community health workers qualitative research

• Introduction
• Conclusions
• Article Information

eMethods 1. Interview Guides

eMethods 2. Detailed Description of Themes

eMethods 3. Additional Individualized Management of Person-Centered Targets (IMPaCT) Quotes

eFigure. Frequently Used Descriptors of Community Health Workers

Data Sharing Statement

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Schriger SH , Knowles M , Daglieri T , Kangovi S , Beidas RS. Barriers and Facilitators to Implementing an Evidence-Based Community Health Worker Model. JAMA Health Forum. 2024;5(3):e240034. doi:10.1001/jamahealthforum.2024.0034

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Barriers and Facilitators to Implementing an Evidence-Based Community Health Worker Model

• 1 Department of Psychology, University of Pennsylvania, Philadelphia
• 2 Perelman School of Medicine, University of Pennsylvania, Philadelphia
• 3 Penn Center for Community Health Workers, Philadelphia, Pennsylvania
• 4 IMPaCT Care, Philadelphia, Pennsylvania
• 5 Department of Medical Social Sciences, Feinberg School of Medicine, Northwestern University, Chicago, Illinois

Question   What barriers and facilitators are associated with implementing an evidence-based community health worker (CHW) model?

Findings   In this qualitative study examining the perspectives of 39 individuals involved in implementing a CHW model, salient implementation barriers included difficulties with clinical integration and financial challenges, and facilitators included the model’s emphasis on relationships and its evidence-based components and strategies.

Meaning   These findings suggest that implementation barriers and facilitators may offer important policy and practice implications for how best to support CHW programs.

Importance   Community health worker (CHW) programs may improve health outcomes, increase quality of life, and reduce hospitalizations and cost of care. However, knowledge is limited on the barriers and facilitators associated with scaling evidence-based CHW programs to maximize their public health outcomes.

Objective   To identify barriers and facilitators to implementing an evidence-based CHW model.

Design, Setting, and Participants   This qualitative study examined perspectives of Individualized Management of Person-Centered Targets (IMPaCT) program staff (health system leaders, program managers, and community health workers) and patients receiving the intervention between March 9, 2020, and July 22, 2021, at 5 institutionally and geographically diverse health systems across the US. The collected data were analyzed between December 1, 2021, and April 27, 2022. Program staff were recruited via purposive sampling, and patients were recruited via convenience sampling.

Intervention   The disease-agnostic IMPaCT CHW model includes a standardized implementation approach and a structured set of theory-informed intervention components to create and achieve individualized action plans.

Main Outcomes and Measures   Interview guides were informed by the Consolidated Framework for Implementation Research. A rapid qualitative analytic technique was used to identify key themes, which were categorized into barriers and facilitators associated with framework ecological domains.

Results   Of a total 41 individuals invited, 39 agreed to participate (95% response rate; mean [SD] age, 45.0 [12.6] years; 30 women). General barriers included economic and policy constraints, including insufficient funding for CHW programs, clinical integration challenges, and CHW difficulty with maintaining boundaries. Program-specific barriers included insufficiently tailored materials for certain populations and upfront and ongoing program costs. General facilitators included CHWs’ interpersonal skills and life experiences. Program-specific facilitators included the model’s strong evidence base, supportive implementation team, and program design that enabled relationship building and engagement. Additional themes were cited as both barriers and facilitators, including the COVID-19 pandemic, organizational leadership, IMPaCT training, and program fidelity.

Conclusions and Relevance   These findings suggest growing recognition of the importance of CHWs to improving health equity and population health. Barriers identified point to important policy and practice implications for CHW programs more broadly, including the need for continued attention to improving clinical integration and the need for sustainable program financing to preserve the longevity of this workforce.

Community health workers (CHWs) are frontline public health workers who are trusted members of the communities they serve. 1 Broadly, CHW programs have been shown to improve a wide range of outcomes, including population health, 2 - 5 patient experience of care, 2 , 6 , 7 health equity, 8 - 10 and reduced health care costs. 11 - 16 The Individualized Management of Person-Centered Targets (IMPaCT) model, tested in 3 randomized trials, 2 , 6 , 7 has been found to improve health outcomes, increase quality of care, and reduce total hospital days, while demonstrating a $2.47:1 return on investment within 1 year. Given the effectiveness of this model, elucidating potential barriers and facilitators to implementation is an important next step in the process of scaling this approach in health care delivery and can also produce generalizable insights for other evidence-based CHW programs.

The IMPaCT model uses a standardized implementation approach spanning 3 stages: preimplementation (partner-engaged planning, feasibility assessment, and adaptation), implementation (recruitment and hiring support, comprehensive training, standardized work practice manuals, and ongoing technical assistance to address implementation barriers), and sustainment (ongoing learning opportunities for CHWs and program leadership and tailored expansion support). Additionally, IMPaCT includes a structured set of theory-informed intervention components: community-based CHW hiring strategies (eg, recruitment through advertisements and presentations provided at local community centers, churches, and retail stores); standardized intervention durations, caseloads, and protocols for supervision and safety; clinical integration strategies that balance time spent in clinical and community settings (eg, physician’s office, patient’s home); ongoing performance assessment; and adaptability across diseases, settings, and populations. Unlike many CHW models, IMPaCT is disease-agnostic. When delivering IMPaCT, CHWs prioritize building strong relationships using person-centered practices and use a semistructured interview guide to understand patients’ priorities and the factors associated with their health, collaborate with patients to create individualized goals and action plans, and provide tailored support to patients in executing those action plans.

While IMPaCT is a leading evidence-based CHW model nationally, 2 , 6 , 7 , 11 factors associated with its implementation have yet to be studied. To achieve maximal public health benefit and to contribute to the broader literature on implementing, scaling, and sustaining evidence-based CHW programs, examination of implementation barriers and facilitators (ie, determinants) is needed. The Consolidated Framework for Implementation Research (CFIR) 17 , 18 provides a theoretical framework to guide understanding of implementation determinants across multiple domains. The primary aim of this study was to understand implementation determinants by soliciting perspectives of individuals from multiple constituent groups involved in IMPaCT implementation at 5 institutionally and geographically diverse health care settings.

All procedures used for this qualitative study were approved by the institutional review board at the University of Pennsylvania. All participants provided verbal consent for participation and the sharing of their deidentified data for reasearch purposes, and no participants withdrew from the study following informed consent. The Standards for Reporting Qualitative Research ( SRQR ) were followed for reporting results. 19

Participants included multilevel program staff (health system leaders, program managers, and CHWs) and patients at 5 health systems that had launched the IMPaCT program in the previous year. Sites were selected based on geographic and institutional diversity ( Table 1 ). Our target sample size was informed by empirical literature on the sample size needed to reach thematic saturation. Previous literature suggested that saturation is typically reached within 9 to 17 interviews. 20 We anticipated that a sample size of 12 interviewees per constituent group would be a reasonable target. We used purposive sampling to recruit program staff and convenience sampling to recruit patients. Health system leaders were identified by the IMPaCT implementation team (M.K., T.D., and S.K.) and connected to the implementation evaluation team (S.H.S. and R.S.B.) via email. All health system leaders were asked to participate. Leaders then connected the implementation evaluation team to program managers via email. All managers were invited to participate. Managers were asked to identify 1 champion CHW (described as particularly enthusiastic, diligent, committed to their role, and motivated to go above and beyond). Up to 3 additional CHWs at each site who had been in their roles for at least 6 months were also invited at random to participate. Finally, CHWs provided a list of patients who consented to participate in an interview. Patients were randomly selected from this list and invited to participate via phone, with up to 3 participating from each site. While we anticipated that approximately 2 to 4 CHWs and patients per site would be sufficient to reach thematic saturation, we remained open to conducting additional interviews within these groups if saturation was not reached.

The evaluation team developed a semistructured interview guide for each participant group based on the 5 ecological domains of the original CFIR 17 (interview guides provided in eMethods 1 in Supplement 1 ). Interviews with program staff emphasized each stage of IMPaCT implementation, while interviews with patients focused on their experiences as intervention recipients.

Although we used the original CFIR 17 to develop interview guides, an updated CFIR 18 was published prior to data analysis. We consulted both versions and use language from the updated CFIR 18 in this article. The 5 CFIR domains include innovation (eg, the IMPaCT intervention), outer setting (eg, broader sociopolitical context), inner setting (eg, specific organization in which IMPaCT is being implemented), individuals (eg, program staff implementing IMPaCT, patients participating in the program), and implementation process (eg, strategies used to implement IMPaCT).

Three implementation evaluation team members (not involved in the development of IMPaCT and including S.H.S. and R.S.B.) conducted interviews between March 9, 2020, and July 22, 2021. Interviewers had a variety of training backgrounds (advanced clinical psychology doctoral student; implementation scientist and psychologist; advanced baccalaureate student research assistant) and had no previous relationship with interviewees. Interviews were conducted via telephone and audio recorded and lasted approximately 30 to 60 minutes. Interviewees were briefed on confidentiality at the start of each interview and informed that the interviewer was not part of the IMPaCT implementation team. At the end of each interview, participants were asked to provide demographic information, including their age, sex, race, and ethnicity. Participants self-identified their race and ethnicity based on standard National Institutes of Health categories (American Indian or Alaska Native, Asian, Black or African American, Hispanic, Native Hawaiian or Pacific Islander, White) and could select multiple options or decline to answer. Race and ethnicity were included among other demographics to better capture the representativeness of the sample. Interviewees received $30 for participating. Interviews were transcribed for analysis, and interviewers met regularly to discuss themes and thematic saturation.

The collected data were analyzed between December 1, 2021, and April 27, 2022. A rapid qualitative analytic technique 21 - 24 was used to identify key themes within and across interviewee groups. A structured summary template was created using key elements from the interview guides to organize and condense data based on CFIR domains. We used an integrated (ie, both deductive and inductive) approach to data analysis. While the 5 ecological domains of the CFIR were used to organize interview guides and structure themes, we used an inductive, emergent, open-coding approach to the themes themselves without any predetermined categorization. Three implementation evaluation team members (including S.H.S.) participated in the initial coding of interviews, during which transcripts were synthesized into summary sheets. Team members kept memos during the analytic process and met weekly to discuss insights and patterns and to prevent drift. In line with best practices, at the start of the analytic process, all coders double-coded the same subset of transcripts (4 interviews [10%]) to establish a consistent coding practice and review any discrepancies that arose as well as address questions about the coding process. Coders then evenly divided and coded the remaining interviews. Once all interviews were coded, completed summary sheets were transferred into matrix displays by the main coder (S.H.S.) and categorized into barriers and facilitators within each CFIR domain for each respondent group. Matrices for each group were then compared to determine cross-cutting themes and explore differences across groups. Once all interviews were coded, completed summary sheets were transferred into matrix displays within Microsoft Excel, version 16.81 (Microsoft Corporation) by the main coder (S.H.S.) and categorized.

Of the 41 individuals contacted, 39 (11 leaders, 4 managers, 12 CHWs, 12 patients) agreed to participate (95% response rate), including 30 women and 9 men. The mean (SD) age of the sample was 45.0 (12.6) years. In total, 15 participants identified as Hispanic and/or Latino, and 1 identified as American Indian or Alaska Native, 2 as Asian, 10 as Black or African American, and 27 as White (some participants selected >1 race) ( Table 2 ). We found sufficient overlap among responses to suggest that thematic saturation had been reached and, thus, did not conduct additional interviews. Here, we present the most salient themes from each CFIR domain. Salience was determined by extent of endorsement both within groups (eg, noted by multiple CHWs) and across groups (eg, noted by both CHWs and managers). We indicate whether each theme was viewed by participants as a barrier, facilitator, or, in some cases, both. We present aggregated results across participant groups because, apart from perspectives on clinical integration, there were no divergent findings between groups. Themes and illustrative quotes are provided in Table 3 , a detailed description of themes is provided in eMethods 2 in Supplement 1 , and additional quotes are provided in eMethods 3 in Supplement 1 . Table 4 details factors across the domains of the CFIR that may lead to CHW burnout.

Participants cited high upfront and ongoing program costs as an implementation barrier. Additionally, although materials were designed to be flexibly adapted, some interviewees felt that they were not sufficiently applicable to specific populations (eg, undocumented patients, non-English speakers). At times, CHWs were called upon to assist with adapting materials given their deep understanding of patient populations. The IMPaCT model’s strong empirical support and its highly structured design were cited as strong implementation facilitators.

The broader national economic and political climates were cited as a barrier to implementation both in terms of their association with implementing IMPaCT (eg, budget cuts and limited Medicaid and Medicare reimbursement) and with the patient populations served by IMPaCT (eg, immigration policies). Interviewees also described how the acute period of the COVID-19 pandemic exacerbated existing challenges (eg, increased financial strain and widened disparities) and created new challenges (eg, shift to a virtual format). However, participants also noted that this acute period facilitated greater team camaraderie and created opportunities for new patient service types and modalities.

Clinical integration, or the extent to which CHWs were able to embed themselves within clinical settings and collaborate with other health care professionals, was cited as a barrier. Despite IMPaCT’s emphasis on facilitating clinical integration, CHWs and other program staff reported disrespect and skepticism of the CHW role from other health care professionals (eg, social workers and case managers). In contrast, patients did not report perceiving clinical integration challenges, describing their care team as a united front.

Organizational leadership buy-in was viewed as highly related to implementation success; unsupportive leadership was hard to overcome, while supportive leadership strongly facilitated successful program implementation. Interviewees across leader, manager, and patient groups lauded CHWs for their empathy, loyalty, genuineness, trustworthiness, and passion, among other qualities (word cloud of frequently used descriptors provided in the eFigure in Supplement 1 ). The IMPaCT implementation team members were praised for their enthusiasm, knowledge, and dedication and cited as instrumental to implementation success.

Participants highlighted challenges related to maintaining professional boundaries, which were exacerbated by the pandemic. Some CHWs struggled to end relationships with patients, who often continued to contact them beyond their official program end date, and some reported reluctance to take time off from work due to concern for patients who expressed lack of comfort with other health care professionals. Overall, IMPaCT training was highly praised, although several CHWs indicated a need for additional training in mental health. Fidelity to the IMPaCT model was cited as both a barrier and facilitator. Although system constraints prohibited some sites from achieving fidelity to certain model components (particularly, recommended documentation software and hiring practices), participants typically indicated that fidelity to the IMPaCT model facilitated program success.

This qualitative study examined barriers and facilitators to implementing IMPaCT, a leading evidence-based CHW model, across 5 institutionally and geographically diverse health systems. Although interviews were specifically focused on IMPaCT, this model was developed based on best practices within the literature and shares characteristics with many other evidence-based CHW programs. 25 - 27 Therefore, we view many of these findings as relevant to programs beyond IMPaCT. Our findings add to the limited but growing literature on US-based CHW programs, which operate within a unique set of structural constraints and challenges, including regulatory matters related to credentialing and financing. One key finding was that all constituent groups identified barriers experienced by CHWs across ecological domains, signaling the importance of attending to the needs of this emerging workforce within health care delivery. These results may guide future research and policy development and may aid in long-term sustainment of IMPaCT and other US-based CHW programs.

Interviewees across constituent groups identified a number of barriers impeding implementation that, though focused specifically on the IMPaCT model, may be generalizable to other CHW programs, including challenges with clinical integration and financial barriers. Despite the focus on clinical integration within the IMPaCT model, participants noted that the value of CHWs was often underrecognized within health systems. Consistent with previous literature, 28 , 29 the CHW role was often misunderstood by other health care professionals, leading CHWs to feel disrespected. Also consistent with previous literature, 30 , 31 interviewees highlighted challenges associated with finances, including program costs (inclusive of overall operational costs of running a CHW program combined with specific IMPaCT-related costs) and lack of secure funding, making program sustainment precarious and, at times, leading to challenges with fidelity, even in the face of strong return on investment associated with the program.

Despite implementation barriers, participants highlighted several facilitators, 2 of which were emphasized. First, interviewees noted how the IMPaCT model prioritized and enhanced relationships, including those between the health system leaders and the IMPaCT implementation team (eg, during training and consultation), within the health system’s IMPaCT delivery team (eg, between CHWs and their managers, among CHWs), and between CHWs and patients (eg, the IMPaCT model is longer and involves more in-depth contact between CHWs and patients than some other programs), thus overcoming some of the barriers to health experienced by marginalized communities. 32 - 34 While IMPaCT’s emphasis on longitudinal, patient-centered support is not unique among CHW models, it does distinguish IMPaCT from other social determinants of health–focused interventions led by CHWs, such as screen-and-refer models that prioritize quick connection to resources and models focused on health education and adherence to specific diagnostic procedures or treatments (eg, cancer screening, appointment follow-up, medication adherence). Some interviewees highlighted that the emphasis on in-depth relationships within the IMPaCT model sets it apart from other CHW programs and contributes to high levels of satisfaction among staff in their roles and patients with the services provided. This emphasis on relationship building is consistent with the broader literature, suggesting that an emphasis on rapport building and relationships may facilitate patient engagement. 35 Second, participants highlighted IMPaCT’s program components and implementation approach, consistent with best practices in the field, 36 , 37 as robust facilitators of success.

Across all 5 domains and from the perspectives of all constituent groups, a number of burdens within the CHW workforce were identified, many of which may be associated with other CHW programs. First, CHWs are individuals who are selected for their personal characteristics, including empathy, passion, and a desire to help others. 38 Given these qualities, CHWs may be prone to taking on additional responsibilities requested by program staff and patients, especially if they perceive that health systems are unable to meet patients’ needs. 39 Second, in the context of the COVID-19 pandemic, CHWs faced changing work responsibilities, diminished boundaries with patients, funding uncertainty, and exposure to situations for which they felt they had insufficient training. Since many CHWs share minoritized and marginalized identities with their patients, they are often affected by the same social determinants of health, leaving them vulnerable to additional stressors. 40 On top of these challenges, CHWs were often met with clinical integration barriers within health systems, where they felt misunderstood, unwelcome, and undermined. Finally, an additional challenge specific to IMPaCT was the need to tailor the materials to the target patient population, a task that at times fell on CHWs given their deep cultural understanding and language skills. These barriers may be associated with burnout and the high turnover rate of CHWs ( Table 4 ). 41 There is growing literature on the importance of attending to CHW workforce needs, though much of this work has taken place outside the US. 42 Given the very limited literature on burnout among US-based CHWs, more work is needed. 43 - 46 Notably, health care professional burnout is a broader issue within the US, as highlighted in a recent advisory by the Office of the Surgeon General. 47

These findings can be leveraged to inform meaningful future research and policy work to support CHWs and maximize their contributions to public health. For example, despite IMPaCT’s emphasis on clinical integration, both program leadership and CHWs identified substantial challenges with integration. Strategies to mitigate this barrier may involve providing formalized education to other health care professionals (eg, physicians, social workers, and nurses) about the CHW role, creating standardized guides on how best to collaborate with CHWs, and developing policies for integration at the organizational level. 48 - 50 These results also point to challenges with sustainable program financing. While there is no quick fix for structural and systemic barriers within the outer setting, including the financial barriers identified, the salience of this barrier within our study and the broader literature underscores the need for continued advocacy and policy work to make CHW programs financially sustainable, such as through Medicaid and Medicare reimbursement. 51 A recent Centers for Medicare & Medicaid Services rule allowing for Medicare reimbursement for services provided by CHWs, effective January 1, 2024, may help to mitigate this barrier. 52 Future work should examine perspectives of individuals across the implementation and delivery spectrum regarding the extent to which this ruling may ameliorate financial barriers.

