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. 2025 Jun 4;5(6):e0004638. doi: 10.1371/journal.pgph.0004638

Organizational models and patient-reported outcomes for palliative care across five tertiary hospitals in Nigeria: An environmental scan

Ann Abiola Ogbenna 1,2,*, Matthew Caputo 3, Tonia C Onyeka 4,5, Debora O Ohanete 1, Lyra S Johnson 6, Nadia A Sam-Agudu 7,8,9, Chisom Obiezu-Umeh 10, Babatunde Akodu 11,12, Denise Drane 13, Charlesnika T Evans 14, Mukaila O Akinwale 15, Geraldine U Ndukwu 16, Israel K Kolawole 17, Saheed A Ayilara 18, Gracia K Eke 19, Adeseye M Akinsete 20, Adeboye Ogunseitan 21, Ashti Doobay-Persaud 3,22
Editor: Sakib Burza23
PMCID: PMC12136337  PMID: 40465678

Abstract

Palliative care (PC) is an essential, effective, and affordable component of health care. Global need is rising, with the greatest burden in low-and-middle-income countries. This is especially true in Nigeria where the need is growing rapidly, as are PC services; however, current organizational models have not yet been examined. This was a cross-sectional, descriptive study of five PC sites at tertiary hospitals in four of Nigeria’s six geopolitical zones. Surveys, informed by a Centre for Palliative Care, Nigeria (CPCN) needs assessment checklist and the Consolidated Framework for Implementation Research (CFIR), were administered at each site to leadership, frontline workers, patients, and caregivers. Surveys varied by participant group and inquired about organizational models and personal experiences of both providers and recipients of care. Across five sites, there was a total of 282 survey respondents: five leaders, nine frontline workers, 132 patients, and 136 caregivers. The most common diagnoses of PC patients were cancer, sickle cell disease, and HIV. Most sites reported sub-optimal administrative support (80%), hospital management support (60%), and building space (60%). Leadership responses highlighted variations in PC training requirements and opportunities. Frontline workers desired additional training, sponsorship, and governmental support. Most patients and their caregivers reported satisfaction with PC, though high levels of worry and hopelessness were reported. Increased organizational support appears necessary to facilitate improvements in administrative resources, staffing, and training. Emotional and spiritual wellbeing likely require prioritization when designing palliative care delivery services in Nigeria. Further research is needed to refine current services and inform implementation efforts.

Introduction

In 2020, global estimates indicated that more than 61 million individuals would benefit from palliative care (PC), including those in their final year of life [1]. This number is expected to rise between 2020 and 2040 [2], which is particularly concerning for low- and middle-income countries (LMICs) where 80% of the global PC burden lies [35]. LMICs, particularly in the regions across Africa, often face the dual challenge of increasing burden of non-communicable diseases like cancer, diabetes, cardiovascular diseases and chronic kidney disease, and limited health infrastructure to treat them [6]. The related symptomatology due to this increase in non-communicable diseases underscores a critical need for comprehensive strategies to integrate PC into healthcare systems in these regions [7].

PC alleviates suffering for patients with life-limiting illnesses and their caregivers by reducing physical, psychosocial, and spiritual symptoms at any stage of their condition [8]. The WHO asserts that PC is a human right and calls for its inclusion in universal health coverage, recognizing the need for global efforts to improve PC services and build workforce capacity in resource-constrained settings [9].

In recent years, there has been an expansion of PC services across Africa with 42% of countries having a focal person in their ministry designated for PC [10], 54% having a national PC association, and over 1000 services available across the continent [10,11]. However, growth has been uneven with regional concentrations in East and Southern Africa, and services [12] remain accessible to less than 5% [12] of the nearly 9.7 million people that need it across the African continent [3,13]. This has left significant care gaps in West African countries like Nigeria where the need for PC is critical. It is estimated [14]. that 29% of the nearly 3 million annual deaths [15] across Nigeria are due to non-communicable diseases such as cardiovascular diseases and cancers, and over 50,000 are due to HIV [16]. For cancer patients specifically, most present in advanced stages, report high levels of pain [17] and have little hope for a cure [18].

Unified efforts to promote provision of PC in Nigeria include the establishment of the Hospice and Palliative Care Association of Nigeria (HPCAN) in 2007, which has facilitated the establishment of eight PC centres at tertiary health institutions and over 20 emerging PC sites as of 2016. In 2021, the Federal Ministry of Health published a National Policy and Strategic Plan for Hospice and Palliative Care [19] with the goal of institutionalizing PC across all levels of the health system. While the increasing number of services is recognized, there are few comprehensive studies that describe operational characteristics of these PC sites, limiting our understanding of the current state of PC in Nigeria and impeding efforts to improve, enhance and expand service [20]. Specifically, transformational change in PC access and delivery requires greater organizational knowledge relating to infrastructure, workforce, service delivery, and satisfaction of care [12,21]. Through an environmental scan, our study aims to describe the current models of PC in select tertiary hospitals across Nigeria and examine patient-centered outcomes under these models of care.

