In the United States more than onethird of persons aged 65 and over are hospitalized each year. Chronic illnesses are often cited as the reason for admission (National Center for Health Statistics, 1992). The experience of being hospitalized is recognized as stressful for the patient (Bull, 1988; Naylor, 1990). It is also a difficult time for family members. This article describes the sources and nature of difficulties family caregivers encounter when an elder is hospitalized for an acute episode of a chronic illness.
Practitioners sometimes view institutionalization of elders as respite for caregivers, yet research suggests that it brings its own set of difficulties (Rosenthal, Sulman, & Marshall, 1992, 1993; Zarit & Whitlatch, 1992). The lack of attention to family caregivers of institutionalized elders in any setting has been attributed to perceptions that family members are no longer providing care or experiencing a toll on their well-being (Rosenthal, Sulman, & Marshall, 1993; Zarit & Whitlatch, 1992).
While investigators have examined how families have been affected by the illnesses of adult family members, few have focused on the families of elders hospitalized for an acute episode of a chronic illness and the difficulties encountered during hospitalization (Leske, 1992b; Rosenthal, Sulman, & Marshall, 1992). Some investigators have examined the stresses encountered in caring for an ill family member at home (Hull, 1990; Martens & Davies, 1990; Yang & Kirschling, 1992); others explored the needs of families who had an adult member hospitalized in a critical care unit (Hickey, 1990; Hickey & Leske, 1992; Kleinpell & Powers, 1992; Norheim, 1989). Hickey (1990) reported that informational needs of family were rated among the top ten needs in eight studies of patients in critical care units. Kleinpell and Powers (1992) found that family members rated informational needs higher than emotional and personal needs. The need to have questions answered honestly was ranked as either the most, or one of the most, important needs of family members (Hickey, 1990; Kleinpell & Powers, 1992; Norheim, 1989). In fact, Leske (1992a) found that family members of persons hospitalized for elective surgery reported less anxiety when they received a progress report halfway through the surgical procedure. While the need for information predominated, family members also reported a need for reassurance and for close proximity to the waiting room or a telephone (Hickey, 1990). In addition, spouses indicated needs for support and comfort (Norheim, 1989).
In a study conducted in Canada, Rosenthal and colleagues (1992) found that family caregivers of longstay hospitalized elders, who were awaiting transfer to long-term care facilities, experienced problems in regard to the patient's reaction to hospitalization, hospital and medical care, family problems, and personal problems. Overall, the most frequently cited problems were feeling torn between the patient's and one's own needs, and feeling upset during visits. Problems with medical and hospital care included delayed, insufficient, or inappropriate care, and lack of communication with and trust in staff. Family members also stated that staff did not listen to them. Furthermore, Rosenthal and colleagues (1993) found that experiencing difficulty with hospital staff was the strongest contributor to depressive symptoms among family members. With shortened hospital stays in the United States, it is increasingly likely that family members might experience difficulties. It is important for nurses to identify the kinds of difficulties family members encounter when an elder is hospitalized in order to promote successful posthospital transitions.
Data were collected as part of a larger longitudinal study in which family caregivers were interviewed before discharge, at two weeks, and at two months post-discharge. In the interviews conducted prior to discharge family members spontaneously offered information about their concerns and the difficulties they encountered during the elder's hospital stay that added to their stress. During interviews conducted two weeks following discharge, family members often reflected further on the difficulties they experienced during hospitalization. In response to family members spontaneously sharing their difficulties, two semistructured questions were added to the pre-discharge interview: How have things been going for you while (insert family member's relationship) has been in the hospital? Do you have any concerns? Interviewers who had been trained in taking field notes recorded responses to the semistructured questions as well as the spontaneous comments made earlier in the study.
The sample consisted of 253 family caregivers (91 of them responded to semi-structured questions; 162 offered spontaneous comments) from six community hospitals located in a metropolitan area in the Midwest. Their average age was 62 years with a range from 20 to 86 years. The majority were white, female, and spouses of the elder. Education ranged from 3rd grade to graduate school with a mean of 13.1 years. Additional demographic information for the family caregivers and elders appears in the Table.
Field notes from interviews with the 253 caregivers were analyzed for themes by the investigator and research assistant. Codes for major categories were developed based on consensual agreement.
The majority (91%) of family members reported at least one difficulty. Analysis of the data indicated four major categories of difficulties: getting the elder admitted, planning for discharge, problems with hospital care, and personal difficulties dealing with the elder's hospitalization.
Difficulties getting the elder admitted referred to the admission process itself. It included delays in admitting the elder to the hospital, specifically the family member's perception that the elder should have been admitted sooner; and problems with care in the emergency room such as getting the wrong medication (i.e., one that caused adverse reactions). Approximately 13% of the family caregivers complained of difficulties with admission. The following comment illustrates the kind of difficulties family members experienced in this area.
I was so bugged that they didn't put her in the hospital two weeks earlier. We knew she was bad but I think that the insurance is afraid to pay so they don't put people in unless they are practically dead. We knew she was bad and they waited and waited before admitting her.
The category problems with hospital discharge referred to the family member's lack of preparation for the elder's discharge, their lack of input into discharge decisions, and problems with coordination of services. Lack of preparation for discharge included several dimensions, all related to insufficient information. Specifically family members had not received information in the following areas: how to set up their living space to best accommodate the elder; what to expect following discharge, particularly in relation to the elder's condition and limitations; and special diets and medications.
