Perspectives of Pediatric Community Health Workers: Roles,Successes,and Challenges

Abstract

This multicenter qualitative study described the roles of 10 pediatric community health workers (CHWs) in their own words through exploration of the role features, successes, and challenges in pediatric health care settings across three urban U.S. cities (Philadelphia, New York City, and Cincinnati). Individual, semi-structured telephone interviews were conducted. Interviews described prominent features of the pediatric CHW role, which included taking a family-centered approach to goal setting and determining support needed, ensuring family goals stayed at the center of the work, and acting as a trusted figure for families to talk openly with. CHWs described their role as rewarding, believing in the work, and feeling a sense of fulfillment, and felt successful when families had positive outcomes, including when barriers were eliminated, resources were obtained, or independence was demonstrated by families. Challenges CHWs faced in their roles included establishing trust with families, managing the ever-changing family circumstances many families experience due to socioeconomic barriers, and managing limitations of protocol and restrictions within their roles. This study demonstrated numerous considerations for CHW practice in pediatric health care settings, in addition to considerations for pediatric-specific CHW program development and management. The primary policy implication of this study included a basis for increased funding for CHW programs in pediatric health care settings. This study also demonstrated a need for further research on the change CHWs effect within child and family systems outside of health care, such as schools and child welfare agencies

Keywords

lay health advisors/community health workers child/adolescent health community intervention chronic disease social determinants of health health equity

A community health worker (CHW) is “a frontline public health worker who is a trusted member of and/or has an unusually close understanding of the community served” (American Public Health Association, 2021). In the United States, the CHW role was established to improve the health of migrant farm-workers, urban poor, and Native American and Alaska Native communities in the 1960s (Bovbjerg et al., 2013; Perez & Martinez, 2008; Taylor et al., 2017; Witmer et al., 1995). It has since been adapted to a broad array of patient groups, specifically in underserved populations with chronic conditions (Perry et al., 2014). A cornerstone element of the CHW role is linking underserved populations with health and social service systems, making this role critical to addressing the economic, social, environmental, and political challenges facing patients and families (Perez & Martinez, 2008).

Adding a CHW to the care team has been shown to improve disease management (Kangovi et al., 2017), HIV care (Chang et al., 2021), and diabetes control (Coleman et al., 2021). It has also been shown to reduce the frequency of high-cost health care encounters (Embick et al., 2021), mental health symptoms (Barnett et al., 2018), and health care utilization (Jack et al., 2017). In pediatric settings, CHWs have been shown to support families in managing chronic diseases and conditions, including diabetes (Hershey et al., 2021; Lai et al., 2021; Lipman et al., 2019, 2020, 2021), asthma (Bryant-Stephens et al., 2020), sickle cell disease (Hsu et al., 2016), obesity (Schroeder et al., 2018), and oral health (Martin et al., 2018). CHWs also have a role in detecting developmental delay (van der Merwe et al., 2019), facilitating engagement in care (Cunningham et al., 2020), supporting maternal caretaking (Stansert Katzen et al., 2020), supporting parenting practices (Luo et al., 2019), and reducing rates of preterm birth (Pan et al., 2020) and maternal depressive symptoms (Bliznashka et al., 2020).

Standardization efforts such as the CHW Core Consensus Project (C3) (Rosenthal et al., 2021), training programs including Project ECHO (Komaromy et al., 2018), and a myriad of studies examining CHW roles and skills continue to solidify the CHW role. However, there remains a gap in understanding of the key competencies and infrastructures needed to support an effective pediatric CHW program. This study aims to address this gap through elucidating experiences and challenges of CHWs working in pediatric settings.

Purpose

The aim of this multicenter qualitative study was to describe the role of pediatric CHWs using their own words, and to explore the successes and challenges experienced in this context.

Method

This study included 10 CHWs working full-time in established programs, exclusively with pediatric populations. This study was deemed exempt by the Institutional Review Board (IRB) of the Children’s Hospital of Philadelphia.

Sample and Settings

Six programs, working exclusively with pediatric populations, were identified. Program leads in each site were emailed with a description of the study, and a request for a list of the full-time CHWs to whom the interviewer could send invitations to participate. Program leads from three out of the six sites (Philadelphia, New York City, and Cincinnati) agreed to participate. All full-time CHWs were invited to participate in a voluntary, 60-minute, audio-recorded telephone interview. Interested CHWs contacted the research team directly, and managers or other team members in each program were not informed of the identity of the CHWs from their programs who agreed to participate. No compensation was provided to participants.

