For this project, we held six focus groups. Five included family members of elders with dementia who were currently residing in an assisted living, and one group consisted of family members whose loved one had been recently discharged from an assisted living facility. In this section of the report, we describe the "mechanics" of the study: developing instrumentation, recruiting participants, and organizing and conducting the focus groups.
We developed several types of study instrumentation, including recruitment materials, a consent form, a self-administered survey of participants, a moderator guide and structured note-taker forms.
Developing Recruitment Materials. After developing criteria for selecting sites and participants, our first step was developing recruitment materials. These included an explanation of the purpose of the study and what would be involved for the local Alzheimer's Association Chapters that chose to participate, a set of guidelines for the Chapters that specified our recruitment goals and criteria, and a fact sheet for recruiting participants. We developed drafts of these, sought and received review of these from our project officers at the Alzheimer's Association, revised them, and sent them to the local Chapters in the five sites. We then held a conference call with representatives in the five Chapters, discussing the criteria and methods we proposed. Chapter representatives made several useful suggestions about both the forms and protocols, and we made further revisions. Copies of the study explanation, recruitment guidelines, and fact sheet may be found in Appendix A.
Developing Instrumentation. Our next step was to develop instruments and protocols that would allow us to achieve the study goals. These included: (1) a consent form for participants; (2) a short self-administered survey of focus group participants; (3) a moderator guide of general topics and follow-up probes designed to facilitate and structure the discussion; and (4) structured note-taker forms. These were reviewed by our project officers at the Alzheimer's Association and modified accordingly. The revised forms and a description of the study goals and protocols were then reviewed by RTI's Committee for the Protection of Human Subjects to ensure that nothing violated the family members' rights to privacy or placed them or their loved one in the assisted living facility in any jeopardy. A copy of the consent form can be found in Appendix B.
We also developed a two-page self-administered Demographic Survey for family members. This survey asked participants 14 questions covering basic demographics, their loved one's history of using long-term care services prior to entering the current assisted living facility, the length of their loved one's stay in the current facility, the facility room type, the monthly cost, whether they provided financial support to the loved one, the monthly income of the relative in the assisted living facility, and the family member's expectation about whether the loved one would be able to stay in the facility indefinitely (i.e., would be able to age in place). In addition, we asked the participation to provide their first name so that we could associate their comments during the discussion with the types of issues they raised. The data from this survey were used to describe participants and, in some instances, to compare the responses of participants across eligibility categories.
The key instrument we developed was a Moderator Guide. This guide was used as a framework for the focus group discussions and not as a scripted set of verbatim questions. It was developed to structure the discussion and illuminate the study questions and to ensure that key topics were raised with participants during the focus group session. This guide thus included both key topics and a set of topical "probes" that were used as needed to follow-up lines of inquiry suggested by the discussion or to clarify to topic and stimulate more focused discussion. The topics in the Moderator Guide included the following:
- The kind of help or supervision the loved one received in the assisted living facility;
- Why assisted living was chosen over other alternatives (e.g., a nursing home or board and care home);
- How they selected the current assisted living facility (e.g., information sources, what they looked for; how they decided on a particular facility);
- Whether there had been changes in the loved one's care needs over the course of the stay in the assisted living facility;
- How they define "quality" and what they would to tell a friend to look for in selecting a "good" assisted living facility;
- What they would tell a friend to avoid when looking for an assisted living facility;
- Whether (and if so, how) their perceptions about quality changed over time; and
- Whether the family members believed that the residents' concept of "good quality" matched that of family members.
A copy of the Demographic Survey and Moderator Guides are included in Appendix C.
In addition, we developed structured note-taker forms that were designed to facilitate our ability to capture not only what was said but also when and how it was said (the context), whether some questions did not elicit responses and required probes or clarification, and whether there were behavioral and verbal signs of agreement or disagreement among other participants to a point raised by one participant.
2.5.2 Recruitment of Focus Group Participants
Based on our experience and that of the local Chapters, we determined that the most effective process for identifying and recruiting family members for the focus groups was to work with the Chapters and give them primary responsibility for these activities. This would give family members a clear understanding of the purpose and sponsorship of the study and a local source of information and support for those families not already familiar with the local Alzheimer's Association Chapters. Some Chapters already had identified support groups for families of residents in assisted living facilities; others had many support groups but no way of identifying those members who had a relative in such facilities. Thus, for Chapters who wanted assistance, RTI staff provided them with lists of assisted living facilities and telephone numbers in their local area. In a few cases, we also made contact with administrators of local assisted living facilities to help identify potential participants.
