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Perceived Barriers and Potential Strategies to Improve Self-Management Among Adults with Type 2 Diabetes: A Community-Engaged Research Approach

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Abstract

Objective

Type 2 diabetes (T2D) is a leading cause of morbidity and mortality that disproportionately affects adults living in urban areas in the USA. Our goal was to actively engage community members in research to identify strategies to improve T2D self-management in an urban community in Baltimore, MD.

Methods

We partnered with the Johns Hopkins Community Research Advisory Council to establish our stakeholder advisory board—the Diabetes Action Board (DAB). In response to input from DAB members regarding the best approaches for conducting community-centered T2D research, we conducted three 90-min focus groups of local adults living with T2D to identify ways to improve self-management. DAB members were involved in each stage of the research, including development of the protocol and materials, participant recruitment, and interpretation and dissemination of findings.

Results

In total, 24 adults with self-reported T2D (75 % participation rate; 79 % female) residing in the local area participated in focus groups. Participants reported that barriers within their daily home and work environments, inadequate neighborhood resources, and suboptimal healthcare quality hindered their self-management. Reported strategies that may help to improve self-management included social support from family members, providers, and community members; improved access to healthy food; and wide availability of free or low-cost T2D educational materials and classes within the local area.

Conclusion

Our study demonstrates a successful mechanism for engaging community members in the design, implementation, and dissemination of T2D research. This research approach was beneficial for building a sustainable partnership to support future work in the local community.

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Acknowledgments

The authors sincerely thank the Johns Hopkins Institute for Clinical and Translational Research Community Research Advisory Council diabetes subcommittee and members of our Diabetes Action Board for their valuable contributions and engagement in the research study. The authors also thank the respondents who participated in the study.

Author contributions

TSP, TJL, LB, JBS, CE, DRL, and JFPB were responsible for defining the goals of the manuscript and for writing the manuscript. TJL, LB, CE, and JFPB were responsible for participant recruitment and data collection. TSP, TJL, LB, and JFPB were responsible for data analysis and interpretation of the results. TSP, TJL, LB, JBS, CE, DRL, and JFPB contributed to synthesizing the discussion and conclusions.

Author information

Authors and Affiliations

  1. Department of Epidemiology, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA

    Tanjala S. Purnell

  2. Department of Surgery, Johns Hopkins School of Medicine, Baltimore, MD, 21205, USA

    Tanjala S. Purnell

  3. Center for Health Services and Outcomes Research, Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA

    Tanjala S. Purnell, Lee Bone, Jodi B. Segal & John F. P. Bridges

  4. Armstrong Institute for Patient Safety and Quality, Johns Hopkins School of Medicine, Baltimore, USA

    Thomas J. Lynch

  5. Department of Health Behavior and Society, Johns Hopkins Bloomberg School of Public Health, Baltimore, USA

    Lee Bone & John F. P. Bridges

  6. Community Research Advisory Council, Research Participant and Community Partnerships Core, Johns Hopkins Institute for Clinical and Translational Research, Johns Hopkins School of Medicine, Baltimore, USA

    Lee Bone & Crystal Evans

  7. Department of Medicine, Johns Hopkins School of Medicine, Baltimore, MD, USA

    Jodi B. Segal

  8. Department of Family Medicine and Population Health, Virginia Commonwealth University, Richmond, VA, USA

    Daniel R. Longo

Authors
  1. Tanjala S. Purnell
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  2. Thomas J. Lynch
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  3. Lee Bone
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  4. Jodi B. Segal
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  5. Crystal Evans
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  6. Daniel R. Longo
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  7. John F. P. Bridges
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Corresponding author

Correspondence to Tanjala S. Purnell.

Ethics declarations

The study was approved by the Institutional Review Board at the Johns Hopkins Bloomberg School of Public Health and was performed in accordance with the ethical standards of the Declaration of Helsinki. All participants provided their voluntary and informed consent to participate in the study. This work was supported through the Patient-Centered Outcomes Research Institute (PCORI) Methods Program Award (ME-1303-5946) titled “Advancing stated-preference methods for measuring the preferences of patients with type 2 diabetes” and through the Johns Hopkins-FDA Center for Excellence in Regulatory Science and Innovation (CERSI) (1U01FD004977-01). The authors (Tanjala S. Purnell, Thomas J. Lynch, Lee Bone, Jodi B. Segal, Crystal Evans, Daniel R. Longo, and John F.P. Bridges) have no competing financial or non-financial interests to disclose.