Methods

Ethics statement

Ethical approval for this study was obtained from the National Human Research Ethics Committee of Nigeria (NHREC) [Approval No: NHREC/01/01/2007] and from the institutional Health Research Ethics Committees (HREC) of participating institutions. Verbal informed consent was obtained from all participants after a clear explanation of the study’s purpose, procedures, potential risks, and benefits. The use of verbal consent was approved by the ethics committees due to the minimal risk nature of the study and the cultural acceptability of verbal agreements in the study context. No name was recorded. All information gathered was confidential and strictly used for academic purposes only. Access to data obtained was restricted to the principal investigator and delegated persons. Participation in the study was entirely voluntary and participants were free to withdraw from the study at any time with no implication to respondents’ care or care of their loved ones. No financial responsibility was borne by the participants.

Study design

This was a cross-sectional, descriptive study of select PC sites at tertiary hospitals in four (North-Central, South-West, South-East, and South-South) of Nigeria’s six geopolitical zones. The recruited sites belonged to a consortium formed to design and implement a series of virtual PC training sessions for providers in 2021 [22,23]. These five sites were located in distinct Nigerian cities (Enugu, Ilorin, Lagos, Port Harcourt, and Abeokuta). REDCap surveys were administered in PC units at each site from February to April 2023 to assess existing organizational models and patient-centered outcomes.

Study population

Unique surveys were administered to four groups at each site: leadership, frontline workers, patients, and caregivers. Leaders were defined as administrators or physicians heading the PC units at each site. Frontline workers were defined as physicians, nurses, and social workers working in the PC units. Patients were defined as individuals actively receiving PC services, and caregivers were defined as friends or family who supported the patients. All participants were 18 years or older. Recruitment of participants started on the 15th of February2023 and ended on the 13th of April 2023

Surveys

Leadership and frontline worker surveys included checkbox, multiple choice, and free-response questions. Leadership surveys aimed to capture information about PC infrastructure, operations, staffing, training, and patient characteristics. Frontline worker surveys asked about prior PC training, areas where more training was desired, and two open-ended questions: 1) “What do you expect from a good palliative care team?”, and 2) “Is there anything else you would like to communicate about this subject of palliative care?” The surveys were informed by a needs assessment for the establishment of PC developed by the Centre for Palliative Care in Nigeria (S1 Text) and the Consolidated Framework for Implementation Research (CFIR) [24]. CFIR is a widely cited implementation research framework that helps to identify barriers and facilitators to effective implementation through five domains (Innovation, Outer Setting, Inner Setting, Individuals, and Implementation Process) and 39 underlying constructs [25]. In the present study, CFIR was employed to 1) construct and prioritize survey questions, and 2) organize the questionnaire, in order to identify determinants of PC implementation in the Nigerian setting. Shortly following the development of our surveys in 2022, CFIR 2.0 was published with revised domains and constructs [26]. We considered the updated framework during analysis.

Patient and caregiver surveys aimed to reflect the quality of PC services through assessing patient-centered outcomes in the 3 days prior to survey collection. The patient surveys (7 items) and caregiver surveys (3 items) contained 5-point Likert scale questions from the African Palliative Outcome Scale, a validated measure developed by the African Palliative Care Association [27,28]. Clinical history of symptomatology and impact of PC on its outcome was assessed through the African Palliative Outcome scale. All participants were above the age of 18 years. A proportionate sampling was used to determine target sample sizes at each site based on the approximate number of active patients at each site. Final samples per site ranged from 13 to 53 patients and 13–53 caregivers. A convenience sampling technique was used, and none of the participants declined to participate.

A summary of the surveys can be found in -S2 Text.

Data collection, management, and analysis

All surveys were designed and administered via REDCap from February to April 2023. A research assistant was recruited from the PC department at each site and trained to administer surveys online through a QR code or URL. Translation and/or verbal administration of the surveys were provided in Yoruba and Igbo (the dominant languages in the site locations) for patients and caregivers who did not speak English or were unable to read. Instruments were not pre-translated ahead of time; however, research assistants were selected from PC care staff who were accustomed to translating or discussing issues of PC with patients in their local languages.

Data were analyzed using descriptive statistics, including counts (proportions) and medians (with min-max ranges). Staff-to-patient ratios for each staff cadre were calculated at each site by dividing the number of staff members by the reported patients per week. Patient and caregiver responses to Likert questions were weighted so that each site, regardless of recruitment size, contributed to the aggregate results equally. Mean (SD) ratings were calculated by site, and ANOVA tests for equal means were performed for each question.

Two coders conducted a rapid qualitative review of frontline workers’ open-ended responses.. Representative quotes were selected to reflect summarized consensus responses that had been organized according to CFIR 2.0 domains and specific constructs. Statistical analyses were performed in R version 4.3.1 [29], with visualizations generated with the sjPlot package and Microsoft Excel.

Results

There was a total of 282 survey respondents: five leaders, nine frontline workers, 132 patients, and 136 caregivers. A breakdown of participants by site is shown in Table 1.

Table 1. Survey respondents by site.

