Yes, we can end TB but what is the progress in the battle against tuberculosis?

This year’s World Tuberculosis (TB) Day focused on the theme “Yes! We can end TB,” which was also last year’s theme. It is important to consider what we know – or should know – about TB, including our progress so far, where we stand today, and what we need to do to end TB by 2035.

TB is caused by a germ (a microscopic bug) called Mycobacterium tuberculosis (Mtb), discovered by Robert Koch on March 24, 1882 (thus World TB Day). Since then, we have made significant progress in the fight against TB. We know that TB can be prevented, and for many years we have had medicines that work against TB. These include medicines that can prevent TB:   nearly a century ago, scientists developed the BCG vaccine, which is still in use today despite its limitation to prevent severe forms of TB. Our efforts to end TB have saved 75 million lives worldwide since 2000.

Despite the commendable progress, the TB epidemic persists, with many families and communities, particularly in developing countries, still suffering from this infectious disease. In recent years, there have been nearly 11 million new cases and 1.6 million deaths from TB each year. The COVID-19 pandemic, which broke out in 2019, exacerbated this problem. Although we were making progress with the End TB strategy, the pandemic caused us to lose some of that progress. According to the WHO Global Tuberculosis Report 2023, there were 10.6 million new cases of TB and 1.3 million deaths worldwide in 2022. Nearly 3 million people with TB do not receive the care they need, and many cases of TB remain undiagnosed or unreported. In a recent prevalence survey, it was observed that around half of all people with TB  in Kenya are missed and go unreported. Kenya remains one of the 22 countries most affected by TB, having reported 128,000 incident cases of TB in 2022, 23% (29000) being people living with HIV, 31% (8900) of whom died. Additionally, cases of TB that are resistant to medicines are on the rise in many regions. 

TB is a contagious disease that spreads through the air when infected individuals cough or sneeze. Not everyone who contracts TB will spread it, and not everyone exposed to TB will get sick. However, some people, known as superspreaders, are more likely to infect others. To control TB, targeted efforts should focus on identifying and treating highly infectious individuals. A research team has developed a clinical prediction tool to identify such individuals by analyzing their clinical and inflammatory profiles. These findings are crucial for policy and practice in TB control efforts, as superspreaders significantly contribute to ongoing TB transmission. Clinicians can use different profiles to identify highly infectious individuals and provide them with early treatment and targeted TB preventive therapy. This approach can also be used to identify close contacts who may need preventive therapy.

Most people who are exposed to TB will have latent TB, which means they have TB germs in their bodies but do not feel sick. However, these individuals have a 10% chance of getting sick with TB at some point in their lives. In high-burden settings, such as Kenya, where TB is prevalent, up to 25% of the population may have latent TB. Our team’s recent study in Kenya revealed that almost 50% of people living with HIV also have latent TB. People with weak immune systems, such as those with HIV, malnutrition, or diabetes, or those who smoke, are at higher risk of developing active TB. Household contacts exposed to highly infectious individuals have an even higher prevalence of latent TB infection (85%).  We suggest that instead of classifying all TB-exposed individuals into one category for TB preventive therapy (TPT), we need to explore the clinical and cost implications for targeted TB preventive therapy based on the level of exposure and clinical risk factors.

According to a recent prevalence survey conducted in Kenya, when individuals are exposed to tuberculosis (TB), some will progress to active TB which is symptomatic and can be mistaken for other respiratory illnesses. On the other hand, some people may experience very mild symptoms that are often missed even during hospital visits.

Diagnosing TB can be challenging, especially among people with mild or no symptoms, people living with HIV, and children. Therefore, there is a need for improved diagnostic tools for TB. Our research team has demonstrated that cough features can be used to diagnose TB and is investigating other methods to diagnose TB early, including combined methods for diagnosing and monitoring TB and HIV in adults and children.

