PAEDIATRIC HAEMATOLOGY AND ONCOLOGY (PHO) PROGRAMME AT BOTSWANA BAYLOR TRUST
PAEDIATRIC INFECTIOUS DISEASE CLINIC (PIDC)
The PIDC at Botswana-Baylor Trust
provides HIV testing, treatment, care, and
support services to children, adolescents,
and their families. Our current patient load
at the COE is roughly 2,462 active patients,
most of whom receive follow-up care
every three months as recommended.
Botswana-Baylor Trust Executive Director Dr. Mogomotsi Matshaba
receiving children’s Christmas Gifts from MASCOM Wireless; The
Mascom Chief Executive Officer Mrs. Dzene Makhwade-Seboni
(left) and Mascom Chief PR and Communications Officer Mrs.
Tebogo Lebotse Sebego (right)
Improved communication with adolescents making it easier for them to open up to staff about their problems and challenges.
Tracked lost to follow-up patients through home visits by the In Reach team.
Reduced hospitalizations.
Challenge patients now achieving viral load suppression rates.
Throughout 2020, the PIDC helped support its challenged patients in achieving viral load suppression
and addressing their health, wellness and livelihood. These challenges were related to the social
determinants of care–such as mental health, social support networks, education, employment and
financial circumstances. The clinic took measures to adapt to these challenges through innovation of
new strategies to combat patients’ adversities.
Adolescents and young adults struggled with adherence to their medications due to challenges including
mental health disorders (depression, anxiety, psychiatric symptoms), poor family support, and stressful
romantic relationships. Botswana-Baylor Trust provided resources and enhanced interventions to promote
long-term adherence in this population. This included dedicating personnel and other resources to
enhance the screening and management of mental health disorders in this population.
Additionally, it was found that many young adult patients were neither in school nor working, leading
to financial challenges and the inability to meet transportation costs to the clinic for medical
appointments, resulting in gaps in medication adherence. Botswana Baylor Trust provided transport
support to extreme cases.
Parenting challenges were also common among adolescents and young adults. Many of the young
mothers were unemployed and experienced challenges in fulfilling motherhood responsibilities.
Botswana Baylor Trust acquired additional resources for interventions to support young parents and
their children, such as transport reimbursement and skills training for young mothers through the
Finding the Leader Within Program.
Some adolescents and young adult patients refuse to return to care despite multiple follow-ups. Such
cases are at high-risk of mortality as they remain out of care for prolonged periods and tend to return
to care when they are very sick. Botswana Baylor Trust social workers, nurses, and community health
workers conduct multiple home visits to track and engage those patients.
These challenges were compounded by new challenges brought in by COVID-19, which included: movement
restrictions resulted in missed blood sample collections, clinic and medication refill appointments, loss
of loved ones, parents, relatives, neighbors, schoolteachers, workers and clinicians; co-infections of HIV
and COVID-19; and anxiety and fear of the unknown. To address these challenges, the COE implemented
strategies to increase patient safety during the epidemic, which included: InReach services, improving
communication with adolescents from the clinic and other measures (detailed in the Covid-19 Pandemic
and Response section).
PAEDIATRIC INFECTIOUS DISEASE CLINIC (PIDC)
The Screening Clinic serves as an entry point to the COE for all clients seeking to know their HIV status.
Though some clients seen at the Screening Clinic are self-referrals, most are referred from other health
facilities. Four to six weeks after birth, babies born at Princess Marina Hospital and other health facilities
are referred to the COE’s Screening Clinic for DNA/PCR testing.
DNA PCR tests: Over the reporting period, 22 babies were screened and one tested HIV positive.
RAPID test: A total of 37 rapid HIV tests were done, and four people tested positive. The total number of
patients diagnosed with TB was five.
Cervical cancer is due to the abnormal growth of cells arising from the cervix that can invade or spread to
other parts of the body. The screening test aims to detect changes early on that otherwise could develop
into c cancer if left untreated. Botswana-Baylor Trust started the screening program in November 2016,
targeting sexually active adolescents and young women who are older than 15 years. Cervical cancer
screening is integrated into routine clinical services offered at the Botswana Baylor Trust clinic. When the
programme started, the Botswana national cervical cancer screening guidelines recommended screening
only for women aged 30 – 49 years, but now, after reviewing screening results from different sites, the
national guidelines have been reduced to 25 years of age.
During the reporting period, we screened 12 patients using the pap smear test and visual inspection under
acetic acid methods, and they tested negative for human papillomavirus, a cause of cervical cancer. One
patient was diagnosed with Bartholin’s cyst and was referred for drainage at the Gynaecology Clinic at
Princess Marina Hospital.
