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• Published: 07 February 2023

A novel approach to frontline health worker support: a case study in increasing social power among private, fee-for-service birthing attendants in rural Bangladesh

• Dora Curry   ORCID: orcid.org/0000-0002-9418-1548 1 , 2 ,
• Md. Ahsanul Islam 1 ,
• Bidhan Krishna Sarker 3 ,
• Anne Laterra 1 &
• Ikhtiar Khandaker 1  

Human Resources for Health volume  21 , Article number:  7 ( 2023 ) Cite this article

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Expanding the health workforce to increase the availability of skilled birth attendants (SBAs) presents an opportunity to expand the power and well-being of frontline health workers. The role of the SBA holds enormous potential to transform the relationship between women, birthing caregivers, and the broader health care delivery system. This paper will present a novel approach to the community-based skilled birth attendant (SBA) role, the Skilled Health Entrepreneur (SHE) program implemented in rural Sylhet District, Bangladesh.

Case presentation

The SHE model developed a public–private approach to developing and supporting a cadre of SBAs. The program focused on economic empowerment, skills building, and formal linkage to the health system for self-employed SBAs among women residents. The SHEs comprise a cadre of frontline health workers in remote, underserved areas with a stable strategy to earn adequate income and are likely to remain in practice in the area. The program design included capacity-building for the SHEs covering traditional techno-managerial training and supervision in programmatic skills and for developing their entrepreneurial skills, professional confidence, and individual decision-making. The program supported women from the community who were social peers of their clients and long-term residents of the community in becoming recognized, respected health workers linked to the public system and securing their livelihood while improving quality and access to maternal health services. This paper will describe the SHE program's design elements to enhance SHE empowerment in the context of discourse on social power and FLHWs.

The SHE model successfully established a private SBA cadre that improved birth outcomes and enhanced their social power and technical skills in challenging settings through the mainstream health system. Strengthening the agency, voice, and well-being of the SHEs has transformative potential. Designing SBA interventions that increase their power in their social context could expand their economic independence and reinforce positive gender and power norms in the community, addressing long-standing issues of poor remuneration, overburdened workloads, and poor retention. Witnessing the introduction of peer or near-peer women with well-respected, well-compensated roles among their neighbors can significantly expand the effectiveness of frontline health workers and offer a model for other women in their own lives.

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The Sustainable Development Goals (SDG) for 2030 target reducing the Maternal Mortality Ratio to 70 maternal deaths per 100,000 live births. Increased availability of skilled birth attendants (SBAs) is well established as one essential ingredient of reducing maternal mortality and is a primary indicator for documenting progress in this area [ 1 , 2 , 3 ]. Within a system-wide approach to improving maternal health outcomes, universal availability of skilled birthing care is one critical element of achieving progress on this crucial SDG [ 5 , 6 , 7 ]. The WHO Global Strategy for Human Resources for Health: Workforce 2030 calls on countries to increase investment in frontline health workers and explore new ways to optimize health service expertise [ 8 ].

Expanding the health workforce to increase the availability of SBAs presents an opportunity. The role of the SBA holds enormous potential to transform the relationship between women, birthing caregivers, and the broader health care delivery system. This paper will focus on the community-based skilled birth attendant (SBA) role and its transformative potential, using a novel approach to SBAs, implemented in rural Sylhet District, Bangladesh, as an illustrative example. The introduction of diverse processes, like this one, to increase the uptake of basic skilled birthing care can play an essential role in improving coverage with skilled birthing attendants. In addition, insights from such new approaches to financing and supporting frontline health workers can contribute to health workforce expansion and quality improvement in health areas beyond safe delivery.

The Skilled Health Entrepreneur (SHE) model developed a public–private approach to developing and training a cadre of SBAs. The program focused on economic empowerment, skills building, and formal linkage to the health system for self-employed SBAs among women residents. This model shifts the view of community-based birth attendants from one of a substandard, stopgap force extender to one of a unique class of skilled providers. The program invests the SHEs with income, autonomy, and external professional recognition. Creating a cadre of providers of similar socioeconomic status and culture to clients enhances the value of the SBA and her services in her clients' eyes.

The Sumanganj District of Bangladesh provides a valuable context to explore these issues in several ways. Not only does the area experience a critical gap in the availability of health care service providers, but a market also exists for fee-for-service health care, as community members are already accustomed to seeking care or unreliable quality from often unskilled private providers due to the gap in the availability of providers in public facilities. In addition, an established cadre of community-based skilled birth attendants already existed, but was underutilized due mainly to inadequate supervision and low community awareness of their capabilities. Finally, women faced barriers to seeking delivery services at facilities due to social norms and religious practices [ 9 ].

Other models exist with some similarities. For example, this model is similar to the Shasthya Shebika (SS) approach. The SHE and the SSs are selected from the community, provided training and supervision, provided community-based services, and rely on their activities to earn compensation. The distinctive element of the SHE approach is that the SHEs charge for their services directly on a fee-for-service basis. SSs receive a financial incentive from relatively small mark-ups of resale health-related products provided or subsidized by a sponsoring organization such as an INGO or the MOH. This feature also sets the SHE model apart from similar models in other countries, like kaders’ posyandu in Indonesia or the LiveWell model in Zambia [ 4 ].

This paper will first present an overview of factors influencing the uptake of skilled birthing care and then describe the SHE model and its transformational potential. The SHE model comprises a cadre of frontline health workers in remote, underserved areas with a stable strategy to earn adequate income and are likely to remain in practice in the area. They can provide high-quality basic clinical skills and access to higher care. The community and the health system recognize them as legitimate. In addition, they are female, come from the same geographical, and cultural background as their clients, and are closer to their clients' socioeconomic peers than most other health workers.

These features of the SHE model can potentially increase clients' uptake of skilled birthing services and contribute positively to social and gender dynamics. Selecting SBAs from among women within traditionally underrepresented and marginalized communities ensures that they have networks, social connections, capital, and a desire to continue building a life there. Designing SBA interventions that increase their power in their social context could expand their economic independence and reinforce positive gender and power norms in the community, addressing long-standing issues of poor remuneration, overburdened workloads, and poor retention.

These shifts could also enhance the perception of quality and accessibility among clients and contribute more to women’s agency. This model amplifies and gives greater weight to client perception and builds on frontline providers’ and clients’ agency, making it more robust in challenging settings, more acceptable to clients, and more sustainable than other options.

This paper is a descriptive exercise depicting a novel intervention in detail. A selective review of relevant literature provides an overview of maternal health strategies to improve skilled birth attendant availability and skill. The literature review included both peer-reviewed publications and "grey" literature. The project description draws on an in-depth desk review of project documentation. The desk review covered the project proposal, routine project reporting covering supportive supervision findings, training materials, activity logs, and internal assessments; midline and end-line reports; and journal articles published on program data. Program monitoring and evaluation data included in the review covered project outputs such as health services delivered, commodities sold, community events conducted, and project outcomes such as the percentage of the coverage area accessing critical maternal and child health services.

International calls for more significant investment in skilled birthing care underestimate the complexity of women's needs and preferences and providers' needs and preferences [ 7 ]. To maximize the impact of such investments, health worker support interventions must offer a specific pathway to address the unique challenges of a range of women's preferences [ 11 ]. Women's preference for birthing care that is convenient, respectful, or culturally congruent may overshadow clinical quality, as defined by technical experts, in their care-seeking.

Afulani and Moyer proposed a framework that includes perceived need, accessibility, and quality as three factors affecting the uptake of skilled birthing care [ 12 ]. The critical insight their analysis contributes model is the influence of client perception on their decisions about seeking services. Distinguishing between perceived quality and accessibility, on the one hand, and clinical quality and distance to care, on the other, highlights the connection between client experience and whether a woman chooses skilled birthing care or not. Many factors affect perceived and actual quality and accessibility, such as service cost, quality monitoring, and the governance environment for financing and regulation. This discussion will use the concepts of perceived accessibility and quality, as distinct from objectively measured accessibility and quality, as a framework to consider the influence of the social context for the SHE role and its influence on women's uptake of services and gender and power dynamics.

Perceived accessibility

In Bangladesh and globally, rural areas face a more limited supply of providers and more significant challenges to ensuring high-quality, respectful care among providers [ 5 ]. The difficulty in improving provider coverage in underserved areas and the prevalence of disrespectful care is well-documented and persistent [ 11 , 13 , 14 ].

The considerable body of evidence on frontline health workers (FLHWs) demonstrates that fundamental issues like adequate, regular pay and safe working conditions are essential prerequisites to maintaining a successful frontline cadre of health workers [ 15 ]. (The term frontline health worker encompasses community skilled birth attendants, midwives, nurses, and physicians) [ 15 ]. Recruitment and retention of midwives, nurses, and physicians through financial incentives and other added compensation are common strategies for a geographic redistribution of skilled providers [ 1 , 16 ]. Unfortunately, these efforts have failed to identify a stable solution to the adequate supply of providers in underserved areas [ 17 ].

While additional factors undoubtedly influence the difficulty of attracting providers in remote areas, the inability to earn an adequate, stable income is critical [ 18 , 19 , 20 ]. Solutions that rely on unpaid or underpaid lay health workers in the community are not viable [ 7 ] and are not sure to improve perceived accessibility.

Perceived quality

The second mediating pathway considered here—perceived quality—is even more complex in its relationship to the uptake of services; the WHO acknowledged in 2014 guidelines on preventing pregnancy-related morbidity and mortality that respectful care still defies definition [ 21 ]. Researchers have identified involving women in their care and preparing a supportive environment that supports the woman's choice of companionship as a crucial element of respect [ 22 ]. In addition to being a fundamental right, respectful care significantly affects whether and where women seek care [ 23 ].

Factors like distance, lack of ancillary services, and desire for a cesarian section affect women's choice to give birth outside a facility. Avoidance of care that does not meet the standards for respectful care is also a significant driver for opting for non-facility deliveries [ 21 , 24 ]. In response to disrespectful care, women frequently seek care from traditional birth attendants and deliver at home [ 25 ].

Simply ensuring an adequate number of providers practicing in underserved areas will not adequately address the challenge of ensuring equitable access to maternity care that is both skilled and respectful [ 13 ]. Underlying factors increasing the likelihood of receiving disrespectful maternity care include caste, class, race discrimination, harmful gender norms, and social status. Strategies that incentivize providers from elsewhere to practice in underserved areas may increase the availability of providers. However, they may not increase perceived accessibility or respectfulness of care if newly recruited providers are more urban, of higher social status, or of different ethnic or language groups than their clients, which is likely.

Approaches to improving perceived quality and accessibility

Approaches to improving quality in ways valued by women are a critical need. For example, an intervention in Afghanistan that prioritized cultural compatibility in underserved areas by working with regional midwifery training centers found high satisfaction among midwives and their clients [ 27 ]. They may enhance the attractiveness of the service to individual clients by marrying clinically high-quality care with respectful, culturally congruent care.

An alternative approach must also establish a mechanism to ensure sustainable financing to ensure adequate provider income in underserved areas and facilitate a respectful relationship between providers and clients. One widely employed strategy to address the need to pay FLHW is to rely on a cadre of "volunteer" community-based providers. A risk in designing programming to extend access to health services is that the FLHW/CHW role may shift responsibility, work burden, and even financial contributions onto FLHWs/CHWs as individuals. For example, Schaaf et al. [ 28 ] observe that targeted vertical programs relied heavily on volunteer or minimally compensated community health workers to extend the program's reach. Closser and Maes discuss the "appropriation" of the role of the CHW. In these situations, the scope of duties and time commitment demanded of "volunteer" CHWs far exceed the typical expectations of a volunteer role [ 29 ]. Over-reliance on these predominantly female, lower-status cadres can decrease their effectiveness and undermine their impact among their social peers in the community as models of women respected and compensated for critical health services.

