Purpose
Death and dying are often difficult topics to broach for patients, families and cancer clinicians. This study co-developed and disseminated a digital resource to support meaningful end-of-life conversations between patients, carers and their treating team.
Methods
Drawing on existing co-designed resources, evidence-based information and lived experience advice, this qualitative study drafted the end-of-life resource with consumers and clinicians. Informed by the Theoretical Framework of Acceptability Model (to assess acceptability of healthcare interventions) data were gathered from 15 patients, carers, and bereaved carers in 6 focus groups and 10 clinician interviews. Participants provided feedback on the content, functionality, and "values fit" of the resource. Qualitative data generated were analysed using summarising content analysis.
Methods used to communicate the resource’s availability and encourage use included placing awareness-raising postcards in locations accessed by consumers across Peter Mac and upskilling clinicians in meetings, newsletters and forums. Uptake was monitored over 16 months.
Results
Contributing participants described the resource as non-threatening and holistic, creating a sense of calmness. Content of the Preparing for end-of-life webpages was described as clear, comprehensive and acceptable. All participants described the resource as valuable and were confident the intervention would be used.
Confirming imagery for the webpages and promotional postcards highlighted incongruity between participants preferring inclusive images (e.g. of multicultural families) and reporting images of nature would have more general appeal. And despite participants advocating “death and dying” be normalised, reluctance to publicise the resource due to the sensitivity of the topic was encountered.
Analytics demonstrate the resource is being reasonably well used, especially in less talked about topics such as End-of-Life Care and What happens at the end
Conclusion
Ongoing promotion is required to encourage utility of our consumer and clinician endorsed digital resource. A study to evaluate efficacy will be an important next step.