Discussion:
The WHO GICC is building momentum within the speciality of pediatric
oncology nursing. This paper provides the perspective and amplifies the
voice of African pediatric oncology nurses and their advocacy to
prioritize services for children with cancer at national, regional and
international levels.
The most fundamental and essential concepts in pediatric oncology
nursing are compassion and compassionate care. Pehlivan and Güner argue
that “compassionate behaviour requires understanding others’ value,
establishing a relationship with them, and responding in a way that is
meaningful for that person” 12. A patient, parent and
healthcare provider empirical model demonstrates four key domains in
pediatric oncology compassion care (beneficence, human relating, seeking
to understand, and attending to needs) 13. The four
domains align with those which nurses described as their strengths
during the 2017 SIOP Africa Congress (humanization of care for children,
empathy for the patients during their treatment period, pain assessment
and control using validated tools and good communication skills) despite
the challenges they face in their hospital settings. Sedaghati et al.
further report that the majority of oncology nurses have positive
attitudes towards empathic behaviour with cancer
patients14.
Educational opportunities such as Project ECHO Seminars for nurses in
sub-Saharan Africa, and nurse training activities within the Francophone
Africa Pediatric Oncology Group (GFAOP) and the Collaborative Network
for Childhood Cancer Care and Research (CANCaRe Africa) have enhanced
access to expertise in the care of children with cancer and contributed
to enhancing pediatric oncology nurses’ knowledge and skills in
Africa15–17. Good communication skills during cancer
care and treatment are an important aspect of nursing children and
adolescents with cancer and their families; the nurses believed this was
also their strong point. For example, Graetz et al. found that “nurses,
rather than psychosocial providers, provide most of the counselling and
are available to clarify information discussed by the physician” (p. 4)
in Uganda 18.
In many settings, nurses take on roles otherwise undertaken by allied
health and social care professionals. The SIOP Global Mapping Programme
survey of childhood cancer services in Africa provided the first ’bird’s
eye view’ of where services exist and pediatric oncology nurses
practice, often in highly challenging circumstances with limited
resources 10. The data provided by nurses themselves
were limited, echoing the general paucity of publications on the
experiences and aspirations of African pediatric oncology nurses. This
is compounded by barriers including limited access to training and
education, lack of professional resources and the hurdles faced through
publication. This is further evidenced by a literature review of
pediatric oncology nursing research in LMICs 2008 – 2018, which found
only six publications from Africa 19.
Results of the global mapping survey demonstrated marked disparities
between countries on the continent, where some have highly specialized
services while others have none 10. For pediatric
oncology nurses to deliver quality nursing care to their patients, they
require systems and programs developed to support this. However, more
than 74.6% of the centres across Africa had only basic services with
very few state-of-the-art services. Sirohi et al. note “Initiatives are
being undertaken in LMICs [low- and middle-income countries] to
deliver optimal cancer care by developing cancer centres, but many of
these initiatives are currently fragmented and uncoordinated. The
challenges of quality, value, affordability, and equality that cancer
centres in HICs [high-income countries] face are multiplied in
LMICs.”20. To improve pediatric cancer outcomes,
there is the need to strengthen training and diagnostic capacities,
develop cancer registries and establish research databases21.
Despite the limited exposure to and participation in research, nurses
participating in the 2019 13th SIOP Africa Congress
research priorities exercise showed a desire to base their nursing
practice on evidence. In order to build that evidence base, nurses
required further training, mentoring and funding to engage in research
and generate appropriate evidence for practice in consideration of
local, resource-limited practice environments. From the identified
thematic areas, the two commonest research areas identified were issues
surrounding professional practice and counselling/psychosocial support
for patients and families. Pediatric oncology nursing practice is
culturally and context-driven and requires locally acquired evidence to
support best practices 25. African nurses have a key
role to play in current and future clinical trials, as evidenced in HICs26, but will require capacity building to be able to
do so 27. Access to research training, availability of
funding and protected time are key steps to guide and motivate clinical
nurses as well as academic nurses to participate in research25.
The SIOP baseline nursing standards recommend that pediatric oncology
nurses should not rotate in other service units 24.
