Table 1 Description of themes identified
Standalone theme 1: Communication during end-of-life care Care is affected by how and when health professionals communicate about end-of-life decisions with children and their families | ||
Overarching theme 2: Getting end-of-life services and staff in the right place The coordination and delivery of paediatric end-of-life care can be inequitable because of challenges around services and staffing | ||
Theme | Description of theme | Sub-themes |
1. Access to, and staffing of end-of-life care | Paediatric end-of-life care is not always equitable because of the nature of palliative care, the way that services were developed historically, and because of staff shortages | a. Access to end-of-life care services b. Large areas, small numbers, high intensity c. Staff shortages and “goodwill” d. 24/7 advice lines and regional networks |
2. Inconsistent and insufficient funding for end-of-life care services | Funding for paediatric end-of-life care services can be difficult to obtain. When it is available, it can be unreliable | a. Difficulties sourcing and maintaining sufficient funding b. Reliance on charitable organisations |
Overarching theme 3: Linking up healthcare provision The challenges and successes that come from the requirement for end-of-life care to be coordinated and delivered across different services, organisations and locations | ||
Theme | Description of theme | |
1. Coordination successes | Positives that result from formal and informal relationships between services | |
2. Role of the networks | Networks would be best placed to reduce equity in end-of-life care | |
3. Coordination challenges | Difficulties caused by having to work across organisational and administrative boundaries | |