Our study has several limitations. First, selection bias may have resulted in differences between leaders, managers, CHWs, and patients who participated in interviews and those who did not. For example, patients whose contact information was provided by CHWs may have been more engaged or satisfied with the program than the average patient. Second, since the implementation evaluation team was affiliated with the same institution as the IMPaCT implementation team, social desirability biases may have influenced the results. Finally, this study took place during the first 15 months of the COVID-19 pandemic, which may make our findings less generalizable to a nonpandemic context.

This study captures perspectives from individuals across multiple geographically diverse health systems about the implementation and delivery of the IMPaCT CHW model. While these findings are specifically based on implementation of 1 evidence-based CHW model, the barriers and facilitators identified may be relevant to CHW models more broadly. Our findings point to the importance of the emphasis on relationships within IMPaCT, as well as of the structured, patient-centered program design. They also point to potential threats to sustaining IMPaCT and similar programs, including clinical integration challenges, financial barriers, and burdens on the CHW workforce that may lead to burnout over time. Given that CHWs cannot transform health systems on their own, larger system-level change is needed to address extant challenges and prevent the identified barriers from undermining the potential contribution and reach of the CHW workforce.

Accepted for Publication: January 5, 2024.

Published: March 8, 2024. doi:10.1001/jamahealthforum.2024.0034

Open Access: This is an open access article distributed under the terms of the CC-BY License . © 2024 Schriger SH et al. JAMA Health Forum .

Corresponding Author: Simone H. Schriger, MA, Department of Psychology, University of Pennsylvania, 425 S University Ave, Philadelphia, PA 19104 ( [email protected] ).

Author Contributions: Ms Schriger and Dr Beidas had full access to all of the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis. Drs Kangovi and Beidas contributed equally as co–senior authors.

Concept and design: All authors.

Acquisition, analysis, or interpretation of data: Schriger, Knowles, Daglieri, Beidas.

Drafting of the manuscript: Schriger, Knowles, Daglieri.

Critical review of the manuscript for important intellectual content: Schriger, Knowles, Kangovi, Beidas.

Statistical analysis: Schriger, Beidas.

Obtained funding: Kangovi.

Administrative, technical, or material support: Knowles, Kangovi, Beidas.

Supervision: Beidas.

Conflict of Interest Disclosures: Ms Knowles reported receiving personal fees from the National Committee for Quality Assurance outside the submitted work. Dr Beidas reported being a principal owner of Implementation Science & Practice, LLC, and receiving royalties from Oxford University Press, consulting fees from Optum Behavioral Health and OptumLabs, and serving on scientific advisory boards for the AIM Youth Mental Health Foundation and Klingenstein Third Generation Foundation outside the submitted work. No other disclosures were reported.

Funding/Support: This study was funded through Dissemination and Implementation Award DI-2018C2-13000 from the Patient-Centered Outcomes Research Institute.

Role of the Funder/Sponsor: The funder had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.

Disclaimer: The statements in this publication are solely the responsibility of the authors and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute, its board of governors, or its methodology committee.

Data Sharing Statement: See Supplement 2 .

Additional Contributions: The authors acknowledge the following individuals for their assistance with data collection and/or analysis: Kamal A. Suleiman, BA, University of Pennsylvania, and Jasmine Warren, Howard University. Both individuals were compensated as paid summer research assistants at the University of Pennsylvania, although they did not receive additional compensation for their contributions to this study.

• Open access
• Published: 10 May 2023

Community Health Teams: a qualitative study about the factors influencing the decision-making process

• Lisa W. Natkin 1 ,
• Eline van den Broek-Altenburg 1 ,
• Jamie S. Benson 1 &
• Adam Atherly 2  

BMC Health Services Research volume  23 , Article number:  466 ( 2023 ) Cite this article

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Metrics details

The purpose of this study was to explore the factors influencing how individual Community Health Teams (CHTs) make decisions about what services to offer and how to allocate their resources.

We conducted thirteen semi-structured interviews with all 13 CHTs program managers between January and March, 2021. We analyzed interviewees descriptions of their service offerings, resources allocation, and decision-making process to identify themes.

Four major themes emerged from the interview data as factors influencing community health team program managers’ decision-making process: commitment to offering high-quality care coordination, Blueprint’s stable and flexible structure, use of data in priority setting, and leveraging community partnerships and local resources.

Conclusions

Community-based CHTs with flexible funding allowed programs to tailor service offerings in response to community needs. It is important for teams to have access to community-level data. Teams are cultivating and leveraging community partners to increase their care coordination capacity, which is focus of their work. CHTs are a model for leveraging community partnerships to increase service capacity and pubic engagement in health services for other states to replicate.

Peer Review reports

Community Health Teams (CHTs) have been widely touted as a population health approach to improve health outcomes, health equity, and reduce healthcare spending, and are particularly effective at reducing health disparities [ 1 , 2 , 3 ]. While traditional patient care happens within the walls of physician’s offices, the work of the CHTs bridges the gap between clinical care and daily lifestyles. Yet relatively few states have developed and funded statewide networks of CHTs. Funding CHTs is challenging, and the funding model directly influences the role CHTs play in the healthcare ecosystem [ 4 ]. For example, CHTs funded as integrated members of primary care teams necessarily focus services on covered patient populations; conversely, CHTs funded as independent, community-based teams theoretically focus on broader population health and health equity issues. Despite the potential advantages of community-based CHTs, primary care based teams are more common because of the ease in identifying potential cost savings to justify funding [ 5 ]. Care provided in these kinds of patient-centered, accountable care settings has been found to be associated with lower total expenditures [ 6 ].

One example of a successful statewide community-based CHT model is Vermont, which has sponsored a statewide network of CHTs for almost two decades through the Blueprint for Health initiative (Blueprint). CHTs in Vermont are an integral part of a statewide care transformation model supported by Blueprint, which emphasizes community-led strategies for improving health and well-being. Blueprint ensures that there is at least one CHT in each of the state’s 13 Health Service Areas (HSAs) to provide support services for the population of patients and connect individuals with each region’s available resources. CHTs enable access to individual care coordination, substance use disorder treatment, dietary and nutrition services, and counseling, among other social and economic services [ 7 ]. These CHTs work with both medical and community providers to establish regional health priorities, support learning collaboratives, and work to improve quality of services for health and well-being.

Additionally, Vermont received a waiver in 2018 from the Centers for Medicare and Medicaid Innovation (CMMI) to create the Vermont All-Payer Model (VAPM). The VAPM is unique nationally in that the Medicare, Medicaid and commercial insurance contracts are allowed to pay a prospective actuarially determined “all-inclusive population-based payment” monthly for all anticipated inpatient, hospital outpatient and professional services for the attributed beneficiaries. The VAPM is part of an ambitious effort to fundamentally alter the misalignment of payment incentives across all payers and create an environment where care providers can shift their focus from revenue generation to population health targets [ 8 ]. The VAPM builds on the same CHT structure established by Blueprint, creating a new potential source of funding for CHTs that could be replicated nationally. The VAPM allows the creation of all-payer Accountable Care Organizations (ACO); there is currently one operating in Vermont (“OneCare”), which covers approximately half of the state’s population. How a CHTs program with flexibility and a community focus, interacts with a centralized health system focused initiative is unclear.

Of interest is how CHTs set priorities for different populations and services. To date, little is known about priority setting for community based CHTs, although this is the CHT model that is viewed as optimal for population health. This paper responds to that gap by studying how CHT program managers make decisions about which services to offer and how to allocate their resources, such as staffing composition. This paper provides a window into the factors that influence the decision-making process in a community-based CHT model [ 9 , 10 ]. Understanding which factors influence community health program managers’ team composition, structure, and care coordination services provides lessons for how other states to replicate Vermont’s approach to CHTs.

Data collection activities were part of a Robert Woods Johnson Foundation grant evaluating the effect of combining a global all-payer reimbursement with Community Health Teams responsible for coordinating care and services delivery between the medical, social services, and public health sectors on system alignment, health, access to healthcare and healthy equity. To identify factors which influenced CHT leaders’ decision-making process, we interviewed CHT program managers. Data was thematically analyzed to identify patterns related to the following research question: What factors influence CHT leaders’ decision-making process for resource allocation and service offerings?

The interview protocol for CHT program managers was developed in collaboration with Blueprint leaders and piloted with a community health leader. To aid interviewee recruitment, a member of the Blueprint leadership team told all CHT program managers to expect an email from our research team inviting them to participate in a 1-hour virtual recorded interview. Through quota sampling methods, our sample included all thirteen CHT program managers to sufficiently gather information about factors influencing leaders’ decision-making process [ 11 ]. Program managers were invited to include other CHT team members in the interviews: some program managers did, and some did not. In total, all CHT program managers representing the thirteen HSAs accepted our invitation to participate in a 1-hour semi-structured interview conducted between January 11 and March 03, 2021.

We asked interviewees about their current service offerings, factors that influenced their decision-making process, if their decisions were data-driven, and if so what types of data were consulted (see Table  1 for interview topics and questions). Prior to the interviews, interviewers reviewed recent annual reports and relevant websites to get insights on the thirteen HSAs’ program offerings, enabling them to probe interviewee answers as needed. Our multidisciplinary team consisted of university-based behavioral health researchers and faculty. The three-member research team conducting the interviews consisted of two females with PhDs and one male research specialist. One female researcher is an Assistant Professor of Radiology with expertise in population health science, health services research, and decision analysis. The other female was a research analyst in the Division of General Internal Medicine Research with expertise in qualitative methods. The male researcher was a research specialist in the Department of Radiology and the Department of Surgery, Division of Acute Care Surgery, with expertise in health systems assessment and decision analysis. When possible, two members of the research team participated in the interviews and debriefed afterwards. The researcher with expertise in qualitative methods led the analysis process.

Interview recordings were transcribed and imported into Dedoose, our qualitative research management software [ 12 ]. Our thematic analysis entailed a combination of deductive and inductive approaches [ 13 ]. Using a deductive approach, a code framework was developed informed by the interview topics and initial review of the transcripts [ 13 ]. This a priori code framework was imported into Dedoose to provide a structure to organize analysis. Subsequent analysis of transcripts was guided, but not confined, by the preliminary code framework. Using an inductive approach, emerging codes were added as the researcher carefully analyzed the interview transcripts continuing to refine and reorganize the codebook [ 14 , 15 ].

Through processive cycles of coding, the recurring patterns across congruent codes informed the subthemes [ 13 ], Identified subthemes were closely scrutinized for alignment to ensure they were representative of the data. Analysis began at the individual HSA level to establish the context and characteristics of each region, followed by an analysis across all HSAs [ 16 ]. To assist with cross-region comparisons, a table outlining key characteristics and themes was created. Project team members and partners provided feedback on several iterations of emerging categorizations to collapse and refine themes. The transcripts were not provided to the interviewees out of respect for their limited time.

Four major themes emerged from the interview data as factors influencing CHT program managers’ decision-making process: commitment to offering high-quality care coordination, Blueprint’s stable and flexible structure, use of data in priority setting, and leveraging community partnerships and local resources. The major themes represent what was most prominent in the data in terms of strength and salience in relation to our research question; all are related and overlap with one another. Each of the four themes are presented in Table  2 and discussed below.

Commitment to offering high quality care coordination

The first theme was the CHTs’ focus on individual patient care coordination. Many CHT program managers shared that their care coordinator’s work centers around what is most important to the patient, many times asking the patient about what they hope to address through these services. Interviewees described how this strategy cultivates trusting relationships with patients, and is an essential step to increase patient engagement for behavioral health modifications. A care coordinator describes their approach as “engaging them [the patient] with what they feel is most meaningful to them at the time. What they need in that moment to see the value to working with someone to get support.” (Interview #PM9) Many interviewees shared stories of helping patients address barriers to accessing services, such as transportation or communication with their primary providers and specialists. “We help patients take those next steps of what the provider is asking them to do and support them getting the resources they need to make it happen,” (Interview #PM9) one program manager noted.

Many interviewees shared examples of care coordinators being funded by hospitals, FQHCs, mental health agencies, and community partners or practices, because the patient need exceeded the Blueprint-funded team’s capacity. Having additional care coordinators helps support CHTs’ ability to meet patient care coordination needs. Regardless of funding sources, many teams described meeting regularly to share resources and stay informed about community partners’ offerings to accomplish more as extended teams. A few health service areas were able to secure grant funds for positions, enabling coordination of social services. For example, stationing a care coordinator at the emergency department to rapidly link patients in crisis to social services is responsive to the community’s needs. Another program manager explained “they receive a grant to purchase grocery store gift cards and they have been a really valuable way to engage people by meeting an immediate need.” (Interview #PM9).

To ensure care coordination services are utilizing best practices, local and state Blueprint leaders host trainings and learning collaboratives. One program manager underscored their commitment to investing in their staff by offering “funding to support training to continue to build their skillset.” (Interview #PM9) They invest in building team capacity, and support staff in earning new licenses and skills. This ability and commitment to building capacity within their team influences staffing decisions, impacting resource allocation. HSA staff composition also responds to the changes in community needs and healthcare policies. For example, one CHT program manager has increased the number of social workers on their team due to patients’ need for services.

Blueprint’s stable and flexible structure

The next salient theme is related to the flexibility the State of Vermont’s Blueprint for Health, which allows all 13 HSAs to create their own unique organizational structures, funding arrangements, and services. Teams work with their administrative entities and participating practices to identify the best funding arrangements for their community. This ability to be responsive to local context has resulted in a variety of structures. Some community health staff are hired directly by the administrative entities but work onsite at the primary care practices. Some staff are hired directly by and work at the hospital, receiving referrals for care coordination from primary care practices. Funds may also be “passed through” to practices so they can hire their own care coordination staff. A few CHTs have arrangements with their designated mental health agency to hire and manage staff working in the practices.

Blueprint funding is dedicated to CHT staff salaries, so hospitals and practices do not have to pay CHT staff. This funding results in care coordination services being free to patients, removing financial barriers to access. As a program manager noted, “there is no bill that gets generated for our services, so money does not have to be factor in whether they agree to our services or not.” (Interview #PM4) This financial freedom also allows care teams the flexibility to respond to patients’ needs. A few program managers explained that they will meet a patient where it is convenient for them, such as their home or a grocery store. This also allows care coordination services to reach typically underserved patients. An example of this was shared, “we have a health coach that will go grocery shopping with people to help them pick things that are better for their disease.” (Interview #PM13) Care coordinators frequently tailor their services to meet individual patients’ needs.

Use of data in program priority setting

Another prominent theme shared by CHT program managers was how data about their HSA’s unique context and set of community needs influenced their priority setting. Each HSA conducts Community Health Needs Assessments (CHNA) to gather data identifying priority areas. CHNAs are sometimes supplemented with data from the Behavioral Risk Factor Surveillance System (BRFSS) and Youth Risk Behavior Surveillance System (YRBSS). Community needs inform staffing decisions, such as which type of credentialed staff are in highest demand. A program manager explained, “we knew we were going to need at least a nurse care coordinator and a dietician because of the high rate of obesity and diabetes in our area.” (Interview #PM7) In addition, teams gather referral data to inform program improvement.

Many program managers described a strong desire to make data-driven decisions, but some were challenged by gathering utilization data or not receiving data from Blueprint. Blueprint used to create “data profiles” for each practice which were helpful tools to communicate progress, however the practice profiles are no longer provided due to funding cuts. Now, a few CHTs are creating their own data reporting systems and dashboards to inform their decision-making and communicate progress. One CHT team shared that they created a quality dashboard to present at meetings with community partners reviewing data related to diabetes, hypertension, food insecurity, substance use disorder. Some program managers shared they would like to consult data more consistently when making decisions, but lack the resources and capacity.

Leveraging community partnerships and local resources

The final theme influencing priorities and service offerings was the ways in which CHT members leveraged their community partnerships and local resources. Program managers described the unique makeup of staff credentials in their HSA based on local need and availability of other services. Program managers explained how they consider which services are available in their communities and attempt to fill in gaps for needed services with their staff and offerings. For example, if behavioral health services are scarce in a region, the program manager might prioritize hiring behavioral health providers. One program manager shared that their HSA does not have a homeless shelter, so they prioritize working with the homeless population and offering services for them.

The Blueprint program requires CHTs to have a “community collaborative,” which are work groups accountable for meeting the population health goals. One program manager explained how the process works for their collaboratives, “we identified the priority for the four work groups starting with the data from the CHNA, going into the public arena, identified partners who are willing work and we have 99 partners from different agencies and groups that are integrated into the efforts.” (Interview #PM6) The community collaboratives are comprised of leaders from local organizations who understand the current health status of the community and work together to design actionable goals for improvement. A program manager explains, “the leaders are at the table who have all decided to commit to working together in our region to improve health.” (Interview #PM12) Most program managers shared how the collaboratives are an important networking vehicle for cultivating partnerships and exchanging information and resources. One program manager elaborated that the collaboratives are a place where “people share resources, problem solve on care coordination issues, brainstorm on what will work.” (Interview #PM6).

Community partners donate their time to the CHT’s, working collectively as part of their mission. As a program manager illustrates, “the wonderful thing is that they are funding their work through their own different agencies.” (Interview #PM6) Blueprint funding supports staff salaries, so leveraging community partnerships is how many teams make community programming happen. In many cases, CHTs have been able to multiply their impact through these partnerships. For example, one program manager shared that they noticed in their YRBSS that many students showed low resiliency, so they partnered with the Health Department and their designated agency to create a resiliency campaign. They worked with community partners to create tools and curricula for parents and teachers. The strength of community partnerships varies among the HSAs: some are extremely active with a broad scope focused on addressing community health needs, while others are less engaged with a narrower scope. The strength of these community networks influences resource allocation and priority setting.

Influence of the COVID-19 pandemic

Given the timing of our interviews with CHT members, interviewees shared many ways the COVID-19 pandemic influenced their work. In some HSAs, staff helped with COVID-19 testing and vaccine administration. Others called their patients to check in and make sure they were getting the medications and care they needed. Self-management programs switched to being offered virtually, which has increased access and participation. Nationally, telehealth has increased helping to address barriers to care for some patients [ 17 , 18 ].

Thanks to their strong community networks, CHTs were able to directly support the local pandemic response. One program manager articulated, “we are trying to support the development of capacity to better coordinate care, keep those relationships going and be in place to address things as they arise, so with COVID we easily transitioned to help set up systems to address food insecurity and get health information out.” (Interview #PM10) A few CHT program managers shared their belief that the pandemic is increasing the need for mental health services particularly among youth. An interviewee illustrates, “I am concerned about the far-reaching implications of this, especially on our pediatric population.” (Interview #PM4).

