CMS-10479 Focus Group Guide for Caregivers of Beneficiaries

Evaluation of the Multi-payer Advanced Primary Care Practice (MAPCP)
Demonstration
Focus Group Guide for Caregivers of Beneficiaries
A. Welcome
Hello and thank you for agreeing to meet with us today.
My name is [ ] and I work for The Henne Group, an organization that conducts focus
groups on a variety of topics. I would like to introduce [ ], who represents RTI
International [or Urban Institute], a nonprofit research organization.
You have been asked to participate in this focus group because you told us that you are a
caregiver for someone who is covered by Medicare, Medicaid, or both. You might be a
family member or a friend who helps this person with health decisions and goes with them to
their doctor appointments. Each of you has a card that lists the name of the person that you
represent in this discussion and the name of the primary practice that this person usually
visits.
We are working on a project funded by the Centers for Medicare and Medicaid Services
(CMS). We want to learn about the experiences you have had as a caregiver for the person
listed on your card. We especially want to hear about your experiences with their primary
care practice—the one that is also listed on your card.
My role is to guide our discussion and to encourage everyone to share their experiences, as a
caregiver, with the practice listed on the card. Some of you may even go to this same practice
for your own health needs. But for the purposes of this discussion today, please think about
your experiences with this practice in the caregiver role.
[Name] will be taking notes while we speak. [Name] will be observing our discussion from
the room behind the glass so that we can have our discussion without distractions. These
individuals are part of our research team. They will summarize the views that are shared in
these discussions. We are conducting 6 such discussions in [name of the state] and 42
additional discussions in 7 other states.
Before we get started, I’d like to go over a few things.
B. Review focus group process and ground rules for participation
First and foremost, during our discussion today, please keep in mind that there are no right or
wrong views or answers. Everyone’s opinion is important, so don’t hesitate to speak up
regardless of whether you agree with what others have said. In fact, if you have a different
idea or feeling, we especially want to hear from you so we can better understand the different
experiences that people have as a caregiver at the different practices in the area.

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To make sure that we understand everything people say today, we are making an audio and
video recording of this discussion, as well as taking notes. So we can hear everyone clearly,
we ask that only one person speak at a time. Even if you disagree with what someone is
saying, please allow that person to have a chance to speak about their experience before you
respond. It seems that every group has one or two “quiet” people, and if you are one of those,
I might call on you! You are free to say that you’d rather “pass”, but I’m hoping to hear from
everyone at some point during our discussion.
Your participation in this discussion is voluntary. You can choose not to answer any
questions. You can end your participation and leave the room at any time.
We will not share any of your comments with the person you care for, people who work at
their primary practice, their insurance provider, or anyone else in such a way that you or the
person that you care for can ever be identified. We will not list your name or the person you
care for in any of the written notes or transcripts. We will not put any names in our reports.
Our job is to ask questions and make sure we understand what you’re saying. We also want
to make sure that everyone has an opportunity to share their ideas and experiences.
Our discussion will last about two hours. I’ll balance the amount of time we spend on each
question, since we have a lot to get through from this guide. We won’t be taking an official
break, but if you need a personal break, please feel free to take one. [DESCRIBE
LOCATION OF RESTROOMS AND REFRESHMENTS.]
C. Hand out the name badges or name tents and ask to write first name only. [CAN BE
FILLED OUT BY PARTICIPANTS AS THEY ARRIVE].
D. Review informed consent process, obtain the signature of each focus group participant
on an informed consent form. [CAN BE REVIEWED WITH PARTICIPANTS AS THEY
ARRIVE OR JUST AS THEY ENTER THE ROOM, DEPENDING ON WHICH OPTION
IS MORE PRACTICAL FOR THE PARTICULAR SET UP].
Do you have any questions about the consent form? If you are okay with this, please sign the
informed consent form and pass it to us.
COLLECT INFORMED CONSENT FORMS; IF A PARTICIPANT IS NOT
COMFORTABLE SIGNING THE FORM, HE/SHE CANNOT PARTICIPATE IN THE
DISCUSSION.

