Using Focus Groups to Examine Prospective Memory ...

Proceedings of the Human Factors and Ergonomics Society 58th Annual Meeting - 2014

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Using Focus Groups to Examine Prospective Memory Strategies in the Medication Management of Older Adults Nicole Fink, Natalee Cartee, Richard Pak Clemson University Older adults often strive to maintain an independent lifestyle. However, in order to live independently in the community, it is necessary that older adults are able to take responsibility for their own health-related tasks including medication management and health-related appointments. Successfully managing these health-related tasks requires the use of prospective memory (PM), yet the research documenting the specific PM tasks people encounter when managing health-related tasks is scant. The current paper describes a focus group study aimed at identifying PM tasks that older adults must remember and those they forget, as well as an examination into the current strategies used to assist with managing medications and health-related appointments.

Copyright 2014 Human Factors and Ergonomics Society. DOI 10.1177/1541931214581035

INTRODUCTION A key goal of many older adults is to maintain an independent lifestyle (Rogers, Meyer, Walker, & Fisk, 1998). In order to live independently in the community, an older adult must be able to take responsibility for his or her own medication (Lawton & Brody, 1969). Maintaining responsibility for one’s own medication requires the use of prospective memory (PM), or remembering to perform an activity at a later moment in the future. For instance, remembering to take medication during dinner or show up for a doctor’s appointment at a certain time, are both examples of PM demanding tasks. Older adults often have to manage numerous medications, and are more likely than other age groups to forget due to age related memory declines and increased rates of comorbidities and chronic diseases (Grocki & Huffman, 2007; Murray et al., 2004; Palen &Aalokke, 2006). Given this, it is not surprising that research suggests older adults have impaired PM performance on medication adherence tasks (e.g., Park & Kidder, 1996; Vedhara et al., 2004). Surprisingly, while there is a large body of research on medication adherence among older adults (e.g., George, Elliot, & Stewart, 2008; Murray et al., 2004), there is only minimal research available on the role of PM in medication adherence among older adults (Zogg, Woods, Sauceda, Wiebe, & Simoni, 2012). In a review on the role of PM in medication adherence, Zogg et al. (2012) describe several studies which provide evidence that poor prospective memory is a risk factor for non-adherence. The authors also discuss the relative merits of various techniques that have been used to measure prospective memory, such as the typical PM laboratory paradigm that asks participants to remember to push a certain button when they see a particular cue (Einstein & McDaniel, 1990). Performance-based assessments like the Memory for Intentions Screening Test (Raskin et al., 2010) and the Cambridge Prospective Memory Test (Wilson et al., 2005), as well as self-report assessments like the Prospective and Retrospective Memory Questionnaire (Smith et al., 2000), were also discussed. While such assessments offer an indication of how “good or bad” a person’s prospective memory is, they do little to detail the specific medicationrelated PM tasks people must tackle on a daily basis (Prakash, Mitchell, & Rogers, 2012; Woods et al., 2008; Zogg, 2012)

In an effort to better understand the PM strategies that older adults’ use to manage medication, Palen and Aalokke (2006) conducted an ethnographic study with 10 participants on how older adults manage their medications. Results of their study revealed that older adults rely on features of their physical environment (e.g., storage space), spatial and temporal orderings, socially distributed cognition, (i.e., another person’s help), and routines to help them organize medications and remember to take them. The ethnographic examination of medication management in older adults provided an in-depth look at how older adults manage their medication. However, ethnographic observation has a key disadvantage, notably that it is time-intensive typically resulting in a small number of subjects. It is possible for moderator bias to creep in when attempting to make generalizations from such a small not necessarily representative group of people (“An Introduction to Ethnography”, n.d.). Focus groups, on the other hand, offer a relatively quick and affordable way to gather rich input from multiple participants at once. In order to corroborate and expand the insights on PM in medication management gleaned by Palen & Aalokke (2006), the overarching goal of this study was to use a focus group methodology to examine the strategies that older adults use for medication management and health related appointments. METHOD Sample The study consisted of 6 focus groups, each with 3 – 5 older adults, for a total of 23 participants. Restrictions for participating included being between the ages of 65 – 90 and living independently. Specific age information was not available for 3 of the participants, but the mean age of the 21 other participants was 74.75 years old (st dev. = 6.05 years). Thirteen of the participants were female, while ten of them were male. Most of the participants were retired, but a couple of them worked part-time and/or volunteered. Participants were recruited through an existing database of older adult subjects, and received $15 compensation for approximately 1 ½ - 2 hours of their time. An institutional review board approved the study and written consent was obtained from participants.