Skilled Health Entrepreneurs: a new approach

The Skilled Health Entrepreneurs Footnote 1 (SHE) model emerged from a collaboration between CARE International in Bangladesh, Bangladesh's Ministry of Health, and other partners. This coalition proposed creating a sustainable system to ensure SBA services are available in the remote, underserved rural Sunamganj District in the Sylhet Division, the northeast region of Bangladesh. Skilled providers were scarce in government facilities for at least two significant reasons. The cost of staffing many small clinics in remote locations can pose a substantial obstacle to the health system because of the high per-beneficiary cost for staffing in sparsely populated areas [ 30 ]. The government facilities struggled to retain those health workers they successfully recruited in the few rural facilities they could support [ 30 ]. Residents were accustomed to seeking delivery care from untrained private birth attendants [ 31 ]. The robust market for private traditional birthing care signals a gap in publicly provided services, in quality, quantity, or both. While the care provided by traditional birth attendants might not have met clinical quality standards, it was providing value to clients, potentially through convenience and culturally appropriate, respectful care.

The SHE model proposed increasing the availability of high-quality care and stabilizing access to care from SHEs by selecting residents of the area. As community members, they were less likely to leave the site and more motivated to improve health outcomes for those giving birth in their areas. With support from program staff, they also negotiated a standardized, sliding-scale fee schedule that allows them to continue generating revenue independently while ensuring low-income women can access their services [ 5 ].

The program design included measures to increase the capacities of the SHEs in ways beyond the traditional techno-managerial training and supervision in technical skills, such as growing and controlling their earnings and expanding their professional skills. The program intended to support women from the community, as social peers of clients and long-term residents, in becoming recognized, respected health workers linked to the public system while protecting their livelihood and improving quality and access to maternal health services [ 32 ] This paper will describe the SHE program's design elements to enhance SHE empowerment in the academic literature on social power and FLHWs.

Hossain, et al. [ 5 ] described the Skilled Health Entrepreneur program. The project's purpose was to provide clients with the option of a maternal health service provider that meets clients' needs and preferences. Women in the community preferred traditional birth attendants because they were available outside of business hours, accepted non-monetary payments, and shared social norms and beliefs [ 5 ]. The SHE program provided training to fellow community members so that women could receive services from their trusted, culturally congruent providers while ensuring that services offered were safe, high-quality, and linked to referrals for complications.

The project included five central interventions: selection and training of private birth attendants, social entrepreneurship capacity building, community engagement to establish the new cadre in the community, linkages to quality monitoring and referral facilities, and mechanisms to bolster the community's financial support of the program's activities. The program selected participants by inviting applications and conducting interviews and written exams. Women aged 25 to 40 years with at least ten years of schooling were eligible to apply. Over the 5-year life of the project, 319 completed the training.

The project delivered 3 months of training in health service and promotion. The clinical and health promotion training prepared SHEs to support a comprehensive maternal and child package, including antenatal care, assistance in uncomplicated deliveries, postnatal and newborn care, referral for complications, family planning counseling, short-term family planning method provision, and referral. The program used MOH training materials and trainers based on WHO standards. The program also linked SHEs with community support groups, community health workers, government health facilities, and supervisors. See Hossain et al. [ 5 ] for more details on the program in general. Once SHEs were prepared to offer services, the program provided ongoing supervision and professional development, including mobile skill labs and advancement opportunities to serve as trainers for incoming new SHEs.

The program also coordinated an alignment between municipal authorities, the health department, and the SHEs. As a result of CARE's coordination, the Health Department provided SHEs with an ongoing supply of health commodities, such as iron folate tablets, soap, and misoprostol, and refresher training. The SHEs charged clients on a sliding scale negotiated by the local government and community representatives. Prices paid were independently monitored periodically. Program staff collaborated with local leaders to explore mechanisms to extend care to the lowest wealth quintile care free of charge.

Over the project's life, SHEs accomplished 47,123 skilled deliveries and dispensed 2.7 million folic acid tablets. As of the end of the program, the median monthly earnings of the SHEs was 5000 BDT (67 USD), compared to 1500 BDT (20 USD) at the beginning of the program. SHEs are formally linked with 136 community clinics and 29 union councils on health and family welfare [ 33 ]. A mid-term analysis found that women in the coverage area were more than twice as likely to have delivered with a skilled birth attendant present at their most recent childbirth than at the beginning of the program [ 5 ]. The end-line assessment conducted in 2018 demonstrated significant achievements. The percentage of women using a skilled attendant during birth increased from 13.4 to 37.4% in the intervention area compared to 21.4% to 35.8% in a comparison district. Neonatal, infant, and under-five mortality rates all showed similar improvement [ 33 ] (see Table 1 ).

Compensation: financial and marketing skills building

One of the intervention arms most directly related to an increase in SHEs' social power focused on building their capacity to earn an adequate income. SHEs developed two potential sources of revenue: direct fee-for-service charges for maternal health services and the sale of health-related products. SHE revenue was not the sole source of household income, however. According to the program’s intake questionnaire administered to SHEs, most SHEs have some additional household income from another adult earner, and some may have had other sources of revenue as individuals unrelated to SHE duties. In addition, SHEs may compete with other providers of similar goods and services. Including income as an element of SHE empowerment should not be considered a comprehensive economic analysis but rather one of the multiple components influencing SHEs' social power (Fig. 1 ).

Mediating pathways in uptake of skilled birthing care

The program facilitated a market analysis process with the SHEs. The intervention included a 2-day social entrepreneurship capacity-building workshop drawing on a market analysis of the local market and developing business plans. The workshop covered targeting their service offerings and minimizing conflict with untrained traditional birth attendants. The SHEs received coaching from facilitators skilled in entrepreneurship to determine their potential clients' market size and characteristics. They developed individual business plans targeted to their communities, including outreach to potential clients. The project also conducted promotional and marketing activities ranging from health awareness days to stakeholder meetings to print, video, and media outreach. Another program element connected the SHEs to a supply chain of saleable commodities, such as non-prescription medicine, nutritional supplements, and baby care articles, at wholesale prices. The SHEs then resold these items at a small profit [ 30 ].

Professional engagement and community recognition

Other project elements contributed to SHEs' agency and external recognition by enhancing their recognition as valuable contributors to the community by authorities outside their homes. CARE's training to the SHEs earned them accreditation by the Bangladesh Nursing Council as a community skilled birth attendant, a professionally recognized designation in Bangladesh [ 32 ]. The professional development and skills-building component included coaching by nurses and physicians and organized rotations for the SHEs in healthcare facilities. These inputs conferred legitimacy and status on previously marginalized traditional providers.

Also, the project facilitated negotiation among the SHEs, the local municipal authorities, and the closest primary healthcare facility to establish a formally recognized role for the SHEs. This process set the sliding-scale fee structure discussed above. These negotiations afforded the SHEs recognition as accredited community midwives and secured support from local and neighborhood leaders to provide safe, clean space to perform services and accompaniment on travel to remote locations for home deliveries. The program developed a Memorandum of Understanding between the SHEs and the union parishads and negotiated specific budget line items in UP budgets to supervise the SHEs (These line items did not cover SHE remuneration.)

The formal recognition of their authority and value afforded them greater personal power in negotiating with family and community members about their mobility and control over resources. The provisions for their security removed the threat of violence, stigma, and harassment that could otherwise have accompanied their professional activities.

Agency: personal power to act

A third pillar of the program's approach to empowering SHEs was to build their sense of agency on an individual level. Program activities included group planning sessions among SHEs for the SHEs to engage with each other (As each SHE worked in a different neighborhood geographically, the risk of competition among SHEs was minimal). Also, program facilitators worked one-on-one with SHEs, identifying what changes could further develop their businesses [ 34 ]. For example, when a regular review revealed that one SHE was not earning as much revenue as targeted, program facilitators examined the factors affecting her ability to make money through her work. They found those factors to include a lack of family support and insecurity when visiting clients in remote locations. The action plan included family support for childcare, introductions to community members, and expanding the products she could sell to generate revenue. In the end, her revenue well exceeded her target [ 34 ].

Limitations

The primary limitation of this discussion is that it is a purely descriptive exercise. A deeper examination of the SHE program provides insight into where and how the SHE approach may be broadly relevant. However, the merit of the approach cannot be demonstrated without empirical data analysis. Further research should cover both the causal pathway and the ultimate outcomes of the model.

Also, context presents a dilemma in this approach. One of the keys to the success of the SHE model was its careful observation of the factors driving women's choices in obtaining birthing care in this setting. The participatory design process allowed for significant tailoring to the market forces and client preferences unique to Sylhet District in rural Bangladesh. Notably, birthing care from traditional birth attendants was in demand before the SHE program and was an essential prerequisite. This demand for birthing care may be necessary for this model to be helpful.

According to Renfrew, et al., any comprehensive solution to introducing and supporting an influential health worker cadre must include minimum educational requirements and processes to ensure training, licensure, and regulation and be systematically integrated into the health system [ 7 ]. The SHE program met those criteria and improved birth outcomes. The SHE successfully established a private SBA cadre that enhanced their social power and technical skills in settings challenging to access through the mainstream health system. The SHE model stands out from many adopted globally for this purpose, such as Ethiopia's Women's Development Army and Nepal's Female Community Health Volunteers [ 29 , 35 ]. The SHE model dedicates concerted efforts to enhance women's decision-making authority, status in their work lives, and economic independence.

Witter (2017) cite concrete measures to address gender barriers as an essential element of building a stable health workforce suited to meet the needs of vulnerable populations [ 36 ]. In the SHE program, recognizing the SHEs as sanctioned health service providers legitimizes their status in the community. As community members before receiving SHE training, the SHEs are more likely to be rural, less educated, of marginalized ethnic ups, and lower status than most mainstream service providers. The introduction of peer or near-peer women with well-respected, well-compensated roles among their neighbors may have a powerful effect on other women and offer a model for their lives in different fields.

Focusing on enhancing the SHEs’ agency, voice, and well-being is necessary for this transformative potential. Asking a traditional birth attendant to assume more work for little or no money may increase the burden of unpaid labor on her and also reinforce existing harmful power relations ( 28 ). Calling on CHWs to provide services with no guarantee of compensation and refer to facility-based care providers reinforces the notion that it is her feminine duty to care for her neighbors and is more naturally caring and motivated. The SHE model structurally counters those harmful notions. Instead, the SHE model reinforces the perception that the caretaking work, often performed unpaid, usually by women, is worthy of the respect and economic investment of the community.

The importance of class, caste, and race in these power relations also influences the SHE's role. SHEs are more likely to be of lower status on several criteria, such as wealth and education level, than female FLHWs with more training and authority, such as nurses and female physicians [ 37 ]. Part of the transformative power of a model like the SHEs is that they are women from the same community and background and have less elite status otherwise. Services offered at the site preferred by the client by a social near-peer coach in prioritizing client-centered care communicates a high value placed on the client's preferences [ 36 ].

The sustainability of such approaches is a crucial element of any potential for long-term success or expansion of the SHE model and similar interventions. The fundamental sustainability strategy rests on market forces. The SHEs’ ongoing presence depends on their continued ability to provide services and charge for them. The SHEs could continue earning a substantially increased income from their service provision by the end of the program. The program phased out any direct financial support to the SHEs well before the program concluded. Fundamentally the sustainability strategy is for the SHEs to continue to cost-recover for their services, whether from private clients or through reimbursement from public payers for those unable to pay.