VAPM and CHT priorities

The establishment of the VAPM has influenced the work of CHTs in many ways. Though the VAPM is not directly funding the CHTs, interviewees shared many ways CHTs are relied upon to support the population health goals of the VAPM. The VAPM ultimately must control healthcare spending, so their focus is on medically high-risk patients. In contrast, the CHTs are more focused on the social determinants of health across the entire HSA population. This means the VAPM priority is high-cost patients, while historically CHTs aid any patient who needs to be connected to a community service. The VAPM also focuses on attributed lives (approximately half the state’s population), which means they only fund services to the subset of the population that is attributed to the ACO; in contrast the CHTs provide services based on need rather than eligibility.

VAPM’s payer arrangements also require that a licensed care coordinator serves certain patients to qualify for payments, which has changed some CHTs’ resource allocation. One CHT leader shared, “we are hiring another clinical care coordinator and we need that person to have a license to help manage the ACO attributed population.” (Interview #PM9) The CHTs’ administrative entities are paid by the VAPM based on services rendered rather than receiving fixed funding like Blueprint. One program manager explains,

“Blueprint funding is very clear, we know how much we are getting on a quarterly basis so I can plan my full-time equivalents around that, compared to VAPM funding is value-based so it is not well defined. I think it goes to the hospital’s bottom line and does not translate into care coordination services.” (Interview #PM1)

This creates a new administrative challenge for the CHTs to record and bill for services. Taken together, the VAPM implicitly pushes the CHTs to change their community focus, financial structure, and service offerings.

In this study, we sought to understand the factors that influence CHTs’ decisions about what services to offer and how to allocate their resources. We studied a community based CHT program in the state of Vermont. The CHTs were paid a fixed amount per year and given flexibility in the services offered and the populations prioritized.

The results from our qualitative study revealed the following influential factors: (1) Blueprint’s flexible structure, (2) commitment to offering high-quality care coordination, (3) use of data, and (4) strength of community partnerships. Interviewees’ perceptions and experiences offer insights into their decision-making process for resource allocation and service offerings, serving as a potential model for other states.

The flexibility of Blueprint’s funding and their empowerment of local teams enables them to provide care coordination to all patients. This flexibility allows teams to make decisions about how to allocate their resources directly in response to community needs. Many CHTs believe their collaborations provide economies of scale as well as additional funding for flexible projects. They cultivate and leverage community partners to increase their care coordination capacity. Community partners help to determine community initiatives and programs. Blueprint and CHT program managers invest in building their teams capacities, and work to multiply their impact by increasing coordination and cross-communication. The availability of professional development opportunities and trainings influences how teams are able to allocate their resources to meet dynamic patient needs.

CHTs gathers and consult data about community needs and utilization of services to set priorities for programing and staffing decisions. The Blueprint has an important task in feeding the CHTs relevant data about changing demographics, environmental circumstances, funding mechanisms and other relevant factors to inform their decision making. CHTs also need to report data to their centralized organizations to inform the effect of existing programs. The two-way flow of data is impeded by the lack of a standardized reporting process. Further, CHTs find themselves between two competing structures: one capitated and value-based (Blueprint), and the other capitated, but retaining the limitations and structure of a fee-for-service model (VAPM). This duality creates friction between the priorities of the community, the State, and the funder.

Sustainable funding is a primary challenge for CHTs in the context of the VAPM. The CHTs so far have been flexible in finding alternative funding from a multitude of sources, including community partners, grants, and partners in the healthcare system. But the VAPM represents a unique opportunity for growth and sustained, stable funding – while also presenting new challenges. The additional funding provides the opportunity to expand services yet comes with restrictions and additional administrative burden. In theory, the VAPM structure should create alignment of incentives for population health between the healthcare sector and CHTs, while also providing additional funding for expansion of CHTs. Currently however, the funding is routed through OneCare for their attributed population and supports VAPM’s uniform statewide goals; in contrast to the CHTs non-uniform, community driven goals for the entire population. The differences in focus between the VAPM, OneCare and the CHTs in patient populations and goals may be creating a misalignment between entities who should be partnering to foster a healthy population.

CHTs are a replicable model for leveraging community partnerships to increase service capacity and public engagement in health services for other states. Community based CHTs with flexible funding can work closely with their communities to develop programs that are responsive to community needs. The CHTs gather community needs data, build partnerships and coalitions with community partners and then design programs and hire staff to fit the needs and priorities of their local communities.

Data Availability

Given the identifiable nature of the interview transcripts, data will not be made available publicly. The interview protocol and transcripts created during the current study may be reasonably requested from the corresponding author.

Abbreviations

Community Health Teams

Centers for Medicare and Medicaid Innovation

Vermont All-Payer Model

Accountable Care Organizations

Community Health Needs Assessments

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Acknowledgements

We want to acknowledge Julie Parker (Assistant Director Vermont Blueprint for Health) for her help scheduling interviews and sharing her insights throughout our study.

This research article is part of a project funded by the Robert Wood Johnson Foundation under the Systems for Action program.

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All authors contributed to this manuscript in the following ways: L.N. conducted interviews, analyzed findings, prepared Table 1, and helped write the manuscript; E.vBA. and J.B. conducted interviews and helped write the manuscript; and A.A. led the entire research study and helped write the manuscript. All authors reviewed the manuscript.

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Natkin, L.W., van den Broek-Altenburg, E., Benson, J.S. et al. Community Health Teams: a qualitative study about the factors influencing the decision-making process. BMC Health Serv Res 23 , 466 (2023). https://doi.org/10.1186/s12913-023-09423-6

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Community health worker models in South Africa: a qualitative study on policy implementation of the 2018/19 revised framework

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Joshua P Murphy, Aneesa Moolla, Sharon Kgowedi, Constance Mongwenyana, Sithabile Mngadi, Nkosinathi Ngcobo, Jacqui Miot, Denise Evans, Sophie Pascoe, Community health worker models in South Africa: a qualitative study on policy implementation of the 2018/19 revised framework, Health Policy and Planning , Volume 36, Issue 4, May 2021, Pages 384–396, https://doi.org/10.1093/heapol/czaa172

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South Africa has a long history of community health workers (CHWs). It has been a journey that has required balancing constrained resources and competing priorities. CHWs form a bridge between communities and healthcare service provision within health facilities and act as the cornerstone of South Africa’s Ward-Based Primary Healthcare Outreach Teams. This study aimed to document the CHW policy implementation landscape across six provinces in South Africa and explore the reasons for local adaptation of CHW models and to identify potential barriers and facilitators to implementation of the revised framework to help guide and inform future planning. We conducted a qualitative study among a sample of Department of Health Managers at the National, Provincial and District level, healthcare providers, implementing partners [including non-governmental organizations (NGOs) who worked with CHWs] and CHWs themselves. Data were collected between April 2018 and December 2018. We conducted 65 in-depth interviews (IDIs) with healthcare providers, managers and experts familiar with CHW work and nine focus group discussions (FGDs) with 101 CHWs. We present (i) current models of CHW policy implementation across South Africa, (ii) facilitators, (iii) barriers to CHW programme implementation and (iv) respondents’ recommendations on how the CHW programme can be improved. We chronicled the differences in NGO involvement, the common facilitators of purpose and passion in the CHWs’ work and the multitude of barriers and resource limitations CHWs must work under. We found that models of implementation vary greatly and that adaptability is an important aspect of successful implementation under resource constraints. Our findings largely aligned to existing research but included an evaluation of districts/provinces that had not previously been explored together. CHWs continue to promote health and link their communities to healthcare facilities, in spite of lack of permanent employment, limited resources, such as uniforms, and low wages.

South Africa’s community health worker (CHW) programme has been a vital part of healthcare service delivery in South Africa for decades. The programme has existing variation in models of implementation but is guided by a strong national framework since 2011, recently revised in 2018.

Despite the programme’s long history, there are still many challenges to optimal implementation, including limited resources, incomplete staff complements, inconsistent use of data, safety concerns and few pathways for professional development.

South Africa’s National Health Insurance, among other objects, seeks to ensure Universal Health Coverage and optimal implementation of the CHW programme is an important part of that policy and towards improving the quality of primary health care in South Africa.

South Africa has a long history of community health workers (CHWs) dating back as early as the 1930s ( MacKinnon, 2001 ). It has also been a complex journey, balancing constrained resources and competing priorities ( Clarke et al. , 2008 ). The 2004 National Department of Health’s (NDoH) CHW policy allowed for both generalist (care across the spectrum of health needs) and single-disease CHW functionality, focusing only on HIV. e.g. ( Friedman, 2005 ). An increasing burden of HIV and tuberculosis between the 1990s and early 2000s resulted in the proliferation of CHWs being recruited and trained ( Friedman, 2005 ; Schneider et al. , 2016 ). Guided by the primary healthcare approach in Brazil, South Africa’s NDoH has prioritized re-engineering the primary healthcare (PHC) system since 2011 ( National Department of Health of South Africa, 2011 ). CHWs, supported by other health professionals, form a bridge between communities and healthcare service provision within health facilities and act as the cornerstone of the national Ward-Based Primary Healthcare Outreach Teams (WBPHCOT 1 ) programme ( MacKinnon, 2001 ; SA NDoH, 2018a ). From a policy perspective, the model has now long embraced the generalist approach, described as ‘integrated services’ by the NDoH 2011/12 and 2018/19 policies ( Jinabhai et al. , 2015 ).

There is ample evidence to show that CHWs can help in improving attitudes towards family planning, increased breastfeeding and immunization of children under five years, as well as tracing of patients on ART and other aspects of healthcare provision, particularly among those in rural and underserved areas ( Geng et al. , 2016 ; Naidoo et al. , 2018 ). Under the current Policy Framework and Strategy for WBPHCOT 2018/19–2023/24, CHWs have a broad scope of work that supports various health programmes including: (i) health promotion and illness prevention; (ii) registering health needs at the household level; (iii) providing psychosocial support; (iv) management of minor health issues; (v) coordination with other health providers; (vi) providing adherence support and counselling for chronic conditions; and (vii) tracing of patients who have missed HIV and TB service visits or who need referring back to the clinic ( SA NDoH, 2018b ). Swartz (2013) and Jinabhai et al. (2015) , acknowledge the substantial variability within small pockets of the country and across provinces in CHW service delivery ( Swartz, 2013 ; Jinabhai et al. , 2015 ). To date, ∼70 000 lay health workers (a broader category which CHWs fall within) have been recruited and deployed across communities in South Africa and have helped to address the vast shortfall in human resources for health in South Africa ( Schneider et al. , 2018 ). However, there are still only half the WBPHCOTs needed to cover all 4277 wards across the country ( Schneider et al. , 2018 ).

Because of the various models of implementation that exist across South Africa, the limited documentation of implementation countrywide and the persistent barriers that CHWs face, detailing CHW policy implementation across the different provinces is of critical importance. This is important as it may inform the NDoH about what is working and what is not working within the policy and help inform future revisions and implementation. A rapid appraisal was conducted by Jinabhai et al. (2015) to assess WBPHCOTs; however, their report only focused on the National Health Insurance (NHI) pilot districts ( Jinabhai et al. , 2015 ). This study aimed to document the CHW policy implementation landscape across six provinces in South Africa, to identify potential barriers and facilitators of the current policy to help guide and inform future planning.

Study design and population

We conducted 65 in-depth interviews (IDIs) with a purposively selected sample of Department of Health (DoH) National, Provincial and District level managers, healthcare providers and implementing partners 2 (who worked with CHWs) from a single district in Gauteng, KwaZulu-Natal, Limpopo, Mpumalanga, North West and Western Cape provinces. Eligible districts were those not included in Jinabhai et al. ’s (2015) work and otherwise a convenient sample to collect a variety of urban, peri-urban and rural districts based on existing relationships and familiarity with the study sites/communities. We also conducted nine focus group discussions (FGDs) with CHWs themselves. Figure 1 is a map of where the research took place.

Map of South Africa and six districts/provinces included in the study

IDIs with experts—sample selection

We followed a top-down non-random convenience sampling approach to data collection starting with IDIs with national and provincial experts. These participants then suggested managers and providers at the district level (including implementing partners) who could be approached to participate and they in turn suggested participants at facility level [e.g. including facility managers, data capturers, outreach team leaders (OTLs) and/or CHWs] who would have valuable perspectives to offer (Bhattacherjee, 2012). Table 1 outlines the expected and actual number of respondents at each level and also includes illustrative titles, description of roles and level or areas of oversight. Respondents were eligible to be interviewed if they were employed in a relevant position, had prior experience and/or policy awareness with CHWs, were 18 years of age and older, agreed to participate and provided written informed consent.

Description of interview respondent: types, targets/reached, geographic coverage and description of roles

CHW, COmmunity Health Worker, CCG, Community Care Giver; CCW, Community Care Worker; GP, Gauteng; HAST, HIV/AIDS, STIs and Tuberculosis, KZN, KwaZulu-Natal; NGO, Non-governmental Organisation; OTL, Outreach Team Leader; PHC, Primary Healthcare; NW, North West; WBOT, ward-based outreach team; WBPCHOT, Ward-Based Primary Healthcare Outreach Team; WC, Western Cape.

Largely these roles are being phased out in favour of CHW across the country.

FGD with CHWs—sample selection

Focus group participants were also identified through a process of non-random convenience sampling. District and facility respondents included in the IDIs helped us to identify eligible CHWs and invite them to the FGDs. As planned, we conducted two FGDs per district, one at a high-performing facility and one at a low-performing facility (determined based on district managers subjective experience). Targets and reach of CHW FGDs are in Table 2 . All our FGDs comprised CHWs belonging to at least two different facilities or two different WBPHCOTs. CHWs identifying as home-based caregivers (HBCGs), peer educators, community caregivers (CCGs) in KwaZulu-Natal and community-care workers (CCW) in the Western Cape ( Friedman, 2005 ; Stellenberg et al. , 2015 ) were considered eligible to participate in the FGDs if they were 18 years of age and older, agreed to participate and provided written informed consent.

Description of focus group respondents: targets/reached and languages present

Data collection and instrumentation

Data were collected between April 2018 and December 2018. IDIs were conducted using separate interview guides for (i) provincial and national expert IDIs and (ii) district, facility and CHW IDIs. A further guide was developed to facilitate the FGDs. The guides were developed with input from experts: those in our organization as well as experts from the University of Pretoria and University of the Western Cape. The topics of each guide are summarized in a web annex ( Supplementary Data S1). IDIs were carried out in English, but FGDs were conducted in the local language chosen by the CHWs. All interviews and FGDs were recorded for quality, transcription and translation purposes. The interviewers and note-takers also recorded their interview/FGD notes and reflections for each data collection event. Participants provided written informed consent to confirm that they had been informed about the study and were willing to be recorded. The IDIs lasted 30–60 min and the FGDs between 60 and 120 min. Interviews with national, provincial and select district respondents were conducted over the phone while FGDs and facility interviews were conducted in an office or boardroom at the healthcare facility.

Data management and analysis

All FGDs and all but one IDI were audio-recorded and transcribed, and the single IDI was included in the analysis as ‘expanded notes’ because the respondent declined to be recorded ( Tolley et al. , 2016 ). Interviews were transcribed verbatim while FGDs were simultaneously translated during the transcription process into expanded notes, i.e. not always verbatim, but included direct quotes as judged by the FGD facilitator ( Oliver et al. , 2005 ; Tolley et al. , 2016 ). Transcripts were then imported into NVivo 11© (Doncaster, Australia), coded line by line and analysed using a content analysis approach ( Richards, 2014 ).

We considered theoretical frameworks ( Damschroder et al. , 2009 ; Naimoli et al. , 2014 ) as well as results from other South African reports and sections from the policy document to guide the creation of our codebook and analysis ( Jinabhai et al. , 2015 ; SA NDoH, 2018a ). The deductive portion was guided by the most recent comprehensive reviews of WBPHCOTs ( Jinabhai et al. , 2015 ) and the policy itself ( SA NDoH, 2018b ), which led to the creation of codes (e.g. policy, services, implementation, training and management; codebook: Supplementary Data S2). Additional codes were added as themes emerged (as per the inductive process). To minimize researcher bias, we coded the first transcript as a group of five, thereafter two researchers coded least two additional transcripts each and inter-coder agreement was assessed using a Kappa coefficient. Coding was refined until agreement among coders reached good correlation (>0.5).

We present sample characteristics of IDI and FGD respondents and then our results within four primary areas: (i) current models of CHW policy implementation across South Africa; (ii) facilitators to CHW programme implementation; (iii) barriers to CHW programme implementation; and (iv) recommendations. Again, we split the facilitators and barriers into those that influenced policy implementation and those that directly influenced CHWs.

Sample characteristics

We conducted IDIs with 65 stakeholders ( Table 1 ). Of those interviewed, 82% were female. The median years in the position was 4.5 (range: 0.3–27.5) and the median years with their organization was 9.2 (range: 0.3–31.5). The FGD respondents (101 from 9 FGDs) were predominantly female (95%), they had worked a median of 4.7 years (range: 0.7–15.7) as a CHW, their median age was 43 years (range: 24–60 years) and 52% had completed secondary school (grade 12) ( Table 3 ). Similarities and differences in CHW characteristics were observed across different provinces ( Tables 2 and 3 ). Full FGD sample size was not reached in two provinces where only one FGD was conducted; data saturation that occurred within provinces suggests that the impact of only one FGD in those cases on a full data picture was minor.

FGD demographics

Current models of CHW policy implementation and characteristics of CHWs across South Africa

Most national, provincial and district level respondents were aware of the new framework and the details. Most participants discussed the transition from HBCGs, where CHWs were employed by local non-governmental or community-based organizations (NGOs or CBOs), to the DoH. Community-oriented Primary Care (COPC) was described as one approach to implementing the WBPHCOT programme. This approach involves supporting communities holistically and differs from the PHC Re-engineering approach, which focuses more on facility-based outcomes. One district manager described COPC saying that WBPHCOT is the name of the programme and COPC is the methodology you use to implement WBPHCOT. COPC was mentioned as a more resource intensive model of implementation occurring in Gauteng, KwaZulu-Natal and the Western Cape. While some respondents pointed out differences between COPC and PHC Re-engineering, others described them as the same ( Table 4 : Quotes A and B).

Key quotes from all respondent types concerning the key thematic areas

We observed both similarities and differences in implementation across the different provinces. The key elements, including information on NGO involvement, contractual and leadership structures, CHW working structure and working hours, are summarized in Figure 2 and Table 5 .

Structural differences in employment of CHWs and OTLs across six districts

Description of key elements of WBPHCOT policy implementation by district

As reported in our interviews.

Community-based Programmes as a directorate is being phased out.

CBO, community-based organisation; CCG, community care giver; DSD, DoH, Department of Health; Department of Social Development; ENs, enrolled nurses; EPWP, expanded public works programme; HAST, HIV/AIDS, STIs and TB; HH, household; NGO, non-governmental organisation, NPOs, non-profit organizations; PERSAL, Personnel and Salaries management system; PNs, professional nurses; WBOT, Ward-based Outreach Team, WBPCHOT, Ward-Based Primary Healthcare Outreach Team.

