Journal of Gerontological Nursing

Family Caregivers' Attitudes Toward Aging, Caregiving, and Nursing Home Placement

Nancy Fleming Courts, PhD, RN, NCC; Beth E Barba, PhD, RN-C; Anita Tesh, EdD, RN-C

Abstract

ABSTRACT

Nursing home placement (NHP) is stressful both for older adults and for their family caregivers. This descriptive survey research investigated family caregivers' attitudes toward aging, their emotional appraisal of nursing home placement, and their reactions to caregiving roles. Eighty-eight survey packets were mailed and 35 usable packets were returned for a response rate of 39.5%. Sixty-four percent of the respondents were age 65 or older. Respondents reported that they felt "privileged to care" for their residents and that caregiving had little impact on their personal schedules. Further, they did not feel abandoned by other family members. Fifty percent reported feelings of sadness when thinking about nursing home placement though they indicated that they were mostly pleased. The respondents had mostly positive attitudes about aging. It may be that those who responded to the survey were coping at a high level. Caregiver reactions might differ in the group that did not respond. Included are specific nursing implications and needs for further research.

Abstract

ABSTRACT

Nursing home placement (NHP) is stressful both for older adults and for their family caregivers. This descriptive survey research investigated family caregivers' attitudes toward aging, their emotional appraisal of nursing home placement, and their reactions to caregiving roles. Eighty-eight survey packets were mailed and 35 usable packets were returned for a response rate of 39.5%. Sixty-four percent of the respondents were age 65 or older. Respondents reported that they felt "privileged to care" for their residents and that caregiving had little impact on their personal schedules. Further, they did not feel abandoned by other family members. Fifty percent reported feelings of sadness when thinking about nursing home placement though they indicated that they were mostly pleased. The respondents had mostly positive attitudes about aging. It may be that those who responded to the survey were coping at a high level. Caregiver reactions might differ in the group that did not respond. Included are specific nursing implications and needs for further research.

Nursing home placement is stressful for both the nursing home resident and the family (Ferris, 1992). The current cohort of frail older adults has a negative view of living in a nursing home. Many adamantly protest nursing home placement. Institutionalization is viewed as extending quantity but reducing quality of life (Knox & Upchurch, 1992). These negative feelings affect family caregivers' attitudes toward aging, emotional reaction to nursing home admission, and reactions to caregiving.

In general, movement to a nursing home becomes necessary when an older adult becomes cognitively impaired, incontinent, or requires high levels of physical and instrumental care, or when the caregiver becomes unable to provide care because of physical illness, emotional fatigue, or death. In addition, length of caregiving is also a factor affecting institutionalization (Nielsen, Henderson, Cox, Williams, & Green, 1996). The decision to relocate a parent, spouse, or other relative may be the last option when other plans have been unsuccessful (Matthiesen, 1989).

Many authors report that family caregivers experience both grief and guilt after nursing home placement and this guilt persists over time (Coleman, Piles, & Poggenpoel, 1994; Johnson, 1990; Johnson & Werner, 1982; Matthiesen, 1989; Nielsen et al., 1996). Nursing home placement distress, concern about the type and level of care the loved one is receiving, inadequate staff, and staff attitudes continue to worry caregivers (Brody, Dempsey, & Pruchno, 1990) so family caregivers visit to monitor and assure good care (Kelley, Wanson, Maas, & Tripp-Reimer, 1999). The caregiver role continues with institutionalization (Langner, 1995).

There are, however, positive outcomes of institutionalization. The problems leading to institutionalization strain relationships. Nursing home placement, then, can renew a previously close bond because the caregiver is freer to become more sensitive and involved in fulfilling psychosocial needs (Smith & Bengston, 1979). Caregivers at home, maintaining a number of roles, tended to become involved in specific caregiving interventions. When freed from these responsibilities, they became available to develop closer relationships. Further, caregivers may be able to view their loved ones in more realistic terms and begin to accept their physical and emotional limitations (Smith &: Bengston, 1979).

