Overview of the Major Tenets of the Proposed Expanded Model
Focus group data suggested several propositions concerning the use of long-term care services. First, a set of psychosocial factors, which we characterized as attitudes and knowledge, social norms, and perceived control, were identified as determinants of service use. The detailed articulation of psychosocial factors expands the existing Andersen model (Andersen 1995
) by providing greater depth to this aspect of predisposing factors and is consistent with the Theory of Planned Behavior in social psychology (Ajzen 1991
; Fishbein and Ajzen 1975
). The Theory of Planned Behavior posits a set of factors that influence decisions concerning planned, or intended, behavior. These factors include attitudes or beliefs toward behaviors, subjective and moral norms, and perceived behavioral control (Ajzen 1991
). Although not all long-term care choices can be planned, the theory provides a reasonable conceptual frame for our inquiry. Second, the expanded model proposes a set of complex interrelationships among psychosocial, enabling, and need factors. Finally, our research suggests that the effect of race/ethnicity on long-term care service use may be mediated in part by psychosocial factors (attitudes and knowledge, social norms, and perceived control).
The factors, domains, and themes identified are summarized in . A schematic of the model linking the domains is shown in . Although intended and actual use are depicted in , the focus of our inquiry was intended use. Participants typically described determinants of intended future use, rather than current use. Nevertheless, our analysis suggested that previous service use can influence intended future use through its effect on individuals' current perceptions of services. The influence of past experiences on intentions is denoted in by the dotted line with arrowhead. Because the inquiry focused on intended use, rather than actual use, we have less information about the link between intentions and actual use or the mediating factors that might help explain this link. Hence, we have depicted the relationship between intended and actual use with a dotted, rather than solid line.
Summary of Factors, Domains, and Major Themes
The Role of Psychosocial, Need, and Enabling Factors in Long-term Care Use
Domain of Attitudes and Knowledge
Attitudes were defined as personal views concerning the use of long-term care services and were characterized by four major themes: (1) care providers, (2) affordability, (3) social environment, and (4) self-determination. Attitudes were described as having a direct effect on intended long-term care service use, as denoted by path (a) in .
Care providers (i.e., staff for formal care, family or friends for informal care) were often discussed as participants described their perceptions of long-term care. Two dimensions of care providers (or staff) emerged: their technical expertise and their interpersonal skills. Technical expertise included previous training and experience, supervision, reliability, and knowing how to handle emergencies. In contrast, interpersonal skills included trustworthiness, comfort or compassion, and listening and communication skills. Common statements illustrate these themes.
(First participant): They have a nursing pool that these nursing homes pick from. These women come in and they don't know the patients. They just throw them in there and ask them to do a job. (Responding participant): They're [nursing homes] short-handed; they have to get the help from somewhere. Even if it is not that good. (F 9, lines 1407–16, 1430–32, white)
I have heard of instances where the home care person is not really responsible and doing what they are supposed to do…There have been cases of stealing. I know a few cases like this, and that is a big disadvantage. (F 12, lines 77–9, 82–4, African American).
I had the same [home care] nurse after two operations, and she was more of a friend and just a very concerned and loving person. (F 6, lines 28–31, white)
Most participants mentioned economic concerns. Because one's views about the affordability of services can be distinct from one's objective income and wealth, attitudes concerning affordability were characterized as psychosocial variables while income, assets, and insurance were retained as enabling variables.
Two dimensions of affordability were described: the perceived expense of services and the impact on home ownership. The potential loss of one's home to pay for long-term care service, though closely linked to the perceived expense of service, had a symbolic importance greater than the asset value of the home. People referred to losing their home as losing “everything” or losing “what they worked their whole life for.”
