Perceived Barriers and Potential Strategies to Improve Self-Management Among Adults with Type 2 Diabetes: A Community-Engaged Research Approach
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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.
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.
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.
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.
KeywordsFocus Group Focus Group Participant Community Stakeholder Focus Group Session Interpretive Phenomenological Analysis
Key Points for Decision Makers
This paper provides important qualitative evidence on the benefits of engaging community members in the design and implementation of community-centered type 2 diabetes research.
Multiple factors influencing patient self-management of type 2 diabetes were identified, including perceived barriers and potential strategies to improve self-management.
We demonstrate the value of a community-engaged research approach in helping to build a sustainable partnership to support future work in the local community.
Diabetes is a significant public health problem worldwide, and in the USA, it affects approximately 29.1 million Americans (9.3 % of the population), including an estimated 21.0 million diagnosed cases and 8.1 million undiagnosed cases [1, 2]. Type 2 diabetes (T2D) accounts for approximately 90–95 % of adult cases of diabetes and disproportionately affects racial and ethnic minorities, older adults, and people living in low socioeconomic areas [1, 3]. T2D is a leading cause of morbidity in the USA and is associated with high costs of medical care, disability, and premature death [1, 2].
T2D is a particularly complex condition to manage because of the wide range of medication alternatives with varying rates of effectiveness and side effects . Despite wide availability of efficacious pharmaceutical and behavioral (e.g., diet and physical activity) therapies, many patients with T2D experience poor glucose control and are at increased risk of complications, such as cardiovascular disease, retinopathy, kidney failure, amputation of limbs, and macrovascular disease [5, 6, 7, 8]. Effective treatment and sustained management of T2D requires active patient involvement to have a meaningful impact on improving glucose control and minimizing complications .
The importance of patient-centeredness in the management of T2D is now widely accepted [9, 10, 11, 12, 13, 14]. Leading professional societies, such as the American Association of Diabetes Educators, have also acknowledged the vital role of patients’ local communities, including their physical environments (e.g., availability of healthy foods, neighborhood poverty, crime rates) and social networks (e.g., family members, friends, co-workers), in contributing to cultural norms and patients’ willingness and abilities to engage in self-management behaviors, such as healthy eating and physical activity [9, 11, 13]. In addition, patient and community stakeholder engagement in translational research has increasingly been recognized as significant for enhancing the scientific research approach, empowering affected populations, and increasing the likelihood that successful interventions will actually be implemented . However, efforts are needed to better understand the most effective approaches for engaging diverse patients, community members, and other key stakeholders in all phases of T2D research, from the study conception/design phase to the study implementation and dissemination phases.
2.1 Study Goals
The primary goal of this study was to involve diverse stakeholders in the design, implementation, and dissemination of T2D research. We sought to demonstrate an effective approach for engaging community members in T2D research to help identify strategies to improve patient self-management.
2.2 Overview of How We Engaged Community Stakeholders
Chronology of Community Stakeholder Involvement in the Research Study
Members of the Johns Hopkins Community Research Advisory Council (C-RAC) reviewed the initial research proposal, and the study principal investigator requested feedback on the research questions and community engagement plan. C-RAC members were asked to respond to the following questions:
Does the study make sense?
If the study is funded, are you willing to meet periodically to discuss the study?
C-RAC members provided the following feedback:
C-RAC members stated that the research question made sense and that they were supportive of the project
If the study was funded, members would be willing to be engaged; however, the research investigators would need to provide additional training and education regarding patient-centered research, and clearly describe how the C-RAC could contribute to the study
C-RAC members requested an opportunity to review and help shape the patient engagement plan for the study
Community member feedback about the study was incorporated into the study grant application and C-RAC members were invited to serve on the study’s advisory board
The study was funded, and the study principal investigator incorporated the following changes to the community engagement plan based upon stakeholder input:
Instead of establishing 2 boards (a local and national board), the study advisory board would consist of a combined Diabetes Action Board
To ensure that the board had local representation, 5 members of the C-RAC agreed to serve on the Diabetes Action Board
2 study team members would serve as liaisons coordinating the C-RAC’s involvement on the project
The Diabetes Action Board held its first meeting. Local community members serving on the board agreed to help guide efforts to reach patients within the local community with type 2 diabetes. In addition, members of the Diabetes Action Board suggested that qualitative focus groups would be a great mechanism to engage local community members in diabetes research
The study principal investigator requested that local community members on the Diabetes Action Board help recruit participants for focus groups scheduled in October and November 2014
Research team members reported that 32 potential participants expressed interest in the focus groups, and the majority of them were recruited through the Diabetes Action Board member outreach
A research investigator reported preliminary findings of the focus groups at the C-RAC meeting
A description of the C-RAC involvement in Diabetes Action Board and the focus group study was publically shared in the Johns Hopkins Community Pulse Newsletter
The study principal investigator asked whether the proposed research study design seemed relevant and feasible and also gauged whether C-RAC members would remain engaged if the study was funded. Members of the C-RAC stated they were willing to remain engaged in the study if the following requirements were met: (1) research investigators provide community members with additional education and training in patient-centered research methods, and (2) research investigators explicitly define what roles the community stakeholders would be expected to fill in the study.
