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Correspondence: Address correspondence to Marie-Luise Friedemann, PhD, RN, Professor, Associate Director Graduate Program, Florida International University, School of Nursing, ACII 203, North Miami, FL 33181. E-mail: friedemm{at}fiu.edu
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Key Words: Instrument • Concept development • Dependency • Formal care • Informal care
Our purpose in this study was to increase knowledge regarding long-term-care planning behavior by investigating the validity of a series of scales intended to measure planning in three domains (financial, health–functional ability, and social–environmental) using two proposed response styles (acceptance and control). The resulting instrument (available upon request from authors), an assessment of activities that people may have undertaken in preparation for later life, can be used in research to examine how people approach planning for the time of life when formal or informal long-term care may be necessary in order to continue to live in the environment of their choice. Gerontologists and other professionals also may find the instrument useful as a diagnostic inventory that can help individuals in their middle and later years to better understand strengths and gaps in their personal approach to long-term-care planning. Educational interventions aimed at increasing awareness of and planning for eventual long-term-care needs can incorporate the instrument as a baseline measure from which to develop an individualized teaching plan for individuals who require more information about planning.
In the context of this study, researchers define long-term-care planning as actions of preparation for a future time when help with activities of daily living may be needed because of decrements in functional capacity. Based on evidence in the literature, factors that contribute to variation in such actions of preparation may include demographic and ethnic markers as well as a person's life situation and perceived access to resources.
Nonplanning
The research literature describes a relationship between nonplanning and a number of factors, including the following: (a) expectations that life will improve (Kulys & Tobin, 1980); (b) a relatively distant or nonexistent relationship with a "responsible other" (Kulys & Tobin, 1980); (c) a general belief that planning is of little or no use (Carrese et al., 2002; Kulys & Tobin, 1980; McGrew, 2000); (d) a belief that planning for bad things might actually cause them to happen (Carrese et al., 2002); (e) a preference to live "one day at a time" (Carrese et al., 2002); (f) an inability to picture oneself as vulnerable to dependency (McGrew, 2000); (g) a belief that planning is unnecessary because fate is determined by external forces (e.g., God, the community, or friends and relatives; Mathew Greenwald & Associates, Inc., 2000; McGrew, 2000; Sorensen & Pinquart, 2000b); and (h) concern that planning is valueless in the absence of appropriate financial or social resources (Sorensen & Pinquart, 2000b). Other research suggests that Americans generally underestimate their personal risk for negative eventualities and overestimate the likelihood of positive future circumstances (Bandura, 1997; Hoch, 1985; Plous, 1993; Slovic, 1987; Weinstein, 1980).
Contributing Factors
The research literature also describes the relationship between long-term-care planning and various demographic measures and personal characteristics. Although some research has found no relationship between health status or certain demographic factors and long-term-care planning (e.g., Kulys & Tobin, 1980), other studies have demonstrated strong relationships. For example, Sorensen and Pinquart found that greater activity of daily living deficits and higher age were associated with more concrete planning (2000a), and that people with more education were more likely to gather information about future care needs and options and were less likely to avoid thinking about future care (2001). Mitchell and colleagues (2000) found that African American elders were more likely than Whites to have made long-term-care plans, that African American elders with more education were more likely than others to have made long-term-care plans, and that educational attainment predicted plans for institutional care. Roberto, Weeks and Matheis-Kraft (2001) explored the impact of specific life situation markers on older adults' health care decisions and found that such decisions were affected by medical considerations, personal relationships, past experiences, quality of life, and age.
Knowledge Gaps
Most of the research to date regarding long-term-care planning has been qualitative (e.g., Carrese et al., 2002; McGrew, 2000; Sorensen & Pinquart, 2000b; Mathew Greenwald & Associates, Inc., 2000), investigated relatively small samples (e.g., Carrese et al., 2002; Kulys & Tobin, 1980; McGrew, 2000; Sorensen & Pinquart, 2000b), depicted preparation as a blended concept with two or more undifferentiated components (Sorensen & Pinquart, 2001), or investigated only one aspect of preparation at a time (Sorensen & Zarit, 1996). Much of this research has been retrospective, involving relatively older individuals who, it was expected, had already had personal experience with long-term-care services (e.g., Maloney et al., 1996), and many of the studies failed to make a clear distinction between planning in response to imminent need and planning in the absence of crisis or imminent need.