We need to think about this more because a lot of us think we can't afford these things [long-term care services]. We can [afford them], and it does not take that much money; we can. (F 3, lines 1349–52, African American)
(One participant) I wouldn't want to go into a nursing home only because they are so expensive, and I feel I would lose my home that I spent so many years to pay for. (Another participant) I think I would go to any extreme so I wouldn't lose my house. (F 9, p. lines 139–43, 292–3, white)
Social environment was comprised of several dimensions including: social interaction, activity level, familiarity, and diversity. As participants said,
One advantage [of assisted living] is you could be together with people your own age. You can participate in activities. (F 12, lines 158–69, African American)
I think the biggest advantage of home care is the fact that they are in familiar circumstances. They don't have a big disruption. (F 8, lines 72–4, white)
(One participant): You're going to get people of different races and they are cliquish in themselves…. (Responding participant): It's better when there is some sameness…. (Another responding participant): I think some uniformity of background is helpful, but I would hate to have absolutely the same background. (F 7, lines 685–7, 742–3, 751–4, white)
Dimensions of self-determination included privacy, dignity, and independence. Many espoused the importance of these aspects of self-determination and their influence in long-term care decision making. For instance, illustrating the influence of privacy concerns, one participant said about home care staff,
You don't know these people [home care staff], and they are in your home, and you must tell them how you stand, and right away they are going to ask for your social security number. It makes it very hard. (F 10, lines 306–9, African American)
Other participants focused on other dimensions of self-determination, such as dignity in long-term care; for instance, one focus group member said,
It makes it even worse to require this [long-term care services] suddenly, because it takes away all of their dignity. And nobody wants to lose that. It's unbelievable. (F 10, lines 338–42, African American)
Consistent with the Andersen model, knowledge was identified as a determinant of long-term care service use. The interrelationship between knowledge and attitudes was apparent and difficult to disentangle, as illustrated by the following quotation.
If they knew more about it, they would feel more comfortable with it [long-term care services]. (F 3, lines 701–3, African American)
Within the knowledge domain, several themes emerged: the content and amount of information available, the source of the information, and the accessibility of the information. Gaps in knowledge were commonplace among both African-American and white participants, who reported inadequate information about the types of services offered, eligibility rules, legal and regulatory issues (e.g., licensing and supervision requirements), and financial coverage for different services. Sources of information varied greatly and included family, friends, social workers, other medical professionals, lawyers, and clergy. Accessibility of information included its attainability and its comprehensibility. Knowledge was hypothesized to have a direct effect on use, as demonstrated in .
It's information that you don't know, questions you don't know to ask…it's not my field of expertise, so I have no knowledge of what's going on. I am a total layperson. I know nothing. (F 3, lines 739–45, African American)
I would seek the sources of information that I need. What I did was call a visiting nurse who had been recommended, and finally I learned from doctors and nurses in the hospital that there were these home care aides. (F 7, lines 769–74, white)
I guess enough information is given, but it just goes in one ear and out the other. Here I am with guidance and a desk drawer [full of information] and I still don't know what the hell to do. (F 5, lines 515–6, 521–3, white)
Domain of Social Norms
The domain of social norms included two themes: the decision makers who participants considered legitimate sources of authority (i.e., referents), and a set of norms of behavior. Referents and norms of behavior were hypothesized as having a direct effect on long-term care service use, as shown by path (b) in . The role of referents in long-term care decision making is illustrated by these statements.
Well, I would certainly seek the advice of my children and my minister. I would feel more comfortable in talking this through with him, and have him help us come to a decision as to what to do with me. (F 10, lines 1041–6, African American)
She [social worker] gave a lot of very good suggestions about how to cope with living at home. So that's something you have to remember. Every town has a social worker and they can help with this decision. (F 9, lines 959–64, white)
The most common norms described as influencing long-term care decision making pertained to family burden and caregiving expectations. Imagining themselves as long-term care recipients, nearly all participants stated concern about burdening family. In contrast, imagining themselves as caregivers, participants described caregiving expectations.
I'm from the rural south, and you just don't put your parents in a nursing home. (F 3, lines 489–91, African American)
Within some ethnic groups, they're used to taking care of the family one way or another. Therefore, moving out of the family is almost verbotten and very, very traumatic. (F 3, lines 630–3, white)
In addition to the direct effect of social norms on use, social norms may be influenced by enabling factors, as depicted by path (e) in .