Framework and Construction of Interview Guide

Frameworks used to guide the development of the semi-structured interview guide were derived from Taylor et al.’s (2017) and Findley et al.’s (2012) prior work interviewing CHWs. Drawing on the Taylor et al. (2017) taxonomy of CHW characteristics, this study defined who a pediatric CHW was by exploring certain elements of their “person characteristics” (e.g., their knowledge, skills, and personal qualities) and “role characteristics” (e.g., time and continuity of worker, settings, and core tasks). CHWs ranked the skills they found useful in building trust with families, with a 5-point Likert-type scale drawn from the Findley et al. (2012) CHW- and employer-recommended CHW scope of practice and training. Categories of skills asked about included communication, interpersonal interaction, teaching, and organization. Beyond the formal frameworks, this study also sought insight on successes and challenges commonly faced by pediatric CHWs. The full interview structure is presented in Table 1.

Table 1

Structure of the Interviews With Pediatric Community Health Workers

Interview section	Description
Person characteristics
Knowledge	Information possessed by CHWs from previous work and/or life experiences
Personal qualities and interpersonal techniques	Inherent personality or behavioral qualities possessed by CHWs and/or interpersonal techniques utilized in relationship building with families
Role characteristics
Core tasks	Key functions and regular work of CHW role
Goal setting	Methods and approaches CHWs take to setting goals with families
Determining support needed	Methods and approaches CHWs take to determining type and scope of support needed by families
Successes
Successes in the pediatric CHW role	Factors related to relationship building with families and/or family outcomes that contribute to feelings of success
Challenges in the pediatric CHW role	Factors related to the role and practice environment and/or family circumstances that create challenges
Skills
Skills	Interpersonal, communication, teaching, and/or organizational skills utilized by CHWs in establishing trust and working relationships with families

Note. CHW = community health worker.

Procedures, Rigor, Analysis

Interview transcriptions were analyzed in three stages using a deductive and inductive content analysis process, as outlined by Elo and Kyngas (2008).

At the first stage, initial deductive primary coding at the framework construct level, interviews were reviewed in two dyad teams, with five interviews per team. Responses were organized into a priori groupings that fell within the constructs delineated in the Taylor et al. (2017) framework, which was also used to craft the interview guide. Both team members independently reviewed each of the five interviews and organized them into initial codes to ensure consistency, interrater agreement, and dependability of data. A full review committee convened to evaluate first-level coding, develop the coding guidebook, and resolve discrepancies in the coding process.

The second stage of coding included inductive coding of each of the framework construct “buckets” by dyadic teams, to determine emerging themes present within each construct. The third stage included full group discussion of overlapping emerging themes, those themes that were present across framework constructs. To ensure rigor, each coder independently developed second- and third-level coding and themes, and a full committee discussed final codes, identified emerging themes and subthemes, and resolved disagreements. Final inductive themes were agreed by the full study team committee, which included member-checking by a CHW site manager and two nonparticipating CHWs.

Results

All 10 CHWs worked predominantly in community-based clinic settings, conducted clinic and home visits, and served across a range of chronic disease populations (i.e., asthma, diabetes, or general pediatrics). The median age was 40 years (range = 25–53). All CHWs self-identified as female, eight as African American, and two as Hispanic.

Person and Role Characteristics: Who Are Pediatric CHWs and What Do They Do?

The themes that emerged on CHW person and role characteristics were subdivided into the overarching categories of inquiry: knowledge, personal qualities and interpersonal techniques, core tasks, goal setting and determining support needed, successes, and challenges.

Knowledge

Addressing Socioeconomic Barriers With the Care Team

Several interviewees described the need to educate and remind their colleagues of the socioeconomic and nonmedical barriers many patient families were facing. One CHW described frequently “reminding [the] medical team that social barriers prevent famil[ies] from addressing the[ir] medical [issues].” Another CHW described instances where “patients are facing many social barriers, [and it] can be overwhelming for providers.” A CHW explained there were times when “medical providers feel like they can’t help [because they] don’t understand what [a] family is going through,” adding, “we really have to do better . . . making medical homes more family-friendly, and not so much as measurements and numbers.”

