ABSTRACT

Storytelling can enhance stakeholder engagement and support the implementation of the World Health Organization and Pan American Health Organization’s (PAHO) Global Initiative for Childhood Cancer, which aims to improve care globally for children with cancer. The Initiative aligns with the United Nations Sustainable Development Goals, addressing health, education, inequalities and international collaboration. This report describes the design and implementation of a workshop that used storytelling through film to encourage stakeholders in national cancer control plans to engage with the Initiative in its focal countries in Central America, the Dominican Republic and Haiti. A six-step process was used to develop the virtual workshop hosted by PAHO: (i) define the audience; (ii) define the goals of storytelling; (iii) build an appropriate storyline, including choosing a platform and content, and addressing group dynamics and the length of the film; (iv) guide the workshop’s design and implementation with current theoretical frameworks, including the Socioecological Model of Health and the Theory of Change; (v) design interactive group exercises; and (vi) disseminate workshop results. The skills-building component of the day-long workshop included 80 representatives from eight countries in the Region of the Americas, with participants representing pediatric oncology, hospital administration, ministries of health, nonprofit foundations, the scientific community and public health organizations. Outputs from the workshop included (i) a summary report, (ii) an empathy word cloud with live reactions from participants, (iii) qualitative responses (i.e. quotes from participants), (iv) stakeholders’ analyses and (v) a prioritization matrix for country-level strategic activities that could be undertaken to strengthen health systems when caring for children with cancer. The workshop used storytelling through film to try to reduce health inequalities and have a regional impact. Combining art, public health and medicine, the workshop created positive change by sharing real-life experiences. Commitment was fostered among stakeholders through their engagement with the workshop, which aimed to increase their awareness of the need and advocacy to improve health systems and enhance access to health care for this vulnerable population.

Keywords
Adolescent health; child health; health communication; neoplasms; disease prevention; health systems

RESUMEN

La narración de historias puede mejorar la participación de las partes interesadas y brindar apoyo para la aplicación de la Iniciativa Mundial contra el Cáncer Infantil de la Organización Mundial de la Salud y la Organización Panamericana de la Salud (OPS), dirigida a mejorar la atención a los pacientes pediátricos con cáncer en todo el mundo. La Iniciativa se enmarca en el contexto de los Objetivos de Desarrollo Sostenible de las Naciones Unidas, que abordan la salud, la educación, las desigualdades y la colaboración internacional. En este informe se describe el diseño y la realización de un taller en el que se utilizó la narración de historias mediante películas para animar a las partes interesadas de los planes nacionales de control del cáncer a colaborar con la iniciativa en los países del proyecto en Centroamérica, Haití y República Dominicana. Para preparar el taller virtual organizado por la OPS, se utilizó un proceso de seis pasos: i) definir el público destinatario; ii) definir los objetivos de la narración; iii) confeccionar una estructura argumental adecuada, incluida la elección del tipo de plataforma y el contenido, y tener en cuenta tanto las dinámicas de grupo como la duración de la película; iv) basar el diseño y la realización del taller en marcos teóricos actuales, incluidos el modelo socioecológico de la salud y la teoría del cambio; v) diseñar ejercicios grupales interactivos; y vi) difundir los resultados del taller. En el componente de adquisición de competencias del taller, de un día de duración, participaron 80 representantes de ocho países de la Región de las Américas, pertenecientes a los ámbitos de la oncología pediátrica, la gestión hospitalaria, los ministerios de salud, fundaciones sin ánimo de lucro, la comunidad científica y organizaciones de salud pública. Los resultados del taller incluyeron i) un resumen del informe, ii) una nube de palabras relacionadas con la empatía que recogía las reacciones en tiempo real de las personas participantes, iii) respuestas cualitativas (es decir, citas de lo expresado por las personas participantes), iv) análisis de las partes interesadas y v) una matriz de priorización de las actividades estratégicas a nivel de país que se podrían llevar a cabo para fortalecer los sistemas de salud a la hora de prestar atención de salud a los pacientes pediátricos con cáncer. En el taller se recurrió a la narración de historias en forma de película para tratar de reducir las inequidades en materia de salud y lograr un impacto a nivel regional. La combinación de arte, salud pública y medicina propició la generación de cambios favorables mediante el intercambio de experiencias de la vida real. Se fomentó el compromiso de las partes interesadas a través de su participación en el taller, lo cual tenía como objetivo aumentar su concientización sobre la importancia de la promoción y la necesidad de mejorar tanto los sistemas de salud como el acceso a la atención de salud para esta población vulnerable.