Leaders Frontline Workers Patients Caregivers Total
Site 1 1 3 13 15 32
Site 2 1 1 13 13 28
Site 3 1 3 13 14 31
Site 4 1 1 40 41 83
Site 5 1 1 53 53 108
Total 5 9 132 136 282

Leadership surveys

Of the surveyed leaders, five (100%) reported providing outpatient services, three (60%) reported providing inpatient services that were consultative or primarily for PC admission, and three (60%) reported providing inpatient hospice care. Characteristics of site resources, capacity, and operations can be found in Table 2. All leaders reported existing data collection procedures for patient outcomes and research, while four (80%) reported these for administrative reporting and quality improvement.

Table 2. Site settings, operations, resources, and support.

Characteristic Response or Count Median (Min-Max Range) or Count (%)
Site 1 Site 2 Site 3 Site 4 Site 5 Total
Year site established 2008 (2001–2012)
Unit co-located with the main hospital center Yes Yes Yes Yes Yes 5 (100%)
Stand-alone unit Yes Yes Yes Yes Yes 5 (100%)
Designated PC wards No No No Yes No 1 (20%)
Have a room designated for:
 PC pharmacy Yes No No No No 1 (20%)
 PC medical records Yes No No Yes Yes 3 (60%)
# PC consulting rooms 1 2 2 1 4 2 (1–4)
# PC treatment rooms 1 1 1 1 1 1 (1–1)
Capacity of PC waiting room 4 50 5 20 15 20 (4–50)
Housing system for patients’ relatives No No No No No 0 (0%)
Have the following tools/resources:
 Enrollment cards Yes Yes Yes Yes Yes 5 (100%)
 Tablets/computers No No No Yes No 1 (20%)
 PC appointment system Yes No Yes Yes No 3 (60%)
Palliative care services offered
 Inpatient services Yes Yes Yes Yes Yes 5 (100%)
 Outpatient services Yes Yes Yes Yes Yes 5 (100%)
 Home-based services Yes Yes Yes Yes Yes 5 (100%)
For profit No No No Yes No 1 (20%)
Sponsored/Major donor No No No No No 0 (0%)
Report adequate PC space or building No Yes No Yes No 2 (40%)
Feel well supported by hospital Disagree Agree Neutral Neutral Agree
Feel they receive adequate administrative support Neutral Agree Neutral Neutral Neutral

A stand-alone unit implies the PC service is provided as an independent functional unit within the hospital. Designated PC wards imply that the wards are designated only for patients with PC needs. Inpatient PC services are consultative services, in which the patient is admitted by his or her primary clinician, who now refers to the PC unit for review or to co-manage, while a PC admission is when the patient is admitted primarily by the PC physician for primarily PC.

All PC sites were established between the years 2001 and 2012. The distribution of staffing at each site varied and is visualized in “Fig 1”.

Fig 1. Staffing composition and patient volume across five clinical sites.

Fig 1

The chart compares the average number of patients per week (orange bars labeled “PT”) and the total staff composition (stacked bars labeled “Staff”) across five clinical sites. Staff are categorized by professional roles: nurses (yellow), physicians (light green), social workers (brown), pharmacists (mustard yellow), and other personnel (dark green).

Other identified staff included physiotherapists, clergy, and administrative staff. All sites reported treating both adult and pediatric patients, with the most common illnesses being cancer, sickle cell disease, and HIV. Leaders reported receiving the most referrals from the following departments: Surgery; Radio-Oncology; Oncology; Paediatrics; Gynaecology; Ear, Nose and Throat; and Internal Medicine (Table 3).

Table 3. Site staffing and patient census.

Characteristic Response or Count Median (Min-Max Range) or Count (%)
Site 1 Site 2 Site 3 Site 4 Site 5 Total
No. of outpatient clinic days per week 1 5 1 2 7 2 (1–7)
Patients per week 4-7 15 4 20 4-6 5.5 (4–20)
Referrals per week 4-6 4-6 2-3 7+ 4-6 5 (2–7+)
Total PC staff per site: 10 9 13 25 18 13 (9–25)
 Nurses 4 4 3 2 5 4 (2–6)
 Physicians 3 2 4 4 6 4 (2–6)
 Social Workers 1 2 3 5 1 2 (1–5)
 Pharmacists 1 1 1 3 0 1 (0–3)
 Other 1 0 2 11 6 2 (0–11)
Other staff specified Physio-therapist Physio-therapist Clergy, Health Assistant Did not specify Medical Records, Administrative Staff
Treat Both Adults and Children Yes Yes Yes Yes Yes 5 (100%)
Most common adult patients Cancer, HIV Cancer (breast, prostate, liver) Geriatric Cancer Cancer, HIV, Sickle Cell Cancer (breast, prostate, cervical)
Most common pediatric patients Cancer, Sickle Cell, HIV Burkitts lymphoma, retino-blastoma, sickle cell Cancer, Sickle Cell, HIV Cancer, Sickle Cell, end stage organ dx Sickle cell, Nephroblastoma, lymphoma

All sites reported having PC seminars for their staff, with three (60%) having them weekly and two (40%) having the semi-annually or less often. One site (20%) reported that all staff members had some type of formal training in PC while the 4 other sites (80%) had some staff with formal training and others with informal training. Of the five leaders, three (60%) reported plans for certificate training and four (80%) reported plans for conference attendance.