To ensure effective treatment and control drug resistance, we need to carry out implementation research to find innovative ways to deliver timely medicines for curative and preventive purposes. Personalized medicine has a role in TB care, and context-specific data can support the implementation of evidence-based strategies tailored to the needs of each community. For example, our team has demonstrated that volunteers in Nairobi, Kenya, who have a predominance of the rapidly metabolizing enzyme type may be at higher risk of developing drug resistance during TB treatment, underscoring the need for a context and population-specific approach.

The fight against TB is facing significant challenges, such as a lack of funding to combat TB and a lack of prioritization, especially with the ongoing HIV epidemic and the aftermath of the COVID-19 pandemic. To end the TB epidemic by the year 2035, governments, organizations, communities, and patients need to work together. Communities and patients should be involved in decisions about their health to improve TB detection and treatment. Collaboration globally and across different sectors is crucial to control TB better by sharing knowledge, skills, and resources. We need to focus on strategies aimed at preventing TB and providing good care for those who have it in an integrated approach to manage costs. Environmental control measures such as using special filters in buildings can also effectively prevent TB and control the spread of other airborne infectious germs such as COVID-19 and other respiratory diseases. Additionally, we need to support the discovery and development of vaccines that can effectively prevent TB infections and progression to disease, as the existing BCG vaccine has limitations. While ending TB by 2035 is ambitious, it is possible, but it depends on universal commitment, innovation, and substantial allocation of resources to prioritize comprehensive control measures against TB.

 

Lilian Njagi (cohort 9, University of Nairobi) is a Clinical Research Scientist at the Center for Respiratory Disease Research, Kenya Medical Research Institute, a guest lecturer at the University of Nairobi, and a fellow and teaching assistant in the TB/HIV training program (TBHTP) of the University of Nairobi, University of Washington and Kenya Medical Research Institute. 

In science, like in many fields, gender disparity persists but my journey as an African female scientist stands as a powerful testament to the transformative potential of resilience, determination, and robust support systems. Overcoming societal expectations and breaking through gender, racial, and systemic barriers, my journey in Science, Technology, Engineering, and Mathematics (STEM) has been marked by perseverance and the realization that science knows no boundaries.

As a young African female, traditional gender roles were deeply ingrained from childhood and my passion for pursuing a career in science was met with skepticism, unconscious biases, resistance, and challenges. Yet, I pressed on, fuelled by a desire to challenge stereotypes and redefine possibilities. Unfortunately, these challenges are not unique to me but common for females in STEM fields.

Discrimination, limited opportunities, and societal expectations often stand as formidable obstacles, threatening to derail women and girls from realizing their dreams. Moreover, pervasive stereotypes about fields like medical entomology, nanotechnology, and biomedical innovation being predominantly more suited to men initially demotivated me to pursue a career in these fields. Furthermore, the absence of women in leadership positions within these disciplines added to my initial discouragement.

Additionally, I found that maintaining a work-life balance was quite challenging for me due to the societal pressure and expectations of women’s gender roles. It can be daunting to balance the demands of a career in research or academia with family responsibilities. Women are often under pressure to choose between advancing their careers and prioritizing their personal lives. It took me some time to figure out how to partition and negotiate protected time to pursue my goals while also fulfilling my family’s duties and expectations.

However, I was not deterred by societal barriers and I pursued my passion for science, specifically the field of Public Health, with a desire to redefine possibilities and challenge stereotypes. I sought out opportunities and avenues that would eventually lead me to the support I needed. A pivotal turning point in my academic journey was when I received the CARTA PhD fellowship in 2020 to pursue a PhD in Environmental Health at the University of Ibadan, Nigeria. CARTA seeks to build a critical mass of African scientists and researchers to empower African institutions. Among the many strengths of the program is the commitment to fostering diversity and empowering an equitable environment for African Early Career Researchers (ECRs). The program is guided by a strong gender policy and this has been a catalyst for many fellows, especially women researchers, providing crucial support, mentorship, and networking opportunities.

CARTA’s selection process actively champions diversity and inclusion in the scientific community. Through their initiatives, they not only support individual scientists but also encourage women to thrive in their chosen careers while advocating for systemic changes. This inclusive approach has fostered an environment where stereotypes are dismantled, and talents can flourish regardless of gender, paving the way for future generations of women scientists like me.