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Design A focus group design was chosen as the ideal methodology for this study for several reasons. Firstly, focus groups allow participants to give concrete examples and provide a context to their answers, something limited by survey research. In addition, a moderator can ask follow-up questions in order to elaborate or clarify participant’s answers. Finally, the unique group nature of focus groups allows subjects to interact and build ideas off of one another. The focus groups in this study were semi-structured in nature, whereby the moderator followed a script but participants’ answers steered each focus group session in slightly different directions. A pilot focus group was conducted in order to test out the focus group script and refine it before the actual study. Details of the pilot study and the specific script improvements that were implemented are described in Fink et al., 2012. The overarching structure of the final focus group script was divided into the 8 different Instrumental Activity of Daily Living (IADL) categories (Lawton & Brody, 1969), with one practice category (‘exercise’) to act as an “ice-breaker” before the focus groups began. Each IADL category contained 2 exemplar tasks required to execute the IADL. For each exemplar task, 3 primary questions were asked: what steps are involved in the task, when do they forget the task, and what do they use to help remember the task. Due to the limited nature of this paper, only the IADL of ‘responsibility for own medications’ is discussed any further. DATA ANALYSIS Focus group recordings were transcribed and coded using both a top-down and bottom-up methodology. We started with a basic coding outline, but let the results guide our analysis. The preliminary coding scheme examined whether reported PM tasks were event-based or time-based tasks and whether they involved the prospective component or the retrospective component of PM. After conducting the focus groups, the coding scheme was refined to include the patterns of topics that participants reported on. RESULTS The results below describe the two exemplar tasks for the IADL category ‘responsibility for own medications’: 1) Medication management and 2) Health related appointments. For each of these tasks, participants were asked: 1. Describe your routine when it comes to health related appointments and what steps are involved. 2. What do you forget? 3. How do you help yourself remember? Medication Management All participants in the study reported taking at least 1 medication a day, with the number of medications taken per day ranging from 1 to 28 (mean = 6.2; median = 4). Interestingly, none of the participants mentioned having to

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take their medications at a particular time (e.g., 9am), rather participants aimed to take their medication at either a general time of day (e.g., morning, night), with a meal, or before bed. Pillboxes. The majority of participants reported that they use a pillbox to help them manage medication. Some of the pillboxes participants described were divided by days of the week, while others were divided by time of day (e.g., am/pm or morning, night). Those that did not use pillboxes typically kept their medication in the bottle it came in. Location of medication in plain sight. No matter whether medication was kept in a pillbox or a bottle, participants were very particular about where they placed their medication. Most participants reported that they kept their medication somewhere in plain sight, like on the kitchen counter or next to their toothbrush; some explained that if they kept it in plain sight, they would see the medication and would not forget to take it. Participants said things like, • “I keep my pillbox on the kitchen counter in plain view.” • “If that pillbox is not out on the sink, I will forget to do it…if it’s not sitting out there I sometimes will forget and end up having to double up.” • “The little tray I spoke about that’s near the end of the couch there. I keep everything I take on that. And so it’s always in sight and convenient.” • I have the pill seven-day thing and I have a number of them. So I usually fill up 5-6 weeks and I have them right in front of my place at the table. Location of medication out of sight. Nevertheless, some participants said that they purposely kept their medication out of sight in places like the kitchen cabinet or bathroom drawer. For instance, one participant said, • “I use the pillbox method like my husband. However, I don’t leave mine on the counter because I don’t like it sitting out on the counter all the time, which is problematic because then I do forget to take them.” • “They’re in my bathroom. I have a drawer that’s designated for medications. I have one side that’s the morning group and one side that’s the night group.” Another person helps remembering. A few participants mentioned that their spouse helps them remember to take their medication. Participants expressed the way a loved one helps them remember with quotes like: • “We kind of look out for each other.” • “Usually at night I’m going to close down the computer, so my husband yells, ‘have you taken your pills,’ and he’ll leave the light on in the kitchen, and that means I got to go in and get my night pills and shut down.” Other medication management issues. Some statements made by participants about how they manage medication did not fit into one of the categories described above, and fell into



