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. Author manuscript; available in PMC: 2025 Jun 1.
Published in final edited form as: Fam Process. 2023 Sep 18;63(2):731–748. doi: 10.1111/famp.12935

“A Cuff is Not Enough”: A Community-Based Participatory Research Approach to Soliciting Perspectives of African Americans with Hypertension and Their Family Members on Self-Management Intervention Features

Sarah B Woods a,*, Victoria Udezi a, Patricia N E Roberson b, Elizabeth Mayfield Arnold a, Shawna Nesbitt c, Angela Hiefner a
PMCID: PMC10947536  NIHMSID: NIHMS1938546  PMID: 37718711

Abstract

We aimed to solicit the perspectives of African Americans with hypertension and their family members on desired features of a behavioral hypertension self-management intervention. Using a community-based participatory approach to intervention design, we conducted four dyadic focus groups including African American community members with hypertension (n = 23) and their family members (n = 23) recruited from African American-serving Christian churches in a large, Southern metropolitan area. We used open-ended questions to elicit participants’ perspectives regarding program features they would recommend, intervention delivery, and barriers necessary to address. Our grounded theory analysis identified themes reflecting participants’ recommendations for hypertension self-management interventions to enhance health literacy and provide communication training via an accessible, population-tailored, family-based approach which they believed has the potential to create family-level impact on health across generations. Participants also recommended intervention researchers engage in advocacy (i.e., via physician education and policy change) as part of a broader impact on structural inequities driving worse hypertension and health outcomes for African Americans. The perceptions and recommendations of African Americans with a lived experience of hypertension, as well as their family members, aid in shaping acceptable and efficacious behavioral interventions aiming to promote hypertension self-management behavior while leveraging the unique power of family relationships to create sustained behavior change.

Keywords: family relations, community-based participatory research, health disparities, hypertension, qualitative research, self-management

Despite consistent evidence regarding the efficacy of lifestyle management (i.e., diet, exercise, smoking cessation, blood pressure monitoring, medication adherence) to achieve hypertension control, persistent high blood pressure remains a primary health concern in the US, especially for African Americans. African Americans with hypertension are at highest risk of cardiovascular disease, such as heart failure, end-stage renal disease, stroke, and mortality, compared to other racialized groups (Clark et al., 2019; Ferdinand et al., 2020; Fryar et al., 2017; Whelton et al., 2018). African American patients are also most likely to report difficulty implementing and adhering to hypertension self-management recommendations, resulting from a myriad of structural barriers. Barriers to hypertension self-management stem especially from inequities in health care quality (e.g., due to racism experienced as part of medical care), racist policies impacting access to healthy options (e.g., neighborhood segregation, redlining promoting food deserts and limiting spaces for exercise (Gao et al., 2022; Kershaw et al., 2017; Shaker et al., 2022; Yang et al., 2017), and discrimination-related stress (Crews et al., 2010; Ellis et al., 2022).

In addition to these structural barriers, strained and stressful family relationships are linked to self-management difficulties for African Americans with hypertension, including decreased exercise, problematic alcohol use, and greater stress-eating (Woods et al., 2022). The strain of caregiving for family members may present a further challenge to moderating health behaviors in the context of disease management (Bramante et al., 2020). In addition to behavioral components, family conflict increases stress (Cichy et al., 2012), which can contribute to the development of hypertension – a troubling effect for an already at-risk population (Ellis et al., 2022). Conversely, supportive family relationships are a potent facilitator of hypertension self-management (Flynn et al., 2013; Rimando, 2015). This is particularly true for African Americans, for whom family inhabit a uniquely important source of medical advice, culturally-specific diet practices, and emotional and instrumental support (Mansyur et al., 2013; Peters et al., 2006; Warren-Findlow et al., 2013). As such, family-based interventions hold unique potential to improve hypertension self-management, and blood pressure control, for African Americans.

Despite these findings on the importance of family, prior research has failed to incorporate African American patients’ family members into multilevel hypertension self-management interventions (Yang et al., 2019), citing patient privacy concerns (Ameling et al., 2014) and the inability to sufficiently address conflictual family relationships (Yang et al., 2019). However, studies incorporating community member feedback on why and how best to engage family support persons have been rare (Flynn et al., 2013). Thus, learning the perspectives of African Americans with hypertension and their family members regarding the ideal features of a family-based intervention is particularly important for intervention design.

