Purpose This study aimed to develop and examine the acceptability, feasibility and usability of a text messaging, or Short Message Service (SMS), system for improving the receipt of survivorship care for adolescent and young adult (AYA) survivors of childhood cancer. Methods Researchers developed and refined the text messaging system based on qualitative data from AYA survivors in an iterative 3-stage process. In stage 1, a focus group (n=4) addressed acceptability; in stage 2, key informant interviews (n=10) following a 6-week trial addressed feasibility; and in stage 3, key informant interviews (n=23) following a 6-week trial addressed usability. Qualitative data were analyzed using a constant comparative analytic approach exploring in-depth themes. Results The final system includes programmed reminders to schedule and attend late effects screening appointments, tailored suggestions for community resources for cancer survivors, and messages prompting participant feedback regarding the appointments and resources. Participants found the text messaging system an acceptable form of communication, the screening reminders and feedback prompts feasible for improving the receipt of survivorship care, and the tailored suggestions for community resources usable for connecting survivors to relevant services. Participants suggested supplementing survivorship care visits and forming AYA survivor social networks as future implementations for the text messaging system. Conclusions The text messaging system may assist AYA survivors by coordinating late effects screening appointments, facilitating a partnership with the survivorship care team, and connecting survivors with relevant community resources. Implications for Cancer Survivors The text messaging system has the potential to improve the receipt of survivorship care.

No abstract

Background Minority adolescent and young adult (AYA) cancer survivors experience disparities in receipt of survivorship care. Objective This study describes the infrastructure of a community-partnered participatory research (CPPR) project between a community-based organization and a National Cancer Institute (NCI)-designated cancer center to develop culturally-tailored interventions to improve Latino AYA cancer survivor knowledge regarding their need for survivorship care. Methods Research team participants included the community organization and NCI cancer center directors, research coordinators, a community liaison, and cross-training program interns. Through use of Jones’ theoretical framework, additional stakeholders from academic and community settings were identified and invited to participate in the research team. A process evaluation and qualitative interviews were conducted to assess equal partnership between community and academic stakeholders and determine if the infrastructure followed the five core principles of CPPR. A grounded theory approach was used to analyze qualitative data. Conclusions CPPR between an NCI-designated cancer center and a community-based organization is a new research model for conducting minority AYA cancer survivor outreach. Open communication was critical in engaging the Latino community to discuss their survivorship needs. Community stakeholders were key to infrastructure success through fostering a cohesive partnership with and acting as the voice of the Latino community. Implementing a cross-training program promoted continued engagement of community members with academic partners. Proper infrastructure development is critical to building successful research partnerships in order to develop culturally-tailored interventions to improve survivorship care knowledge.

Background Low receipt of survivorship care by Latino adolescent and young adult (AYA) cancer survivors necessitates development of age-appropriate and culturally tailored interventions aimed at increasing their perceived need for survivorship care. Method This study describes the development and acceptability testing of a culturally tailored intervention, a photonovela, as part of a community-partnered participatory research (CPPR) project. A four-step approach to the photonovela’s development was implemented: (a) literature review, (b) RAND-modified Delphi method, (c) photonovela booklet development, and (d) photonovela acceptability testing through focus groups. Using the CPPR approach, community and academic experts and members worked together at all stages of this project to identify educational domains for the photonovela and ensure that community views and scientific knowledge were equally represented. Results Cancer survivors and their families described the photonovela as entertaining and relatable. Its story positively reflected their own experiences, and they connected strongly with its characters. Acceptability testing of the photonovela played a significant role in its final script and content, and provided additional new insights into understanding survivorship care perspectives for Latino AYA survivors and their families. Conclusion Equal and shared community and academic involvement through CPPR is essential in identifying unique needs and developing culturally acceptable educational interventions for Latino AYA cancer survivors. The photonovela was seen as an important educational resource in enhancing knowledge and increasing perceived need for survivorship care in this population.