Plans are to screen all sexually active adolescent girls and young women coming to the COE and treat
them appropriately to prevent cancer.
NB: Screening was slowed down from March 2020 in compliance with COVID-19 restrictions.
CLINICAL PSYCHOLOGY
Unsurprisingly, adherence challenges and depression remain the highest reported cases indicating a
strong relationship between the two. Patients, especially adolescents who are referred for persistent
adherence challenges, report some signs of depression. This highlights the importance of depression
and other mental health screening for all patients with adherence challenges. Therefore, mental health
support for HIV-infected youth is important not only for quality-of-life concerns but also regarding HAART
adherence and biomedical and health outcomes. The total number of patients seen at the department
was 3701, with the most reported pressing issues being adherence (705), depression (588), and delinquent
behavior (445). And the least reported issues were acute psychosis (1) and attention deficit hyperactivity
disorder (ADHD) (3).
SOCIAL WORK
The social work department at the COE provides counseling,
care, and support services to Botswana Baylor Trust patients and
their families. Home visits for emergency cases lost to followup patients, and adherence and supportive counseling were the
main services provided by our Social Worker. The COE Social Work
office supported clients referred through the OVC support project
and participated in COE-run research. Ms. Tembwe participated in
Focus Group Discussions with HIV-positive mothers as part of the
HIV-Exposed Infant Testing Study funded by Global CommunitiesBotswana. Other services that social worker Ms. Tembwe provided
included soliciting children’s Christmas gifts from various donors.
The social work office also served as a liaison with relevant
community-based stakeholders, such as the community social
workers, the police, the magistrate, and community-based
organizations. The social worker also identified and referred
families with at-risk children for HIV to testing and enrolment in
care, addressed the needs of children and families living in difficult
circumstances, and engaged all family members including children
in adherence counseling sessions at home.
“When you get into a home, you
see what is really happening. If a
child doesn’t have enough food
to eat or there is no space for
privacy and there are nine people
in a house with two rooms or
many adults in the home are not
working, it’s important for me to
see that — not to be sympathetic,
but it’s to empower me to find
sources of help to change the life
of that child.”
Community Health Worker
EXPANDED IN-REACH PSYCHOSOCIAL
SUPPORT SERVICES FOR FAMILIES
AFFECTED BY HIV AND CHILDHOOD
CANCER
Although we care for our clients in the clinic and public hospitals, we have realized that some families
are not able to make it to the clinic for various reasons. This usually has to do with severe disease,
depression, mental illness, stigma, food insecurity, financial issues and behavioural problems among the
youth. We developed the In-Reach program to address those issues and overcome impediments that
may affect these vulnerable populations through home visits and assisting families, new and existing,
who are struggling. The In-Reach project is currently sponsored by the Allan and Gill Gray philanthropy.
In-Reach provides a wide variety of clinical, psychosocial and other supports to individuals and families
affected by HIV and childhood cancer. We use the Individual Care Plan as the map to service delivery.
Services take place in the homes or other independent settings based on the unique needs of the
individual. We deliver the highest quality services possible by ensuring that everyone receives the right
support and frequency by appropriate cadres of staff including doctors, nurses, social workers, community
health workers and psychologists.
In March 2010, the In-Reach program received recognition from USAID’s AIDSTAR-One Promising Practices
Database. After a thorough vetting process, In-Reach became just the second NGO program in Botswana
to achieve this prestigious recognition.
During the reporting period, a total of 48 families affected by childhood cancer were supported with
psychosocial and physical support through the In-Reach programme. 36 patients/families were referred
and received counselling services, and 12 patients were referred for transport support. 14 children with
cancer died, requiring additional psychosocial support for the bereaved families. Botswana-Baylor has
learned that intense counselling is necessary for all families with a child with cancer. A significant number of the families are low-income. There are high transport costs for families affected by childhood cancer,
due to the need for frequent hospital visits. More resources need to be mobilised and committed to
supporting transport reimbursement for these families. We are thankful to the Allan and Gray Philanthropy
and Ministry of Health and Wellness (MOHW) funding that contributed to transport reimbursements.
The program mainly targeted HIV patients who were defaulters, Lost To Follow-Up LTFU, those who
had family conflicts, child negligence, unsuppressed viral load or treatment refusal. Identifying and
reconnecting the patients back to care required multiple home visits and intense counselling from a
nurse, social worker or psychologist to address issues that drove patients from care in the first place.
The In-Reach intervention package included communicating with the patient regularly; enlisting the
support of family members; referral for other HIV/AIDS support services; and in the case of minors,
involvement of local social workers and the police.