Palabras clave
Salud del adolescente; salud infantil; comunicación en salud; neoplasias; prevención de enfermedades; sistemas de salud

RESUMO

A narração de histórias pode aumentar o envolvimento das partes interessadas e apoiar a implementação da Iniciativa Global para o Câncer Infantil da Organização Mundial da Saúde e da Organização Pan-Americana da Saúde (OPAS), que visa a melhorar o atendimento a crianças com câncer em âmbito mundial. A Iniciativa está alinhada com os Objetivos de Desenvolvimento Sustentável das Nações Unidas, abordando saúde, educação, desigualdades e colaboração internacional. Este relatório descreve a elaboração e implementação de uma oficina que usou histórias narradas por meio de filmes para incentivar as partes interessadas nos planos nacionais de controle do câncer a se envolverem na Iniciativa em países focais na América Central, além da República Dominicana e do Haiti. Um processo em seis etapas foi usado para desenvolver a oficina virtual organizada pela OPAS: a) definir o público; b) definir os objetivos da narrativa; c) construir um enredo apropriado, com consideração para a escolha de plataforma e do conteúdo, a dinâmica do grupo e a duração do filme; d) orientar a elaboração e implementação da oficina no âmbito de marcos teóricos atuais, como o Modelo Socioecológico de Saúde e a Teoria da Mudança; e) preparar exercícios interativos em grupo; e f) disseminar os resultados da oficina. O componente de desenvolvimento de habilidades da oficina de um dia incluiu 80 representantes de oito países da Região das Américas, com participantes representando oncologia pediátrica, administração hospitalar, ministérios da saúde, fundações sem fins lucrativos, a comunidade científica e organizações de saúde pública. Os resultados da oficina incluíram: a) um relatório resumido; b) uma nuvem de palavras de empatia com reações ao vivo dos participantes; c) respostas qualitativas (ou seja, falas dos participantes); d) análises das partes interessadas; e e) uma matriz de priorização para atividades estratégicas nacionais que poderiam ser realizadas para fortalecer os sistemas de saúde no cuidado de crianças com câncer. A oficina usou histórias narradas por meio de filmes para tentar reduzir as desigualdades de saúde e alcançar um impacto regional. Combinando arte, saúde pública e medicina, a oficina criou uma mudança positiva por meio do compartilhamento de experiências da vida real. A participação na oficina, cujo objetivo era aumentar a conscientização sobre a necessidade de pleitear melhorias nos sistemas de saúde e no acesso à atenção à saúde para essa população vulnerável, fomentou o compromisso entre as partes interessadas.

Palavras-chave
Saúde do adolescente; saúde da criança; comunicação em saúde; neoplasias; prevenção de doenças; sistemas de saúde

Storytelling has frequently highlighted health disparities and mobilized awareness for critical global public health issues. This study explores how compelling storytelling can be a valuable tool for encouraging stakeholder engagement and advocacy (¹1. Benham Asl S, Gill C, Umstead K, Mahtani R, Tully K. A collaborative approach to digital storytelling in healthcare settings [Internet]. In: Bohemia E, Buck L, Grierson H, editors. DS 117: Proceedings of the 24th International Conference on Engineering and Product Design Education. Glasgow: Design Society; 2022 [cited 2022 September 8]. Available from: https://www.designsociety.org/publication/45888/A+COLLABORATIVE+APPROACH+TO+DIGITAL+STORYTELLING+IN+HEALTHCARE+SETTINGS
https://www.designsociety.org/publicatio... ) to strengthen the implementation of the World Health Organization (WHO) and Pan American Health Organization’s (PAHO) Global Initiative for Childhood Cancer, which aims to improve cancer care for children and adolescents worldwide, regardless of their country, race or gender, and is closely aligned with the United Nations (UN) Sustainable Development Goals (SDGs) for the year 2030, particularly in terms of health, education, the reduction of inequalities and encouragement of international collaboration.

Stakeholder engagement is meaningfully involving persons affected by research findings or programs in any key process (²2. Joosten YA, Israel TL, Williams NA, Boone LR, Schlundt DG, Mouton CP, et al. Community engagement studios: a structured approach to obtaining meaningful input from stakeholders to inform research. Acad Med. 2015;90:1646-50.). It is recognized as pivotal to improve how public health interventions are prioritized, translated and used in real-life settings (³3. Forsythe LP, Ellis LE, Edmundson L, Sabharwal R, Rein A, Konopka K, Frank L. Patient and stakeholder engagement in the PCORI pilot projects: description and lessons learned. J Gen Intern Med. 2016;31:13-21.).

In health care, storytelling design incorporates patients’ and families’ experiences to promote and develop interventions. True-to-life films empathically observe and honor multiple perspectives, and allow viewers to evaluate the interactions of leading characters over time. Health care films require intentional design to maintain confidentiality when using video-based data (⁴4. Asan O, Montague E. Using video-based observation research methods in primary care health encounters to evaluate complex interactions. Inform Prim Care. 2014;21:161-70.).