For many CHWs that conduct household visits, checking in and out of the facility is standard practice. In Mpumalanga, e.g. CHWs begin their day from 7:00 am to 8:00 am supporting the health talks given by facility staff in the waiting areas before continuing with their required CHW duties. Conversely, some CHWs in North West and Limpopo start in the facility but finish their shift in their communities, while some CHWs in KwaZulu-Natal may only visit their facility once per week. The tools used were consistent across districts with frequent descriptions of (i) household registration form, (ii) individual form for anyone with chronic illness, (iii) maternal and child record, (iv) referral/back referral form, (v) household visit tick sheet, (vi) individual CHW monthly summary and (vii) team monthly summary form. The household visit tick form was sometimes used to plan the week ahead and served as a checklist for the number of household follow-up visits per week. Most teams conducted community work from Mondays to Thursdays with Fridays dedicated to in-service training or compiling and submitting reports. The in-service training was most consistently mentioned in Gauteng and North West province. The teams in KwaZulu-Natal and Western Cape did not mention participating in trainings on Fridays. The number of household visits ranged from two household visits per CHW per day in Gauteng to 10 per CHW per day in Limpopo. Large variations in hours of operation and levels of management were observed across different provinces.

Facilitators to CHW programme implementation

Overall participants in the IDIs and FGDs identified fewer facilitators to WBPHCOT implementation than barriers, but nevertheless facilitators were present.

Facilitators to policy implementation

Consistent health priorities.

Strong consistent messages on health priorities were seen as a key facilitator for CHWs (e.g. in the Western Cape the focus on the ‘first one thousand days’ of children’s lives). Across models of implementation, districts and respondents, the health priorities that CHWs focused on were consistent. According to our respondents, TB, health issues of children under-5-year old, maternal health and HIV/AIDS remain their main health priorities. Social services and support of non-communicable diseases, such as hypertension and diabetes, also form part of the priorities of the WBPHCOT programme. Many CHWs felt that they understood the services they administer and their daily routines; there was an overall sense of clarity in their roles and responsibilities (Quote C).

OTLs are a key facilitator to the implementation of WBPHCOT. Supervision and guidance from OTLs were common and viewed as being hands-on and supportive. Telephone advice and general support was also noted as being a key part of OTL management strategies (Quote D).

Tracing resources and adaptation

Across facilities we noted individualized solutions to facilitate planning and improve tracing of patients who missed a visit for HIV or TB services. When we did encounter office space (it was infrequent), there was evidence that OTLs and CHWs have created hand-drawn maps of the areas where CHWs and WBPHCOT have been assigned. These maps facilitated overall planning.

In KwaZulu-Natal, we observed some novel solutions to the defaulter tracing process: (i) each patient was assigned to a CHW at registration at the facility to establish relationship with the patient to assist with tracing in the future if needed and (ii) each CHW is assigned a pigeon box, or designated area in the facility, where details of patients assigned to the CHW for tracing can be conveniently found.

Facilitators that influence CHWs’ work in the community

Purpose and passion.

A sense of purpose, passion for the work, trust from the community and a feeling that as CHWs, they were making a difference were common facilitators reported across respondents (Quote E).

Close proximity to the community

CHWs reported their deep knowledge of their client’s culture (most were from the communities they serve) as a key facilitator in being able to implement their work. CHWs reported that this enhances CHW–client communication and cooperation, helps build awareness of the services that CHWs offer and also fosters trust among the communities that CHWs are serving (Quotes F and G). Similarly, some provincial representatives indicated that when CHWs engaged with the community, then their tracing was more effective (Quote H).

Participants also mentioned ‘Health Posts’. A ‘Health Post’ is usually a physical office outside of the facility but within the community. Although evidence about these was limited, the respondents indicated that proximity to the community was an advantage in delivering CHW services and provided an opportunity to deliver outreach work more effectively.

Facility integration and recognition

A strong and supportive relationship with facility management, through knowledge and integration of community-based care and facility-based clinical services, was reported as an indication to success in CHWs’ work (Quote I).

Barriers to CHW programme implementation

Critical barriers emerged frequently across all participant responses. Below we report challenges around: awareness of the new policy, deficits on staff complement and coverage, concerns around OTL and integration with the facility, inadequate wage, resources, data collection/use and tracing challenges.

Barriers to policy implementation

Clarity on elements of the policy framework.

Largely, respondents seemed to have a clear understanding of the points included in the framework and what should be implemented; however, this was less apparent at the facility and community level. Some respondents did raise issues of clarity in the framework, e.g. in relation to the required qualifications of CHWs (Quote J).

Limitations of staff complement

One of the more common challenges mentioned was allocation of a full staff complement in terms of coverage of all wards and ensuring that there are sufficient CHWs to cover each ward (Quote K). There was little evidence to show that CHWs were allocated appropriately with consideration of the size of the catchment area. As an example, in rural Mpumalanga, one OTL described that she had a catchment area of >10 000 individuals that was served by five CHWs (the policy states each WBPHCOT of between 6 and 10 CHWs should serve ∼6000 individuals). We did encounter reports that resources are directed towards those areas of greatest need, guided by socio-economic status and other social determinants of health.

Limited OTLs

While a key facilitator to implementation of WBPHCOT are OTLs themselves, we found that OTL availability, regardless of qualification (professional nurse or enrolled nurse 3 ), was a problem countrywide, but most acute in Limpopo where OTLs were most limited and were often facility-based professional nurses who served as OTLs as secondary roles (Quote L).

The limitations of OTLs were a major concern across respondents. The preference for the qualification of the OTL varied across provinces. Some believed it could be either an enrolled or professional nurse whereas others felt it could only be a professional nurse (Quote M). Quote M from a district manager in Mpumalanga describes a difficult ‘Catch-22’ situation where there is a shortage of profession nurse and her belief that enrolled nurses are not adequately suited for the role. It was only Gauteng that had a presence of enrolled nurses serving as OTLs and did not mention a shortage of this cadre of staff.

Wage, professional development and limited resources

There was consistent disappointment with the low wage, lack of permanent employment and limited opportunities for professional development. We also asked the CHWs and OTLs if they are provided with required and necessary equipment and supplies, such as sphygmomanometers, educational tools, first-aid kits (dressings, paracetamol, etc.), masks, uniforms, name tags and stationary. None of the CHWs or OTLs interviewed reported that they had all the equipment they needed. Stationery was often in short supply with CHWs often having to use their own money to make copies of necessary forms or buy their own stationery (Quote N). Essential equipment like TB masks was in many cases not provided, putting the CHWs at the risk of infection while interacting with their TB patients.

The most common missing resource was uniforms (Quote P), which participants indicated were key to their work, especially in terms of being trusted and taken seriously (Quote Q).

Barriers that influence CHWs’ work in the facility

Limited respect.

Many CHWs do not always feel respected and integrated into the facility (Quote R) and their job specifications are misunderstood by other staff members. At worst there is mistrust between facility staff and the CHWs with lower lay cadre staff members feeling as though CHWs are being used to replace them.

Conflicting roles and remuneration

The presence of an NGO was sometimes a barrier to CHWs working with facility staff as this created confusion about work roles, while at other times a lack of communication between CHWs and the facility was a symptom of a system transitioning from NGO supervised to DoH/facility supervised. Community-based organization or NGOs who have historically managed and employed CHWs have since been dissolved in many areas to know managed by the DoH, except in the cases of Limpopo and the Western Cape (Quote S).

During our data collection there were announcements from South African government of a move to implement a minimum wage package for CHWs, and while in some districts this has now been initiated, there still remain many districts where this has not been implemented.

High burden of data collection and reporting

Data collection was described by participants as being time-consuming and information use was challenging due to resource limitations. Completing paperwork and the daily, weekly and monthly reporting that was frequently required was often described as burdensome and onerous and was on occasions even resented by patients. We collected reports that some patients would refuse to sign the forms because they were asked on every visit and did not see the benefit. The process of household registration was also reported to be time-consuming because forms are often not captured electronically or already collected information will often be missing and the process then has to be repeated (Quote T).

Challenges with tracing and record-keeping

An issue closely related to data management is tracing. This was highlighted by patient lists that are given to CHWs to trace those who are defaulting on chronic treatment or who need follow-ups for TB, pregnancy, immunizations, etc. The size of these lists per facility could vary greatly from just five up 500–800 individuals over a given month, while individual CHW house-visit lists could be as small as 2 and as large as 20 in the course of a week. Reported time to trace and follow up all of those on the list could be 2–3 h of walking in a day and between 2 and 3 weeks to trace everybody.

Success of tracing varied widely, from not finding any on the list to being able to successfully trace 9 out of 10 patients. The primary reason for low success was wrong addresses and phone numbers (S4: Quote U). This was also compounded by the fact that lists were often photocopied or hand-written making them difficult to read. The exceptions were in the Western Cape where tracing lists were emailed and even sent via WhatsApp. Client names also often reappear on these lists, even though there was a history of previous unsuccessful tracing attempts, or the patient had been confirmed as deceased and this would had been previously documented. Where CHWs self-selected the names of the patients that they were visiting from the lists, it was found that this also could result in duplication of effort, by the same CHW. More concerning though was the issue raised in one district where it seemed that CHWs did not even have a list of those who should be visited (Quote V) and just haphazardly visited households. The concept of ‘silent transfers’ where patients on antiretroviral therapy switch facilities without informing their originating facility nor their receiving facility was also frequently described and presented another challenge to tracing.

Concerns over safety and security

Safety and security remain a major concern among CHWs while they are out on the field tracing. As shown in Table 5 , CHWs from Gauteng always went out in pairs because of safety concerns while the practice varied between working alone or in pairs in other districts. It was a concern everywhere, but most prominently noted in Gauteng and Western Cape.

Recommendations for improving implementation of WBPHCOT policy

Respondents offered a number of helpful suggestions on improving the current CHW programme implementation. The importance of permanent employment, a living wage and uniforms was discussed at almost all of the FGD sessions. These were indicated to be critical factors ensuring the livelihoods and well-being of CHWs.

Across all provinces, respondents noted that, even though training was received, more training was still needed (such as counselling generally, testing blood pressure and supporting diabetes). The issue of no certification for their trainings was also a recommendation for future trainings. A desire for being up-skilled through more training and further qualifications was also commonly highlighted as a recommendation (Quote X).

During data collection, we encountered reports of mobile health pilot interventions being implemented to ease the burden of data collection and programme management of the CHW programme in Gauteng, Mpumalanga and North West. Largely, this was well received and most respondents supported the introduction of mobile technology. However, this needed careful consideration and implementation as early indications in provinces where these systems have been piloted or used showed that the systems did not always provide helpful reporting nor did they have adequate management support. Although most supported it, others recommended against use of mobile tools for fear the devices may be stolen.

Other noteworthy considerations included emphasizing the importance of better integrating CHWs into the current PHC system (S4: Quote Y). Also, the potential use of community indicators (such as knowing one’s own HIV status) to assess CHW impact (S4: Quote Z) on progress towards UNAIDS 90-90-90 HIV targets. 4

We gathered a wide range of perspectives on models of the implementation of CHW policy in South Africa. We identified two major categories of CHW policy implementation support: (i) implementation supported by NGOs as seen in the provinces of Limpopo, Mpumalanga and the Western Cape and (ii) implementation managed by the DoH implemented as in the provinces of Gauteng, KwaZulu-Natal and the North West. Western Cape and KwaZulu-Natal also have additional levels of non-clinical leadership (experienced CHWs promoted to support administrative and supervisory duties), to manage CHW activities. Hours of operation vary substantially and a few districts require ‘clock-in’ processes where CHWs are required to report to facilities. Other districts have ‘Health Posts’ or arrangements where CHWs can start their workdays directly from their communities, not always requiring a daily facility visit. ‘Health Posts’ described elsewhere consist of 3–6 rooms in temporary structures, often without water or electricity, and providing medication and minor treatments ( Nxumalo, 2014 ; Tseng et al. , 2019 ).

Key facilitators to implementation of the CHW policy included having effective OTLs in place, as well as individualized solutions to facility planning to improve CHW integration and tracing success. This included ensuring patients are allocated to specific CHWs prior to a missed visit to ensure effective tracing. CHWs’ ties and relationship with their community, their sense that they were making a difference and the trust of the communities were all seen as factors that facilitated successful implementation.

There were a number of barriers highlighted which threatened the success of these programmes, which were often centred on limitations. Insufficient numbers of CHWs, OTLs, equipment and supplies were frequently reported as a major challenge, as well as reports of a lack of respect and recognition from some in the community and from facility staff. Issues of a low wage, absence of a uniform, burdensome paper work, permanent employment and a lack of opportunity for professional growth were consistently highlighted by all CHWs with whom we engaged.

These findings largely align with the existing body of knowledge on the topic of CHW programme policy implementation: that leadership is in great demand ( Schneider and Nxumalo, 2017b ); that the policy is largely understood and followed, but that resources are constrained ( Jinabhai et al. , 2015 ). Also, aspects of implementation remain complex and challenged by limited availability of resources such as uniforms, equipment and stationery ( Schneider et al. , 2018 ; Clarke et al. , 2008 ). As Jinabhai et al. (2015) had found, and also clear from this research, that WBPHCOTs are allocated to the areas of greatest need, based on social determinants of health (e.g. poverty, unemployment, violence and addiction) ( Jinabhai et al. , 2015 ). We also observed shortcomings of the existing paper-based data system as noted by Jinabhai et al. (2015) and observed a clear absence in the available use of available data for planning and implementation at all levels across the health system.

From our observations we believe that the implementation of the CHW policy must be adaptable and appropriate for the context in which it is implemented to achieve the objectives of PHC Re-engineering and support the implementation and rollout of universal health coverage 5 in South Africa. ( Stevenson, 2019 ). This assertion deviates slightly from the conclusions of Jinabhai et al. (2015) who call for one national centralized authority ( Jinabhai et al. , 2015 ), but perhaps reflects programme maturity and the need for provincial autonomy noted by Schneider et al. as implementation continues ( Schneider and Nxumalo, 2017b ).

Our findings support that supervision and leadership of CHWs is critical to the effective implementation of ward-based PHC outreach teams. A report led by Genesis (2019) recently provided a comprehensive evaluation that found similar findings to ours: an insufficient CHWs and insufficient OTLs ( Genesis, 2019 ). Jinabhai et al. (2015) suggested that ‘Team leaders could be drawn from nursing and CHW cadres with sufficient qualifications, without appointing professional nurses who are in short supply and are the back bone of clinical care at facilities’—a strategy that we saw had been piloted and seems to have been successful in KwaZulu-Natal and the Western Cape. Conversely, Tseng et al. (2019) also explore the issue of supervision and emphasize the importance of the Professional Nurse cadre over a less senior, Enrolled Nurse ( Rispel, 2015 ; Tseng et al. , 2019 ).

A major challenge to the implementation of CHW policy was between full coverage and supporting those at most need. One of the major policy priorities is to ‘improve access to healthcare for poor and vulnerable communities in priority settings like the rural areas’ ( SA NDoH, 2018a ). The need for full coverage of CHWs across South Africa while ensuring the quality of that coverage and suitability of different implementation models in urban and rural settings presents a significant challenge. Focusing on optimal implementation in the subset of wards that are most in need, or potentially restricting the programme to rural rather than urban areas, might be considered as an interim solution while further resources are identified for complete quality coverage ( Naidoo et al. , 2018 ). Wahl et al. (2019) , conversely, suggest that urban settings should not be excluded from CHWs’ services ( Wahl et al. , 2019 ).

A mobile health (mHealth) solution seems long overdue, considering the data gaps ( Genesis, 2019 ), and the relative willingness of our respondents as well as the potential to address tracing challenges. A national policy document ( Chowles, 2015 ) calls for a holistic approach to mHealth to ensure government leadership and stakeholder involvement and there are many existing projects from which to draw ( Strydom, 2017 ; Venter et al. , 2019 ).

A difficult but important issue to mention is safety. We collected the evidence of physical violence targeted towards some CHWs. This can be as severe as sexual violence, which has been reported in the popular South African media in the course of 2019 ( Selepe, 2019 ). The overwhelming majority of CHWs in our sample (and in South Africa) are women—which might explain why CHWs’ safety while performing their duties was frequently raised as a challenge; the paucity of safety control measures for CHWs, besides travelling in groups, remains a concern. We collected no other safety procedures besides working in groups. In a different vein of safety, CHWs are currently being asked to serve as some of the primary screenings for the emerging COVID-19 global pandemic ( van Dyk, 2020 ). With the consideration of their limited resources, including masks, this is an issue that requires urgent attention.

There are a number of strengths to the research presented here, namely: (i) presentation of findings from districts other than the National Health Insurance pilot districts ( Jinabhai et al. , 2015 ); (ii) the inclusion of both rural and urban districts as opposed to many CHW studies ( van Rensburg et al. , 2008 ; Schneider and Nxumalo, 2017a ; Naidoo et al. , 2018 ); and (iii) inclusion of a wide range of stakeholders from the national leadership to CHWs themselves.

Our major limitations were the routine forms of bias in qualitative research, namely qualitative research cannot be wholly generalizable to the country or even our selected provinces. We also recognize social desirability bias from respondents, selection bias in terms of our non-random selection and researcher bias (in the form of confirmation bias and also contamination from knowledge of the existing CHW research). Respondent bias was mitigated through an open-ended and non-leading interview guide and training prior to data collection. Our selection bias was balanced against our strength of having a large sample allowing viewpoints from across South Africa. We were unable to reach full FGD sample size because of time constraints and difficulty scheduling with a CHWs. Potential research bias was balanced through assessment of inter-coder reliability and review of interpretations during the write-up process. With our large sample size, we achieved saturation on most of our reported areas, but in other areas, such as reports of staff complement across wards, we did not achieve full saturation. We did not explore quality controls measures in depth and we were also unable to align the characteristics we collected to an objective measure of programme success, thereby highlighting opportunities for future work in this arena.

This research is unique in that it presents a detailed landscape of CHW policy implementation across several South African provinces. The passion, commitment and a feeling among CHWs that they can make a difference within the communities they serve is a key driver in ensuring the success of this programme. Although the CHW policy is widely recognized and understood, there are a number of challenges to implementation that still exist. The degree of collaboration between facility-based staff can be a facilitator or a barrier to implementation; this relationship can also be moderated by the presence of an involved OTL. We believe that it will be important to ensure that CHWs are given the visibility and recognition they seek through permanent employment, uniform, and a higher wage; also, that vacant OTL roles are filled as a priority with appropriate staff cadres. Mobile health solutions remain a priority to help CHWs effectively plan their work and to ensure that efforts are not wasted trying to support patients who are known to no longer be within the communities that CHWs support.

There are opportunities for learning across the existing models of CHW in South Africa. Implementation of other policies or strategies that might overlap or contradict the priorities of this policy needs to be introduced with care. Further research that builds on the information collected here and explores the preferences of CHWs and their managers for different attributes of CHW implementation (e.g. including leadership cadre, performance based-motivations, scope of work) using a discrete choice experiment or similar stated preferences design is warranted to further determine the focus to strengthen the implementation of this policy.

Supplementary data are available at Health Policy and Planning online.

Generally, we refer to WBPHCOT Policy Implementation as ‘CHW Policy Implementation’.

In this context, an implementing partner is a PEPFAR-funded organization who at the time of the study was mandated to provide technical support (such as training and mentoring) to support the implementation of CHW activities.

Rispel (2015) clarifies that a professional nurse requires 4 years of training and can specialize in midwifery, while an enrolled nurse requires only 2 years. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4430691/ .