After receiving grant funding, research investigators formally partnered with Johns Hopkins C-RAC members to establish a local and national stakeholder advisory board—the Diabetes Action Board (DAB). The DAB included local community members identified through the partnership with the C-RAC and also national stakeholders (e.g., researchers and members of professional societies) who were interested in joining the study’s advisory board . In general, DAB members consist of diverse stakeholders, including patient advocates, community members, leaders of local community organizations, healthcare providers, representatives of professional societies, and researchers .
2.3 Types of Community Stakeholder-Engaged Activities
In response to input from DAB stakeholders regarding the best approaches for conducting community-centered T2D research, we conducted three focus groups to identify perceived barriers and potential strategies to improve self-management of T2D among adults living in the local area [19, 20, 21]. To inform the development of the focus groups, DAB members provided critical feedback about the study design, protocol, and materials. As highlighted in Fig. 1, DAB members also took a lead role in helping to recruit potential focus group participants, which included working with researchers to post flyers in the local neighborhood (including at the market, churches, public housing units, and senior residential apartments), sharing flyers at local events, and recruitment through personal communication. In accordance with CBPR principles, DAB members also played a key role in the dissemination of study findings, including the distribution of a public lay summary (“Appendix 1”).
2.4 Focus Group Sessions and Analysis
Focus groups were held in Baltimore, Maryland, in October and November 2014. Each focus group lasted between 60 and 90 min. All English-speaking adults living in the local community who self-identified as being diagnosed with T2D were eligible to participate. A structured moderator’s guide was used to facilitate focus group discussions (“Appendix 2”). An experienced moderator conducted each focus group, and a trained researcher took detailed field notes. Each focus group session was audio-recorded, and the recording was destroyed after transcription. All participants provided their voluntary, informed consent and agreed to the sessions being audio recorded. Participants were informed about the purpose of the study, its potential risks and benefits, and informed that the views they expressed would remain anonymous but could be used in the dissemination of findings. Participants were offered US$25 gift cards and parking vouchers. The Institutional Review Board at the Johns Hopkins Bloomberg School of Public Health approved the study protocol and materials.
Data were analyzed using Interpretive Phenomenological Analysis (IPA) to better understand how participants “make sense” of their daily experiences managing T2D and their perspectives about what community factors are most influential in their self-management behaviors [22, 23, 24]. We chose the IPA qualitative approach for our study because it involves detailed examination of how participants are perceiving their daily experiences; a major strength of this approach is that it allowed us to explore participants’ personal perceptions of their T2D self-management by utilizing a dynamic research process [22, 23, 24]. Audio recordings from each focus group were transcribed and subjected to thematic analysis. Experiential key themes from the sessions were identified and extracted, and field notes were reviewed. Two independent co-investigators reviewed transcripts and coded them for thematic content. A preliminary taxonomy consisting of common themes relating to T2D self-management was developed using feedback from the first two focus group sessions [20, 21]. During the final focus group, this preliminary taxonomy was used to critically examine the initial themes in more detail. No further sessions were scheduled, because of the lack of emergence of new major themes in the third session. Preliminary results were shared with DAB stakeholders, and themes were refined based upon DAB stakeholder input. Representative quotes were extracted to illustrate each theme and dimension [22, 23, 24]. The RATS Qualitative Checklist , which emphasizes the relevance of the study question, appropriateness of the qualitative method, transparency of study procedures, and soundness of the interpretive approach, was used to guide the reporting of study procedures and findings.
