Appendix 5: Health Literacy Assessment Facilitator's Guide for Patient Focus Groups

I. Introduction

Hi, and thank you for coming today. My name is (facilitator), and I am from (institution or group). I will be conducting today's focus group discussion. Also here is my colleague, (notetaker), who will help take notes.

Today's group session is part of a study to help folks like yourselves better understand the medicines they take and when to refill their medicines. Today you will be asked to answer some questions about the (pharmacy name) pharmacy and about your thoughts and feelings when you go to get your medicines filled.

II. Objective (not to be read to the group)

The objective of this focus group is to identify barriers to accessing the pharmacy as perceived by patients with limited literacy.

III. Consent and Ground Rules

[The envelopes containing the copy of the consent form and incentive should be given out at the beginning of the focus group.]

Before we get started, I want to let you know what will happen today during this 2-hour session. We will start by going over a Consent Form that will describe the project and that each of you must sign if you want to take part in the discussion. You will give me the signed copy and you will get a copy for your records. There is also a short information sheet to fill out for our records. After this, we will have our discussion. What questions do you have before I explain the Consent Form?

Okay, feel free to follow along as I read the form to you. Feel free to ask me questions if you don't understand something. If you agree to take part in this focus group session, sign at the bottom of the page and return the signed form to me.

(Read consent form, and if participants agree, have them sign and return the forms.)

A copy of this form is in your envelope along with $20 as a thank you for talking with us today. Our phone number is on this consent form, so please feel free to get in touch with us if you have any questions after this focus group.

I will be asking you questions so that we can learn how easy or hard it is for (pharmacy name) patients to find their way around the pharmacy area. We are also interested in hearing your thoughts and about experiences you have had working with your pharmacist.

Your participation in this focus group is completely up to you. You can choose to take part in as much or as little as you want. Also, there are no right or wrong answers to any of the questions I will ask. You are the experts, so I want you to be as complete and honest as possible in the answers you give. We are here today to learn about your opinions and thoughts about the (pharmacy name) pharmacy.

We will be tape recording the discussion to make sure we don't miss anything, so we need everybody to be sure to speak one at a time, speak loudly, and speak clearly. Also, we would like you to fill out an information sheet that lets us keep track of who has participated in the focus group today. Your name will not be connected to either your answers to the questions asked or the answers to the written questions. The tapes and papers will be kept by us and destroyed once all the information is recorded.

Finally, just some housekeeping issues: The bathrooms are located (indicate location). If you need to use the bathroom during our discussion, feel free to do so, but please be as quiet as possible when you open and close the door because we are recording everything. This session will take about two hours. Please turn off your cell phones. What questions or concerns do you have before we begin?

IV. Patient demographic questionnaire

(Distribute a demographic questionnaire to each participant.) This is a short information sheet. Please answer all the questions on this sheet. Do not write your name on it. The purpose of this is to get to know a little bit more about all of you who are in today's focus group. Your name will not be connected with any of your responses. This is just for our information. Please hand it back to me when you are finished.

Okay, let's begin!

V. Physical environment

This first set of questions is to find out what it's like for patients to get to the (pharmacy name) pharmacy and find their way around.

Think back to the first time you went to the pharmacy. How easy or hard was it to find?
1. Why was it easy/hard to find?
If you worked at the pharmacy, how would you give directions over the phone to a new patient who is trying to find (pharmacy name or name of hospital or clinic in which pharmacy is located)?
Have you ever noticed the signs and symbols that are posted (on the walls/on the floors) to direct patients to different places in the hospital or clinic (if applicable)?
1. If YES: Have you ever used these to help you find your way to the pharmacy?
  1. Do the signs help you understand what you are supposed to do?
    1. If YES: In what ways do the signs help you?
    2. If NO: Why are the signs not helpful?
    3. If NO: What could be done to make the signs more helpful?
When you are talking to a pharmacist, are there things about the pharmacy that make it hard for you, physically, to talk to or hear the pharmacist?

PROBE (only suggest these if participants cannot name barriers): Barriers may include raised platforms, windows, high counters, excessive noise in the area.

PROBE: What would make it easier for you to talk to or hear the pharmacist? Tell me more about this.

VI. Care process and workforce

This next set of questions is about your experiences with pharmacy staff and the kind of care you receive at the pharmacy.

How friendly or unfriendly are the pharmacy staff members?
If you need help with something, do you feel comfortable asking a staff person?

PROBE: If you do not feel comfortable asking staff questions, please explain why.
Sometimes patients need to talk to a staff person in private to ask questions about a medicine or their health. Is there a private space at the pharmacy where you would feel comfortable talking to staff person?

PROBE: If so, do you use it? Why or why not? If not, do you think there should be such a space? Would you use it? Why or why not?
Before giving you your prescription, tell me about what the pharmacist says?

