ABSTRACT

Advances in medical science and technology are saving the lives of more children worldwide than ever. Some survive and live out a normal life expectancy, others have a life-limiting/life-threatening diagnosis where death may come early, and still others will live on well past projected life trajectories into adulthood. With so many different care pathways, children, parents and communities often find themselves facing challenges for which neither they nor their healthcare systems are prepared. This book opens a global discussion of these issues. Extending Rita Pfund's text Palliative Care Nursing of Children and Young People, it invites paediatric palliative care professionals, parents and children from around the globe to share their knowledge and experience. This book is of vital interest to palliative care professionals, parents, policy makers and academics. It is an important move towards ensuring that all children and their families, regardless of geographical location, gender, ethnicity or socio-economic class have equal and guaranteed access to comprehensive paediatric palliative care services.

chapter |8 pages

Introducing our discourse

section 2|2 pages

Focusing on families: hearing the evidence

chapter 9|9 pages

Part 1: The parent’s voice

chapter 2|8 pages

Jamie’s continuing care domains

chapter 10|9 pages

Part 1: A child’s life path

chapter 12|7 pages

Hearing the voices of siblings

chapter 13|6 pages

Transitions within the family

section 3|2 pages

Minimising crisis points in paediatric palliative care

section 5|2 pages

Evidence/knowledge transfer into practice