Community-Based Participatory Research Approach

Building on the uniquely powerful resource of family relationships to improve hypertension self-management, and inviting community members’ wisdom on how best to leverage the strength of these relationships, reflects a community-based participatory research (CBPR) approach (Mendenhall et al., 2013). Honoring community members’ expertise, gathered via formative qualitative research, also reflects CBPR (Berge et al., 2009; Viswanathan et al., 2004). Soliciting (1) the lived experiences of persons with hypertension, (2) perspectives on barriers and facilitators of self-management, (3) perspectives on ideal intervention components, and (4) feedback regarding intervention design are foundational for intervention adaptations that are effective and acceptable. Shaping intervention design to directly incorporate and address community member perspectives is critical when targeting populations at risk of health disparities who are less often captured in clinical research (Prasanna et al., 2021; Wieland et al., 2021). Notable examples of CBPR-informed hypertension self-management intervention trials include the Achieving Blood Pressure Control Together (ACT) Study (Boulware et al., 2020), the TRIUMPH trial (Boutin-Foster et al., 2013), and the FAITH! mobile health application study focused on cardiovascular health (Brewer et al., 2019; Cyriac et al., 2021). However, none of these studies represent family-based interventions. Given the potential for the unique wisdom of patients (persons with hypertension) versus patients’ family members, as well as shared, family-level experiences of health and disease management, engaging both groups in a CBPR approach to developing family-based interventions is particularly important.

Present Study

Use of a CBPR approach, especially with an underserved, minoritized patient population at enormous risk of experiencing structurally-perpetuated health inequities, may improve an intervention’s feasibility, acceptability, and effectiveness (Ameling et al., 2014; Wallerstein & Duran, 2010; Wallerstein & Duran, 2006). The purpose of the current study is to solicit the perspectives of African Americans with hypertension and their family members regarding ideal hypertension self-management intervention design using dyadic (patient-family member) focus groups. This paper describes this initial portion of what is an ongoing and iterative, CBPR-informed approach to family-based hypertension self-management intervention design and development.

Method

Parent Study Design

Hypertension disparities have been identified via county-level needs assessments which, in part, engage community members in focus groups to identify critical health priorities (Parkland Health & Dallas County Health and Human Services, 2022). Hypertension disparities in Dallas county mean that, for over 20 years, county residents identifying as Black or African American have had the highest heart disease mortality rate compared to peers of all other races/ethnicities. The results of the dyadic focus groups discussed in this paper are part of a larger CBPR-informed research process our team is undertaking to respond to these persistent regional inequities in hypertension and heart disease-related mortality. Our aim was thus to, first, engage community members in discussing hypertension disparities experienced by African Americans as well as the community members’ lived experiences of managing this condition (results described in Woods, Hiefner, Udezi, Slaughter, Moore, & Arnold, 2023), and to discuss the potential of family-based interventions as a solution. The present qualitative work to identify participant preferences in intervention design was part of this larger first-phase study completed for the purpose of informing the design of a family-based intervention for hypertension self-management. The results of the dyadic focus groups described herein will, next, inform the development and adaptation of a family-based intervention directly reflective of participants’ recommendations and collective wisdom. Intervention development will be followed by further dyadic focus groups to invite feedback regarding the intervention design, ahead of initial implementation, outcome evaluation, and further intervention modifications (Woods, 2023; ClinicalTrials.gov identifier: NCT05671302). This research process is reflective of CBPR principles of co-learning, cyclical and iterative problem-solving processes, and flexible, responsive intervention design (Mendenhall et al., 2013; Viswanathan et al., 2004).

The first-phase parent project from which the present data are derived recruited focus group participants from four African American-serving Christian churches in [a large, Southern metropolitan area]. Study personnel (simultaneously socially positioned as African American, with county residency and established community relationships) operated in partnership with church leaders who assisted in identifying potential participants and advertising the project in order to enhance participant trust. Further, to promote accessibility and a safe environment for participants, all focus groups were held at a physical location of the church leader’s choosing (i.e., their church, or an affiliated meeting space). Inclusion criteria included identifying as Black or African American, between the ages of 25 and 70, and as having hypertension; family members were selected by the person with hypertension, and were included if they were between the ages of 21 and 70 and involved with the patient participant’s healthcare. We did not further define “family support person” for participants, allowing them to select family members who could include close friends, church community members, or neighbors, for example. This study was reviewed and approved by UT Southwestern Medical Center’s institutional review board, and further details regarding recruitment are described elsewhere (Woods et al., 2023).

Focus Group Design

We conducted four dyadic (patient plus family member) focus groups using semi-structured interviews. Dyadic qualitative interviews support capturing rich data for both individual- and family-level phenomena (Morgan et al., 2013). In family-centered research, a dyadic method elicits perspectives that may not have emerged in individual interviews, and highlights important relational dynamics (Marks et al., 2008). A dyadic approach to focus group interviews facilitates participants building descriptions of common lived experiences together, adding detail as they converse to co-create and enrich data via collaborative storytelling (Polak & Green, 2016).

