Introduction

Children are most vulnerable and at the highest risk of dying during the first 28 days of life with an estimated 2.5 million annual neonatal deaths globally [1,2]. Despite the overall reduction in the number of under-five deaths since the release of the Sustainable Development Goals (SDGs), the proportion of neonatal deaths among all under-five deaths has remained high, accounting for 47% of under-five deaths in 2018. The leading causes of neonatal mortality are preterm birth, intrapartum-related events, and neonatal infections [1].

Several policies and low-cost interventions have been implemented to reduce under-five, infant, and neonatal mortality since the introduction of the Millennium Development Goals, and subsequent SDGs. According to the 2018 Demographic and Health Survey, Zambia’s neonatal mortality rate was 27 deaths per 1,000 live births, accounting for 64% of overall infant mortality [3]. Recent studies have described the leading causes for stillbirth, neonatal, and early childhood deaths in rural Zambia and attribute almost 90% of deaths in the neonatal period to infections, prematurity, and birth asphyxia [4]. Accelerated progress is required to reduce the neonatal mortality rate by greater than 50% to meet the SDG target by 2030 [5]. A three-year roadmap (2013 to 2016) for accelerating the reduction of maternal, newborn, and child mortality was previously developed by the Zambian Ministry of Health in conjunction with other Zambian Ministries, technical workgroups, international and local non-governmental organizations, faith-based organizations, and professional societies [6]. Achieving the 2030 SDG targets as well as aligning with prior roadmaps delineated by the Zambian Ministry of Health rests on the recognition that communities and community-based structures play a critical role in providing care to families, especially those with limited access to health facilities. A deep understanding of community-based structures is required for effective and authentic partnership with communities to improve maternal, neonatal and child survival practices.

Neonatal health is linked with newborn care practices and distinct cultural perceptions of health and illness [7]. Some information is available from qualitative studies on how these cultural beliefs and experience with the healthcare system inform care-seeking behaviors, especially for newborn care practices at the community level [8–11]. Varying by Province, 33–50% of births occur in a health facility in Zambia, highlighting the importance of community perceptions regarding postnatal newborn care [3,12,13]. With the COVID-pandemic, a trend towards more home births has been noted globally and specifically across all provinces in Zambia by the Ministry of Health [14]. Past qualitative research conducted in rural Zambia described how cultural beliefs in aspects of newborn care may be either at odds with—or in some cases aligned with—clinical recommendations for newborns [12,15]. Strategies to improve neonatal survival and reduce neonatal mortality require examining how community perceptions inform care-seeking practices in order to successfully implement outcome-based, culturally accepted health interventions.

Using qualitative data collected between February and April 2010 as part of the Zambia Chlorhexidine Application Trial, Herlihy et al. investigated practices, beliefs, attitudes, and perceptions of umbilical cord care and illness in newborns [10]. Here, we aim to broaden the analysis, beyond cord care, to understand how cultural beliefs influence newborn care behaviors, perception of illness, and care-seeking practices in Zambia’s Southern Province. We aim to contribute to the growing body of knowledge on community perceptions of newborn health, illness, and care behaviors in order to improve programmatic efforts to reduce neonatal mortality in Southern Province, Zambia, and similar settings.

Methods

The Zambia Chlorhexidine Application Trial (ZamCAT) qualitative study was conducted in Southern Province in 2010 to inform the design and procedures for a cluster-randomized controlled trial that compared daily cord cleansing with 4% chlorhexidine with the Zambian Ministry of Health recommended dry cord care practice [16,17]. The aim of the qualitative study was to identify context-specific information to aid the design and implementation of the trial, particularly around newborn care messaging, household visitation in the neonatal period, and acceptable characteristics of data collectors to the community for home visitation. A detailed study protocol, main study outcomes, perceptions of newborn care messaging, and of cord health and illness were previously published [10,16–18].

