Abstract
Preferences are the expression of individuals’ basic psychosocial needs and are related to care outcomes. This study tested the consistency of people’s everyday preferences over one week, comparing responses of nursing home residents (n = 37; mean age 82) and university students (n = 50; average age 20). Participants completed the Preferences for Everyday Living Inventory at baseline and 5–7 days later. Preference consistency was calculated three ways. First, we calculated correlations (range = .11–.90), then the overall percent of exact agreement (e.g., response was “very important” at both time points), which was 66.1%. Lastly, we collapsed responses to “important” or “not important” and found an increase in percent agreement (86.6%). Personal care preferences were more stable, while leisure activities were less stable. The groups did not have significant differences in consistency. Some preferences are more consistent than others; age and frailty alone do not appear related to preference instability.
Keywords: person-centered care, preferences, nursing home residents, measurement, assessment
Health care reform legislation of the Affordable Care Act has called for a focus on the “Triple Aim” in care—improved health, reduced costs, and improved patient experience—while the Centers for Medicare and Medicaid Services (CMS) has released guidelines that mandate nursing homes to assess and monitor the delivery of high quality, patient-centered care (CMS F tag-309; Mollot & Butler, 2012). As a result, recent efforts in the field of gerontology have focused on understanding how to assess and deliver person-centered care that recognizes the individual as the center of care processes.
Person-centered care is a process that empowers elders to maximize their potential for retaining relationships, capabilities, interests, and skills developed over the course of a lifetime (Edvardsson, Varrailhon, & Edvardsson, 2014). A primary tenet of person-centered care is understanding an individual’s values and preferences for daily care routines and activities. Knowing an individual’s everyday preferences can inform care goals, care planning, and ultimately allow for a match, or congruence, between an individual’s wishes and care (i.e., including an individual in a specific activity that she/he prefers; Cvengros, 2009; Jahng, Martin, Golin, & DiMatteo, 2005; Van Haitsma, Crespy, Humes, Elliot, Mihelic, Scott, et al., in press). The integration of knowledge about individuals’ preferences into care is in turn, related to improved care outcomes (Applebaum, Straker, & Geron, 2000; Gerdner, 2000; Lawton, Van Haitsma, Klapper, Kleban, Katz, & Corn, 1998; Simmons & Schnelle, 2004; Thompson & Smith, 1998; Whitlatch, Judge, Zarit, & Femia, 2006). However, there remains a significant gap in understanding how frequently one must assess a person’s preferences in care and the consistency in reports over time. To maximize the delivery of person-centered, preference-congruent care, it is vital to understand how consistent people are in how they rate the importance of everyday preferences. If preferences change within short periods of time, strategies are needed to assess preferences more frequently; if residents report consistent preferences, less frequent assessments may be appropriate.
Recent evidence indicates that older adults, including those with mild to moderate dementia, can consistently report on state dependent questions, preferences, choices, quality of life, and involvement in care over short test-retest periods of time (Carpenter, Kissel, & Lee, 2007; Clark, Tucke, & Whitlatch, 2008; Feinberg & Whitlatch, 2001; Thorgrimsen, Selwood, Spector, Royan, de Madariaga Lopez, Woods, & Orrell, 2003; Whitlatch, Feinberg, & Tucke, 2005a; 2005b). However, limited research has extensively examined the consistency of how people rate the importance of everyday preferences, such as personal care preferences related to bathing or eating as well as recreational preferences (Housen, Shannon, Simon, Edelen, Cadogan, Jones, et al., 2009). Cohen-Mansfield & Jensen (2007) found that a small group of cognitively capable community dwelling older adults were able to rate their self-care preferences reliably within a one to two week interval. The authors found that exact reliability was 73%, while close/partial reliability (agreement within one unit) increased to 93%.
Self-Determination Theory maintains that all individuals possess the innate psychosocial needs of autonomy, relatedness, and competence in order to maximize well-being (Deci & Ryan, 2000). These needs can fluctuate in importance based upon a person’s circumstances, environment, or past experiences, such that when one need is threatened, its satisfaction is highly sought after. Preferences are a major way individuals can meet their changing needs. reflection of these dynamic needs. As a result it is likely that some preferences may also fluctuate based on circumstantial characteristics. Recent qualitative evidence details within-person, environmental, and interpersonal reasons for why a preference could change in importance (Heid, Eshraghi, Duntzee, Abbott, Curyto, & Van Haitsma , in press). Furthermore, theory and research document that preferences can change over longer periods of time, particularly as one approaches death or experiences health concerns (Winter & Parker, 2007), when conceptualizing end-of-life decisions (Ditto, Smucker, Danks, Jacobson, Houts, & Fagerlin, 2003), or in long-term care (Wolff, Kasper, & Shore, 2008). As a result, some everyday preferences may change more rapidly than others.
