Features and impact of trust-based relationships between community health workers and low-income pregnant women with chronic health conditions: A focus group study

Background Pregnancy can be a particularly stressful time for women with underlying chronic conditions. Chronic health conditions such as hypertension, cardiovascular disease, and diabetes are associated with obstetric morbidity and mortality and poor birth outcomes, and are becoming more prevalent among pregnant women in the United States. In light of the American Public Health Association’s call to increase the reach of community health worker (CHW) interventions, the aim of this paper is to better understand how to effectively support women with chronic disease during pregnancy by examining the impact of CHW support from the perspective of pregnant women.Methods Clients and CHWs were recruited from three community-based organizations in the eastern United States running Merck for Mothers-funded interventions to support pregnant women in urban settings. Nine focus groups and eight interviews were conducted with 40 low-income clients with chronic conditions and 18 CHWs and program staff. Focus group and interview data were analyzed using grounded theory-informed thematic analysis.Results Clients reported that CHWs contributed to their well-being during pregnancy in numerous ways and credited CHWs with improvements in mental health and health behaviors. Services like providing guidance around nutrition appeared to play a role in improving client management of chronic disease. CHWs’ ability to build trust-based relationships through emotional attendance, authenticity, and prioritization of clients’ needs facilitated the stress reduction and salubrious behavioral change reported by clients.Conclusions CHWs provide care for the whole woman during pregnancy, an approach that is unique within healthcare and confers multiple benefits. CHW intervention is particularly valuable for women facing challenges such as chronic disease and limited access to resources. Additional municipal, state, and federal resources should be devoted to expanding programs that provide vulnerable mothers with comprehensive care.


Introduction
Pregnancy can be a stressful time, particularly for women with underlying health conditions and limited access to social and economic resources. Not only are chronic conditions such as hypertension, cardiovascular disease, and diabetes associated with adverse maternal and neonatal health outcomes, but the prevalence of these conditions is increasing among pregnant women in the United States [1]. In addition, prevalence of these conditions is graded by socioeconomic status, with the highest rates occurring among low-income women [1]. On the other hand, pregnancy is a time when women are highly motivated to improve their health behaviors to achieve the best possible outcomes for themselves and their babies [2], making the perinatal period an important "window of opportunity" for health promotion [3].
Although many women engage frequently with health systems during pregnancy, not all do: From 1995 to 2002, an average of 11.2% of women who gave birth in the US received inadequate prenatal care as measured by the Adequacy of Prenatal Care Utilization Index [4]. Many factors underlie this care utilization gap, including women's personal feelings about the pregnancy, lack of logistical support, and service provision issues, including perceived caregiver insensitivity [5][6][7]. An integrative review of women's experiences with prenatal care in the US identified provider relationships as the most critical aspect of care for many women [8]. This emphasis on the importance of relationships is also supported by research suggesting that authentic relationships in care management (i.e., those characterized by genuineness, a sense of security, and temporal continuity) benefit patients with chronic conditions by empowering them to take a more active role in their care [9].
Community health worker (CHW) interventions represent a promising strategy to reduce the incidence and impact of chronic disease during pregnancy and improve quality of care, particularly among low-resource women. CHWs are lay health workers trained in health promotion and healthcare interventions who are members of, or closely connected to, the communities they work with [10]. In general, CHW duties include brokering access to medical services and educational resources, fostering health education and selfsufficiency, and providing material resources with the goal of improving client's quality of life through personal connection and assistance [10].
Reviews of CHW interventions aimed at improving quality of care and health outcomes have found them to be effective for health initiatives such as cardiovascular disease risk reduction [11,12], cancer prevention [12], and diabetes education and management [13].
In addition, they have been associated with improved infant health outcomes [14].
Because of the client-focused, community-centric nature of CHW interventions, they may be uniquely effective at reaching vulnerable populations [15], and studies using national medical claims data suggest that efforts to improve care coordination during pregnancy targeting patient comorbidity may be cost-effective [16,17], as well. CHW intervention during pregnancy therefore presents an ideal opportunity to address chronic health conditions and meet the "triple aim" of enhancing healthcare quality, improving health outcomes, and reducing costs [18].
Despite the potential benefits of CHW intervention, there is a paucity of research on how CHWs can help pregnant women with chronic conditions have healthier pregnancies, with much of the research in this area focusing exclusively on doula support. Several states have expanded Medicaid coverage for doula services [19][20][21] based on research documenting benefits of continuous labor care for pregnant and postpartum women [22,23]. Although doulas and CHWs both provide support to women during pregnancy, doula services are typically confined to active labor and the immediate postpartum period [24].
CHWs are therefore better positioned to meet the needs of the whole woman during the perinatal period and to address health disparities in maternal health and birth outcomes.
Given that approximately four million women give birth in the US each year [25], the current lack of research on CHW pregnancy support represents a meaningful gap in the maternal care literature.
Additional research is also needed to determine which aspects of the CHW-client relationship are most salient for encouraging positive change [26,27]. Evaluation metrics for CHW-client relationship are often limited to number and type of interactions with little regard for more subjective-but equally important-metrics like the quality of the bond between the health worker and client. Documenting and understanding these less tangible aspects of successful CHW-client interactions is essential to understanding what makes CHW models effective and vital for the expanded implementation of these programs.

