432455 ckerson et al.Journal of Applied Gerontology
JAG32610.1177/0733464811432455Di
Brief Report
The Perception of Meaningfulness and Performance of Instrumental Activities of Daily Living From the Perspectives of the Medically At-Risk Older Adults and Their Caregivers
Journal of Applied Gerontology 32(6) 749–764 © The Author(s) 2011 Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/0733464811432455 jag.sagepub.com
Anne E. Dickerson1, Timothy Reistetter2, and Jennifer R. Gaudy3 Abstract The purpose of the study was to understand the impact of chronic disability on the functional ability of older adults. Thirty older adult participants and their caregivers were asked to identify which instrumental activities of daily living (IADL) are most meaningful and how their disability affected performance. Data collected through individual analysis indicated that the most important IADL tasks were driving and managing medication. Both older adult participants and their caregivers similarly perceived the health condition as significantly affecting the performance of all of the IADLs. However, there was a difference in the perception of the prior level of functioning for managing medication (z = 2.45, Manuscript received: August 11, 2011; final revision received: October 24, 2011; accepted: November 16, 2011 1
East Carolina University, Greenville, NC, USA The University of Texas Medical Branch, Galveston, TX, USA 3 Chapel Hill, NC, USA 2
Corresponding Author: Anne E. Dickerson, PhD, OTR/L, FAOTA, East Carolina University, 3305 Health Sciences Bldg., Greenville, NC 27858, USA. Email: [email protected]
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p = .024) and phone use (z = 2.26, p = .014). Results arrived at, and to be discussed, were in agreement with previous research findings indicating that complex tasks of daily living, particularly driving, are significant to the older adult’s quality of life. Keywords older adult, driving, IADL Aging is associated with chronic illnesses such as heart disease, stroke, chronic obstructive pulmonary disease, diabetes, and dementia (Estes, 2007; Fraker, 2007). Along with decreases in functional capacities related to normal aging, individuals with these chronic illnesses usually have decreased capabilities to perform their daily tasks, including their most valued and meaningful activities. With the numbers of individuals older than the age of 65 continuing to rise (Wan, Sengupta, Velkoff, & DeBarros, 2005), there will be increased need of the health care system to provide care for medically at-risk older adults. This will include assessments of instrumental activities of daily living (IADL) to determine whether it is safe for an older adult to live independently or he or she needs services such as occupational and physical therapy to decrease the risk of injury. Assessments for IADLs tend to be based on self-report, caregiver report, or observations of performance by professionals, particularly occupational therapists. Observation of performance is the best indicator of true level of performance, but with shortened stays in hospitalization, practitioners often have limited time to spend with their clients (Defrances, Hall, & Podgornik, 2005). Practitioners focus on basic activities of daily living (ADL; that is, bathing, dressing, eating, etc.) and may not have time to assess the more complex IADLs such as driving and home management (Defrances et al., 2005). The result may be that the client and caregiver are not prepared for managing the complex tasks of daily life and the client may be at risk for injury when attempting to perform these tasks. If the medically at-risk older adult does not have an accurate perception of his or her performance and the caregiver does not have an accurate measure of performance upon discharge, clients may be at risk for injury or potential problems once he or she returns to the home environment. Therefore, the critical question for health care discharge teams is whether the client is at risk for injury or dependency when he or she returns to his or her home environment. For example, upon discharge after recovery from a stroke, how does the client or caregiver know if and when the client is able to return to driving? There is a need for evidence-based screening or assessment tools that accurately predict safety risks and what level of risk exists. However, before developing or identifying these tools, it is important to determine which activities are perceived
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as important and meaningful to the majority of older adults and whether the medically at-risk individual perceives that the chronic illness will affect his or her performance in these tasks. Since it is possible that the caregiver of the client may have a different perception of the client’s ability, it is important to interview both client and caregiver about the perception of function. Discovering which complex activities are most meaningful as well as problematic for older adults with chronic disabilities may assist therapists in providing their interventions more effectively and permit family members to make informed decisions. In summary, although performance ability in older adults has been measured by self-reports, interviews, and observations, the degree of meaningfulness of the specific daily activities has not always been measured. To address quality of life issues for the medically at-risk adults, there is a need to determine which tasks have become difficult to perform and propose safety risks. This study considered the older adult’s and caregiver’s perspectives to further understand the impact of chronic disease, primarily stroke, on functional ability. Specifically, the research questions were as follows
Research Question 1: What IADL tasks are the most meaningful to older adults? Research Question 2: What IADL tasks are most affected by the presence of chronic disability Research Question 3: Do the perceptions of meaningfulness and performance capabilities differ between older adults and their caregivers?
Method Design The study to be discussed is a descriptive one and used a structured interview format with objective scales to measure each participant’s and caregiver’s perception of the meaningfulness and functional performance of selected instrumental IADLs. Open-ended questions were used to explore how the older adult and caregiver dealt with the performance difficulties. East Carolina University’s Institutional Review Board for the University Health Sciences reviewed and approved the study, and all participants signed consent forms.
Participants Two groups of participants were used for this study. The first group consisted of adults with a recent hospitalization due to a chronic illness and who were expecting
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Table 1. Demographics of Participants and Caregivers. Older adults (n = 30)
Frequency
Older adult and caregiver demographics Gender Male 11 Female 19 Education Some high 9 school High school 8 diploma Some college 6 Associates 2 Bachelor’s 2 degree Master’s degree 2 Ethnicity African 11 American Caucasian 18 Hispanic 1
Percent
Caregivers (n = 30) Frequency
Percent
36.7 63.3 30
13 17 2
43.3 56.7 6.7
26.7
8
26.7
20 6.7 6.7
14 1 4
48.3 3.4 13.8
6.7 36.7
0 11
0 36.7
60 3.3
19 0
63.3 0
to return to their own home and participate in complex IADLs. The primary diagnosis was stroke (n = 27) with many also having diabetes. Hospitalization was for a duration of 4 to 90 days, with an average stay of 28 days. The older adults were in the age range of 48 to 89 years, and the average age was 68 years. For each older adult, there was a paired individual who was identified as the main caregiver. The caregivers’ relationships included spouse (n = 14), adult child (n = 9), friend or sibling (n = 2), and paid caregiver (n = 2). The caregivers were in the age range of 19 to 85 years, and the mean age of the caregivers was 56 years. Table 1 summarizes demographics for both groups.