As noted, some Chapters had a working knowledge of chapter members who were eligible for the study. Others contacted assisted living facilities they knew to identify potential participants. Once potential participants were identified by the Association Chapters, a lead letter and a fact sheet were mailed to them. In some instances a set of screening questions were also mailed to help determine whether they were eligible for the study. In other cases, the screening was done over the phone. For those contacted by mail, if the person qualified for the study they were asked to call a Chapter representative and notify him/her of their interest in participating in the group. Once eligibility was verified, and confirmation of attendance at the group was received, Chapter representatives gave the participants details about such issues as the scheduled date, time and the location of the focus group session as well as the availability of reimbursement for transportation costs or other incentives. RTI provided a minimal payment to the local Chapters to help cover the costs they incurred in helping us with recruitment.
Recruitment Incentives for Participants. In many cases, particularly when focus groups are organized by marketing firms, financial incentives are offered to participants. Chapters felt that it was appropriate to offer participants reimbursement for transportation costs. One Chapter felt that it was also essential to offer participants an incentive payment, give the burden of travel in the large metropolitan area combined with the usual practice among other firms of providing incentives for focus group attendance. Thus, in one site we provided a $50 per person participant cash incentive. In other Chapters, they chose to give participants a gift certificate (valued at between $30 and $50). And in one Chapter, they felt offering any kind of financial incentive was inappropriate.
2.5.3 Organization and Operation of the Focus Groups
We considered appropriate organization and arrangements for the focus group sessions an important component of their success. First, it was important to hold the sessions in a place that was convenient and safe for participants and in which they would be comfortable. In four of the five sites, the Chapter offices provided conference rooms for the focus group sessions. In the fifth site, a centrally-located hospital provided a meeting room. Second, we sought the advice of the Chapters about the time of day that would be most convenient for family members. Since many worked, we started the sessions at 6:00 or 6:30 pm. In addition, we provided a light meal for all participants before the session. This gave participants time to get acquainted and time to complete the self-administered survey, as well as giving RTI staff (the moderator and note-taker) an opportunity to speak with the participants informally. They also asked each participant to read the informed consent form and complete the survey.
Each focus group consisted of 6-8 family members and lasted approximately two hours. Focus group staff included a moderator and a note-taker. The moderator led the session. She started by introducing herself and the note-taker, explaining the purpose of the study and how the focus group session would be conducted, and going over the material contained in the informed consent to ensure participants understood their rights and consented to having the sessions tape-recorded. She then asked the participants to introduce themselves and invited them to tell the group something about their loved one who was in an assisted living facility. The moderator then introduced the first topic, and group discussion began.
The sessions were tape-recorded, and the note-taker also recorded key comments, contextual notes, and so on. The recordings were used so that all important comments could be captured verbatim and coded for analysis. The notes of the note taker were used as a backup in the event the tape recording was unclear or the recorder failed for some reason, as well as providing information the recording could not capture, such as the identity (by first name only) of the speaker so that the comments could be subsequently associated with demographic characteristics of the speaker or with the characteristics of the relative in the assisted living facility. The recordings were later transcribed and used to generate the summary reports from which the entire report is written. We also used "flip charts" to record key issues or topics mentioned by the participants. As participants raised topics and added responses to discussed lines of inquiry, the moderator created a list on the flip chart of what participants said. These mainly concerned the topics explicitly related to how participants defined quality of care. The result for each group was a 2-3 page list of elements of quality, from the families' perspective. At the end of the session, the moderator asked the participants to review the issues they identified as key to good quality in assisted living and, using round colored stickers ("dots") placed next to items on the list, to indicate the two items or ideas they felt were the most important.1
At the conclusion of the focus group session, we conducted a "debriefing" with staff of the local Chapter. This was done so that we could ask questions about any seemingly idiosyncratic issues or topics that were raised during the focus group session (e.g., several mentions in one site of a particular administrator and her philosophy of assisted living in the local community) and to place the group's discussion in context of any special situations or issues specific to a given site.