Appendices

Appendix 1: Public Lay Summary—Local Community Engagement in Diabetes Research

Diabetes is a major health problem that affects the lives of many people, including adults living in our community. Members of our community who want to help improve diabetes outcomes have partnered with researchers at Johns Hopkins University in a 3-year project funded by the Patient-Centered Outcomes Research Institute (PCORI). One goal of the project is to demonstrate how community members can help improve diabetes research. A committee called the Diabetes Action Board (DAB) is working with researchers to guide the project. The DAB includes local community members working with the Johns Hopkins Community Research Advisory Council (C-RAC), community leaders, healthcare providers, adults living with type 2 diabetes (T2D), and researchers. DAB members are very interested in improving the lives of people living with T2D and have valuable experiences working in the local community.

DAB members are actively involved in all phases of the project, including the development of focus groups held recently in the local community. A focus group is a type of meeting where people are asked to share their opinions, beliefs, and attitudes about a particular topic with researchers and other group members. The goal of our focus group meetings was to give “a voice” to community members living with T2D so they could share their daily experiences and describe factors that influence their abilities to manage their condition. The DAB members worked with Johns Hopkins researchers to help spread the word about the project in the local area by putting up flyers in the neighborhood; making announcements at events, churches, senior centers, and markets; and talking with people they thought might be interested in participating.

We thank the 24 women and men living with T2D in our community who participated in the study. In total, there were three focus group meetings that lasted 60–90 min each. Participants were asked to share their first name only 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 might negatively impact their abilities to manage their T2D (barriers) and also suggested things that help to improve their abilities to manage their T2D (facilitators). They also talked about some of their personal concerns related to T2D. The barriers, facilitators, and concerns that participants thought were important to their T2D management are described below.

Barriers to diabetes management:

  • Limited neighborhood resources (poor availability and high costs of healthy food for people living on a fixed income)

  • Daily challenges and temptations in home/work environments (may affect patients’ abilities to eat healthy foods and participate in regular physical activity)

  • Poor healthcare quality (high cost of medical care and poor provider communication).

Facilitators of diabetes management:

  • Social support from others living with diabetes (family members, co-workers, and neighbors—helps to reduce feelings of loneliness)

  • Availability of diabetes education (participation in free/low-cost support groups/self-management 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 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 valuable information that members of our community provided during focus group meetings will be used to help guide researchers at Johns Hopkins University as they work to improve the lives of people with diabetes. This is very important information that can also be used by other researchers who are interested in improving diabetes outcomes. At the end of each focus group, many participants also requested additional information about the project and expressed interest in receiving a summary of the main 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.

Appendix 2: Focus Group Moderator’s Discussion Guide

  1. 1.

    Would anyone like to share your experiences living with diabetes? What are some of the daily decisions you make to help control your diabetes?

    Aide-memoire:

    • Managing your food and exercise

    • Taking medications

    • Other behaviors that keep you healthier.

  1. 2.

    What are your personal priorities in your diabetes self-management? These may or may not be your physician or nurse educator’s priorities, but we are interested in your personal priorities. What is important to you? Of all your personal priorities, what is most important?

    Aide-memoire:

    • What are you willing to give up for better self-management?

    • What are you not willing to give up for better self-management?

    • Do you think your priorities align with your doctor’s priorities?

  1. 3.

    What are some of the things that, and who are some of the people who, help you manage your diabetes treatment and lifestyle choices on a day-to-day basis?

    Aide-memoire:

    • Are there people who support your treatment and lifestyle choices?

    • If so, how are they involved in your diabetes management?

  1. 4.

    Are there certain things or people who make it more difficult for you to manage your diabetes treatment and make good daily lifestyle choices?

    Aide-memoire:

    • If so, please explain how they make it difficult to manage your diabetes?

    • What are some obstacles to sticking with your diabetes treatment plan?

    • Who distracts you from your diabetes treatment plan and making good lifestyle choices (diet, medication, sleep, exercise, etc.)?

  1. 5.

    Sometimes in our studies, we focus on identifying people’s worries. What are some of your worries or concerns about your diabetes or the treatment?

    Aide-memoire:

    • Potential disease progression and complications

    • Day-to-day lifestyle choices

    • Risks and side effects of treatments

    • Initial concerns that arose when you were first diagnosed.

  1. 6.

    What do you think are the main benefits of sticking with your treatment and making positive lifestyle changes?

    Aide-memoire:

    • Minimization of disease progression

    • Healthier living

    • Feeling better

    • Receiving positive feedback from your support.

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Purnell, T.S., Lynch, T.J., Bone, L. et al. Perceived Barriers and Potential Strategies to Improve Self-Management Among Adults with Type 2 Diabetes: A Community-Engaged Research Approach. Patient 9, 349–358 (2016). https://doi.org/10.1007/s40271-016-0162-3

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