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.