Ambulatory Care Study
Research type
Research Study
Full title
Who cares for the caregiver? Developing approaches to support caregivers in the CAR-T ambulatory care setting: a qualitative narrative study
IRAS ID
365419
Contact name
Robert Danby
Contact email
Sponsor organisation
Anthony Nolan
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
Background: Chimeric Antigen Receptor (CAR) T-cell therapies have demonstrated significant efficacy for patients with advanced blood cancers. In the UK, CAR-T can be delivered through an ambulatory setting, meaning patients can receive treatment and be monitored without requiring overnight hospital stays. This places significant responsibility on informal caregivers, who are responsible for monitoring patient recovery and being alert to signs and symptoms of neurotoxicity. Exploring the caregiver experience and understanding caregiver information and supportive care needs is essential to inform service improvements and policy developments related to CAR-T treatment pathways and supportive care.
Aims & Objectives: This study aims to understand the experience of caregivers who are supporting patients undergoing CAR-T therapy in an ambulatory care setting. It will:
•Explore the experience of caregivers during the ambulatory care pathway including the emotional, practical, physical, financial burdens and clinical responsibilities.
•Explore the variation in ambulatory care provision across centres in the UK.
•Identify the information and support needs of caregivers supporting patients in ambulatory care.
•Identify the interventions needed to improve the caregiver experience of ambulatory care.Method: This is a qualitative study using narrative methodology. Participants will be invited to take part in a one-to-one semi-structured interview with a member of the research team. They can also take part by providing a written account or voice recording, using a prompts guidance sheet to reflect on their experience. Thematic analysis will be conducted using NVivo 14 software.
Impact: This study will provide novel insights into caregiver’s information and support needs to make recommendations to improve their experience. We anticipate that our findings will inform CAR-T pathway development and enable CAR-T services to proactively support caregivers. In addition, we expect that the evidence gathered during this study about caregiver strain – including out of pocket costs, employment impact and emotional burden – will inform policy change.
REC name
London - Stanmore Research Ethics Committee
REC reference
26/LO/0200
Date of REC Opinion
17 Mar 2026
REC opinion
Favourable Opinion