Maximising patient and public involvement in the planning, development and testing of a digital health intervention for health and social care professionals when an adult with a significant caregiving responsibility for dependent children is at end-of-life with cancer

Introduction Health and social care professionals (professionals) often lack the knowledge, skills, and confidence to support adults at end-of-life with cancer who have a significant caregiving responsibility for children, <18 years.

Aims To plan, develop and test an evidence-based, eLearning resource to equip professionals to communicate with, and support families at end-of-life regarding the children using the ‘Person-based approach’.

Method The planning and development phases of the resource prototype combined evidence from the literature, a logic model, patient and public involvement (PPI), and a face-to-face educational intervention. An iterative approach of ‘think-aloud’ interviews for prototype usability testing were conducted with professionals (n=13), resulting in three cycles of data collection, analysis, and modifications to the intervention. A range of PPI individuals (n=14) were involved at different timepoints in planning, development, and user-testing cycles, including bereaved adults and children, and digital and subject experts.

Results Involvement of end-users in all aspects of this process optimised the intervention development. A series of co-produced educational video resources were integrated to promote experiential learning, and an evidence-based communication framework was adopted and embedded within the resource. Individual and collective PPI input at each phase captured important insights, reflections and perspectives that complemented the intervention development and refinement. Alongside navigational difficulties, modifications were made to the content of the resource during the user-testing cycles.

Conclusion The systematic and iterative ‘Person-based approach’ optimised the acceptability of a novel resource to promote relevance, appropriateness, and applicability. Maximising and flexible PPI input in the development of digital health interventions beyond traditional project steering groups is highly beneficial in promoting rigour, relevance, and quality of the intervention.

Impact The intervention has the potential to impact professionals’ provision of family-centred cancer care at end-of-life, resulting in better mental and physical outcomes for the whole family, pre-and-post bereavement.