3.1 Study Participants and Neighborhood Characteristics
Thirty-two adults residing in the local neighborhood contacted research investigators and/or DAB stakeholders expressing interest in the study. Socioeconomic characteristics of the local neighborhood where most participants reside include a median annual household income of about US$30,000, with approximately 40 % of households earning a median income of less than US$25,000 per year, and nearly a third of families living below the federal poverty line. About 14 % of local neighborhood residents are unemployed, and less than 5 % of adult residents age 25 years or older have obtained a college degree . Twenty-four adults (75 % participation rate) attended one of three focus groups: session one (n = 10; 80 % female), session two (n = 10; 70 % female), and session three (n = 4; 100 % female). Participants in the focus groups were attentive, and many stated that these sessions would help the “voices” of patients to be heard. They also expressed that this type of engagement was missing from their local community: “These types of groups are our biggest support. More sessions like this should be regularly held in our community to allow patients to share their experiences and concerns.”
3.2 Perceived Barriers and Concerns About Diabetes Self-Management
In all three focus groups, participants described the limited availability and high costs associated with healthy foods in their neighborhood as significant barriers to maintaining a nutritional diet. One male participant’s comment reflected the group’s sentiments: “The high costs of fruit and vegetables can play a major part in not eating right, especially if you’re on a fixed income, as most of us are.”
A majority of participants also reported that fragmented medical care, high costs associated with care, and a lack of patient-centered care that accounts for different patient experiences also served as barriers to their T2D self-management. Several participants described poor communication with their doctor as a barrier to managing their T2D. As an illustration, one female participant remarked, “The doctors don’t listen to me. I try to tell them that I don’t like how the medication affects my body, but they just keep prescribing everybody the same pills.” As a result of the perceived suboptimal provider communication, the participant said that she would often “take control” of her own treatment by deciding to not take all of the prescribed medications.
Study participants also expressed concerns regarding cultural norms in the local community and social stigma related to T2D self-management behaviors. For example, many participants reported that T2D self-management was often not viewed as a high priority or as a “big deal” because of the high prevalence of diabetes in the community. There was also a perception among some respondents that men in their local community are not expected to maintain regular visits with a primary care provider. One male participant commented, “A man won’t go to the doctor unless his feet stop working.”
In addition, some participants expressed worries about the perception of social stigma associated with a diagnosis of T2D. Participants reported fears about others believing that their T2D had been self-imposed by “unhealthy lifestyle choices” (e.g., overeating, lack of exercise). This often resulted in feelings of self-blame. Other participants expressed unique concerns regarding the potential stigma associated with administration of insulin injections as part of their diabetes treatment. For example, one female participant remarked, “I am concerned that they look at me like I am a drug addict because of the [insulin] needles; that’s how I feel, the stigma of it.”
3.3 Potential Strategies to Improve Diabetes Self-Management
Focus group participants also shared potential strategies they believe will help to improve self-management, including enhanced social support from others living with T2D, increased availability of T2D educational materials and classes, and support from healthcare providers. Participants expressed comfort in hearing success stories from others who were effectively managing their T2D and stated that this helped to reduce their feelings of isolation. The availability of diabetes education was also mentioned as an important target to improve self-management. Respondents reported that participation in free or low-cost support groups and self-management classes in their local neighborhoods would help them to remain engaged in healthy behaviors, such as daily physical activity. One female participant remarked, “The free nutritional classes and support groups really help to keep you on track with eating the right foods.”