The sustainability of additional support activities remains challenging in at least two ways. First, supervision and entrepreneurship support was provided by grant funding. Supportive supervision and in-service training would require additional approval and investment from health authorities or elsewhere. A combination of health and other agencies at multiple levels (municipal, district, and national) could provide the moderate additional oversight needed to assure quality at a much lower cost than alternatives like providing salary support to community-based SBAs or extending the availability of facility-based SBAs. Secondly, ensuring sustainable financial resources to ensure access to care for lower-income families is a critical challenge for the sustainability of this model. Municipal budgets and community savings groups contributed funding to allow the SHEs to cost-recover services provided to mothers unable to pay during the program. Still, those arrangements were difficult to formalize and vulnerable to changes in budget allocations. Allowing the SHEs to receive reimbursement for skilled delivery services provided outside the facility would be one option for ensuring sustainable financing for SBA services for lower-income clients.

Taken within the growing body of scholarly work demonstrating the potential benefit of supporting positive gender norms and power dynamics among frontline health workers, these findings suggest some recommendations for health service delivery policy and practice:

Support robust investment in financing mechanisms to ensure adequate financial compensation for community health workers, especially predominantly or exclusively female cadres.

Build meaningful commitment to including community-based FLHW cadre in decision-making and planning within the health system through binding agreements among government and private sector stakeholders at local, as well as district and national, levels.

Include support in addressing gender-related barriers to paid work among female frontline health workers in supervision protocols and intervention design (Such support may include items in the SHE approach like coaching in negotiating social norm barriers among families and training on professional business skills such as public speaking and financial management.)

In addition, an assessment of the SHEs' experience and assessing health outcomes and social relations in the broader community can provide insights into the social role she fills. Understanding the effect of the SHEs’ agency on the women in the communities they serve is vital for the effective implementation of recommendations in other contexts.

Building on these learnings and implementing these recommendations could contribute to expanding women’s access to safe, acceptable care and strengthening social norms supportive of women in influential, professional roles.

Availability of data and materials

N/A (No datasets were presented in this article.)

In the first phase of the project the SHEs were known as Private Community Skilled Birth Attendants (PCSBAs) and are mentioned in the cited project documentation interchangeably as SHEs and PCSBAs.

Abbreviations

• Frontline health workers

Skilled birth attendant

Skilled Health Entrepreneurs

Union Parishad

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Curry, D., Islam, M.A., Sarker, B.K. et al. A novel approach to frontline health worker support: a case study in increasing social power among private, fee-for-service birthing attendants in rural Bangladesh. Hum Resour Health 21 , 7 (2023). https://doi.org/10.1186/s12960-022-00773-6

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Leadership support as an influence on frontline healthcare employee retention in the washington metropolitan area (dmv).

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Fair, Tamika, "Leadership Support as an Influence on Frontline Healthcare Employee Retention in the Washington Metropolitan Area (DMV)" (2023). Doctoral Dissertations and Projects . 4621. https://digitalcommons.liberty.edu/doctoral/4621

The healthcare industry continues to lose its frontline healthcare employees monthly at unprecedented rates. In the healthcare sector, high staff turnover leads to poor patient care and loss of hospital revenues. The general problem addressed by this case study was how healthcare leadership’s lack of support for frontline hospital workers contributes to higher turnover rates, hurting the organizations’ productivity and patient care outcomes. The purpose of this qualitative case study was to add to the body of knowledge about healthcare leadership’s strategies to reduce frontline hospital workers’ high turnover rate affecting the healthcare industry in the DMV area. The study achieved this purpose by exploring how healthcare leaders engage and interact with frontline workers. The research also explored how well healthcare leaders are prepared and trained to address the challenge of high staff turnover. The researcher conducted a qualitative case study using semistructured interviews with 11 primary healthcare administrators in the DMV region to carry out the study. Based on the identified themes, the implications and strategies include investing in resources and leadership development to reduce employee turnover and fatigue. In addition, the results of this study indicate that additional resources and enhanced leadership strategies are required to reduce the turnover of frontline employees in the healthcare industry. To improve working conditions, healthcare organizations in the DMV region should also increase employee empowerment and cultivate organizational citizenship.

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• Published: 06 June 2024

Multi-stage optimization strategy based on contextual analysis to create M-health components for case management model in breast cancer transitional care: the CMBM study as an example

• Hong Chengang 1 ,
• Wang Liping 1 ,
• Wang Shujin 1 ,
• Chen Chen 1 ,
• Yang Jiayue 1 ,
• Lu Jingjing 1 ,
• Hua Shujie 1 ,
• Wu Jieming 1 ,
• Yao Liyan 1 ,
• Zeng Ni 1 ,
• Chu Jinhui 1 &
• Sun Jiaqi 1  

BMC Nursing volume  23 , Article number:  385 ( 2024 ) Cite this article

Metrics details

None of the early M-Health applications are designed for case management care services. This study aims to describe the process of developing a M-health component for the case management model in breast cancer transitional care and to highlight methods for solving the common obstacles faced during the application of M-health nursing service.

We followed a four-step process: (a) Forming a cross-functional interdisciplinary development team containing two sub-teams, one for content development and the other for software development. (b) Applying self-management theory as the theoretical framework to develop the M-health application, using contextual analysis to gain a comprehensive understanding of the case management needs of oncology nursing specialists and the supportive care needs of out-of-hospital breast cancer patients. We validated the preliminary concepts of the framework and functionality of the M-health application through multiple interdisciplinary team discussions. (c) Adopting a multi-stage optimization strategy consisting of three progressive stages: screening, refining, and confirmation to develop and continually improve the WeChat mini-programs. (d) Following the user-centered principle throughout the development process and involving oncology nursing specialists and breast cancer patients at every stage.

Through a continuous, iterative development process and rigorous testing, we have developed patient-end and nurse-end program for breast cancer case management. The patient-end program contains four functional modules: “Information”, “Interaction”, “Management”, and “My”, while the nurse-end program includes three functional modules: “Consultation”, “Management”, and “My”. The patient-end program scored 78.75 on the System Usability Scale and showed a 100% task passing rate, indicating that the programs were easy to use.

Conclusions

Based on the contextual analysis, multi-stage optimization strategy, and interdisciplinary team work, a WeChat mini-program has been developed tailored to the requirements of the nurses and patients. This approach leverages the expertise of professionals from multiple disciplines to create effective and evidence-based solutions that can improve patient outcomes and quality of care.

Peer Review reports

Female breast cancer is the second leading cause of global cancer incidence in 2022, with an estimated 2.3 million new cases, representing 11.6% of all cancer cases [ 1 ]. Due to surgical trauma, side effects of drugs, fear of the recurrence or metastasis of breast cancer, changes in female characteristics, and lack of knowledge, patients with breast cancer frequently experience a series of physical and psychological health problems [ 2 , 3 , 4 , 5 , 6 ]. These health problems seriously affected patients’ life and work [ 7 , 8 ]. At present, community nursing in China is still in the developing stage, and the oncology specialty nursing service capacity of community nurses is not enough to deal with the health problems of breast cancer patients. It made continuous care for out-of-hospital breast cancer patients a weak link in the Chinese oncology nursing service system.

Nowadays, case management is employed to manage health problems for out-of-hospital breast cancer patients worldwide [ 9 , 10 , 11 , 12 , 13 , 14 , 15 ]. Case management involves regular telephone follow-ups and home visits by case management nurses to provide educational support to patients, thereby ensuring uninterrupted continuity of care [ 16 , 17 ]. The home visits and organization of patient information required for case management tasks consume a significant amount of time, manpower, and material resources [ 17 ]. In China, case management services are primarily undertaken by oncology nursing specialists from tertiary hospitals in their spare time [ 18 ]. However, the shortage of nurses has consistently been one of the major challenges facing the nursing industry in China, especially in tertiary hospitals [ 19 ]. Consequently, the implementation and promotion of case management in China also face great difficulties in reality [ 20 ].

The Global Observatory for eHealth (GOe) of the World Health Organization (WHO) defines mobile health (M-Health) as “medical and public health practice supported by mobile devices, such as mobile phones, patient monitoring devices, personal digital assistants (PDAs), and other wireless devices” [ 21 , 22 ]. With the development of digital technology and the COVID-19 pandemic in 2019, M-Health applications were further integrated into healthcare services, which increased the demand for M-Health applications in turn [ 23 , 24 ]. Compared with the traditional health service model, M-Health service model has the advantages of high-level informatization, fast response speed, freedom from time and location constraints, and resource-saving, etc. In the context of limited nursing human resources, M-Health service provides a new solution for the case management of out-of-hospital breast cancer patients [ 23 , 25 , 26 ].

Researchers have developed a range of M-Health applications targeting breast cancer patients. To our knowledge, none of these developed M-Health applications are designed for case management nursing services.

Early M-Health applications were mostly designed for single interventional goals, such as health education, medication compliance, self-monitoring, etc. Larsen et al. applied a M-Health application to monitor and adjust the dosage of oral chemotherapy drugs in breast cancer patients, and the results suggested that the treatment adherence was effectively improved [ 27 ]. Heo and his team successfully promoted self-breast-examination behavior in women under 30 years old using a M-Health application [ 28 ]. Mccarrol carried out a M-Health diet and exercise intervention in overweight breast cancer patients and found that the weight, BMI, and waist circumference of the intervention group decreased after one month [ 29 ]. Smith’s team found that their application promoted the adoption of healthy diet and exercise behaviors among breast cancer patients [ 30 ]. The application designed by Eden et al. enhanced the ability of breast cancer patients receiving chemotherapy to recognize adverse drug reactions [ 31 ]. Keohane and colleagues designed a health educational application based on the best practices and it proved effective in improving breast cancer-related knowledge [ 32 ]. The guideline-based M-Health application developed by Eden et al. optimized breast cancer patients’ individualized health decision-making regarding mammography [ 33 ].

With the progress of computer technology and the emphasis on physical and mental rehabilitation of breast cancer patients, some universities [ 34 , 35 ] in China have separately developed M-Health applications for comprehensive health management, which provide access to online communication, health education, and expert consultation.

Analyzing these developed applications deeply, three factors could be found that hindered the promotion of applications in real life. Firstly, the developing procedure usually lacks contextual analysis based on the actual usage context during the design phase. Secondly, there is a lack of consistent and long-term monitoring and operation staff in the subsequent program implementation. These factors may be the main reasons why many M-Health applications face difficulties in promotion and continuous operation after the research phase. Furthermore, as applications need to be installed on patients’ smartphones, certain hardware requirements, such as memory, may also pose restrict the adoption of M-Health applications to some extent.

In order to meet the needs of supportive care for out-of-hospital breast cancer patients and the needs of case management for oncology nurse specialists, we formed a multidisciplinary research team and collaboratively developed a WeChat mini-program for breast cancer case management in the CMBM (M-health for case management model in breast cancer transitional care) project. WeChat is chosen as the program development platform based on the following considerations. Firstly, WeChat is the most popular and widely used social software in China. As of December 31, 2020, the monthly active users of WeChat have exceeded 1.2 billion, and the daily active users of WeChat mini-programs exceeded 450 million [ 36 ]. Secondly, users can access and use the services of the mini-program directly within the WeChat platform, without the need to download or install additional mobile applications. This reduces the hardware requirements for software applications. The above two factors allow for a positive user experience and a realistic foundation for software promotion.