Instrumentation The structured interview survey consisted of statements and questions concerning 11 IADL tasks. The tasks were shopping for groceries, planning a meal, cooking, driving, planning a trip, community participation (to include church), home management, yard work, financial management, medication management, and phone use. Since conceptually the research question was intended for tasks more complex than tasks of daily living (i.e., bathing, feeding, dressing, etc.),
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these specific tasks were selected based on the instrumental tasks of daily living identified from the Occupational Therapy Practice Framework (American Occupational Therapy Association, 2008). Based on discussion with occupational therapists, experts in aging, and pilot interviews of older adults, the list was refined to 11 tasks typical for a majority of older adults. In addition to demographic questions, the interview consisted of three statements to which the participants indicated their agreement on a 5-point Likert-type scale. The first statement about meaningfulness and importance of each IADL tasks specifically stated: “Shopping for groceries (‘inserted’ each of the 11 tasks) is meaningful and important to you (or your care recipient).” For this statement, the participants indicated the level of importance of this task using the following responses on the scale of 1 to 5: 1 = not important at all, 2 = not important, 3 = somewhat important, 4 = important, and 5 = very important. The next two statements were “Prior to health condition, were you (or your care recipient) able to manage the IADL task without help?” and “Has your (or your care recipient) health condition significantly affected you ability to do IADL independently?” These two statements were also on a 5-point scale with response options ranging from 1 = strongly disagree to 5 = strongly agree. If needed, prior to was clarified as prior to the most recent hospitalization or stated as “before your stroke.” If the older adult participant or caregiver indicated the IADL was not meaningful to the older adult participant (not important or not important at all), the next two statements were eliminated, since it was not a meaningful task to the older adult. If the older adult participants or caregivers indicated that the health condition affected the older adults’ abilities, a description of the specific difficulties and how the difficulties were addressed was requested. A standardized evaluation was not used for this study, and therefore, no validity or reliability was established. The statements were reviewed by three content experts and piloted with two older adults, both with recent hospitalizations. The two caregivers were also given the survey to complete. Based on the content expert and pilot data feedback, the wording and procedure were finalized, and deemed appropriate for older adults and their caregivers.
Procedure An occupational therapist employed at the Day Rehabilitation program at Pitt County Memorial Hospital, Greenville, North Carolina, screened clients for inclusion criteria and notified the researchers when there was a willing participant and caregiver. The participant was interviewed either prior or after a therapy session, with the caregiver being interviewed separately on the same day. Interviews were conducted in a private room at the rehabilitation center to ensure
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Number of Participatnts
30 25
26
24
20
23
22
22
22
20
19
18
17
15
16
10 5 0
Figure 1. The number of older adults who identified the 11 instrumental tasks of daily living as meaningful and important.
privacy and confidentiality. Data from the surveys were organized using MS Excel and then imported into SPSS for quantitative analysis. The open-ended questions were summarized for each participant and caregiver pair.
Results Meaningfulness Figure 1 answers the first research question, illustrating the number of specific IADLs in the order of their meaningfulness to the older adult participants. Driving was the IADL that was mentioned most frequently as meaningful by 26 out of the 30 participants. Wilcoxon matched-pairs signed-rank test was computed to examine whether there was a significant difference between the participants and their caregiver in the degree of meaningfulness of the 11 IADLs. The only significant difference was in the meaningfulness of phone use (z = 2.54, p = .011; see Table 2).
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Table 2. Comparison of Older Adults’ (n = 30) and Caregivers’ (n = 30) Perception of Meaningfulness Using the Wilcoxon Signed-Rank Test. IADL meaningfulness (median) Shopping for groceries Planning a meal Cooking Driving Planning a trip Community participation Home management Yard work Managing finances Managing medication Phone use a
Older adults
Caregivers
z score
Significance (two tailed)
4.0 4.0 4.5 5.0 4.0 5.0 5.0 4.0 5.0 5.0 4.5
4.0 4.0 5.0 5.0 4.0 5.0 5.0 4.0 5.0 5.0 5.0
1.26 1.85 1.60 0.65 0.92 0.69 1.09 0.55 1.24 0.78 2.54
0.207 0.065 0.111 0.516 0.360 0.493 0.277 0.582 0.215 0.438 0.011a
Significant.
Perception of Level of Functioning Figure 2 illustrates the perceptions of older adults’ level of functioning prior to the health condition and the current level of functioning by both the participant and the caregiver. Using a Wilcoxon signed-rank test, both groups perceived significant differences between performances of all the IADLs prior to the health condition compared to the current performance level. This is, both participants and caregivers perceived the health condition as significantly affecting performance of each IADLs (p < .01). Table 3 illustrates the perceived prior and current level of functioning for both older adults and their caregivers, based on their answers to the second research question. Based on median scores for the participants, the most affected IADLs appeared to be cooking, driving, community participation, home management, and yard work (e.g., median is “1.0”). To answer the third research question, if there was a difference in the performance of level of specific IADLS following hospitalization, Wilcoxon’s signed-rank tests were again used. In terms of the current level of functioning, there were no significant differences between the two groups. The older adults and their caregivers similarly perceived the health condition as significantly affecting the performance of all of the IADLs (see Table 3). However, there was a difference in the perception of the prior level of functioning. Managing medication (z = 2.45, p = .024) and phone use (z = 2.26,
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5 4 3 2 1 0
Prior Level of Func on Par cipant & Cargiver Current Level of Func on Pa cipant Only Current Level of Func on Cargiver Only Phone use
Medica on management
Financial management
Yard work
Home management
Par ca on in the community
Planning a trip
Driving
Cooking
Meal Planning
Shopping for groceries
Figure 2. Comparison of IADL (instrumental activities of daily living) function before and after hospitalization. Both older adult participants and their caregivers agreed with respect to prior level of function. Participant and caregivers differed with respect to the amount of decline in IADL function after hospitalization.
p = .014) were both significantly different in terms of the perception of ability prior to the health condition, with the caregivers indicating a perceived higher level of functioning. With respect to current level function, all IADLs were seen as equally affected (z = 3.96, p = .083).
Discussion The results of this study suggest that IADLs are important to older adults and the presence of a chronic condition, the majority being stroke, has a significant impact on their ability to perform meaningful tasks. In this study, the most important IADLs were driving and management of medications. However, activities such as community participation, managing finances, home management, and shopping for groceries were rated as meaningful by 67% of the older adults. Although cooking and yard work appear to be less meaningful, these tasks might be considered uniquely tied to family or household roles. The older adults, most often women, who cooked for the family, valued this task highly and wanted to return to cooking, and others who previously did not cook attached no meaning to the activity. Similarly, those who gardened or did yard work indicated it was an extremely meaningful task and that they greatly missed it. Planning a meal
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5.0 5.0 5.0 5.0 5.0 5.0 5.0 5.0 5.0 5.0 5.0
5.0 5.0 5.0 5.0 5.0
5.0 5.0 5.0 5.0 5.0
Caregivers
5.0
Participants
0.11 2.26 2.45
b
b
.914 .024a .014a
.083
1.73
b
.317 .083 .48
.564
p
1.00 1.73 0.71
0.58
Z
1.0 1.0 2.0 2.0 3.0
4.0 1.0 1.0 2.0 1.0
2.0
Participants
1.0 2.0 2.0 2.0 2.0
2.0 1.0 1.0 2.0 2.0
1.0
Caregivers
Median Current level of function (CLOF)
Note: Wilcoxon signed-rank test for matched pairs with ordinal data. a Significant differences. b Denotes an equal number of negative and positive rankings between participants and caregivers.
