Scale Development

The focus group sessions were tape-recorded and were then transcribed into text. The audiotapes were erased after transcription. The content of the transcripts were analyzed by the Principal Investigator, a pharmacist, and then reviewed by another pharmacist prior to creating the initial item pool. The item pool was then shared with another group of clinicians and key opinion leaders—2 pharmacists, 1 nurse, 2 social workers— from the University of North Carolina and Duke University for further review. The purpose of this review was to further examine face validity, identify ambiguous content and edit item content. Final revisions were then made to the item pool and the survey instrument was developed to be included in the study questionnaire.

After the final revisions, a 21-item instrument (Survey of Caregiver’s Medication Concerns) which would identify the primary medication-related stressors was ready for inclusion in the study questionnaire. The instrument was divided into three sections and the 21 items were placed in the most appropriate category: (1) eight items related to medication administration (e.g., giving medications multiple times per day, managing and organizing medications, substitute for performing the task, convincing care-recipient to take

medications), (2) five items related to medication effects and side effects (e.g., knowing if medications are working, identifying adverse events and side effects of medications, communicating with patient about medications and problems) and, (3) eight items dealing with obtaining and paying for medications (e.g., ability to afford medications, visits to pharmacy). The categories and specific items that comprised this survey instrument are listed in Table 4.1.

Additional items were added to the study questionnaire to identify secondary medication-related stressors and covered time missed from work and social activities and times the caregiver was required to leave work early to handle medication problems. Secondary related stressors differ from the primary medication-related stressors in that they are not directly related to the tasks of managing the medications but are a by-product of the process. For example, managing a side effect (e.g., diarrhea) from the care-recipient’s medication regimen is directly related to the medication process (primary medication-related stressor) while missing dinner with friends because the caregiver must stay at home with the care-recipient is a result of the primary stressor (secondary medication-related stressor). These questions address items that were also identified in the focus group conducted in the pilot project phase of this research. Caregivers were asked to recall if they had to miss an entire day from work, leave work early or miss a social activity to deal with problems associated with managing their loved one’s medications. Responses were yes/no. If the caregiver responded ‘yes’ to one these three questions, they were asked to recall the number of times this had happened within the past 30 days. The variables identifying the numbers of times missed for each of these are continuous variables. These items are outlined in Figure 4.1.

Finally, ten items were developed to measure the caregiver’s perception of their current pharmacist and pharmacy services to create a pharmacy support scale. As with the primary and secondary medication-related stressors, these items were also created from information obtained during the caregiver focus groups and from a review of the literature. Caregivers were asked to indicate their level of agreement with each statement with

responses ranging from strongly disagree (score=0) to strongly agree (score=4). These items are outlined in Figure 4.2.

Table 4.1: Primary Medication-related Stressors: Survey of Caregiver Medication Concerns Scale (SCMC)

Strongly

Disagree Disagree Neutral Agree Strongly Agree Administering Medications

1. It is hard for me to give my loved one medication

more than one time a day. 0 1 2 3 4

2. It is easy to manage my loved one’s medications. 0 1 2 3 4 3. It is hard to organize all of my loved one’s

medications. 0 1 2 3 4

4. It is easier to keep track of my loved one’s

medications when I use a pill organizer. 0 1 2 3 4

5. I have trouble convincing my loved one to take

medications. 0 1 2 3 4

6. It is hard to keep the times of day straight when

giving my loved one his/her medication. 0 1 2 3 4

7. I worry about who will give my loved one

medication if I am not able to do it. 0 1 2 3 4

8. There has been a time when I had to hide my loved

one’s medication. 0 1 2 3 4

Effects of Medications

9. I worry at times that my loved one’s medications

are not working. 0 1 2 3 4

10. It is hard for me to know whether my loved one is

having a bad reaction to his/her medications. 0 1 2 3 4

11. I have trouble managing the side effects (for example, nausea, and diarrhea) from my loved

one’s medications. 0 1 2 3 4

12. I am concerned that my loved one is not receiving

the best medications for his/her condition. 0 1 2 3 4

13. I worry that my loved one will not be able to let

me know if the medications are causing problems. 0 1 2 3 4

Obtaining Medications

14. I have difficulty, on occasion, paying for my loved

one’s medication. 0 1 2 3 4

15. I have, on occasion, decided not to fill a

prescription for my loved one because money was

tight. 0 1 2 3 4

16. I have, on occasion, decided not to ask my loved one’s doctor for a prescription because money was tight.

0 1 2 3 4 17. There have been times when I have not had

reliable transportation to the pharmacy to pick up my loved one’s medications.

0 1 2 3 4 18. Each month, I have to make more than one trip to

the pharmacy to pick up medications for my

loved one. 0 1 2 3 4

19. There have been times when my own health has prevented me from giving my loved one

medication. 0 1 2 3 4

20. I have considered getting my loved one’s medications from outside of the United States because they are less expensive there.

0 1 2 3 4 21. I worry that I will not be able to afford my loved