D Murphy1, P Kashal2, G P Quinn3, K K Sawczyn4, A M Termuhlen5. 1. Jonathan Jaques Children's Cancer Center, Miller Children's Hospital, Long Beach, CA. Electronic address: dmurphy@memorialcare.org. 2. University of California Irvine, Irvine, CA. 3. Health Outcomes and Behavior Program, Moffitt Cancer Center, Tampa, FL; College of Medicine, University of South Florida, Tampa, FL. 4. All Children's Hospital, Johns Hopkins Medicine, St Petersburg, FL. 5. Jonathan Jaques Children's Cancer Center, Miller Children's Hospital, Long Beach, CA.
Abstract
STUDY OBJECTIVE: Education materials detailing fertility preservation options geared towards pediatric oncology patients are inadequately available, particularly materials that are culturally tailored. An English language pediatric fertility preservation brochure was developed in 2011, and given the significance of family building among Hispanics, it is important to transcreate materials for these audiences using learner verification to explore the unique preferences of the population. DESIGN: Qualitative face-to-face interviews and focus groups. PARTICIPANTS: Spanish-speaking patients (n = 10), parents (n = 10), and healthcare providers (n = 5). Suggestions for revisions were tested with focus groups of the same population (N = 16). MAIN OUTCOME MEASURES: Design, readability, likelihood to read, and overall opinion. RESULTS: Feedback was organized into 2 distinct themes: design and reader action. Overall the majority of parents and patients wanted personal accounts of other patients who had undergone fertility preservation, as well as photos of actual patients. The medical terminology in the brochure was acceptable and understood by most. The majority of participants who preferred the design with vivid colors and patterns explained this was because that brochure also contained more relevant information; however, both brochures had identical information. Many participants explained they would be receptive to receiving the brochure and the reproductive health information should be reinforced throughout cancer care. CONCLUSIONS: A learner verification approach to create pediatric educational materials can judiciously identify unique preferences for information. These results will be utilized to educate Spanish-speaking pediatric oncology patients and their parents to improve decision-making processes regarding future parenthood.
STUDY OBJECTIVE: Education materials detailing fertility preservation options geared towards pediatric oncology patients are inadequately available, particularly materials that are culturally tailored. An English language pediatric fertility preservation brochure was developed in 2011, and given the significance of family building among Hispanics, it is important to transcreate materials for these audiences using learner verification to explore the unique preferences of the population. DESIGN: Qualitative face-to-face interviews and focus groups. PARTICIPANTS: Spanish-speaking patients (n = 10), parents (n = 10), and healthcare providers (n = 5). Suggestions for revisions were tested with focus groups of the same population (N = 16). MAIN OUTCOME MEASURES: Design, readability, likelihood to read, and overall opinion. RESULTS: Feedback was organized into 2 distinct themes: design and reader action. Overall the majority of parents and patients wanted personal accounts of other patients who had undergone fertility preservation, as well as photos of actual patients. The medical terminology in the brochure was acceptable and understood by most. The majority of participants who preferred the design with vivid colors and patterns explained this was because that brochure also contained more relevant information; however, both brochures had identical information. Many participants explained they would be receptive to receiving the brochure and the reproductive health information should be reinforced throughout cancer care. CONCLUSIONS: A learner verification approach to create pediatric educational materials can judiciously identify unique preferences for information. These results will be utilized to educate Spanish-speaking pediatric oncology patients and their parents to improve decision-making processes regarding future parenthood.
Authors: Enmanuel A Chavarria; Shannon M Christy; Vani N Simmons; Susan T Vadaparampil; Clement K Gwede; Cathy D Meade Journal: Health Lit Res Pract Date: 2021-02-01