Using a Photonovela to Improve Survivorship Education for Latino Adolescent and Young Adult Cancer Survivors

Latino adolescent and young adult (AYA) cancer survivors often encounter unique barriers to survivorship care, including limited access to culturally responsive education, lower awareness of long-term follow up needs, language differences, and challenges navigating healthcare systems after treatment ends compared to other races/ethnicities. Many survivors report uncertainty about survivorship care and are less likely to fully understand the importance of ongoing monitoring, symptom management, and preventive follow-up after cancer treatment.

To help address these gaps, a culturally tailored survivorship education intervention for Latino AYA cancer survivors and their families was developed between an NCI-designated cancer center (UCLA) and a community-based organization (PADRES Contra El Cáncer (PADRES) to better serve Latino AYA cancer survivors.

Using a community-partnered participatory research (CPPR) approach, the team created a photonovela, a visual storytelling booklet that combines photographs, dialogue, and culturally relevant narratives to communicate health information in an engaging and accessible format. Research has shown that Latinos who received a photonovela showed improved depression treatment knowledge compared with those who received a traditional brochure.

The intervention was designed to increase awareness of survivorship care, strengthen understanding of long-term health needs after cancer treatment, and improve the perceived importance of ongoing survivorship follow-up among Latino AYA survivors. By integrating community perspectives throughout development, the project sought to ensure that the educational tool reflected the lived experiences, cultural values, and communication preferences of the population it was designed to impact.

The intervention team utilized a four-step development process informed by community-partnered participatory research principles:

• Literature review was conducted to identify survivorship care barriers and educational needs for photonovela content development.
  • Validated key themes for educating Latino AYA cancer survivors, including cancer-related stigma, misconceptions about long-term health risks after treatment, preference for independent engagement with providers when survivorship care plans are available, and lack of insurance as a major barrier to ongoing survivorship care.
• A RAND-modified Delphi method - a structured process used to identify priority topics- was used to determine key educational domains
• Collaborative development of the photonovela booklet and storyline with key partners
• Acceptability testing with Latino AYA survivors and family focus groups

Community members, survivors, families, and academic experts collaborated throughout all stages of development to ensure that scientific information and community perspectives were equally represented.

The photonovela used relatable characters, culturally familiar family dynamics, and narrative storytelling to communicate information about survivorship care, follow-up needs, and long-term health management after cancer treatment. To ensure accessibility, developers confirmed that the 31-page English and Spanish versions of the photonovela were written at a third-grade reading level, using the Flesch–Kincaid Readability test. The final product included the following information:

• Character descriptions to orient readers to the characters’ background stories
• Photonovela survivorship story (sample here)
• Actionable survivorship care planning tools and supplemental resources
• A sample survivorship care plan (SCP) and a blank and customizable SCP
• Glossary of term

The intervention prominently featured the importance of family involvement, culturally responsive communication, and health education strategies tailored to the developmental needs of Latino AYA cancer survivors. Survivors and families described the educational tools as entertaining, relatable, and reflective of their own experiences navigating survivorship care.

Additional findings included:

• Survivors and families described the photonovela as entertaining, accessible, and easy to understand
• Participants reported strong emotional connection to the storyline and characters
• Focus group feedback directly informed revisions to the final script and educational content
• The CPPR approach helped ensure balance between scientific expertise and community priorities

The photonovela model demonstrates how culturally responsive storytelling can increase awareness of survivorship care and strengthen its perceived importance among Latino AYA cancer survivors.

Several factors supported feasibility of the intervention:

• Development of low-cost and easily distributable educational materials
• Use of visual storytelling formats accessible across varying health literacy levels
• Integration of culturally and linguistically responsive communication strategies
• Use of community-partnered participatory research methods/principles
• Collaboration between academic researchers/program implementers, survivors, families, and community

The photonovela format may be particularly useful for younger populations with varying literacy levels or limited familiarity with survivorship care concepts. Since the intervention relied on educational storytelling rather than intensive clinical infrastructure, it is adaptable across community, outpatient, and survivorship care settings.

Challenges identified during development included:

• Limited awareness of survivorship care among survivors and families
• Need for culturally relevant educational materials tailored to Latino AYA populations
• Variability in health literacy and familiarity with medical terminology
• Balancing clinical accuracy with accessible communication styles
• Ensuring representation of diverse survivor experiences within the storyline

These findings highlight the importance of incorporating community feedback and culturally grounded communication approaches into survivorship education design.

The key insights from this initiative (see above) may be generally applicable to other racial or ethnic groups, and for other chronic illness, survivorship, or palliative care education initiatives. When developing new patient and caregiver education materials, working with community partners to reflect cultural considerations is key.

Long-term sustainability of this approach may require:

• Continued collaboration between healthcare systems and community organizations
• Ongoing adaptation of educational materials to reflect evolving community needs
• Integration of culturally tailored survivorship education into routine follow-up care
• Institutional investment in health literacy and culturally responsive communication strategies

Embedding culturally tailored educational tools into survivorship care workflows may help improve long-term engagement, understanding, and continuity of care for Latino AYA cancer survivors.

• Use culturally relevant storytelling to improve engagement and understanding
• Design educational materials that reflect patient and family experiences
• Prioritize accessible language and visual communication strategies
• Incorporate community voices throughout the intervention development
• Balance scientific accuracy with culturally responsive communication
• Adapt educational materials to meet varying health literacy needs

Jacqueline N. Casillas, MD, MSHS
Pediatric Oncologist, Jonsson Comprehensive Cancer Center, UCLA

Carl Bolano, MPH
UCLA Luskin School of Public Affairs

Elvia Barboa, MA
Padres Contra El Cáncer (PADRES)

Community and Academic Research Collaborators