
Daniel J. Schober
Assistant Professor,
Master of Public Health Program
Introduction
This brief report summarizes activities completed during the Steans Center Fellowship year (Academic Year 2018-19). The purpose of this project was to examine the self-management of hypertension among African Americans from west side Chicago neighborhood churches. The Faculty Fellow partnered with West Side Alive (WSA) to conduct a mixed-methods (qualitative and quantitative) study. Results of this project informed WSA's development of a hypertension intervention to address health inequities among African Americans from west side Chicago neighborhoods churches to understand and address neighborhood-based health inequities that contribute to a substantial disparity in quality of life and life expectancy in Chicago.
This community-based research project posed the question: What are the barriers and facilitators to effective self-management of hypertension among African American adults, across multiple ecological levels – individual, family, and institutional levels (church and healthcare provider)? There were three primary research goals for this project (as stated in the Faculty Fellowship Project Description):
- Develop a culturally competent mixed-methods interview guide to administer with African Americans who have hypertension.
- Conduct 30 individual interviews with African American adults who have hypertension and reside in a west side community.
- Use the results of this project to inform the development of a hypertension intervention for west side communities in Chicago.
Activities
In the section below, activities and accomplishments are described for each of the three project goals.
Goal 1: Develop a culturally competent mixed-methods interview guide to administer with African Americans who have hypertension. The faculty fellow and community partner worked together to develop a 10-item interview guide that utilized mixed methods (qualitative and quantitative item). The development of the guide involved feedback from a multi-disciplinary team with WSA (at Rush University Medical Center (RUMC)). The guide went through multiple iterations, including an iteration in which the guide was focused on medication adherence. The guide was pilot tested with a church coordinator (who also had been diagnosed with high blood pressure and met all other inclusion criteria) and no major issues emerged. Therefore, the guide was retained as developed. The guide can be seen in Appendix 1.
Goal 2: Conduct 30 individual interviews with African American adults who have hypertension and reside in a west side community. We conducted 24 interviews, at which point no new themes on emerged on barriers or facilitators to blood pressure medication adherence. To ensure we reached theoretical saturation, we conducted an additional 3 interviews. No new themes emerged in these final three interviews, so we ended data collection and our final dataset consisted of 27 participant interviews. This resulted in a total of 22 facilitator codes to medication adherence and 32 barrier codes to medication adherence. Appendix 2 provides a table, with codes, a short definition, and related code and participant counts. We also developed a visual model of our codes, that depict the barriers and facilitators to medication adherence, across ecological levels (see Appendix 3). To validate this visual model, we conducted member checking focus groups with participants to establish trustworthiness of the data and assure credible findings. The focus group facilitator provided participants with the model and codes, probing for anything that the researchers may have misinterpreted, using the question, “When you think about taking blood pressure medication, is there anything that we have misunderstood?" Participants did not identify any misunderstandings with ecological levels, settings, or code categories.
Goal 3: Use the results of this project to inform the development of a hypertension intervention for west side communities in Chicago. WSA (led by RUMC) has developed their Community Health Worker (CHW) Intervention – a 6-month program that involves a CHW working with church members with high blood pressure, 1-on-1, every-other week to improve their medication adherence, diet, and social determinants (e.g., food security). The program has recruited 78 participants and is currently taking place. The Steans Center Community-based Research (CbR) Faculty Fellowship supported the development of the intervention in 3 ways:
- The faculty member and graduate research assistant became a member of the WSA (RUMC) team and contributed to discussions in weekly meetings throughout the development of the intervention.
- The faculty member and graduate research assistant lead discussion with the WSA (RUMC) team and shared preliminary findings of the CbR fellowship, which informed the development of the intervention.
- Data from the CbR fellowship informed baseline assessment used in the CHW program that guides the initial 1-on-1 meetings between the CHW and church member.
Outcomes
In the Faculty Fellowship Project Description, the faculty fellow described 17 key tasks. Each task is listed below with a description of outcomes accomplished.