Using film to tell stories is an effective way to directly share interactions and emotions, making it easier to disseminate content to various stakeholders, such as clinicians, members of civil society organizations and policy-makers. Story-based films aim to authentically convey practical experiences to a wider audience, serving as an advocacy and engagement tool for health care teams (⁵5. Lipsey AF, Waterman AD, Wood EH, Balliet W. Evaluation of first-person storytelling on changing health-related attitudes, knowledge, behaviors, and outcomes: a scoping review. Pat Educ Couns. 2020;103:1922-34.).

This paper outlines the storytelling strategy used to design and implement a PAHO workshop using the film titled, How I live. The workshop aimed to engage stakeholders in implementing national cancer control plans for Central America, the Dominican Republic and Haiti to promote long-term health system strengthening to improve care for children with cancer.

BACKGROUND

The gap in childhood cancer care

Latin America faces severe burdens from childhood cancer morbidity and mortality. Access to care for childhood cancer is inconsistent and limited, with significant differences in outcomes within and between countries because of inequities in access to diagnosis and treatment. Latin America needs more cohesive policies and practices to strengthen the control of childhood cancer, which is integral to enhancing child health and fortifying health systems. Childhood cancer receives limited attention from policy-makers despite its importance in reducing childhood mortality and improving health over the life course (⁶6. Gavidia R, Fuentes SL, Vasquez R, Bonilla M, Ethier MC, Diorio C, et al. Low socioeconomic status is associated with prolonged times to assessment and treatment, sepsis and infectious death in pediatric fever in El Salvador. PLoS One. 2012;7:e43639.

7. Rodriguez-Galindo C, Friedrich P, Morrissey L, Frazier L. Global challenges in pediatric oncology. Curr Opin Pediatr. 2013;25:3-15.-⁸8. Lam CG, Howard SC, Bouffet E, Pritchard-Jones K. Science and health for all children with cancer. Science. 2019;363:1182-6.).

WHO, St. Jude Children’s Research Hospital and global partners launched the WHO Global Initiative for Childhood Cancer at the September 2018 UN General Assembly. This Initiative aims to achieve a minimum 60% global survival for children with cancer while reducing suffering for each child (⁹9. World Health Organization. CureAll framework: WHO Global Initiative for Childhood Cancer: increasing access, advancing quality, saving lives. Geneva: World Health Organization; 2021. https://apps.who.int/iris/handle/10665/347370
https://apps.who.int/iris/handle/10665/3... ).

International collaboration to accelerate implementation of the Initiative

Strengthening the health system to improve cancer care for children and adolescents is a priority of the SDGs. Thus, convening a regional task force with national working groups to develop and oversee national childhood cancer strategies in Latin America is a public health priority. PAHO and WHO, along with international institutions, St. Jude Children’s Research Hospital, the Harvard Humanitarian Initiative and Persistent Productions, a film production company specializing in storytelling for social impact, designed a strategy to promote regional dialogue through workshops. The aim was to advocate for children and adolescents with cancer by helping low- and middle-income countries (LMICs) build their capacity for continual care.

Strategy development

A six-step process was developed to strategize and implement the PAHO workshop (¹⁰10. Pan American Health Organization. Workshop “How I live” –13 August 2021 [Internet]. Washinton (DC): Pan American Health Organization; 2021 [cited 2022 August 13]. Available from: https://www.paho.org/en/topics/childhood-and-adolescence-cancer/workshop-how-i-live-13-august-2021
https://www.paho.org/en/topics/childhood... ), which was delivered virtually owing to constraints of the COVID-19 pandemic. The steps included (i) defining the audience, by country and type of institutions, and by the positions and backgrounds of health care and policy-maker professionals; (ii) defining the goals of storytelling, which are to emotionally engage participants and provide them with a compelling action toolkit; (iii) building an appropriate storyline, in terms of platform, content, group dynamics and length of the film; (iv) guiding the workshop’s design and implementation with current theoretical frameworks, including the Theory of Change, Socioecological Model of Health, the CureAll framework, WHO’s Global Initiative for Childhood Cancer, the SDGs and WHO’s Health Systems Building Blocks; (v) designing interactive group exercises; and (vi) disseminating the results of the workshop.

Defining the audience.

Under the leadership of its 52 member countries and territories, PAHO sets regional health priorities and mobilizes actions to address health problems that respect no borders and, in many cases, jeopardize health systems’ sustainability.

