Public Lay Summary - Focus Group Methods and Results
Tanjala S. Purnell, Thomas J. Lynch, Lee Bone,
Jodi B. Segal, Crystal Evans, Daniel R. Longo, John FP Bridges
This summary report is part of a three-year project funded by the Patient-Centered Outcomes
Research Institute (PCORI) that aims to better understand people’s healthcare priorities and
demonstrate how local communities can help guide research. Adults living with type II diabetes
and local community members are actively involved in all phases of the project, in particular by
helping to improve understanding of the illness, how patients make sense of living with it, and
what things they value most. The report describes findings from focus groups held recently in
the East Baltimore area. A focus group is a form of research where people are asked to discuss
their opinions, beliefs, and attitudes about a particular issue with other group members. The
focus groups for this part of the project were held to give ‘a voice’ to people diagnosed with type
II diabetes so they could describe their experiences of having the illness and what it means to
them and their families.
A committee called the Diabetes Action Board (DAB) is guiding the project. The DAB is broadly
representative and includes adults with type II diabetes, local and national community leaders,
health professionals, advocates, professional funders and policy-makers. The members of this
board are very interested in diabetes and have much valuable experience in community work.
The DAB worked with a local sub-committee to assist in recruiting adults with type II diabetes
who were willing to take part in the project by putting up flyers in community areas, making
announcements at several local community events (churches, senior centers, markets) and
talking with people that they thought might be interested in participating.
Two focus groups were held at the Johns Hopkins School of Public Health and one at
Shepherd’s Clinic, and they lasted between 60-90 minutes each. In total, 24 adults (mainly
females) with type II diabetes who live in the local community participated. Participants were
only asked for their first name to help ensure their privacy. These meetings were recorded and a
member of our research team wrote notes about what was discussed.
During the focus groups, participants gave their opinions about the types of things they feel are
important to adults living with diabetes and suggested ways to improve diabetes management.
They also talked about some of their personal concerns relating to the illness. The factors that
participants thought were important to their diabetes management are described below.
Barriers to diabetes self-management:
•
Limited neighborhood resources (poor availability and high costs of healthy food for
people living on a fixed income)
•
Daily obstacles and temptations in home/work environments (may affect patients’
abilities to maintain a healthy diet and engage in physical activity)
Advancing stated-preference methods for measuring the preferences of patients with type 2
diabetes
•
Suboptimal healthcare quality (high cost of care and poor communication with
doctors)
Facilitators of diabetes self-management:
•
Social support from others living with diabetes (family members, co-workers, and
neighbors – helps to reduce feelings of isolation)
•
Availability of diabetes education (participation in free/low-cost support groups/selfmanagement classes)
•
Support from healthcare providers (having a trustworthy doctor who listens and
treats patients and family members as partners in medical decisions)
Personal concerns related to diabetes self-management:
•
Cultural norms and health-related views in the local community (may impact their
willingness to help manage their diabetes)
•
Impact of a diabetes diagnosis on family members (concerns about diabetes related
disabilities and premature death)
•
Social stigma related to diabetes (worries that others will believe that diabetes was
“their own fault” due to them living an unhealthy lifestyle)
The information that members of the local community provided will be used to help guide
researchers at Johns Hopkins University to develop a national survey of people with diabetes.
This is very important information that can also be used by other researchers who are interested
in diabetes in the future. At the end of each focus group, many participants also requested
additional information about the project and expressed a keen interest in meeting again to
discuss a summary of the findings. This public summary is one method we are using to share
the study results with focus group participants and other members of the local community.
Advancing stated-preference methods for measuring the preferences of patients with type 2
diabetes