The CARTA PhD fellowship award goes beyond financial support; it has helped me significantly in my research by providing holistic support, mentorship, and networking opportunities in my field and beyond. Through these connections, I was able to overcome obstacles, gain access to resources, attend international conferences, and collaborate with leading scientists from around the world. This collaboration resulted in several research outputs, including patents and publications in my research area. I appreciate initiatives like CARTA, which challenge the status quo and promote inclusivity in the scientific community, as they have helped me in achieving my professional goals.

I have been fortunate to have a supportive network of mentors, colleagues, and peers who have provided me with guidance and encouragement. This has been a great motivation for me to succeed. Additionally, developing a strong sense of self-confidence and assertiveness has helped me navigate the challenges often faced by women in scientific fields, such as the glass ceiling and stereotypes. Today, on International Women and Girls in Science Day, I am reflecting on my journey from being an inquisitive and ambitious junior school girl who loved mathematics, biology, and science, to becoming an early-career female researcher and scientist, defying all odds against me. I realize that there are others like me out there still aspiring to become with the potential to excel if given the right opportunity and space to thrive.

Despite the challenges that women and girls face in the STEM field, it is important to recognize that they possess the resilience, determination, and talent to overcome these obstacles. Mentorship programs that are tailored to support women and girls in the sciences can help them navigate these challenges. Moreover, collective actions that encourage women and girls to pursue their passions and ambitions, support one another, advocate for change, and seek out opportunities for leadership and visibility can enable them to thrive and make significant contributions to the world through STEM.

As I continue to make strides in my field, break barriers, and contribute to the scientific landscape, I take responsibility to inspire and uplift others, especially girls in STEM. Through mentorship, role modeling, and targeted projects, I aim to guide, sustain, and maximize the potential of African girls to excel in STEM career paths. I firmly believe that promoting gender diversity in science is not only advantageous but also crucial, serving as an investment in our shared future for the progress of knowledge and the enhancement of society. On a larger scale, I envision not a future but a present where we act to create a holistic and enabling environment for girls and women of all ages and family responsibilities to thrive in science by putting in place actionable policies.

 

About the Author

Ohia Chinenyenwa is a CARTA Cohort 10 Fellow with affiliations to the University of Ibadan, Nigeria and Indian Institute of Technology, Bombay, India.

Links to Scientific Profiles

Dr. Nkosiyazi Dube

Recently appointed as the Head of the Department (HoD) of Social Work in the School of Human and Community Development, University of Witwatersrand (Wits), Nkosiyazi Dube, a cohort 4 graduate reflects on the impactful role that CARTA’s innovative fellowship has played in his journey. In this Q&A feature, he outlines his strategic plans to leverage his new position to enhance research capability in learning institutions and shares his immediate priorities as he takes on the new responsibilities. 

1. Congratulations on your recent appointment! What were your initial thoughts and emotions upon receiving the appointment considering your previous roles and experiences? 

As the newly appointed Head of the Social Work Department at Wits, I am deeply grateful for the support and guidance I have received from my colleagues and mentors. Before this role, I served as Deputy HoD from January 2021 to December 2022 and coordinated the Master’s program in Social Development from January 2020 to December 2023. While I felt honored and supported, I also harbored a sense of responsibility to maintain the high standards of our department. Recognizing the esteemed academics who came before me, I was both humbled and motivated to rise to the challenge. The training and mentorship from CARTA continue to be invaluable as I step into this new role.

2. CARTA has been spearheading numerous training sessions in partner institutions across Africa. Which training did you undertake at CARTA? How do you believe your experience and leadership training as a CARTA fellow have contributed to your success in securing this position?

