We conducted three focus groups with an interdisciplinary, multicultural group of healthcare professionals at MUSC to determine their perceptions about barriers to living organ donation. Participants were recruited from among transplant center staff, who were informed by memo and word of mouth that three focus groups would be held at different times and dates over the course of two months. The memos stated that focus groups would be held to discuss the living kidney donation program and that participation was voluntary. Participants were not told that we were particularly interested in surveying their perceptions of the barriers to living kidney transplantation among African Americans.
The program coordinator handled the logistics of the sessions, such as recruiting, making follow-up telephone calls, and providing an appropriate environment and equipment for the groups. During recruitment, efforts were made to balance the professional disciplines across the groups, with each group having all aspects of the transplant center healthcare team represented as much as possible (nephrologists, transplant surgeons, nurse coordinators, transplant pharmacists and other personnel). The participants in this study included a diverse work group of healthcare professionals with broad domestic and international training and experience in living kidney transplantation. The participants also have many years of experience in working with potential recipients and donors in hospitals and other settings, giving them insights into barriers to living kidney donation. Transplant coordinators often travel to other sites in South Carolina to offer educational programs for potential recipients and donors. The number of participants in each group was limited to seven people. The MUSC Institutional Review
Board approved all aspects of this investigation, and the study adhered to the tenets of the Declaration of Helsinki.
Focus groups were planned and facilitated by an African American and a Caucasian, both with focus group expertise. Based on their experience, the focus group literature and suggestions from a consultant, facilitators developed a script, including the questions and prompts or probing questions. This was to ensure all groups were given the same introduction and asked the same questions. Questions dealt with the general concerns of all potential donors and specific concerns and perceived barriers for African-American donors. Facilitators did not start with specific questions about barriers because they wanted to see what participants spontaneously answered. However, prompts and probing questions did address specific barriers (Table 1).
Table 1. Focus group script
Please tell us your fictitious name, occupation and role within the transplant division.
1. A. How do you think having a kidney transplant aftects a person’s life?
(Clarify positive and negative ideas as they are heard, then summarize and probe for anything further)
Prompt: Personal experience (i.e., friends, family members, etc.) B. How did it affect their lives? Describe good/bad and reasons.
2. What concerns do you think surround potential donors?
Probes: Pain, financial costs/insurance coverage, time away from work, distrust of medical system, attitudes towards hospitals/doctors, etc.
3. Are there different concerns for potential donors who are African American? Probes: religious concerns, same ethnic group coordinators and role models.
4. What would potential donors need to know before making a decision? Probes: Medical procedures, where to go, who to contact, support issues, etc.
5. Describe some ways that this type of information (discussed in #4) might be best communicated to potential donors.
Probes: Format of materials (public service announcements, print, billboards, etc.) Communication channels (community agencies, churches, stores, doctors’ offices, etc.)
6. What strategies should be used to recruit potential donors? Closing Question:
7. Is there anything else you would like to talk about?
Focus groups were offered at three different times on different dates in the MUSC Transplant Center. Holding focus groups in a meeting room with a round-table guaranteed eye contact and inclusion of all participants. During the introduction, the African-American facilitator asked participants to use fictitious names during the session for transcription, and participants consented to audiotaping the session. Two tape recorders (transcribers) were used. Participants completed questionnaires about their demographic information. The African-American facilitator led the session, following the script, asking the questions and occasionally probing for clarification. The white facilitator further queried the participants during the discussion, ran the tape recorders and took notes. At times during the interaction, the primary facilitator summarized the main points and asked for confirmation or clarification. Each session lasted approximately 90 minutes.
A transcriptionist transcribed, compared and compiled the recordings from both tape recorders into one official transcript for each focus group session. Both facilitators reviewed the final transcripts to ensure accuracy. Three data specialists and the facilitators independently analyzed the transcripts to identify recurrent themes. In reviewing the transcripts, they looked for key phrases and statements.