Furthermore, a bias in society presupposes that overall physical and cognitive frailty contributes to the instability in measures of daily preferences. Thus, this project sought to directly explore this assumption by utilizing a comparative sample of traditional college age individuals as well as frail older adults residing in nursing homes. The purpose of this study is to determine one-week consistency of responses on the Preferences for Everyday Living Inventory (PELI; Van Haitsma, Curyto, Spector, Towsley, Kleban, Carpenter, et al., 2012) within a population of older adults living in a community nursing home and a sample of university students to determine the amount of change in the importance of preferences rated from one week to the next in either population. In addition, this study explores whether particular preference categories are more consistent from one point in time to the next as compared to other preferences.
Methods
Participants
Eighty-seven participants were consented to participate from two samples. Sample 1 included 37 residents from a community nursing home (aged 55 to 101; M(SD) = 81.6(11.8)). Sample 2 included 50 university students (aged 18 to 22; M(SD) = 19.8(1.0)). (See Table 1 for participant demographic characteristics).
Table 1.
Participant Demographics
| Variable | University (N = 50) | NH (N = 37) | Test of Sig. Difference | |||||
|---|---|---|---|---|---|---|---|---|
|
| ||||||||
| M(SD) | % (n) | M(SD) | % (n) | t | p | χ2 | p | |
|
| ||||||||
| Age (years) | 19.8 (1.0) | -- | 81.6 (11.8) | -- | 36.8 | .00 | -- | -- |
|
| ||||||||
| Gender (Male) | -- | 34.0 (17) | -- | 32.4 (12) | -- | -- | 47.2 | .00 |
|
| ||||||||
| Education (% completed high school) | -- | 100.0 (50) | -- | 89.1 (33) | -- | -- | 5.7 | .02 |
|
| ||||||||
| Ethnicity | -- | -- | -- | -- | -- | -- | ||
| Not Hispanic or Latino | 98.0 (49) | 100.0(37) | ||||||
| Hispanic or Latino | 2.0 (1) | -- | ||||||
|
| ||||||||
| Race | -- | -- | -- | -- | 12.0 | .01 | ||
| Caucasian | 68.0 (34) | 97.3 (36) | ||||||
| African American | 12.0 (6) | 2.7 (1) | ||||||
| Asian | 18.0 (9) | -- | ||||||
| Other | 2.0 (1) | -- | ||||||
|
| ||||||||
| Marital Status | -- | -- | -- | -- | 68.4 | .00 | ||
| Married | -- | 5.4 (2) | ||||||
| Divorced/Separated | -- | 10.8 (4) | ||||||
| Widowed | -- | 70.3 (26) | ||||||
| Never Married | 100.0 (50) | 13.5 (5) | ||||||
|
| ||||||||
| Religion | -- | -- | -- | -- | 42.3 | .00 | ||
| Protestant | 22.0 (11) | 2.7 (1) | ||||||
| Catholic | 14.0 (7) | 5.4 (2) | ||||||
| Jewish | 18.0 (9) | 86.5 (32) | ||||||
| Eastern Orthodox | 0 | 0 | ||||||
| Muslim | 0 | 0 | ||||||
| Other | 10.0 (6) | 5.4 (2) | ||||||
| None | 36.0 (7) | 0 | ||||||
Measures
Demographics
Participants self-reported on age, gender, education, ethnicity, race, marital status, and religion for descriptive purposes (see Table 1).
Preference Interview
The Preferences for Everyday Living Inventory (PELI; Van Haitsma et al., 2012) was used to ask participants about their preferences. Questions cover a variety of everyday topics from food and dining to personal care preferences that fall into five domains: social contact, leisure and growth activities, diversionary activities, self-dominion, and enlisting others in care. An 85-item version of the PELI was administered to the full sample, but due to ongoing work revising the tool through cognitive interviewing, we dropped 19 items from this report because they are no longer a part of the evolved PELI tool. Reasons items were dropped during the iterative tool development included concerns such as unclear wording or double-barreled items. As a result, 66 items were examined in this study (See Table 2 for list of items). The PELI asks respondents to rate these items on “How important is it to you to…[insert preference]” with a 4-point Likert scale from 1 (“very important”) to 4 (“not important at all”).
