Almost all (23/25) participants described themselves as non-Hispanic white; 24 were men; mean age was 49.3 years. Of the population eligible to participate, 86% were male; 85%, non-Hispanic white; 9%, non-Hispanic black (). We found no significant differences in proportions between participants and the eligible population by sex, white versus nonwhite, or Hispanic versus non-Hispanic.
Selected Characteristics of Focus Group Participants and Population Eligible to Participate, Study on Dental Care Management Among People Living With HIV/AIDS, Cape Cod, Massachusetts, 2010a
Experiences before receiving DCM services
Participants identified 2 major barriers to obtaining dental care before having a DCM: lack of dental coverage and lack of dental providers. One participant said, “I was always feeling that I was on my own. I didn’t have insurance that covered dental ever, so it was sort of like I was in charge of calling for a cleaning if I had the money” (Participant B, Group 1).
Many participants discussed the need to travel several hours (4 to 6 hours round trip) to get dental care:
Well, there was very little . . . it was still back then, here on Cape Cod, there was very, very little available for Ryan White [Ryan White Dental Treatment Fund pays for dental services for HIV clients who cannot otherwise afford dental care] on the Outer Cape or on the Mid Cape, so you just schlepped, you just went into the city proper, you went into Boston. (Participant A, Group 4)
When help was available, it most often came from medical case managers. That assistance, however, was often limited to making referrals and did not always result in dental care: “And if you have a medical case manager, they can help you get dental care sometimes, if they can find someone to take your insurance if you have MassHealth [Massachusetts Medicaid coverage]” (Participant C, Group 1).
At least 1 participant in every group reported negative experiences with previous dental providers, including receiving poor care, feeling uncomfortable because of HIV status, and receiving untimely care:
I went to [clinic name] in [city name] because you get a discount because you go with a student. The doctors there are teaching the students and it was a horrifying experience. I had my wisdom teeth pulled and there were like 7 people there and they didn’t anaesthetize me and my friend didn’t stay, so they had to just inject me and half of the time it was just wearing out. And the doctor was just the worst training doctor you could probably ever imagine getting and I was just like screaming, you know, and the students were looking and I’m screaming and I had to pull the doctor’s hand away and I was just “What are you doing?” (Participant C, Group 2)
Then I moved up to [city name] with my uncle and up there I couldn’t get any help whatsoever; not for HIV or anything, for absolutely anything, and I got to the point where I pretty much ended up in a nursing home. You know, I was down to 134 pounds. (Participant D, Group 5)
Participants discussed feeling uncomfortable because of their HIV status: “I can’t prove or disprove about the [HIV] status, but in past I have gotten that feeling. You get that, I don’t know how to explain it. You sort of felt, just felt uncomfortable” (Participant B, Group 5); “Well, it becomes important if you feel judged. And I gotta say, that Dr [dentist name], I just don’t feel comfortable with him” (Participant B, Group 4).
Role of the DCM
Participant descriptions of the DCM role sorted into 6 categories: 1) being accessible and available; 2) being knowledgeable about clients; 3) being knowledgeable about insurance; 4) being empathetic; 5) increasing access to care (ie, scheduling appointments, making appointment reminders, and assuring continuity of care); and 6) providing comfort (). Participants believed these qualities were not only important to the DCM position but vital to assisting people in obtaining care.
Positive Characteristics Identified in the Roles of Dental Case Managers (DCMs), Study on Dental Care Management Among People Living with HIV/AIDS, Cape Cod, Massachusetts, 2010
A few participants mentioned an additional potential DCM role: assisting people with travel to and from dental appointments:
When I have medical appointments, I can go through the ASG [AIDS Support Group] and get the B bus. But I don’t know if that should be included in the dental [case manager role]. Let’s say, I don’t have much medical, right now it’s more focused on dental, but I still need rides to the [dental clinic] I think. Maybe, to help answer your question of what should be included, maybe that. (Participant C, Group 5)
Only 1 participant mentioned an unmet expectation: “What I’m thinking now is if my dental case manager were to ask me how happy I am with my dental providers, with my dentists” [Participant B, Group 4].
Value of the DCM
All participants mentioned the value of the DCM; one stated, “I can’t see how a dental practice right now could function without a [dental] case manager” (Participant F, Group 1). Many cited previous difficulties with obtaining dental care, including the complexities of gaining access:
You need someone to centrally coordinate. If you don’t know where to go or what to do, whatever the case may be, then just like you say, you go or you call when you don’t have any idea, so that one person coordinates what is going on or gives direction on what place to go, and this eases the peace of mind first of all. (Participant A, Group 1)
Another participant discussed the value of the position as the coordinator of dental care: “The [dental] case manager is like the overseer, the engineer making sure that not only are we getting the care we need now but we’re also getting the future stuff taken care of” (Participant A, Group 5).
All participants believed that the DCM would benefit other vulnerable populations; one stated:
I can’t imagine how it wouldn’t benefit. I remember when my mother was at the end of her life and when she was in her 70s, especially seniors, where there is so little. I mean, we take such bad care of our elderly. I mean, just in that aspect alone. But I think other populations of the community . . . I can’t imagine how it wouldn’t be helpful. (Participant A, Group 4)
Effect of DCM on oral health and overall health
Many participants noted changes in their oral and overall health after the DCM helped them to obtain regular dental care. Changes in oral health often involved the alleviation of pain: “Before this I had a half a mouth of teeth for a half a year before I met these dental case managers, so I was suffering, I was slowly losing weight, you know” (Participant D, Group 5). Another participant discussed changes not only in pain reduction but also in laboratory values:
Well, it’s definitely helped me. Because when they did the top teeth, I guess I had an infection in there probably for about a year and a half. So, my T cells once this was all done jumped 100 points. So yeah, and I feel a lot better. Now that I don’t have any pain, I’ve been in pain for like, I don’t know 8 years. I was used to it, you know. (Participant B, Group 2)
Several participants mentioned the effect on their mental health and how poor oral health limited their ability to socialize:
But the whole idea that like when I didn’t have teeth for a while, I couldn’t go to a restaurant, I couldn’t even have a deli sandwich. I’d sit there for 45 minutes, it would take you 20. So, has your health changed? Health, mental health, physical health, you know — everything. (Participant E, Group 5)
Overall, participants felt that their improved oral health had improved their overall health.