Understanding system-level barriers to pediatric neuro-oncology in Ghana: Qualitative insights from frontline healthcare professionals

Abstract

Background

Previous studies have shown significant gaps in the timely delivery of pediatric neurosurgical-oncologic care in sub-Saharan Africa despite the significant patient volume. The study aims to elucidate how the healthcare system and sociocultural norms and religious beliefs determine the outcomes of pediatric central nervous system (CNS) tumor care in Ghana based on the experiences of healthcare professionals.

Methods

This was a qualitative descriptive study; 15 healthcare professionals at Komfo Anokye Teaching Hospital (KATH) recruited through purposive sampling underwent audio-recorded semi-structured in-depth interviews. Interviews took place at the administrative offices of participants located on-site at KATH. Interviews were conducted by 2 co-investigators who had a professional relationship with the participants. Thematic saturation was reached after 9 interviews. Recordings were transcribed verbatim and coding and inductive thematic analysis was manually completed following Braun and Clarke’s 6-step method.

Results

Thematic analysis yielded 3 overarching themes and 7 sub-themes with each illustrated with comments from study participants. The 3 overarching themes were: (1) The limitations of the healthcare system including limited availability of cancer treatment centers (2) Societal structures and norms which influence gender roles and healthcare decision making. (3) The impact of structural and social barriers to care leading to a 2 to 12 months delay in diagnosis with resultant poor treatment outcomes

Conclusion

The study adds to our understanding of the multifaceted barriers associated with pediatric neurosurgical-oncologic care in Ghana and how these barriers interact to impact outcomes. The study findings facilitate a comprehensive approach to designing and implementing health systems strengthening interventions to improve access to care.

Key Points.

• Healthcare seeking behaviors are influenced by health literacy levels, financial constraints, and sociocultural and religious beliefs leading to delayed presentation at cancer treatment centers.

• Treatment of pediatric brain and spine tumors are associated with catastrophic medical expenses and psychological impacts on both pediatric patients and caregivers.

• There is an urgent need for pediatric brain and spine tumor treatment capacity strengthening as well as culturally sensitive public health education about the condition.

Importance of the Study

Pediatric central nervous system tumors are the leading cause of childhood cancer-related mortality worldwide. Previous studies have reported systemic and patient-related barriers to pediatric neuro-oncology care, however, there is lack of descriptive data on these barriers and how they interact to impact access to care and outcomes. This study provides a rich qualitative description of the underlying health system and societal barriers to care and how these barriers interact to impact outcomes. The manuscript seeks to provide a holistic understanding of the multifaceted barriers to pediatric neuro-oncology care in the African setting beyond what quantitative data can provide.

Previously, CNS tumors were thought to be less prevalent in sub-Saharan Africa (SSA).^1,2 However, studies show that the low incidence rates previously reported were due to a lack of reliable data reporting systems, tumor registries, and poor access to care.³ According to a 2022 report from International Agency for Research on Cancer (IARC), SSA contributed 9.8% of new pediatric CNS tumor cases and 12.8% of pediatric CNS tumor deaths for ages 0-19 years reported across the World Health Organization (WHO) regions.⁴ A study conducted to evaluate the disparities in childhood CNS tumors and leukemia care using quality of care index (CQI) as a quality measure showed that SSA had the lowest CQI for CNS tumor care.⁵ Treatment of CNS tumors presents unique challenges due to the need for multi-disciplinary care, capital-intensive diagnostic and surgical infrastructure, and adjuvant therapy.^6,7

Previous studies conducted across 7 national neurosurgical treatment centers in 7 countries in SSA including Ghana showed profound gaps in the provision of timely and quality pediatric neurosurgical-oncologic care despite the significant patient volume.^6,7 The contributing ­systemic and patient-related factors to the disparities in pediatric neurosurgical-oncologic care, how these numerous ­factors interact, the social drivers involved, and effective points of intervention have however not yet been explored.

Building on these 2 previous studies, we sought to further gain an in-depth and robust understanding of the barriers to care, contextual nuances, and how they interact to impact provision of pediatric CNS tumor care and treatment outcomes. This study, the third phase of the larger SSA pediatric neurosurgical-oncologic consortium project investigates the underlying mechanisms driving poor pediatric CNS tumor outcomes in the region. We explored the perspectives of some of the relevant stakeholders on pediatric neurosurgical-oncologic care including parents/caregivers of patients diagnosed with pediatric CNS tumors, healthcare providers, health institution leaders, and spiritual leaders at one of the 7 treatment centers in SSA.

In this paper, we report the perspectives of the healthcare professionals at Komfo Anokye Teaching Hospital (KATH), Kumasi, Ghana, on the structure of the Ghanaian healthcare system and the sociocultural norms and religious beliefs and how they drive pediatric CNS tumor treatment outcomes in Ghana. Herein, we aim to characterize health-system and sociocultural barriers to timely pediatric CNS tumor care at KATH, and to map how these factors interact to impact care and outcomes.

Methods

Study Design

This study was part of a large qualitative descriptive study to elucidate the obstacles to pediatric CNS tumor care in Ghana. The current study focused on an open-ended exploration of the experiences of healthcare professionals in Ghana. This was to help uncover unrecognized or overlooked factors significantly impacting pediatric CNS tumor care. The study followed the Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines.⁸

Study Setting and Participants

The study was undertaken at KATH, a public teaching hospital with the second largest neurosurgical and cancer treatment center in Ghana. Purposive sampling was used to recruit fifteen experienced healthcare providers who formed an active part of the multidisciplinary neurosurgical-oncology team at KATH. For the purposes of this study, providers with the most experience working with pediatric CNS tumor patients identified by the senior investigators at KATH (F.N.B, L.O.T., and D.A.) were recruited.

Data Collection

Data were collected through semi-structured face-to-face interviews from October 2023 to November 2023. All 15 healthcare professionals at KATH agreed to participate in the study. Out of the 15 healthcare professionals who participated in the study, 8 were male, and seven were female. Participants had a median of 8 years (range: 3-20 years) experience working with pediatric CNS tumor patients at KATH. Table 1 provides a summary of the demographic ­characteristics of study participants.

Table 1.