UNAIDS (2015) 90-90-90: treatment for all https://www.unaids.org/en/resources/909090 .

Referred to as National Health Insurance in South Africa.

Currently CHWs work under community-based services.

We thank all the CHWs, healthcare providers, data staff and other experts involved with the research directly or indirectly; community-based organizations and development partners; South African Department of Health at the National, Provincial and District levels; and the Research Team—Lezanie Coetzee, Kelebogile Kgokong and Daniel Letswalo. We also thank Noluthando Ndlovu from Health Systems Trust for help with mapping. We dedicate this work to Professor David Sanders who passed away on 31 August 2019, a champion of PHC and advocate for health as a human right as well as all healthcare workers facing the COVID-19 response in 2020.

Authors’ contributions

J.P.M., S.P. and D.E. conceptualized the study. J.P.M. oversaw data analysis, prepared the draft manuscript and managed subsequent revisions. J.P.M., S.P. and D.E. oversaw implementation of the study and all data collection. S.K., N.N., C.M., S.M. and A.M. analysed the IDIs and FGDs and contributed to writing the manuscript. J.M. provided substantive feedback on several iterations of the article.

This work has been made possible by the generous support of the American People and the President’s Emergency Plan for AIDS Relief (PEPFAR) through USAID under the terms of Cooperative Agreements AID-674-A-12-00029 and 72067419CA00004 to HE 2 RO. The contents are the responsibility of the authors and do not necessarily reflect the views of PEPFAR, USAID or the United States Government.

Conflict of interest statement. The authors declare no conflicts of interest.

Ethical approval. Ethical approval for the study was granted from the Human Research Ethics (Medical) Committee of the authors’ institute. Data collectors were trained in qualitative interviewing techniques, good clinical practice, research ethics and study procedures. Respondents were not compensated for their time; however, CHWs participating in FGDs were reimbursed for any travel costs and provided with lunch.

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• community health workers
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How should community health workers in fragile contexts be supported: qualitative evidence from Sierra Leone, Liberia and Democratic Republic of Congo

• Joanna Raven   ORCID: orcid.org/0000-0002-4112-6959 1 ,
• Haja Wurie 2 ,
• Ayesha Idriss 2 ,
• Abdulai Jawo Bah 2 ,
• Amuda Baba 3 ,
• Gartee Nallo 4 ,
• Karsor K. Kollie 5 ,
• Laura Dean 1 ,
• Rosie Steege 1 ,
• Tim Martineau 1 &
• Sally Theobald 1  

Human Resources for Health volume  18 , Article number:  58 ( 2020 ) Cite this article

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Community health workers (CHWs) are critical players in fragile settings, where staff shortages are particularly acute, health indicators are poor and progress towards Universal Health Coverage is slow. Like other health workers, CHWs need support to contribute effectively to health programmes and promote health equity. Yet the evidence base of what kind of support works best is weak. We present evidence from three fragile settings—Sierra Leone, Liberia and Democratic Republic of Congo on managing CHWs, and synthesise recommendations for best approaches to support this critical cadre.

We used a qualitative study design to explore how CHWs are managed, the challenges they face and potential solutions. We conducted interviews with decision makers and managers ( n = 37), life history interviews with CHWs ( n = 15) and reviewed policy documents.

Fragility disrupts education of community members so that they may not have the literacy levels required for the CHW role. This has implications for the selection, role, training and performance of CHWs. Policy preferences about selection need discussion at the community level, so that they reflect community realities. CHWs’ scope of work is varied and may change over time, requiring ongoing training. The modular, local and mix of practical and classroom training approach worked well, helping to address gender and literacy challenges and developing a supportive cohort of CHWs. A package of supervision, community support, regular provision of supplies, performance rewards and regular remuneration is vital to retention and performance of CHWs. But there are challenges with supervision, scarcity of supplies, inadequate community recognition and unfulfilled promises about allowances. Clear communication about incentives with facility staff and communities is required as is their timely delivery.

Conclusions

This is the first study that has explored the management of CHWs in fragile settings. CHWs’ interface role between communities and health systems is critical because of their embedded positionality and the trusting relationships they (often) have. Their challenges are aligned to those generally faced by CHWs but chronic fragility exacerbates them and requires innovative problem solving to ensure that countries and communities are not left behind in reforming the way that CHWs are supported.

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Introduction

Progress on Universal Health Coverage (UHC) will not be equitable or effective without specific action in Fragile and conflict-affected settings (FCAS). While definitions and figures vary, some 2 billion people are estimated to live in FCAS [ 1 ]. The share of extreme poor living in FCAS is expected to rise from 17% of the global total today to over 66% by 2030 as a result of shocks such as epidemics, earthquakes and climate change [ 1 ]. In FCAS, access to equitable and quality health services is essential for rebuilding the social and economic fabric of countries [ 2 ]. However, health indicators are especially challenging in FCAS compared with the regional and global averages (Table 1 ). For example, over 60% of the world’s child and maternal deaths occur in these settings [ 5 ].

The health workforce is a key component of the health system that underpins the expansion of health services and UHC efforts. Most countries in the global South have a shortage of formal health workers and are increasingly looking to a range of community health workers (CHWs) to fill the gap and in particular reach the poorest and most marginalised communities. CHWs are arguably critical players in fragile settings, where human resource shortages are particularly acute as health workers may have been killed or fled during conflict or died during disease outbreaks such as Ebola.

Our three countries provide a unique opportunity to examine management of CHWs in fragile settings. In Sierra Leone and Liberia, the health systems were severely damaged by conflict and further weakened by the recent Ebola outbreak. Health systems’ responses during and post conflict emphasised the importance of CHWs’ understanding of their communities in the management of the outbreak as well as in re-establishing trust with the health system [ 6 , 7 , 8 ]. In both countries, the Ebola epidemic has triggered an increased interest and investment in community health programmes, with new policies recently rolled out [ 9 , 10 ]. In Sierra Leone, a revised national Community Health Worker Policy was launched in February 2017 and rolled out nationwide with 15 000 CHWs trained to provide a basic package of services at the community level including reproductive, maternal, newborn and child health; integrated community case management of sick children; and infection prevention and control. In 2016, the Ministry of Health in Liberia launched its Revised National Community Health Services Policy 2016-2021. It focuses on the development of Community Health Assistants (CHAs—a type of CHW) trained to deliver a package of preventive, curative, promotive, rehabilitative and palliative services as well as surveillance. CHAs are supervised by Community Health Services Supervisors (CHSS)—a new cadre of health worker who have been formally trained, e.g. as a nurse. Previous cadres of community health volunteers (CHVs), for example, traditional midwives and community drug distributors, remain in operation and are supervised by CHAs.

Constant conflict, poor governance and infrastructure and an unfavourable business environment have left the DRC one of the poorest countries in the world, with the average Congolese resident living on less than $US 0.75 per day [ 11 , 12 ]. The recent Ebola outbreak which has continued since 2018 has further weakened an already struggling health system [ 13 ]. DRC suffers from a severe shortage of health care personnel, with only 1.05 doctors, nurses and midwives per 1000 population [ 14 ]. Relais Communautaires or CHWs play an important role in providing health services to communities in insecure areas, and they are often the only health workers who stay. Supporting CHWs to continue providing services is an important issue. There is no overarching CHW programme in DRC, but CHWs are organised into three categories: site CHWs (providing a minimum package of community activities, such as distribution of ivermectin and contraceptives, case management of malaria, diarrhoea and respiratory infections); promotional CHWs (providing health education to communities); and disease-programme CHWs (providing specific services for the programme). We will use the term CHW to include CHWs in Sierra Leone and DRC and the CHAs in Liberia. None of these CHWs are salaried but instead receive allowances.

The role of CHWs in fragile contexts is emerging as critical, but the evidence base of what kind of support works best is still weak. Like other health workers, CHWs need support to ensure that they contribute effectively to health programmes, health system strengthening and UHC [ 15 , 16 , 17 , 18 , 19 ]. Management challenges, similar to those of managing other cadres of health worker, relate to improving attraction, retention and performance. While there is some literature on the application of individual human resource management (HRM) practices for CHWs in fragile settings [ 20 , 21 , 22 ], there is little evidence on the coordinated HRM approach to support CHWs, whereby HRM practices are designed to not only address expectations but also ensure that the CHW programme meets its goals [ 6 , 23 ]. This paper will present qualitative evidence from three fragile settings on experiences of managing CHWs and synthesise recommendations for best approaches to support this critical cadre.

Study design

We used qualitative research methods to explore the management of CHWs in the three settings. This generated in-depth and contextual information about CHWs’, managers’ and decision makers’ experiences and perceptions as well as exploration of reasons behind their answers through probing questions [ 24 , 25 ]. We used three methods: document review and key informant interviews with decision makers and managers, life history interviews with CHWs in Sierra Leone and document review and key informant interviews only in Liberia and DRC.

Study settings

In Sierra Leone, two districts—Kenema and Bonthe—were selected following discussions between the research team and the CHW Hub in the Ministry of Health and Sanitation. Kenema is in the Eastern Province, is large with urban and rural areas and was heavily affected by the Ebola outbreak. Bonthe district is in the Southern Province, is hard to reach, riverine with several islands, and was less affected by the Ebola outbreak. We have worked in both districts before and have good working relationships with the District Health Management Teams. In Liberia, we selected two districts in Grand Bassa county: one district where international partners support CHW activities and one district where there is no current support for programme delivery. The research team has worked in this county before and has good relationships with the health management teams. We also conducted key informant interviews with national-level decision makers. In DRC, we worked in Ituri Province, a large province which is mainly rural and has experienced multiple inter-ethnic crises since 1999. As DRC is the second largest country in Africa and has decentralised health management to the provinces, we conducted the study at provincial level. Within Ituri province where our DRC co-author is based and has good relationships with the Provincial and District Health Offices, we selected two districts—Aru district (mainly rural) and Bunia district (urban).

Data collection

Key informant interviews with decision makers and managers: Using country tailored topic guides, these interviews explored how CHWs are managed and supported. Decision makers and managers were purposively selected based on their involvement in developing community health policies, knowledge of community health programmes and managing CHWs. Table 2 provides an overview of the decision makers and managers included in the study in the three country settings. The research teams in each country conducted the interviews in the participants’ workplaces, in English (Liberia), French (DRC), and English or Krio (Sierra Leone), lasting between 40 and 90 min. They were recorded following consent of the participants.

Life history interviews with CHWs (Sierra Leone only): CHWs provided a personal account using their own words of their life and career over time [ 26 , 27 ]. We selected CHWs from the two districts in Sierra Leone, ensuring that we had male and female CHWs, from different villages, and a range of ages and length of experience as a CHW (Table 3 ). CHWs drew a lifeline illustrating their life from birth until the present day, with an emphasis on their jobs and major life events. The researchers used this to explore their career with probing questions around becoming a CHW, their experiences as a CHW, support and human resource management strategies, relationships and interactions with existing cadres in the health system and informal workers and coping strategies. The interviews were conducted in Krio language and in private rooms in health facilities.

Document review: We reviewed key documents from the Ministries of Health in each country such as CHW policies, guidelines and training materials to answer key questions: What are the different types of CHWs? How are CHWs managed and supported in their work? What are the challenges to implementing CHW programmes? We extracted, summarised and synthesised text for each question.

We transcribed all recordings verbatim and where necessary translated into English. We used the thematic framework approach to analyse the qualitative and document review data [ 28 ]. In the three settings, the teams reflected on the data as it was being collected and identified emerging themes for further exploration. We developed one coding framework (Table 4 ) for the three settings developed from the topic guides, research objectives, themes emerging from reading the transcripts and data and the HR and Community Health Worker frameworks (Fig. 1 ). The country teams applied the framework to the transcripts and data and developed charts for each code. The lead author then identified the initial themes through review of the initial analysis in each country and then shared these with the other authors to interrogate and refine. Consensus on key themes (e.g. HR outcomes, attraction, selection—gender and literacy, training and development, complex and challenging supervision, remuneration delays and repercussions, provision of supplies, challenges of rewarding and sanctioning volunteers) across contexts was reached through iterative reflection which involved the authors reviewing the themes, checking that the data supports the themes and adapting them. This was done by dialogue through e-mail and Skype and over a period of several months and consolidated in an analysis and writing workshop in Sierra Leone with all country teams present. By involving all authors, with different professional, personal and geographical backgrounds we ensured that different interpretations and perspectives were incorporated in the analysis [ 29 , 30 ]. The qualitative analysis software, NVIVO, was used to help manage and analyse the data. These themes were discussed, and recommendations developed in a participatory workshop with CHWs, managers and decisions makers in Sierra Leone.

Framework to examine the human resource management of CHWs in fragile and conflict-affected settings

We developed a framework to examine the HRM of CHWs in fragile settings (Fig. 1 ). This draws upon the CHW performance framework by Kok et al. [ 21 ] and the HRM approach defined by Armstrong [ 31 ] as “a strategic approach to acquiring, developing, managing, motivating and gaining the commitment of … the people who work in [the organisation] and for it” [page 33]. The HRM processes of attraction and selection, training and development, supervision, provision of supplies and performance management are influenced by the hardware (e.g. policies, guidelines, structures) and software (e.g. values and norms of the actors, relationships between the actors) of the community and health system and the broader context in which they exist. These influence the HR outcomes such as numbers and characteristics of CHWs and reported attrition. This framework provides the structure for reporting the results.

HR outcomes

From the national decision makers and district managers, we found that there were fewer female CHWs in Sierra Leone and Liberia. In Sierra Leone, 14 935 CHWs were trained across the country: 10 652 males (71%) and 3283 females (29%). In Grand Bassa County, Liberia, there were 91 male (90%) and only ten female CHWs (10%). In DRC, district managers reported that in Bunia district, there were 480 CHWs, of whom 288 (60%) were female, and in Aru district out of 840 CHWs, 403 were female (48%). From the interviews with decision makers and managers in DRC, high attrition rates were reported, especially among younger and male CHWs who leave when they find better job opportunities. In Liberia and Sierra Leone, attrition issues were not reported by the decision makers, managers and CHWs probably as the community health policies have only recently been implemented.

Attraction: wanting to serve their community

In Sierra Leone, most CHWs reported that they provided community health services before joining the new CHW programme, such as through being a traditional birth attendant or contact tracer during the Ebola outbreak. They wanted to continue to serve their communities and save the lives of pregnant women and children. In DRC and Liberia, decision makers and managers reported that CHWs were attracted to the role in the expectation of remuneration and wanting to serve their community.

Selection: the tricky issues of literacy and gender

The Community Health Policies in Liberia and DRC include literacy as a requirement for being a CHW [ 9 , 10 ]. In Sierra Leone, the CHW policy states that “ literacy and basic numeracy is highly valued and preferable, but is not strictly required, especially in the case of female candidates ” [ 9 ], p21]. Decision makers and managers in DRC and Liberia reported that it was challenging to find people with reading and writing skills who wanted this role. Decision makers and managers in Sierra Leone reported that some CHWs were unable to read or write which created problems with training, drug administration and reporting. Decision makers and managers in all settings and the CHWs in Sierra Leone explained that conflict disrupted education and this influenced the literacy and numeracy for some community members. Decision makers and managers in all settings recommended that basic literacy training is needed.

In Sierra Leone and Liberia, the policies state a preference for women, while in DRC, there are equal opportunities for men and women in the selection process [ 9 , 10 ]. However, in all contexts, policy ideals were mediated in practice by gendered community norms. In both Sierra Leone and Liberia, there were more male CHWs. Interviews with managers and decision makers in Sierra Leone and Liberia explained that community-based selection processes, women’s limited voice and presence in community affairs, along with a culture of selecting men for paid work, emerged as reasons for more male CHWs. As one manager explained:

When it comes to community affairs, only men show up, women don’t, they don’t even talk. Should they show up, then the community members would have selected them . (District manager, male, Sierra Leone).

In DRC, the managers explained that there were more female CHWs where there were women’s associations. These associations advocate for women and influence husbands’ and relatives’ permission for women to join the programme.

“ Here in our health district, where you find nearly half of community health workers are female, there are women associations, but where there are no women associations, you find that there are more male community health workers”. (District manager, male, DRC)

Training and development—opportunities for learning and supporting each other

In all three settings, the policies state that the CHW role is to connect communities and the health system, providing basic health care services, health promotion, health surveillance and mobilising communities [ 9 , 10 ]. The policies in all settings map out the training requirements for the CHWs (Table 5 ).

In Sierra Leone and Liberia, initial training was done in modules over 1 year or 4 months, with each module focusing on different topics. Most managers and CHWs in both settings described the training positively, specifically the mix of classroom training and practical community experience, the provision of a manual, learning how to visit households, communication skills and developing a sense of a cohort amongst the CHWs. One participant in Liberia described: “In the evening, they will sit in group, ask one another questions… when we were in the training today, what you didn’t understand? - The person will explain, they all put their minds together”. (Facility manager, female, Liberia)

In Sierra Leone, CHWs reported that CHWs with limited literacy found it difficult to use the manual, make notes and review what was learned during the sessions. In Liberia, managers wanted to be more involved in the training so that they could understand what was expected of the new health cadres.

In DRC, training was reported to be more ad hoc. Managers explained that it was usually organised by the district health authorities when new CHWs were selected, or when there were national health campaigns. Managers reported that female CHWs were less likely to attend training because of their gendered responsibilities within families.

Supervision—complex and challenging

Supervision of CHWs is a complex process and is the responsibility of a variety of different actors within the health system as reported in the policy documents (Table 6 ). There are some successes with this supervision but also significant challenges.

In Sierra Leone, many CHWs were positive about the peer supervisors, reporting frequent contact and help with completing reports. This motivated them to visit households, to follow the guidance given during training and to contact the supervisors when there were problems that they could not solve. As one CHW explained:

Every week the peer supervisor visits. It wakes me up to do my work. (CHW, male, Sierra Leone)

Some CHWs in Sierra Leone valued the meetings at the local health facilities where they could discuss issues and collectively solve problems:

Well the meeting is good, it brings cordiality and makes the work easier because any issue you do not understand you can bring it up and they explain it to you. (CHW, male, Sierra Leone)

In DRC, facility managers reported linking their supervision visits to other activities and providing training and advice. They thought the supervision worked well in identifying where the CHWs were working well and any issues, and this supported the CHWs to provide services.

...for the supervision, we go on the ground, we see what they are doing … at the facilities level, there are other orientations we give them, for example organising census within the health catchment area. (Facility manager, female, DRC)

There were several challenges with supervision. Peer supervisors and the District CHW focal persons in Sierra Leone and the CHSS in Liberia reported no bicycles or transport allowance as a significant barrier to their work. They often travelled long distances, sometimes at their own cost. One CHSS explained the challenges she faced:

I have to walk on seven hours distance to go for supervision, and then I have to supervise the CHAs on two hours. Before I come back, darkness will catch me and I will sleep there. No compensation. I spend more time in the field, so they should see about compensating me for accommodation and feeding. These things can really affect performance. (Community manager, female, Liberia).

