The Parental View of Kidney Care

A young adult’s transition from paediatric care to adult care is a particularly stressful time for parents, as the health care professionals and processes they have dealt with for a number of years change. Alongside this, there is also a desire by services to assist families in shifting responsibility of health management from parents to the young adults themselves. This report explores the impact of kidney disease from the point of view of parents, and looks at the intricacies of their relationships with young adults. It explores ‘letting go’, the challenges faced during the transition to adult care, the impact kidney disease has on young adults and their families, their expectations of HCPs and the parents’ thoughts on their families future. The overall aim of this project was to develop a guide to help clinicians support parents and families of patients with kidney disease. Based on the ethnographic interviews and follow-up interviews with three parents, the guide provides advice and recommendations for HCPs on the types of information and support parents and families would find helpful.

Short films from this project were presented on 20th March 2013 at a roundtable discussion at the King’s Fund in London, which culminated in a summary report articulating key challenges and potential solutions.

• Download the Roundtable Discussion Report (PDF)