Engaging Patient and Caregiver Partners in Codeveloping a Patient Educational Video for Improving Clostridioides difficile Infection Education: Participatory Co-Design Study

TL;DR

This study involved patients and caregivers in creating an educational video about recurrent Clostridioides difficile infection to better address their needs and gaps in information.

Contribution

The study demonstrates a participatory co-design approach to develop a patient-centered educational video on rCDI, incorporating feedback from patients and caregivers.

Findings

Patients and caregivers expressed a need for credible information on treatment options and the impacts of rCDI.

A video format was preferred for educational resources due to its accessibility and clarity.

The co-developed video was well-received but uncertainties remain about the most effective educational format.

Abstract

Patients with recurrent Clostridioides difficile infection (rCDI) and their caregivers often face considerable uncertainty regarding medical management, including the use of fecal microbiota transplantation (FMT), largely due to the scarcity of accessible and credible educational resources. Codeveloping educational materials with patients and caregivers offers a structured way to address these gaps and ensure that resources reflect the informational, psychological, and emotional needs of patients.

The study team sought to cocreate an educational resource through an iterative process including patient and caregiver partners with lived experience of rCDI to improve C difficile infection education.

This study examined the cocreation process of a patient-centered educational resource between the study team and patient or caregiver participants through a series of focus group (FG) sessions. Five participants took part in 3 serial FG sessions (3-5 participants each) over 13 months. Each FG session was audio recorded, transcribed, and analyzed using the NVivo (version 14) quantitative analysis software. A semantic thematic analysis framework was applied to interpret the results. Key areas of concern and preferred formats were identified following the first FG session. The first version of the educational resource was developed by the study team to address areas of concern and was iteratively refined following feedback from subsequent FG sessions with the study participants.

Participants expressed concerns about the lack of credible information on treatment options and their associated risks, especially with regard to FMT. They noted inadequate coverage of C difficile infection recurrence and its physical, psychological, and emotional impacts. Participants expressed a preference for educational resources in video format. On the basis of further feedback, refinements were made to improve pacing, consistency of animation, and narration, incorporating emotional and mental health considerations. The codeveloped video was well received and valued for its clear language, messaging, step-by-step guidance, and overall accessibility and clarity.

Our study demonstrated the feasibility and utility of patient and caregiver involvement in cocreating an educational resource on the management of rCDI, with FMT being a treatment option. Despite efforts to address knowledge gaps and preferences expressed for a video format, uncertainties remain regarding the most effective educational resource format. The integration of patient, caregiver, and study team perspectives contributed to a codeveloped video that addresses unmet needs and is patient centered. However, diverse patient experiences remain underrepresented. Future research should consider including more diverse participants as well as evaluating the effectiveness of knowledge improvement through various educational resource formats and patient health care experiences and levels of satisfaction.

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