Workload was also cited by managers in all settings as a key reason for supervision structures not working effectively. As one key informant in Liberia explained: “In the policy it says that CHSS will visit the CHA twice a month. The reality is that, some of them have not been able to reach to the CHA to supervise them even once a month. This is because the CHSS must work 20% of their time in the clinic, but the clinic work takes up most of their time”. (National decision maker, male, Liberia)

In Sierra Leone, a few CHWs reported that the relationship between CHWs and health facility staff is strained in some areas: CHWs feel ignored, are not given drugs or supplies and are not selected for other community activities despite this being a good income source. One CHW reported being threatened by a manager: “He also told us that if he had known earlier, he would have removed our names from the programme because we’re not cooperative - we don’t give him any money from the incentive we are receiving.” (CHW, Sierra Leone, female). Some managers explained that some health facility staff see CHWs as taking their work (which provides income that supplements their sporadic salary) and being given drugs that are in short supply.

Remuneration—delays and repercussions for retention and performance

In Sierra Leone and Liberia, the community health policies state that CHWs should be given allowances. In Sierra Leone, CHWS should receive 100 000 Leones plus 50 000 to 80 000 Leones for transport and other logistics per month (equivalent of US$18–24). The monthly salary for a nurse is approximately US$400. In Liberia, each CHW should be given US$70 per month which is based on provision of a package of health care at the household level through a minimum of 4 h work per day. The monthly salary for a nurse is approximately US$350. The policy also states that they may also receive other forms of motivation, such as transportation, gifts in-kind, employment and advancement opportunities, involvement in national campaigns and recognition events.

Most CHWs in Sierra Leone perceived the allowance to be too small to support themselves and their family and in relation to the amount of work they do.

We want them to increase our salary - pay us monthly and increase on the amount. Monthly payment is the best as we have personal commitments that require financial inputs and the amount is small, we want them to look into it critically ….and also they should take into consideration that the job is an everyday job and it involves us working with our community, it is very tedious and we even work at night when there are emergencies. (CHW, female, Sierra Leone)

In both settings, there were significant delays in CHWs receiving their allowances. In Sierra Leone, at the time of data analysis, district managers reported that CHWs had not received their allowance due to delays in setting up mobile phones and accounts to receive money. CHWs reported that they used their own money to travel around their community and attend meetings and training. Community members do not help CHWs with their farm work, and so CHWs have less time to do health work. In Liberia, managers reported that bureaucracy between the donor and the Ministry of Health has led to payment delays.

In DRC, CHWs are voluntary roles without remuneration. However, managers reported that the CHWs receive some financial compensation if they work for specific programmes, go on training, or from sales of health products such as bed nets. This money is irregular, and the amount varies per month, depending on their sales, the training and work opportunities and how much the programmes provide. They often have to use their own resources to visit households or attend meetings at facilities. Managers explained that despite being told about the voluntary nature of their work during the selection process, CHWs still expect to receive financial incentives. As this expectation is not met, they look for other work. Managers suggested that regular payment would motivate CHWs to work and reduce attrition.

...as they have to work voluntarily in context where finding a paying job is not easy. So, at the same they have to work for their survival and also for community. In a poverty context, their work is not easy. (District manager, male, DRC)

Provision of supplies—promised but not always received

In Sierra Leone and Liberia, the community health policies emphasise the provision of adequate and quality assured medicines and supplies to treat uncomplicated malaria, acute respiratory infection and diarrhoea. In all three countries, managers and CHWs (Sierra Leone only) reported that challenges in the drug supply chain have led to delays in CHWs receiving medicines on time to treat patients, meaning their role has become predominantly to make referrals. In both Sierra Leone and Liberia, CHWs report to their supervisors when they run out of drugs or supplies, and then collect them from the local facility. Despite a proportion of drugs at the facility being allocated to CHWs, most drugs were used at facility level. In addition, Sierra Leonean CHWs reported spending their own money to travel to the health facility only to find either the drugs or the staff not there.

The distance we cover from our own community to the PHU, we go for drugs and drugs are not available, they will inform us that they haven’t received supply. (CHW, male, Sierra Leone)

CHWs and peer supervisors in Sierra Leone suggested that some drugs should be kept with the peer supervisors so that they can quickly “top up” the CHWs supply. In Liberia, managers recommended more rigorous and transparent process for allocation of drugs to CHWs is needed.

Despite promises of equipment and materials such as test kits for malaria, uniform, badge, torches, drugs boxes, thermometers, stationery and bicycles, CHWs in Sierra Leone and managers in all settings reported that most CHWs have not received these items. These are critical to CHW roles in promoting health and recognising and treating illnesses, making visits at night or in rainy weather and community recognition and trust.

CHWs need kits and identification card - some people will not speak to them or accept them without ID card, kits, rain boots, rain coats. (Community Manager, male, Sierra Leone)

Performance management—the challenges of rewarding and sanctioning volunteers

In the three countries, there is no written guidance or indicators on how to manage or measure CHW performance. In practice, the facility managers reported that they assess CHW performance through their monthly reports of activities. In Sierra Leone, a health facility manager and peer supervisor gave each CHW a score based on the numbers and quality of household registrations and completed registers. Managers also reported that communities through the health facility committees play a role in monitoring CHW activities in Liberia, Sierra Leone and DRC. The committees review CHW reports, attend facility meetings and provide feedback from community members on the CHWs’ work. One manager in Sierra Leone explained how the committee identified a poorly performing CHW and worked with the managers to solve the problem:

They told me they cannot go to the man because he is always drunk so we have to change that CHW. (District manager, male, Sierra Leone)

Managers, in these resource poor settings, developed innovative ways to reward well-performing CHWs but found it difficult to sanction poorly performing ones (Table 7 ).

The managers in Liberia, DRC and Sierra Leone recognised the limitations of these rewards but perceived them to be valuable in supporting CHWs. As two managers explained:

As for rewards, we do not do something special, as we do not have money. But, whenever there is a meeting, we prepare food, and we eat together, and get to know each other much better. (Facility manager, female, DRC) I didn't give them any reward, but the means…when a programme came, I didn't just let one keep working and working I started to rotate them when different programmes came and that allowed them to re-engage. (Facility manager, male, Liberia)

CHWs in Sierra Leone reported that the praise and recognition of the community is important in motivating them to continue their work. They wanted this recognition to be translated into more practical measures such as help with farm work and exemption from community tasks:

The community people sometimes give me words of moral boost and sometimes give me food items like fish, cassava. (CHW, male, Sierra Leone) To make my job easier the community should at least assist me not financially but like if I want to make a cassava garden, they help me out, but they had not started doing that. (CHW, male, Sierra Leone)

This is the first study that has engaged with CHWs, managers and decision-makers and documented their views and experiences of the CHW programmes in the three fragile settings of Sierra Leone, Liberia and DRC. All settings have experienced and, in the case of DRC, are still enduring both conflict and disease outbreaks. All countries are now also responding to COVID-19 outbreaks, and the learning here can inform these responses. In Sierra Leone and Liberia, the 2015 Ebola outbreak brought the impetus for change in community health with new policies in both settings, with substantial financial and technical support from international partners. This is in sharp contrast with DRC where there have been no new community health reforms. Resources are scarce and trickle down from central level to provinces and districts. CHWs play a critical role in providing services to communities and linking communities to the health system in these settings. However, there are challenges to managing this cadre of health worker to ensure that they fulfil this role. Here we discuss these challenges and synthesise recommendations for best approaches to support this critical cadre, which are summarised in Table 8 .

Opportunities for selection

Conflict and fragility disrupts education of community members so that they may not have the literacy levels required for the CHW role, as seen in all contexts of this study. This has implications for the selection of CHWs, their role, training and performance. Policy preferences about selection need discussion at the community level, so that they reflect the realities of the communities. For example, community acceptability for certain services by a specific gender such as sexual and reproductive health [ 32 , 33 , 34 , 35 ]. To encourage selection of women, there is a need to sensitise communities to support and motivate women to volunteer and be selected at the same rates as men. When financial incentives are offered, communities select men who they deem more deserving of paid work, but are more likely to leave the role [ 36 , 37 ]. Further, a lack of visibility of women in public limits their selection opportunities as demonstrated in Sierra Leone. Ensuring women’s active participation in community dialogue are particularly critical in fragile contexts and the creation of spaces where women are listened to and feel comfortable to talk and the development of further role models could support this. Women may also feel more empowered to volunteer when associated with community development programmes or women’s groups, as demonstrated in DRC.

Changing roles of CHWs—the need for ongoing supportive training

CHWs are expected to undertake a wide range of activities including service delivery, health promotion and community mobilisation which reflects findings from other studies [ 6 , 22 , 38 ]. These areas will change over time as seen with the Ebola outbreak and the current COVID-19 pandemic. For CHWs to work effectively across these areas, substantial pre and in-service training is needed. This study shows that the modular, mix of classroom and practical teaching and locally based approach worked well in Sierra Leone and Liberia, which helped to develop a sense of a cohort of CHWs who support each other. Building a sense of camaraderie was also shown to be valuable to CHWs undergoing training in Mozambique [ 37 ]. Similar approaches should be applied for ongoing training—flexible, module-based approach close to CHWs homes to avoid long periods of time away from household responsibilities or by distance through mobile apps when travel is restricted. Modular-based training allows for CHWs to accumulate credits from individual modules and also take up modules again if interrupted by conflict or other factors. Encouraging peer support is critical for CHW retention and performance. Mechanisms include peer-to-peer discussions at the routine CHW meetings at the health facilities, mobile messaging and regular in-service training. In the study settings, a key role for CHWs is health surveillance. The new community health policies in Liberia and Sierra Leone were introduced after the 2015 Ebola outbreak, when preventing another outbreak was a national priority. This focus is reflected in the CHW training in Liberia and Sierra Leone, which emphasised household registration and monitoring for disease outbreaks. Critical to effective surveillance is the building of and maintaining trust so that communities are willing to disclose illnesses and seek care and do not perceive this as “spying”. This is particularly important in fragile contexts where many individuals and communities have faced trauma and resonates with the recent Ebola outbreak in DRC where CHWs played an important role in allaying fears about Ebola and supporting the Ebola vaccination campaigns [ 39 ].

CHWs need a package of support

Training alone is not the panacea to effective community health programmes [ 6 ]. It is clear from this study that a package of supportive supervision, community support, regular provision of supplies, rewarding good performance and regular remuneration is vital to retention and performance of CHWs. But there are challenges with numbers of staff, limited transport and materials for supervision, scarcity of supplies at health facilities for the CHWs, inadequate recognition and support from some communities and unfulfilled promises about financial allowances. Supportive and responsive problem-solving supervision is critical. It should not be just top-down but capture local issues and solutions and inform health system priorities [ 40 ]. Innovations in supervision such as the peer supervisors in Sierra Leone and the CHSS in Liberia take the burden of supervision away from already stretched facility health workers. But for these cadres to really help CHWs, they need adequate support and recognition themselves.

Regular supply of drugs and materials is critical to the role and reputation of CHWs and for securing community recognition and trust. Health systems in fragile settings struggle with ensuring adequate supplies to facilities at all levels and in particular to remote areas because of limited finances for these commodities, weakened infrastructure and unsafe travel [ 41 , 42 ]. Resources can also be a source of tension between CHWs and health workers as we have seen in Sierra Leone. Perhaps, this is a sign of a greater tension about how CHWs fit within the existing health system and how they work with facility health workers. Understanding this tension and openly talking about this would be a start to addressing this important issue.

Remuneration challenges have been a source of discontent amongst CHWs. CHWs should not be required to spend their own money and become impoverished through undertaking this role. Out of pocket payments by CHWs, linked to moral economies of care, add increased financial pressure to those least able to afford it and are not unique to these contexts [ 43 , 44 , 45 , 46 ]. Clear communication of the incentive package, as well as any delays is needed, not just with the CHWs but with other health workers and communities, so that they understand the constraints under which CHWs may be working. Irrespective of remuneration, community support—helping with farm work, providing transport and relieving them from other community duties—is needed [ 37 ]. Health system actors play an important role in encouraging community structures to support and value CHWs.

There are several limitations to the study. This study draws on qualitative methods and explores the issues from the perspectives of policy, CHW, decision makers and managers and does not reveal other important perspectives, such as those of the community and patients. The sample of CHWs was relatively small at 15, although this included a mix of genders, experience and settings. In DRC and Liberia, we did not include CHWs as this was designed as a rapid appraisal of the current situation in these two settings which included policy review and key staff knowledgeable about the CHW programmes. Further research that explores CHW direct experiences of management practices in these settings is needed. The participatory workshop in Sierra Leone enabled the findings to be validated with CHWs and key stakeholders in Sierra Leone and recommendations for managing CHWs to be developed grounded in the realities of fragile settings. Engagement of key stakeholders in this workshop illustrated their willingness to use research findings to adapt the policy and its implementation. Similar workshops in DRC and Liberia would be useful.

In contexts of fragility and crisis, including disease outbreaks, CHWs interface role between communities and the health system is critical because of their embedded positionality and the trust they (often) have. Their role is further amplified due to severe human resource shortages particularly in rural areas. Common to all CHWs, they need support from an HRM perspective to make sure they can fulfil this role. CHWs, particularly in FCAS settings, have the most challenging of jobs and this is where HRM systems need to be built around them and respond to their particular evolving realities and contexts.

Availability of data and materials

The datasets are available from the corresponding author on reasonable request.

Abbreviations

Community health worker

Community Health Services Supervisors (CHSS)

Democratic Republic of Congo

Fragile and conflict-affected settings

Human resources

Human resource management

Universal Health Coverage

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Acknowledgements

We thank all the research and workshop participants who shared their stories, knowledge and ideas so readily.

This work was supported by the UK Department for International Development under Grant PO 5247. The funder played no role in the design of the study and in collection, analysis and interpretation of data and in writing the manuscript.

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JR conceptualised and designed the study, coordinated the data collection, supported the analysis and interpretation of the data and drafted the manuscript. HW, AI and AJB contributed to the design of the study, collected and analysed the data in Sierra Leone and reviewed drafts of the manuscript. GN, KK and LD contributed to the design of the study, collected and analysed the data in Liberia and reviewed drafts of the manuscript. AB and RS contributed to the design of the study, collected and analysed the data in DRC and reviewed drafts of the manuscript. TM contributed to the analysis and interpretation of the data and reviewed drafts of the manuscript. ST contributed to the conceptualisation and design of the study and analysis and interpretation of the data and reviewed drafts of the manuscript. All authors read and approved the final manuscript.

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Preparing for the next health crisis: COVID-19 showed the importance of community-engaged research

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Community-engaged research involves the active and meaningful involvement of people directly affected by a research problem. Like most activities that require personal interaction, this type of research was disrupted by the restrictions of the COVID-19 pandemic.

This research approach is intended to build trustworthy relationships and yield mutual benefits. Community-engaged projects have garnered attention over the past two decades as they focus on tackling inequities , which often arise during public health crises.

Conducting community-engaged research has several benefits, like increasing the relevancy of studies , incorporating lived experience , and supporting the sharing of findings back to affected communities. Community engagement also plays an important role in emergency responses. Community-engaged emergency responses can promote the uptake of public health interventions and bolster advocacy efforts.

Community-engaged research during the pandemic

Researchers’ ability to engage with communities was impacted by the COVID-19 pandemic. Public health measures focused on preventing the spread of COVID-19 (such as limits on in-person gatherings) halted traditional forms of fieldwork. For example, researchers could not safely host in-person interviews. They were forced to quickly adapt to unfamiliar virtual teaching and learning platforms.

At the same time, civil society organizations (CSOs), non-profit agencies operating separately from government and business, were stretched thin as their demand soared. These organizations are sought after as community research partners since they are embedded in the communities they serve and provide crucial services to community members. Examples include the United Way BC and Sources Community Resource Centre , which provide direct services, support and relief to communities across B.C.

In 2023, the Pacific Institute on Pathogens, Pandemics, and Society ( PIPPS ) hosted a roundtable with community-engaged researchers at Simon Fraser University to learn about their experiences engaging with communities amid the pandemic. Findings from our roundtable, supplementing this article, have also been included in our Community-Engaged Research during Health Crises: Engaging with Civil Society Organizations handbook published by PIPPS and SFU Community Engaged Research Initiative .

Barriers to conducting community-engaged research

Roundtable attendees first discussed the challenges of conducting research remotely, with one noting how their research plans were put on pause for more than three months because of pandemic-related restrictions. Attendees also highlighted how managing multiple forms of online communication disrupted their work-life balance.

Several attendees found it difficult to recruit research participants; they discussed the challenges of the digital divide , referring to the gap between communities’ access to information and communication technologies.

Researchers faced challenges with ethics review boards, which did not consider the risks and unique considerations of engaging communities in a public health crisis. While ethics applications were expedited, researchers felt they lacked guidance for community-engaged research during the pandemic.

Researchers also found it hard to maintain relationships with communities amidst the pandemic. Some key ways researchers connect with communities are through sharing findings and hosting food-sharing events, such as lunch and learns. These opportunities were not available during the pandemic. In addition, many of their long-standing relationships with CSOs were strained as they experienced layoffs and increased demand. Researchers did not want to impede on CSOs’ frontline pandemic-related efforts.

Opportunities emerging from the pandemic

Despite the challenges they faced, researchers identified a range of opportunities that emerged as a result of the pandemic. They noted how they could increase the scope of their projects since virtual tools, like Zoom, allowed them to reach rural and remote communities. These platforms also provided low-barrier forms of participation for participants with accommodation needs.

Researchers also discussed how the pandemic forced the “professional veneers to slip away.” Over time, researchers connected on a more vulnerable level with their community partners, as they all attempted to get through the pandemic. Collectively, they showed up in their most authentic way and practised humility in their partnerships. Moreover, research teams emphasized the importance of building community, which reinforced their commitment to mutual benefit .

Through their community-engaged work, some researchers hired people with lived experience of the research problem of interest. This opportunity emerged during the pandemic. Compensating members of the research team for their knowledge strengthened the relevancy of their findings as they directly learned how the pandemic was impacting distinct groups.

Lessons learned: Conducting community-engaged research in future crises

Participants were asked what they would do differently in future health crises. Some discussed the significance of holding informal check-ins with their teams to openly discuss professional and personal challenges. Others pointed to the need for knowledge and resource sharing with other community-engaged researchers, to break down silos.

Additionally, attendees underscored the benefits of interdisciplinary research teams , bringing together diverse skills and expertise. In health crises, they aim to work collaboratively with academics and service providers from CSOs.

Based on the key themes of the roundtable, three recommendations emerged to support community-engaged research in future public health crises:

1) Post-secondary institutions should develop guidance for community-engaged research in health emergencies

Since post-secondary institutions increasingly recognize the importance of community-university partnerships , institutions should create protocols to support community-engaged research in public health crises. Attention should be paid to crisis-related considerations, including funding sources, resource challenges and ethics.

2) Develop targeted funding opportunities for community-engaged research partnerships

During the pandemic, research unrelated to COVID-19 faced funding drawbacks and resource constraints . This may have secondary effects in the “ post-pandemic era ,” especially for projects addressing health inequities. To avoid these unintended consequences, partnerships should be proactively supported by post-secondary institutions and funding agencies, to provide research partners with honoraria for their time and insights shared, and to help academic researchers build networks for engagement.

