PP-34 Co-designing a digital meaning-making and legacy leaving intervention for young people with life-limiting conditions: the DIGNISPACE study

<h3>Introduction</h3> Dignity Therapy (DT) is a psycho-therapeutic end-of-life intervention supporting life review, meaning making and legacy leaving. DT is well-established with adults, impacting positively on mental well-being. Evidence and consultation work suggests young people (YP) with life-limiting conditions (LLCs) would welcome a tailored digital DT based intervention. <h3>Aim</h3> To co-design a digital DT based intervention, called DIGNISPACE, for YP with LLCs. <h3>Methods</h3> Qualitative methods included focus groups with health professionals (n=23), semi-structured interviews with YP with LLCs (n=13) and family carers (n=12). Data were analysed using framework approach. Participants were recruited from hospices in the North of England. An advisory group of YP with LLC and carers supported the study and content of the DIGNISPACE prototype. <h3>Results</h3> Three themes were derived from the data: 1) Intervention purpose including amendments to the DT question protocol; 2) App components, content, and delivery; 3) Networks and support systems. Findings informed a model of dignity in YP with LLCs and the DIGNISPACE prototype, a digital time capsule of memories, thoughts, and creative activities personal to the user. DIGNISPACE enables YP to review their lives, talk about memories and leave a legacy. DIGNISPACE helps them address issues challenging to them and can be used alone, or with trained DIGNISPACE supporters, friends, and family. When shared the content will provide comfort for the bereaved. <h3>Conclusions</h3> DIGNISPACE is a co-created psycho-therapeutic digital intervention aimed at supporting the psycho-spiritual well-being needs of YP with LLCs. DIGNISPACE includes tenets of the model of dignity for YP in its content and delivery. Further research is required to explore DIGNISPACE feasibility. <h3>Impact</h3> We have created a new model of dignity for young people to shape future interventions. DIGNISPACE is a tool to support individuals’ psycho-spiritual and conversational needs - helping health professionals work more sensitively with young people and families.

Authors

Institutions

Publication Details

Published
2025-02-01
DOI
https://doi.org/10.1136/spcare-2025-mcrc.51
Primary Topic
Innovative Approaches in Technology and Social Development
Type
article
Field-Weighted Citation Impact
0.00
Controls
|||
ALL TIME
JAN
FEB
MAR
APR
MAY
JUN
JUL
AUG
SEP
OCT
article

PP-34 Co-designing a digital meaning-making and legacy leaving intervention for young people with life-limiting conditions: the DIGNISPACE study

Joanna Smith, Allan Kellehear, Nahel Yaziji, Alison Rodriguez et al.
Innovative Approaches in Technology and Social Development
article

PP-34 Co-designing a digital meaning-making and legacy leaving intervention for young people with life-limiting conditions: the DIGNISPACE study

Joanna Smith, Allan Kellehear, Nahel Yaziji, Alison Rodriguez, Michael J Tatterton, Wilfred McSherry, Vita LaFranchi
article en

Abstract

<h3>Introduction</h3> Dignity Therapy (DT) is a psycho-therapeutic end-of-life intervention supporting life review, meaning making and legacy leaving. DT is well-established with adults, impacting positively on mental well-being. Evidence and consultation work suggests young people (YP) with life-limiting conditions (LLCs) would welcome a tailored digital DT based intervention. <h3>Aim</h3> To co-design a digital DT based intervention, called DIGNISPACE, for YP with LLCs. <h3>Methods</h3> Qualitative methods included focus groups with health professionals (n=23), semi-structured interviews with YP with LLCs (n=13) and family carers (n=12). Data were analysed using framework approach. Participants were recruited from hospices in the North of England. An advisory group of YP with LLC and carers supported the study and content of the DIGNISPACE prototype. <h3>Results</h3> Three themes were derived from the data: 1) Intervention purpose including amendments to the DT question protocol; 2) App components, content, and delivery; 3) Networks and support systems. Findings informed a model of dignity in YP with LLCs and the DIGNISPACE prototype, a digital time capsule of memories, thoughts, and creative activities personal to the user. DIGNISPACE enables YP to review their lives, talk about memories and leave a legacy. DIGNISPACE helps them address issues challenging to them and can be used alone, or with trained DIGNISPACE supporters, friends, and family. When shared the content will provide comfort for the bereaved. <h3>Conclusions</h3> DIGNISPACE is a co-created psycho-therapeutic digital intervention aimed at supporting the psycho-spiritual well-being needs of YP with LLCs. DIGNISPACE includes tenets of the model of dignity for YP in its content and delivery. Further research is required to explore DIGNISPACE feasibility. <h3>Impact</h3> We have created a new model of dignity for young people to shape future interventions. DIGNISPACE is a tool to support individuals’ psycho-spiritual and conversational needs - helping health professionals work more sensitively with young people and families.

University of Leeds (GB), University of Bradford (GB), King's College - North Carolina (US), King's College London (GB), Northumbria University (GB), Sheffield Children's NHS Foundation Trust (GB), Sheffield Children's Hospital (GB), Sheffield Hallam University (GB), University of Sheffield (GB)
Reduced inequalities
Openalex Percentile: Top 97%
Innovative Approaches in Technology and Social Development
AI Navigator

Ask Laika to Summarize, Analyze, and Connect papers live on the map.

Summarize Papers & Methodologies

Extract key findings, datasets, and comparative methods across publications.

Benchmark Rankings & Visual Analytics

Rank top research institutions, authors, funders, topics, and journals by Field-Weighted Citation Impact (FWCI) and paper volume with instant charts.

Connect Distant Disciplines

Bridge topological clusters on the map to find hidden collaborative intersections.