Each of the present dyadic focus groups were 90–120 minutes, facilitated by two to three research team members, and limited to 4 to 6 patient-family member dyads. Each member of the dyad received a $20 gift card for participation. Focus groups were preceded by the completion of informed consent, and a brief demographic questionnaire to characterize the sample. Specifically, we collected participants’ age, sex, marital status, education, employment status, health insurance status, use of hypertension medication, and whether they had an established primary care physician they see regularly. We also included a question, specific to participants with hypertension, asking “In what ways, does the family member you brought with you today get involved in your healthcare?” Answer options included medication management, home testing, tracking medical information, joining doctor’s appointments, reducing stress, sharing knowledge about hypertension/health, and a free text option; participants were invited to select all that applied.

Focus group facilitators utilized interview guides to conduct the focus groups. First, the facilitators asked participants open-ended questions to explore perspectives on hypertension risk factors, barriers and facilitators of self-management, family influences on self-management, and the impact of hypertension on the family. The results of data deriving from these interview questions are described elsewhere (Woods et al., 2023). Second, facilitators asked a set of open-ended questions specific to intervention design, which are the focus of the present study. These questions were designed to solicit participant recommendations regarding ideal features of family-based interventions for hypertension self-management (Table 1). These open-ended questions were followed by probing questions to elicit further detail on participants’ responses as necessary, as well as follow-up questions for clarification when needed.

Table 1.

Dyadic Focus Group Interview Questions

1. If we were to develop this family-based program, or a similar program that could help both of you – what recommendations would you have for the program? What would you recommend we include? What features of the program would be most helpful?
2. Of the possible ways we could reach out to patients and their family supports to help support them – telephone, home visits, group meetings, or electronic methods such as using email or text messages – which would you find the most effective or helpful, and why?
3. What personal, family, or community barriers to managing hypertension would you recommend we address?
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All interviews were audio recorded, with field notes documented contemporaneously by a research team member with scribing experience in order to capture important nonverbal data, the identity of each participant as they spoke, and the relationships amongst the participants. These notes aided the transcription process, resulting in robust text transcripts reflecting both verbal and nonverbal data.

Analysis

Grounded theory and an iterative coding process were used to guide the analysis, due to the emphasis in grounded theory on generating knowledge via firsthand, field-based knowledge and remaining sensitive to researcher positionality as well as contextually-influenced process (Glaser & Strauss, 1967; Starks & Brown Trinidad, 2007; Strauss & Corbin, 1998). Focus group transcripts were independently read and reviewed in their entirety by three members of the research team. These team members (initials, S.W., V.U., A.H.) developed a preliminary codebook utilizing first-level (open) coding, first individually and then collaboratively. Data were categorized such that multiple codes could be applied to data segments through this process. During team discussions of the preliminary codebook, overarching second-level (axial) codes were identified reflecting a linking of the properties and dimensions of open codes (Strauss & Corbin, 1998). This structure of first- and second-level codes was then reviewed in total and applied a second time to transcripts by one research team member (S.W.) using NVivo 12.6.1 (QSR International Pty Ltd, 2019). The second round of coding was triangulated with a group-level review by the same initial three team members to mutually arrive at final themes. Throughout the analysis, the research team engaged in a bracketing process (Gearing, 2004) in order to monitor and critically reflect on any influence of researcher bias, assumptions, or personal experiences on theme identification. Lastly, final themes were presented to the full research team (two of whom had not attended a focus group [P.N.E.R., S.N.], and three of whom had not been involved in the interim coding process, and thus could serve as peer debriefers to enhance credibility of the analyses; Brown, Stevens, Troiano, & Schneider, 2002; Lincoln & Guba, 1985) and any differences in thematic identification were discussed.

Positionality Statement

A core CBPR principle is study team members embracing humility through reflexivity, an approach that necessitates team members attending to power while socially locating themselves in the context of the research (Abrams, Tabaac, Jung, & Else-Quest, 2020). At the time of this study, all authors existed as professionals in academic settings, and identified as health care scholars, and as women, primarily residing in the region where the study was conducted. Four authors identified as mental health and/or family science experts and White; two identified as physicians and African American. Our personal characteristics provided diverse lenses through which we interpreted the data, but also had the potential to exert influence on our analyses. To protect against bias, we engaged in bracketing and regular coder discussion of experiences of the study process and data analyzed, as discussed above. We also engaged in final coding discussions with the full team to invite perspectives from team members who had not been involved with the open and axial coding process to decrease the likelihood of groupthink (Hill et al., 2005).

Evaluation of the Analysis

Saturation.

Though saturation is a debated concept in qualitative research, especially for reflexive analyses, we emphasized thematic saturation, proceeding with the analytic process above until no new codes or themes emerged from the data (Guest, Bunce, & Johnson, 2006) and no further thematic refinements occurred. However, prior research supports that studies with a fairly homogenous study population are able to achieve saturation with four focus group discussions (Hennink & Kaier, 2022); the richness of our data were further expanded by conducting dyadic focus group discussions.