3) Prioritize capacity-building in partnerships

Mutual benefit is a guiding principle of community-engaged research . In partnerships, academic researchers often benefit through career advancement and a sense of fulfillment . Yet, community partners are not always assured the same benefits. To ensure mutual benefit, capacity building , referring to the process of building skills, abilities and resources, should guide community-engaged research partnerships. Both academic researchers and community partners bring significant assets to projects; these assets and training gaps should be uncovered at the outset of projects and considered throughout the partnership.

In addition to these recommendations, a repeated theme for participants was how community-engaged research should be viewed as a fundamental component of their work, as opposed to an afterthought. Rather than treating community-engaged research as a “ peripheral activity ,” the principles of community engagement should be embedded in research, teaching and learning.

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Although several studies analyzed the impact of e-waste recycling on human health, most publications did not differ between e-waste workers and bystanders, such as residents. This could lead to an underestimation of health effects in workers. In addition, frequently reported surrogate findings do not properly reflect clinical significant health outcomes. The aim of this review was to analyze the direct health effects of informal e-waste recycling in informal e-waste workers.

According to PRISMA guidelines, we systematically searched 3 databases (Embase®, PubMed®, Web of Science) for studies from low- and middle-income countries published in German or English between 1980 and 1 November 2021. Of the 2613 hits, 26 studies (cross-sectional, longitudinal and case-control studies) met the specified criteria and were included. We categorized the results into hormonal, respiratory, renal, cardiovascular, musculoskeletal health and general symptoms in informal e-waste workers.

Exposure to e-waste was associated with altered lipid metabolism, thyroid hormonal imbalances, impaired fertility, renal dysfunction, increased prevalence of respiratory symptoms, asthma, cardiac arrhythmias, hypertension, musculoskeletal pain, injuries in up to 89% and skin disorders in up to 87.5–100% of e-waste workers.

Due to inconsistent findings, weak associations or poor study quality, it has rarely been possible to establish a causal relationship between informal e-waste work and health effects, except for injuries or skin conditions. Besides high-quality studies, a collective national and international political focus on e-waste disposal is needed.

Introduction

The increasing amount of electronic waste is a global problem [ 1 ]. It is considered to be the fastest growing waste-stream in the European Union (EU) driven by the rapid increase in the use and disposal of electronic devices [ 2 , 3 ]. When electrical and electronic equipment (EEE) is disposed with no intention of reuse, it becomes e-waste [ 4 ].

According to the United Nations (UN) Global E-waste Monitor, the global e-waste increased from 44.4 million metric tons (Mt) in 2014 to 53.6 million Mt in 2019. This number is expected to rise to 74.7 million metric tons by 2030. Less than 20% of the global WEEE were documented to be properly recycled and collected [ 4 ]. The large undocumented part of e-waste ends up in landfills, is incinerated or illegally shipped to low- and middle-income countries where regulations may be non-existent or inadequate and the processing is performed in an inferior way [ 1 , 5 , 6 , 7 ]. High-volume informal recycling and processing of WEE have been reported in several countries, including China, Ghana, Nigeria, India, Thailand, Pakistan and Vietnam [ 8 , 9 , 10 ]. Since e-waste contains a significant number of materials of value, the recycling process holds an economic opportunity for developing countries. Socially disadvantaged populations depend on trade, repair, and recuperation of materials from e-waste as a source of income [ 8 , 11 ], and many e-waste workers are not aware of the hazards and potential health risks associated with e-waste recycling [ 7 , 9 ].

The informal recycling process includes collecting, manual dismantling, separation, and mechanical pre-treatment of e-waste, open burning, pyrometallurgical processes like refining, smelting, combustion and incineration using high temperatures as well as acid baths and cyanide salt leaching [ 12 , 13 ]. The severity of toxin release and exposure depends on the respective work focus of the workers during the recycling process [ 13 ].

In a systematic review Grant et al. examined the health consequences of general exposure to e-waste. They discovered associations between exposure to e-waste and a number of harmful health effects, including poor birth outcomes, delayed neurological and behavioural development, (inconsistent) thyroid function changes and a higher chance of developing chronic diseases in later life [ 9 ]. According to the updated version from Parvez et al., possible connection between long-term exposure to e-waste and DNA damages, telomere shortening and alterations in immune system function were found [ 14 ]. However, in these systematic reviews no differentiation has been made between the group of e-waste workers and bystanders, including residents in e-waste recycling areas. It can be assumed that e-waste workers who are directly involved in the recycling process are far more exposed to hazardous substances compared to bystanders or residents, who may only be indirectly exposed through the release of pollutants into the surrounding air, water, food, or soil. This may lead to a significant underestimation of the health impacts of informal e-waste recycling on e-waste workers.

Therefore, in this review we particularly focused on e-waste workers involved in informal e-waste recycling activities in order to assess and summarize health effects of informal e-waste recycling [ 15 ].

Materials and methods

Protocol and registration.

The systematic review on health effects in e-waste workers was carried out using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines [ 15 ]. We prepared a systematic study protocol which we submitted to the International prospective register of systematic reviews (PROSPERO) by the university of York [ 16 ]. The review was accepted and registered on 21st January 2022 under the record number CRD42022299134. It can be found under https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42022299134 .

Search strategy and eligibility criteria

The research question as well as the systematic search strategy was designed following the PECO scheme (Population, Exposure, Comparison and Outcome)(Table 1 ). To investigate the health effects, symptoms and diseases associated with working in the informal e-waste sector, we exclusively included workers in the informal e-waste recycling sector with occupational exposure during the recycling process. Furthermore, the outcome had to be a clinical symptom or a disease. Surrogate outcomes, such as oxidative stress or DNA damage that does not necessarily lead to a clinical effect were excluded. Residents, bystanders, people with no connection to e-waste recycling were strictly excluded.

We included prospective, observational, cross-sectional or case-control-studies, (systematic) reviews and Meta-analyses in low- and middle-income countries in the informal e-waste recycling sector. Case reports, methodological or interventional studies and all other kinds of studies were excluded, as well as studies in high income countries, with a context of formal e-waste recycling or studies that do not match the above-mentioned criteria. Studies published in German or English between 1980 and 01.11.2021 were included.

We searched three electronic databases, Embase®, PubMed® and Web of Science. Additional further studies were included out of the references of the screened papers. To ensure that all potentially matching results were included, the keywords were merged using the Boolean operators AND (to combine the categories) and OR (to combine the keywords in a category) (supplemental section S 1 ).

The research was conducted on 25th November 2021 and a total of 2613 hits could be found in all three databases.

Screening process

The search results were extracted into an Excel spreadsheet and duplicates were removed. The articles were then systematically and independently screened by the two authors. First, a title screening and abstract screening with a selection process was carried out. A full text screening for the remaining articles followed subsequently. After each screening step, the selected studies were compared. In case of disagreement, the studies in question were checked again for the previously set criteria and discussed until a consensus was found. Each exclusion of a study was documented. The reasons for the exclusion were documented during the full-text screening.

Data collection (quantitative assessment)

A table containing all relevant information from each study was created. This data extraction was categorized into author and year, study design, setting and time, participants, exposure, measurements, outcome and if available effect parameters for each study. If presented, statistical mean, standard deviations, and p -value (‘bold’ if significant) were documented. Depending on the data situation and given statistics, socio-demographic information was extracted. Special attention was paid to the statistical differentiation of the e-waste workers from (if given) comparison groups (such as bystanders or residents).

Bias assessment (qualitative assessment)

The methodological qualitative assessment for each study was conducted independently by two authors. Subsequently, disagreements were reviewed and discussed until a common consensus was found. The bias assessment was carried out for each study using a checklist for measuring study quality initially published by Downs and Black [ 17 ]. The bias risk of the following categories was assessed: Internal validity bias (such as blinding of participants, data dredging or outcome measures), internal validity confounder (such as recruitment, losses of follow-up or randomization), performance bias, detection bias (like recall or information bias), attrition bias and reporting bias. In addition, a category with ‘other bias’ was recorded, where individually varying biases of the respective studies were recorded (such as selection bias and special features). The answer options were yes, no, and not applicable (n.a.). Each bias was given a risk rating that corresponded to the categories (mentioned above): low risk when all questions referring to a possible existing bias were classified as low risk, high risk if at least one question indicated a high risk for a possible existing bias, and when at least one question was answered with an undetermined response an unclear risk was assumed (Table S 2 ).

Since most of the study designs were cross-sectional studies, no ‘follow-up procedure’ had been applied within these study designs, as well as no ‘losses of follow-up mentioned’, which we then labelled as not applicable (n.a.). Only one Study had a longitudinal study design with a short follow up procedure [ 18 ]. Since no interventions were carried out in most of the studies, the questions about blinding of staff and participants could mostly be answered in the negative or as n.a.. The questions about confounders ‘random sequence generation’ and ‘allocation concealment’ were also classified as n.a. N.a. was not taken into consideration in the risk of bias assessment (Table S 2 ).

Study selection

The systematic literature searches in the three databases Pubmed, Embase and Web of Science resulted in 2613 hits. After removing all duplicates, all studies that did not meet the eligibility criteria were sorted out during title and abstract screening. The remaining articles, as well as one additional study [ 19 ] handpicked from a review, were included into the full-text screening.

26 studies met the eligibility criteria and were included in this systematic review [ 18 , 19 , 20 , 21 , 22 , 23 , 24 , 25 , 26 , 27 , 28 , 29 , 30 , 31 , 32 , 33 , 34 , 35 , 36 , 37 , 38 , 39 , 40 , 41 , 42 , 43 ], see Fig. 1 .

Flow chart of included studies during the screening process

Literature research and screening process

The 26 included articles consisted of 23 cross-sectional studies [ 2 , 3 , 4 , 5 , 6 , 7 , 8 , 9 , 10 , 11 , 12 , 13 , 14 , 15 , 16 , 17 , 18 , 19 , 20 , 21 , 22 , 23 , 24 ], 1 scoping review [ 34 ], 1 nested case-control study [ 33 ], 1 longitudinal cohort study [ 18 ] and comprised a publication period from 2008 to 2021. Geographically, the included studies have been conducted in the following regions:

Africa : Nigeria [ 19 , 32 , 34 , 36 ], Ghana [ 18 , 20 , 21 , 22 , 23 , 24 , 25 , 26 , 30 , 31 , 34 ],

Asia : Vietnam [ 28 , 29 ], China [ 38 , 39 , 41 , 42 , 43 ], Thailand [ 27 , 33 , 35 , 37 ], India [ 34 ],

South America : Chile [ 40 ].

We often found overlaps of health outcomes across categories. Therefore, we assigned each study to the category most likely to apply and the outcomes of the study to the relevant section. We grouped the studies into 7 categories depending on the mainly investigated organ system/health effect to provide a better overview of the results.

Hormonal health

A total of 9 cross-sectional studies on the potential effects of exposure to e-waste and hormonal health were identified (Table 2 ). In 2014 and 2015 Eguchi et al. analysed concentrations of thyroid hormones (THs) in serum samples from e-waste workers in Vietnam and found FT3, TT3 [ 28 , 29 ] and TT4 concentrations [ 29 ] to be significantly lower than the samples from the control group living at a rural site [ 28 , 29 ]. The multiple linear regression showed a significant association between specific circulating TH levels and organic contaminants (OC) [ 43 ].

Wang, H. et al. [ 38 ] included a third group of residents with environmental exposure, but without direct exposure through work in the informal e-waste sector, additionally to the e-waste worker and the control group of completely unexposed individuals. Significantly lower serum T3, fT3 and fT4 levels in e-waste workers and residents were found compared to the control group ( p  < 0.001) [ 38 ].

Yuan et al. reported significantly higher median level of serum TSH in e-waste workers [ 41 ]. A stepwise multivariate logistic regression analysis proofed previous exposure to e-waste and gender to be independent statistically significant predictors of serum TSH levels [ 41 ].

Focusing on lipid metabolism, Igharo et al. [ 32 ] investigated the lipid profile and atherogenic indices of e-waste workers in Nigeria. In comparison to the control group, the results of the lipid profile showed a significant increase in both total cholesterol and LDL cholesterol among e-waste workers. Notably, Atherogenic coefficient (AC), Castelli’s Risk index I and II (CRI-I and CRI-II) were significantly increased in e-waste workers [ 32 ].

They also examined serum samples from male e-waste workers for different fertility hormones. These hormones such as LH, FSH, Testosterone, Prolactin, Progesterone and Oestrogen were significantly lower in the serum of e-waste workers when compared to the control group while Inhibin was significantly elevated [ 19 ].

The male reproductive health of male e-waste workers was also analysed by Wang, Y et al. [ 39 ] and found to be negatively affected in terms of sperm quality. Sperm volume, number and motility were inversely proportional to the duration of handling e-waste and significantly lower in the e-waste workers than in the control group. Wang et al. identified exposure time, total polychlorinated biphenyls (PCBs), malondialdehyde (MDA) and Pb as predominant risk factors for semen quality [ 39 ].

Respiratory tract

Two studies focused especially on respiratory health in e-waste workers [ 18 , 33 ] (Table 3 ). In their longitudinal cohort study, Nti et al. measured the effects of particulate matter exposure on the lung function of 207 study participants using spirometry in Ghana. The regression analysis showed a significant change only in the PM10, PM2.5–10 fraction and the lung function parameter FEF25–75 [ 18 ]. Kuntawee and colleagues conducted a nested case-control study with asthmatic and non-asthmatic people from an e-waste recycling site and a control area. They couldn’t associate personal characteristics and occupational factors to asthma, but ‘years of work’, showed a statistically significant association to a higher likelihood of asthma [ 33 ].

In several studies conducted in India, Ghana and Thailand difficulties in breathing [ 34 ], as well as cough (also with sputum) [ 30 , 34 , 37 ], chest pain and other respiratory problems were significantly more frequently reported in e-waste workers than in controls [ 34 ].

Renal function

In Ghana, no significant changes in serum creatinine and eGFR were detected in a cross-sectional study at an e-waste recycling site between e-waste workers and control group [ 30 ]. (Table 4 ).

Neitzel et al. [ 35 ] performed blood tests with a focus on renal markers in e-waste workers in Thailand, where differing GFR values didn’t prove to be gender-specific significant, but they were found to be significantly correlated with lower lead and cadmium blood levels in females (Table 4 ). A regression analysis of GFR and lead exposure showed a significant positive correlation among informal e-waste workers [ 35 ].

Cardiovascular system

Concerning cardiovascular symptoms, abnormal heart beating was noted throughout various studies, [ 25 , 34 , 37 , 40 ] (Tables 5 , 8 ). chest pain was reported significantly more (25.3%) in e-waste worker than within the control group [ 30 ] (Tables 4 , 5 , 8 ). Adusei et al. measured hypertension across activity spaces in e-waste workers (without control group), which was most common in collectors (17.1%), followed by burners (9.1%) and dismantlers (7.7%) [ 22 ]. High blood pressure was also diagnosed among workers in other studies [ 25 , 34 ] (Tables 7 , 8 ). Diabetes, hypertension, shortness of breath and other cardiac symptoms showed no significant differences between e-waste workers and a control group in the study of Fisher et al. [ 31 ] (Table 8 ).

Hearing system

A personal noise measurement over a 24-hour period and a hearing assessment was aimed to assess the hearing capacity of e-waste workers in Agbogbloshie, Ghana. The presence of a noise notch was positive for both ears for 32%, for the right/left ear only in 20%/18% and negative for 40% of the examined EWW (Table 6 ) [ 26 ]. Self-reported hearing difficulties were recorded in 2 studies at 26% [ 25 , 26 ] and data on self-reported exposure to noise at work varied between 84.5% [ 26 ], 87% [ 24 ] and 95.9% [ 25 ] (Table 5 ). Burns et al. note that 24.6% of the e-waste workers experienced tinnitus very often and 3.5% of EWW were diagnosed with hearing loss. Difficulties in hearing were furthermore self-reported by 26.3% in a study conducted in Ghana [ 34 ] (Table 8 ).

Musculoskeletal system

Acquah et al. investigated musculoskeletal disorder symptoms among EWW in Agbogbloshie using the Cornell Musculoskeletal Discomfort Questionnaire (CMDQ). 90% of the e-waste workers reported heavy load handling, as well as 79% daily lifting, long walking (53%) and carrying (77%) [ 20 ] (Table 7 ).

Aquah and colleagues [ 21 ] calculated a pain score considering the body regions with statistically significant differences between e-waste workers and a control group for the lower and upper extremity as well as for the whole body. Comparing discomfort and pain prevalence for e-waste workers across body regions, discomfort prevalence was highest in the lower back area [ 21 , 34 ]. For knees, lower legs, and upper arms, chi-square tests revealed statistically significant differences in discomfort prevalence by job category, with the highest discomfort prevalence primarily among collectors [ 20 ]. (Tables 7 , 8 ).

General body pain was identified as a major health problem within Mishra’s research [ 34 ]. In Ghanaian e-waste workers pain scores for upper extremities were significantly higher [ 20 ], as well as back pain (including neck) and work-related injuries compared to the control group [ 31 ] (Table 8 ). That also showed the high injury prevalence in a study carried out in Nigeria on three e-waste sites. 89% of the e-waste workers had been injured at some time and 38% in the last 1–2 weeks [ 36 ] while 7% were hospitalized [ 24 ]. With 96% [ 34 ], 59.5% [ 36 ] and 65% [ 24 ] cuts were the most common type of injury as also burns [ 34 ], while hand, or fingers were the most frequently injured body part with 73% [ 36 ] and 46% [ 24 ]. 40% of EWW in Ghana reported occupational accidents [ 34 ]. The job category as a risk factor associated with injuries occurring within 6 months was confirmed with statistical significance [ 36 ]. Adusei et al. also investigated the prevalence of skin conditions in different recycling activities. Rashes were highly frequent with 87.5 to 100% in all recycling tasks, skin peeling was most common within dismantlers (7.9%) while burns (77.3%) and scars (28.6%) were mostly found in burners [ 22 ] (Table 7 ).

General self-reported symptoms and health outcomes

General moderate or poor health was mentioned by 24.6 to 50% of e-waste workers in two studies [ 24 , 37 ] (Table 8 ). Concerning dermal abnormalities, various skin problems with a prevalence up to 47.2% were reported among the workers [ 34 ]. Scars were noted to be very common [ 34 ], but overall skin rashes were the most reported [ 31 , 37 , 40 ] (incl. Fungal rashes [ 34 ]).

Seith et al. reported headache, bloody or watery stool and fever within the questioned e-waste workers [ 37 ] (with no control group) (Table S 1 ).

In the questionnaire by Feldt et al. no statistically significant difference could be found for fever, abdominal pain, nausea or vomiting, diarrhoea, headache and other health problems [ 30 ] (Table S 1 ). Only dizziness and vertigo were reported significantly more often by e-waste workers than by controls [ 30 ] (Table 4 ).

Similarly, the study conducted in Chile by Yohannessen et al., the informal workers reported considerably more and different symptoms than the control group, the differences did not prove to be significant [ 40 ]. Most of the chronic diseases studied were also only marginally more frequent among informal workers, except for the category “other chronic diseases” [ 40 ] (Table S 1 ).