Summary of the demographic characteristics of the study participants

Participant role	Years of experience	Gender
Pediatric oncologist	5	Male
Pediatric critical care specialist	12	Male
Anesthesiologist	19	Female
Pathologist	8	Female
Physical therapist	11	Female
Perioperative nurse	3	Male
Radiation oncologist	13	Male
Pediatrician	20	Male
Radiologist	8	Male
Pediatric oncology nurse	18	Female
Social worker	5	Female
Hematologist and laboratory medicine specialist	5	Female
Surgical nurse	5	Female
Pediatric neurologist	6	Male
Neurosurgeon	6	Male

Interviews were conducted at the participant’s preferred place–providers had their interviewers at their administrative offices while the other healthcare professionals used their shared space in their department offices at the hospital. Interviews were conducted one-on-one by 2 co-investigators (L.S.G. and A.L.). Both interviewers were neurosurgery interns at their designated institutions and had a professional but cordial relationship with the study participants. One co-investigator led an interview session with the aid of an interview guide (Supplementary File S1) to ensure data collection consistency. Interviews lasted a median time of 75 minutes (range: 35-123 minutes). Open-ended data-generating questions surrounding health seeking behaviors, available treatment infrastructure, funding support were asked. Follow-up questions. including “Could you please elaborate on this?” and “What does this mean?” were asked as needed to obtain more information on the subject. The interviewers determined that thematic saturation was reached after completing 9 in-depth interviews based on the repetition of key themes and the lack of novel perspectives. Six more interviews were, however, conducted to ensure the participation of all the major clinical stakeholders.

Data Processing and Analysis

All interviews were conducted in English and were audio recorded with the participant’s permission. Interviews were transcribed verbatim at the end of data collection by an independent transcription team. Unique codes were assigned to each respondent, and transcription was completed with no identifying data. All transcripts were reviewed and verified for accuracy by comparing them to the original audio recordings. Transcript verification was completed by 3 co-investigators (J.H.C., L.S.G., and A.L.). Transcripts were not returned to participants for comments and/or correction.

To capture a broad understanding of study participants' experiences rather than focusing on their individual experiences, the data were analyzed using inductive thematic analysis based on Braun and Clarke’s 6-step method as outlined in Supplementary File S2.⁹ Data analysis was performed manually without the use of qualitative data analysis software.

From Codes and Themes to Systems Map

Based on the completed thematic analysis, a systems map was constructed to demonstrate how the various health system and social factors identified interact to influence healthcare-seeking behaviors and ultimately impact outcomes (Figure 1). The systems map was constructed by 2 authors (J.H.C. and L.S.G.) using Kumu, a free systems mapping tool (Supplementary File S2).¹⁰  Rigor, trustworthiness, and reflexivity

Figure 1.

A systems map illustrating patient-related and systemic barriers to pediatric neurosurgical-oncology care in Ghana.

To increase rigor and ensure the trustworthiness of study results, we employed several strategies in line with Lincoln and Guba’s criteria for credibility, dependability, confirmability, and transferability criteria.¹¹ Our core global research consisted of a multidisciplinary team with insider/outsider research team configuration (Supplementary File S2). This provided a varied experience and broad perspective which is highly valuable and helps maximize the accurate interpretation of data.¹² This was also part of the Vanderbilt Global Neurosurgery Program’s effort to promote peer-to-peer research mentorship through an HIC-LMIC twinning paradigm.¹³ One of the co-investigators (J.H.C) familiar with both the research topic and study setting met virtually with the data collection team (L.S.G, A.L, J.A.G) to conduct peer debriefing at the end of interview sessions and throughout the analysis phase to discuss findings to achieve confirmability.

Ethics Approval and Consent to Participate

The study was approved by the KATH Institutional Review Board (IRB) (KATH IRB/AP/194/23), the Kwame Nkrumah University of Science and Technology IRB (CHRPE/AP/940/23), and the Vanderbilt University Medical Center IRB (VUMC IRB #231203). All methods/study procedures were carried out in accordance with ethical guidelines and regulations. Both written and verbal informed consents were obtained from all participants after study objectives and the voluntary nature of study participation were adequately explained to them. All information shared by study participants was treated as confidential in compliance with ethical standards. Refreshments were offered to participants during the interviews as a token of appreciation for their time. No monetary compensation was provided.

Results

Qualitative Results

A total of 9 overarching themes emerged from the inductive thematic analysis of the qualitative data. Due to the large volume of data generated, co-authors decided on a phased approach to reporting study findings with each manuscript addressing a key area impacting pediatric CNS tumor care. Three dominant categories were identified based on the 9 overarching themes generated. Three of the overarching themes were centered on the functional structure of the Ghanaian healthcare system, sociocultural norms, and religious beliefs, and how these drive pediatric neuro-oncology outcomes in Ghana. These themes are presented in this manuscript. The remaining 6 overarching themes highlighted the limitations of the neurosurgical-oncologic infrastructure at KATH and the caregiver healthcare provider interactions in the management of pediatric CNS tumors (Supplementary File S3). Overarching themes related to these 2 dominant categories as well as perspectives from caregivers, health institution leaders, and spiritual leaders will be reported elsewhere.

We elaborate on the 3 overarching themes and their associated subthemes related to the Ghanaian societal and healthcare system factors and their implications on health outcomes using representative quotes from the participants' interviews below.

Overarching theme 1: limitations of the healthcare system

The healthcare professionals interviewed shared their knowledge and perspectives on the complexities and deficiencies of neurosurgical-oncology care in Ghana. Additional quotes illustrating theme 1 are presented in Table 2.

Table 2.

