Future Fertility Among Pediatric Cancer Patients: Experiences and Perspectives of Health Workers in a Low-Resource Setting

Abstract

Purpose:

Although fertility preservation for patients with childhood and adolescent cancer is considered standard of care in the high-resource settings, it is rarely offered in low-resource settings. This study explores the experiences and perspectives of oncology health care professionals in Uganda to identify contextual barriers and facilitators to addressing oncofertility in low-resource settings.

Methods:

Using ground theory, we conducted in-depth face-to-face interviews of health care professionals managing pediatric patients at the Uganda Cancer Institute (UCI). Using a systematic, semi-structured interview guide, participants were asked open-ended questions about their understanding of fertility preservation and their perspectives on implementing this care at their institution. Although all the eligible health care providers were interviewed, interview transcripts were uploaded into NVivo version 12 and openly coded as per theoretical requirements. Codes were refined into categories and later into structured themes.

Results:

Twelve health care professionals were interviewed. Most participants identified as female (n = 9). Their role in the medical team varied from nurses (n = 6), medical officers (n = 3), pediatric oncologists (n = 2), and pediatric oncology fellow (n = 1). Six themes were noted as follows: (1) importance of information, (2) importance of future fertility, (3) inadequate consideration to future fertility, (4) communication barriers, (5) inadequate knowledge, and (6) resource barriers.

Conclusion:

Although health care providers at the UCI face contextual barriers to addressing future fertility among patients with pediatric cancer, they value preserving fertility in this population. Future initiatives that aim to introduce oncofertility care in low-resource settings should prioritize educating providers and building capacity to meet the oncofertility needs in this setting.

Background

Childhood and adolescent cancer incidence has increased globally.¹ There remain disparities in incidence,² survival, and long-term morbidity rates,^3,4 with children in low-resource settings facing poorer outcomes. These differences are attributed to concordant disparities in resources that enable a timely diagnosis, adequate treatment, limited toxicity, and accessible health care.^2–4

Nonetheless, medical advancements have improved survival rates in low-resource settings. For example, in Uganda, the 3-year survival rate of Hodgkin’s disease is at present at 86%.⁵ This increase in survival has led to a shift in focus to quality of life for childhood cancer survivors. Improving quality of survivorship brings into focus cancer treatment modality-specific long-term effects.⁶ Survivors of childhood cancer are at the risk of reproductive failure, characterized by delayed puberty, hormonal deficiencies, ovarian failure, impaired spermatogenesis, and pregnancy complications due to the side effects of treatments.⁶

The emerging field of oncofertility aims to address the future fertility needs of patients with cancer.^7–9 The options for fertility preservation in childhood and adolescent survivors include sperm, egg, or embryo freezing in young adults and gonadal tissue freezing in prepubertal patients.^7,8 Although widely accepted as standard of care in many high-resource settings,^10–12 oncofertility in childhood and adolescent survivors is yet to be realized in low-resource settings such as Uganda.

We have recently reported a higher infertility rate, compared with the background rate, among adolescent and young adult cancer survivors in Uganda.¹³ Nearly all survivors reported having no or an unsatisfactory discussion about future fertility with medical providers during their cancer treatment.¹³ Consequently, none of their future fertility needs had been addressed.¹³ Despite this, the majority of the survivors agreed that they would not be satisfied with their lives if they would not be able to have children.¹³ Furthermore, parents or caregivers of children treated for cancer receive inadequate information about their child’s future fertility.¹⁴ In addition, these parents valued a multifaceted model of shared decision-making that emphasized accurate information, respect of autonomy, and psychosocial support.¹³

This work underscores the importance of understanding context-specific factors that may influence addressing future fertility among childhood and adolescent cancer survivors in Uganda. This study explores health worker and institutional factors that may enable or hinder addressing future fertility. It does so by examining the experiences, perceptions, and attitudes among health workers, toward addressing future fertility at the Uganda Cancer Institute (UCI).