a general medication management “other” category. These included the following statements: • “I try to just remember them [pills]” • “I keep it [medication] in my pocket, but then I forget it’s in my pocket, Sooner or later I’ll reach into my pocket and find it. Participants were also asked about instances where they have found themselves forgetting to take medication. Remembering medication is routine. Numerous participants reported that for the most part, they do not forget to take their medication because it is just part of their daily routine. The following quotes illustrate how older adults explained the routine aspect of taking medication: • “I have a routine that I follow every morning when I get up. I know exactly which order to take the pills.” • “Routine is the best thing. Get in a habit.” • “It’s a routine. It’s just a standard routine. You get up in the morning, and you go in the kitchen and you take your pills, and then you go to tai chi.” • “We don’t have much of a problem [remembering medication] because we do it first thing in the morning…even before coffee, so it’s not a problem.” A few participants specifically mentioned that they remember to take medication in the morning and evening by attaching it to the act of brushing their teeth. Participants said things like: • “No, I’m usually pretty good [at remembering medications]. If you brush your teeth before you go to bed at night…I just know I have to take that” • “No [don’t forget to take medication] because they’re right there where you brush your teeth.” • “I have a couple of medications that I take regularly and I attempt to attach them to my toothbrush…so as long as I can do it at a regulated morning and night time they are done as they need to be done.” Forgetting due to break in routine. As one may expect, if a routine is so useful in remembering to take medication, a break in routine was frequently reported as detrimental to medication management. Some example quotes demonstrating the negative consequences of a break in routine include: • “I got a routine and if I get off of it then I get lost.” • “I have a problem on weekends because our schedule changes.” Along the same lines, several participants reported that they tended to forget taking their medication only when they were traveling, or at a restaurant or friends house for dinner. Participants remarked things like: • “I do run into a problem when traveling, I might be at one of my cases, and if I don’t put it [pillbox] up there, which happens a lot, I could go a full day, day and a half, and then all of a sudden be like, ‘oh man, I haven’t taken my medication.’” • “I do hear a lot of people talking about that [vacation] being a problem, ‘haven’t taken them in 5 days because I forgot.’ Or ‘I went somewhere on vacation

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and didn’t have it, so I didn’t take them on vacation and I’m not taking them now.” “Traveling, just as he said, as we were about halfway here and I thought, “oh, if we’re having lunch today I forgot my Boswella and my fish oil”. So I will know when I get home to take them and that’s it.” I do forget occasionally in the evening. My routine is to take them right after dinner, and if we happen to be out at a friend’s or not at home, occasionally when I come home it just completely skips my mind.”

