What matters to you? Engaging with children in the James Lind Alliance Children's Cancer Priority Setting Partnership.

BACKGROUND: Previous priority setting exercises have sought to involve children, but in the final reporting, it is evident that few children had been engaged through the process. A primary aim in the Children's Cancer Priority Setting Partnership was to find out from children what they want research to focus on. We report on our experience to inform methods of engagement with children in future James Lind Alliance Priority Setting Partnerships and similar exercises. METHODS: We followed the James Lind Alliance process, collecting and shortlisting questions via online surveys with adult survivors of childhood cancer, carers, and professionals, and holding a final workshop. Alongside this, a parallel process to collect and prioritise questions from children was undertaken. We created animations for parents/carers to explain the project and surveys to children, gathered questions via online surveys and held a workshop with children to identify their priorities. RESULTS: Sixty-one children and young people with cancer and 10 siblings, aged 3-21 years, submitted 252 potential questions/topics via the surveys. Submissions were refined into 24 summary questions. These questions were discussed at a workshop with eight children; they also added more questions on topics of importance to them. Workshop participants prioritised the Top 5 questions; top priority was, 'How can we make being in hospital a better experience for children and young people? (like having better food, internet, toys, and open visiting so other family members can be more involved in the child's care)'. The Top 5 also included cancer prevention, treatments closer to home, early diagnosis, and emotional support. These questions were taken to the final workshop at which the Top 10 priorities were decided, all five children's priorities were reflected in the final Top 10. CONCLUSIONS: We have demonstrated that it is possible to successfully involve children directly in setting priorities for future research. Future priority setting exercises on topics relevant to children, should seek to include their views. The Children's Cancer Top 10 priorities reflect the voices of children and should inform the funding of future research.

Priority Setting Partnerships find out what areas of research are important to patients, families, and the professionals who care for them. Few Priority Setting Partnerships have involved children, so what matters to them may not have been well-represented. The Children's Cancer Priority Setting Partnership aimed to find out directly from children what research we should do. We collected questions/topics for research from children using online surveys. We made animations to explain the project and surveys to children. Two-hundred and fifty-two questions were sent in by 61 children and young people with cancer and 10 siblings. We grouped similar questions together into 24 summary questions. Summary questions were discussed at a workshop with eight children. Workshop participants added more questions on topics that mattered to them, and decided their Top 5 questions. The top question was, 'How can we make being in hospital a better experience for children and young people? (like having better food, internet, toys, and open visiting so other family members can be more involved in the child's care)'. The Top 5 questions included: preventing cancer, having treatments nearer home, early diagnosis, and emotional support. These questions were taken to the final project workshop, this was with adults, including childhood cancer survivors, where the Top 10 priorities were decided. All five children's priorities were included in the Top 10. We have shown it is possible to successfully involve children in setting research priorities. Future priority setting exercises on topics that affect children should actively seek and include their views.

Research priorities for children's cancer: a James Lind Alliance Priority Setting Partnership in the UK.

OBJECTIVES: To engage children who have experienced cancer, childhood cancer survivors, their families and professionals to systematically identify and prioritise research questions about childhood cancer to inform the future research agenda. DESIGN: James Lind Alliance Priority Setting Partnership. SETTING: UK health service and community. METHODS: A steering group oversaw the initiative. Potential research questions were collected in an online survey, then checked to ensure they were unanswered. Shortlisting via a second online survey identified the highest priority questions. A parallel process with children was undertaken. A final consensus workshop was held to determine the Top 10 priorities. PARTICIPANTS: Children and survivors of childhood cancer, diagnosed before age 16, their families, friends and professionals who work with this population. RESULTS: Four hundred and eighty-eight people submitted 1299 potential questions. These were refined into 108 unique questions; 4 were already answered and 3 were under active study, therefore, removed. Three hundred and twenty-seven respondents completed the shortlisting survey. Seventy-one children submitted questions in the children's surveys, eight children attended a workshop to prioritise these questions. The Top 5 questions from children were taken to the final workshop where 23 questions in total were discussed by 25 participants (young adults, carers and professionals). The top priority was 'can we find effective and kinder (less burdensome, more tolerable, with fewer short and long-term effects) treatments for children with cancer, including relapsed cancer?' CONCLUSIONS: We have identified research priorities for children's cancer from the perspectives of children, survivors, their families and the professionals who care for them. Questions reflect the breadth of the cancer experience, including diagnosis, relapse, hospital experience, support during/after treatment and the long-term impact of cancer. These should inform funding of future research as they are the questions that matter most to the people who could benefit from research.

