Study design, setting and study population

This qualitative study employed a phenomenological design using in-depth interviews (IDIs) and focus group discussions (FGDs) with health workers involved in the care of pregnant women with Sickle cell disease at Kawempe National Referral Hospital (KNRH) and Mbale Regional Referral Hospital (MRRH) from 8^th of January to March 30th 2025. KNRH is a tertiary health facility in Kampala, the Capital city of Uganda. KNRH provides referral care for women in its catchment area and those referred from across Uganda in need of specialized care, including those with SCD. The KNRH annual report for 2023 showed that an estimated number of about 140 pregnant women with SCD sought different services in the hospital including ANC, labor and delivery.

MRRH, a tertiary facility located 245 km East of Kampala, serves 16 districts with a catchment population of more than 4.5 million people and receives an estimate of two to five new cases of SCD weekly in the SCD clinic which is for both pregnant women and the general population.

Participants included intern doctors, midwives, residents in Obstetrics and Gynaecology, medical officers, anesthesiologists, and obstetricians. Purposive sampling was used to ensure representation across cadres and units that provide care to women with SCD, including antenatal clinics (ANC), intensive care units (ICU), obstetric high dependency unit (HDU), labor wards and theatres. The sample size was determined by data saturation.

Eligibility criteria

Health professionals directly involved in the care of pregnant women with SCD and with at least six months of relevant experience were included. All participants provided written informed consent.

Ethical standards and approvals

The study obtained approvals from the Institutional Review Board (IRB) of Makerere University, School of Medicine Ethical Review Board, approval number Mak-SOMREC-2023–805, as well as approvals from the Uganda National Council for Science and Technology (UNCST), number HS5315ES and administrative clearance from both Kawempe National Referral Hospital and Mbale Regional Referral Hospital.

The study complied with ethical standards as outlined in the Belmont Report and the Declaration of Helsinki. Each participant also provided informed written consent and signed a consent form before participating in the study. Minors below the age of 18 years were not included in the study. Each participant was given a token of appreciation for time compensation worth twenty thousand (20,000) Ugandan Shillings after the interviews and/or FGDs as approved by the IRB. To ensure confidentiality of the participants, during the recording, personal identifiers were not included and after the recordings were stored by each researcher independently with limited access. The recordings were then shared with the Principal Investigator (PI) for transcription. The PI ensured that all transcripts had no identifiers and were stored in the research computer which is protected by password with restricted access. No participant declined to participate in the study.

Study procedure and sampling

The study was conducted in a phased approach with a total number of 34 participants from 14 IDIs and four FGDs. The FGDs were composed of six members per group, at KNRH and four members per group at MRRH. The difference in the number of participants in both the IDIs and FGDs were due to the difference in staffing norms between the two hospitals in terms of numbers and cadres. While KNRH has an anaesthesiologist whose experience and view are critical for these vulnerable population, MRRH lacks one. On the other hand, whereas MRRH has Medical Officers who are also primary care givers, KNRH structure does not include this category. The purposive sampling was therefore to ensure that all cadres were captured in the interviews and then some involved in the FGDs. Both facilities lack haematologists who are critical for the management of patients with SCD. IDIs were conducted first to capture individual experiences, followed by FGDs to explore shared or divergent perspectives. Individual interviews lasted 45–60 minutes, took place in private in outpatient rooms. The FGDs took place in the staff boardroom and lasted 1.5 to 2 hours. The interviews were conducted by two research assistants trained in qualitative data collection. Sessions were audio-recorded, transcribed and de-identified to remove confidential information. A reflective journal and field notes were also used by the research team, adding rigour to the qualitative inquiry. Each investigator recorded her reactions, assumptions, expectations, and biases about the research process. The field notes also provided additional data for the analysis. To minimize power imbalances and social desirability bias, the PI did not conduct interviews with healthcare providers, as she was known to them in a clinical capacity. Instead, interviews were conducted by an independent qualitative interviewer and supported by research coordinators trained in qualitative research methods. Reflexivity was addressed through repeated reading of transcripts, team-based discussions of emerging findings, and engagement with other qualitative researchers to critically examine interpretations and enhance analytic rigor.