Methods

Design

This study used the synthesized approach to grounded theory described by H-Y Chen and JR Boore,¹⁵ as described in our published protocol.¹⁶ This multistep approach involved Strauss and Corbin’s style of theoretical sampling and memoranda writing, Strauss and Corbin’s and Glaser’s definition of theoretical sensitivity, Charmaz’s memo-writing and data collection, Glaser’s wide range of selected theoretical coding families, and Glaser and Strauss’ criteria for theoretical saturation.¹⁵

The study team consisted of an early career researcher and reproductive medicine specialist; three clinical researchers with expertise in reproductive medicine, gynecology oncology, pediatric gynecology, and pediatric oncology; a medical student and an undergraduate student who received training in qualitative research; an expert in qualitative methodology, including grounded theory; and an expert in cancer epidemiological surveillance.

Interviews and concurrent data analysis were conducted from November 1, 2021, to February 26, 2022. The structured themes were completed by January 12, 2023.

Setting

The UCI is Uganda’s only tertiary cancer treatment facility. It is the only center in Uganda providing dedicated pediatric oncology services, with an estimated 600 new pediatric cancer cases per year. The oncology care team consists of oncology nurses, medical officers (general practitioners), pediatric oncology fellows, and pediatric oncologists. Available options for cancer treatment at the UCI include chemotherapy, radiotherapy, and surgery. There is at present no dedicated childhood cancer survivorship or oncofertility program.

Study population

As described in the protocol,¹⁶ we interviewed all health workers attached to the pediatric oncology department. Excluding one of the coauthors and two research nurses, the study sample had 12 health workers, which included the following: oncology fellows (2), pediatric oncologists (1), medical officers (3), and oncology nurses (6).

In-depth interviews

The in-depth interviews were conducted with the help of an interview guide (See Supplementary Data S1). This guide was a set of systematic, semi-structured, and open-ended questions, as described in the protocol.¹⁶ Before the study, the guides were pretested on five eligible participants to address question clarity, acceptability, and understanding. Subsequently, all health workers were interviewed by research nurses trained in conducting in-depth interviews. The interviews were recorded, and field notes were taken to document observed nonverbal behaviors.¹⁶ Theoretical saturation of the data¹⁷ was used to determine the maximum number of in-depth interviews conducted among the 12 health care providers.

Data management and analysis

All the recordings were transcribed verbatim and translated into English, as described in the protocol.¹⁶ The resulting transcripts were uploaded into a qualitative data management tool (NVivo version 12 by QRS International). NVivo qualitative data management software allowed for a simplistic, structured, and reproducible way of organizing audio interview files, transcripts, participant demographics, and code books. This increased throughput data analysis allowing for nuance comparisons and deductions to be made in real time on the same program. Furthermore, NVivo allowed for multiple coders to easily access and group code, merge, or share files. This intern increased the accuracy and speed of qualitative data analysis.¹⁸

Using theoretical sensitivity and inductive coding, each transcript was coded three times by a team of three investigators, using the participant’s own words, and analyzed in a multistep systematic manner as required by the synthesized method of grounded theory.¹⁶

In sequential order starting with line-by-line in vivo coding using the participant’s own words, shorter word phrases were developed that captured the true meaning of the participant’s words. Similar coded phrases were grouped, and concepts developed. Subsequently, these concepts were grouped and refined into categories and later theoretical coding families. These families were used to isolate concepts and connect them in different ways. This enabled the establishment of new category connections and definition of subcategories. This was followed by linkage among categories and definition of core categories. The core categories lead to the discovery of the basic social process underling the phenomenon. The core categories are presented as themes and their child subthemes.¹⁶

Intercoder consensus was systematically achieved, by standard comparisons between coded phrases and code-by-code analysis for differences. The agreed-on code book and intercoder agreement were used to resolve residual intercode discrepancies.^17,19 Other tenets of reliability included the following: reflexivity among authors, critical feedback among authors, peer examination, peer briefing, using participant’s own words, consistency in the interview guide across interviews, and an audit trail throughout the research process.¹⁶

Ethics approval

The study was reviewed and approved by the UCI, Uganda National Council of Science and Technology, and the University of Minnesota Institutional Review Boards.