122 families were visited comprising of 125 patients. Of these, 4 were deceased and not reported; 29
were self-transfer outs to other clinics. 92 of the 125 patients were offered intense counselling and
returned to care and reinitiated onto highly active retroviral therapy (HAART). However, 27 of the 92
patients who were re-connected to care reverted to defaulting and needed further intense follow-up.
The reasons for missing and defaulting treatment are shown in Figure 1. The most reported reasons
for missing or defaulting from treatment were behavioural followed by self-transfer out and lack of
transportation money.
We have learned that various limitations such as out-of-date client records, patient relocations, wrong
phone contacts, lack of disclosure to the family, and busy lifestyles (school, work) negatively affected
implementation of the In-Reach visits and service delivery. Efforts will be made to keep patients phone
contacts and physical addresses up-to-date all the time. Additionally, virtual programming is emerging
as a crucial approach to service delivery. Training is needed to empower staff on e-service delivery to
complement in-person In-Reach interventions.
Figure 1: Reasons for Missing Clinic Appointments and Defaulting from Treatment
TEEN CLUB
Teen Club is a monthly peer support intervention established in 2005 for HIV-positive adolescents who are
between 13-19 years old. Teen Club empowers youths to build positive relationships, improve their selfesteem, and acquire life skills through peer mentorship, adult role modeling, and structured activities.
Teen Club sessions are guided by an 11-month, standardized curriculum with broad themes such as ART
adherence, love, sex, and healthy relationships, as well as activities such as a talent show. The Teen Clubs
are supported through funding from Global Communities-Botswana and UNICEF.
The declaration of COVID-19 as a pandemic by WHO in March 2020 led to the suspension of in-person
Teen Club Sessions. Consequently, a WhatsApp group was created to support the teens to remain in
touch and interact with each other. A total of 58 teens remained active in the WhatsApp group with
fluctuating levels of participation by the members. Lack of access to smartphones and the internet
prevented other teens to join or be active in the group. In addition, 127 teens were contacted through
phone calls to check on their health and wellbeing with a special focus on whether they adhered to their
ART and clinic appointments. A virtual Teen Club model has been developed with support from UNICEF
and will be implemented starting November 2021.
In collaboration with MOHW and UNICEF, Botswana Baylor Trust conducted chart reviews in Gaborone,
Selibe-Phikwe, Boteti, Serowe, Kweneng East, and Tutume to assess the impact of COVID-19 pandemic
on outcomes of interest among ALHIV aged 13-18 years who were enrolled in Teen Clubs in those districts.
The outcome of the charts reviews for the 242 teens are shown in Figure 1. The results show impressive
clinical outcomes of Teen Club members during the COVID-19 epidemic.
Figure 1: Clinical Outcomes of Teen Club members during the COVID-19 epidemic.
“COVID-19 control and prevention measures, including lockdowns and physical distancing, have had a significant
impact on adolescent care programs. Some of the activities that have been suspended since March 2020 include
the Young Adults Support Groups; Camp Hope and Weekend Camps, and comprehensive models of care for ALHIV
in the six districts. Alternative virtual programming is being planned and will be implemented in the upcoming
financial year”.
BOTSWANA COMPREHENSIVE CARE AND
SUPPORT FOR ORPHAN AND VULNERABLE
CHILDREN (OVC) PROJECT
Botswana has a growing population of orphans estimated at 6.28% of its entire population according to
the 2011 National Population Census. Children who are categorised as vulnerable in Botswana include
those who are orphaned, living in abusive environments, living with a sick parent or guardian, living with
HIV, living with a disability, or living outside of family care.
Through the generous funding of PCI-Botswana, Botswana Baylor Trust implemented the Botswana
Comprehensive Care and Support project in seven PEPFAR priority districts (Kweneng East, Gaborone,
Mahalapye, Kgatleng, Southern, Bobirwa, Serowe).
The project aims to improve the health, well-being through direct service delivery, referral, and networking,
and through capacity building for orphan and vulnerable children service providers. Botswana Baylor
Trust’s role in this project is to provide care and support services to OVC living with HIV from birth to 17
years old and their families. Table 1 below shows key services provided over the reporting period.
Table 1. OVC Project Key Service Delivered to OVC and Families
*Numbers are equivalent to the total number of individual clients offered services
TUTORING
The tutoring programme was established in 2008 to support school-age patients with learning difficulties
and/or poor academic performance. Over 200 children and adolescents have received this free academic
assistance over time. COE patients often miss school to attend clinic appointments, and like any schoolgoing children, some will need tutoring for their grades to improve. COE clinicians, community health
workers, psychologists, and social workers assess patients’ academic performance during consultations
and those with grades of ‘C’ or below are referred to the program for intervention.