It is clear from the literature that motivation and willingness to plan for long-term care as well as the long-term-care planning process occur within a complex context of mutually influencing factors (e.g., Mathew Greenwald & Associates, Inc., 2000; McGrew, 2000; Mitchell et al., 2000; Pinquart & Sorensen, 2002). However, to our knowledge, before this study only Sorensen and Pinquart (2001) had collected quantitative data by using an instrument that attempts to incorporate this complexity.
A Planning Framework
The framework for the research and the resulting instrument was based on the work of Friedemann (1995), Kulys and Tobin (1980), and McGrew (2000), and it was developed to operationalize the dynamic context in which long-term-care planning occurs (or fails to occur). The model was explicitly positive, illustrating a desirable framework by describing actions connected with long-term-care planning. Lack of planning or nonplanning, evidenced by the absence of the identified indicators, was implicit in the model.
Friedemann's (1995) Framework of Systemic Organization (FSO), which draws on principles derived from open systems theory and social ecology, suggests that control and acceptance response styles are integral to the formation of coping strategies. Although planning and coping are not synonymous, the notion that the desired result of both is the individual's peace of mind provides support for application of this conceptual framework. The FSO entails a series of actions undertaken to resolve incongruence or disharmony within and between individuals, families, and their environment (DeMarco, Ford-Gilboe, Friedemann, McCubbin, & McCubbin, 2000). Friedemann's idea that balance between control and acceptance response styles is a key element in distinguishing ethnic or cultural orientation and understanding the dynamics of long-term-care planning is consistent with other research (e.g., Carrese et al., 2002; Maloney et al., 1996; McGrew, 2000; Pinquart & Sorensen, 2002; Sorensen & Pinquart, 2001).
The research team defined the constructs of long-term-care planning as actions of control or acceptance in three planning domains—financial, wellness and functional ability, and social or environmental—reflecting a blending of the FSO (Friedemann, 1995) with the approaches of Kulys and Tobin (1980) and McGrew (2000). Table 1 shows the deduced actions pertaining to each type of planning and response style.
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Development of the Instrument (Phase 1)
Construct and Item Development
According to Friedemann (1995), the definition of control in terms of planning is those actions necessary to modify or prevent the ill effects of changes that very likely will occur some time in the future. Thus, financial planning activities such as saving and investing money or buying insurance characterize a control response. A control response in the wellness and functional ability area encompasses a proactive regimen to stay healthy through diet, exercise, activity, and rest, and thus defers the need for assistance as long as possible. Social and environmental control in long-term-care planning includes plans for housing and for receiving needed care at a future time.
In contrast, acceptance is a response by which a person is willing to make personal changes in order to accommodate a new situation. The acceptance response is not inactivity but rather a willing use of available resources and adjustment to whatever the future may bring. Financially, acceptance includes willingness to ask for financial assistance. In terms of wellness and functional ability and social–environmental planning, the person who accepts learns to live with limitations and agrees to accept needed help from family and friends or to rely on appropriate support from community programs and resources.
On the basis of this conceptualization, we operationalized long-term-care planning as discrete, measurable activities or actions attributed to the acceptance or control response style. For example, "invest as much money as I can afford" operationalizes the control response style in the financial planning domain. Initially, we formulated 60 action or activity statements (10 items pertaining to each planning domain and response style). The stem statements "To make the best of my future ..." and "When I think about getting old ..." preceded control and acceptance items, respectively. The wording of the stem statements combined with described actions calls for agreement or disagreement, indicating both the status of the action and that the action focused on planning for a future time. The instrument uses a 4-point Likert scale to measure respondents' level of agreement with each statement.
Researchers conducted two focus groups, selected as convenience samples, to solicit feedback about the relevance of the framework and the logic and wording of the items. The groups were composed of male and female participants of varying ethnic and racial origin and socioeconomic status. Participants were older than prospective questionnaire respondents to take advantage of a temporal viewpoint in which individuals were more likely to see long-term-care planning as an urgent issue for themselves, spouses, family, and friends, and to maximize variation in this initial phase of investigation. Three middle- or upper-income White women in their 70s comprised the first group. A group of 15 persons aged 75–90 in a senior activity program located in a low-income area in Miami–Dade County, Florida, who were Hispanic (50%), Black (20%), and non-Hispanic White (30%), took part in a second discussion session. Participants in each group completed the questionnaire at the beginning of the session. During the discussion that followed, they were asked (a) if they had difficulties with any of the items and why; (b) whether the items included the kind of concerns they have in thinking about their future; and (c) what other important areas of planning were left out.