Current status and priorities of paediatric oncology nursing in Africa: a synthesis of perspectives from SIOP Africa nurses.

Introduction: As African countries adopt the global goal of improving childhood cancer survival to 60% by 2030, intentional actions are required to improve nursing. This report aims to describe the current status of paediatric oncology nursing in Africa. Methods: We report on nursing-related aspects of a survey to map paediatric oncology services in Africa (2018-2019), document perceived nursing strengths and weaknesses (2017) and share nurses' research priorities (2019). Additionally, we report on a survey to identify topics for a foundation course (2019) and the expressed perspective of African nurses about the status of paediatric oncology nursing across the continent (2022). Results: Only 21% of respondents in the African mapping survey reported having nurses who care for children with cancer at least 75% of the time. Many centres do not have allied health workers like dieticians and play therapists, thus contributing to the nursing burden of care. The main strength of African paediatric oncology nurses was the humanisation of care, while the major weakness was the lack of training follow-up. The top research priorities focused on professional practice and psychosocial support. The Delphi survey identified 57 topic areas grouped into a 12-module curriculum for nurses new to paediatric oncology. The nurses affirmed their dedication to providing compassionate care, however, noted their vulnerability to harm and called for better specialisation, recognition and remuneration. Conclusion: This paper amplifies the voice of African paediatric oncology nurses. It illuminates the room for improvement and provides a reference point for future comparison.

Disparities in the delivery of pediatric oncology nursing care by country income classification: International survey results.

BACKGROUND: In 2014, a task force of the International Society of Paediatric Oncology (SIOP) Paediatric Oncology in Developing Countries Nursing Workgroup published six baseline standards to provide a framework for pediatric oncology nursing care in low- and lower-middle income countries (L/LMIC). We conducted an international survey in 2016-2017 to examine the association between country income level and nurses' resporting of conformity to the standards at their respective institutions. PROCEDURE: Data from a cross-sectional web-based survey completed by nurses representing 54 countries were analyzed (N = 101). Responses were clustered by relevance to each standard and compared according to the 2017 World Bank-defined country income classification (CIC) of hospitals. RESULTS: CIC and nurse-to-patient ratios in inpatient wards were strongly associated (P < 0.0001). Nurses in L/LMIC prepared chemotherapy more often (P < 0.0001) yet were less likely to have access to personal protective equipment such as nitrile gloves (P = 0.0007) and fluid-resistant gowns (P = 0.011) than nurses in high-resource settings. Nurses in L/LMIC were excluded more often from physician/caregiver meetings to discuss treatment options (P = 0.04) and at the time of diagnosis (P = 0.002). Key educational topics were missing from nursing orientation programs across all CICs. An association between CIC and the availability of written policies (P = 0.009) was found. CONCLUSIONS: CIC and the ability to conform to pediatric oncology baseline nursing standards were significantly associated in numerous elements of the baseline standards, a likely contributor to suboptimal patient outcomes in L/LMIC. To achieve the goal of high-quality cancer care for children worldwide, nursing disparities must be addressed.

Educational needs and strategies of pediatric oncology nurses in low- and middle-income countries. An International Society of Pediatric Oncology- Pediatric Oncology in Developing Countries Nursing Working Group Initiative.