Example quotes supporting Theme 1: Limitations of the healthcare system

Overarching Theme	Sub-themes	Supportive quotes
Limitations of the healthcare system	1. Availability of cancer treatment centers *Seven out of eight participants contacted endorsed this subtheme.	“…geography is very important. If you look at the location of Kumasi and you take the map of Ghana, it’s a bit central. And the road network in Ghana also makes it in such a way that, you can’t move from North to South without passing through Kumasi. So, Kumasi is a very busy transit point for most people. We, in this hospital get cases from almost all the regions in Ghana except maybe the Greater Accra region because they have Accra and I think the Volta region because it is too complex to come from the Volta region to Kumasi. But we get cases from central region, western north, bono, bono east, eastern and then the five northern regions. So it is almost from every part of the country.”—HC-14 “Though the government tries to get a health facility in such remote areas to help, but these are rather maybe CHPS compounds or just a health clinic which are not sophisticated enough for such cases that are being brought in. They send it to these peripheral facilities; they will first try to look at other diagnosis and try to treat the symptoms that you present with. But if they try for a long while and it is not resolved, then they might refer to a facility which is a little higher than them. So, upon going through that channel, by the time it gets to where they will see that this one needs the attention of a specialist or a consultant in a tertiary facility, it would have taken a long time whereby the condition might have deteriorated a bit. But those who find themselves in the urban sector, where facilities and resources are in much abundance, tend to have the opportunity of sending their kids who present with these symptoms earlier to these bigger facilities and get immediate care. So, it tends to maximize their output in caring for these kids than those in the rural areas or faraway lands.”—HC-6 “Sometimes the problem is the people [healthcare providers] at the peripherals. In my view, they don’t have much knowledge when it comes to cancer care. So, they see it, and they will not even suspect cancer. So sometimes that is what is also causing the delays. They will try to treat something else. When that thing fails, they go on to something else. Before they know that it is cancer, it might take up to three months. So, the delay is not even only from the patients. It is also from we the health workers. But when you listen to their story, when they come and you ask them; Have you been to the hospital? And we are thinking that, if he had gone to a hospital then he should have been here [at KATH] earlier. Yet, being able to fish out that, this is cancer, and I need to refer the child quickly is not there.”—HC-10
	2. Healthcare financing *All eight participants contacted endorsed this subtheme.	“As it stands now, I think that our NHIS has not really got a clear-cut amount with respect to CNS tumors. I think it cuts across pediatrics. So once you go through surgery, whatever surgery you are going to have, they have a quota but not necessarily for CNS tumors. They don’t really have a clear-cut amount. It is what every pediatric patient is enjoying. That is what they [pediatric CNS tumor patients] are enjoying.”—HC-13 “Funding [for pediatric neurosurgical oncology] is woefully inappropriate because the fact is that the resources needed cannot be provided; or have never been provided for almost 9 years now… We don’t even know the allocation and even know how much is allocated specifically for that. So, it is not pre-planned. You ideally want to pre-plan to decide that okay 2% of hospital resources will be put into supporting the intensive care unit. That’s not the situation, right? Yes, so we don’t have such a plan, a strategic approach to distribution of funds. So, sometimes it depends on who you meet, it depends on how aggressive you are at pushing forward, yeah!”—HC-2 “But the main thing is… I have to be frank; we’ve not been able to make children pay for their radiotherapy treatments ever since I took up. We haven’t had any official backing from central management, but the point is we know in Ghana, there’s a policy that no one should be denied treatment even if they don’t have money. So, when they express the desire that they don’t have money, it means the social worker must be brought in to establish correctly that they cannot afford to pay for the treatment and then recommend for the central management to waive the bill. Now, that takes a long time. So, since I’ve taken over or since I took over, I have been ordering directly that the children should be treated. Now, I’m told, or we are told that the treatment for children, cancer in children is free and we have not had an official letter, to the department that maybe, radiation should be offered for free but our colleagues at the pediatric oncology said that they have the nod that they can treat the kids for free.”—HC-7 “The first source has always been the family; the family will have to raise the funds. And I know many people will talk about health insurance, but our health insurance is still very basic and will not cover a lot of the procedures and treatment given and the family will have to raise the funds. The health insurance will probably take care of pain medications and hospital bed space and things like that. But even with a VP shunt, the patient will have to buy it. I have never seen health insurance taking care of [the cost of] VP shunts so even VP shunts, the patient must buy it.”—HC-14 “Insurance covers the costs of the clinic attendance and some of the cost of the surgery. But intensive care unit cost is not borne by insurance. Some medications and items needed for surgery are not paid for by insurance. So before, during, and after surgery, patients need to have some funds available to be able to pay for all these costs. It’s a bit huge. It’s on the higher side because insurance doesn’t pay for the use of gadgets that are used to do the surgery. Craniotome and its bit—the patients have to pay for the bit.”—HC-15

Subtheme 1.1: availability of cancer treatment centers

Most of the healthcare professionals expressed their frustration with the limited number of pediatric cancer treatment centers available in the country, causing patients and caregivers to travel long distances for care and the burden on the few treatment centers available. They reported that pediatric neurosurgical-oncologic care was available primarily at 2 tertiary facilities in 2 regions, KATH in the Ashanti Region and Korle Bu Teaching Hospital in the Greater Accra Region (Figure 2).

Figure 2.

A geospatial map of Ghana showing regions and hospitals with neurosurgical and pediatric neurosurgical-oncologic care access. Hospital location coordinates sourced from Google Maps (maps.google.com) on November 7, 2025.

“Like I told you, we only have Korle-Bu [KBTH] and Komfo Anokye [KATH] that can give you that treatment, chemotherapy, especially radiotherapy. If it’s not here [KATH], then it is Korle Bu [KBTH]. What about somebody who is coming all the way from the border?… She must travel down here. She has no relatives here. Where is she coming to stay? Where is she sleeping and eating? The TNT [transportation]. … If she has access to a hospital there that can treat cancer, then she doesn’t need to come here … So that’s why I think access is also a problem. Because even for CT, she must travel down here, come and do the CT, send it back to the doctor there, confirm and come back here with the referral.”—HC-10

They also noted caregivers' overreliance on self-medication and peripheral facilities, which served as the first point of care for most patients. They shared concerns about the clinical competence of healthcare providers at peripheral facilities. Based on their experiences, they reported that many peripheral healthcare providers had inadequate clinical knowledge related to neurosurgical-oncology and cancer care in general. This often led to instances of misdiagnosis or missed diagnosis. The lack of diagnostic infrastructure at these peripheral facilities further compounded the problem.

“Most areas, there are hospitals across the country and most of the hospitals don’t have well trained clinicians. They are physician assistants. Sometimes they also hold on to patients and delaying treatment because they think they can manage the complaints… The experience and the knowledge of the people attending to them at the peripheral facility. What will you attribute these misdiagnoses to? Some of these things, if you don’t have the knowledge, you can’t diagnose. Sometimes, you may have the knowledge, but you may need to have the experience of putting things together to be able to determine the diagnosis. …. So, by the time they get to a referral center where investigations are done to find out the underlying cause of the seizures, the condition may have gone out of hand.”—HC-15

Subtheme 1.2: healthcare financing

Inadequate funding support for pediatric neurosurgical-oncologic care at both the national and health institutional levels was counted as a major drawback for the provision of care. Healthcare financing through the National Health Insurance Scheme (NHIS) was woefully inadequate to cover the high cost of neurosurgical-oncologic care. Hence, a greater percentage of the cost of care was borne by patients and families.

“Financially, though we have the NHIS service, which is the National Health Insurance Scheme, it is very limited. It doesn’t cover most of these things for you to do certain diagnostic investigations. And even with the peripheral facilities getting access to these things is on a ratio of like 1 out of 5, yeah! It will be very difficult. If relatives or parents are not financially stable or sustained, they will try to turn to herbal remedies or even get to the pharmacies to get something to manage the symptom but not the actual cause.”—HC-6

Health professionals described having to actively advocate for the resources needed to provide essential neuro-oncology care, especially for poor families/patients. They also cited instances where patients had to pay high out of pocket costs (OOPs) for services which were supposed to be included in the NHIS benefits package, indicating challenges with NHIS implementation.

