Approximately 8% of older adults in the VS are homebound, most as a result of functional limitations from chronic illnesses. Despite dependence, most older adults prefer to remain in their own homes rather than be institutionalized where medical and social services are readily available.1
The advantages of remaining in one's own home are numerous, even if the older adult needs constant or intermittent assistance. The major advantage is closer proximity to sources of emotional support such as family members, pets, friends, and neighbors. The home setting permits the older adult to maintain privacy, allows older adults to maintain more control over their environments, and promotes more independence than any other health setting.2
Functional limitations threaten older adults' independence and ultimately their ability to remain in their own homes if sufficient in-home services are not available. In-home services to homebound persons are mainly provided by unpaid helpers, who are usually family members. Paid services to homebound older adults consist mainly of homemaker services, home-delivered meals, and home visits by community-based health services.3
Difficulty in gaining access to the homebound population has resulted in a lack of quantitative and qualitative research into their perceptions of what it is like to be homebound and how the types of services they require differ from those of other older adults in the community. Research in this area is needed to develop an understanding of their unique perceptions and the types of assistance they need to remain in their homes. The purpose of this research was to discover what it was like to be homebound.
Older adults' perspectives were explored using ethnographic methodology. Ethnographic methods provide a comprehensive understanding of a phenomenon and are especially beneficial in exploring new areas for study.4
Data were collected by tape recording interviews and taking extensive field notes, which were later typed verbatim. The length of each interview ranged from Ila to 3 hours. Three interviews were needed to complete data collection. One informant, due to an acute illness, was unable to be interviewed more than once and was the only informant who preferred not to be tape recorded. Two main questions were asked on the first interview: What is it like for you to be confined to your home; and please describe a typical day. The responses of each older adult were reviewed following each interview, and subsequent interviews were scheduled to ask informants to clarify and expand on their responses.
The convenience sample of seven chronically ill homebound older adults was obtained from the caseload of a southeastern, voluntary visiting nurse agency. Informants were homebound according to Medicare guidelines: a normal inability to leave one's home without assistance. Two informants were confined to bed; two were restricted to wheelchairs; and three informants were ambulatory with the assistance of a walker or cane.
Of the seven informants, three had not left their homes in the past year. Four informants reported leaving their homes fewer than five times a month. The length of time the informants reported being homebound ranged from 13 months to 9 years.
The sample of five females and two males ranged in age from 73 to 86 years. Three informants were married and lived with their spouse; three were widowed, living alone; and the last informant was single and lived alone. The informants in this study lived within a corporate area of a southeastern state and were English-speaking, lower to middle class Americans.
The data collected were best separated into two categories: the informants' descriptions of the events causing them to be homebound and their feelings about being homebound; and the informants' descriptions of how they spent their day: Although not specifically asked about the types of assistance they received, all informants discussed how they felt about those persons who now assisted them, the quality of the care they received, and how they felt when they needed to request or accept assistance from others.
Qualitative analysis of their discussions about being homebound and receiving assistance reflected an underlying theme of loss. Their initial loss of independence related to various physical disabilities produced concurrent losses in their lives. As a result of theii functional disabilities, they experienced losses in independence, theii social network, their financial status and their sense of personal control.
Older adults are particularly vulnerable to loss as a result of the phenomen of concurrent loss. Concurrent losses! are those that result from a core loss or as a direct result of a particular lost person, object, or part of self.5
Loss of Independence
As the informants described what it was like to be homebound, they described in detail what it meant for them to be dependent on others. The loss of independence was an explicitly stated loss by all informants. The degree and consequences of this loss in their lives differed among the informants.
The loss of independence for four of the informants was acutely realized when they lost the ability to drive a car. One described this loss as follows:
One night one man called me and I couldn't see the phone number and I knew it was time to stop that (referring to driving a car). I've been without my driver's license for 6 years now. I miss it so.
All informants were dependent for transportation as well as shopping needs. Informants having immediate family in the area were able to acquire needed transportation and shopping assistance with less effort than those without family. Although they acknowledged that family members were available and usually willing to assist them, they resented the need to ask for assistance.
For many informants, their perceived loss of independence produced a concern that they would become a burden those on whom they depended. This concern was expressed by one of the der adults in the following way:
I have been independent all my life. I never had to depend on anyone, it kills me to have to ask people to do things for me.
The informants needed various mounts of assistance with personal nd housekeeping tasks. Although six iformants could rely on family, neighors, or friends for assistance, they voided asking for the needed ssistance until it was absolutely necesary.
