Infertility is a global public health issue with severe consequences, such as having a negative impact on Quality of Life (QoL) (1–5). QoL is defined by the World Health Organization (WHO) as “an individual’s perceptions of their position in life in the context of the culture and value systems in which they live, and in relation to their goals, expectations, standards and concerns” (6). According to the WHO, the lifetime incidence of infertility in High Income (HIC) and Low-and Middle-Income Countries (LMICs) is 17.8 and 16.5%, respectively, (7). Despite no significant differences in infertility occurrence between these countries, it is known to pose especially negative outcomes in LMIC populations (8–12). This may be related to the lower prevalence and utilization of infertility services in LMICs due to a shortage of public financing and cultural stigmas associated with publicly disclosing fertility-related issues (13, 14).

Impact on QoL has been used to evaluate personal perception of adjustment to health-related issues and life events (6), as such, the Fertility Quality of Life Tool (FertiQoL) was developed to provide a more standardized way to measure the impact of infertility and involuntary childlessness on QoL (2). Despite being translated into 48 languages and globally validated (15), only a limited number of studies have explored the cultural relevance of FertiQoL items in psychometric testing (16, 17). The current landscape demands a paradigm shift in global health research, necessitating the integration of science diplomacy principles and a heightened focus on cultural sensitivity. Science diplomacy involves the convergence of science, technology, and political interactions to address pressing social, environmental, and economic issues within and between countries, including global public health challenges such as infertility (18, 19). Recent research underscores the importance of context-adapted policies based on decolonized research to effectively tackle global health issues (20). This study seeks to contribute to this shift by examining methodological and cultural considerations in the implementation of the FertiQoL tool in Sudan, thereby aligning with the principles of science diplomacy and challenging neo colonial structures.

Infertility in Sudan presents a significant societal challenge, evident in the increased interest of the Federal Ministry of Health and the rising number of private treatment clinics (21). However, treatments for infertility require individuals to navigate the complex interplay between financial limitations and cultural pressures. The financial burden of infertility treatment prevents healthcare professionals from supporting a majority of infertile individuals. This is because infertility healthcare centers are not equally distributed in developing countries, with more low-income regions depending primarily on limited resources from non-profit organizations who often do not prioritize fertility treatment (22). Thus, the limited access and high cost of treatment is a barrier for many patients. Additionally, rigid gender norms attribute the responsibility for infertility primarily to women. This subjects women to blame and exposes them to societal stigma, often leaving them to seek medical help alone (23, 24). This limited support for infertile women is reflected in studies reporting instances of domestic violence, divorce, and social isolation in LMICs (25). These problems highlight the urgency of addressing infertility in Sudan and other LMICs, with tools like FertiQoL offering insights into understanding this burden.

The current study is part of a larger project examining the feasibility and acceptability of using fertility tools in LMICs, and preliminary results of that project (26–28) indicated that there might be some methodological and cultural considerations that need to be examined further to facilitate implementation of the FertiQoL in Sudan and other LMICs (28). This is a necessary step for research as it positions the Global South at the center to ensure its validity globally. Furthermore, the findings could potentially encourage government funding into medical aid and awareness concerning reproductive health.

One methodological issue that became apparent during the project, was that the mode of administering the FertiQoL might impact how the questions are interpreted and answered. To address this concern, we added an additional dimension to the study to investigate how the mode of administering could impact FertiQoL scores, which, to our knowledge, has not been examined. There is disagreement in the literature about which administration mode of self-assessment enhances accuracy (29–32). Moreover, Likert scales, as used by the FertiQoL, are especially susceptible to these types of response biases, as reported by a study on a Spanish population (33). A global study by Harzing et al. (34) points out that Likert scales lack nuance when it comes to cross-national research due to language biases. For self-assessment of QoL specifically, evidence is mixed, with some studies suggesting that there might not be a difference between face-to-face interviews and surveys (31), while others report that predicting QoL was improved using questionnaire-based than interview-based assessment (30). A recent systematic review on the global use of QoL measures/tools, reported that interviewing is the most commonly used method to assess QoL since it increases response rates and reduces errors due to misunderstanding or confusion about questions (32).