Personal Qualities and Interpersonal Techniques

Active Initiation and Accommodation

CHWs described interpersonal techniques used to build trust with families, most having cited actively initiating contact with families through frequent check-ins. They also described meeting families in environments where they were most comfortable, usually in homes or community settings.

Validating Family Autonomy

CHWs also described challenges validating families’ decision-making autonomy while avoiding “prying” or “making unnecessary invasions” to their personal lives.

Using Relatable Language and Being Relatable

Most CHWs described using relatable language and human connection as means for establishing trust. Examples included “show[ing] [families] you’re human,” “giv[ing] everyone a clean slate,” “looking relaxed and not “too professional,” and “letting families know they are not the only ones going through things.”

Establishing Boundaries Through Explanation

Most CHWs established boundaries with children and families by setting expectations regarding the scope of their role at the onset of the relationship, such as “explain[ing] why they are there,” “branding yourself” as being there to help, and upholding specific work hours.

Core Tasks (Social Support)

Prioritizing Families’ Goals

Prominent features of the pediatric CHW role were “meeting families where they were,” taking a “family-centered approach,” “ensuring family goals stayed at the center of the work,” and acting as “someone [families] could trust and talk openly with.”

Obtaining Resources

All CHWs cited connecting children and families to resources in the community, including resources for housing, food, behavioral health, literacy, hobbies for both parents and children, marriage counseling, and/or parenting workshops. CHWs also supported families getting to appointments, both health care–related and in the community.

Promoting Skill-Building

Most CHWs reported promoting skill-building for parents and children. This included navigating conversations with various agencies, helping to prioritize and start goals, helping families advocate for themselves to become independent, and supporting the development of organizational skills.

Advocating for Families

Being a family advocate was identified as a key role of the pediatric CHW. Advocacy included reconciling families with their care teams and bridging gaps in communication, helping families interpret language used by the care team, advocating for families when they were fearful, ensuring the child understood their diagnosis, educating parents and children about medications, and helping parents get the best health care for themselves and for their children.

Supporting Efficient Health Care Utilization

Most CHWs navigated systems with families, including helping to obtain community-based resources, scheduling appointments, or facilitating parents’ own health care. CHWs focused on reducing parents’ and children’s health care utilization, including decreasing emergency department utilization, helping patients with medical and social provider expectations, and re-establishing contact with patients who became “lost in the system.”

Goal Setting and Determining Support Needed

Facilitating Conversation

Many CHWs reported using conversation as a tool for learning about families’ perspectives. Success was identified in using open-ended questions and prioritizing what parents identified as the most important issues.

Observing Family Environments

Some CHWs used observation to determine support needed. This included observing the entire home environment, as described by a CHW:

Most of the time, from what I’m seeing, is that if the child isn’t doing well, the parent isn’t doing well. So [I] try to see what’s going on with the parent in order to get the child, you know, the help that they need.

CHWs highlighted the importance in considering all aspects of a family’s life when assessing needs, such as assessing for “safety, drugs, cleanliness, infestation, children’s behaviors, tone of household, [and] environment.”

Utilizing Formal Assessment Tools

Some CHWs used formal assessment tools with families to assess environmental triggers for health conditions (e.g., asthma), social determinants of health screening, and home assessment.

Following Care Team Recommendations

Some CHWs noted that needs assessments and goals identified were sometimes based on feedback from the care team. Other CHWs let families lead the goal-setting process, so that “. . . the families can get what they want, and the providers can get what they want.”

Encouraging Family-Led Priority Setting and Tracking

Some CHWs noted they did not formally set goals with every family, but rather helped them “navigate certain things and helped them get started,” as well as “encourag[ed] parents to set goals for themselves,” while tracking and monitoring progress.

What Makes a Pediatric CHW Successful?

Seeing Families’ Progress

Some CHWs felt successful when families had positive outcomes. These outcomes included eliminating a barrier or finding resources, when families were “able to move on their own,” or when families demonstrated new knowledge, such as “know[ing] [the] hospital system better,” “nam[ing] child[ren’s] medication,” and “know[ing] how to schedule appointments.”