The COVID-19 pandemic mitigation strategies continued to prevent the holding of in-person tutoring
sessions. However, the COE continued with a ‘low-tech’ program utilizing text, WhatsApp messages and
phone calls to provide academic support to tutees. A total of 15 tutees accessed the remote tutoring
sessions facilitated by 15 dedicated volunteers who largely came from Botho University in Gaborone. 70%
of sessions focused on the sciences and 30% on math. Lack of access to phones and the internet were
common challenges to accessing tutoring support.
FINDING THE LEADER WITHIN PROGRAMME
The COE continued its partnership with Stepping Stones International (SSI) to implement the Finding the
Leader Within Programme. The programme targets out-of-school and unemployed youth between the
ages of 16-25 years. The six-month curriculum focuses on leadership development, career and vocational
guidance, healthy and productive lifestyles, financial literacy, and information and technology skills,
entrepreneurship, and employability pathways. Guest speakers often visit to share their experience and
knowledge in their fields. The sessions run four days a week (Tuesday through Friday) and are facilitated
by COE staff and volunteers. Table 2 below shows the program’s output over the reporting period.
The outreach program aims to strengthen the capacity of peripheral health facilities across Botswana to
optimize treatment and care services for HIV infected children, adolescents, and young adults through
the clinical mentorship of healthcare providers. Composed of a nurse prescriber and physician, the
outreach team visits sites once per month. During the visits, the team consults and supports patients
with virological failure, attends to other patients that require special care in the IDCC and onwards,
and conducts side-by-side mentoring of medical officers, nurse prescribers, and other healthcare
professionals. Didactic sessions are structured around the fundamentals of pediatric and adolescent HIV
treatment and care.
Despite the COVID-19 related travel challenges, the Botswana Baylor Trust outreach teams secured
Essential Workers’ travel permits and conducted monthly visits to Letlhakane Primary Hospital, Rakops
Primary Hospital, Sefhare Primary Hospital, Mahalapye District Hospital, Shoshong Clinic, Kanye Main
Clinic, Thamaga Primary Hospital, Scottish Livingstone Hospital, Good-hope Primary Hospital, Deborah
Retief Memorial Hospital, Mabutsane Clinic, Khakhea Clinics, Kang Clinic, Hukuntsi Primary Hospital,
Sedie Clinic, and Letsholathebe Memorial Hospital. A total of 1571 patient consultations were conducted.
Of these, 273 were for failing patients, and 1298 with other challenges. A total of 162 healthcare workers
including, doctors, nurses, social workers, pharmacists, and other professionals, were mentored.
The feedback shows that the ART site managers and staff highly appreciate the mentorship and clinical
support. Going forward, we will mobilise for increased referrals of failing patients. Additionally, outreach
teams will also intensify training and mentorship of healthcare workers on ART adherence and psychosocial support for adolescents, young adults, and their caregivers.
VISITING SCHOLARS PROGRAMME
The mission of the Botswana Baylor Trust visiting scholars’ programme is to increase understanding
of and to build capacity for pediatric HIV and cancer treatment and care globally. The majority of
the scholars come from the University of Botswana Medical School in Gaborone and Baylor College
of Medicine in Houston, Texas. The visiting scholars spend most of their time in the COE and with
the Paediatric Oncology and Haematology ward at Princess Marina Hospital, shadowing and working
alongside experienced clinicians and researchers. Some of the scholars spend time with the outreach
teams at other ART sites. 54 scholars including residents, medical students, and nurse prescribers
participated. International scholars’ rotations were temporarily suspended in March 2020 due to the
COVID-19 outbreak. The rotations will resume as international travel restrictions are eased.
COLLABORATIVE AFRICAN GENOMICS NETWORK
(CAFGEN)
The mission of the Collaborative African Genomic Network (CAfGEN) study, part of the H3Africa
Consortium, is to create a collaborative, multidisciplinary, multi-institutional, inter-and intra- country
network of scientists, clinicians, and researchers who use genomics approaches to study gene/pathogen
interactions for HIV/AIDS, its co-morbidities, and other diseases among diverse pediatric African
populations. CAfGEN is funded by the U.S. National Institute of Health. The main implementing partners
include the University of Botswana, Baylor College of Medicine Children’s Foundation – Eswatini, Makerere
University, Baylor College of Medicine Children’s Foundation –Uganda and Baylor College of Medicine –
Houston. The Ministry of Health and Wellness and the Ministy of Science and Technology are important
stakeholders in this initiative.