Focus group discussions (FGDs) and in-depth interviews (IDIs) were conducted to determine knowledge, attitudes, and practices of mothers, traditional birth attendants (TBAs), community members, and facility-based health workers from February to April 2010. Using a semi-structured interview guide, topics discussed included general neonatal care, post-delivery practices, and neonatal umbilical cord care practices. Interviewers met with health facility staff, health committee members, and village leaders to recruit participants from four out of eleven Southern Province districts, including two rural districts (Choma and Monze) and two urban districts (Livingstone and Mazabuka) (Fig 1). FGD inclusion criteria included: breastfeeding mothers (to ensure recent birth) or grandmothers of a child under 5 years of age or traditional birth attendants (TBAs). Breastfeeding mothers and grandmothers were recruited from health facilities in the four districts. TBAs could either be graduates from the recent national training program or informal/untrained TBAs or women who are known to attend home deliveries in their communities. TBAs were identified by local headmen and a snowball method was used to identify other TBAs. Interview settings were chosen away from health facilities and without the presence of health facility or community leaders to encourage openness and reduce reporting or desirability bias. Additional criteria for study site selection and an ethnographic analysis of umbilical cord care can be found in Herlihy et al [10].

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Fig 1. Map of Zambia’s Southern Province highlighting ZamCAT study districts [10].

https://doi.org/10.1371/journal.pone.0282881.g001

Interview guides were piloted with volunteer mothers and grandmothers. Interviewers were recruited based on background experience and were former midwives who previously worked for the government health sector and underwent training in research ethics, qualitative methods, and interviewing techniques. Interview guides were adapted post-piloting and submitted to the respective institutional review boards and ethics committees prior to use. IDIs were conducted with key informants in the community, including community and religious leaders, community health workers (CHWs), neighborhood health committee (NHC) members, health professionals, midwives, traditional healers, and trained and untrained TBAs. Most FGDs were conducted in Tonga, the predominant language in Southern Province. Two FGDs were conducted in another local dialect, Nyanja, in Livingstone District; one FGD was conducted in English with facility-based midwives.

All FGDs and IDIs were audio-recorded, translated (where needed) into English, and uploaded into NVivo software version 9.0 [19]. Four independent reviewers each coded half of the transcripts allowing for double coding of each transcript. Key themes were identified and discrepancies were reconciled during group review. Key themes focused on models of care seeking, belief constructs, and practices; emerging themes were also identified using thematic analysis [20].

Conceptual framework

The conceptual framework (Fig 2) was adapted from Marsh et al., which defined positive outcomes and behaviors for “exemplary newborn care [21].” Despite the numerous logistical and financial barriers that can hinder care-seeking behaviors and access to quality care, the framework describes a pathway that, if implemented well, would result in positive outcomes across four main periods from conception, pregnancy, delivery, and postpartum care. Key behaviors emphasized for newborn health during the postpartum period include optimal nutrition, exclusive breastfeeding, hygiene, clean cord care, thermoregulation, and awareness of other newborn danger signs to ensure health and survival. If circumstances deviate from the optimal health pathway, caregivers must be able to quickly identify danger signs and symptoms of illness. Early recognition of these danger signs is crucial for immediate care-seeking, identified as “the special care” cluster, to return to the optimal care pathway. A key premise of this framework is that one must understand current practices for postpartum newborn care to ensure successful uptake and integration of evidence-based behaviors. Understanding both community norms and individual attitudes and beliefs can contextualize differences in practices and behavior-change modifications for improved newborn care.

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Fig 2. Essential elements, including emphasis on the importance of recognition of and appropriate response to illness, including timely care-seeking, in the pathway to newborn health and survival.

