Abstract:
The main objective of this study is to analyse and examine the rights of children and their families when a child suffers from a life-limiting illness, such as mitochondrial disease. The research investigates if those rights can be protected and balanced to ensure medical decisions are made in the best interest of the child. The study includes case studies, and also examines and considers relevant legislation, medical and legal decisions, end of life care and the best interests of the child. The study explores how social workers as a part of a palliative care team can support families and their children with life-limiting illness. The research undertaken for this study was secondary research. Thematic analysis was carried out drawing on the principles of constructivism and critical theory. The study found that a formal mediation process that supports parents’ rights and balances those rights with the rights of the child would be preferable to changing legislation