The Present Study
As part of a 10-year, $500 million global initiative to address maternal mortality, Merck for Mothers is supporting three innovative CHW models in the US to link pregnant women with chronic conditions to care and support services they need to have safe pregnancies and healthy lives. The objectives of this study were to identify specific features of the CHWclient relationship that facilitate these goals and to examine the impact of the program on clients. Given recent media attention to very high rates of maternal mortality in the U.S. [28], the findings of this study will be useful to inform the expansion of community-based care, including how to best help CHWs be effective in improving maternal health for lowincome women with chronic conditions.

Study Design
This qualitative study uses data from three clinical sites in the eastern U.S. implementing the Merck for Mothers-sponsored CHW programs. Clients at the study sites were primarily low-income women of color of childbearing age with chronic conditions. Table 1  [ Table 1 about here]

Data Collection
Approximately one-year post-implementation, 9 focus groups (2-4 per site) were conducted with CHWs (n = 18) and clients (n = 32). CHW and client focus groups were conducted separately. An additional 8 semi-structured interviews were conducted with clients who were unable to attend focus group sessions (total client n = 40).
All CHWs were invited to participate in focus groups. Former and current clients of the study sites who were 18 years of age or older were contacted by CHWs or other program staff to invite them to participate. Verbal informed consent was obtained from all participants prior to the beginning of each focus group and interview.

Data Analysis
Data were analyzed using a grounded theory-informed thematic approach. Interview guides addressed specific key themes, with additional themes developed during analysis of the focus group and interview data. All transcripts were coded by the primary analyst using an open coding scheme, with a subset of transcripts also coded by a second analyst.
As part of open coding, the analysts wrote memos that captured coding decisions, identified key concepts in the data, and drew connections between transcripts. Open codes were then consolidated into a smaller number of thematic codes. The coding scheme was reviewed and revised by all authors collectively. Coding and analysis were carried out using DEDOOSE qualitative analytic software [29]. Best practices for qualitative research were employed, including searching for disconfirming evidence, interviewing multiple respondents at each site for triangulation, and maintaining an audit trail to document analytic decisions.

Results
Results are organized into two main sections. The first main section discusses salient qualities of the CHW-client relationship and is comprised of three sections describing subthemes that emerged for the core concept "building trust-based relationships." The second main section describes the numerous ways this trust-based relationship impacted the health and well-being of clients.

Salient Aspects of the CHW-Client Relationship
Many participants used words such as "trust" and "like family" to describe their relationships with CHWs, attesting to the closeness of the connections formed over the course of the CHW intervention. Three key sub-themes emerged as critical to the formation of meaningful CHW-client connections: emotional attendance, authenticity, and prioritization of clients' needs.

Sub-theme 1: Emotional attendance
Emotional attendance took many forms in CHW-client interactions: Clients consistently reported that they formed strong personal bonds with CHWs as a result of CHWs' "emotional support," "listening/communication," and "just being there." For some mothers, a shared emotional and spiritual connection was comforting. This connection was particularly important for clients with few other sources of support. In general, the benevolent behaviors on the part of CHWs characterized here as 'emotional attendance' led clients to trust and feel comfortable with CHWs, which in turn enabled future interactions that more firmly established trust and closeness. This positive feedback loop, in which the trustee consistently meets or exceeds the expectations of the trustor, forms the basis of trust development in interpersonal relationships [30].
Sub-theme 2: Authenticity By definition, CHWs are members of and/or have an unusually close understanding of the community they serve. Several CHWs in this study discussed similarities between themselves and their clients. Their motivation to engage in this work stemmed, in part, from this shared understanding with clients.

Sub-theme 3: Prioritization of clients' needs
CHWs' scope of practice addresses a broad range of pregnant women's medical and social needs (i.e., instrumental, informational, emotional). Clients' needs determined the services provided, and CHWs were described as going "above and beyond" to help their clients in any way possible. The prioritization of clients' needs and flexibility in services offered based on those needs were factors mothers talked about as helping them build close, trusting relationships with CHWs.
She helps with everything, it's amazing. It's a really good service, it's for the people.
(Client, Camden) Clients described CHWs as always being present with them-whatever else they might have going on, the client felt like the CHW was fully there to support her:

She never came sad. She's always happy, always smiling. She never let her outside business interfere with us…. (Client, Camden)
CHWs' flexibility and availability-their willingness to work around a client's schedule, meet her anywhere she needed, and let her needs and priorities determine the content and timing of interactions-reinforced the sense that the client was the CHW's top priority.