Table 2.
Percent Agreement between Time 1 and Time 2 PELI Items for Nursing Home Residents and University Students
| How important is it to you to… | Pearson Correlations | Fishers Difference among r | % Exact Agreement | Test of Proportions | % Agreement of Important or Not Important | Test of Proportions | |||
|---|---|---|---|---|---|---|---|---|---|
| Univ | NH | Z(df) | Univ | NH | z | Univ | NH | z | |
| Self Dominion | |||||||||
| Choose when to get up in the morning? | .45 | .36 | 61.7 | 50.0 | 87.5 | 80.6 | |||
| Follow a routine when you wake up in the morning? | .60 | .54 | 54.0 | 48.6 | 72.0 | 73.0 | |||
| Take care of your personal belongings or things? | .42 | .72 | −2.04 (81)* | 72.0 | 83.8 | 92.0 | 100.0 | ||
| Choose between a tub bath, shower, bed bath, or sponge bath? | .69 | .65 | 48.9 | 73.0 | −2.1* | 87.2 | 97.3 | ||
| Choose how often to bathe? | .64 | .49 | 69.4 | 73.0 | 95.9 | 100.0 | |||
| Choose what time of day to bathe? | .74 | .11 | 3.70 (79)* | 68.8 | 40.5 | 2.6** | 79.2 | 78.4 | |
| Choose what clothes to wear? | .68 | .63 | 70.0 | 62.2 | 92.0 | 89.2 | |||
| Take a nap when you wish? | .56 | .61 | 55.6 | 37.8 | 80.9 | 67.6 | |||
| Choose what to eat? | .48 | .31 | 71.4 | 58.3 | 91.8 | 88.9 | |||
| Choose when to eat? | .69 | .50 | 61.2 | 40.0 | 81.6 | 77.1 | |||
| Choose where to eat? | .65 | .30 | 2.04 (79)* | 67.3 | 50.0 | 81.6 | 69.4 | ||
| Choose your own bedtime? | .29 | .38 | 51.1 | 73.0 | 87.5 | 91.9 | −3.8*** | ||
| Follow a routine when you go to bed? | .49 | .48 | 39.6 | 54.1 | 70.8 | 83.8 | |||
| Choose how to care for your mouth? | .60 | .68 | 57.1 | 91.9 | 93.9 | 100.0 | |||
| Choose how often to care for your nails? | .82 | .58 | 2.17 (79)* | 71.4 | 63.9 | 87.8 | 91.7 | ||
| Be able to use the phone in private? | .49 | .62 | 66.0 | 56.8 | 92.0 | 86.5 | |||
| Lock things up to keep them safe? | .74 | .70 | 63.3 | 73.0 | 63.3 | 83.8 | |||
| Have privacy? | .28 | .86 | −4.47 (81)* | 68.0 | 83.8 | 92.0 | 91.9 | ||
| Keep your room at a certain temperature? | .63 | .64 | 72.9 | 63.9 | 91.8 | 86.1 | |||
| Keep the lighting in your room at a certain level? | .44 | .46 | 55.3 | 56.8 | 72.9 | 83.8 | |||
| Set up your room the way you want? | .59 | .39 | 64.6 | 73.0 | 85.4 | 94.6 | |||
| Set up your bed for comfort? | .69 | .76 | 73.5 | 83.8 | 95.9 | 100.0 | |||
| Do certain things to feel better when you are upset? | .46 | .44 | 66.0 | 66.7 | 88.0 | 91.7 | |||
| Go outside to get fresh air when the weather is good? | .68 | .84 | 73.5 | 83.8 | 91.8 | 94.6 | |||
| Leisure & Diversionary Activities | |||||||||
| Have snacks available between meals? | .72 | .62 | 54.2 | 51.4 | 72.9 | 78.4 | |||
| Drink alcohol on occasion? | .82 | .69 | 70.0 | 64.9 | 84.0 | 97.3 | −2.0* | ||
| Watch TV? | .80 | .66 | 68.0 | 70.3 | 80.0 | 94.6 | |||
| Watch movies with other people? | .59 | .81 | −2.00 (81)* | 58.0 | 70.3 | 84.0 | 86.5 | ||
| Eat at restaurants? | .69 | .76 | 75.5 | 66.7 | 83.7 | 82.4 | |||
| Be involved in cooking? | .80 | .61 | 69.4 | 63.9 | 82.0 | 72.2 | |||