Losses in Social Networks
A social network is a structural interelated network of family, friends, eighbors, and social acquaintances who provide psychosocial and instruiental support.6 The size of an individal's social network is affected by age, narital status, and sex.7
All of the informants expressed losses in their social networks as they described friends and amily members they had lost due to leath. They expressed the feeling that hey had been left. The losses of friends nd family members due to their deaths vere not concurrent losses resulting rom their loss of independence. However, their loss of independence produced for all informants other quanitative, and especially qualitative, osses in their social network.
One of the informants expressed this oss as she described her friends at hurch. I. R. described herself as the of person who "always assisted hose persons who have been passed by." Since becoming homebound, she egretted that she was no longer a ource of support.
The informants saw their friends less ince becoming homebound and xpressed qualitative changes in their elationships with friends. They no onger engage in the same activities with friends, and since becoming omebound, the initiative to visit the other must be that of the friend.
The loss of their ability to visit decreased the amount and types of social contact the informants now experienced. This loss was perceived and expressed by all informants. The loss of social support from these relationships as well as from relationships they had lost due to the deaths of friends and relatives left all informants with a small number of persons on whom they could depend for physical assistance and emotional support.
Loss of Financial Independence
Medical expenses and the need to hire assistance for personal care and household tasks produced losses in finances for the informants. The three informants without children maintained minimal financial independence by severely cutting paid services in their homes. Four informants had children who provided various degrees of financial assistance.
The loss of independence produced the need for the informants to rely on others for assistance. The need to pay for assistance produced the concurrent loss of financial independence for four informants and severely threatened this loss of independence for the remaining three informants.
Loss of Personal Control
The loss of independence produced a concurrent loses of personal control. Perceived lack of control is theoretically linked to the concept of powerlessness,8 impaired coping ability,9 and helplessness.10 In research, the perception of control has been related to adequate coping," and an increased life satisfaction.12 Research has identified that the link between control and other psychological measures was not the actual act of control, but the meaning that control had for an individual.13
The lack of personal control has been identified by various authors as a negative consequence of the aging process14*15 and a negative consequence of chronic illness.8,15 Learned helplessness has been described as a result of lack of control due to the aging process that was compounded by the disabling effects of chronic illness.16
Perceptions of loss of control were evident in the informants' descriptions of their feelings about being homebound, their fears and concerns, the persons who assisted them, and how they spent their days. One frequently expressed personal loss of control was the loss of ability to schedule activities without considering the time schedules of caregivers.
One informant waited more than 2 months for a dental appointment due to scheduling problems. L. D. needed to coordinate a trip to the dentist on a day that the van took that particular route, but not a day that L. D. was scheduled for a home health aide visit. He voiced concern in canceling a scheduled home health aide visit for fear that the agency would not reschedule the visit on another day.
For two informants with indwelling catheters, the inability to control when they could receive needed nursing assistance from the home health-care agency was a major source of concern and worry. L. D. described the following incident:
I had trouble with my catheter over the weekend. Nobody came here Thursday to change it. I called again on Friday. I talked to J. (a visiting nurse) and she asked me how it was working. At that time it was working. At 12:30 Saturday night I woke up with a terrible pain. I irrigated it and the water spitted back at me. I waited and called the answering service at 6:00 a.m. 1 knew they weren't working then, but I wanted to make sure that they got my message. S. (the visiting nurse on call) called about 7:00 a.m. and she told me she would be over before 8:00 a.m. I waited; 8:00 came and went. I called again and S. answered and 1 told her nothing was coming through. So she came over and changed it. She told me she had only one. I was sitting in my chair later and I looked down and the catheter was almost all the way out. I shoved it back in and called the service again. S. said she didn't have any my size left. I told her that B. (another visiting nurse) lived a few blocks from here. So she was over. She was lucky to catch B. at home, she was just going out. It has been working fine since. I really worry about it plugging at night.
Control over daily schedules was complicated by the time it took informants to perform regimens necessitated by their chronic illnesses, especially if the regimen's performance required assistance from a caregiver. L.D. spent almost 1 hour per day preparing the equipment and irrigating his catheter. Due to generalized weakness, he spent another half hour putting his elastic stockings on each morning. Another informant stated it took most of the morning with the assistance of her paid homemaker to care for her colostomy.