CHW Impact
Women have diverse medical, as well as social and psychological, needs during pregnancy. The support they received from CHWs fell into three broad categoriesinstrumental, informational, and emotional-and, according to clients, resulted in greater engagement with the healthcare system, improved health behaviors, and reduced stress.
Multiple clients reported that CHWs provided material goods they needed for their baby or other children when obtaining those things themselves would have been burdensome or unfeasible. Such items included diapers, breast pumps, clothing, car seats, toys, and furniture.

When the baby was in the hospital, it was like 12 days, they went to my house and brought me a crib, a stroller, they brought me a car seat because I didn't have one. They brought me baby bottles, clothes. I didn't have any of that. (Client, New York City)
Beyond the provision of material goods, CHWs supported timely and appropriate access to care by assisting clients with scheduling and attending medical appointments, including by accompanying them to visits or facilitating transportation. Some clients reported that their CHW reminded them to adhere to medication regimens.

Discussion
Reports from the Institute of Medicine (2015) and the Agency for Healthcare Research and Quality (2009) have recommended expanded use of CHWs as a vital strategy to improve health behaviors and more effectively link vulnerable people to healthcare [31,32]. In addition, previous studies have demonstrated that authentic healing relationships improve outcomes among patients with comorbid chronic conditions [9]. This study identified specific features of the CHW-client relationship that facilitate this process for pregnant women, including emotional attendance, authenticity, and prioritization of clients' needs.
Both clients and community health workers view CHW programs as an approach that mitigates the burden of life stressors on pregnant and postpartum women, and supports the development of health-promoting habits during pregnancy and post-birth.
This study's findings are consistent with research indicating that a personal connection with healthcare providers is particularly important for pregnant women [8], patients with chronic conditions [9], and low-income populations [33]. Trust was a central aspect of the CHW-client relationships reported on in this study and clients were deeply impacted by their relationships with CHWs. The qualities that were found to contribute to the formation of trusting relationships-emotional attendance, authenticity, and prioritization of clients' needs-are often lacking in healthcare settings [8,34,35,36], and their absence jeopardizes the potential benefits of the provider-client relationship [8]. In particular, one study found an association between patients' perceptions of provider empathy and patient enablement-that is, the ability to understand and effectively cope with a chronic condition [37]. For pregnant women with chronic conditions, a sense of enablement, or agency, is key to developing health-promoting behaviors.
In Novick's integrative review of women's experiences with prenatal care in the US, relationships with providers were found to be of primary importance [8]. Women reported frustration and low levels of satisfaction with care when care was impersonal-for example, when they were not listened to, were treated like a "number," or were to be mechanistic and impersonal [8]. In the CHW-client model, the client's needs guide the intervention, with bi-directional communication creating trust-reinforcing feedback loops between the CHW and client. Each step of the intervention is personalized to the woman's circumstances, and client buy-in is essential to success because the interpersonal relationship between provider and patient is the engine of change. As the evidence base for this care model grows, the same tenets and principles that guide CHWinvolved care-emotional attendance, authenticity, and prioritization of clients' needsmay serve as an exemplar for transforming traditional care relationships between providers and patients.
This study has limitations. The participants were women who were actively engaged in CHW programs. The experiences described may not apply outside of the urban settings studied or for women who had access to, but may have been less engaged with, the CHW programs assessed. In the analysis, thematic saturation was achieved among Englishspeaking participants. Due to relatively small numbers of Spanish-and French-speaking clients, it is unlikely that data saturation was achieved for these women. Observations from immigrant mothers that were discussed across language groups were included.
However, specific groups of immigrants may experience challenges with the US healthcare system and derive benefits from relationships with CHWs not captured in this paper.
Nonetheless, this study contributes to a growing body of literature demonstrating that support provided by CHWs and other lay health workers is beneficial to pregnant women and provides insights into the mechanisms by which CHWs are effective.

Conclusion
CHWs serve women in multiple capacities, providing instrumental, informational, and emotional support. The roles adopted by these lay care providers, and the meaningful impact of their contributions as reported by mothers, highlight the numerous unmet needs of low-income pregnant women with chronic health conditions. The results show that CHWs are effective atbuilding meaningful, trust-based relationships with patients, that those relationships enable the prioritization of the mother's health, and that mothers perceive these relationships as leading to improvements in stress levels, emotional well-being, health behaviors, and life circumstances.
Beyond the individual-level benefits derived for clients, the use of support personnel during pregnancy is likely to be cost-saving for state Medicaid programs [38]. Future studies that examine the cost-effectiveness of CHW interventions targeting pregnant and postpartum women should include metrics to assess the quality of CHW-client interactions to ensure their greatest potential impact. Additional research is also needed to determine best practices for sustainable funding of CHW interventions so that more women may benefit from such support.

Type of organization
Community-based organization Community-based organization