Shopping for groceries Planning a meal Cooking Driving Planning a trip Community participation Home management Yard work Managing finances Managing medication Phone use
Median Prior level of function (PLOF)
4.00 3.77 2.95 4.05 3.99
3.96 4.19 4.08 3.61 4.26
1.29
z
.763 .792 .399 .719 .954
.083 .951 .521 .932 .058
.196
p
Table 3. Perception of Prior and Current Level of Functioning of IADLs Between Older Adult Participants and Caregivers Using Wilcoxon Signed-Rank Test.
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and planning a trip were both the lowest in terms of their meaningfulness; however, more than 50% of the participants valued these tasks. Based on the openended questions that addressed the level of difficulties involved, it was clear that planning a meal was closely linked to cooking, but this was important for only those who like to cook; planning a trip, however, was not seen as an essential activity until the individual was going to be able to return to driving. These results are similar to a 2001 study in Australia (Fricke & Unsworth, 2001) where community-living older adults were asked to complete a diary on daily tasks and their value. In that study, the four most important tasks were phone use, driving a car/use of transportation, reading, and medication management. Since reading was not included in this study as an IADL task (it would be a leisure activity), the results indicate the meaningfulness of particular tasks are similar for older adults in North Carolina and in Australia who live in the community. In this study, the task that was rated most frequently as very important was driving, with 26 out of 30 participants (87%) indicating this value. The four participants who did not value driving had already retired from driving prior to their current health condition. Although the sample used in this study was small, it offers evidence that driving is the most meaningful activity for older adults and remains one of the most valued IADLs that they wished to resume. Similar to other studies, the participants in the study indicated that driving contributed to their sense of independence (Freeman, Gange, Munoz, & West, 2006; Kostyniuk & Shope, 2003; Ralston et al., 2001; Touhy, 2008). Based on the input about managing without driving, most of the participants indicated that the loss of independent driving ability affected performance of community participation, managing finances, shopping for groceries, and planning a trip. Several of the participants specifically indicated they had difficulty managing medication because they were unable to drive to the pharmacy. Community participation was hindered because the participants had to depend on someone else for transport to the places they wished to go. Others reported difficulties with managing their finances because driving was required to pay their bills or go to the bank. The results here validate an earlier study indicating driving cessation decreases the performance of activities outside the home (Marottoli et al., 2000). Other studies have shown that depression increases among older adults as participation in community activities decreases because of their inability to drive (Fonda, Wallace, & Herzog, 2001; Ragland, Satariano, & Macleod, 2005; Windsor, Anstey, Butterworth, Luszcz, & Andrews, 2007). Although depression was not directly measured in this study, when asked about how difficulties were managed, several participants expressed significant despondent feelings because of their specific inability to drive, underscoring the importance of driving to older adults. Interestingly, Edwards, Perkins, Ross, and Reynolds (2009) found that being a
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nondriver was associated with increased risk for a 3-year mortality. Even when sensory and physical function, health, psychological well-being, and cognitive abilities were adjusted, nondriving and time to death remained significant. In their study, nondrivers were 4 to 6 times more likely to die than drivers in a subsequent 3-year period. Managing medication was also a valued task of the participants. Since returning to health entails strict adherence to prescribed medication, it is not surprising that adhering to medication would be of great importance. The finding that there was a significant difference between the perception of the caregivers and the participants about the participants’ prior level of functioning in managing medications was unexpected and not easily explained. The analysis may have been compromised by the fact that some of the clients had not been on medication prior to the hospitalization. Results of meaningfulness and performance of phone use being perceived differently by the older adults and their caregivers was also unexpected. Although older adults and caregivers indicated it was important and meaningful, some older adults apparently did not value it as much as the caregivers thought they did. The fact that the caregivers average age was lower than the average age of the older adult may account for this significant difference in terms of meaningfulness. In addition, some of the participants did indicate they had difficulty using cell phones, which may explain the discrepancy between perceptions of previous level of functioning between the two groups. When asked about the actual current difficulties experienced in phone use, since most of the participants had one-sided weakness, they expressed the need for assistance with dialing, answering, or hanging up the phone, which in turn indicates phone use had been affected by such disabilities. However, the participants did indicate that they could talk on the phone once they had assistance with set up. Since studies have found social interaction as a key contributor to feelings of independence and dignity on the part of older adults (Baker, 2005; Touhy, 2008), a finding that is also in agreement with that of a previous work (Fricke & Unsworth, 2001)—that it is one of the most important IADLs—it is important that practitioners address this particular IADL so that social connection is maintained even when driving is no longer an option for those older adults with disabilities that prevent them from driving. The least meaningful IADL in this study was planning a trip. When asked about how to deal with this difficulty, most older adult participants indicated that, since they could not drive, they did not feel the desire to plan trips. In the case of caregivers, they reported that the older adult could probably still plan a trip but that many times the older adult did not want to do so. Reasons given also included that they had to depend on someone else to take them, were self-conscious of their disability, or fear that they would get sick and not be able to go on the trip.