Results

Participant characteristics

Twelve participants were included in the study, as summarized in Table 1. Most were female (nine), and the mean age was 35.3 years. Participants were most commonly married (six). At least five religions were represented, the most common being Catholic (four). The greatest proportion of the sample identified as nurses (six), with smaller numbers of medical officers (three), oncologists (two), and senior residents/fellows (one). Participants most frequently had between 1 and 5 years of practice experience (six).

Table 1.

Participant Demographics (N = 12)

Characteristic	Mean (SD)	Count	Percentage
Age (years)	35.3 (5.4)
Gender
Male		3	25
Female		9	75
Marital status
Single		2	17
In a committed  relationship		4	33
Married		6	50
Religion
Anglican		2	17
Catholic		4	33
Muslim		2	17
Pentecostal		2	17
Other		2	17
Occupation
Nurse		6	50
Medical officer		3	25
Oncologist		2	17
Senior resident/ fellow		1	8
Duration of practice
1–5 years		6	50
5–10 years		2	17
More than 10 years		4	33

SD, standard deviation.

Themes

Emerging themes from interview data were grouped into the following six categories: (1) importance of information, (2) importance of future fertility, (3) inadequate consideration to future fertility, (4) communication barriers, (5) inadequate knowledge, and (6) resource barriers. The subsequent themes and subthemes within each category are summarized in Table 2.

Table 2.

Summary of Themes and Subthemes

Theme	Subthemes
Importance of information	You explain everything
	Parents are fully involved
	Children are not really involved
Importance of future fertility	Expecting patients to have a future
	Effect of cancer treatment on future fertility
	Incorporating fertility preservation
Inadequate consideration to future fertility	We do not do much about fertility
	The first priority is survival
	There is no alternative
Communication barriers	Parents are not learned
	Language barrier
	Withhold some of those news
Inadequate knowledge	Not knowledgeable enough
	We need to be educated
Resource barriers	Personnel are few and limited
	The biggest challenge I see is funds

Importance of information

This theme encompasses present practice regarding interactions between health workers and children with cancer and/or their parents. It highlights health workers’ experience providing information about the diagnosis, treatment, and side effects to patients and/or guardians during diagnosis, treatment, and follow-up. Three subthemes emerged as follows: (1) you explain everything, (2) parents are fully involved, and (2) children are not really involved.

You explain everything

Participants irrespective of the clinical role considered comprehensive counseling to be the cornerstone of oncology care. They agreed that a detailed explanation of the processes of diagnosis, its significance, and the timeline of care was important to build trust and ensure adherence to care. Participants stated that they provide extensive information regarding the drugs the child is to receive and the expected side effects. In addition, they provided this information at diagnosis and during follow-up, specifically to parents and older children, so that they would know what to expect. This quote from a nurse illustrates this narrative:

Um, during these talks, uh, especially when the child is going to start chemotherapy, um, I, the nurses tell them exclusively about the treatment. Uh, they tell them about what they expect, … the side effects of the chemotherapy, yes.—Participant 8 (Nurse)

In addition, they perceived that adequate information fostered informed consent. Although they did not discuss it, they acknowledged the importance of information about future fertility to prepare the patient and family. The quote from a general doctor illustrates this narrative:

Yes, patients especially parents and maybe big children should be aware … of the outcome of … this treatment and how we can answer … this question “I want my child to produce in the future? though you’re saying you’re going to give this medicine” … so all those questions should be answered in the beginning and look at alternatives.—Participant 1 (General doctor)

Parents are fully involved

All participants reported that they provide adequate information regarding diagnosis and treatment outcomes to the parents or guardian(s) of the child. They explained that it was the responsibility of the parent to ensure compliance with the treatment plan, such that empowering the parent with information in turn empowers the child. As a nurse explained:

The parents are involved. … I may say a hundred percent because these children don’t decide for themselves, and they can’t bring themselves to the clinics … it is their parents who come with them to the clinic.—Participant 5 (Nurse)

Children are not really involved

All participants acknowledged that only parents were counseled on cancer diagnoses and treatments. There was a lack of an established process on how to convey this information to children. Reasons for not engaging children included young age and parental decisions not to involve their child. This quote from a medical officer illustrates this narrative:

For the time I’ve been here on the pediatric ward, it has been parents … they are the ones who have been told about the conditions the condition of the child as well as the treatment ahh … then prognosis ahh. So far we have not yet involved the children that’s what I have observed.—Participant 1 (Medical officer)

A few health workers reported involving older adolescents when the parent or guardian consented to allow this counseling. Adolescents were perceived as being able to comprehend the discussion about diagnosis and treatment outcomes. A medical officer explained their reasoning:

I base on the age to involve the child into knowing their diagnosis usually teenagers are more inquisitive about that diagnosis and even if as you are talking to the parents they tend to listen in and try to understand what is going on with them because they do know that they are sick.—Participant 4 (Medical officer)

Importance of future fertility

This theme incorporates health worker attitudes and perceptions on the impact of cancer treatment on fertility, the importance of addressing future fertility in present practice, and the value of fertility to childhood cancer survivors. Three subthemes emerged as follows: (1) expecting patients to have a future, (2) effect of cancer treatment on future fertility, and (3) incorporating fertility preservation.

Expecting patients to have a future

Participants unanimously acknowledged that the goal of cancer treatment was to allow patients with pediatric cancer to have a normal life in the future. For some, reproduction was considered to be a key component of survivorship, and a cure that compromised future reproduction was deemed a failure of care. These participants argued that interventions to preserve fertility should be included in care. An oncology fellow described this view:

After survival the next thing that somebody’s looking at is having a family … in our setting probably these survivors of ours, they wake up to a very sad reality at that time when they want to have a family. Some of them may want to have a family, they are not able. It is very important if we can preserve fertility of survivors.—Participant 6 (Fellow)

Some participants highlighted how expectations and norms surrounding fertility in African cultures contribute to additional negative consequences of infertility. These participants noted that failure to address future fertility would subject survivors to a risk of domestic violence, marital discord, societal shaming, and ostracization. Participants reported that parents consenting to procedures involving reproductive organs also expressed these concerns. This quote from a nurse depicts this narrative:

Someone may go through cancer very well get well, but then they are unable to produce. And you know what happens in an African setting where we don’t have a child in marriage, we are going to see domestic violence … of course depression. If it’s a girl, we are going to see, um, blame, so it’s not an easy journey.—Participant 10 (Nurse)

Effect on future fertility

Some of the participants, particularly the physicians, acknowledged that the effects of cancer treatment such as chemotherapy, pelvic irradiation, and surgery on ovaries or testis could increase the risk of reproductive failure. A few also narrated cases of childhood cancer survivors who eventually had challenges with fertility. This quote from an oncologist depicts this narrative:

What I know most of the drugs that have platin .ahh carboplatin, cisplatin, and other. uh, drugs, mostly that do work on cancers … like ovarian cancer that have access to the reproductive system. They’re the drugs that mostly affect fertility. There’s, there’s the risk of children when they grow never, ever having children. Okay. Never fulfilling their reproductive goals. That much I know.—Participant 12 (Oncologist)

Incorporate fertility preservation

Participants recognized the need to change practice, revise guidelines, and build capacity to address protection of future fertility for childhood cancer survivors. They advocated for incorporating fertility preservation procedures within oncology workflows as long as they did not compromise survival. Participants acknowledged the need to discuss future fertility with patients and their families and to consider alternative regimens that are less toxic to reproductive organs. An oncology fellow’s narrative is illustrated next:

Yes it would affect care … to include consideration for all these foreseen complications therefore in that case your additions are going to be affected … ahh. The chemotherapeutic agents and probably any intervention that you want to use can be affected when you are also looking at that future fertility outcome as one of the outcomes that you think is important for this child.—Participant 6 (Fellow)

Participants recommended that guidelines and protocols be revised to incorporate reproductive counseling, alternative regimens, fertility consults, and reproductive testing. Most of the participants were open to all efforts to preserve fertility of childhood cancer survivors. They recommended incorporating procedures such as shielding reproductive organs, using of alternative regimens, and freezing gametes into existing guidelines. This quote from a nurse illustrates this narrative:

Um, we could preserve the cells that could be damaged during, during chemotherapy or by radiation, but we preserve maybe some sperms or some semen in that when the child has finished their chemo cycles, we can, we can get them back and they can have their kids normally. So, I would like to advise the parents or the children in the childbearing age about the preservation methods … if they take my idea, well and good I would have preserved their fertility somehow.—Participant 8 (Nurse)

Inadequate consideration to future fertility

This theme encompasses attitudes toward present practice regarding future fertility among survivors of childhood cancer. It also depicts the underlying factors, institutional and individual, that influence present practice. Three subthemes emerged as follows: (1) we do not do much about fertility, (2) the first priority is survival, and (3) there is no alternative.