Frontline worker surveys

Of the nine frontline workers surveyed, five (56%) reported having PC training ever, including two (22%) that were trained in the past two years. When asked in which areas of PC they felt they needed more training (check all that apply), seven (78%) indicated advance care directives, five (56%) indicated communicating bad news, five (56%) indicated pain management, five (56%) indicated symptom management and three (33%) indicated assessing the goal of care.

Many opinions from providers emerged surrounding the qualities of an effective PC team and the state of PC in Nigeria (Table 4). Frontline workers highlighted the collaborative and multidisciplinary nature of the PC team and emphasized the importance of honesty, empathy, and communication skills. One respondent described PC as “still in infancy” in Nigeria, and multiple respondents expressed a need to spread awareness and advocate for this type of care. Frontline workers also indicated a need for additional training, sponsorship, and governmental support.

Table 4. Frontline worker representative quotes.

Frontline Worker Quote Summary Consensus Response CFIR Domain: Construct(s)
“A good Palliative Care team should be multidisciplinary comprising of the relevant health care workers and religious leaders. The approach should be holistic, taking care of the total man” PC teams should be multidisciplinary, including religious leaders, to provide holistic care Inner Setting: Work Infrastructure, Culture, Recipient-Centeredness
Implementation Process: Teaming
“They [PC team] are to advocate for them, Have good communication skill and work together to achieve the set goals for the patients. They ought to be honest and trusted.” Members of PC teams should work together to achieve the goals set for the patients. They should be honest, trusted, and have effective communication skills. The PC team should be advocates for the patients. Inner Setting: Recipient-Centeredness, Communication
They [PC team] should be very sympathetic and emphatic towards those in pain. Showing love, support and care to them. Always available to relieve someone in pain and family. The PC team should be sympathetic and empathetic. They should show love, support, and care to the patient. Whenever needed, the PC team should provide relief for both patients and their family members. Inner Setting: Recipient-Centeredness
“Palliative Care is still in infancy in Nigeria. Creation of awareness, education and training of health care workers who are interested in the field should be encouraged.” PC is relatively new to Nigeria. There is a need to spread awareness of PC among healthcare workers in Nigeria. Education and training should be encouraged for healthcare workers interested in the field. Outer Setting: Local Attitudes
Inner Setting: Access to Knowledge and Information
“Advocacy, Policy making and Implementation of palliative care should start from government. Education and Training of personnel to advanced level is also germane.” Nigerian PC providers believe their government should make efforts to advocate for PC, include it in policy, and promote implementation. There is a need for advanced education and training for PC. Outer Setting: Policies and Laws
Inner Setting: Tension for Change, Relative Priority
Individuals Involved: capacity building

Patient and caregiver outcomes

The following percentages reflect African Palliative Outcome Scale responses of 4 or 5 on the 5-point Likert scale with equal weighting by site “Fig 2”.

Fig 2. Weighted patient-reported outcomes from all clinical sites using the Palliative Outcome Scale (POS).

Fig 2

Responses from 132 patients were aggregated across seven POS items assessing physical, psychological, and emotional well-being over the previous three days. Bars show the distribution of responses rated from 1 to 5. Items cover pain (POS 1), other symptoms (POS 2), worry (POS 3), ability to share feelings (POS 4), sense of life being worthwhile (POS 5), feeling at peace (POS 6), and receiving advice (POS 7). The table below the chart explains each POS item and anchors for Ratings 1 and 5.

On average, sites found that 21% of their patients reported high levels of pain (POS 1) “Fig 2”, 9% were highly affected by other symptoms (POS 2) “Fig 2”, and 31% were highly worried about their illness (POS 3). Nearly 68% of patients reported being able to share their feelings freely (POS 4) “Fig 2”, and 75% had enough advice to plan for the future (POS 7) “Fig 2”, although only 38% felt life was worthwhile (POS 5) “Fig 2”, and 44% felt at peace (POS 6) “Fig 2”,. On average, 40% of the caregivers reported high levels of worry about the patient’s illness (POS 10) “Fig 3”.

Fig 3. Weighted caregiver ratings of Patient-Oriented Scale (POS) items across all sites (N =  136).

Fig 3

The figure displays the distribution of caregiver responses (ratings 1–5) for three key POS items: information provided (POS 8), confidence in caregiving (POS 9), and worry about the patient (POS 10). Percentages indicate the proportion of caregivers selecting each rating category, with higher ratings (e.g., 5) reflecting more positive outcomes. Data are presented as weighted aggregates from all participating sites.

About 75% of caregivers felt that they had been given sufficient information (POS 8) and felt confident caring for the patient (POS 9) “Fig 3”. ANOVA tests revealed that at least one site’s average rating differed significantly from the others for POS 2 (p = .001), POS 4 (p = .003), POS 7 (p < .001), and POS 9 (p < .001) (S3 Text).

Discussion

PC in Nigeria has been slowly evolving, and it is important to characterize the state and scope of services to understand what is needed for scale up and improved impact. Key findings from this study include multidisciplinary approaches to PC management despite challenges with administrative support, funding, staffing, and training. Providers emphasized the importance of providing holistic care with empathy and indicated the need to advocate for PC scale-up in the Nigerian health system. Patient-reported outcomes highlight the need to improve services for pain management as well as emotional and spiritual wellbeing.