Moving to a nursing home does not end family involvement or responsibility. Both those who cannot care for themselves and those who are independent rely on their social environment for emotional support (Walker, Pratt, & Eddy, 1995). Family caregivers have a responsibility to provide emotional support to older adults even though basic physical needs are being met in the care facility. Thus nursing home placement does not signify the end of caregiving (Walker et al., 1995). Archbold (1983) has identified the family care manager as one who contracts for and "manages" care provided by others.

Caregivers who provide some help to institutionalized loved ones continue to feel involved. They have a sense of fulfilling their responsibility and may, therefore, experience less guilt (Brody et al-, 1990). Even when caregiving tasks are minimal, many institutionalized older adults need caregivers to advocate for them (Mallet, 1993). Family caregiving responsibilities continue in the nursing home. This research investigated family caregivers' attitudes toward aging, their emotional appraisal of nursing home placement, and their reactions to caregiving for nursing home residents.

METHOD

Design

The study used a descriptive survey design. Permission to conduct the study was granted by the Institutional Review Board (IRB) of a university in a southeastern state. The cover letter explained the study, defined a family caregiver as the person to be called when needed, and explained that return of the survey package indicated consent to participate.

Procedure

Family caregivers were identified from resident admission forms. The residents were m the skilled nursing care section of a private nonprofit, church-related continual care community. The research instruments, cover letter, and a stamped selfaddressed return envelope were addressed by facility staff to protect residents' and caregivers' privacy. The outside envelopes were stamped with the name and address of the facility. Eighty-eight survey packets were mailed and 35 usable packets were returned, for a usable return rate of 39.5%. Anonymity of family caregivers prevented collecting information on those who did not respond.

Instruments

The four instruments used in the study were:

* The Aging Opinion Survey (AOS).

* The Caregiver Reaction Assessment (CRA).

* The Emotional Appraisal of Nursing Home Placement Tool (EANHP).

* The Caregiver Profile Booklet.

Aging Opinion Survey. The AOS contains 30 statements with a 5-point Likert response scale from "strongly agree" to "strongly disagree." Some of the statements are negative and thus are reverse scored (Kafer, Rakowski, Lachman, Sc Hickey, 1980). There are three subscales with 10 items each. The Stereotypie Age Decrement subscale identifies stereotypical attitudes toward known older individuals, with lower scores indicating more negative views of aging (Katz, 1990). The Personal Anxiety Toward Aging subscale reflects anxiety, fear, uneasiness, or dread about personal aging. The Social Value of Aging subscale examines general attitudes toward older adults and their place in the community. Higher scores indicate more positive attitudes (Katz, 1990). Coefficient alphas for reliability of the instrument with 45 items ranged from 0.60 to 0.78 (Kafer et al-, 1980). Five items in each subscale with the lowest correlation of item-to-total were eliminated, leaving a 39-item instrument (Kafer & Delaney, 1988).

Table

TABLE 1Means, Standard Deviations, and Cronbach's Alphas for the Subscales on the Aging Opinion Survey (AOS), Caregiver Reaction Assessment (CRA), and the Emotional Appraisal of Nursing Home Placement Tool (EANHP)

TABLE 1

Means, Standard Deviations, and Cronbach's Alphas for the Subscales on the Aging Opinion Survey (AOS), Caregiver Reaction Assessment (CRA), and the Emotional Appraisal of Nursing Home Placement Tool (EANHP)

Caregiver Reaction Assessment. The CRA has 24 statements with a 5-point Likert response choice from " strongly disagree to * strongly agree." There are five subscales: Impact on Schedule, Caregiver Esteem, Lack of Family Support, Impact on Health, and Impact on Finances. Impact on Schedule (5 items) determines the extent to which caregiving interferes with activities and relaxation time. Caregiver Esteem (7 items) determines if caregiving is rewarding and enjoyable or induces resentment. Lack of family support (5 items) assesses the cooperation among family members and feelings of abandonment by the primary caregiver. Impact on Health (4 items) examines the caregiver's physical ability and energy level to meet caregiving demands. And finally, Impact on finances (3 items) assesses any financial strain or difficulty. Interscale correlations are low, with the highest correlation (r = .45) between the schedule of the family member and higher health, indicating independence among the subscales (Given et al., 1992). Subscale internal consistency alphas are 0.82 for Schedule, 0.90 for Esteem, 0.85 for Lack of Family Support, 0.80 for Health, and 0.81 for Finance. Even though the subscales are short, the degree of reliability is high (Given et al-, 1992). For this study, the statement "enough physical strength" was changed (with the authors* permission) to "enough energy."