We do not do much about fertility

Despite recognizing the importance of future fertility, all participants noted the absence of an established process on how to address it in present institutional protocols. Nearly all participants reported no consideration of future reproduction in their practice or a practice of following up with survivors of childhood cancer to assess fertility outcomes. Fertility specialists were not involved in treatment and follow-up protocols. Prior knowledge of the potential effect of cancer treatment on reproduction did not alter practice. Some cited reasons such as lack of technological support and poor survival. This quote from an oncologist illustrates this narrative:

We have our follow-up clinic, but do we ask about their reproductive issues? We don’t like, oh, it’s we have our 18–20-year-old, but we’re not asking them, are you sexually active? Are you planning to have a child? Are you having any issues erecting? You know, so we are not actively looking for the side effects. We never get to follow them up that long, you know, to know what they’re experiencing. Chemotherapy on the other hand, we actually give maximum doses really, frankly, when I prescribe chemotherapy for say a four-year-old child with AML, the thought of their fertility never crosses my mind at all, that is to be truthful.—Participant 12 (Oncologist)

The first priority is survival

The majority of participants consider the goal of cancer treatment to be survival, leading to a focus on providing effective treatment. Long-term consequences such as reproductive failure are realized later. Many admitted that future fertility never crossed their mind during patient recruitment, and it is not a factor in deciding treatment regimens. This quote from a medical officer illustrates this narrative:

Sometimes we tend to … ignore somethings actually about reproduction me personally I have not been giving it a keen interest because sometimes we are looking at is this child can this child live, you know at least the child is living no matter the outcome in terms of reproduction.—Participant 1 (Medical officer)

A few recognized the potential effect of cancer treatment on reproduction but perceived fertility preservation as a hindrance to cancer survival, as depicted by a nurse’s quote here:

We are looking at is improving the survival of this child or even prolonging the survival after treatment … Right? These days, there are very many options to fertility. If the child has life and has lost fertility, they have options like adoption. But if you have lost life because you’re preserving fertility, then you’ve not done anything.—Participant 3(Nurse)

There is no alternative

Some participants acknowledged that the lack of options for fertility preservation in children in low-resource settings prevented them from considering future fertility. They felt that reproductive failure was inevitable since they lacked options to preserve fertility. This quote from a nurse depicted this narrative.

The challenge is even when you tell this person that maybe because of the anti-cancer drugs, you may not have reproduction, but at that point there’s no alternative for this patient, … no way for us to preserve their fertility. He or she has to go through the treatment because they are diagnosed with cancer.—Participant 2 (Nurse)

Communication Barriers

This theme highlights perceived challenges in communicating about future fertility impacts and needs to patients and their families. Three subthemes emerged as follows: (1) parents are not learned, (2) language barrier, and (3) withhold some of those news.

Parents are not learned

Most participants stated that parents lacked medical and scientific knowledge about cancer and had a limited understanding of the impact of cancer treatment on future fertility. Participants perceived this lack of knowledge as a limitation to the interaction. As a result, some participants felt justified in limiting patient education to match the parent’s educational background, and to immediate side effects. A nurse narrated their experience, as depicted next:

You find most of the parents are not learned … and so, they won t ask much about such questions but even the learned ones it’s rare for them to what to ask these side effects of a child not what … bearing children … they just look on the part of side effects which are common and common ones are nausea and vomiting.—Participant 5 (Nurse)