The purpose of this study is to describe the process of developing a tailored M-health component for the case management model in breast cancer transitional care and to highlight methods for solving the common obstacles faced during the application of M-health nursing service.

Methods and results

The development process was conducted in four steps: (a) An interdisciplinary development team was formed, consisting of two sub-teams dedicated to content and software development. (b) Using the self-management theory as the theoretical framework, contextual analysis was used to understand the case management needs of oncology nursing specialists and the supportive care needs of out-of-hospital breast cancer patients. Through iterative discussion within the interdisciplinary team, the preliminary conception of the application framework and function was formed. (c) A multi-stage optimization strategy was adopted to develop and regularly update the WeChat mini-programs, including three stages (screening, refining, and confirming). (d) During the entire development process, a user-centered principle was followed with the involvement of oncology nursing specialists and breast cancer patients, including development, testing, and iterative development phases.

The interdisciplinary team

An important prerequisite for developing M-health applications is the formation of an interdisciplinary development team. We built a multidisciplinary team consisting of researchers, oncology nursing specialists, and software developers. Each team member brought their expertise from their respective fields, and all individuals were considered members of the same team rather than separate participants with a common goal.

Two sub-teams were established, one responsible for content development, and the other for software development. The content development team consisted of researchers and six senior breast oncology nursing specialists with bachelor’s degrees and over 10 years of clinical experience. Their work included contextual analysis, functional framework design, and content review of the “Information” module. The software development team included researchers and experienced software developers. Their tasks involved developing the mini-program based on the functional framework and requirements designed by the content development team.

The development team used contextual analysis to identify the actual usage needs of two target groups for the mini-program: oncologist nurse specialists and out-of-hospital breast cancer patients.

Involvement of oncology nursing specialists and breast cancer patients following user-centered design principle

Since the oncology nursing specialists and breast cancer patients are targeted users of the mini-program, the two groups fully participated in the development according to the user-centered principle. Nursing specialists who in charge of case management were interviewed about the preliminary functional framework of the mini-program. The interview results are presented in the section “Driving the Development Process via the Contextual Analysis Findings.” Semi-structured in-depth interviews were conducted in the testing and iteration stage to gain user feedback from nursing specialists to improve the applicability and usability of the mini-program. The interview guide can be found in the supplementary material.

Breast cancer patients fully engaged in the three developing phases (Screening, Refining, and Confirming). In the Screening Phase, since the self-management theory was selected as the theoretical framework, the supportive care needs of out-of-hospital breast cancer patients were explored, and the functional framework of the mini-program was constructed accordingly. In the Refining Phase, patients were invited to evaluate the usability and practicality of the mini-program through system tests and semi-structured in-depth interviews. The results of the system test are presented in the Results of System Test section. The feedback from interviews and corresponding iterative updates are listed in Table  1 . In the Confirming Phase, our research team is conducting clinical trials in out-of-hospital breast cancer patients to find out the actual effect of the mini-program on recovery.

The theory framework of the mini-program

This study applied the self-management theory [ 37 ] as the theoretical framework. The self-management theory explains how individual factors and environmental factors influence an individual’s self-efficacy, which ultimately affects the generation and development of individual behaviors. Self-efficacy is influenced by direct experience, indirect learning, verbal persuasion, and psychological arousal. By providing individuals with sufficient knowledge, healthy beliefs, skills, and support, their self-efficacy is increased, and they are likely to engage in beneficial health behaviors and self-management. Individuals who are confident in their abilities to apply self-management behaviors and overcome obstacles by improving their self-management skills and persevere in their efforts to manage their health [ 37 ]. Self-efficacy is directly and linearly positively related to the active adoption of health management behaviors [ 38 ]. The functions of the various parts of the mini-program designed using self-management theory can broaden the pathways and levels of efficacy information generation in four ways: direct experience, indirect learning, verbal persuasion, and mental arousal. Patients with high self-efficacy will take positive steps to achieve desired goals and possess disease-adapted behaviors. The form of the mini-application function block diagram is shown in Fig.  1 .

Driving the development process via the contextual analysis findings

Contextual analysis [ 39 ] is a method of discerning the profound significance and influence of language, behavior, events, and so forth, by examining them within a particular environment or background. Rather than being an afterthought, contextual analysis sheds light on the meaning and inner dynamics of our primary subject of interest. Through contextual analysis, we can gain a deeper understanding of the user’s usage scenarios, including their motivations, goals, environment, and behavior. This helps us better understand user needs, as well as the problems and challenges they may encounter when using the software.

In this paper, we adopted contextual analysis to gain a detailed understanding of the needs of oncology nurse specialists and out-of-hospital breast cancer patients. The research team adopted a mixed research strategy to achieve contextual analysis of the target users. A cross-sectional study was conducted among 286 patients and qualitative semi-structured in-depth interviews were applied in 12 patients to find out the supportive care needs of out-of-hospital breast cancer patients. According to the contextual analysis results from patients, the functional framework of the mini-program was constructed. See Fig.  2 for details.

Supportive care needs of out-of-hospital breast cancer patients

Contextual analysis of breast cancer case management nurses was conducted through focus group interview. The interview results were listed as three themes: health information, personal self-management, and case management needs. Health information included breast cancer-related knowledge, the side effects of chemotherapy drugs, and symptom management measures. The key task of personal self-management contained temperature monitoring, weight management, functional exercise, and symptom management. Case management needs involved storage and management of patients’ medical records and development of a nurse-end program.

Based on the contextual analysis results of out-of-hospital breast cancer patients and the oncology case management nurses, the framework and functional block of the mini-program were formed. An overview of the CMBM Software development process is listed in Fig.  3 .

Overview of the CMBM software development process

Patient-end program functional modules

Using the results of the contextual analysis, we design the functional modules of the patient-end program based on the patient’s supportive care needs. For example, the “Information” section is designed to meet the “Information need” of breast cancer patients; the “social needs” and “spiritual needs” of patients suggest that breast cancer patients lack peer support, and for this reason, the"Interaction” section for patients has been added to the app to provide a communication platform for patients.

The patient-end program include four functional modules: “Information”, “Interaction”, “Management” and “My”. In the “Information” module, information about breast cancer treatment and health management are compiled based on clinical guildlines. The “Interaction” module allows patients to interact with fellow patients and consult an case management nurse. In the “Management” module, patients can record and review their self-management-related health status, including three medical parameters (temperature, blood pressure, weight) and three behavioral parameters (daily steps, medication, mindfulness excersice). The “My” module enables patients to input and edit their basic personal information and medical history. The main structure and information support module contents are listed in Fig.  4 .

The main menu of patient-end program

Nurse-end program functional modules

The design of the functional modules of the nurse-end program was also derived from the results of contextual analyses. The nurse-end program includes three functional modules: “Consultation”, “Management”, and “My”. The “Consultation” module is mainly used for online communication between case management nurses and patients. Nurses can enter the patient’s name in the search box to open a dialog box, and communicate with each other by sending text, voice and pictures. In the “Management” module, nurses can effortlessly search for patients by entering their name, WeChat nickname, or mobile phone number in the search box. This initiates a seamless dialogue, and with a simple click of the “+” button, patients can be promptly added to the “My Concerns” list. They can view the medical record information on its homepage, and add the postoperative treatment plan for the patient. The “self-management report” feature empowers nurses to stay up-to-date with patients’ recent well-being. By monitoring vital indicators like temperature, weight, and incidents of nausea or vomiting following chemotherapy, nurses can proactively ensure patients’ safety. The “clock in record” feature meticulously logs various patient activities including weight variations, exercise regimens, and medication adherence, providing a holistic view of their health journey. “Treatment monitoring Schedule” enables nurses to create customized chemotherapy schedules. With the first postoperative chemotherapy session scheduled in the calendar, the system seamlessly computes subsequent chemotherapy sessions and associated assessments. This transition to an online system marks a significant advancement from the traditional paper-based chemotherapy planning. Its automated scheduling and data tracking functions serve to alleviate the clinical nursing workload, enhancing efficiency and freeing up valuable time for focused patient care. The “My” module offers nurses the convenience of adding patients of interest or relevant content to their “My Favorites” section, enabling streamlined one-click access for viewing and management. The core structure and informational components of this module are outlined in Fig.  5 .

The main menu of nurse-end program

Driving the development process via the multi-stage optimization strategy

We adopted a multi-phase optimization strategy to drive the software development process. This strategy was proposed by Collins in 2005 and has become an important guiding theory for the development and evaluation of M-health interventions in recent years [ 40 ]. The strategy consists of three phases: Screening Phase, Refining Phase, and Confirming Phase. The Screening Phase need theories to identify and incorporate intervention elements. In this study, the initial version (1.0) development was based on self-management theory. Focusing on self-management, the results of contextual analysis, literature review and expert consultation were combined to design the mini-program version (1.0). The Refining Phase involves iterative adjustments to the previously version. In this study, the development team iteratively adjusted the mini-program version (1.0) according to users’ suggestions and test results. The Confirming Phase includes planning for clinical trials to test effect of the mini-program version (2.0) on self-management and recovery outcomes in out-of-hospital breast cancer patients.

Results of system test

Eight out-of-hospital breast cancer patients were recruited for system tests. The patient’s general information is listed in Table  2 .

The 10-item System Availability Scale (SUS)developed by Brooke was used [ 41 ]. The scale is a widely used method for quantitatively assessing user satisfaction with software systems. SUS is a Likert-5 and 10-item questionnaire (4 = strongly agree, 0 = strongly disagree), with Cronbach Alpha of 0.91. Generally, a system score above 60 on the SUS scale could be considered to be easy and simple to use, and the average score of SUS in our research is 78.75. The SUS scores of the mini-program system are presented in Fig.  6 .

System availability scale (SUS) score of patients

The research team designed the core task tests based on the typical and necessary self-management tasks of out-of-hospital patients. The core task of the “Information” module was listed as an example (Table  3 ). Functional tests include the passing rate for each task, and performance tests include the completion time of each task. More details can be found in Table  4 .

In this article, we demonstrated how to create a customized software solution for breast cancer case management practices based on a multi-stage optimization strategy, applied the contextual analysis method, and followed the user-centered principle. Preliminary test results showed satisfaction and acceptance of the WeChat mini-program among both out-of-hospital breast cancer patients and oncology nursing specialists.

Team effort

There were two typical patterns for developing M-health applications in the past. One was led by software developers, while the other was led by medical professionals. Each of these patterns has its own advantages and disadvantages. To overcome these shortcomings, some projects [ 42 ] developing M-health applications are now utilizing interdisciplinary team collaborations. This approach not only ensures the quality of the software but also makes sure that applications meet the actual needs.

In order to develop a customized software solution, our research team consisted of researchers, oncology nursing specialists, and software developers. The interdisciplinary team work dedicated to customizing software solutions together. Our team members each played to their strengths and held regular meetings to discuss and enhance our understanding and resolution of issues encountered during the software development process. Our team also included informal members: breast cancer patients, whose suggestions contributed to the practicality of the program.

Contextual analysis and user-centered design

Contextual analysis is a valuable tool that enables developers to design systems that are more relevant and user-friendly. And it allows us to understand any context-specific characteristics, practice patterns, and the openness of the target setting’s nurses and patients towards technology [ 42 ]. User-centered design can significantly reduce the cost of program iteration. More importantly, it has a profound influence on various aspects of a program including its design, functionality, information architecture, and interactive elements [ 43 ]. By analyzing different contexts, not only did we design features that better meet user needs, but we also predicted and addressed potential issues that users may encounter when using the mini-program in advance, thereby enhancing the user experience. In the iterative development stage, we discovered and improved some deficiencies in the design through core task testing and usability testing. Notably, the completion rate of the core task test reached 100%, indicating that our application is user-friendly and easy to operate.