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E. Introductions
To begin, let’s go around and introduce ourselves. Please tell us your first name and
something you like to do for fun or a hobby that you have. I’ll go first…
The primary purpose of today’s discussion is to learn about your experience as a caregiver
with the primary care practice listed on the card and the providers that work there.
During the next two hours, I will be referring to “the primary care practice”. When I say
that, I am referring to the practice listed on your card. When answering questions, please
think about the people who work at the practice listed on the card and the services they
provide.
The provider at that primary care practice could be a doctor, but may also be a nurse
practitioner or physician assistant. The person you care for may also receive services at the
practice from case managers, pharmacists, social workers, or patient advocates.
Do you have any questions so far, especially about what we mean by primary care practice or
providers?
I also will be referring to “the person you care for”. When I say that, I am referring to the
person listed on your card. When you answer my questions, please answer about that person.
I want to discuss one more important issue before we get started. Many of us enjoy talking
about our health. However, the focus is on your experience as a caregiver with that
person’s primary care practices and providers. So please limit comments about his/her
health or medical condition to facts that may have affected your experience. Please don’t be
offended if I ask you to clarify how his/her health or medical conditions shapes your
experience with his/her providers or if I move the discussion along to the next topic. Do you
have any questions? ANSWER.
Good, let’s get started!
Caregiver’s Role
1. As a caregiver, how do you assist the person you care for? What kinds of things do you
do for him/her? [PROBES: Help them with their daily activities? Plan and prepare meals?
Run errands?]
a. How do you assist them with their health care? [PROBES: Make doctor
appointments for them? Go with them to their doctor appointments? Remind them to
take their medication? Help them with physical therapy? Monitor their health status
by taking blood pressure, checking their blood glucose levels, or other things?]
b. Did the primary care practice of the person you care for ask about your role in
helping that person? Did they ask about any circumstances that could affect the way
you care for him/her, such as how close you live to the person you care for?

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The Primary Care Practice
2. People think about different things when picking out a primary care practice they want to
go to for their basic medical care. We are interested in learning about how the person you
care for selected his/her primary care practice that is listed on your card. Think back to
when the person you care for first chose his/her current primary care practice. Why did
he/she choose this practice? [POSSIBLE RESPONSES: PRACTICE WAS
RECOMMENDED BY FRIENDS OR FAMILY, FOUND IT IN A COMMUNITY
RESOURCE/DIRECTORY, CLOSE TO THEIR HOUSE, ACCEPTED
MEDICAID/MEDICARE PATIENTS, ETC.]
Patient Engagement and Management
3. When the person you care for goes to his/her primary care practice for a medical visit,
how well do the staff know his/her medical history and important health information?
[PROBES: Does his/her provider know all the medications he/she is taking and asks
about them at every visit? Does his/her provider ask about his/her nutrition and activity
level? What staff are you thinking of when answering this question?] Do you have to
remind the staff about the person’s medical history or important health information at
each visit?
a. When the person you care for last saw his/her provider, did the provider give you or
the person you care for any instructions or things to work on between visits? [IF
YES: Were written instructions provided?] Have they always done this or is this
something that has changed in the past year or so?
b. In what ways did the provider involve you in the plan for the person you care for?
[PROBES: Did they ask you how you could help with the plan? Did they ask you if
you understood the plan?] Have they always done this or is this something that has
changed in the past year or so?
4. Has the person you care for ever seen someone other than their usual provider at their
primary care practice? [OBSERVE NODS and other affirmative responses] Did that
other provider seem to know about your role as caregiver? Did they include you in the
conversation? How do you think seeing a different provider affects the care that the
person you care for receives?
5. What do the providers at the primary care practice of the person you care for do that
helps you to take better care of the person you care for? [PROBES: Reviews the
medications that he/she takes with you; gives you advice on nutrition/meal plans; teaches
you ways to provide care; writes instructions for you; asks you about household hazards,
such as scatter rugs that someone could trip or slip on.]
a. Have they always done this with you? If new, when did you notice this change?
b. What do you like about this? What are some things you don’t like about how they
are doing things? Why?