| Use tobacco products? | .71 | .90 | −2.59 (80)* | 87.8 | 97.3 | 98.0 | 97.3 | ||
| Do outdoor tasks? | .59 | .58 | 38.0 | 55.6 | 70.0 | 88.9 | |||
| Order take-out food? | .65 | .64 | 56.0 | 60.0 | 53.1 | 66.7 | |||
| Do things away from here? | .40 | .60 | 59.2 | 42.9 | 80.0 | 88.6 | |||
| Enlisting Others in Care | |||||||||
| Choose the gender of your caregiver? | .75 | .82 | 62.8 | 69.4 | 84.1 | 80.6 | |||
| Have staff show they care about you? | .79 | .66 | 67.4 | 83.8 | 83.0 | 97.3 | −2.1* | ||
| Have staff show you respect? | .72 | .47 | 68.1 | 83.8 | 85.4 | 97.3 | |||
| Be involved in discussions about your care? | .69 | .16 | 3.04 (80)* | 67.3 | 81.1 | 87.8 | 94.6 | ||
| Have family or close friends involved in discussions about your care? | .66 | .83 | 63.3 | 83.3 | 89.8 | 94.6 | |||
| Talk to a professional if you are sad or worried? | .72 | .43 | 59.2 | 62.2 | 79.6 | 78.4 | |||
| Social Contact | |||||||||
| Have regular contact with family and friends? | .73 | .89 | −2.17 (80)* | 86.0 | 86.1 | 96.0 | 97.3 | ||
| Participate in religious services or practices? | .81 | .79 | 71.4 | 67.6 | 90.0 | 81.1 | |||
| Do things with groups of people? | .47 | .74 | 62.0 | 70.3 | 92.0 | 83.8 | |||
| Meet new people? | .61 | .75 | 70.0 | 64.9 | 84.0 | 89.2 | |||
| Spend time one-on-one with someone? | .54 | .33 | 76.0 | 67.6 | 94.0 | 94.6 | |||
| Spend time by yourself? | .65 | .59 | 76.0 | 56.8 | 90.0 | 89.2 | |||
| Be involved in choosing your roommate? | .64 | .80 | 77.6 | 66.7 | 94.0 | 96.9 | |||
| Volunteer your time? | .84 | .67 | 75.0 | 59.5 | 93.9 | 89.2 | 2.7** | ||
| Reminisce about the past? | .70 | .67 | 66.0 | 64.9 | 88.0 | 81.1 | |||
| Be a member of a club? | .54 | .74 | 54.0 | 55.6 | 80.0 | 83.3 | |||
| Give gifts? | .65 | .66 | 67.3 | 69.4 | 87.8 | 91.7 | |||
| Be around children? | .83 | .64 | 63.3 | 62.2 | 84.0 | 81.1 | |||
| Growth Activities | |||||||||
| Have books, magazines, and newspapers to read? | .60 | .32 | 58.0 | 56.8 | 80.0 | 78.4 | |||
| Listen to music you like? | .51 | .35 | 68.0 | 62.2 | 98.0 | 83.8 | 2.4* | ||
| Be around animals such as pets? | .82 | .88 | 65.2 | 67.6 | 81.3 | 91.9 | |||
| Keep up with the news? | .81 | .84 | 76.0 | 86.5 | 88.0 | 97.3 | |||
| Attend activities such as concerts or plays? | .67 | .31 | 57.1 | 48.6 | 80.0 | 78.4 | |||
| Participate in your ethnic traditions? | .77 | .81 | 73.5 | 63.9 | 86.0 | 89.2 | |||
| Do gardening activities? | .77 | .65 | 72.3 | 56.8 | 100.0 | 83.8 | 2.9** | ||
| Use the computer? | .48 | .86 | −3.42 (81)* | 72.0 | 73.0 | 100.0 | 89.2 | 2.4* | |
| Go shopping? | .76 | .87 | 68.0 | 75.0 | 80.0 | 91.7 | |||
| Do your favorite hobbies? | .51 | .73 | 77.6 | 63.9 | 98.0 | 83.3 | 2.4* | ||
| Are sports to you? | .87 | .87 | 70.0 | 72.2 | 86.0 | 88.9 | |||
| Exercise? | .74 | .65 | 72.0 | 54.1 | 92.0 | 81.1 | |||
| Play games? | .63 | .71 | 56.0 | 61.1 | 74.0 | 72.2 | |||
| Do your favorite activities? | .68 | .46 | 91.8 | 70.3 | 2.6** | 98.0 | 94.6 | ||
| Total Mean | .64 | .62 | 66.2 | 65.9 | 85.9 | 87.3 | |||
Note. N = 37 Nursing Home Residents, N = 50 University Students.