Both groups found the items relevant and there was agreement about response styles and overall areas of planning. Respondents could see themselves using actions or nonactions belonging to the different response styles. On the basis of group discussions, researchers changed the wording of several items, modified the stem statement for acceptance items, and added four questions, resulting in a 64-item questionnaire ready for testing.
Instrument Testing and Analysis (Phase 2)
Our purpose in the pilot testing was to assess the psychometric characteristics of the instrument and the efficacy of the model. Testing involved a telephone survey of 150 randomly selected persons between the ages of 55 and 70 living in Miami–Dade County, Florida. Members of this age cohort are young enough to benefit optimally from long-term-care planning and old enough to understand the potential need for such planning. The study protocol applied age as a screening criterion for inclusion in the sample and treated other measured characteristics (i.e., gender, ethnicity, race, and highest level of education) as unspecified, random variables.
The Institute for Public Opinion Research (IPOR) at Florida International University conducted telephone interviews over a period of 2 months. Researchers stratified the sampling frame by areas within Miami–Dade County known historically to have differing response rates so that the relative number of interviews coming from high refusal areas were proportional to 2000 U.S. Census ratios. Approximately 25% of people contacted agreed to take the survey. Interviewers, who advised respondents that their answers would be confidential and that they could terminate the survey at any time, obtained verbal consent to participate. Participants' willingness to complete the interview implied informed consent.
The interviewers used a computerized system, known as CATI, for dialing potential respondents and for recording responses. The interactive format of the CATI system ensured accuracy in recording responses by allowing progress through the interview only if each previous response fell within preestablished parameters. The interviewers read the items directly from the correct language version of the instrument after determining which language the respondent preferred.
Translation and Interviewer Training
Translators used the method suggested by Brislin (1980) to ensure linguistic comparability of the English and Spanish versions of the instrument. An expert fluent in Spanish and familiar with the most common dialects translated the questionnaire from English to Spanish. Another bilingual person then backtranslated the Spanish version into English. Translators compared the original and the backtranslated versions, accepting identical items. When the two versions were not identical, a Hispanic expert in instrument construction who was fluent in both English and Spanish examined the items and arrived at a judgment for an acceptable translation.
The IPOR staff and researchers for this study systematically trained the interviewers, question by question, including needed follow-through with checks and quality control measures. The training placed special emphasis on cultural sensitivity, tact, establishment of rapport and trust, clarity of communication, and patience with older respondents. Interviewers learned how to minimize bias, deal with problem situations, and handle difficult respondents, as well as how to ensure the rights of participants and their informed consent. Detailed feedback from the interviewers revealed no problems with language flow or rapport with participants following three test-run interviews. Researchers made a few minor wording modifications in both versions of the survey in order to optimize clarity.
Analysis
In our initial analysis we used a principal axis factoring (PAF) procedure with oblique rotation to evaluate the instrument's factor structure, and then we used Cronbach's alpha to test for the internal consistency of items with each factor. We eliminated items within the instrument if the factor loading was below.50 and if they cross-loaded on several factors with loadings greater than.45. The trimmed instrument then underwent a confirmatory factor analysis using AMOS 4.0 (Arbuckle & Wolthke, 1999) and the criteria for confirming a factor structure recommended by Byrne (2001) and by Hu and Bentler (1998).
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Factors confirmed in the analysis clearly corresponded to the types of planning anticipated, that is, financial (saving and investing money), wellness and functional ability (taking care of health), and social and environmental (thinking and planning ahead with regard to living arrangements and engagement of people in long-term-care planning) as previously described. The analysis also supported the proposed response styles—acceptance and control—as derived from Friedemann (1995). Analyses confirmed the control construct, in the form of structured proactive activities that have the aim of minimizing risk or deterioration of quality of life with the loss of functional ability, for 16 items in three factors.
Exploratory Factor Analysis
After a series of exploratory PAF analyses and item trimming, researchers retained 23 items. These items pertained to five factors with eigenvalues greater than 1.0 and explained 52% of the variance. Table 2 shows factor loadings for the 23 retained items.
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Factors 2 and 5 demonstrated that, in contrast to control, acceptance items formed an overarching concept, expressed in both positive and negative terms, which encompassed all three types of planning. Five items expressed willingness to accept help (Factor 2), and two items yielded negative responses reflecting a lack of acceptance or unwillingness to ask for or accept help in the financial and wellness and functional ability domains (Factor 5).