Starting in 2014, CAfGEN has accomplished most of its aims during the first phase of funding and now
is on the second phase of the project. The second phase of the CAfGEN study participant recruitment
will be continuing until 2022. The study targets to recruit paediatric and adolescent patients (birth to
25 years). It also aims to expand and recruit a cohort of active tuberculosis (TB) cases and household
contacts.
This year, the target of 400 participants was reached, which included 200 long term non-progressors
and 200 rapid progressors. The study protocol amendment was approved to increase recruitment to
600 participants in the following year. The challenges encountered this year was the inability to reach
the TB target of 20. Only four TB cases and four controls have been recruited.
CAfGEN Community Advisory Board meetings resumed virtually this year. However, other activities
that required in-person meetings were suspended. CAfGEN has intensified public engagement and
interaction through online platforms such as Twitter (@CAfGEN1) and Facebook (https://www.facebook.
com/cafgen) accounts.
An important part of this programme included multidisciplinary training of CAfGEN staff. The Botswana
Baylor Trust registered as a site for the “Introduction to Monitoring and Evaluation in Global Health”
training with the University of Washington - Department of Global Health e-Learning Program. The course
began on January 17 to March 30, 2021. A total number of 40 participants from CAfGEN sites (Botswana,
Eswatini, and Uganda) enrolled, among these participants, one was from the Botswana Ministry of Health
and Wellness. Thirty-nine participants completed the course and graduated. The participants acquired
monitoring and evaluation skills through e-learning mode site facilitators, which included facilitation
skills and overall communication etiquette.
This multidisciplinary approach was supplemented by other training modules. To
be abreast with current international research standards, staff continue to receive
online training on Good Clinical Practice through the Collaborative Institutional
Training Initiative. Five CAfGEN Ph.D. trainees continued with their studies at the
University of Botswana and are currently working on their theses.
The Monitoring and Evaluation training course was attended by staff from various
COE departments.
This study is a collaboration of a multidisciplinary
team of researchers from the University of Botswana,
the University of Pennsylvania, and Botswana Baylor
Trust. The 2-year intervention study is funded by
the NIH. It aims to design and evaluate a theorybased, developmentally and culturally appropriate,
stigma-reduction intervention for adolescents living
with HIV (ALWH) in Botswana. The HIV stigmareduction intervention will be an adaptation of
Teen Club, an existing intervention that has been
implemented with ALWH 13 to 17 years of age by
Botswana Baylor Trust since 2005. The findings from
this mixed-methods research, conducted in both
rural and urban areas (Molepolole and Gaborone),
along with input from a Community Advisory Board
will be integrated with Social Cognitive Theory to
adapt the existing intervention. This will be followed
by a randomized controlled trial to determine the
adapted intervention’s feasibility and acceptability.
Another important goal is to build capacity at the
University of Botswana and Botswana Baylor Trust
to develop interventions to improve HIV prevention,
treatment, and care. We will also conduct a series
of Science of Behavior Change workshops for
healthcare workers and other service providers in
Gaborone and Molepolole. During the reporting
period, the study team completed the collection of
baseline data from 160 ALWH on their experiences
and perspectives regarding the effects of stigma on
the health and wellbeing of ALWH.
REDUCING
STIGMA TO
IMPROVE HIV/AIDS
PREVENTION,
TREATMENT, AND
CARE AMONG
ADOLESCENTS
LIVING WITH HIV
IN BOTSWANA
FRIENDSHIP BENCH STUDY
The Friendship Bench is a youth lay counsellor problem solving therapy-based (PST) technique modelled
after an original study conducted in Zimbabwe by Chibanda et al, as a treatment intervention for
adolescents showing symptoms of mild to moderate depression, anxiety, or substance use. PST involves
talking with a person who has been trained to teach ways to cope with difficulties through a therapybased counselling session. It helps people adopt ways to achieve goals and reduces depression and
anxiety. This study aimed to assess the safety, feasibility and efficacy of an adapted version of the
“Friendship Bench”. It targeted the population of adolescents at risk for and living with HIV and was
implemented in 5 phases.
In the first phase, a stakeholder group was established that consisted of professionals, youth, parents,
educators, and other key informants to adapt the intervention plan to the adolescent population and
the setting. The team developed a manuscript in the Community Mental Health Journal that described
their recommended interventions on supporting lay counsellors by educating and training them and
recommending models of care with specific adaptions toward the adolescent and HIV population.
The second and third phase involved pilot testing the interventions on screened youths living with HIV at
Baylor clinic. In the fourth and fifth phase, the Friendship Bench model was fully tested on its feasibility
and linked trained lay counsellors to HIV positive youth with symptoms of depression, anxiety, and
substance abuse.