My journey with CARTA has also been instrumental. What I admire about CARTA is that as much as its philosophy, pedagogy, and methodology are founded and grounded in theory, it allows its fellows to put theory into practice. While I gained great skills and knowledge from the program’s four distinct Joint Advanced Seminars (JASes 1-4), I particularly benefited from JAS 4 in terms of leadership, collaboration, and partnership. The JAS 4 sessions enlightened me on how to work together with people from different disciplines with different perspectives about knowledge and how it is developed. I was also introduced to the different leadership styles and approaches, their affordances and cons. I was able to reflect on this information and how I could use it for the benefit of my Social Work Department at Wits. 

During JAS 4, I had an opportunity to work with CARTA fellows from other universities and research institutes to respond to a mock call, and my group took first place and won the prize in 2018 for the best research proposal submitted. I then looked back and reflected on what could have been the secret behind the win and I realized that in my group, we valued the diversity of individuals, disciplines, and origins and capitalized on these. This was one experience that I valued when it came to leadership. I was allowed to showcase my abilities and technical know-how in leading a group of different individuals working towards a common goal. 

Benefitting from this experience, in 2020, I  collaborated and led a team of investigators in my department and applied for the CARTA re-entry grant, which we got. Even though this project was severely affected by the COVID-19 pandemic, we managed to generate the data and we are focusing on manuscript writing now. I was among several CARTA fellows who were part of a Trainer of Trainers (ToT) Policy Communication workshop rolled out in 2021 in partnership with the Population Reference Bureau (PRB). After the ToT, I led a section and trained the next cohort of CARTA fellows. In February 2023, I actively participated with other CARTA fellows and focal persons in facilitating the Postgraduate Orientation Week at Wits, during which the CARTA methodology was piloted.

These are among some of the milestones realized through the CARTA program that have built my capabilities and confidence gradually. CARTA has been able to identify, develop, and nurture the talent that they saw in me, which I never realized I had. The training, mentorship, and support from CARTA bolstered my confidence within the leadership space in my new role and I believe the program’s influence will continue to be invaluable in this and other horizons.

3. In what ways do you envision leveraging your background in social work as well as CARTA training to shape the direction and goals of the Department at the School of Human and Community Development?

In recent years, I have noted a remarkable demand for social work skills in South Africa, the region, and abroad. This for me calls for an integrated approach in the training of our graduates so that they can take up positions within any market across the globe. CARTA, in this case, comes in handy through its curriculum development training, together with its emphasis on collaborations and partnerships through research, teaching, and service. 

In my new position, I plan to pursue and encourage collaborative teaching involving institutions in the global north and south. I plan to foster partnerships; and student and staff exchange programmes which could in turn lead to the exchange of knowledge and teaching methods that could see our graduates becoming internationally sought after, whilst at the same time still relevant to our local context.

Additionally, I intend to champion writing proposals for edited books to boost the research capacity and outputs of the departments as well as curriculum development and the development of knowledge that considers and values Afrocentric literature in our teaching. 

Currently, our teaching is informed mostly by Eurocentric ideas, some of which do not make sense within our context, for example, the meaning of ‘family’ in the UK is different from what ‘family’ means in the African context. These are some of the innovative ideas that I would like to foster during my term of office.

4. How do you see the role of social work evolving in the current societal landscape, and what implications does this have for the curriculum and research priorities within your department?

Social work is fast evolving and growing within our context and it is now entering spaces where we did not envisage. COVID-19 exposed the major gaps that we have in the profession, and I believe that there is a need for swift action to mitigate this. The evolving nature of social work has prompted our department to engage in critical reflection on our curriculum and research priorities to ensure they align with the contemporary social issues we currently face.

We are on course in this effort and push for the department to continue to investigate digital social work and issues around social work and the 4th Industrial Revolution so that these are embedded in our curriculum as an initiative for curbing or responding effectively to future pandemics. Additionally, I will encourage further investigations into the issues concerning Green Social Work due to climate change issues that are directly and indirectly impacting the quality of life for many people. 

5. As the Head of the Department, what initiatives do you plan to undertake to enhance the visibility and impact of social work programs at Wits?