Besides the loss of control over time, many informants expressed incidents when they were not in control of their immediate environment. H. P. related such an incident about her daughter-inlaw after expressing gratitude for the assistance she provided:
Now she comes in this apartment and she throws everything away. And that upsets me. It really upsets me. She throws things away that I have on that table, where I sit a lot.
The loss of control over one's caregivers created, for many of the informants, the knowledge that a serious fall, a caregiver's illness, or the unavailability of a family member would mean they could not be able to stay in their homes. When LR. discussed what would happen if she were unable to get in and out of her wheelchair unassisted, she finished with the following:
I can't bear to go to a nursing home. And that is what 1 would have to do since B. (her daughter-in-law) can't take care of me.
Losses in personal control were also implied by informants as they discussed their fears and concerns. Fears and concerns resulted from situations over which they perceived no control over aspects of the environment, their disease process, or their personal safety. A bed-bound informant expressed her fear of fire as follows:
I'm afraid only of fire. If a burglar comes in, what can he take? If he wants to kill me, go ahead and end it all. The only thing that I am afraid of is fire.
The most striking example of the loss of personal control was expressed by Mr. F, a homebound informant who cared for his bed-bound wife:
But 1 have to hang on for Mrs. F. She needs me. I don't know what will come when something happens to me. I am in so much pain. I am always in pain. I take that Bsrcodan three to four times a day. I don't sleep well. I get up at night and I have to take a sleeping pill and then I am sleepy in the morning. But I have to get some sleep. It's too bad. But I have to hang on for Mrs. F.
The core loss of independence pre duced concurrent losses in the oldt adults' perceptions of personal contre of their own bodies, their time, th assistance they received from others their safety, and even their own immed ate environment. Loss of control is concurrent loss resulting from loss independence, and a negative consej quence of aging and chronic illness.
Although small, the sample reflecte! characteristics of the aged. The averag age of the sample placed them in th old-old category of older adults. Th living arrangements of the sample als< reflected the living arrangements o most non-institutionalized older adults since most older adults live in a one- 1( two-person household.17
The informants' perceptions of bein J homebound reflected acceptance o their condition. Negative feelings wen expressed about the functional limita tions and other physical changes tha had resulted from chronic illness an< aging; however, being homebound wa not expressed as a negative conse quence of their illnesses.
The resiliency and creative abilities! of these older, homebound adult! became eminently apparent as the olde adults discussed their daily lives sine« becoming homebound. Each relate< unique and innovative changes they ha< made in their environment and lifestyh to remain as independent as possible.
Physical changes in their environ ment ranged from moving their sleep ing area to a more convenient part of tht home to making structural changes ii their homes. However, the changes ii lifestyles to remain in their homes were more dramatic and less acceptable t( the older adults. All of the informants ir this study restricted their activities ani took few risks to prevent falls. Falls were expressed by all as a potential foi them to become more dependent ant possibly necessitating nursing home admission.
The initial loss of independence! experienced as a result of chronic ill* less subjected the older adults in this study to occasional and situational feelings of powerlessness. Powerlessness is in individual's perception that their ctions, behaviors, or decisions will not effect an outcome. Older adults are vulderable to feelings of powerlessness due to multiple sensory losses occurring as result of the aging process itself, as well as losses in their social networks fund financial status. The aging process decreases physical strength, energy, and reserve to cope with the challenges of managing diminished health. Miller proposed that increasing older adults' and chronically ill individuals' perceptions of power would increase their selfesteem and physical reserve to cope with new challenges. Miller suggested what health professionals use anticipatory guidance to assist older adults in inticipating and preparing for future challenges. Other interventions included refocusing older adults on their strengths and areas of control, that they had all the necessary knowledge to control events, and assisting them with realistic goal-directed behavior. Empowering older adults to care for themselves provides them with the confidence to manage their self-care and their illnesses and maintain quality in their lives.8
IMPLICATIONS for nursing
Homebound, chronically ill older adults share many characteristics with older adults who are not shut in; howthere are differences that have evere implications for their survival in the community. The major difference is small social network on which homesound persons can depend for physical and social support. Their remaining are usually middle aged to older adult children: a generation of children that, for the first time in history, will spend more years of their lives caring for their dependent parents or spouses than were spent raising dependent children.18
Even the most willing and motivated family member does not possess unlimited physical abilities, emotional stamina, or financial and social resources to provide long-term, continuous care to their aging family members. Nursing and other health-care professionals must be knowledgeable regarding community resources that assist the small number of dependent older adults and that provide relief to family members. Totally relying on capable, interested family members is not the answer for ensuring the continued ability of older disabled adults to remain in their homes. The answer lies in balancing the needs of the chronically ill older adult, the available community resources for which they are eligible, and family resources.