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Results

Participant demographics

A total of 339 women participated in 36 FGDs, with 9 FGDs conducted in each of the four study districts [Tables 1 and 2]. Among the 36 FGDs, 13 were conducted with breastfeeding mothers, 12 with grandmothers who had grandchildren under-5 years of age, 10 with trained and untrained TBAs, and 1 FGD with health facility-based midwives. Of the 42 IDIs conducted, 7 traditional birth attendants, 8 traditional healers, 15 health professionals including midwives and community health workers, and 4 religious leaders were interviewed. The IDIs were distributed across the 4 study districts; 11 IDIs each were conducted in Choma and Monze and 10 were conducted in both Livingstone and Mazabuka.

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Table 1. Focus group discussion (FGD) participant demographic characteristics.

https://doi.org/10.1371/journal.pone.0282881.t001

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Table 2. In-depth interview (IDI) participant demographic characteristics.

https://doi.org/10.1371/journal.pone.0282881.t002

The median age for the IDI respondents (which mainly focused on community members and leaders) was 51 years with participants ranging from 33 to 68 years of age [Table 2]. Complete age data were only available for 24 of the 36 FGD participants; median age was calculated using available data [Table 1]. Participants represented eleven different tribes with 62% of participants (n = 26) belonging to the Tonga tribe. The remaining 38% of participants were from the Ila, Kalunda, Kaonde, Lala, Lozi, Mambwe, Ngoni, Nkoya, and Nyika tribes. Female participants had an average of five children (range: 1–10 children) and male participants had seven children on average (range: 3–13 children).

Discussion

Perceptions of illness and care-seeking behaviors impacted where and from whom families sought care in Southern Province, Zambia for illness prevention and management during the postnatal period. Perception of disease according to the Tonga-speaking people can be traced back to the association of traditional African and Western worlds and perceptions during the colonization period. The Tonga classify diseases of “black people” (bwa jintu) and the diseases of “white people” (bwa jinga). The diseases of the white people are also said to come from God (Leza), or said to be “natural diseases”. Their origins are unknown and do not have any moral aspect, they can be explained by western medicine [22]. While modern health systems can treat perceived “natural diseases”, it is believed that only traditional medicine can treat causes of “black man’s disease” that are usually caused by misbehavior among people [22,23]. As demonstrated in the qualitative research here, participants noted that many of the diseases could emerge from both types of causation. This belief of disease causation provides a fitting explanation to how and why parents seek care for their newborns. Sick newborns are known to deteriorate clinically quickly and suddenly which make any delay in care a priority to identify. While care-seeking for perceived newborn illness with traditional healers may not always lead to a delay in care, it would be important to partner with traditional healers to identify systems to triage and prioritize newborns at risk of acute decompensation. As noted by the study participants, perceptions of illness and cause of illness (e.g. spirits of dead ancestors) and care providers’ ability to identify and treat illnesses during the neonatal period were strongly correlated.

Despite widespread implementation and use of cost-effective intervention packages and decreased under-five mortality, neonatal mortality remains high in many resource-limited settings [24]. While this cannot be pinpointed to one sole cause, several effective interventions have failed after being implemented without recognizing the importance of illness perception, care-seeking behaviors, and the need for behavior change interventions [25–28]. In some cases, “preconceptions, attitudes, choices (or lack thereof) and traditional know-hows” were largely disregarded in the implementation of critical interventions to reduce the burden of neonatal mortality [29,30]. One notable example can be found in a multi-site community-based trial in Benin on scheduled screening and treatment for malaria in pregnancy. Despite having standard operating procedures, community sensitization meetings, and informed consent procedures, various perceptions regarding the role of the placenta in the community led to fears and rumors about the placenta biopsy sampling component of the study. Eventually, “the confluence of socio-political power relations, economic inequality, socio-cultural dynamics, informed consent procedures, and a catalyzing adverse event” led to the decline of the trial in Benin site [31]. Local perceptions are strongly connected to a given community’s norms and values, which may have significant impacts on health system utilization [32].