Language barrier

Participants reported that language barriers and the limited availability of medical interpreters impaired effective patient engagement. Considering that the referral facility serves patients from various regions in Uganda, they added, not all patients speak English or Luganda, the language primarily spoken in central Uganda. A nurse narrated these challenges, as illustrated next:

Another thing that I have noticed is language barrier. Sometimes you get people from very far where it is really very, very difficult to make sure you explain that this person understands. You find that all the time, you have to look for someone and sometimes you even fail completely to get someone to interpret for this person. So, in such a case, you end up not delivering what you should have delivered.—Participant 7 (Nurse)

Withhold some of those news

This subtheme describes the practice of limiting the information about cancer treatment that is provided to patients, especially the potential long-term implications of treatment. Participants perceived that information about fertility was sensitive, and discussing the risk of infertility with a parent might jeopardize the child’s care, secondary to treatment abandonment. Consequently, they avoided discussing fertility. The quote below from a nurse and an oncology fellow illustrates this difficulty.

You also don’t want to make them lose hope completely so you don’t want to if I may call it release a bomb so sometimes true we tend to withhold some of those ahh news at the first time—Participant 6 (Fellow)

Some participants perceived that parents are overwhelmed by the initial medical information they receive regarding their child’s cancer. They added that a cancer diagnosis is emotionally distressing, and parents are not prepared to process information about future complications. As a result, participants withhold information about future fertility. A medical officer narrated this:

So, some people umm may not fully digest when we tell them at that time that the child has cancer and then you start explaining things that are going to happen 20 years later they are still digesting what is happening now so to them it may not feel like an emergency.—Participant 4 (Medical officer)

Inadequate knowledge

This theme depicts participants’ awareness of their own knowledge gaps about the effect of cancer therapies on fertility and approaches to fertility preservation. Their lack of opportunities to learn about oncofertility led to them giving little thought to the future fertility needs of patients. Two subthemes emerged as follows: (1) not knowledgeable enough and (2) we need to be educated.

Not knowledgeable enough

Although a few participants were knowledgeable about menstrual cycle disturbances resulting from chemotherapy, many participants admitted that they lacked basic knowledge about the future fertility impact. They were unaware of the types of therapies that impact reproduction, the specific effects on fertility, and how the effects could be reduced. This prevented them from adequately engaging with patients and/or guardians and incorporating fertility preservation strategies into care. A medical officer narrated his lack of knowledge about the future fertility needs and fertility preservation among childhood cancer survivors, as depicted next:

Hmmm am not going to commit myself as I say that I am not really keen on that or I haven’t read much or haven’t learnt a lot maybe … it is also a challenge on my side to go an extra mile to know that so I won’t commit myself.—Participant 1 (Medical officer)

We need to be educated

Participants were eager to learn more about oncofertility and fertility preservation. They saw clinical education as a key step to implementing fertility preservation in their clinic. Participants noted that even if it were not possible to offer fertility preservation to patients, this education would still help them inform patients about fertility expectations. Workshops, seminars, and continuing medical education (CME) opportunities were suggested to provide education. A nurse shared her thoughts on how awareness about fertility preservation could be increased, as depicted next:

I have not always thought about fertility preservation in children undergoing treatment, but after, after this session, I see it a very important thing that has to be addressed. So, um, I would urge my, uh, maybe my supervisors to put some CMEs, maybe to educate us about fertility preservation. Yeah. So that we can have more knowledge and we can know how to preserve the fertility of the children undergoing treatment.—Participant 1 (Nurse)

Resource barriers

This theme describes limitations in resources, including staff, funding, and time as barriers to addressing future fertility among childhood cancer survivors. Participants suggested that these practical limitations, which already strain standard clinical care, would need to be addressed before new models of care are introduced. Two subthemes emerged as follows: (1) personnel are few and limited and (2) the biggest challenge I see is funds.