In fact, in the interviews at 2 weeks post-discharge family members continued to have many unanswered questions which led to problems in managing the elder's care. For example, inability to recognize symptoms such as dizziness and weakness as side effects of medications sometimes resulted in the elder's readmission to the hospital.
Family members also stated that they were left out of decisionmaking related to discharge. Family members believed that their lack of input into discharge decisions, particularly those concerning admission to, and selection of, a nursing home, added to their stress. Moreover, discharge sometimes came much sooner than they expected, giving them little time to prepare for the elder's return home.
Problems with coordination of services included mistakes with discharge medications, having the wrong equipment ordered or delivered late, and home care personnel not arriving on schedule. The responsibility placed on family members for coordinating care is evident in the following remark.
Demographic Information on Elders and Their family Caregivers
I've spent the past one and a half weeks trying to make arrangements for care. Yesterday I spent six hours on the phone . . . You have to tell the same story several times over. Have to go to several different sources to make everything come together. It's too much on top of everything else you have todo.
The confusion resulting from problems with discharge planning at the hospital is illustrated by this granddaughter's account of her grandmother's return home.
Grandma just got home from the hospital. The van just dropped her off here at her apartment without her oxygen. The nurse is on her way over here. She forgot to give her discharge instructions and medications. The nurse was trying to make a referral for home care and Grandma got wheeled out before the papers got back in her bag.
Twenty-six percent of the family caregivers reported some difficulty with planning for discharge. Interestingly, family members who had been in the caregiving role for less than 1 year expressed difficulties with discharge planning more often than those who had been caregivers for more than 5 years.
Problems with hospital care referred to family member's perceptions that the elder received poor care from physicians, nurses, social workers and/or other hospital personnel. Twenty-one percent of the family members described conditions that were categorized as 'poor' care. Poor care included delays in answering call lights, rude or uncaring behaviors, and unwillingness to answer questions. Family members also reported receiving contradictory information. For example, they described situations in which an internist and specialist said different things with regard to a treatment plan.
Another dimension of poor care was ageism, which was reflected in complaints about uncaring behaviors on the part of nurses, physicians, and social workers. Adult children who were caring for parents were more likely to see these behaviors as age related. The following comment illustrates this: "If mother were a 55year-old man I think they would treat her differently." Another concern related to hospital care was that health professionals fostered the elder's dependency, contributing to an unnecessary decline in their functional ability. The following comment illustrates the nature of this type of complaint.
When Dad came in to the hospital he could feed himself. The nurses' aide has been feeding him since he came into the hospital because it's quicker. Now the doctors say he can't feed himself and they want us to put him in a nursing home. I really had to fight for physical therapy for Dad. We don't want to put him in a nursing home and there's no reason he can't feed himself if they strengthen his muscles.
Approximately 32.3% of the participants reported personal difficulties related to the elder's hospitalization. These included fatigue and stress from running back and forth to the hospital and a perceived lack of support from family and friends. The fatigue was accentuated when family caregivers had competing demands or were in poor health themselves. The following remark illustrates this kind of difficulty.
I don't want it to wear me out. I'm ignoring my husband with trips to the hospital, phoning, and running to his apartment. I'm willing to do it, but not over a period of months in an all-consuming daily manner.
The findings from this study indicate that family members encountered a variety of difficulties when an elder was hospitalized for an acute episode of a chronic illness. Our findings concur with those of Rosenthal and colleagues (1992) with regard to family members' concerns about hospital care and the personal difficulties experienced. Since elders in Rosenthal's sample were awaiting nursing home placement it is possible that there was more time to plan for discharge. In contrast, the majority of participants in our study were returning home or to the home of a relative. The difficulties encountered with regard to discharge planning in our study might be exacerbated by the short lengths of hospital stay in the midwest area of the United States in which the data were collected.
It is important for nurses to: 1) recognize the difficulties family members experience; and 2) develop strategies to alleviate them. Just as nurses assess patient needs upon admission, it is important to evaluate the family member's needs. The fact that family members who had been caregiving for less than one year were more likely to encounter difficulties with discharge planning suggests that this group has greater need for intervention than family caregivers who have more experience. Nurses need to identify the family member's questions about, and expectations for, caring for the elder. Experienced caregivers might be more likely to ask questions on their own; those new to the role might need encouragement to ask questions. In situations where a family member does not drive, telephone communications might be established to inform them of the elder's condition and options available for follow-up care. Children who were caring for parents often worked during the day, and were more likely to visit the hospital during the evenings. It might be important for nurse managers to staff the evening shift in a way that enables staff nurses to meet the informational needs of family members as well as facilitate their participation in discharge planning.
Our findings suggest that leaving the family caregiver out of discharge planning decisions might jeopardize continuity of care for the elder. With shortened hospital stays family members are key persons providing care following discharge. If they are stressed by the hospital experience their ability to function in this role might be compromised. Moreover, when they are not included in plans for aftercare, their lack of information can place the elder at risk for readmission. These difficulties might be lessened if nurses were aware of the nature of family member's difficulties and developed strategies to alleviate them. Nurses are challenged to deliver family-centered care in an environment in whch there is limited time to assess the patient's needs, let alone those of families. Yet from the perspective of family members, it is critical that their needs be addressed. Coordinating care between the hospital and community services is one way in which nurses might assure support to family members. Successful post-hospital transitions might be facilitated by referrals to community nurses who can further assess the needs of both the elder and the family within the context of the home environment and arrange to have the needs met.
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Demographic Information on Elders and Their family Caregivers