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6. If the person you care for has a chronic condition like diabetes or high blood pressure,
what does their provider do to help them manage it?
a. Does his/her primary care provider give him/her information, like lab results,
showing how well he/she has managed that condition over the past 6 months or
year? Does the provider also share this information with you?
b. Has anyone at your doctor’s office arranged for you to attend a special class about
managing the condition of the person you care for? This might be a class taught by
nurse educators about diabetes, hypertension, or coronary artery disease.
c. Has your primary care practice worked with you to develop a care plan for the
person you care for? What kind of information or instructions are in this care plan?
[PROBES: Does it include personal, patient-centered health goals (e.g., “to live long
enough to attend my son’s wedding” or “to be able to walk to the mailbox without
getting out of breathe”)?]
d. What has been most helpful to you to manage the condition of the person you care
for? What else could your provider do to help you manage their condition?
We’ve talked about how well providers at the practice of the person you care for knows
his/her medical history and things they do to help you manage their health. But there may be
other things providers should know about a patient in order to provide them with the best
care possible. For example, not all patients like to hear about bad health news the same way,
or they may have certain beliefs about whether a treatment option is the right one for them,
given their cultural background.
7. How well do providers understand the unique needs of the person you care for? Do they
consider his/her cultural beliefs and values when they talk to you or the person you care
for about his/her health condition or treatment options? [PROBES: Do they understand
challenges that you or the person you care for may have in making a weekly appointment
or in getting care at a facility across town, language barriers, or other things that are
important that may get in the way of the health of the person you care for?]
a. How could the providers at the primary care practice better understand his/her
values, his/her preferences for treatment, or just understand his/her unique needs?
8. There are many ways that caregivers and providers can work together to manage the
patient’s health or medical condition. For example, some caregivers rely completely on
the provider to know what is best for the person they care for, while others take a more
active role in the decisions that affect the person they care for. How much of a role do
you take in deciding how to best manage the health or condition of the person you care
for? [PROBES: Do you ask the provider questions, share your views about what you
think is best for them? Does the provider talk to you about the condition of the person
you care for or his/her treatment options in a way that is easy for you to understand?
Does the provider use medical words that are easy for you to understand?]
9. In what ways does the primary care practice of the person you care for support patients
and their caregivers getting involved in their care? [PROBES: Does the provider of the
person you care for talk to you about his/her condition or treatment options in a way that
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is easy for you to understand? Does the provider explain the pros and cons of different
treatment options? Is the provider willing to answer your questions? Are you able to
access the medical record of the person you care for when needed?]
a. Has this support been ongoing, or have you noticed that the practice has new ways to
provide better support or improve communication with you or the person you care
for?
b. If this is a new way of communicating, when did you first notice the change?
c. What do you think about these new practices? [PROBES: What do you like about
them? What are some things that you don’t like about them? Why?]
Access to Care
We’ve been talking about how you, the person you care for, and his/her provider have
managed his/her care. Now we would like to hear about getting to see their provider.
Remember, a provider could be a physician, nurse practitioner, or physician assistant. The
person you care for may also receive services from case managers, pharmacists, social
workers, or patient advocates working at the primary care practice.
10. How easy or hard is it for you or the person you care for to get an appointment when
he/she needs one? [PROBES: Can they get a same day appointment for urgent needs?
Can they get an appointment for nights, weekends, or holidays? Did the practice change
its hours of operation? If so, how? Are the practice’s hours more convenient for the
person you care for?]
a. In what ways can appointments be scheduled with a provider? [PROBES: online
through a patient portal, leaving a message at the clinic and someone calls back,
scheduling an appointment before leaving the hospital.]
b. Has scheduling an appointment gotten better, worse, or about the same over the past
year or so?
c. How are wait times for appointments? Have they gotten better or worse?
11. Some practices have added a patient portal to their website where patients and caregivers
can access lab or test results, contact providers electronically, or schedule appointments
electronically. Does the practice of the person you care for have a website that allows you
to do any of these things? [PROBES: Have you used this website, online tool or patient
portal?]
a. If uses: How easy is it to use? What do you like or dislike about it? What features do
you use the most? What improvements, if any, would you suggest?
b. If doesn’t use: Why not?
c. If the practice doesn’t have one or don’t know: Does this sound like something that
you would find useful? Why or why not?