It is well documented that social desirability bias (the desire to present one’s best self) appears more during interviews and other face-to-face interactions than while completing self-administered questionnaires (29, 35). Additionally, acquiescence bias (the propensity toward more ‘yes saying’ and agreeing with others to appear ‘easy going’) is also exaggerated in face-to-face interactions (29, 36). These biases are especially pertinent to sensitive topics or ones that are perceived as violating social norms (36, 37). Characteristics of the interviewer, such as race or gender can also influence the response bias (e.g., social desirability, acquiescence bias) and enhance or degrade the accuracy of the data collected (36). On the other hand, interviewers can pick up on subtle cues, like hesitance that can be indicative of response bias and could potentially mitigate these biases or at least make note of them. It has also been reported that interviews can enhance recall as the interviewer can redirect the interviewee (29).

To examine the impact of the mode of administration we compared provider-administered and participant-completed FertiQoL. We also compared interviews with provider-administered mode (where the provider can clarify items but there is no redirection or prior discussion of anything that could trigger memories) to determine if talking about the issue before completing the FertiQoL (in the interviews) would have an impact. We anticipated that the FertiQoL scores would differ based on mode of administration.

It is also well recognized that the implementation of English language tools can be enhanced by ensuring that translation is augmented with an examination of cultural appropriateness (38, 39). This is exemplified by studies that show that culturally appropriate interventions have better outcomes (40). As the initial development of FertiQoL only sampled participants from countries in the Global North (Australia, Canada, New Zealand, United Kingdom, and the United States), it has proven difficult to directly apply some items of the tool to individuals in LMIC and Global South countries due to differences in culture that mediate the effect of infertility on quality of life in these areas (2, 41). Specifically, there are very few studies assessing the validity of FertiQoL in the African continent, making it difficult to determine exactly which items may be irrelevant or subject to improvement (28). Thus, to understand the importance of cultural appropriateness examination of cultural factors that could potentially impact the implementation of FertiQoL in Sudan is essential.

Some key cultural considerations in this region are the prominent ideology positioning child rearing as a necessity, and the taboo surrounding discussions of infertility (42). This may add pressure for individuals living in this region, making it difficult for them to answer all questions on the tool truthfully. It is therefore necessary to adopt a qualitative approach spearheaded by researchers in the region who have a clear understanding of local culture and societal norms. This could provide a richer insight into the lived experiences of those dealing with infertility as aimed by this study. This is especially important as many studies in the African continent have been conducted by foreign researchers that have not collaborated with local professionals nor taken cultural context into consideration when reporting results, thus perpetuating the cycle of neocolonialism in research (43).

Considering this, the main aim of this mixed methods study was to investigate methodological and cultural factors that could potentially impact the effective implementation of FertiQoL in Sudan and other LMICs, informed by the patients’ perspectives. This approach aligns with the principles of science diplomacy, emphasizing collaboration and inclusivity in research. To achieve this aim, we set out two objectives. The first objective was to determine if FertiQoL scores would differ significantly based on mode of administration (quantitative data). The second objective was to examine whether there were cultural issues that surfaced in the interviews (qualitative data) that could explicate the FertiQoL scores (quantitative data) and vice versa. We used a mixed methods approach because it can help reveal patterns by comparing cases and personal stories from the individuals’ perspectives (44), thereby offering a better understanding of the challenges and opportunities associated with FertiQoL implementation in diverse cultural contexts.

In line with previous research, the results indicated cultural factors that could potentially impact the implementation of FertiQoL (42, 50), however, methodologically, the different modes of administration of the tool appeared to be comparable in this context. The results overall suggested that participants perceived the FertiQoL to be comprehensive and understandable and had utility beyond assessment of fertility related QoL such as helping patients reflect on how infertility had affected their lives, which might be especially relevant for cultures where such discussions are difficult (50). It became evident that the interpretation of certain items or domains could benefit from a culturally sensitive perspective to align more closely with patients’ lived experiences. Addressing these cultural considerations could enhance the implementation of FertiQoL, aligning with Khupe and Keane’s assertion that research should be culturally driven and based on their culture, language, and ideology to be advantageous to people (51). This can only be accomplished through the removal of Eurocentric perspectives from research to make it relevant to the Global South.

Specifically, interpretation of quantitative results indicated that FertiQoL mean scores overall and in each domain were not affected by mode of administration of the FertiQoL, consistent with published reviews and studies regarding mode of administration of surveys and questionnaires (35, 52, 53). This could be because the participants were equally forthcoming (or not) while addressing the items in all three modalities. It appears that social desirability, which is related to worry about creating bad impressions, is equally applicable to the different modalities of survey (interview, self-administered focus group etc.), since they all rely on self-report (35, 52–54). However, one caveat is that these subsamples appeared to be demographically and medically similar therefore the same might not be true for groups that are very different from each other.

