonging to several groups and culminating in Mr D being made an Honorary Colonel by the Army.
Following his surgery and subsequent return home, people involved with Mr D in various organizations observed that he was having problems coping with his previous responsibilities, so they gave him easier tasks to complete. Mr D's pattern of activities at home were as follows: he woke up, had his breakfast at a time of his choosing, and would either take the public transportation or be driven to a military museum meeting, returning home afterwards for supper. Mr D's foods, appropriate dress, and bus routes were carefully supervised by Mrs D. He could, however, wear the same shirt that he had worn for the past 5 days. Mrs D was willing to accept the risk that her husband might get lost on his travels, and the other members of the museum committee were mindful not to ask Mr D to take on any major responsibilities. Committee members also structured Mr D's tasks and monitored the results by having him work with another member he had known well over the years.
After being placed in a long-term care facility, Mr D was not permitted to go downstairs to enjoy the afternoon concerts by himself as there was a risk of his becoming lost. Lack of staff to supervise and accompany him to activities greatly restricted the activity level of this formerly very busy and productive individual. Mr D was having periods of incontinence, which Mrs D felt were compounded by his being physically restrained in his chair and thus having to wait for nursing assistance.
One particular issue that arose with Mr D, his wife, and the staff of the long-term care facility concerned his medication. Mr and Mrs D had brought to the attention of the community psychogeriatric team that Mr D had been very sensitive to medication all his life. It had been noted in the hospital file that a bout of the flu had resulted in an increase in confusion for a brief period. However, when he wandered off the unit in search of his wife, he was given a small dose of a major tranquilizer. This increased his agitation to the extent that he was climbing onto windowsills and becoming actively resistant against the staff who were trying to help him.
He received increasing doses of medication and was physically restrained in his chair, which he eventually tipped over. When his wife became adamant that he was overmedicated and that he had always been very sensitive to any kind of medication, she was viewed as unreasonable and accused of denying the severity of his illness. Efforts by a member of the community psychogeriatric team to be included in a case conference regarding Mr D were politely but firmly discouraged. When Mr D exhibited more traditional signs of side effects, the dosages of medications he was taking were drastically reduced.
The primary strategy must be to provide an individualized approach by trying to look at situations through the eyes of the client and family. It has been said that the goal of nursing involvement is to assist and encourage family self-care. Bowers (1987) states that "nurses and other health-care professionals may lack an adequate understanding of the family caregiving experience, precluding effective. . . intervention. What many family caregivers consider their most important work, protection, is often not considered at all by health-care professionals."
Relating this to our case, Mrs D allowed Mr D to go independently to his various meetings. Mr D felt that he was functioning at a responsible, competent level, thus not adding to his underlying depressive feelings related to declining cognitive function. This was an attempt by Mrs D to maintain not only Mr D's selfconcept, but also the normal marital pattern of behavior. In the institution, Mr D's preventive care was given higher priority; for example, he could not go downstairs independently for fear of getting lost or hurt. Thus, Mr D's decreased competence was emphasized to him.
When we consider that self-esteem is comprised of both the intrinsic, or self-approval, and the extrinsic, or social reinforcement, it is evident that implications of lack of competence are going to decrease one's selfesteem. This, in turn, may decrease motivation, increase depressive symptomatology, and thus begin a downward spiral from healthy functioning to increased dependence.
Bowers (1987) states: "Failure to recognize the occurrence and significance of protective caregiving can lead nurses to inappropriately assess a family member as uncooperative or noncompliant." When Mrs D downplayed Mr D's physical combativeness, a consulting health professional wrote, "Despite the fact that behavioral disturbance was evident in the home, Mrs D unreasonably asserts that the medications are causing the behavioral problem." It had already been established that Mr D had a long history of increased sensitivity to medication. Even though the medication may have helped Mr D, it would have been better to try to understand Mrs D's perspective and gain her knowledgeable cooperation rather than deeming her "unreasonable." This kind of insensitivity to the situation, along with the consultant's influence on staff, helped to set the stage for increased staff/family conflict.
We believe that providing education to staff in long-term care facilities about family caregiving will enable them to better understand and help maintain family competence. Such education can be accomplished in part by including community health professionals and individual family members in case conferences. Long-term care administrators may also enhance staff knowledge and awareness by promoting attendance at educational sessions regarding the role of the family in caregiving both before and after institutionalization.
Staff must be helped to recognize the impact that caregiving has on the mental health of the family caregiver. Mrs D was feeling depressed, anxious, angry, resentful, guilty, helpless, embarrassed, demoralized, and fatigued for approximately 2 years prior to her husband's admission to the long-term care facility. Through understanding these common caregiver feelings, staff can empathize with the family and help families to manage their feelings better.
Mrs D coped with many of Mr D's difficult behaviors on her own when he was at home. She surely had important information to share with the team regarding her husband's management. As health professionals, we must acknowledge that the family was functioning before we arrived on the scene. Our role is to enhance the family unit, not to take over. Rather than becoming defensive or hurt when a family member questions treatment, staff must be able to listen to the concerns, provide information and emotional support, and modify the care plans, as necessary.
Robinson and Thorne (1984) address what they call "family interference behaviors"; that is, when family members feel that they know how to help the patient better than the health professional and may, in fact, sabotage care plans. They suggest that we look at this behavior within the context of the evolving relationship between families and healthcare providers, rather than seeing these behaviors as natural consequences of hospitalization or indicative of long-standing family pathology. This relates back to issues such as Mrs D's concern about the medication and physical restraints used on her husband.
Three significant factors in any major change are the needs for a sense of security, or the knowledge that one will be looked after; predictability, or the knowledge of the facts; and control, or the ability to make some choices or have decisionmaking power (Beck, 1982; Pohl, 1980; Rosswurm, 1983). These overlapping areas should be examined in relation to both residents and families.
Mrs D had the impression that staff felt Mr D's behaviors were the worst of any resident. She was also told that the facility was not geared to handling "wanderers." This led to insecurity and a question in her mind as to whether Mr D would be cared for properly. Health-care professionals must verify what the family understands from treatment discussions. Family members should be consulted and made to feel part of the health team. The family can then continue the advocacy role that was established when the resident was still at home. This will foster a sense of working together with the healthcare professionals. To have a sense of control, one has to feel that one has input into decisions.
The families have to know which staff members to talk to about specific aspects of care. Trying to have a consistent primary caregiver makes a big difference. Mrs D talked about feeling like crying when her husband's primary nurse was switched. At the same time, the summer student volunteer left. The new primary nurse was also new to the facility, and after a 2-week period, Mrs D had not met her. Mrs D talked of how much better she felt when the staff initiated contact and appeared responsive to her concerns. She still had some worries about the use of medication and physical restraints, but felt that the staff cared and were trying to do the best they could.
The amount, kind, and method of imparting information and sharing decision making will obviously vary according to many factors, such as the needs of the resident, setting, type of illness, and personalities of residents, families, and health-care team. Strategies to facilitate collaboration among long-term care residents, their families, and staff must include involving the family and community health professionals as members of the health-care team, and increasing staff awareness of the effects of institutionalization on the famUy.
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- Bowers, BJ. Intergenerational caregiving: Adult caregivers and their aging parents. ANS 1987;9(2):20-31.
- Matthews, A.M. Movement of the elderly into long-term care: Processes of decision making. Presented at the 16th Annual Scientific and Educational Meeting of the Canadian Association on Gerontology, October 22-25, 1987, Calgary, Alberta, Canada.
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