Nurses, physicians, and social workers staffed each unit and reflected the hospital consultative team model, which is the predominant model for PC delivery in the United States [30]. In Nigeria, health staffing shortages have been worsened by the intensification of the ‘Japa syndrome’ that has seen nurses, physicians and other healthcare workers migrate to greener pastures for enhanced compensation, upgraded working conditions, and progression in career, this may be a potential barrier to PC delivery [30,31].

All but one site (which had the highest average pain rating) reported having a pharmacist on staff for their PC patients, which was a positive finding as accessibility of opioids and an inadequate prescribing workforce are major barriers to PC provision in Africa [32,33]. This may explain why most patients in our study reported neutral or favorable responses when asked if they had recently been in pain or had experienced other affective symptoms, which differs from a previous finding that pain was the most poorly rated item on the African Palliative Outcome Scale and most frequent complaint across many studies [32]. This may be attributed to the presence of pharmacists and likely consequential availability of opioids [34] at all but one of the included sites. However, since our surveys did not specifically ask about access to analgesics, further inquiry is needed. Additionally, while pain ratings were lower than expected, the finding that over 20% of patients on average reported high levels of pain (4 or 5 out of 5) in their last 3 days of care warrants further investigation into root causes for poor pain control, including access to pain medicine, use of opioids, patient communication of pain, prescribing practices, and utilization of physical therapy.

Court et al.’s systematic review of PC integration in Africa emphasized that adequate training within sufficiently sized staff is a significant facilitator of PC integration [35]. In our limited sample size of nine frontline workers, about half had some type of PC training, while only 22% had training in the last two years. Barriers to sufficient staffing of trained personnel are exacerbated by general limitations in human resources in African contexts [36] and limited knowledge of PC in the existing workforce [32], emphasizing the need to train and retain existing providers and equip them to disseminate PC knowledge and skills in their local contexts. In our study, responses to open-ended questions by frontline workers stressed the importance of training and expressed the desire to receive more of it. Feasibility for such training in Africa has been demonstrated through successful initiatives by the African Palliative Care Association [37] and, in Nigeria, a collaboration between Lagos University Teaching Hospital and Northwestern University [22,23].

Most sites in our study reported inadequate administrative support, hospital management support, and building space -- a concerning trend as support from health systems is a key determinant in the effective integration of PC services in Africa [20]. This may stem from minimal awareness or misconceptions about PC among hospital managements as multiple participants expressed its state of infancy in the Nigerian health system. Similar sentiments were reflected in a qualitative study of newly qualified physicians in Nigeria, where some were entirely unaware of PC units existing at their institutions [38]. These shortcomings must be addressed as healthcare worker knowledge, acceptability, motivation and commitment are key sub-themes in health systems strengthening to support PC [35]. In a systematic review by Court and Olivier [35], they found that advocacy from PC associations, champions of PC teams, and PC patients [39], and faith-based community structures [40] were particularly effective in improving acceptability and prioritizing PC within health systems in African countries. Thus, we believe that advocacy, aimed at both local healthcare professionals and leaders at the hospital and governmental level, will be a critical step in improving support for existing and future PC services.

Open-ended survey responses from frontline workers provided insight into their perceptions of successful PC. Participants described the interdisciplinary and holistic aspects of PC, alluding to the interplay of medical, social work, and spiritual support that comprise recommended PC models [9]. Previous studies indicate that spiritual care may be particularly relevant to African PC patients. A review of PC studies across Africa highlighted the implications of a commonly “intertwined perception of spirituality and religion”, reporting that patients and caregivers struggled to find meaning in the illness, and how many patients used faith and prayer to cope with worry and anxiety [41]. While chaplains are commonly involved in American PC provision [42], only one site in our study (site 3), which had the highest mean score for POS 5 (feeling life was worthwhile) and POS 6 (feeling at peace), reported having a cleric on their team, revealing a potential gap in current care models. Several participants also underscored the importance of compassion, honesty, and strong communication, demonstrating that these commonly identified facilitators of PC provision [4345] are relevant to the Nigerian context.

Patients reported mostly favorable experiences about sharing feelings, but mostly unfavorable or neutral feelings of worry, peace, and life being worthwhile. The depth of this finding is heightened by a study of PC patients in South Africa and Uganda by Selman et al., which found that feeling at peace and sensing meaning in life were more important to PC patients than physical comfort, and spiritual well-being was the outcome most correlated with overall quality of life [46]. Caregivers in our sample reported high levels of worry, which is concerning since family member caregivers of PC patients in Africa have demonstrated a high risk for depressive symptoms [47]. As PC provision [48] and decision-making [49,50]. become increasingly dependent on family members, more specific family-centered outcomes should be evaluated to identify actions or interventions that may improve the well-being of Nigerian PC caregivers. Of note, most patients and caregivers reported that they received sufficient information and advice to plan for the future, which is a commonly unmet need in PC [51].