Social work is one of the programs that receive a good amount of applications for 1st-year entry. This is a good foundation and my efforts will go on to intensify the visibility of the programs at the university using several strategies. Firstly, I will leverage Wits’ social media platforms and teams to promote the programs, call potential candidates to apply, and engage interested students. This will include rigorously marketing our MA programmes, especially the school’s Social Work Programme, which is an area of specialization that is currently offered only by Wits University within the South African context.   Secondly, I plan to have seminal papers that can be distributed to the university community after our major events, such as the World Social Work Day, the Oath-Taking Ceremony, and the Prof Kaseke Memorial Lecture. Lastly, community engagement is also an initiative that I plan to encourage during my tenure so that even those colleagues who are already in practice are made fully aware of the programmes and encouraged to apply to further their skills and knowledge. This will enhance the profession as we might end up with quite a sizable number of Social Work Practitioner-Researchers, instead of just practitioners. I know that this kind of initiative will not only boost human resources but also financial resources, therefore, I plan to encourage staff members to apply for NRF grants and other international grants that support such initiatives.  

6. Gender equity, diversity, and inclusion are important in academia and contribute to the richness of the environment for teaching, learning, and even research. How do you plan to create an inclusive environment for students and faculty within the department?

The department prides itself on being one of the diverse departments at Wits, through its staff and students. There is a good representation of different ethnic and racial groups in both our staff and students. The area that I will be working on is to encourage male students in the profession, and one of the strategies that we have implemented this year is to try and headhunt. I do not believe in favoritism, but I subscribe to the notion of equal treatment and opportunities for all, and I wish to stick to this to create an inclusive environment for all staff and students in the department. Fair treatment and respect help to build collegiality and foster collaboration as opposed to competition and sub-groups in the department.  

7. Lastly, what advice would you offer to aspiring academics and leaders in the field of social work, drawing from your own experiences and the insights gained from the CARTA program?

I would like to say that sometimes it helps to remain in your lane and to be dedicated and committed to what one does because by striving for the best, one is bound to remain motivated and willing to soldier on even when the going gets tough. Again, I say that everyone has in him/her to be the best, therefore, let them not look afar but within themselves.

CARTA call to end sexual harassment

Sexual harassment (SH) is a complex issue, particularly in academic settings, where it includes requests for sexual favors and verbal or physical sexual activities that are used to manipulate academic or professional outcomes. The culture of silence surrounding SH, unequal power dynamics, fear of retaliation, and stigma, contribute to the underreporting of SH, making it a pervasive problem in institutions of higher education.

Breaking barriers and pioneering change, Boladale Mapayi, a CARTA graduate of cohort 4 from Obafemi Awolowo University (OAU) is a pivotal force in the fight against SH within Nigerian educational institutions. Through a re-entry grant awarded in 2022 as part of the CARTA postdoctoral program, Boladale is leading the implementation of a study project that aims to uncover the deep-seated issues of SR within higher education institutions in Nigeria. Dubbed SHINE Project (Sexual Harassment In Nigerian Educational Institutions), the grant commenced in July 2022, running up to October 2023. 

The SHINE project has sought to explore the complex perceptions driving both heterosexual and same-sex SH among students and staff, understand the social and mental health consequences faced by survivors, and assess the institutional mechanisms for preventing and responding to SH. Under Boladale’s steadfast leadership, the project is more than just an investigation; it is a call to action. 

The onset of the project was marked with stakeholders’ meetings (November 2022) to foster community engagement and include the helpful ideas of the campus community in the research process. Targeting staff and students of selected universities – OAU, the University of Ibadan, and the University of Lagos- the study employed a mixed methods design. This has comprised policy review, surveys, focused group discussions, in-depth interviews, and key informant interviews. 

Research conducted finds comprehensive but potentially flawed SH policies in the selected universities. Survivors reported various forms of harassment in locations like offices, lecture theaters, and libraries. Reasons for not reporting included stigma, lack of evidence, and fear of retaliation. Both same-sex and heterosexual harassment were prevalent, with male perpetrators. Participants often attributed harassment to indecent dressing. Many campus community members were unaware of their institution’s harassment policies and support resources. Generally, there is a need for increased SH awareness and training in higher education institutions. 