The intended audience for the How I live film and virtual workshop comprises ministries of health, pediatric oncology specialists, nonprofit organizations (e.g. childhood cancer foundations), hospital directors and PAHO consultants. Dissemination of the event was carried out in close collaboration with the PAHO country officers. Table 1 summarizes the affiliations and numbers of participants in session two.

Define storytelling and its goal.

In the context of health information, storytelling can humanize complex medical concepts and processes, making them more relatable and understandable. Additionally, stories can evoke emotions that may contribute to persuasion, a crucial aspect in interventions seeking to change health behavior. The team of organizers was guided by visual media’s increasing prevalence and influence in today’s digital age. As a visual storytelling approach, a film can be far-reaching, and it allows for the inclusion of elements such as body language, tone of voice and visual cues, which can greatly enhance the delivery and reception of the intended health message (¹1. Benham Asl S, Gill C, Umstead K, Mahtani R, Tully K. A collaborative approach to digital storytelling in healthcare settings [Internet]. In: Bohemia E, Buck L, Grierson H, editors. DS 117: Proceedings of the 24th International Conference on Engineering and Product Design Education. Glasgow: Design Society; 2022 [cited 2022 September 8]. Available from: https://www.designsociety.org/publication/45888/A+COLLABORATIVE+APPROACH+TO+DIGITAL+STORYTELLING+IN+HEALTHCARE+SETTINGS
https://www.designsociety.org/publicatio... ).

Persistent Productions’ film How I live was selected for the workshop, given the increasing attention to storytelling as a potentially adaptable stakeholder engagement approach that is especially relevant to populations with health disparities, such as in Latin America and the Caribbean, for whom there is a strong cultural connection to storytelling as a form of social discourse (¹¹11. Ballard AM, Davis A, Hoffner CA. The impact of health narratives on persuasion in African American women: a systematic review and meta-analysis. Health Commun. 2021;36:560-71.). Additionally, two of the four children in the film were from countries taking part in the regional workshop in Central America. The film debuted during the launch of the Global Initiative for Childhood Cancer on September 27, 2018, at the UN General Assembly.

The production company spent 4 years filming interviews with and footage from health care teams familiar with the challenges faced by families of children with cancer. These health professionals work to provide quality care under adverse conditions. The stories from the front lines of global pediatric oncology in four LMICs – Egypt, El Salvador, Guatemala and Myanmar – show the power of parents’ love, children’s courage and what is possible when a community is dedicated to treating and someday curing childhood cancer (¹²12. www.howilivewithcancer.com[Internet]. Rockport (MA): How I live; 2023 [cited 2023 May 24]. Available from: https://www.howilivewithcancer.com/
www.howilivewithcancer.com... ).

The organizers of the virtual workshop chose to use the film to emotionally connect and engage with important stakeholders in childhood cancer care and guide them towards implementing national pediatric cancer control plans as part of the WHO Global Initiative for Childhood Cancer and the CureAll framework. The goal of the workshop organizers was to help stakeholders relate to the complex issues facing patients, families and health care providers, from diagnosis through treatment, through the film. The film documents the difficulties not only of cancer treatment but also the physical and geographical obstacles to accessing care and how these can be the most daunting to overcome.

Building an appropriate storyline: platform, content, group dynamics and film length.

The planning process started in 2021 during the ongoing public health restrictions associated with the COVID-19 pandemic, which forced the workshop into a virtual format. Twice-weekly preworkshop planning meetings were held for 4 months before the event, attended by the organizers and facilitators. Trained facilitators and experts in childhood cancer, global health, public health and storytelling led the planning workshop. Table 2 details the format, structure, and scope of the actual virtual workshop and its two-session 5-hour program offered over Zoom, an online video conferencing platform.

Using the theoretical frameworks.

Two planning sessions were designed to address the needs of the target audience, how to share knowledge about disparities in global childhood cancer between high-income countries (HICs) and LMICs and how to identify participants’ intention to take regional and national action to improve care for children with cancer.

Designing interactive group exercises.

A preworkshop meeting, held 1 month before the workshop, was attended by the organizers, facilitators and members of each country’s Childhood Cancer Committee. This preworkshop meeting allowed organizers to introduce each Committee member to two preworkshop tasks – that is, Committee members were asked to collect and complete all information required to help the organizers prepare material for the workshop (Figure 1). In preparation for the virtual regional workshop, participants were assigned two preworkshop tasks designed to prime engagement and facilitate meaningful discourse during the event. Task 1, to be undertaken 1 month prior to the workshop, involved viewing the 90-minute version of the How I live film and then completing a survey aimed at gauging stakeholders’ perceptions and impressions after watching the documentary. The objective was to provide a context for the discussions of challenges associated with caring for children with cancer, thereby eliciting participants’ perspectives before the virtual regional workshop. Task 2, to be completed 15 days before the workshop, required participants to prioritize strategic activities within the framework of WHO’s six Health Systems Building Blocks. The prioritization was to be based on two criteria: value and political will. This task was instrumental in shaping the focus of the workshop by identifying high-impact, feasible activities that could be readily integrated into health care policy and practice. Both tasks served as scaffolding activities that informed and enriched the subsequent workshop discussions and outcomes.