Trustworthiness.

To aid in judging the soundness of the present findings, we have specified a set of concepts (axial codes, or categories) grounded in the present data, as well as linkages between the concepts (themes) as emphasized by Strauss and Corbin (1998). Further, we have considered the contextual conditions and process of our study at length (e.g., including the process of participant recruitment, where to host focus groups, etc.). Trustworthiness of this project is enhanced by our team’s emphasis on self-awareness and possible bias (Lincoln & Guba, 1985), credibility via the use of peer debriefers, as well as our presentation of codes which were potentially located in some but not all of our participant groups (Glaser, 1978). Finally, we have described our present methodology in detail in order to enhance transferability (including possible replication, but also the potential for the transfer of our findings to apply in other regions, for example; Lincoln & Guba, 1985). In total, we argue that these procedures support the scientific rigor of our qualitative project, and the significance of the results.

Results

Sample Demographics

Dyadic focus groups included a total of 46 study participants, including 23 participants who identified as the individual with hypertension; the remainder identified as family support persons. Detailed sample demographics are presented in Table 2. Participants were an average 60.73 years old (SD = 12.85) and 69.6% female. In total, 34 participants reported having hypertension, and 67.4% reported currently taking medications for hypertension. Most participants reported having current health insurance (n = 38, full coverage; n = 1, partial coverage), and 80.4% reported having a current primary care physician that they see regularly. Participants with hypertension reported their family members were involved in their healthcare primarily through sharing knowledge about hypertension/health (n = 13), reducing stress (n = 12), and joining doctor’s appointments (n = 10); sharing knowledge and joining doctor’s appointments were largely reported by participants identifying as the individual with hypertension, whereas reducing stress was evenly reported by participants identifying as the individual with hypertension versus their family member.

Table 2.

Demographic Characteristics of Focus Group Participants: Descriptive Statistics (N = 46)

Variables Full Sample (N = 46) Person with Hypertension (n = 23) Family member (n = 23)
Age, mean (SD) 60.73 (12.85) 65.04 (8.43) 56.00 (15.23)
Female sex, n (%) 32 (69.6) 14 (60.9) 18 (78.3)
Marital status
 Married, n (%) 23 (50.0) 10 (43.5) 13 (56.5)
 Never married, n (%) 7 (15.2) 4 (17.4) 3 (13.0)
 Separated/Divorced, n (%) 8 (17.3) 4 (17.4) 4 (17.4)
 Widowed, n (%) 7 (15.2) 5 (21.7) 2 (8.7)
Education
 High school/GED, n (%) 5 (10.9) 3 (13.0) 2 (8.7)
 Some college/Associates, n (%) 13 (28.3) 5 (21.7) 8 (34.8)
 Bachelor’s degree, n (%) 11 (23.9) 4 (17.4) 7 (30.4)
 Graduate/professional degree, n (%) 16 (35.6) 11 (47.8) 5 (21.7)
Employment
 Full-time, n (%) 12 (26.1) 5 (21.7) 7 (30.4)
 Part-time, n (%) 5 (10.9) 3 (13.0) 2 (8.7)
 Unemployed, n (%) 4 (8.7) 2 (8.7) 2 (8.7)
 Retired, n (%) 18 (39.1) 12 (52.2) 6 (26.1)
 Not able to work 5 (10.9) 1 (4.3) 4 (17.4)
Family member involvement in health, n (%)a N = 34 n = 23 n = 11
 Medication management 9 (26.5) 5 (21.7) 4 (36.4)
 Home testing 9 (26.5) 5 (21.7) 4 (36.4)
 Tracking medical information 4 (11.8) 2 (8.7) 2 (18.2)
 Joining doctor’s appointments 10 (29.4) 7 (30.4) 3 (27.3)
 Reducing stress 12 (35.3) 6 (26.1) 6 (54.5)
 Sharing knowledge about hypertension/health 13 (38.2) 11 (47.8) 2 (18.2)
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a

Percentage reflects 34 participants identifying as having hypertension (including 11 family members); percentage total is greater than 100% as participants were allowed to select more than one option (n = 4 participants with hypertension missing data on these items)

Qualitative Findings

The results of the qualitative analyses centered on three themes. Participants provided recommendations for family-based interventions to support hypertension self-management specific to Education to Be Your Own Best Doctor, Centered in Community, and Working On Getting Those Messages Out (Table 3). Though dyadic interview analysis may emphasize the perspectives provided by individuals in the dyad(s), these three themes reflect active narrative co-creation that occurred in each dyadic focus group. To elucidate this analytic process, and the nature of the conversational data and co-created themes, we present several participant quotes that reflect multiple participants engaging in discussion.

Table 3.