Data management and analysis

Data collection and analysis occurred concurrently, with emerging themes informing subsequent discussions. The data was collected in a phased approach with IDIs where we had IDIs being done first with ensure each cadre was represented and achieved saturation after 14 IDIs. Following that, the team then embarked on FGDs to obtain any group ideas or divergent views that may not have emerged from the IDIs and saturation was achieved after four FGDs. The transcripts were reviewed by the PI, study coordinator and an independent study analyst. Coding was done manually by a single coder with review by the PI and a qualitative data specialist. The coding was inductive as there were no preset themes. The codes were then aligned into themes and sub-themes guided by the behavioural ecological framework (BEF) for examining healthcare access and navigation [6], complemented by the World Health Organisation’s health system building blocks. The BEF provides a comprehensive lens to examine healthcare access, particularly in the context of managing SCD. This multi-level framework allows for the exploration of individual, community, policy, and health system factors that influence healthcare access and outcomes. Themes and sub-themes that emerged during data collection were refined following multiple readings of the interview transcripts, enabling the identification and grouping of data into the different levels of the framework.

Participant demographics

A total of 34 healthcare providers participated in this study, 12 from Mbale Regional Referral Hospital and 22 from Kawempe National Referral Hospital. The demographic characteristics of the participants are summarised in Table 1.

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Table 1. Demographic characteristics of the participants from Kawempe and Mbale RRHs.

https://doi.org/10.1371/journal.pone.0355018.t001

Thematic analysis

This section presents findings structured around four primary themes: initial reactions when faced with a pregnant woman with SCD, social, cultural and religious issues affecting care, challenges within the healthcare system and strategies to improve care. Each theme is further divided into subthemes, with a focus on the corresponding levels of the BEF as shown in Table 2.

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Table 2. Themes and subthemes corresponding with different levels of the Behavioural Ecological Framework examining healthcare access and navigation.

https://doi.org/10.1371/journal.pone.0355018.t002

Individual level

Community level

Individual level

The first theme, initial reactions, reveals varying levels of knowledge and awareness among healthcare providers regarding the disease. This aligns with previous studies indicating that healthcare professionals often possess inconsistent knowledge about SCD, which can significantly impact patient care [7]. The subtheme of perception of risks is particularly pertinent, as providers’ understanding of the disease's complications can influence their clinical decisions and patient outcomes. A lack of awareness regarding the specific risks associated with SCD in pregnancy may lead to inadequate monitoring and management, potentially jeopardising maternal and fetal health [8,9].

Furthermore, the Lancet Haematology Commission paper on SCD (2024) emphasises the importance of education and training for healthcare providers to improve outcomes for patients with SCD [10]. This highlights a critical gap in the Ugandan healthcare system, where ongoing professional development and training in SCD management are essential. The variability in knowledge and awareness among providers underscores the need for standardised curricula and training programmes that address the complexities of SCD, particularly in the context of pregnancy.

Community level

The healthcare providers’ perspectives and experiences in managing pregnant women with Sickle Cell Disease (SCD), focusing on the theme of community-level influences, highlighted the profound role of cultural beliefs, religious practices, social norms, and social support systems in shaping maternal healthcare experiences and outcomes among women with SCD.

Cultural influences, religious and social influences

Negative cultural beliefs and traditional understandings of illness emerged as critical barriers to effective care. Healthcare providers reported that in many communities, SCD is still poorly understood and often attributed to supernatural causes or ancestral curses. This aligns with previous findings in Nigeria, where SCD is frequently interpreted through traditional lenses, affecting families’ care-seeking behaviour [11]. Cultural stigma can delay access to antenatal services, as some families may hide affected individuals or prioritise traditional remedies over biomedical care. Furthermore, certain communities hold fatalistic views about SCD, seeing it as a “death sentence” and discouraging affected women from becoming pregnant. These beliefs reinforce discriminatory attitudes and reduce community support for reproductive health services, contributing to the marginalisation of women with SCD during pregnancy. Similar observations have been documented in Nigeria, where socio-cultural myths deter appropriate health-seeking for women with hereditary conditions [12].

Religion played a dual role in shaping perceptions of SCD and maternal care. On one hand, religious leaders were often trusted sources of guidance and could encourage acceptance and support for pregnant women with SCD. On the other hand, some religious doctrines promoted the rejection of biomedical interventions in favour of faith healing. These findings echo those of Cotton et al [13], who found that adolescents with SCD often relied on religious explanations and spiritual interventions as coping mechanisms for complications of SCD.

In Uganda, where this study was conducted, religious affiliation is widespread, and spiritual interpretations of illness often coexist with biomedical views. Participants described instances where religious leaders influenced pregnant women’s decisions, including discouraging the use of contraception or discouraging antenatal visits in favour of faith-based interventions. While religious beliefs can foster hope and resilience, they may also conflict with evidence-based medical care, especially when not integrated into public health messaging

Social stigma surrounding SCD was widely reported. Health workers noted that affected women are often labelled as weak or unfit for motherhood, leading to isolation and diminished self-worth. This stigma influences marital prospects, family support, and women's willingness to disclose their condition, as observed in other contexts [14].