At the time of this annual report, each of the phases are complete and the data is being analyzed. In
our brief review of the data, we found that lay counsellors enjoy their work and feel they are making a
difference. Sessions were recorded and the study team assessed their performance through the audio
files. The program was found to be safe and effective. Counsellors were found to take their training
seriously and as a result, the participants of the program had a noticeable drop in their pre- versus
post- participation depression symptoms scores. Both lay counsellors and participants of the study
were challenged with rescheduling some sessions due to school or work commitments. Despite these
challenges, both counsellors and participants felt empowered by the program and showed a great
interest in integrating the service in their communities. Botswana-Baylor hopes that this program can
also be integrated into its larger clinic structure.
T H E N T E M O G A S T U D Y / P C N B
The tutoring programme was established in 2008 to support school-age patients with learning difficulties
and/or poor academic performance. Over 200 children and adolescents have received this free academic
assistance over time. COE patients often miss school to attend clinic appointments, and like any schoolgoing children, some will need tutoring for their grades to improve. COE clinicians, community health
workers, psychologists, and social workers assess patients’ academic performance during consultations
and those with grades of ‘C’ or below are referred to the program for intervention.
The COVID-19 pandemic mitigation strategies continued to prevent the holding of in-person tutoring
sessions. However, the COE continued with a ‘low-tech’ program utilizing text, WhatsApp messages and
phone calls to provide academic support to tutees. A total of 15 tutees accessed the remote tutoring
sessions facilitated by 15 dedicated volunteers who largely came from Botho University in Gaborone. 70%
of sessions focused on the sciences and 30% on math. Lack of access to phones and the internet were
common challenges to accessing tutoring support.
FINDING THE LEADER WITHIN PROGRAMME
Ntemoga Study: Validating a Computerized Neurocognitive Test for HIV-affected Children in
Botswana.
Neurocognitive impairments are more common among school-aged children who are HIV affected (i.e.
living with HIV (HIV+) or HIV-exposed in utero but uninfected (HEU). Impairments are most pronounced
in the domains of episodic memory, attention, sensorimotor/processing speed and executive functioning.
Relevant modules of the Penn Computerized Neurocognitive Battery (PCNB) were culturally adapted for
the identification of neurocognitive problems among HIV-affected children in Botswana. The PCNB can be
administered by trained lay workers. In the past year, we have completed key aspects of the preliminary
validation of the Botswana-version of the PCNB. We assessed the structural validity of the adapted PCNB
using confirmatory and exploratory factor analysis (CFA/EFA) evaluating the speed, accuracy, and efficiency
of the 13 PCNB subtests. We calculated intraclass correlations coefficients (ICC) with one-way randomeffects models, controlling for age and practice effects to assess test-retest reliability. Criterion validity
was assessed by comparing PCNB scores to a professional consensus definition of cognitive impairment
and calculating area under receiver operating characteristic (ROC) curves. The adapted PCNB took an
average of 60-90 minutes to administer. Data from 209 HIV-affected children between the ages of 7-17
years showed acceptable fit with CFA, supporting the design of the battery to measure the domains of
episodic memory, complex cognition, sensorimotor/processing speed, and executive function. Sixty-five
children completed the PCNB and repeated it within 8-12 weeks; ICCs for overall PCNB accuracy, speed,
and efficiency scores (ICCs>0.80) and domain scores (ICCs=0.66-0.88) were within ranges traditionally
considered adequate to high. Seventy-two HIV+ children were classified as cases (i.e., with cognitive
impairment; N=48) or controls (i.e., without cognitive impairment; N=24). Discrimination between cases
and controls using the PCNB was acceptable. Preliminary validity and reliability assessments show
promise for the PCNB to be a useful tool to streamline neurocognitive assessments for school-aged HIV+
and HEU children in resource-limited settings. Stakeholder perspectives have also been solicited to help
guide the implementation of the PCNB in Botswana after validation is complete. We anticipate completing
enrollment of the ~600 child validation cohort to complete assessments of additional aspects of validity
in 2022. Ultimately, we expect that the PCNB will allow for detection, characterization and support for
children with neurocognitive impairments in Botswana and other resource-limited settings.
Paediatric Haematology and Oncology (PHO) programme at Botswana Baylor Trust, supported by Global
HOPE provided much-needed services despite the COVID-19 pandemic challenges. The Global HOPE
(Haematology-Oncology Paediatric Excellence) initiative, a partnership between several institutions,
including the Texas Children’s Cancer and Haematology Centre and the Botswana-Baylor Children’s Centre
of Excellence Trust, has improved the care of children with cancer and blood disorders in Botswana since
2007. The programme had steady outpatient and inpatient service attendance. New COVID-19 measures
that enhanced patient and staff safety were routine screening and testing for COVID-19, temperature
screening, masking, sanitisation, social distancing, work from home, leave and work in shifts, among
others. The government implemented measures, such as lockdowns, travel restrictions and curfews, led
to a temporary decrease in the number of new patients referred and other patient care-related activities.