Limitations

There were a few limitations to the study. As this environmental scan was only administered to a geographical subset of tertiary PC sites in Nigeria, generalizability to other institutions in Nigeria is limited. As only one to three frontline workers were surveyed per site, results regarding worker knowledge and training may be biased. Also, having a mix of dedicated staff and other staff with various responsibilities in the hospital aside the provision of palliative care services will skew the staff capacity at each site. Additionally, since all participants were over the age of 18, we cannot generalize patient and caregiver outcomes to the pediatric population. While the African Palliative Outcome Scale is a validated tool, there are no validated translations into local Nigerian languages and this could be a potential source of bias. Due to the limited number of sites included in this study, we were unable to analyze associations between patient-centered outcomes and site characteristics.

Conclusion

Our findings provide insights into the current models of PC delivery across Nigeria and the experiences of both providers and recipients of this care. Increased organizational support appears necessary to facilitate improvements in administrative resources, staffing, and training. Worry and hopelessness were prevalent among this sample of patients and caregivers, highlighting the need to prioritize emotional and spiritual wellbeing in Nigerian PC services. As the Nigerian population requiring palliation grows rapidly, further research is needed to refine current services and inform implementation efforts.

Supporting information

S1 Text. Checklist to assess site specific infrastructure and personnel.

(DOCX)

pgph.0004638.s001.docx (31.1KB, docx)
S2 Text. Environmental scan survey summaries.

(DOCX)

pgph.0004638.s002.docx (16.6KB, docx)
S3 Text. Palliative Outcome Scale (POS) per site.

(DOCX)

pgph.0004638.s003.docx (352.2KB, docx)
S4A Text. Admin/lead questionnaire.

(PDF)

pgph.0004638.s004.pdf (96.8KB, pdf)
S4B Text. Patient questionnaire.

(PDF)

pgph.0004638.s005.pdf (49.4KB, pdf)
S5 Text. Inclusivity in global research questionnaire.

(DOCX)

pgph.0004638.s006.docx (66.5KB, docx)
S1 Data. Palliative Outcome Scale (POS) for patients.

(XLSX)

pgph.0004638.s007.xlsx (14.9KB, xlsx)
S2 Data. Palliative Outcome Scale (POS) for caregivers.

(XLSX)

pgph.0004638.s008.xlsx (13.2KB, xlsx)

Acknowledgments

We owe tremendous thanks to the Nigerian palliative care providers, patients, and caregivers that participated in this study.

Data Availability

Most data collected is contained within the tables and figures of this manuscript. Other data are in supplementary files. Please email aogbenna@unilag.edu.ng or caput044@umn.edu for any requests.

Funding Statement

This work was supported by a philanthropic gift to the Robert J. Havey, MD Institute for Global Health at Northwestern University Feinberg School of Medicine (to ADP). The funder had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript. No authors received salary from the funders.

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PLOS Glob Public Health. doi: 10.1371/journal.pgph.0004638.r002

Decision Letter 0

Sakib Burza

29 Dec 2024

PGPH-D-24-02428

Organizational models and patient-reported outcomes for palliative care across five tertiary hospitals in Nigeria: an environmental scan

PLOS Global Public Health

Dear Dr. Ogbenna,

Thank you for submitting your manuscript to PLOS Global Public Health. After careful consideration, we feel that it has merit but does not fully meet PLOS Global Public Health’s publication criteria as it currently stands. Therefore, we invite you to submit a revised version of the manuscript that addresses the points raised during the review process.

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We look forward to receiving your revised manuscript.

Kind regards,

Sakib Burza, MBChB, MRCGP, MSc, PhD

Academic Editor

PLOS Global Public Health

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Additional Editor Comments (if provided):

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Reviewers' comments:

Reviewer's Responses to Questions

Comments to the Author

1. Does this manuscript meet PLOS Global Public Health’s publication criteria?>

Reviewer #1: Partly

Reviewer #2: Yes

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2. Has the statistical analysis been performed appropriately and rigorously?-->?>

Reviewer #1: No

Reviewer #2: I don't know

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3. Have the authors made all data underlying the findings in their manuscript fully available (please refer to the Data Availability Statement at the start of the manuscript PDF file)??>

The PLOS Data policy

Reviewer #1: No

Reviewer #2: No

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4. Is the manuscript presented in an intelligible fashion and written in standard English??>

Reviewer #1: Yes

Reviewer #2: Yes

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Reviewer #1: I would like to thank the authors for the opportunity to review this interesting study. This work addresses an important gap in the literature and supports needed development of palliative care in the West African context.

My main overall piece of feedback is that the data analysis, particularly of the patient/caregiver surveys could be more robust. There is a mention early in the paper regarding a confidence interval used to select the sample size, but then only descriptive statistics are reported. Since the authors aim to compare models of care, it would be more interesting to compare outcomes across sites even if findings are not statistically significant. Please find my other comments below:

Line 94: Typographical error: I think the authors meant "is expected to rise between 2020 and 2040"

Line 96: What is the other side of this dual challenge?

Line 135-136: The comment that all participated seems unnecessary unless other sites were invited who did not participate.

139 and 169: Please explain the sampling approach in more detail. How were participants selected? Was this a convenience sample or was random sampling used? Did any participants decline to participate?