Building Relationships With Families

Familiarity with the stages of relationship development between the CHW and the family was also integral to success. In particular, some CHWs explained that families were often “weary,” “leery,” “stand-off-ish,” and generally distrustful of them at the beginning of the relationship. CHWs were perceived by families to be professionals—acknowledging that they were “friendly” with families “but not [the families’] friend.” However, once trust was built, CHWs developed meaningful relationships, describing a transition in the relationship that would often feel like a family friendship. Some reported being invited for meals with families. CHWs explained that parents appreciated that the CHWs “are real and honest,” and “know that CHWs are there to help.” As one CHW described, “the CHW does not sugar coat,” and families often appreciated this direct approach. In addition, some families viewed CHWs as relatable because they had similar life experiences, which lead to personal knowledge of social systems. CHWs received frequent compliments acknowledging their support and skill set.

Feeling Gratified

CHWs described their role as rewarding—believing in the work and feeling a sense of fulfillment. For some even a “therapeutic experience” occurred, described by one CHW as “[I] love the people, love the stories, [and] love the positive change.”

What Challenges Are Faced by Pediatric CHWs?

Addressing Social Barriers

The most common challenges described were the social barriers families faced—some being so complex, they were difficult for the care team to understand. One CHW described that there was a “conflict between the goals of the hospital and family” adding that

[the goals] are kind of like clashing together because the hospital wants one thing, but these families are struggling with so many things on the outside. It’s like I can’t bring my child to the doctor if I’m worried about, “Is my child going to have a roof over their head tomorrow?”

“Another frequently identified barrier was limited resources available in the community, and the frustration of not being able to “do anything for them,” as one CHW said. They added that this feeling of helplessness was like a “knife to the heart . . . when they tell you things that you want to help them with but you just can’t.” Equally, socioeconomic barriers often lead to ever-changing family circumstances, lack of stability, frequent relocations, changing phone numbers, and running out of minutes, which contributed to changing family goals throughout the program.

Establishing Trust With Families

Most CHWs also mentioned establishing trust with families as a challenge, particularly due to deep mistrust of the health care system. Examples of this included some parents “thinking they [CHWs] are [the child welfare system],” viewing community hospitals “like a bully in the community,” and the “patients knowing that CHW will share information with providers.” In addition, some families were cited as being “stand-off-ish” due to “not understanding the CHW role.”

Managing Inconsistent Family Engagement

Some CHWs cited the difficulty of achieving success with certain families due to variability in levels of engagement. Families often dropped-off from the program, did not follow through with goals, or were simply “not ready to change.”

Working Within Limitations of CHW Role

Another challenge included limitations that resulted from protocols and role restrictions. On occasion, this prevented them from being able to address certain barriers families faced. Examples include not being able to drive patients, not having access to the electronic medical record or health records, difficulty meeting with families privately within the clinic, and having to rely on others for appointments or medical information.

Navigating Uncertainty of New Programs

A unique challenge experienced by pediatric CHWs was the lack of established structure of some of the programs. This occurred predominantly in programs that were early in their development. Some CHWs were growing and learning as the program continued to evolve. There was significant variability in roles across programs, locations, and populations.

Experiencing Burn-Out

One CHW cited burnout as a major challenge and described the work as “emotionally hard.”

Skills

Building on the Findley et al. (2012) CHW- and employer-recommended scope of practice and training for CHWs, CHWs were asked about the degree to which specific interpersonal, communication, teaching, and organizational skills, when applied, helped them establish relationships with children and families. Skills were ranked on a 5-point Likert-type scale (1 = does not help, to 5 = helps a lot). For interpersonal skills, the ability to establish trust scored highest (mean score = 5). For communication skills, advocacy scored highest (mean score = 5). For teaching skills, safety procedures at home visits scored highest (mean score = 4.9). For organizational skills, the highest scored skills were tied between time management and scheduling and documentation and data collection (mean scores = 4.9). Individual and mean scores for each skill type are presented in Table 2.

Table 2

Skills Used by Pediatric Community Health Workers in Establishing Relationships With Families