The cumulative number of patients attended by the PHO programme from October 1, 2016, to June 30,
2021, according to disease type are shown in Tables 1 and 2.
A patient enjoying a ball game during the survivors party scaled
One of the survivor attending survivors party
TRAINING AND CAPACITY BUILDING
Over the past year, training activities were also modified to fit COVID-19 safety measures (travel, hosting
group events, etc.) We trained 378 health care workers. The COVID-19 restrictions led to new training
approaches such as the hub and spoke model. The key training included childhood cancer, palliative care
and hemophilia training. The team readjusted the training strategy to use a train-the-trainer and cascade
model to meet the aims and objectives of this project. As a result, health workers from different regions
were invited to Princess Marina Hospital for on-site training to empower them to deliver the training
content at their institutions. The outcome of this training has led to a greater reach of health workers
than earlier planned.
A presentation on Pediatric Palliative Care and Pain Management was conducted at three hospitals,
reaching a total of 82 healthcare workers. The training was focused on raising awareness of pediatric
palliative care and pain management in children. Healthcare workers were educated on how to identify
patients eligible for palliative care, including non-PHO patients, and morphine use on pediatric patients.
The presentation helped dispel the common myth that morphine is not safe for use in children.
Additionally, the team has made significant progress
on haemophilia healthcare worker outreach training as
part of a multi-stakeholder grant from the Novo Nordisk
Hemophilia Foundation to expand services for children
affected by bleeding disorders in Botswana. The PHO
team developed a curriculum to train healthcare workers
from disparate parts of the country in the diagnosis and
management of haemophilia and held two training sessions
on bleeding disorders. The training team was composed
of multidisciplinary healthcare professionals from
multiple institutions with 20 healthcare workers, deemed
Haemophilia Champions from 14 institutions.
In March 2021, members of the PHO team visited
Malwelwe Health Post and Kanye Seventh Day Adventist
Hospital alongside the Hemophilia Champions from those
catchment areas. During these visits, with supportive
supervision from the PHO team, the Champions presented
lectures on hemophilia to other healthcare workers,
consulted on hemophilia patients and demonstrated factor
administration. The train-the-trainer model has been a big
success, with 28 additional healthcare workers reached by
these trainings thus far! The PHO team plans to continue
these visits with the hemophilia champions to scale-up
capacity building of community health care workers and
bring hemophilia care closer to the patients.
Image: Participants engaged
in self-cannulation simulation
using an IV Trainer so to
teach self-infusion to their
hemophilia patients.
PALLIATIVE CARE SERVICES
The PHO programme continued to provide palliative care services to patients throughout Botswana. Our
palliative care efforts focus on pain management and management of distressing symptoms, caregiver
education, and counseling on prognosis for patients with disease progression. The Pediatric Palliative
Care team outreach visits were reduced due to COVID-19 travel restrictions. Nonetheless, the team
managed to make visits within Greater Gaborone and even to the northern Botswana districts of Serowe,
Selebi Phikwe, Francistown and Nata. A total of 16 patients benefited from palliative care home visits
Additionally, the monthly on-site Palliative Care clinic for both PHO and non-PHO patients served a
total of 91 patients. One important aspect to note is that this palliative care clinic does not only include
children with cancer and blood disorders due to the paucity of palliative care services in general at PMH.
The palliative team participated in the Palliative International Day celebrations with the Ministry of Health
and Wellness.
PSYCHOSOCIAL SERVICES
The Thrive Volunteer Program continued to provide supportive care and play therapy to PHO patients in
Botswana. The program found creative alternatives to carry on their weekly ward visits and has piloted
virtual visits via Zoom since November 2020. Those virtual meetings, led by one Thrive volunteer, have
been very successful and have provided wonderful distractions and constructive play time for children
while hospitalized. A virtual dance party on the “Jerusalema” dance challenge, which is a global sensation,
was organized, as well as several book reading sessions to the oncology ward and to smaller groups for
children and mothers. Botswana is now hosting those virtual sessions at least twice a month. All sessions
are thoroughly enjoyed by the children in the ward
Since March 2020, the psychosocial Unit has hosted 17 children play, teen and caregiver support group
sessions. These support group sessions are held once a month on different topics. Conversations usually
revolve around topics that the groups feel are essential to them.
