Measuring the healthcare experiences of children and young people with a life-threatening or shortening conditions, and their parents

About the programme of work

Children and young people with life-threatening/life-shortening (LT/LS) conditions are among the heaviest users of health services. However, at the moment, we have no way of assessing and measuring their experience of healthcare.  This means there is a significant gap in our understanding of the quality of healthcare being provided to this population.  It also limits service improvement and service development efforts, and hampers research seeking to generate evidence on the best way to care for and support this population.  In this programme of work, we aim to addresses this evidence gap by developing measures of children and young people’s, and parents’, experiences of health services through a series of projects. 

Project 1: Scoping reviews of evidence on aspects of health service delivery and care that matter to children/young people and parents

Our first project identified and collated the findings from research that asked children and parents about their experiences of using hospital services (inpatient and/or outpatient).   From these we developed conceptual (or definitional) frameworks which set out the elements of health service delivery and care that matter to children/young people (CYP) with LT/LS conditions, and a separate framework for parents’ healthcare experiences.   The findings from this project were published in 2023 and can be accessed here.

Project 2: Development of hospital healthcare experience questionnaires for parents of children with life-threatening/life-shortening conditions. 

In this project we are working in partnership with NHS Scotland's Paediatric End of Life Care Managed Clinical Network, and their parent advisory group, to create parent-completed questionnaires that ask about their and their child’s experiences of hospital healthcare. The questionnaires will be based on the definitional frameworks we created in Project 1. Once developed, the questionnaires will be made available to clinical networks/NHS services which care for this population.

In later phases of the programme we intend to develop equivalent questionnaires that capture experiences of community-based healthcare and to run large scale field tests of the questionnaires. The field tests will allow us to report on their measurement qualities.

Research Team

• Professor Bryony Beresford
• Dr Suzanne Mukherjee
• Dr Natalie Richardson (Project 1)

External collaborators

Project 1

Professor Richard Harding, Cicely Saunders Institute of Pallliative Care, Policy and Rehabilitation, King's College London.

Professor Lorna Fraser, Cicely Saunders Institute, Department of Palliative Care, Policy and Rehabilitation, King's College London. 

Project 2

Paediatric End of Life Care Network, NHS Scotland