Emotional Appraisal of Nursing Home Placement Tool The EANHP lists 19 emotions. Respondents are asked to indicate on a 5-point scale from "not at all" to "a great deal" the extent to which they have experienced each emotion during the past several weeks when thinking of nursing home placement of their older adult (Kammer, 1994). The original list of emotions (Folkman & Lazarus, 1985; Lazarus, Kanner, Folkman, 1980) was revised by Kammer. There are four subscales: Threat, Challenge, Harm, and Benefit. The instrument is scored by summing the ratings across each emotion and dividing by the number of items. Kammer identified Cronbach alphas of 0.83 for Threat, 0.68 for Challenge, 0.78 for Harm, and 0.75 for Benefit.

Caregiver Profile Booklet. The Caregiver Profile Booklet was designed to collect information about caregivers such as demographic data (e.g., age, education, marital status, health), degree of relationship satisfaction experienced before and after the older adult moved to a nursing home, and identification of individuai^) making the decision to enter the nursing facility. In addition, respondents were asked to identify the most stressful and the most positive aspects of their experiences with the nursing home resident and were given an opportunity to share any information they wished the researchers to know. Before use in the study, the questionnaire was given to three family caregivers to evaluate readability and understandability. Minor revisions were made in the questionnaire based on their suggestions.

RESULTS

Sample

Nine (25.7%) of the family caregivers were between age 45 and 64, 19 (54.4%) were between age 65 and 75, and 7 (20%) were age 76 and older. Twelve respondents were men (34.3%) and 23 were women (65.7%). The relationships of caregivers to patients varied.

Table

TABLE 2PERCENTAGE OF RESPONDENTS (N = 33) CHOOSING ITEMS ON THE SUBSCALES OF THE AGING OPINION SURVEY (AOS)

TABLE 2

PERCENTAGE OF RESPONDENTS (N = 33) CHOOSING ITEMS ON THE SUBSCALES OF THE AGING OPINION SURVEY (AOS)

Table

TABLE 3PERCENTAGE OF RESPONDENTS (N= 35) CHOOSING ITEMS ON THE SUBSCALES OF THE CAREGIVER REACTION ASSESSMENT (CRA)

TABLE 3

PERCENTAGE OF RESPONDENTS (N= 35) CHOOSING ITEMS ON THE SUBSCALES OF THE CAREGIVER REACTION ASSESSMENT (CRA)

There were 4 spouses, 13 daughters, 6 sons, 2 daughters-in-law, 1 sister-in-law, 3 nephews, 2 nieces, 1 sister, 1 cousin, and 2 legal guardians. Twenty-six (76.5%) were married, 2 were single, and 7 widowed. Twelve (34.3%) had undergraduate degrees and 1 1 (31.4%) had graduate degrees, 9 (25.7%) had some posthigh school education, 2 (5.7%) had completed high school, and 1 (2.9%) had completed Grade 8. Twenty-five (71.4%) were retired. Seventeen (.63%) of the caregivers' spouses were retired. Twenty-one (61.7%) of the family caregivers reported they were in good health. All respondents were White.

Aging Opinion Survey

Overall, these respondents expressed positive opinions about aging. In terms of Stereotypie aging, a majority of participants reported that older adults learn easily (56%). They did, however, identify agereiated changes such as hearing loss (64%) and could see "the years creeping up on friends" (66%).

They believed that elderly individuals maintain their appearance (64%) and have an interest in interacting with others (76%). They tended to believe older adults become observers (47%), cannot work as hard (44%), lose social status (42%), sit around the house more (41%), and worry over health status (41%). (Table 1 shows mean, standard deviation, range, and Cronbach alpha, scores and Table 2 shows percentages of respondent answers.)

