Table 1.
Summary of data collection activities for phases 1 and 2
| Phase (component) | Description |
| P1 (patients) | The survivor topic guide will cover: the impact of the brain tumour on health and well-being; understanding and views of self-management; self-management strategies currently and previously used by the individual; other self-management strategies the individual might like to, or be willing to use; experience of formal and informal support for self-management; difficulties experienced with, and barriers to, self-management; and what would help the individual better self-manage. |
| P1 (informal carers) | The informal carer topic guide will cover: their views and attitudes towards self-management for their support recipient; their contributions to support the recipient’s self-management; and barriers and facilitators to support the recipient self-managing. |
| P1 (professionals) | The professionals’ topic guide will cover: views on main areas of unmet needs among LIGG survivors; potential for self-management among LIGG survivors; own experiences of patients who have used self-management; and what would be needed to successfully deliver supported self-management for LIGG survivors. |
| P2 (workshop A) | Workshop A with survivors and informal carers will generate ideas for what is needed to improve self-management in LIGG survivors and what support would be useful. Potential activities include presenting evidence statements based on the systematic review and phase 1, asking participants to review and prioritise these. To generate intervention design ideas, personas66 (‘characters’ representing different people affected by LIGG) will be generated prior to the workshop. Workshop participants will be asked to consider what an intervention for each specific persona might involve (components, mode of delivery and so on). De Bono’s ‘Six hats’ approach67 may also be used to encourage participants to reflect on the needs and perspectives of patients, informal carers and professionals. |
| P2 (workshop B) | Workshop B with professionals and other stakeholders will follow a similar format to workshop A, and develop the ideas generated by survivors and informal carers. Participants will also discuss the feasibility of implementing the concepts from workshop A into current care pathways. |
| P2 (workshop C and D) | Workshop C and, if needed, D, with survivors, informal carers, professionals and stakeholders will seek participant feedback on supported self-management programme prototypes, developed following workshops A and B. Participants will discuss potential challenges around acceptability and feasibility of survivors’ effectively engaging with the programme. |
LIGG, low- and intermediate-grade glioma.