Implementation

The workshop was presented in two sessions.

Session one.

The first session was the introductory workshop, facilitated by members of the Harvard Humanitarian Initiative, the producer and director of the film from Persistent Productions, a member of PAHO’s Noncommunicable Diseases Cancer Unit and a member of the St. Jude Global Pediatric Medicine Team. This section used a standard 15-minute clip from How I live as a call to action, with updated information added in the 3 years since the 2018 UN General Assembly, presented preliminary findings from the implementation plan for the Global Initiative for Childhood Cancer and explored participants’ reaction to the film clip.

As part of the first session, to assess participants’ experiences after viewing the 15-minute film clip, the organizers used a repeated-measures design, by administering a brief online survey via Microsoft Forms. The collected data were then used to generate a real-time word cloud, providing immediate visual insight into participants’ reactions (information on the specific questions is available to interested readers through the corresponding author). We also discussed participants’ responses to the preworkshop survey, and the challenges faced by children with cancer, their family members and health care providers throughout the different phases of the treatment process, including diagnosis, treatment and survivorship. In a guided brainstorming activity based on the Theory of Change (¹³13. United Nations Children’s Fund (UNICEF). Theory of change paper, UNICEF strategic plan, 2018–2021: realizing the rights of every child, especially the most disadvantaged. New York: UNICEF; 2017 [cited 2023 May 24]. Available from: https://www.unicef.org/executiveboard/media/1471/file/2017-EB11-Theory_of_Change-EN-2017.07.19.pdf
https://www.unicef.org/executiveboard/me... ), participants identified strategies and outputs contributing to improved outcomes to identify opportunities for making sustainable improvements to global disparities in childhood cancer care. Specifically, during session one we encouraged participants to use the SDGs as a framework to analyze key themes illustrated in the film. Overviews of the Global Initiative for Childhood Cancer and the CureAll Framework were also presented, and the role of the St. Jude Global Pediatric Medicine Team in developing the national pediatric cancer plan in Central America, the Dominican Republic and Haiti, as part of the WHO/PAHO Initiative, was also discussed (¹⁴14. Lam CG, Vasquez L, Loggetto P, Fuentes-Alabi S, Gonzalez Ruiz A, Benitez Majano S, et al. Partnering to implement the Global Initiative for Childhood Cancer in the Americas: prioritizing systems strengthening. Rev Panam Salud Publica. 2023;47:e41.).

Session two.

During this session, the same group of experts facilitated skills-building exercises. Participants were divided into eight breakout groups organized by country. The session focused on two main exercises: (i) prioritizing strategic activities across the health system according to their value and the political will for implementation and (ii) developing a stakeholder analysis.

Session two aimed to equip participants with two specific skills: first, learning how to use the St. Jude Children’s Research Hospital Health System Unit’s Childhood Cancer Control Country Collaboration tool (C5) to identify progress, priorities, challenges, gaps and potential stakeholders within the continuum of the WHO/PAHO Initiative. This tool is based on WHO’s six Health Systems Building Blocks framework, adapted for children with cancer (¹⁵15. Mounier-Jack S, Griffiths UK, Closser S, Burchett H, Marchal B. Measuring the health systems impact of disease control programs: a critical reflection on the WHO building blocks framework. BMC Public Health. 2014;14:278.). The second aim was to teach participants how to use storytelling skills to collaborate as advocates for care for children with cancer and for members of the health care team, thus encouraging stakeholders to hold meetings to implement their prioritized strategic actions.

Data collection and analysis

The preworkshop survey included six open-ended questions; each participant responded with short answers. The goals of this survey were to characterize participants’ reactions and collect content for the workshop process.

The skills-building exercises were evaluated using qualitative methods, with field notes taken during the breakout sessions. Each breakout group had two facilitators. Facilitators included eight notetakers from the PAHO team, two members of the Executive Secretariat of the Council of Ministers of Health of Central America and the Dominican Republic, one representative from the Harvard Humanitarian Initiative and five from St. Jude.