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Although there was not a significant difference between the caregiver’s and the older adult participant’s perception of current driving ability, when asked about how the participants and the caregivers were managing the specific difficulties, it did seem that caregivers perceive the older adult participant’s driving ability to be more impacted by their health condition than the older adult. Each of the caregivers reported that the older adult was currently unable to drive due to deficits related to the medical condition (i.e., stroke); however, three of the older adult participants stated specifically that although they were not driving and the stroke affected their ability, they felt they would still be able to get back to driving. As driving was the most meaningful task among the IADLs, as perceived by the study participants, it is understandable that it might be hard to admit difficulties with this valued task . This finding is consistent with a study on self-assessment of driving ability by stroke survivors (Scott et al., 2009). Scott et al. found that stroke survivors who no longer drove considered their current abilities as better than average and few would acknowledge they might be worse. Only when asked to compare themselves to familiar companions did they indicate awareness of their deficits. However, the researchers found that survivors compensated for their deficits by exaggerating the abilities of their companion in their responses. Interestingly, the Scott et al. study provided some additional insight. In their study, the significant others of the stroke survivors felt that physical abilities, cognitive functioning, and professional advice were most important in the decision-making process when he or she is asked about resuming driving; however, the stroke survivors endorsed only convenience and ease as the most important factors. Unfortunately, misconceptions of driving ability can pose significant safety risks. Participants who believe they are able to drive despite their limitations may present a safety risk for themselves or other motorists while driving. In this study, there were some instances of discrepancy concerning the perception of performance capacity between the caregiver and older adult participant. This warrants practitioners to ensure there is an explicit discussion with both the older adult and the caregiver about the ability to drive. Research shows that at least 25% of the older adults who are told not to drive continue to do so (Dobbs, Carr, & Morris, 2002); thus, there may need to be documentation of IADL performance capabilities during discharge planning with the caregivers. Another safety concern is managing medication. Pohjasvaara and colleagues (2007) found managing medication to be impaired by chronic illness. Generally, when asked about the specifics of difficulties with managing medication, both participants and caregivers identified decline in fine motor skills as well as decreased comprehension of dose requirements. The question remains whether the participants will be adhering to their medication in a safe manner, and in particular, correct dosage requirements and schedules. This raises concerns not only
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about recovery from the current illness but also about prevention of further decline of health. When the participants were asked what prevents them from participating successfully in any of the valued ADLs, the overwhelming response from both the older adults and their caregivers was that the physical difficulties of being in a wheelchair and loss of function of one upper extremity made it difficult to engage in complex IADLs. Almost all stated that poor balance, poor coordination, fatigue, and slowness made it difficult to finish any complex task. Most caregivers indicated that assistance with most of these tasks continued because of the physical difficulties. Although approximately half of the participants stated they were positive about future outcomes, several indicated that they were “waiting” to get better so they could return to carrying out valued tasks; however, about a third of the participants seemed resigned to their disabilities. The caregivers of the resigned participants acknowledged that the older adults were feeling depressed because of their decline in performance. Depression is common following onset of a chronic illness (Gillen, 2006; Matthews, 2006; Turvey, Klein, & Pies, 2006), and in this study, it was identified by caregivers as low self-esteem and embarrassment due to their current functional limitations. Many did not want to be seen in public or even participate in community events for fear of judgment or inability to perform even simple tasks. These feelings of depression are supported by other studies that indicate depression is related to a decrease in selfefficacy (Jerant, Kravitz, Moore-Hill, & Franks, 2008; Robinson-Smith, Johnston, & Allen, 2000). For health care providers, identifying depression would be important to determine what intervention might help with alleviating symptoms related to depression. It may be that helping older adults return to valued and meaningful daily tasks might be a more direct method that can help improve their performance and life satisfaction. With shorter hospital stays and rehabilitations, practitioners must demonstrate through research the most effective methods of intervention for remedial or compensatory ways of performing valued daily tasks so that services can be continued past the acute stages, for longterm rehabilitation.
Limitations One of the limitations was that the survey instrument was a novel, nonstandardized assessment that used self-report of the participants and their caregivers. However, the order and the manner in which the questions were asked were the same for both participants and caregivers. Actual performance was not tested; however, it is clear that observed performance is the best measure (Taylor & Kielhofner, 2006; Yasuda et al., 2004). Furthermore, the goal of this study was
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not to evaluate performance but to identify which tasks among the IADL are seen meaningful and important, as well as most affected, by medically at-risk older adults with a specific debilitating medical condition. Another limitation was there was no investigation of the possible influence of types of caregivers. It is proposed that results may have varied depending on whether the caregiver was a paid caregiver or a nonpaid one or whether the caregiver had taken a “caregiving” role only for a short time. Also it is possible that due to embarrassment or awkwardness family members may not give a true, objective representation of the participant’s functional abilities. A final limitation is this study was that we were unable to assess the effect of varying diagnostics on the performance of IADLs. Although the majority of the participants were in poststroke stage, there was no further investigation that aimed to assess whether the stroke was on the left or the right side and whether the difference in such conditions identified would affect the performance of IADLs.
Summary This study compared the perceptions of medically at-risk older adults and their caregivers on important complex IADLs. Driving and managing medications were the tasks that were perceived as most meaningful to both groups. In most cases, the caregivers and medically at-risk older adults held similar perceptions about the impact of the health condition on the performance of IADLs. Future research should examine both perception and performance ability by assessing actual performance and comparing it to perception of performance. By looking at actual performance of the IADLs selected in this study and comparing this to self-report of function, a better presentation of the effects of chronic illness as well as a clearer understanding of the caregiver and participant perception of performance could be achieved. Finally, this study confirms the importance of driving for older adults and the expressed desire by participants to resume driving. As with managing medication, safety is a concern, and thus, both of these activities of daily living should be addressed in discharge planning and in continued rehabilitation services.
Declaration of Conflicting Interests The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The author(s) received no financial support for the research, authorship, and/or publication of this article.
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Ragland, D. R., Satariano, W. A., & MacLeod, K. E. (2005). Driving cessation and increased depressive symptoms. Journals of Gerontology: Series A: Biological Sciences & Medical Sciences, 60(3), 399-403. Ralston, L. S., Bell, S. L., Monte, J. K., Rainey, T. B., Brayman, S., & Shotwell, M. (2001). Giving up the car keys: Perceptions of well elders and families. Physical & Occupational Therapy in Geriatrics, 19(4), 59-70. Robinson-Smith, G., Johnston, M. V., & Allen, J. (2000). Self-care self-efficacy, quality of life, and depression after stroke. Archives of Physical Medicine & Rehabilitation, 81(4), 460-464. Taylor, R. R., & Kielhofner, G. (2006). Collecting data. In G. Kielhofner (Ed.), Research in occupational therapy methods of inquiry for enhancing practice (pp. 530-547). Philadelphia: F.A. Davis Company. Touhy, T.A. (2008). Mobility. In P. Ebersole, P. Hess, T. A. Touhy, K. Jett, & A. S. Luggen (Eds.), Toward healthy aging human needs & nursing response (7th ed., pp. 65-87). St. Louis, MO: Mosby Elsevier. Turvey, C. L., Klein, D. M., & Pies, C. J. (2006). Depression, physical impairment, and treatment of depression in chronic heart failure. Journal of Cardiovascular Nursing, 21(3), 178-185. Wan, H., Sengupta, M., Velkoff, V. A., & DeBarros, K. A. (2005). 65+ in the United States: Current population reports. Washington, DC: U.S. Government Printing Office. Windsor, T. D., Anstey, K. J., Butterworth, P., Luszcz, M. A., & Andrews, G. R. (2007). The role of perceived control in explaining depressive symptoms associated with driving cessation in a longitudinal study. Gerontologist, 47(2), 215-223. Yasuda, N., Zimmerman, S., Hawkes, W. G., Gruber-Baldini, A. L., Hebel, J. R., & Magaziner, J. (2004). Concordance of proxy-perceived change and measured change in multiple domains of function in older persons. Journal of the American Geriatrics Society, 52(7), 1157-1162.