Images: Left-A Thrive volunteer reads to children and parents via Zoom.
Right-Sewelo Sosome, Social Worker, reads to everyone in the ward classroom.
BEREAVEMENT AND GRIEF SUPPORT
One of the prominent challenges in Botswana is the lack of referral resources for grieving caregivers to
access sustainable and consistent psychosocial support. Sadly, many regions in Botswana do not have a
structure that helps families in their grieving process. A PHO social worker is bridging this gap by providing
in-depth counselling sessions and bereavement support for caregivers and families who have lost a
loved one. Over the past year, our caseworker has helped over 40 families by conducting home visits to
provide emotional and grief support.
CHILDHOOD CANCER AWARENESS
The PHO programme established relationships with major media companies to increase awareness on
childhood cancer and haematology diseases among the general population. Over the past year, some
team members participated in TV interviews and have engaged TV, radio stations, and newspaper to
deliver PHO awareness messages to the general public all of which are described below.
The ‘Tsabotsogo’ television programme on Botswana Television chose to highlight the PHO programme.
The team spoke about childhood cancer recognition, diagnosis, treatment, and referral and pediatric
cancer survivorship. Three mothers and one teenage survivor were also interviewed about their own
stories and cancer treatment experience. This was an exciting opportunity to raise public awareness on
childhood cancer nationwide.
Image: Palliative staff during visits /
Nursing Education in Malawi
PATIENT AND FAMILY CENTRED MATERIALS
For over two years now, the PHO team has been working with Mango Tree, a Uganda-based company
that specializes in designing culturally appropriate health education tools, to create patient and familycentered educational materials to enhance pediatric oncology knowledge among caregivers and patients.
This past year, Mango Tree and the PHO programme have developed tools and piloted and pre-tested
them with the patients and caregivers. Once the tools are complete, they will be translated into the
local language and the clinical team will be trained on how to administer the tools. The set of tools
include emotion flashcards that depict emotions in a cartoon style to make them easy to identify and
understand. These are intended to be used by the social worker during counseling sessions to help
facilitate discussions about difficult emotions that patients may be experiencing during the cancer
treatment journey. Other tools include a ‘chain game’ to discuss myths and misconceptions about cancer,
a ‘decision tree’ to start difficult conversations, and the creation of a mascot to be present throughout
the tools. The chosen Mascot is a zebra, the national animal of Botswana.
The process is nearing completion. A “training of trainers” was conducted on March 31st with PHO staff,
patients and caregivers. The tools will be finalized in the next months, and PHO programme has started
to work on an implementation plan, with the idea of empowering caregivers and older patients to educate
their own families and communities about paediatric cancer.
FEBRUARY CANCER AWARENESS DAYS – WORLD
CANCER DAY AND INTERNATIONAL CHILDHOOD
CANCER DAY
In partnership with local stakeholders, PHO programme continued to find creative ways to continue
raising awareness for paediatric cancer and blood disorders despite the COVID 19 challenges.
There was a lot of activity surrounding World Cancer Day on February 4th, 2021, and International
Childhood Cancer Day on February 15th, 2021. These activities included social media posts with images
curated by the PHO programme, Global HOPE team, and shared via First Lady Neo Jane Masisi, Texas
Children’s, Union for International Cancer Control (UICC), and international members of the Global HOPE
team, among others
On February 15, Botswana celebrated the International Childhood Cancer Day. This year’s International
Childhood Cancer Day’s theme was the “Tree of Life”– a universal symbol of growth and renewal, to
send a powerful message that childhood cancer can be cured and that the well-being of survivors can
be achieved if all stakeholders continue acting resolutely together in key areas. Lions Club of Phakalane
offered special gifts (toys and snacks) to children and families in the paediatric ward.
The collaborative efforts deployed in Botswana to celebrate these cancer awareness days despite the
pandemic is a clear demonstration of the strong local communities’ engagement on childhood cancer
and blood disorders.
Instead of Remembrance Day to celebrate the lives of patients that passed away this past year, the
clinical team partnered with a local artist in Gaborone on a portrait project, called “Palliative Portraits”
to support the long-term memory of children on their cancer treatment journey. This project intends
to provide families with a keepsake drawing of their child before their diagnosis so that they can have a
tangible photo by which they can remember their child.
To date, six portraits have been completed and presented to the families, who were deeply appreciative
of the gift to remember their child. Most recently, one portrait was given to the family at the funeral of
their child and the family was very touched. Below are several examples of the beautiful portraits given
to the families.
Images: Social media posts for World Cancer and International Childhood Cancer Days