162: This is a helpful explanation given the updates to CFIR

167: Is there a reason no clinical or demographic information were collected? This may have helped to contextualize the findings

168: Since you didn’t include any statistical inferences and only descriptive statistics in the analysis, the mention of margin of error and confidence intervals does not seem relevant here.

177: Could you say more about how the accuracy of the translations was ensured? Were the instruments translated ahead of time or translated in the moment by the research assistant? Was this person a trained translator?

183: Is there a reason you aggregated findings rather than comparing them between sites? Even if the sample size was small, this may have been useful information.

184-185: Could you say more about the methodology of this qualitative rapid review? Were data coded? How were quotations selected?

196-197: Could you define the difference between PC admission and inpatient hospice care?

Table 2: Could you clarify the difference between a standalone unit and a designated PC ward?

204-206: These ratios are somewhat hard to interpret. If I understood correctly, these same teams are involved in providing inpatient care? If so, the ratios are interesting but they don't take into account workload involved in inpatient care.

Table 3: Are all of these dedicated staff? Do they only work in the PC department/service or do they have other responsibilities?

219: I can see why including one leader per site was enough because you were focused on characteristics of the program and a single person could answer this. But a larger sample size for staff would have strengthened the findings. Perhaps you can offer an explanation for the small sample of staff (several sites only had 1 respondent).

220-221: Interesting that this contradicts what leaders shared. Did they define training differently maybe?

Table 4: Did the participant mean empathic or empathetic?

237-244: It is difficult to interpret these proportions without a comparator. It may be more useful to compare these outcomes between sites for example. Did sites with different models of care have different outcomes?

Additionally, when you say that 21% agreed they were in pain, was this a yes or no question? If not, it would be good to clarify if this includes patients who agreed as well as those who strongly agreed? And so forth for the other items.

Does the question about pain assess if the participant is currently in pain or ever in pain? Does this indicate effective pain control or a population in which pain is not the primary problem?

Overall the analysis of the patient/caregivers surveys could be more robust.

251: It actually seems that pain control was quite good, although the finding is hard to interpret.

259: As I mentioned before, it's hard to interpret this. If one nurse is seeing 10 outpatients in a week, that still seems like a good ratio, but it really depends on that nurse's other duties.

264: It would have been interesting to ask front-line staff and leaders specfiically about opioid access and use.

270: Could you address the discrepancy between how leaders and front-line staff described training coverage?

302-303: This is a helpful point about the need to incorporate spiritual support.

307-308: The phrasing here is a bit confusing. Positive in the sense that they agreed they had pain or positive in the sense that it was good that they had good pain control. Consider using "neutral or disagree" that they had been in pain.

312: This is a helpful notation of a limitation of the study. Consider mentioning that the question is ambiguous about whether this is assessing current pain, or "having been in pain" at some point.

321: In what way is decision-making increasingly dependent on family members? Are you referring to cultural trends or as the patient's condition worsens?

335: Is this due to the number of sites or the number of participants per site? It seems as though you could compare for example, the patient centered outcomes between sites that had a standalone unit, different staffing ratios, or perhaps adequate space or not?

337: It seems as though your findings are more descriptive of the challenges different teams face more so than their model of care. I would have liked to hear more about how the programs were organized (standalone, outpatient, consulting) and how that relates to patient-centered outcomes.

355: It would be helpful to mention ethics approval and consent procedures in more detail in the body of the manuscript

Reviewer #2: The manuscript aims to answer 2 questions about palliative care delivery in Nigeria, namely 1. models of palliative care delivery and 2. patient and caregiver centred outcomes for those receiving palliative care. This manuscript adds to the literature and gives insight into palliative care development in Nigeria.

The authors main conclusions are justified by the data presented in the manuscript.

A weakness in this study is that only 5 out of 8 PC centres within tertiary health institutions were surveyed. The manuscript describes PC being provided in more than 20 sites in Nigeria, and it would have been interesting to learn more about organisational models also outside of tertiary centres.

Survey participants:

The author describes the survey of frontline staff, yet the survey is not provided in the appendices. The number of frontline staff surveyed was very low, and given one of the key reported findings was a lack of training in palliative care (only 56% of staff reported to have ever received palliative care training), the author should explain if efforts were made to survey more frontline staff and if not, why not. Also note discrepancy between leadership and frontline workers reporting of training.

Data:

The author provides data of organisational models in table 2, and the leadership survey (of organisational models) is provided in appendix 1. The data in table 2 misses some key information from the survey e.g. availability of home-based palliative care. In addition, data is reported in table 2 that does not appear to be asked about in the survey included in the manuscript, e.g., housing system for patient’s relatives.

Staff ratios are reported 1:1 to 1:10 staff to patients per week, yet the location of care does not seem to be mentioned here (10 out-patients per staff member per week versus 10 in-patients?).

Interpretation of patient and caregiver POS:

The author does not include in the manuscript the timing of patient and caregiver POS, e.g., on first assessment at time of referral, or 6 weeks after receiving palliative care etc. This is relevant to interpret the impact of palliative care on the POS. Yet the author appears to reach 2 contradictory interpretations from the POS in the discussion section. See Line 251/252 – highlight need to improve services for pain management and line 307/308 – suggests adequate pain control.