In August 2023, SHINE conducted three dissemination meetings, bringing together stakeholders, including student representatives, lecturers, researchers, and anti-sexual harassment committee members. These meetings allowed for open discussions about the study’s findings, addressing concerns surrounding dress codes, and encouraging further collaboration on institutional responses to SH.

As principal investigator, the re-entry grant has allowed Boladale to engage in several activities to further her opportunities for training and the agenda of the SHINE project. In June 2023, she visited Brown University in Rhode Island, USA, where she engaged in critical discussions with international mentors and faculty, laying the groundwork for future collaborations and partnerships. Additionally, a mentor from Brown University, Prof Abigail Harrison visited OAU, facilitating meaningful dialogues and collaborative initiatives between the institutions. These initiatives included training seminars, webinars, and discussions focused on the prevention and response to sexual harassment in Nigerian universities. Collectively, the activities involved over 100 participants drawn from the antisexual harassment committee, faculty gender focal persons, civil service organization representatives, researchers, staff, and students. 

The endeavors have not only expanded Boladale’s knowledge and network but have also forged crucial connections for future change-making in the fight against sexual harassment. Between July, September, and October 2023, she presented findings from the study at different national meetings in Nigeria and various international conferences. Some of the conferences include the Royal College of Psychiatrists (RCPsych) International Congress, July 10 – 13, 2023 in Liverpool, UK; Australian Psychosis Conference, September 11 – 13, 2023; in  Sydney, Australia; and the 23rd World Congress of Psychiatry, September 28 – October 1, 2023, in Vienna, Austria. 

Boladale’s connection with CARTA and the SHINE Project reflects the transformative power of educational and capacity-strengthening programs. Before CARTA, Boladale was a dedicated scholar with 15 authored papers in need of a nurturing environment to build scholarly acumen and innovative teaching methodologies. Her academic trajectory underwent a profound transformation within the rich and diverse resource hub of CARTA. The program’s influence significantly enhanced her research expertise, a cornerstone for her academic elevation to the coveted rank of professorship (First Female Professor of Psychiatry at OAU). Also contributing to this milestone was her publication count, which surged to over 35 peer-reviewed papers. 

The program’s strategic interventions, spanning Joint Advanced Seminars (JASes), training workshops, and re-entry grants, nurtured Boladale’s growth as a researcher, educator, and advocate. Equipped with innovative teaching methodologies emphasizing critical thinking, Boladale now nurtures a generation of students who excel academically, fostering a more dynamic learning environment. Collaborating with mentors, she is an advocate for girls, women, and adolescent health, contributing to policy formulation and agenda setting at institutional, national, and regional levels. Her advocacy efforts led to the formation of a mentorship club, bridging the gender gap in research output and fostering a network of empowered female researchers across Africa. 

CARTA celebrates Boladale’s growth, potential to break barriers and pioneer change, and unwavering commitment to combat sexual harassment and safeguard the rights of girls and women. 

CARTA is committed to strengthening institutional capacity in research through a comprehensive and multifaceted approach. This is in recognition that sustainable research capacity requires a holistic transformation that spans individuals, institutions, and systems. Among these approaches is the provision of grants to African partner universities for the development and implementation of specific projects aimed at enhancing research capacity. These grants support initiatives such as curriculum development, research centers, and infrastructure improvements.

The Obafemi Awolowo University (OAU) is one of the partner universities that has benefitted from this initiative. In 2017, the program provided an institutionalization grant to OAU to support the development and adoption of a curriculum based on the CARTA JASes. Through the concerted efforts of CARTA fellows (Melvin Ojo and Sunday Adedini), focal persons of the program at the university, faculty members, and university leadership, the curriculum was approved in 2022 to be offered to all the doctoral students across the 13 faculties of OAU.