p < .05,
p <.01,
p < .001.
Proportion tests for exact agreement and for Important vs. Not Important for University and Nursing Home samples.
Procedures
Eligibility and recruitment procedures differed by group. The university sample (n = 50) consisted of undergraduate students recruited from a psychology department research subject pool. Students received credit for completing Time 1 and Time 2 questionnaires. Participants came to the research laboratory for an initial session at which they completed a paper-and-pencil survey of demographic questions and the PELI. At the conclusion of this session, participants were scheduled for a follow-up session one week later. Only one participant did not return for follow up. Respondents completed their retest an average of 7.1 days later (SD = 0.3, range = 7–8).
Nursing home participants were recruited from two nursing homes in the suburbs of a major metropolitan area. Social workers from each nursing home identified residents who were cognitively capable, English speaking, and had a length of stay of at least one week. Once these residents were identified, the attending physician verified that the elders had the capacity to consent for themselves and were medically stable. Attending physicians approved 74 of the 86 residents identified by social services. After physician approval was obtained, social workers approached residents to gain their assent to be contacted by the research team and informed the residents’ responsible party about the study. Informed consent was obtained using interactive questioning during the consenting process. If, at any time during the consenting process, the research assistant felt the resident was unable to give consent, the process was stopped and the resident was not included in this phase of study. After a resident consented, the research assistant administered the Mini-Mental State Examination (MMSE; Folstein, Folstein, & McHugh, 1975) to confirm that the elder was cognitively capable (MMSE score ≥22). Consenting residents who met study criteria completed a baseline interview (T1) consisting of the 66-item PELI. One week (5–7 days) after completing the baseline (T1) interview, residents were re-interviewed with the PELI (T2). The final sample consisted of 37 participants.
Analyses
Consistency was calculated three ways. We began by running Pearson correlations between the T1 and T2 preference importance ratings and then tested for significant differences between the two samples using the Fisher’s z test. We then calculated the percent “Exact Agreement” between T1 and T2 for each sample. Exact agreement meant that the respondent reported the exact same level of importance at each time period. For example, the resident said choosing what time to bathe was “very important” at T1 and “very important” at T2. A z-test of proportions was used to examine significant differences between the groups. Finally, because the ultimate disposition to use this tool will be its use in tailoring care to frail older adults, we examined consistency through a more clinical lens. We sought to determine overall consistency from the perspective of whether a respondent reported a preference as either “Very” or “Somewhat” important in contrast to reporting a preference as “Not very” or “Not at all” important. From a measurement perspective, those individuals who only changed one point over the one week -- going from a “1” (very) to a “2” (somewhat) or vice versa (“2” to “1”) in rating preference importance -- were considered consistent. These individuals reported that a preference was “important”, but simply shifted slightly in level of that importance. The same was true in regard to reports of “not very” or “not at all” important. These individuals were consistent in reporting that a preference was “not important”, but simply shifted in degree of unimportance.
Results
Descriptive tests of demographic characteristics (see Table 1) demonstrate that the nursing home sample is significantly older (t = 36.8 p < .001), more female (χ2 = 47.2, p < .001), less educated (χ2 = 5.7, p = .02), has more Caucasians (χ2 = 12.0, p = 01), less likely to be never married (χ2 = 68.4, p < .001), and more likely to ascribe to the Jewish faith (χ2 = 42.3, p <.001) when compared to the university students.