PROBE: What do you remember talking about when you pick up your medicines?
When you pick up your prescription, has a pharmacist ever told you about the following information about your prescription?
1. The name of the medicine.
2. What the medicine does.
3. How to take the medicine and for how long.
4. Any special directions about preparing the medicine.
5. Any special directions about taking the medicine.
6. Side effects, harmful effects, if you can take it with another medicine, how to avoid any harmful problems from taking the medicine wrong, or what to do if you have taken the medicine wrong.
7. How you should change the dose of your medicine if you need to (i.e., diabetes management or pain medication).
8. Where to keep the medicine (including avoiding high temperatures or humidity).
9. Information on when to refill your prescription.
10. Information on how to refill your prescription.
11. What to do if you forget to take your medicine.
  1. How much of this information do you think you remember as you are being told by the pharmacist?
  2. How much of this information do you still remember by the time you get home? A few days after you've gotten your prescription?
  3. Does the pharmacist write down any of the information to help you remember it? If so, what does she or he write down? In what ways is this helpful to you?
Doctors and pharmacists often use medical words that patients may not understand. Examples of some of these words are anticoagulant, oral hypoglycemic, or hypertension.
1. Does your pharmacist use complicated words?
2. If so, does the pharmacist explain what these words mean in plain language?
3. In what ways might this affect your understanding of your medical condition?
4. In what ways might this affect your understanding of how to take your medicines?
How much time do you typically spend with your pharmacist?
1. Is this enough time for you to ask all of your questions?
2. Does the pharmacist take enough time to make sure you have understood everything she/he told you?
Has a pharmacist ever asked you if you understand what she or he has told you?
1. Has a pharmacist ever asked you to repeat back what she or he told you?
2. If you were speaking to a pharmacist and did not understand what she or he was telling you, what would you say?
When you are given your last prescription, you are asked to sign a paper in a notebook or an electronic screen. Why are you signing?
1. i. What have you been told by a staff person or the pharmacist about signing?

You're all doing great. This is really helpful for us to hear your thoughts!

VII. Paperwork and written communication

The next set of questions is about reading and understanding printed materials from the pharmacy, including the bottles that your medicines come in and the paper inserts that come with your medicine. I have some samples of materials to show you, and then I'll ask some questions about how easy you think they are to understand. Please be as clear and honest as possible when you answer the questions.

Please tell me how easy or hard the following items are for you to read and understand.

PROBE (only suggest these if participants cannot name barriers): Things that can make printed materials hard to read and understand may include print size, or the way the print looks
1. Prescription bottle labels.
2. Prescription information inserts.
PROBE (if participants rank materials hard to read): What makes the bottle labels and inserts hard to read or understand?
1. What do you usually need to know when you are trying to find information on printed materials?
2. Do printed materials tell you what you want to know about your medicines or health conditions?
3. Are the printed materials organized in a way that makes it easy for you to find the information you need?
4. If you cannot easily find the information you need, what makes it difficult to find?
Do you ever have to fill out forms in the pharmacy? (Last on list, eliminate if time is running out.)
1. How easy or hard are the forms used in the pharmacy to understand and fill out?
2. Is there staff available to help you with filling out the forms?
3. Has anyone ever offered to help you fill out forms?

Okay, we're almost done. Only one more set of questions!

VIII. Culture

In this last set of questions, I'd like to talk about whether and how well you think the pharmacy helps patients.

How are patients treated?

PROBE: In what ways do you feel patients are treated with respect and dignity?

PROBE: In what ways do you feel they are treated as if they are a burden? For example, how might patients with different situations and backgrounds (i.e., homeless vs. insured) be treated?
Some patients bring other people with them to doctors' appointments and to the pharmacy to pick up medicines. Is this your experience? Do you find it helpful to bring someone else with you?
1. If YES: How does the pharmacy deal with this? If someone else is with you, does the pharmacist speak directly to you or to those with you?
Many patients have lots of medical problems. They may have trouble seeing or hearing. Do any of you have these types of problems?
1. If YES: How do the pharmacists adapt to your needs?
  1. PROBE: Do they speak louder or slower? Do they show you what your pills look like?
  2. How does this make you feel?
2. Are you comfortable with the way the pharmacists work with you?
  1. If YES: Why?
  2. If NO: Why not?
Have you ever been asked about what you think about the pharmacy and the services it provides?
1. If YES: What have you said?
2. If NO: Would you like to give the pharmacy some feedback?
  1. If YES: What would you say?
[Only ask if asked previous question and people have told you they get help with forms and if there is enough time.] If help is offered with filling out forms, tell me about how this is offered and how it makes you feel? (If the help is not offered to the person him/herself, then he/she may not have any feelings about it.)

PROBE: Is it offered in a way that makes patients feel embarrassed?

PROBE: Is it offered in a way that makes patients feel comfortable?

IX. Thank you

That's all the questions we have for you today. Thank you very much for your time and your thoughts. This information will be very helpful for us to better understand how to address patient needs.

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Is Our Pharmacy Meeting Patients' Needs? Pharmacy Health Literacy Assessment Tool User's Guide