In general, this sample did not identify high levels of anxiety about their own aging (Personal Anxiety subscale). The majority were not anxious about the future (65%) and denied dreading the appearance changes of aging (74%). More were worried about health (56%) than about money (38%). They agreed they would have friends (52%) and reported no fear of outliving their spouses (33%). More would choose staying young over the joys of grandparenting (67%).

On the Social Value of Aging subscale, the majority agreed that older adults are a great undeveloped resource (74%) and have a wealth of knowledge (82%). They believed that retired adults influence public policy (82%) and that youthful opinions do not count more than the notions of elderly individuals (62%). They did not view older adults as a burden (49%), but they thought older adults experience less respect and privacy (79%). The majority (56%) agreed that older adults should be expected to do more.

Caregiver Reaction Assessment

The respondents identified positive feelings and enjoyment in caring for their residents on the Caregiver Esteem subscale. More than 80% of these participants said they felt privileged (81%), and really wanted to care for their elderly relative (86%) because "caring is important to me" (89%). No one identified strong feelings of resentment about caring for their elderly relative. They reported little physical burden in terms of fatigue and lack of energy. The majority of participants reported they had enough energy (67%) and were healthy enough (78%) to function as family caregivers. They did not think that caregiving had a negative impact on their health status (73%).

Caregiving had little impact on personal schedules. The majority of respondents did not report work interruptions (85 % ), eliminating activities (53%), contending with interruptions (67%), or visiting family and friends less (64%). Thirtynine percent (39%), however, reponed they had eliminated activities from their schedule.

Table

TABLE 4PERCENTAGE OF RESPONDENTS (W = 33) CHOOSING ITEAAS ON THE SUBSCALES OF THE EMOTIONAL APPRAISAL OF NURSING HOME PLACEMENT TOOL (EANEI)

TABLE 4

PERCENTAGE OF RESPONDENTS (W = 33) CHOOSING ITEAAS ON THE SUBSCALES OF THE EMOTIONAL APPRAISAL OF NURSING HOME PLACEMENT TOOL (EANEI)

The majority (57%) of family caregivers felt supported by other family members. Caregivers did not feel "abandoned" (95%), "dumped on" (71%), or "left alone to care" (67%). More than half reponed that the family worked together to care for the resident (57%). For most (59%) financial resources were adequate and they reported no financial strain (81%) (Tables 1 and 3).

Emotional Appraisal of Nursing Home Placement

This tool measures the emotional reactions of caregivers when they think of their loved ones moving to nursing homes. The participants reported mixed emotions on the subscale Threat. Although 53% were not worried, 4 1 % did report worry. Again, while the majority (59%) did not feel anxious or apprehensive, almost a third (30%) reported feeling anxiety and apprehension.

In terms of Challenge, caregivers identified feeling confident (65%) but most did not feel hopeful (55%) or eager (52%) although some felt enthusiastic (35%). In the subscale Harm, a feeling of sadness was identified by 50% of the participants. More than three fourths of the participants said they had no feelings of anger (79%), guilt (79%), disgust (77%), or hurt (77%). Scores on the subscale Benefit indicated that participants felt pleased (62%) and somewhat happy (47%) and relieved (38%) about the nursing home placement (Tables 1 and 4).

Seventy-five percent of the caregivers reported that the decision to enter the retirement community was made by the resident alone or by the resident and family together. Six (17%) identified that the decision was made by the family only. Three (8.6%) decisions were made by others - guardian or physician, or facility staff with support from family.

Family caregivers were asked to rate their relationship to the older adult before admission to the nursing home and after admission on a scale from 1 to 10. Thirteen (37%) reported a decrease in satisfaction with the relationship, 10 (29%) an increase in satisfaction, and 12 (34%) no change. Twenty-one percent visited the resident weekly, 39% several times per week, and 18% daily. Ninety-one percent of the caregivers reported that other people also visited the resident.

In response to the open-ended questions, 32 caregivers commented on a variety of stressful situations. Many (14) identified communication and memory problems and 8 identified physical decline as stressful. Specific comments included:

* "Her biting tongue."