“The traditional anti-seizure medications … are covered under the scheme even though there are still challenges but on paper, they are covered. Then we have the newer anti-seizure medications …, those ones, they are not [covered]. The ones that are covered, even that one I said there are challenges … most pharmacists will not give it to the patients who are holding the NHIS cards. Because my understanding is that either the NHIS takes too long in reimbursing them or the NHIS reimbursement is below the value of the drug, so they don’t make a good margin. So instead, they tell you it’s not available on NHIS. … They will tell you they don’t have it but if you have money, they will sell it to you. So that is it. And even within the hospital, we’ve had challenges with NHIS coverage….—HC-14

Theme 2: societal structures and norms

This overarching theme highlights implicit and explicit social, cultural, and religious beliefs and expectations which impact the healthcare-seeking behaviors of Ghanaians. Additional quotes illustrating theme 2 are presented in Table 3.

Table 3.

Sample quotes supporting Theme 2: Societal structures and norms

Overarching theme	Sub-themes	Supportive quotes
Societal structures and norms	1. Social roles and stratification *All eight participants contacted endorsed this subtheme.	“There may be an uncle who probably is abroad, has no idea what is going on here but because he is the one providing the finances, his opinion does matter a lot. If this uncle for example says take the child out of hospital, take him to this pastor or this fetish priest who I have heard is powerful, that becomes a big challenge. The family dynamics count a lot. It really counts a lot. If you (the healthcare provider) will succeed, you’ll need these family members and opinion leaders on your side.—HC-14 “I have come across a parent who blamed the mother for being responsible for the child’s condition because of the premorbid… They were not on good terms, so the father felt that whatever was wrong with the child, the mother was responsible for it. And when I listened to that particular couple, the father was trying to relate it and blame it on a spiritual cause that her family was responsible. He was saying they are not good people, blah, blah, blah. 'I feel that you are the one responsible so I’m not going to waste my money. You brought it so take care of that.' …Whenever it happens this way, it brings a lot of friction: That is what I’ve observed.”—HC- 13 “But the cost is a reality because most of the cost is paid out of pocket. And if you look at our economic indices, most of the parents are unemployed so they are dependent on people for support and shifting all those costs to those people becomes a bit of a problem. Those who are employed too, their wages are on the low side so they can’t afford the cost of the investigations, so it tends to delay them in seeking appropriate medical care for their kids.”—HC-15 “… Now, when there is polygamy, or the man is having to take care of many, like the man is married to maybe four or five women. Then you know that when one of the children falls sick, it’s not only that child he is taking care of. He has many wives, many children and that makes it a little bit difficult, okay. In the same way, you could have a monogamous society or ethnic group, but the question is if he’s not working. Even if he’s working, he’s not earning much, it’s not making any difference in terms of how much he can support the child. So, it depends. Yeah, so you can’t single out one ethnic group and say that these people, they come all the time and they’re not able to find money, I mean it cuts across.”—HC-7
	2. Societal perceptions and health literacy *All eight participants contacted endorsed this subtheme.	“Accessing care in Ghana? Walking into a Ghanaian hospital? Even me, when I’m sick, I don’t want to go. I have a horrible throat…, I have just… because it will cost me almost 6 hours of my time and I work here. It is one of the most daunting things ever.—HC-1 “Until recently, even some members of parliament didn’t know that cancers could affect children. To them cancers affected the breast, the prostate and the uterus and they thought children didn’t have some of these organs. So that is one big milestone we have achieved but I think there is still more to do. Most people think children don’t have cancer, let alone brain cancer. Even adults, we hardly hear of brain cancers. The talk is about breast cancer and prostate most of the time. To hear about brain cancer in an adult is not so common. It’s not something you’ll hear every day on radio, but I bet you every day, you’ll hear about prostate, and you’ll hear about breast. You don’t hear about brain cancers. For a culture that doesn’t believe that children can have cancer and even brain cancer, it’s very difficult. So sometimes, it comes as a shock to them when you tell them that the child has brain cancer.”—HC-14 “They feel that the child wouldn’t do well. People are even shocked to hear that surgeries are performed on the brain and just informing them, they are like 'where are going to perform the surgery? Are you going to cut the brain?' And they are like 'wow!' And you see the facial expression and they are like 'oh no, if you touch the brain of my child, will my child ever be normal?' That is the next question they will ask you. 'Can they ever be normal?' And you can’t really give a guarantee because they might end up with some deficits depending on the position of the tumor, you have to tell them. You can’t assure them that after surgery, your child will be back to the premorbid state. So once they feel the child wouldn’t do well, they feel that let’s try other areas, let’s try other sources of management, let’s go and pray, God can change it.”—HC-13 “… they start talking to people and say, oh, my child has this condition. They [healthcare workers] say I have to do this. Then someone will tell them, 'Don’t worry, if you go to hospitals, you will die. So rather try this.' It’s kind of, once they trust us and come to us and we are not able to meet them in their time of need then they now seek answers elsewhere. For instance, a parent lost a child not to brain tumor but to leukemia recently. And he called me to tell me that he had lost the child. And one of the things he said was that, when he got to our unit [pediatric oncology], many of the parents were telling him they don’t think his child would survive. So, he should take this child out of our unit to a prayer camp or to church or to something because we cannot help him.”—HC-1 “The few occasions that they’ve been told that the child has a tumor, and they should be referred to this place [Komfo Anokye Teaching Hospital]. No! they don’t want to believe that. The shock from that and as I said earlier because we normally refer to it (tumor) in the local language, more or less like 'cancer’. Once they see it, they say it’s “adult disease” and they don’t believe that their child will have that disease. So, they also shop around and when they go, they want you [healthcare provider] to start afresh because they want to throw that one [initial tumor diagnosis] away. So at times, they are aware. You may say 6 months but if you go deeper, they may be informed somewhere that this is what they suspected but the parents don’t want to accept it. They are in a denial state, and they don’t want to come and tell you that this person said I have a tumor.”—HC-8
	3. Spiritual beliefs and influence *All eight participants contacted endorsed this subtheme.	“The level of literacy is a key factor. And even if they are literates, because sometimes they attribute it to spiritual causes, they think the spiritualist is the best of options. So even if you diagnose, they think a spiritualist must come in because somebody somewhere may have invoked some curses on their kids or some power somewhere may have attacked them for which reason, it has to be dealt with spiritually. They resort to alternative sources of treatment.”—HC-15 “Our Christianity has brainwashed us to a point and also adulterated us so we would always want to go to the pastors. We go to confide in them, to let them pray. Somebody even before surgery would even want their pastor to come there, pray with them before they enter (the operating room). Somebody would want to put on something the pastor gave them, and they want it to be on them during surgery. And if the pastor says, 'don’t go [to surgery], you will die!' they won’t go. So that is how our system is. We believe so much in our men of God. We believe so much in what they say, we believe that they see beyond the ordinary, so we believe that whatever they are saying is true. So that is what I’ll say makes parents take such decisions.”—HC-13 “… the religious ones, the Muslims, she needs not only this money but also his agreement that he will allows her (take the sick child to the hospital).”—HC-3 “Other people will seek herbal remedies from herbal practitioners. So, they go and present their symptoms to them, and they will give some herbal remedies to help resolve the symptoms. This will take a considerable number of days because they need to see that their treatment is working. Other people also turn to religious centers, churches, church camps and other stuff. Not debunking religion is not good, but I think that there is a purpose for everything that is being done.”—HC-6