BACKGROUND: There is no existing pediatric oncology nursing curriculum written specifically for low- and middle-income countries (LMICs), where 80% of children with cancer reside. In 2012, the International Society of Pediatric Oncology Nursing Working Group sought to address this gap with a 3-phase study. OBJECTIVE: Phase 1: identify educational priorities of LMIC nurses providing oncology care. Phase 2: solicit educational strategies from expert pediatric oncology nurses. Phase 3: develop a culturally adaptable modular curriculum framework based on LMIC nurses' priorities. METHODS: A cross-sectional sample of LMIC nurses were surveyed (including Africa, Latin America, Asia). Next, 2 rounds of a Delphi survey were sent to expert pediatric oncology nurses from high-income countries with experience working in LMICs. A 2-day workshop was conducted to develop the framework. RESULTS: Low- and middle-income country nurses' survey responses indicated a similar need for specialty training (eg, chemotherapy and psychosocial support). Delphi survey participants agreed on educational strategies (eg, group discussions and peer teaching). Finally, 5 LMIC nurses committed to creating curriculum modules. CONCLUSIONS: There is an urgent need for a curriculum framework created and field tested in LMICs. The International Society of Pediatric Oncology 3-phase project was a successful strategy for initiating this ongoing process. IMPLICATIONS FOR PRACTICE: Translating or modifying existing oncology nursing curricula from high-income countries for use in LMICs is no longer adequate. Engaging LMIC nurses who care for children and adolescents with cancer in curriculum development, recognizing local cultures, traditions, and priorities and harnessing the LMIC nurses' knowledge, experience, and resources are the logical solution for a relevant curriculum.

The role of SIOP as a platform for communication in the global response to childhood cancer.

Since the year 2000, there has been a 35% annual decrease in mortality among children under the age of five worldwide. The decrease is mainly attributed to the decrease in childhood epidemic infections, for example, due to vaccination programs. In the near future, this decrease will draw attention to paediatric non-communicable diseases (NCDs), and cancer is one of the most common. Access to care for children with cancer and survival rates have improved dramatically in high-income countries. However, it is important that a global perspective addresses problems in developing countries in particular. To meet this challenge, it is critical that emphasis is placed on demands such as access to care and drugs that are known to be effective, and which can be safely administered in resource-limited settings. Additionally, cancer registries and improved health care structures that include care for children with cancer, are paramount for further progress to increase awareness and the survival of children with cancer. The purpose of this paper is to describe current worldwide interventions to improve childhood cancer from the perspective of the International Society of Paediatric Oncology (SIOP). This global perspective will serve as an introduction to a series of papers from six SIOP continental branches, which will highlight the specific and/or common issues related to children with cancer worldwide. To strengthen the communication among and synergistic effects of various paediatric cancer stakeholders, SIOP could serve as a global platform for a proposed Global Paediatric Cancer Network through the interaction of its continental branches and partner collaborations.

Improving outcomes: update on progress.

In 2005 the National Institute for Health and Clinical Excellence (NICE) published guidance on improving outcomes in children and young people with cancer. The guidance applies to England and Wales only, but has influenced service development in the four countries of the United Kingdom (UK) and the Republic of Ireland. Progress in implementation of the guidance has been slower than anticipated, mainly because of its complexity and scope, particularly in relation to shared care and services for teenagers and young adults. Supplementary guidance has been developed so that commissioners and providers can work towards meeting the required quality standards. The lessons learned in improving cancer services could inform developments in other specialist services for children and young people.

The role of the specialist nurse in paediatric oncology in the United Kingdom.

National guidance in the United Kingdom on the provision of services for children and young people with cancer and their families has consistently emphasised the need for specialist nursing as central to the delivery of safe and effective care. The temptation when examining the role of the specialist nurse is to look at those posts that carry a recognised 'specialist' label. It is equally important, however, to look at the development of nursing practice across the speciality and at how this can be both supported and recognised. Nurses with specialist knowledge, skills and expertise in paediatric oncology are needed in positions where they are able to develop nursing practice, direct service development, lead nursing research, and guide education and training. Effective clinical leadership is essential at the point at which nursing care is delivered whether that is at the hospital bedside, in the clinic and day care unit, or in the family home.