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12. In the past year, have you noticed any other changes in the way the primary care practice
is working now that makes it easier or harder for you to help the person you care for to
get the care he/she needs, when he/she needs it?
a. Has the practice added staff to help him/her get the care he/she needs? If so, what
kind of staff have they added?
b. What do the staff do? [PROBES: Do they help you or the person you care for get
timely referrals to specialists? Provide you with ways to take better care of the
person you care for at home? Resolve other problems like getting necessary medical
equipment or transportation to and from appointments? Provide more education
about their health conditions? Have they helped you to transition the person you care
for from the hospital or a skilled nursing facility to home?]
13. Sometimes people go to an emergency room instead of going to their primary care
practice, even when they don’t feel their injury or illness is life-threatening. For example,
they may go to the ER for a sore throat or other routine services. In the past year, was the
person you care for more or less likely to go to an emergency room for help that their
primary care practice could provide?
a. If less likely, why did this change?
b. Has the primary care practice of the person you care for done anything to help
him/her avoid going to the emergency room? [PROBES: Has his/her provider or
anyone else in the practice spoken with him/her or with you about ways to better
manage his/her care or have they asked them or you to contact them before going to
an ER? Has his/her doctor talked to you or the person you care for about when it is
appropriate to go to an ER?]
c. Have any of these efforts changed the likelihood of the person you care for going to
the ER next time?
d. Remember, we’re talking about going to the ER for things that their primary care
practice provider could take care of, not life threatening emergencies. What would
need to change to encourage you to take the person you care for to get treated at their
primary care practice instead of going to the ER?
14. How do you think any of the primary care office changes that we have talked about have
affected the health of the person you care for?
a. In what ways?
Care Coordination
Next, we want to get your opinions about how the care of the person you care for is handled
when he/she needs to seek care from someone outside of his/her primary care practice. For
example, sometimes patients may need to see a specialist to better handle their condition—a
surgeon, heart doctor, allergy doctor, skin doctor, foot doctor, or another provider who
specializes in specific types of care.

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15. What role does their primary care practice play when he/she needs to see a specialist?
[PROBES: Do they make referrals? Do they make the appointment for the person you
care for or ask you to do it?]
a. How does this arrangement work out for you and the person you care for? In what
ways do you like it? In what ways do you dislike it?
b. Has his/her provider always played this role or is this something new? If new, when
did you notice the change?
c. Does their provider know the results of their visit with a specialist? [PROBE: Do
they refer to test or lab results or notes from the specialist during the next office
visit?]
16. The person you care for may need to get lab work done, get an x-ray, or other tests during
an office visit. How do you or the person you care for usually learn about the results of
these tests? [PROBES: Who tells you or him/her about the results? How do they contact
you or him/her? How soon do you or he/she usually find out?]
17. When the person you care for goes to his/her primary care practice for a medical visit,
does his/her provider know if he/she has visited the emergency room, been hospitalized
or had a nursing home or rehabilitation stay since their last office visit? Has this always
been the case or have you noticed any changes in the past year or so?
a. Do you think the primary care practice knows about new prescriptions or procedures
that were done? Has this always been the case or have you noticed any changes in
the past year or so? How do you think they know? Has this always been the case or
have you noticed any changes in the past year or so?
For the following questions about care managers, the language in each state protocol will be
tailored to reflect the appropriate terminology used in that state.
NC, MI, PA, NY, ME, VT: care manager; RI: nurse care manager; MN: Health Care Home
services
Some services can be provided by others, such as a care manager, social worker, or someone
else, either before or after an office visit, by phone, by email, or during a home visit. This
person may teach you and the person you care for how to take better care of their medical
condition, may have helped arrange a visit with another provider, or may have helped as the
person you care for was admitted or discharged from a hospital, ER, or nursing home.
18. Does the person you care for have a care coordinator, care manager, social worker, or
someone else who calls you or him/her every so often, or that you can call when you
have questions?
a. Is this person part of the practice staff or do they work for another organization?
b. If they work for another organization, how well does the [nurse] care manager
coordinate the care of the person you care for with their primary provider or other
staff at their primary care practice? [PROBES: Do they both seem to know what the