Subtheme 2.1: social roles and stratification

Participants described the influence of the caregiver’s family unit and gender roles with financial provision and decision-making roles primarily assigned to the father. Healthcare decision-making was significantly influenced by the family dynamics and socio-economic status of the family. The decision and ability to seek medical care were usually determined by the father, especially since many mothers were not actively working and financially dependent on the fathers. Additionally, low socioeconomic status made it challenging for many families to make a timely decision to seek medical care due to the cost of care.

“You see, it depends on whether the woman is educated or not. Most of the educated women, first, they don’t have so many children. They have what they can handle. Secondly, educated woman will have a job and will have her own money and means and if she wants to take the child to see the doctor, she will do it because she has her own means to do so. Uneducated women have more children, and she depends fully on their husband for everything. She is staying at home with her kids. And then she’s making some petty, petty money with trading. It is not enough. Therefore, she will depend on the husband for transportation money, or the money for labs, for MRI…”—HC-3

The major role played by the extended family was also described. Relatives who are the financial pillars of the family play a critical role in the health care decision making process. In some cases, parents who were poor depended on external family members for financial assistance to seek healthcare. These family members significantly influenced healthcare decision-making. Participants, however, acknowledged that this family dynamic tended to be more common among certain ethnic groups, especially the Akans.

“In our part of the world, caregivers go beyond the parents. You have aunties, uncles, grandparents and some of them are very powerful. And some of them may also be the financial might behind the treatment so their opinions really do matter… Some of the parents don’t really make the decision. Even though they are the ones you see every day, there are people behind the scenes who really matter. Sometimes we do ask, 'can we have such and such a person come around for us to talk?' On a few occasions, they come around and sometimes we have succeeded in convincing them that we can do something to improve the quality of life of the child.”—HC-14

They also noted that in Ghana’s healthcare setting, caregivers (families) commonly deferred the decision-making process regarding the treatment of their child to the expertise of healthcare professionals.

“But, the majority, overwhelming majority of our patients will absolutely give the autonomy to the treating doctor saying, “you do for my child what you think is best”. I don’t think it’s a lack of understanding. It is just a state of helplessness. Because if they walk out of my ward now, they have nowhere else to go. They have absolutely nowhere… [to go] unless they said, they are now going to try prayer, they are going to try this… But they walk out understanding that this place [Komfo Anokye Teaching Hospital] or Korle-Bu [Teaching Hospital] is the only answer conventionally for their child.”—HC-1

The healthcare professionals recounted negative experiences where some fathers blamed the mothers and/or her family for the health condition of the child especially where there were preexisting marital difficulties. These accusations were noted to further strain family relationships and in some instances the fathers abandoned the sick child entirely.

“Sometimes, the fathers, somehow respond to some of these cases like the mother should be the one to take care of the child. They can make some statements like 'you have allowed my child to fall sick.' And I’m like 'Mr. you can’t say that. Some of these conditions, we don’t really know how it happens, but it has happened. The mother, who carried the child for nine months and is supposed to be attached to the child very well, can she do that deliberately?' Before you bring their minds to it. Sometimes too the extended family is worse!”—HC-11

Subtheme 2.2: societal perceptions and health literacy

Low literacy rate and low health literacy levels were reported as major factors which led to the poor understanding of pediatric CNS tumors amongst patient caregivers and the Ghanaian populace, including policy makers. There was a common perception among the general population that cancer predominantly affects adults rather than children. Furthermore, since CNS tumors were thought to be rare, public education had primarily focused on cancers which were believed to commonly affect adults, such as prostate and breast cancers. This made it difficult for caregivers to accept or cope with a CNS tumor diagnosis in a child. They refused to accept that it is a physical condition and instead traced it to spiritual causes. In many instances they did not immediately report to the cancer treatment center when given a referral after the initial diagnosis was made. Instead, they visited other peripheral health facilities which do not have cancer diagnostic or treatment capacity, hoping for a different opinion.

“… Even though these days a lot of people are having [educational] opportunities, a lot of people are still not literate. No matter how you come down to their level to make them understand, some of them don’t still understand what you are talking about; What do you mean by there is growth? How did it come about? That is why they will always think about this; then it’s spiritual; somebody did something to my child, that is why the child has had this; this can’t be normal; Why will my child at this age have a growth in the brain that is affecting…? Somebody wants my child to die; Somebody wants to cause me pain. So the first thing most parents will think about is a spiritual cause. …. It makes it quite difficult for them to understand that it is something that exists. There is science to it.”—HC-13

Participants also felt the health literacy rates were much lower among people from northern Ghana compared to southern Ghana as public health education efforts were largely focused on the south.

“From my experience, I can say that people coming from the North, Savannah, those places with such conditions, they usually turn to these mallams, these herbs, any condition regardless, before they come to the hospital. And it’s simply because of the education. Simply, I think that education is being done in the southern aspect more than the northern aspect of our country. So you’ll realize that southerners know more about certain conditions than them and sometimes, it’s the language barrier.”—HC-11

There were misconceptions associated with brain and spine surgeries. Some caregivers of pediatric patients as well as adult neurosurgical patients had the perception that operating on the brain causes some form of damage and the individual was no longer “normal”. This perception did not seem to be related to the location of the brain pathology or post-surgical complications. Caregivers were therefore reluctant to consent to surgical management even when the tumor is amenable to surgery.