Some data are available from sub-Saharan Africa on the connection of cultural beliefs and care-seeking behaviors. Evidence exists in the literature indicating that people do not seek care, from traditional or biomedical systems, if those treatments do not meet their needs [33–35]. A mixed-methods study conducted in rural Ghana found that care-seeking is a complex process strongly influenced by health beliefs and identified several barriers to clinically appropriate care-seeking practices. Among barriers identified were a class of illnesses defined as “not-for-hospital”, which were tied to a strong belief in the efficacy of traditional medicine and culturally prescribed actions for locally named illnesses. The study concluded that interventions focusing on symptom recognition would not improve poor care-seeking behavior, since results regarding cultural beliefs and barriers (as well as teaching danger signs) can be best addressed using local terminology [36]. Other qualitative studies commented on family members’ perceptions of newborn care-seeking practices. Results from a multi-site sub-Saharan African qualitative study identified “the need to broaden interventions to engage the wider family in a meaningful way…especially first-time mothers who may be open to new practices” [37]. A qualitative postnatal care acceptability study from rural Uganda found that while most recommended newborn care practices (i.e. exclusive breastfeeding, delayed bathing, danger sign recognition, etc.) were said to be acceptable by both health providers and community members, postnatal care-seeking was poor and not promoted by service providers or through community outreach activities [38]. Improving post-natal care practices thus requires both uptake by community members as well as promotion and outreach by care providers and provision of high quality, respectful care. Approaches to partnership with community leaders and traditional healers ought to be explored in order to integrate the co-existing systems to benefit families and newborn outcomes.

More data are available from South Asia-specific studies on the influence of cultural beliefs on perceptions of newborn illness and related health care practices. Community-based trials conducted in South Asia suggest that newborn care practices can be improved through appropriate behavior change interventions. A qualitative study exploring illness care-seeking for young infants in urban India found that mothers were able to recognize infant illness (diarrhea, fever, cough, labored breathing, and muscle wasting) in a timely fashion. However, the limiting factor was mothers’ difficulty distinguishing between formally and informally trained health care sources; ultimately, they gave preference to local informally trained providers [39]. It should again be noted that families are not solely accountable for these shortcomings as health systems play an important role in promoting recommended care and ensuring positive experiences of care for families. Multiple qualitative studies conducted in Bangladesh reference the need to highlight community awareness on neonatal morbidity and the importance of care-seeking from trained personnel [40,41]. Two learnings from a qualitative study conducted in Sylhet recommended that programs should aim to provide care at home and prioritize making facility-based care more culturally acceptable in neonatal health interventions [40,41]. An implementation research study, conducted in rural Bangladesh to assess caregiver acceptability of World Health Organization (WHO) guidelines for managing possible serious bacterial infections, identified low acceptability among caregivers for referral due to distrust in hospital doctors, inconsistent medicine availability and financial constraints, unless they believed the infants’ illness to be severe. In this case, some providers developed local solutions—such as engaging village doctors in treatment to address organizational barriers and promote treatment adherence [42]. These recommendations are especially relevant to policy makers, with the Ministry of Health or at the sub-national level, since engaging with community leaders to develop culturally appropriate strategies can improve uptake and adherence to behaviors and care-seeking practices to ensure newborn health.

Though the South Asian study results may not be generalizable or deliverable to sub-Saharan African countries, they do reflect the significant influence of cultural beliefs on perceptions of newborn care and the need to address and incorporate cultural beliefs in neonatal care improvement strategies [43]. As noted in the conceptual framework by Marsh et al., community-based interventions are needed to educate women in essential newborn care and birth preparedness, illness recognition, and timely, appropriate care-seeking. Consequently, community mobilization initiatives can empower caregivers and communities to develop strategies to access care that are appropriate within the local context [21]. Home-based neonatal care is an acceptable and feasible intervention to enhance access to skilled healthcare services if barriers exist to seeking facility-based care [29]. It is important to recognize that not all healthcare problems can be addressed at home alone; access to high quality health care for maternal and neonatal care is critical. Health facility staff can engage with community-level health workers, such as CHWs and TBAs, to ensure that parents of newborns have equitable access to healthcare services by facilitating and referring families interested in seeking facility-based care when needed.