Forgetting because medication is non-critical. Some participants reported that they forget to take their non-critical medication more frequently than other medication, because non-critical medication is not as important. This phenomenon is illustrated with statements like: • “The others [medications] are not critical, so if I miss a day it doesn’t count.” • “If I happen to forget or take them a little later, they’re not the type of medication that it would make a great deal of difference” Remembering refills. Remembering to get medication refilled, although not specifically on the focus group script, came up in 5 of the 6 focus groups during the IADL discussion on medication management. Several of the participants said that when they see the quantity of medication getting low, they knew it is time to order more medication. Participants said things like: • “You call Wal-Mart when you see that they’re low so it’s a routine thing.” • “I just look at the number of pills that are still in the prescription bottle and decide when I should reorder or refill.” • “In terms of supply, it’s whenever they get low, I stock up.” Mail-order prescriptions. Several other participants said that they get their medication from mail order; participants said that it was nice not have to remember to get medication refilled because most mail-order companies automatically send medication every x number of weeks. Some exemplar quotes illustrating this are: • “We get them in the mail too so that helps.” • “I have my renewals on my medications on automatic renewal from mail order so I don’t really have anything personal that I have to do in that respect.” Health-related Appointments Paper Calendar. Most of the participants reported that they use some form of a paper calendar to help them remember medical-related appointments, including a desk calendar, wall calendar, and pocket calendar (kept in pocket or purse). Some descriptions of the paper calendars that participants utilize include:



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“We have a calendar that we mark appointments on…a big monthly calendar, 8 ½ x 11 or 9x 12 or something. It’s in the kitchen.” “I think it was this year I started with the calendar right at my place at the table.” “We don’t forget my appointments. We’ve got 2 calendars, one in the kitchen and one by the phone because those are the two places we are…My third one is always in my handbag…you bet [she records appointments in all 3 calendars], if I have a question I can look wherever I am. If I’m in a room where I don’t have access to the calendars, I do right there in my purse.”

Electronic Calendar. A few participants (some quite passionately) described their use of an electronic calendar to track all medical appointments. • “I keep mine [appointments] on my iPhone calendar.” • “I have an iPad and everything, everything goes in there in the calendar section.” • “I used to follow basically the same routine until I got an iPhone last year, and now my whole life is on the cloud. If my husband wants to put something in, her can go on the computer and log it in the cloud…my phone is always in my pocket or purse.” This participant followed up with an interesting comment later saying, “and also it’s [iPhone as scheduler] good because if I want to go back and find something, like when I was there [doctor’s office] last, it’s all on my phone. I love my phone.” Appointment reminder cards. Numerous participants stated that they used the appointment reminder cards given to them at the doctors’ office to help remember a future appointment. A few participants explained how they took the appointment card, wrote the appointment on the calendar, then discarded the appointment card: • “I always have it on my calendar and I always have a card from the doctor…I throw the card away after I’ve put it on my calendar.” • “When we come back from the doctor with the card or whatever, it’s immediately written on the calendar.” Many other participants explicitly stated that they kept the appointment reminder card affixed to their refrigerator or paper calendar to help them remember. Participants said: • “We stick their card on the refrigerator...it helps remind me that I have one [appointment] coming up.” • “For long range type things where you get an appointment card, I’ve got a thing that I made on the fridge that you can just stack cards in there.” • “A card from the doctor’s office… goes into a day by day desk calendar, so my desk calendar always has paper sticking out.” • “I’ll have the receptionist staple an appointment card on the page of my date book.”

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“We have a paper calendar, but it’s right on the desk and we usually take the appointment cards and attach it to the calendar.”