The study found that stigma extends to the health system, where healthcare providers, particularly in under-resourced settings, may hold misconceptions about SCD or show less empathy due to the perceived burden of care. This internalised bias within health facilities reinforces community-level stigma, ultimately affecting the quality of care delivered to pregnant women with SCD.

Despite these challenges, social support especially from family members and organised patient support groups, emerged as a protective factor. Pregnant women who had partners, families, or peer support groups were more likely to adhere to care regimens and attend antenatal appointments. This is consistent with previous research showing that family and community support can mitigate the psychological and physical burdens of chronic illness during pregnancy [15]. Participants also emphasised the importance of health education targeting both men and women in the community, noting that informed spouses and families were more likely to offer support. Encouragingly, in some settings, community health workers have played a pivotal role in bridging gaps between health facilities and families, increasing health literacy, and reducing stigma [15].

The findings underscore the complex interplay between cultural, religious, and social contexts in the management of pregnant women with SCD. Effective interventions must therefore be context-sensitive, engaging not just the health system but also community leaders, religious institutions, and social networks to promote awareness, reduce stigma, and improve outcomes. Integrating community-based health education with culturally competent care will be essential to addressing the multifaceted challenges experienced by this vulnerable population.

Policy and healthcare delivery challenges

The need for evidence-based guidelines is evident, as existing literature supports the notion that standardised protocols can enhance the quality of care for patients with chronic diseases, including SCD [16,17]. The establishment of clinical guidelines that are specifically tailored to the needs of pregnant women with SCD could facilitate more consistent and effective management, ultimately improving maternal and fetal outcomes [18–20]. The absence of such guidelines in Uganda highlights a critical area for intervention, as the development and dissemination of evidence-based protocols would provide a framework for healthcare providers to deliver care that is both effective and aligned with best practices. The third theme, challenges in healthcare delivery, encompasses various subthemes that reflect the systemic issues faced by health providers. Resource limitations, including inadequate staffing, insufficient medical supplies, and lack of access to essential diagnostic tools, were frequently cited as barriers to effective care. This is consistent with findings from other studies that have identified similar challenges in low-resource settings, where healthcare providers often struggle to deliver quality care due to systemic constraints [17]. Referral challenges also emerged as a significant concern, with providers noting difficulties in accessing specialised care for patients with SCD. This is particularly relevant in the context of Uganda, where geographical barriers and limited healthcare infrastructure can impede timely referrals [21,22]. The importance of interdisciplinary collaborations in overcoming these challenges cannot be overstated. Collaborative approaches that involve multiple healthcare disciplines can enhance the management of complex cases, ensuring that patients receive comprehensive care that addresses both their medical and psychosocial needs [2,23]. Moreover, high patient loads and emotional and psychological distress among both patients and providers were highlighted as critical challenges. The burden of managing a chronic illness like SCD, particularly during pregnancy, can lead to significant psychological strain, which may further complicate care delivery [24]. Addressing the emotional and psychological needs of both patients and providers is essential for improving overall healthcare outcomes and fostering a supportive environment for care [17,24])] Advocacy for resources is another vital strategy, as increased funding and support for SCD programmes can help address the systemic challenges faced by healthcare providers and patients alike [16,25].

Study strengths and limitations

The research team actively participates in the management of patients with SCD at the respective study sites and therefore, their experiences, beliefs and understanding might influence the study in certain aspects. Thus, to ensure rigor and validity, the team triangulated various data sources and methods (e.g., interviews, discussions, and reflective journals), enhancing the credibility of the study findings. Additionally, member checking and engaging participants in the validation of study findings were done to ensure that their perspectives were accurately represented.

This study was conducted at MRRH and KNRH, two high-volume public referral facilities that provide care for pregnant women with sickle cell disease in eastern and central Uganda. These facilities serve diverse urban, peri-urban, and rural populations and reflect typical public-sector referral settings in the region. The findings are applicable to similar resource-limited referral hospitals characterized by high patient volumes, constrained staffing, and limited access to specialized diagnostics. However, the study was conducted exclusively in public facilities where services are provided at no or minimal cost, and experiences may differ in private or faith-based health facilities.

Despite these limitations, the detailed contextual reporting and methodological rigor support the transferability of findings to comparable settings managing pregnancy in women with sickle cell disease.