However, from the African mapping survey, only 23% of facilities had
fixed nurse staffing in pediatric oncology units. The rotation of
experienced pediatric oncology nurses away from oncology units means
taking away the expertise, knowledge and experience which is integral to
successful mentorship and quality care. Rotation, therefore, compromises
the quality of care given to pediatric oncology patients and can also be
stressful for the nurses. The nature of cancer and the treatment process
itself often leaves the children quite ill, requiring critical care in
intensive care units (ICU). About 38.0% of the African facilities had
no pediatric ICU available; unfortunately, the few facilities with an
ICU had limited equipment and personnel with pediatric oncology
experience. Only one-fifth of the facilities had a pediatric intensive
care unit with all necessary equipment and personnel with pediatric
intensive care expertise. According to Zinter et al., “up to 38% of
children with cancer require pediatric intensive care unit (PICU)
admission within three years of a cancer diagnosis, [even in HIC,]
with reported PICU mortality of 13-27% far exceeding that of the
general PICU population” (p. 1536) 28. The lack of
ICU services or specialized staff across Africa may explain the causes
of some preventable deaths among children with cancer.
Competencies are fundamental to quality nursing practice and involve the
application of critical thinking, knowledge, technical, and
interpersonal skills demonstrated in the actual performance of skills in
a defined context 29. The need for competent pediatric
oncology nurses is one aspect of care that is universally acknowledged
as essential to all such strategies 24. The
development of training programmes for specialization in pediatric
oncology nursing on the African continent cannot be overemphasized in
order to have competent specialists with better outcomes to care as was
reinforced in the recent Lancet Oncology Commission on cancer in
sub-Saharan Africa 30. Having sufficient theoretical,
and clinical experience and attitude can be significant in improving the
morale of the nurses 31. The 2019 Delphi survey
following the 2019 SIOP Congress in Cairo, Egypt, further underscores
the importance of training as revealed by general consensus on priority
areas of education vital for nurses new to pediatric oncology nursing
that was condensed into a 12-module curriculum framework. This framework
was piloted in Ghana in November 2021 and lead facilitators were trained
in Malawi, in March 2022.
A good rapport between the Nurse and family enhances the Nurse’s ability
to tailor their care to each individual child and helps the Nurse to
know what small things they could do for the child that would make a big
difference 32. During the 2022 SIOP Africa Congress in
Kampala, Uganda, a survey regarding impressions of nurses about
pediatric oncology nursing in Africa demonstrated the holistic nature of
nursing care for children with cancer and high level of commitment and
motivation from nurses to meeting the care needs of their patients.
Nukpezah et al. stated that “…pediatric oncology nurses mustn’t
become task orientated… and lose sight of the holistic and human
aspects of pediatric oncology nursing caring practice” (p. 7)31.
Successful and effective pediatric cancer care and treatment requires
quality care delivered by skilled professional Nurses. Professional
requirements include not only specialization but psychological support
and motivation to uphold an unwavering commitment to meeting the needs
children with cancer and their families, and thereby contributing
positively to better survival as espoused in the WHO CureALLframework of the GICC initiative 33. The need for the
expansion of educational programmes, the development of evidence-based
practices for health promotion and well-being as well as guidance to
enhance and standardize the nursing care of children with cancer have
been recognized as key initiatives for improving pediatric oncology
nursing 34. The requirement for specialized training
with certification was echoed again by SIOP Africa nurses to improve the
numbers of available qualified and competent pediatric oncology nurses.
However, the high demands of pediatric oncology nursing in
resource-limited settings are not appropriately recognized and
remunerated. This can be improved by encouraging membership to the
relevant professional bodies such as SIOP that engender growth and
development in clinical, educational, leadership and research areas that
have already been alluded to as requiring investment and growth.
This paper has presented published and unpublished evidence from data
gathered over the last five years through a range of activities led by
African pediatric oncology nurses themselves. The work provides a
baseline of the current situation, articulates professional priorities,
and sets goals for moving forward to strengthen pediatric oncology
nursing development and improve the care of children/adolescents with
cancer and their families in Africa.