• Multi-stage optimization strategy

In several priority areas of public health, researchers have successfully applied multi-stage optimization strategies to enhance their work, including software development and intervention programs [ 44 , 45 , 46 ]. In this study, we also apply this strategy to software development. While the multi-stage optimization strategy provides an optimization framework, it is important to note that our optimization objectives (such as software functionality and content requirements) are determined by key users involved in the research (out-of-hospital breast cancer patients and oncology nurse spescialists). This project adopts a multi-stage optimization strategy, iteratively improving the development of the mini-program through screening, refinement, and confirmation stages. Each stage aims to optimize our program.

The research team plans to explore the feasibility of mini program development program through preliminary experiment, and verify the intervention effect of mini program on self-management behavior, self-efficacy and quality of life and other indicators through formal experiment. A randomized controlled trial (IRB-2020-408) was initiated in August 2022 at a Class III hospital in Zhejiang, China, and is currently in the data collection phase.

There is no doubt that M-health will play a core role in the future of health care. However, to successfully implement and promote M-health applications in clinical setting, it is essential to analyze the needs of the target population. Additionally, it is crucial to determine who will be the driving force behind the implementation of the entire M-health project. This study demonstrates how to integrate M-health components into existing breast cancer case management care practices. In addition to providing a reference for other teams interested in developing and integrating M-health components into case management care models, this study also provides a reference for building M-health-featured care work models in practices.

In this study, the collaborative work of an interdisciplinary team with backgrounds in nursing and computer science, along with the active involvement of patients, not only facilitated the planning, developing, updating, and testing of M-health components based on the actual needs of the target population, but also increased the chances of acceptance and long-term implementation of the M-health program in practice.

This study demonstrates how to integrate M-health components into existing breast cancer case management practices. It provides insights for other reserch teams interested in developing and integrating M-health components into daily nursingt practice.

In the context of the digital age, M-health applications are rapidly becoming information sources and decision support tools for healthcare professionals and patients. However, it is crucial not to overlook the issues of information security and digital barriers for older adults.

Through interviews with outpatients with breast cancer and oncology nurses, we have gained insights into their concerns regarding information security. Some interviewees expressed concerns about information security and were worried about the risk of their personal information being leaked during app usage. Such concerns, to some extent, hinder the widespread adoption of M-health applications. Additionally, some interviewees mentioned that older patients, in general, find it challenging to learn and use the various functions of WeChat mini-programs, making it difficult to promote and apply M-health applications among the elderly population.

Solving these issues effectively is not only vital for the patients’ rights and interests but also crucial for the comprehensive implementation of M-health in practice. It is a matter that requires careful consideration in future development of M-health applications.

Data availability

The datasets generated and/or analysed during the current study are not publicly available but are available from the corresponding author on reasonable request.

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Acknowledgements

The authors would like to express our sincere gratitude to all the breast cancer patients who participated in this research.

This study was supported by the Zhejiang Provincial Natural Science Foundation of China (LY18H160061) and Funding for innovation and entrepreneurship of high-level overseas students in Hangzhou.

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Hong Chengang, Wang Liping, Wang Shujin, Chen Chen, Yang Jiayue, Lu Jingjing, Hua Shujie, Wu Jieming, Yao Liyan, Zeng Ni, Chu Jinhui & Sun Jiaqi

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HCG conceived the entire paper framework and was responsible for writing the paper. WSJ and CC conducted all interviews and managed the mini-programs. YJY, LJJ and HSJ were responsible for the collection of clinical nurse data. CJH and SJQ were responsible for patient data collection. Data analysis was conducted by WJM, YLY and ZN. WLP was responsible for the revision, editing and approval of manuscripts. All authors have rigorously revised and edited successive drafts of the manuscript. All authors read and approved the final version of the manuscript.

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Correspondence to Wang Liping .

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The study was reviewed and approved by the Ethics Committee of ZheJiang Cancer Hospital (Ethic ID: ZJZLYY IRB-2020-408). All the participants signed written informed consent forms. This study was conducted in accordance with the 1964 Declaration of Helsinki guidelines.

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Chengang, H., Liping, W., Shujin, W. et al. Multi-stage optimization strategy based on contextual analysis to create M-health components for case management model in breast cancer transitional care: the CMBM study as an example. BMC Nurs 23 , 385 (2024). https://doi.org/10.1186/s12912-024-02049-x

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Ethical Challenges Experienced by Healthcare Workers Delivering Clinical Care during Health Emergencies and Disasters: A Rapid Review of Qualitative Studies and Thematic Synthesis

Mariana dittborn.

a Paediatric Bioethics Centre, Great Ormond Street Hospital, London, UK;

b Center for Bioethics, Faculty of Medicine, Clínica Alemana Universidad del Desarrollo, Santiago, Chile;

Constanza Micolich

c Palliative Care Unit, Mauricio Heyermann Hospital of Angol, Angol, Chile;

Daniela Rojas

d Yo Mujer Breast Cancer Corporation, Santiago, Chile

Sofía P. Salas

Background:.

The COVID-19 pandemic has posed several ethical challenges worldwide. Understanding care providers’ experiences during health emergencies is key to develop comprehensive ethical guidelines for emergency and disaster circumstances.

Objectives:

To identify and synthetize available empirical data on ethical challenges experienced by health care workers (HCWs) providing direct patient care in health emergencies and disaster scenarios that occurred prior to COVID-19, considering there might be a significant body of evidence yet to be reported on the current pandemic.

A rapid review of qualitative studies and thematic synthesis was conducted. Medline and Embase were searched from inception to December 2020 using “public health emergency” and “ethical challenges” related keywords. Empirical studies examining ethical challenges experienced by frontline HCWs during health emergencies or disasters were included. We considered that ethical challenges were present when participants and/or authors were uncertain regarding how one should behave, or when different values or ethical principles are compromised when making decisions.

After deduplication 10,160 titles/abstracts and 224 full texts were screened. Twenty-two articles were included, which were conducted in 15 countries and explored eight health emergency or disaster events. Overall, a total of 452 HCWs participants were included. Data were organized into five major themes with subthemes: HCWs’ vulnerability, Duty to care, Quality of care, Management of healthcare system, and Sociocultural factors.

Conclusion:

HCWs experienced a great variety of clinical ethical challenges in health emergencies and disaster scenarios. Core themes identified provide evidence-base to inform the development of more comprehensive and supportive ethical guidelines and training programmes for future events, that are grounded on actual experiences of those providing care during emergency and disasters.

Introduction

A newly emergent coronavirus (SARS-CoV-2) first recognized in Wuhan, China, in December 2019, is responsible for causing COVID-19 disease. The severity of the disease and the widespread of its transmission prompted the World Health Organization (WHO) to declare it as a pandemic in March, 2020 ( World Health Organization 2020 ).

Despite a significant focus on healthcare sector preparedness and response to this emergency, the serious health needs of many people have put healthcare services and providers under great pressure. This scenario has prompted medical associations, international organizations, and governments to offer clinical ethics guidelines for the pandemic ( Joebges and Biller-Andorno 2020 ; Teles-Sarmento, Lírio-Pedrosa, and Carvalho 2021 ). Although not exclusively, most guidelines address issues related to health-resource limitations and frontline healthcare workers’ (HCWs) rights and obligations ( World Medical Association 2017 ; McGuire et al. 2020 ; Leider et al. 2017 ; Joebges and Biller-Andorno 2020 ; Valera, Carrasco, and Castro 2021 ; World Health Organization 2016 ; Teles-Sarmento, Lírio-Pedrosa, and Carvalho 2021 ). However, these might not necessarily address the extent of the real-world ethical issues experienced by those delivering direct patient care ( McGuire et al. 2020 ). The development of ethical guidelines has been criticized for lacking transparency in its standards and processes for the formulation and quality of the ethical recommendations provided ( Mertz and Strech 2014 ). Accordingly, in order to improve the guidelines and the acceptability and quality of ethical recommendations the development should follow a systematic and transparent process ( Mertz and Strech 2014 ). Mertz and Strech’s (2014) six-step approach for the development of ethical recommendations suggests that the first step should be to establish the full range of disease specific ethical challenges to improve the quality and appropriateness of the guideline, recommending a systematic review of issue-specific ethical challenges ( Mertz and Strech 2014 ).

Qualitative evidence synthesis include different methodologies used for the systematic review of qualitative research evidence ( Flemming et al. 2019 ). By synthetizing findings from studies of qualitative design, qualitative evidence synthesis offer a better understanding of complex and context-sensitive issues, such as participants’ behaviors, experiences and interactions around the issue being address ( Flemming et al. 2019 ). The synthesis results go beyond individual studies and can contribute to inform new theories, policy and guideline development, clinical practice and areas in need of further research ( Munn et al. 2014 ; Flemming et al. 2019 ). Given that the experience of ethical dilemmas is an underexplored and a highly context-sensitive field, qualitative data provides a better means to answer our research question. Accordingly, a preliminary review suggested that the great majority of potentially included studies were of qualitative design.

Published systematic reviews on ethical challenges in healthcare emergencies are either focused on context-specific: technological disasters ( Khaji et al. 2018 ), group-specific: nurses ( Johnstone and Turale 2014 ); pregnant women ( Hummel, Saxena, and Klingler 2015 ); children and families ( Hunt, Pal, et al. 2018 ) or focused on a particular issue: willingness to work ( Aoyagi et al. 2015 ). We therefore conducted a rapid review of qualitative empirical bioethics literature focused on ethical challenges experienced by HCWs providing direct patient care during healthcare emergencies and/or disasters. Although some empirical research has been already published exploring ethical challenges during the COVID-19 pandemic ( Sperling 2021 ; Mazza et al. 2020 ; George et al. 2020 ; Friedman et al. 2021 ), there might be a significant body of evidence yet to be reported. Therefore, we excluded COVID-19 related data in this review.

The aim of this study is to identify and synthesize evidence from available qualitative studies on ethical challenges experienced by HCWs, in health emergencies and disasters, before COVID-19 pandemic. We hope that this evidence could inform new guidelines for future health emergencies and disasters, aiming to support good clinical practice and prevent moral distress and its negative impact on HCWs’ wellbeing and performance ( Viens, McGowan, and Vass 2020 ).

We conducted a rapid review of qualitative studies and thematic synthesis. The review design was based on a proposed approach for systematic reviews of empirical bioethics ( Strech, Synofzik, and Marckmann 2008 ) together with Butler et al’s guide to writing a qualitative systematic review protocol ( Butler, Hall, and Copnell 2016 ) and the Interim Guidance from the Cochrane Rapid Reviews Methods Group (Garritty et al. 2020). The included items in this review are reported following the Preferred Reporting Items for Systematic Reviews and Meta-Analysis statement 2020 ( Page et al. 2021 ).

The review protocol has not been published nor prospectively registered.

Eligibility criteria

We used the Methodology, Issues, Participants (MIP) model to define the inclusion and exclusion criteria ( Strech, Synofzik, and Marckmann 2008 ) ( Table 1 ).

Eligibility criteria.