Descriptive analysis was used to examine participants’ characteristics and responses, and response rates to the surveys administered before the workshop were also calculated. Descriptive analyses used the word cloud for an empathy mapping exercise that elucidated participants’ perceptions regarding the multifaceted challenges faced by patients and their caregivers in accessing care for childhood cancer, as well as the challenges faced by physicians. Utilizing a range of metrics, including frequency distributions and thematic categorizations, the empathy map served as a visualization of qualitative data that encapsulated sentiments and barriers, thereby offering a nuanced understanding of stakeholders’ experiences. In a complementary approach, the workshop also incorporated the C5 Tool section matrix of value and political will (designated as c5) (see additional details in the Results section). This matrix uses a two-dimensional framework, categorizing strategic initiatives on axes of value (i.e. impact on health care outcomes) and political will (i.e. feasibility and stakeholder support). The c5 matrix effectively prioritizes activities by generating a quantifiable representation of where interventions stand in terms of potential impact and ease of implementation, thereby informing actionable steps for improving access to childhood cancer care. Both analytical tools collectively provided a comprehensive, data-informed view that is pivotal for designing targeted interventions.

RESULTS

The 5-hour workshop was held in two sessions on August 13, 2021, virtually over the Zoom platform, with translation from Spanish to English and French.

Outputs of the workshop included: (i) a summary report, (ii) an empathy word cloud with live reactions from the participants, (iii) qualitative responses (i.e. quotes from participants), (iv) a prioritization matrix for strategic activities at the country level and (v) a stakeholder analysis.

Responses to session one

The first session lasted for 1 hour and 30 minutes and was open to the public. A total of 150 participants from 25 different countries took part. Altogether, 131 responded to the empathy mapping survey statement in which they were instructed to, “Please type 1–3 words representing how you felt after watching the film”; the response rate was 87% (130/150). The word cloud developed from participants’ reaction showed that their most common feelings were “engaged” (comprometida), “emotional” (emocionada), “shocked” (impresionada) and “hopeful” (esperanzada) (Figure 2).

Only 81 participants (54% response rate) responded to the open-ended qualitative questions in workshop session one. When asked about the difference between learning about global childhood cancer from a film compared with in a scientific journal or newsletter, all respondents emphasized the impact of real people’s stories on their understanding of the global burden of childhood cancer. One representative quote expresses this sentiment:

When asked about the barriers and facilitators to accessing care for childhood cancer depicted in the film and whether they reflect a participant’s reality in their own country, 56% (45/80) recognized geographical distance to specialized health care centers and the socioeconomic status of families as barriers, 33% (50/150) mentioned a lack of access to essential medicines for childhood cancer and diagnostic technology, and 22% (33/150) highlighted the absence of a workforce trained to deliver care for childhood cancer.

When asked whether the facilitating factors identified in the film related to their own country’s reality, 44% (66/150) of respondents described the presence of nonprofit civil society organizations (i.e. foundations) involved in the direct care of children and adolescents with cancer, 33% (50/150) identified government-provided universal coverage packages for childhood cancer and 23% (35/150) identified the presence of health systems networks and community engagement.

Workshop session one ended with participants commenting in the Zoom chat about their favorable experiences while watching the film, expressing that they had learned storytelling could be a tool to communicate with and help others to understand their scope of work. Several participants wrote about their plans for using storytelling as a tool to engage stakeholders and as a method for disseminating their research to target communities.

Responses to session two

A total of 80 people participated in the skills-building exercises, which is an attendance rate of 53% (80/150). Altogether 31% (25) of participants represented ministries of health, 30% (24) represented public health organizations, 14% (¹¹11. Ballard AM, Davis A, Hoffner CA. The impact of health narratives on persuasion in African American women: a systematic review and meta-analysis. Health Commun. 2021;36:560-71.) represented pediatric oncology hospital administrations, 14% (¹¹11. Ballard AM, Davis A, Hoffner CA. The impact of health narratives on persuasion in African American women: a systematic review and meta-analysis. Health Commun. 2021;36:560-71.) represented nonprofit foundations and 11% (⁹9. World Health Organization. CureAll framework: WHO Global Initiative for Childhood Cancer: increasing access, advancing quality, saving lives. Geneva: World Health Organization; 2021. https://apps.who.int/iris/handle/10665/347370
https://apps.who.int/iris/handle/10665/3... ) represented the scientific community.

