JMIR Publications

ABSTRACT

Background:

Informal carers often assume key roles in cancer care. However, many carers report feeling disempowered and ill‐equipped to support patients. Our group published evidence‐based guidelines (the TRIO Guidelines) to improve i) oncology clinician engagement with carers and ii) management of challenging situations involving carers.

Objective:

To facilitate implementation of the TRIO Guidelines into clinical practice, we aimed to develop a suite of online education modules, for i) oncology clinicians (eTRIO), ii) cancer patients and iii) carers (eTRIO‐pc). These were designed to improve carer involvement, communication, and shared decision-making in the setting of cancer management.

Methods:

eTRIO education modules were based on extensive prior research including systematic reviews, qualitative interviews, and consultation analyses. Guided by the Person-Based Approach, module content and design were reviewed by an expert advisory group comprising academic and clinical experts (n = 9) and consumers (n = 5); content and design were continuously iteratively refined. User experience testing of the modules was completed by additional clinicians (n = 5), patients (n = 3) and carers (n = 3).

Results:

The final clinician module comprises 14 sections, takes approximately 1.5-2 hours to complete, and covers topics such as carer-inclusive communication and practices, supporting carer needs, and managing carer dominance, anger and conflicting patient-carer wishes. The carer module features 11 sections, taking approximately 1.5 hours to complete, and includes topics such as the importance of carers, carer roles during consultations, and advocating for the patient. The patient module is an adaptation of the relevant carer module sections, comprising 7 sections, taking 1 hour to complete. Interactive activities and clinical vignette videos, as well as reflective learning exercises are incorporated into all modules. During the design process we learned valuable lessons about user preferences. Clinicians often desired information in a concise format divided into small “snackable” sections that could be easily recommenced if they were interrupted. Patient and carer consumer advisors advocated for empathetic content and tone throughout their modules, with an easy-to-read and navigable module interface.

Conclusions:

The eTRIO suite of modules have been rigorously developed using a person-based design methodology to meet unique information needs and learning requirements of clinicians, patients, and carers, with the goal of improving effective and supportive carer involvement in cancer consultations and cancer care. Pre-post evaluation of the effectiveness of the eTRIO modules in improving carer communication and engagement in medical consultations is currently being conducted.