We operationalized three key concepts: (i) Health emergencies and disasters include any hazard – natural, man-made, biological, chemical, radiological and others, that implies a “disruption of the functioning of a community or a society causing widespread human, material, economic or environmental losses which exceed the ability of the affected community or society to cope using its own resources” ( United Nations Office for Disaster Risk Reduction and World Meteorological Organization 2012 ); (ii) Ethical challenges were identified when study participants or study authors ( Schofield et al. 2021b ) reflect on uncertainties regarding how one should behave, act, or react in a certain situation, or when different values or ethical principles are compromised when making decisions ( Hem et al. 2018 ); and (iii) HCWs providing direct patient care include: health professionals, health associate professionals, personal care workers in health services, support personnel, and other health service providers ( World Health Organization 2008 ).

Search strategy

A literature search was conducted in Medline and Embase electronic databases, from inception to December 2020. Key words were related to “public health emergency” and “ethical challenges” and adapted for each database requirement. See the Medline search strategy in Table 2 .

Medline search strategy.

Retrieved references were managed using RefWorks ® reference manager software. After deduplication, two authors (CM and MD) independently screened all titles/abstract against inclusion/exclusion criteria. Selected studies for full text review were dually screened (CM and DR) for final inclusion. Disagreements were discussed within the team, until consensus was reached. Data was independently extracted by two authors (CM and DR) using an Excel form including author, publication year, study setting (health emergency or disaster context, year and country), study objective and study design, data collection instruments, participants’ characteristics and study results relevant for the review aim. All texts included in the results section were considered as study findings ( Thomas and Harden 2008 ; Noyes et al. 2018 ).

Data analysis

Aiming to produce a rich thematic description of the entire dataset ( Braun and Clarke 2006 ), we conducted an inductive thematic synthesis ( Thomas and Harden 2008 ), for qualitative data analysis. This method was considered appropriate as it allows a more flexible approach to the different theoretical frameworks underpinning individual studies, and offered a well-structured approach that best fitted the research team’s skills and experience with qualitative data synthesis methods ( Nowell et al. 2017 ). Two authors (CM and DR) independently conducted inductive line-by-line coding of individual study results. Codes and corresponding quotes were migrated to a Microsoft Excel ® worksheet, an accessible alternative to the qualitative data analytic software ( Bree and Gallagher 2016 ). The initial worksheet included three columns (i) study author, (ii) quote from original study, and (iii) code(s). These codes were then organized into descriptive themes after discussion within the authors, considering that individual codes could contribute to more than one theme/subtheme. Thereafter, each initial descriptive theme was sorted into different worksheets to facilitate further analysis. Then, each author independently revised the themes with the initial codes and quotes. Further group discussion led to checking several quotes to ensure accurate interpretation of the primary data and the review’s credibility ( Nowell et al. 2017 ). Moreover, when considered appropriated, certain quotes were recoded and several codes were relocated into different themes/subthemes. Finally, multiple group discussion allowed for the refinement of themes and subthemes and its reorganization into broader descriptive themes and subthemes ( Dixon-Woods et al. 2005 ), which were reviewed by all the authors to improve the trustworthiness of the results. A detailed description of study characteristics (country, healthcare emergency/disaster and participants’ role) are provided to help the readers to contextualize the findings and assess the transferability of the results ( Nowell et al. 2017 ). We did not conduct quality appraisal for individual studies, neither assessed the confidence in the review findings.

This review included only published data and therefore did not require ethical approval.

The electronic search retrieved 14,080 titles. After deduplication 10,160 titles/abstracts and 339 reports were sought for retrieval with 224 assessed in full text for eligibility. Finally, 22 articles were included in data synthesis. See PRISMA Flow diagram in Figure 1 .

Prisma flow diagram. *Records identified from each database and **excluded by automation tools and manually.

Description of included studies

We included 22 qualitative studies published between 2004 and 2020 and conducted in 15 countries. Studies addressed multiple health emergencies and disasters including: Infectious diseases (Severe acute respiratory syndrome -SARS 2003, Influenza -H1N1 2009, Middle East Respiratory syndrome -MERS-CoV2 2015, and Ebola Virus Disease -EVD 2014–2016), natural disasters (fires -San Diego 2007 and Tasmania 2012/13, hurricanes -Katrina 2005 and Wenchuan Earthquake), and three studies addressing unspecified health emergencies (multiple humanitarian, mass casualty and natural disaster crises). Detailed study characteristics are provided in Table 3 and an overview of characteristics of included literature in this review is shown in Table 4 .

Characteristics of included studies.

SARS: Severe acute respiratory syndrome; MERS-CoV2: Middle East Respiratory syndrome; EBV: Ebola Virus Disease; HCW: Healthcare workers

Characteristics of included data in review (n = 22).

SARS: Severe acute respiratory syndrome ; MERS-CoV2: Middle East Respiratory syndrome ; EBV: Ebola Virus Disease ; HCW: Healthcare workers

Synthesis of the evidence

We organized our findings into five major themes with subthemes, and provide representative quotes to illustrate them. To provide an overview of the review findings, Table 5 shows the main themes and sub-themes with contributing studies, and represented health emergency/disaster scenarios.

Main themes and subthemes with contributing studies and represented health emergency/disaster scenarios.

Vulnerability ( Corley, Hammond, and Fraser 2010 ; Geisz-Everson, Dodd-McCue, and Bennett 2012 ; Lam and Hung 2013 ; Kunin et al. 2015 ; Li et al. 2015 ; Wright et al. 2021 ; Pourvakhshoori et al. 2017 ; Mulligan and Garriga-López 2021 ).

The concept of vulnerability “ reflects the fact that we all are born, live, and die within a fragile materiality that renders all of us constantly susceptible to destructive external forces and internal disintegration ” ( Fineman 2012 , 71). By recognizing themselves as vulnerable, people also understand vulnerability as the need for care, responsibility and solidarity, and not the exploitation of this condition by others ( Morais and Monteiro 2017 ).

Participants’ accounts illustrated the experience of vulnerability, as human beings susceptible to damage, suffering or death, in its individual and relational anthropological dimensions. At an individual level, uncertainty about risks and lack of knowledge on appropriate control and safety measures generated helplessness, fears of and guilt about themselves and/or their relatives becoming affected by the disease or by potential aggressions due to the chaos and violence caused by the crisis.

One of the things that needed to be considered was how to comfort the rescuers who went to the disaster area. Compared with the victims, our psychological problems also needed to be paid attention to. (Nurse, China) ( Li et al. 2015 ).

In addition to these factors, increased workload and pressure were also experienced as threats to participants mental health wellbeing, with many reporting anxiety, insomnia, fatigue, irritability, and substance abuse, as expressed by a participant: “I took to drinking [alcohol] every day for several weeks. I had to go back to work, so I couldn’t sustain that.” (Nurse, USA) ( Geisz-Everson, Dodd-McCue, and Bennett 2012 , 210).

Participants also perceived their vulnerability in terms of their relationship with peers and patients, frequently identifying themselves with others’ vulnerability; caring for their colleagues or patients with whom they shared certain characteristics led them to reflect on their own mortality and a feeling of shared uncertainty and fears, blurring the distinction between patient and care provider.

…Cause now we were part of everyone, the thousands of people that were stranded all along [Interstate]10 and walking around in a daze … coming up to us, asking us for help. We needed help ourselves… (Nurse, USA) ( Geisz-Everson, Dodd-McCue, and Bennett 2012 , 209).

For some participants these feelings of shared vulnerability motivated a sense of solidarity within their community, helping and supporting each other, colleagues, and citizens, beyond their strict professional duties ( Mulligan and Garriga-López 2021 ).

Duty to care

Duty to care refers to the healthcare professionals’ role-based responsibility to provide care to patients, even when this involves some degree of burden or risk to the clinician ( McDougall 2014 ). Findings show that HCWs acknowledge they are normally exposed to certain known risks during their practice. However, emergency and disaster scenarios imply uncertain, and maybe greater risks, challenging the balance between their professional duty to care and the level of risk they ought or are willing to expose themselves and their families to. Findings around the duty to care were organized into three sub-themes:

Arguments grounding, and limiting, the duty to care

( Almutairi et al. 2018 ; Bensimon et al. 2007 ; Davidson et al. 2009 ; Draper and Jenkins 2017 ; Geisz-Everson, Dodd-McCue, and Bennett 2012 ; Kiani et al. 2017 ; Lam and Hung 2013 ; Lee, Hong, and Park 2020 ; Mak and Singleton 2017 ; Pourvakhshoori et al. 2017 ; Straus et al. 2004 ; Wright et al. 2021 ; Li et al. 2015 ). Participants mentioned a diversity of arguments including those related to professionalism and deontological duty, as expressed by this nurse:

Everyone has to take their own responsibility towards the society. If I, as a nurse, retreated from the threats of influenza, who is going to help the sick people? It is a feeling of mission calling. I am doing what I need to do as a nurse, rather than act cowardly. (Nurse, Hong Kong) ( Lam and Hung 2013 , 244).

Some participants pointed to explicit duties established in their employment contracts, which might also draw the limits to their duty; “I didn’t sign up for this” or “they don’t pay me enough to take this kind of risk”(Doctor, Canada) ( Straus et al. 2004 , 83).

Commitment toward their colleagues; spiritual beliefs, personal benefits, and an obligation coming of holding particular competences to perform certain clinical tasks were also described. For some participants, the differences among colleagues generated conflicts, critically judging those who did not attend to provide care. Particularly within those serving military and/or humanitarian action institutions, an over-arching duty to assist when required was recognized.

Balancing the duty to care against the risks and burdens

( Almutairi et al. 2018 ; Bensimon et al. 2007 ; Davidson et al. 2009 ; Draper and Jenkins 2017 ; Geisz-Everson, Dodd-McCue, and Bennett 2012 ; Kiani et al. 2017 ; Lee, Hong, and Park 2020 ; Mak and Singleton 2017 ; Pourvakhshoori et al. 2017 ; Straus et al. 2004 ; Wright et al. 2021 ). Participants recurrently mentioned their personal safety as a critical factor to be considered. The burdens and emotional impact of uncertainty regarding risks, and access to appropriate professional protective equipment (PPE) was a conditioning element to participants’ disposition to responding to their duty.

As time goes by, the hospital’s atmosphere becomes more and more serious, as the severity of the symptoms increases and the number of patients increases, so the guidelines for protective equipment are constantly changing. As I became more and more anxious about what I was doing… I thought I could get MERS if I did wrong. I couldn’t say it, but my fears grew… (Nurse, Korea) ( Lee, Hong, and Park 2020 ).

Further on, family safety and household responsibilities (i.e., pet care, home security) are also considered in this balance implying certain limits to participants’ duty to provide care as reported by this nurse: “My most troubling things were, one, not knowing where my mother was….” Nurse, USA) ( Geisz-Everson, Dodd-McCue, and Bennett 2012 , 208).

Among military workers, the duty to assist as a soldier was seen to overcome the obligations as a HCW and risk appeared to be less relevant and even an accepted threat of their occupation: “[…]if you join the Army you are expecting to get sent into risky places and the, the whole purpose of the Army is so that we can take that risk and so that the UK can remain safe” (Military medical personnel, UK) ( Draper and Jenkins 2017 , 77).

Features of the duty to care

( Bensimon et al. 2007 ; Davidson et al. 2009 ; Geisz-Everson, Dodd-McCue, and Bennett 2012 ; Kiani et al. 2017 ; Lee, Hong, and Park 2020 ; Wright et al. 2021 ). Participants considered that their duty to care should not discriminate against individuals for their background, beliefs, medical condition, and associated risks to the provision of care. “Providing services on a preferential basis and in view of ethnicity, race, fellow citizenship, etc., is just unethical”(Participant, Iran) ( Kiani et al. 2017 , 346).

