JMIR Cancer. 2026 Feb 3;12:e70354. doi: 10.2196/70354.
ABSTRACT
BACKGROUND: Ostomy creation for cancer treatment negatively impacts the quality of life of both patients and caregivers. Hispanic patients with cancer and caregivers often face additional challenges, including limited access to supportive care programs.
OBJECTIVE: This study aimed to examine the experiences and preferences of Hispanic patients with cancer living with ostomies and their caregivers to inform the cultural adaptation of an existing intervention program and the design of Ostomy Self-Care Program (Programa de AutoCuidado de Estoma [PACE]).
METHODS: In this 2-stage study, conducted between March and August 2023 in San Antonio, Texas, we used a qualitatively driven mixed methods design, starting with an initial survey followed by qualitative interviews to explore the experiences, needs, and intervention preferences of Hispanic patients and caregivers managing ostomy care. We used Braun and Clarke’s 6-phase thematic analysis approach to analyze the qualitative data and performed descriptive analysis for the quantitative data. Subsequently, we applied affinity diagramming and persuasive systems design principles to guide the design of PACE.
RESULTS: In total, 14 Hispanic participants managing an ostomy (9 patients with cancer and 5 caregivers) completed a survey and participated in interviews, continuing until data saturation was reached. Participants had a mean age of 58.9 (SD 13.01, range 37-79) years, and most (n=12) reported a high school diploma or General Educational Development as their highest education level. Around 5 (36%) participants scored below 26 on the eHealth Literacy Scale (eHEALS), indicating low digital health literacy, and the average Charlson Comorbidity Index (CCI) was 3.21 (SD 1.86, range 0-6). Overall, 3 major themes emerged from the qualitative data analysis, namely perceptions of living with an ostomy, seeking support, and postsurgery challenges. Additionally, two primary themes emerged from participant interviews: (1) importance of preferred language and multimedia delivery and (2) patients and caregivers desire early introduction, multimodal delivery of materials, and inclusion of peer and family support. These themes informed the design and development of a culturally appropriate, web-based, bilingual PACE intervention that integrates content visualization, cultural adaptations, and persuasive technologies-strategies designed to encourage user engagement.
CONCLUSIONS: Our findings emphasize the importance of understanding the ostomy care experiences, supportive care needs, and intervention preferences of Hispanic patients and caregivers. Informed by stakeholders’ insights, we culturally adapted the original intervention program using persuasive systems design principles to design and develop the PACE intervention, aiming to enhance engagement among Hispanic patients with cancer and caregivers, support effective self-management of ostomy care, and improve health outcomes.
PMID:41632962 | DOI:10.2196/70354