Personnel are few and limited

Nearly all participants emphasized that the clinician workforce was stretched thin due to a high volume of patients and understaffing. This limitation already presented challenges in providing standard counseling and treatment. This they believed limited the time they had to engage with patients adequately on the potential long-term effects of treatment such as reproductive failure. They also anticipated that the workforce would be overwhelmed if oncofertility care was added to their responsibilities. A few participants highlighted the multidisciplinary care that cancer care requires, including psychosocial teams, nurses, oncologists, and fertility specialists. With the clinician workforce overburdened, some of the roles often go unfilled. Given the multidisciplinary nature of oncofertility care, this issue would present an even greater challenge. A medical officer described the challenges posed by understaffing, as illustrated next:

I think what may make it difficult is staffing … already counseling sessions take a lot of time. So, if we are adding this in the counseling session, it may take a lot of time … people may be hesitant to add more work on themselves.—Participant 9 (Medical officer)

Given the psychosocial complexities of infertility, participants emphasized the importance of counselors trained in this topic; however, such counselors were rarely available. A quote from an oncology fellow depicted this:

I think we take it as a very sensitive actually I would say so it is a sensitive ahhh issue that people shy away and that’s where the counseling comes I mean we lack expert counselors, who could come in handy.—Participant 6 (Senior resident/fellow)

The biggest challenge I see is funds

In addition to concerns about understaffing, some participants noted that the facility lacked funding for the personnel and equipment that would be needed for fertility preservation. They noted that patients had extremely limited financial resources and expressed the belief that fertility preservation was a privilege only available to facilities in high-resource settings. Accepting the reality of their limited financial resources, they instead focused on the primary goal of their work—“treating cancer.” This quote from a nurse illustrates this narrative:

It may be a bit expensive to bring in, into, to bring in place that equipment that is used maybe to collect the, to collect the fertility preservative, like the sperms but they may be expensive and they may not be able to afford them.—Participants 8 (Nurse)

Discussion

This study conceptualizes practice, facilitators, and barriers among health workers regarding addressing future fertility in children and adolescents with cancer in Uganda. These findings can inform the implementation of the oncofertility care program in this and other low-resource settings.

As part of routine practice, participants provided adequate information regarding diagnosis, treatment, and the immediate side effects to parents or guardians. However, counseling rarely addressed future fertility, confirming previous findings about parents’ perceptions of patient counseling for pediatric oncology in this setting.¹⁴ Furthermore, counseling prioritized informing the parent at the expense of the child’s involvement. Health workers in high-resource settings have also perceived patient age as a hindrance to shared decision-making regarding future fertility.^20–22 Parents in this setting and others act as gatekeepers of information for their child and consider information on cancer overwhelming to the child.^14,23 Parents in this population express similar concerns to health workers about their children being too young to comprehend discussions of future fertility.¹⁴ However, parents’ and health workers’ perceptions of the reproductive needs of patients with adolescent cancer often do not align with the adolescents’ own perspectives.^24,25

Participants acknowledged the importance of future fertility to children and adolescents with cancer as “a ray of hope” and offering a “return to normal.” They noted the substantial psychosocial consequences of infertility, particularly experienced by women.^26,27 Participants reported a lack of practices to consider future fertility; however, they highlighted a need to update institutional guidelines to incorporate fertility preservation.

Most participants were not aware of oncofertility. They prioritized cancer survival over long-term complications and considered fertility preservation to compromise survival. As in other low- to medium-resource settings,^8,28 a lack of awareness about the impact of cancer treatment on reproduction and poor survival outcomes were limitations to addressing any future consequences of treatment. The lack of technical expertise in providing options of fertility preservation for children with cancer that participants discussed has been reported in other low- to medium-resource settings.⁷ In addition, participants reported a lack of institutional fertility preservation protocols that is a common barrier to oncofertility in both low- to medium-^8,28 and high-resource settings.^22,29,30

Participants felt poorly equipped to discuss a topic as sensitive as fertility. Factors such as language barriers and perceived low literacy among parents exacerbated this barrier. Participants considered future fertility discussions to be time-consuming and complex. Often, participants withheld information about future fertility to avoid these challenges. Discomfort with the oncofertility discussion has been reported in high-resource settings.^22,30 Participants also avoided discussing future fertility out a fear that it would further overwhelm parents and lead them to refuse treatment.^26,27 Participants advocated for training, workshops, and continuing professional education to improve their ability to engage in future fertility-related discussions.