Results of Qualitative Analyses

Themes Axial Codes (Categories) Implications for Intervention Design
Education to Be Your Own Best Doctor Health Literacy • Provide holistic health information and education
• Promote proactive health behavior, agency
• Provide blood pressure cuffs
• Address barriers to self-management resources
Communication Training • Teach (and facilitate) communication skills to improve family health and health behavior conversations
• Teach how to communicate with physicians
Centered in Community Accessible • Center recruitment in established sources of support (including via engaging family)
• Solicit participant feedback on intervention design
• Emphasize participant comfort and trust
• Tailor materials to the population
• Use multiple mediums to teach and promote engagement, adherence
Family-Based Approach • Engage family members in the intervention, health learning, physician visits, and in actively providing support
• Use a strengths-based approach to emphasize family strengths, joy
Work On Getting Those Messages Out Family-Level Impact • Ensure lifestyle changes are accessible to the full family to maximize health benefits for patients’ family members
• Engage especially younger generations, as appropriate
Next-Level Advocacy • Provide physician education (to improve quality of care for African American patients)
• Engage in policy to improve health equity
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Education to Be Your Own Best Doctor

Participants in each focus group shared perspectives on desired content of interventions designed to support hypertension self-management, with a focus on health literacy and communication training. Health literacy emphasized the importance of providing health information and education, as one participant stated, “around a holistic approach” as well as the need to teach patients how to use that information, proactively, to have agency over their own health. For example, participants suggested that hypertension self-management interventions for persons identifying as Black or African American should: teach about connections between stress and hypertension (i.e., how increased stress is associated with increased blood pressure, as well as how stress can serve as a trigger for unhealthy diet practices, for example); teach about nutrition (i.e., with a focus on food selection and preparation, as well as providing information about diet substitutes) and blood pressure monitoring; and address health myths (i.e., teach about why medication adherence is key; discuss alternative health practices). As one gentleman stated:

You need to list those myths, ‘cause I think people need to know that. And that is something that has been very detrimental, absolutely missed in the community. So, they need to have some help, from some health professionals who are saying: ‘This will not help, and the end result of it is – you will die. If you stop taking your meds, you will die.’

Along with teaching about blood pressure monitoring, it was recommended that interventions be designed to provide blood pressure cuffs and to check in regarding their use: as one participant shared, “a cuff is not enough.” Similarly, participants in two groups suggested interventions may need to couple teaching about nutrition with promoting access to healthy food choices, and build in links to affordable medications. Finally, participants emphasized the need to teach patients how important it is for them to be knowledgeable about their health in order to be able to take care of and advocate for themselves: referred to by one wife as, “being your own best doctor.” Overall, participants strongly recommended self-management interventions, as one participant described, “Teach people how to be more proactive about their own health; that it is their health, and it’s their decision, and they’ve got to own it and take responsibility.”

Second, we located an axial code (i.e., category) specific to communication training, including teaching about family and patient-physician communication. First, participants reflected that hypertension self-management interventions should teach communication skills to aid in family discussions about health and health behavior. Participants also identified the potential for interventions to directly assist in facilitating family-level communication regarding health risks. As one father shared, “[Kids] don’t know about the medical problems they’re going to have later on... If they don’t see this, then they have nowhere to start.” In addition, participants suggested hypertension self-management interventions should teach patients how to communicate with their physicians, represented in this dialogue between three participants:

Patient Participant 1: Teaching the patients how to actually communicate with their doctor. Because you got a lot of people that go to the doctor and they’ll come home – “I didn’t tell my doctor this, I didn’t tell the doctor that.”

Family Member Participant 1: Well then – what’d you go there for?

Patient Participant 1: …This is my doctor. I let my doctor know it’s my body.

Family Member Participant 1: That’s what you have to do. That’s exactly what you have to do. … You have to be aggressive with your [hand clap] own [hand clap] healthcare [hand clap].

Family Member Participant 2: Just one thing – a caveat on knowing what you’re gonna talk about with your doctor…

Family Member Participant 1: Write down a note.

Family Member Participant 2: I always know to! Not only do you ask the question, but make sure you understand what the doctor is saying.

Centered in Community

Focus group participants provided feedback highlighting the need for hypertension self-management interventions aiming to support African Americans to be “centered in our community,” with an emphasis on interventions being accessible and using a family-based approach. In other words, intervention design should be approached in such a way that is inclusive of and tailored to African Americans, specifically, and promote feasibility, acceptability, and efficacy via family involvement.

First, participant responses identified the need for hypertension self-management interventions to ultimately be accessible for the African American community. Participants suggested it may be advantageous to provide a community-based route to participation that was “outside of the clinical setting,” or to center recruitment in “established hubs” of support, as well as solicit participant feedback and collaboration on intervention design. As one participant emphasized the value of participant feedback and collaboration is that,

Participants buy into it, as well as everyone involved. It needs to be a win-win situation, not something on paper that looks good for the media, and then we don’t hear from the group for another six months. It has to be an ongoing support and assessment, continuously. It has to be a bond.