Author Biographies Anne E. Dickerson, PhD, OTR/L, FAOTA is Professor and Director of Research for the Older Adult Driver Initiative (ROADI) in the Department of Occupational Therapy at East Carolina University, Greenville, NC. Timothy Reistetter, PhD, OTR, FAOTA is an Associate Professor in the Department of Occupational Therapy at the University of Texas Medical Branch, Galveston, TX, USA. Jennifer R. Gaudy, MS, OTR/L is currently a traveling therapist working in the Pacific Northwest and this paper is based on her master’s degree thesis in Occupational Therapy from East Carolina University.
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JAG32610.1177/0733464811432455Di
Brief Report
The Perception of Meaningfulness and Performance of Instrumental Activities of Daily Living From the Perspectives of the Medically At-Risk Older Adults and Their Caregivers
Journal of Applied Gerontology 32(6) 749–764 © The Author(s) 2011 Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/0733464811432455 jag.sagepub.com
Anne E. Dickerson1, Timothy Reistetter2, and Jennifer R. Gaudy3 Abstract The purpose of the study was to understand the impact of chronic disability on the functional ability of older adults. Thirty older adult participants and their caregivers were asked to identify which instrumental activities of daily living (IADL) are most meaningful and how their disability affected performance. Data collected through individual analysis indicated that the most important IADL tasks were driving and managing medication. Both older adult participants and their caregivers similarly perceived the health condition as significantly affecting the performance of all of the IADLs. However, there was a difference in the perception of the prior level of functioning for managing medication (z = 2.45, Manuscript received: August 11, 2011; final revision received: October 24, 2011; accepted: November 16, 2011 1
East Carolina University, Greenville, NC, USA The University of Texas Medical Branch, Galveston, TX, USA 3 Chapel Hill, NC, USA 2
Corresponding Author: Anne E. Dickerson, PhD, OTR/L, FAOTA, East Carolina University, 3305 Health Sciences Bldg., Greenville, NC 27858, USA. Email: [email protected]
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p = .024) and phone use (z = 2.26, p = .014). Results arrived at, and to be discussed, were in agreement with previous research findings indicating that complex tasks of daily living, particularly driving, are significant to the older adult’s quality of life. Keywords older adult, driving, IADL Aging is associated with chronic illnesses such as heart disease, stroke, chronic obstructive pulmonary disease, diabetes, and dementia (Estes, 2007; Fraker, 2007). Along with decreases in functional capacities related to normal aging, individuals with these chronic illnesses usually have decreased capabilities to perform their daily tasks, including their most valued and meaningful activities. With the numbers of individuals older than the age of 65 continuing to rise (Wan, Sengupta, Velkoff, & DeBarros, 2005), there will be increased need of the health care system to provide care for medically at-risk older adults. This will include assessments of instrumental activities of daily living (IADL) to determine whether it is safe for an older adult to live independently or he or she needs services such as occupational and physical therapy to decrease the risk of injury. Assessments for IADLs tend to be based on self-report, caregiver report, or observations of performance by professionals, particularly occupational therapists. Observation of performance is the best indicator of true level of performance, but with shortened stays in hospitalization, practitioners often have limited time to spend with their clients (Defrances, Hall, & Podgornik, 2005). Practitioners focus on basic activities of daily living (ADL; that is, bathing, dressing, eating, etc.) and may not have time to assess the more complex IADLs such as driving and home management (Defrances et al., 2005). The result may be that the client and caregiver are not prepared for managing the complex tasks of daily life and the client may be at risk for injury when attempting to perform these tasks. If the medically at-risk older adult does not have an accurate perception of his or her performance and the caregiver does not have an accurate measure of performance upon discharge, clients may be at risk for injury or potential problems once he or she returns to the home environment. Therefore, the critical question for health care discharge teams is whether the client is at risk for injury or dependency when he or she returns to his or her home environment. For example, upon discharge after recovery from a stroke, how does the client or caregiver know if and when the client is able to return to driving? There is a need for evidence-based screening or assessment tools that accurately predict safety risks and what level of risk exists. However, before developing or identifying these tools, it is important to determine which activities are perceived
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as important and meaningful to the majority of older adults and whether the medically at-risk individual perceives that the chronic illness will affect his or her performance in these tasks. Since it is possible that the caregiver of the client may have a different perception of the client’s ability, it is important to interview both client and caregiver about the perception of function. Discovering which complex activities are most meaningful as well as problematic for older adults with chronic disabilities may assist therapists in providing their interventions more effectively and permit family members to make informed decisions. In summary, although performance ability in older adults has been measured by self-reports, interviews, and observations, the degree of meaningfulness of the specific daily activities has not always been measured. To address quality of life issues for the medically at-risk adults, there is a need to determine which tasks have become difficult to perform and propose safety risks. This study considered the older adult’s and caregiver’s perspectives to further understand the impact of chronic disease, primarily stroke, on functional ability. Specifically, the research questions were as follows
Research Question 1: What IADL tasks are the most meaningful to older adults? Research Question 2: What IADL tasks are most affected by the presence of chronic disability Research Question 3: Do the perceptions of meaningfulness and performance capabilities differ between older adults and their caregivers?
Method Design The study to be discussed is a descriptive one and used a structured interview format with objective scales to measure each participant’s and caregiver’s perception of the meaningfulness and functional performance of selected instrumental IADLs. Open-ended questions were used to explore how the older adult and caregiver dealt with the performance difficulties. East Carolina University’s Institutional Review Board for the University Health Sciences reviewed and approved the study, and all participants signed consent forms.