Differences in Average Importance Ratings between Samples
Overall, the two samples differed in terms of their overall importance ratings for various preferences (see Table 2). In the majority of instances, older adults rated their preferences as being more important than the younger university sample. This is not surprising given that the portfolio of preferences was developed specifically with an older adult population in mind. The only exceptions to this were on items that could be considered more cohort specific to university students, i.e., “drinking alcohol on occasion”, “doing things with groups of people”, “using the computer,” and “watching movies with other people”.
Overall test-retest consistency between groups
Central to the question posed in this study, e.g., whether or not frail older adults were less consistent than the younger sample, no differences were found between the groups in stability of reporting preferences over one week. This finding held across the three ways consistency was examined (Pearson correlation, % exact agreement, and % agreement that the preference was important or not important). Frail older adults were no more or less likely to be consistent in reporting their preferences compared to young adults.
When examining the correlations between T1 and T2 preference responses, only 10 out of 66 (15%) of the preference items showed differences between nursing home residents (n = 4 inconsistent items) and university students (n = 6 inconsistent items). For nursing home residents, the type of inconsistent responses all centered around personal care (e.g., choosing time of bathing, where to eat, caring for one’s nails, and choosing who should be involved in discussions about care). For university students, the type of inconsistent responses were more varied, ranging from caring for personal belongings, tobacco use, privacy, to regular contact with family.
Percent exact agreement demonstrated a similar level of overall consistency between the groups. University students were perfectly consistent 66.2% of the time, while nursing home residents had an exact consistency percentage of 65.9%. Using this measure of consistency, only 3 of the 66 preference items (4.5%) emerged as significantly different between the two groups. University students were more inconsistent in choosing method of bathing, whereas nursing home residents were more likely to change their responses about time of day to bathe and doing their favorite activity.
Percent agreement regarding whether a preference remained important vs. not important demonstrated a significantly higher level of consistency overall. University students remained consistent 85.9% of the time, whereas nursing home residents remained consistent 87.3% of the time. Using this measure of consistency, eight of the 66 preference items (12.1%) emerged as significantly different between the groups. Again the pattern of inconsistency was split among the groups. University students were less consistent in the importance of “choosing your own bedtime”, “having staff show they care about you” and “drinking alcohol upon occasion”. Nursing home residents showed more inconsistency when reporting preferences for “listening to music you like”, “volunteering your time”, “doing gardening activities”, “using the computer”, and “doing your favorite hobbies”.
Finally, focusing only on preferences of the nursing home residents, we examined the overall consistency of specific types of preferences over a one-week period. Table 3 presents preferences ordered from most consistent to least consistent as reported by nursing home residents over a one week period. We found that 26 of 66 (39.4%) items were over 90% consistently reported, 28 of 66 (42.4%) were over 80% consistently reported, and only 12 of 66 (18.2%) were less than 79% consistently reported. In general, Enlisting others in Care preferences (4 out of 6: 67%%) were most highly proportionally represented in the most consistent preferences (more than 90%), followed by Self Dominion preferences (11 out of 24: 46%%), Social Contact preferences (4 out of 12: 33%), Leisure and Diversionary Activities (3 out of 10: 30%), and Growth Activities (4 out of 14: 29%).
Table 3.