A key challenge that OAU had been encountering in pursuit of research capacity was the lack of a unified research methodology course, whereby each faculty offered its own. Stemming from the lack of standardized research training were poor research outputs from doctoral students, conceptually and theoretically weak research theses, and poor capacity of PhD graduates to publish research in journals of high impact. This called for the development of a unified curriculum that would drive a culture of research excellence across disciplines as envisioned with the research methodology course developed through the CARTA grant. Now adopted, the unified research methodology course fills a critical void, equipping doctoral students with essential research skills encompassing critical thinking, literature search, ethical considerations, and research report writing.

CARTA’s contribution was integral throughout the development of the course. Starting with proposal development, the program facilitated protected time for the development team by funding a concept refinement workshop in Nairobi. Further, the program’s monitoring and evaluation aspects ensured alignment with deliverables and provided a responsive framework for troubleshooting. The university- wide adoption of the unified research methodology course is an embodiment of enhanced academic quality, with potential to position OAU as a trailblazer in advancing research training in Nigeria. It is also a demonstration of CARTA’s resounding impact in shaping academic pathways and empowering a new generation of African scholars who can drive meaningful change through rigorous research.

CARTA challenges nigeria

Informal caregivers (ICs), who are family members, relatives or friends of hospitalized patients are a regular sight around hospitals in Nigeria. ICs help inpatients to maintain emotional balance and assist with tasks like medicine administration, communicating with healthcare professionals, and navigating the health system. Some engage in specialized care tasks such as taking samples to the laboratory, emptying urine bags and defecation basins, and moving immobilized patients. They provide this unpaid care because a significant healthcare human resource vacuum exists in our hospitals.

Unfortunately, ICs face significant challenges, which can be worsened by the circumstances under which they support patients on admission. For example, professional care providers often view their presence as counterproductive. ICs are also exposed to vulnerabilities, illness, and decreased quality of life. They lack support and have unmet financial, social, training, and information needs, while also experiencing psychosocial issues.

In this piece, I draw the attention of policy actors in the health sectors of Nigeria to the challenges facing ICs in our hospitals and propose steps for action towards alleviating their plights. The suggestions are based on evidence from a study funded by the Consortium for Advanced Research Training in Africa (CARTA) titled “The Lived Experiences of Migrating Informal Caregivers in a Tertiary Health Facility: Understanding and Action for Health Systems Improvement in Nigeria”. Specifically, the study’s Research Team (Dr. Kudus Oluwatoyin Adebayo, Dr. Mofeyisara Oluwatoyin Omobowale, Rukayat Usman, Funmilayo Omodara and Atinuke Olujimi) documented the experiences of people who travel far from home to care for hospitalized patients while stationed in/around an urban tertiary health facility in Southwestern Nigeria.

One of the issues we raised in our research is: why do relatives “hang around” and live in/around the hospital? To this question, we learned first of all that ICs are constrained to stay and hang around because care-seeking travels take them far from home to places where daily commuting is difficult, costly, inefficient, impractical or impossible. Second, we learned that ICs desire to be near in space, time, and relationship to hospitalized patients. Third, there is policy contradiction between established rules and everyday professional care practice. An IC is expected to be on the ground to help the patient, although the established rule is against it. Fourth, the hospital is using ICs to fill formal human resource vacuum and service inefficiencies. The labor of ICs is being co-opted to make up for health system problems and institutional failures, especially staff shortages. The fifth reason is the clinical status of inpatients. Patients clinically determined to be unstable or in critical or dire condition need supportive care that the hospital and patients themselves cannot fulfill alone.

Additionally, two philosophies of care influence the temporary residence of caregivers in the hospital. The first is based on the culture of care in Nigerian society, whereby relatives view that illness is not for the sick to bear alone. The second philosophy is the practice of holistic care, where health workers try to involve family members in the care process for optimal clinical outcomes for inpatients. Finally, hospitalization is costly for many low-income earners and poor people referred to tertiary hospitals for specialized care. The high cost of staying also applies to relatives who often engage in mobilizing resources needed for the care of an inpatient through the duration of hospitalization.