The themes that emerged indicated that for the most part the FertiQoL confirmed the lived experience as expressed in the interviews except for a few minor discrepancies due in large part to cultural nuances. These discrepancies would typically be disregarded in neocolonial research, but the current study’s decolonised approach puts these details in the foreground. It also appeared that the FertiQoL is a comprehensive tool from the patient’s perspective, except for the lack of impact of financial burden of infertility, which might be especially significant in places like Sudan where the cost of treatment is not covered by the government (24). This is an important consideration as women with lower incomes rely more on reproductive health interventions from the government than women with higher income (55). Potential utility and extended use of the tool emerged from the analysis as FertiQoL appeared to help participants see that there is an impact and which areas were affected, confirming that it can be used by providers to help patients identify problem areas and self-reflect. The participant’s emphasis on the financial burden of treatment can contribute to the science diplomacy discourse by shedding light on this issue for infertile individuals. A systematic review by Njagi et al. (14) was the first to compare medical costs for Assisted Reproductive Technology (ART) across LMICs and found them to be up to 200% of the GDP per capita in Africa and South-East Asia. Whereas the lower costs of ART in Eastern Mediterranean regions and Americas was correlated with regulatory policies of ART and more government funding mechanisms. The present findings may encourage further investigation of these financial issues specifically in Sudan and similar Global South countries and promote the development of appropriate ART regulations and public funding mechanisms for infertility treatment. This can ensure wider access by acknowledging and integrating infertility treatment in universal healthcare funding coverage. Outcomes from science diplomacy research have already come into fruition as evidenced by Gerrits et al. (13) who set up a project funded by the Dutch Ministry of Foreign Affairs to increase infertility awareness in Kenya and Ghana. Organizations such as this could foster improved diplomatic relations amongst Global South and Global North regions and motivate increased financial support for underfunded public health issues.

Furthermore, thematic analysis helped identify specific items that required clarification. This also highlights the aforementioned importance of verifying research tools’ effectiveness in the Global South by taking into account the existing cultural and linguistic differences. For the item that asks about ‘coping’ with the fertility problem, it appeared that the translation of the term ‘coping’ might be the source of confusion. In the Arabic FertiQoL the word used for coping is ‘muagahat (مواجهة)’, which can mean to ‘cope with’ but translates more closely to ‘face’ or ‘confront’ (56). In the item that asks about whether the person fluctuates between hope and despair, it appeared that the use of the Likert scale for this item might have been confusing because there seem to be two dimensions (the hope-despair dimension and the agree-disagree dimension), making it difficult to know how to complete this item. For the other four items that required clarification, it seemed more likely that the cultural or social context for the items might differ depending on where the FertiQoL is used. For example, the item about social isolation, might be difficult to interpret within the Sudanese context, where social engagements are obligatory and not attending them would be frowned upon, therefore the option to socially isolate is not available nor would someone be socially isolated by the society. It could also be the case that the ability to disclose about the topic might make one appear inferior, e.g., the item about jealousy might not be answered honestly as jealousy is perceived as a very negative attribute in Arab cultures because it is associated with the concept of the ‘evil eye’ which is perceived as very harmful (57) and sometimes the cause of infertility (58).

The presence of such factors highlights the importance of researchers who are well acquainted with the cultural context in which the study is being conducted. For instance, it is generally well known that most countries in the Global North tend to have individualistic and autonomic structures, whereas most countries in the Global South have more collectivist tendencies (59). This makes it clear that results from the Global North, where most research is typically conducted, cannot be generalized to the rest of the world population (60). In line with this, this study underscores specifically how these social nuances affecting participants’ interaction with the FQoL questionnaire can be different from participants from Global North countries. Results from such studies may help further science diplomacy within the Global South through South–South cooperation, where developing countries share resources and expertise in the process of meeting development goals via joint efforts (61). Past policy recommendations from the Task Team for South–South Cooperation (TT-SSC) include the improvement of information quality to align more closely with national systems, as well as the implementation of evidence-based knowledge sharing between countries to better address their needs. This has been crucial in the management of Global South health issues such as the Ebola virus outbreak in the past (61, 62). The specific focus of the study on the social, cultural and financial domains of infertility in Sudan and by extension, other similar countries in the Global South, may foster a more holistic understanding of the challenges as well as methods of implementing infertility services throughout the region (13, 61). Additionally, the observations from this study could only be made due to the employment of mixed methods. An exclusively quantitative study would not have given participants the opportunity to elaborate on their doubts regarding the questionnaire and general thoughts on their perceived quality of life.