“I believe it’s a bit abstract and once you say you are touching the brain, they have the mindset that the child will never get back to his or her normal state ever again. Even in the adult patients, sometimes you tell them there is a problem with the brain and the spine that we have to attend to and they think they may never get back to their normal state of life again because the spine and the brain should never be touched at all.”—HC-15

The healthcare professionals acknowledged that there were challenges with accessing the healthcare system, especially the teaching hospitals, partly due to the existing inefficiencies with patient workflow. This together with the public’s perception that neurosurgical oncology is associated with poor outcomes made people reluctant to seek medical treatment when diagnosed with CNS tumor and other types of pediatric cancer. Furthermore, caregivers/parents whose children received a tumor diagnosis were often discouraged by other parents from pursuing medical treatment but rather urged them to seek alternate sources of treatment including spiritual healing. Such recommendations usually stemmed from multiple reasons including lack of confidence in the healthcare system’s ability to provide quality care and perceptions of unfavorable treatment outcomes.

“The perception about neuro-oncological services is that people think that the success rate is low and therefore they are not willing to subject themselves to it. And for those who do not know about it, they wouldn’t also want to go in and see what will happen. Most of the time they have their own expectations and when those expectations are not met then that is it, they will even discourage other people from going for it. So that is what happens.”—HC-13

Subtheme 2.3: spiritual beliefs and influence

Very notable in the healthcare professionals' responses was the deep trust the populace had for spiritual leaders irrespective of the religion they belonged to or their level of education. Most caregivers strongly believed that their children’s disease was of spiritual origin and spiritual leaders possessed supernatural powers to heal their children.

“And sometimes they also associate it with spirituality so she will go and sit at 'Pray for me' and some of these churches for months. Then when their so-called pastors see that the children are dying then they will give them money to come [to the hospital]. And sometimes when they come, they [spiritual leaders] are like “I’m praying for you! I’m praying for you!” and support them sometimes financially. And other times, when they [caregivers] come and they call them [spiritual leaders], it doesn’t even go through.”—HC-11

Caregivers discussed their challenges with their spiritual leaders and followed their directives religiously. As such, spiritual leaders had a significant influence on the medical decision-making process including the CNS tumor treatment approach accepted by caregivers. The healthcare professionals also felt that within the Christian religion specifically, some church denominations placed a lot more emphasis on spirituality than others and that determined how those who belong to that faith approached healthcare issues.

“At the back of this is both culture and tradition clouded by religion. Religion again plays a significant role in what people and who people trust. So, they trust their religious leaders whether Christianity, Islam, African traditional religion and all others. They have more hope and trust in them. They [spiritual leaders] have supernatural abilities, we [healthcare workers] don’t have supernatural abilities, so they trust these supernatural abilities. This makes everything very difficult, so you need to break through this barrier before you can get to them to understand that this [medical care] is potentially superior or complementary so focus here first before you go to the other side.”—HC-2

Theme 3: human impact of structural and social barriers to care

The systemic and sociocultural barriers to neurosurgical-oncologic care had profound implications for both pediatric CNS tumor patients and their caregivers. This included poor treatment outcomes, psychological effects, and financial toxicity. Additional quotes illustrating this theme are presented in Table 4.

Table 4.

Example quotes supporting Theme 3: Impact of structural and social barriers to care

Overarching theme	Sub-themes	Supportive quotes
Impact of structural and social barriers to care	1. Impact on pediatric CNS tumor outcomes *All eight participants contacted endorsed this subtheme.	“Most of them do try to go to churches for pastors to pray, give them directives and would want to spend time praying and praying, trying to revert situations…. And some people will also want to go and try herbal, thinking that they can be given something that will melt the tumors. So, after spending time there and they do not see any improvements and their wards get into bad conditions then they come to the hospital.”—HC-13 “…there are many of them and in fact a large majority of them will present late and they will present at times when they are in end stage or terminal stage. And to compound it the problem is also the fact that they don’t have the financial means to do all the investigations. So it puts a lot of barriers in the way of the surgeons. Many at times we just have to palliate them, and the outcomes are poor, they don’t survive most of the time…. But when we have late presentations and also unavailable or inaccessible or unaffordable investigations, it makes it very difficult to push. And then how long will you push?”—HC-14 “Late presentation means poor outcomes. Many of them are unable to make it. Others come with advanced disease that we could only palliate. And remember that our surgical team if the disease bulk is so much, they cannot do the techniques that should be able to completely excise the tumor as much as possible. And that also means that cure will not be possible. The delays really affect this, and it’s linked to poor outcome.”—HC-1
	2. Psychological and financial implications *All eight participants contacted endorsed this subtheme.	“There are a lot of children in the family when the mother is young, and she has six of them and one is sick and the others are small. She may also be pregnant at the time. She doesn’t just have that much time to pay that particular attention to the child, the sick child.”—HC-3 “And with these tumors, it’s quite difficult for them … they go through a lot of stages. It takes patience and love to be able to take care of these children or these patients. But they are unable to show them a lot of care not because they don’t want to but because they are tired. They are drained so indirectly, it affects them psychologically and emotionally and all that…. But let me say the parents or the family are not able to show [love], not that they don’t love their children, but they are unable to show it because they are all focused on finding money to come and sort you out. The children also feel that isolation or that emotional neglect.”—HC-11 “What do you do as a parent when you know the disease is advanced? When you’ve already spent all your resources in arriving at the answer to the question as to what I am dealing with. Now you are faced with the next step as to you need this amount of money to buy this drug, you need that amount of money. And we are not sure what the prognosis is. So, this parent now has to take a very difficult decision. Remember they may have spent all their resources, and they have other kids at home.”—HC-1 “There’s a lot of psychological traumas attached to it knowing the prognosis. Some of them go home and they are virtually dependent. They can’t do anything for themselves, and parents probably have to stop working so that they can take care of them. Sometimes they do call, we have a work line, we handle it. Some will call, they are overwhelmed but there isn’t much you can also do, all you can do is to offer some psychological support.”—HC-13

Subtheme 3.1: impact on pediatric CNS tumor outcomes

Time to patient presentation at KATH after initial symptom onset ranged between 2 months to a year according to participants. Late presentation was influenced by the ineffective referral system, limited diagnostic infrastructure, and poor healthcare-seeking behaviors.

Even the delay within the health care system can take you like two, three months before they even get to us [KATH].”—HC-10

“…I will say mostly like six months, there about. Because for our part of the world we mostly have issues with getting access to the tertiary health facilities or the maximum healthcare services. And by the time the child is being referred to a higher facility for further investigation to be done for it to be diagnosed that indeed it’s a tumor, it would have taken a considerable amount of time or even a year.”—HC-6

Some caregivers sought medical care as the last resort after spending a considerable amount of time seeking spiritual healing or using herbal treatment without seeing much improvement in the child’s condition. As such, many patients reported with advanced disease with poor prognosis and treatment outcomes.