Additionally, participants considered that the duty to care has different degrees of obligatoriness; some regard this duty as an absolute commitment, while others consider it to have certain limits and even a voluntary call or a supererogatory duty under particular circumstances.

Quality of care

HCWs’ reported that their ability to deliver good quality care and achieve the desired health outcomes posed several ethical challenges. These were organized into three subthemes:

Challenges to the provision of person and family-centered care

( Corley, Hammond, and Fraser 2010 ; Gearing, Saini, and McNeill 2007 ; Hunt, Chénier, et al. 2018 ; Koller et al. 2006 ; Kunin et al. 2015 ; Lam and Hung 2013 ; Lee, Hong, and Park 2020 ; Straus et al. 2004 ). Lack of time and the use of PPE have a negative impact in communication and the ability to connect with patients, eventually affecting patients’ care. Participants experienced challenges in providing compassionate care and respecting patients’ dignity, feeling unable to address the emotional dimension, understanding patients’ preferences and values, and promoting patient’s autonomy and shared decision-making processes. These constraints, alongside to isolation caused by infectious control measures or to infrastructure destruction, were especially relevant when patients were dependent on other community members or required language translation support. Participants also expressed concerns that patient’s respect for privacy and confidentiality could not be guaranteed, i.e., conflicts around the use of cameras to monitor patients ( Hunt, Chénier, et al. 2018 ), as mentioned by this participant: “That’s a huge piece of it too, like – not being on display for everybody, so having privacy, I think, when you’re talking about what’s important in palliative care, the dignity aspect is huge”(Participant) ( Hunt, Chénier, et al. 2018 , 12).

Additionally, new isolation and visiting policies challenged involvement of relatives into patients’ care and decision-making, which was considered especially relevant in pediatric and end-of-life care scenarios.

There were children in isolation who used the phone as a security object. There was one child who had the phone to his head all the time… In his sleep, he grabbed the phone and hung onto it like a teddy bear, because that was his line to his family. (Social worker, Canada) ( Gearing, Saini, and McNeill 2007 , 23)

Resource allocation

( Draper and Jenkins 2017 ; Hunt, Chénier, et al. 2018 ; Kunin et al. 2015 ; Kiani et al. 2017 ; Mak and Singleton 2017 ; Pourvakhshoori et al. 2017 ; Wright et al. 2021 ). Triage and resource allocation were experienced as ethical challenges from different perspectives; when deciding which patient gets “the only ventilator in the red zone” ( Draper and Jenkins 2017 , 77) and, as referred by members of humanitarian groups, when institutional policies prevented the use of available resources (i.e., empty beds) that were meant to be saved for patients with a specific disease or a particular group of people ( Hunt, Chénier, et al. 2018 ). In both scenarios, participants felt individual patients were receiving substandard care. Additionally, they expressed concerns that when no clear guidance is available, triage and prioritization decisions might follow questionable criteria, such as families’ pressures.

You know? Because the victims’ families pulled us to this side or that side, on the other hand, there was no plan. The priority of care delivery depends on who cries more, to attract the nurses’ attention to attend to their victims. Everyone tried to show that their patients were in more urgent need compared to the other patients (Nurse, Iran) ( Pourvakhshoori et al. 2017 , 7)

Resource constraints, mostly in relation to staff availability, were particularly challenging in relation to end-of-life care scenarios, with several participants feeling that although compassion is central to responding to healthcare emergencies, it is largely neglected, prioritizing a focus on saving as many lives as possible.

I’ve literally watched hundreds of babies seize to death and it’s just a terrible… But I didn’t have a way of keeping them comfortable, and letting them die in a warm, comfortable place and that really haunts me. (Participant) ( Hunt, Chénier, et al. 2018 , 12).

Competence and professionalism

( Kiani et al. 2017 ; Kunin et al. 2015 ; Lee, Hong, and Park 2020 ; Li et al. 2015 ). Participants acknowledged that either lack of training and preparedness, providing care outside their usual professional role and skills, or being emotionally affected by the situation limited the provision of standard care: “Knowledge and experience form the basis of ethical performance. Incompetent workers create problems for everyone”(Participant, Iran) ( Kiani et al. 2017 , 346).

In relation to emergencies resulting from new diseases, lack of evidence and training often implied the use of novel equipment and/or innovative and “off label” therapies, potentially posing patients at unknown risks and burdens.

I’ve never prescribed Tamiflu until the swine flu season… it was a bit nerve wracking, because you’re prescribing a drug you don’t really know much about, new territory, you don’t know the risks, you don’t know the pros, and it was a bit unsettling. (Participant) ( Kunin et al. 2015 , 32)

Management of healthcare system

Participants reported how institutional policies and structural factors posed ethical challenges to the provision of direct patient care. These were organized into two themes representing different levels of decision-making:

Institutional policies and local management

(Al Knawy et al. 2019 ; Almutairi et al. 2018 ; Bensimon et al. 2007 ; Corley, Hammond, and Fraser 2010 ; Davidson et al. 2009 ; Gearing, Saini, and McNeill 2007 ; Geisz-Everson, Dodd-McCue, and Bennett 2012 ; Kunin et al. 2015 ; Kiani et al. 2017 ; Lam and Hung 2013 ; Mak and Singleton 2017 ; Pourvakhshoori et al. 2017 ; Tseng, Chen, and Chou 2005 ; Walker et al. 2020 ; Wright et al. 2021 ). Participants mentioned the challenges posed by poor organizational management at their local institutions, including decisions being made following a top-down approach without incorporating concerns of those providing direct care and therefore, lacking coherence with actual problems.

Poor communication between management and frontline staff, top-down approaches in decision and policy making, and lack of consistent and clear guidelines affected participants’ confidence in their own safety and their clinical decision-making. This posed greater burdens on them and affected the relationship with their patients and the provision of care as shown by this comment: “ Confusion about when people were no longer considered infectious… who decides this? No information to bedside nurses” (Nurse, Australia) ( Corley, Hammond, and Fraser 2010 , 581).

Participants highlighted the need to receive opportune, clear, and coherent guidelines and information about the emergency context and associated risks. HCWs praised the presence of a caring and collaborative institutional culture, which promoted respect for each other and greater commitment within teams.

“He often told us that employees’ lives can never be sacrificed, do our best, and that he would take full responsibility for everything. The Chief Executive said his attitude was one of fairness to every member of staff so he pads on each member of staff’s shoulder with the same weight” (Nurse, Taiwan) ( Tseng, Chen, and Chou 2005 , 63)

Following institutional orders not considered appropriate to the context was a common challenge within studies; while military members felt forced to implement these decisions ( Hunt, Chénier, et al. 2018 ), others advocated for a more pragmatic approach and the use of “common sense” in adapting rules to facilitate patients’ care ( Mak and Singleton 2017 ). “You’ve got to be pragmatic about what you can have ready for a disaster. It is what it is. As I said, you do the best you can with the systems you’ve got available to you.”(Pharmacist, Australia) ( Mak and Singleton 2017 , 166)

More broadly, participants perceived how a lack of solidarity between different institutions generated an unequal and unfair allocation of resources.

Global healthcare management

( Kunin et al. 2015 ; Geisz-Everson, Dodd-McCue, and Bennett 2012 ; Walker et al. 2020 ). From a systemic perspective, several participants referred to difficulties associated with poor service planning, unclear definitions of HCW’s roles during the emergency, allocation of responsibilities that exceed actual capacity and competences, and lack of integration of different service levels and providers, i.e., primary and secondary care. “I think there were a lot of uncertainties in my program as different guidelines were rolling in and out in terms of what you could or couldn’t do; I think a lot of staff were confused” (Social worker, Canada) ( Gearing, Saini, and McNeill 2007 , 23).

Sociocultural factors

This theme represents how the interactions of HCWs with broader society lead to ethical challenges in the provision of patient care. These were organized into four subthemes:

HCWs’ cultural competence

( Draper and Jenkins 2017 ; Hunt, Chénier, et al. 2018 ; Geisz-Everson, Dodd-McCue, and Bennett 2012 ; Walker et al. 2020 ). Participants highlighted a need to integrate culturally diverse beliefs when providing care, especially those who were deployed to international settings. This aspect was mentioned in relation to the perceived noncompliance with healthcare advice and public health measures, and to those patients holding alternative and conspiracy theories. Instead of simply labeling these as wrong, they need to be explored and better understood to adequately address them.

Participants also described that cultural competence was relevant when caring for dying patients. They reported challenges due to the additional barriers posed by the infection control measures in understanding and respecting individuals’ own beliefs and values around death and dying, including management of death bodies and death rituals.

We had 2 deaths… [T]hat bothered me a lot because we took [1] body across the street to the garage and left it there, because our morgue was in the basement, and it was flooded, and I thought, my God, here it is, somebody’s family member. (Nurse, USA) ( Geisz-Everson, Dodd-McCue, and Bennett 2012 , 208).

Discrimination to HCWs

( Almutairi et al. 2018 ; Al Knawy et al. 2019 ; Gearing, Saini, and McNeill 2007 ; Lee, Hong, and Park 2020 ). This challenge was only present in infectious disease outbreaks. Some participants suffered stigmatization and social isolation because of their role in caring for patients with infectious diseases. Some would avoid disclosing their roles to protect themselves and their families from being discriminated against. “I would find myself thinking about whether it was wise to go here or there and trying to make those decisions, balance what is reasonable and what might be better to not take part in” (Social worker, Canada) ( Gearing, Saini, and McNeill 2007 , 24).

Global responsibilities

( Corley, Hammond, and Fraser 2010 ; Gearing, Saini, and McNeill 2007 ; Al Knawy et al. 2019 ; Walker et al. 2020 ). Participants expressed concerns about the amount of PPE being used and disposed and the consequent environmental impact: ‘ ‘It was a huge number of big wheelie bins they had to take down, I think it was 80 in one day, full of masks and gowns” and “the workload was horrendous for the wards person staff” (Participant, Australia) ( Corley, Hammond, and Fraser 2010 , 581).

Additionally, the role of the media was questioned by participants, particularly when misrepresenting cultural attitudes regarding transmission through burial practices. Others perceived journalists contributed to the pressure put on HCWs by exacerbating the magnitude of the catastrophe.

Main findings

To the authors’ knowledge, this is the first structured review of empirical qualitative literature reporting ethical challenges experienced by frontline HCWs in emergency and disaster scenarios before the COVID-19 pandemic. This review includes studies conducted in eight different scenarios, 15 countries and participants with various occupations, providing a comprehensive view of ethical challenges from diverse perspectives. These challenges were grouped into five major themes; Vulnerability; Duty to care; Quality of care; Management of Healthcare system; and Sociocultural factors.

Many of the ethical challenges identified in this review are addressed and widely discussed in ethics guidelines on healthcare emergencies and disasters. However, as also found in other healthcare fields ( Braunack-Mayer 2001 ; Schofield et al. 2021b ), our findings suggest that HCWs providing direct patient care in emergency and disaster scenarios face a broader diversity of ethical challenges. This gap supports the promotion of bottom-up approaches and stakeholders’ involvement when developing ethical guidance to ensure these resources are coherent with real-world challenges.