Ranking of Percent Agreement that a Preference Remains Important or Not Important Between Time 1 and Time 2 Nursing Home Residents
| Category of Preference | Preference Items | % Agreement Imp/Not Imp |
|---|---|---|
| SD | * Take care of your personal belongings or things? | 100 |
| SD | Choose how often to bathe? | 100 |
| SD | Choose how to care for your mouth? | 100 |
| SD | Set up your bed for comfort? | 100 |
| SD | * Choose between a tub bath, shower, bed bath, or sponge bath? | 97.3 |
| EC | Have staff show they care about you? | 97.3 |
| EC | Have staff show you respect? | 97.3 |
| LD | Drink alcohol on occasion? | 97.3 |
| LD | Use tobacco products? | 97.3 |
| SC | Have regular contact with family and friends? | 97.3 |
| GA | * Keep up with the news? | 97.3 |
| SC | Be involved in choosing your roommate? | 96.9 |
| SD | Set up your room the way you want? | 94.6 |
| EC | Be involved in discussions about your care? | 94.6 |
| EC | * Have family or close friends involved in discussions about your care? | 94.6 |
| SC | Spend time one-on-one with someone? | 94.6 |
| SD | * Go outside to get fresh air when the weather is good? | 94.6 |
| LD | Watch TV? | 94.6 |
| GA | * Do your favorite activities? | 94.6 |
| SD | * Choose your own bedtime? | 91.9 |
| SD | Have privacy? | 91.9 |
| GA | * Be around animals such as pets? | 91.9 |
| SD | Choose how often to care for your nails? | 91.7 |
| SD | Do certain things to feel better when you are upset? | 91.7 |
| GA | Go shopping? | 91.7 |
| SC | Give gifts? | 91.7 |
| SD | * Choose what clothes to wear? | 89.2 |
| SC | Meet new people? | 89.2 |
| SC | Spend time by yourself? | 89.2 |
| SC | Volunteer your time? | 89.2 |
| GA | Participate in your ethnic traditions? | 89.2 |
| GA | Use the computer? | 89.2 |
| SD | Choose what to eat? | 88.9 |
| LD | Do outdoor tasks? | 88.9 |
| GA | Are sports to you? | 88.9 |
| LD | Do things away from here? | 88.6 |
| SD | * Be able to use the phone in private? | 86.5 |
| LD | Watch movies with other people? | 86.5 |
| SD | Keep your room at a certain temperature? | 86.1 |
| SD | Follow a routine when you go to bed? | 83.8 |
| SD | * Lock things up to keep them safe? | 83.8 |
| SD | Keep the lighting in your room at a certain level? | 83.8 |
| SC | * Do things with groups of people? | 83.8 |
| GA | * Listen to music you like? | 83.8 |
| GA | Do gardening activities? | 83.8 |
| GA | Do your favorite hobbies? | 83.3 |
| SC | Be a member of a club? | 83.3 |
| LD | Eat at restaurants? | 82.4 |
| SC | * Participate in religious services or practices? | 81.1 |
| SC | Reminisce about the past? | 81.1 |
| GA | Exercise? | 81.1 |
| SC | Be around children? | 81.1 |
| SD | Choose when to get up in the morning? | 80.6 |
| EC | Choose the gender of your caregiver? | 80.6 |
| SD | Choose what time of day to bathe? | 78.4 |
| LD | * Have snacks available between meals? | 78.4 |
| EC | Talk to a professional if you are sad or worried? | 78.4 |
| GA | * Have books, magazines, and newspapers to read? | 78.4 |
| GA | Attend activities such as concerts or plays? | 78.4 |
| SD | Choose when to eat? | 77.1 |
| SD | Follow a routine when you wake up in the morning? | 73 |
| LD | Be involved in cooking? | 72.2 |
| GA | Play games? | 72.2 |
| SD | Choose where to eat? | 69.4 |
| SD | Take a nap when you wish? | 67.6 |
| LD | Order take-out food? | 66.7 |
SD= Self Dominion, EC= Enlisting others in Care, LD=Leisure & Diversionary Activities, SC= Social Contact, GA= Growth Activities
MDS 3.0 Questions from Section F. Preferences for Customary Routine and Activities
Discussion
Honoring preferences is the foundation of person-centered care (Brooker, 2007). It represents a journey towards honoring the rich contributions that individuals have made in their lifetime. Understanding whether preference importance ratings are static or dynamic informs clinical care and promotes efficiency through assessments at appropriate intervals. The goal of this paper was to have older adults living in nursing homes and a sample of university students report on the preferences that are important to them at two points in time one week apart to determine the consistency of common preferences. Results demonstrate that frail older adults are just as (in)consistent as younger adults. Overall, the level of inconsistency in reporting preferences by young and old alike points to the need for a closer examination as to why people’s preferences change over time. Our previous work suggests (Heid et al., in press) that there are a myriad of reasons why individuals change their minds about what is important to them in their daily lives (e.g., mood, facility schedule, quality of social interactions, weather). More research is needed to examine both person and environmental reasons for these changes.