Anybody would rather be in the home, rather than go away to a nursing home, but it depends upon whether you have anybody that you can fall back on. (F 3, lines 939–43, white)
This society has changed immeasurably. You no longer have extended family to support you in most cases. So you need these institutions or organizations. (F 7, lines 169–73, white)
Domain of Perceived Control
As the third domain of psychosocial factors, perceived control referred to individuals' perceived ability to effect their choices for long-term care. The perceived control literature is extensive and diverse (Godin, Valois, and Lepage 1993
; Schulz and Heckhausen 1999
; Skinner 1996
; Rodin 1986
). Reflecting participants' discussions, we refer to a circumscribed view of control, pertaining specifically to long-term care use. Two themes characterized this domain: role of choice and approach to planning. Perceived control was hypothesized to have a direct effect on use, as shown by path (c) in .
Role of choice included two dimensions: the decision maker and the feasible alternatives. In some cases, participants described that family, not the individual, makes the long-term care decisions, hence limiting individual choice. Several participants also described the range of feasible alternatives as influencing choice.
We are talking about a no choice situation. In other words, when people are sent off to a nursing home, it is not a matter of choice. (F 8, lines 352–5, white)
There are a lot of people that have to go [to long-term care facilities]. That's the sad part. I think a lot of us would like to keep our people home and take care of them…but the situation gets out of hand sometimes and you have no choice. (F 13, lines 354–9, African American)
The theme of planning suggests that long-term care decision making can be a process that unfolds over time and includes both financial and psychological planning for future needs. Referring to these differing aspects of planning, participants stated:
I can speak for myself. There isn't one darn thing I can do about it [financial planning for long-term care]. My income is set and I don't see much prospect of increasing it. (F 4, lines 697–700, white)
People say “I’m not ready yet.” They have the money. What they don't have is the ability to project what's going to happen if they don't move within a certain framework of time. So I think one of the big things is denial of the situation. (F 8, lines 591–6, white)
Lots of times physically you're not capable of getting from here to there, but where your mind is, that's a totally different case. Even for your family. They could see you in one place, and you could not mentally or psychologically accept it. (F 10, lines 1114–9, African American)
Perceived control was described as being influenced in some cases by enabling factors such as income and service availability, as shown by path (f) in .
Actually, a nursing home is a place where people are forced to go. They don't have the means or money to go to a better place. (F 10, lines 782–5, African American)
My sister couldn't go to that home because they didn't have rehabilitation services in that home. So she had to go somewhere else. So, you don't have too many choices sometimes. (F 9, lines 712–6, white)
Enabling Factors as Determinants of Long-term Care Service Use
Consistent with the prevailing model of health services use (Andersen 1995
), enabling factors were identified as potential determinants of service use. Variables identified as enabling factors have varied across previous studies.
Availability of Formal and Informal Services
The availability of both formal and informal support was identified as having direct effects (path [d] in ). Illustrating this direct effect, participants stated:
(One participant) There are some concerns about adult day care because they have to be scheduled in some organizations that do not function seven days a week. (Another participant in same group) And it is very important to apply early because most of them are crowded and [it is difficult] to get on a waiting list. (F 6, lines 622–5, 1002–4, white)
Under those circumstances, [when family] do not have time to visit, the patient would be better off in a nursing home. So much depends on the person and the family. (F 8, lines 82–6, white)
Financial resources were also identified as enabling factors associated with use (path [d] in ), and with perceived control (path [f] in ). For instance:
Why are they at home? They are at home because they can't financially handle any other kind of situation. It isn't what services there are; it is what services you can afford that you have to think about. (F 8, lines 516–8, white)
Need as a Determinant of Long-term Care Service Use
Need was described as a central determinant of long-term care use, as suggested by both the Andersen model (Anderson 1995
) and extensive research in health services use. Both the degree and duration of disability were identified as determinants of whether and what type of long-term care one seeks. Perceived, rather than objective, need was described due to the nature of focus group data. In general, however, need includes both perceived and objective need, and disability includes both physical and cognitive disability. Focus group participants expressed a matching of needs with long-term care services used, suggesting a direct effect of need on use, shown by path (g) in .
