Advancing the Care Experience for Patients Receiving Palliative Care as They Transition From Hospital to Home (ACEPATH): Phase 2 of Codesigning an Intervention to Improve Hospital-to-Home Transitions for Patients and Family Caregivers

Background

Although many people nearing the end of life wish to die at home, many patients experience re-hospitalisation and hospital death. No end-of-life hospital-to-home interventions have been developed with patients and caregivers, and none have been tested in Canada. Through an iterative, participatory design approach, we codesigned an intervention in partnership with potential users of the final intervention: patients, family caregivers (FCs) and healthcare providers (HCPs).

Objective

This study (ACEPATH) aimed to use a patient, FC and HCP engaged codesign process to continue to iterate and refine an intervention for transition from hospital to home in preparation for a pilot implementation.

Methods

The codesign process consisted of: (1) Development of codesign workshop (CDW) materials; (2) CDWs with patients and/or their FCs, who iterated our team's previously developed checklists and reference materials; (3) Low-fidelity prototyping sessions with hospital and community HCPs, who provided feedback on the low-fidelity prototype, the guidebook (that combined the refined checklists and guides) and identified HCPs to facilitate the guidebook; and (4) High-fidelity prototyping sessions entailed simulated interactions between an HCP and a patient/FC using the intervention, accompanied by discussion for feedback.

Results

Participants identified several areas for refinement to enhance the relevance, clarity and acceptability of the guidebook intervention. Patients and FCs refined and organised questions into specific ‘moments’ that would be helpful for conversations with HCPs during their transition home. HCPs identified social workers, hospital home care coordinators and community home care coordinators as the best fit for facilitating completion of the guidebook at three moments (preparing to leave the hospital, immediately before discharge and getting comfortable at home).

Conclusions

We successfully codesigned a guidebook for hospital-to-home transitions that was amenable to patients, FCs and HCPs. The next steps will entail piloting the guidebook to evaluate its acceptability, appropriateness, feasibility, costs and fidelity.

Patient or Public Contribution

Patients and FCs who had lived/living experiences with hospital-to-home transitions near the end of life participated in codesign workshops and high-fidelity prototyping sessions. We used codesign to ensure the final intervention was aligned with participants' needs and experiences and would hopefully improve aspects of the hospital-to-home transition that are important to them.