#
| Task |
1
| Finalize study measure and protocol Outcome: As indicated above (and in Appendix 1) we completed a study measure and protocol to administer the measure. |
2 | Submit study to DePaul's IRB and obtain approval Outcome: The Faculty Fellowship project was approved by RUMC and DePaul's IRB |
3 | Train data collectors (DePaul research assistant; 2 community members) Outcome: Two DePaul research assistants were trained to collect data, enter data, and conduct data analysis. |
4 | Pilot test the interview guide with at least 3 participants Outcome: As mentioned above, the interview guide was piloted tested with a church coordinator (who also had high blood pressure) and no changes were needed. |
5 | Submit an amendment to DePaul's IRB Outcome: As mentioned above, the Faculty Fellowship project was approved by RUMC and DePaul's IRB |
6 | Collect data (transcribe as interviews are conducted), involve MPH 525 (Autumn), develop slides for MPH 511 (Winter) Outcome: Students in MPH 525 met with WSA/RUMC three times to support the development of the CHW intervention. |
7 | Write interim report for the Steans Center Outcome: Brief update reports were provided to Howard Rosing throughout the project period. |
8 | Develop codebook, code data Outcome: As mentioned above, we developed a codebook with 55 codes. Data was coded by the faculty fellow and each DePaul research assistant. |
9 | Integrate project into MPH 512 Outcome: This project was integrated into MPH 512 as a workshop on qualitative methods. |
10 | Develop and submit presentation abstract to national conference Outcome: We presented at the Society of Behavioral Medicine 2019 Annual Meeting, Washington, DC (March 2019). |
11 | Clean and analyze data set Outcome: As described above, qualitative data was coded by the faculty fellow and research assistants. We conducted member checking with the community and Appendix 2 and 3 provide a summary of the results. |
12 | Develop lecture slides for MPH 501 (Autumn) Outcome: MPH 501 was migrated to an online course during academic year 2018-19, but findings from this project will be incorporated in future in-person administrations of the course. |
13 | Write final manuscript Outcome: We are currently working on a manuscript for submission to the peer-reviewed journal, Qualitative Health Research. We hope to submit to the journal before the start of the 2019-20 academic year. |
14 | Submit final report Outcome: The present document represents the final report. |
15 | Present findings at Health Disparities and Social Justice Conference Outcome: We presented a panel discussion of our findings at this conference on August 5, 2019. |
16 | Present findings at department seminar, Social Medicine Consortium Outcome: We presented our findings at the RUMC, Preventive Medicine Grand Rounds in February, 2019 and at the Center for Community Health Equity's Series in May, 2019. |
17 | Present findings at Steans Center Symposium Outcome: We look forward to sharing our findings in Spring, 2020. |
Future Directions
The Steans Center Community-based Research (CbR) Faculty Fellowship is coming to a close (our final tasks are the manuscript for submission to the peer-reviewed journal, Qualitative Health Research. We aim to submit to the journal before the start of the 2019-20 academic year and the Steans Center Symposium in Spring of 2020). Despite the project period ending, we have developed a strong, collaborative partnership and plan to keep working together beyond the conclusion of the Faculty Fellowship period. The faculty fellow continues to attend the weekly WSA/Rush meeting. Drs. Schober and Lynch are also conceptualizing a follow-up manuscript on the role of community vs. academic researcher in community-based participatory research. The Steans Center Community-based Research (CbR) Faculty Fellowship was instrumental in fostering a cross-organization participatory research relationships that will continue into the future.
Appendices
- Interview Guide
- Barrier Codes (N=22) and Facilitator Codes (N=32) that Emerged During Interviews
- Visual Model
Appendix 1. Interview Guide 11-09-18 Interview Guide: West Side Alive Hypertension Medication Adherence Study Thanks for taking time for the interview today. I am working with West Side Alive on this interview project. Our screening study showed that there are lots of people in your church and other West Side Alive churches and the surrounding community who have high blood pressure. - In fact, we found that only about 20% of adults that did the West Side Alive screening study had healthy blood pressure.
- This is a problem because high blood pressure can cause lots of health problems.
- We want to figure out how to help folks get their blood pressure under better control; we understand that most folks don't take their medication perfectly.
- By answering our questions you are helping us figure out what might work. Please be as honest as you can – all your answers are confidential.
Today's interview will take about 60 minutes – I'll ask a few questions about your experience managing your blood pressure. There's no right or wrong answers. I'll audio record today's conversation, but will keep your identity confidential; in other words, I won't associate your name with what you've said.
Let's begin with our Institutional Review Board form. You have the right to skip any question that you do not wish to answer. You also have the right to end this interview at any time (Get signature, answer questions).
Before we begin, do you have any (additional) questions for me?
(Start recorder and read this statement, verbatim):
- This recording is for the West Side Alive Hypertension Medication Adherence Study.
- I am with participant number _____
- Today's date is _____
- I'd like to begin by asking how high blood pressure affects you.
- What is the most important thing you can do to control your blood pressure?
(Listen for: Beliefs about medication)
- How many pills do you take for your blood pressure?
- How often do you take each pill?
- Now, think back to the most recent day you can remember, where you took your blood pressure medicine(s) as prescribed. Can you walk me through that day?
(Listen for: Patient motivation, feedback, reminders)
- What were the things that helped you take your medication?
