Planning, developing and testing a digital health intervention for health and social care professionals to deliver family-centred cancer supportive care when an adult with significant caregiving responsibilities for dependent children is at end of life

Introduction Families are often unsure how best to prepare children for the death of a significant caregiver with a poor cancer prognosis. Children less prepared for this experience are at increased risk of adverse outcomes. Health and social care professionals (professionals) are ideally placed to provide this important aspect of supportive cancer care, but often feel they lack the training, knowledge, and confidence. Using the ‘Person-based approach’, the aim of this study was to plan, develop and test a theory-driven educational intervention to equip professionals to provide this important aspect of family-centred cancer care in practice.

Methods The planning and development phase of the intervention combined evidence from a systematic review of existing educational interventions for professionals, data generated from primary studies with adults and children (pre-and-post bereavement), professionals and funeral directors, a steering group, and logic model. Iterative cycles of ‘think-aloud’ interviews were conducted with 13 professionals for usability testing, with continuous movement between data collection, analysis and modifications to the resource. Individual feedback was captured from subject and digital experts, and bereaved adults and children.

Results The systematic review identified a paucity of existing interventions in this area (n=2). Co-produced educational video resources were integrated, and a ‘Talking, Telling, Sharing: End of Life Communication Framework’ was adapted for utilisation within the resource. Key navigational difficulties were identified during the user-testing phase, with minor changes to language and content. Feedback from subject and digital experts, and bereaved adults and children complemented the development and refinement of the prototype to enhance the accessibility of the intervention.

Conclusions A co-produced, theory-driven and evidence-based intervention has the potential to promote family-centred cancer care at end-of-life, and facilitate better health outcomes for the affected family members and children. An evaluation of the intervention is required to explore its acceptability and useability in practice.