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other is doing for their care? Do they each let the other know when the person you
care for needs to see them?]
c. How were you introduced to the [nurse] care manager?
d. When did you begin working with the [nurse] care manager on behalf of the person
you care for?
e. How does the [nurse] care manager communicate with you? [PROBES: In-person at
the provider’s office? Over the phone?] How often do you talk with the [nurse] care
manager?
f. How did the [nurse] care manager help you? [PROBES: Has the [nurse] care
manager helped you manage care for the person you care for? Has the [nurse] care
manager called you or the person you care for after they were in the hospital or
nursing facility? Have they told you about resources that could help the person you
care for? Have they coordinated care or scheduled appointments with other agencies
or providers?]
g. If the person you care for takes medication, does the [nurse] care manager help you
understand their medication? If so, how useful is this?
h. How useful was the [nurse] care manager?
i. What did you like or not like about the [nurse] care manager?
19. Care coordinators or social workers also may help you find resources in the community
to help you in your role as caregiver. Has anyone at your primary care practice told you
about any services or support groups for caregivers? [PROBES: Support groups that
meet through the local hospital, local senior center, or through a place of worship? Online support groups? Respite services that could relieve you of your daily responsibilities
on occasion? Adult daycare options?]
a. Have you already received services or support from any of these community
resources? Which ones? How did you learn about these community resources? How
useful are these resources?
b. Has the provider of the person you care for asked about your use of any of those
community resources? Did they ask you about your experiences with these
resources?
Insert Vermont and North Carolina state-specific questions
20. Has the primary care doctor’s office invited the person you care for and/or you to provide
feedback about their office or ways they could improve your experience? For example,
were you or the person you care for asked to fill out a patient experience survey and/or
participate in an advisory council? [NOTE TO FOCUS GROUP FACILITATOR: We are
particularly interested in whether practices have gotten input from patients with a chronic
condition, such as diabetes, high blood pressure, asthma for children, or patients who
may have gone to the emergency department or been in and out of the hospital or nursing
home].

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Awareness of State Medical Home Initiative
[SOME STATES USE ANOTHER TERM FOR MEDICAL HOME. EACH STATE’S
PROTOCOL WILL REFLECT THEIR OWN TERMINOLOGY. FOR EXAMPLE,
MINNESOTA USES “HEALTH CARE HOME.”]
21. Have any of you heard of the term “medical home”? What does “medical home” mean to
you?
[Name of the state] has a plan that is designed to help primary care practices deliver better
care to their patients. The term “medical home” doesn’t actually refer to any one building or
doctor. Medical home refers to a team or network of health professionals in different
practices, hospitals, and support groups working together to provide better care to patients.
The goal of a medical home is to provide better care to their patients by improving access
and coordinating the many different kinds of health services provided by that team.
22. In [name of the state] it is called [name of initiative]. Have you heard about this
initiative? Where did you hear about it or from whom? What have you heard about it?
What is your understanding of the doctor’s participation in [name of the state initiative or
local network]?
23. Do you think that the health of the person you care for could improve under this type of
model?
a. In what ways?
b. Are there any downsides to this model, as a patient?
These are all of my questions. Is there anything else you would like to share with me in
regard to your role as caregiver and the care that the person you care for receives at his/her
doctor’s office that we haven’t already discussed?
State-specific questions
North Carolina
[Insert question after Q18]

Some services can be provided by others, such as a clinical pharmacist, either before or after
an office visit, by phone, by email, or during a home visit.
We now would like to ask about your experience with the clinical pharmacist. A clinical
pharmacist is someone who meets with patients to discuss their medications. You may have
met this pharmacist after the provider of the person you care for recommended them. Note
this is not the pharmacist who is part of your local pharmacy where you buy medicines.
1. Have you met with a clinical pharmacist on behalf of the person you care for?
If yes….
a. How did you learn about the clinical pharmacist?
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b. How did the clinical pharmacist help you take better care of the person you care for?
c. How useful was the clinical pharmacist?
d. What did you like or not like about the clinical pharmacist?
Vermont
[Insert after Q18]

1. What other experiences have you had with the services in your community that might
help the person you care for take better care of their health?
PROBES:
•
•
•
•

Healthier Living Workshops
Tobacco cessation activities such as Quit in Person, or other parts of the Quit
Network (Your Quit, Your Way, Quit On-line, Quit by Phone)
Wellness Recovery Action Plan (WRAP)—a standardized group intervention for
adults with mental illness lead by trained co-facilitators who are peers
Family wellness coaching

a. How did you learn about these community services?
b. How useful were these services?
c. Has the primary care provider asked you or the person you care for if they have used
any of those community resources? Did they ask you or him/her about their
experiences with these resources?

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