Fisher et al. surveyed e-waste workers in Ghana for infectious diseases such as tuberculosis and malaria, mental disorders, digestive problems, coughing, eye injuries and hearing loss, which showed no significant differences compared to the control group, as well. Although e-waste workers suffered significantly more from red itchy eyes [ 31 ] (Table 8 ).

Decharat, however found significantly more insomnia, muscle atrophy, weakness, and headache as symptoms in the previous month in Thai e-waste workers compared to controls [ 27 ] (Table 8 ).

Armah et al. used questionnaires to survey resident e-waste workers, resident non-e-waste workers and as controls - non-resident non-e-waste workers. Resident e-waste and non-e-waste-workers reported eye problems, skin burns, and respiratory problems more frequently compared to the control group. The residential-occupational status of was identified to be a significant predictor of the occurrence of eye problems, skin burns and respiratory problems, for which resident EWWs presented the highest risk [ 23 ] (Table 8 ).

The association between biomarker levels and health indicators, such as symptom prevalence or odds for poorer general health was studied by Seith et al., where Urinary nickel and lead in blood showed a significantly increased risk for any symptoms [ 37 ] (Table 8 ).

Risk of Bias

A high risk of selection bias was found in our bias assessment in 24 of the 26 included studies, as mainly no detailed information on population recruitment was reported [ 18 , 19 , 20 , 21 , 22 , 23 , 24 , 25 , 26 , 27 , 28 , 29 , 30 , 31 , 32 , 35 , 36 , 37 , 38 , 39 , 40 , 41 , 42 , 43 ] (Table 9 ). Concerning internal validity, a high risk of bias was detected in 12–15% of all included studies [ 18 , 19 , 20 , 21 , 27 , 32 ] and a possible detection bias was assessed in 19% of the included studies [ 19 , 20 , 21 , 23 , 36 ]. Overall, the risk was considered low in all studies [ 18 , 19 , 20 , 21 , 22 , 23 , 24 , 25 , 26 , 27 , 28 , 29 , 30 , 31 , 32 , 33 , 34 , 35 , 36 , 37 , 38 , 39 , 40 , 41 , 42 , 43 ] in terms of performance bias, attrition bias and reporting bias, which can be considered as a strength. An overall risk of bias assessment can be found in the supplemental section (S 3 ).

To our best knowledge, this is the first systematic review of only direct occupational-related health effects in e-waste workers in the informal electronic waste recycling sector.

There is no doubt that the rudimentary way of recycling in the informal sector is causing risk to the human health [ 3 , 13 ]. Various studies have repeatedly shown contaminations of local residents and e-waste workers at these sides with toxic metals, dioxins, and furans, PCBs, polyaromatic hydrocarbons (PAHs), per- and polyfluoroalkyl substances (PFAS), particulate matter, other air pollutants, phthalates or chemicals [ 30 , 44 , 45 ]. Even the soil in e-waste dismantling areas is heavily polluted from e-waste recycling activities [ 46 ]. Air, water, sediment and wildlife are highly contaminated with chemicals, toxic compounds and heavy metals [ 46 , 47 ] like lead, cadmium and nickel, which are known to be neurotoxic, nephrotoxic, immunotoxin, carcinogen and genotoxic in humans [ 8 , 11 , 48 ].

The only included longitudinal study, in our systematic review covered a study period of 1.5 years [ 18 ]. Here, lung function parameters were described to be significantly lower, while the tables the authors referred to were missing in the supplementals. However, a clinically relevant pulmonary obstruction could not be derived from that study which might be due to the short observation period and the low participation rates, as mentioned before.

Longitudinal studies aiming to record organ malfunctions (e.g. progressive lung diseases) as well as symptom development and diseases with long latency periods, such as cancer are necessary. This would also be essential for the depiction of health effects of a mixed contamination with carcinogenic substances. So far, there has been a complete lack of studies on this, even though a strong biological plausibility of an association between work in the e-waste sector and health impairments urgently requires such research. Up until now, most studies have also failed to differentiate between the different work tasks in the informal sector, even though ‘job category’ was found to be a statistically significant risk factor [ 36 ]. Ideally, a study population should therefore be divided into several groups to prevent falsification of the measurements, determine the respective workload and hazards of the different exposures in order to implement necessary safety measures.

Since e-waste is mostly informally, unsafely and illegally recycled, with little or no attention paid to health protection and proper training, e-waste recycling workers do face a high risk of work-related injuries [ 1 , 10 , 11 ]. EWWs further reported significantly more symptoms in general [ 23 , 27 ], such as cough, chest pain, difficulty breathing, abnormal heartbeat, or dizziness [ 21 , 23 , 25 , 27 , 30 , 31 , 34 , 37 , 40 ]. However, these symptoms are largely unspecific and can be caused by a wide range of diseases, circumstances, or pre-existing conditions as well as the challenging environment the workers’ are faced with. Although it is not possible to establish a causal relationship, but an association to working in the e-waste sector and impaired workers’ health is likely.

It must be considered that the low safety standards and hardly any knowledge of hazardous substances as well as little to no use of personal protective equipment (PPE) can lead to a significant likelihood of work-related impairments in the informal e-waste business in low- or middle-income countries [ 7 ]. Medical care is often only partially accessible to workers, in particular when it comes to occupational health. Therefore, it can be assumed that both occupational and non-occupational disorders receive inadequate medical attention [ 8 , 49 , 50 ]. Several authors therefore point to the need for occupational health measures and risk reduction through improved working practices, even though no political recommendations were made [ 18 , 31 , 38 , 39 , 40 ].

The control of transboundary movements of hazardous waste and its disposal is regulated through international agreements such as the Basel Convention of 1989 and national laws like the Resource Conservation and Recovery Act in the US. The Basel Convention, which has 182 countries and the European Union as parties, prohibits the export of e-waste without the consent of the exporting, transit and importing countries, especially if environmentally safe processing is not ensured in the importing country. However, it allows the export of e-waste for “ recycling “, which often results in misuse and illegal export. Currently, less than 50% of the contracting parties voluntarily report on their national e-waste management situation. Policy measures at national and international level are needed to improve the management of e-waste. This includes the increased enforcement of existing laws, the extension of producer responsibility (EPR) and the promotion of recycling processes [ 8 , 12 , 51 ]. For example, the formalization of e-waste recycling with the implementation of laws and regulations with focus on occupational health and safety might have a big impact on the worker’s health including measures such as proper training, technical and organizational measures as well as the use of personal protection equipment.

The Solving the E-waste Problem (StEP) initiative has developed guiding principles for the effective management of e-waste, including a clear legal framework and the extension of producer responsibility regarding financing collection and recycling, as well as the promotion of investments in recycling infrastructure [ 4 , 52 ]. Better equipped border and harbor officials to combat the illegal trade in e-waste and stricter penalties for illegal exports are also important to ensure deterrence [ 4 , 52 ]. A more sustainable management of e-waste can be achieved through a collective approach and the consistent implementation of these measures. Making users and manufacturers aware of the consequences of dealing with e-waste is essential [ 3 , 53 ].

General procedure/ methodology

As most of the included studies were retrospective and cross-sectional [ 19 , 20 , 21 , 22 , 23 , 24 , 25 , 26 , 27 , 28 , 29 , 30 , 31 , 32 , 35 , 36 , 37 , 38 , 39 , 40 , 41 , 42 , 43 ], causal relations could only be derived for a limited number of symptoms and diseases, such as injuries or skin problems. Only one study had a longitudinal study design, with an observation period of less than 2 years [ 18 ]. Therefore, also here, any reliable statements on causality could not be given.

The presence of a control group was handled very differently among the included studies, while nine studies lacked a control group [ 22 , 24 , 25 , 26 , 35 , 36 , 37 , 42 , 43 ]. In addition, the composition of the control groups was very heterogeneous. Two studies used indirectly exposed participants as controls (e.g. residents/bystanders from the same area) [ 27 , 31 ]. Another study used workers from the formal e-waste recycling sector as control [ 40 ]. The majority of the included studies had non-exposed controls (e.g. participants from another area with no known e-waste exposure) [ 18 , 19 , 20 , 21 , 23 , 28 , 29 , 30 , 32 , 33 , 39 , 41 ].

The methods used for data collecting such as blood, urine or semen samples, lung function and sound measurements, as well as the variance in diagnostic assessment and criteria of the examinations, for example frequencies asked in surveys or differing symptoms. Therefore, a comparison between all studies was only possible to a limited extend.

Specific procedure/methodology

In some studies, the data described in the text were not verifiable because the tables referred to could not be found [ 18 ]. In other studies, contradictory data were described or not all required information was provided such as the specific n was not applicable and could not be determined with the given data [ 23 ]. Occasionally the n was reported differently [ 18 , 35 , 37 ] or data did not sum up to 100% [ 23 ]. In some cases, there was no information on the time of data collection or participant recruitment [ 38 , 41 ] and partly it was hard to identify if the work area is considerable as formal or informal [ 33 ]. In some cases biomarker levels were described to be consistently associated but did not prove to be significant [ 37 ].

This systematic review aimed to specifically analyze direct work-related health effects in informal e-waste workers caused by their work. However, due to inconsistent findings, weak associations or poor study quality, it has rarely been possible to establish a causal relationship between informal e-waste work and health effects. Only disorders of the musculoskeletal system and the work-related injuries could be directly attributed to the work in the informal e-waste recycling sector, as Issah et al. also described for the African continent [ 54 ]. Besides recycling related health effects, a challenge remains the sufficient recycling of rare elements what is so far not properly carried out in the informal sector. Of particular concern, however, is the lack of prospective longitudinal studies with sufficiently large study populations in this sector. These are urgently needed to assess adverse health effects and to capture diseases with long latency periods. In addition, a collective national and international political focus on e-waste disposal is needed and a formalization of the sector must be pursued. Occupational health and safety needs to be educated, implemented, and supported.

Availability of data and materials

The datasets used and/or analysed during the current study are available from the corresponding author on reasonable request.

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Acknowledgements

We would like to thank all the authors whose studies we included in this review and who conducted their research in the informal e-waste sector despite the difficult conditions.

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Elaboration of research question: B.E. and A.K.; Study protocol - original draft: B.E.; Study protocol - review and editing: B.E. and A.K.; Literature search: B.E.; Screening of results: B.E. and A.K.; Data extraction and bias assessment - original draft: B.E.; Data extraction and bias assessment - review and editing: B.E. and A.K.; Manuscript - original draft: B.E.; Manuscript - review and editing: B.E. and A.K. All authors have read and agree with the published version of the manuscript.

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Andrea Kaifie received funding in previous studies concerning informal e-waste recycling from the GIZ (Deutsche Gesellschaft für Internationale Zusammenarbeit). Bela Eckhardt declares no conflict of interest.

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Supplementary materials S1 Detailed health outcome table; S2: Overall bias risk assessment table; S3: Search Term

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Eckhardt, B., Kaifie, A. Bridging the knowledge gap! Health outcomes in informal e-waste workers. J Occup Med Toxicol 19 , 11 (2024). https://doi.org/10.1186/s12995-024-00410-z

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Research Frameworks: Critical Components for Reporting Qualitative Health Care Research

Qualitative health care research can provide insights into health care practices that quantitative studies cannot. However, the potential of qualitative research to improve health care is undermined by reporting that does not explain or justify the research questions and design. The vital role of research frameworks for designing and conducting quality research is widely accepted, but despite many articles and books on the topic, confusion persists about what constitutes an adequate underpinning framework, what to call it, and how to use one. This editorial clarifies some of the terminology and reinforces why research frameworks are essential for good-quality reporting of all research, especially qualitative research.

Qualitative research provides valuable insights into health care interactions and decision-making processes – for example, why and how a clinician may ignore prevailing evidence and continue making clinical decisions the way they always have. 1 The perception of qualitative health care research has improved since a 2016 article by Greenhalgh et al. highlighted the higher contributions and citation rates of qualitative research than those of contemporaneous quantitative research. 2 The Greenhalgh et al. article was subsequently supported by an open letter from 76 senior academics spanning 11 countries to the editors of the British Medical Journal . 3 Despite greater recognition and acceptance, qualitative research continues to have an “uneasy relationship with theory,” 4 which contributes to poor reporting.

As an editor for the Journal of Patient-Centered Research and Reviews , as well as Human Resources for Health , I have seen several exemplary qualitative articles with clear and coherent reporting. On the other hand, I have often been concerned by a lack of rigorous reporting, which may reflect and reinforce the outdated perception of qualitative research as the “soft option.” 5 Qualitative research is more than conducting a few semi-structured interviews, transcribing the audio recordings verbatim, coding the transcripts, and developing and reporting themes, including a few quotes. Qualitative research that benefits health care is time-consuming and labor-intensive, requires robust design, and is rooted in theory, along with comprehensive reporting. 6

What Is “Theory”?

So fundamental is theory to qualitative research that I initially toyed with titling this editorial, “ Theory: the missing link in qualitative health care research articles ,” before deeming that focus too broad. As far back as 1967, Merton 6 warned that “the word theory threatens to become meaningless.” While it cannot be overstated that “atheoretical” studies lack the underlying logic that justifies researchers’ design choices, the word theory is so overused that it is difficult to understand what constitutes an adequate theoretical foundation and what to call it.

Theory, as used in the term theoretical foundation , refers to the existing body of knowledge. 7 , 8 The existing body of knowledge consists of more than formal theories , with their explanatory and predictive characteristics, so theory implies more than just theories . Box 1 9 – 12 defines the “building blocks of formal theories.” 9 Theorizing or theory-building starts with concepts at the most concrete, experiential level, becoming progressively more abstract until a higher-level theory is developed that explains the relationships between the building blocks. 9 Grand theories are broad, representing the most abstract level of theorizing. Middle-range and explanatory theories are progressively less abstract, more specific to particular phenomena or cases (middle-range) or variables (explanatory), and testable.

The Building Blocks of Formal Theories 9

The importance of research frameworks.

Researchers may draw on several elements to frame their research. Generally, a framework is regarded as “a set of ideas that you use when you are forming your decisions and judgements” 13 or “a system of rules, ideas, or beliefs that is used to plan or decide something.” 14 Research frameworks may consist of a single formal theory or part thereof, any combination of several theories or relevant constructs from different theories, models (as simplified representations of formal theories), concepts from the literature and researchers’ experiences.

Although Merriam 15 was of the view that every study has a framework, whether explicit or not, there are advantages to using an explicit framework. Research frameworks map “the territory being investigated,” 8 thus helping researchers to be explicit about what informed their research design, from developing research questions and choosing appropriate methods to data analysis and interpretation. Using a framework makes research findings more meaningful 12 and promotes generalizability by situating the study and interpreting data in more general terms than the study itself. 16

Theoretical and Conceptual Frameworks

The variation in how the terms theoretical and conceptual frameworks are used may be confusing. Some researchers refer to only theoretical frameworks 17 , 18 or conceptual frameworks, 19 – 21 while others use the terms interchangeably. 7 Other researchers distinguish between the two. For example, Miles, Huberman & Saldana 8 see theoretical frameworks as based on formal theories and conceptual frameworks derived inductively from locally relevant concepts and variables, although they may include theoretical aspects. Conversely, some researchers believe that theoretical frameworks include formal theories and concepts. 18 Others argue that any differences between the two types of frameworks are semantic and, instead, emphasize using a research framework to provide coherence across the research questions, methods and interpretation of the results, irrespective of what that framework is called.

Like Ravitch and Riggan, 22 I regard conceptual frameworks (CFs) as the broader term. Including researchers’ perspectives and experiences in CFs provides valuable sources of originality. Novel perspectives guard against research repeating what has already been stated. 23 The term theoretical framework (TF) may be appropriate where formal published and identifiable theories or parts of such theories are used. 24 However, existing formal theories alone may not provide the current state of relevant concepts essential to understanding the motivation for and logic underlying a study. Some researchers may argue that relevant concepts may be covered in the literature review, but what is the point of literature reviews and prior findings unless authors connect them to the research questions and design? Indeed, Sutton & Straw 25 exclude literature reviews and lists of prior findings as an adequate foundation for a study, along with individual lists of variables or constructs (even when the constructs are defined), predictions or hypotheses, and diagrams that do not propose relationships. One or more of these aspects could be used in a research framework (eg, in a TF), and the literature review could (and should) focus on the theories or parts of theories (constructs), offer some critique of the theory and point out how they intend to use the theory. This would be more meaningful than merely describing the theory as the “background” to the study, without explicitly stating why and how it is being used. Similarly, a CF may include a discussion of the theories being used (basically, a TF) and a literature review of the current understanding of any relevant concepts that are not regarded as formal theory.

It may be helpful for authors to specify whether they are using a theoretical or a conceptual framework, but more importantly, authors should make explicit how they constructed and used their research framework. Some studies start with research frameworks of one type and end up with another type, 8 , 22 underscoring the need for authors to clarify the type of framework used and how it informed their research. Accepting the sheer complexity surrounding research frameworks and lamenting the difficulty of reducing the confusion around these terms, Box 2 26 – 31 and Box 3 offer examples highlighting the fundamental elements of theoretical and conceptual frameworks while acknowledging that they share a common purpose.

Examples of How Theoretical Frameworks May Be Used

Examples of how conceptual frameworks may be used, misconceptions about qualitative research.

Qualitative research’s “uneasy relationship with theory” 4 may be due to several misconceptions. One possible misconception is that qualitative research aims to build theory and thus does not need theoretical grounding. The reality is that all qualitative research methods, not just Grounded Theory studies focused on theory building, may lead to theory construction. 16 Similarly, all types of qualitative research, including Grounded Theory studies, should be guided by research frameworks. 16

Not using a research framework may also be due to misconceptions that qualitative research aims to understand people’s perspectives and experiences without examining them from a particular theoretical perspective or that theoretical foundations may influence researchers’ interpretations of participants’ meanings. In fact, in the same way that participants’ meanings vary, qualitative researchers’ interpretations (as opposed to descriptions) of participants’ meaning-making will differ. 32 , 33 Research frameworks thus provide a frame of reference for “making sense of the data.” 34

Studies informed by well-defined research frameworks can make a world of difference in alleviating misconceptions. Good qualitative reporting requires research frameworks that make explicit the combination of relevant theories, theoretical constructs and concepts that will permeate every aspect of the research. Irrespective of the term used, research frameworks are critical components of reporting not only qualitative but also all types of research.

Acknowledgments

In memory of Martie Sanders: supervisor, mentor, and colleague. My deepest gratitude for your unfailing support and guidance. I feel your loss.

Conflicts of Interest: None.

Research Frameworks: Critical Components for Reporting Qualitative Health Care Research

Affiliation.

• 1 Centre for Health Science Education, Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, South Africa.
• PMID: 38596348
• PMCID: PMC11000705
• DOI: 10.17294/2330-0698.2068

Qualitative health care research can provide insights into health care practices that quantitative studies cannot. However, the potential of qualitative research to improve health care is undermined by reporting that does not explain or justify the research questions and design. The vital role of research frameworks for designing and conducting quality research is widely accepted, but despite many articles and books on the topic, confusion persists about what constitutes an adequate underpinning framework, what to call it, and how to use one. This editorial clarifies some of the terminology and reinforces why research frameworks are essential for good-quality reporting of all research, especially qualitative research.

Keywords: conceptual frameworks; health care; qualitative research; research frameworks; theoretical frameworks; theory.

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