Other comments:

The author states in the introduction there are 3 million annual deaths in Nigeria, yet numbers of patients reviewed at each site are low (4 -20 patients per week). Does the author have any insights into why patient numbers are low despite the estimated need being so high?

Line 94 - PC estimated to rise to what? the figure is missing

**********

what does this mean? ). If published, this will include your full peer review and any attached files.

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Reviewer #1: No

Reviewer #2: Yes:  Kathryn Richardson

**********

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PLOS Glob Public Health. doi: 10.1371/journal.pgph.0004638.r004

Decision Letter 1

Sakib Burza

1 May 2025

Organizational models and patient-reported outcomes for palliative care across five tertiary hospitals in Nigeria: an environmental scan

PGPH-D-24-02428R1

Dear Dr. Ogbenna,

We are pleased to inform you that your manuscript 'Organizational models and patient-reported outcomes for palliative care across five tertiary hospitals in Nigeria: an environmental scan' has been provisionally accepted for publication in PLOS Global Public Health.

Before your manuscript can be formally accepted you will need to complete some formatting changes, which you will receive in a follow up email. A member of our team will be in touch with a set of requests.

Please note that your manuscript will not be scheduled for publication until you have made the required changes, so a swift response is appreciated.

IMPORTANT: The editorial review process is now complete. PLOS will only permit corrections to spelling, formatting or significant scientific errors from this point onwards. Requests for major changes, or any which affect the scientific understanding of your work, will cause delays to the publication date of your manuscript.

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Thank you again for supporting Open Access publishing; we are looking forward to publishing your work in PLOS Global Public Health.

Best regards,

Sakib Burza, MBChB, MRCGP, MSc, PhD

Academic Editor

PLOS Global Public Health

***********************************************************

Please include the minor comments from Reviewer 1, which I agree with.

Reviewer Comments (if any, and for reference):

Reviewer's Responses to Questions

Comments to the Author

Reviewer #1: (No Response)

**********

publication criteria?>

Reviewer #1: Yes

**********

3. Has the statistical analysis been performed appropriately and rigorously?-->?>

Reviewer #1: Yes

**********

4. Have the authors made all data underlying the findings in their manuscript fully available (please refer to the Data Availability Statement at the start of the manuscript PDF file)??>

The PLOS Data policy

Reviewer #1: Yes

**********

5. Is the manuscript presented in an intelligible fashion and written in standard English??>

Reviewer #1: Yes

**********

Reviewer #1: I would like to thank the authors for their careful and thoughtful responses to the feedback I shared. This is an important piece of work, and I am eager to see it published.

In my assessment the manuscript is ready for publication after the following small revision:

Line 193-197: Thank you for the revisions regarding the qualitative analysis; they are helpful. I understand this was not the main component of your study, but I think there is need for some further clarification.

The way you use the term “themes” in this section is not typical, unless you are referring to a specific methodology that I am not familiar with. When you say that the “themes were identified for each response”, could you define and describe the themes? It seems from the table on page 14 that you used the CFIR framework to code the data perhaps? If so, that is a reasonable deductive approach for this kind of study it would just help to clarify.

**********

what does this mean? ). If published, this will include your full peer review and any attached files.

Do you want your identity to be public for this peer review? If you choose “no”, your identity will remain anonymous but your review may still be made public.

For information about this choice, including consent withdrawal, please see our Privacy Policy

Reviewer #1: No

**********

Associated Data

    This section collects any data citations, data availability statements, or supplementary materials included in this article.

    Supplementary Materials

    S1 Text. Checklist to assess site specific infrastructure and personnel.

    (DOCX)

    pgph.0004638.s001.docx (31.1KB, docx)
    S2 Text. Environmental scan survey summaries.

    (DOCX)

    pgph.0004638.s002.docx (16.6KB, docx)
    S3 Text. Palliative Outcome Scale (POS) per site.

    (DOCX)

    pgph.0004638.s003.docx (352.2KB, docx)
    S4A Text. Admin/lead questionnaire.

    (PDF)

    pgph.0004638.s004.pdf (96.8KB, pdf)
    S4B Text. Patient questionnaire.

    (PDF)

    pgph.0004638.s005.pdf (49.4KB, pdf)
    S5 Text. Inclusivity in global research questionnaire.

    (DOCX)

    pgph.0004638.s006.docx (66.5KB, docx)
    S1 Data. Palliative Outcome Scale (POS) for patients.

    (XLSX)

    pgph.0004638.s007.xlsx (14.9KB, xlsx)
    S2 Data. Palliative Outcome Scale (POS) for caregivers.

    (XLSX)

    pgph.0004638.s008.xlsx (13.2KB, xlsx)
    Attachment

    Submitted filename: Response to Reviewers.docx

    pgph.0004638.s010.docx (31.9KB, docx)

    Data Availability Statement

    Most data collected is contained within the tables and figures of this manuscript. Other data are in supplementary files. Please email aogbenna@unilag.edu.ng or caput044@umn.edu for any requests.


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