Measuring outcomes in children with serious illness and their families: What matters?

By Eve Namisango, Cicely Saunders Institute

Children and families facing serious illness have to deal with complex symptoms and concerns at the various phases of illness. They have a high and intensive use of health services associated with a high risk of frequent hospitalisation, use of polypharmacy and multi-dimensional components of care to maintain a decent quality of life.

To provide care that meets their needs and optimize outcomes, we must measure what matters to the children and their families. The presentation will cover key novel evidence regarding symptoms and concerns that matter in pediatric palliative care and approaches to measuring “what matters”.

 

About the speaker

Eve Namisango is a final year PhD student at Cicely Saunders Institute, King’s College London. She has previously worked practiced child life support and child clinical psychology in outpatient and home-based care settings in Uganda. Eve has interviewed 61 children living with serious illness at different stages of the disease trajectory and 59 caregivers, in four African countries and this informs her discussion in this lecture.

About the seminar series

The Cicely Saunders Institute Open Seminar Series events are free to attend and there is no need to register.

This seminar is worth CPD (1 credit) pending from the Royal College of Physicians. 

The series aim is to optimise opportunities for local, national and international networking within palliative care and rehabilitation. We facilitate seminars to assist in improving practice, education and policy, and the integration of research and clinical endeavours.