Representative quotes from focus groups
“It is hard to find fresh fruit and vegetables in my neighborhood, and they cost more money to buy.” (Male)
“On the radio, sometimes you hear about diabetes classes, but they are so far away from where I live.” (Female)
“I used to take healthy lunches to work, but somebody stole it. So now I have to eat the unhealthy food that’s available at work every day.” (Male)
“There would be so many bad temptations when I open the refrigerator at home.” (Female)
“If doctors work closer together it would help. I get conflicting advice from different doctors, and it’s confusing. I don’t know who to trust.” (Female)
“The doctors don’t listen to me. I try to tell them that I don’t like how the medication affects my body, but they just keep prescribing everybody the same pills.” (Female)
“A lot of my family members know about my diabetes; so now there’s special diabetic apple pie for me.” (Male)
“When you find out other people successfully live with diabetes that helps you cope too.” (Female)
“The free nutritional classes and support groups are the best.” (Female)
“There is a two-hour program to talk to a nurse about education, a nutritionist, and exercise.” (Female)
“My primary care doctor is the best. We have a partnership, and it means a lot.” (Female)
“I had a great doctor for many years. I trusted the information he gave me to take care of myself.” (Male)
“In our culture, a man won’t go to the doctor unless his feet stop working.” (Male)
“Many people aren’t concerned about managing diabetes because it is so common in our community.” (Female)
“To me, it is scary because everyone in my family passed away at a young age.” (Male)
“I hope that I could learn something that may prevent my daughter from coming down this road.” (Female)
“They look at me like I am a drug addict because of the needles; that’s how I feel, the stigma of it.” (Female)
“People think of you as being lazy because you’re a diabetic—they think you brought it on yourself.” (Female)
Our study demonstrates an effective strategy for actively engaging diverse community stakeholders in the design, implementation, and dissemination of community-centered T2D research. Our community-engaged research approach helped study investigators effectively connect with residents of the local area to elicit their perspectives about perceived barriers and potential strategies to improve their diabetes self-management behaviors. At the end of each focus group session, many participants requested additional information about the project and expressed a keen interest in receiving a summary of key findings from the study. This approach also helped to generate enthusiasm among DAB stakeholders who were actively involved in each stage of the research process and was beneficial for helping to build a sustainable partnership to support future work in the local community.
Consistent with our participant perspectives, prior studies have identified limited accessibility and the high cost of healthy foods in urban and/or minority communities as a barrier to self-management of diabetes and closely related conditions [27, 28, 29]. While continued policy initiatives are needed to improve healthy food access in these communities , understanding the interrelatedness of food availability and local cultural norms around dietary behaviors will help target interventions to improve patient behaviors. A novel contribution of our study is our identification of how distinct local cultural norms may impact patient priorities regarding daily self-management behaviors. For instance, participant concerns about the social stigma associated with needle use in the local community (i.e., insulin injections being associated with illegal drug use) highlight the importance of public perceptions and local community norms in self-management behaviors. Our in-depth discussions with participants and community stakeholders suggest that a deeper understanding of the complex interplay of these social, cultural and practical dimensions may prove most challenging for improving self-management behaviors.
Another dimension of particular significance and worthy of further investigation may be in relation to patient–provider relationships. Several focus group participants raised a number of concerns in relation to a lack of patient-centered care, medical mistrust, failure of the doctor to listen to the patient, and an inadequate response to concerns raised regarding treatment and medication regimens. Participants in our study reside in an urban and predominately low socioeconomic community. Prior findings suggest that patients living in racially segregated communities may be clustered in certain healthcare systems in which patients receive less patient-centered care [31, 32, 33]. Improved access to patient-centered and high-quality care in predominantly minority communities may be especially important in addressing medical mistrust and patient acceptance of treatment recommendations.
It is important to acknowledge the limitations of this study. First, the goal of our study was to engage members of our local community in research to better identify factors that influence diabetes self-management behaviors among residents. The perspectives of our participants may not be generalizable to non-participants or people with diabetes who reside in other types of settings. Second, we did not collect personal sociodemographic information from focus group participants and were thus unable to assess whether themes varied by subgroups. Our approach allowed us to better ensure participant confidentiality and avoidance of sensitive personal data. Further, our selected analysis approach was not intended to inductively generate theories or determine idiographic causation. The qualitative analysis approach employed in this study allowed us to explore an in-depth understanding and rich description of participants’ personal experiences with diabetes self-management in the local context.
In conclusion, our study demonstrates how community members can be actively engaged in research to identify community factors that influence diabetes self-management behaviors. We were successful at recruiting and engaging study participants from the local community because of the active engagement of dedicated DAB members who were very interested in the subject matter and who have long-standing personal connections in the community (e.g., with neighbors residing in apartment buildings, churches, etc.). We engaged diverse stakeholders in the design and implementation of our study, as well as in the interpretation of findings to ensure that our approach was relevant to local community members.
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.
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.
Compliance with Ethical Standards
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.
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