* "My mother still expects me to make everything "right."'

* "Having to repeatedly bring her up to the present"

* "Must tell me all the pain she's in."

* "Bad breath and poor hygiene. "

* "Doesn't accept restrictions."

* "Very self-centered, could care less about what is going on in my life.. .jealous of time I spend with my children, and grandchildren."

* "Angry if I don't call daily."

* "Daily complaining and negative attitude."

Caregivers (N = 34) also identified some positive resident attributes. These comments include:

* "He is always glad to see me and expresses appreciation for what I do for him."

* "Roommate's daughter is particularly nice to her."

* "Resident always knows me, her daughter."

* "My aunt is very personable and tries to be helpful with the nursing home staff."

* "Mother enjoys the children who come."

* "A caregivers' group that was helpful...is a must."

* "She is always very pleasant and shows appreciation for our being there."

* "My mom loves visitors-she has kept her social graces.. .welcomes you, tries to introduce you..."

* "Best describe her mental condition as though her mind is a large file cabinet, all the people she knew are there."

DISCUSSION

This study investigated caregiver attitudes toward aging, reactions to caregiving, and emotional reactions to nursing home placement. The majority of family caregivers were older than age 65. Their attitudes toward aging were mainly positive. The study respondents believe older adults are still valuable and involved. They had little anxiety about their own aging, perhaps because they were older and not only still managing independent living but also very involved in activities and caring for others. They felt that older adults are an undeveloped resource and should do more.

Perhaps caregivers might like a more active part in addressing social problems or institutional policies and would participate if asked. To explain, family caregivers could provide programs, work with individual residents, and form an advisory board to problem-solve and help with institutional policies. They could be more actively involved in the activities of the nursing home, working with residents in ways that staff are unable to work.

In this sample the decisions were made mainly by the resident or the resident and family. This decisionmaking process is similar to previous findings. Johnson and Werner (1982), for example, found that less caregiver guilt was experienced when older adults had cognitive or mobility deficits and when both family and patient had made the decision.

Kammer (1994) found that sharing the decision to enter the nursing home was important in decreasing negative emotional reactions to nursing home placement. Conversely, more than half the daughters interviewed at 70 days after admitting their mothers into nursing homes expressed doubts about the decision and were distressed about the placement (Johnson, 1990). Matthiesen (1989) found that daughters expressed "unrelenting feelings of guilt" about nursing home placement (p. 13).

In this study, residents' average length time in the skilled facility was 27 months, so family caregivers may have had time to adjust. Further, this is a facility where residents move into independent living and progress to assisted and then skilled care. Thus, they may be comfortable with care progression and more accepting of nursing home placement than those who move from independent living into skilled care.

These family caregivers felt that their families cooperated in providing care. None felt abandoned. This is consistent with other findings that family functioning influences the emotional well-being of caregivers (Carnuti, Tate, Moffett, & HtU, 1997). Most respondents did not identify overwhelming feelings of threat or harm. They felt confident, suggesting that the level of care their loved one was receiving was consistent with their expectations. More than half, however, said that they did not feel hopeful. They were aware that the resident would not improve. Unlike samples in some other studies (Coleman et al., 1994; Johnson, 1990; Johnson & Werner, 1982; Matthiesen, 1989; Nielsen et al., 1996; Smith Oc Bengtson, 1979), this caregiver sample reported no feelings of guilt, suggesting they understood the demands of care and accepted being physically unable to provide that care. The participants felt pleased and somewhat happy and relieved when thinking of nursing home placement. These participants were care managers and because the majority of physical care was provided by others, they had time to attend to psychosocial needs.

Thirteen (37%) participants reported a decrease in relationship satisfaction with the resident. In some cases this decrease occurred because the resident had a change in health status. For residents who experienced cerebral vascular accidents or worsening of dementia, communication difficulties may have interfered with relationship satisfaction. Even when there are communication impairments, family caregivers do not give up caregiving (Kelley et al., 1999). However, 10 participants reported improved relationships with the resident. Despite overall positive responses, several caregivers did cite stressful aspects of caregiving in response to the unstructured component of the survey.