Participants Two groups of participants were used for this study. The first group consisted of adults with a recent hospitalization due to a chronic illness and who were expecting
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Table 1. Demographics of Participants and Caregivers. Older adults (n = 30)
Frequency
Older adult and caregiver demographics Gender Male 11 Female 19 Education Some high 9 school High school 8 diploma Some college 6 Associates 2 Bachelor’s 2 degree Master’s degree 2 Ethnicity African 11 American Caucasian 18 Hispanic 1
Percent
Caregivers (n = 30) Frequency
Percent
36.7 63.3 30
13 17 2
43.3 56.7 6.7
26.7
8
26.7
20 6.7 6.7
14 1 4
48.3 3.4 13.8
6.7 36.7
0 11
0 36.7
60 3.3
19 0
63.3 0
to return to their own home and participate in complex IADLs. The primary diagnosis was stroke (n = 27) with many also having diabetes. Hospitalization was for a duration of 4 to 90 days, with an average stay of 28 days. The older adults were in the age range of 48 to 89 years, and the average age was 68 years. For each older adult, there was a paired individual who was identified as the main caregiver. The caregivers’ relationships included spouse (n = 14), adult child (n = 9), friend or sibling (n = 2), and paid caregiver (n = 2). The caregivers were in the age range of 19 to 85 years, and the mean age of the caregivers was 56 years. Table 1 summarizes demographics for both groups.
Instrumentation The structured interview survey consisted of statements and questions concerning 11 IADL tasks. The tasks were shopping for groceries, planning a meal, cooking, driving, planning a trip, community participation (to include church), home management, yard work, financial management, medication management, and phone use. Since conceptually the research question was intended for tasks more complex than tasks of daily living (i.e., bathing, feeding, dressing, etc.),
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these specific tasks were selected based on the instrumental tasks of daily living identified from the Occupational Therapy Practice Framework (American Occupational Therapy Association, 2008). Based on discussion with occupational therapists, experts in aging, and pilot interviews of older adults, the list was refined to 11 tasks typical for a majority of older adults. In addition to demographic questions, the interview consisted of three statements to which the participants indicated their agreement on a 5-point Likert-type scale. The first statement about meaningfulness and importance of each IADL tasks specifically stated: “Shopping for groceries (‘inserted’ each of the 11 tasks) is meaningful and important to you (or your care recipient).” For this statement, the participants indicated the level of importance of this task using the following responses on the scale of 1 to 5: 1 = not important at all, 2 = not important, 3 = somewhat important, 4 = important, and 5 = very important. The next two statements were “Prior to health condition, were you (or your care recipient) able to manage the IADL task without help?” and “Has your (or your care recipient) health condition significantly affected you ability to do IADL independently?” These two statements were also on a 5-point scale with response options ranging from 1 = strongly disagree to 5 = strongly agree. If needed, prior to was clarified as prior to the most recent hospitalization or stated as “before your stroke.” If the older adult participant or caregiver indicated the IADL was not meaningful to the older adult participant (not important or not important at all), the next two statements were eliminated, since it was not a meaningful task to the older adult. If the older adult participants or caregivers indicated that the health condition affected the older adults’ abilities, a description of the specific difficulties and how the difficulties were addressed was requested. A standardized evaluation was not used for this study, and therefore, no validity or reliability was established. The statements were reviewed by three content experts and piloted with two older adults, both with recent hospitalizations. The two caregivers were also given the survey to complete. Based on the content expert and pilot data feedback, the wording and procedure were finalized, and deemed appropriate for older adults and their caregivers.
Procedure An occupational therapist employed at the Day Rehabilitation program at Pitt County Memorial Hospital, Greenville, North Carolina, screened clients for inclusion criteria and notified the researchers when there was a willing participant and caregiver. The participant was interviewed either prior or after a therapy session, with the caregiver being interviewed separately on the same day. Interviews were conducted in a private room at the rehabilitation center to ensure
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Number of Participatnts
30 25
26
24
20
23
22
22
22
20
19
18
17
15
16
10 5 0
Figure 1. The number of older adults who identified the 11 instrumental tasks of daily living as meaningful and important.
privacy and confidentiality. Data from the surveys were organized using MS Excel and then imported into SPSS for quantitative analysis. The open-ended questions were summarized for each participant and caregiver pair.
Results Meaningfulness Figure 1 answers the first research question, illustrating the number of specific IADLs in the order of their meaningfulness to the older adult participants. Driving was the IADL that was mentioned most frequently as meaningful by 26 out of the 30 participants. Wilcoxon matched-pairs signed-rank test was computed to examine whether there was a significant difference between the participants and their caregiver in the degree of meaningfulness of the 11 IADLs. The only significant difference was in the meaningfulness of phone use (z = 2.54, p = .011; see Table 2).
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Table 2. Comparison of Older Adults’ (n = 30) and Caregivers’ (n = 30) Perception of Meaningfulness Using the Wilcoxon Signed-Rank Test. IADL meaningfulness (median) Shopping for groceries Planning a meal Cooking Driving Planning a trip Community participation Home management Yard work Managing finances Managing medication Phone use a
Older adults
Caregivers
z score
Significance (two tailed)
4.0 4.0 4.5 5.0 4.0 5.0 5.0 4.0 5.0 5.0 4.5
4.0 4.0 5.0 5.0 4.0 5.0 5.0 4.0 5.0 5.0 5.0
1.26 1.85 1.60 0.65 0.92 0.69 1.09 0.55 1.24 0.78 2.54
0.207 0.065 0.111 0.516 0.360 0.493 0.277 0.582 0.215 0.438 0.011a
Significant.
Perception of Level of Functioning Figure 2 illustrates the perceptions of older adults’ level of functioning prior to the health condition and the current level of functioning by both the participant and the caregiver. Using a Wilcoxon signed-rank test, both groups perceived significant differences between performances of all the IADLs prior to the health condition compared to the current performance level. This is, both participants and caregivers perceived the health condition as significantly affecting performance of each IADLs (p < .01). Table 3 illustrates the perceived prior and current level of functioning for both older adults and their caregivers, based on their answers to the second research question. Based on median scores for the participants, the most affected IADLs appeared to be cooking, driving, community participation, home management, and yard work (e.g., median is “1.0”). To answer the third research question, if there was a difference in the performance of level of specific IADLS following hospitalization, Wilcoxon’s signed-rank tests were again used. In terms of the current level of functioning, there were no significant differences between the two groups. The older adults and their caregivers similarly perceived the health condition as significantly affecting the performance of all of the IADLs (see Table 3). However, there was a difference in the perception of the prior level of functioning. Managing medication (z = 2.45, p = .024) and phone use (z = 2.26,
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5 4 3 2 1 0
Prior Level of Func on Par cipant & Cargiver Current Level of Func on Pa cipant Only Current Level of Func on Cargiver Only Phone use
Medica on management
Financial management
Yard work
Home management
Par ca on in the community
Planning a trip
Driving
Cooking
Meal Planning
Shopping for groceries
Figure 2. Comparison of IADL (instrumental activities of daily living) function before and after hospitalization. Both older adult participants and their caregivers agreed with respect to prior level of function. Participant and caregivers differed with respect to the amount of decline in IADL function after hospitalization.
p = .014) were both significantly different in terms of the perception of ability prior to the health condition, with the caregivers indicating a perceived higher level of functioning. With respect to current level function, all IADLs were seen as equally affected (z = 3.96, p = .083).