- How were people in your life helpful to taking your medication?
- Are there other things that help you take your medication, that did not come up on this day?
- Next, think back to the most recent day you can remember, where you DID NOT take your blood pressure medicine(s) as prescribed. Can you walk me through that day?
(Listen for: Regimen complexity, stress)
- What made it hard for you to take your medication?
- Are there other things that make it difficult for you to take your medication, that did not come up on this day?
- Can you share any feelings – positive or negative – about the blood pressure medication(s)?
- When your blood pressure medication(s) run out, what are the steps you go through to refill it/them?
- How would you describe your typical interaction with the pharmacy?
- Does insurance influence the process of refilling your medication, and if so, how?
- Is the cost of your high blood pressure medication an issue, and if so, how?
- Does transportation influence the process of refilling your medication, and if so, how?
- Does the option to receive your medications via mail order influence the process of refilling your medication, and if so, how?
- Can you tell me about a time that someone in your life helped you take your blood pressure medication(s)?
(Listen for: Having others attend your appointments, collaborative care)
- Have nurses or community health workers helped you, and if so, how?
- Has your church helped you, and if so, how?
- Can you tell me about a time that you visited your doctor and discussed your high blood pressure?
(Listen for: Doctor friendliness, Patient-provider communication, shared decision making, truth, discrimination)
- Is there anything your doctor could have done differently that would have made it a better experience for you?
- How would you describe your relationship with your doctor?
- Can you tell me about the treatment plan your doctor provided for your high blood pressure?
- Can you describe how you felt about this treatment plan during the visit?
- Can you describe how you felt about this treatment plan over the next few weeks?
- How would you feel about advocating for change to this treatment plan?
- I am going to read a statement and I want you to share with me, how you feel about it, “I trust my doctor"
- What does the word “trust" mean to you?
- Is there anything else that you would like to share about taking your blood pressure medication?
Finally, I have a few questions to ask regarding other health behaviors.
1a. Are you ever physically active? (No or Yes) - If No (Skip to item 2a.)
- If Yes Please share your level of agreement with the statement:
| | | | | |
I feel confident in my ability to be physically active. | Strongly Disagree | Disagree | Neither Agree Nor Disagree | Agree | Strongly Agree |
1b. Could you explain your reasoning for the rating you provided? | | | | | |
2a. Do you eat at least some healthy foods on a typical day? (No or Yes) - If No (Skip to item 3a.)
- If Yes Please share your level of agreement with the statement:
| | | | | |
I feel confident in my ability to eat healthy foods. | Strongly Disagree | Disagree | Neither Agree Nor Disagree | Agree | Strongly Agree |
2b. Could you explain your reasoning for the rating you provided? | | | | | |
3a. Do you have a way to manage your stress? (No or Yes) - If No (Skip to item 4a.)
- If Yes Please share your level of agreement with the statement:
| | | | | |
I feel confident in my ability to manage my stress. | Strongly Disagree | Disagree | Neither Agree Nor Disagree | Agree | Strongly Agree |
3b. Could you explain your reasoning for the rating you provided? | | | | | |
4a. Would you say you get a good night's sleep at least some of the time? (No or Yes) - If No (Skip to item 5a.)
- If Yes Please share your level of agreement with the statement:
| | | | | |
I feel confident in my ability to get a good night's sleep. | Strongly Disagree | Disagree | Neither Agree Nor Disagree | Agree | Strongly Agree |
4b. Could you explain your reasoning for the rating you provided? | | | | | |
5a. Have you ever used a device to monitor your blood pressure numbers? (No or Yes) - If No (Skip to item 6a.)
- If Yes Please share your level of agreement with the statement:
| | | | | |
I feel confident in my ability to monitor my blood pressure numbers. | Strongly Disagree | Disagree | Neither Agree Nor Disagree | Agree | Strongly Agree |
5b. Could you explain your reasoning for the rating you provided? | | | | | |
6a. Do you ever drink alcohol? (No or Yes) - If No (Skip to item 7a.)
- If Yes Please share your level of agreement with the statement:
| | | | | |
I feel confident in my ability to use alcohol in moderation. | Strongly Disagree | Disagree | Neither Agree Nor Disagree | Agree | Strongly Agree |
6b. Could you explain your reasoning for the rating you provided? | | | | | |
7a. Do you ever use tobacco products? (No or Yes) - If No (Skip to the Closing Statement)
- If Yes Please share your level of agreement with the statement:
| | | | | |
I feel confident in my ability to quit using tobacco products. | Strongly Disagree | Disagree | Neither Agree Nor Disagree | Agree | Strongly Agree |
7b. Could you explain your reasoning for the rating you provided? | | | | | |