Our findings are consistent with theory which purports preferences as a reflection of dynamic psychological needs (Deci & Ryan, 2000). As suggested and found here, preference expression is inherently an idiographic process unique to each individual. Individuals can differ on how many important preferences they hold dear and can differ on the extent to which those preferences are fulfilled at any given point in time (Van Haitsma et al., in press), but each reported preference stands in its own right as a reflection of a specific aspect of an individual's ever changing reaction as a "living system" (Ford, 1994). This places the PELI tool squarely in the camp of idiographic, not nomothetic, measurement. From this perspective it may not be appropriate to refer to reliability in a traditional test-retest reliability frame. We explored the use of a more clinically meaningful measure of consistency, which simply looks at whether the respondent remained consistent in reporting a preference as "important" or "not important" over time. In this framework, inconsistency reflects a fundamental change of mind about the valence of a preference to a given individual. Being rated as "inconsistent" in this schema means that the person has "crossed a line" in reporting that a previously important reference is now not important, or vice versa. Using this clinically meaningful indicator, we found a significant increase (from 66 percent to 88 percent) in the level of consistency in reporting preferences over time for nursing home residents and university students alike. These findings are consistent with Cohen-Mansfield and Jenson’s (2007) findings with self-care preferences of community dwelling older adults that demonstrate intra-person reliability when allowing one-point fluctuations in reporting. Yet, our findings extend this work in articulating the possible need for a clinically-meaningful distinction of a one-point change based on a valence scale.
These findings raise several implications for care delivery. In a care environment, a fundamental change of mind about the importance of a daily preference should signal a reevaluation of how care is delivered especially when a preference shifts across the scale from “important” to “not important”. This has significant implications for the current assessment process in nursing homes. Currently, preference assessment has been built into the MDS 3.0 Section F (Housen et al, 2009) as a required element of a larger assessment process for nursing home residents in general (Saliba & Buchanan , 2008). Table 3 indicates the specific preference items of the MDS 3.0 Section F that are embedded within the PELI tool (items with an asterisk). Current regulatory requirements dictate that the 16 items of Section F be administered upon admission and then annually thereafter. Our results, however, imply that some preferences may meaningfully change more frequently than that for cognitively capable nursing home residents. It should be noted that a limitation of this study is that our results do not speak to the frequency of assessments needed for less cognitively capable residents, who comprise a majority of the nursing home population. (Alzheimer’s Association, 2013). Nonetheless, among cognitively capable residents, our results suggest that half (8 out of 16) of the Section F items are consistently reported by more than 90% of the residents. Yet, half of the mandatory items in Section F, and the majority of the PELI items assessed, changed over a one-week period as reported by a significant subset of residents. Stability of these preferences over a longer period of time, such as the mandated one-year window, is not known.
Our results also suggest that preference consistency may be related to the type of preference being reported. In this sample of nursing home residents, participants consistently reported preferences from each domain of the PELI: enlisting others in care, self-dominion, social contact, leisure and diversionary activities, and growth activities. However, proportionally speaking, consistency in preference reporting was more strongly represented in the domains of enlisting others in care and self-dominion, while those representing social contact, leisure and diversionary activities, and growth activities were more variable. This suggests that personal care preferences may be more stable than other preferences. This is an intriguing finding that could reflect the well-known processes of "institutionalization" of persons living in residential care environments (Goffman, 1961), where persons internalize the rigid schedules of the system to the point where they become part of the person’s definition of self.
Alternatively, structuring preferences into domains using classical measurement techniques is complicated because people are complicated. The same preference could fulfil a need for relatedness in one person, autonomy in another, and competency in yet another. For example, volunteer work could fulfil a need for relatedness (social contact) in one person, but could fulfil a need for competency (doing something within their capacity) for another. And in a third person, volunteer work could fulfil a need for autonomy. This limits our ability to discuss the PELI measure using traditional reliability (test-retest) terms. However, we believe that this is a jumping off point for a more robust discussion regarding measuring preferences, consistency of preferences, and preference congruence.
In the end, the results demonstrate similar consistency in reporting of everyday preferences by older adults in nursing homes as compared to university students. Yet, inconsistencies in reports are prevalent. More research is needed to help clarify the optimal frequency of preference assessment in nursing homes, and what person and environment variables may be predictive of changing one's mind about preference importance even over a short period of time. Answers to these questions will have significant implications for demands on staff time to assess preferences, and will deepen our understanding about how to provide quality, person- centered care.
Acknowledgments
The authors wish to thank the older adults and the university students who made this project possible by generously volunteering their time to help explore these important research questions.
Funding
This work was made possible by generous funding from the Harry Stern Family Center for Innovations in Alzheimer’s Care, and the NINR grant (1R21NR011334: PI Van Haitsma).
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