Cape Cod, Massachusetts, classified as rural by the Health Resources and Services Administration, has a diverse population and a well-established gay community. The 2004 Cape Cod Community Survey (21) found that lack of dental care ranked second out of 12 serious household issues. In another survey, PLWHA on Cape Cod identified access to dental care as their second highest need after access to benefits and public assistance (22).

We created 2 DCM positions for this study, 1 for each of 2 dental clinics associated with Harbor Health Services, Inc, which received funding from the Health Resources and Services Administration Oral Health Special Projects of National Significance. During the study period, 3 people filled the 2 positions. Two were men; 1 was Brazilian, 1 was white, and 1 was a Hispanic woman. Two were bilingual (English/Spanish and English/Portuguese). Although all had some college education, none had received medical or dental training. They were supervised by a person who had social service experience.

We used focus groups to collect data. Focus groups are especially helpful in examining nuances in attitudes, beliefs, or opinions (23). We mailed focus group invitations to everyone who had received DCM services at the 2 clinics from November 2007 through November 2009 (n = 216); 28 people agreed to participate, and 25 participated. Participants were required to be aged 18 or older, living with HIV/AIDS, and English-speaking. Using information from prior research (18–20), we drafted a focus group guide; members of a multiprofessional team that included an evaluator, a dentist, and a DCM reviewed the draft questions for appropriateness and comprehension. Questions were revised in response to feedback. Content areas (Appendix) included problems and experiences with obtaining dental care prior to having the DCM; the role of the DCM and ways of improving it; the value of having a DCM; and the effect of the DCM on oral or overall health. We collected self-reported data on sex, race/ethnicity, age, and years since HIV/AIDS diagnosis.

We held 5 focus groups from December 2009 through June 2010. An experienced focus group facilitator used recommended focus group procedures (23) to conduct all 5 groups. The University of Massachusetts Medical School Committee for the Protection of Human Subjects in Research approved study protocols and consent procedures. All participants provided written informed consent and were compensated $25 for participating. Each session was recorded digitally and lasted approximately 1½ hours.

Digital recordings were transcribed verbatim. Transcripts were coded and then imported into Microsoft Excel for sorting and cross-referencing. One investigator read the transcripts several times to identify emerging themes and to develop a coding scheme on the basis of the original research questions and spontaneous comments. Two investigators categorized textual data separately according to directed qualitative content analysis (24).This analysis uses a set of coding procedures for making replicable inferences from data and for identifying emergent themes (25).We calculated the percentage of intercoder agreement and revised the coding scheme after each round until we reached agreement (85%). Disputed responses were reviewed until coders had achieved 100% agreement. Comments expressed most frequently were identified as major themes. We used descriptive statistics to characterize the study sample; compared sex and race/ethnicity of the 25 participants with that of the 216 people eligible to participate, testing differences with the Fisher exact test; and used SPSS Statistics version 19 (IBM Corp, Armonk, New York) for these comparisons.

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 (Table 1). We found no significant differences in proportions between participants and the eligible population by sex, white versus nonwhite, or Hispanic versus non-Hispanic.

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:

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:

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).

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 (Table 2). Participants believed these qualities were not only important to the DCM position but vital to assisting people in obtaining care.

A few participants mentioned an additional potential DCM role: assisting people with travel to and from dental appointments:

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].

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:

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:

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:

Several participants mentioned the effect on their mental health and how poor oral health limited their ability to socialize:

Overall, participants felt that their improved oral health had improved their overall health.