Apart from why they stay with hospitalized relatives, what challenges do ICs face, and how do these challenges impact their lives? Evidence from our research shows that ICs staying with sick relatives in the health facility experienced health and well-being challenges. These include stress, bodily breakdown, weakness, pain, sleeplessness, and poor feeding. They also experienced mental and psychological distress as they reported feeling sad, unhappy, angry, paranoid, and aggressive towards the situation. They are also at risk of infection and illness because of their presence and prolonged stay in the hospital.

Secondly, the hospital environment is not conducive for ICs. They have challenges navigating the facility while exposed to harsh weather, noise, and smell. The hospital staff reported that caregivers use hospital spaces indiscriminately because of limited access to accommodation and toilet facilities through how they use spaces and disrupt regular hospital operations. These have significant implications for both human and environmental health.

Thirdly, ICs experienced social and economic issues. Socially, ICs reported loss of livelihood, disruption of religious routines and commitments, and support fatigue. There were issues with patient abandonment, absenteeism, and social isolation due to prolonged stay in the hospital. Financial constraint is the most dominant dimension of economic challenges experienced by ICs. They reported accumulated indebtedness and perceived wastage of their limited resources while supporting hospitalization care.

Fourthly, ICs were exposed to security and safety problems during their stay. Although security guards are available in the hospital, the perception of the hospital community as an open community, where entry-exit control is minimal, exposed them to risks, harassment, theft, and fraud. The security concerns and risks are higher for those who sleep outside with their belongings.

Fifthly, ICs experienced relational and attitudinal challenges. These include interpersonal conflicts shaped by information asymmetry, misunderstanding, and language barriers. These conflicts often take violent dimensions as ICs sometimes harass, fight, or beat health workers and other staff.

Finally, ICs have limited access to water, sanitary practices, and hygiene because of inadequate amenities and facilities in the hospital. In a few places with hygiene amenities, access control by the environmental health assistants makes access to them challenging for ICs, as the hospital workers sometimes lock up toilets when there is a shortage of water supply.

What should be done to address the challenges facing informal caregivers? There is need for managers of Nigeria’s health sector to prioritize ICs’ health and well-being as key actors in the Nigerian health system. Hospitals receiving ICs from long distances should design and implement interventions to improve facilities, provide leisure opportunities, support caregivers’ community, and promote their physical and mental well-being.

Education and sensitization, focused on hospitalization education with orientation and planning contents, should be provided by health workers to ICs at the point of referral and upon arrival in the tertiary health facilities. Hospital management should create awareness of supportive services, and encourage caregivers to subscribe to them, especially for those who can afford them. Special caregivers’ sensitivity training should also be offered to hospital staff.

Policymakers at all levels should formulate and implement policies and programs that acknowledge caregivers’ role in hospitalization care in Nigeria. Hospital managers should identify opportunities for creative synergies between ICs and the formal care workforce and invest in continuing process evaluation of service delivery with the aim of improving efficiency. Furthermore, hospitals should strengthen existing initiatives designed to reduce the presence of caregivers and lessen the burden of the ones still hanging around.

More importantly, the government should provide funds and support public health facilities to address institutional dysfunctions that make ICs’ presence a necessity, especially in tertiary health facilities. The government should also drastically reduce health inequalities while hospitals revamp health institutions by integrating disparate but interlinked services. Also, by leveraging on technology to improve efficiency in payment and pharmacy services, the dependency of tertiary health facilities on ICs will be reduced.

Informal caregivers are central to the care of hospitalized patients in Nigeria. Despite the limited acknowledgment of their indispensable roles and contributions, they will remain critical in the country’s health system until the factors creating the gap they are filling are addressed.

© Dr. Kudus Oluwatoyin Adebayo is of the Institute of African Studies, University of Ibadan, Nigeria, the School of Public Health, University of The Witwatersrand, South Africa, and a graduate of the CARTA Fellowship (cohort 6). You can reach him directly via email at: oluwatoyinkudus (at) gmail (dot) com.

This article has been published over 20 times by different media outlets. 

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