“By the time they get here [KATH] it is usually late or advanced in the progression of the disease requiring even higher skill and knowledge and ability to care for them. That delayed care can compromise or significantly compromise patient outcome. And with poor outcomes it’s perceived that 'oh children with this kind of disease don’t get well or they are not going to get well.' So, then the cycle perpetuates itself so why should you bring the child here if the child is not going to get well anyway, so then they seek…”—HC-1

Subtheme 3.2: psychological and financial implications

Some children diagnosed with CNS tumors faced physical and/or emotional neglect which was influenced by multiple factors. Often, the patient’s mother had the primary responsibility of taking care of the sick child, which was overwhelming. It was challenging for her to give the child her full attention, especially if she had additional family responsibilities and work demands.

“There are some who have other children to attend to, and so if you [sick child] are not able to do things by yourself, they will just sideline you and then attend to the others. There are also others who are also occupied with maybe the jobs that they do. And so, they spend so many hours outside the house, and they are not able to pay attention to such children.”—HC-5

Additionally, navigating pediatric CNS tumor diagnosis and treatment was emotionally and financially draining for parents which affected how they relate to the child and their ability to follow through with treatment recommendations. Parents had often depleted their financial resources and were focused on finding additional resources to cover the outstanding cost of care rather than spending time with the child.

“When they come to the hospital, sometimes it’s not that they don’t want to put in a lot of effort, they put in a lot of efforts. Some will even sell their properties just to get treatment for their children. But because of the challenges, the outcome is already poor so sometimes they see very little improvement. And those who do not have the financial muscle to push the treatment through, they will not go along with the clinical team and there is the tendency to always request to be discharged against medical advice. These are common things that we see.”—HC-15

Additionally, the child’s broader social interactions were often significantly limited due to both the functional limitations associated with the disease as well as societal stigmatization. All these factors contributed to the child feeling neglected, which impacted his/her emotional well-being.

“…the society is not really accepting you because of your child’s condition. Indirectly, the affected families face difficulties in the society. And they in turn bring that home and the child is the one that suffers. In our Ghanaian communities, children from the same vicinity play a lot. Usually, you see them going to one school and probably going to even one church. But when the child has such a condition, it becomes difficult for the child to engage in some of these social activities. And their parents are also unable to socialize well because they are already being discriminated against. You don’t want to always be fighting because of this so let me stay in my own corner.”—HC-11

Discussion

This qualitative descriptive study is the first to document the holistic perspective of healthcare professionals regarding factors impacting pediatric CNS tumor care in Ghana. The results indicate that the major barriers to care were the limitations of the Ghanaian health system and societal structures and norms which negatively impacted treatment outcomes.

The study identified several health system-related issues which serve as major barriers to timely pediatric neurosurgical-oncologic care. Currently, pediatric neurosurgical-oncologic care is primarily available at 2 neurosurgical referral centers in Ghana, KATH and KBTH. Greater Accra Regional Hospital (GRH) currently offers some services with complex cases referred to KBTH. This has created a multifaceted problem where these cancer treatment centers are overburdened with the patient volume, patients must travel long distances for care, and caregivers are sometimes forced to rely on local primary and secondary centers of healthcare even when persistent symptoms suggest further evaluation at a tertiary center.¹⁴ In Ghana, healthcare is mainly provided at 3 levels, namely primary, secondary and tertiary; however, primary and secondary health facilities are not well resourced to handle complex medical and surgical conditions.¹⁵ The lack of diagnostic infrastructure and in some instances the poor clinical judgement on the part of providers in peripheral healthcare facilities led to significant challenges in diagnosing pediatric CNS tumors, which resulted in misdiagnosis and delays in presentation to KATH.

Furthermore, OOPs remain prohibitively high mainly due to inadequate national funding, creating barriers to neurosurgical-oncologic care. The healthcare professionals reported that most patients are from low socioeconomic status and may rely on the extended family for financial assistance for their healthcare expenses. This is consistent with findings from previous studies which identified financial constraints as a major barrier to neurosurgical-oncologic care.^6,7 Ghana implemented the NHIS in 2003 which is currently facing numerous challenges.¹⁶ The NHIS was designed to have a large benefit package covering 95% of the diseases common in Ghana and exemption policies for vulnerable populations, including children less than 18 years.^17,18 This was aimed at eliminating inequities in healthcare access and utilization and improving healthcare seeking behaviors of Ghanaians.^18,19 However, studies show that there are financial and administrative challenges impacting the effective implementation of the scheme leading to poor coverage and high OOPs.²⁰ The sub-theme on healthcare financing corroborates these earlier study findings. The healthcare costs associated with neurosurgical-oncologic care in most cases causes financial toxicity for families and adversely impacts their mental health.²¹

In addition to finances, the healthcare seeking behavior of Ghanaians is heavily influenced by their sociocultural and spiritual beliefs. The healthcare professionals raised concerns regarding the low health literacy levels of Ghanaians even among educated folks, including health policy makers, especially as related to CNS tumors and cancers in general. Cancer has been labeled as an “adult disease” and hence its diagnosis in a child may be attributed to unnatural causes including curses and spiritual causes. A significant amount of time and resources are spent pursuing alternative care such as traditional and/or spiritual healing prior to seeking medical care, which leads to patients presenting with advanced stages of disease. In many instances, the decision to seek medical care is made by the father, governing family member, religious leader or traditional healer. This is consistent with findings from previous studies which showed the high usage of traditional medicine and engagement in spiritual healing practices such as prayer, meditation, and consumption of alternative medicine products among Ghanaians independent of literacy level, religious affiliation, and health insurance status.^22–25 Comparatively, this practice is relatively more common in Northern Ghana than Southern Ghana where there are lower rates of literacy and health literacy.²³ The data concurs with the finding that high literacy levels do not necessarily translate into high health literacy.²⁶ Other studies conducted in Ghana have shown a relationship between health literacy and health seeking behaviors with those with high health literacy levels more likely to seek medical care in a timely fashion emphasizing the importance of public health education.^27,28

Beyond the belief system at the individual and societal level is dissatisfaction with the healthcare system and neurosurgical-oncologic outcomes. Accessing healthcare at the tertiary level is perceived to be extremely cumbersome due to multiple reasons including the long wait times, poor coordination of care, and poor communication between the healthcare team and patients.^29,30 Quite notable was the widespread skepticism about the effectiveness of orthodox treatment of CNS disorders and pediatric cancers among caregivers. This largely stems from the community’s experiences with poor treatment outcomes as well as misconceptions and myths regarding brain surgeries.^31–34 In the Ghanaian society, the family and community are a crucial social support system and may influence the caregiver’s decision to seek medical care or continue medical care.