Skill used in establishing relationships with families	Mean score	Range
Interpersonal skills
Ability to establish trust	5	5–5
Bilingual (services)	3.9	1–5
Multicultural competency	4.7	4–5
Provision of social support for clients	4.9	4–5
Communication skills
Advocacy	5	5–5
Community organizing	4.2	2–5
Outreach and enrollment	4.7	3–5
Information sharing	4.8	4–5
Listening	4.9	4–5
Setting goals or making plans with clients	4.9	4–5
Informal counseling	4.3	2–5
Ability to lead group discussions or support groups	4.4	3–5
Facilitating workshops and group activities	4.1	1–5
Case management and referrals (including insurance)	4.6	3–5
Medical interpretation	4.5	2–5
Interacting with physicians/health care system	4.9	4–5
Teaching skills
Health education skills	4.6	2–5
Role-playing and modeling health behaviors	4.4	3–5
Adult learning techniques	4.4	3–5
Chronic disease knowledge and management	4.0	2–5
Home assessment and advice on daily routines	4.5	3–5
Safety procedures at home visits	4.9	4–5
Organizational skills
Computer skills (office, email, web)	4.2	3–5
Time management and scheduling	4.9	4–5
Documentation and data collection	4.9	4–5
Interacting with supervisors	4.7	3–5
Mentoring other CHWs	4.6	3–5
Research (e.g., human subjects, consent)	4.4	3–5

Discussion

This study provides insight to the unique role of CHWs in reducing pediatric and intergenerational health inequities, and serving as agents of positive social change in their communities. Unlike other studies of pediatric CHWs, this study did not determine the effect of CHWs on health outcomes or utilization. Rather, it describes perspectives of the CHWs on the value of this work, as well as the roles pediatric CHWs have in working with children, parents, and families.

CHWs bring intimate knowledge of families to health care settings. This knowledge is acquired through working with families within their environments, and often being members of the communities they serve. Our observation that this intimate knowledge is an important factor in relationship and rapport building is congruent with prior studies (Jacobson et al., 2012; Lucio et al., 2012). Such knowledge is critical to bolstering the care team’s understanding of the challenges facing families that represent barriers to their medical care, which CHWs indicate is often lacking. Specifically, in a pediatric setting, this contextual knowledge also informs the understanding of families in related systems, including the education and child welfare systems. The CHWs’ knowledge and relationships provide a unique perspective. These can inform the care team of a family’s context and barriers and, similarly, can convey information from the care team back to families. In addition, the similar lived experiences of CHWs and families, coupled with their knowledge of the medical systems, create a relational experience wherein CHWs can fill gaps of understanding on both sides of the clinical relationship.

The sensitive nature of the CHW’s role makes achieving successful outcomes reliant on certain personal qualities. Being friendly, compassionate, and nonjudgmental is essential to effectively communicate and facilitate change in patients and families. Our finding that CHWs used compassion and open-mindedness to establish trust aligns with prior studies on CHW qualities required to deliver effective support (Rosenthal et al., 2021; Taylor et al., 2017). Another important skill of the CHW includes being able to sensitively acknowledge and navigate families’ feelings of mistrust in an effort to best serve them. It is not surprising that CHWs ranked their ability to establish trust highest among interpersonal skills as it relates to establishing working relationships with families (Luo et al., 2019). Establishing trust is critically important when working in communities that have been historically misunderstood and marginalized by the health care system.

This study highlights the unique focus of pediatric CHWs on meeting the needs of parents to improve health outcomes for the child. One CHW described this directly: “Most of the time, from what I’m seeing, is that if the child isn’t doing well, the parent isn’t doing well.” In addition, the impact of CHW work often extends beyond the family. One CHW described a “ripple effect” of their work on the community by stating “When you help one person, they pass it along to others [in their community].”

The primary strength of this study is that it provides a direct perspective on the role of pediatric CHWs from the CHWs doing this work, across three different geographic locations within the United States. This study also utilized frameworks to construct the interviews used to ascertain this experience. A limitation of this study is the small sample size, which may limit generalizability of results. However, even within this small group, common themes and experiences were identified.

Implications for Practice

This study provides context for the continued development of pediatric CHW programs by highlighting distinct features of the role. CHWs bring an understanding of the community to the care team. This can facilitate greater mutual understanding and interaction between health care systems and marginalized populations. This study’s findings contribute to the evidence for expanding pediatric CHW programs and building on experiences of CHWs in their implementation. As racial and socioeconomic disparities in clinical outcomes continue to widen, CHWs represent an opportunity to rethink the composition of the standard multidisciplinary team and introduce initiatives that will serve to ameliorate these health care inequities.

Footnotes

Authors’ Note:

The authors are grateful to Dr. Tyra Byrant-Stephens and Dr. Sally Findley for their reviews, feedback, and contributions to the development of this study’s interview guide and methodological approach.

ORCID iDs

Hanna E. Rogers

Kristy Anderson

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