Descriptive Results
Table 3 shows survey results by the proportion responding to individual items. The highest levels of strong agreement and corresponding low levels of strong disagreement occur within Factor 1 (thinking and planning ahead), whereas the lowest levels of strong agreement and corresponding high levels of strong disagreement occur within Factor 2 (accepting help if needed). Additionally, in Factor 4 (saving and investing money) there are two items with relatively high levels of "does not apply" and relatively high levels of disagreement (compared with other factors), which may reflect a segment of the sample with fewer financial resources.
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The last column on the right in Table 1 summarizes implications for the proposed model based on the factor analysis. Scales of four to seven items well represented control in all three types of planning. It is notable that the two acceptance factors seemed to combine the three planning domains, expressing (a) perceived available help from a social network in the financial, functional, and social areas and willingness to use such help, and (b) unwillingness to use help from a social network.
Score Distributions
Factor correlations were low to moderate with a range of.04 to.39. Table 5 presents measures of central tendency and distribution of the five factors for the entire sample as well as for ethnic, racial, and gender subpopulations. Scores were evenly distributed across the range in all subsamples with the exception of non-White respondents, whose scores were more likely to be on the high agreement end of the scale, meaning they reported more thinking about where and how they would live in the future than other subgroups. Factors 2, 3, and 4 had a slight skew to the positive end of the scale as well, meaning more respondents reported agreement with the planning items. Of the three factors, the skew of Factor 3 (taking care of one's health) was most pronounced. Of the respondents, 60% scored maximum agreement on all five items and 80% fell in the upper one third of the possible score range. Subgroups scoring the highest were women and non-Whites.
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=.58).
Differences in Subsamples
Researchers used an analysis of variance and t tests to examine differences in scores on the five scales across ethnic, racial, and gender groups. There were no differences between male and female respondent results. The two scales in which subsamples differed significantly were Factor 1 (thinking–planning ahead) and Factor 2 (accepting help if needed). Non-Whites were more likely to have planned future living arrangements than Whites, including Hispanic Whites: t = 2.95(149), p <.01. Hispanics reported significantly higher agreement with items expressing the use of help from family and friends than non-Hispanics: t = 1.99(149), p =.05.
Modification of the Model
Results regarding the acceptance response style suggest that acceptance may not function as originally conceptualized; instead it may be a necessary precursor to control. Actual long-term-care planning activity seems to be composed of control actions only when acceptance signifies an attitude that facilitates control-related planning behaviors. If acceptance translates into behaviors, these actions generalize across all three types of planning. For example, "accepting help" could refer to help with financial, social and environmental, or health matters, or "being flexible to make changes" could refer to proactive financial management, learning to adapt to assistive devices (wellness and functional ability), or learning to live with fewer resources (social and environmental). Likewise, the absence of actual long-term-care planning activity seems to result when respondents offer a negative response to a positive statement. Therefore, "finding it hard to accept money" or "difficult to ask for help with chores," may translate into the absence of control-related planning behavior.
Table 6 shows the model with this conceptual adjustment. Thinking and planning ahead (Factor 1), taking care of health (Factor 3), and saving and investing money (Factor 4) represent the original social and environmental, wellness and functional ability, and financial planning domains, respectively, but associate only with the control response style. The accepting help if needed (Factor 2) and nonacceptance of help (Factor 5) constructs depict the acceptance response style, aggregating the three planning areas. Four of the five factors in the revised model are explicitly positive. Unreadiness to seek or accept help, however, may be needed as an additional concept in the model, a finding that is well supported in the literature (e.g., Kulys & Tobin, 1980). Future research must focus on gaining a better understanding of how to interpret nonacceptance.
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Reliability and Validity
The reliability of the total scale and its subscales for the LTCP instrument was generally favorable, with Cronbach's alpha coefficients ranging from =.71 to =.88. Reliability of gender and ethnic group coefficients, computed separately, remained stable across most subscales. Some caution has to be expressed about the reliability of the Accepting Help If Needed scale for Hispanics, which, with a coefficient of.58, was lower than that of all other ethnic groups.
The random sampling procedures used and the strict quality control of data demonstrate an acceptable level of internal validity. The 3:1 refusal rate, which is not uncommon in Miami–Dade County, indicates a possible selection bias. Anticipating this problem, IPOR designed the sampling frame to minimize this effect by oversampling in low-response areas. The demographics of the interview sample and educational attainment data (used as an approximation of socioeconomic status) indicated reasonable variation by ethnicity, race, gender, and level of education completed (see specific data under the Instrument Testing and Analysis section).