Discussion The results of this study suggest that IADLs are important to older adults and the presence of a chronic condition, the majority being stroke, has a significant impact on their ability to perform meaningful tasks. In this study, the most important IADLs were driving and management of medications. However, activities such as community participation, managing finances, home management, and shopping for groceries were rated as meaningful by 67% of the older adults. Although cooking and yard work appear to be less meaningful, these tasks might be considered uniquely tied to family or household roles. The older adults, most often women, who cooked for the family, valued this task highly and wanted to return to cooking, and others who previously did not cook attached no meaning to the activity. Similarly, those who gardened or did yard work indicated it was an extremely meaningful task and that they greatly missed it. Planning a meal
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5.0 5.0 5.0 5.0 5.0 5.0 5.0 5.0 5.0 5.0 5.0
5.0 5.0 5.0 5.0 5.0
5.0 5.0 5.0 5.0 5.0
Caregivers
5.0
Participants
0.11 2.26 2.45
b
b
.914 .024a .014a
.083
1.73
b
.317 .083 .48
.564
p
1.00 1.73 0.71
0.58
Z
1.0 1.0 2.0 2.0 3.0
4.0 1.0 1.0 2.0 1.0
2.0
Participants
1.0 2.0 2.0 2.0 2.0
2.0 1.0 1.0 2.0 2.0
1.0
Caregivers
Median Current level of function (CLOF)
Note: Wilcoxon signed-rank test for matched pairs with ordinal data. a Significant differences. b Denotes an equal number of negative and positive rankings between participants and caregivers.
Shopping for groceries Planning a meal Cooking Driving Planning a trip Community participation Home management Yard work Managing finances Managing medication Phone use
Median Prior level of function (PLOF)
4.00 3.77 2.95 4.05 3.99
3.96 4.19 4.08 3.61 4.26
1.29
z
.763 .792 .399 .719 .954
.083 .951 .521 .932 .058
.196
p
Table 3. Perception of Prior and Current Level of Functioning of IADLs Between Older Adult Participants and Caregivers Using Wilcoxon Signed-Rank Test.
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and planning a trip were both the lowest in terms of their meaningfulness; however, more than 50% of the participants valued these tasks. Based on the openended questions that addressed the level of difficulties involved, it was clear that planning a meal was closely linked to cooking, but this was important for only those who like to cook; planning a trip, however, was not seen as an essential activity until the individual was going to be able to return to driving. These results are similar to a 2001 study in Australia (Fricke & Unsworth, 2001) where community-living older adults were asked to complete a diary on daily tasks and their value. In that study, the four most important tasks were phone use, driving a car/use of transportation, reading, and medication management. Since reading was not included in this study as an IADL task (it would be a leisure activity), the results indicate the meaningfulness of particular tasks are similar for older adults in North Carolina and in Australia who live in the community. In this study, the task that was rated most frequently as very important was driving, with 26 out of 30 participants (87%) indicating this value. The four participants who did not value driving had already retired from driving prior to their current health condition. Although the sample used in this study was small, it offers evidence that driving is the most meaningful activity for older adults and remains one of the most valued IADLs that they wished to resume. Similar to other studies, the participants in the study indicated that driving contributed to their sense of independence (Freeman, Gange, Munoz, & West, 2006; Kostyniuk & Shope, 2003; Ralston et al., 2001; Touhy, 2008). Based on the input about managing without driving, most of the participants indicated that the loss of independent driving ability affected performance of community participation, managing finances, shopping for groceries, and planning a trip. Several of the participants specifically indicated they had difficulty managing medication because they were unable to drive to the pharmacy. Community participation was hindered because the participants had to depend on someone else for transport to the places they wished to go. Others reported difficulties with managing their finances because driving was required to pay their bills or go to the bank. The results here validate an earlier study indicating driving cessation decreases the performance of activities outside the home (Marottoli et al., 2000). Other studies have shown that depression increases among older adults as participation in community activities decreases because of their inability to drive (Fonda, Wallace, & Herzog, 2001; Ragland, Satariano, & Macleod, 2005; Windsor, Anstey, Butterworth, Luszcz, & Andrews, 2007). Although depression was not directly measured in this study, when asked about how difficulties were managed, several participants expressed significant despondent feelings because of their specific inability to drive, underscoring the importance of driving to older adults. Interestingly, Edwards, Perkins, Ross, and Reynolds (2009) found that being a
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nondriver was associated with increased risk for a 3-year mortality. Even when sensory and physical function, health, psychological well-being, and cognitive abilities were adjusted, nondriving and time to death remained significant. In their study, nondrivers were 4 to 6 times more likely to die than drivers in a subsequent 3-year period. Managing medication was also a valued task of the participants. Since returning to health entails strict adherence to prescribed medication, it is not surprising that adhering to medication would be of great importance. The finding that there was a significant difference between the perception of the caregivers and the participants about the participants’ prior level of functioning in managing medications was unexpected and not easily explained. The analysis may have been compromised by the fact that some of the clients had not been on medication prior to the hospitalization. Results of meaningfulness and performance of phone use being perceived differently by the older adults and their caregivers was also unexpected. Although older adults and caregivers indicated it was important and meaningful, some older adults apparently did not value it as much as the caregivers thought they did. The fact that the caregivers average age was lower than the average age of the older adult may account for this significant difference in terms of meaningfulness. In addition, some of the participants did indicate they had difficulty using cell phones, which may explain the discrepancy between perceptions of previous level of functioning between the two groups. When asked about the actual current difficulties experienced in phone use, since most of the participants had one-sided weakness, they expressed the need for assistance with dialing, answering, or hanging up the phone, which in turn indicates phone use had been affected by such disabilities. However, the participants did indicate that they could talk on the phone once they had assistance with set up. Since studies have found social interaction as a key contributor to feelings of independence and dignity on the part of older adults (Baker, 2005; Touhy, 2008), a finding that is also in agreement with that of a previous work (Fricke & Unsworth, 2001)—that it is one of the most important IADLs—it is important that practitioners address this particular IADL so that social connection is maintained even when driving is no longer an option for those older adults with disabilities that prevent them from driving. The least meaningful IADL in this study was planning a trip. When asked about how to deal with this difficulty, most older adult participants indicated that, since they could not drive, they did not feel the desire to plan trips. In the case of caregivers, they reported that the older adult could probably still plan a trip but that many times the older adult did not want to do so. Reasons given also included that they had to depend on someone else to take them, were self-conscious of their disability, or fear that they would get sick and not be able to go on the trip.