Following a series of childhood cancer workshops and regional dialogues in 2019, Central American countries, the Dominican Republic and Haiti recognized the need to develop national childhood cancer control plans. PAHO and its collaborators – the St. Jude Global Pediatric Medicine Team, Persistent Productions and the Harvard Humanitarian Initiative – planned and organized session two to support the eight countries in implementing national and regional cancer control initiatives. Countries achieved this goal using St. Jude Children’s Research Hospital’s C5 Tool, which is a participatory mapping tool designed to aid in decision-making in health care systems, with a focus on facilitating collaboration and strategic planning. It consists of five sections: c1, evaluating national indicators; c2, mapping roles of institutions and organizations; c3, conducting a national analysis of strengths, weaknesses, opportunities and threats (or SWOT); c4, creating matrices for key health system areas; and c5, establishing priority collaborative portfolios. These sessions enable teams to identify short-term and long-term collaborative projects based on their value and the political will to implement them. The workshop used c2, c4 and c5 to define 10 priorities, rank them according to their value, which is context specific and varies across national prevention programs for cancer by country, and refers to societal or individual desirability. The political will component signifies whether there is sustained commitment from leaders to achieve specific objectives. The C5 Tool produces actionable outputs for national programs and strategic planning by prioritizing initiatives based on these two criteria. It accommodates the perspectives of various stakeholders, such as the values held by patients, families, health care providers, policy-makers and funding agencies, thereby fostering a comprehensive, multidimensional approach to health care improvement.

For each prioritized action outcome ranked according to WHO’s six Health Systems Building Blocks, each country sought to formulate results for which it has the mandate and comparative advantage to implement, by identifying several CureAll-based outputs that require the leadership of the country’s Childhood Cancer Committee and its contribution to outcome-level change. For instance, if a country prioritizes the outcome of providing high-impact health care to all children and adolescents with cancer, especially those living in vulnerable conditions, the country could focus on the following strategies: accelerating scale up of the essential package of universal health coverage, implementing centers of excellence for early childhood cancer diagnosis and ensuring access to essential medicines and technology for diagnosis. By taking these actions, all children and adolescents with cancer, particularly those in vulnerable conditions, can survive and thrive within their communities.

Each country selected a strategic activity for phased implementation to span an overlapping period of 2 calendar years, 2022 and 2023 (Table 3), and utilized storytelling to share insights with other teams and involved stakeholders. After the workshop, country teams continued to implement action plans. To ensure robust oversight and continual improvement, regional and country teams involved in the Global Initiative for Childhood Cancer engage in monthly progress meetings with key stakeholders, including PAHO and the team from St. Jude’s, as well as collaborating entities across Latin American and Caribbean nations. These interactive sessions serve as a platform for data-driven dialogue and evidence-based adjustment of strategies. Personalized technical assistance is also provided by PAHO and the St. Jude’s team upon request, and aims at resolving unique challenges and optimizing implementation processes. The post-workshop report generated from these meetings offers a comprehensive guide, replete with methodological insights designed to facilitate replication of the workshop in different settings, be it in other PAHO or WHO regional offices, other countries or other hospital systems. This report serves as a knowledge transfer mechanism, with participants sharing actionable insights, lessons learned and targeted action plans aimed at incorporating storytelling techniques into their respective health care environments.

Additionally, the workshop’s outputs have helped prioritize cancer control strategies in national pediatric cancer plans and support the Initiative’s activities, and development of key documents, such as those about resource mobilization and national and regional cooperation strategies.

Two weeks after the workshop, organizers shared meeting notes and recordings with the participants, along with the potential next steps to be taken. Childhood Cancer Committees are collaborating with the Regional Office for the Americas, PAHO country focal points and the St. Jude Children’s Research Hospital’s Global Pediatric Medicine Team to address the action points.

DISCUSSION

The How I live film and virtual workshop were designed to engage participants in a discussion prompted by the film and guide health care stakeholders’ understanding of the health information conveyed.

Benham Asl et al. have stated that digital storytelling can be used as an effective way to securely share interactions and emotions directly from videos so that their content can be disseminated to researchers, clinicians, participants and policy-makers (¹1. Benham Asl S, Gill C, Umstead K, Mahtani R, Tully K. A collaborative approach to digital storytelling in healthcare settings [Internet]. In: Bohemia E, Buck L, Grierson H, editors. DS 117: Proceedings of the 24th International Conference on Engineering and Product Design Education. Glasgow: Design Society; 2022 [cited 2022 September 8]. Available from: https://www.designsociety.org/publication/45888/A+COLLABORATIVE+APPROACH+TO+DIGITAL+STORYTELLING+IN+HEALTHCARE+SETTINGS
https://www.designsociety.org/publicatio... ). Therefore, to leverage the growing emphasis and relevance of intentional stakeholder engagement, the organizers successfully developed and implemented an interactive workshop using storytelling through film to engage key stakeholders and build momentum for sustainable capacity-building in global childhood cancer care.