I think the more severely disabled the person is, the greater the chance they would go into some sort of institutional setting. (F 9, lines 902–5, white)
When my mother turned 96, she lost her marbles, overnight almost. We decided she needed a nurse, 24 hours a day in her home (F 8, lines 38–41, white)
The influence of need on availability of services and support suggested that the effect of need may have an indirect effect on use, mediated by enabling factors (path [h] in ) and changing over time.
I think that for a while…my wife would probably help, but there comes a time when it becomes too much, and then perhaps I would go to a [long-term care] community of some kind. (F 9, lines 46–51, white)
If it was just a temporary thing, I might be able to depend on friends and family members, but if I started lingering, I would instruct them to call one of the home care agencies. (F 10, lines 32–6, African American)
Finally, we hypothesized that perceived need could influence attitudes toward long-term care, as shown by path (i) in . As an example, participants' perceived disability might influence one's attitudes concerning self-determination and technical expertise of various long-term care providers.
I think it is wonderful if you need it, like …if you are dying and very sick, a nursing home does help. (F 2, lines 308–11, white)
My aunt lives within a mile of a nursing center where she volunteered. But she is having a hard time seeing herself go now, as a client. (F 10, lines 572–7, African American)
Social Norms Concerning Caregiving Expectations and Burden
Second, social norms concerning caregiving expectations differed between African-American and white participants, despite some common views. In all groups, participants described not wanting to burden family members and friends for long-term support.
I really think I have an obligation not to be a burden to anybody. (F 5, lines 744–5, white)
The disadvantage [with using family or friends for long-term care] is you don't want to impose on them to come from a distance, or come daily. You feel like you're imposing upon your friends and family. And you don't want to do that. (F 10, lines 942–7, African American)
African-American participants, however, commonly expressed views that one should provide long-term care for family members. Participants described caregiving as an expectation in families and rarely discussed caregiver burdens. This finding is consistent with literature reviews (Connell and Gibson 1997
) of caregiving and race/ethnicity.
My mother, she birthed me; she raised me; she gave me a good education; she has taken good care of me, and now it is my turn to take care of her. (F 3, lines 185–8, African American)
My mother focused her mind on, “I don't want to go to a convalescent home.” She wanted her children to take care of her. And we did. (F 13, lines 868–70, African American)
In contrast, white participants did not commonly describe this caregiving expectation but rather focused on the caregiver's burden and the value of having relief or respite from caregiving burdens, by using some formal long-term care services.
I found home care a great relief for [me]. It took the load off the family's shoulders. (F 5, lines 39–41, white)
[Adult day care] takes the responsibility off the caretaker, which is a very necessary thing in many cases. The stronger spouse is relieved of those daily duties and can live his or her own life more completely. (F 7, lines 149–55, white)
Self-determination and Privacy
A final distinction between the African-American and white focus groups was reflected in concerns related to the factor of self-determination and one of its dimensions, privacy. Specifically, African Americans described concerns about losses in privacy, which were not apparent among white focus groups. When asked to describe advantages and disadvantages of various services, African-American participants described suspicions of long-term care staff, whom they referred to as strangers, and questioned the degree to which they would honor one's wishes.
With an invalid person at home, you have [home care staff] come into your house, and you are at their mercy. [Another participant] People feel intimidated because they are in your home. [First participant] The other thing that makes it difficult is divulging all your financial standings with strangers. (F 10, lines 194–6, 296–302, African American)
The [home care staff] are intruding going into private parts of the house that they shouldn't be in. There have even been instances of stealing. (F 12, l 80–3, African American)
Concerns about self-determination extended to suspicions about long-term care organizations and concerns that the family could not ensure adequate care for the elder unless they provided the care themselves or supervised the professional caregiving closely. African Americans described the responsiveness of the system (e.g., providers, insurance companies, health care organizations, and informational agencies) to their needs as poor.