Participants at times described a community-based approach as demonstrating commitment or increasing comfort, which contributes to building participant-level trust. As one participant with hypertension stated,

People really won’t respond or cooperate until you show you care. When you start talking about intervention – if I go in there with a kind of attitude that I don’t care, well then guess what? People, they glean that. They don’t care either, and it’s for their own good. So until you show you care, don’t expect cooperation or support, or to be a support system.

Further, participants suggested that part of a community-based approach is engaging the family members of African Americans with hypertension and focusing on multigenerational impacts (discussed further below).

Participants also recommended hypertension self-management interventions be specifically tailored to the population in order to maximize accessibility. Participants stated intervention materials need to be specific to African Americans: as one participant shared, “[educational material] needs to say ‘African American’ on it. I’ll say, ‘That’s about me and my blood pressure.’ And I’ll pick it up and I’ll read it. But if I think it’s generic, I probably won’t.” It was also recommended that interventions provide education on medications and self-management approaches that may be most efficacious specifically for African Americans with hypertension. Further, a few participants suggested materials should reflect the heterogeneity within the African American community. As two focus group members with hypertension discussed:

Participant 1: The African American community is not one homogenous group. It’s very segmented, and a lot of different people. A lot of different educational levels, socioeconomic levels.

Participant 2: Don’t put us in a box.

Finally, participants in three focus groups recommended interventions utilize multiple mediums, providing health education via tangible risks and visual data, with direct and “bitesize” health information messaging: “show them and tell them: ‘this is what will happen.’” Participants suggested interventions should utilize messaging in between intervention sessions, including the possibility of mobile health components (e.g., text messaging, email, phone calls) but cautioned any intervention should consider participants’ accessibility to technology. As one participant shared,

It takes all the different mediums of communication to really impact you. And, to get a person to help understand: what are those triggers inside themselves that trigger you to eat unhealthy things? To give you some comfort? And not to use food all the time as comfort. … When they finally decide to change...they’re hooked.

Related, participants highlighted the importance of assessing unique patient population needs prior to implementation: “Some families prefer things online. Some prefer small groups. Some might be interested in coming to a central location for sessions. So, I think it’s going to be a combination of all those things.” Finally, participants at times suggested electronic messaging as an intervention may be insufficient to boost participant adherence, recommending interventions include face-to-face components.

Second, we located a family-based approach axial code linking participants’ emphases on engaging patients’ family members in hypertension self-management interventions. While family-based approach data may have been informed by interview questions (Table 1; Woods et al., 2023) as well as the nature of using dyadic focus group interviews which promote shared narrative-building centered in relationships (Polak & Green, 2016), participants in each focus group often spontaneously, and emphatically, discussed the need to involve family members in the process of hypertension self-management. Indeed, participants in all focus groups recommended hypertension self-management interventions include and benefit patients’ families.

Specifically, participants emphasized the need for interventions to directly engage patients’ family members, via bringing family into physician visits, and engaging family in supporting the self-management behaviors of the person living with hypertension. As one participant stated, “Ask them to come in...the support person. To come with [the patient], so they’ll know what [the patient’s] numbers are that day. What they should be doing... Bring them into the education.” Participants also discussed the need for family-level treatment plans – specifically, goals for lifestyle changes that occur across the family, versus adopted solely by patients. As one woman shared, “If you tell one family member, ‘You need to lose weight,’ you really need to tell the entire family: ‘It’s time to eat healthy and be more active.’” Participants discussed the possible need for interventions to directly address confidentiality and patients’ privacy concerns as a potential barrier to family engagement: “Ask the supporter to come into the office visit so that [patients] don’t have an opportunity to... say, ‘Sit right here and wait until I get back. I’m going in to see the doctor, and it’s my business.’” As three participants discussed in one focus group,

Participant 1 (person with hypertension): When I go in with [wife’s name], and they talk about HIPAA, I’m like: ‘Hold up, turn around. This is my wife.’

Participant 2 (family support person): Yeah but, they have to do that because she has to give them permission to talk about her, with you. And if she doesn’t, they can’t.

Participant 1: Well, we’re on the same page about that.

Participant 2: We do that too, ain’t no secrets in here. We’re gonna get this all shared out.

Finally, a few focus group dyads recommended incorporating fun and family enjoying each other as part of a strengths-based approach in order to enhance acceptability. One wife described the importance of shared leisure to combat “getting so bogged down with the hustle and the bustle” and to avoid becoming “overwhelmed with the diet and exercise, and the seriousness of everything.”

Work On Getting Those Messages Out

Last, we identified a theme across participant feedback specific to the impact that hypertension self-management interventions should ultimately have on broader family systems (family-level impact), as well as systems outside the patient/family (e.g., healthcare, policy) via next-level advocacy efforts pursued by intervention researchers.