Appointment reminder calls. Lots of participants mentioned that they liked receiving appointment reminder calls from the doctor and the calls helped them remember the appointments. • “Mainly I rely on [to remember an appointment] the call from the doctor’s office.” • “The phone calls from the medical office with reminders I hope they never do away with.” • “All these providers call us a day or two early to remind us so we don’t miss appointments.” Another person helps remembering. A few participants mentioned that their spouse helps them remember to take their medication. Participants expressed the way a loved one helps them remember with quotes like: • “I count on my wife [to remember appointments].” • I use her [wife, to remember appointments]” Forgetting appointments. Most participants said that on the whole, with the use of various memory aides, they tend not to forget appointments. Nevertheless, a few participants said that in the past, if they did not look at their calendar or did not receive a phone call from the doctor, they have forgotten their appointment. One participant explained, while other participants nodded in agreement, that sometimes that he has forgotten to get blood work a week or two before a doctor’s appointment, and sometimes he had trouble remembering if he was supposed to fast or not before blood work. He said: • “I forgot that I had an appointment and I needed a blood draw, and I hadn’t gotten it, so I had to call and change it [my appointment] so I could go get the draw.” • “Sometimes you have to be reminded, when you have to draw blood, that you have to fast before, and takes, you know, I don’t do a good job of remembering to do it.” DISCUSSION The current study employed a focus group methodology to examine the role of PM in managing medications and health-related appointments. Interestingly, the medication results from this study were very similar to an ethnographic study previously conducted by Palen & Aalokke (2006). Both our study and the previous study found that older adults rely on routines, the physical environment, and other people to support medication-related PM demands. When it comes to medication management, older adults tended to use pillboxes and specific locations (often in plain sight) to help them remember to take their medication. One thing the current study revealed that was not in the ethnographic observation was the difficulty older adults experience when there is a break in their routine, they are traveling, or going out to eat.



The current study also examined health-related appointments, and found that older adults rely primarily on paper calendars (i.e., wall, desk, and pocket calendars) to help them remember appointments. Nevertheless, a few participants excitedly mentioned that they now do all of their scheduling on an electronic calendar (i.e., iPhone or iPad). Both studies also found that non-critical medications appear to be not as important in the minds of older adults, and they do not appear to fret if they forget to take a non-critical medication. Understanding the particular nature of medication management tasks and healthcare-related appointments can provide useful information towards the design of prospective memory aids. With memory aiding products ranging from micro personal devices to macro environmental designs (Caprani, Greaney, & Porter, 2006), there is huge potential for memory aid devices to support the PM demands that occur when performing IADLs. Our future research intends to examine how the specific PM problems participants discussed in these focus groups can be remedied via human factors design. REFERENCES “An Introduction to Ethnography.” (n.d.) Retrieved February 23, 2014 from http://www.google.com/url?sa=t&rct=j&q=&esrc=s&s ource=web&cd=2&ved=0CDAQFjAB&url=http%3A% 2F%2Fwww.rhetcomp.gsu.edu%2Fefolio%2FUSERS %2Fbmorton3%2FAnIntroductiontoEthnography.doc& ei=IIceU92KMcjU0QGIwIHACg&usg=AFQjCNGUgr ru_wjnyrXP7eqwjAibIUV2Tg&bvm=bv.62788935,d.d mQ Caprani, N., Greaney, J., & Porter, N. (2006). A review of memory aid devices for an aging population. PsychNology Journal, 4(3), 205-243. Einstein, G. & McDaniel, M. (1990). Normal aging and prospective memory. Journal of Experimental Psychology: Learning, Memory, and Cognition, 16(4), 717-726. Fink, N., Goodwin, M., Jewell, N. Kohn, S., Price, M. & Pak, R. (2012). How is prospective memory used to complete instrumental activities of daily living? Examining the topic through focus groups with older adults: Pilot results. Proceedings of the Human Factors and Ergonomics Society 56th Annual Meeting. 56(1), 2137-2141. Boston, MA: Human Factors and Ergonomics Society. Fink, N., Pak, R., Bass, B., Johnston, M., & Battisto, D. (2010) A Survey of nurses self-reported prospective memory tasks: What must they remember and what do they forget? Proceedings of the Human Factors and Ergonomics Society 54th Annual Human Factors and Ergonomics Society Meeting. San Francisco, CA. Fink, N., & Pak, R. (2010). Designing a comprehensive prospective memory aid for older adults. Poster presented at the 2010 Cognitive Aging Conference, Atlanta, GA.

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