Unsurprisingly, these findings are consistent with an analysis using the ZamCAT qualitative dataset by Herlihy et al. that assessed local perceptions of umbilical cord health and illness and the cultural belief system that shapes cord care knowledge, attitudes, and practices from the same ZamCAT qualitative study population [10]. Herlihy et al. highlighted the benefit of integrating cultural practices with biomedical care in Southern Province, Zambia and noted that this blending can create opportunities for a health systems model where policy makers and program designers can find synergistic overlaps between beliefs and health systems that would both result in positive behavior change and satisfy multiple stakeholders [10]. This qualitative study’s results offered extensive guidance in the design of the intervention trial and changes to the community engagement strategy [16].

Findings presented in this analysis may be useful in further understanding common terminology (such as chamutwe, kayengo, and luhumwe) and beliefs around newborn illnesses from the community in Southern Province, Zambia. These findings may be applicable to other Zambian communities as evident by similarities found with the qualitative study conducted in the rural Lufwanyama District of Zambia’s Copperbelt Province assessing community perceptions and management of newborn hypothermia. Capturing local terminology, understanding patterns of care-seeking, and describing perceived sources of disease could improve future intervention studies and care-seeking pathways to optimize research and health system design.

Since the completion of the ZamCAT study in 2013, Zambia has scaled up efforts to meet SDG goals to reduce neonatal mortality. One notable endeavor included expanding an integrated community case management (iCCM) program strategy with screening and referral for sick newborns [44,45]. However, coverage and use of these interventions remains low, especially in rural communities where the interventions are most needed. Before 2018, 81–82% of deliveries took place in a health facility or were attended by a skilled health provider, but only 65% of these deliveries had a postnatal care visit within two days of delivery, which is the recommendation from Zambian Ministry of Health [3,46]. The uptake of facility-based birth services decreased further during the COVID-19 pandemic. To address this misalignment of guideline and coverage, the Zambian Ministry of Health launched the Essential Newborn Care Training Package and Newborn Protocols to assist local stakeholders using a multipronged approach to reducing neonatal mortality through training, capacity building, and provision of medical supplies in various districts [45]. This effort was later reflected through WHO policy recommendations to provide early neonatal care training for community-based agents, such as community health workers and TBAs, to greatly increase the chances for newborn survival [45].

Conclusion

This qualitative study demonstrates the connection between cultural beliefs and their important role in the perception of newborn illness, newborn care behaviors, and care-seeking practices in Zambia’s Southern Province. These results were applied to inform the design and methods for the ZamCAT intervention trial. Further, these findings can be used to strategically inform future programs and policies addressing causes of neonatal mortality in Zambia, whether being implemented by a regional, national, or global organization. These efforts will be especially relevant in Zambian communities that share similar perceptions regarding the role of cultural beliefs and newborn care-seeking to the Tonga in Southern Province. The Zambian government remains committed to achieving the SDGs by 2030, and efforts are necessary to reduce the contribution of neonatal mortality to the under-five mortality rate. Stakeholders could use this information on cultural beliefs and their corresponding influence on newborn care-seeking practices to contextualize existing best practices and improve uptake of strategies that reduce the burden of illness and preventable mortality in the newborn period.

Supporting information

Acknowledgments

The authors wish to acknowledge the Zambian Centre for Applied Health Research and Development (ZCAHRD), the Southern Province Medical Office, and the Zambian Ministry of Health for their kind assistance. We would also like to thank the mothers, their newborns, and their families for their participation and dedication to the study. Our co-author, Ms. Bernadine Sooli, passed away before the submission of the final version of this manuscript; we are grateful to have worked with her in the ZamCAT study. Dr. Davidson Hamer, Study PI, and Dr. Katherine Semrau, the corresponding author, accept responsibility for the integrity and validity of the data collected and analyzed.