Based on the study by Brooks et al. (¹⁶16. Brooks SP, Zimmermann GL, Lang M, Scott SD, Thomson D, Wilkes G, Hartling L. A framework to guide storytelling as a knowledge translation intervention for health-promoting behavior change. Implement Sci Commun. 2022;3:35), systematic reviews indicate that storytelling can influence positive changes in health-related behaviors. Utilizing storytelling as a method for knowledge translation is complex and demands meticulous planning, taking into account various factors. Considering these data, the organizers used a two-session structure for the workshop (i.e. an introductory session followed by skills-building exercises with interactive breakout groups) that provided participants first with a general overview about using compelling narratives, followed by an opportunity to practice the art of storytelling.

Forsythe et al. (³3. Forsythe LP, Ellis LE, Edmundson L, Sabharwal R, Rein A, Konopka K, Frank L. Patient and stakeholder engagement in the PCORI pilot projects: description and lessons learned. J Gen Intern Med. 2016;31:13-21.) discussed the use of a self-report instrument to highlight varying levels of engagement, ranging from consultation to collaboration, in bidirectional partnerships with researchers and even to stakeholder-directed projects. In this context, the authors emphasized the significance of continuing partnerships, strategic selection of stakeholders and the accommodation of stakeholders’ needs as crucial lessons. Similarly, from the perspective of the workshop’s organizers and participants, several key takeaways were identified as lessons learned.

The organizers and participants recognized that storytelling allowed childhood cancer experts to reflect upon and craft a personal message to enable stakeholders to connect emotionally with the challenges faced by children with cancer, their family and health care providers throughout the treatment process.

A heartfelt narrative is pivotal to stakeholders building networked alliances to identify and understand how to tackle the disparities in childhood cancer that exist between LMICs and HICs. Participants indicated that the How I live film possesses the ability to transform statistics into relatable stories, galvanize collective action and, ultimately, catalyze meaningful change, fostering collaboration in the realm of childhood cancer care.

Participants and organizers described storytelling as a tool that can be used to engage stakeholders in childhood cancer care to increase their awareness and open a national or regional dialogue to serve as a springboard for the Theory of Change processes of reflection and insight, and to prioritize a cancer-specific call to action by identifying the barriers and facilitators to improving health care access for children and adolescents with cancer, thus reducing their suffering and improving their survivorship.

After the workshop, the organizers held a conference call to discuss and assist with collaborative problem analysis and strategy development.

Virtual workshops have limitations, such as the limited time between sessions during a 5-hour program. Because of these concerns, it may be better to divide the workshop into 2 days. Another concern is the time-consuming follow up required for the prioritization activities and to develop outputs from the eight countries’ groups. The organizers, who specialize in planning for childhood cancer control, will guide and support the Childhood Cancer Committees in their decision-making and implementation of strategies.

Despite the workshop’s positive impact, some participants reported uncertainty about the preworkshop tasks and framing their stakeholders’ stories. For future iterations, the organizers will spend more time reviewing the story development process and provide explicit instructions to improve participants’ understanding of each activity’s aims.

In conclusion, these findings are consistent with those of Al-Huneidi and Schreurs (¹⁷17. Al-Huneidi A, Schreurs J. Constructivism-based blended learning in higher education. In: Lytas RD, Tennyson RD, Ordonez de Pablos P, García Peñalvo FJ, Rusu L, editors. Information systems, e-learning, and knowledge management research: WSKS 2011. Berlin: Springer; 2013.), who reported that storytelling generated strong emotional engagement among audiences working in higher education while allowing them to maintain high levels of attention and interest. The organizers noted a regional learning process occurring among countries that fostered increased communication and collaboration among Childhood Cancer Committees. Following a national-level workshop by Panama’s Childhood Cancer Committee, which used storytelling to advance the prioritization of strategic activities for their pediatric cancer control plan, Costa Rica conducted 3 days of workshops. These workshops utilized storytelling to engage stakeholders, conduct a situational analysis of childhood cancer, prepare the planning process for childhood cancer control, identify childhood cancer control as a health priority, establish a nodal officer and form a technical working group with national and international experts.

The initial workshop not only intended to disseminate information but also to provoke thought and stimulate conversation, making the information more relatable and memorable and facilitating the implementation of sustainable strategies to improve health systems to care for children with cancer at the regional level.

Disclaimer.

Authors hold sole responsibility for the views expressed in the manuscript, which may not necessarily reflect the opinion or policy of the Revista Panamericana de Salud Pública/Pan American Journal of Public Health or the Pan American Health Organization.

Acknowledgments.

The authors acknowledge the support of the Health System Units and Global Pediatric Medicine Department at St. Jude Children’s Research Hospital for contributing as facilitators and for the use of the C5 Tool during the workshop. The authors also thank the participants of the workshop for their valuable feedback and contributions.

REFERENCES

Publication Dates

History