JMIR Publications

ABSTRACT

Background:

Ostomy creation for cancer treatment negatively impacts the quality of life for both patients and caregivers. Hispanic cancer patients and caregivers often face additional challenges, including having limited access to supportive care programs.

Objective:

This study aimed to examine the experiences and preferences of Hispanic cancer patients and caregivers living with ostomies to inform the cultural adaptation of an existing intervention program and the development of Programa de AutoCuidado de Estoma (PACE).

Methods:

In this two-stage study, we used a mixed-methods design, starting with an initial survey followed by qualitative interviews to explore the lived experiences, needs, and intervention preferences of Hispanic patients and caregivers managing ostomy care. Braun and Clarke’s six-phase approach to thematic analysis was used to analyze the data. Subsequently, we applied Affinity Diagraming and Persuasive Systems Design principles to guide the design and development of PACE.

Results:

We recruited 14 Hispanic cancer patients and their caregivers managing an ostomy All participants completed the survey and participated in interviews until data saturation was reached. Three major themes emerged regarding the experience of ostomy care: perceptions of living with an ostomy, seeking support, and post-surgery challenges. Additionally, two primary themes were identified regarding user preferences for ostomy care interventions: evaluation of existing content, delivery format, and language and recommendations for delivery methods, timing, and the inclusion of family and peer support. These themes informed the development of a web-based, user-friendly, 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 of Hispanic patients and caregivers and the need for culturally tailored health interventions to address the needs of underserved populations. This theory-guided study represents the first to integrate the Persuasive Systems Design framework into ostomy care intervention, highlighting the potential of such approaches to enhance patient and caregiver engagement and support in managing their health conditions. Based on the findings from our previous pilot feasibility study and current research, the PACE web-based intervention is ready for evaluation in a sufficiently powered clinical trial to evaluate its effects.