Teenage and Young Adult (TYA) cancer Ambulatory Care experience
Research type
Research Study
Full title
Experiences of delivering and receiving ambulatory cancer care: Community-Based Participatory Research to inform teenage and young adult cancer services
IRAS ID
273131
Contact name
Rosalind Raine
Contact email
Sponsor organisation
UCL/UCLH Joint Research Office
Clinicaltrials.gov Identifier
UCL Data Prot. No:Z6364106/2020/05/56, Prospero registration: CRD42020167756
Duration of Study in the UK
1 years, 5 months, 1 days
Research summary
Summary of Research
In 2012 the NHS introduced Ambulatory Care (AC) for teenage and young adult (TYA) cancer patients, offering chemotherapy regimens and treatment that traditionally required hospitalisation. Made possible with portable infusion pumps, young people are taught to self-monitor and self-care, enabling them to reside away from the hospital whilst making daily outpatient visits.Summary of Results
The research found that Ambulatory Care (AC) had a positive impact on Teenage and Young Adult (TYA) experiences of cancer treatment, showing how AC delivers personalised care that supports young people's sense of wellbeing.One of the most valued aspects of TYA experience was the independence that being treated away from an inpatient ward setting enabled. Daily visits to the AC unit gave a reason to go outside and stay mobile. Young people described how this helped maintain their strength, energy levels and mental health. As a result, these participants said that they continued to feel part of society and not defined by their diagnosis of cancer.
A companion role was found to be critical to the AC model – a parent, sibling or partner who, working in partnership with the healthcare team, helped meet the various requirements of AC. Staying with the TYA overnight, every young person who took part valued the practical and emotional support that their companion provided.
The research identified how healthcare professionals require adequate time to support young people’s holistic needs in AC, beyond delivery of clinical care. There is a need for a workforce planning model for TYA AC, sensitive to the complexity and holistic nature of this care pathway.
The research calls for sustained investment in the psychosocial support of young people receiving treatment in AC, and also parents, siblings and partners as assets supporting ambulatory cancer care.
The research will now be used as the basis for further development of young people's AC services nationally.
This PhD study seeks to understand the first-hand experience of delivering and receiving ambulatory care, and to ascertain if adaptations are needed to deliver the required support for TYAs (aged 16-24) and their families. This is important now, as AC is beginning to be commissioned within other young people’s cancer services in the UK.
The service has proved safe, and many young people like the freedom that comes with receiving care away from the hospital. Health professionals think AC helps young people feel more independent, living a more ‘normal’ life during treatment. We do not know enough about AC, however, to know or be confident of the ‘tangible’ benefits.
How will this be undertaken?
A key objective is to understand the underpinning intent and reality of ambulatory care. The first step is to create a picture of the service’s origins: scrutinising policies, documents and undertaking interviews with 6-10 UCLH cancer staff. Then, around 20 young people and 7-15 parent/companions will be interviewed; walking interviews, and photo-guided interviews are included to help achieve this. The aim is to suggest solutions to improve the AC experience where it is needed. The study design is participatory: both researchers and members of the TYA cancer community are actively involved in the research process through an approach called Community-Based Participatory Research (CBPR).
Study outputs: In-depth knowledge of the AC experience made accessible to the cancer community; likely further development of AC at UCLH; a practice guideline to influence how services develop nationally.
REC name
London - Chelsea Research Ethics Committee
REC reference
20/PR/0131
Date of REC Opinion
2 Sep 2020
REC opinion
Further Information Favourable Opinion