Improving Caregiver Outcomes Through Structured Support Via Military Caregiver Peer Forums

Participant Protocol

We’re interested in the PEER forums at this installation, and want to understand how participants get connected with the program, why you went or go, and what effects it has had on you. We’re also interested in who the participants are, so we have some questions about you and the person you provide care for.

To get started, it would be helpful for me to hear more about what happens when you go to a PEER

forum meeting.

1. When and where does the forum meet?

a. Probe for: frequency, regularity, duration of sessions

b. Probe for proximity/convenience of meeting time/space: Is the meeting place and time convenient?

2. How did you connect with the PEER forums? (probes: Where do they get information?

Who referred them?)

a. From other people you’ve talked to, do you think this is common, to get

connected with PEER forums by [method]?

b. If referred: Were you referred in a timely manner? That is, do you think someone should have told you about PEER forums earlier?

3. [If needed?:] How often does the group meet? How often do attend?

4. We’re interested in what happens at a typical meeting. a. How many caregivers attend?

b. Is it a similar group of people over time, or different people each week?

c. Do the groups follow specific curricula?

d. Does the facilitator present the topics for discussion or do they come from the participants? Some of both? If topics come from the participants, how is your input solicited?

5. Can you give me some examples of recent discussion topics?

6. We're also interested in the types of interactions that happen between participants during the session.

a. First, is there a lot of interaction between participants?

b. Can you give me some examples of how you interact with each other?

c. [If needed] Do you find these interactions – like the [example] that you described

-- helpful? Would you like there to be more or less time for group interaction and sharing?

7. Do you know of participants interacting or developing relationships outside of the PEER forum setting? (If so, probe: did people meet at PEER forums, know each other before and come together, what kind of interactions have outside of group, etc.)

That was all a very helpful description of what happens at the session. Now I have a few questions about you, as a caregiver, and how you compare with other caregivers who attend the PEER forum.

8. First, who do you provide care for?

a. How is that person related to you?

b. Is that person an active duty Service member?

c. What conditions or injuries does that person have that makes him/her require care? What types of things does this person need help with? (e.g., probe for help needed with activities of daily living [eating, bathing, dressing, toileting, transferring], instrumental activities of daily living [food prep, medication management, housekeeping, managing finances, using a telephone, transportation], and other (support/help with: decision-making, memory loss problems, motivating to get to medical appointments/rehab, substance use problems or mood disorders, sleep disorder, chronic pain)

d. What stage of treatment is your [care recipient] at? (e.g. acute, post-acute, rehab, separating, etc.)

9. When you think about your situation, providing care for [fill in: e.g. your husband who is recovering from a TBI], how does that compare to the other people in the group? (probe for who are people in group, who are they providing care for, what types of conditions/injuries, types of help provided)

a. It sounds like there’s [not a lot/some/a lot of] variation in people’s caregiving situations. Do you find that helpful to the group? Is it challenging in any way?

b. Can you recall any people who have tried out PEER forums but felt like they didn’t fit in there and so they left the group? Who/Why?

I want to go back to how you got connected to PEER forum and why you started going.

10. Why did you start going to the PEER forum group? What were you hoping to get out of it?

11. Was it different than you expected? (or different than it was described by referring entity) How so?

12. We’re curious about what other resources you and your family use, both through this installation and non DoD resources.

a. Do you participate in other caregiver support groups or get help with caregiving from other sources?

b. Do you see a counselor outside of the PEER forums?

i. If yes: Is this a MFLC or another counselor?

c. What about your [care recipient]? Does he/she participate in any support groups or receive support services?

13. [If uses other programs in previous question:] Is the type of support you get through

PEER forums different than through these other sources?

a. If so, how?

b. Are there ways in which the PEER forum is more helpful than these other sources?

c. Are there ways in which the PEER forum is less helpful?

14. Is the PEER forum similar to other resources that you know about, but that you haven’t used?

15. As you probably know, the PEER forums are designed to foster a safe space for caregivers, in part by promising confidentiality. How important is the confidentiality of the group to you?

16. At some point in the future, the Department of Defense may want to do a formal evaluation of the PEER forums, to understand if and in what ways they are helping caregivers.

a. One way to do this would be to follow group participants over time, like from when they are referred to PEER until maybe after they had attended a few sessions, then check in to see how they doing with a survey or a short interview. As a participant, do you think that type of evaluation would be problematic or face any barriers? If so, why/what barriers?

b. Another way to evaluate the quality of the PEER sessions in particular would be

to have researchers observe sessions – not participate, but sit in the room and take notes on how well the MLFC is facilitating the group. Do you think that would be objectionable to participants?

17. What effect do you think attending PEER has had on you?

a. How do you think it’s had that effect? (e.g. what piece of PEER: facilitator, other people, learning new information, getting a break/respite, feeling less isolated)

18. Have you considered not going any more? OR Why did you stop going?

19. Is there anything you’d change about the program that would make it more effective in

helping caregivers?

Finally, is there anything else you would like us to know about military caregivers and the support they could use most from DoD? [Thank and end.]

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