Two resources often neglected by nursing are the creative ability and motivation of older adults. Nursing education's primary focus on acute care skills is partially responsible for this neglect. Basic nursing education courses are concerned with the teaching of those skills that nurses perform for patients, such as bed baths and dressings. Less initial emphasis is placed how to teach patients daily living skills or being with patients as they devise strategies to adapt to various physical limitations. Most patients, even if cared for in acute care settings, will eventually return to the community and will need to perform independent living skills. Those with chronic illnesses also may need to adapt to altered lifestyles. We need to educate our practitioners on how to teach patients and families to care for their disabled family members by using several communication vehicles, such as the lay literature, published instructional manuals, and video.
The lay literature is assuming responsibility for educating individuals as to the needs of the aging population and how families can assist them. Psychology Today printed an article on how families can adapt the environment of older adults to compensate for their sensory losses.19 Several books available in public libraries also address promoting independence and care for dependent older adults in the community.20"22 These resources are well-written, easyto-read, and provide valuable practical solutions to some very difficult dilemmas. A dilemma distinctly addressed is an older adult who becomes unnecessarily dependent. Authors suggest that family caregivers first obtain a functional assessment of their older adult family member prìor to providing services that may foster unnecessary dependence and ultimately exhaust family resources.
A second recommendation of several lay publications is how families can obtain and pay for a case manager to coordinate the provision of services to older members.18'19·2123 These publications discuss how to find assistance, what types of assistance are available, basic eligibility requirements for some services, and payment sources for services. One article specifically addressed concerns of families who do not live in the same community as their aging family members.23
Most community health nurses are aware of services in their immediate community, but must begin to acquaint family members on where to go for information on community resources and how to secure resources. When working with chronically ill individuals, creating dependence on agencies that may be willing and financially able to provide services only during acute crises must be avoided. Agencies must provide clients with written material as to the extent and financial cost of their services and alternative sources of support. Providing individuals with choices increases their sense of control and power.
Community nurses, with minor changes in their nursing practice, could enhance the perceptions of personal control and power among homebound older adults. An awareness and respect for the daily routine and time schedules of older adults and the scheduling of home visits in consultation with homebound adults and their families would promote older adults' sense of personal control over their time.
Increasing chronically ill older adults' knowledge of their illnesses and the regimens involved will also increase their sense of personal control and power. Use of lay literature to provide the patient and family with information, as well as providing written pamphlets and instructions to which patients can refer between home visits would also assist older adults. With the increasing availability of video cassette players in homes, agencies should begin to produce videos for instructional purposes. Videos are already available for the teaching of insulin administration, and others could be developed and loaned to patients until they become confident in their ability to perform needed regimens.
A special concern of older homebound adults needing nursing's technological skills is that the service is not always available. Community nursing services must appreciate this concern and begin to offer 24-hour home emergency services for their homebound patients. The knowledge that service is available, even if not needed, will enhance perceptions of control of older adults over their health and their physical ability to remain in their homes.
Nursing needs to assist in the political arena to ensure the balancing of available funds and support services to reach the older adult population at risk. Nursing organizations and individual nurses must educate local, state, and federal legislators on the long-term care needs of chronically ill older adults, as well as educating older adults.
Excellent vehicles for reaching older populations are nutritional settings and their organizations, especially the American Association of Retired Persons. Lay publications addressing concerns of older adults are also excellent communication vehicles.24
Nursing must become involved in the development of community support services. They must offer their expertise into the unique needs of homebound older adults during the inception and implementation of community based services and intervene to ensure that this population receives needed community services. Community nursing services, with the assistance of local and federal monies, need to establish and monitor homemaker and housekeeping assistance programs for dependent adults in our communities. Caring and involved professionals could provide supervision of mese services to prevent the occurrence of unethic practices. The physical safety an| financial security of dependent old adults in the community needs to If preserved if victimization is to be pn vented.
Nurses must also become aware <j the social and political potential in ot homebound elderly and identify ways 1 mobilize this energy to promote ti health of other homebound persons the community. Homebound old adults could become support systems t| each other. This involvement may assi older adults to perceive greater contrrJ over their social environment and mail tain social contact with others.
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