Participants noted that the inadequate health provider-to-patient ratio, inadequate number of counselors, and lack of fertility experts were barriers to addressing future fertility. Lack of oncofertility experts is a recurring phenomenon in other low- to medium-resource settings.^8,28 Furthermore, participants perceived the greatest challenge in addressing future fertility as funding inadequacy. They heavily emphasized the importance of funds to recruit staff, employ experts, build capacity, and provide fertility preservation options. Unfortunately, they were also cognizant of the practical realities of low-resource settings, where resources are focused on cancer survival. This phenomenon is similar to that among other low- to medium-resource settings.^8,28

Strength and limitations

This study utilized grounded theory,^15,31,32 which offers a novel perspective to explain the context that underlies addressing future fertility in a low-resource setting, for which we found limited qualitative accounts. It is also particularly beneficial in explaining the perspectives and experiences in health care.³³ Nonetheless, this study’s findings are unique to this setting and may have limited external validity subject to variations in the participant characteristics and context in other low-resource settings.

Implications for clinical practice and health policy

These findings justify a need to improve training for health care providers on oncofertility to enhance their awareness and knowledge, and devise and incorporate communication strategies to effectively discuss fertility preservation with patients and their families. In addition, there is a need to establishing protocols and referral systems for oncofertility care to fertility centers within reach, which can help streamline services even when expertise is limited. These findings also indicate a need for policymaker buy-in to consider oncofertility as an integral part of cancer care and allocate resources accordingly. The developed health policy should advocate for and support the establishment of specialized oncofertility units or partnerships with centers that have the necessary expertise. Consideration should also be given to revise insurance policies to include coverage for fertility preservation procedures for patients with pediatric cancer at centers where these services are offered.

Further research

There is a need for more context-specific research to understand the unique barriers to oncofertility care in low-resource settings. Considering the cost barrier, research into low-cost, effective fertility preservation techniques suitable for these settings is critical. Lastly, studies assessing the long-term psychosocial and quality-of-life outcomes for pediatric cancer survivors who did not have access to fertility preservation services can provide evidence to support health policy changes.

Conclusion

Health care providers at the UCI face contextual barriers to addressing future fertility among pediatric patients such as lack of awareness and knowledge, lack of oncofertility expertise and options, challenges with communication, staffing inadequacy, and funding constraints. Factors such as patient engagement, a recognition of the value of future fertility, and health care providers’ eagerness to expand their skill sets can be leveraged to facilitate oncofertility care. The identification of these barriers and facilitators is a critical first step. To overcome them, a multidisciplinary approach that involves health care professionals, policymakers, patient advocates, and researchers is required. Collaboration with international oncofertility consortia could also provide support through shared resources and expertise.

Authors’ Contributions

A.K.: Conceptualization, methodology, validation, funding acquisition, project administration, investigation, formal analysis, data curation, data visualization, and writing the original article draft. S.M.: Formal analysis, data curation, data visualization, and writing the original article draft. J.N.J: formal analysis, data curation, data visualization, and writing the original article draft. D.Z.: Methodology, validation, project administration, supervision, and article review. S.X.: Methodology, validation, project administration, formal analysis, data curation, and article review. V.G.-L.: Supervision, data curation, resources, and article review and editing. J.K.B.: Methodology, validation, project administration, supervision, and article review. H.W.: Methodology, validation, funding acquisition, project administration, supervision, and article review. R.G.: Methodology, validation, funding acquisition, project administration, supervision, and article review.

Data Sharing Statement

All individual participant data, protocol, analysis plan, and code book are available to anyone who wishes to use the data to achieve the aims stated in the study protocol. The data are available upon request to the corresponding author for a duration of 5 years from publication.

Author Disclosure Statement

The authors declare that they have no competing interests.

Funding Information

This study was funded by the NPGH research fellow training consortium, under the Fogarty International Center and the National Institutes of Health (Grant No. D43 TW009345) and supported by the National Institutes of Health’s National Center for Advancing Translational Sciences (Grant No. UL1 TR002494). The funding organizations did not have any role in the design of the study or writing of the article. V.G.-L. receives funding from the National Institutes for Child Health and Development (NICHD) under grant number Z1A HD008985.