Lay summary
This study will collect the first comprehensive New Zealand data of whānau and family experiences of paediatric palliative care for both Māori and non-Māori. This data will be utilised to inform development of paediatric palliative care services in Aotearoa to meet the needs of over 3,000 children living with life-limiting/life-threatening conditions and their families/whānau. Improving service delivery has significant economic benefit, through reduced admissions, less bed nights in hospital and avoidance of distressing interventions. We will co-create with participants resources using creative arts approaches to support knowledge development and empower whānau and communities caring for a child with palliative care needs. These resources will be accessible through a range of mediums and available across all levels of paediatric palliative care. Findings will also contribute to health professional education, ensuring a strong whānau voice enables health professionals to reflect on practice, developing whānau centred approaches to care.