Implications for Policy and Practice

This study provides deeper insights into the complex challenges of poor access to pediatric neurosurgical oncologic care which is rooted in several interconnected determinants. The findings provide valuable insight underscoring the importance of adopting a systems thinking approach to addressing barriers to care. Currently, neurological surgeries and cancer treatment, with the exception of neurological emergency surgeries and breast and cervical cancer treatment, are not formally included in the NHIS package.³⁵ Childhood cancer advocacy efforts recently led to the addition of 4 common childhood cancers, namely Acute Lymphoblastic Leukemia, Burkitt Lymphoma, Retinoblastoma, and Wilms Tumor, to the NHIS benefits package; however, these cases still incur high OOPs, which may stem from unauthorized hospital charges.^18,20,36 Delayed reimbursements to health facilities by the National Health Insurance Authority (NHIA) has been cited as a major reason for OOPs not authorized by the Ministry of Health.^37–39 Currently the benefits package excludes CNS tumors even though it is one of the 6 key childhood cancers (CNS tumors, Burkitt’s lymphoma, acute lymphoblastic leukemia, Hodgkin lymphoma, retinoblastoma, and Wilms tumor) targeted by the World Health Organization and partners' initiative for improvement in outcomes in LMICs.^40–42 It is imperative that provisions are made to include CNS tumors in the NHIS package to decrease OOPs and help eliminate financial barriers to care.

There is a compelling need for culturally sensitive public health education on pediatric CNS tumors to both educate the public and correct the sociocultural and spiritual beliefs and misconceptions about the condition. Public health education may include media campaigns to create awareness of pediatric CNS tumors and other neurosurgical conditions and the provision of health information materials translated into local languages with the relevant cultural adaptations. This will ensure that health information is readily accessible and help improve health literacy levels especially in northern Ghana. Beyond providing education to communities, there is a need for targeted health education approaches for specific groups including spiritual leaders, community leaders, policy makers, and other stakeholders who influence decision making processes. This will ensure that they recognize pediatric neurosurgical-oncologic care as a pressing health issue and are equipped with the right knowledge and information to engage in advocacy and grassroots lobbying to drive policy changes.⁴³

To improve early diagnosis and referral for expert management, it is imperative to implement regular pediatric oncology and neuro-oncology training for general practitioners and other providers in peripheral facilities in addition to the provision of diagnostic infrastructure. This will provide them with both foundational clinical knowledge and skills as well as diagnostic capabilities for early detection and prompt referral for expert management. There is a crucial need to decentralize neurosurgical-oncology treatment services beyond Accra and Kumasi by establishing additional treatment centers in other regions. It is also essential for the Ministry of Health to develop standardized referral protocols and guidelines to reduce delays in diagnosis and misdiagnosis. This along with effective communication between providers in the periphery and the neurosurgical-oncology team at the major cancer treatment centers will optimize the referral process and ensure patients do not fall through the cracks. Currently, the pediatric oncology team at KATH has taken the initiative to connect with peripheral providers in the Kumasi subregion via the WhatsApp Messenger group platform to enhance communication and facilitate treatment and referrals of pediatric oncology cases. The existing network needs to be expanded to connect providers in other regions to the pediatric oncology teams at the major treatment centers. The establishment of a pediatric neurosurgical-oncology patient navigation program will be a critical component of improving access to pediatric neurosurgical oncologic care. Through this program, pediatric CNS tumor patients and their caregivers will be connected to trained patient navigators who will provide psychosocial support and help them navigate their care.⁴⁴

Although the study provides interesting insights into the intrapersonal, interpersonal, societal-level and systemic barriers to pediatric neurosurgical-oncologic care, it is not without limitations. The study only sampled health professionals at KATH, with the stated purpose of generating an in-depth understanding of patients' experiences and beliefs versus generalizability of study results to the broader population of Ghana. That notwithstanding, KATH has a large catchment area covering pediatric neurosurgical cases from 14 out of the 16 regions in Ghana, which is representative of the country’s pediatric population.³¹ Hence, the perspectives shared by healthcare professionals interviewed were based on interactions with patients from a wide range of geographical locations. The perspectives from healthcare professionals in other cancer treatment centers are likely to be similar due to similarities in healthcare infrastructure and patient populations.⁴⁵ The study was limited to a sample size of 15; however, the study cohort included the core and ancillary pediatric neurosurgical oncology team who provided varied perspectives regarding pediatric CNS tumor care. Participants were also very detailed in their responses and provided extensive relevant information on crucial issues. Data saturation was reached, which supports that the sample size was adequate.

Finally, the study findings are subject to potential social desirability bias as participants were employees of the study institution and may have provided answers they perceived to be institutionally acceptable rather than their true opinions. To help mitigate this, participants were assured of confidentiality of the data, including keeping their identity anonymous, ensuring that no identifying details were connected to their responses which may have contributed to the detailed responses they provided. While the reported systemic challenges impacting timely pediatric CNS tumor care in Ghana may be remarkably similar to other African settings, there are still many contextual variations and significant differences across the different countries especially as related to the political landscape, sociocultural factors, and spiritual belief systems. Thus, further studies are needed to uncover the nuances specific to each country to guide capacity building efforts across the African region and other LMICs.

Conclusion

The study adds to our understanding of the multifaceted barriers associated with pediatric neurosurgical-oncologic care in Ghana and how these barriers interact to impact treatment outcomes. A pediatric CNS tumor patient navigation program is urgently needed to decrease the median time to diagnostic neuroimaging and treatment initiation. The study findings can help guide a comprehensive approach to designing and implementing capacity building interventions to improve access to care.

Supplementary Material

Supplementary material is available online at Neuro-Oncology Advances (https://academic.oup.com/noa).

Author Contributions

Study conception and design: J.H.C and L.S.G. Data collection: L.S.G., A.L., and J.A.G. Verification of transcripts: J.H.C., L.S.G., A.L. Data coding and analysis: J.H.C., L.S.G., A.L., J.A.G., J.B. Data interpretation: J.H.C., L.S.G., A.L., L.O.T., F.N.B., D.A. Data visualization: J.H.C. Writing—original draft: J.H.C. Writing—review and editing: J.H.C., L.S.G., A.L., J.A.G., J.B., V.P., D.A., M.C.D., F.N.B., L.O.T. All authors read and approved the final manuscript.

Conflict of Interest Statement

The authors have no competing interests to declare.

Funding

No funding was received for conducting this study.

Data Availability

The data generated and analyzed during the study are not publicly available due to ethical restrictions to protect participant privacy. Relevant excerpts of the dataset are included within the manuscript text and supplemental file to support the study findings. The full underlying data may be available from the corresponding author upon reasonable request and subject to ethical approval and data sharing agreement.