The family-level impact axial code reflects participants’ suggestions that interventions incorporate a preventative focus, including an emphasis to “work on getting those messages out” and educate families’ youngest generations. As one grandfather shared,

Now, we’re in the age group where we understand it, but it was never taught to us. Well, it wasn’t taught to me, let me say it like that. Now we have an opportunity to start at a lower level, so that our grandkids will know more about what will really affect your body.

Further, participants recommended self-management interventions should directly discuss how preventative health messages are shared within families in order to shift and improve these as needed. As part of this preventative orientation, participants emphasized the need for interventions to support lifestyle changes being “access[ible] to the entire family,” and discussed the benefits of a systemic ripple effect of improving health and wellbeing across family members, and across generations of families. As one participant reflected: “It’s vital that we inform our children about what’s going on in your bloodline.” In response, a second participant with hypertension emphasized,

I would hope we would have a program that we say, ‘Hey,’ – at the age of where we start sitting our children at the table with us, saying, – ‘This is not good for you.’ Because we’ve given several generations ribs, and sausages, and bacon. And it’s terrible for blood pressure.

Overall, participants suggested a family-level intervention could support African Americans living with hypertension in building even closer family connections that are open about health and self-care, and impact the uptake and maintenance of healthy behaviors across family relationships and the lifespan. As one participant reflected, explaining how involving family members helps more people become comfortable engaging in taking care of themselves,

A major barrier [to self-care] is being able to take your problems to somebody without reservation. If this program, where they know people – if they’re connected to the people that introduce them [to the program], it is a lot easier for them. You trusting your sister, and say, ‘Come on.’ You trusting your son, and he starts trusting his mom. I think that’s how the barrier comes down.

Codes that constituted the next-level advocacy category were fewer than the prior themes discussed, but nonetheless significant. Advocacy-related recommendations included interventions incorporating physician education. Participants in two focus groups suggested hypertension self-management interventions should incorporate training physicians about racism and the impact of their personal biases. For example, one family member participant emphasized, “It would be helpful if [physicians] had some awareness of their own biases that may get in the way of being most effective with African American patients.” Participants also suggested physicians be trained to effectively counsel, educate, and engage African American patients. As one participant stated, “Sometimes [these clinicians], they too polite. They talk too polite....All they’re interested in is testing, and taking pressures and whatnot. But [they should] tell [patients] what’s going on inside the body....Tell them what’s happening, and what will happen to you.” A fellow focus group participant agreed, suggesting,

Some doctors, especially a physician that hasn’t been around minorities that much..they’re more sterile. And they will talk at you. You may wanna just advise them not to just talk at patients. ‘I’m the doctor, and you do this.’ ‘It would help, you know, if you do more than just talk at them.’

Finally, participants in three focus groups recommended intervention researchers attend to “political message” and collaborate with policymakers to improve politicians’ awareness of community-level disadvantage and revise legislation that directly impacts the availability of hypertension management resources (e.g., sources of healthy food, equity-focused community development, etc.). One woman with hypertension requested, “Work with [city and county government] to create healthier environments.” Similarly, another participant stated,

Encourage your politicians that we have a problem out there. Politicians are there to solve our problems in our community. They need to convey..they need someone to speak for the people that are in need and underserved. Get out there, and get these politicians. Make them aware.

Discussion

The present findings highlight three themes identified by African American participants with hypertension and their family members which, together, imply areas key to hypertension self-management intervention design. As with prior research in this area, participants emphasized health education to improve health literacy (Brewer et al., 2019) while addressing barriers to care (e.g., providing home blood pressure monitors, similar to Ameling et al., 2014). Participants also emphasized using a multilevel, culturally-tailored design to enhance accessibility, address physicians talking together with patients (physician-patient communication), and engage community members in providing feedback through the intervention design and adaptation process – findings similarly reflected in prior intervention design studies (Ameling et al., 2014; Brewer et al., 2019; Ephraim et al., 2014). Indeed, this work is critically important as African Americans living with hypertension are least likely to report success in adhering to recommended treatment guidelines, and most likely to be undertreated, experience hypertension-related comorbidities, and suffer hypertension-related mortality. As participants in this study pointed to, the causes for these outcomes are multifactorial, but rooted in policy-level structural inequity.