We anticipated that the importance of having offspring to fulfill the goal of forming a family would lead to a significant impact on the social aspect of the individual’s life. However, triangulation of the data revealed that while social pressure was reported by many participants as the main negative consequence of infertility, the overall social domain score was the highest domain score for the sample. An examination of this discrepancy indicated that it could be because items in the social domain in the FertiQoL are focused on social support and engagement more than social pressure and since all items are given equal weight in the score this might have dwarfed the impact of social pressure. Furthermore, social support and engagement might not be affected by social pressure in Sudan as they are woven into the cultural fabric of Sudan and other collectivist societies (63–65). As the use of the FertiQoL continues to grow in collectivist countries like Turkey, Iran, India, South Africa, China, Korea, and Japan (66–73), interpreting the social domain scores within the cultural context becomes more important and clinicians and researchers should be aware of this issue. Ways to better understand the social domain within a cross-cultural context should be examined in future research using methodology targeted at improving questionnaire design, such as cognitive interviewing, which has proven to be effective across cultures (74).

Despite the methodological and cultural considerations, results in general indicated that FertiQoL is a useful disease-specific QoL measure that can help express the effect of disease on QoL (part of burden of disease) from the patient’s perspective (5). This is important because understanding and estimating the burden of disease can precipitate action to reduce it (75). Thus, as previously mentioned, this tool may be essential when justifying the need for financial investments by stakeholders into research examining prevention and treatment of infertility. A global study by Zhang et al. (76) noted that in instances where medical insurance for infertility is offered, patients are more likely to seek treatment which may eventually improve their quality of life. While providing these treatments and making policies to avoid infertility may be costly, research estimated that these investments may pay off (14, 77). For instance, it has been estimated that public investments into technologies for in-vitro fertilization (IVF) can result in future economic benefits for the South African government due to the potential increase in tax-payer citizens, maintenance of a healthy and sustainable workforce, and reducing long-term healthcare costs, among other reasons (77). This is significant for the economy for LMICs like Sudan where financial costs of IVF treatments are unaffordable for many patients who may need it (14).

The main finding of the study is that FertiQoL, a tool designed to assess fertility-related quality of life, is perceived as comprehensive and understandable by participants. The results indicate that the tool has utility beyond assessing fertility-related quality of life, as it helps patients reflect on how infertility has affected their lives. The study emphasizes the importance of considering cultural factors in the implementation and interpretation of FertiQoL. Specific cultural nuances, such as the impact of financial burden on infertility, were highlighted, underlining the need for a culturally sensitive perspective in utilizing the tool. The study also reveals discrepancies in the interpretation of certain items due to cultural and social contexts. Despite these considerations, FertiQoL emerges as a valuable disease-specific quality of life measure that can aid in expressing the impact of infertility on patients’ lives and as a flexible model that can be adapted to diverse cultural contexts. The findings suggest that the tool has potential utility for healthcare providers in helping patients identify problem areas and engage in self-reflection. The study contributes to the understanding of how cultural factors can influence the application and effectiveness of health-related research tools, particularly in the context of infertility in the Global South.

In conclusion, our study on the implementation of FertiQoL has revealed promising insights that align with the goals of science diplomacy. As evidenced by the cultural factors influencing the tool’s implementation, our findings underscore the significance of embracing cultural sensitivity in shaping public health policies and interventions. A key takeaway from our research is the importance of recognizing and addressing neocolonial structures in public health research. Our approach highlights the need to remove Eurocentric perspectives, making research more relevant to the Global South. As we move forward, it is imperative to consider the impact of local culture and language on the interpretation of research tools, reinforcing the idea that successful science diplomacy should be driven by the culture, language, and ideologies of the communities it aims to serve. As we extend our gaze beyond the horizons of South America and Asia, our findings emphasize the need for more research initiatives in regions such as the Middle East and Africa. By doing so, we can further incorporate decolonial thinking and heritage diplomacy into the discourse surrounding science diplomacy. Our study, situated within a multicultural and multidisciplinary framework, supports the call for evidence that transcends geographical boundaries, acknowledging researchers as protagonists irrespective of state hierarchies. Looking ahead, we propose that the lessons learned from the implementation of FertiQoL serve as a foundation for further research endeavors in underrepresented regions.