Building capability in paediatric palliative care and enhancing education through the voice of parents: the Quality of Care Collaborative Australia.

It is often the wish of many children/young people with a life-limiting condition to stay at home with their families as much as possible. It is important that specialist palliative care services provide training and mentoring to the family's local care professionals to support the delivery of good care, particularly those in rural and remote areas.This article aims to integrate the lived experience of families with palliative care education, so that the education reflects and addresses the needs that they express.Parents were interviewed by telephone using a method called Discovery Interviews. This is an open interview process, guided by a spine that describes the main points of palliative care. Parents can openly talk about their experience, focusing on the areas that are important to them. Interviews were studied by four researchers, and emerging themes were discussed and summarised.The study included parents whose child/young person was receiving support from specialist palliative care and bereaved parents whose child had died more than 6 months ago. In total, eleven parents (nine mothers and two fathers) were interviewed, five participants had children currently receiving palliative care and six were bereaved.The overarching themes were as follows:Burden of suffering, in which parents described grieving for the life they had expected, confronting transitions and seeking good quality of life for their child.Umbrella of support, in which parents built partnerships with care teams and activated a network of care to address the needs of their whole family.This study allowed the families' perspectives to be integrated into the palliative care education of care professionals in the family's local area. The lived experience of families prepared care professionals to support families with the care of their child/young person, allowing them to remain at home as long as possible.