The Qualitative DIGNISPACE Study: The Co-Design of a Life Review, Meaning-Making and Legacy Leaving Digital Intervention for Young People with Life-Limiting Conditions

Abstract

Background: Young people with life-limiting conditions have unmet psycho-spiritual needs. Dignity Therapy is a psycho-therapeutic end-of-life intervention that addresses life review, meaning making and legacy leaving. Studies of Dignity Therapy including young people are limited. Aim: To co-design a digital Dignity Therapy-based intervention for young people with life-limiting conditions (DIGNISPACE). Design: A qualitative study including focus groups (n=5) with hospice-based healthcare professionals (n=23), semi-structured interviews with young people with life-limiting conditions (n=13) and family carers (n=12). Data were analyzed using framework analysis. Results: Three main themes were derived; intervention purpose, amendments to the Dignity Therapy question protocol and content for a digital application. Findings influenced the development of DIGNISPACE and a model of dignity in young people with life-limiting conditions. Conclusions: DIGNISPACE addresses the psycho-spiritual needs of young people with life-limiting conditions, including tenets of the model of dignity in young people with life-limiting conditions in its content and delivery.