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Although there was not a significant difference between the caregiver’s and the older adult participant’s perception of current driving ability, when asked about how the participants and the caregivers were managing the specific difficulties, it did seem that caregivers perceive the older adult participant’s driving ability to be more impacted by their health condition than the older adult. Each of the caregivers reported that the older adult was currently unable to drive due to deficits related to the medical condition (i.e., stroke); however, three of the older adult participants stated specifically that although they were not driving and the stroke affected their ability, they felt they would still be able to get back to driving. As driving was the most meaningful task among the IADLs, as perceived by the study participants, it is understandable that it might be hard to admit difficulties with this valued task . This finding is consistent with a study on self-assessment of driving ability by stroke survivors (Scott et al., 2009). Scott et al. found that stroke survivors who no longer drove considered their current abilities as better than average and few would acknowledge they might be worse. Only when asked to compare themselves to familiar companions did they indicate awareness of their deficits. However, the researchers found that survivors compensated for their deficits by exaggerating the abilities of their companion in their responses. Interestingly, the Scott et al. study provided some additional insight. In their study, the significant others of the stroke survivors felt that physical abilities, cognitive functioning, and professional advice were most important in the decision-making process when he or she is asked about resuming driving; however, the stroke survivors endorsed only convenience and ease as the most important factors. Unfortunately, misconceptions of driving ability can pose significant safety risks. Participants who believe they are able to drive despite their limitations may present a safety risk for themselves or other motorists while driving. In this study, there were some instances of discrepancy concerning the perception of performance capacity between the caregiver and older adult participant. This warrants practitioners to ensure there is an explicit discussion with both the older adult and the caregiver about the ability to drive. Research shows that at least 25% of the older adults who are told not to drive continue to do so (Dobbs, Carr, & Morris, 2002); thus, there may need to be documentation of IADL performance capabilities during discharge planning with the caregivers. Another safety concern is managing medication. Pohjasvaara and colleagues (2007) found managing medication to be impaired by chronic illness. Generally, when asked about the specifics of difficulties with managing medication, both participants and caregivers identified decline in fine motor skills as well as decreased comprehension of dose requirements. The question remains whether the participants will be adhering to their medication in a safe manner, and in particular, correct dosage requirements and schedules. This raises concerns not only
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about recovery from the current illness but also about prevention of further decline of health. When the participants were asked what prevents them from participating successfully in any of the valued ADLs, the overwhelming response from both the older adults and their caregivers was that the physical difficulties of being in a wheelchair and loss of function of one upper extremity made it difficult to engage in complex IADLs. Almost all stated that poor balance, poor coordination, fatigue, and slowness made it difficult to finish any complex task. Most caregivers indicated that assistance with most of these tasks continued because of the physical difficulties. Although approximately half of the participants stated they were positive about future outcomes, several indicated that they were “waiting” to get better so they could return to carrying out valued tasks; however, about a third of the participants seemed resigned to their disabilities. The caregivers of the resigned participants acknowledged that the older adults were feeling depressed because of their decline in performance. Depression is common following onset of a chronic illness (Gillen, 2006; Matthews, 2006; Turvey, Klein, & Pies, 2006), and in this study, it was identified by caregivers as low self-esteem and embarrassment due to their current functional limitations. Many did not want to be seen in public or even participate in community events for fear of judgment or inability to perform even simple tasks. These feelings of depression are supported by other studies that indicate depression is related to a decrease in selfefficacy (Jerant, Kravitz, Moore-Hill, & Franks, 2008; Robinson-Smith, Johnston, & Allen, 2000). For health care providers, identifying depression would be important to determine what intervention might help with alleviating symptoms related to depression. It may be that helping older adults return to valued and meaningful daily tasks might be a more direct method that can help improve their performance and life satisfaction. With shorter hospital stays and rehabilitations, practitioners must demonstrate through research the most effective methods of intervention for remedial or compensatory ways of performing valued daily tasks so that services can be continued past the acute stages, for longterm rehabilitation.
Limitations One of the limitations was that the survey instrument was a novel, nonstandardized assessment that used self-report of the participants and their caregivers. However, the order and the manner in which the questions were asked were the same for both participants and caregivers. Actual performance was not tested; however, it is clear that observed performance is the best measure (Taylor & Kielhofner, 2006; Yasuda et al., 2004). Furthermore, the goal of this study was
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not to evaluate performance but to identify which tasks among the IADL are seen meaningful and important, as well as most affected, by medically at-risk older adults with a specific debilitating medical condition. Another limitation was there was no investigation of the possible influence of types of caregivers. It is proposed that results may have varied depending on whether the caregiver was a paid caregiver or a nonpaid one or whether the caregiver had taken a “caregiving” role only for a short time. Also it is possible that due to embarrassment or awkwardness family members may not give a true, objective representation of the participant’s functional abilities. A final limitation is this study was that we were unable to assess the effect of varying diagnostics on the performance of IADLs. Although the majority of the participants were in poststroke stage, there was no further investigation that aimed to assess whether the stroke was on the left or the right side and whether the difference in such conditions identified would affect the performance of IADLs.
Summary This study compared the perceptions of medically at-risk older adults and their caregivers on important complex IADLs. Driving and managing medications were the tasks that were perceived as most meaningful to both groups. In most cases, the caregivers and medically at-risk older adults held similar perceptions about the impact of the health condition on the performance of IADLs. Future research should examine both perception and performance ability by assessing actual performance and comparing it to perception of performance. By looking at actual performance of the IADLs selected in this study and comparing this to self-report of function, a better presentation of the effects of chronic illness as well as a clearer understanding of the caregiver and participant perception of performance could be achieved. Finally, this study confirms the importance of driving for older adults and the expressed desire by participants to resume driving. As with managing medication, safety is a concern, and thus, both of these activities of daily living should be addressed in discharge planning and in continued rehabilitation services.
Declaration of Conflicting Interests The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The author(s) received no financial support for the research, authorship, and/or publication of this article.
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Author Biographies Anne E. Dickerson, PhD, OTR/L, FAOTA is Professor and Director of Research for the Older Adult Driver Initiative (ROADI) in the Department of Occupational Therapy at East Carolina University, Greenville, NC. Timothy Reistetter, PhD, OTR, FAOTA is an Associate Professor in the Department of Occupational Therapy at the University of Texas Medical Branch, Galveston, TX, USA. Jennifer R. Gaudy, MS, OTR/L is currently a traveling therapist working in the Pacific Northwest and this paper is based on her master’s degree thesis in Occupational Therapy from East Carolina University.
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