Overall, most ethical challenges experienced by participants were common to the multiple emergency and disaster scenarios. However, some of them seem to be specific to certain situations (see Table 2 ). Military HCWs experienced dual-roles/obligations by holding both medical and military-based principles and duties which might diverge and thus pose additional difficulties in emergency circumstances. Also, particularly during infectious diseases outbreaks, HCW’s experienced issues associated with social isolation due to stigmatization and discrimination, and communication difficulties associated with the use of PPE.

The lived experience of vulnerability blurred the common vertical relationship, where patients are the vulnerable ones asking for help. The distinction between “they”, the patients, and “us”, the HCWs is diluted. Vulnerability is understood not merely restricted to the identification of certain groups in need of special protection but a wider relational concept where this shared condition of vulnerable human beings stands as the foundation of solidarity and responsibilities of care toward others ( Delgado 2021 ).

Furthermore, vulnerability permeates into the four other major themes: the protection required by HCWs as fundamental feature of the duty to care; the importance of support and guidance by institutions and the social discrimination toward HCWs during infectious disease outbreaks. Additionally, when HCWs recognize themselves as being vulnerable it could contribute to build a better clinical relationship.

Regarding HCWs’ duty to care, the American Medical Association’s (AMA) first Code of Medical Ethics (1848) addressed the issue of personal risk during epidemics: “When pestilence prevails, it is [physicians’] duty to face the danger, and continue their labors for the alleviation of suffering, even at the jeopardy of their own lives” ( American Medical Association 1848 , 105) maintaining this guidance for nearly two centuries. In 2006, the AMA added a longer-term perspective “ Physicians should balance immediate benefits to individual patients with ability to care for patients in future ” ( Morin, Higginson, and Goldrich 2006 , 421), leaving decisions on the level of risk to be taken to individual discretion and based on beneficence to future patients, without considering doctors’ further obligations to themselves and their loved ones ( Bailey 2010 ). With a different focus and emphasizing that responsibility toward patients’ safety is shared by individual nurses and institutional and health systems leaders, the latest version of the International Council of Nurses Code of Ethics (2021) also refers to the nurses’ responsibilities in being prepared and able to respond to emergencies and disasters ( Internacional Council of Nurses 2021 ). Our findings are aligned with the existing wide consensus that for HCWs to exercise their duty to care, governments, institutions and society have a moral obligation to provide them with due protection and support. This shall not be limited to PPE and other physical safety measures, but also include emotional and psychological care and more broadly, protection to HCWs loved ones when appropriate.

The wide variety of reasons grounding the individuals’ duty to care add a layer of complexity to the definition of HCWs’ obligations to care during healthcare disasters. Acknowledging the diversity of individual reasons and thresholds allows for personal vulnerabilities and contextual factors - which could strengthen or debilitate this obligation- to be considered. However, differences among individuals might generate tensions within colleagues and potentially affect teamwork, the sense of cohesion and mutual respect.

HCWs’ understandings on their duty to care during emergencies should be explored within teams as a way to respect individuals’ judgements and set preparedness plans accordingly ( Iserson 2020 ). Since the duty to care is mostly considered as an obligation of future healthcare professionals it should be discussed during training programs so that, when faced to the emergency situation, HCWs have already reflected on its implications and limits.

By requiring HCWs’ to switch into a public health approach where the focus is no longer the benefit of the individual patient but in benefiting the most, patients might receive substandard care when compared with normal circumstances. Many participants mentioned that the lack of clear and consistent triage and prioritization guidance, alongside with poor stakeholders’ involvement and lack of transparency in the guideline’s development process, lead to ethically challenging situations. Findings highlight the importance of a cohesive teamwork with a bottom-up approach and continuous effective communication, between different levels in maintaining the team’s morale, sense of belonging and mutual responsibility.

Participants were widely aware of their commitment to alleviate patients’ suffering but felt helpless in responding to it due to the primary focus on saving lives. Remarkably, most ethical guidelines mention the provision of compassionate end-of-life care as a minimum standard for those patients who will not receive lifesaving care after triage. However, findings suggest that this particular goal of medicine of relieving suffering ( Hastings Center 1996 ) is actually challenged. There seems to be an inconsistency between the guidelines’ general recommendations on the provision of end-of-life care and the actual possibilities and resources for this to be feasible. Ensuring palliative care as a minimum standard of care in response plans should also be considered in preparedness plans and resource allocation decisions ( Wynne, Petrova, and Coghlan 2020 ).

In a globalized world, cultural diversity is also a source of ethical challenges, particularly when faced with the need to modify death rituals and to understand how this might negatively impact relatives’ bereavement processes. Acquiring and practicing cultural humility, which implies respectful and active openness to differences, might be helpful in these circumstances where imposing restrictive measures will have a different impact for different cultural groups.

While ethical challenges are common and somehow inevitable in medical practice, the critical context during emergency and disaster emergencies exacerbates the likelihood of ethical challenges and consequently a greater risk of HCWs experiencing moral distress ( Viens, McGowan, and Vass 2020 ; Morley et al. 2020 ). Initially described by Jameton in 1984, moral distress refers to “the experience of knowing the right thing to do while being in a situation in which it is nearly impossible to do it” ( Jameton 2017 , 617). Evidence suggests that moral distress leads to impaired competency and wellbeing among practitioners eventually impacting patients’ care ( Lerkiatbundit and Borry 2009 ; Morley et al. 2019 ).

It is, however, important to note that by offering this synthesis of qualitative evidence and identifying the wider diversity of ethical challenges experienced by HCWs during healthcare emergencies and disasters, we do not attempt to draw any normative conclusion, i.e., as to how these ethical challenges ought to be experienced and/or solved ( De Vries and Gordijn 2009 ). Instead, we aim to contribute to further ethical reflection and offer evidence to inform the development of more context-sensitive and relevant ethical guidelines to appropriately support clinicians.

Strengths and limitations

To our knowledge, this is the first rapid review of empirical literature that provides an overview of clinical ethical challenges experienced by HCWs during health emergency and disasters. The review includes studies focused on a wide variety of contexts, different healthcare settings and diverse HCWs’ occupation. Although data suggest that particular fields will raise specific dilemmas, the overview provided by this synthesis allows a comprehensive view of ethical challenges that might inform the development of guidelines at institutional and system levels with a healthcare team rather than a profession/occupation-specific approach.

However, this review has some limitations. As a rapid review, only two electronic databases were searched and no citation and reference lists, nor gray literature were hand-searched, limiting the comprehensiveness of the review. Identifying ethical challenges within studies, both during the selection and data analysis processes, proved to be a difficult task since there is not a unique definition of what constitutes an ethical challenge ( Schofield et al. 2021a ). Consequently, there is a risk of having missed relevant studies and of overinterpretation or omission of ethical challenges during data analysis. These limitations were hopefully mitigated by independent dual screening and coding followed by multiple discussions within the whole research team. We did not conduct quality appraisal for included studies, neither assessed the confidence in the review findings and therefore validity and trustworthiness of the synthesis is not ensured.

Findings suggest that HCWs providing patient care in emergency and disaster scenarios face a diversity of ethical challenges in multiple dimensions of their caregiving roles. Core themes identified provide evidence to inform the development of comprehensive ethical guidelines and training programmes for current and/or future events that are grounded on actual experiences of those providing care during these scenarios. The development of clinical ethics guidelines should ensure a bottom-up approach, including frontline HCWs involvement. The provision of coherent and contingent support to frontline staff will reduce the risk of moral distress and its negative consequences for individual practitioners, institutions and individual patient’ care.

This work did not obtain funding.

Competing interests

Nothing to declare.

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A case study in the challenges facing health care

In 2023, the top six health insurers collectively earned over one trillion dollars in revenue, a staggering figure that has raised questions about whether the current healthcare dynamic is sustainable and serving all stakeholders effectively.

There's no question that health insurance provides a valuable service to millions of Americans. But when that much money winds up concentrated in such few hands, things are probably not working within the healthcare marketplace as they should. At a time when many hospitals are struggling to stay afloat and private health insurance premiums have  reached a record high , such strong financial numbers from insurers suggest an imbalance that requires attention. 

In a well-functioning insurance market, premiums paid should maintain a reasonable proportion to claims reimbursed. However, if this equilibrium becomes skewed -- as appears to be the case today -- it can lead to negative consequences for Americans of all stripes. A solution is needed for this pressing issue.

One of the major causes contributing to these challenges has been what appears to be a singular focus by health insurers to enhance their pricing power. This issue, which emerged as a concern in the wake of the  passage of the Affordable Care Act  has now turned into a full-blown crisis as some health insurance companies continue to vertically integrate their operations. 

This is not to say that all vertical integration, including that of healthcare systems, is not without promise. As someone who has worked within several such systems, both public and private, I have seen how the care of patients can be improved through tighter integration of various points along the healthcare value chain. It can serve to lower barriers to clinician communication, incentivize high quality practice patterns, and reduce inefficiencies in an extremely complicated and expensive delivery system. But this is only the case when the most important of all stakeholders is the patient. 

Conversely, recent restructuring efforts by insurers, which appear geared to further consolidate their control over rate-setting and skirt federal rules that cap how much they can retain in premiums for administrative costs and profits seem to go beyond this. It has not only garnered the attention of the Department of Justice (DoJ) but has also jeopardized resiliency in the healthcare system more broadly.

The recent scrutiny surrounding UnitedHealthcare, the largest health insurer in America, illustrates this point. Reports indicate that the DoJ has  launched an investigation  into the company for a range of anticompetitive practices stemming from its acquisition of Optum Health, a division that now controls a network of providers including 90,000 physicians, as well as surgery centers, health data and technology units, and a pharmacy-benefit manager. Investigators have expressed concerns that this network has been used to prevent rival physicians from accessing beneficial payment arrangements and to unfairly disadvantage health insurers that compete with UnitedHealthcare, among other things, demonstrating how such efforts to shift operations have allowed insurers to increase their profit margins and limit competition. 

The recent cyberattack on UnitedHealth's Change Health subsidiary further highlights the additional risks of concentrated market power. The company -- which was acquired by UnitedHealth in 2022  over DoJ objections – is the nation’s largest health care payment system and handles billions of transactions annually. Labeled “ the most significant cyberattack on the U.S. health care system in American history ,” the ensuing service disruptions have  caused financial chaos  for a broad spectrum of providers and demonstrate the hazards of vertically integrating such an array of services under one potential point of failure such as a health insurer like UnitedHealth.

Such incidents show how concentrating too many parts of the healthcare supply chain under one company can wreak havoc on the entire system. Unfortunately, these issues are not unique to UnitedHealth or any one insurer but reflect broader dynamics that are worthy of examination, especially against the backdrop of  nearly 200 rural hospital closures  since 2005 and major affordability issues for patients. 

Thoughtful solutions will be needed to lower the cost of health insurance to protect patient access to care and to ensure fair reimbursement for providers, and insurance companies, policymakers, and regulators should all have a shared interest in building a more balanced, resilient, and equitable healthcare system. There will also be a role to play for patient advocate groups, some of which including Arnold Ventures and Power to the Patients, have been vocal in Washington in opposition to necessary hospital mergers but have been curiously silent to date on the issue of consolidation in the health insurance industry.

Ultimately, the path to a better healthcare future starts with open and honest conversations. By acknowledging both the challenges and the opportunities before us, we can begin to bridge divides and find workable solutions. It will take creativity, compromise and a willingness to adapt -- but a healthcare system that delivers quality, affordable care to all Americans is possible if we work together in good faith. The time to start is now.

Dr. William Strimel, DO, is the Founder of Tulio Health, a specialty medical practice that provides a proactive approach to health and wellness for men, and the former President of a regional physicians network.

Image: UnitedHealthcare

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