More rare in prior research, though not without precedent (Flynn et al., 2013; Yang et al., 2019) are participants’ emphases on engaging family directly in the intervention, enhancing patient-family communication and family support for behavior change, and their focus on possible family system-level improvements in health outcomes (which some suggested could have multigenerational benefits). Though family support is key for promoting hypertension self-management, approaches to designing hypertension self-management interventions for African Americans have rarely incorporated the perspectives of both patients and their family members. Exceptions have leveraged family member input to design interventions focused on patient- and clinic-level change (e.g., Boulware et al., 2020). The results of the present intervention design focus groups, however, point to the need to design family-based self-management interventions. Indeed, even participants’ references to community-based recruitment and engagement emphasized the role of family as community, and family’s role in increasing intervention acceptability. A family-based intervention reflects a culturally-tailored approach to providing hypertension education and self-management support and is specifically a sociocultural strategy to cultural appropriateness (Kreuter et al., 2003) that positions discussions of hypertension and wellbeing in the social context and cultural values of persons racialized as Black or African American (Singh et al., 2022). Further, the family-level impact suggested by participants is supported in the literature: for example, Thornton et al. (2019) found that African American adults’ participation in a hypertension self-management intervention resulted in family-level changes to meal preparation and the food environment of the home, and that role modeling healthy dietary behavior may benefit the health eating behaviors of coresidential adolescent children. Leveraging a family-based approach to directly incorporate the family members of persons managing hypertension may serve to amplify family-level impact, magnifying both direct and indirect health benefits for patients and their families. This systemwide effect may be uniquely impactful for patients identifying as Black or African American who may be less likely to seek medical care due to repeated experiences of discrimination, and more likely to seek family- and community-based health wisdom and medical advice.

Reflecting our grounded theory approach to analyses, Figure 1 ties the study’s thematic findings together in a singular model and potential approach to a family-based hypertension self-management intervention. Specifically, we suggest participants’ themes point to designing a culturally-adapted, multilevel community- and family-based intervention that promotes accessibility and directly addresses health literacy via health education (for patients and families) while optimizing family support for lifestyle change through strengths-based communication training, with the ultimate aim of improving hypertension self-management and thus hypertension outcomes. This approach has the potential to maximize feasibility and acceptability, while also centering community members with lived experience in the intervention design process. Moreover, participants in the present focus groups advised us of the importance of intervention researchers moving their work beyond directly intervening with patients and families to use their expertise and research to decrease bias in medicine, and to advocate for equitable policy. Radiating research impacts beyond direct samples being served (and even their families) to benefit the lived environments of persons racialized as African American while addressing structural racism is an approach firmly rooted in CBPR. Community-based participatory researchers working towards intervention design are uniquely positioned to engage in policy work, and indeed have an ethical responsibility to leverage what is learned from community members, and to partner with them, in giving stronger voice to necessary change (Adkins-Jackson & Rodriguez, 2022; Mueller et al., 2014).

Figure 1.

Figure 1.

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A multilevel model of a family-based hypertension self-management intervention approach for African Americans with hypertension and their family support persons.

Limitations & Future Research

This study has several limitations. First, though community-based environments can aid recruitment and engagement (Wieland et al., 2021), current participants reflect solely Christian, church-attending African Americans. While representative of African Americans’ predominant faith orientation in the US (Pew Research Center, 2021), hypertension can vary by denomination (Robbins et al., 2020) and family-oriented perspectives may have been shaped by faith-specific beliefs about the role and value of marriage or family. Next-phase intervention development focus groups inclusive of non-church attending patients and family members may be key to developing a scalable intervention. In addition, the present sample’s clinical characteristics were not verified by a review of their medical records. Incorporating clinic-based data to ascertain hypertension control, engagement in healthcare, disease comorbidities, and other health-related characteristics of focus group participants may aid in contextualizing participants’ intervention design perspectives. Finally, though we intentionally defined “family” broadly, and engaged persons identifying as having hypertension in selecting the family support person who would join, we did not collect self-report data regarding the specific nature of dyads’ relationships. Focus group discussions indicated many dyads were not family defined by biological or legal relationships, but close friends, neighbors, and/or church community members. Though intentionally inclusive, future research capturing the relationship type of patient-family dyads may help to characterize the feedback provided for intervention design (Priest et al., 2018), and the specific intervention approach that may be most efficacious.

Conclusion

In summary, the results of this study suggest that culturally-adapted, family-based interventions to support the hypertension self-management of persons identifying as Black or African American should include health education to improve hypertension knowledge, optimize family support for behavior change, and prioritize accessibility while directly addressing patients’/families’ barriers to disease management. Researchers simultaneously advocating to improve larger systems is a direct call to move this type of research out of the academic ivory tower and to intentionally disseminate findings through avenues with the potential to create big-picture change. Future funded research will evaluate and refine the intervention developed directly from these focus group results, engaging African Americans with hypertension and their family members in iteratively adapting the intervention, followed by pilot testing the intervention to assess acceptability and feasibility.

Acknowledgements:

The authors wish to thank Patricia Knowles and Gabrielle Slaughter, M.D. for their help in data collection for this study.

Funding:

This work was supported by the National Institute on Minority Health and Health Disparities of the National Institutes of Health under Award Number R21MD017658. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

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