LIMITATIONS

There are several limitations to this study. First, the respondents were all White and well educated, and the residents were financially secure enough to be admitted to the facility. Further, they were self-selected. It may be that those who responded were coping at a high level. The emotional reactions to nursing home placement and to caregiving may be very different in the group that did not respond. Also, emotional reactions to nursing home placement and caregiver reactions to caregiving were assessed at one period in time - responses may change over time.

This nursing home consistently received "no deficiency" ratings from state inspectors, indicating a high level of care. No comparison group of caregivers from other institutions limits generalization. Finally, social desirability may have influenced responses.

PRACTICE IMPLICATIONS

The data suggest that nursing home placement can occur without causing overwhelming feelings of guilt and anger in family caregivers. This is important information for family caregivers thinking of nursing home placement. Even in this sample, however, there are data to suggest the need for caregiver interventions.

As care managers, family caregivers could benefit from psychoeducational support, including educational sessions to design ways to include the whole family in the decision-making process and remain involved with their relative after nursing home placement. In nursing homes that provided family members an opportunity to participate, family caregivers reported cooperating with staff to provide care (Friedemann, Montgomery, Maiberger, & Smith, 1997). Programs designed to relieve stresses of family caregivers and increase their involvement in institutional programs and policies are needed (Blasinsky, 1998).

Family caregivers need help to understand and process negative comments from residents because continued family involvement may ameliorate guilt, especially in families with strong bonds (Johnson & Werner, 1982). Family group sessions beginning on admission and including information about the aging process, family and resident adjustment process, and ways to increase visiting satisfaction are valued by family caregivers (Drysdale, Nelson, & Wineman, 1993) and could help family caregivers maintain or gain positive relationships. Environmental enhancement that allows residents to become involved with animals, plants, and children have a positive affect (Thomas, 1996), thus improving resident relationships with both family and staff.

The quality of family caregiver visits and caregiver-staff relationships affects outcomes (Brody et al., 1990), and family caregivers of nursing home residents feel involved and view themselves as assisting (Bowman, Mukherjee, & Fortinsky, 1998). Therefore, family caregivers can benefit from information about the best times to visit (Matthiesen, 1989), suggestions about outings, and opportunities to participate in activities with their older relative, for instance. Meetings to increase communication between staff and family caregivers may assure better resident care as they learn to work together to plan and execute care. Finally, family caregivers who are positive and satisfied could lead educational groups and help orient new family caregivers.

Further research is needed with family caregivers of nursing -home residents. A larger sample from a more diverse population would provide a clearer picture of family caregiver reactions and needs. In particular, research is needed to identify the reactions and problems of family caregivers of nursing home residents of different ethnic groups and lower socioeconomic levels, including those on Medicaid. Investigation of how resident health status effects family caregiver reactions and visits is needed to expand development of theory in this area (Kelley et al,, 1999). Research is needed to identify the individual who the resident would identify as the caregiver. Finally, more research on nursing interventions for family caregivers is needed to delineate the best ways to integrate residents into the environment and support family caregivers and residents.

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TABLE 1

Means, Standard Deviations, and Cronbach's Alphas for the Subscales on the Aging Opinion Survey (AOS), Caregiver Reaction Assessment (CRA), and the Emotional Appraisal of Nursing Home Placement Tool (EANHP)

TABLE 2

PERCENTAGE OF RESPONDENTS (N = 33) CHOOSING ITEMS ON THE SUBSCALES OF THE AGING OPINION SURVEY (AOS)

TABLE 3

PERCENTAGE OF RESPONDENTS (N= 35) CHOOSING ITEMS ON THE SUBSCALES OF THE CAREGIVER REACTION ASSESSMENT (CRA)

TABLE 4

PERCENTAGE OF RESPONDENTS (W = 33) CHOOSING ITEAAS ON THE SUBSCALES OF THE EMOTIONAL APPRAISAL OF NURSING HOME PLACEMENT TOOL (EANEI)

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