External validity did not pose significant problems. Differences between ethnic groups were minor and limited to two subscales: (a) Hispanics were more likely to agree that family and friends were available to help, and they were more likely to be willing to use family or friends as helpers when in need than did other ethnic groups; and (b) non-Whites were more likely to have engaged in the planning of future living arrangements than Whites. These differences may be related to a reluctance of minorities to use formal programs and resources (American Association of Retired Persons, 1998), possibly combined with lower socioeconomic status that may deter access to such services, resulting in the need for greater dependency on family or friends. The urgency to share one's worries about long-term-care needs in the future also may be a cultural phenomenon related to family closeness and a general presumption that informal care can be counted on when the need arises (e.g., Clark & Huttlinger, 1998). Nevertheless, these differences did not affect the quality of the instrument in general.
Age and the presence of chronic ailments are other factors potentially influencing generalizability or external validity. This small study did not assess age beyond the determination of the inclusion age range of 55 to 70 years, and we did not question respondents about their health status. Future studies should examine age groups to identify differences in readiness to do planning and to examine the type of planning favored at a particular time in respondents' life cycles. Analyses of future studies should control for chronic conditions as a potential moderator variable.
Content and Construct Validity
As described earlier, researchers derived two response styles (acceptance and control) and three planning domains (financial, wellness and functional ability, and social and environmental) from the work of Friedemann (1995) and McGrew (2000), respectively. The research team obtained feedback from persons directly involved in the long-term-care process to test the proposed response styles and planning areas for content validity. In group discussions, participants aged 75 to 90 retrospectively examined whether planning would have made a difference in past and current circumstances, and what types of planning were necessary in their situation. As described earlier, 18 people in two focus groups found that the proposed theoretical framework corresponded to their experiences and concerns, and then proceeded with a critique of each item.
Construct validity was tested psychometrically after the item content and item congruence with the theoretical framework were found satisfactory by focus group participants. Because this study was the first test of the theoretical framework in the context of long-term-care planning, researchers applied initial exploratory factor analysis procedures to arrive at definitions of the constructs. The analyses demonstrated the instrument's construct validity by showing that all of the items have strong parameter estimates (factor loadings >.45) when grouped on their intended factor, and that the factors were meaningful and were confirmed to correspond to the theoretical model with very strong fit indices (comparative fit index =.98 and root mean square error of approximation =.050).
Theoretical Basis
The researchers plan to test the revised model with a larger sample in future research. Future research also will incorporate additional moderator variables, such as age, presence of chronic ailments of respondents, and perceived availability of community, informal, and financial resources that were not included in the initial study. This design will more completely account for the complex context of mutually influencing factors suggested by McGrew (2000), Mitchell and colleagues (2000), Pinquart and Sorensen (2002), Mathew Greenwald & Associates, Inc. (2000), and others. The instrument will require repeated psychometric testing with confirmatory factor analysis. Researchers can address the instrument's imprecision in distinguishing between a respondent's willingness to undertake given actions versus his or her ability to do so by including perceived availability of resources in the model. In addition, it is important to explore further the idea that acceptance may reflect an attitude rather than a response style and may, in fact, be a necessary condition for planning behavior to occur. Finally, because reluctance to accept help implies resistance to feeling or becoming dependent—possibly indicating an underlying fear of dependency, denial of the possibility that one may become dependent, or some other underlying influence—future research also must focus on gaining a better understanding of how to interpret nonacceptance.
Nevertheless, the present study has provided insight into a greatly underexplored but significant area. Practitioners will realize that planning for long-term care asks for control-related behaviors that are structured and strategic. In addition, in order to undertake effective planning, people need to assume an accepting attitude that allows them to foresee future difficulties without excessive fear, creating the insight and urgency necessary to take action. Practitioners will be able to use LTCP-instrument results as an indicator of the extent of a person's acceptance or denial of potential future dependency. It seems that certain types of people tend to deny what they believe is an unpleasant possibility. Therefore, educators and practitioners will be challenged to use targeted intervention approaches that channel people's thinking toward recognizing the importance of planning in the context of accepting the possibility of a future in which they may be dependent on others to carry out routine daily activities. The LTCP instrument is a useful and flexible tool for measuring planning at baseline, for monitoring changes in planning behaviors, and for providing constructive feedback to persons who are learning to modify long-term-care planning attitudes and behaviors.
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1 School of Nursing, Florida International University, North Miami.
2 Health Services Administration, Florida International University–University Park Campus, Miami.
3 The Center on Aging, Florida International University, North Miami.
Decision Editor: Linda S. Noelker, PhD
Received for publication December 31, 2002. Accepted for publication July 28, 2003.
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